The problem is, I don't have the most positive of updates. Yes, I may finally have the diagnosis I have been searching for after several years, but you see, the whole thing is so bittersweet. Despite the fact that I have known that this disease is going to affect the rest of my life, and the fact that having a clinical diagnosis simply confirms what I have known for a great deal of time, I am still frustrated. Knowing what is likely wrong does not take away the disease itself. I wish I could say it did.
So far with this experimental treatment, my mornings are quite a bit better than usual. Then, by the end of the afternoon my energy reserves become low and I start to "wilt". The pain is still as high as usual in general...but becoming more intense as time gos by. I can't even explain to anyone how frustrating this situation is for me. In the midst of all of this, I am also in the process of trying to find a case manager for myself. This is not going to be an overnight process.
I wish I could explain more. But my energy stores are not allowing it.
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