Yesterday I rushed off to a morning appointment with the rheumatologist. I was pleased that he spent lots of time with me, answered every question I had about all of the recent bloodwork I've had done, and all of the reading I've been doing on less common alternative/"fad" treatments, even browsed through a paper I'd printed off from a medical journal with a new theory in it. Bottom line about my condition at this moment: Since my rashes have been slowly increasing and my muscles have been getting sorer over the past few weeks, we decided that it would be unwise to decrease the frequency of my IV antibody infusions AND keep tapering the prednisone. He said it was up to me which one to reduce, so I chose the prednisone, since although the antibody treatments are inconvenient, they have no negative effects on my body. (I recently discovered that after almost a year of taking steroids with seemingly no side effects, I am now beginning to have some--thinning and receding hair, and zero production of testosterone and dhea, critical hormones. I'm taking supplements of those hormones now). So I will continue tapering the prednisone, albeit a little more slowly, reducing the dose every 3-4 weeks instead of every 2, and continue the treatments every 2 weeks but at a slightly higher dose (which means I'll sit there an additional 45 minutes).
Next I ran a few errands, then returned home and took on a huge project--cleaning T. and I's room. It was messier than anything I've ever seen. The floor was literally ankle deep in clothing and garbage--crumpled papers, candy wrappers, you name it. Overlaying all of that was about 10 balls of yarn, half unrolled and tangled together forming a spiderweb around the room. Every other surface in the room was covered as well. I neared completion shortly after I. returned home from school. Instead of being appreciative, she was upset that I'd cleaned her room, although I had been warning them that this would happen for several weeks. After arguing with her, I carried a large bag of trash and a pair of razor sharp kitchen scissors down the stairs. When I got to the bottom of the stairs, I twisted my ankle on the pair of shoes left there by L. and fell, hitting my head on a large cedar post at the foot of the stairs. Luckily I was not impaled by the scissors, but did give myself, as the ER dr. described it, a "closed head injury."
I now have 6 staples in the back of my head, which I will have for a week. I received a tetanus shot and a CT scan. Thankfully, I do not have a concussion. I am also grateful that I did not need to have the hair shaved around the cut, since I am already having hair issues!
My next treatment is tomorrow and I am actually glad, so that I can have a restful day. The ER dr. told me to take it easy and not lift anything heavy, LOL. I have a 35 lb. toddler!
5 weeks ago