ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: cindyj on November 23, 2008, 06:00:43 pm
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Hi ALL!!!
Boy, I hope everyone is ok! Have missed being here, but my eye just is not cooperating enough for me to read and/or type for any length of time. I had so wanted to chronicle my little adventure like so many of you other posties did, but just couldn't seem to do it...
Anyway, I made it home on Wed and am feeling much more like "me" now...the new me, I guess. I am assuming things will continue to change in my head for awhile, so I'm not too concerned about how strange things feel in my head and ear right now. Whoever described it as like a tennis ball in the head, was exactly right! The SSD is not as bad in some ways as I was expecting, but in other ways, it is more annoying than I was expecting. Again, I assume this will all change somewhat over the next few weeks/months, so I'll hold off judging til later.
My energy is coming back pretty quickly, I think. I'm down to a nap in the morning and one in the afternoon which is a huge difference from just last week when I could barely get off the bed in the hotel room!
Wonky head is in full force, however! Know this will take time, but this and my dry eye are my biggest complaint, if I can still complain awhile...My face is starting to tingle at times, so I suppose the facial nerve is trying to correct itself. Definitely have the pirate smile going! But, I know I am very fortunate to be doing as well as I am. As I think I mentioned in my first post back (no telling what I said in that one), I have been walking without assistance from the very beginning and never feel like I'm in danger of falling. However, I did get on my Wii Fit last night and found out very quickly that my balance is indeed VERY off! I will start doing some of the excercises/games on there next week, hopefully.
Well, anyway, I just wanted to say "hi" and let you know I'm doing well. I do hope to write up something with more details about my days in the hospital at some point - in hopes of helping the pre-posties out there. All of the surgical accounts out here helped me so much as I was laying in the hospital - I knew that everything I was going through was normal and many, many of you had been in the exact same spot and made it through beautifully.
Once again, thanks to ALL of you here for all your support this year and throughout my hospital stay. And another big thanks to David and Mathilda for taking time to meet with me prior to surgery - it meant so much to us...and a HUGE super thank you to my wonderful tour guide, Nancy! She made my trip to LA one that I will remember as special in so many ways having nothing in the world to do with surgery!
Hugs to you all,
Cindy
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Cindy~
Glad you are back home safe & sound and doing well!
K
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Hi Cindy,
Welcome back! It is great that you are over the fatigue, and can participate in the daily activities now. As you know, it is one day at a time for a while. From other posts, I gather there are various milestones, including the 3 week wall, the 6 week wall, etc. where it seems like recovery has stopped, but then it picks up again. Be a patient patient!
Take your time on the big blog, we would like to have it, but your own recovery comes first. It does sound like the LA reception is really good, I wonder if they can keep that up all the time? Best wishes to you,
Steve
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Cindy,
Welcome home -- sounds as though you're coming along just fine! Keep up the good progress, but don't overdo.
Catherine (JerseyGirl2)
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Cindy,
Gllad to hear you are home and doing well. Being as active as you are comfortable being is a good idea, but don't push too hard. I look forward to reading about your progress in the coming weeks. In the meantime, now htat you're home I hope you have a Happy Thanksgiving!
Best wishes for a speedy and uneventul recovery,
Wendy
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Welcome home, Cindy! It sounds like you are doing great - even with your new "altered reality." It does take some time to get used to how the world feels and sounds post surgery - give yourself time and don't overdo it!
Debbi
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Hey Cindy!
So glad to see you posting from the comfort of your own home! I'm glad your energy is starting to come back - just remember that sometimes it's hard to judge how much you have - or "don't" have. ;)
I'm so happy the "tour" helped you come home with images of LA beyond the view from St. Vincent's. (Which isn't bad from a west-facing room.:))
Looking forward to hearing more when you're able. Please say hello to your mom & Brad, too.
Take care and have a wonderful Thanksgiving - I hope Brad's cooking this year!
Nancy
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Welcome home Cindy and congratulations on what sounds like a good recovery. Take it easy on yourself.
Best,
Marci
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.....Rising up on the balls of feet, clicking heels together three times
THERE'S NO PLACE LIKE HOME, THERE'S NO PLACE LIKE HOME!
Welcome back, so very happy for you! Enjoy your life and the new you!
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Welcome home, Cindy--there ain't no place like it! Glad you made it through surgery with flying colors and no big bugaboos. Dr Rick is the best! And a real cutie too, n'est, pas?
So rest up, heal, and let someone else overcook the turkey this year!
Big Hugs,
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate-smiley-12.gif)
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Thanks everyone!
Well, I'm seeing what you all mean about watching out for the fatigue...today I have done nothing but nap and eat - amazing to me. But, I'm going to try to just not fight it. Steve, I'll be watching for those "walls" you mention as well.
Brad thinks my eye is working a bit better, but I can't tell any change. And while my mouth still isn't working right, I am managing to stuff plenty of food in there :D
Cindy
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Welcome home from 1 Georgia peach to another. My thoughts and prayers are with you.
Grace
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Eating is a good sign! My mouth still doesn't work right, but that doesn't stop me from eating most things (except sandwiches ...)
Debbi, sending you good thoughts
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Hi, Cindy:
Great to learn that you're home and that your recovery seems to be moving right along, although its never as fast as we would like! I suspect you'll regain your balance and that the other issues will subside in time, as they usually do. I've long maintained that AN patients recuperate faster at home than in the hospital, but I assume that's a fairly common belief. The increase in your stamina is also encourging but don't be lulled into assuming you can immediately do eveything you used to do. Pace yourself. I'm pleased to learn that the forums have been such a help to you, Cindy. That's their purpose. :)
I hope you'll have a pleasant Thanksgiving and we look forward to your posts, whenever and in whatever form is convenient for you.
Jim
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Cindy,
It is so good to hear from you. I'm glad you are back in Georgia. THere is no place like home. Rest, rest, rest. I hope you and your family have a wonderful Thanksgiving.
Susan
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Hope all you US folk had a nice Thanksgiving! We went over to my sister-n-law's house for dinner - I didn't have to do anything but show up, so it was very easy for me...there were about 20 or so people there, however, and it was pretty loud and confusing for me, but I did better than I thought I would. Was nice to get out and be almost normal!
Took a nice long walk today with Brad - a beautiful day down here - pretty dizzy, but did ok. My biggest complaint today is a mouth sore that developed a few days ago - think it's from the weird way I have to eat w/ my facial weakness...the eye is still troubling also, but I know this could take weeks or more to resolve itself...being very patient...I think. Curious - how long does the ear stay numb and stuffed feeling? I'm guessing quite awhile???
Donnalynn, no worries about food around here. A friend of mine set up a page on some website where people could sign up to bring me meals. Think I have food coming til the middle of December! How great, huh! I'm very lucky to have so many great friends!
As always, thanks, everyone!
Cindy
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Well, I'm one month post-op today - can't believe a whole month of life has gone by, but if I look at how far I've come in the recovery process, it seems like an incredible distance. Everything is relative, right? Compared to 4 weeks ago, I am doing fantastic! Still have a ways to go, but I'm pleased with where I am today.
I went to the eye doctor yesterday about my eye that was really bothering me. He recommended Systane drops instead of the Refresh I've been using, gave me a prescription for Restasis, tape to tape my eye shut at night (would like to tape it most of the day actually, but he said to NOT do that), and finally, he plugged my bottom tear duct with a tiny piece of collagen...in hopes that the tears would go to the top tear duct and overflow from there...didn't really make sense to me why that would work, but I was all for trying anything. This is just a temporary measure til the Restasis takes effect. Will let you know if these measures help.
Still wonky-headed, but hopeful. Based on my Wii scores on some of the balance games, my balance is getting better, though - love that slalom ski run! But, I'm pretty awful at those yoga poses...
Last comment, and I know I'm feeling better to even bring this up...I can't get over how long my belly scare is, yet they obviously didn't take very much fat out of there as there's still a good portion there! I had assumed that incision would be just an inch or so at the most...Also interesting that I can barely see my head incision any more, but the belly one is very evident. Not complaining, just noting :)
All in all, I feel quite good...and very fortunate. Thanks (again) to all of you and your support!
Cindy
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Hi Cindy,
Wow! It sounds like you are doing great!!! Hope the collagen plus has helped with your eye problem. I've read that WII is great for balance but have not tried it myself. Does it affect the wonky head issue in either a positive or negative way? I've been toying with the idea of getting WII but this is one of the things that has made me heistate since too much visual stilmumation is what sets it off for me.
Wishing you continued good healing,
Wendy
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Cindy,
Sounds as though you are doing amazingly well at one-month post-surgery!!! I hope your eye and balance issues improve soon -- I would imagine it's just a matter of time, hopefully sooner rather than later.
And you're correct -- if you're even thinking about your abdominal scar you're well on the road to recovery from the more important issues. My scar is about 2 inches long and, at 11 months post-op, still quite noticeable. I didn't bother using any kind of anti-scarring stuff on it since I'm beyond the point of wearing anything that low-cut. It provided some laughs during my annual gynocological exam last spring when my doctor asked, "what's that scar from?" and I replied "my brain surgery!"
Best wishes for a continued speedy recovery, but rest when you need it and expect to hit some plateaus along the way.
Catherine (JerseyGirl2)
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And you're correct -- if you're even thinking about your abdominal scar you're well on the road to recovery from the more important issues. My scar is about 2 inches long and, at 11 months post-op, still quite noticeable. I didn't bother using any kind of anti-scarring stuff on it since I'm beyond the point of wearing anything that low-cut. It provided some laughs during my annual gynocological exam last spring when my doctor asked, "what's that scar from?" and I replied "my brain surgery!"
Catherine,
When I read this, I laughed so hard I cried and almost fell out of my chair! :D :D :D I told my sister what you said and she laughed till she cried too!! I can just imagine the look on your doctor's face!! :D :D Thanks for the laugh!
Cindy -- Sorry for the hijack!
Best wishes,
Wendy
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Wendy, I think the Wii Fit is great, but couldn't say whether it might cause you additional wonky problems...for me, it doesn't bother me near as much as going outside and/or in a store does. Don't know that it's helping anything, but I feel like I am at least doing something physical finally!
Catherine, that is a great story about your scar - I must remember to use that when anyone asks about mine! Mine is about 4 or 5 inches...yours is 2? Think the surgeons slipped on me or something ::)
My eye is no better so far. Part of it may be that I am reading a good bit now - don't think my eye likes it a bit - but I HAD to finish that Tell No One book that Jan recommended.
I think I am goiing to try to drive up the street in the next day or so - can't stand being captive in my house. Scary, but it has to be done!
Hope you all have a great week!
Cindy
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HI CINDY,
I AM TAMMI, NICE TO MEET YOU! I SEE WE ARE NEIGHBORS... I GUESS I AM ABOUT 1 HR AND 15 MIN NORTH OF ATLANTA. I AM GLAD TO HEAR YOU ARE DOING WELL! ;)
KEEP UP THE GREAT ATTITUDE, THAT IS THE KEY TO A SPEEDY RECOVERY!! HOLLER IF I CAN DO ANYTHING TO HELP!
TAMMI
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That must be it, Donnalynn! Dr. Friedman and Dr. Schwartz signature scars!
And, hello, Tammi! Nice to meet you too. Where are you north of Atl? Can I assume you are toward the mountains since you had your surgery in TN? Was your surgeon that famous one I've heard about that is quite up there in age, but still perfoming amazingly well? I know the ANA is trying to get an Atlanta support group going again - perhaps we can meet at some point if it works out.
Well, I have been driving a bit - rather unnerving, but not too bad. I try to just go straight and not turn my head left and right too much or back up...I'm careful, I promise!
I finally got rid of my grey roots last night - please tell me that was ok! I remember reading some posts about some of you waiting for some length of time to color...I couldn't remember what that length of time was, so I just did it. Seemed ok since my incision is closed up, right???
Ok, the eye is telling me to get off the computer - talk w/ you later,
Cindy
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Cindy,
You're fine with your root job! I think most doctors say to wait a month, so per the surgery date in your signature you could have colored several days ago and survived to tell about it. And the head-turning while you're driving will get better with time. One day it will hit you (maybe "hit" isn't a good word to use when discussing driving) that it feels absolutely normal to drive again.
Catherine (JerseyGirl2)
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HI CINDY ;)
YES, I WOULD LOVE TO MEET YOU SOMETIME! I CAN'T DRIVE RIGHT NOW, BECAUSE OF SEIZURES, BUT THAT WILL BE MY XMAS PRESENT BECAUSE I CAN START BACK ON THE 21ST AFTER 6 MONTHS! I AM SO GLAD TO SEE YOU ARE DOING SO WELL!! ARE YOU STILL ON THE STEROIDS? I COLORED MY HAIR AT 7 OR 8 WEEKS.. JUST THE LITTLE ROOT TOUCH UP KIT THOUGH. I AM SURE YOU ARE FINE. MY DR. SAID TO KEEP IT AWAY FROM YOUR INCISION.
I LIVE IN RINGGOLD, GA. ABOUT 15 MIN AWAY FROM CHATTANOOGA, TN. I HAD MY SURGERY AT VANDERBILT IN NASHVILLE. DR. THOMPSON AND HAYNES DID THE SURGERY. THEY ARE MID FORTIES I GUESS??? THEY ARE REALLY GOOD AND VERY SWEET!
I DID NOT DRIVE FOR 3 MONTHS AND IT WAS VERY SCARY! I REMEBER THE HARD TIME I HAD TURNING MY HEAD... YOU ARE DOING GREAT! ;)
I UNDERSTAND THE EYE HURTING WHEN YOU ARE ON THE COMPUTER... I ALWAYS HAD TO TAPE MINE UP OR GLOB IT UP!! ::) JUST DON'T LET IT GET DRY WHAT EVER YOU DO.. I READ ON HERE ONCE ABOUT A GREAT IDEA AND IT WORKED SO WELL FOR ME. SOMEONE SAID THEY GOT A SWEAT HEAD BAND AND PUT IT AROUND THEIR HEAD AND COVERED THEIR EYES WITH IT WHEN THEY WENT TO BED. IT WORKS SO GOOD!!! BEATS PUTTING ALL THE TAPE ON AND OFF AND PULLING AT YOUR DELICATE EYE AREA, CREATING WRINKLES ! I WISHED I HAD READ ABOUT IT SOONER. JUST MAKE SURE IT IS NOT TOO TIGHT AROUND YOUR HEAD AND ON YOUR INCISION.
I WISH YOU WELL AND A WONDERFUL HOLIDAY SEASON! I JUST CELEBRATED MY 1 YEAR POST OP AND I AM STILL MOVING FORWARD! ;) HAVE A GREAT DAY!
TAMMI
~I AM NOT EXACTLY WHERE I WANT TO BE , BUT I AM NOT WHERE I USE TO BE. THANK GOD! ~
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Cindy,
Since we are having similar "wonky head" experiences I thought I'd give you an update on my condition and what my surgeon had to say.
I had my 4-5 week checkup with Dr. Smouha (one of my two surgeons) this week and he said he expects my "wonky head" problem to go away within a few weeks. I'm not sure what he based that on because it seems to be a more persistent problem for many people, but my balance is otherwise pretty good. So maybe that had something to do with it. It could also be that most people recover fairly quickly and we just have a concentration of people here that didn't (unfortunately). Perhaps those that got over it quickly didn't bother asking questions or complain about it here because they had other issues. I just hope he is right and that everyone else gets better quickly too.
Besides saying it is not unusual post op, he said the problem is the coordination between my eyes and my remaining balance nerve(s). He didn't call it "wonky head" or anything like that, but he seemed to be very familar with it. He suggested getting out often, walking, and even riding the bus because the stimulus of a bus ride might even help prepare me to drive.
As a visual exercise he suggested that I draw the letter "B" on a piece of paper, put it on the wall, and move my head left/right and up/down while remaining focused on the letter. I'm not sure if any of this will help me. So far I'm not improving much (if at all) in the last few weeks, but I remain hopeful and will follow his instructions. I have another visit with him in 3 months and one with Dr. Post in about 2 months.
Keep me/us up to date.
Wayne
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Cindy,
Here is an idea for the eye that my eye doctor suggested. He said to cut a square of plastic wrap (the kind you use in the kitchen) big enough to cover the whole eye area and tape to forehead and cheek. I'd say about 3 1/2" square. Lubricate your eye really well at night and cover area with plastic wrap. Tape to forehead if necessary. Mine would just stick. It forms a moisture chamber for the eye. I would feel instant relief. So much that I would even wear it in the day to keep from drying out. He said with tape you risk having the eye open and the tape scratching it. It felt sooo much better!
Tammi (Faith40) - I'm from Rome, GA so we are neighbors as well.
Hope that helps Cindy. Glad you are feeling better.
Susan
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Thanks for the reassurance about the hair color! Boy is it nice to have the grey gone!
Tammi and Susan, even if the ANA support group never comes to pass, perhaps we can all get together sometime. I wouldn't mind heading over toward your way - maybe sometime after the first of the year...bet we could get a few others as well...And thanks for the eye tips. Think I'll try covering it the next few nights to see what happens.
Wayne, that exercise with a letter on the wall has come up before, must be a good one. Guess I should try it. I've been driving a bit each day - went in Wal-Mart today - not as bad as I thought it might be. Let me know how things continue with you!
Have a good weekend all!
Cindy
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Cindy,
I did a local drive today also. It really wasn't bad at all except when I came to an intersection/stop sign and had to look both ways quickly before continuing. The quick movement of my head back and forth "wonked me". LOL I had to be more careful in those situations. But I didn't feel at risk driving and wasn't putting anyone else at risk either because of my heightened caution. I certainly don't think I'm ready for highway (or in my case Long Island Expressway/Grand Central Parkway) driving or even driving in very busy neighborhoods in NYC, but I can certainly take quick runs to the supermarket or shopping center using local streets if I have to. Baby steps. ;-)
Wayne
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CINDY,
THAT SOUNDS GREAT! ;) I AM LOOKING FORWARD TO IT!
SUSAN,
YEAH !!!! ANOTHER NEIGHBOR!!! ;) CAN'T WAIT TO MEET YOU TOO!
YA'LL HAVE A GREAT WEEKEND !
TAMMI
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Hi Cindy and Wayne
Congratulations on the milestone of driving -- it's a big one! I'm sure even though you're not driving far it feels good to get some independence back, I know it felt that way for me. You should celebrate all victories, big and small!
Wishing you both continued good healing,
Wendy
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Hey Cindy!
I'm just trying to catch up on the forum and see you've been driving! Yippee! It's a great feeling - well, maybe not the first time...but a little easier every time behind the wheel. Sorry your eye seems to be giving your problems, but it sounds like other than that you're doing really well!
About the tummy scars - since I had the same docs as you and Donnalynn, I got curious as to the size of my scar...so I measured it. Mine is just over 1 1/2 inches long - so the only logical explanation is that I had MUCH more fat available! :D (Though I think I can make out the "z" from the end of Schwartz. ;))
Sounds like you may have a Georgia get together pretty soon, too. If you do, be sure to post your pics!
Take care and feel good,
Nancy
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Ok, I finally got my post-op Magic Scarf picture out of the camera, on to the computer and uploaded to Photobucket! But now I can't remember how to add it here in a post - I tried searching for directions that I know others have put out here, but having no luck tonight. Can someone please tell me again...sorry!
Nancy, yes, it has been great to be back behind the wheel again! I've warned all of my neighbors to watch out for me, though! Wayne, I would be afraid to drive up there in your area even without wonkiness! Be careful!
Cindy
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Jan just posted her instructions for posting photobucket pictures in the "Pictures of Friends" topic:
http://anausa.org/forum/index.php?topic=8049.msg89062#msg89062
Steve
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Here's a seven day post-op Magic Scarf photo...finally...thanks Steve and Jan for your technical assistance. This is the day I escaped back to the hotel - I was waiting for the taxi in the hospital lobby. Didn't know Mom would whip out the camera at that moment or I would have worn a matching leopard print shirt ;)
(http://i447.photobucket.com/albums/qq195/cindyj312/100_0267.jpg)
I signed up with a local gym this week and get a free session with a personal trainer tomorrow. He "evaluated" me yesterday and will give me a workout plan tomorrow. He had me do push-ups (girly kind) yesterday - I could only do three, yes three. But, I'm feeling those three today and know I'm going to be very sore after working w/ him tomorrow - but I'm looking forward to that soreness as I know it's a sign that I'm getting back to normal. Driving last week, gym this week, maybe tennis next week??? We'll see...
Cindy
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Cindy,
Glad to see you are doing so well. Did you get permission from your doctor to do more vigorous exercise? How is the wonky-head?
I had a great day on Saturday. I went shopping at a huge mall, out to dinner etc.. and felt the best I have yet. But since then I had a couple of really bad days. My balance was actually much worse Sunday and Monday; it got a touch better Tuesday and I guess I was back to where I was before on Wednesday. It's very frustrating to feel not progress in the way I feel, just in what I am willing to do to test myself and return to normal living. I wish I saw just a little progress, but I have to say the last 3 weeks I am exactly the same after making huge progress the first 3 weeks.
Does anyone know how long you are typically supposed to wait before starting more vigorous execise than just walking?
At two weeks I was told I could walk as much as I iiked but to wait a few weeks before doing anything more vigorous. Dr. Smouha didn't seem to have a strong conviction about how much I could do and settled on riding a stationary bike for now. He seemed to defer to Dr. Post on that. I'm not doing much yet other than walking (a real lot), but at some point I'd like to test myself a little even if my balance is still off.
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Why is it we like to see photos so much? Don't know, really, we just do. :)
You do look well for being 7 days post-op. I would have guessed you could do at least 5 of those girly push ups. :D
Steve
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Well, after seeing Ken's Magic Scarf fashion statements, I feel very frumpy ::)
Wayne, no, I didn't exactly get permission to start working out ;) but I wasn't told not to either...my post-op instructions were to basically do NOTHING for a month. The instructions were "silent" about what I could do after that, so I'm taking that to mean I can do whatever I want to do...hmmm, I hope I didn't miss anything...I've always been one to "push the envelope" as far as post-op instructions go, but this time I've been pretty well behaved, I think. I will be careful, though. The trainer I'm working with today knows I've just had the surgery and about the wonkiness - he knows I will have to go quite slowly at first.
Hang in there, Wayne - I, like many others, have days are that are worse than others as far as the balance/wonky head goes. Know what you mean about the first 3 weeks, when progress went much more quickly, and now it seems much slower. But, we are making progress!
Steve, my goal today is to do those five push-ups!
Have a great day all!
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Cindy you look great! I didn't look that good for .... well I'm not sure I look that well yet. I wish I was further south and I'd work out with you. You go girl. If there is no danger in the workouts keep up the push ups. (I didn't get any precautions about that either.) I noticed this weekend when I tried to pull the Christmas tree out of the attic that I have ZERO upper body strength. Not sure where or when it went but it is gone. Had to bring it down in sections. I've got to start some kind of strength work out myself to get it back. I'm single and there is no husband around for the heavy stuff. My son is leaving in January to move to Texas so it is up to me when it comes to lifting stuff.
Good to see you are feeling better.
Susan
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SUSAN AND CINDY,
HEYYYY HAPPY NEW YEAR! ;) HOW ARE YA'LL DOING? LET'S GET TOGETHER SOON!!! I CAN DRIVE NOW!!!!!!!!! ;)
TAMMI
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Hi all,
there were some posts here (after this last one from Faith) about a local get together in the Atlanta area. I've taken the posts and merged them in a post started by CindyJ in the AN Community forum, so all would be noted there.
BTW, if you all get together for breakfast... Awful Waffle sounds good! Love them grits there! :)
Now back to original topic...
Phyl