I was able to take my kids to a cafe for a treat, then thrifting, then a haircut for my 11yo. By myself. Without feeling like total shit. 🥹 I desperately need a nap now, but it was so nice. #chronicillness #chronicinflammation #longcovid #autoinflammatory

Me, with chronic constipation, taking hydroxychloroquine: Um, hello, I was *promised* diarrhea??

This is basically how I managed to get through mortuary school these past two years, too. Rx meds (not vitamins or supplements, which didn't work), disability work accommodations, a lot of labor support from my husband (who took over a lot of other tasks), & borrowing from family.

Everything is not lost it’s not hopeless. But the refusal to ask the real questions and provide the things we need to those we need to get it to ? Has and had CONSEQUENCES

Emily was so down bad for Susan 😏

wp.me/pgY1JP-2Q Clinician-associated trauma and trying to stay hopeful #chronicillness #autoimmunity #autoinflammatory #medicalgaslighting #trauma

Lol People who bitch about this have no idea how humiliating it can be to be so visible in a wheelchair. Everyone is eyeballing you, either benignly trying to figure out "what's wrong" with you or maliciously trying to "catch you faking it."

wp.me/pgY1JP-2l Fire as destruction, regeneration, challenges, and inflammation #chronicillness #blog #immune #poetry #art #inspo

I may have found the company that created them on IG & pointedly told them that I'll need the mice available to me 😅

Y'all, I cannot stop fawning over the wooly mice grown with mammoth DNA 🥹

Our Scientific Director, Jaime Seltzer @exceedhergrasp1.bsky.social, is giving a talk on Dec. 17 at 12 pm ET: Improving Quality of Life in ME/CFS & Infection-Associated Chronic Conditions. Register: us06web.zoom.us/meeting/regi... Available on a donate as you're able basis & 20% goes to #MEAction.

Apparently after I went to see my husband at his new workplace, some of his coworkers asked who "the little woman with the curly hair" was 🤣

Your Pope-name is the last thing you ate in Latin + the number of letters in your last name Pope Laganum XIII, please and thank you

swimmingthroughthefires.wordpress.com/2025/12/14/a... #chronicillness #autoinflammatory #postinfectiousillness #rheumatology

The doc looked at that & said, "You're very organized." Lmao But he was awesome! He listened & examined me. I got an ultrasound that showed mild inflammation in my hands & moderate bursitis in both hips. He gave me a steroid shot in my hips & ordered ALL the lab work. I follow up next weekend ☺️

At another rheumatology appt with my handy lil book 🤞🏼

It's a long hard battle, but it helps if you sign! #medicaid #rfkjr #mecfs #longcovid actionnetwork.org/petitions/fr...

Omg they have an opening tomorrow! WHAT?? NOT getting my hopes up. But, if nothing else, it won't hurt being seen by a rheum while I wait for the immunologist. Esp now that I've already met my ins copay for the year 🤣

Gods, I love my long COVID doc 🥲 She sent a referral to another rheumatologist without me even asking after UVA declined. That woman is my hero.

Two friends from work & their partners came over to bring a couch & coffee table one of them & her fiancee were giving us, & afterward, we coworkers were talking about work drama & one's husband whispered to the other's fiancee, "We're learning the lore" 🤣

Fyi, mortuary stress leads to flares 💫 wp.me/sgY1JP-whelp

The easiest thing for Democrats to do would be to stop confirming Trump judges, but they can’t even be bothered to do that. Just failure all the way down. I really hate these people.

swimmingthroughthefires.wordpress.com/2025/12/05/t... #chronicillness #mecfs #longcovid #autoinflammatorydisease

I have no idea how this will go. Lol swimmingthroughthefires.wordpress.com/2025/12/04/h... #disability #chronicillness #invisibleillness #chroniclife

You can’t tell if someone is disabled just by looking at them. There’s no such thing as the “genuinely disabled”. You are not entitled to a person’s entire medical history just so you can decide whether to believe them or not. People are not faking disability, most are trying to fake being well.

"genuine appreciation is somehow considered less intellectual than criticism" is such a word the number of times I've said I enjoyed something and IMMEDIATELY, like a starting pistol just went off, someone gallops in to do "too bad you are simply Not Smart Enough to have spotted this list of flaws"

I was just talking about this with a coworker. We both have immune diseases & I was telling her how I had to basically threaten enforcement of the ADA & EEOC in order to get accommodations I need (which was frustrating & kind of humiliating but kept me from getting fired).

Ended up looking up Health Grades reviews of that awful rheumatologist I saw and 9 of 14 written reviews described the exact same experience as I had 😐

I read this & feel both comforted & full of dread at the same time. On the one hand, at least it's not just me. On the other, if it took them 13 years, I still have 9 years to go before I get my diagnosis 😑 #chronicillness #autoinflammatory

Simping for heels with this description

The business office kitten 🥲 They named him Vlad #catsky

“There were no cervical cancer cases diagnosed in women aged <25 years in 2021 – the first time that this has occurred in data going back to 1982. This remarkable achievement is almost certainly due to the impact of HPV vaccination.” From report.cervicalcancercontrol.org.au #vaccinationsaveslives

So, UVA Rheumatology doesn't have time to see me. Cool, cool. For now, I'm going to keep taking Naprosyn twice a day & Prednisone once a month/every three weeks, along with my other meds, & start lymphatic drainage therapy again now that I'm recovered from surgery. Because they work well enough.

”Our trauma is not our fault, but our recovery is our responsibility.”

How a Virginia Tech graduate student is helping support a dwindling Southern Appalachia species share.google/ZLQtqzxDHLHy... #climatechange #environment #globalwarming #science

I think of that tweet that was like, "Looking for shoes that can only be described as orthopedic but sexy" all the time. Like. Yes please. Give us ho shoes with gd support please. I'm done suffering.

@usurpedlettuce.bsky.social "I get it. You don't want to pass on the generational trauma of austerity, but also, [they need to] grow the fuck up." Follow for more parenting from Marc 😂

American exceptionalism is believing that ICE Agents are Russian stooges "gifted" to Trump by Putin, because one cannot conceive of any reality where America is evil. It is an unironic "this isn't us" as an immutable truth, and all deviation must be a subversion to prevent inward reflection.

Hydrocortisone-fueled dreams are wild. I had one last night where my funeral home was holding a funeral for this very old lady, & the family had temporarily entombed everyone who preceded her in death for like 20-30 years. There were people in their 80s, their 20s, even kids.

Dear San Antonio, but ESPECIALLY Black San Antonio, or, anyone else who wants solid healthcare for birthing people round that way, my midwifery sib Shiphrah is launching her practice and could use your support (and a few specific items).

"Mom, what's your worst fear besides someone you love dying?" "Um, getting sicker" "Besides that" "Losing my job" "Ugh, Mom, not a NORMAL fear! Like, the dark or heights" "Oh, uh, cockroaches" "... Good one 🤔"

Y'all, the hospital where I had my surgery is running trials to see if GLP-1 medications can help people suffering from long COVID. It's open to any person with documented long COVID who lives in the US. Please pass it on!

Weird side effects of laparoscopic surgery that I didn't anticipate: chest and shoulder pain due to irritated phrenic nerves, and a swollen uvula that's resting against the back of my throat (thanks, intubation)

9) Prof. Hughes wrote a new book about this called 'Psychology’s Quiet Conservatism' which can be found here: link.springer.com/bo... You can support David Tuller's work (only 1 day left to donate for his fundraiser) using this link: crowdfund.berkeley.e...

Super grateful that this was actually helpful and not shaming people 🙏