I know I said I was going to back off of the blog for a while...but I have a post crying to be written...so forgive me for reappearing unexpectedly. This week was a tough week. There was the continuing struggle with pain and the struggle to understand/accept that this is the way my life is going to remain...
He told me that the surgery was bound to end badly, no matter what precautionary measures we took. I stood to risk my life and my limb. And therefore, as a surgeon pledged to "do no harm"...he would not be operating on me. We both agreed that, since my joints were in such bad shape I should revert to a systemic medicinal approach. So I went to see my Rheumy in NYC yesterday. I was in fervent prayer and in great hopes that he would summon the courage to confront the odds and give me a script for a biologic drug which my body desperately needs. He examined me and felt that I was not in any worse shape than I was when he first met me...which is ridiculous. I am twice as bad as I was then...My arms are almost useless, my pain is indescribable and I can't walk more than 50 feet.
And then he told me no....he would not prescribe the med unless I was to see and be managed by an ID doctor at NYU...a colleague of his. So he set out a bunch of hoops for me to jump through. At great expense, wasting precious time and strength...and for an uncertain gain. I went home in the dumps...only to find that the day program I was so much looking forward to....was not going to be a possibility either. I was too distraught to cry. Instead I slept. For 16 hours and woke in a rotten mood...
My online friend tried to cheer me; tried to think of some way to lift my spirits. And I was bitter, hostile, and in despair.
My parents visited....which I enjoyed.
And then my aunt called.
Here you'll need a bit of background. My uncle--her husband--had terrible RA.(rheumatoid arthritis--a disease similar to mine) .He eventually died of it in his 50's. But for all the time I knew him he sat in this one chair in the corner...a smile on his face, with twinkling eyes...and never ever complained. His wife, Dorothy told me several phone conversations ago and she repeated it again today, "I'm so glad now, that I'm old, that I have arthritis too. (even though she has OA, a different thing altogether)...because now I can experience some of what he experienced. I can share his pain."
Today I asked her if she had a wheelchair....and she said, "No, Bob always refused a chair and he managed to walk even though it hurt him terrible....If he could, then surely I can too."