#anyway idk I just kinda. made peace with being debilitatingly ill for the rest of my life yknow? | Explore Tumblr Posts and Blogs

cesium-sheep · 1 month

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I've always bounced back so quickly as soon as I get even the slightest bit of breathing room. I suppose I shouldn't be surprised that it seems to be happening again.

I was talking to matt earlier and like. I'd be happy at 50%, that's an entirely acceptable long-term quality of life for me. (I've been below 5% all year.) but I suppose I don't have to limit myself to only 50% if I'm responding so well that it seems I might get further without significant additional cost (personal or financial).

#plus again I do need enough wiggle room that it's safe to (very slowly) take away the prednisone #like that's kinda the more immediate goal #and I don't actually have to reach 50% for that.#did I write down that the immunologist was appalled at the dose tampering from last year when I mentioned it?#anyway idk I just kinda. made peace with being debilitatingly ill for the rest of my life yknow?#and like. a week ago 50% felt soooo distant and aspirational #possibly too much to hope for #a very long-term goal #but I'd say I'm probably back in the 20s already? just eyeballing it?#at least if the past couple days become the norm #(honestly hanging out in the 40s is honestly pretty fine long term)#(but 50% is a good straightforward concept)#(I was in the 40s zone from the time I put my foot down about mcas until I got covid with the exception of a bad med and the vaccine)#(that's over a year with the exception of 2 2-month periods.)#(the first resolved on its own after stopping the offending med)#(the other we had to medicate out of)

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