Excerpts from a book I'll never write

I can think. It feels wonderful to just be able to write that sentence and actually mean it. And even though it was only twenty or so days since my last post so much has happened! A week after my last update I had an appointment with my immunologist, there was a cancellation and thankfully we managed to get in. We talked over all my side effects and how the prednisone seemed to not be making much effect and where to go from there. The reason I was still experiencing such fatigue was from steroid induced muscle atrophy, and that was putting strain on my joints. So while we we’re trying to fight the joint pain caused from the anti-ku antibodies with steroids, it was causing even more. Then there was the weight loss from my lack of appetite, it wasn’t too significant but enough to be a little concerned for. The numbness on my face he put down to the steroids, but he wasn’t too sure. My racing heart and hand tremors he could be sure were the steroids. So the final verdict was to lower the...

It’s been a month since I’ve started these new medications and I don’t know if they’re helping. You would think that since it’s my body I would know, but I honestly don’t. Sleep seems non-existent, and I’m lucky if I get six hours a night. I’ll often find myself awake at 2am, staring wide-eyed at the ceiling wondering how I haven’t turned delirious. My brain is in a constant daze, and I struggle to think. Going from someone who had a response on the tip of my tongue to not being able to form a sentence after a few moments is the most frustrating and brain crushing feeling in the world! Then there’s the wonderful effects prednisone has had on my body. I look like I’ve had my wisdom teeth out, and my face is constantly swollen, my nails have taken a beating and have thinned out drastically. Before they were strong! They could grow and never bent or broke, now they bend back and snap and have cracks. Then there’s my hair. I know I joked about it thinning, but it still sucks. My lips ...