Long Covid - a thread.
So, living with long covid isn’t great. I’m a relatively mild case and I’m managing it reasonably well with pacing but ‘managing with pacing’ still means a huge impact on life. 1/9
@jesshoneybadger.bsky.social
Chaotic good writer and scientist with severe, bed bound MECFS. Writing wholesome stories, science stuff, and funny anecdotes from bed. Lover of memes. jesshoneybadger.substack.com
Long Covid - a thread.
So, living with long covid isn’t great. I’m a relatively mild case and I’m managing it reasonably well with pacing but ‘managing with pacing’ still means a huge impact on life. 1/9
My child, on turning 13:
“This means I have to take off my shoes at the airport, doesn’t it?”
dear july: help me find the deepest joy in the smallest hings - Feelings @_tiny -Feelings
05.07.2025 16:33 — 👍 0 🔁 0 💬 0 📌 0@delia_cai me (not handling things) to my friend (also not handling things): I think you handled it perfectly
04.07.2025 22:45 — 👍 5 🔁 3 💬 0 📌 0Craig Christ, Ph.D. ••• There is something I realized last night when I heard some Republican complaining about all the "fraud" in Medicaid. Medicaid does not pay people, they pay insurance companies or doctors. If there is "fraud", then why are regular people the target. Want to eliminate Medicaid fraud? Get rid of the insurance companies and doctors that file false claims to Medicaid for reimbursement. That's your fraud. Not old people in nursing homes. Not disabled kids or poor kids. Universal health care needs to happen and we can use their own stupid excuse against them when it is time.
Such a good point that I had never actually thought through before. Why are the patients being the one targeted over Medicaid fraud? We can’t even really do it!
01.07.2025 22:11 — 👍 2 🔁 0 💬 0 📌 0RFK Jr. is launching a government registry to track autistic Americans using private medical records.
22.04.2025 17:36 — 👍 7108 🔁 2939 💬 1892 📌 1184It doesn’t matter. It’s inside the insurance cos, and Medicare/Medicaid, VA Medical patient data is all either already accessible or at risk via DOGE. And the EO for data sharing between gov’t orgs. They’ll use AI to also parse school records, social media, etc
www.hipaajournal.com/sen-warren-s...
I enjoyed that the Ratliff family set sail without a clear plot resolution.
Keeps things open for them to lose everything and retreat to the small town they own in Canada, perhaps?
White Lotus, meet Schitt’s Creek.
Hear me out. An HBO mockumentary reality tv series called The Ratliffs that follows the disgraced North Carolina family on their road to redemption. #thewhitelotus
07.04.2025 02:47 — 👍 955 🔁 56 💬 47 📌 15I bought a new phone case and added a new screen protector so all the messages I'm sending feel extra fancy today.
25.03.2025 19:47 — 👍 2 🔁 0 💬 0 📌 0C.H. Romatowski @chromatowski.bsky.social NIH recently found 1 in 22 ppl who'd had Covid developed ME/CFS. The "mild" form of that disease, as @julialmv.bsky.social 's graph shows, means losing capacity to do 50% of your daily activities. What would you give up? Friends? Time w/your kids? Could you cut work hours in half w/o losing yr job?
When I look at this I think, “yup, severe MECFS is exactly where I am.”
25.03.2025 19:35 — 👍 6 🔁 0 💬 1 📌 0I took my main virology course in England and have a small subset of niche words that I learned with a Scottish accent. 😂
23.03.2025 15:38 — 👍 3 🔁 0 💬 0 📌 0I ran two half marathons in my life, during the era where I was giving birth to babies. It was the best thrill
20.03.2025 20:25 — 👍 1 🔁 0 💬 1 📌 0He did it!!!!!!
20.03.2025 07:42 — 👍 0 🔁 0 💬 0 📌 0Go John! I can’t wait to hear your stories after you finish and rest up. We are cheering for you!
20.03.2025 00:04 — 👍 0 🔁 0 💬 0 📌 0A photograph of the posters television showing curling tournament on it. The photo shows the end of the sheet of ice with one curling stone in the middle. The United States is playing Switzerland.
Just popping in to remind you that your weird friend is still weird.
Just paid $24.99 to watch the LGT World Women’s Curling Championship on my personal television.
Hope you are also able to carpe diem your Saturday afternoon!
A photo of the moon using a phone camera. The moon is small but slightly red and centered. Some 35 mm film sprockets are along the side.
I went outside at 3am to see the lunar eclipse so you didn’t have to.
The moon was normal sized and slightly red, but nothing extremely out of the ordinary. The streetlights were trying their best to outshine the moon and failed, but made a good effort.
Nature: 10/10
A photo of the moon using a phone camera. The moon is small but slightly red and centered. Some 35 mm film sprockets are along the side.
I went outside at 3am to see the lunar eclipse so you didn’t have to.
The moon was normal sized and slightly red, but nothing extremely out of the ordinary. The streetlights were trying their best to outshine the moon and failed, but made a good effort.
Nature: 10/10
mmmyoursquid People love to talk about whether or not disabled people can work but if you can work just fine and your disability is destroying your ability to have a life outside of work (because work takes all your energy and more) Dead silence. Nobody cares. eenymeenypia File this under, oh you can be active for 4 hours? You can work part-time. Um no, I have to get ready for work (30 min) get to work (15 min) get home from work (15 min) feed myself all day (30 min) maintain myself, my home and my life (15 min, yeah right), which leaves 15 min for work and absolutely nothing else. chameleonchild This is so accurate, back after I'd relapsed I wanted to try and go in for one class at school so I could still stay in contact with the education system. I let slip during a meeting that I managed to drag myself to that I could manage about 4 hours of activity a week, which the teacher sprang on to mean I was being lazy for just trying to get to 1 hour class. Never matter that it was 30 minutes travel, that I would have to get washed and dressed, that I would probably still need to recover for 3 days from it. Far too often abled people see the things they do easily as "non activities" ', they don't realise that for many disabled people these things have to be carefully planned and measured, and sometimes they simply can't be done.
12.03.2025 18:29 — 👍 3 🔁 0 💬 0 📌 1I love The Diplomat, but it surprises me how often they talk about clothing, choose clothing for each other, or change clothes in front of each other.
Those involved in diplomacy, when you get a minute, is this a thing? 😂
ok i admit it's important to keep your vitamins in a pill organizer that looks very different from the one you keep your dog's pills in, but at least i'm not getting worms this week
08.03.2025 20:24 — 👍 789 🔁 68 💬 28 📌 4Every time I read a story like this I recommit to be louder and more defiant.
06.03.2025 22:47 — 👍 48497 🔁 11685 💬 2249 📌 958I fight through my tears everyday to keep you updated on Social Security & dismantling of major health care programs.
I want you to know there are MILLIONS of grassroots people working on this. The judicial cases DO matter. We must live in hope NOT fear. As someone on SSDI, I get it. NEVER GIVE UP!
I hope you are right about “no chance of passing.” You are the only one I would trust to say that BTW.
05.03.2025 17:55 — 👍 35 🔁 1 💬 2 📌 0I hope you are right about “no chance of passing.” You are the only one I would trust to say that BTW.
05.03.2025 17:55 — 👍 35 🔁 1 💬 2 📌 0Trump left out how many kids won’t have healthcare treatment if they get cancer like DJ had.
I felt for him too. Just cringe.