Haven’t written anything for a bit because I took a trip to Iowa to see the doctor and ended up quite pleasantly distracted.
Also tried caffeine again for the first time in two months and it made me feel surreally exhausted for the duration of the trip and not like writing. As it turns out high doses of prednisone turn your adrenal system off completely (and then I guess you have to come off it very slowly to be sure your adrenals restart). Not sure exactly how that affects caffeine intake on a technical level, but the experience was a pleasant caffeinated sensation quickly followed by feeling like I was walking around asleep with my eyes open. This could only be defeated with more caffeine and another crash. Not pleasant. The only thing I can liken it to is my experience of kratom (a legal stimulating herb), which also gave me some energy and then made me feel like I was walking around asleep with a dreaming brain. Guess caffeine is off the table until my adrenal system is functioning again.
In other news, the doctors think only another 6 weeks of massive high prednisone dose, which seems pretty good. The specialists are incredibly helpful–we talked for like an hour and a half and there was no sense of rush. The main one also calls me every few weeks to check in. Having a really good doctor who’s helpful to talk to and who nailed the diagnosis right away has definitely made a big difference in this. Though it was kind of strange being back at the doctor that I saw in July and having him measure my muscle strength and having it be basically exactly the same as when he first saw me, while I felt like I’d made this incredible improvement in the last two plus months of prednisone. Which I have, but the majority of the improvement has just been gaining back the muscle strength lost in the ten days between the doctor visit and the muscle biopsy. At that point I was barely functional so now I feel like a new and almost normal person! Vastly more comfortable and able to do almost anything, though really it isn’t normal to not be able to get up off the floor or go up stairs without help. Still getting slowly stronger every day though and I think I’ll be able to do all the basic stuff within a month. I’m able to exercise more now because of having more basic muscle strength and more balance, which will make getting stronger go faster. That should mean I can drive my car around again and take baths before too long, which will be nice!
Oh and I can pick up two out of three cats! I haven’t been able to pick up a cat since sometime in June. Ginny with a heave, and the luscious orange puff slice we stay with in Iowa without much trouble, but the rat is incredibly heavy. It’s not bigger than the other cats but it’s dense: it packs more cat meat per square inch than any cat I’ve ever met. Soon though, very soon. It’s taken to being my little couch rat companion lately, so loving and soft and plush…