• The check-in with the dermatologist this week: they agree with Rheumatology that it was Steven's Johnsons triggered by EBV. I told the doctor about the research I had on covid re-activating EBV and she took notes and said it sounds reasonable this happened to me.
• Having covid-related anything in 2023 means doing the reading, dot-connecting and advocating yourself. Have I mentioned this already?
• She, the dermatologist, also reminded me that something severe has happened to me: not only am I feeling the side-effects of coming off steroids—0mg as of Thursday—but I'm now finally feeling what I actually feel like after having been very ill. She said be gentle to myself, for a few more months. Sigh.
• I saw the junior doctors striking and gave them my support.
• Being ill and being very much mostly at home alone is...it's not great. Have I mentioned this already?
• I meticulously descaled my kettle. Meticulously.
• I made myself go out for a book talk on Friday despite feeling ill, but at least off of steroids, and it was worth it. My first bit of real-life again! Saw other humans! Listened to an exuberant talk of history!
• A wind storm blew over my greenhouse and I lost half of my seedlings but was able to save the tomatoes. Sigh.
• I learned about the British horribly deporting children to other countries where many were abused and forced into labor as recently as 1970. The film, the Wikipedia.
• Off the steroids, besides general weakness, stiffness, headaches, dizziness and nausea, I can't stop crying. My body stopped making things to help me through life since the steroids were doing it. And none of my Life Admin has lightened up; there's much to stress about. Sigh.
• I went to the pharmacy to buy vitamins, hoping to prop myself up a little. Taking a long time and with an armful of boxes the pharmacist came over to offer me help and I cried there in the pharmacy that I just want to _feel ok. She was a pleasant woman who called me young a few times, she told me I'd be ok but I know she doesn't actually know.
• I'm finally reading Crying in H Mart, which I'd avoided because I heard it was a tear-jerker, and well, I might as well indulge now. I was crying by page 20.
• I hope next week that this bag o' bones will produce some cortisol on its own.

Published on — Sun Apr 16 2023