Originally Posted by
rohrer01
My dear scoli friends,
Like the title of my topic, it's official that my downward spiral is speeding up. I may not be strong enough to survive a surgery. I haven't heard from Dr. Folgeson's office yet. My guess is that he'll take one look at me and say the same thing. However, the surgery may be lifesaving IF I could tolerate it. I need it so that I can hopefully eat without pain. I've noticed that when I force myself to eat, not only does it hurt but my heart races as well. I have a muscle wasting disease, as you all know. My arms and legs have become very thin and atrophied and I weigh a whopping 108# on my 5'7" frame. I would actually be about 5'9 or 5'10" if not for the scoliosis. I was 5' 8-1/4" at my peak growth at age 15 before I began to shrink despite my scoliosis. I'm sure I must be less than 5'7" now because my scoliosis is worse.
I am weak and sometimes walking is an impossibility. My feet just won't come off of the floor and if I shuffle around too much I lose the ability to walk altogether.
I am bummed beyond belief. I feel like I'm going through the five stages of grief all over again. Right away I felt sad and I still am, but I'm getting angry, too. I want to live long enough to see AND enjoy all of my future grandchildren. I already can't do things with my seven y/o grandson. Life is so unfair. It's bad enough to have the scoliosis but to have this death sentence on top of it all is too much!
That's my update.
Rohrer01 signing out for now.