I have a cold this week. No big deal, hopefully. This will be my first cold on immune suppression. I had an infection back in April, which came on quickly and severely, but which went away just as quickly once I took an antibiotic. We will see.
I am trying 10 mgs/day of prednisone this week. I'll hold here for a few weeks until my next appointment. I still perceive eye pressure, which has been one of the most prominent side effects that I have sensed. It isn't as severe or constant, but when my awareness is brought to it, I can feel it. I am starting to lose the hair that steriods put on my head... it's strange. My eyebrows and eyelashes are thinning already. That didn't take long. The alopecia rages on. I thought maybe my immune system being turned down would hold it for a little while, but it doesn't seem to be the case. I am a little sad. I sometimes blame being bald when things feel like they're missing in life, if I am feeling lonely or un-pretty. It's not so bad, though. Everyone experiences these emotions sometimes, and I lead a charmed life, not in spite of alopecia, but often because of it.
I started physical therapy to restore range of motion in my fingers, hands, wrists, elbows, and shoulders. During my onset, I had some clawing in my hands and my elbow joints flexed inward. I gained some extension back on the steriods and once I started moving more. I have loosened considerably, but not entirely. I may be wrong, and I hope so, but I get the feeling that this might be a lingering, perhaps permanent issue. It doesn't hamper my functionality, it's more of a comfort issue at this point.
I am running about 20 miles per week, and trying to mix in some speedwork. I get sore frequently, I find myself wondering every time if it's me or the disease. I don't remember feeling muscle soreness this often before the disease onset. More fodder for self-imposed mind games. Despite muscle soreness, I am enjoying a nice rebound of strength, speed, and endurance. Of course, I haven't come close to really testing myself, and it will be a long time before I feel comfortable enough to do this. I still feel that something is "missing" (hard to quantify, which is strange because I am a very empirical person). I am a little nervous moving forward beyond 10 mgs/day of prednisone. This is tricky and uncharted territory... this is where the disease likes to flare. I am ready to dive in, which is easy for me to say while I'm feeling strong.
Life is good today. I find myself worrying about everyday issues such as writing my dissertation, minor work stresses, and missed training during this cold. These are the wonderfully mundane worries indicating that life is moving on, and I am able to move with it. Please, please, let it hold.
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