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Susie*Bee
05-04-2015, 08:23 AM
Hooray! Today is the 8th anniversary of my surgery date. It's funny how you can still conjure up those surgery memories and emotions at the mere thought! Yikes! So glad to have it behind me and the long recovery over with. I always posted how some have a s-l-o-w recovery because mine was one of those... but life is good and each year post op gets better and better.

I have been doing so well over the years-- back to the turtle analogy, slow and steady... some of you may remember I was diagnosed with Charcot Marie Tooth disease recently and have balance issues along with other problems. In January I lost my balance and took a really hard fall. I twisted and hit the back of my head and did a number on my back. I have been having some very sharp pains intermittently in the mid scapular area ever since. I will try to tough it out unless it gets worse. I go for a scoli check up in another year. I recently had PT for my CMT and we worked on balance, but it still helps to have something not too far away to grab hold of... or at least to put my arms out and "fly" for balance at times.

I am so excited to have 8 WHOLE YEARS UNDER MY BELT! Whoo hoo! For you "newbies" -- I think those surgery memories are kind of like having a baby to some of us but you just never forget the experience of your surgery unless you were so doped up. Ed was... I wasn't. I remember my time in the hospital totally! What my nurses looked like. The really nice ones, the one mean one. The two "fellows" - Dr. Brasher and Dr. Cahill (who later worked with Dr. Betz), having NPO (no food or drink) because of an ileus for 5 days and wishing I could at least have something to drink. My husband was there for part of the time, but also gone quite a bit-- work (and home) was over 2 hours away. I got along fine by myself. It depends on the nurses at your hospital. I remember my whole hospital experience like it was yesterday. My surgeon was very caring. Now that he is only at Shriner's in Chicago, I miss getting to see him!

My very best to all of you who are starting out or are somewhere in between. It is always a roller coaster ride. I have watched the forum and its ups and downs for about 7 1/2 years now and have seen the life experiences of so many scoli people as they come and go. And have made so many friends. Cheers to all of you that remain, and best wishes to all of you who read this. Life is a journey and scoliosis may be a part of it, but so are many other joys and challenges. We are strong - and don't ever forget that! Take care!

mabeckoff
05-04-2015, 09:39 AM
Susie,

You were so wonderful to me when I had problems. I hope that all work all well for you

Melissa

jackieg412
05-04-2015, 01:04 PM
Susie we never forget somethings. But as you say it does get better. On my anniversary date I write a thank you to the doctor. But I should include my family, friends everyone here and myself for having the courage to go through it. By the way, I went to university of Chicago with this recent problem. They were great but we are still working on it.

PeggyS
05-04-2015, 09:42 PM
Congrats on 8 years, Susie Bee! What an inspiration!

titaniumed
05-04-2015, 10:43 PM
Suzie, I think you were the first to respond on my initial introductory thread, back when I was just starting to feel good. Yes, it was very rough for me the first few months, but it all came around quite well. Couldn’t have expected any better actually.

I have enjoyed reading your posts over the last 8 years....

Congrats on 8 years.....

Ed

Susie*Bee
05-05-2015, 07:06 AM
Thanks Melissa, Jackie, Peggy, and Ed! Yes, it's been a long journey. I've enjoyed my recovery, even with a few ups and downs and wondering if I'd ever "get there" at times. (big smile). Yes, Ed. We are "old friends" -- although I have you beat, age-wise. Ha ha. But I still have some pretty cool pics of you scuba diving for my scrapbook. (super big smile). Thanks for that! Looking forward to many more years of friendships on the forum, even though I don't post ALL OF THE TIME as I did once upon a time. Sheesh! I felt it my duty to encourage everyone, plus I had more time.

I just joined a Hereditary Neuropathy forum for the CMT part and will see what that is like. I need some support with that as well. CMT is also called hereditary (motor sensory) peripheral neuropathy, and is included with muscular dystrophy even though it is not muscular but rather nerve originated. And scoliosis CAN be a factor/sign with it. So you have to picture a Venn diagram (two circles that overlap just a little) and know that there's just a little bit a people that are in that middle part where both would be involved.

Thanks again. I am excited. (smile!)

JenniferG
05-05-2015, 05:32 PM
Congrats Susie! 8 years!! You were always a great support not just to me, but so many others following behind you. Never failing to be positive yet realistic. Which is exactly what we all need! Sorry to hear about this latest development and about your fall. Losing balance is difficult but I hope the PT helps a lot.

golfnut
05-11-2015, 08:23 PM
Susie,
Congratulations on 8 years! You are such an asset to this forum! We need people like you, Ed, and Jennifer G. to continue to give such expert advice! You're all amazing!