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Moving forward with scleroderma, as it wrecks my system, is what I've been working on in therapy. The very much unwanted guest at the party, passenger on the bus, who just ain't gonna leave. Also doing OT for my hands. Meanwhile, rough Saturday night, Sunday, and Monday with the guts, and they're still not right, cramping and over correcting from the meds...you look up stuff about scleroderma and the GI system and "hard to diagnose" comes up on clinical sites. I'm in touch with my GI, but she's not super reassuring or helpful so far.
Whee.
Look, I have writing I want to do, visits to loved ones and cool, beautiful places I want to make. I'm doing my best. I really can't tell if it's going to be enough. Yesterday I meant to go to the Blanton museum with a friend after we had lunch, but I was too weak and shaky and short of breath to do it. Ditto going to walk around the store for my groceries; I had to order them online and do curbside pickup. Taking my recycling out this morning did me in for a bit. I had a pulmonary function test recently and the lungs are holding steady around 60%, so it feels like this has to be related to the guts somehow, but the GI 'cannot comment on the shortness of breath.'
Yeah. I'm trying. But I want to give up and cry right now.
Whee.
Look, I have writing I want to do, visits to loved ones and cool, beautiful places I want to make. I'm doing my best. I really can't tell if it's going to be enough. Yesterday I meant to go to the Blanton museum with a friend after we had lunch, but I was too weak and shaky and short of breath to do it. Ditto going to walk around the store for my groceries; I had to order them online and do curbside pickup. Taking my recycling out this morning did me in for a bit. I had a pulmonary function test recently and the lungs are holding steady around 60%, so it feels like this has to be related to the guts somehow, but the GI 'cannot comment on the shortness of breath.'
Yeah. I'm trying. But I want to give up and cry right now.
