shadowswallow.bsky.social
Disabled, mostly housebound.
Jewish, queer, & somehow the president of bettikvah.org.
Expect a lot of cat and crafting content (knit, crochet, cross stitch, sewing).
( #EhlersDanlos, #AuDHD, #ME/CFS ‘06, SFN ‘08, #erythromelalgia ‘22)
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I’m trying to see if I can encourage the committee I lead to include it in our congregation’s siddur.
I’m not sure how many other people will be onboard for it, but I just did a presentation about the rhythm of the traditional modern KabShab, and I think a lot more are now on board with trad stuff
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The lights illuminate my messy life.
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📌
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We need more people to be comfortable saying that preventing a category of people from existing is, at best, eugenics.
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Bo’i kallah indeed…
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(Turns out PPS is specifically for symptoms that show up 10+ years later and involves progressive muscle weakness.)
And why don’t we know wtf is up with PPS? Because by the time it showed up we had a vaccine and thought it was a disease of the past.
my.clevelandclinic.org/health/disea...
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This friend actually lived an active, able-bodied life until his 40s, when he suddenly became progressively more disabled.
I was researching it and the more mild someone’s PPS is initially, the worse the rebound is in middle age.
AND THEY DON’T KNOW WHY!!!
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My friend with post-polio syndrome died last spring, and tbh I’m glad he’s not around to see this.
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That said, my personal preference for a congregation to belong to leans strongly Conservative & Halachic Egal, despite my personal philosophy being very Classical Reconstructionist.
(Some Recon theology does make my eye twitch, but engaging with it is worthwhile.)
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Literally speechless (as the leader of a queer Jewish organization).
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The sad reality is I need to be more protective of my cognitive energy, but on the other hand… there’s so much good stuff out there.
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Realistically, a doctor has to tell themself their patient is exaggerating, because *they* are a good person who would never leave someone at this level of pain untreated.
But they are being pressured not to rx opioids by health systems who don't want to get sued, their licensing board, & the CDC.
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And yes, I would love to support my local yarn store, but I'm mostly housebound, so we do the best we can.
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On Knit Picks, my best option is searching "wool" in the page and skimming past any item with the word highlighted in the description.
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It's hard to explain how crushing it can be to not be able to use most items on the shelf, but forced to pick through them to find something (hopefully equivalent) that will work. The tiny hope something cool will be allowed to you, followed by crushing resignation. Over and over. Dozens of times.
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Thank you! We started working on it in September of 2020, but at first we only met twice a month. We have a quorum with 5 at the meeting. Were all lay folks and this will be the third edition of our siddur.