ANA Discussion Forum
AN Community => AN Community => Topic started by: 4cm in Pacific Northwest on August 22, 2008, 10:39:13 pm
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Will you-all have a celebratory party with me today?
Today is my one year anniversary from my retrosigmoid AN surgery @ Stanford U. Today I got up and bounced on our kids’ trampoline to celebrate and even did a pirouette while lightly bouncing on the trampoline without loosing my balance. ;D It made me giddy to be bouncing like a kid again. :D More of my upper teeth started to show in my smile ;D , this past week … so I guess the healing part is still happening… and my happiness is now more visible to others. :) Even if my smile is still asymmetrical – it is nevertheless a smile here... one year post surgery.
What a journey it has been this last year. This time last year I was in bed- then in a wheel chair and having CSF leaking out of my nose. :-\ :P Just to turn a corner with the walker made me want to hurl :P …Oy ya ya - I thought my life had ended… :'( I doubted that my paralyzed face would heal :-\ or my balance would ever return to any normalcy ??? … and now I have a new founded faith mentally, physically and spiritually. Healing happened. :)
Now I am cycling, hiking, playing with the kids … and SO happy to have made it through that wild 11 hour surgery that required a pint of my own donated blood to be transfused back in... yup…a year ago today. I still have to go to bed at 9 pm but hey at least now I can sleep through the night- and the energy is increasing each month.
This evening I am even typing to you all without having to wear the stick-on-eye weight (however I still need it on occasion and dry hot days.) I am glad to put the 3M tape away that once held up the various parts of my face that drooped… and to have finally become unglued…
Speaking of “glued� - my family is glued to the Olympics on the TV- just now. I may not be able to have a big old real big party with my family tonight – but I bet I can have a big ole virtual party with my AN family…
Who of the old timers wants to come?
Ann Marie- are you out there with some carrots sticks?
Satman Super 8 can you bring an 8 ball ... ?
Scotty can you beam us up to your enterprise?
Steve can you radiate your sunny position onto the party?
Joef can you bring a kayak full of fish bait?
Captain Deb – I tossed out my old eye patches out in the wind - maybe you can bring some for the newer drunken sailors that need them.
Pearly Whites can you bring some hot buttered popcorn…
Marg – bring your bike we can attempt doing wheelies together…
Jeff – I just want to give you a big old HUG for being such a role modeling hero (It is official - I got my library post today!).
Nancy – bring your always think “positive thoughts� motto. Hmmm who else the old timers do we need to invite… that I am forgetting? Lorenzo- coffee? It is time for a party!
MMM Where is Boppie?
How about the newbie’s? Do you think they might find us all too wild or will they come to appreciate the Acoustic Neuroma journey that we have- together?
Life is to be celebrated!
Moving forward! Who wants to join me?
DHM
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Gee chucks- thanks all!
Newbies
Sue L ,
Some days we do not realize how many people are lurking. I got to feeling that the AN journey needs to be shared- both the down turns and successes. Hopefully people who are affected from AN tumors can learn from our experiences- and even our mistakes. Because I was a teacher for so many years- I always feel every experience is a learning experience. Thus I always throw in reading materials (i.e. links) as I used to assign (hopefully meaningful and not busy work) “homework� to my students. Some one is going to glean something from that information and take it into their future experiences and decision making.
Nancy L
I see you are still only a few months out… I remember at that stage that chocolate (of all divine foods) and coffee tasted just putrid. Just know that neurological healing is much longer than say -a knee surgery- as it takes longer for nerves to regenerate and the brain to compensate to retrain.
Exercise
One thing I did was make sure that I got out and exercised for 20 minutes a day. At first it was with the walker and fighting to keep my stomach down when I did so much as turn a corner. I also had to exercise as all those post surgery meds just plugged up the plumbing and I had to move and shake things up (I’ll bet all post surgery AN’ers know exactly what I am talking about)… from there I never stopped and started to get in miles either walking, on a bike, hiking etc.
Reaching out to others
I also learned to do something new …and that was to reach out to others. Teachers can be the worst as we reach out to help being that we are trained to do this -but are not always so good a receiving help. I became helpless after surgery and I had to learn quickly to receive help. I had many sleepless nights when I felt rather isolated and asking,
“Why me?� What did I do to deserve this darn tumor?�
And why does the crumbling of a paper or plastic bag sound so darn loud?�
At 3am I often could not sleep, was in my PJ’s, hair all a mess and I got on line to talk to my ANA buddies here. Lorenzo is on the others side of the world in a different time zone- and was often there to respond - as were others that read my posts once when they got up in the morning. I also learned to reach out not just to the local ANA community by attending meetings but I also reached out to neighbors and friends to request their help -with my caring for my family. The kindness of people and the human spirit never seizes to amaze me. I knew that I had to adopt the “pay it forward� attitude. I want to help others recover too.
“Keep moving forward�
Last summer my kids insisted we take them to see “Meet the Robinsons�. Here is the synopsis.
http://en.wikipedia.org/wiki/Meet_the_Robinsons
My husband and I do not have extended family; close by, that we can count on. Both of us struck out to independent adulthood at a very young age due to our own parents going through marriage breakdowns. This film is about a kid who did not have the basic fundamentals of family support in his childhood… Throughout his life journey, even the trials and tribulations, he always repeats the motto to himself “Keep moving forward�- which later becomes a company motto in his successful invention business.
This became my motto in the AN journey.
“Keep moving forward�
Nancy L – I am so glad that you could glean something useful from my posts.
I have been on the forum less and less as I need to put more time and energy into being with my kids and making up for last summer -being that I was SO immersed in researching out a good surgeon and then into recovery. I feel they were neglected by me. I need to get back out there, move forward and enjoy my kids before they are grown up and leave the nest. Having my life flash before my eyes, last summer, made me realize just how precious life is and the quality time spent with my children is. Life is to be enjoyed and yes celebrated!
I think we shall party and celebrate into the weekend – shall we? My AN family here is SOOH awesome. :)
Cheers,
DHM
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I would like to jump on the trampoline with you but after having three children I might pee my pants. :o Michelle ;D
:D :D
Truth is I planned for the pee leaks before I got on the trampoline. Hey I would rather have pee leaks than CSF leaks any day. Don't let a little leaky pee stop you from bouncing like Tigger from Winnie the Pooh. (Uh oh pee and Pooh talk... To think I always tell my kids “no bathroom talk at the table!� – and here I am, on line, doing just that…) :D Anyway I had 2 kids. I am determinate to do the Kegel exercise to stop this problem.
I understand it is from the Urethral sphincter muscle being damaged either during pregnancy or @ childbirth.
http://en.wikipedia.org/wiki/Urethral_sphincter
I also understand that there is HOPE for this problem… if one is willing to work at it. :)
Here is a good article
http://www.seekwellness.com/incontinence/pelvic_floor_muscle_rehab.htm
"Kegel exercises: How to strengthen pelvic floor muscles"
http://www.mayoclinic.com/health/kegel-exercises/WO00119
To add to my therapy hours and work
vestibular therapy
Neuromuscular facial retrain therapy
... now "Urethral sphincter muscle therapy"-
Gee look what year #2 in the journey will bring – new adventures! LOL
I am not going to let that nasty sticky ole AN tumor take the bounce out or me …or a little leaking…
Ok who wants to set up a trampoline on the grounds of Mc McMenamin's (the Grand Lodge has a huge lawn for this) and bounce along with me…
(“The Grand Lodge?� you ask)
http://www.thegrandlodge.com/index.php?loc=59
So far we have:
dark chocolate
a Nespresso machine
freshly-popped, hot, buttered popcorn and martinis for all with Frozen strawberry (with salted rim!)
a kayak full of fish bait (for Hagg Lake is not too far from McMenemins Grand Lodge & very doable)
“Hagg Lake??�, you ask http://www.co.washington.or.us/deptmts/sup_serv/fac_mgt/parks/hagglake.htm#Where
carrot sticks
tiramisu to enjoy with Lorenzo's espresso
chicken fajitas on soft tortillas, and some hot jalapeños, and guacamole, margaritas on the rocks,
a half dollar piece and duct tape (too hilarious LOL :D )
kicking home brewed beer
Looks like this is turning into one interesting pot luck party we are having on the lawn of the Grand Lodge - with the trampoline ;D set up. This is getting more and more fun (& funny) by the moment.
Ok who else is coming and what all are you bringing?
DHM
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DHM:
I received your PM the very day I set off on a seven-day out-of-town vacation (Disney World, Orlando, FL) and I never saw it until today. I apologize for missing your party. I'll simply add my congratulations on your amazing journey of recuperation and your indomitable spirit throughout the past year. The virtual party celebration was both innovative and fun. I've enjoyed reading the many exchanges. They've brightened my day as well as heightened my appetite. :)
May your healing continue apace. Thanks for your many contributions to the forums. You are appreciated by all.
Jim
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Gee Jim,
Where did everyone's post go to? They all disappeared... :-\ ???
DHM?
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DHM,
The posts are all sitting in the "Recycle Bin", a hidden topic that stashes deleted posts. I have no idea how they got there. ???
We may have to contact one of the tech people to see if they can tell what happened, and to try and restore the posts. Or maybe another moderator knows something I don't know. I doubt much will happen before Tuesday, though.
Steve
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Well gee :-\ we were having a fun party… lot of posties contributing... up to 4 + pages. Now it looks, in the thread, that I am only talking to myself and it now makes little sense :-\ … not to mention it makes me feel just ever so lonesome… to be having the party by myself. :-X :'(
DHM
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What happened????? This was hardly moved to 'Recycling' automatically? 'Recycling', lol WEIRD! I for one would love to know how it all got put into an inaccessible thread. ANA Admin? Hello? :( I can only presume this is some gremlin / mistake / hacker. After all this category is supposed to be for this kind of interaction.
OR, somebody didn't like the menu and the wines on offer.
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Very strange ... I'm just as baffled as you ???
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we're looking into it now.
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I am going through withdrawal…
No hot buttered popcorn, no dark chocolate, no Peet’s coffee… I did not even taste the popcorn...
WHO crashed my anniversary party? What happened to all my buddies- they disappeared?
We did after all move the party from the McMenemins Grand Lodge of Oregon to Italy. And what happened to the kayak full of fish bait? Did the customs officials not like the fishing bait idea? What about the Tiramisu and carrots sticks?
Did that party crasher eat ALL our delicious food too?
HMMMMPH! ???
DHM
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maybe the system had indigestion?
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DHM~
I'm still here with the chocolate...wasn't that what I was bringing?????
K
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maybe the system had indigestion?
as long as it didn't belch in my direction.....
Oh, this and that happened.... person(s) responsible will walk the plank on the PBW.... :)
Phyl
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LOTS of Alka-Seltzer
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LOTS of Alka-Seltzer
I prefer Promo Seltzer! :D
xo
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not familiar with that version of seltzer. is that pro or anti indigestion? :)
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Wow, I take a break for a couple of days and all mahem breaks out! What the heck??? DHM, I'm still here, with food at the ready! I have a new recipe for Eggplant Parmesan that I tried last night - it was fabulous and even healthy since I grilled the eggplant rather than frying it, and used home made sauce with fresh garden tomatoes... I can whip up another batch!
Let's continue this feast and celebration right into the fall, shall we? My first MRI is coming up next week, so more reason to celebrate (I hope!)
Party on!
Debbi
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I'm all for it!! I found some new pork sausages here that are just fantastic! And my lettuces are ready to eat too.
Lets keep going.
:)
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DHM,
I love to make (and eat) desserts so I thought I'd make a Black Forest Torte. Lots of chocolate, cherries and whipped cream for everyone's sweet tooth!
Debbi - I never tried making eggplant parmesan with grilled eggplant -- it sounds yummy!!! What day next week is your MRI?
Wendy
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Okay, Wendy - you got my attention with the black forest torte - I'm IN!!
BTW, the MRI is next Tuesday afternoon. I entered in on the calendar. I'm looking forward to seeing what it looks like now, with the booger gone! (Well, almost gone, since they did leave a few nubs behind)
Debbi, biding my time, celebrating my wedding anniversary today
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another reason to party! Anniversary, MRI... never ending reasons for celebrations! :) I think I'll make a few swiss style fruit tarts for dessert, for the non-choc people. Do those exist? although Black Forest Kuchen for me sounds just perfect! :P
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It was “Scotty� who beamed everyone up onto the enterprise leaving me behind, and ALL ALONE, - who ate ALL our party food… He apologized profusely to me once he realized he hit the wrong “beam me up� button… (I.e. he had technical difficulties ;))
As long as I get those cool glasses that LeVar Burton wore on Star Trek,
http://en.wikipedia.org/wiki/Geordi_La_Forge
from old Scotty, as my anniversary present, - 8) THEN I can forgive him. :-*
I plan to wear my cool treky glasses!
Now that it a dress as your favorite character party, down here on planet earth, -what are the rest of you wearing?
We have some food again so the party is still on.
:D ;D DHM
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Thong sandals, some nice carpi's and an animal print top......I just dressing up as myself! I'm still bringing carrot sticks and tiramisu!
Anne Marie
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as for me it'll be various shades of grey linen and funny leather shoes. i'm dressing up as a designer. Oh, hang on, I AM a designer! :) Might wear something with colour. Muted. :) That should counter balance the other looks. LOL
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Hhmm - not sure what I'll wear, but it definitely won't include high heels! And, since it is still plenty warm in the NY metro area, it will include thong sandals ...
Debbi, looking forward to Anne Marie's torte and Lorenzo's pastries
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Debbi -
Happy Anniversary!! Compared to Rob and me you and Willie and are newlyweds, we had our 23rd anniversary on July 28. Too bad we had to celebrate in the hospital -- no champagne. Congratulations!! Hey, that's what this party needs, lots os champagne!!!
Wendy