Everyone has an opinion or a suggestion as to what I should try to cure this disease. Or they have an idea, about what they think I should be doing instead of what I have been doing. Its bad enough that I have to cope with the fact that I have lost control of my own body, somewhat. Its even more frustrating staying civil and kind to strangers that offer their unsolicited advice.
Seriously, I doubt eating "wheat grass" is going to miraculously cure me. I don't doubt it may help some, but it is not the cure.
How do the others with this awful disease cope with the loss of control? Not being able to walk, go places, alone or without assistance? Taking breaks in my car when shopping, I can't make it to more than one store without a break in between. Its how I cope with the pain. Sometimes I can make it to only one store in one day. I refuse to lay down and accept that I cannot move, I push myself beyond the point I think most push themselves, those who do and do not have any sort of disease that limits their abilities.
My sleep is affected by insane pain, and during the day it strikes me down, but I continue. I have zero pain relief, except taking prednisone. At this point I have to back off, I have gained so much weight that its no longer beneficial for me. Stopping the prednisone I have lost almost 9 pounds in a very short time. I feel that I need some control, at least with my weight.
Every day is a battle, to fight the inevitable, the pain that strikes me and challenges my spirit and ability to continue to enjoy my life.
I REFUSE to allow this disease to take me down.
