2 months in a row of normal CPK levels. Yeah. The CPK this month was higher than last month...but right at the level to be considered normal. So, this is a good thing. I can try to increase PT exercises without causing more muscle damage.
Of course, CPK levels are only part of Polymyositis...but, it's taken three years to get it in the normal range. so, yeah!
I've been really fatigued. Dr. Lowery thinks that is probably due to decreasing the prednisone...just my body adjusting to the change. She said we could go slower on the taper. No way! I want off of that stuff so very much!
Got the official word from my insurance company. I won the appeal, partly. They are going to go back and pay Dr. Lowery through November of this year. But, after that, I have to find a different doctor. So, Dr. Lowery looked at the list they provided me. There were 6 names. One of them doesn't practice anymore. one of them is a pediatric rheumy. The others are at the facility where I work...there is a 4-6 month wait to get an appointment. She's going to try to get me in under an emergency basis. I can't go without treatment a month, much less 4-6 months. I really, really do not want to change doctors. Anyone want to donate the $5000 for out of pocket expenses so that I can stay with Dr. Lowery?
My strength does seem to be getting some better. That's a good thing. No where near where it was, and I think that there is some damage that won't be able to be reversed, but there's improvement none the less.
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