ANA Discussion Forum
General Category => AN Issues => Topic started by: WAB on April 30, 2008, 08:51:22 am
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Debbi asked that I keep all her online buds up to speed. Can't imagine how much more difficult it would have been had you all not been there for her. We arrived in NYC yesterday afternoon with her folks and had a nice dinner with one of Debbi's friends. Off to the hotel and in bed early enough to watch some mindless American Idol. Not much sleep happening, so we both drifted in and out until about 5am. Found ourselves at NYU at 6am - would have been there sooner, but I think I was slowing Debbi down a little. Not sure her feet actually touched the ground - to say the least, Debbi was anxious to throw down with "Ethel" once and for all.
She was (is) in great spirits and only wanted the admitting process to go quicker. After about 230 trips to the bathroom and a visit from many nurses, doctors, etc... we were all pretty much in waiting mode. Because this is a teaching hospital, many very young people in scrubs were schooling by the OR room, which is close to where we were in a side room, anxiously awaiting their next real cool experience. I'm sure that they were all very good doctors, but as an old, married guy, my perspective is a lttle off.
Debbi was then escorted, on foot, towards the very "ER-like" metal OR doors. Not sure, but it appeared that the nurse was having a hard time keeping up with her. Although we watched her walk away, we could see she had a lot to say to the nurse that was al least a good two steps behind her -
Debbi boldly walked into the ER at about 8:30am (EST) and we don't expect to hear anything until noon or 1pm. I'll keep responding to this string periodically. Thank you all for your support and well wishes.
WAB
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thank you, thank you W, so very much for this update!!! That's our girl... walked in by her own accord, head held high! Good for her! Cheering her on and will sit tight for the updates. Now, W, you need to take care of yourself in the meantime. Maybe a little bite for lunch, a walk outside (we know its a nice one here today on the "good" side of the NE Coast)... and most of all (but difficult to do), try to relax. We know she's in fab hands there and am throwing in healing wishes, huggles for wellness and feeling lots of good vibes to help the cause (as well as pirate socks... not sure if she told you about that yet).
Hang in there... will check back for updates.
Yeppers, that's our girl.... so dang proud of her!
Phyl
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Willie~
Thanks for the update -- I have been praying for you guys all morning. I have always said that I had the easy part...I just laid there...it was my family and friends who had it so rough waiting (at least you don't have a 14 hour wait like mine did!). I know you will keep us posted. My sweet hubby would tell you to just remember that this whole AN thing takes time and to be PATIENT for the long haul!!
Stil praying,
Kl
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Willie-
She is in great hands. I look forward to speaking with her next week.
Joe-
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Thanks for the update Willie. Sounds like Debbi went in with the right attitude. She'll do great. It won't be long now before she's back in ICU and looking for ice chips. Tell her we all said hi.
My prayers are with you.
David
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Willie - Although Debbii and i just recently met on this site, I want to send along my good wishes to both of you. She is one of the firtst people I "spoke to" here and was very kind and helpful. I'll be thinking of both of you today. Thanks for the update.
Wendy
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I'm thinking of Debbie and sending lots of postive energy your way. She sounds strong and determined and thats a great attitude to have. Thanks for the updates.
Have strength!
Mary
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Willi
thanks for the update. My honey Nancy is due in for surgery this coming Monday with the same doctors and the same place. We are looking at one more MRI reading tomorrow before deciding what to do. We are particularly interested in how well Debbi does. I'm sure she'll do great and will be fine!
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Thanks for the update, Willi. I've been thinking about Debbi and her surgery all day. Mine is next Thursday. She's the first in a line of 5-6 of us that are having treatments (surgery or otherwise) over the next 10 days or so. I'm not surprised she was beating everyone to the OR.
When you see her and talk to her, give her our best...
Regards,
Brian
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Willi -
Thanks for the updates on Debbi. We are all thinking about her and sending good vibes her way! And yours too!
Tell her hello - from a fellow Jersey girl!
Lori
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Willie -
I echo the sentiments of everyone else here. Thanks for taking the time to update us - we look forward to more updates - and please tell Debbie she is in our thoughts.
We are all hoping for the best,
Jan
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Willie here again at 5:40pm. Debbi is out of surgery and currently in Recovery until about 6pm. Her surgery took approx 5.5 hours. We were able to see her for a couple of minutes, but expect to see more of her once they release her to NICU where she'll stay for at least a day before transitioning to her room. Dr. G suggested she most likely will go home either Saturday or Sunday.
Although I don't know how much she'll remember, she was aware of everything. She had head pain and some in her stomach as well. Although as recently a this week, there was some brief discussion around having retro sig instead of Translab, but she stayed the course with Translab. Dr. G. suggested afterwards that it was the right decision based on what they found. He was able to get most of the tumor out and only left a little on the facial nerve. Dr. G. didn't believe at this point that there was anything to be concerned about in terms of it coming back as a result of this decision and this is what Debbi would have wanted as well.
Debbi has some minor numbness on her right side, but Dr. G believes it should go away in 4-5 months as the nerve monitoring proved that she had a good signal throughout the nerve. She's able to close her eye and will no doubt get much better as the swelling goes down.
I'm sure Debbi will want to get online just as soon as she can and fill you all in on everything. I'll share with her all your best wishes - it will mean so much to her as it does to all of us.
Thank you all again.
WAB
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Thanks for posting - Debbi was in my thoughts and prayers too today. Just got your update as I was posting...Yay Debbi!
Hugs,
Tamara
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Way to go Debbi! So glad to hear that all went well without complications. Wishing you a speedy recovery, but don't rush it ;D
Thanks to your hubby, for keeping us updated.
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Yea Debbi! You did it. Welcome to the postie side of the world. On to a speedy and a healthy recovery And thank you Willie for the update.
And Melissa, Brian, Kimberly, and Tammera (did I miss anyone?) -- Debbi just kicked off the month with success. Follow her lead and you'll all be fine.
David
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From Central Jersey to North Jersey..."you done good kid". Welcome to the "other side", I'm glad all went well.
Joe-
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YEA!!
Glad that is over & Ethel is GONE!!!! Onward & upward!
;D
K
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Can I get an AMEN!?!? I'm so glad to hear Debbi is doing well. Thanks for keeping us posted, Willi. I look forward to more positive updates as I prepare for my own boogerectomy next Thursday! :D
The bar's been set..the gauntlet laid... I'll keep the new streak alive and kicking!
Brian
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SOOOOOOOO Good to get the updates. Thank you for filling us in. Sounds like she is doing well.
Mary
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Thinking of you in Vancouver, WA and very happy that "things" seem to be going smoothly. Major surgery isn't much fun, no matter how spectacularly successful it is, and my heart and prayers are with you, Debbi, and your family as you begin the healing process.
Sue in Vancouver USA
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Thanks for the update. Good wishes and prayers coming Debbi's way for a speedy recovery.
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Debbie
Welcome to "the other side". Call me when you are ready to talk. Our thoughts are with you for a speedy recovery.
Hope
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Hi Hope
Haven't seen you on the forum lately. How are you? I'm very sure you and Debbi will have quite a few noted to compare. You started the month and she finished it.
David
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Hope~
I was just thinking about you today...how are you?
K
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Congrats Debbie on being on the other side!! I am so glad you have come through the surgery well! I will continue to pray that everything goes smooth and you heal quickly! Thanks so much Willie for the updates to us, that is so thoughtful of you!
Praying for the rest of you who have upcoming surgeries in the next few weeks. Brian, Kimberly, Trish, Ceci, and Melissa
and for those of you who are having radiation treatments also Claire and AJ
I wish you all the best possible results in whatever treatment you have chosen!!
Glenda
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Okay, Brian, I'll say it "AMEN".
I'm so glad to hear that Debbi is doing well - thanks to Willie for updating us again.
One postie down, many more to go :)
Jan
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AMEN to that Amen also! Great news about Debbi! I told you we Jersey girls are tough cookies!!
Willie, thanks for keeping us posted! Deb has become part of our "family" and it's nice to be kept in the loop! Especially when it's good news!
Let's keep this good luck going with great results for everyone on their upcoming treatments.
DOWN WITH AN'S!!!!!!!!!!!!!!!!
Lori
PS - if Deb's recovery would be helped along by a trip to Seaside this July - that's where I'll be! It's good therapy to walk through the sand!! We can compare scars. 8)
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Willie,
Thank you! Sending wellness wishes to Debbi and congrats on her being a "postie" (post-treatment). Please give her healing huggles from me and onward and upward to wellness.
Great job, Debbi! We knew you'd do great!!! :-*
*runs off to wash pirate socks for next AN'er treatment -- need to check the AN Calendar*
Phyl
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((((HUGS)))) and prayers - I hope I am only so brave as to walk into surgery - - if they EVER schedule it!!!!! ARGH! Thank you for the update and continued well wishes!
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Thank you so much for the updates! I have been thinking about Debbi all day and I'm so glad to hear the surgery was successful and that she's doing well. Hang in there, you'll be as good as new soon!
Mary
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Willie:
Great news! This pretty much makes everyones day. :)
It sounds as if Debbi is going to be just fine, as we expected. Now is the time for rest and recuperation but please let her know that she is missed and we can't wait to have her back as a 'postie' (post-operative AN patient). Thanks so much for the updates. We look forward to more as Debbi progresses in her recovery. :)
Jim
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Debbi,
You are one tough chick!!! Walking into the OR?! :o I was so scared they had to knock me out first!!! But, then again, I didn't find this forum of wonderful ANers until 2 months after surgery-also Translab.
I was thinking about you all day and checking in on the site for updates your husband was so kind to post. Thank you Willie!!!
I have faith you'll make a "star" AN patient recovery. You're attitude is great, so optimistic. The best.
Awesome news
Dani
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Debbie and Willie
Know that prayers go out to you from California, wishing you a full recovery.
Congrats on your successful surgery and on becoming a postie.
Syl
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Willie -Thanks again for the update. I'm glad to hear Debbi is doing well. I'm sure she knows she has a lot of prayers, good wishes and positive energy coming her way. Same goes for you.
Wendy
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Whoo Hooo!!! :) Way to go Debbi!!! So glad to hear all is well. Thanks for posting Willie, I've been thinking about Debbi all day.
Melissa-2 weeks and counting!
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I am so happy for you both,
continued healing my friend, Nancy
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Amen!!
Thank you so much for the update.The people on this website are more than wonderful. We are so gifted to have it.
Continued Prayers for Debbi & her family as you move onward and leave that AN behind!
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Debbi - Someone mentioned 'HAT' therefore I sent you a picture of my 'Easter Bonnet' I receved as a result of my surgery..Can't wait to see yours!!! (I have to be totally nuts to send such a wonderful picture...Oh who cares, amongst friends!!)
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Ohio Also - I LOVE what you've done with your hair! I think everyone is going to want a "hat"! Could be the latest fad! ;D
Lori
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Willie,
Thanks for the update on Debbi, I love the idea of her discussing details of the procedure with the nurse as she walks into the OR. Now could you please post a picture of her in her new hat? :)
I think Ohio Also's hat is a winner in the hat contest. Wait a minute, we don't have a hat contest - but why not? Now that we have a calendar of events, we need a gallery of hats, so we can pick out the monthly winner for "best new design", "best decoration", and so on. We can also let the BAHA recipients enter their BAHA hat pictures. :D
Best wishes,
Steve
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Steve,
But whatever will those of you who choose radiation do??? Won't you be terribly jealous of our hats??? ;)
Tamara
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So glad Debbi is on the other side of surgery and came through well!
As many here have said, tell Debbi we're thinking of her (and you, Willi).
Now, will the "hat" thing help me make my treatment decision?? I'll be looking for further displays to see if I think I need one.
Cindy
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Congrats Debbie & Willie.
Now its time to regroup and recover. Lots of rest, time and peace. Keep going strong. It's an inspiration
Mary
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Willie back again with the latest (2:35pm EST 5/1)...
Debbi continues to amaze us with her progress. Huge difference in less than 24 hours. Initially we expected her to be moved from "Recovery" to a room, but there wasn't a bed available so she stayed there all night. In fact, we're awating her arrival in NICU (13th floor) as I type this. Although there's a lot of activity in Recovery, most of which doesn't promote sleeping, I believe the care she's receiving is by far the best in any one area of the hospital. She's experiencing some bobble-head-like sensations, but I imagine this will pass over time.
The staff here is great and attentive and for those who will be following in Deb's footsteps, feel confident that you've made the right decision in choosing NYU. And, for those who can't go a day without a jolt of Starbucks, the closest one appears to be at 33rd and 2nd, across the street from the Borders book store.
Once we get Debbi into a room, I'll read to her all of your comments. Go figure, you really can't get a pair of reading glasses on with the "hat."
I continue to share your good thoughts with Debbi and it has brought her great comfort in knowing you're all out there cheering her on.
Take care,
WAB
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Willie, thank you!!!!!!! BTW, I'm a dunkin donuts type of gal! But, good to know about Starbucks! Please hang in there! You're doing fab as well and thrilled you are keeping us updated.
Ok, since you will be reading this to Debbi later, here is my message to her:
"Ok, Debbi, we KNOW you were concerned about your hair, but as you can see, it really doesn't matter right this minute! Bedhair is all the new "rage" in the NYC, France, Tokyo and Milan fashion circles! :) Hang in there, I am SO VERY proud of you and congrats, you postie! You did it!!! Huggles from your cursed cruise director, Phyl"
thanks again Willie. Please get some rest as well!
Phyl
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There's a great panini place pretty much on the corner of 1st and 33rd, my wife was a regular by the time I left. Each time we go to NYU we have lunch there...a time to have a good meal and reflect on how lucky we are...
Tell Debbi I said hello.
Joe-
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Phyl - the man just said he'd found the Starbucks! How will he be able to rest now???? :o
:D
Lori
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Huge difference in less than 24 hours.
You know, I tell anyone who asks about my post op experience that I made progress every day. Thanks for reinforcing that, Willie.
Glad to hear that Debbi continues to do well. I knew she would ;) Tell her to keep up the good work! She'll be back here among us before she knows it.
Steve -
I think the hat contest is a fantastic idea! Do I get a special award for being the first person to be brave enough to post the pictures of my lovely BAHA surgery hat ???
Or, maybe we could name the contest in my honor. Something like "The Jan Award". I'm thinking maybe Lori could get me royalties on this LOL
Jan
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Steve,
But whatever will those of you who choose radiation do??? Won't you be terribly jealous of our hats???
We should win, if there is any justice in this world! :D Just take a gander at my "Cyber Man" mesh mask:
(http://stevegerrard.home.comcast.net/TheMask.jpg)
(originally posted in this thread: http://anausa.org/forum/index.php?topic=6219.msg58814#msg58814)
Steve
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Okay, Steve, you win!!!
This beats my BAHA hat hands down LOL
I don't know how I missed this the first time you posted it.
Jan
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ah, the Hannibal Lechter look, eh Steve! :)
Ok, here's mine (from my frappr pics.....)
(Debbi, if this doesn't make you giggle when you see it..... hang in there!)
(http://image1.frappr.com/pix1/i/20060405/f/5/a/f5aedd300bd19a7ead5bc58fd29e0be80_medium.jpg)
Phyl
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Debbi,
It is wonderful to know you are through this and are recovering like a champion!
I did my pre-admission today and will look to you for strength and inspiration in the weeks ahead (no pressure ;D
Sending you all my best wishes for a better day, everyday.
Trish
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Phyl -
you and Steve look like Spidey 8)
Jan
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I didn't know what you guys were talking about when you were talking about hats. That is hillarious. And I thought an eye patch and a crooked smile was unusual.
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Thinking about you too, Trish!
Mary
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Thanks Mary!
Trish
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And to think I was concerned about sending my 'Easter Bonnet' .. You all are a hoot and hopefully will cheer
Debbi B up when she is able to read. Thanks for Sharing!!
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Ah, Steve and Phyl.... the hat with the "veil" look.... tres chic.... What do they do, just hand you a pair of fishnet stockings to put over your head? And to think I missed out on such a fashion statement.
I think Debbi might pop out a few staples laughing at all these pictures!
Do you think non-AN-ers would think we're all a little bit strange for sharing photos of our scars, metal screws, stocking "caps", Easter bonnets and various bald spots? Whatever happened to vacation slides??
Better hurry back Deb - look at all the fun you're missing!
Lori
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Ok, Debbi, grab hold of your pressure bandage for this one!
*ahem*
Oil of Olay Face Moisturizer does absolutely nothing to deter CK Mesh Mask face :)
(http://image2.frappr.com/pix2/i/20060405/5/3/5/5357bee6e0e9d8f29554960d679d4c740_medium.jpg)
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:D :D :D
Phyl, Great photos you have posted last couple of days!! The imprint of the mask looks like you have scales like a fish!
Tee Hee...I too will probably have that look soon. I hear it is the latest rage. Ladies, get rid of the Alligator bags....it is time for the refined fish face textured skin! Be sure to wear your fish net stockings with it!
Mary
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Debbi, I wish you a speedy recovery , it sounds like you have a great supportive husband who will help you through the healing process.
6 days and counting for me - pooter you and i are having surgery the same day. :)
I wanted to share a poem a friend wrote for me that some of you might find amusing.
so the other day i heard a roo-muh
that my friend kimberly has a too-muh
its not as bad as it may sound
but it's a good thing its been found
her condition is called "acoustic neuroma"
(i know that cuz i have a diploma)
she's having surgery to have it removed
if the doctors mess up they will be sued!
with the surgery there are some risks involved
but through it kim's problems will be solved
she may develop some new problems however
would we make fun of her??? nooooo not us! never!
still i feel that it might be fun
(and i dont think im the only one)
to find some humor in this situation
and share it with kim's friends and relations
so without any further adieu,
it is my pleasure to present to you
a description of what might come to be
if things don' go the way we'd like to see
since kim may not be able to hear very well
she may not hear drums, a guitar or bell
after they remove the acoustic neuroma
kim may not be jammin to "my sherona"
the doctor will remove kim's balance nerve
so when she walks she might weave and swerve
so before you accuse kim of being a drunk
remember she's missing some important nerve junk
the surgery could cause partial paralysis of the face
mouth and eye dryness, and disturbance of taste
so if it looks like she's not enjoying your casserole
you'd better think twice before you call her an a**h*le
but now lets turn to the positive side
in this are many good things to find
kim's nose isnt affected by acoustic neuroma
from a mile away, she can sniff out any aroma
and lets face it, its not like kim's in a coma
this is a tumor, but its not melanoma!
she has lots of friends and people who care too
she has my support and she has help from you
kim, i hope that your spirits are lifted
i hope that dr. larouere is gifted
im sure the surgery will be a success
and that you'll be back after a quick rest
regardless of what happens on the operating table
you'll always be awesome , cool and able
if your face won't move and you're deaf in one ear,
we'll always be there for you for the rest of your years!!
i wish all of you with upcoming surgeries the best outcomes possible,
kimberly
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Kimberly -
that is an awesome poem! Sounds like you have some good - and talented - friends in your corner! And a sense of humor always helps too!
We'll be thinking of you and Pooter and all the rest! Good luck to all!
Lori
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FANTASTIC poem, kimberly! Next week, we'll be bonded for life by way of surgery date! How special is that? ;)
Thanks for the thoughts, Lori.
Pooter...
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Debbi has kicked off the month of May with success.....looks as if there a quite a few of us to follow in the coming weeks.
For those who have treatments/surgery in the coming weeks, is anyone getting as nervous as I am? I feel I am unberable to be around because I am so on edge and worried. I'm not sleeping well and I start the day off by apologizing to my family for any witchiness that will ensue throughout the day. I feel there is so much to do before hand also. Making sure the cupboards are stocked for the kdidies and husband, making sure all laundry is caught up, all bills are in order, completing projects at work, the list could go on, and on.......I'm stressed! I know I need to take a step back and breath....but I feel like I don't have time to even do that.....Pre-Op appt is Monday.....is coming up so quickly, I'm not as prepared as I thought I would be.
Hearing that Debbi has done so well is a great encouragement though.
And can someone please explain the puirate socks to me? I've been posting on here since Feb and still don't know what the whole pirate sock thing is all about :D
Love the poem Kim
Melissa....knees shaking, stomach rolling.......12 days and counting
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kim, I have to say, you have some pretty talented friends! That is great!
Melissa, ok... the his-tory of the piratitude and such.... pour yourself your favorite beverage, kick back, prop your feet and enjoy the "Good Morning" thread, where it all began (pg 1-4 gives the good insight... first we were a regular cruise ship... until our fearless Capt'n Deb came along to pillage and plunder):
http://anausa.org/forum/index.php?topic=929.0
Ok, so in 12 days, you'll be like Debbi, laying there with a fuzzy haze (hey Debbi, enjoy the haze now while you can!), wondering how it all happened so quick, realizing that you are (to be) a postie...... and we're gonna be cheering you on as well!
Phyl
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Willie here…2:45pm 5/2 (Friday)
Well, it’s post Ethel-ectomy +1.5 days and Deb’s progress continues to be outstanding. She’s received her official NYU frequent traveler card as she’s on her 3rd different room as of this morning. It appears she’s progressing so well, they’ve decided to disconnect all lines & tubes and now placed her in a semi-private room without any monitoring devices. She’s starting to eat solid food again and is able to get up and walk to the bathroom, and will be attempting a walk through the hallway in a matter of minutes, albeit with some help. My guess is she doesn’t really need the help, but she’s a giver and trying to help us feel useful. OK, maybe not useful as much as provide a soft landing should she suddenly take a header.
Last night, Debbi shared her hospital bed with me and settled in to watch a little TV. About 15 minutes into it, she noticed that the bed was getting very wet. Now, I know our incontinent dog was about 60 miles away, so we quickly searched for the source to find that the little pee tube had decoupled and provided a very colorful cascading waterfall. It would have really looked cool if somehow we could have affixed a gargoyle to the end, but we took comfort in knowing that they were out scaring little children.
Dr. G. stopped by today and echoed what we knew – she’s making great progress and could possibly go home tomorrow. In fact, they’ve already removed her belly dressing and plan on taking off the head dressing (hat) tomorrow. Belly dressing you say? Yep, while she was here, she decided to have some liposuction – not that she needed it. Actually, it seems that they use the belly fat to fill the void left behind. I brought some GE Tub & Bath silicone joint filler, but it only had a warranty of 20 years; whereas not unlike butt fat, belly fat appears to last forever.
Debbi remains in great spirits and the numerous calls, visits and posts continue to be an inspiration to all of us.
Willie
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Melissa - try not to stress out too much. I did the same thing before my surgery - trying to make sure everyone else would be okay in my absence. You know what? They manage. They might walk around in wrinkled t-shirts for a few days and they might have cereal for lunch, but in the big picture - it's not as big a deal as we tend to think it is.
I warned my daughter's preschool teacher that I'd be in the hospital, so if she showed up to school looking like PeeWee Herman after a rough night, it wasn't my fault. I warned anyone that might stop by the house that I'd cleaned it before I left and I had no control over what it looked like after I closed the door behind me. I figured that would at least save me from feeling like a lunatic that couldn't even dress my kids or clean my house. I do think paying the bills before you go is a good idea. I know if I hadn't, we probably wouldn't have had running water or electricity when I came home because I don't even think my husband remembers how to pay bills.
Take some time to enjoy yourself and your family. The other stuff will get done. Husbands are smarter than they look sometimes! :D Sometimes....
Don't worry, you will be another May success story!
Lori
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Willie --That Debbi's a trooper! Good for her for recovering so well! I knew she would.
I'm glad to see you clearly have a good sense of humor. I know that's got to be helpful to her! I got the complimentary liposuction too, but I wish they had taken more....You can tell Debbi that she's now officially a "fat-head". That's a compliment in this case...
Lori
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ya know, although many surgical folks get "liposuction", just remember that us radio-heads can tune in, without fee, to Sirius and XM Satelite radio just by twisting our heads to one side! :D
thanks Willie for the update! Fab news! Now... as for the tubes.... and "waterfalls"... um....ew.... TMI! TMI!
(HI DEBBI!!!!)
Phyl
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Lori-
Thanks for the compliment....I think.
Husband Joe
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I figured a few husbands would comment about that!! ;) See, you have a good sense of humor too!! Now THAT'S a compliment! ;D
Lori
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So glad to hear Debbie is doing well! I am very impressed that so soon after surgery, she was up for watching TV! It sounds like you are being a terrific support to her, Willie.
Kimberly--your friend's poem is wonderful! Gotta love that toom-uh/room-uh rhyme...
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Lori,
Its really amazing what husband can do when they have too. Folding laundry is one thing Louie cannot do! I guess its because his hands are too big. I have given him many lessons but he still can't do it. To Louie's defence he makes a deadly pizza. He had a pizzeria for 17 yrs so I guess with all of his experience and being from Naples........yummy!!
Sounds like Debbi's hubby is up to any challenge. What great news to know she's recovery so well.
Anne Marie
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Debbi,
You are setting the bar pretty high for those who are follow! Let us know all your secrets when you are up to it.
Best wishes,
Trish
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Another opportunity for a multiple reply - so many posts to keep up with!
Kimberly and Pooter, best wishes in advance for next week. Having the poem puts good karma in your corner, so you should do great!
Phyl, I must take second place in the hat contest, your Cyber Woman mask leaves mine in the dust, plus you have onion bag / fish scale / Deep Space 9 facial markings that I simply can't match. I humbly bow to your obvious superiority.
I have said before that I learn the darnedest things on this forum. Today's lesson includes a tip from Lori that you aren't supposed to eat cereal for lunch - apparently it is only good for breakfast and dinner. And from Anne Marie, I learn that I can get out of folding up laundry by claiming that my hands are too big. Good to know, filed away for future reference.
Oh yes, I suppose I should say something to Willie and Debbi, since it is (or was) their thread. Thanks for the update, I'm glad to hear that Debbi is doing so well, and Willie, you post like you've been doing this for years, where have you been hiding?
And Melissa, you have two weeks yet, so just chill. :D
Steve
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Debbi - I am so glad to hear that things are going welll for you. You must be one strong,tough cookie From what I can tell, Willie is on heck of a guy too! Keep up the good work with your recovery.
Wendy
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Kimberly
I loved the poem your friend wrote. Very creative and funny. I know you don't know me as I am fairly new to this site. Good luck with your surgery. I will check in and see how you are doing.
Wendy
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Actually, it seems that they use the belly fat to fill the void left behind.
Ah yes, the every popular fat graft - one of the reasons some of us here refer to ourselves as "fat-heads" ;D
It sounds like Debbi's making great progress! Yea!!!
Jan
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Hope to hear more updates on Debbi when you get a chance - so glad she's doing well!
Steve - Did you have to pay extra for the blue mask? How come Phyl only got white?
Tamara
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White for our angel Phyl and blue for our cute little boy Steve ::)
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You go Debbi! You're the girl ;D I am so glad you are making such great progress!! I know in the future I will face this and it is so comforting to hear of progress like yours!
We can see you have wonderful support too!! You really are good at posting Willie!! And I can tell there is true love there, I mean to share a bed with you in the midst of your special cascading waterfall ;) Oh Willie, be sure to get us a good pic of the hat to share before the doc takes it off. I'm so sorry Debbie that you won't get to have the fishnet scale look though but I bet you really look good in your hat!! :D
When you get home enjoy your cereal for lunch and your towels that may not be folded the best. Those are small things to put up with. After all the best news is that you are doing so well!!!! Keep up with the good news, we love to hear it!
Glenda
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Steve,
How did you ever get by before this forum? Apparently, you were floating carelessly through life not knowing all these important things. I'm glad we could help you on your path to enlightenment.
Annmarie, I would gladly fold the laundry if my husband would make me a real pizza! We're not up to that lesson yet - he just learned how to make a hard-boiled egg last week. The pre-requisite for that, of course, was how to boil water. He's coming along...
Lori
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I stopped here today hoping to get a glimpse of Debbi's surgery hat before it was removed. Willie, any chance you're going to post one?
Remind her it's all purely in the interest of medical science - plus we all love to smile ;D
Lori -
hate to tell you, but I think the "hands too big for folding laundry" that Anne Marie cited is just an excuse ;) Keep working with the hubby, as frustrating as that may be. I think the hard-boiled egg is progress though. When you're done training him, I have two 12 year olds who are totally helpless - maybe you could stop by sometime :)
Steve -
another important tip. You can eat ice cream for breakfast - but only if it's vanilla because then it can technically be considered just frozen milk. My own mother taught this one to my children many years ago. My own mother, can you believe it ??? She never let me or my siblings eat ice cream for breakfast when we were kids :o
Jan
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But what about strawberry ice cream? Then you get a serving af fruit in there too. And chocolate is rich in... something... antioxidants... magnesium...whatever...it must be good for you.
Willie, I'm with Jan on the hat pictures.... You know all the 'fancy" ladies were hats for the Kentucky Derby! She just put hers on a few days early I guess!
Lori
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Lori, Jan and Steve,
You three are the three musketeers ;D I know my hubby is using his hands as an excuse, but he does make a mean pizza.
Now my mother-in-law makes a white pizza with onions, rosemary and garlic...........it is heavenly. The crust is so light and airy. She always makes for special occasions. My non-Italian friends go nuts over it. It's more like a focaccia bread. Yummy, could use a piece right now ;D
Well Debbi, I hope all this talk about food doesn't upset your tummy! Can't wait to see you post. I think its going to be sooner than later ::)
Anne Marie
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Willie here...
Debbi and I are at out home relaxing. I've just read all your posts to her. It would appear I now take dictation as she's asked me to let you all know she'll be posting Sunday and I will no doubt be folding laundry. That's right, we broke her out of the big house early this morning. The nurse said "you could go." I'm hoping she didn't me you can go to the bathroom as Debbi saw this as an opportunity to run for the exit door.
I will officially retire at the conclusion of this post and do so with the knowledge that Debbi's road to recovery will be smoother due to all you wonderful people. Thank you for helping us through this and hopefully we can pay it forward some day.
Debbi will no doubt be back online tomorrow with pictures to follow soon.
Thank you all, Willie.
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YYYIIIIIPPPPEEEEEEEE!!!!! Glad that you are home & doing well -- I knew you'd do fine!! Keep up the good progress, but remember that it is OK to have a kind of bad day every once in a while and DON"T PUSH IT TOO MUCH!!!
<3 <3 <3 <3 <3 <3 <3 <3 <3 (hearts)
K
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Glad your doing well wishing you the best and a very speedy recovery.
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Willie,
No folding laundry for Debbi, got it!!! I'll send the Canadian RCMP after you ;D
So glad to hear you are at home. No cooking dinner either Debbi ;)
Thanks Willie for the update.
Anne Marie
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Anne Marie -
I've never been called a musketeer before - not that it's a bad thing ;) The white pizza sounds heavenly - you'll have to give us the recipe. Or if your mother-in-law would agree to ship one to me that would work even better - I hate to cook!
I can't believe that Debbi is home already! That just seems so fast - yes, I know, easy for me to say, it wasn't my AN :)
I'm anxiously awaiting the lovely Kentucky Derby hat pictures. Guess I'll have to tune in again tomorrow.
Welcome home, postie Debbi !!!
Jan
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Willie thanks for all the updates. As you can see, there is great interest and concern, and now comfort that Debbi is well on the road to recovery.
Look forward to hearing from you Debbi you rock star you!
Trish
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Thanks Wille! :) You've made an excellent secretary and Debbi should give you a raise or promotion. I'd ask for one! ;)
DEBBI!!!!!!!!! Are you reading this? Congrats hun! You did it, you POSTIE!!!!!!!!!!! Great job!!!! Now, don't over push and for geesh sakes, let the brood do the laundry. Great to have you back!
Phyl
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Debbi -
Glad to hear you are home and doing well. Your hubby seems to be taking good care of you. He deserves 100 gold stars. I'm sure he will continue to pamper you, if you let him. You are obviously a very strong person. Good for you . Make sure you take advantage of at least a little of the pampering you deserve. Looking forward to getting to know you better. Willie - thanks for the updates. Even though only met Debbi on this site a few days before her surgery, I have been converned for her welfare. It's good to know she's in good hands. My best wishes to both of you.
Wendy
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Debbi ...........
So glad to hear that you are home and well. You will no doubt get more rest and relaxation at home than you ever will at a hospital. You have a wonderful husband.............can I borrow him for like a week or so??? :D
I wish you a speedy recovery. This is a great time of year to be able to be home - I am not sure where you reside, but I'm in Michigan and happy that I won't have to be recovering with snow falling outside.
kimberly
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Hi Debbi,
It is so wonderful hearing that you are progressing so well. I am sure it feels SOOO good to be back home in your own bed. Your husband is a gem (as I am sure you know) so he will continue to be there for you and we will be here for you! :-) You made it to Postie status. You did it! You continue to be cheered on from sunny warm Arizona, what is snow, anyway??? LOL, in summer you in Michigan will be saying what is 110°, anyway??? Wherever you are Debbi, warm or cool, you have your fan club here.
Mary
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It's me, everyone!!! I am amazed to have been in the hospital only 78 hours from check in to check out!!! Can anyone beat that?? I was so thrilled that they let me come home. Resting in the hospital really is an elusive goal. So my version of events -
I walked briskly into the OR and got myself situated on the table, staring at the bright surgical lights and taking in the ever growing team of surgical folk. They got me put out very quickly and the next thing I knew, I was staring at that darned surgical beam light and coughing out my breathing tube (yucky, but not as bad as I thought).. Followed by an immediate need to throw up, which they accommodated expeditiously!
Next thing was being in Recovery - like a super, duper ER episode but only with all of the fluids being real as opposed to fake. I had massive pain in my head which took a while to control. Before I knew it, though, I was sipping (sorta) apple juice and being visited by my wonderful husband, parents, and friends - they were surprisingly accommodating in the Rec. Room in terms of letting family come in.
I learned quickly that they got just about all of Ethel - left a few toes that were clinging tenaciously to the facial nerve, but they feel that whatever little nubs are left will be harnless. The biggest hurdle for me was that I did come out of this with facial "numbness" which we all know means palsy. My right side is pretty droopy, especially when I'm tired. My eye shuts pretty well, but I need to keep drops in it during the day and goo and a patch at night. Length of time my nerve to recover is hard to determine - maybe a couple of months or as many as five or six. That is probably going to be the hardest part for me - but I'll work hard to do whatever I can to speed recovery.
Haven't had the dizziness that so many have - no room spinning at all. I was up the second morning (Fri) walking to the bathroom and by later that day was doing laps (assisted) around the hallways. Great to be up on my feet. Started eating a soft diet the second day (very little, but enough to pass muster!)
I spent the first 24 hours in Recovery - not due to my condition but due to a shortage of beds in NICU. Other that the constant noise and activity, the care was excellent - had a neuro nurse taking care of me and the other AN patiend of the day, so we got terrific care all night. I didn't sleep at all the first night - lots of discomfort (yep, you were all right, that first day is a killer) and all the noise and confusion of the RR.
Thurs afternoon I was moved to a Surgical ICU room - four of us, again, good care. Got some rest that night. Last night, in a semi private room that was blissfully quiet until they brought a post-gall bladder woman in - she was unable to take narcotics for pain and by 11 PM she was in excuritating pain, terrified, and I found myself teetering by her bed by 1 AM holding her hands, telling her to breath, and waiting until the nurse could get back with more stuff. Finally at about 2 AM they found the right fix for the pain. I felt so sorry for the poor woman - she was so sweet.
I was so good to sleep in my own bed last night - totally quiet - well, except for all the sounds in my deaf ear (more on that later). It is really amazing what a deaf ear can think it hears. I'll write later about some of the weird things I heard the first few days.
My superstar husband has been amazing (but you already know that) - every time I even moved last night, he was right there to make sure I was okay (and this from a man who can sleep through anything normally) - he set the alarm to make sure he got me meds on schedule.
I am definitely feeling the exhaustion today - I expect to nap and rest most of the day. However, I did have a half bowl of cheerios this morning - all of which made it successfully to my mouth (hey, eating with half a mouth ain't easy, kids!) Then, Willie helped me with the much awaited shower and SHAMPOO!!!!! I feel SO good now! I am sitting in my comfortable chair, surrounded by my family and husband, cats and dog - life is pretty good. So far, the SSD hasn't bothered me too much - time will tell on this.
I promise pics later (my dad even got one in the Recovery Room!) - I think you'll like what I did with my bonnet - I may be running right up at the head of the pack.
For all you soon-to-be-posties - I will be senind you lots of good vibes and energy and prayers. Remember that the first day is pretty rough, but you will feel better each day. If anyone wants to talk this week, send me a quick PM and I'll respond with phone number.
NYCArtist - tell your fiance she is in great hands and it sounds like she also has a great support system in you. Tell her to practice some deep breathing when she is feeling stressed, pain or nausea - it really helps.
You guys are awesome - all of you!
Your newest Postie - Debbi!!!!!!
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Wow Debbi - you're going to be a tough act to follow for all the others, but I know they'll do well too.
I'm so glad you are doing so well. You set a fine example! Small "inconveniences" are to be expected - eye drops, eating with half a mouth, noisy deaf ears... but this too shall pass - or you'll learn to deal with them. One bit of advice - don't order soup out at a restaurant - messy!!!
Take the time your body needs to rest and recover and don't over do thing!
Continued good luck to you!
Lori
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Hey Postie
You did it!!!! Congratulations. Glad to hear things worked so well. Now take it easy and get some rest. And you know if you have any questions, fire away. There are a bunch of us here that can fill you in on some of those odd little postie things.
Good going, Debbi!
David
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Debbie,
Congratulations on being a postie! You made through OK and that is wonderful! Now rest and try not to get tired the first few weeks - your facial nerve will thank you for that. Everything will be back to normal, I am sure - take it form twice the postie! Are you still on steroids or painkillers?
I was wondering how many people are in NICU at NYU these days. You wrote four but I remember more from 20 years ago. Maybe, it was my double vision post surgery!
Congratulations again and have a smooth, fast recovery!
Eve
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Congratulations on being a postie, Debbi - and in record time, too. Very impressive!
I can't wait to see what you've done with the bonnet! Bet we'll all be jealous ;D
Good to have you back,
Jan
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Debbi:
Congratulations on the successful surgery and wonderful recovery.
Linda in WV
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Debbi, very happy to hear that your surgery went so well. You seem so full of energy and spirit so soon after your surgery. WOW! Very impressive ;D I wish you continued success on your recovery.
God Bless,
Annette in sunny AZ
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Way to go Debbie!
I'll write more later -- I'm off to catch a plane back to Houston! So proud of you!!
Hugs,
K
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Congrats on a stellar recovery! I'm inspired, but don't know if I'll be able to meet the standard you've set!! ;)
Well done!
Tamara
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Great to have you back and on the road to recovery.
Joe-
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I'm inspired, but don't know if I'll be able to meet the standard you've set!! ;)
Tamara -
not to downplay Debbi's impressive recovery, but try not to feel any pressure to have a similar one. As we always say here - and it's absolutely true - everyone is different. I don't want to take anything away from Debbi and I couldn't be more thrilled for her, but keep in mind that you will recover in your own time - and although your experience may end up being vastly different from hers, and Pooters, and mine, and everyone else's, I'm confident that you will do just great.
Keep the faith; your day is coming,
Jan
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Debbie,
So glad to hear you are home and doing well. Call me when you feel up to it and we can share recoveries. Each day and week does get better and better. Listen to your body.
Hope
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Bravo, Debbi! Job well done. You seem to be an amazing woman and you also have amazing healing powers. Are you sure you aren't Wonder Woman in disquise, or something? ;D ;)
Hoping it continues to be good, as I'm sure it will be.
Sue in Vancouver USA
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Wow Debbi, you're going to be a hard act to follow!!! So wonderful to hear how well you did! Your husband was so great with all the updates! I'm so glad to ehar you're doing well. Take it slow now that your home. Rest while you have an excuse :)
Melissa
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Debbi
I am so glad to hear that you are doing well. I will look forward to reading your posts during your recovery.
Sam
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Debbi - Welcome to 'The Other Side'... You certainly generated a lot of chatter. Everybody Lovin Everybody :):):)
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Hi, Debbi:
"Welcome back' and congratulations on achieving 'postie' status with great flair, setting (possibly) record-breaking time in terms of your hospital stay. I'm sure your post-op issues will eventually resolve and you'll be fine in no time. Your great attitude, solid support system and excellent medical care in the operating room will all aid in your recovery. The updates were much appreciated and your post even more so, considering you just had AN surgery. Well done, Debbi. :)
Jim
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Hi All-
First, let me echo what Jan said - everyone who is coming up for treatment - take it at your own speed! I don't for one minute know that I am extraordinarly lucky to have come through this as well as I did. I think much of speed of departure from the hospital had to do with the fact that I basically experienced no nausea and dizziness, so was able to move to solid foods very quickly - this, in turn. allowed me to get out of bed and walk. I don't think they would have let me go if I wasn't able to do these simple things.
One of the things that may have helped me is that I ate a very (boringly) healthy diet for the last week or so before surgery - no meat, limited fat, lots of veggies and whole grains. I'm a pretty healthy eater anyway, so this wasn't a huge deal - but I do think it helped. I am continuing to load up on healthy food during this initial phase of recovery, too. Of course, this also helps me to feel like I am controlling something in my world!
I really hit the wall yesterday - very tired by the end of the day. I notice that the palsy gets worse as I get tired - good to know.
Today I slept until about 8:30 (which was heaven); then Willie helped me shower and try to de-goo my hair a bit. That stuff they put on your hair is really yucky, isn't it? My other big milestone of the day was that I took a short walk out into our driveway and on our patio and even sat outside for about 20 minutes. It was a glorious sunny day in NJ and our house faces into the woods, so I could hear the birds singing and smell the fresh smells of springtime. Mom sat with me and we just had a very nice time. Gotta really cherish those moments as they come along.
Under the category of funny - I took a fairly big swig of water (from my trusty water bottle, which I have mastered) and apparently it was just a bit too much - because it shot right out of the right side of my mouth in a lovely arc. Mom and I had quite a good laugh about that!
I had a pretty good day today - took a little nap this afternoon. Willie is now preparing a lovely egg white fritatta with leeks and feta and mushrooms (yep, I told you that my appetite was coming back!) Things are smelling so good that my stomach is actually growling. Oh, and I was to be on the list for that white cheese pizza, too - that sounds like heaven!
Dr. Roland called me this morning to see how I was feeling - very nice of him. Talked a little about pain managment - I took severall half-percosets yesterday which I'd prefer not to do. He said that I could take ibuprofin now during the day, which will help with both pain and swelling. Yippee! And, I am scheduled with him this Friday morning to have all my sutures removed!!!!! Hooray! The ones in my belly are particularly hideous right now - green, yellow, bruised and swollen - revolting!
So just wondering what sorts of noises other posties have heard? I actually heard voices in my bad ear the day after surgery, but suspect it may have been the morphine. I now sometimes think I am hearing running water - which turns out to be totally "in my head." I have a general sense of "fullness" in the right side of my head - probably that darned belly fat!
Well, I am waiting to hear from NYArtist to see how his fiance did today with her surgery. Next week is another big surgery week and I intend to be right here cheering everyone on!
You guys all rock!
Debbi - stumbling around in NJ
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Debbi -
sounds like you are doing great.
Just wanted to tell you that Dawn detergent works wonders on removing hair "goop" like bacitracin and neosporin - and yes, you can use it on your hair.
I can't take credit for this tip - Lori's the one who told me prior to my BAHA surgery.
Happy shampooing ;D
Jan
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Wow, YOU GO GIRL!!!!!!!!!!!!!!!! I am so impressed with your spunk. By the way, will your hubby make extra food for us??? How divine it sounds.
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Debbie,
It is so Wonderful that you are doing so Well!! I'm so glad things have worked out so well for you! Congrats on being a "Postie"
I hope you continue to do well and have a speedy recovery!
Glenda
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Debbie~
I was still picking stuff out of my hair after a MONTH!! That is some super-hold Dippty-Do (is that what the stuff was called that our moms put in the hair as they rolled it is pink spongies on Saturday nights to sleep in?? -- You know we don't even OWN a sponge roller at our house!!!!!) ::)
K
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Dearest Debbi,
Congratulations on your successful surgery and quick pace on recovery! I'm really happy for you and proud of you! You're really setting the bar high, eh? I'm sorry I didn't post over the weekend. My family and I went camping this weekend and I had my pre-op visit at the hospital today. So, I've been away from the computer since Friday afternoon. I was happy to return and read all of the positive updates from over the weekend.
Now, I'm in the same boat you were in early last week. Surgery day coming up and the butterflies are swarming in my stomach. I'll do my best to keep the bar high. I understand we each have our own experience and will not put any unnecessary pressure on myself.
I'm REALLY happy for you and wish you continued progress in your recovery. Congrats, POSTIE! :)
Regards,
Brian
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Hi Brian,
We will be cheering you on!!! I am sure this week will pass and you will go to postie status with your own time, pace and grace. We will be here waiting to hear how things go. You take care of yourself first, okay?
Mary
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Brian,
Ditto from me!
Butterflies are good luck. You will do great!
Best wishes,
Trish
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*runs in, gives POSTIE Debbi healing huggles for continued wellness..... runs back out*
vvvvvrrrrrroooooooooooooooommmmmmm..... woosh!
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Speaking of butterflies, a wise professor once said, "It's okay to have butterflies, so long as they are flying in formation.". Words to live by.
Thanks everyone, and a special shout out to Kimberly and all the others (Nicole, Trish, Claire, and Melissa) who are having treatments soon.
Regards,
Brian
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Brian-
You're B minus 1!!!! I've got my pom poms and pirate socks out to cheer you on. If you don't mind, I'll just wave the pom poms as I think jumping up and down is pretty much out of the question right now!~
You go!
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Hi Brian,
We are all cheering you on, some with jumps, some with pom poms and some just yelling their hearts out. Know we are with you in spirit!
Debbi, I am just so impressed with your progress and spirit!!!!!!
Take care,
Mary
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Debbie,
I'm so happy that you are doing so well.
You are truely an inspiration to one who is anxiously awaiting the day she'll be a postie. Having all your updates with so many details, good, bad and ugly, helps me get a better understanding of what I will also be experiencing very soon. You help confirm what everyone tells me--that I will be ok.
I'll keep looking for the updates.
Syl
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Me again-
Hit a new milestone today - walked down the driveway and back, accompanied by mom and the collie. Now before you dismiss this whole driveway thing - important to know that it is about 150 feet long and slopes! The sloping was a liittle challenging - but I found that if I looked out rather than down, it really helped. Think I read that somewhere here on this forum, so thanks!
Then, I went out to the patiio and very cautiously got on our glider swing - and it was great! Ah, progress is measured in tiny little steps, isn't it?
Tommorrow I am hoping to get a picture of the bonnet up here - have to download everything to my pc first. Mom, Dad and Willie took tons of pics so I will have to choose the "winning" shots! Maybe we should have a seperate posting just for bonnets, nets, scales, etc. BTW, I LOVED all the pictures!!
I must also say that when Willie read me your posts each day, it was such a huge boost. Can't imagine trying to go through this without all you wonderful people. And, since I know that not all my days ahead will be good ones, I am glad you're right here with me - thank you, thank you, thank you!
Getting lots of rest, eating well, taking it slow...
Debbi
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Hi, Debbi:
Congratulations on the 'driveway walk' and porch glider excursion. It sounds as if you're taking the right approach; venturing out and attempting to navigate but not pushing it beyond what your body is ready for. A good initial post-op plan. Keep it up - and thank you Debbi for your indomitable spirit that is inspirational to us all.
Looking forward to your 'bonnet' photos, too. :)
Jim
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Debbi -
all I can say is "You go, girl !" It's great to hear your recovery is going so well. From my recollection of my post op recovery, navigating a driveway like the one you describe is a huge accomplishment.
It's also nice to know that our wishes while you were in the hospital were such a big boost to you.
I know Brian (Pooter) said he'd have a "scribe" updating us on his progress, so maybe we can make sure to pass along comments to him via his scribe while he's in the hospital.
And, Syl, I see you figured out how to post your picture! I'm always so happy when people do that - it's really nice to put a face with a name :)
Jan
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Congrats!
thats the ticket .. slow baby steps.... I was happy after 3 weeks just walking around the house on my own!
now almost 3 years later.. I'm out Kayaking every chance I get .. slow but sure .. you will get there!
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Hi Debbi - So glad to hear that you are well on your way to recovery. I hadn't seen your post or I would've sent a note sooner. I am thrilled that you're doing OK. When you feel up to it, please give me a call.
Mary
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Hi All-
I posted some pics to my blog, for those of you who have inquiring minds... Hopefully my bonnet enhancements will pass muster! ;D
I'll try to post here later. Having a tired day today - probably did a little more than I should have yesterday. And, since we are making the trip into NYC tomorrow to see the doc, want to rest up today.
Hopefully everyone has seen the post from Pooter's wife, Jenni - hope he is doing well...
Debbi
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Hi, Debbi:
Thanks again for posting. Like so many, I visited your blog and enjoyed the photos, including the 'bonnet'. You look fine and I'm sure you'll be back to normal quite soon. For now, get all the rest you need. We enjoy your updates but your recuperation has to take priority. :)
Jim
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Debbi,
I gotta tell you... I don't know which is better... your leopard print or my fishnet face!?!?!?! :)
(thanks for sharing!)
Phyl
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We girls have to go for the glam, right?
Willie fashioned the little black cat for me, too - with a piece of gauze from the nurses staion - it kept the residents and interns buzzing.
Debbi ... having a tired day in NJ
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Debbi -
VERY fashionable hat! I love what you did with it ;D
You should definitely win a prize!
Get some rest,
Jan
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Glad my bonnet meets with approval - I'm just trying to do my part!
Here's what I just posted to my blog about today's events and adventures (sorry for not having fresh material, next time...)
A Red Banner Day!!
We were up at the crack of dawn and on the road to NYC by 7:30 AM - in the rain. We being me, Willie, mom and dad. Took us a couple of hours to get in, but the really cool thing was that I experienced ZERO (zip, nada) dizziness or disequilibrium (one of my fancy new words - like it?) during the drip!
Got to the hospital parking lot, where the attendant directed us about halfway down the ramp. (Stay with me on this - I'm about to make a pointl...) I launch myself from the car with gusto - right up until I by brain realizes that I am NOT on a flat surface - eek! I grabbed the car and mom until I could get my wits about me, then proceeded with extreme caution up the ramp and into the hospital front doors (with my armed guard protecting my flanks.) I'm sure it was quite a site.
We were a little early, so stopped at the Starbucks kiosk for a coffee - my first public event, complete with lots of ambient noise (the enemy of my people, the Single Side Deafies.) All systems go, although I will caution myself against ordering hot beverages in public again for awhile. Apparently the numbess in my mouth causes me not to realize something is hot until it reaches my throat - well, you can imagine how that turns out.
Off to the Surgeons office to be "de-sutured." He was very pleased with his work - and with my progress. Stitches (both head and belly) came out without a problem. I had armed Willie with a list of questions, so while the sutures were flying out, the questions were flying equally fast. Good thing Dr. Roland is a brain surgeon and able to multi-task with aplomb. The hightlights - because I am not having the balance issues that everyone expected, I have the green light to try a short driving expedition this weekend (Willie will be sitting beside me, fully clenched and ready to pounce.) Dr. R also feels like my face may resolve sooner than the expected 5 months or so. He will see me again in about 3 weeks for an assessment and will refer me to a facial physical therapist as needed at that time. Numerous other little things, but all positive!
The next big accomplishment of the day (see, I told you this was a Red Banner Day, didn't I?) was lunch IN PUBLIC! We went to IHOP (yes, Willie's favorite) where I selected the multi grain pancakes as being the safest option. Good choice, as I was able to get them into small bites with no mishaps along the way - only disappointment was that all of the syrup tasted weird to me (I think maybe the tongue numbness is affecting how I taste sweet things...) There was a big group sitting right next to us for awhile that was VERY noisy, so I got to experience that aspect of SSD for the first time. Didn't much like it. It is SO hard to hear when there is background noise. However, I'll give it some time to see if it gets easier - and in the meantime, I'm sure I'll drive everyone crazy saying "what?" all the time. sigh.
Once home, it was time for a little nap - up and feeling ready for almost anything now (okay, that's probably a slight exageration, but I do feel pretty darned good!)
Debbi - stitchless in NJ and sneaking up on the car...
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Hi, Debbi:
Thanks for the latest update....and it's a good one! Getting the stiches removed is always a relief and your doctor was very encouraging.
Overall, you seem to be doing very well and so, once again, congratulations are in order! :)
Your recovery sounds similar to mine. Eating out for the first time (I did this on my release from the hospital. I had pancakes, too) and driving were big milestones for me, as they are for all post-op AN patients. The SSD takes getting used to - but you will. I say 'What?' a lot and no one seems to mind that much. Of course, there is always the possibility of a BAHA or TransEar if you feel you need some help with hearing. Many do.
I expect to read of many more 'accomplishments' for you as the days roll by, Debbi. Your positive, 'can-do' attitude is obviously helping you, as it usually does those who have no serious post-op complications and are eager for recovery (Jim raises his hand). Keep it up! We really appreciate the running account of your recovery. It's both informative and inspirational. Thanks again. :)
Jim
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So glad your recovery is proceeding smoothly and VERY speedily, Debbi. And you are definitely quite the fashionista in your bonnet--avant garde milliner Philip Treacy could learn a thing or two from you!
It's interesting to see the changes in the procedure/followup since my surgery long ago... I didn't realize that the belly-fat/titanium mesh plug is pretty much standard procedure now, and that I'll be getting it myself (I just had my preadmission appt and final consult with Dr Martuza this week, and in reviewing my latest MRI, noticed for the first time that the base of my skull has a big old scoop taken out of it!).
And it's wonderful to hear that now there are designated facial physical therapists--I felt like quite the pioneer when I went off to work with Jackie Diehls and Richard Balliet, well before "facial reanimation" became an established field.
Most wonderful of all, of course, is that your face is expected to resolve in less than the expected time. Hooray! I'm sure you'll appreciate that tremendously.
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Debbi -
I kind of like reading what's on your blog on the forum, it saves me time since I don't have to look in both places ;)
Congratulations on being stitchless and on getting the okay to start driving. It sounds like you are recovering very nicely.
I really like "disequalibrium" - if it's not already a word, it should be! It's right up there with "wonkyhead" ;D
We'll have to create a dictionary just for AN patients. Let's get Lori on that one; she's always open to new ideas :)
Jan
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Debbi -
I'm so glad for you that you seem to be doing so well! Fantastic sense of humor too I must say!! I know it's important to keep a sense of humor,and like everything else I've noticed about you, you are just an amazing person. I guess if we can't laugh at ourselves, who can we laugh at? Hope your recovery continues to go as smoothly.
Wendy
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Lori's to do list....
Write the first ever AN Dictionary... including, but not limited to the following AN related words.... disequalibrium, wonkyhead, fat-head, metal-head, BAHA, TransEar, SSD, eye goop, eye goop removal procedures, forumite, postie, pirate socks, pick-a-weinie dogs...
With a special section on AN fashion trends..."Which AN headwear is right for which season?", "Eye Patches: Not just for pirates anymore" and "How to accessorize your hearing aid".
Maybe some restaurant pointers: "No soup for you!", "Corn on the cob? Why don't you give peas a chance instead?"
And of course, the all important "Thank you to Jan, without whom I might not have thought of this undertaking..." (I guess that means I'll have to share the profits..)
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And of course, the all important "Thank you to Jan, without whom I might not have thought of this undertaking..." (I guess that means I'll have to share the profits..)
Well, that was a given, you know I'd do the same for you ;)
Afterall, we are fellow forumites. I just LOVE that word ;D
Jan
PS - don't forget the section on the ever-popular garage surgery - complete with rolling gurneys
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Love the book idea! Let's see if we can't come up with a few more catch-phrases and maybe even a secret handshake!
Did we get Bobbly-head?
Debbi
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Debbi! I'm so glad to hear you're doing so well. Getting your stitches out is a huge milestone. It's only up from here!
Mary
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Debbi,
Don't forget to add "drip" to the list of words. I guess this is kind of like a 'trip' but without 'disequilibrium'? ;)
Note to self: watch out for NJ license plates! ;D
All fun aside, glad you are doing so well and spreading your message of hope with all of us awaiting our big day. Keep up the great work!
Trish
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SO glad to hear about your moving progress..I bet you feel really blessed to be doing so well. I know I do.
GREAT BONNET!! I love the animal theme an Dark Lord replica. I recived a teddy bear which we named 'Charlie' and a cat with we named 'Calico'. If you get a chance and would like to chuckle go to 'You Tube' and key in 'Charlie Bit Me'.. It is the cutest video of two young ornary British boys who ..well..once you play it you will know how the title became 'Charlie Bit Me'. Needless to say soon after ICU and plenty of
drugs my 'Charlie' and 'Calico' went at it imitating this You Tube video. It is amazing what humor & positive attitude comes upon one who is just so relieved to be a 'postie' ...It appears as if you are too! CONGRATULATIONS, Debbi!
Hopefully this will get you to 'Charlie Bit Me' http://www.youtube.com/watch?v=_OBlgSz8sSM (WARNING: Some Remix's r inappropriate)
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Hey, that is one funny video! I was laughing out loud. And, I can imagine the drug-induced hospital games with this, too - ah to have a sense of humor!
I really do find that finding humor helps me feel better about each day. There are certainly plenty of things that I could get upset about, or feel sorry for myself about - but if I can just see humor in it all, I know I'll be all right. Besides, if I laugh first, it gives other people permission to laugh, too, and not feel as if they are laughing AT me. Does that make sense?
My milestone (and laugh) for today was taking about a 1/3 mile walk on our road. (that would me the milestone part). The laugh was as I was strolling along, I realized that I was listing rapidly towards the middle of the road, rather like a drunken pirate! Mom and I had a good laugh and got me back to the side of the road.
Tomorrow I am tackling the car!! Yep, stay off the roads in NJ while I'm out - could be dangerous! Actually, I am going to venture out on our quiet street fiirst, then if I am feeling confident, I'm going to venture down to the local flower/produce stand. Stay tuned...
Debbi (revving the engines)
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Debbi,
Sounds like your engine is doing well so I guess that means things are going well under the bonnet! Sorry, hubby likes British cars...had to do the pun.
I DO like the animal print on your fancy bonnet!
You go girl!!!!!!!!
Mary
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I would definitely add bobble-head and fog-head to that list. Very slowly it does go away. I remember taking one of my first steps out side the hospital when there wasn't a step to take. I landed on the hood of a parked car. Drunken pirate pretty much sums up this whole experience. Only drunk with out the happy part of it.
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Debbi,
What a wonderful progress! Keep it up! Thank you for documenting it.
Eve
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My Mother's Day update...
I woke up totally exhausted this morning (yep, that would be the much-discussed fatigue everyone talks about post brain surgery...)
Had tea with my parents before they took off to run some errands; then asked Willie to take me "on the road!" I very carefully went up and down our road a couple of times before venturing out onto Rt. 206 for a quick jaunt. All highway lines stayed in focus and I felt cautiously confident. I even managed to park directly between the lines at the local mini-mall - a big event! I am not ready for much more that a quick trip at this point - still have some problems if I turn my head too fast; and the dry eye is very distracting. However, if I need to run somewhere local, I am good to go! So. that was today's milestone.
Willie decided to host the Moms for a late lunch/early dinner today - so he set about preparing a rotisseried chicken, baked acorn squash, sauteed mushrooms and a plentiful green salad with fruits and nuts. Dad served as his sous chef and I must say that the men-folk did a wonderful job! Mom, Willie's mom, Loretta and I enjoyed a wonderful meal - and I allowed myself to be waited on hand and food (no easy task for me!)
Had to take two naps today, however, because I was just so tired. Although I know fatique is part of the whole recovery process, it is quite daunting to have such a total lack of energy. My mind wants to do all these things, but my body just isn't willing. I had hoped to go visit Phil (father in law) in rehab today, but just couldn't have managed it. Sigh.
I am easing back into work tomorrow, only an hour or so. It will be good to feel as if I am returning to some sort of normal activity, even if it is very limited. I also hope to be able to get out and walk a bit tomorrow if the weather isn't rainy. Goals, gotta have goals!
And speaking of goals, yesterday I took two little walks and had company for about an hour (Kura, Lynn and Karen made the trip out from the city - wonderful medicine for me!)
So, off to bed and more rest - tomorrow is another day!
Debbi - from the streets of NU...
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Debbi -
Another milestone! Your progress is truly amazing :)
Don't get too exhausted returning to work tomorrow. It's best taken in small chunks of time. I think your plan of only an hour or two is a good one.
Good luck,
Jan
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Debbi -
Sounds like you are continuing to improve by leaps and bounds, metaphorically speaking anyway! Glad to hear you are doing so well. I imagine another step toward the more normal things in life will only make things better. Just make sure you listen to what your body is telling you and try not to overdo it.
Wendy
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WOW Debbi!!!! You are amazing.....you're going to be a hard act to follow! :)
Melissa
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Melissa-
You're getting so close! How are you doing? I'm sending you a big hug, because I know how hard these last few days are. Just treat yourself well and try to grab some quiet moments when you can.
Debbi
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Quiet moments don't happen much around my house....dog, kids.....AGH, but I'm goign to miss them so much while I'm on my little "vacation". I've been doing lots of cleaning and stocking the pantry for the hubby. Everything is in order at home and Wednesday I am having a family photo done with the kids, and we're off to the zoo for a family day before my husband and I leave for the hotel. I'm nervous with anticipation and I hate not knowing what my outcoem will be and how the next week or so will go.....I'm a planner....I like to know what will happen when....so this is rough for me!! :) :) The hosptial called on Fridaya dn they have pushed my surgery back two hours. Instead of surgery at 7:30am, we dont' have to be there until 7:30am for the 9:30am surgery.
Melissa...72 hours to go!
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Debbi:
You're recovering quite rapidly and the short drive is a definite milestone. Of course the fatigue is frustrating. I felt exactly the same way when I came home from the hospital. I'm a list-maker ('Things to Do') and I had no energy to 'do' much at all, so I delegated to my wife and adult son, as needed, but I wasn't totally comfortable doing so. It passed, as will your fatigue.
Your Mother's Day was clearly enjoyable and the food must have been great, as was the company. Your support system seems to be functioning at 100%! Debbi, you're doing fine and I'm confident that you'll ease back into your normal mode in no time, but do have a little patience and don't overdo it and risk a set-back. Your recovery is, as you know, inspirational and your updates welcomed and appreciated. Thank you. :)
Jim
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Hi Debbi,
When I read of your exhaustion AND all the things you did when exhausted, I was truly amazed!!!! You are one tenacious cookie! You go girl! I do agree though, please also take care to not over do it. We love your inspiration!
Mary
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Melissa,
You will be in my thoughts and prayers. It sounds like you are prepared. The last hours of waiting have to be difficult. Remember we are cheering you on! I don't know if told us or not, but is anyone going to be posting for you, so we can follow your progress?
Take Care! :)
Mary
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Thanks for the kind words, Melissa, Jim and Mary. Yesterday was definitely a "hit the wall" day - I was SO tired all day. Feeling a little betrer today, but still very tired. I had hoped to get out for a walk today, but it is windy and damp (and I can't tolerate the wind in my non-blinking eye), so I am going to just stay in today. No doubt I'll take a little nap this afternoon - seems to be my pattern right now.
I am planning to go out to the local diner for an early dinner tonight (I've got a hankering for an egg white, feta, spinach omelette). I have only been out once since I got home, and would like to try it again just to see how I do with noise, etc. We'll go early, so the noise shouldn't be too bad. I also want to see how I feel in terms of being self conscious about my face. Seems silly to be so worred about that, but I am. Probably making too big of a deal of it, but it is funny the things that you worry about.
I am launching into my first coaching session with a client today - she's one of my favorite clients, so it will be good.
Debbi
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Give yourself another week and there will be a big difference in how you feel. I can have a good day and then evening still feel tired some. It is maddening when you do feel alot better but not completely normal yet.
Adjusting to the facial palsy is hard. I have been thru it twice on my right side and the last time was several months to improve as had a facial nerve graft. Do not worry though that there will be damage if it does take alittle while as facial muscles are of a different type than other muscles. You just have to let the facial nerve heal so the muscles will work in time after there is healing.
You are doing super and things do improve in time. Cheryl R
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From my blog - a couple of rough days, but back on the road again...
Well, everyone said that there would be bad days along the road to recovery … I got a first hand, up close look at fatigue these past few days. After having to nap twice on Sunday, I was sure I would wake up Monday ready to tackle the world – wrong! I woke up bone-tired, which was very discouraging.
Managed to stay up until after lunch, but then slept for several hours. Then, as I was sitting there feeling sorry for myself, I had a thought… wonder if I am going through “withdrawal� from the steroids? I knew that steroids cause sleep interruption and excess energy, so it seemed like stopping them might cause fatigue? I immediately emailed my surgeon with the question, and he responded (with his normal speed) that yes, indeed, fatigue would be common as I end the steroid cycle. He said it should pass in a few days! Yay!!! I felt better immediately!
So, my Big Events for yesterday were to get back to work – I had a call with one of my very favorite clients, so it wasn’t really like working at all – and to go out to eat! Mom and Dad and I headed out for an early dinner at the local diner – egg white omelets with feta and spinach for everyone. Noise level was low, no one stared at me, and all the food stayed in my mouth (ha!) – a victory! Isn’t it funny how our perspective of success changes???
Meanwhile, Phil is still in rehab while they try to get him mobile again. His hip is still healing, but he is progressing very well. I am hoping to get over to see him this week, at least for a short visit. Maybe we can compare incisions! (Okay, I know that is pretty weird, isn’t it?)
Today appears to be a beautiful day, so I am planning an hour or so of work, then perhaps a walk outside. And, a nap …
Debbi (with my own birds chirping in my ear...)
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Debbi -
Once again, you amaze me with you stamina and positive addiitude. Everyone has their good and bad days. You are one determined lady amd I'm sure your recovery will continue to be amazing!
Wendy
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Progress continues - after a kind of sucky Sunday and Monday, the last two days have been very encouraging. I hope that all of my fellow posties have similar expereinces - and for those who are trailing me by a week or so, I want you to know that each day I see litle signs of improvement (not always fast enough to please me, but if you pay attention, you'll see the progress.) Progress is measured in inches, not feet...
Here's the latest from my blog, for those interested... ;) (Emoticon wink since I can't do it myself yet...)
It is amazing how much better I feel now - I think just having a reason for the fatigue (yea, because brain surgery wasn't good enough!) made a big difference in my attitude.
I've continued with about an hour of client coaching a day, which seems to be the right pace for me. Yesterday I succumbed to the nap again, but today I managed to power through (which I may pay for tomorrow... but what the heck!)
Yesterday I did my first post-surgical gardening - planted the basil and rosemary plants that Kura brought this weekend - boy, that felt good! I had to sit down next to the pots, becasue bending over is so NOT a good idea, but it worked well. It is very weird to be moving so slowly, but I am kind of getting used to paying attention to the limits that my body is imposing.
I really am so fortunate that my balance has come back so well. The only time I really feel precarious is if I get up too suddenly, turn too fast, or when I get up at night (the combination of eye patch and a dark room is very disorienting.)
I talked to Hope yesterday - she had surgery about 3 1/2 weeks before me, so it is really good to hear her progress . We compared notes on the whole facial thing - lopsided smile, eye that won't tear, etc. It was good to talk to someone who knows exactly what it feels like. She also gave me a tip on a different eye drop, so I dispatched Mom and Dad to Wal-Mart today in search of the new elixir (and I like it!) I've seen it mentioned elsewhere here, but for those who don't want to search it is GenTeal, moderate to severe eye gel. Lasts longer than the drops but doesn't make me all blurry - wahoo!
I went out for my first solo walk today - didn't get real far, but I felt good! I had the trusty collie with me, not that she provides any level of protection, but hey....
I am trying to make sure I challenge myself at least a little each day. I sat out on the patio for quite awhile today, listening to various noises and trying to tell where the hell they were coming from. I haven't decided how I feel about SSD yet - really soon to tell. Right now, I am just trying to take some time to process each new sensation without judging it. I am almost ready to try a more challenging dining out experience - I kind of want to test the ambient noise thing a little more now. I'm feeling quite a bit of anxiety about that, so I figure the best thing is to just put myself out there - face down the fear!!
I am feeling very at peased with things today - it's a good day!
Oh, and I ate SOUP!!! ;D ;D ;D Mom made a wonderful veggie chicken soup yesterday and I managed to eat TWO helpings without completely embarrassing myself!! See what I mean about the little things???? Can sushi be far behind???
Debbi - chillin' in NJ
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Debbi -
You had a beautiful day for a little light gardening, glad to hear you enjoyed it! You have a graet attitude and I'm sure that is why you are having so much success. I'm sure the SSD thing will take getting used to and even be a downer sometimes but I'm sure you'll overcome that too. Keep up the good work.
Wendy
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The steriods had the same affect on me, only I had a lot of restless nights because of them, then headaches because of the restlessness and was too stubborn to take the pain meds. Once I came down from the "steriod high" things got better but it was gradual and probably
took a couple of weeks. My Doc said it just does that to some people. Sometimes I would feel as if I am my old self and start doing stuff and even did the gardening thing .but what I found was if I did too much then I would struggle with fatigue for a couple days after and sometimes headaches. It has been 7 weeks past surgery and I am much better in that arena. I just can't stay consistently at my old busy active self for more than a few days without fatigue. One way or the other God's just not going to allow me to overdo it!! Your body has reacted much like mine through this event ...but then why wouldn't it, we had the same surgery... Ahh Daahh!
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Thanks, OhioAlso - your comments are very helpful. I had my first headache today, which freaked me out a bit. It probably wasn't much in the scope of things, but it was a pretty intense pain on the upper right side of my head. I took a couple of Advil which seems to have dulled it. I've never been one to get headaches, so of course it alarmed me. Interesting that it may be part of the steroid withdrawal. I feel better knowing that.
I also appreciated your comments about feeling really fatiqued for a day or so if you overdo - I am still trying to find out where that line is for me. Wherever it is, I definitely crossed it yesterday :P - because today was one of those very tired days. I am really going to have to learn to be more patient, aren't it? ;D
Debbi ... holding my head...
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Debbi:
It's fascinating to read about your steady progress. I think your fatigue is relatively normal and the steroid withdrawal seems to present a logical rationale for some of it. I admire the fact that you challenge yourself every day. Although you have a way to go yet, you're making slow but steady progress and certainly have the right attitude. Thanks for helping many folks understand AN recovery a bit better, from your real-life perspective. Your account is an invaluable addition to the forums and appreciated by many, including me. :)
Jim
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Give your self time. I am 4 weeks today from surgery. I find if I go somewhere and gone all afternoon,then I will be tired in the eve. It is only when you are farther out in time and then think back about how you felt at a certain time earlier that you really realize how good you are doing. Won't be long and you'll be 4 weeks!
Cheryl R
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Debbi -
learning to be patient isn't easy. I'm 46 1/2 and I still haven't learned ;D
Cheryl -
hard to believe you are 4 weeks post op - it seems like your surgery was just yesterday - easy for me to say ::)
I'm so glad you and Debbi both are doing well.
Jan
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Cheryl,
I totally agree with you - you don't realize how much progress you've made until you look back at a few weeks earlier and realize - hey, I couldn't do this back then!
When I look back on a year ago, it amazes me the changes and progress. And when I look back on those few pictures I allowed my husband to take of me in the hospital, I really see how much better I am now. Man, I looked bad!!! :o
Lori
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Debbi -
Sorry to hear today was not a good day for you. I guess as time goes by you'll get better at gaging how much you can push yourself. In the meantime, patience is yoru best friend. I know it's not easy but let what your body is telling you be your guide. Hope tomorrow is a better day.
Wendy
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Well, I sprung a leak last night and am off to the doctor this morning. I put my hand up to my incision as we were laying in bed last ngiht and felt moisture and goo - eek! Willie cleaned it all up and then phoned Dr. Roland who called us back wihting 5 minutes. Possible I have a little infection or maybe a CSF leak - anyway, I'll know more in a few hours and will keep you posted...
Debbi - leaking in NJ...
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Oh, Debbi .. :( Sorry to hear of this complication. Keep us posted as to your progress. Prayers coming your way.
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OH NO!!!!!
Well pray that it is something else entirely or at least something that is corrected easily...
Prayers coming your way,
K
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Hi Debbi -
I am so very sorry to hear your latest news!!! I hope it's nothing too serious and that some antibiotics at most will clear this up for you. I will check back later and see what's going on. In the meantime, you are in my prayers and alll my fingers and toes are crossed for you.
Wendy
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Hi Debbi
I hope all goes well with the doctor today. I know how frustrating that has to be. I know it's easy to say -- and I don't think it will -- but please don't let this get you down. You've had such a great attitude and have been an inspiration for those who have followed you. There was another member of this group who had a leak several months ago and she is doing fine today. I can't remember her forum name. Tammi, are you still logging on? Maybe Debbi can get in touch with you.
Anyway, I wish you the best, Debbi.
David
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Oh Debbi - no springing leaks!!
Hope all is well and easily fixed. Keep us posted.
Lori
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Debbi -
sounds like you are having a little bump in your road to recovery. Like David suggested, don't let it get to you. Keep your good attitude.
Hope everything works out today. Let us know what the doc says.
Jan
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Hi, Debbi:
Just checking in to see how the leak was resolved. I trust it was not a serious problem.
I know you'll handle this annoying incident as you have your surgery and recovery: with aplomb. :)
Jim
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Hi Debbi
I was just checking to see how it went today. I hope all is well.
Sam
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Hi again-
Leaky Debbi here ... We made the 2 hour trip into NYC in the pouring rain this morning and were met promptly by Dr. Roland (who is a hero in my book). He deduced that I was leaking some fluids and possibly some of the fat (damn, I knew that fat should've stayed in my belly where it belonged!) Anyway, NOT a CSF leak, which was the good news!
He cleaned it all up and them put some stiches back in, along with another glorious pressure bandage. :D So, I think this means I get an extra entry in the bonnet contest? I am to keep the bonnet on until Sunday, then off it comes - and back to NYU next Friday to get this batch of stitches out. Meantime, I am on a course of antibiotics to stave off infection.
The incision site is pretty painful now (enough to drag out the percoset again for the night, I think). Guess all that tinkering around aggravated it. However, as bumps in the road to recovery go, this isn't that bad, isn it? Still consider myself one lucky gal.
Doc told me to take it very easy for the next couple of days, then resume "normal" activity. So, I took that to heart and spent the afternoon napping in bed.
But, do you want to hear the BEST news??? He said that he is already seeing signs of improvement in my face - small, but definite! I was so thrilled to hear this that I actually managed to close my bad eye (yes, I was going for a wink, but didn't quite work out!) I was feeling giddy when we left. So much so, in fact, that I wrapped a scarf around my bonnet and insisted that Willie take me to a diner for a quick meal. I am sure I looked like some kind of festive escapee from an institution - wild scarf, staring eye (that occasionally closes) and lopsided smirk - accompanied by my gallant knight Willie!
So, that's my story for today. I am goign to try to insert a picture of my new bonnet below. My face looks pretty grim here, but I was so tired when I got home that nothing was working well - and I know you guys won't judge me!
Debbi - fashion plate of NJ.
http://s280.photobucket.com/albums/kk167/debifulco/?action=view¤t=516SecondRoundofStiches1.jpg (http://s280.photobucket.com/albums/kk167/debifulco/?action=view¤t=516SecondRoundofStiches1.jpg)
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Hi Debbi -
Love the new bonnet! I'm sorry for what you've gone through in the past 12 or so hours, but am so relieved for your sake that it's not as major as you thought it might be, as I am sure you are too. I think you look great!! I'm glad to hear you're going to be taking it a little easier for the next few days. Before you know it you'll be back to your old self (from a couple of days ago anyway)
Wendy.
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Debbi -
Glad all is okay. I'd say your bonnet is more of a headband - very sporty! Maybe if you carry a tennis racquet around with you, people will just think you played a hard game!
Take it easy now!! Doctors orders!
Lori
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Yes, I agree w/ Lori, that it's more like a headband and really does look quite sporty! Hope you feel better tomorrow and can now continue w/ your recovery. You've really done so well...
Cindy
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Debbi,
I agree that the headband is quite fetching. What I really like about the picture, though, is that there is an oh so subtle hint - you have to look carefully to catch it - of a glimmer of amusement in the eyes. You're smiling about this! ;)
Drop it down a gear, and carry on with the fine recovery. Just a little bump along the way.
Steve
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Debbi -
I have to admit I'm somewhat jealous. I had 2 "bonnets" also, but I had to have both AN surgery and BAHA surgery in order to get them ;D
Glad to hear you didn't have a CSF leak and that the doc was able to fix you right up. The news about the improvements in your face is outstanding!
Lay low for a few days and nap.
Take care of yourself,
Jan
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Debbi~
Just because I specialize in "bumps along the way" in no way means that you should too!!!! So glad it wasn't a CSF leak!! Answered prayers right there!
K
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Just because I specialize in "bumps along the way" in no way means that you should too!!!!
And here I thought I was the specialist in bumps along the way - not on my AN journey, but life in general ;D
Jan
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Glad to hear you are back on track and yes it is just a small bump ...not quite like the one on your head. Sporty
yes, but I think it deserves a row of feathers. Yes, 'Head Chief' for brave & courageous recovery 8)! (Not to mention
going to the diner!
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Hi, Debbi:
I'm so pleased with the news that (a) you didn't have a CSF leak (and that your incision was easily repaired) and, (b) the doctor noted some signs of improvement in your face. As you're barely a week past surgery, this is fantastic news! I can understand why you were giddy. l would have been, too. You earned a diner outing. BTW: The bonnet looks fine and so do you, Debbi.
Now, please try to take it easy (or do a good imitation of taking it easy) so you can heal properly. Oh, and Tell Willie he's been nominated for 'AN Spouse of the Year'. Willie is a great example of how to support a spouse who has undergone AN surgery. :)
Jim
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Hi Debbi -
Sorry that you had to go through a scare like that. You seem to handle things with such humor and patience though. You are a brave lady! I'm happy to see you are back home and that it wasn't a leakage issue. WHEW!
Keep us posted on how you are doing.
Kimberly
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Kimberly~
How are YOU feeling?
K
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Debbi
I'm sorry for everything you went through but I'm glad to hear your doing well. Get plenty of rest.
Sam
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Hey Kaybo -
I'm feeling pretty good, thank you :) Working on trying to slowly get back into things! How are you?
Kimberly
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Hey Kimberly - how are you feeling? Hope your recovery is going well.
All - glad you like my new bonnet. Like the suggestion of festooning it with feathers; maybe I'll try that today. ;D Maybe I'll take a nap first...
Slept about 10 hours last night - stitches are hurting, but advil seems to be doing the trick. Tomorrow we get to take the bonnet off - yay!!
And, now I am going to go stare at my face to see if I can see any changes .... :-*
Debbi - the Carmen Miranda of NJ...
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Debbi-
You'll need to add fruit to be Carmen Miranda. Might be a bit messy taking those naps!
Tamara
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I think the "Carmen Miranda of NJ" would need some Jersey tomatoes, Jersey corn and some blueberries.
My brother-in-law is a farmer in Jersey - he can probably hook you up. ;D
Lori
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Debbi...glad to hear no CSF leak. I love the sporty headband. Great to hear of changes in your face. I am 8 weeks out and have noted changes weekly. While some of them are subtle, they are definitely there. The crease around my mouth is now symmetrical on both sides, which the doc noted to be a good sign. I never thought I'd be happy to have symmetrical "age lines" but in the scheme of things, any sign of improvement is a good thing.
Hang in there. Don't overdo.
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Funy, Ohio - my mom and I were just talking about that. It's a weird thing when you are anxiously waiting for your mouth "crease" to come back! Never thought I'd be happy to see an age line... ::)
Lori - yep, I'll have to grab some Jersey Veggies if I really want to pull of this Carmen Miranda thing... or maybe I'll just settle for taking the darned thing off tomorrow and inspecting my new stitches... :o
Debbi
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Well, we took the turban off this morning ... and the damned incision is still leaking a bit, this time at the top. Emailed Dr. Roland right away and he said to clean it well with peroxide, keep a sterily dressing on it, and watch. He asked about the discharge (won't go into that bit of grossness here...) and seemed pleased as it does not indicate CSF leak. However, he said if it doesn't resolve I will need to go back to the OR to have it surgically cleaned and reclosed - ugh. Please keep fingers crossed that this will not be necessary.
On a positive note, he said I could wash my hair - so I once again have clean locks...
Oh, and because we don't have enough going on, our dishwasher overflowed all over the kitchen... Arrgghh.
Debbi - clinging to clean hair...
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Debbi~
Oh my goodness - crazy! You can talk to me about the drainage -- unfortunately I understand that all too well!! LOL!!
*fingers crossed...prayers lifted...*
K
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Debbi -
did your doctor say why you have this leak and how often this happens to patients? I'm really just curious - okay nosy :D
I've been posting on this forum for almost a year now and the only leaks I recall reading about have been CSF leaks. This is a new one to me and I just wondered if it's fairly rare or if it happens a lot.
I'm keeping my fingers crossed that they won't have to surgically reclose it.
Jan
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Debbi -
Maybe you could spray some Windex on it - it worked in "My Big Fat Greek Wedding"?
I'm sorry to hear about your dishwasher. I had to laugh briefly though, because it brought back memories of when my son tried to run our dishwasher a few years ago - I had just had knee surgery so he was trying to "help". He used the liquid dishwashing detergent instead of the dishwasher stuff. I was trying to balance like a flamingo on one foot on a wet tile floor that had bubbles about a foot deep as far as the eye could see. I still don't know how I escaped without breaking my neck. On the bright side, the floor never looked cleaner!
Lori
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Thanks, Kay - I don't want to win the drainage award, believe me! Yucky.
Jan - not sure what caused this, although I will have to ask (usually I am full of questions, not sure how I missed such an obvious one!) Trust me to have an uncommon glitch. The doctor did say Friday that some of the fat was working its way out - pretty high on the grossnes scale.
Lori- Ah, windex!! Why didn't I think of that?? That is one of my all time favorite movies, btw! And, yes, I did the liquid detergent trick - once. What a sudsy mess that was.
You should have seen the dishwasher when I walked into the kitchen this morning - water was literally gushing out the front of it. I yelled for my husband, screaming something water everywhere - what he shared with me later was that he thought I was talking about my head and his heart nearly stopped! ;D My poor hubby has really been through enough stress and trauma lately between me and his dad (broken hip one week before my surgery and still in rehab...)
Oh, and btw, I now have yet ANOTHER bonnet! Willie decided that trying to tape the dressing to my head wasn't working so He held it in place with an ace bandage wraped around my head like a headband. I have given up all hopes of ever looking like a normal woman again... (Okay, but apparently, I am good for few laughs...)
I am hoping for an uneventful few days at the Northern Compound...
Debbi - The turbaned pashette...
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Debbi~
I gave up looking like a "normal" woman 12 years ago!
K
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Debbi:
Sorry to learn about your 'drainage' problem. I want to thank you for your tact in sparing us any 'gory' details. I really hope it can be resolved without surgery but I can't imagine re-stitching the wound would be a major job - but that's easy for me to say.
'Normal' is a relative term but if you mean looking the way you looked prior to your surgery, I'm sure you'll qualify very soon.
Hang in there - and keep your plumber's number on Speed Dial. :)
Jim
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Hi Debbi -
I'm so sorry to hear this happened again!!! I guess Willie is getting lots of hands on training for being a personal nurse. I hope you are feeling okay and am gald to see you can still laugh at yourself. Sorry about your dishwasher leak too. I guess all of us have had that experience one way or another. One day my husband wanted to see what was going on inside the dishwasher while it was running. He opened the door, but somehow kept the button pressed so that the dishwasher thought the door was closed. The entire kitchen looked like it had taken a shower, which I guess it had. Wish I'd taken a picture of that!!!
Hope everything is OK. I'm keeping all my fingers and toes crossed for you.
Best wishes,
Wendy
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The Monday update ... still having discharge - emailed a photo to the doctor. He wansts to give it another 24 hours and if it is still oozing, back to the hospital, probably for 48 hours. UGH! Please keep fingers crossed that it clears up before tomorrow as I REALLY don't want to go back to the hospital again...
I am trying really hard not to feel discouraged, not sure I am succeeding. I will make it my mission to find something good today...
Debbi - feeling a bit down in NJ...
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Debbi~
This stinks...so sorry. It almost seems the better we are doing the more challenges thrown our way!
Go dig in the dirt & then take a nap!! I bet t hat will help!! ;)
K
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Debbi:
I started having drainage from my incision about 19 days post op. It was gross, kind of yellowish and had an odor. (Hate to be too gross here, but it might help). It turned out to be an infection and they had to go in and remove the metal mesh, clean it out and sew me back together. Actually, before I got admitted to the hospital the incision actually opened up and you could see the metal mesh. After discharge I had to be on very heavy duty IV antibiotics at home for six weeks.
I don't mean to frighten you, but don't mess with this. It could be serious.
Best of luck
Linda in WV
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Hi Debbi,
I am just sending a note to you to tell you I am cheering you on. I am sorry you are having some issues but I feel confident with your spirit you will be okay. You are such an upbeat person, it seems only realistic you would have some days that are down. Hang in there!
Hugs,
Mary :)
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Thanks, Linda. This is very useful. And, I appreciate you being specific about the discharge. If it is not better tomorrow morning, I will be going back to the hospital - Dr. Roland is concerned that there may be an infection, even though I am not running a fever and don't have some of the other symptoms. And, as much as I dread possibly going back to the hospital, I agree that this is nothing to mess around with. You and Kay have both gone through bad experiences with infection and (no offense) I don't want to follow in your footsteps! ;)
It was a stroke of brilliance that my mom suggested taking a close up picture of it this morning - the doc seemed to find that very useful. It grossed me out, but what the heck.
Meanwhile, as a little bit of humor - Willie, my beloved husband is about the most squeemish guy on earth (can't even watch Gray's Anatomy without geting grossed out!) And, if you could have seen him these last few days carefully cleaning my wound, describing it it detail to the doctor ... well, no wonder he is the love of my life. Of course, as he reminds me, I am now in debt forevery!!! 8)
Thanks again for the words of wisdom, Linda.
I'll post back later with updates... hopefully good ones...
Debbi - with a yucky head...
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Darn Debbi !!!
Sorry to hear you're stilll leaking. I will continue to keep all my fingers crossed for your. Digging in the dirt and taking a nice long naps sounds good to me too. Don't get too discouraged. The power of positive thinking can work wonders.
Hoping your leaky incision turns itself off today.
Wendy
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Debbi -
I think the picture was a great idea. Kind of saved you one trip to the doctor's.
Hopefully you won't have to go be stitched back up, but if you do, it shouldn't be nearly as bad as the surgery.
Keep your chin up :D
Jan
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Debbi:
I'm so sorry the darn incision continues to leak but at least it isn't CSF and can probably be repaired fairly easily, even if you have to re-enter the hospital for a few days, probably as much for observation as anything else. You sure don't want an infection.
I'm sure you'll find much to be positive about today, Debbi. After all, you've had a successful surgery and seem to be recovering fairly quickly, even allowing for this one annoying complication, which will be soon be resolved. Of course, you'll likely have to slow down a bit, but time passes quickly and you'll be back on track soon, I'm sure. Hang in there. :)
BTW: Your husband sounds like a great guy. I'm glad you appreciate him. :)
Jim
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Thanks, all, for the kind words. I took some time to count my blessings today (thanks to Zeek for that idea!) and am feeling better. Even if it turns out to be an infection, I am confident that it will clear up. Meantime, I am taking it very easy and having my "team" (Mom, dad, and Willie) change my dressing, take pictures, etc. Sent the mid-day pics to the surgeon and he was encouraged to see that it seemed a wee bit less red.
I guess every road worth traveling has an occasional bump, right?
And, BTW, have I mentioned recently how very, very glad I am to have found this forum - and all of you - so early in my journey? You are all so amazing and every time I read posts, I come away feeling hopeful, encouraged, and inspired.
Debbi - taking it easy in NJ...
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Debbi -
It's just too bad these "AN bumps" have to be on our heads! Ouch!
Glad you're taking it easy. Tell Willie to keep up the good work with the Windex and the sterile dressings - sounds like he's doing a great job!
Lori
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Debbi~
We're glad you found us too - you are just a ray of sunshine!! You still have a great attitude, even with the bumps!!
;D
K
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Debbie,
I am so sorry to hear about leaking! As annoying as it might be, I am sure it is a temporary thing and you will heal. On the positive note, I got my crystal ball out today and all I see iare chopsticks, sushi and lots of wine in your future! ;D Hang in there, it will get better!
Eve
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I guess every road worth traveling has an occasional bump, right?
Absolutely ;D
Jan
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Hi Debbi -
Sounds like you have a great support group there at home too You are such a resilient person I'm sure this bump in the road won't set you back too much. In the meantime, relax and let your family pamper and spoil you. Long leisurely naps sound good too, especially if one of your furry friends are keeping you company. I know my cat, Oscar always makes me feel better when I'm feeling down. Before you know it, you'll be back to gardening and driving again!!
Wishing you all the best!
Wendy
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Wow, Debbi, so sorry to hear this sequel to your surgery is stubbornly dragging on! I hope it will get wrapped up, without an infection (or a speedily resolved one) soon... Please get lots and lots of rest--sounds like a good time in your life to lie very very low and let the healing thoughts being sent your way take effect...
The wonderful silver lining to all this (besides that it wasn't a CSF leak) is that you continue to have improvement in your facial function (SO excited to read further back in this thread that your eye has almost closed! So many post-surgical problems are on the way to being dodged right there!)
And, of course, that you are (re)discovering just how deep your bond with your usually squeamish husband is... (I totally identify with this--my husband can't watch the weekly gross-out scene on "House" without covering his eyes or even LISTEN to a graphic description of a medical procedure/problem, but I have confidence that like yours he'll have my back without passing out if anything comes up in June!)
Looking forward to hearing good news from you soon...
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Ok, Debbi.... enough! We want you well, dang it! I know you do too! Hang in there and know I'm cheering you on! If I have to put my CK mask back on to try to bring you a healing giggle, well, dang it! I'll do it! Whatever it takes to make you well!
xo
Phyl
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Okay, I just did another quick post elsewhere - I am headed back to the hospital today. Will have Willie update this thread later. Ugh - I hate having a setback at this point.
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note on other post...
K
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Oh, Deb....Not again, Just can't seem to stay away from that place ( I know u just want another bonnet!)
Hang in there and keep us posted.
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Sorry, Debbi, but really good that you and your doctor have stayed on top of this. Will be thinking of you and your family and wishing for a quick and final resolution to this leak thing.
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One more update - Dr. Roland told me I could wait at home until they get a bed for me. He'll admit me today, put me on IV antibiotics; then tomorrow I'll go the OR (probalby not until afternoon) where they will re-open and clean the incision. They'll culture everything and hopefully I can come home Thursday. Tonight I'll just hang in the hospital, hooked up to things. Sigh.
Well, on the bright side, I am going to be a shoe-in for the bonnet contest - this will be my THIRD bonet!! Lucky me.
Stay tuned...
Debbi - at the bump in the road, and trying to get past it... :P
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Debbi~
You WILL get past this...just think, a nice relaxing stay with someone to wait on you...of wait, you have that at home w/ Willie and the parents...
K
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Debbi -
don't look at this as a setback. Just look at it as another thing you have to do to recover.
You'll get through this with the help of your family and your positive attitude.
I'm thinking you deserve at least Honorable Mention in the bonnet contest - if not flat out First Place 8)
Wishing you the best,
Jan
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Hi Debbi,
Since you introduced gross into this topic, I thought I would mention that you could be having maggot therapy to clean out your incision. Here is the Wikipedia article, you can also google for more pictures: http://en.wikipedia.org/wiki/Maggot_therapy
Seems that maggots are exceptionally good at cleaning away dead tissue, leaving the living tissue untouched. The only snag is you need an iron stomach, because this is truly gross!
Now you can count one more blessing - you aren't having maggot therapy today. ;D
Steve
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EW!!!!!!!!!!!!!!!!!!!!!!!!!!! :-X
S-T-E-V-E-N!!!!!!!!!!! *dopes slap Steve*
New Moderator... go figure... ;)
*runs quick... or as quick as my poor legs will take me!* ;D
Hi Debbi,
Since you introduced gross into this topic, I thought I would mention that you could be having maggot therapy to clean out your incision. Here is the Wikipedia article, you can also google for more pictures: http://en.wikipedia.org/wiki/Maggot_therapy
Seems that maggots are exceptionally good at cleaning away dead tissue, leaving the living tissue untouched. The only snag is you need an iron stomach, because this is truly gross!
Now you can count one more blessing - you aren't having maggot therapy today. ;D
Steve
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Maggot therapy ???
GROSS :o
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Debbi,
So here of this set back. Please know we are all with in spirit.
Trish
(less than 2 weeks to go!)
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Debi: Having de ja vu. When this happened to me I went to ER on Sunday. They put me on the surgery schedule Monday as a "work in". It was 8:30 PM before I got to the OR. On Tuesday they put in the PIC line so I could do my IV antibiotics at home and I came home on Wednesday. The surgery wasn't bad. The worst part for me was that they put me on Flagyl to counteract the yeast overgrowth issues associated with antibiotic therapy. That stuff made me really nauseous the first couple of days, but after than everything was fine. I had to hook up twice a day to let the antibiotics run and the worst part of that was having to sit still.
Sending positive thoughts and good wishes your way.
Linda in WV
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Steve,
The hospital I worked at used leeches instead of maggots. :o I always made sure they were put away wherever you store leeches before I'd go in to see a patient. But don't worry, Debbi - I think they might use more conventional methods on your head! But if you see people wading in the Hudson with jars full of leeches on your way to the hospital, I might question the doctor about his plans! :D
Good luck! Get better and take it easy!
Lori
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Debbi:
I think you'll do just fine with this relatively minor but necessary procedure. Fortunately, its a short hospital stay this time.
As for the 'bump in the road' metaphor....try to go around it. Besides, I suspect that now you'll win the 'bonnet' competition by default. :)
Jim
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Hi Debbi,
Good thoughts are being sent from AZ.
I hope they have discovered instead of maggots or leeches they now use rose petals!
Really though, I hope it is a minor glitch and you will be released quickly.
Hang in there!
Mary
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Sorry to hear you must spend some additional time in the hospital, Debbi--glad that the problem was caught before the infection caused a fever, though, and that your stay this time will be a very brief one. Healing thoughts being sent your way; hope you'll be comfortably back at home before you know it!
:)
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Debbi
Sorry to hear it. I will reinterate what Jan said. Please don't look at this as a step back. Look at it as one more recovery hurdle. On the bright side of things -- you have a doctor who responds to email!!!! And I do think that was a great idea to forward a picture. We need to make a procedural note of that for future posties.
Best wishes
David
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Hi Debbi -
I just got in later than I expected tonight and what with alll the usual evening rush just finally had aa chance to finally check in on you. I am so sorry you had to go back to the hospital, but I'm sure you'll be fine. Your doc sounds great and I'm sure he'll take good care of you. You can have all ten crossed fingers back (I hope they bring you luck
I'll be thinking about you and you'll be in my prayers. If you keep getting all these bumps along the way, you're going to need a huge ice pack to bring them down.
Wishing you and yoru family a good night and you in particular good luck in taking care of this thing. Keep up the posiitive thinking. I believe it helps!!!
Wendy
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Wilie back on the job....
As of 8:30am today, Debbi's doc was happy with what he's seeing to the extent surgery is not a given at this point! We're keeping Debbi on the "surgical rotation" (OK, I watched ER once or twice) just in case we, sorry HE has to go in. So, we're just sitting around in Deb's room until later today when we know for certain what the plan will be.
I only wish Debbi could have come up with a different plan. This seems too extreme just to get a good cup of NYC Starbuckies....
WAB
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Willie -
thanks for the update on Debbi. We're all hoping that the doc doesn't have to stitch her back up, but if he does, I'm sure she'll come through it with the same positive attitude she always have.
Wishing her the best,
Jan
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Thanks Willie...I was just thinking about you guys!! Tell Deb to drink some NYC Starbucks for me! ;D
K
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Hi Willie -
Some people will just do anything for a good cup of coffee!! Glad to hear that surgery is not a must at this point. I hope it stays this way and Debbi's problem resolves itself without any other interference. It sounds like you are holding up well. Your sense of humor may just rival hers. Keep up the good spirits and tell Debbi we're all pulling for her. Still have all my fingers and toes crossed for her!
Wendy
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Willie and Debbi give each other a hug from me. I am hoping that soon your news is very good.
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Hi All -
Debbi here posting from my hospital bed at NYU. Dodged the surgery bullet yesterday - I seem to be responding well to the broad spectrum antibiotics they're givng me, so Dr. R decided NOT to open it up. Instead, we are waiting for the cultures to come back (yeah, my future is hanging in a petrie dish) to determine the next step. At that point, the infectious disease doc will be able to concoct just the right antibiotic "cocktail" for me. Looks like I should be able to go home tomorrow, with any luck. Whether I go home with an IV line or pills remains to be seem - but I don't care as long as it beats the infections into submission!
So, I am now wondering if my current hospital stay is going to rival my surgical stay in duration - wouldn't that be crazy?
Anyway, once again, I feel quite lucky to have dodged something more serious - it looks like they will be able to get rid of the infection without too much trouble.
Keep the good thoughts coming my way, though, okay?
Debbi - hangin' at the hospital...
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Debbi~
We cleaned up our room yesterday and seem to have some leftover IV's (that are still good) - we have Invanz and Vancamyacin (sp?) - I would ship it to you. Also an IV pole and some nifty little mesh things that you put around the PICC wiggle tails so they don't flop around during the day...if you are interested!
No, really, I hope that you can control your issues with oral antibiotics.
Dave just told me about STephen Curtis Chapman's little girl - I've got to go Goggle it...heartbroken for them...
K
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Glad to hear the meds seem to be doing the trick. Hope you do get to go home tomorrow...and get to stay there!
Thoughts are still w/ you guys,
Cindy
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Hi Debbi -
What fantastic news!!! I'm so happy for you!!! Sure hope you get to go home tomorrow. You all must be so revieved -- now keep up the good work. The power of positive thinking (and some really good antibiotics) will give a nasty infection a good swift kick in the rear end every time.
Wendy
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Debbi:
Thanks for the encouraging update!
I'm so glad you don't need surgery and that you'll be home very soon. I trust your positive attitude, sense of humor and determination to be well will help you enormously as you continue to recover. :)
Jim
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Great news Debbi. I'm so glad they caught in time and you didn't have to go back to surgery. If you have to have a PICC line; it's nothing to worry about. My biggest problem was trying to take a shower without getting the darn thing wet. Hopefully, they oral antibiotics will kick butt for you.
Linda in WV
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Debbi~
You might already be, but make sure that you are taking acidolpholus...I am actually taking Florajen3 which is supposed to be even stronger. Even with all of the meds, I haven't had too much trouble with my stomach.
Just a thought...
K
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Thinking of you Debbi... we are all handing in with you and the petri dish.
cocktail anyone?!
hang tough and keep us posted!
Trish
11 days til surgery!
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Me again - still from bed 1164 at NYU...
The infectious disease doc (euw, couldn't they come up with a better title?) came in awhile ago - results from petri dish aren't really conclusive so he is going to continue using a broad spectrum antibiotic. He'll consult w/Dr. Roland, but looks like I'll be discharged tomorrow with a PICC. I believe they'll have a nurse come by several times to draw blood, then I'll see Dr. Louie (Infect. Disease) in a couple of weeks - which means more trips in and out of NYC ...
I'll confess to being a tad wigged out about the whole PICC thing, but Linda and Kay, you've already made me feel better. It sounds like they're going to send me home with everything I need - but will know more later. And, I know where to turn if I have questions!
Meanwhile, I did take advantage of my time here - I asked Dr. Roland if he could arrange for me to see a facial therapist! The therapist came up this morning and gave me some simple exercises to do in front of a mirror every day - and he warned me that I might feel frustrated by my face's lack of cooperation especialy for the first few weeks. Try as I might, I can't get any movement from my right eyebrow - but I am determined! Anyway, seeing the therapist was a small victory that I needed this week - now I feel like i am still movinng forward rather than stuck in neutral.
I know that this whole infection thing is ging to slow down my recovery a bit, but I still feel like I am doing well. (Okay, I am trying to cheer myself up a bit here - I kinda hit the wall for awhile today.)
Thanks again for all the support - you are one more thing on my list of things to be grateful for!
Trish - hang in there and don't forget to breathe - I'm sending lots of good stuff your way!
Debbi - trying to wiggle an eyebrow in NYC...
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Debbi,
Say hello to Dr. Louie for me - he was my infectious disease specialist in 1988. Some things don't change! They did 3 spinal taps on me and Dr. Louie did the culture in the petrie dish! I remember him very well but he probably does not remeber me. It was about the same time and he had terrible allergies. He gave me culture results while sneezing, blowing his nose and coughing!
It is a good thing you are going home. There is just no place like it and you will be much more comfortable! Hope there will be no more infection for you! Best wishes always,
Eve
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Debbi,
You realize Dr Louie is my husband's nick name :P, so it can't be him because we live in Ontario.
Anne Marie
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Hi Debbi,
I am glad you will be able to head home soon. I hope it is all much easier with nice steps forward. It is good to hear the facial therapist has started working with you. That is going forward and something to hang your hat (or should I say eyebrow) on!.
Take care,
Mary
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Debbi -
When we suggested some gardening, we didn't mean to try growing something in a petrie dish!! Unless of course, you're trying to make your own penicillin.
Hope you're able to sleep in your own bed soon! Get outta the hospital - there are too many sick people there!
Lori
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Hi Debbi -
It's great that you'll probably be going home tomorrow! I'm sure this has been an ordeal you could have lived without. It's great you still have such a positive attitude. Just goes to show, you can't keep a good woman down. The news about the facial therapist is fantastic. Before you know it, you'lll be symmetrical again --YAY!!! (well maybe not before you know it, more like after a lot of hard work, but it'll be worth it). Still keeping all my fingers and toes crossed for you.
Best wishes
Wendy
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Debbi -
it's good to hear that you managed to dodge the surgery bullet :) I'm sure you are relieved; I am too!
The therapist sounds like an added bonus - something good came out of this second hospitalization after all.
Hope you are able to go home soon.
Jan
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Hi Debbi: The PICC line is a piece of cake. No more painful than blood draws. I had a home health nurse who came to my house on a regular basis. The agency also had on-call people 24/7 in case I needed anything of had any questions. The nurse came the same day I came home and taught my husband and I how to set up everything. It was a little overwhelming at first, but everything will fall into place quickly and you'll get into your own routine. The blood work is necessary to make sure the antibiotics aren't depleting your white blood cells and to make sure the antibiotics are at a therapeutic level.
I was on vancomycin, rocephrine and flagyl (spelling is probably wrong). Like I stated before the Flagyl made me quite nauseous the first 48 hours, but went away. It also made the metallic taste in my mouth worse.
If you have any questions please feel free to ask.
Good luck
Linda in WV
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You've been through a lot, Debdi. I am generally a positive person too, but I've found sometimes I just "Have To Hit The Wall"..as I am only human. Allow it and it will soon cease. Thoughts & Prayers coming your way....
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Knock, knock.
Hey, Debbi, are you home yet ???
Hope so,
Jan
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Hi All-
I'm here - home, that is! Yesterday was a VERY long day - had my first IV of the day at the hospital - the vein in that arm was just about shot, so it was long and fairly uncomfortable.
While that IV was still dripping, the "limo" guy showed up with a bed to take me to radiology to get the PICC line installed. I must say that it was quite unpleasant - probably because I really didn't know what to expect. They just used some lidocaine to numb things up (which, IMO, doesn't really work well). Mid-way through, I got really anxious and the next thing I knew, I was crying! I was so embarrassed. There I was, laying there with a thing in my arm, with my left eye crying for all it was worth. I think it was just an accumulation of everything - I haven't cryed at all since my surgery.
Anyway, I had sort of regained my composure - until they wheeled me back to my room and I saw Willie - then I lost it all over again. At least I wasn't sobbing and blowing boogers ::). However, I know for sure that my right eye doesn't produce any tears at all - and my left eye seems to be able to make up the difference!
They kept me at the hospital to run the second drip at 4 pm - so we finally pulled out of the hospital parking lot at 7 PM last night!! Yay!!!
This morning, the VN came over to go through the IV thing with us - you're right Linda, it is really pretty simple. All of the supplies were delivered yesterday, so we have everything we need. Willie and I (with Mom and Dad witnessing) did the IV tonight without any glitches. I've got these really cool IV things that kind of look like lemons - or hand grenades. They come wiht a line attached that I attach to the PICC and then it just drips out over about 60-90 minutes - no IV pole, or regulator or anything. The nurse had never seen one like it before, but loved it. I have a little fany pack so that I can walk around with it. I'll try to get a picture tomorrow.
Okay, so this is defintiely a little setback, but hopefully these anti-biotics will do the trick. Dr. Louie said that we won't know for sure if it worked until I go off them, which should be in about 2 weeks. Sigh.
However, in the scope of GOOD news - yesterday as I was practicing trying to move my face in the mirror at the hospital, I got a little twitch below my right eye, on my upper cheek. I was so amazed that I tried it several times before yelling out to Willie to LOOK AT THIS!! yep, I have the first tiny little bit of movement - and I can control it! Dr. Roland said that the mid part of my face (cheek area) would be the first to regain movement, so this seems to be consistent.) I was so excited! I still can't move anything else, but, damn, am I proud of my little twitch!
I slept most of the day today - but plan to be up and about more tomorrow. A friend of mine is coming up from the Princeton area (about 2 hours) to visit tomorrow. She hasn't seen me since I was in the hospital, so am anxious to see if she can see chamges.
Meanwhile, a question for the other PICC folks - my arm where they put the PICC in is still VERY sore today - sore to movement, and sore to touch. Did you also experience this? It is a bit better today, so I expect it will be even better tomorrow, but it is still a bit un-nerving.
Hope everyone has a great weekend - I'll be back tomorrow!
Debbi .. PICCing in NJ...
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Debbi: Glad to hear you are home. I'm sorry your PICC line insertion was so traumatic. My PICC site was sore for about 3 days. They told me to use ice packs. Your IV hookup sounds great. I was stuck in one place till all of my antibiotics ran which took about 90 minutes.
Linda in WV
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It's home sweet home, even with a PICC. I had to Google to find out what that is; now I know more about it that I need to. In a word, ouch.
As the song says, keep your eyes on the prize. You and Willie will get there. You are going through some stuff right now, so be sure to take it gently. Dream of those wines and cheeses and hams you were discussing with Lorenzo; those days will be back.
Best wishes for a smooth recovery from here on out.
Steve
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Debbi -
I'm glad to see you are home again :) and sorry to hear about your hospital experience :(
Hopefully it's all water under the bridge now. The IV "lemon" thing sounds great, especially with the mobility it provides. I had to have IVs of gamma globulin when I was pregnant with my twins to prevent miscarriage (long story, there) and it was a real drag having to basically sit in a chair with an IV pole for roughly 2 hours 3x a week for a couple of months. I'd love to see the lemon/hand grenade picture if you don't mind sharing it. You are such a trooper :)
The facial movement is a wonderful milestone; very exciting!
Have a great day with your friend from Princeton,
Jan
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Debbi, I am sorry to hear of your having to go thru all of this. I had a CSF leak 2 weeks after my surgery in 2006 and it was very discouraging to have to go back and end up with more surgery in my case. Things will improve in time so hang in there. Having PICC is better than having to be stuck numerous times which happens to me. I mentioned a PICC but they did not want to do one. Just curious but do they ask people who have them at home to measure the uppper arm on a routine basis. We did at where I worked every shift but since I was never around anyone who has one at home was jusr curious. I am not surprised at some soreness at the place where it was inserted but do know to let someone know if you have pain in the upper arm or chest.
Cheryl R
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Hi, Debbi:
It's good to know you're back home, even with the PICC line, which, while not fun, seems to be manageable. Remember, this is only temporary. Your good attitude and solid support system will certainly help see you through all this. Not to worry about crying, Debbi. You've earned a good cry. Besides, It's an emotional release that no doubt did you a lot of good. Enjoy your rest and your visit and have a great Memorial Day holiday! :)
Jim
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Hey Debbi~
Just remember: "Don't PICC your friends noses!" ;D
My arm was very sore and i couldn't move it for about a week, but all that was b/c they hit a NERVE when they were inserting it! It was like a lightening bolt shot all the way down my arm to my hand & then back. Apparentely, it was then resting on the nerve so every time I moved my arm, I got little shocks. The Dr. said that they could put it in again (NO, THANK YOU!) or I could just not move it -- I opted for that!
You deserved a good cry!
SOOOOOO, glad to hear about your movement. Believe me, I know about getting super excited about the tiniest of movements!!
Glad you are home,
K (wishing I would've had a lemon...)
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Happy Memorial Day, All!
Well, after sleeping most of the first day home from the hospital, I am now trying to get back to some sort of "normal." Yesterday my friend Ellen came up from Princeton for a visit, which was great. Unfortunately, I was totally exhausted after hours and had to lay down and sleep (I'm not much fun these days!).
Last night, I wanted to try to tackle the IV by myself, so I got my sterile area all set up and set to work. The hardest part is that the "nozzle) is located at the inside of my elbow on my right arm (and I am right handed), so I have to try to unscrew it using my left hand only. I find that if I get it wedged between two fingers I can then use one other finger and the thumb to unscrew it. Awkward, but it works. Anyway, I did my morning IV all by myelf (oh, aren't I a Big Girl now!).
I am also becoming adept at wrapping my right arm in platic wrap and taping up the ends in order to shower. Actually, I am sure I am quite a site - eye patched shut, arm wrapped up, big black and blue incision on my stomach.... wow, what a hottie.
This morning, I got Willie to drive with me to Lowe's (I drove, bleary eye and all) so that I could buy several flats of flowers to plant. I picked out my flowers, and off we went. Even made a hot-lap through the grocery story (talk about sensory overload - yikes!) I spent about an hour outside planting - good for the soul. It's a beautiful day, so perfect to dig in the dirt.
My eye is driving me crazy - seems that I have to put drops in at about every 10 minutes. REally a nuisance - does everyone else with facial issues have the same challenge? I'm freaked about driving more than 15 minutes, because my eye gets so scratchy.
So, for those who want to see the "lemon/hand grenade antibiotic dispenseer, here's the link to the photos: (Dont' worry, nothing gross at all!)
http://i280.photobucket.com/albums/kk167/debifulco/525DebwiththeAntibioticLemon1.jpg (http://i280.photobucket.com/albums/kk167/debifulco/525DebwiththeAntibioticLemon1.jpg)
http://i280.photobucket.com/albums/kk167/debifulco/525theantibioticLemon.jpg (http://i280.photobucket.com/albums/kk167/debifulco/525theantibioticLemon.jpg)
Picc'in my arm in NJ.... Debbi
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Hi Debbie: Listen, if your eye is drying out that frequently, you may want to try using lubricant once in awhile, or at least at nighttime, remember, you need to protect your cornea from drying out, this could cause a corneal ulcer - I use Refresh PM exclusively (of course my paralysis is chronic whereas yours is hopefully/probably temporary (my facial nerve was cut). I also need to use the Niteye Bubble - it's a plastic oval shape bubble with adhesive all around it & I wear it every night for sleep (it'll add to your 'glam' look !); it works like a moisture chamber/greenhouse effect.
Okay, continued healing my friend
Always good thoughts, Nancy
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Debbi -
you never cease to amaze me! Doing your IV all by yourself - incredible :)
Also, cool pictures - the "lemon" looks quite interesting and very portable.
Jan
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Debbi:
Happy Memorial Day to you, too and thanks for the holiday update and the photo link.
You really seem to be coping and doing well with the PICC line and the other issues you're dealing with. In a year from now, this will likely be just a memory but until then, keep your great sense of humor and determination to successfully work through this AN thing.
You're an example to many and we're all behind you; some of us with prayer and all of us with hope, virtual hugs and good vibes. :)
Jim
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Hi Debbi -
I'm so glad to hear you're home and already sounding like your usual self. It's like I've said about you before -- just can't keep a good woman down. You look great, by the way! I would never guess what you've been through from your picture. The lemon/handgrenade thing looks interesting. Do you have to carry it around or does it attach to a pole? Obviously, I have no idea of what I'm looking at. Sending lots of good healing thoughts your way!!!
Best wishes,
Wendy
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Hi Debbi,
I agree with Wendy, you look great holding the lemon thing, despite all you have been through. Remarkably chipper, I would say.
Nancy and Daisy and others can give you the poop on the eye thing; All I know, from Dr. Eric Steele at our local ANA meeting, is that moisturizing the eye is very important. For daytime, he recommended not using the drops that have preservatives, they can irritate the eye if you use them very much. For night time, eye goop is the way to go.
Have a good week.
Steve
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Hi All-
Nancy, thanks so much for the wisdom about dry-eye. I am using a gel at night (sometimes Refresh PM, and other times something similar) and I also use it occasionally during the day. Mostly I use the single use drops during the day as they are the only type that doesn't sting. Probably the fact that my eye doesn't close all the way yet is contributing to the dry eye. It is just very frustrating - and, also I do worry about letting it get too dry and impairing my vision. Ugh.
Jan and Jim, thanks for your kind words. The PICC isn't so bad, once I get the hang of getting the screw thingie working. I have to "flush" the line before and after, and follow iwth a syringe of heparin, so it looks like I am prepping for some kind of surgiccal event each time. The good thing is that the nursing company provided everything, including pre-loaded syringes, so it makes it very easy and fool proof (hm, well, I guess that remians to be seen!) ;D
Wendy, thank you! The lemon thing is a self-deflating device, so it doesn't need to be hung from a pole. I actually just put it in a fanny pack while I am "plugged in" so I can walk around and do things. The only thing I have to be watchful of is the long line that connects the lemon to the PICC - don't want to snag that baby on anything! Each does takes about an hour, so I just have to make sure I am home at 8 AM and 8 PM. When the dose is done, the lemon deflates almost completely and can be "unplugged" and thrown in the trash.
As a sorta-funny aside ... I have my own red hazardess material container now - for the syringes. It's kind of creepy and cool at the same time! Bet I'm the only person on the block with one of THOSE in my dining room! Ha!
Well, at least I am compiling some funny stories that Willie and I can laugh about in our old age ...
Debbi
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Debbi -
Those red biohazard containers can really make a lovely center piece - try adding some greenery around it.
I had the same problem with my eye post-op. It got to the point where I was putting drops in every 10 - 15 minutes and had to use the night time goop during the day. I'd recommend a good opthamologist - I went to an eye plastic surgeon. I had my tear ducts cauterized and a lateral tarsorrhaphy and haven't had any pain or scratchiness since. I don't use drops during the day at all. I still use the goop at night, but at least I can see during the day. If it feels scratchy, your cornea is probably scratched, so you should have it looked at before it gets worse. Your doctor may have someone he recommends, or maybe he knows someone closer to you so you won't have to travel into the city.
Lori
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Debbi~
I was on the 8 and 8 schedule also but at night I had to do 2 different meds/bags. I also had the red bio-bags - so pretty! Loved it when we had to take them back in to the Dr.'s to dispose of them. Felt kind of funny taking our trash to the Dr.!!!! ;D
K
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Hhmm - love the centerpiece idea - now if only it were near Christmas I'd be right in style, just add a little greenery...
I am going to schedule a visit with an opthamologist just so that I know I am doing all the right things for my eye - good suggestion from several of you!
Had my first blood draw this morning - pretty easy since they just used the same line.
Kay, I can't imagine having to add more to this regimen - at least I only have the vancomycin!
Well, I am back to part time work today which feels good. Since I set my own schedule with clients, it is very easy for me to set up my day so that I have ample time to rest. As a coach, I find that the experiences I am going through personally really help me in terms of working with my clients and helping them to get past roadblocks. Ah, so nice to have silver linings...
Debbi ... breathing in NJ...
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Great that you're feeling up to doing some work already, wow! But, don't do too much, we mother-hens are watching...
Seems you're definitely back on the track to healing - hope it continues to go well for you now. You need some nice normal days, I'm sure.
And thanks for all your continued detailed updates,
Cindy
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hey Debbi...
Good to hear to you are still moving forward and making progress despite some setbacks. You are a tough cookie. Thanks for keeping us in the loop.
I see you mentioned you are visiting and opthamologist... Was this recommended?
I actually have a long outstanding appt with mine (i see her every year since glaucoma runs in my family and mom got it in her late 30s!). My appt is booked for the 20th of June. I was thinking to cancel since I will only be a few weeks past surgery, but now i am thinking that maybe i should keep it since she might be helpful to assess any eye issues (early on). Thoughts??
hang in there... keep breathing... and smiling!
Trish
(less than a week to go!!!!!!!!!!!!!!!
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Debbi -
Congrats on being back to work part-time. It's so nice to be able to get back to your regular routine post op. Don't overdo it :)
And Trish - less than a week to go. Hang in there; waiting isn't always easy.
Jan
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Trish - I'd keep the eye dr. appt if I were you. Can't hurt to have someone make sure things are okay so you can try to avoid problems before they occur.
And Debbi - time for your nap. Stop working. ;D
Lori
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Hi All-
(And, yes, it is about time for my nap!)
Trish - I'd probably keep the eye appt, too. At the worst, you can postpone it if you aren't feeling up to it after surgery (and if you come out without any of these pesky eye problems.) Meanwhile, take some time out for yourself this week. I think the last week was definitely the hardest for me - lots of anxiety, short temper, short attention span, etc. If there are activities that you find particulary enjoyable and relaxing, take time for them this week. Nourish your body and your mind as much as you can - and before you know it, this will be in your rear view mirror. In the meantime, know that you are very much in my thoughts and prayers!
And, now I am going to take a nap ...
Debbi ... Zzzzzzz
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You look great, by the way! I would never guess what you've been through from your picture.
My sentiments, exactly! The incredible strength and humor you have faced this challenge with really shine through...
Like Lori, I had a tarsorrhaphy (done while I was in the hospital for the original surgery) and, about 6 months later, a cauterization of my tear duct. It was experimental at the time, done by the wonderful, straight-out-of-med-school opthalmologist I'd just switched to (after 6 months of constant, maddening dryness, eye patch wearing, keratitis, and even a corneal abrasion under the care of a less on-the-ball eye doc)--I am forever in his debt, as it really changed my life...
However, if you are showing signs of facial function recovery, I doubt you'd want to go with either of those procedures, as I believe they're not reversible.
The best thing you can do is lubricate liberally and always shield your eyes outdoor (BIG sunglasses during the day, clear lenses or "pale" sunglasses at night to keep your eye protected from wind). I tried many different drops and found the only one that really had "staying" power was celluvisc--the others "wore off" in a matter of minutes. I use Refresh PM at night.
I developed the keratitis soon after my surgery, before I discovered that my eye did NOT like anything with a preservative in it. So read the labels carefully, too, to make sure whichever lubricants you use are preservative free.
Hope you enjoy beginning to resume working again. But do take it slow, OK?
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Debbi -
Glad to hear you are feeling so much better and getting back to normal activiities, within reason. Make sure you don't overdo it. Cindy is right -- the mother hens will be watching1!!!
Best wishes,
Wendy
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Boy have I been out of it! I have gone and missed this whole thread! My puter is up in my studio and I haven't been working much since I got my disability--a psychological barrier, I guess, so I haven't been checking in much.
Holy spit, girl! You gotta major case of what we pirates likes to call the dreaded ICKYHEAD! Now this pirate has got a whole computer file called ickyhead, honest to God! It's all the pics from me hospital stay and surgery including the bonnet. And boy, you translabbers got nuthin on us midfossas as far as looking like Frankenstein!
(http://i235.photobucket.com/albums/ee60/Captdeb_photos/LA017.jpg)
Part of my recovery was spent with me old sailing buddy, Captain Marge, who laid me head down on the kitcken table twice a day and squirted the incision with hydrogen peroxide twice a day, then slathered it with neosporine. Living in the tropics and getting plenty of "boat bites" taught us well.
So relax, keep squirtin' them meds in, eat your veggies and know that healing thoughts are being sent your way by a whole bunch of people here in cyberspace!
Feel Better and Be Well Soon!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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Holy Cow, Capn Deb - that's some scar!! I didn't know what the mid-fossa incisions looked like - way higher on the head than us translabbies.
Hey, glad to know the technical name of my head crud - ickyhead!
Debbi - current queen of the ickyheads...
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Capt Deb -
thanks for posting your scar picture. I've never seen one like it before. All I can say is "Yikes" - no offense!
My retrosigmoid scar is nothing like this. It's fairly close behind my ear and my hair covered it very nicely soon after my surgery. By the time I had my BAHA implant - nine months later - you couldn't even see the AN scar unless you looked very closely.
I know Steve is giving out awards for bonnets. I say you should get one for scars ;)
Jan
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Thanks to everyone's good advice, I now have an appointment with an opthamologist for a week from Saturday. I really want to make sure that someone is monitoring my eye, and that I am doing all the right things to take care of it. Good grief, it's hard enought being deaf in that ear, certainly don't want to add damaged cornea to the list!
I also have an appointment for next Thursday for a facial therapy session at the Kessler Instutute. Looking forward to that, as I hope to get some specific pointers while I am there.
BTW, for those who followed the Bosu Ball saga prior to my surgery - I am once again taking the opper hand! I stood on the BB for about a minute last night (holding tight to somethign the whole time, but hey...) It is VERY challenging to stand on it, but strangely exhilerating, too! Gotta find victory wherever we can! I'll get a picture of it - better yet, of my on it - in the next day or so. Can the balance beam be far behind...
Debbi - beating the Bosu Ball into submision...
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Hey Debbi,
Glad to see you are in good spirits and humor!!
Thanks for your wishes of taking it easy... I WISH! Cali has been sick (vomitting) intermittently since last Thursday (gastro virus i guess). I thought she was fine by Monday and was driving her to daycare and myself to work when she barfed all over herself and the car seat. I ended up taking the day off. Tuesday morning she barfed again, but i took her in and she was fine all day (with a change of clothes). Then she barfed again last night so she is at home today with my dad and his wife (in town from Arizona... good timing!!).
I think a week or so in hospital might do me some good as it will give me a break from the stresses of full time work, full time home owner, and full time mommy to little sick Cali. I am pretty exhausted these days!!!!!!! I need a holiday!!!
Hanging in there... dreaming of camping (go Kimberly!).
Trish
(so far still on for June 2 surgery!
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Hey Trish -
Glad to hear from you, but SO sorry to hear about Cali! I guess this is one way to keep your mind off the impending surgery, huh? However, maybe a little drastic! Hopefully she'll quite hitting the return button on her food, allowing you to get some rest before Monday! Meanwhile, I'll keep sending healing thoughts to you BOTH!
Debbi - live revolving around the IV schedule...
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Debbi -
good news about standing on the Bosu Ball - you are a braver woman than I am :)
I actually rode my "outside" bike this past weekend and didn't even wobble. I'm pretty proud of myself.
I had tried it a few months post op and kept riding it into the bushes at the side of the road, so I gave up and resorted to only riding my "inside" (stationary) bike.
At one point I was yelling to my son "I can ride a bike again" while my neighbors who don't know I had brain surgery stared at me :D
It's the little things in life that can make you feel so normal again.
Trish -
I hope Cali feels better :(
Jan
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Hi Debbi - Glad to hear you are feeling even better. Standing on a bosu ball seems like it would be a challenge without having had surgery. You're a braver woman than me!! Good for you. Glad to see you are back to your usual high spirits.!!
Wendy
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At one point I was yelling to my son "I can ride a bike again" while my neighbors who don't know I had brain surgery stared at me :D
It's the little things in life that can make you feel so normal again.
And that can bring a smile to all of your AN friends. :D
Steve
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Hey Jan-
Wow - a bike! I can't even think that far ahead right now. The mere thought sends shivers of terror down my spine... Had to laugh about your description of riding into the shrubs - I'm sure that is exactly where I'd end up if I tried that right now.
I am heading out to my first official business meeting this morning - I chair a board locally and we are having a meeting this morning. So, I have made myself look as good as possible, got up extra early to get the IV done, and am heading out shortly. This will be my first business outing AND my first solo car trip! I am already planning the nap...
Debbi - revving my engines...
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CMP...a tarsorrhaphy is reversible. I have a "permanent but reversible" tarsorrhaphy now. About 2/3 of my eye was sutured shut and it has now joined my lower and upper lid together. My eye is still dry and needs treatment, but anything is better than the painful corneal abrasion I had.
I can make it some days without any drops and others, especially if I am in the wind or have more air exposure, it needs more TLC.
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Hi Debbi -
Glad to hear you are doing better! Good luck today at your meeting. It does feel great to get out into the world and back to somewhat of a resemblance of a normal routine.
You are a very special lady with a lot of courage and such a positive attitude. :)
Kimberly
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Debbi -
good luck at the meeting today; knock 'em dead.
I can ride one-handed on the bike, but I'm not ready for no hands yet ;)
I also need to start running again, so hopefully knowing I can ride a bike will give me the encouragement I need.
Jan
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Debbi~
Good Luck today - so glad you getting out there and getting on with your life -- Go Get 'Em Girl!! Good thing you are already planning a nap!!
K
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Good grief - did anyone besides me notice that Jan is riding ONE handed on her bike!!!!?????
Makes my 15 minute solo car ride seem wimpy! Well, I was a bit of a hit at the meeting - everyone told me how great I looked, to which I replied with my one-sided pirate smile. Seriously, it was good to get out, and got me past a big hurdle (in my own mind) of
"what will people think when they see my face?"
I was feeling so good that I stopped at Rite Aid on the way home and stocked up on eye supplies. At the recommendation of several people here, I bought some Celluvisc single use drops - tried one of them when I got home, and LOVE it!! Thank you, thank you, thank you! BTW, it was cool to be shopping all by myself. Can a trip to Macy's be far behind? 8)
Okay, so the appliance repair guy will be here this afternoon, so I think I'll sneak in a nap now. I have resiigned myself to napping even though it feels quite decadent.
Jan, keep setting the bar - you rock!
Debbi - cruisin' in NJ (but afraid of the bike still)
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Hi Debbi -
Good for you!! You go girl!!!! Yes, I did notice Jan is riding her bike with one hand.
Jan - That's an amazing feat. I haven't had surgery and I can't do that!!!
Wendy
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I hope Jan is wearing a helmet ;D
I believe a forsee a boost to our economic woes. Debbi driving, feeling like shopping, eyeing Macy's (with her non-dry eye anyway ;) ) Sounds like she could do some serious damage with an all day shopping extravaganza! (and a power nap to follow)
Debbi...I was also concerned how the people at work would respond to my facial palsy and my tarsorrhaphy. My first day back couldn't have gone better.
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Hate to confess it, but no helmet for me - I don't make my kids wear one either :-[ I know - bad mom!
The bike thing is a great milestone, if I might say so myself, but let's keep in mind here that I am 12 months post op minus 2 days :)
I probably could have reached this milestone earlier, but I just didn't have the time or motivation - since I can ride my stationary bike at midnight in my pj's if I'm so inclined ;D
Jan
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Jan:
Don't minimize your accomplishment of riding a bicycle one-handed. I think thats quite impressive.
I don't have a bike to ride. Not since I sold my Schwinn to some kid named 'Chip' when I turned 14 and realized that riding a bike (then) was looked upon as 'not cool' and something a teenager just didn't do. So, I traded my trusty bike for that elusive 'cool'. Unfortunately, I don't think I ever really captured it, although I liked to kid myself that I did. :)
My wife and I, in a fit of misguided health consciousness, bought a cheap pair of 'His & Her' no-speed bikes with 'coaster' brakes back in the early '70's. Unfortunately, unlike the flat streets of suburban Long Island (where I grew up and logged probably hundreds of miles pedaling my bike), Connecticut - where I've lived for almost 40 years - is very hilly. Riding a bike was just too much work, as we're not the rugged outdoorsy types (surprise, surprise!) Those now-antique bikes haven't been used for at least 30 years and are 'in retirement' in our attic, under a mound of other cast-off remnants of abandoned good ideas of years past.
So, with that sorry history of post-adolescent bike riding, I really appreciate anyone over the age of 20 who rides a bike regularly...for fun...and without a helmet. I never wore (or even considered wearing) a helmet when I was tearing up the suburban streets of Long Island on my Schwinn, back when I was a kid, so I can't criticize you for eschewing one, now, Jan. I'm not so sure I would make my own kid wear a helmet today, so I certainly don't consider you a bad mom, either.
I'm pleased to see another AN patient experiencing a good outcome and living their life as before. It's encouraging to newbies and all of us who are either doing the same or trying to. Fortunately, I'm in the former group. Keep moving forward, Jan, with or without a helmet. :)
Jim
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Hey, Jim - bike or not, I think you are WAY cool! (As the youngsters would say). ;)
And, Jan, I won't tell about the helmet thing - I'm just in awe that you're riding a bike - you're way cool, too!
Deb ... trying to be cool
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Thanks for the encouragement Jim & Debbi. I mentioned the biking milestone to my doc this afternoon who thought it was great and suggested that I was now ready for the Tour de France LOL
I think somewhere in everyone's past they have had a "fit of misguided health consciousness" - great description, Jim :D Mine was purchasing a Soloflex for $300 secondhand from my brother. I actually had it shipped from his place in NJ to mine in IL. It sat untouched in my basement for about 14 years until I recently sold it for $50 on craigslist to a man who was gracious enough to come to my house and dismantle it.
Good intentions - I'm full of them ;D
Jan
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Ah, yes - and how many of us have laid claim to a clothes rack (er, I mean exercise bike) in our pasts??? I still find that walking is the best ting for me ...
So, Mom and Dad pulled out this morning, headed back towards Oregon. It is quite strange to look out in our driveway and not see their 35 foot motor home parked there - their departure has left an empty space both in the driveway and my heart. It was so good having them here during the last 6 weeks - they have been such a huge support and help before, during and after the surgery. I've said it before, but it's worth saying again - I am very lucky. I will be hoping that they have good weather and safe travels as they wind back across the country!
I've got a few hours of work today, which will keep me occupied. I've even factored in time this afternoon for a nap, if I need it. I guess I have accepted the fact that I can't always do as much as I think, at least not without resting a bit. However, I am definitely feelling better again! I have at least one more week on the vancomycin - I see Dr. Louie next Weds and hoping he'll be happy enough with progress that he'll pull the plug (pun intended) on the IV.
Can any of the PICC people comment on the procedure for removing the PICC line? Is it done in a doctor's office/hospital/home? Does it hurt (yes, I'm a wimp!)
Debbi
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I am assuming that the nurse who comes to change the dressing will just remove the PICC but also is your dr wanting to see you? There is a chance that he would want to see how your incision looks and then he would do it. They are just pulled out and can't remember anyone acting like it hurt a great deal.
You are lucky your parents were able to there so long with you and you will miss them.
Cheryl R
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Debbi~
Getting the PICC out was so easy and did not hurt at ALL!! However, it kind of wigged me out b/c they just kept pulling & pulling -- they weren't kidding when they said it goes to your heart!!! ;D
K
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Thanks, Cheryl and Kay - you are my experts in all PICC related questions! I actually don't have a great deal of confidence in my HHC nurse, so am thinking that I will ask my regular GP if his nurse can remove it. I would feel much safer that way. The HHC nurse seems very uncertain at times, and I have had to remind her several times to sterilize things! (Of course, I am a bit paranoid now!) Since she is only changing the dressing and taking a weekly blood draw, I feel it's manageable for the moment, but I really don't think I am comfortable having her remove the PICC line.
Of course, I am jumping way ahead on all of this - I will have a better idea next week how much longer I need the IV...
Debbi
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I am FINALLY antibiotic-free after 6 weeks!!!!
K
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Kay- that's wonderful!!! I'm doing the Happy Dance for you!! :D ;D 8)
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Hey thanks -- there are pictures on the blog!
K
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I know we're breaking into Debbi's subject, but K, I just saw your latest pictures - what took me over 6 months to accomplish you've accomplished in record time ! !
Your smile already looks like mine today ! ! I am so happy for you. Mona Lisa smiles ROCK ! !
Always good thoughts, Nancy
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Kay, I just went to your blog and posted a comment there - but it is worth repeating here ... you look AMAZING and gorgeous!!! I am so impressed with what you doctors have done and you look unbelievable. Anyone reading this, if you haven't gone to Kay's blog, go there immediately and take a look at her beautiful face!! That's an order!!
Debbi - my half smile is working overtime for Kay
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Happy dance in Arizona!!!!!!! :D
Mary
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K does look fabulous!!!
Jan
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Yippee - Kay finally kicked the drugs!!!! :D
Lori
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Lori~
It really wasn't a hard habit to break...
;D
K
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Saturday morning in NW NJ ... and a question for all your posties...
I have a steady pain that starts at the back of my neck, on the right side and kind of radiates down that side of my neck. It actually seems to be worse now than when I first got home - wondering if anyone else has experienced this. It's a bit like a stiff neck, but feels a little different (or maybe I am just being paranoid...)
Debbi
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Debbi:
As a 'Postie-Toastie' (surgery and radiation) I can't say that I had such pains, post-op. However, others have and I'm sure they'll be posting their experiences here. I believe that your position on the operating table can have something to do with it as well as the fact that the incision runs in the same general direction. I trust that you'll be getting more useful information here, soon. Of course, you may just be paranoid. Just kidding! :D
Jim
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My best friend for those became my thermophore heating pad. It gives you a moist heat treatment which relaxes the muscles. Also get Willie to give you a little neck massage a few times a day if you can. Part of it is those neck muscles compensating for the vestibular loss and working overtime. Neck "stiffness" and sub-occippital head pain was the first indicator of my post-op headache syndrome. But I'd already had a few real whopping headaches at 3 weeks op-op so I wouldn't get too worried.
I got my Thermophore at a drugstore that carried home health care and orthopedic supplies.
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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Capn Deb - I dub thee Dr. Capn Deb!! I emailed Dr. R this morning and he suggested ... hot compresses! Same thing. I actually have a moist heat pad (you nuke it for 3 minutes) for my back, so am using that on the back of my neck and upper back - it feels good.
Went to Wal-Mart AND Pet-Smart this morning - talk about full-sensory experiences! A couple of crying babies had me twirling about like a top at WM; and barking dog had me doing the same at PetSmart. AT one point, I just grabbed Willie's arm and closed my eyes.
Because that wasn't exciting enough, we then went to the grocery store where I thought I might pass out from all the visual and audio stumulation! :P Because I am constantly putting drops in my right eye, my vision in that eye is always blurry - so not only am I deaf in my right ear, but now I can't see worth a darn from my right eye either! What a mess!! ::) Oh well, at least I am laughing about it all.
My father in law was released from rehab yesterday (after 5 weeks), and has already decided that he is going to go up and down the stairs! Willie is over there now trying to talk some sense into him ... Life certainly isn't dull...
Well, hope everyone had a wonderful weekend.
Let's all send Trish lots of prayers and postiive thoughts tomorrow!
Debbi - twirling about in NJ...
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And one more thing...
When A Hamburger is NOT a Hamburger...
Having not had any red meat for well over a month, I decided that yesterday was the day to have a burger - enter McDonalds (I know, when I fall, I fall hard...)
Here's a special note to those who may suffer from facial paralysis in the future ... DON'T try to take a bite out of the burger! Even though I believe I've regained some slight mobility in my mouth, my right lower lip can't extend to allow a big old bite of burger in. Thank goodness I wasn't attempting this fete in public! I ended up tearing my burger into bit sized pieces so that I wouldn't have to try to wrestle a bite away from the "mother burger." I am only thankful that I didn't attempt Subway!
Good grief, the fun just never stops, does it?
Debbi - very disappointed in my mouth!
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Hi Debbi -
You do deserve a break today, but apparently McDonald's wasn't the place. Sorry you didn't get to really enjoy the burger experience you were looking forward to. I hope it at least tasted good. This too will come with time and patience, as you know. Right now, I understand your disappointment and frustration but it will get better.
Thanks again.
Wendy
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Debbi -
May I suggest you stay away from bagels in a public place also. Sandwiches of any sort are definitely out to get us! They can be conquered, but you have to be creative and sort of use the other half of your mouth to shove it in - but be careful - it hurts when you bite your bottom lip! :o
Lori
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Thanks Wendy and Lori-
Well, at least I provided myself with a laugh! Oh, Lori - I hadn't even thought of bagels - what a nightmare that would be, especially if you have cream cheese... eek! I did have the experience of my lower lip getting sucked into my mouth along with the burger, by the way - good to know that I have the sensation of my teeth biting into my lip... guess all's not dead there after all!
Wendy, hope this isn't scaring you! I'm actually having a laugh about this whole eating thing.
That my husband still finds me sexy after all of this (hole in my head, incision in my belly, IV line hanging out of my arm and burger hanging out of my mouth) is nothing short of amazing!!
Debbi - longing for sushi...
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Debbi~
Even for those of us that have dealt with this for quite a while have trouble and it provides HOURS of entertainment. Just yesterday afternoon, I was talking to one of my best friends while waiting to get Emee from musical practice. She walked to the kitchen at church w/ me to get some more ice water. She was telling me a story and I took a big gulp and dribbled it all down my front -- she started giggling & then I started laughing (w/ a mouthful of water) -- thank goodness I was in front of the sink and just spit it all out!! I will say, I think it has all gotten worse since my T3 surgery b/c I have MORE movement on that side & I haven't learned to copensate for it yet!
K (going out to buy a sippy cup...) ;)
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That's funny, Kay - and I can totally relate! When I was first home from the hospital, I took a slightly too-large mouthful of bottled water .. and it shot right out of my mouth in a nice arc and darned near hit my mom. We both gave each other a stunned look and then burst into hysterical laughter. I just can't imagine not having some moments of hilarity along the way!
Debbi - in great company...
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Another food to add to the don't-try-this-in-public category: Sushi! Unless it's rolled into very teeny bites, you'll end up with wishing you hadn't speared it with your chopstick... :-\
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Hi Again Debbi -
The indignities these ANs subject people to are amazing. Good to know everyone sees the humor in them as I am just beginning to get a hint of what is still in store for me in the near (?) future. Wishing youre new adventures and successes in find dining.
Wendy
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Hi Debbi -
You do deserve a break today, but apparently McDonald's wasn't the place.
Funny, Wendy :D
No offense, Debbi :)
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Sippy cups and bibs for everyone! The bibs are not for us, but for the people crazy enough to sit across the table from us while we're eating or drinking.
Jan, I think we can start some generic AN gift packages with this....they're not just for us BAHA-ers. Hmmm... sippy cups, straws, bibs and LOTSA napkins.
Lori
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Sounds like a plan, Lori.
And for those with young children, the gift package can do double duty ;)
I think you're on to something!!!
Jan
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Debbi -Once again, not reading what I type leads to new typos -- What I meant to say is wishing you new adventures and successes in fine dining.
Loi and Jan --You two are hysterically funny,but is it really like that? And if so, yes Debbi, it is scaring me a little, but I can certainly see the humor in it too. I guess it's a good thing i enjoy laughing at myself (sometimes I amaze even me at how silly I can be) as much as anything else, if this is the kind of thing that's in store for me.
Jan -- A quesion for you regarding riding your bike. My daughter left her bike at a friend's house which was three blocks away tonight . Since she was already in bed when she realized this, I went to get it. Now, I don't mean to brag, but since I walk like a slightly drunken sailor (weaving, but not staggering) I normally would not have attempted to ride it, but tonight I was feeling adventurous (I got this ided from you, and yes, I realize I haven't had surgery yet.but it was still something of a challenge, under the circumstances), Still, I was proud and amazed I managed to ride the three blocks home in the dark and not fall off or over. When I turned though, the whole world tilted and whirled (never experienced that before). Did that happen to you? If I'm feeling brave tomorrow, I may take my own bike out for a spin -- I mean just the wheels on the bike spinning, hopefully not me. My doc says challenging the vestibular system makes it work better and at this poiint, riding a bike is a challenge.
Wendy
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Hhmm - liking the the idea of an AN "starter kit" ... Lori, this may be the big windfall you've been looking for - quick, get a patent!
Wendy - you GO girl! I am reduced to a sniveling heap by the mere site of my bike right now.
CMP - yes, I was thinking about sushi the other day and got a clear (and ugly) picture of what THAT would look like! Wouldn't you know that my favorite local sushi place specializes in mega sized rolls ... :D
Well, you know there is one good thing that comes from this whole food issue - Mom always told me to eat slower and take smaller bites ... now I have no choice! ;)
I'm off to see Dr. Golfinos today - got my list of questions, and got my scabby head to show him... (Lucky him!)
Debbi - NYC bound
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Wendy -
despite Lori & my joking around, there usually is some truth in what we are joking about. I can't give you a lot of input on eating issues because I only had facial nerve damage for a day or two post op. But I can tell you that when I had the issues, I too had water dribbling down my chin :) It was similar to trying to drink water after having a dental filling when your lip is still numb. Lori, Debbi, and Kaybo would know more about eating issues than I do since their facial nerve issues were for a longer period of time than mine were.
As far as the bike goes, here is my experience. I didn't have any balance issues riding my bike pre op, but then again I wasn't riding it regularly at that time, so I probably wouldn't have noticed it. I tend to stick of my stationary bike since I can ride it late at night when the kids are in bed. I also tend to read while riding; something I obviously can't do on a regular bike :D
Post op balance is a challenge; even if you are currently walking like a drunken sailor. Therefore, balancing on a bicycle is also a challenge. My first experience with my bike was about 4 months post op. I was wobbly and found that I needed intense concentration to not only stay vertical but also to view my surrounds while riding. I found that if I didn't pay attention and concentrate on riding in a straight line, I rode "off to the side", and yes, I actually did ride into some bushes.
The good news is that balance post op gets better all the time, and that exercise - even walking - will help. Your body adjusts very nicely. IMO part of the problem is also vision. It's hard to describe, but I'd liken it to body-eye coordination (similar to hand-eye coordination). Initially it's tough to make your body and eyes work together. It's something we usually take for granted, but post op I had to relearn it. I noticed it when I first started to drive post op and again while trying to park my car between the lines in a parking spot.
If I would have kept up with the ride, I'd imagine I would have been able to successfully ride it long before I did. I just put it on the back burner since it wasn't a huge priority for me.
Jan
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Debbi -
I'm glad I'm not the only one who writes lists of questions for my doc. He must feel like I inundate him with questions; but he never complains. In fact I think he'd probably fall over if I didn't have at least a page of them every time I see him. The man has the patience of a saint :)
I don't know how docs deal with things like scabby heads. Guess it's just part of their day and they can pretty much just ignore the "yuckiness". I felt terrible for my doc the day he had to remove the stitches after my AN surgery. I was grossing myself out just walking around with hair that hadn't been washed in 10 days and was slimy with bacitracin. I couldn't imagine having to actually to touch it and remove the stitches :P
Guess that's why I'm not a "medical" person ;)
Good luck in NYC,
Jan
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Debbi~
Good Luck at the Dr. today -- hope you get good news about the infection!
K
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Wendy~
We don't want to scare you...maybe you won't have too many issues. However, aside from a strong faith and a super support group, HUMOR and laughing at myself is what has gotten me through this thing! It is kind of like when my father was still alive & struggling with Alzheimer's - you either laugh at things or sit in a pile crying at how different things are!! I would rather laugh (even though it is OK to cry sometimes!)!! One day at a time...you WILL get through this!!
K ;D
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Quick update - saw Dr. Golfinos today and he is happy with progress. I haven't seen him since I was in the hospital the first time, so was anxious to see his reaction to my face. He said he could definitley see a difference from the first few days, and feels that I'll make a very good recovery - although he said I may have a slightly asymetrical smile (I'll take it!).
I am scheudled for my first post-surgery MRI on Sept 9 - I'll have it done at NYU and then see Dr. G right after, so no waiting - yay!
Tomorrow I see Dr. Louie regarding the infection. Please keep fingers and toes crossed. I really want this little chapter to be in my rear-view mirror. And, I'd really like to get off the antibiotics because they are making me really, really tired. Mostly, though, I'd like to stop being an ickyhead now...
Debbi - waiting to get the verdict from Dr. Louie...
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Congrats on the great prognosis for your facial recovery, Debbi! that's really wonderful news...
Everything crossable here is crossed (fingers, toes, eyes), hoping that after tomorrow your ickyhead days will all be behind you. Good luck!
Carrie
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Hi Debbi -
I like your idea about an AN starter kit. I t sounds like you, Jan and Lori might have a winner there. Too bad about the sushi though. I'm not a fan but you obviously miss it. Maybe you can get take-out! Glad to hear that your doc was happy with your progress and feels that your facial nerve function is returning. I wouldn't worry too much about an asymmetrical smile, I'm sure it will just add a charming character to your face. Probably no one but those who know you best will even notice it. Good luck tomorrow with Dr. Louie. I'm crossing everything that will cross for you, fingerrs, toes, shoelaces! Great news about your MRI in September too. I find one of the things that stresses me out the most, and this is probably true of everyone, is waiting to find out what the results of tests are. The fact that you'll find out that day is great news!!
Jan -Thanks for yoru reply. I was pretty sure you and Lori were half joking and half serious but had to ask. Humor is the best way, in my opinion, to deal with something like thiis. You have to be serious enough of the time, and I couldn't agree more with Kay that you can laugh or crumble in a pile and cry. I've done my share of crying over this thing, and I'm sure I'll do more, but I'd much rather look for the humorus side of things. It just makes everything seem a lot better than it would otherwise. Regardijg balance issues, I'm hoping not to have too many, especially since my doctor said he expects me to have about 60% less of a problem than he originally did. Not too shabby! Today was a busy day as my niece came over with her little boy. He's htree years old and just adorable. They stayed until about 4:00 so my daughters got to play with him when they got home from school.
Kay - Thanks for the advice about laughing at myself. It is one of my favorite things to do lately. Good thing my audience (me) thinks I'm funny! It makes me feel a lot better than crying would, although sometimes a good cry seems appropriate too. This is a scary experience, but you are right about a great support group. The people here are just great!
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Debbi,
Every time I see Dr Louie in your postings I think you are talking about my husband LOL!! That's his nickname and that's part of our email address.
By the way, I so glad you are getting better.
Anne Marie
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Hi Ho, Hi Ho, it's off to Dr. Louie I go (not your Dr. Louie, Anne Marie!)
My appt is @ 2:30 this afternoon and I am filled with anxiety and excitement. I am SO hoping to see an end to the IVs - not that they are difficult, but because ther represent a barrier to my recovery -- not to mention that the antibiotics are making me wickedly tired. Having a port hanging out of my arm is a constant reminder that I am not "well" yet - I'm sure you all understand what I mean by this? Intellectually, I know I am doing very well, but seeing that damned (sorry Moderators - there just isn't a better word!) port sitting there like a malevolent little troll is just crummy.
Meanwhile, thanks to Wendy, Jan and everyone else for the good humor - you all rock!
Okay, enough of my whining. Based on the great big scab on my head, and the fact that there has been NO drainage for the last two days, I am nothing but optimistic. I will update tonight when I get home.
Meanwhile, has anyone heard anything from Fabian???? How's our girl doing????
Debbi
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Debbi~
I can certainly empathize about the PICC & the antibiotics! Good Luck today at your appointment!
K
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Hey Debbi--hope that your doc un-PICCs you today! Just tell him you need to go to the beach and it don't match your bikini!!!
Hugs,
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/happy_face_mummy_goofing_around_md_.gif)
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Hi Debbi-
Good luck today! I hope Dr. Louie has nothing but good news for you. I'm sure getting rid of the PICC will be like getting rid of a ball and chain, so I hope you get to doss it over the side, metaphorically speaking. I'm sure getting off the antibiotics will be something to celebrate too. All fingers, toes and shoelaces are still crossed for you (I never could cross my eyes). I'll check back later to see how things went. As I told Jan a few minutes ago, I miixed up my doctor appointments on the calendar. I through I had an appointment with the opthamologist today (I have high pressure in my eyes so I have to be screened every few months and make sure I don't have glacoma (spelling?). A little voice in my head made me call the doctors' offices today to make sure whiich appointment was today and it turned out it was the audiogram, which I had this morning. Now I'm waiting to hear from Dr. Choe and see what he has to say. The audiogram showed even more of a decrease in hearing than the one two weeks ago, so the news was not good. I thought this might happen, so at least I wasn't surprised. Hopefully, I will get good news from the opthamologist tomorrow. I'm pretty sure everything is the same as far as that goes. I'm just falling apart (not really). I have to say that I am grateful to be off that darn prednisone. It really made me feel like I was losing my mind.
Wendy
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Debbi:
Just popping in to add my wishes for some positive news from 'Doctor Louie'. I fully understand the frustration of having anything - even something as necessary as the PICC line - that reminds you you're not totally well. I'm pretty sure you'll be free of it by the time you read this, so you'll be able to resume your full-speed-ahead quest toward a full and complete recovery. :)
Jim
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Debbi -
am anxious to hear what Dr. Louie said. Are you PiCC-less yet?
Jan
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Hi All-
Well, we got stuck in NY rush hour traffic leaving the city , so only got home a short while ago (stopping to grab a veggie pizza to bring home - can't eat THAT in public!)
So, Dr. L said that because some of my blood levels are elevated, and because I was still having a small amount of drainage up until a few days ago ... I have to stay on the antibiotics at least another 10 days. Rats. Double rats. However, he reminded me that if I stop too early and the infection comes back, the only option will be surgery and a 3rd hospitalization. Okay, I want to avoid THAT at all costs, so the PICC line stays in for now. I'm a bit disappointed, but nothing to do but stay the course. Guess the plastic wrap and packing tape stay next to the shower for a bit longer.
Question for the PICC folks - did anyone come up with a better way to keep the line totally dry during showers? I feel like a freakish version of the "mummy" when I shower...
I requested a different HHC nurse because the one who has been coming has unnerved me a bit. She always seems uncertain. She got something stuck in my IV line the last time she drew blood; and the dressing she put on my picc site was done wrong (Dr. Louie was very displeased when he saw it.) So, I sucked it up, and told the company that I wasn't pleased with the nurse. Someone is coming over tomorow morning at 7:30 AM to draw blood and change the dressing - let's hope for a good one!
Tomorrow is another day - my big adventrue tomorrow is the facial therapist. I'll post late morning with an update. In the meantime, I remain...
Debbi - still PICCed ion NJ... :D
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Debbi -
sorry to hear you're still PICCed, but what Dr. Louie is suggesting makes perfect sense to me. Ten days of drugs instead of a third hospitalization is a no brainer. On the bright side, you are definitely moving in the right direction and the ten days should go quickly. Hang tough ;)
I can't even imagine the mummy shower preparations - I'm thinking Lori should come up with an easier remedy - afterall she's our key to financial happiness and great wealth :D I thought it was awkward to hold a plastic cup over my BAHA site for a week and I lived in fear of water creeping under the edge of the cup. I can laugh about it now, but at the time it wasn't very amusing. Hopefully one day soon you can laugh over the mummy wrap :D
IMO the decision to switch nurses is a great one. I love nurses - I work with some - but it sounds like this one is brutal. I know from being a blood donor that not everyone is good with a needle :P
Best of luck with the facial therapist; let us know how the adventure goes.
Jan
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Unfortunately, I think the mummy shower wrap is probably the best you're going to do. When I had my BAHA surgery, they gave me some waterproof things - they looked like heavy duty saran wrap with sticky stuff around the edges. We used to call the smaller versions of it Tegaderm, which we used in the hospital to cover over IV's that weren't being used at the moment - kept them dry and in tact. I don't know what the brand name is for the bigger ones, but mention it to the home health nurse and they may have something you can use. Or you can even ask at your pharmacy.
I've usually resorted to being MacGyver to keep things dry - plastic wrap, zip lock bags, whatever I could find.
Good luck with the therapist. I'm still working on our get rich quick plan....
Lori
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Hi Debbi -
I've been wondering where you were. Sorry you're still PICC'd, but as you and everyone else has said better this than yet a third stay in the hospital. I hope the next ten days fly by for you and your new nurse is better at what she does. Nurses do rock. One of my neighbors is a nurse and she ihas been a real angel and a good friend to me when I've needed her. Of coruse, one hand washes the other too. Good luck tomorrow too. Had my hearing test today, but I'll fill you in on that another time. Hang lin there and keep on smiling. Your positive attitide and humor will see you through this too.
Wendy
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Debbi~
One of my nurses suggested using the wrap stuff that is kind of plasticy-foamy that stretches and adheres to itself (it comes in all colors and they wrap you arm with it when they draw blood and then the wider is flesh-tan color) to wrap up the danglly thingies during the day and then also to use under wrap in shower - then you don't have to be SOO careful withthe wrap. Also. the HHC nursed I used always came in w/ a little trash bag to use each time -- she figured that those little bags all folded (or from roll) were just exactly the right sizr to cover so then I just taped that! They suggested an old bread sack or newspaper wrapper but I thought the other worked better.
Good move with the nurse -- thank goodness mine were all great!
Hope some of that makes sense...
K
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Hi Debbi,
I am sorry you have to keep the PICC. I do agree it is better than a hospital stay. Like you said, RATS! I am cheering you on and hope the time flies and your next blood test is so good he frames the results!
Take care,
Mary 8)
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Ah, another day in paradise...
The HHC nurse was supposed to be here by 7:30 this morning, so that the blood draw could be complete before I infused the antiobiotics. At 7:15 sthe owner of the HHC company called to say that she'd just left and would here in an an hour!! A really irritating conversation ensued wherein the woman told me how inconvenient it was to be here this early, and how early she had to get up, etc, etc. I was almost speechless! I suggested to her that her problem shouldn't become my problem. Long story short - the IV company has now fired the HHC company, a new company is coming tomorrow to do the blood draaw and dressing change (now 3 days past due...) I am sure this next company will be good.
So, after the early morning excitement, I got in my car and drove about 30 minutes to the Kessler Institute to have my first facial therapy session - which went great! I have a whole bunch of new and very specific things to do now to start getting the nerve "awake." I'll go back next week for some additoinal eye exercises and a progress check-in.
At least now I have something I can be in contol of, which feels great. I already did one round of exercises and will do another tonight while my IV is infusing.
And, now, i am going to lay down and take a much-deserved nap.
More later...
Debbi - still PICCed in NJ...
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Debbi -
in addition to being PICCed, it sounds like you were also pissed off - with good reason! Sorry you had to endure that incident.
Glad the facial therapy session went well and I'll keep my fingers crossed for that nerve to "awaken".
Good night :)
Jan
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OH MY GOSH! That is unreal...I would have been furious! I am soooo SAD :( you had to endure it, but it does sound like IV company took it seriously. I hope you are getting some rest and dreaming of a nice island paradise!
Mary
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Hi Debbi -
Good for you. No one should be treated that way. It's not like she was doing you a favor, it's her job (or was her job). Glad to hear things went well with your facial physical therapy. I know what you mean about being in charge of something making you feel better. This experience makes you feel so out of control, having any contorl over anything is a plus. Hope you enjoy your nap.
Best wishes
Wendy
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Wow, sounds like there's one HHC nurse out there that ought to consider a different line of work... (Glad the IV company worked with you to rectify the situation, at least).
I'm sorry to hear things are dragging on with the antibiotics/PICC line, though as Dr Louie pointed out it's your best course of action. Re how to shower with the PICC line in: Can you use Tegaderm to seal it off? My mother had a pleural catheter in her lung for a few months earlier this year, and had to protect the place where the tube came out from infection, which could have happened with immersion (so no baths or swimming), but after the initial incision had healed (which I'm guessing yours has by now?), she was allowed to shower with a dressing and Tegaderm patch to keep everything dry. I don't think she found showering that way too inconvenient.
Very exciting report about the facial therapy--hope your nerve recovery moves along at a brisk pace, and provides a healthy and positive contrast to this horrible infection you've had to cope with!
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Debbi,
This is fantastic news that your face is better! I hope you turned a corner with your face and it will be back to normal really soon!
Sorry about your PICC line but it sure beats being in a hospital. I would give anything to be back at home with having any kinds of lines attached to me 20 years ago when I was at NYU for 30+ days and was visited by Dr. Louie as well as entourage of interns,residents, fellows, other doctors, etc,etc. Remember that? As my roommates I had ladies who were prepared for spinal surgery and were given enema, pituitary patients who became incoherent and incontinent after surgery, etc. This is not the way to meet people. You actually have a very nice roommate and even a luxury to fire your nurse. You can't do it in a hospital. I understand PICC line is a nuisance but it actually saves you from the hospital where you eventually acquire PSTD. Hang in there! At least PICC is temporary and hopefully you wouldn't need it after another 10 days.
Eve
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Hi All-
Just hooked up to the PICC line, so figured I'd do a few posts while I'm hangin' out. As always, I really do appreciate the words of encouragement and support. SO many times I wonder how people can possibly go through all of this without this kind of support. As much as friends and family try to understand what it all feels like, they can only imagine - whereas YOU actually know! So, again, thank you to everyone on this forum!
Eve, I can't even imagine spending 30 days in the hospital! Yes, I can just picture the endless parade of doctors, interns, residents, fellows, roommates, and sightseers. And, yes, the PICC line is definitely the better option! I guess I had to whine for a little while, but I'm reconciled now!
I am really glad to be getting a new nurse. I actually had to remind the last one to wash her hands twice! Can you imagine? Eek.
Question for people who've done facial therapy? (And I may post this elsewhere, too) Has anyone used something called a Z-vibe? The therapist recommended it, so I ordered one today. I think it is actually for small children, but apparently useful in stimulating the nerve. Hope, if you're reading - have you had anything like this?
Well, off to read about everyone else now...
Debbi - still PICCed off...
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Hi Debbi-
Just checking in to see how you're feeling today. It looks like the suns come back out, thank goodness. I visited Jan's picture posting last night and reread her description of her first day with her BAHA and sure enough it did the trick. I got in a good laugh before bed, slept like a baby after that. I also got a call from a friend from the Cyberknife support group. Do you know Ceeceek? She and I met over there, but I stopped posting there once I decided to have surgery. Once that decision was made, I felt like I didn't belong there anymore. I really enjoyed talking to some of the people there though and Ceecee was one of them. Drs. Medbery and Spunberg are really great too. I knd of miss them sometimes, they give great advice to everyone there. Anywya, I'm going off on a tangent. Since it's unusual for you not to have posted here by now, I hope everything is okay. I'll check back later. Maybe you're just taking one of your power naps.
Wendy
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Gooooooooo Debbi!
:)
Mary
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Aaahhh - the new nurse (who's name is also Debbie, but with an "e") is terrific!! What a night and day difference from the last one. I really should have said something right away about "Lea" - now I realize how really incompetent she actually was. Anyway, all of my blood work is waiting for FedEx pickup, and my dressing is freshly changed and looks like it is supposed to look. Wahoo! And, Debbie is set up to come next Weds so that next week's blood draw is on time.
Still getting some blood around the picc incision - Kay and Cheryl, if you're reading this, did you get a little ongoing bleeding at the site?
When I changed the dressing on my head this morning, I noticed a small amount of drainage again- which means that Dr. Louie's decisoin to keep my on the antibiotics was excellent.
Wendy, could you send the sun out here to northwestern NJ? It is still gloomy here and I could use a little sunshine!
Jan, what cool sounds are you hearing today? I better go check your posts to see what is new in BAHA land...
Debbi - freshly swabbed and ready for the world...
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:) Yea!!!! That sounds more like it. I am glad Debbie is good.
Mary
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Hi Debbi,
I wish I could send you some sunshine. I'm sure you'll see plenty this weekend though, it sounds like we're in for a typical, hot summer weekend. Glad to hear the new nurse is so efficient. Does it feel funny when you call her by name? I onlly know one other Wendy and she is only the third Wendy I've met in my llife. It feels weird to call her by name. Well here I am getting off the track. Sorry to hear you still have some drainage, I guess that means your infection is still rearing its ugly head. Hope the antibiotics know it dead sooner than later. I forgot, how many more days do you have to go on them? You sound like you're feeling better, so I hope you are.
Best wishes,
Wendy
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Hi Debbi,
I hope you are un-picced soon. I have been following your saga and thought I'd try to send a link. I know it's too late for you, but maybe it will help someone else. Your experience has prompted me to ask about presurgical antibiotic prophylaxis at my preop appointment on Tuesday. Do you know if you had this regimen when you had your surgery?
http://drugtopics.modernmedicine.com/drugtopics/article/articleDetail.jsp?id=151434 (http://drugtopics.modernmedicine.com/drugtopics/article/articleDetail.jsp?id=151434)
Best wishes,
Tamara
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Hi Debbi,
You really have had a long run of this. You're in my prayers.
Mona
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Hi Debbi -
I'm on early today because I'll be out most of the day. Just wanted to check in and say hi and that I hope today is even better than yesterday. Scratcjed a mosquito bite and now my hand is swollen so I'm off to the doctor to see if I need antibiotics. Then hopefully we're going to the pool.
Chat laterand have a good day.
Wendy
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Good morning all-
Yep, its going to be a hot, sticky day in New Jersy. I was hoping to do a little gardening, but I think I'll wait - no sense getting all sweaty, especially when I have to plastic wrap myself before showering! ;D
Tamara, that's a very interesting link! I don't know if NYU did give any antibiotics at time of surgery - this would definitely be something I'd ask in the future. Hopefully some of the folks who are waiting surgery will see this and ask. As big of an issue as infections are now, I would think that hospitals would do a better job on this.
The docs never really got a good culture on my infection, so unable to say how it started - but what has been mentioned several times is hair follicles. Isn't that weird?
Wendy - stop scratching!!
Jan, how's the BAHA today?
Lori, any new business ventures for Wendy to invest in? ;)
Mary, how're YOU doing?
Kay, stilll flashing that gorgeous smile of yours?
Ah, well, off to the opthamologist to see if there's anything else I can do for my non-tearing eye. Problaby nothing, but figured I should really add one more doctor to the list... ::) :P
Debbi - trying to make my face move...
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Debbi -
It's good to use that economic stimulus check on various doctors, isn't it? Besides, the eye doctor is probably ready for a tune up on his Ferrari anyway. Nice of you to finance that for him! :D
It's HOT and sticky here in Nashville today too. I think I'll be spending the day in my kid's little plastic pool. It won't be pretty but, hey, desperate times call for desperate measures. It'll give me an opportunity to come up with some more money-making schemes.. maybe it would be a good idea to come up with one that actually makes money for a change...
Can any of you Canadians send down some cooler air for us?
Lori
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Lori~
It is supposed to be 96 and gusts up 45 mph!!
K
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Debbi -
Back from the doctor. He actually had the nerve to laugh at me and told me it was just an allergic reaction and to take some Benedryl and use hydracortisone cream I already knew I'm allergic to bee stings so now I can add mosquitos to the list. The fun never ends! My hand is about 1 1/2 its usual size, red and tichy. That's why I thoughtit might be an infection. Thank goodness its not. Have fun gardening and drink lots of water if you're staying outside. Now that I know I'm okay, we're going to the pool. See you later. Hope you have a great day!
Wendy
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Lori,
In the Southern Ont today temperatures reached a high of 34 Celsius, with a humidex of 42. That's dam hot!! My central air has been on since yesterday at lunch. You would have to go into the Territories to avoid these hot, hazy and humid temperatures. No igloos around here. ;)
Anne Marie
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Debbi -
What did the optahmologist say? Did he have any ideas for you? Let me know how the fcial PT is going too. I' hoping you'll be flashing that barely noticable assymetrical smile soon.
Wendy
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Haven't worn my BAHA today as it's hot and sticky here too. When I was outside I was doing yard work and I figured I was too sweaty to wear it; when I was inside there really wasn't much I needed more than one ear to hear ;D
The humidity is horrible and we have been having thunderstorms for about the third day in a row and there is no relief in sight until the middle of next week. IMO it's just too hot for early June. I hate having to turn the A/C on so early - though I'm confident that the electric company is just thrilled ;)
I wish I had a great excuse to sit in a plastic kiddie pool - Lori can you spare your kids for a while?
Debbi -
your doctor has a Ferrari :o Boy, doctors with fancy cars, doctors with private islands! I'm beginning to see where I went wrong in life LOL
Jan
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HI All-
Sounds like we are all in sticky, hot hell this weekend. It's too hot to do anythign outside - I don't want the area around my picc line to get all sweaty - I'm sure that's NOT sanitary!
I didn't much like the opthamologist yesterday - thoguht he was arrogant and he didn't listen to what I was saying. However, he did say that I am doing the right things with the various drops and gels, and that my cornea is fine. No need to see him again unless I have problems - or if this doesn't eventually resolve in which case I'll want to investigate gold weight.
I ventured into a Model's after the doctor, and for some reason it ended up being one of those experiences that made me feel very insecure. I think it was probably the noise, and the fact that I didn't know my way around the store. When a sales person aslked if he could help me, I couldn't hear him - and then when I was standing in line to pay, I didn't hear the cashier call "next". Ugh - this is the part of SSD that isn't much fun. I almost raced out to my car and just sat there for about 5 mnutes collecting my emotions.
I spent the rest of the day "hiding" in the house. I guess I was due for a bad, "feel sorry for yourself" day ... Today, however, is a new day. I am finishing my morning IV and then plan to tackle the task of showering (after first wrapping myself in plastic wrap, eye patch, etc) then off to the grocery store to pick up a couple of things for dinner. No pouting allowed today.
Debbi - trying not to sweat on my PICC line
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Hi Debbi
I guess we all have a day here and there where we can feel sorry for ourselves for a little while. It sounds like yesterday was one of yours and you had every right to feel at least as sorry for yourselft as you did. I can't imagine going what you have and not giving in to the blues some of the time. You're a strong person, but you're only human. That opthamologist sounds like someone should put him in his place. I hate arrogant doctors. My ENT was and is kind of arrogant. Do you remember when I told you I can leave things that bother me alone. I tried talking to this guy like a normal person when I was seeing him. Although he was professional and is good at what he does, I did not like the way he talked down to me or the look he would occasionally give me if I disagreed with him. Well, I sent him a letter the other day and you know first hand what kind of letters I can send. This time I was not half crazed and on prednisone. I meant what I said. I basically told him what a good doctor I thought he was and that while I very much appreciated how quickly he diagnosed my problem, he needs to work on his people skills. I wish I could have been a fly on the wall when he read it. My internist already knows that I sent the letter (he actually thought it was funny) because I gave him a heads up since he and the ENT are friends. He knows how arrogant this guy can be. Maybe you should do that, I know it made me feel better! Hope today brings happier things.
Wendy
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I guess it's hot and sticky everywhere these days.... ugh..looks like another day in the kids pool. I will, however, be generous enough to ship them and the pool to Jan and just remain in a quiet, air conditioned house while Jan is trying to squeeze 4 kids and herself into the water. It does have a little slide and a cup holder, so you can put down your margarita while sliding - they think of everything.
Debbi - sorry to hear the eye doctor thing wasn't as pleasant as you would have hoped. Some of the best doctors have the worst people skills. They should have to pass "Bedside Manner 101" in school before they can graduate. On the bright side, at least your eye is in good shape and hopefully will stay that way.
Stay cool everyone!!
Lori
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I don't know where to start - guess since this is Debbi's topic I'll pick her first - yes, "mom" is playing favorites again ;)
Debbi -
I am sorry to hear about the arrogant doctor. Amazingly enough, I don't have any arrogant doctors who come to mind. I thought my neurosurgeon would be extremely arrogant because he is a "big shot" and has a huge reputation, but I couldn't have picked a more down to earth, reassuring man. He is definitely confident, but not at all cocky like I expected. My neurotologist is a nice guy too and he knows his stuff, but I find he can be very business like and serious - which, while being very commendable for a doctor - sometimes hits me the wrong way. I have to give him tremendous credit though; he has recognized that I like humor and he makes it a point to include some in his communications with me.
I am thrilled to hear that despite the fact your doc was arrogant, and a non-listener, your eye is doing well. I'm hoping you won't have to go the eye weight route, but if you do, I know you'll keep the same positive attitude you usually have and things will be fine. Don't feel bad about your "bad" day. IMO we all have our grumpy days and we are all entitled to them. The weather isn't helping either - I know it's giving me a bad attitude >:(
Wendy -
the letter to the doctor. Sounds like something I would do. There's a large part of me that wants to change my bad experiences into positive ones for others.
I once wrote a doctor a letter and asked for my money back - and got it. I had made an appointment with him for a second opinion - or maybe it was a third - and had taken the time to forward a copy of my medical records; and trust me, it was a very large file. When I got to the appointment, I found out he had never even looked at my records and our appointment was basically him asking me what I thought I should do ::) I told the doctor who had given me the first opinion about my letter and my refund and he got a huge chuckle out of it :D I'm anxious to see if your ENT mentions the letter to your internist. Keep us posted.
I also have to add here, that I although I am quick to rock the boat when I feel it needs rocking - I am also quick to offer praise and thank yous. I wrote thank you letters to all my divorce attorneys and also to all the doctors involved in my AN surgery - and I mean personal thank you notes (not the Hallmark ones). Yes, these people all got paid, and they were just doing their jobs - but IMO they did their jobs wonderfully and it was the least I could do to thank them all.
Lori -
I was unaware you had the "deluxe" model kiddie pool and I am SO excited that it has not only a slide, but a cup holder. I will trade you my air-conditioned house anytime - as long as you agree to pay ComEd for that high-priced service. PM me your address - I'll be right over ;D
Jan
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The only Dr. that I had that was truly a jerk was the Infectious Disease doctor recently. One day I reminded Dave that I had an appointmentand asked him if he was meeting me there and his reply was..."Of course, I haven't had my daily dose of arrogance!"
K
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"Daily dose of arrogance" - that's funny!
Thanks for all the kind words from all of you - I think I was just in a bit of a funk yesterday. I am still trying to get comfortable going out by myself, and it is going slower than I like. I know you'll all understand what I mean here - I feel SO insecure when I'm in a store by myself right now! It takes me a bit by surprise, becasue I've always been so independent and confident. I know I'm just getting used to the "new" me, so I know this will get better with time, but ... damn, I hate feeling like such a weeny!!
So, this week, i am gong to push myself to do something uncomfortable every day - it's the only way that it is going to get any easier. So, if you see someone sitting in the parking lot sobbing, that'll be me ... kidding ... sort of... :P
Hey, Wendy, good for you writing to the doctor!
Oh, BTW, I just posted a current picture of my face (okay, that sounds weird!) to my blog if anyone wants to see progress...
Off to slay the demons...
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Debbi,
I just saw your photo and you look SO MUCH BETTER! CONGRATULATIONS! :D Recovery from AN surgery is long for many people (including, unfortunately, me) so, please, don't lose your wonderful feisty spirit. Human bodies have the tendency to heal themselves. Right now you are probably at your lowest point with being hooked to PICC, feeling tired from antibiotics and not knowing yet what changes, if any, SSD brings. Things will get better, you just have to go through this yucky time.
I have to commend you for documenting your progress, your life after surgery and posting pictures of your face. I am sure you helped more than one newbie who is wondering what it is like.
Eve
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Debbi -
your "current face" looks lovely and I see a definite improvement from some of the other pictures you posted post op.
We all have our funks. Just got over one myself the other day ;)
Some tasks are a little overwhelming post op when dealing with SSD. You will get used to them with time. Even though I have a BAHA now, I still experience hearing issues - the BAHA helps a lot, but it's not like being able to hear completely again. I think your plan to push yourself and do something uncomfortable each day is a good one - just don't overdo it. Take you time and good luck.
K -
very amusing comment by Dave! He sounds like a regular member of our AN family ;)
Jan
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Debbi -
You look fantastic! If this is how you look when you're face is drooping, you must look very close to your old self when you're not tired. I see definite leaps ofimprovement from previous pictures. Good for you for pushing yourself. Doing something uncomortable every day sounds like the fast track back to normalcy (whatever that is). Just don't forget not to push yourself too hard. You deserve a break every now and then.
Jan - Even though I told my ENT off, I did it politely. I agree with the need to thank those who deserve thanking. I sent a note to my internist and most of the doctors I saw for an opinion. I know this wasn't necessary, but not knowing who I would end up with, it seemed like a good way for them to remember me in a positive way if I went back to them for treatment.
Wendy
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Wendy -
I'm glad you were polite. I find that being polite when I tell someone off helps me keep my composure. Plus it's easier to get my point across when I'm not so angry. And in addition, I come across much more rational that way :)
Not that I go around constantly telling people off, but sometimes the situation warrants it. In fact, rather than referring to it as "telling someone off", I guess it would be more accurate to call it constructive criticism.
Jan
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Thanks, Jan, Wendy, Eve and Kay - I confess to feeling pretty vulnerable putting that picture up! I miss my smile so much and it is wierd to see a picture of myself without a smile. However, it is good to get positive feedback and I thank you all. Must keep reminding myself that progress is measured in milimeters, or maybe micro-milimeters!
Debbi
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Debbi -
IMO, posting pictures is something that makes all of us feel a little vulnerable. Afterall, not everyone I know gets to see what's under my hair ;)
But, by the same token, I think it's extremely important to post them.
Thank again for posting yours,
Jan
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debbi--
Wow, you look FABULOUS! Just lovely, and so close to "normal" (in spite of everything you've been through lately...) that someone who didn't know the history couldn't even begin to suspect it... I hope the tremendous progress you've made on this front offsets some of the less pleasant stuff you've been having to endure lately...
About arrogant opthalmologists: I think there may be a special degree they offer in that! When I realized I needed help and my first, do-nothing eye doctor wasn't going to provide it, I booked a consult with a "big name" at OSU hospital (we were living in Ohio at the time). I explained that my eye was constantly dry and irritated, that I'd had frequent bouts of keratitis and a corneal abrasion, and told him how I'd been caring for it (ointment 24/7 at that point, sunglasses and/or eyepatch outdoors, etc). His glib response was "Well, we could always extend that tarsorraphy and sew it shut if you want" (implying I should just get used to it, I guess?)
Needless to say, I kept looking...
Carrie
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Carrie,
All I can say is Wow! How unfeeling and unpleasant. Now there is a doctor I would have sent a letter to and not been polite at all. What a jerk!!! I hope you found someone you liked a lot better and who actually cared about what you were going through.
Debbi -
I have to say that I find your openness in your blog and the pictures you post are both incredibly brave acts. I can't even figure out how to post a picture, let alone deciding if I'll be brave enough to follow in your shoes (just how big are your feet anyway, probably smaller than mine -- 91/2 -10). I hope you realize how much people(especially me) appreciate your selflessness.
Wendy
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Wendy,
I were 9 1/2 - 10 so if you follow in m y footsteps, the shoes will fit! :D :D :D :D
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Wendy/all:
I just wanted to pop in and comment that I haven't had to deal with any arrogant doctors - because I simply won't tolerate them. If a doctor treats me dismissively or acts if he has something more important to do when I'm talking to him, I never go back. My wife, who has to see a lot of doctors, is even more adamant than I am about not tolerating rude or condescending attitudes from doctors. We've had the same Primary Care Physician for well over 20 years. He's a great guy and always very helpful. He's the doctor that originally sent me for the MRI when I presented with my symptoms. He called me that night with the news: "Well Jim, you have an Acoustic Neuroma" I replied, trying to sound intelligent: "what is an Acoustic Neuroma, anyway?" I found out. He also informed that I would need surgery because it was too large for radiation. That was a tough call - for both of us.
The first neurosurgeon I consulted (on my primary care physician's recommendation) was unnecessarily aloof, seemed disinterested in my case and worse yet, was evasive when I pressed him to tell me how many AN surgeries he had performed. He finally said that he had done 'about 60'. See Ya! Fortunately, my wife's neurosurgeon (he didn't do skull surgery, he's a spinal guy) recommended the doctor (in his practice) that I ended up selecting. This surgeon is first-rank but humble, unwaveringly polite and is truly caring and compassionate. I'm one of his 'star' AN patients (he claims) and he always acts delighted to see me. The feeling is mutual.
Jan:
I loved it when you posted about getting your money back! My wife loved that one, too. It's something she would do.:)
Debbi:
If that is really your 'droopy' look, you probably won't need too long to have your facial symmetry restored. Thanks for posting that photo. I know it is a challenge for you and that you feel vulnerable but it should help your confidence level to know that you're accepted even if you're not 'perfect' (who is?) Bravo to you!
Jim
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Debbi,
I think you look beautiful. Just think about all that you have been through these past few weeks. I can look worst than you when I'm tired and I haven't had my nerve graft yet. Remember I have a facial neuroma that was debulked almost 2yrs ago. For me mornings, evenings, killer headaches and a low weather pressure causes the left side of my face some grief :(
You go girl, keep up the good fight! Your story, is amazing. Please continue to post your recovery, it gives many of us hope.
Anne Marie
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First of all, can I just say THANK YOU so much! Every time I look at my face in the mirror, all I see is the wild eye and the down-tilting mouth. Realistically, I do know that my face has improved from those first early days, but the progress is painfully slow to an impatient, instant gratification kind of gal like me. Yep, I know a bunch of you can relate to THAT!
So, hearing from all of you that I look okay is really wonderful. I often wonder, when I venture out, what people think when they see my face - Willie keeps telling me that most people who don't know me wouldn't necessarily spot that anything is wrong. Of course, he's my husband and he loves me, so he may be biased!
The down side of forcing myself to get out more, and to push outside of my comfort zones means that there are moe times when I feel extremely vulnerable and insecure in my environment. It's a strange feeling for me, and I take huge comfort from knowing that you guys all know what this is like. So, thank you SO much!
Now, a confession to make - today I didn't do anything other than a few hours of work (safely on my phone in my office). Other than taking the dog out for a couple of quick piddle breaks, I didn't venture out at all. So, tomorrow I am going to make up for it. I am having lunch with a professional colleague of mine whom I haven't seen since pre-surgery AND I am going to the bank and the grocery store. You guys have all given me much encouragement today - I shall go forth and conquer!!!
On the subject of arrogant doctors - I'm with you, Jim! I've fired more doctors than I can count - basically, if they won't take time to answer my questions in a thoughtful, non-condescending way, they're ... out! I was more tolerant when I was younger, but now, I insist on better care for myself and my family. Kind of funny - my Italian family on my husband's side was of the school of thought that you never question your doctors - when I married into the family 8 years ago, their world started to tilt on its axis. I've successfully gotten several doctors fired!! Including one who was so patronizing to my mother in law that I nearly slapped him myself! Some doctors shouldn't take on geriatric patients - period.
Okay, enough of my rant - guess this doctor thing hit a nerve. all that being said, I love my doctors now!
Okay, on to the nightly infustion - my lemon IV awaits me...
Debbi
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Debbi -
You really do look great. Trust me - I look much worse than that - and I go out in public.
I do remember when I was first adjusting to my new look, I hated to go anywhere because I was so self-conscious, but I finally realized that my family doesn't care what I look like and doesn't even notice the changes anymore, my friends don't care and most people I'd want to have any interaction with don't care. I do get some funny looks and stares every now and then, but I've noticed that there are a lot more nice people out there who would rather have a nice conversation than just stare at me.
You do look great and I'm sure other people would not notice anything different if you didn't tell them. Thanks for posting the pictures - as you can see, I haven't been brave enough to post a post-op picture of myself yet....
Lori
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Debbi~
Good Luck tomorrow - go get 'em Tiger! You'll do great! By golly, you conquered brain surgery...you have a right to look funny & have something to show for what you have overcome (even if that is really NOT what you want...)!! Trust me when I say you look great -- I have looked a LOT worse for 12 years and I have been EVERYWHERE...well, not everywhere, but anywhere I wanted to go (& some of those places were with my in-laws -- pretty smancy!!). Good luck! ;)
K
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Debbi -
Glad you are feeling better about everything. Good luck tomorrow. You are the best!
Wendy
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Just a suggestion - if anyone stares, try to smile at them and think the best thoughts possible. By that, I mean, think to yourself, "Maybe that person has a friend who has an AN, and is wondering if I did.." or something like that. I know I've mentioned that my daughter is severely disabled. We are out in public constantly, and on the (actually rare) occasion that someone stares, I just think similar thoughts. I'm actually guilty myself of staring when I see a child that resembles my daughter, so I've been on both sides. If a child stares, I will sometimes ask, "Are you wondering about my daughter?", and then give them a brief explanation: "Her brain doesn't work right, and she can't talk, but she'll like it if you talk to her". For the AN stares, especially from children, I'd try to educate. Otherwise, just smile, and happy thoughts.
Smiling with happy thoughts,
Tamara
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Tamara~
Great points - some I wish I would've remembered (but I was so tired when I responded!). I do the same thing - in both instances! I have stared before when I was just wondering what was wrong (this was a few months after surgery) and my hubby really got on to me. He said that of all people I should not stare b/c I know how it feels - I answered right back that of all people, I had a right to stare b/c I had been stared at so much (I think this was while my eye was sewn shut or right after)!!!! No, I really did need that reminder but I was curious! I taught 1st grade when I had my surgery and then 3rd a couple of years after that - I always told my parents at Open House (my 1 time all year to REALLY get to talk to them) that they might not agree with me, but I had told their children that it was OK to ask someone what happened when they want to stare. I told them that 99% of the people are like me and don't mind telling them and the other 1% would probably say that they would rather not talk about it (& that is OK too). My students (& my girlies) talked very open & at length about my whole surgery experience. I hope that they came away from my class with a LOT more than just reading and writing - I nearly KNOW they did!! :D I taught them theat it doesn't matter what you look like on the outside, it is what is on the inside that matters and even if you look "different," you can still do what others can do (even if you have to make little adjustments sometimes)I always try to educate people where ever I am if they look curious - my explanation is defferent depending on the age of the person I am talking to.
Have a great day!
K
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I think there are some people who think we have bells palsy. I had more than one patient ask me that. I would sometimes give a brief description of what I had due to the hearing problem. You could tell people wanted to ask but were trying to be nice and not. One guy did it by asking how long I had had a problem. Many patients were glad to hear about my health problem as I really could understand what it was like to have a health problem esp if they were ones we got in the hospital every so often. This was a small rural hospital and not a big city one.
Cheryl R
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I definitely got questions about BP when I was pregnant - I guess a lot of women get that when they are preggers!
K
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Do a lot of pregnant women get BP?? (Pardon my ignorance, but all if have is pets...)
And, Cheryl, is what we have different than bells palsy? I have kind of been assuming that it is the same thing, but wondering now?
When I was in the Recovery Room (where I spent the first 26 hours!) the nurse who watched over me the first night (her name is Megan, and I think she's a saint) shared with me that she had gotten an ear infection some time earlier and had bells palsy for about a month. She was so kind and empathetic and I will forever be grateful to her for sharing her story with me at that time. I looked at her and all I could see was a beautiful young woman - which made me feel extremely hopeful. Some people are probably just born to be nurses - and she is definitely one of them. Which reminds me that I need to send a letter to NYU about her...
Debbi - not preggers, but have that BP look...
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A Bells palsy person would have just the facial droop which is what to look at us would show. We have all the other effects that the tumor has also caused but is not apparent unless one is around for more time to see our wonderful drunken sailor walk,the lack of hearing and our frequent use of the word What!, our sometimes need of a bib and a straw and all the other fun things we have to put up with! Bells palsy is something that most people are familiar with so they would just assume that is what we have. AN's are another whole matter and NF2 is even more of a challenge to explain!
Cheryl R
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Hi Debbi -
Today is another hot one. I don't know if you went out today, but if you don't have to stay in the air conditioning. It is brutal. I don't know anything about Bells Palsy but iI don't really think you look like there is anything wrong with you. If I didn't know better I wouldn't even guess You'd had surgery six weeks ago. You really do look great and I stand by what I said before. Only people who know you well would think you look any different and even they might not be able to tell why.
Wendy
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Today's successful outing...
Lunch with a colleague (who hasn't seen me since surgery) - he concurs that I look just about like myself - until I smile! My smile is definitely a dead giveaway that something is wrong on the mother ship. Unfortunately (or maybe fortunately) I tend to be smiling and/or laughing much of the time, so those around me get the full pirate smile effect. Next time, I'll post a picture with a (half) smile.
However, pirate smile aside, lunch was a success in terms of all the food staying in my mouth, no embarrassing dribbles! And, Carl kept saying that he couldn't believe how good I looked (Yep, I am a sucker for a kind word these days!)
I do notice that I get very tired if I am talking for awhile - I think the effot of enunciating my b, p, m and w sounds may be a factor. Does anyone else with facial numbness (BP, whatever) find this? My jaw, up in the joint by my ear, also gets tired. Oh, what a strange new world!
So, lunch was so successful that I decided to push the envelope and go to Shop Rite for some groceries. it's kind of cheating to go in the middle of the afternoon, but I am not quite up to "riush hour" shopping yet! Anyway, bagged some salmon and asparagus, so dinner will be served tonight after all... Of course, I am not exhausted and may try to take a quick power nap...
And, yes, Wendy, it is hotter than the gates of H#@* outside - let's pray for relief!
Cheryl, thanks for the BP info - so, basically, it is like we have "Super" BP!! Great, I love being a winner!
Debbi
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Debbi-
I forgot about your lunch today. Glad to hear your co-worker thought you look great too. I'm sure your smile will improve with time. Small successes lead to bigger ones.
Wendy
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Hi Debbi,
I've just finished the last 10 pages or so of the posts here. I hope all is going well for you considering what you've been through. As far as the picc line/shower wrap. My daughter, 17 years old at the time, was in the hospital for 3 months (a lot of complications for her but now is doing great) and was sent home with her picc line that she had for another 3 months. The blood at the site did happen to her and because she was going through 6 weeks of radiation, post hospital release, she was fortunate enough to have nurses and doc's around her all the time that said her line looked fine. Because she was so unstable/weak during this time I had to help her into the shower. What we did was take a ziplock storage bag, cut open the bottom, slip it on her arm and tape both top and bottom off with the paper tape that they gave us at the hospital. Then I always cleaned the tip of the line afterwards with a sterile alcohol pad. I cut off the toes of new tube socks and kept her line covered at all times. We were told that this was very important especiallly while out in public. She also had a HHC nurse that did a good job taking care of the picc line but still she was not confident enough in her to remove it. After her radiation treatments were over and she got the go ahead we went to the hospital and had the nurse there that helps place the lines remove it. It was very quick and painless. Chelsea had her line because her veins had all but disappeared and they could no longer place and IV. It was also used for TPN, which was her source of nutrition as she had no swallow reflex and although she had a feeding tube, she had developed a situation where she couldn't keep anything in her stomach. Finally when she was able to keep food down they felt it best to keep the line during the radiation process in case she had any other problems. It was used a couple times for blood draws during that time.
Have the doc's given you any idea when they''ll remove the picc line? I'll be keeping my fingers crossed that it will be soon and things will continue to get back to normal for you.
Take Care,
Michelle
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Hi, Debbi:
Just popping into your thread to offer my encouragement and compliment your progress. The luncheon sounds like it was pleasant and another step toward normalcy, which I know is your goal, as it was mine - and as it is for all post-op AN patients.
I'm sure the lack of facial movement is annoying but I have every expectation that it will resolve soon. Meanwhile, you're looking fine and obviously coping well with this temporary impediment. Luncheons with friends, grocery shopping....you're slowly but surely 'coming back', Debbi!
Thanks for the updates, too.
Jim
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Wow, Michelle - I can't imagine how heartwrenching it would be to have your child go thorugh all of that. She sounds like a remarkable young woman - wiht a great mom. Is she okay now?
Thanks for the ideas re: showering. At the moment, I am using Glad Press 'n" Seal, along with the surgical tape, or packing tape (depending on how long I plan to be in the shower). Hhmm. Maybe I should write to Glad and give them a heads up on this new and innovative use for their product??? ???
I am waiting to hear from Dr. Louie today as to whether I continue the IV for another week, or stop at end of day this Friday. I am hoping for Friday - in which case I can probably get the PICC line out next week (which would be wonderful!!) I long to have a semi-normal shower with only my eye taped shut!
I am definitely feeling a lot less fatigued that I was a few weeks ago, which makes me believe that my body isn't expending lots of resources fighting an infection anymore - fingers crossed.
Waiting for the HHC nurse to come by any minute now to draw blood and change my PICC dressing.
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Debbi~
Do they draw blood from your PICC or somewhere else? My HHC nurse never took blood, but I had to go to the Dr. every week & they took blood before & after I "infused" - of course, the Dr. is only 5.5 minutes away from me (as is about everything in this town!)!! ;)
K
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Hi Kay - the first nurse (the bad one) drew blood from my picc line. However, the orders say to draw blood from a "perihperal" vein, so the new nurses have been drawing from my left arm. They draw right before my infusion.
I am going to be on pins and needles today waiting to hear from Dr. Louie - it would be totally great if the next nursing visit if scheduled to remove my PICC line!!!!
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So glad to hear your lunch and shopping adventure went well, Debbi! And I don't think your friend was "being nice" when he expressed surprise at how good you look--I think he was being perfectly honest! (In fact, he may have been a little nervous about what to expect in light of all you've been through, and was delighted to see that you're still "you", no question about it!)
Re getting tired from talking--this was definitely an issue for me before I had the nerve graft, and even for a year or two after. I guess with less neurons firing to make those facial muscle fibers move, it's kind of like when a lazy person doesn't want to get up off the couch... :D
Re Bell's Palsy: The wonderful cantor (singer) at our synagogue was struck with Bell's Palsy in the middle of Rosh Hashanah services two years ago. It was very scary for me watching her--I probably caught the droop beginning in her face before anyone else in the congregation, and was so relieved to learn a few days later that it wasn't due to an AN. I remember giving her all kinds of advice on how to protect her eye (which her doctor really hadn't stressed to her). She didn't sing for Yom Kippur services 10 days later--doctor's orders, and thank goodness she listened to them, as Yom Kippur is a physically strenuous holiday to begin with. I can only imagine how hard she was working to continue to sing beautifully for over an hour with half her face paralyzed...
Carrie
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Carrie - amazing story about your cantor! I can't imagine trying to sing with this. Talking is hard enough. Not surprising that you noticed her facial "droop" right away - I guess we are very tuned into that "look."
Interesting (and comforting) to know that you experiences the same fatigue from talking. I find that the joint in my jaw up by my ear is very tired and sore at the end of the day. So much so that chewing is a little uncomfortable. I've been alternating cold and warm compresses and, of course, my trusty ibuprofin which seems to help.
I am scheduled to give a three-hour workshop/seminar in late July, so really hope that this gets better by then - I'd have to have to ice my whole face! ;D
Debbi
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Carrie, - that is amazing that the cantor could continue like that! I'm pretty sure if I went numb all of a sudden, I would have been too freaked out to remember what I was singing!
Debbie - I still get the sleepy speech. When I get tired in general or have just been talking a lot (which happens frequently), I start to sound like I have half a mouth full of marbles. Then I know it's time to shut up and go to bed. I also have had terrible TMJ symptoms. My dentist says I've had it for years, but he says that to everyone. I never had any problems until after my surgery. Now that my bite if "off", as he calls it, due to the lack of muscle tone on one side, I really have issues. But, fortunately, my trusty ibuprofen or tylenol seems to do the trick for now.
Lori
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Hi Debbi -
I hope Dr. Louie has good news for you today and I hope for your sake he does. I'm sure having the PICC liine is a real pain and especially when you shower. The preparations alone sound like you must work up a good sweat before you get in. I'm crossing everythng crossable and sending positive and healing thoughts your way.
Lori - I'm so sorry to hear you still have so many problems this long after your surgery. I knew you had some but didn't realize how many. You certainly do have a great sense of humor and outlook in spite of your challenges. I've noticed that going through the AN experience seems to make most people stronger. I can tell is must have done that for you.
Wendy
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Debbi -
I'm hoping that Dr. Louie has good news today ;D
Jan
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In the interest of time - and because I'm lazy, here's what I just posted to my blog...
Rats! Well, if that doesn't sum it all up, I'm not sure what would...
While my blood markers are moving in the right direction (I can't believe I'm even blogging about this...), they aren't quite where they need to be yet. Soooo - that means I continue with the IV infusions twice a day. Triple Rats!!!
I must confess to being pretty disappointed. However, Dr. Louie is doing the right thing, and I have complete confidence in him. And, another week of IV still beats re-opening this big incision in my head...
Okay, well, when you put it that way, Debbi...
So, had lunch with my friend and colleague Carl yesterday which was just great. The fact that he didn't run shrieking from the restaurant was an immediate good sign! Seriously, it was great to see someone who knew me "before" and realize that I'm still me, goofy smile and all.
HHC nurse came this morning - a different nurse than last week, but just as excellent. She took about a gallon of blood - which I then FedExed off to the lab (no, I'm not kidding - FedEx ships blood!), and changed my dressing and PICC "nozzle." I mention the latter because the new nozzle works differently than the last one and I had quite a challenge disengaging my IV when it was done. That triggered a call to the HHC company, who then carefully walked me through adding a 12 inch extension to my line. Oh, never mind. That's just too weird, isn't it?
The whole reason for this HHC sage is that in the process of installing my new addition, I spilled rubbing (as opposed to drinking) alcohol all over my cell phone - which promptly died about an hour later. Over indulgence is never good. That in turn triggered a trip to the local Verizon store. After a short - and expensive - 15 minutes, I found myself leaving with a new Blackberry cell phone. So far, I've figured out how to make a call. I am now in search of a teenager to show me the other fine features of this amazing bit of electronics. And I thought the bosu ball was set on earth to challenge me...
Well, see, I feel better already. I am now going to sneak up on the Blackberry and see if I can figure out how to sync it...
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OOOO, I wanna coe over and see your new Verizon toy! Make sure to keep it off alcohol, though.
;)
Love your posts!
Mary
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Don't you just love that Verizon New Every Two program where you get a new phone every 2 years? It takes me that long to figure the thing out and then it's time for a new one! AAHHHHH!!! I'm sure a Blackberry would take me a good 4 years to figure out.
Anyway, Debbi, glad things are moving in the right direction - in slow motion, of course, but moving anyway.
Wendy - they say what doesn't kill you makes you stronger, right? Must be true. Really, my problems seem very minor compared to what some have to deal with, so I'm just thankful for that. If there was just some way to spread them all out though, that would be good. Maybe I should distract myself trying to figure out my cell phone before the 2 years is up? ???
Lori
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Hi Debbi -
I hope Dr. Louie has good news for you today and I hope for your sake he does. I'm sure having the PICC liine is a real pain and especially when you shower. The preparations alone sound like you must work up a good sweat before you get in. I'm crossing everythng crossable and sending positive and healing thoughts your way.
Lori - I'm so sorry to hear you still have so many problems this long after your surgery. I knew you had some but didn't realize how many. You certainly do have a great sense of humor and outlook in spite of your challenges. I've noticed that going through the AN experience seems to make most people stronger. I can tell is must have done that for you.
Wendy
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Debbi,
I'm jealous, my cell phone is about 15 years old. I wouldn't know what to do with a Blackberry. My phone doesn't take pictures or even have text messaging. My niece couldn't believe it when I told her I couldn't text message her.
Rosalie
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Debbi -
Darn! I'm really sorry you're still stuck (no pun intended) with your PICC. As you said though, Dr. Louie did the right thing, it is certainly better than the alternative. Hopefullly another week will do the job and then you'll be free of that thing once and for all! In the meantime, keep your spirits up as this too shall pass.
Wendy
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Hi Debbi -
I noticed you haven't posted anything about yourself in a couple of days and wanted to check in and say "hi!". Hope you are feeling okay.
Wendy
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Good morning!
First of all, for those who are envious of my blackberry - don't be! I am completely beaten by it - and am going to have to admit defeat and take it back to the kids who work at the Verizon store to learn how to use it. At least I can make and recieve calls!
I am settled in for another week of IV infusions. This has definitely lost its appeal ... hey, wait, it was never appealing! ???
Simple pleasures like taking a shower have taken on the feel of an onerous task - once I'm done taping my eye shut and sealing my arm in Glad Press 'n' Seal ... well, you get the picture. The goal at that point is to get in and out of the shower in the fastest time possible, thus reduing any risk of getting the PICC line wet, or the eye soaped. Sigh. I would love to take a long soaking bath, but the only way I can figure out how to do that would be to tape my arm to my head!! ::) LOL
Okay, so whining aside - I am definitely feeling better these days. It has been 6 weeks and a couple of days since my surgery (and three weeks since my return visit to NYU). I still get tired, but not like I did even a few weeks ago. Some of the random pains in my head and neck are gone or at least a lot better. The hair around my incision has grown about an inch and it looks like the scar will untilmately be hidden in my hairline. Jury is still out on the SSD, but there are things I can do about that later. My face is still refusing to move (other than that one brave little muscle under my eye) but I have confidence that it will eventually be okay. It is not as droopy as it was in the early days, so I take that as a positive sign. And, I'm still me!!
So, for those who are waiting for surgery or other treatment - take heart! Life goes on and it is pretty darned good!
Wendy, hang in there and let me know when you have your pre-op date!
Debbi - ambling along the path to recovery...
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Debbi:
Thanks again for the update....one of those good news-bad news reports. I'm sorry for the bad news about the PICC line having to remain a part of you for another week but I'm encouraged by your obvious signs of healing and recovery. Aside from the incision issue, which is being addressed, everything else seems to be coming along nicely, if not as rapidly as you might prefer (like, immediately). :)
Your standoff with your new Blackberry is amusing and reminds why I never bothered with any cell phone that I couldn't get for free and that I had to ask my son how to operate. However, I wish you success in your quest to conquer your phone. ;)
Your closing comments ("for those who are waiting for surgery or other treatment - take heart! Life goes on and it is pretty darned good!) are better said than anything I might venture to add....so I won't.
Keep ambling, Debbi. You're doing great and showing many others the way to handle AN surgery recovery. Thanks. :)
Jim
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GOOOOOOOOOOOOOOOOOOOOO Debbi!
I just admire you more and more daily! your attitude is inspirational. While I know this all seems slow to you, to me you just went through surgery and I can't get over the progress you have made through your tenacity and spunk.
You go girl!
Big hug,
Mary
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The hair around my incision has grown about an inch and it looks like the scar will untilmately be hidden in my hairline.
Debbi -
your scar will definitely be covered by your hair and believe it or not, at some point it will most likely become pretty invisible. I noticed that by the time I had my BAHA surgery - about 9 months post op - my AN surgery scar was extremely hard to see.
And please don't resort to taping your arm to your head so you can take a long, hot bath. You might dislocate your shoulder :o The PICC line will be out before you know it.
Hang in there,
Jan
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Debbi, I am sorry to hear that things aren't going the way you want. Things don't always go as planned, do they? I was supposed to be driving and back to work by now. ;) The thing is that your doctor is involved and you are doing things to correct the problems. You are doing well and we're all proud of that. Things will be back to "normal" soon enough for all of us that had procedures around the same time. Stay strong, my friend.
Brian
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Hi Debbie: I understand what you're going thru face & shower-wise. I'm glad to see that you realize this is all 'temporary', & it will all improve in time.
I saw the picture of you - your paralysis must be improving b/c I don't see a 'droop', & I am so happy for you to look as well as you do.
It seems to me your face will not be permanently paralyzed as mine was (I'm doing the 'happy dance' for you ! !).
This is all very frustrating to be sure - but isn't it funny how we get 'used to' doing the chores - eye care, bandaging with plastic, etc.
Keep a peaceful heart my friend - from your writings I see you are an 'optimist', your positive outlook helps the healing.
I believe the journey this AN has taken us on makes us so much stronger (if that's possible b/c I see that all of us are very strong people who have come together).
Always good thoughts, Nancy
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Hi Debbi-
Glad to hear you are feeling a little better in general. Sorry you are still stuck (again, no pun intended) with the PICC line. Hopefully, you will soon be free of it. I'm sure it must be frustrating. In the meantime you can dream of taking a long luxurious bath. If I were you I'd buy some special bath beads or something like that to celebrate that day. Sorry I haven't been in touch really, but it's been a busy week with a lot going on, happily all good and not AN related! The waiting is driving me crazy as I feel I am stuck in a time warp or something like that. I am very much hoping I will have my date by the end of the week. I'm seeing the new neurosurgeon (Dr. Chen) on Thursday, which now seems miles away. Hope you continue to feel a little better every day.
Wendy
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Wendy, don't forget to breathe! Thursday will be here before you know it - and then your surgery date will be looming. You're really handling things so well!
As for me ... a good weekend. I overdid a little yesterday, but it was worth it. A friend of mine, Ellen, came up for a visit and I took her with me to shop for prescription sunglasses - then we went to a new local restaurant and had a wonderful late lunch and WINE!! (which actually tasted like ... wine!!)
Today, however, I was pooped. Took a little nap after my morning IV, then took a long nap this afternoon. This is the first time in about 5 days that I've needed to nap, though.
Tonight, I noticed a couple of raised spots towards the bottom of my incision :( - and one of the spots is quite tender. I had Willie take a couple of pictures, which I emailed off to Dr. Roland. Hated to disturb his Father's Day, and told him that it wasn't urgent and could wait until tomorrow. Hopefully I'll hear from him tomorrow and (also hopefully) he'll say it's nothing. The spot on the bottom actually looks like a little blood trapped below the surface. I hope I am just being paranoid - however, I am so worried that this may be a sign of the infection coming back - I REALLY don't want ot be in the hospital again.
So, please keep fingers and toes crossed that I am just being a "nervous Nelly."
And, Happy Fathers Day to the fathers out there!
Debbi - being paranoid in NJ ...
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Debbi,
I am glad you are feeling generally better. Good for you! Those spots on the scar could be from moisture, heat and humidity. I had the same thing in summer with my C-section scar many years ago. I found a local doctor (no easy feat) who cleaned the incison with hydrogen peroxide and told me to make an effort to keep it as dry as possible. Let's just hope that is what it is. I know you must be very worried. Hope Dr. R will get back to you tomorrow with good news.
Eve
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Debbi -
thinking positive thoughts. Let us know what Dr. Roland says.
Hoping for the best,
Jan
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I dunno what the spots are, but I'm sure they are nothing to worry about. I've had swelling at the bottom of my incison that is tender to the touch. Your doc will know best how to deal with it. I realized my whole head was getting dry (probably from the wrap that I have on more than off). You will be fine! I promise! :)
Brian
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Debbi -
I am concerned for you because of your observations about your incision, but hopefully optimistic. I'm sending healing thoughts to you and crossing everytining crossable. Let me know ASAP what the doc says. I hope it will be good news, you've been through more than enough.
Best wishes.
Wendy
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Morning Greetings from the other end of the PICC line...
So, Dr. Roland's email was waiting for me bright and early - he says the bumps are what is called "spitting sutures" - the body is literally spitting out some of the deep sutures. He says they don't cause any problem, and he can take them out when I see him next in July. Whew. I was definitely having a few bad moments worrying that this was a sign that the infection was coming back. What I thought might be blood trapped under the skin is actually a little black suture - isn't that weird? Well, at least it isn't dangerous!
It's kind of funny/pathetic how little things become potentially scary after surgery of this sort ... I hope I'm not turning into a scaredy cat! :o
As always, thanks for the words of comfort and encouragement.
I am going to try to do battle with our cherry trees today - they need to be pruned! And the rhododendrums need to be cut back too - so, armed with gardening gloves and nippers, Debbi charges forth....
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Debbi~
SO glad it wasn't the infection!! YEA, an anwer to prayers!!
Have fun being a gardener today but don't over do it!!
K
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Debbi -
never heard of "spitting sutures" - guess I learn something new every day :D
Glad to hear it's not another complication - whew!
Be careful with the "nippers" ;)
Jan
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Debbi - I'm a suture spitter too. My body just doesn't absorb the dissolving kind, so eventually they work their way through the skin. I've trained James to remove them if they're in an area I can't see well enough to remove them myself.
Don't prune any fingers out there!
Lori
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I've trained James to remove them if they're in an area I can't see well enough to remove them myself.
Bet that comes in handy with the garage surgery. It would appear that James is a man of many talents - and that you've trained him well ;)
Jan
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Good to know I am in such excellent company, Lori! Also good to know I am not the Lone Suture Spitter!
Bushes have been trimmed, and yours truly is now residing inside where it isn't hot and sticky.
Here's my weekend update photo. I think I've got a bit more movement on the right side of my mouth - not that I can actually move it on my own, more that it seems less "slack."
http://i280.photobucket.com/albums/kk167/debifulco/616WeeklyProgress3.jpg (http://i280.photobucket.com/albums/kk167/debifulco/616WeeklyProgress3.jpg)
http://i280.photobucket.com/albums/kk167/debifulco/616WeeklyProgress2.jpg (http://i280.photobucket.com/albums/kk167/debifulco/616WeeklyProgress2.jpg)
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Pictures look great, Debbi!!
Glad you got the pruning done and are now relaxing in the cool...
K
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You are looking fantastic, Debbi! And I'm SO glad you're OK--no infection, just "spitting sutures" (someone should teach those things some manners! :D )
Glad you are enjoying "back to normal" pleasures like gardening and wine... Sure helps me stay optimistic about what awaits me in trip #2 to postie land!
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Hi Carrie- how are the nerves this week? Your surgery is coming up so fast - I hope you are able to find some calming activities. I am sending you peaceful thoughts...
Lori - maybe James and Willie can open their own garage boogerectomy operation! And, we can sit back and collect the proceeds ... Of course, there will have to be employment for all the other masterminds here from the forum... Hhhmm, it is beginning to sound like a multi-national operation ...
Okay, I think the spitting sutures have affected my brain - no, wait, that may have been the actual BRAIN surgery...???!!!
Debbi - feeling goofy in NJ...
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Well, I hope I'm one of the "masterminds" that you decide to employ. Working for Lori is sure to be very fun - and highly amusing :D
Great pictures, Debbi ;D
Jan
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Jan, you are at the very TOP of the master mind list!!
Debbi (one eye on the sutures)
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Debbi:
Glad to learn that your incision is normal and uninfected. My body must like to absorb sutures. It's funny that way. :)
Thanks for the photos. Not bad for just over 6 weeks out of surgery. Knowing you as we do, I'm certain you'll keep improving.
Meanwhile, your buoyant attitude is encouraging to all.
As rewarding as it may be, please don't overdo the gardening. Now, get some rest...you've earned it.
Jim
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I used to LOVE to play Mastermind...
K
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I will be in charge of deciding how we spend all our money. I'm not sure I have any other skills. But I'm darn good at spending money! ;D
First thing we'll buy is a few board games for Kay.
Jan, I've trained James pretty well. It's a work in progress. But I did have more luck training him to get my newspaper from the driveway than I did with my dog. Although I think it's less about his training than it is about my dislike of sitting in downtown traffic for an hour for a 2 second dr. appointment to pull out few sutures.
Lori
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"Spitting sutures" ? Never heard of them. I'm glad that it wasn't more more serious than that. Employing all the "masterminds" of the forum is quite a job. ;) Good luck with that and everything! Good pics!
Brian
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First thing we'll buy is a few board games for Kay.
Oh, come on, Lori. Can't we buy K something more exciting than that ??? :(
Jan
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I NEED excitement... ::)
K
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I NEED excitement... ::)
K
Don't we all ;D
Jan
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Buy her a tattoo. ;D
Steve
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On one condition - that I can buy you one, too :D
I was thinking yours could say "May I knit you a hat?" ;)
I'm sure my fellow mastermind Lori could find some dollars in the budget for that.
Jan
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Hi all -
Debbi, you look great!! I just sent you an e-mail, but being here answers most of my questions. I'm so glad it's not another infection and you're just spitting sutures. I did that once with another type of surgery and it scared me too! I hope I'm one of the master-minds you're planning to employ. I love working with Jan and Lori and they can vouch for me. Lori thinks I'm a wonderful investor too! Take care of yourself and try not to overdo it.
Lori - You're back! Good to see you! I explained to Jan and maybe you too in an earlier post, I am still hoping to meet you two, maybe at the Jersey shore. It just depends on when I get home from Florida, how much time I have to get my pre-testing done, assuming my tentative date turns into an aactual one, and what I have left to do in preparation for my surgery. I am hoping to be ready to go at any time as far as getting what I will bring to the hospital, etc. before we leave for vacation. This month is so jam-packed, I don't think I have time to do anything that isn't already on my calendar. Hop all is well with you.
Hi Jan!
Wendy
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I was thinking yours could say "May I knit you a hat?" ;)
I think tattoos have to be more threatening than that.
More like "I will knit you a hat." :D
Steve
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I think tattoos have to be more threatening than that.
More like "I will knit you a hat." :D
So, does that mean you're taking me up on my offer? LOL
Jan
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Good grief, people! I step out for awhile and Jim is tatooing hats??? Oh, wait, maybe I got that wrong. At the very least, I read something a group tatoo event next year... Oh, and did I hear ... Party at Jan's House?!
Okay, silliness aside - I am SO over this PICC line thing! Dr. Louie called last night to tell me that blood levels continue to improve and we'll wait to see what tomorrow's draw shows - maybe I can go off the IV this weekend. Please keep fingers, toes, etc crossed. I know four weeks isn't that bad in the scheme of thigns - but it is starting to feel like an eternity. I would like not to have to plan my day around IV infusions (Kay, I know you can relate!) Okay, enough whining. Sorry...
In anticipation of getting the thumbs up to get the PICC line out sometime soon, I am seeing my PC doc tonight to see if he'll give me a prescription for a mild anit-anxiety pill. I know I'm being a big weenie, but I am so wigged out by the idea of having this line taken out that I know I'll have myself worked into a state of high anxiety. Isn't that silly? Well, at least I don't feel any need to put on a brave face and suffer in silence... ;D
So, minor grievances aside, I am feeling pretty good these days. I think I've only napped once in the last week, and the random pains in my head and neck are getting better (or maybe I'm just getting used to them :-\) The bruising from the belly incision is FINALLY gone, although I won't be entering any bikini contests in the foreseeable future - ha!
A little piece of the giant scab on my head worked its way off last night, so I have a little bleeding - but nothing to worry about. I keep a small dressing lightly over that area at night and sometimes in the day.
Ladies, you'll understand this next one - I haven't seen my hair stylistin TWO months!!! And, I'm 52. Need I say more??? Dr. Louie said that no chemicals should get near my incision yet. At this point, I'm wondering if I can get highlights on half of my head - would that be trendy??? Well, the very fact that I am worrying about my hair is a good sign isn't it?
Enough rambling. Let me go see what else is going on in Forum-land...
Debbi - still spitting stitches... Duck!
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Debbi~
From 1st hand experience, I can say that it seemed FOREVER when it was happening, but now it seems like a tiny speck in the realm of things. I know that doesn't help now...but think about how it will be to look back and think of everything you have had to conquer and what a STRONG woman you are!! At least you aren't trying to fit in ball games and end of the school activities around the IV's - I would RUN home so I could stay on schedule. Oh, I forgot, the time we had to fly to Houston with all my IV stuff and Dave rigged up a "pole" with a guitar stand and the curtain rod thingy!! ;) Good memories (that I'd rather keep in the past!)...Getting the PICC out is VERY simple and non-invasive, but if you need something to relax you - go for it!! Hope you get to be PICC-less soon!
K
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A guitar stand - curtain rod IV pole? I think we might have to hire Dave to work in the surgical garage. Tell him to send a resume. ;D
Debbi - I think coloring one half of your head would be very trendy! Remember the 80's hairstyles with the ponytails on one half, or half of your hair long and the other half a buzz cut? All you need is some leg warmers and Lee press on nails!
Lori
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Lori~
As I was typing that I thought that he might go good in the garage business - I'll let him know. He is always looking for another job and would LOVE to move!!
Debbi~
I agree with Lori on the hairstyle!!
K
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Debbi -
I'm with Lori and K on the hair thing - do something wild. I shouldn't be the only rebellious one :D
Although I haven't been through nearly as much as K has, I agree that one day this will all seem like a distant memory. I know that my experience of the room spinning around me the first time I opened my eyes post op has pretty much left me. Although all I'd have to do is drink a little too much to reinact that one LOL
Seriously, you have been through a lot and your positive attitude has been a blessing. Sooner or later Dr. Louie will give you permission to "lose the lemon", so hang in there - that day is coming!
Lori -
I'm thinking Dave shouldn't have to send a resume - IMO, he's in already. Just helping K with her IV and packing her face warrants a spot in the garage - the guitar stand/curtain rod thing just solidifies his place ;)
Jan
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Jan, what kind of organization do you think I'm running here? We must at least pretend we are professionals. I didn't say I was going to read his resume. I just think it would look impressive if we stick in in a frame and duct tape it to the garage wall.
I hope you don't mind - I'm going to print off some pictures of your BAHA, your BAHA hat and your latest "artwork" to hang up too. Let people know we are a full service garage. Now we just need to hire someone with some coloring skills to do the tattoos. My 5 year old is pretty good at staying in the lines, but she's not allowed to play with sharp objects yet.
So, Kay, tell Dave he'll be in charge of stuffing faces and miscellaneous hardware assembly.
Lori
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HI Debbi -
You are a riiot!! Glad to hear Dr. Louie has left you with a good feeling. I'm praying you get rid of the PICC line his weekend. It must seem like a ball and chain by now. I can understand your aprehension and don't blame you one bit for feeling anxious about having it removed. You're right too, no need to always put on a brave face. I'm crossing everything croissable, hopefully it will happen for you!
Wendy
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HA HA!! You all have me spittig stitches - oh, I mean you HAVE me in stitches! Thanks, Wendy, Jan, Kay, Lori for making me laugh, as always.
I had another successful outing today - no one ran screaming at the sight of me, which I take as a good sign. I also managed to keep all food and beverages in my mouth at all times - again, a good sign.
Progress on my face is still numbingly (pun intended) slow. Hey, has anyone heard of "Facercise"? I just got the ANA newsletter in the mail today and there was a reference to it in there.
Off to see my PC in a few...
Debbi - in stitches ... and spitting them, too...
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Haven't gotten my ANA newsletter yet. For some reason I always seem to get mine later than everybody else ??? Maybe I need to do more kissing up to the moderators :-* LOL
Facercise? Sounds like an interesting concept.
Jan - not spitting, but thinking of charging Lori royalties for using my pictures ;D
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Jan, would you like one of my stitches? It wouldn't be quite the same as spitting your own stitches, but close...
I'm a giver, you know...
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Thanks for the very generous offer, Debbi, but after much consideration, I think I'll have to pass ;)
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Oh, Jan, if I had known you collect these type things (spat out stitches and the like) I would have saved you my staples!
Debbi - I was at the gas station yesterday - pumping my own gas, which is unheard of for a Jersey girl, I know, but as the tank was filling, I decided to try some of the juice I had just bought - without a straw. Poured it all down the front of me - which I'm sure provided much entertainment on the security cameras that are all over the place. Didn't do much to quench my thirst, but sure cooled me off. ;)
I got my newsletter, but it was so mangled, I had to tape it back together before I could attempt to read it! Ugh.
Lori
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Good morning, people!
First of all - Lori, what kind of Jersey Girl ARE you??? We don't pump out own gas!! Ever. Now the juice sloshing thing is another story...
And, Jan, I'm wounded (literally) that you don't want my own personally spat out sutures... :'( Okay, over it now!
I had a littel pity party for myself last night - not sure why, but I started to feel sorry for myself. Fortunately, Willie was there to hold my hand, let me whine, and tell me he still loves me, crooked smile and all. I guess it's normal to get some occasional "downer" times. Feeling much better today. HHC nurse was here this morning to draw blood and change the PICC dressing - pathetic when that's the highlight of my day...
I am embarking on a new client project, which is good for me mentally and financially. I do behavioral assessments (along with coaching) and am doing a fairly big project for a company out in California (all via phone and internet, so no travel). So, that will keep me busy for a couple of weeks, which is good (less time to feel sorry for myself...)
More later...
Debbi (keeping FedEx going with my blood shipments...)
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Debbi - I know - it makes no sense to me - down here you can drive through EVERYTHING because is seems everyone is too lazy to get out of their cars (sorry, native southerners, but I call it like I see it! :D) But they have no problem pumping their own gas! It's crazy, I tell you.
I usually make my husband go fill up the tank for me, but sometimes when you're running on fumes, ya' just gotta do it yourself. And see what happens - you spill your juice.
Lori
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Lori~
I honestly do not even know of a station around here where they still pump your gas for you!!
K
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I know - there aren't any here - or I would have found them! When I lived in NY, I knew exactly where the full service stations were and I only went to those. Then when I got to Virginia I had to get a lesson from James on how to actually pump gas, since I'd never done it before. That's why you just have to love NJ!! And it's cheaper there than anywhere else I've ever lived.
Ah, feeling homesick today....I need to get back to a coastal state soon. I'm having Atlantic Ocean withdrawal.
Lori (dehydrated in Nashville)
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Wow, you guys have been a busy lot since I've been out. Debbi - I hope your de-picced soon. Lori - I believe there's plenty of water in Iowa at this time, if you can't quite make it to the coast.
Tam
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Lori~
What is the coast... ??? ??? ...we CERTAINLY don't have THAT here!!
K
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I honestly do not even know of a station around here where they still pump your gas for you!!
K -
Don't know of any here either.
Debbi -
pity parties are totally acceptable. I have one myself now and then - an occasional tantrum, too. Sometimes I just feel I'm entitled ;)
Lori -
not really into saving "surgical momentos" like staples or stitches, but believe it or not, my older brother is :o My dad has had both of his hips replaced and my brother actually asked the surgeon to save the hip bones for him. Last I knew he was displaying them in his living room under little glass domes :P This is my brother who is the taxidermist who lives in MI, so don't worry, you won't be encountering him on your Jersey vacation ;D
Tam -
you have missed a lot in a short time. Time doesn't stand still on this thread. I just realized today that there are 33+ pages now!
Jan
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Jan, I'd hate to see the rest of your brother's decor.... What do you do with hip bones under glass - use them as book ends? Let's hope no one else in the family has anything else removed! :o My sister saved her staples from her C-section. And guess what - you may get to meet her! Bet you're looking forward to that. Oh well, there's one in every family, I guess.
Iowa, why didn't I think if that? Who would have thought you could buy coastal property in Iowa?
Lori
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I was thinking yours could say "May I knit you a hat?" ;)
I think tattoos have to be more threatening than that.
More like "I will knit you a hat." :D
Steve
C'mon Steve...you can be a bit more threatening. How about "I will knit you a hat and you WILL like it!"
Okay, okay, I know it might be a bit long, but if someone else is paying... ;)
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Lori -
I didn't have a C-section so I couldn't save my staples, but I did save my twins' umbilical cords when they dried up and fell off. Don't know if that's weird or not. If so, I guess there's two in my family - instead of one ;)
oHIo -
I think you just designed Steve's new tattoo - although I'm still waiting to see if Steve is agreeable - perhaps he's ignoring me ::)
Jan
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Hi All-
I am pasting this entry from my blog to save some time and keep everyone up to date...
The BIG news of the week --- Dr. Louie called yesterday to say that, barring anything unusual in the blood work from yesterday (which we'll get results from today) I can stop the IV infusions at the end of the day on Friday!!!! Oh happy Day!! It will be SO nice to be able to sleep in Saturday and not have to "hook up" to the lemon.
I am scheduled to have the PICC line taken out Monday morning - the HHC nurse is going to come over early in the morning and take it out. I will be FREE!! I won't know what it is like to shower without wrapping myself up in Glad Press 'n' Seal first!
Now the cautionary note in all of this is that Dr. Louie said that it will be 7 - 10 days before I am "out of the woods" in terms of the infection recurring. So, I'll be keeping fingers and toes crossed AND I'll be extra careful with the incision. Willie will be on "wound inspection detail" every night to check for any changes.
Hopefully next week, as the antibiotics clear my system, I'll feel less fatigued - that's something to look forward to!
Meanwhile, under the category of More Great News - my dad got a clean bill of health on his cancer follow up this past Monday (big hugs, Dad!)
So that's my story ... and I'm sticking with it.
Debbi - soon to be PICCless in NJ...
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Debbi -
things are definitely looking up today - YEA !!! ;D
I think you should do a happy dance! Where's Capt. Deb ? - we need some cool graphics ;)
Jan
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Debbi~
I AM doing the Happy Dance for you -- I TRULY know what great and liberating news this is!! Will you be on oral antibiotics for a while? Good news about your Dad's follow up too!!
K
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Debbi--
Encouraging reports for both you and your dad--a double reason to celebrate! Hooray!
;D
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Well, it seems like I MAY have spoken too soon. Results of yesterday's blood work showed a sudden and sharp increase in my C Reative Protein. (Everything else looks fine.) Dr. Louie is out of the office for the next few days, so am going to try to reach Dr. Roland to see if he can shed any light on this. As it stands now, I am off the vancomycin tomorrow night, but orders to remove picc line on Monday are now on hold until Dr. Louie can be consulted Monday morning.
Yep, that's me you see on the ledge right now...
Debbi
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OH MAN!! That just stinks...I had to keep my line in for a whole week extra, but got to stop doing the infusions. How actually ask me if I wanted to keep the PICC in longer!!! Sure...I don't have anuthing better to do than tape my arm up before showers!! ::)
K
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C-Reactive protein is a measure of inflammation, not necessarily infection - I'll keep my fingers crossed for you Debbi!! Let me know when you're in the clear and I'll wave a flag for you or something, as I don't think I'm quite up to the dance yet!
Please back away from the ledge and have some chocolate, my dear,
Tam, who was a medical technologist many moons ago...
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Debbi -
step away from the ledge, but don't stuff your dancing shoes back under the bed just yet. It's only a matter of time before Dr. Louie gives you the go ahead.
Keep the faith,
Jan
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Thanks so much. This is SO discouraging.
However, the beloved Dr. Roland emailed me back that he doesn't think there is anythign to worry about, and asked if I'd like to come in Monday afternoon to have the spitting sutures taken out. At the same time, he will have a look at my incision and my face. I love that guy - he is just the most caring and conscientious surgeon I've ever known.
I'm off the ledge - but not happy...
Debbi
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Hi Debbi -
I just finished catching up on this thread. It sounds like a good news/mediocre news day for you. Hopefully Dr. Roland and Dr. Louie will have good news for you on Monday. My fingers, toes and shoelaces are all crossed for you! I forgot who said it, but I agree -- have some chocolate it always seems to make anything better. It's my favorite mood enhancer. Hope it helps you too.
Wendy
Lori - I understand your need to see the Atlantic Ocean. Staten Island is surrounded by New York Harbor, Raritan Bay and the Atlantic on one side, but there's nothing like being at the beach and digging your toes into that sand that the Jersey shore and Rockaway Park (my old hometown) have. I know how much you must be looking forward to it. When we lived in Rockaway, we lived right off the boardwalk, literally about 20 feet. Sometimes I really miss that.
Wendy
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Debbi - OFF THE LEDGE! NOW!! Go get yourself some chocolate. Don't make me come up there, missy! (Can you tell I have kids?)
Wency - ah, yes, nothing like the beach. When we first moved to Virginia Beach, anytime I'd had a bad or stressful day, James would hand me my beach chair and just say "go to the beach". Nothing like a half hour of sitting by yourself staring at the ocean and watching the dolphins swim by to de-stress you. There were some days I wanted to build myself a grass shack right on the sand so I could stay there! ;D
Lori
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Good News!!
After taking matters into my own hands this morning and faxing an update to Dr. Louie's office with my questions/concerns, and emailing Dr. Roland with questions and pictures ... apparently someone called Dr. Louie on vacation and he and Dr. Roland and the IV company all talked - and I can get the PICC line out on Monday!!! Since I am scheduled to see Dr. Roland anyway, he says he'll take the PICC line out. I am SOOOOO happy to have this chapter in my recovery drawing to a close!
I am already planning a long celebratory shower when I get home Monday night!
The last lemon will be infused tonight - see ya later, sucker (sorry, moderators...)!!
I am a happy camper!
Debbi - looking for Lorenzo's Chianti...
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Wonderful ;D
Oh Happy Day :D
Maybe I can FedEx you a bottle of my Dr Louie's wine ::)
Anne Marie
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Anne Marie, I'm ready!! Your family sounds like my kind of people - lovers of food and wine. Wasn't there something about a white pizza somewhere here???
Debbi
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Debbi~
GREAT news -- happy dance for you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! ;D
K
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Debbi:
No need to apologize for being anxious to bid your 'lemon' adieu.
I join everyone else that has followed your AN journey and admired your spirit and determination in congratulating you on the upcoming move forward in your recovery...the loss of the PIC line. Enjoy your shower and thanks for sharing your happiness with us. It's downright infectious! :)
Jim
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Debbi - I'm glad that you'll be PICC-less next week! That is great news! I'm happy for you!
Brian
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Congratulations, Debbi - wonderful news 8)
Jan
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If I could grin ear-to-ear right now, I would. As it is, I am grinning cheek--to-ear. Now, I think I need to get a do-rag to keep up with Tammy.
Thank you all, as always, for your support and for always making me feel welcome and cared-for. :-*
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Hey, Debbi - it sounds like Pooter is just about done with his do-rag and it's pretty impressive (I've seen pictures ;) ) maybe he'll lend it to you :D
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Debbi -
What fantastic news!!! I am sooooo happy for you!!! It was terrific of whoever contacted Dr. Louie on vacation and even nicer of him to respond. Monday is just three days away. I hope the anticipation doesn't make it seem any longer than that. I'll do the dance of joy for you!! Congratulations on your wonderful news. Now, behave yourself young lady (I wanted to get into the mother act with Lori) and don't overdo it or you won't get any more Chianti!
Best wishes,
Wendy
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Heh.. I'm so blunt these days that I don't even put a do-rag on the wrap. *shrug* I don't care who sees the wrap. I look REALLY cool with the wrap and my nice, new sunglasses that fit over my glasses! ;D
Pooter...
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Yes Debbi, you have a very good memory.....Louie did have a pizzeria for 17 yrs.
Actually back in his parents' home town, my MIL's mother was the town baker. My MIL makes the best pizza dough and onion pizza. Yummy!! :P
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I look REALLY cool with the wrap and my nice, new sunglasses that fit over my glasses! ;D
Pooter -
it sounds like another picture is in order ;)
Jan
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Haha...if I wasn't having problems with my domain, I'd upload a pic with the glasses too. Darn the luck! ;) Perhaps soon!
Brian aka Pooter...
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Hooray for Debbi! Hope having PICC-lessness to look forward to on Monday makes the weekend extra nice for you! :)
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Debbi,
Yay! PICCless is the way to go! Congratulations, I am sure it was not fun even if it beats staying in the hospital.
Eve
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Debbi -
YAY! I'm waving my flag for ya! And Pooter, It sounds like we have the same look going on - got my wrap-arounds around my glasses and bandage too. I've got the do-rag for outdoors, and just wear the ace inside. It's truly stunning either way...and yes, Deb, it's time to get a do-rag too. I've yet to receive my knit hat, so I think we'll have to wing it...
Tam
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Can I just tell you all how wonderful it was to wake up this morning and NOT have to get up and infuse an IV of antibiotics! I am a free woman!!!!! I just laid in bed and reveled in the joy of not having to do a darned thing...
I took the 12" extension off my picc last night, so only have the little 6 inch line to contend with until Monday afternoon. Wahoo. I have it neatly tucked in a chopped off tube sock (some of you know what I mean here...) so I don't look like too much of a wacko.
Having my in laws over for "dinner" tomorrow afternoon. For those of you with Italian families, you'll know that Sunday dinner occurs at about 1 PM and lasts for several hours. I have conditioned them over the years not to expect a pasta course anymore ;D so this won't be as taxing as it may sound. Willie is going to grill salmon and I'll do some mashed sweet potatoes and a big Greek salad. And, I've already warned everyone that I may retire to nap if I get too tired. My in laws are VERY loud (it's like a movie, actually) so a nap might be just the thing - I can lay on my good ear and block everything out... :D For those following the wine dialoge, chianti goes very nicely with salmon, as does pinot noir. Maybe I'll have both...
I am counting the hours until the de-picc-ing of Debbi...
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Debbi -
enjoy the Sunday dinner tomorrow - wish I lived in the neighborhood - the menu sounds great!
So, on Monday, do you plan to rush home and take your first "free woman" shower? ;)
Bet you can't wait! So happy for you!
Jan
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Hey Tam - I've got my leopard print scarf from the hospital (my bonnet adornment) - will that work?? Here's the pic...
http://s280.photobucket.com/albums/kk167/debifulco/?action=view¤t=52DebsNewBonnetlook1.jpg (http://s280.photobucket.com/albums/kk167/debifulco/?action=view¤t=52DebsNewBonnetlook1.jpg)
Jan, jump in the car and come on over - friends are always welcome at the Italian table!!
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And Pooter, It sounds like we have the same look going on - got my wrap-arounds around my glasses and bandage too. I've got the do-rag for outdoors, and just wear the ace inside.
Yup. I don't wear a do-rag, but I definitely wear the ace bandage all the time and my new fancy glasses when I go outside. 8)
Brian
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Debbi -
Sounds like your in heaven now that you're about to go piccless. I can't say that I blame you. I was so happy for you I did the dance of joy (and managed not to fall down despite the twirling)! Since you are having company tomorrow and I'm not quite sure what our plans are for the day, would Monday be better? If you're available, it would probably be better for me. Let me know when You'll be home and I'll give you a call then, if you think you'll be up to it. Otherwise, it can wait.
Hope the rest of your weekend is great!
Wendy
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Debbi--
That dinner sounds fabulous! (If not exactly fast food... ;) )
Hope you enjoy the company, and also the freedom to opt out of the commotion, guilt-free, when you need to!
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Debbi - menu sounds great. See ya at 1. I'll bring the pasta. My Italian family wouldn't have it any other way - you make it an eat it even if you don't want to! :D You know those Italians - "Mangia!".
I'm so glad Monday will be "Freedom from PICC's" day for you! I'd hate to see your water bill after that LONG shower you're going to enjoy! It'll be worth every penny though!
Lori
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Hi Debbi -
Just thought I'd drop you a quick note to say "H!" Hope you enjoy your Italian Feat today with our in-laws. I have to go with Carrie and say it's nice you can opt out with a legitimate excuse if you need to nap. I know since I've lost so much of my hearing noisy situations bother me too. It's hard to follow conversations and just gets annoying and frustrating. Don't lknow what I'm doing today. Sam went out with a friend and her mother to spend some of the loot she got for her birthday (yesterday's party was a huge success from all points of view) Jen and Rob just went out with one of her friends. I didn't feel like going and much to my surprise, he didn't insist (he usually doesn't like to go anywhere without me if one the girl's friends are involved. I haven't walked yet today as I decided to sleep in for once and didn't get up until 10:30 - late for me, or anyone I guess. Hope you have a great day!
Wendy
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Debbi,
Sunday dinner and NO PASTA.......why didn't I think of that!! My in-laws would never darken my door step if I did that. Oh yeah, several years ago on Thanksgiving I didn't serve the pies quick enough so my in-laws left in a huff. You see my cousin and I where having too much of a good time washing dishes. ??? Get this, my in-laws never celebrate "TANKS DAY" until I married Louie.
Hope your dinner went well and I hope you got some rest. Yeah I know all about the noise level ;)
Anne Marie
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Anne Marie - come on now - pie comes before washing dishes! What's wrong with you??? :D
Oh well, at least after they left in a huff, there was more pie for you, right? Or did they take theirs to go?
Lori
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Lori,
Nope they left without the pie!!! Unfortunately once they got home, they called and spoke to my husband.............gosh he got an ear full, about me being selfish and inconsiderate. According to his father, I should have served the pie before I did the dishes. I don't know about your house but in my house I like to clean up before I serve the coffee and pie. It gives me a chance to sit down and enjoy also! That's was just one of many memorable battles. :'(
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Serving pie, washing dishes, in-laws leaving in a huff ::) All I can say is "Thank God I'm single" :D
I feel for you Anne Marie.
Debbi -
did everything go as planned today? Are you picc-less? I certainly hope so!
Jan
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I'm going to comment on the pie tomorrow...
For today, the BIG news is that I am picc-less and suture-less and I am one HAPPY girl!!! Dr. Roland took a handfull of spat-sutures out and then deftly removed the picc line (I felt nothing - and didn't even take the xanax!) Still have to cover the picc incision for a couple of days, but that can be done with a water-proof (oversized) bandage, NOT Glad Press 'n' Seal. Wahoo!!! It is indescribably nice not to have an iv line dangling from my arm pit anymore.
Dr. R thinks I should get my blink back by the time he sees me next month, but says tears willl come later. I'll take a blink - heck, I'll take just about anything.
Willie and I stayed in the city for dinner with my friend Kura - it was lots of fun, but I am totally exhausted now and going to head to bed.
More tomorow...
Debbi - yawn
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Congratulations, Debbi ;D You've had a big day ;)
Get some rest.
Jan
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Woo Woo! Congrats on being PICCless and suture-less! I *know* that must feel better! So, since you're putting your head down, does that mean no celebratory shower? When does that happen!?!? I'm glad ya stuck around for dinner with Willie and your friend. ANY time getting out is fun! I haven't been out much, but I started back to work part time and that RAWKS! That's great that he thinks your blink will be back within a month, too! Happy day!
Congrats again!
Brian
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Debbi -
Congratulations on being picless and stitchless!!! Brave of you to not take the Xanax (spelling?) after all. Dr. Roland sounds really nice and I am so thrilled to hear your other good news about your blink coming back by next month!!! I am just curious, did you ask him about the nerve responsible for lubricating the eye? I was just wondering if I remembered that right. If you didn't ask, I can go back and look at my old e-mails and see what Dr. Choe said about that. In the meantime, I am so happy for you. You must be ecstatic!
Wendy
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Thank goodness, Debbi! So glad you finally got that pic thing OUT. Enjoy your freedom!
Cindy
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From one PICC-less sister to another -- WHOO-HOO!!!! ;D
K
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It is indescribably nice not to have an iv line dangling from my arm pit anymore.
Oh, come on, you are going to think back to these days next year some time with such fond memories. :D
This sounds like a corner getting turned to me. You have some eye-foo to get through yet, but you are almost there now. It's the home stretch!
Steve
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Friends-
I am all still a-tingle and a-twitter from this morning's shower! The only concession I had to make was a small tegraderm patch over the incisoin from the picc. I stood in the shower and just let the water flow all over my arm!!!! Even those of you who have missed the picc experience can understand the joy of taking a shower after the bonnett experience - this was similar to that first time you got to let water run over your head. Honestly, this is the first time that part of my arm has seen water in a month!! I'm sure the dead skin cells couldn't WAIT to leave the mother ship!
The visit with Dr. Roland was, as always, encouraging. He said he felt that I was close to getting my blink back (no guarantees, of course). I see him again in four weeks so he'll assess everything again then. As usual, I went in with a list of questions - and realized on the way home that I forgot a few. Typical. He assured me again that the nerve monitoring during and after surgery showed a healthy nerve. However, he did say that sometimes the nerve needs some help recovering (nerve stimulation, nerve graft) but that we are nowhere near talking about those things yet.
Dr. Roland is only covered by my insurance for 90 days after the surgery, which means that my insurance (in theory) doesn't cover him after the end of July. I did ask him about this, since he is the one I want to follow me through the facial palsy. He told me not to worry, that we'd work something out. That's a relief. This is one of those aspects of insurance that can drive you crazy - Dr. Golfinos is covered, but Dr. Roland wasn't - but the insurance co (Aetna) accepted the petition by Golfinos to cover them as a surgical team for the surgery and immediate post op care. Who new I'd end up wit a crooked face? Ah well. One step at a time.
Steve, YES, this feels like a huge corner turned in my recovery. At times during the last month it has felt as if I was just stalled in neutral. Gettig the PICC line out was a giant symbolic step.
I talked to Dr. Louie last night too - he wants to see me the week of July 2 to draw more blood and check all levels. If things look good at that point, I am officially out of the woods! So, keeping a few fingers and toes crossed until then will be much appreciated.
Thanks to all for cheering me on thorugh this last chapter - hopefully it will all be smooth sailing from here!
Debbi - picc-less in New Jersey ;D ;D ;D ;D
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Debbi,
I'm so glad you finally got the PICC removed. I must have felt great to finally take a nice long shower and not have to worry about getting the PICC wet.
I know from reading this thread you've had some bumps in your road to recovery. I hope it's smooth sailing from now on.
Rosalie - keeping fingers and toes crossed for good news from Dr. Louie
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I think/hope that my road to recovery will now go along smoothly.
I've been a bit more tired the last two days, but think it may be the relief at having the picc line out and having that little bump in the road behind me. I was pretty tense during the days leading up to Monday's appointment, so am probably just catching up now. Whatever the case, I have had to take naps the last two days, which I haven't been doing much lately. Both yesterday and today I slept for over an hour each afternoon. What I HAVE learned in the last 8 weeks is not to fight it when I am tired - nothing to be gained from that!
I don't know if I mentioned this, but my NJ driver's license was set to expire at the end of this month. I have been dreading the whole experience of going to get it renewed - and had enormous trepidation about gettign the obligatory photo taken. Well, having waited until the proverbial last minute, I went today and guess what??? I was able to use the picture that is on my current license!!! (that would be the one with the two-sided smile...) What a total and unexpected surprise. This falls in the "Win" category!
So, off to see what elese is going on in the AN world.
Debbi - legal to drive for another 4 years...
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Debbi -
I noticed you have a new photo -- nice pic! Congratulations on successfully renewing your driver's license. Is your birthday sometime soon (I know NY State licenses expire on your birthday and assume they do in other states too)? Cheers to another four years of driving legally (and possibly "Happy Birthday!)
Wendy
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Thanks, Wendy! No, my birthday's not until end of January. But I'll be glad to celebrate anyway!
Yes, I decided it was time for a different picture - got bored with the other one. And, yes, that is a PRE-surgery picture (the full smile being something of the past at the moment).
Deb
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Bleh. I'm having one of THOSE days. I am still so darned tired - expected to be feeling much better now that I've been off the antibiotics for a week, but I am still dreadfully tired. And, it's EIGHT weeks post surgery!! Shouldn't I be running marathons by now or something???
And, can I moan for a moment about neck pain!? Sorry, you can't stop me - I'm on a roll... The side of my neck hurts like *heck* - I'm popping advil like candy, and using warm compresses, but it still hurts. Maybe I need a neck transplant...
Okay, and while I'm complaining, I'd like my smile back now, please. I have promised all the gods that if I can just have my smile back, I'll never complain again about not looking like Cindy Crawford.
And, can we talk blinking??? I'd like that back now, too, please! I'd like to be able to forget everything I've learned about Celluvisc, Refresh, Pura lube, etc.
Sorry guys - I just had to get that off my chest. I already feel better...
Debbi, what can I say?
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I'm with ya, Deb. I'm getting used to the facial issues, but could really use the blink. Still waiting for the Blinkeze eye weights and will let you know how that goes. How long did they tell you for facial recovery? I've been told 3-6 months, probably on the shorter end of it. I don't want to sound like a whiner in front of Kaybo and Nancy....but I am looking forward to blinking again, and maybe having clear vision out my left eye someday....In the meantime the dark M&Ms are helping. I'm definitely NOT going to be losing weight like so many here, because everything tastes GREAT! Oh well...
Tammy
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Debbi & Tammy
Complain and vent all you want, that's what we are here for.
I wish I had a magic wand and could wiggle my nose and make everyone better on this forum.
Your little witch........
Anne Marie
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Debbi:
You've maintained a great, positive attitude for two months while dealing with some unpleasant post-op complications, inconvenience and just plain frustration. You've earned the right to vent. I just hope and pray that the issues you're dealing with resolve sooner rather than later..but don't give in to depression.
After all, you're from New Jersey! Birthplace of Frank Sinatra, Jon Bon Jovi, General Norman Schwarzkopf and other folks who didn't give up and were ultimately successful. You will be too, Debbi. Just keep pushing and see the positives, as you usually do. And , between the venting and bad days, never lose your delightful sense of humor. We couldn't do without it. :)
Jim cheering Debbi on from the Nutmeg state, birthplace of Annie Leibovitz.
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We have a Nutmeg state? ??? Guess I should have paid attention in geography class, huh? Or read more license plates.
Jim, don't forget about Bruce Springsteen from Jersey too. And of course, the incredibly famous "Lori67".
Debbi - hope your blah day passes and doesn't return any time soon. 16 months after my surgery, I still occasionally have a blah day and feel the need to vent to anyone who will listen. Sometimes that's only my dog because everyone else knows enough to stay away from me on those days. :P
Lori
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Debbi & Tamara~
Complain all you want...I would give my left arm if you would BOTH get your smile and blink back ASAP!!! It's too late for me, but that doesn't mean I want anyone else to have to deal with this for a life-time!! However, it really isn't that bad when you know it is forever and you can either go on and live life to the fullest..or not...I really think is it a bit easier to know that it isn't going to get better than live in the limbo of "Is it going to get better today, in a month, or year?" Tomorrow is a new day - hopefully it will be better! I'm here if you need me!!
K
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Debbi - everyone has "difficult" days. This too shall pass! You are generally more positive on a bad day than I am on a good one, so I'm confident you'll get past this :)
Tamara - dark chocolate M&Ms are actually good for you, so don't sweat the small stuff ;)
Anne Marie - if you ever get a magic wand or a nose that wiggles and makes everyone better, let Lori & me know - we'll find a way to help you profit from that; minus a small commission for us of course ;) :D
K - you should win a special award for being an AN patient with an exemplary attitude 8)
Jim - how come Debbi has a "delightful" sense of humor and I'm just "droll" ? ;D Are you playing favorites, here? LOL
Lori - everyone knows that New Jersey is the Nutmeg State. I can't believe you didn't!!! And you call yourself a Jersey girl ::) SHEESHHHHH!
Jan
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I didn't know about the Nutmeg State... ???
K
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Me either, K :D
I just like to give Lori sh*t LOL
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Debbi and Tammy...I've been having one of those BLAH weeks. I hit three months post op and am still having facial issues including eye problems. My eye is still sewn 2/3 of the way shut, and I have dryness and no peripheral vision. I have a nice view of my nose and eyelashes and I've grown quite tired of the whole thing.
I went for a facial evaluation a few weeks ago and broke the record for low score (as in the worst anyone has every scored). I guess there's two ways to look at it. I'm in really big trouble, or I have no way to go but up.
I *celebrated* my three month anniversary of surgery, my one year anniversary since diagnosis along with a major wedding anniversary this past week. Instead of worrying about recovery, I should be on a nice vacation with my hubby. Things don't always go as we planned.
My sense of humor has kept me going. I'm not one who usually gets too down, but I must admit I had a nice self pity party earlier in the week.
I have regrouped by reading the forum, having a good laugh and relying on the kindness of friends to get me through this short phase. Debbi...my neck is still killing me too. I have a friend in massage school who has been coming over weekly to try and work on my neck. I'm not sure there is much hope for a quick cure and the way I cock my head to see (with my right eye) has left me with the posture of Marty Feldman in Young Frankenstein.
I have ordered a t-shirt to express myself (I'm not brave enough yet for a tattoo like Jan ;) ) and maybe stop strangers from chasing me down and staring at my eye (yes, it has happened). The t-shirt reads: "two more holes in my head and I'd be a bowling ball" ;D
Sorry to hijack your thread. Just wanted to let you know you are not alone.
The other Debbie (with an e)--usual sunny disposition in a full eclipse
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hi debbi and all...
I have not had access to the computer since Monday (i think... things are getting blurry) and since my surgery i have been unable to keep up with the "update" that grows and grows... I generally just look to the last page and see a bit of what's going on.
I see you have a new (and fabulous picture)... i think that's you? or i need to cover up the other eye (left one is patched). Anyone, somebody looks good to me! Forgive me....
It sounded like a few people were having rough days out there.... no blink or smile. Ah... misery loves company. Just another non blinking, non smiling girl hey wishing you guys better days ahead.
If it makes anyone feel better (but better not!) I still have double vision (would be nice to think I now have two Cali's but really just have the same babe, but she has 4 eyes now!!). I think this is the worst part (yes, worse than no blink, eye drops, etc). Not only cannot i not hear (ok, i think i might have 7.5% hearing... but that's a guess!) on the left, but i have to patch my poor ole left eye cuz otherwise everything is really screwed up. I can only think that all this will get better in good time, but at 26 days post surgery, I think I am "over" my symptoms. It's all kind of "old" already. I mean, you have surgery, you prepare for the worst, and i know there is much worse than where i am... but then you just start going....hmm... this kind sucks. ANYWAY... my search for a n"nice" eye patch contines. I am hoping to meet another (good this time) opthamologist soon... a referral from my surgeon. I saw those nice "blinkeze" thingees on the internet and am hoping to get one. Regardless, I still have the patch issues, but I think the weight would help. My smile is still broken, but when an eye (or in my case, both eyes together) don't work too well, the smile can weight.
ANYWAY, sorry to rant on Debbi's space. After reading a bit about your PICC thing (which from the sounds of it REALLY sucked), i know we all have our crosses to bear. SO thanks for sharing and those just hear with a sympathetic ear. GOOD ON YA Debbi for being such a brave sort and keeping up the good spirits.
Trish
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Debbi - I echo what others have said; you've EARNED the right to have "one those days"! This, too, shall pass. I know its hard to see now, but we both will look back and laugh about these days..Ok, maybe not laugh, but you get the idea. ;) Keep the faith, girl!
Tamara, oHIo and Trish - You all have had your issues. Before you know it, those things will clear up too. As someone else said, we all have our crosses to bear. We have our good days, and we have our bad days.
Each of you can rant and rave all you want. We all do from time to time. Lord knows I've ranted enough. ;)
Take care,
Brian
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Hi Debbi -
You have been so strong throughout your whole ordeal you are entitled to complain and moan once in a while -- in fact yo've done it so little you're entiltled to do a lot more. As for running marathons, maybe we should make one up for AN survivors, I can just see all of us running, and walking crookedly like a slightly inebreated crowd. Think they'd arrest us or being drunk and disorderly? I hope tomorrow's a better day!
Wendy
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Lori - everyone knows that New Jersey is the Nutmeg State.
Au contraire, the Nutmeg State would be Connecticut, home of Jim Scott, among others. From the Connecticut State Library web site:
"The sobriquet, the Nutmeg State, is applied to Connecticut because its early inhabitants had the reputation of being so ingenious and shrewd that they were able to make and sell wooden nutmegs."
Jim and his neighbors are a clever bunch... :D
Steve
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Steve:
Thanks for the clarification. I was going to offer it but I'm glad someone else did as my information might have been viewed as self-serving.
As a resident of the Northeast who was born and raised on Long Island, New York but has lived in Connecticut for almost 40 years,, I'm quite familiar with state nicknames in this part of the country. Connecticut being the 'Nutmeg State' (which I always thought was a rather lame designation). New York the 'Empire State' (clever) and of course, New Jersey being the 'Garden State' , a dubious designation for some areas of the state but accurate for others.
Jim
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To all my fellow "broken smiled", blinkless friends - well, better days are certainly coming! And, thank you to everyone for letting me vent. I usually view my glass as at least half-full, but I'll confess to having some "half-empty" days recently. Perhaps foolishly, I had envisioned recovery as being blip-free. Of course, waking up in recovery with a paralyzed face should have been my first hint that recovery might indeed have a few blips. Ah, well. I still have much to be grateful for.
It seems that there is quite a group of us with varying degrees of facial issues. It's good that we can compare notes and give each other support.
Debbie (oHIo), I am curious as to what kind of things they did for your facial evaluation, and how they score it? Would you mind sharing?
Tammy, I know you've got your Blinkeze coming (this week, I think?) so do let us know how those work.
Trish, hope you find a great eye patch - and please share!
Pooter, hope that headache is gone finally - I really don't envy you that whole complication.
Wendy, don't let all this scare you - I'm counting on you to have a trouble free surgery and recoery!
Jim and Steve - thanks for clearing up that Nutmeg State thing! (And thanks for the encouraging words - it always helps!)
Jan - New Jersey???? Everyone knows we are the Embroidery Capital of the World...
And, please, everyone, feel free to use this thread to vent! You're my friends and you're always welcome. I'd offer you a glass of wine, but Lorenze drank it...
Debbi, feeling better, still looking freaky
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Oops! Read Jim's post incorrectly. Didn't realize he said CT was the Nutmeg State - thought he was still expounding on NJ :D
Debbi -
the Embroidery Capital of the World? Never heard that one; who knew ???
Jan
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Yeah, who knew? Actually Northern NJ is the Embroidery Captial of the World - there is a big sign coming out of the LIncoln Tunnel that says so, so it must be true... Either that, or a bunch of crazy Italians got together, had too much to drink, and decided to make a banner and see if anyone would go for it. I can't imagine that there's a lot of competition for that title...
Debbi, not embroidering - now or ever!
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Maybe from Steve and his relatives...they might branch out into embroidery! ;D
K
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Ahh, excellent point, Kaybo ;D
I hear that Steve comes from a long line of "needleworkers" ;)
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Maybe Steve should move to NJ and start embroidering the knit hats. Or he can put up a sign that says "Knit Hat Capital of the World".
I always thought New Jersey was "The Big Hair State"?. As well as the Blueberry Capital of the World (Hammonton) and the largest producer of cranberries in the country (and you thought it was in New England??). Wow, all that and Jon Bon Jovi too.
Although my favorite has to be New Hampshire - "Live Free or Die". I don't know why I always kinda find that one funny.
Debbi - nothing like a good geography/history lesson to cheer you up on a bad day, huh?
Lori (stuck in TN - I won't tell you the motto I've come up with!)
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Lori (stuck in TN - I won't tell you the motto I've come up with!)
Okay, I am laughing my head off - and dying of curiosity! You'll have to PM me that one :D
Jan - in the Land of Lincoln
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1. Which state produces the most cranberries?
Wisconsin produces about half of the United States' annual crop of cranberries. Massachusetts produces about another third of the crop. The remaining U. S. cranberry crop comes mainly from New Jersey, Oregon, and Washington.
Sorry - can't let that one go uncontested...found the stats online...
Tammy, in Wisconsin, land of milk, cheese, and cranberries
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Yep, this has cheereed me right up! Tammy, thanks for staking the claim to the cranberry capital of the world!! Those crazy guys in Maine got NOTHIN' on Wisconsin! They should just give up on the their cranberry bog and go home - maybe they should go to NH and Live Free...
Lori, I actually think TX may still hold the Big Hair title... but I'll defer to Steve and Jim...
Heading out to the neighborhood pig roast in a few minutes (No, I'm not kidding - one of our neighbors does this every year.) Not sure how I'll do with pig smoke, but I'll give it a go.
BTW. question for the other posties - do you have pain in the joint of your jaw, near the ear? I seem to have a lot of pain there; but the massage therapist I saw yesterday showed me a pressure point there that I can massage for some relief. Seems to work, at least for short periods.
Debbi, sneaking up on the pig...
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Debbi...for my facial nerve eval, the therapist asked me to look straight forward and relax. He was checking for facial symmetry. Then he asked me to try to raise my eyebrows, smile, wrinkle up my nose, my mouth and try to close my eyes tight. I was able to partially pucker my lips. I don't know exactly how the total scoring was done. I think they gave me some bonus points for just showing up ;) Anyway, my total score was 15 out of 100. I believe they score everything on a 3 point system and multiply it x 5 for total score. It was hard to see the scoring sheet upside down and on my bad side, where my eye is stitched.
I would have asked more questions, but decided maybe I don't want to know right now. I have taken a temporary break from balance rehab because I am burnt out. I don't know that my balance is going to get a lot better until I can see out of both eyes. Although I still walk like I am drunk, especially when tired, I can walk unassisted and am pretty satisfied that I am where I am.
My facial exercises consist of gently rubbing the major facial muscles with my opposite hand, locating trigger points and pressing gently to relieve the spasms. This is supposed to prevent, or at least decrease synkinesis. I do these exercises 2-3 times per day. The PT only sees me once a month for facial rehab. I don't know that these exercises are actually supposed to make my face come back any quicker or they are just supposed to help with the side effects when my facial nerve starts working.
I had full facial nerve function immediately after surgery, but lost everything 24 hours later. I have noted some improvement (I was a 6/6 on the House-Brackman Scale) over the last few months. If I am wearing sunglasses to cover up my eye and I don't try to smile or talk, I look pretty normal. I went from initially being told by everyone they expected function to return "soon", then "a few weeks", and now the therapist mentioned it could take up to 2 years.
I believe the worst part of this whole journey is the uncertainty, the not knowing and second guessing what everything means.
oHIo...The Buckeye State
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Tamara -
Milk, cheese and cranberries? Mmmm.... sounds...interesting... :P
Oh well, I heard NJ on Food Network, but maybe they had a bumper crop in Wisconsin! Great, now all NJ has is that whole embroidery thing....and blueberries.
Anyway - Debbi - I have awful pain in my jaw, but not on the AN side. Which side is yours on? My dentist said it's TMJ made worse by the lack of muscle tone on the AN side and the good side doing more work. I sometimes get pain on the AN side, but not too bad. The dentist also wants to make me one of those night time bite guard things to take some pressure off that joint - apparently I clench my teeth at night. I can just imagine how stunning I'll look with globs of gel in my eye, a nightguard in my mouth and steroid cream in my hair from trying to get it on my BAHA abuttment. :D
Lori
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Lori -
Gotta get our 15 minutes of fame somehow! The only band out of Wisconsin that I can think of is the BoDeans, but you know that's an old group....
Deb-
Yes, I had the jaw pain. I figured it was just left from them dinking around inside my head. I'm 2 weeks postop and the jaw pain in pretty much gone. I've been using a vibrator massager on my whole left face side and jaw, and that seemed to help a lot.
oHIo -
I'm right with you on this one - my facial function was pretty good right after surgery. 24 hours later, it was pretty much gone. I am working on making slight movements with my mouth - I can feel the muscles moving a bit, though I don't think you can see it if you look at me. Do you have feeling in your face? I do, and figure that's a good sign at least. They told me 3-6 months for function to return, so I guess I'll be working on that timetable. You did have facial nerve monitoring during surgery too, right?
Tammy
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Hi All-
First here's the weekly update photo. I'm not brave enough to post this one on my blog. You can see the full effects of the pirate smile and the Marty Felman eye. But, Willie still says I'm the only woman for him!
http://i280.photobucket.com/albums/kk167/debifulco/629FacialProgress.jpg (http://i280.photobucket.com/albums/kk167/debifulco/629FacialProgress.jpg)
Tammy and Debbie - I think it must have been very disconcerting to wake up with facial movement and then lose it - at least I woke up with nothing, so nowhere to go but up.
Debbie, thanks for sharing your PT regimen, and the facial "test". I can pucker a little on the AN side - very little, but it's something. I am doing much of the same in terms of therapy- got a handy little device called a Z-Vibe that I use to massage my face and inside my cheeck, lips. It's the size of a ballpoint pen, so I can carry it anywhere. I also try to blink, crinkle my nose, raise my eyebrows and move my lips multiple times a day. My neurotologist said to try to isolate the muscle movements as much as possible - huh? I can't even move anything other than that one brave little muscle under my eye!! ???
If anyone was watching while I attempt facial exercises, they'd die laughing, - or run screaming form the room...
As for time to "recover" - they initially told me about 5 months. What I have come to understand, though, is that this is not an exacty science. The neurotologist still feels confident that I'll have a full - or nearly so - recovery, based on the facial nerve monitoring. However, he also said that if it wasn't resolved in 12 months, we'd look at other options. I am hoping for the best, and prepared for the worst.
Lori, I also have TMJ. sp wear the night guard. AT first, I couldn't wear it because my mouth wouldn's stay closed on the AN side, but am now able to wear it. Like you, I'm a clencher. And you are right, it's quite a site. However, it does help the TMJ immensely. This pain is higher up, right where the jaw bone connects to the skull, I guess, near the top part of my ear on the face side. I can actually feel the joint if I press in that area and have started massaging that joint to try to relieve the pain.
This comparison of facial symptoms, treatments, and progress is very helpful - thanks for jumping in and hope you'll stick around and add more...
Debbi
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Hi Debbi -
Hope you are feeling better and having a better day. I too am counting on my self to be the exception and have a reamarkably perfect recovery (I hope you realize I'm being exceptionally optimistic for the moment -- but hey, you never know -- it could happen!!) When I spoke to Dr. Choe a few days ago he said he felt the prognosis for my facial nerve was very good, so if he's that optimistic, how can I not be? Optimism is catching!! I know I've had my ups and downs lately but for now I'm going through an up period. Sometimes the things I read here do scare me a little, knowing they could happen to me as well. I am hoping for the best and trying to be prepared for the worst. That's the best I can do. In the meantime, I'm wishing you all the best.
Wendy
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Wendy, I will soon be an ANer for 7 yrs and have come across many other ANers from here and one other AN site. I have been to the last 3 symposiums and have met so many ANers. So many do very well with only minimal long term problems. Usually the SSD and maybe some slightly off balance problems only under certain conditions. Many soon depart from here and are back to their nornal life with just some slight adjustments. Many do not have facial issues. There are several of us who remain here and may seem like everyone ends up with some of our problems,but many do not. Those of us who are NF2 may really seem scary when you hear of having multiple surgeries. The time before surgery is so very scary for everyone. I personally am pro surgery. I have said this several times but don't over do right after surgery as you will get back to normal in good time and it is easy to overdo to prove to yourself that you can be normal again but end up too tired. That was my find after my first surgery.
I do think of all of those who are having treatment but do not post as often as some to wish them well. Cheryl R
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Hi Debbi,
where did you get the Z vibe from, and does it help? I am 2 years post op and still have good and bad days. Good liuck with your recovery you look great.
Lainie.
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Cheryl,
Thanks for your post. Sometimes it does seem that virtually everyone has facial issues and when I speak to my doctor he always reassures me that this is not the case. I have sometimes wondered if he was downplaying this issue, but he's always been so straightforward with me I didn't really think so. It's good to know from someone who's been there that this is true. I was only half kidding about hoping for the perfect outcome, but I'll settle for "good". I've read many of your posts and know you've had a bad time of it with your AN issues but didn't realize you had your first surgery 7 yeras ago. You, like Debbi and many others have remained so positive in spite of what you've gone through and are continuing to go througfh are a real inspiration. I hope that I have and will continue to help others through the AN experience because that's really why I think eveyrone is here to help, commiserate, support and be supported. There's not much that is more worthwhile than that. If ican can get a good laugh or give someone else a good laugh along the way, so much the better!
Wishing you all good things,
Wendy
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Wendy,
I will soon be an ANer for 7 yrs and have come across many other ANers from here and one other AN site. I have been to the last 3 symposiums and have met so many ANers. So many do very well with only minimal long term problems. Usually the SSD and maybe some slightly off balance problems only under certain conditions. Many soon depart from here and are back to their normal life with just some slight adjustments. Many do not have facial issues. There are several of us who remain here and may seem like everyone ends up with some of our problems,but many do not. Those of us who are NF2 may really seem scary when you hear of having multiple surgeries. The time before surgery is so very scary for everyone. I personally am pro surgery. I have said this several times but don't over do right after surgery as you will get back to normal in good time and it is easy to overdo to prove to yourself that you can be normal again but end up too tired. That was my find after my first surgery. I do think of all of those who are having treatment but do not post as often as some, to wish them well.
Cheryl R
Cheryl:
Thanks for your message and for being a dedicated member of the 'AN community'. You may not post a lot but when you do, the post is usually informative.
I'm one of those ANers you referenced that had a good surgical (and radiation) outcome. I've stayed an active member (and now, a moderator) here because I hoped to use my experience to encourage others, especially the newly diagnosed. I also try to encourage those experiencing post-op difficulties. You're right Cheryl, not every AN patient has post-op or post-radiation complications - some recover fairly quickly, as I did. We need to emphasize that because this is an AN support site and it's only natural that those who don't need much support will drift away once they are back to normal, following successful surgery or radiation treatment. I considered doing that, but changed my mind when I saw how much help I could be to other AN patients and decided that spending whatever internet time I had here, instead of elsewhere, was a good use of that time.
Debbi: Hang in there and keep fighting for normalcy. You'll persevere and win, I'm certain. Sorry to hijack your thread for a minute but I wanted to respond to Cheryl's cogent comments. Now, back to our regularly scheduled thread.
Jim
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No one has to apologize for posting here - I welcome the dialoge and find it all helpful and encouraging - so thank you to everyone!
Cheryl, you are always so encouraging to everyone here, and you've certainly been a wonderful friend to me! Wendy, you are such a trooper and I just have a really GOOD feeling about your surgery! Jim, I always love reading your posts - so thoughtful and well written, and always so worth reading!
Lainie, the Z-Vibe ... I got it from an online store [url][http://www.superduperinc.com/url] This was recommended by the facial therapist I saw, along with something called a NUK, which I also ordered from superduperinc. I did ask my neurotologist about it and he wasn't familiar with it, but felt that the massaging action would be helpful.
BTW, not sure if it is a false alarm, but Willie and I think we saw a small muscle twitch next to the corner of my mouth. We had to really study it to make sure we were actually seeing something (heck, I can't tell with my blurry vision!) but pretty sure I have something teeny, tiny going on! I'm trying not to get over-excited, but ... ;D
Debbi
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Debbi~
So glad for the movement that you guys saw - I still remember driving down a highway in Austin looking in the mirror (Dave was actually driving) when I got my 1st bit of movement after my 12/7!
K
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Debbi -
How great that you think or did see some movement by your mouth! I know you don't want to get too excited, so I will get excited for you! I'mhoping and praying you two are right and you get your smile back even soner than the doc predicted.
Wishing you all good things!
Wendy
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Hi Debbi,
Thank you for the information. I am going to try it.
Lainie.
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To all of you, thank you for your support. I do have my up and down days. My family really doesn't get it that I appear normal but after 3 tumors and 4 surgeries I do not feel normal and never will completely. NF2 is not a fun condition to have even though I am better off than many NF2ers. They don't seem to have a clue that now having had surgery on both sides makes a difference in how one is. I did end up much better than it was even expected to be and I am sure my body was already compensating.
My husband doesn't understand why I like this site and just being on the computer so much. He does make occ comments. However the tv is on the minute he is in the house and thats no problem with him!
Life does go on and we all do the best we can, One of these days I will get a picture on too when my daughter is here and can do it for me.
Cheryl R
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Cheryl,
Even though you are better off than many NF@ers, it doesn't diminish what you have gone through and how you feel. It's great that you have such a positive attitude though. As for your husband not understanding, I think that is not uncommon, in fact, it seems that many people just don't get what any of us ae going through because we do look so normal or close to it. If you look good on the outside it's hard for them to relate to what's going on on the inside, or that is certainly my perception. Hang in there, you are entitled to bad days now and again, but I hope you have more good days than bad. Thank you again.
Wendy
Hi Debbi -
Any new signs of movement? I'm crossing everything crossable for you. Hope y ou have a great day! I'll check back later to see if you've posted.
Wendy
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Cheryl - you know you are one of my ultimate heroes! And, I know some NF2ers have it worse, but I am still not sure how anyone deals with multiple AN diagnosis with as much grace and dignity as you.
Wendy, about the facial movement - it is very small (think teeny) and as I look at it, I think it is actually my lower cheek moving. That would make sense in terms of how Dr. Roland explained the nerve healing process. The shortest "arm" of the facial nerve is the one that is in the cheek; the longest sections are the mouth and eye. So, it woudl make sense that I would start to get some small movement back in my cheek first. When I was in the hospital the second time, I got that little muscle right under my eye, in my upper cheek back. That was a little over a month ago. Whatever it is, though, it's still exciting.
Meanwhile, the dreaded pirate smile is still with me... :P And, as Debbie oHIo so adeptly put it, the Marty Felman eye. ;D
Debbi
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If one needs multiple surgeries, you don't get a choice and just deal with it. That's all you can do. I think being a nurse has been a help to me. I know of some who have been thru much worse conditions than what I have been thru. I knew in time that I would have a normalish life even if for a while we are recovering. I don't like being retired now but I don't think I could handle the extreme busyness that we went thru where I worked. The big wigs there don't really realize what patient care is like. ( That's another whole story)
Jeff is the one to me who has been thru so much and done so well. Tony also has been thru many surgeries and came thru well.
I always hope that others do not think I mention my NF2 as a way to prove I have been worse off than one who just has one surgery. That is not my intent but to show we can survive and have knowledge about this whole experience. Some larger tumor ANers have been thru a great deal more and recover in time.
Cheryl R
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Debbi--hope those small movements in your cheek get bigger every day. Down with the Marty Feldman eye, up with those proverbial cheek "apples'' just crying out for a perfect application of blush!
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"Debbi--hope those small movements in your cheek get bigger every day. Down with the Marty Feldman eye, up with those proverbial cheek "apples'' just crying out for a perfect application of blush!"
I burned my wrist w/scalding watrt, but even that can't keep me away. I guess I am addicted! The above quoe is from Carrie but this is the best I could do with my left hand. Hope you are well and had a good day
.Wendy
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HI Debbi...
Just checking in to see how you are doing. Glad to find you are finding some things to get excited about. Hoping for more and bigger twiches for you everyday!
Trish
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oHIo -
I'm right with you on this one - my facial function was pretty good right after surgery. 24 hours later, it was pretty much gone. I am working on making slight movements with my mouth - I can feel the muscles moving a bit, though I don't think you can see it if you look at me. Do you have feeling in your face? I do, and figure that's a good sign at least. They told me 3-6 months for function to return, so I guess I'll be working on that timetable. You did have facial nerve monitoring during surgery too, right?
Tammy
Tammy...yes, I had facial nerve monitoring during surgery. I have full feeling in my face. Even a few days after surgery, I had muscle spasms in my face if I touch over my eye, or my cheek. No synkenesis, just spasms that draw up my lip or eyebrow. I don't know whether that is a good thing or bad thing, but it helps to accentuate my Marty Feldman eye ;)
I also had really severe pain in my cheek, under my ear where my jawbones meet at around 8 weeks post op. For 4 days, I wanted to cry it hurt so bad. I saw the doctor who thought it was TMJ, but it disappeared suddenly, right after seeing the doctor (go figure). My theory is that it was nerve pain because TMJ normally just doesn't suddenly stop hurting. I had taken pain medication and it didn't help, so something was up.
I also had an intracranial bleed at the beginning and end of my surgery, which was repaired, but I wonder if that didn't contribute to my slower recovery along with the spinal fluid leak.
While I complain at times, I believe I am doing well and have had a good outcome. I went back to work at 9 weeks (Memorial Day week) working long days (10-12 hours) and feel pretty good. Other than my eye and uncooperative face, I pretty much feel back to normal. My friends would tell you I was never normal. ;D Even the eye and face issues have not slowed me down.
Debbi...I hope the twitches, no matter how tiny, continue.
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Hi Debbi -
Just checking in to say I hope all is well. I'm not sure I'll get to post again today as we are leaving on vacation later today and I'll be really busy for the rest of the day. I hope your cheek twitches quickly turn into real movement and your face is back to normal by the time I get back home. Take care and I'll check in in about two weeks, if not sooner.
Wendy
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Yep, I definitely have something going on in my lower cheek. I would estimate the movement at the corner of my mouth at about 1/8 of an inch (at best) - you really have to look hard to see it - but it's definitely there!
Debbie, I know what you mean about that weird facial pain - I've had problems with that off and on for about 3 weeks. It comes on suddenly and hurts like the d***ens. I've had TMJ (still wear a night guard) and this isn't it. Seems to be getting better, though. I found that percoset actually works pretty well when it flairs up, you just can't take it during the day or at any other time when coherence is needed! ;D
Wendy, I hope you have an AWESOME and relaxing vacation! Try not to dwell too much on the upcoming surgery.
I wonder if the rest of the "marty feldman club" gets this - when I get tired, my speech starts to slur a bit. It is mostly the Ps and Bs, and I know the slurring is because my mouth is getting lazy. Frustrating, though. Have any of the rest of you experienced this?
Debbi - occasionally slurring my b's and p's
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Debbi~
YES! I STILL get the speech problems when I am really tired. We moved back to the same city as my mom when I was about 4 years out, but when I still lived in Austin and would talk with my mom on the phone, she said she could always tell how tired I was by my speech!! The more tired I am. the harder it is to make words come out right. I bet yours will get all better though since you are getting movement back!! ;)
K
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Kay, did you ever try tongue twisters? The therapist I saw for my face suggested them as a way to strenthen my speech. I have been doing Betty's bitter batter and Peter Piper - cracks my husband up. I think it may help, though. At the very least, it keeps me amused.. :D
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Deb~
I didn't do them conscieously, but always do them with the girlies!! ;)
K
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Deb~
I actually have some "adult" ones that are pretty funny - I could PM them to you to surprise Willie!!
K
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Heh..why did the pied piper's peppered p.... well, you know...pop in my head all of a sudden? Heh
Brian
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Kay, yes, send 'em over! Any maybe you could CC Pooter, too - seems like he could use some laughs right now...
It's really boring in the hospital, isn't it, Brian? I was so glad to have my laptop when I was in for my second stay.
Debbi, with bitter batter, but hoping for something better...
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I see Brian is feeling a little better, huh? :D
Debbi - I get the slurred, sleepy speech (that's almost like a tongue-twister) when I get tired too. That's when James looks at me and says "time to go to bed".
Lori
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heh..the hospital is boring, so thanks for the tongue twisters. I especiaaly like the "debbi likes dunkin doghnuts down by the dock" and "lori leaves the line with slurring and sllepy speech, but we dunno if its laz"s wine" ones.. ;)
Brian :)
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sorry i am a little inconsistent and out of the loop these days...
Pooter what are ya in for?? Glad to hear at least you are getting some improvement on the face.
I didn't realize i had "speech problems" tell i read this and tried to do peter piper. whoa. i am sure no one would even recognize what follows peter piper! oh well... !
Trish
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Trish, probably best that no one recognizes what you're saying if you're saying Brian's version! :D
Lori
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Hahaha... Yeah, its best that nobody knows what you're TRYING to say so that they can't say ya did bad! ;)
Trish: I'm back in for a "probable infection". Long story short (if ya want the long version you will have to catch up on my thread under "AN Community"), I started not feeling good, which led to fever, wihich led to a spinal tap which led me to be admitted again; I'm still here and likely won't get out despite me feeling better until Monday or so because of the holiday weekend but they aren't as concerned about meningitis as they were.. That's the shortened version. :)
Lori sells seashells down by the sea shore. Or something like that. ;)
Brian
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Lori sells seashells down by the sea shore. Or something like that. ;)
Lori -
you're selling seashells now? What? Is the garage surgery business slow these days? :D
Jan
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Jan~
You know Lori - she has to be able to make a buck where ever she goes and since she is heading to the beach for a few days!! ;D
K
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Yea, heading there myself - guess I'll have to look for shells also. Maybe it will help finance my vacation ;)
Wish you could meet us there, Kaybo ;D
Jan
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I think she was headed for the gararage and kept turning towards the seashore. So, the story goes anyhow. Perhaps it was Laz and the wine that did her in. ???
Brian - one dose of daily meds in, 100 to go.. bleh
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Seriously? 100 to go? :(
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Hey Brian- can't beleive you're gonna be in the "big house" all weekend - that sucks (oh, can I say that here???) How about if I have a beer for you, or a glass of really nice wine?? You know, I got out of the hospital (dragging my picc line) the Friday of Memorial Day weekend - we need to stop this holiday weekend-back-in-the-hospital trend we've got going... Maybe Jenni can bring the kids and you can have a picnic in the hospital ... they probably won't let you fire up the grill, but maybe you can find a bunson burner somewhere ... Isn't it great that you can get internet at the hospital, though? It was the only thing that saved me from complete and total death by boredom during my second trip. hang in there, my friend.
I think Lori's upcoming beach vacation has distracted her from the serious business of getting this garage surgery thing off the ground. :o jan, aren't you supposed to be surpervising this endeavor????
Debbi, having a rocking 4th (okay, maybe wobbling is a better word...)
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Jan:
I think Brian was using a figure of speech. He probably feels like he takes 100 pills a day...but you knew that. ;)
As for the inability to pronounce tongue twisters: Even though my diction is good, that exercise was always difficult but fortunately, I don't have much occasion to recite those silly phrases in public so my weakness in that area has remained a secret...until now.
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It feels like they come in and hook me up for IV meds 100 times. as Jim said, but it's more like 6 or 8 times a day. They've come in to do twice today already. Yea!
Yeah, being in here alll weekend does suck but Jenni and the kids are supposed to come visit today sometime. I think the nurses would quickly douse the flames of any appliance and quickly steal my beer. Oh well. Part of the "exicitement" yesterday was them taking a cig away from someone on the floor who just had surgery and wanted to light up. Go figure, at a non-smoking campus and after brain surgery too!
Yet another Jim mystery. Who are you, again? ;)
Brian
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Jan~
I wish I could be there with you guys too - I think we could have some SERIOUS laughs!! >:(
K
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that sucks (oh, can I say that here???)
Debbi-
Guess you can, or else we'd be looking at something like this "s****" :D
And the "big house" ? - sounds like Brian's in jail :D
Actually, Jim, I didn't realize that Brian was just kidding. I read his post about 2 minutes before walking out the door for the annual parade and thought he was totally serious :o Guess I shouldn't have taken him literally ::)
Brian -
thank God I misinterpreted your post. 100 times would have been way too much!
Jan
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Well, in anticipation of the garage surgery business really picking up, I figured I should take a beach vacation and sell some sea shells. Or sleep in some sand in the sun. Or sip some suds while seeing the seagulls soaring.
Hey, maybe Kay can set up a grill in the hospital parking lot and deliver burgers to Brian and the rest of the patients! Could be a big money maker!
Lori
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Too bad I was in Houston for Memorial Day instead of this weekend!! >:( I need to make some money somehow...
K
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If I was clever enough to insert a picture of a burger or a grill or something, I'd do it - unfortunately, I can't for the life of me figure out how to embed a picture in a post...
So, Brian, just use your imagination and imagine that I'm sending you a burger hot off the grill ... turkey, veggie, or beef? Cheese with that? Nice cold beer? Oops, darn that nurse, she just snatched the beer right out of my hand! :D
Hey, Brian, while you're stuck in the big house, maybe you can sneak out some of those nifty gloves - gonna need them for the Garage Surgery biz ... Keep your eyes open for any interesting tools, too - you've got Jenni so don't use that IV thing as an excuse. Get busy, man!
Okay, enough silliness for now - check back later. Meanwhile, Brian, try to have some kind of fun while you're there.
Debbi
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If I was clever enough to insert a picture of a burger or a grill or something, I'd do it - unfortunately, I can't for the life of me figure out how to embed a picture in a post...
Debbi -
every forumite whose been around here long enough should know how to do that!
I'll PM you the instructions I sent JulieW last night.
We need some pics on this forum - other than BAHAs, scars, bonnets, etc. ;D
Jan
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Jan~
Send them on this way too -- I have NO CLUE!!!
??? K ???
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Will do :)
Jan
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Yes, gloves will be helpful. We can blow them up like balloons and make them look like turkeys.
Oh, I guess we could wear them too - cleanliness is almost as important as surgical glove turkeys.
Tell Jenni to wear a big coat with pockets when she comes to pick you up - just think of the stuff she can "borrow"!
Lori
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Okay, love the turkey idea - what better use for all the surgical gloves Pooter is going to supply...
Jan, thank you SO much for sending instructions on how to post a pciture. I am going to try it now with last week's progresss photo ...
(http://i280.photobucket.com/albums/kk167/debifulco/629FacialProgress-1.jpg)
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Debbi -
I think you're coming along great! You look fantastic! Trust me - much better than I look at almost 17 months!
Glad you liked the turkey idea! Can you tell I used to work in pediatrics? I can also make a blown up glove look like one of the doctors I used to work with - he had kinda spiky blonde hair. The kids always thought that was funny! If I ever decide not to be a nurse anymore, I suppose I could become a clown and make balloon animals. :D
Lori
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...or glove animals... ;D
K
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Lori -
you crack me up :D and I really like the idea of Jenni helping us with our garage surgical business. Coat with big pockets :D LOL
Debbi -
glad you figured out the picture thing. Looks like you figured out how to size the picture also - I forgot to tell JulieW how to do that. As Lori said, you're looking good ;D
Jan
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Okey dokey - so it's Sunday morning and I've read the paper and now I'm bored. So, I am going to attempt to post a couple of pictures from right after my surgery, when I was in the hospital. Let's see if this works...
Day One in the Recovery Room - what a face! (http://i280.photobucket.com/albums/kk167/debifulco/51Onedaypostop-1.jpg)
Debbi's first walk in the hospital, with Willie and an eye patch! (http://i280.photobucket.com/albums/kk167/debifulco/52Debsfirstwalk.jpg)
The hit of the hospital - my Freudian Slippers! (http://i280.photobucket.com/albums/kk167/debifulco/52Debsfirstwalk1.jpg)
Okay, I am obviously still having some challenges with the resizing thing. I'll keep working on it.
Jan, you are right, there aren't enough pictures on this forum!! Let's see an updated BAHA picture, okay? And, Pooter, how about something??
I'll post a pic of my head scar later - see what it looks like 2 months post...
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You are SO much braver than I am Debbi - had anyone even THOUGHT of approaching me with a camera, I think the look from my good eye alone would have withered them....
I saw your latest photo - looking good!!
Tammy
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Hey Tammy-
I actually told my family that I wanted day-by-day pictures while I was in the hospital. I kinda thought that at some point, I'd want to look back on this and see progress. Fortuitous decsion as it turns out, since my face got messed up.
I actually have a picture in the recovery room just as i was coming awake - terrifying! My dad managed to get off one photo in the Recovery before the nurses swooped down on him like avenging angels. Go Dad!!
When I get discouraged, I do go back and look at the early pictures so that I can get a clear idea of how far I've actually come. My own strange brand of therapy, I guess. I think most people would agree with you, though, Tammy!
Cheers!
Debbi
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Debbi:
Thanks for the photos.
You look pretty much like most AN patients immediately after surgery,while still in the hospital. I doubt any of us looked much different ... except for the slippers.
The fact that you specifically requested your family take photos of you in the hospital as a reference point you could use during your recovery was quite clever of you, Debbi. Posting these photos is admirable and once again demonstrates that if an AN patient can keep a sense of humor and not take yourself too seriously, even an elongated recovery period with some obstacles along the way can be met with poise and grace backed by a determination to surmount the obstacles and return to normalcy.
Jim
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I doubt any of us looked much different ... except for the slippers.
Jim -
are you trying to tell us you don't have slippers like this? :D
Jan
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Hi Brian...
sorry to hear of this set back but glad to find you good spirits. i will check the long version for sure...
we still have house guests and of course i have Cali (who has started walking and is full steam ahead) so i have only so much time to check this site (and only when i have access to hubbie's laptop).
Debbi...
brave girl to post pics. i checked your site and you look great and glad to hear those twitches are the real deal. an inch a month eh?! how long is the facial nerve then?? I dont think i have any movement yet, but i am so distracted with my double vision, i hardly notice the paralysis!
happy belated July 4 to all my American friends!
Trish
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Ah, the Freudian Slippers - a gift from a therapist friend, and what a lot of laughs I got from those slippers. Little did I know, however, that I wouldn't be able to look down at them myself (looking straight down resulting in falling straight down for those first wobbly days... :D) The nurses and doctors all cracked up when they saw me tottering around in my Freudians - not sure if they were laughing at me or the slippers, but who cares?
Trish - the way the facial nerve was explained to me is that it comes out by the vestibular nerve and then branches out into all kinds of little nerve "legs" that travel to various parts of the face. Wouldn't you know it - the mouth and eye nerves "legs" are the longest and therefore the slowest to come back. Murphy's Law.
I've been using Occlusor patches/bandaids at night to keep my eye protected for the last few months - worked great. Until the last week when it apears that I have developed some sort of sensitivty to them. My right cheek just below my eye got all puffy and red and it looks like I have an enormous bag under that eye. Horrors! No woman wants that - espeically not at my age! So, I bought a regular "pirate" eye patch this weekend, but found it very uncomfortable to sleep in. Last night, I rigged up one of those little "blackout" masks that people wear on planes. I lined the right side with Glad Press 'n' Seal (Lori, yet another use for this, and an addition the Garage Surgery gift shop?) and it worked like a charm! Of course, I applied about a gallon of puralube to my eye, as per ususal.
Eye care has become my obsession - not to mention a part time job...
Debbi, de-puffing my cheek
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Debbi -
maybe you should check out the eye-patch resources that Steve recommended to Trish http://anausa.org/forum/index.php?topic=6745.msg67988#msg67988
I thought Eye Patch Heaven was very impressive - trendy, too ;)
Jan
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Hi Debbi -
We're having a lazy day down here in sunny Florida, everyone is tired -- so while everyone else is taking naps, in the pool or just vegging out, I thought I'd catch up. Jan is right as usual (no wonter you got into Notre Dame!) the eye patch resource Steve mentioned, (I think it's called Eye Patch Heaven) is quite chic! You should check it out. You are finding so many uses for Glad's Press ,n Seal you should write them. Maybe they'll post you ideas somewhere! Glad to hear you are doing well except for the bandaid probllem and eye issues.
Wendy
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Debbi - those slippers are hilarious! :D
Always a good idea to keep the medical staff entertained! I had one of those "Life is Good" t-shirts that had a guy doing yoga on it and just said "Balance" under it. I figured since my balance was going to be off, I'd wear it in the hospital. The PT's got a laugh out of it!
Jan, you'll have to give me the photo lessons too. Not that I have any to post, but I might be able to blackmail you with some beach pictures from next week! :D I'm going to use this AN to make my first million somehow!
Lori
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Jan, you'll have to give me the photo lessons too. Not that I have any to post, but I might be able to blackmail you with some beach pictures from next week! :D I'm going to use this AN to make my first million somehow!
Lori -
you might make your first million by signing a contract with me that swears you won't post any beach pictures unless my children are standing directly in front of me :D I don't have the million yet, but I'm working on it ;)
Wendy -
clarification. I'm not an alumnae of The University of Notre Dame, but of Saint Mary's College, Notre Dame. Saint Mary's is actually Notre Dame's sister school. Back when Notre Dame was strictly for males, Saint Mary's was a woman's only option. Once Notre Dame went coed in the late 70's it became the next best choice for women :)
Jan
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I'm not an alumnae of The University of Notre Dame, but of Saint Mary's College, Notre Dame. Saint Mary's is actually Notre Dame's sister school. Back when Notre Dame was strictly for males, Saint Mary's was a woman's only option. Once Notre Dame went coed in the late 70's it became the next best choice for women.
Close enough, but thanks for pointing out the distinction, minor as it may be and reflective of the university's neo-misogynistic attitude of the time.
Notre Dame University is among the top 25 colleges in the country. You did alright, Jan. :)
Jim
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Lori - I definitley think the Glad Press n Seal has a place in the Garage Surgery biz. I've already found so many uses for it myself ... one can only imagine what others will come up with. Maybe you can put your own logo on it ...
So, I am off to see Dr. Louie tomorrow afternoon - hopefully for the LAST time! He'll draw blood, check my incision and hopefully pronoune me to be cured. Actually, my incision looks great and I don't have any other signs of infection, so I think that chapter is done. I'll let you all know what Dr. Louie says, though.
Meanwhile, my eye is slowly de-puffing, and the skin is not all red anymore. These are the little bumps that can really aggravate you!
Yesterday I was very tired - ended up taking a nap yesterday afternoon, and then slept 10 hours last night. It is surprising to me that I am still getting this fatigued. However, at least I don't need naps every day, and the tired days are happening less frequently. I am quite sure that this is God's way of teaching me patience!
Debbi
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Hi Debbi -
Greetings from sunny Florida! Glad to hear your eye is de-puffing and things are looking up. Good luck on your visit with Dr. Louie tomorrow. I hope he does pronounce you cured! We went to St.Augustine today and it was even hotter there, so we didn't do much. Walked around downtown a little,checked out some shops, had lunch and back to my brother's house. We're heading down to Orlando tomorrow for a few days and heading home on Monday oir Tuesday, I forget which. Any definite location for our NY/NJ luncheon on the 19th?
Keeping my fingers and goes crossed for you,
Wendy
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The nurses and doctors all cracked up when they saw me tottering around in my Freudians - not sure if they were laughing at me or the slippers, but who cares?
;D
You went in armed with a great sense of humor, that's for sure! And I find your decision to keep a photo diary of your progress very courageous, and very sane since you knew it would help you track your progress and know you were getting somewhere!
My husband pointed his Iphone camera at me on day 3 in the hospital and then spammed the pic to all our family and friends--I was too loopy at the to stop him! And I'm so glad to be doing well that I've forgiven him since... What is funny is that when we got home I asked him to take a pic of my incision--it really bugged me that I had no records from the original surgery, only even knew the surgical approach used because my current neurosurgeon knew how to interpret the scar. DH's reply: "OK, but I don't want you to look at the pic for a few weeks till it's healed!" Now, how's that for doubledealing?
Best of luck with Dr Louie tomorrow!
Carrie
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Close enough, but thanks for pointing out the distinction, minor as it may be and reflective of the university's neo-misogynistic attitude of the time.
Notre Dame University is among the top 25 colleges in the country. You did alright, Jan. :)
Thanks, Jim. Actually SMC has been the top women's catholic college in the nation for many years. So I did do all right! Now I'm trying to convince my daughter what a great place it is. SMC is very big on generations of women attending, plus being a contributing alumnae should solidify her place ;)
Debbi -
good luck tomorrow. Hope everything goes well. Don't forget to post an update for us ;D
Jan
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Hi Debbi -
The story about your slippers is making me rethink the slippers I'm bringing to the hospital. I was going to bring my lucky bunny slippers (they are about 20 years old but look good for their age -- like me!!) and then thought it would be kind of silly. I'm bringing the lucky bunny slippers now!
Good luck with Dr. Louie today! I'm looking forward to your post.
Wendy
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Wendy -
how could you NOT bring your lucky bunny slippers?!
Go for it ;)
Jan
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The bunny slippers are the first thing I'd pack!
Maybe they will detract from your hospital gown not quite covering all the important parts! Everyone will be so busy looking at your slippers that they'll hardly notice that you're mooning everyone in the hallway! :D
Lori
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Yes, definitely bring the bunny slippers!! If nothing else, you'll need a good laugh yourself.
Debbi
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Wendy -
I'm thinking you need to post a picture of yourself wearing the bunny slippers ;)
But only if you've comfortable with that. I don't want to be accused of peer pressure ;D
Jan
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Hey, Wendy, maybe we can wear our slipplers to the July 19 lunch! We'll be in NYC, no one will notice... ;D
Okay, so the Dr. Louie visit ... all good! He pronounced my incision to be "good" wihch is strong praise coming from him. He poked and prodded me all over the place, asked lots of questions, took more blood and told me he'd call early next week with the blood results, but expected everything to be fine. Wahoo! I now consider that chapter in this story to be CLOSED!
And, brace yourselves ... I am off to get my hair "done" for the first time in three months tomorrow! That will definitely warrant a new picture. After three months of no color, compounded by tons of nasty drugs, my hair is beyond hideous. This rivals day 5 without a shampoo!
And, Lorenzo, I am going to follow the trip to the salon with a nice glass of something red - and I ain't talking raspberry iced tea!!
And, now I am off to see how everyone else is doing...
Debbi, giddy with excitement
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Debbi:
Great news! So pleased to learn that you're now 'officially' moving onward and upward with your recovery.
Enjoy the salon and the vino. Salute! :)
Jim
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Great, Debbi! I will never see you with a PICC line and your hair will look amazing on the 19th! Wonderful! Congratulations!
Eve
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Debbi -
2 days before surgery, I colored my hair, but didn't bother coloring the hair on the temples on the left as I figured that part would be shaved. I was wrong, and now have lovely hair except for the grays on the left....AND I even asked my dr. if he made sure to shave all the gray and he told me he had! Liar! ;)
Tammy
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Eve, yep, you'll only get the see the "Good hair" me!
Tammy, I also went to get the hair touched up a few days before surgery - never imagining that I'd end up having to wait three months! Ha. Well, I am just thankful that it is long enough to pull it up with a clip - that way the gray hairs aren't really all that noticable. And, no one can see what a scraggly mess it really is... ;D
I feel glad to be worrying about something as silly as this!
Debbi
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So glad to hear Dr Louie approves of your incision, Debbi. Hooray, hooray, hooray!
Hope your salon trip and celebratory toast are thoroughly enjoyable! And yes, please do post an "after" pic, so we can revel in the results along with you...
Tammy--I am getting a good chuckle out of your story, which I'm sure wasn't a bit funny to you at the time... My pre-OR request was that they goop as many layers of my hair out of the way as possible and not shave half my head, but I think Sweeney Todd (with an electric razor only, thank goodness) ran amok on the back of my head. I have a theory that the folks who shave you pre-op nod reassuring consent as you pepper them with specifics like you've just been wheeled into a hair salon, while remaining so focused on the actual surgery all along that any aesthetic/styling abilities they may have fail to see the light of day... :D
Carrie
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Now you've both got me laughing! Sweeney Todd, indeed!
I learned during my second hospital stay that Dr. Roland does the shave himself and his residents refer to it as the "Roland Technique". I suspect he - rightfully - prides himself on shaving an absolute minimum of hair. Here's photo I took myself today of the incisoin - see for yourselves!
(http://i280.photobucket.com/albums/kk167/debifulco/710Incision_IMG00032.jpg)
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Debbi, great pic!!!! Looks fab and healing terrific!!!!!!! :)
Phyl
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Thanks, Phyl! 'Bout time the darned thing looks good! You wouldn't have wanted to see the pictures in mid May!
Debbi, pretty darned happy with the world right now...
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Great pic, Debbi! Congrats on healing so well! I know ya have had some bumps, but they are somewhat to be expected (we didn't think it'd be easy right?).. I'm right there with ya in terms of the scar healing. I still have some swelling, but it's not near what it once was. Continued healing, my friend..
Brian
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"The Roland Technique", hmm? Wonder if he's published about that in the medical journals... ;)
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Welll, the haircut was the highlight of my week! I feel SO much better now!! The hair salon was predictably noisy, and I had to wear my eye patch to keep the blow dryer from dying my eye out (meaning that I felt like everyone was staring at me) but it was still time well spent. Between the anesthesia and all the other drugs after surgery, my hair was really a mess!
Now, I know that you may have seen some of my references to the Bosu Ball... For those unfamiliar with this bit of devilry, here's a picture of me on the blasted thing. It's quite a challenge, but very good for my overall balance, I think!
(http://i280.photobucket.com/albums/kk167/debifulco/712TheBosuBall.jpg)
Debbi, sneaking up on the Bosu again!
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Terrific haircut, Debbi--can see why you feel so good about it! You look so healthy, and I can't believe you can balance on that ball... (Are you sure there isn't an invisible cable holding you in place somewhere?)
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You look great!!! Your scar is in the same place as mine. Love your house!!!
Anne Marie
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Hi Debbi,
You GO girl!!!!! :)
Great balancing on the bosu ball!! Oh my I can only imagine what my dogs would do if I even tried that.
Also, your new do is lovely!
I love your spunk.
Mary
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Thanks, everyone! And, you should all know that this picture was snapped about half a second before I had to
"dismount" the ball! (Code for, I was about to fall off...)
So, I have been really enviious of all the folks with Blinkeze removable eye weights and have been trying to figure out how to find an opthamologist who could actually prescribe them for me. On a whim, I emailed a local guy who I have heard some good things about, on Saturday and experessed my interest in Blinkeze and asked if he was able to "fit" me for one. Lo and behold, he emailed me back Saturday night (what, does he think he's a neurosurgeon or something!) with a very detailed and helpful email! He even asked in his return email if I the surgery I had was for an acoustic neuroma!! I am going to call his office first thing tomorrow morning and schedule and appointment. I am SO excited! It would be heaven to be able to blink my eye, and I am so impressed with Tammy's account of her Blinkeze (thanks, Tammy!)
So, keep fingers crossed that the doc will be able to fit me in this week. And, btw, I would never have imagined six months ago that I'd be excited about taping a weight to my eyelid... ;D
Debbi, sneaking up on a Blinkeze...
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Just a quick update - I was able to score an appointment tomorrow morning at 8:45!! Very excited!
Debbi, Blinkeze in sight...
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I'll be very interested to hear more about these gizmos...
Good luck!
Carrie
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I've ordered my Blinkeze!!! He tested different weights, and we settled on the 1.2 mm weight, which allows me to completely close and re-open my eye. I said I'd pay for rush delivery, in the hopes that the weight will be here on Friday. I am SO excited!! He said this should make a difference with my dry eye.
He also talked about some additional things he could do if the eye weight isn't enough. The first would be a punctal plug. I've posted elsewhere to try to learn more about this, but if anyone reading this thread can comment on punctal plugs, I'd appreciate and and all feedback.
He said a third procedure would be a surgical lift of the lower lid. And, of course, a permanent eye weight. Well, one step at a time. At least he was conversant with all of these things, and even knew about acoustic neuromas. Yay! Afte the first dud opthamologist, this guy was a breath of fresh air.
So, I am keeping fingers crossed that on Friday I'll have a brand new Blinkeze! If so, I'll make sure to post a picture. Big thanks to Tammy, Sara and Nancy for sharing so much good info about this.
Meanwhille, when is the fatigue going to go away???? I can definitely do so much more than I could a month ago, but when I get tired - I really get tired! Sometimes I feel like I've been hit by a Mac truck! I know, I know - patience, Debbi....
Debbi, eagerly awaiting Blinkeze
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Debbi:
Congratulations on your (soon-to-be-here) Blinkeze! :)
I'm sure it will be a big help. The fact that this ophthalmologist is AN-savvy and helpful is certainly a day-brightener.
The fatigue is a variable that we all have to deal with but it does take time to dissipate and often seems to be at a glacial pace. I doubt even a doctor could give you a credible time frame. It seems that everybody's experience is slightly different. At about 6½ weeks post-op, you probably have a few months to go before you're back to full strength. As my doctor explained it, "your body was invaded and traumatized by the surgery. It takes some time to heal and saps a lot of your energy to do it". I would hope that by Labor Day, you'll be feeling less fatigued. Of course, I'm just speculating wildly and have no idea what the actual post-fatigue time frame will be. I hope it's next week. :)
Meanwhile, enjoy your Blinkeze and accept my wishes for your continued healing as you move forward.
Jim
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::) ::) ::) ::) ::)
Hooray Debbi!!!!!!! I was keeping my fingers crossed for you. I thought of you when I got up this morning hoping you were in getting your Blinkeze ordered. I can't wait to see how you like them. My friend here with dry eyes, got the plugs and said they helped. She is out of town right now and just left, so I will ask her more about it when she gets back. Dry eyes are a problems for a lot of people here, needless to say.
Take care, dear person!
Congratulation hugs....
Mary
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So glad you're getting your Blinkeze...good to know there's such a thing.
Sorry you continue to feel so fatigued. Anesthesia, let alone invasive surgery, especially of the magnitude of yours, takes so much out of our bodies and it seems to take so long to get the energy back - but you WILL !
In case I haven't mentioned to you, thanks for your continued updates as well as your support of others here. Don't know how you've done it w/ all you've been through...same to all you others on the forum that have recently undergone treatment and yet continue to contribute here while you're trying to recover.
cindy
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Debbi: I have a punctal plug and it does seem to help with the dryness. I think part of our problem could be time spend in air conditioning. As you know AC pulls the humidity from the air so it makes sense that it pulls moisture from our bodies as well. Just my take on it. Anyway, I don't use any heavy duty drops or ointment at night, but I do need to moisturize my right eye first thing in the morning. It still doesn't cry tears and I'm 15 months post op.
Linda
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Debbi that is great news. I asked my opthamologist last week (i think) about the blinkeze weight and she knew nothing of these. I am hoping that the next opth. i see (end of July) can help. In the end though, i still have the double vision though... ug.
Look forward to hearing how these work for you.
Glad to find you in great spirits (as you generally are) and doing well. Good work.
Trish
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Debbi -
congrats on the Blinkeze - hope it helps :)
I concur with Jim on the fatigue issue; in my experience, his post is right on target.
Jan
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Hi Debbi-
I'm back from Florida! We had a great time but I haven't been online since I left my brother's house last Wednesday and apparently have missed a lot! I will do my best to catch up on everyone by tomorrow since we are going out soon. Congrats on the new opthamplogist and that you will soon become the proud owner of Blinkeze! I really hope they do the trick for you!!! It's wonderful when you find a doc who knows his/her business!! Love your new hairdo and envy you your balance on that ball. I would have bee on my rear end in about 10 seconds. Dr. Roland should be proud of himself for his shaving prowess!! I've seen how much hair some people lose for this surgery. I've actually been wondering if I should bring a scarf or loose fitting hat with me. I'll ask Dr. Choe when I see him on Friday, but what do you think? He says I'll probably get to wash my hair in the hospital before I go home -- I feel very excited and a little scared about this at the same time, I'm sure it won't be pleasant, but it will be great to have clean hair. Tell me what you think!
Wendy
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Glad you are going to be able to get the Blinkeze so quickly, Debbi--that's just grand! I hope it makes a HUGE difference in your eye comfort level.
As far as the other 2 treatment options you mention in your post--the punctal plug is temporary, but I'm surgical lift sure doesn't sound that way... (I'm thinking you probably want to limit yourself to temporary measures at this point, since the prognosis for your facial nerve is so good?) The punctal plug wouldn't stay in my eye (and I was looking for a permanent fix by then), so I got the duct cauterized for good, but your eye may be more cooperative!
Carrie
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Hey, Wendy! Welcome home! Yes, bring a scarf to the hospital. One of my friends brought me a scarf (I never thought of it myself) and it was such a big blessing to cover my head on the way home. It will be a plus if you get to wash your hair, but just in case... A nice scarf can do wonders!
Carrie, thanks for the feecback on the punctal plug. I agree with you that the surgical eye lift seems like too much right now - I'd like to see if this will resolve in time. I've been doing some reading on the punctal plugs and am fomulating a list of questions - one of which is what type of plug he uses. Apparently there are some now that are almost gel-like and mold better to the individual tear duct, reduing the "ejection" rate. Much to learn. First, though, I'll see how the Blinkeze works ...
Jan, I can't wait to hear tales of NY and NJ!
Jim, sending lots of good vibes and prayers your way for the Friday MRI. Will look for your post Friday...
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Wendy -
when is your surgery?
Also, I vote no scarf or hat, but that's just me :D
Do bring sunglasses for the ride home though.
Jan
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Hi Jan,
My surgery is Friday, July 25. So far I am feeling very calm and confident about it. I've asked everyone -- first Dr. Choe, then people in the Cyberknife support group and now all of you so many questions I really feel very well informed and ready to do this thing. This feeling kind of surprised me to tell you the truth but I guess it's just my way of accepting the inevitable. The mind is a wonderful thing sometimes. Now I'll see if this feeling lasts up to next Friday, hopefully it will. Thanks for the input on the scarf idea and the sunglasses. That was something I hadn't thought of.
Debbi - Thanks to you too. I have mixed feelings about washing my hair in the hospital, as I said in my last post, but I had a feeling that whatever happens a scarf just might be a good idea. Now I'll have to go look for one before next Friday since I haven't worn one in years.
Lookiing forward to Saturday!
Wendy
P.S. I will take pictures of the lucky bunny slippers in hospital but I'm not sure they would make the trip into NYC and survive. I thought they were 20 yeras old (they've gone through the wash a few hundred times I think but still look pretty good considering their age and clearning history) but realized they mush be even older than that. Rob got them for me before we were married and our 23rd anniversary is coming up soon, I'd bring them with me and wear them in the restaurant, but with my luck I'd lose them. I wouldn't want to do that just before my surgery. I need all the good luck I can get right now. I guess I'll just have to sit down and leran how to post pictures once and for all.
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Hi all-
Wendy, so glad you are feeling calm and serene. THe last few days before surgery, I also felt a strange calmness. Like you, I believe it came from having had my questions answered, and from feeling at peace wiht my decision. You may still get the odd racy-heart feeling between now and then, though!
Hey, how about if I wash my "Lucky AN Scarf" and will it to you? I could bring it Saturday. (REally, I'm serious.) It's the quazi-animal print that is featured in some of my early blog pics - looks good on everyone! Since Steve is slow with the hat-knitting, maybe this can be my contribution!
Hey, Wendy, do you have a scribe? Is Rob up to the job?
Well, as for me, I am holding my breath and hoping the Blinkeze arrive tomorrow...
I've had some weird movements in my chin, which I sincerely hope aren't early signs of synkenises. I've been on the bells palsy website trying to read up more on that. ugh.
Debbi
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Sorry to hijack, Debbi -
Wendy - there's a thread from a while back on what to bring to the hospital. I found it very useful! In addition, I would suggest bringing a vibrator massager (like the kind you can get at our local Walgreen's). My neck was quite sore after surgery (a common occurrence, from what I've read here) and it was very nice to use and helped a lot.
We'll all be cheering you on!
Tammy
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Hi Debbi -
I'm keeping my fingers crossed for you that the Blinkeze come in today. They sound like a great invention (I hope I won't need them though) and hope they do the trick for you. I also hope the weird movements in your chin turn out to be more returned facial movement instead of anything else. If you're sure you want to lend me your scarf that would be great - a kind of passing the torch thing!
Tammy - Thanks for the advice on the massagier -- I'll pick one up. I read about people having neck pain after surgery too -- every little bit helps I saw that list too and have started getting things I think will come in handy or that I will really need in the hospital. How are you feeling? I haven't had time to catch up on how everyone is doing yet since I got back from vacation on Wednesday.
Debbi -
See you Saturday -- it should be great!!
Wendy
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Tammy, no problem, and great advice - that was a great list! Hey, how are you doing? How are your Blinkeze working?
Wendy, one scarf, coming your way on Saturday. Of course, you have to promise pictures from the hospital - and we arent' just talking slippers here!! ;D
Hey, I have a new, very tiny movement at the side of my nose!! ;D ;D ;D It is so faint that I have to really concentrate to see it at all - kind of like the first mouth corner movement. I was feeling kind of discouraged last night, but now I am motivated again. I have been practicing in front of my hand mirror, trying to isolate the really small movements. Wow, talk about testing my patience! I am an "instant gratification" kind of gal, so this stuff is really challenging for me personally. However, I have made the decision to make it my missioin to be more patient - that is part of what I will gain from this experience.
Debbi, practicing my patience... :-\
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Debbie,
That part about patience is a tough one, isn't it? But it's amazing how such a tiny improvement in our condition can make us so happy and lift our spirits. I'm happy that you have more movement at the side of your nose.
Syl, also practicing patience
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Debbi:
Congratulations on a new sign of movement. Small as it may be, this is progress and your elation is quite justified. I hope there is a lot more to come in the very near future. With AN recovery issues, patience isn't simply a virtue, it's a necessity.
Jim
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Thanks, Jim and Syl, for the encouraging words and support. Yep, this patience thing is probably long overdue in my life. Not easy to acquire, though, and I do wish I had come up with a less drastic way to develop it!
Okay, so I went and got my new Blinkeze about a half hour ago! Yippee!! Here's a picture:
(http://i280.photobucket.com/albums/kk167/debifulco/DebsBlinkeze716.jpg)
It is too soon to tell if it will slide down my eyelid, or off my face or anything. Right now, it just feels a little weird, but I am able to blink which is pretty darned cool. I don't seem to be able to close that eye fully by itself, but if I close the good eye and really concentrate, I can close the AN eye. Major progress!! I'll keep you all posted!
Debbi, blinking!!!!!! ;D
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A day early, too!!!!!!
Congrats on your new BLinkeze. Do they have many colors to choose from? Yours matches your lid perfectly! It has to feel good to be able to shut that eye. While so far I have not had that issue, it seems like a symptom you would want to have addressed. I am also thrilled to hear of your nose wiggle! Beware, Samantha! ;D
Mary 8)
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Thanks, Mary - and I wonder who else out there gets the Samantha reference?? ;D I even remember both Darrens...
There are 4 or 5 flesh colors that the Blinkeze comes in - I think mine is the one called "pink" - you'e right, though, it matches my natural skin tone surpisingly well. Even so, it is pretty noticable - I should get some strange looks when I am out and about... However, I expect that the overall "slack" face may distract people form the "band-aid" on my eye! :D
What was funny was that when the opthamoligst came out to help me put the Blinkeze on, his entrie staff wanted to watch - so I had an audience of about 9 very interested women watching the "offical inauguration" of my eye weight. What a nice staff he has - I always think that's a good sign when the physician's staff is interested and engaged.
Trish, if you're checking in here, don't give up on the opthalmologist - my first one was a real clunker, but this guy more than made up the difference. I am keeping fingers crossed that you find an equally caring and copmetent doc to help you care for your eye. It's worth the hunt.
Debbi, blinking up a storm in NJ...
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Hi Debbi!!!
What great news!!! the Blinkeze is hardly noticable. It may not be easy and feel weird, but it must be great to blink again. Congratulations on your Blinkeze and your newly blinking eye!!! (great pic too). Great news about having a little more facial movement. I'm sure every little bit helps.
Wendy
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Well, I'm off to give my Blinkeze a test drive in the heat and humidity of NYC. Meeting Wendy, Eve and Joe for lunch and can't wait! Willie is off racing this weekend, and is worried about me making the trip into NYC alone, but I am ready for this little jaunt. It's time. Just hope my blinkeze doesn't slide off my face!
Incidentally, it's only been a day and a half with the blinkeze, but the difference is amazing! I don't have to put drops in my eyes nearly as often and I don't have to wear a patch at night. Willie says he can see a big difference when I am talking - my eye actually closes now instead of just staying open with the "dead man stare." ;D
Pictures later!
Debbi
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I am so happy for you Debbi! Have a great lunch with some of the bunch. I wish I could come and join. ;) I am excited the Blinkeze is working so far.
Noticed Willie is racing....what kind of racing. My husband races, too. He has autocrossed since before we met. We have ad so many different cars,, I hav always said, I am glad he isn't fickle with women as he is with cars or I would have been LOOOONNNNGG gone! :D
Mary 8)
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Debbbi:
Just popping in to say that we await your 'report' (with photos, of course) on the 'AN Survivors' luncheon in Manhattan. :)
I'm also a bit curious regarding the efficacy of the Blinkezeâ„¢, especially in the very hot and humid weather we're experiencing today on the east coast. I'll assume that it 'performed' as expected and a good time was had by all.
I'll check out your 'report' on the AN Community page. http://anausa.org/forum/index.php?topic=6667.0 (http://anausa.org/forum/index.php?topic=6667.0)
Jim
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I am happy to report that the blinkeze stayed put, even in spite of the very hot temps yesterday. In fact, I haven't taken it off since Friday night and it seems to be staying put. My directions from MedDev say that it can be worn up to 3 days before needing to change the adhesive backing.
What I haven't quite mastered yet is the right position to affix it. I placed it a little higher on my lid Friday and it almost seems to be working too well now - it's dragging my upper lid down a little, as you'll probably see in the Great NY AN Lunch picture. I'll probably re-apply the adhesive tongiht, so will see if I can do a better job. Even wtih the learning curve, this thing is SUCH a big help! I've been up a couple of hours and still haven't had to put any drops in my eye - that's amazing!!
And, in case you missed the picture in the other string, here it is - Eve, me, Wendy and Joe at the Heartland Brewery in NYC!
(http://i280.photobucket.com/albums/kk167/debifulco/719HeartlandBreweryNYC-EveDebbiWend.jpg)
Mary, Willie races in SCCA. His team owns a race-tricked Mazda Miata and they drive at tracks from New Hampshire to Ohio to Virginia. He'd be the first to tell you that they're a bunch of "middle aged guys having a mid-life crisis and living their dream." Heck, if this is all the mid life crisis entails, I'm all for it! Of course, I am staying away from the tracks this year - too much noise.
Debbi, off to the winery to check on our wine ...
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Hey Debbi, thanks for the words of encouragement and photos you have shared. Glad to see this is working out for you... another step up the ladder, great stuff.
Keep on blinking!
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Debbi -
You all look like you are having a great time! BTW, I don't notice from the photos that one eye is different from the other. I know we all know our own faces the best and you see it "up close and personal" so you can tell. I am so thrilled for you that the blinkese are working out so well. All of us on this site should invest in their company. :D Such a plus that has to be to not be worrying about eye drops all the time. HOORAY Debbi. I am so happy for you.
Weldon is SCCA also, if our husbands get together they would REALLY hit it off. Right now my husband owns a 1985 1/2 SVO Mustang. It one of the bigger ones he has. When we met, many toy cars ago - he had a street legal but set up for autocrossing TR-4. He proposed to me in that car and when I accepted, I threw my arms around him and he hit his head on the roll bar! :D. I had so much funwatching him race. I only tried it once with an Elva Currier E prod car he had at that time. It had impossible gearing for me. He got top time of day for all classes and I got lowest. That ended any racing career I might have dreamt about. Now even watching it would be a huge problem as well as the noise. I can't watch Nascar or Indy car racing on tv, even.
You keep on blinking, Debbi, and enjoy! It is funny the things we appreciate after this. How many people today are saying, WOW I blinked my eyes and appreciate it! We really go through life without awareness of all we should be appreciating. It is so good to hear your enthusiasm for this new aid for you!
Take care,
Mary 8)
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Yes, isn't it amazing the things we now appreciate ... like blinking!
I was wickedly tired yesterday, which I kind of expected. The trip in and out of NYC was about 2 1/2 hours each way, so Saturday was a long day. I was still so exhilirated when I got home Saturday evening that I stayed up pretty late. And, Sunday morning I woke up feeling really tired - duh!
Still, I went up to a local winery (about 45 minutes from here) yesterday morning with my neighbors to check on the wine we're making. It was time to "rack" the wine, which means moving it out of its oak barrel and into a stainless vat, cleaning the oak barrel, and moving the wine back into the barrel. We tasted the wine, of course! It is still very young, but already shows promise. Hopefully in about 14 months, we'll be able to bottle it and enjoy...
After the winery, I can home and slept for 2 hours. Well, at least it doesn't surprise me anymore when I get so fatigued. And, it was so hot outside that napping indoors in the cool air conditioning was bliss. :)
Mary, if you are at the symposium next year, we'll have to put Weldon and Willie together and let them talk racing - I'm sure they'd get along famously! BTW, love the story about Weldon's proposal!
Debbi, off to another week...
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Btw, Debbi, congrats on the blinkeze! I would probably have not noticed it if you didn't point it out! Congrats on the lunch also! I wish I was closer cuz I would have met yall there! I went to another concert Saturday night (not as close to the stage as the first, but it was loud enough!). Life is definitely getting back to "normal" for us eh? Soon we'll all be talking about the good ol' days like Phyl, Jan, Steve, and Jim. ;)
Congrats on doing so well!
Brian
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Hi Debbi -
Glad to hear you had a good time at the winery yesterday. Is sounds like it was a lot of fun.
Wendy
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Soon we'll all be talking about the good ol' days like Phyl, Jan, Steve, and Jim. ;)
Hey, who are you calling old??? ;D LOL
Jan
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I don't know exactly who was being called old - but I know it wasn't ME! ;D
Lori
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Ah, Lori - welcome back! I hope the NJ shore met all your expectations?
As you can see, we're all still here and at least one of us (!!) is blinking!!
Deb
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Soon we'll all be talking about the good ol' days like Phyl, Jan, Steve, and Jim. ;)
Hey, who are you calling old??? ;D LOL
Jan
If the shoe fits.... or, in one of our cases, if the Blinkeze fits. ;)
Brian
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Wait, is someone besmirching my Blinkeze???? >:(
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"Besmirching", Debbi ???
Have you been reading Jim's posts again!!! :D
Jim, if you're out there, can you give us the definition of "besmirching" ?
Jan - probably older than both Pooter and Debbi :(
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Debbi - I'm glad to be back! And yes, the shore met all my expectations! I have such good memories of it from going there as a child with my family so it was very nostalgic (hey, that's almost a big word!) I'm sure I ate enough pizza to last a year or so. It's always fun to watch my kids enjoying the same things I used to do. And my son actually beat me in skee-ball, which is something that's never been done by anyone in my family. I am no longer the highest scorer - the torch has been passed. It was a sad day.
Anyway, I'm very intrigued (look at that - another big word) by your Blinkeze. I'm scheduled to have the 7-12 nerve jump in October and I know I will be going back to square one as far as the facial issues go, so I may look into that. It looks like it blends in very well in your picture - I'm surprised to hear that you think it stands out. So, you Blinkeze girls, keep me posted on how you like them - even if they are besmirched. ???
Lori
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Wait, is someone besmirching my Blinkeze???? >:(
I would NEVER! (Whatever you're talking about!) ;)
Brian
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I thought "besmirching" meant something like making fun of something so I looked it up. It actually means to detract from the honor or something (there's more but I thought that was enough of an explanation).
Hi Lori -
Good to see you again. I just knew you could use big words with the best of them!! Is your surgery all set-- I mean do you have a date yet or will that ocme later? Keep us posted. It sounds like you had a wonderful time and that's what vacations are supposed to be about. Hope your batteries are charged and you and Jan will start planning even better things for the garage business!
Wendy
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Yes, besmirching! I'm trying to catch up with Jim in the big words category! Thanks for giving us the official definition, Wendy!
And, Jan, I am quite sure I am older than you or Pooter! My Big 50th birthday celebration was two years ago - do the math... ;D
Lori, so glad you had a good vacation, atlhough very sorry to hear about your mom. Glad you are keeping the Skee ball thing in the family, though! As for the Blinkeze, still loving it although I still am not totally adept at getting it the right exact spot on my eyelid. It shows up more "in person" than in the picture - several people have asked what I did to my eye because it looks like a tiny band aid. Of coruse, if I am smiling, they don't bother to ask about my eye - ever notice how NO one wants to ask " Hey, what happened to your face?" ;D
Brian, I've got my eye (the good one) on you, man - don't try any funny stuff with the besmirching and all!
Hey, it took me two days to recover from my trip into NYC on Saturday - had to nap both Sunday and Monday, but felt fine yesterday. And, I'd do it again in a heartbeat!!
Debbi, having a good day... :)
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Well, according to my math...Debbi should be about.....29? ;) I told you I was never good at math.
Wendy, my 7-12 is scheduled for October 3rd, but I'm on the cancellation list, so if something opens up sooner, I'll grab an earlier spot. Since we'll be leaving here in about a year, I'd like to have as much of this taken care of here before we go. I'm not sure what's going to be available in Virginia Beach, although since my AN surgeon is now in NC, I could always go there - I think it's only about 2 hours away. Besides,I figure if I'm going to look worse for a while, I might as well get that over with here, where I hardly know anyone and the ones I do know are used to seeing me with a droopy face.
I haven't finished my coffee yet today, so no big words. I'm having trouble typing the little ones right now! :-\
Lori
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Lori:
Good to have you among us again.
I'm glad you enjoyed your vacation at the shore, even if it marked the passing of the 'Skee-Ball® Champion' torch. I used to be the 'house champion' at miniature golf. No more. Although my skill level hasn't changed much at all (I get the same scores as I did 5 years ago) my adult son can outplay me about 90% of the time. Even my angelic wife, who was always an indifferent player, is very close to my playing level, now. I would comment that its tough to get old but since no one here is, I'll resist that temptation. After all, 'we're only as old as we feel'. I feel about 45 years old today, so age is not an issue for me. :)
I trust your October-scheduled 7-12 operation will be totally successful. I agree that observing Debbi's experience with Blinkezeâ„¢ is useful for future reference, in your case. I think it's great that such an aid is available and that it seems to work so well for those who require it. Debbi looks fine and I'm so pleased she is finding things easier with the Blinkezeâ„¢.
I hope I haven't annoyed anyone with 'big words' or, more likely, unfamiliar words. It's just me being literate and assuming everyone else is, too. Fortunately, despite some occasional good-natured kvetching, on this website/forum, I'm usually correct. :)
Jim
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... despite some occasional good-natured kvetching, on this website/forum, I'm usually correct. :)
Jim
I'm glad to see I'm finally rubbing off on you! ;)
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Jim -
I can't speak for the others, but I personally love all the big words and just like to tease you ;)
I've actually expanded my vocubulary greatly since I started reading your posts.
Lori - you Skee Ball Champion, you - did you remember to put your surgery on the AN Calendar?
Jan
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Jim -
You make me stretch the the the limits of my vocabulary and I consider myself fairly articulate. When you use a word I'm unsure of I just look it up -- no big deal.
Cheers,
Wendy
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Yep, and I'm the nerdy friend from high school who used to actually read the dictionary! Sad, but true... of course, that was years ago ... ;)
Debbi
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I used to read the encyclopedia, Debbi - almost as bad...
Tammy
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Jim -
You make me stretch the the the limits of my vocabulary and I consider myself fairly articulate. When you use a word I'm unsure of I just look it up -- no big deal.
Cheers,
Wendy
Wendy -
you're definitely a whole lot nicer than I am. I usually just ask Jim to find me the definition - and thankfully, he usually accomodates me 8)
Jan
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Debbi,
I have to confess to be the nerdiest of them all. I used to read both the dictionary and encyclopedias. When I was in high school I heard a girl in my class telling a friend she had been flipping through the encyclopedia the night before the Scolarshop Regents (for those of you who aren't familiar with this test it's pretty much what it sounds like a state college scholarship test. If you score high enough you can get a full scholarship to the NY State college of your choice or at least a partial scholarship, or you could at one time anyway, I don't know if this test still exists, it's been a while since I took it). At the time, I thought I was the only one nerdy enough to read dictionaries and encyclopedias for the fun of it. I guess there were more of us than I thought..
Wendy, berathing again but still a little anxious
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Hi All-
Just returned from seeing Dr. Roland and am feeling pretty good!
I talked to him about the neck/head pain that I still have and he is certain it will pass in time. Also discussed the almost daily changes in my disequalibrium and he said this is normal for some people for up to a year. As long as I continue to have more good days than bad, I'm moving in the right direction.
We mostly talked about my facial nerve. He was able to see a lot of improvement in my whole central cheek area (the shortest strectch of facial nerve and typcially the first to regain animation) and was very encouraged by that. He confimred that the eye and lower lip/chin will take longer. He also said that a 90% return of animation would be a very good outcome, especially considering how traumatized the nerve was.
On the Brackman, he feels I am less than 4, but more than 3. I should end up somewhere between 2 and 1, closer to 1 - and of coruse, there are NO guarantees. Still, I feel very encouraged by this. I'd already kind of figured that a 100% recovery was unlikely, but I can live with 90%.
I also got a copy of my surgical report (thanks to Eve for reminding me about this on Saturday). It was fascinating reading and I learned some new things. My AN was actually 2.4, not 2.0. One comment of particular interest (to me) - "The tumor was quite stuck to the facial nerve at the portion where the tumor exited the internal auditory canal and pushed the facial nerve forward over the rim of the porous acousticus." I also apparently had a fair amount of brainstem indentation. It was really interesting to read the report. Any of you info junkies out there who don't already have copies of the Operative Report will definitely want to get it.
BTW , I also learned that both the cochlear and acoustic nerves were cut. Not that it matters, but it was interesting to have the answer on the cochlear nerve.
Willie and I walked up to 3rd Avenue after the visit, and had a very enjoyable lunch at one of favorite old haunts. Italian, of course.
Life is good ...
Debbi, smiling while I totter about...
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Debbi:
Thanks for the interesting update on your visit to Dr. Roland. Mostly good news and certainly a positive prognosis for the future. No wonder you're feeling pretty good. I trust the NYC visit and lunch were beneficial to your overall disposition. I'm so glad things are looking up for you and that your spirits have been lifted. You deserve that.
Thanks too for your many contributions to these forums. You're a valuable member here. Your compassion and concern for other AN patients is obvious and appreciated.
Jim
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Debbi -
I think reading one's operative report(s) is something every patient should do. Some of the terms are a bit confusing, but it's fascinating reading and usually explains a lot of things.
Glad your recovery is moving in the right direction. Before you know it, you'll be able to stop visiting your doctor on a regular basis and just see him once in a while.
Although I really like my doctor, I personally found it very nice to reach this milestone. I think seeing him on an annual basis is going to suit me just fine 8)
Jan
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Hi Debbi -
Congrats -- it sounds like you got lots of good news. The surgical report sounds fascinating too. I'm so glad Dr. Roland feels you're making such great progress. Keep up hte good work. I'll be giving you a call soon.
Wendy
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Debbi,
Great progress! I am so happy for you! Don't forget to get copies of your radilogist's reports... ;D
Eve
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Don't forget to get copies of your radilogist's reports... ;D
And your MRIs, if you haven't already done so.
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Hello All~
I am trying to get caught up on everything and these are my comments from this thread (even if everybody else is way past these little topics):
1) WAY TO GO DEB!! Sounds like you are making great progress and the Dr. visit was a good one!
2) If you want to talk about the "Good Ole Days," I may be younger than a lot of you, but I have to reach back a LOT longer to find those days than most of you guys; however, I have NEW Good Ole Days since the AN!!
3)Jim- I LOVE the big words. I have always been fascinated with words and appreciate someone who used them regularly and correctly!! I never read the dictionary (or Encyclopedia) but have one in close range and am ALWAYS looking something up! I am a HORRIBLE speller and when I taught I had dictionaries by my table and the overhead so I could always look stuff up while writing with the class. I guess I would always say, "Let's look in my Handy-Dandy dictionary" because one day it was on my desk and one of the 3rd graders said, "I'll get your Handy-Dandy dictionary for you Miss Stacy!" I guess Addi was around & watching Blue's Clues by then...
Have a great day everyone!!
K
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Debbi - all good news, I guess. Congrats on continuing to heal and get better! We'll all get there one day! We all have to have patience, I suppose. That's harder for some than others.
Brian
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Congrats Debbi!! Sounds like things are progressing smoothly for you.
Ps, you and your husband always seem to eat the most delicious foods
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Hi All-
I must say that this has been a very good week, in my little corner of the world. I feel optimistic about the future, and am able to see steady, albeit slow, progress.
And, yes, Kim, Willie and I do seek out yummy food whenever possible! I am profoundly grateful that my taste buds are more or less intact after surgery - yet another small gift!
Pooter, you are right about us all needing patience. I've managed to get pretty far in life without much of it, but this AN thing has definitely forced my hand! ;)
Eve and Jan, thanks for reminding me about the radiology and MRI reports. I have the MRI report, and have requested the pathology report.
Kay - I am SO glad to see you back!!
I'm off to see if I've gotten any word from Wendy's hubby ...
Debbi
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This week will mark the 3 month anniversary of my surgery - wow! Even though I had some complications and my recovery didn't go as quickly or as smoothly as I would have wanted, I must say that I am quite pleased with where I am today.
During the past week, I have started to be aware of how much easier things are getting. I was in the grocery story over the weekend (the busiest time, of course) and realized that I wasn't feeling anxious or wanting to run out the door. That's a BIG improvement!
I had dinner with a friend Saturday night in a restaurant that had a lot of background noise. I had to concentrate and pay attention, but I could hear what was being said. And, when we left, I wasn't exhausted! Another BIG improvement.
I can't smile yet, but I have a very promising little muscle next to my mouth. More good news!
In general, I am just feeling BETTER. I don't tire as easily as I did even 4 weeks ago. I'm not nervouse about driving. I'm adjusting quite well to SSD. I'm having more good balance days than bad ones. You know what? Life is getting better and better each day.
Oh, and my belly scar is definitely looking better....
Debbi, counting my blessings which are many...
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Deb~
As always, you are doing great and have a great attitude (which I think makes all the diference in the world!)!! Trust me - it gets better and better still!
K!
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Hooray Debbi,
I am so glad you are seeing such progress. It is always such a comfort to know progress DOES happen.
Take care,
Mary 8)
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Can not believe it's been 3 months, but I'm sure it has seemed quite long for you! So glad you're feeling so positive about things, but then, you have had such a great attitude throughout your ordeal. Thanks for your continued updates and support and encouragement to everyone else here!
cindy
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Debbi:
You're progressing, even if not as rapidly as you might wish, but seeing progress is vital to staying positive. You're consistently upbeat, affirmative attitude is inspiring to many and has no doubt been a real benefit to you. That attitude has it's own life and has spread to others following your journey. You have many fans and supporters here, as you know. We cheer your victories and empathize with your down days, which in your case, are relatively few. When I count my many blessings, your acquaintance via these forums is among them.
Thanks for remaining an essential member of this group. :)
Jim
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Wow, Debbi - 49 pages of replies to your updates! You are clearly loved and your progress followed by many, so I would just be jumping on the virtual band wagon when I add my hurray, and wish you continued improvement!
Julie
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I must say that I feel that I've made some wonderful friendships here - who knew so many really great people would have brain tumors?? ::) I find myself worrying about you, cheering you on, celebrating your successes each day. Willie asks me each week - "who's having treatments this week?" Yes, you've all become a part of my life in a very special way. I'm glad that I can hang out here, and happier still if I can provide support and encouragement to others along the way. And, I remain profoundly grateful for the support and encouragement you give me each day.
Thanks!
Debbi
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Hi Debbi!!!
It sounds like you are doing even better than ever. I am so glad you seem to be past all the hurdles your AN journey has placed in your way. You truly are one of the strongest people I have ever met. As you probably know -- I AM HOME!!!!! It feels great to be out of the hospital. I got home yesterday about 3:30 p.m. I have to say that as soon as I sat in the wheelchair that returned me to the outside world I felt about 85% better. I tried posting almost right away but could not stay online very long because I am having a big problem with my back -- probably from all the uncomfortable hospital beds I've slept in in the past week. Today has been a much better day although my back is still killing me. All I can say is thank God for Thermacare Heat Pads -- they've saved me a lot of pain.
When I think about how far you've come in the past three months or seem it seems to me you have had an amazing journey and happily it seems to just keep getting better. You are truly an inspiration in this forum and I think I am not alone when I say you have set the barametor high for those of us who follow you.
You rock!!
Hugs,
Wendy
P.S. Thank you again for being such an excellent press secretary!!!
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Wendy - I'm so GLAD that you are home!!! You must have loved sleeping in your own bed last night! And, have you been able to shower and wash your hair? I think it was Marci who compared that to a religious experience - an apt description! Your back may hurt for awhile (mine did) - can you try to gentle stretching? I found that this really helped me in terms of getting some of the "kinks" out.
As for me, yes, I am feeling good these days. I feel so much less self-conscious about my face now and I think that is a big help mentally. I still get tired some days, but I know that is just my body trying to make me listen so it doesn't worry me. I am doing really well with the SSD thing so far, too. Yep, I think I can safely say that I've survived brain surgery!! :D
Hope everyone is having a good weekend.
Debbi
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Hi Debbi -
I would say you have more than survived brain siurgery -- you have met every challenge with courage. Sometimes I think we got these things to test us iln some way. It seems to bring out the best in just about everyone from what I've seen. I not only got to shower and shampoo, but I did it in record time -- two days after surgery with the permission and blessing of the amazing Dr. Choe. Check out Marci's thread on showers for my story if you'd like.
Wendy
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Debbi -
Just popping to say "hi". I think my tenure in the Icky Head Club may be short lived. I took my bandaid off earlier this evening to change it and it was dry and the incision has remained dry since then I'll see what tomorrow brings, but my icky head experience may be over. YAY!!! Hope you are feeling well.
Wendy
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Yep, no one wants to stay in the icky-head club a minute longer than necessary! Glad you are done (hopefully) with that, Wendy!
So, I had to give my eye a Blinkeze-break. My eyelid started to get all puffy and scratchy on Thursday, so I very reluctantly removed the weight and have been suffering through relentless drops and an eye patch at night for the last 3 nights while my lid recovers. I have always tended to be sensitive to adhesives, so I knew this might happen. Damn, though - it sucked not having my blinkeze all weekend! I had almost forgotten what a royal pain it is to constantly keep puting drops and gel in my eye! I just put my blessed Blinkeze back on this morning, and hopefully I'll get a good stretch with it before I need to take a break again.
I'm driving up to Newburgh, NY (near West Point) later today for a 2-day meeting that starts tomorrow morning so I wanted to be able to wear my blinkeze for the drive which will be about 90 minutes. I hope to be able to wear it for the entire 2 days as it will be so much easier. However, just in case, I am traveling with the full complement of eye care stuff. I'll be brining the steamer trunk....
Don't know if I'll have internet connectivity at the Inn, so I may be absent for a few days from the forum. But, I'll be continuing to send warm wishes and good thoughts to everyone here, no matter what stage of recovery you're in.
Cheers!
Debbi - blinking at you! ;)
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Hi Debbi -
Hope your trip goes well and your eyelid and the Blinkeze get along for the duration. It seems my incision is fickle and I'm not quite ready to leave the icky head club yet -- darn it! At least I'm just dripping occasionally now instead of trickling. I decided to leave the bandaid off today and just smear on some bacitracin once in a while and see if thet helps things along. Hopefully another day or two will be the end of this phase of my recovery.
Hope your trip is geat!
Wendy
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Hi Debbi -
Just checking in to see how you are, I haven't seen you post lately so I hope that means you are busy getting on with your life more and doing very well
Let's chat soon if you feel like it, let me know.
Wendy
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Would love to catch up - you around this weekend?
BTW, here is a picture of my pre-surgery brain scan - pretty cool! Can't wait to see what it looks liike in a few weeks when I go for my first post op MRI.
(http://i280.photobucket.com/albums/kk167/debifulco/AN1.jpg)
Debbi, happy Ethel is gone...
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Hi Debbi -
Wow -- Ethel looks impressive. I'm sure it will we kind of weird, but in to good way, to see that she is gone. When are you going for your MRI? I will be home on Sunday. We are going to the beach tomorrow which should prove to be an interesting experience -- I haven't walked on sand in almost a year and am guessing it will be a real challenge with regard to balance. If Sunday is good for you let me know the best time.
Looking forward to chatting,
Wendy
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Debbi,
next MRI... "you'll have nuttin' up there" ;)
can't wait to see the next scan! Hang in there!
Phyl
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Hi Debbi,
WOW, what a tumor! It will be GONE, I am sure when you get a reread. Keep us posted, for sure. I too am getting to the time of my follow-up MRI. GULP! :o
I laugh everytime you mention Ethel, because of it being my middle name until I got married and quickly changed my middle name to my maiden name.
Take care,
Mary 8)
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Hey, Mary-
Great to hear from you! When is your follow up MRI? I think I would have been more nervous if I hadn't had surgery, since I pretty much knew that there wouldn't be anything to see at this point. I suppose in future years I'll be a bit more apprehensive. But, that is what they created valium for!
Meanwhiile, you reminded me that I never posted my AFTER picture, so here it is! Nothing but fat - HOORAY!
(http://i280.photobucket.com/albums/kk167/debifulco/99MRI1.jpg)
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Hi Debbi,
Your MRI is beautiful!!!!! Don't you love the fact Ethel is a goner? I am so glad that went well.
My MRI....hmmmmm.....I need to do that and I am dragging my feet. I am being TOTALLY opposite from pre-CK.
I have been such a dizzy dame at times, I really want to hear it is dying, but I know that takes time. I will promise you I will call and make the appointment so next time we post I can proudly say I was brave and called. November 2 will be my 5 month "anniversary" of Goldie being zapped.
Take care,
Mary 8)
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Okay, Mary - I have made a note that you are committed to calling the doc and scheduling the MRI!! Tic toc! (Can you tell I'm a coach - my husband tells me I am irritating as H*** when I do this...)
hugs to you!
Deb
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Awesome MRI Debbi! Yea! That has to be a great feeling, to NOT see Ethel there. ;D ;D ;D
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Yep, never thought I'd be so happy to see belly fat! LOL ;D ;D
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Hi Debbi,
I see the doctor on the 29th so he can order my MRI. ;) You motivated me......Good going, coach!
Mary 8)
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Good for you, Mary!! Make sure to put your MRI date on the calendar when you get it - I want to be sure to send cheers your way on the appropriate day.
Andrea, you are SO right - no more Ethel was such a good thing to see. You know, I named my tumor after Ethel Mertz in the old I Love Lucy show (which I know that Mary and I are old enough to remember... ahem). I was looking for the most benign sounding name I could find. Thinking about having an Ethel in my head wasn't as scary as, for example, a Cruella or a Fang...
Debbi
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Hi Debbi,
I always wondered why you named your AN Ethel -- now I know. Very interesting... and funny! ;D
Wendy
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LOL Debbi. I named mine Thing. Just an it, nothing fun. I did laugh reading on your blog about your "Ethel-ectomy" and I'm quite excited about my "Thing-ectomy" even though yours has a better ring to it. ;D Yeah, who knew belly fat in the skull could make you this excited? LOL!