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Rachel Graves@rachelgraves.bsky.social |
212 followers 387 following 661 posts
Haver of all the diseases. Political obsessive, JD, reporter. Lover of Tacoma & the PNW. EDS, mastocytosis, CCI, OTC, autoimmune neuropathy, ChronicIllness. She/her.
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Rachel Graves
@rachelgraves.bsky.social
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It took me SO LONG to get my doctor to do a hysterectomy. Like, I'm so sick I can barely leave my apartment. How am I going to have kids under those circumstances anyway?!
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Rachel Graves
@rachelgraves.bsky.social
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If "informant" is a word, how can "formant" not be?!
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Rachel Graves
@rachelgraves.bsky.social
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The first good use of AI I've seen: Doctors using it to fight insurance company denials. Gift link.
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Dave Levitan
@davelevitan.bsky.social
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It’s simple. The week before the convention, 12 House Dems selected by that octopus who could predict World Cup games get locked inside NASA’s simulated Mars habitat, where they take ayahuasca and recite the entire script of the movie “Dave” endlessly. The new nominee’s name then appears in the sky.
6 replies 24 reposts 107 likes
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Rachel Graves
@rachelgraves.bsky.social
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Someone on another platform told me this was "easy," & I want to respond with this.
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Rachel Graves
@rachelgraves.bsky.social
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I didn't remember that specifically, but I was thinking about Wag the Dog and whether we are going to have to invade somewhere on the day of the next debate.
0 replies 0 reposts 1 likes
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Rachel Graves
@rachelgraves.bsky.social
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I'm excited about how many horrible features Project 2025 contains so that it will enrage so many different constituencies!
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Rachel Graves
@rachelgraves.bsky.social
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So I wonder if it would help. But certainly worth trying, &, yeah, already had talked to the immunologist about breaking it into fourths, but timing is great to know. That's new info for me. Thank you!
1 replies 0 reposts 1 likes
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Rachel Graves
@rachelgraves.bsky.social
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Interesting. I don't have any other ADHD/autism-like stuff. Just horrendous sensory sensitivities that clearly started with the CCI, but unfortunately fusion didn't help much w/ that symptom. I'm sure I'm not getting adequate blood flow, though, betw POTS & my head being surgically attached.
1 replies 0 reposts 1 likes
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Rachel Graves
@rachelgraves.bsky.social
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Let's make them answer the questions on the citizenship test for their next debate!
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Rachel Graves
@rachelgraves.bsky.social
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I love this hilarious picture. They should have let her wear her Chuck Taylors. Although then she would be two heads shorter than everyone.
0 replies 0 reposts 13 likes
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Anna Holmes
@annabookwriter.bsky.social
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Okay, Ms. Vice President. More like this please.
0 replies 2 reposts 10 likes
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Rachel Graves
@rachelgraves.bsky.social
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Or, you know, knew them as much as they're knowable, and how they're currently defined.
1 replies 0 reposts 1 likes
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Rachel Graves
@rachelgraves.bsky.social
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I can't remember bc it's been so long since I last tried it. Probably too high, given what I know now. It was originally prescribed for migraine, which was impervious to meds bc it was actually CCI. Before I knew all my real diagnoses.
1 replies 0 reposts 1 likes
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Rachel Graves
@rachelgraves.bsky.social
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(I'm not diagnosed with ME/CFS bc I have so many other things that explain my symptoms. Who knows if I have it or not.)
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Rachel Graves
@rachelgraves.bsky.social
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Pyridostigmine helps your sensory sensitivities???!!! It makes me vomit, but my immunologist was trying to convince me that if I could get through 2 weeks of that, I'd be OK. Worth it if it'd help w/ sensory sensitivities!
1 replies 0 reposts 1 likes
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Allison Good
@allisonwgood.bsky.social
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Everyone is one illness away from a disability. Period.
17 replies 182 reposts 782 likes
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Allison Good
@allisonwgood.bsky.social
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If you refuse to wear a mask, at least vote for Biden so your disabled and immunocompromised friends and family have some recourse when their rights are violated.
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Rachel Graves
@rachelgraves.bsky.social
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Really thoughtful way to measure functional capacity for ME/CFS, or, in my case, related chronic illness.
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Rachel Graves
@rachelgraves.bsky.social
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Really interesting. My worst category is light & sound, which I knew. But the questions are really well done.
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Kate Violette
@kateviolette.com
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I wish there was some sort of certification we could do/get so that people understood there are expert patients out here who are better read than their doctors on some stuff.
5 replies 2 reposts 21 likes
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Rachel Graves
@rachelgraves.bsky.social
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YES
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Rachel Graves
@rachelgraves.bsky.social
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& luckily I have a team of drs who get this, too. Each doctor comes w/ their own challenges, but finding a variety of specialists who are dysautonomia, mast cell, autoimmune, EDS aware is perhaps my biggest life accomplishment!
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Rachel Graves
@rachelgraves.bsky.social
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I've gotten v good at doing this myself. Bc, yeah, definitely cannot handle ANYTHING if I don't start at a low dose. And waiting out side effects, too, because they do sometimes go away with time. If anything, I torture myself by trying harder than I should.
1 replies 0 reposts 1 likes
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Rachel Graves
@rachelgraves.bsky.social
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Oh, & steroids don't help me, so there's much concern that no immunosuppressants will help. My immunologist, though, reads everything Afrin is doing & will not be discouraged & is constantly coming up w/ new ideas.
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Rachel Graves
@rachelgraves.bsky.social
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I have a bunch of overlapping drs, so this isn't the same doctor prescribing all of these things, but it's cute that you think my drs are that involved in what doses I'm taking rather than that I just adjust doses myself.
2 replies 0 reposts 1 likes
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Rachel Graves
@rachelgraves.bsky.social
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to get insurance approval. I wasn't on it v long, but he thought it was long enough to rule out JAK inhibitors. <shrug?> Xolair & cyclosporine did nothing whatsoever after several months.
1 replies 0 reposts 1 likes
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Rachel Graves
@rachelgraves.bsky.social
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Ayvakit, on the lowest dose, helped my rashes, which are far from my worst symptom, & nothing else, & made me absolutely miserable with a million side effects. Tried it for 2 months. Rinvoq gave me terrible headaches, but my dr also then decided, after giving me samples, that he wldn't be able ...
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Stephen Wolf
@stephenwolf.bsky.social
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A reminder that if Trump wins & purges the civil service to replace it with loyalists as planned, all sorts of govt data will become totally untrustworthy. The House GOP is already trying to rig the census to screw Democrats in redistricting after Trump's first-term attempt failed
7 replies 172 reposts 357 likes
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Rachel Graves
@rachelgraves.bsky.social
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Or Cellcept because apparently that's good for neuropathy, & I have an autoimmune neuropathy.
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Rachel Graves
@rachelgraves.bsky.social
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I don't know if I should laugh or cry at that. Did you learn about any useful drugs? Failed Ayvakit. On all the MCAS stuff, or found it useless. I take vats of ketotifen & cromolyn, & it barely helps. I'm on amlexanox now, which I might even stump you with. Failed Rinvoq. Next idea is hydroxuyrea.
2 replies 0 reposts 1 likes
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Anna Holmes
@annabookwriter.bsky.social
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3. They are coming for all sex. All you romance readers? Yup, that’s porn, according to the Heritage Foundation. 4. These rules will prosecute teachers and librarians for “distributing”. Even if we’re talking about Shakespeare in the classroom or patrons browsing shelves where romance happens to be.
1 replies 4 reposts 15 likes
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Rachel Graves
@rachelgraves.bsky.social
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💜 Thank you so much! You're always incredibly helpful. I think what I need is to find a mastocytosis/autoimmune drug or combo that actually works for me, & it seems like trial and error is the only way.
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Rachel Graves
@rachelgraves.bsky.social
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That's pretty cool, though, to be able to disappear into a work of fiction! I hope you're able to find time to work on it. I don't think I could write fiction. I'm definitely not a world-building kind of person. More of a look-how-weird-the-actual-world-is writer.
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Rachel Graves
@rachelgraves.bsky.social
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💜 I'm jealous that you can do meaningful things. I want so badly to participate in the world again.
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Rachel Graves
@rachelgraves.bsky.social
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A voice of reason on a ridiculously misleading story.
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Rachel Graves
@rachelgraves.bsky.social
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Thank you for being a voice of reason on this. When I saw all the visits during Obama's presidency, it made me really angry that this was treated as a significant story. & if Biden had had Parkinson's since then, pretty sure we would physically see it.
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Rachel Graves
@rachelgraves.bsky.social
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I'm so glad you can write. & obviously do AMAZING research. I feel like just trying to deal w/ the health catastrophe of the moment sucks up all my energy. & getting out in nature, which, thank god, I can do.
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Rachel Graves
@rachelgraves.bsky.social
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2) I was ahead of my time & am now behind & feel like I might have missed the moment to write a book like that, & 3) I can't figure out how to get past my vision issues to even read the whole thing let alone rewrite it all, which I'm sure it very much needs.
1 replies 0 reposts 1 likes
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Rachel Graves
@rachelgraves.bsky.social
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Which, of course, we now know ARE related, even if no one understands how. And in the meantime, suddenly everyone was publishing memoir/research books about their mystery illnesses. So I feel like looking at mine will be heartbreaking bc 1) now I'm even sicker, ...
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Rachel Graves
@rachelgraves.bsky.social
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& then all their boards rejected it for being too icky. & then I got better, & then I got much sicker w/ all my current stuff, & then it took a long time for me to understand how all these things were related, so I felt like it was somehow my fault that I had a million seemingly unrelated diseases.
1 replies 0 reposts 2 likes
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Rachel Graves
@rachelgraves.bsky.social
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The last serious writing of my own I was doing was memoir/research about my experience w/ endometriosis. I wrote it while I was going through it, & it was super raw. I had an agent (male, btw) who loved it & tried to sell it. I had editors (female) calling me to talk me into going w/ them. ...
1 replies 0 reposts 1 likes
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Rachel Graves
@rachelgraves.bsky.social
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I don't really know. I don't have much cognitive impairment. I do have a lot of visual issues, & it's really hard for me to read, & I haven't figured out a way to write, given that. My writing has always been extremely research-based. I listen to audiobooks, but I can't absorb as much that way. ...
1 replies 0 reposts 1 likes
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Rachel Graves
@rachelgraves.bsky.social
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Yay you! I haven't dared look at anything I wrote back when I was still actually writing.
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Melanie D’Arrigo
@darrigomelanie.bsky.social
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If you steal $1000, you can be sent to prison. When health insurance companies steal $50,000,000,000, they get tax breaks, subsidies and government contracts, while the people they steal from die or go into debt. But keep blaming immigrants and poor people for rising crime.
23 replies 747 reposts 1927 likes
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David Waldman
@kagrox.bsky.social
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A CHILD MOLESTER has won the Republican nomination for president for the third time in a row, and the media says he won the debate so the other guy— the incumbent POTUS — should drop out.
3 replies 27 reposts 74 likes
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David Waldman
@kagrox.bsky.social
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It’s worth reminding ourselves once in a while, even if no one is listening, that DONALD TRUMP IS A HUGE SICKO PERVERT.
1 replies 25 reposts 91 likes
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David Waldman
@kagrox.bsky.social
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President Biden recently met with the Secretary of Transportation, so I can only assume he’s slowly turning into a train.
10 replies 37 reposts 194 likes
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Rachel Graves
@rachelgraves.bsky.social
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Shocking that anyone associated with Trump would have inappropriate sexual relationships.
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Proof of Burden
@proofofburden.bsky.social
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AOC coming out behind behind Biden is a good reminder that your progressive heroes (and mine) didn't want this fight a year ago and they don't think it's good for progressivism to fight it now
3 replies 16 reposts 108 likes