LMNT’s electrolyte sparking waters are my new fav, like many with who are bulk electrolyte salt subscribers they sent me a free 8-pack, Black Cherry Lime is the best IMO, tastes like Sonic’s famous cherry limeades, unpaid recommendation! What’s yours? 🍒🍋🟩
Trying to balance weight from a necessary high sodium #POTS#dysautonomia diet (with lymphedema from #EDS#MECFS, and disability exercise barriers) is tough
I may experiment with more sparkling water and less salts, see where it gets me!
This could be the connection between Ehlers-Danlos and neurodivergence. (People with EDS, like me, are 7 times as likely to be autistic and 5 times as likely to have ADHD -- also like me.)
A recent study (https://bit.ly/3xA7S4B) revealed ME/CFS participants with joint hypermobility, particularly those with EDS, “demonstrate distinct clinical characteristics, including more severe symptomatology and reduced HRQOL.”
I got an official diagnosis yesterday, at the age of 52, for a genetic disease that I’ve been manifesting symptoms of since the age of 5.
I have been ignored and gaslit by the medical community for 47 years.
It only took one doctor to say “your body isn’t responding the way I’d expect, let’s find out why” to get the process started and I am so very grateful for that doctor! But it also took more than 40 years to find that doctor and that’s insane
@Invisiblyillin BTW, gonna drop this here for anybody who might need to know: #EDS & #neurodivergence often go hand in hand. EDS comes with a 7 fold increase in the prevalence of #autism and a 5 fold increase in the prevalence of #ADHD. If your body is weird, there's a good chance your brain is, too.
"By taking biopsies from long #COVID patients before and after exercising, scientists in the Netherlands constructed a startling picture of widespread abnormalities in muscle tissue that may explain this severe reaction to physical activity.
#EDS question: Does anyone have experience with arm compression sleeves? Apart from my finger joints, my elbows tend to be the most painful. Also interested in shoulder support. #EhlersDanlos
Wanna confirm your worst fears? Here's a reddit thread of residents showing unbelievable contempt for patients w certain diagnoses: https://reddit.com/r/Residency/s/AbReVlD4FO
Hey allies:
This is what your loved ones have to deal with. Go w them to doc appts to help advocate!
#PennedPossibilities 90: Do any of your characters have disabilities? Can you relate?
My current #SciFi quartet is a #cyberpunk take on #disability, inspired by my and my sister's experiences with Ehlers-Danlos Syndrome (EDS). Cyborgs aren't superhumans, but chronically ill people the #healthcare system left behind. MC's fight to stay functional amid inevitable decline mirrors the cascade failure of #EDS. #Writing my own possible future is scary, but MC's resilience also gives me strength.
🚨 Hello friends! I need neurosurgery care for untreated issues I’ve had since I was a baby, kid and young adult
It’s taken many years to be taken seriously and get to experts who can help! Medicare covers 80% but Medicaid covers nothing out-of-state 😥 Unfixed, I could die
We added in microclot and oxygen therapy goals too, in case I get lucky enough to get all of the care I need 🙏🏼
Please donate and share this fundraiser everywhere! Any amount helps, thank you 💜 https://gofund.me/e252e700
I need a tethered cord release with lumbar disecotomy — doctors in Nebraska, Georgia, Iowa didn’t help (or even look) so I must see the $$ #EDS tethered cord expert and her colleague in Rhode Island
Speaking of Bi things... I'm currently using an extra dining chair in my office, which is killing my back and makes my legs sad. I think I'm finally going to treat myself to this gloriously queer office chair.
7 weeks on Duloxetine. Massive improvements to mood, energy, and pain! I feel like I have my life back again. POTS flare-ups aren't any more common but are more severe when I do have them, with added vertigo. (yay)
HOWEVER sleep isn't great. I don't feel rested in the morning. I guess it's Restless Leg Syndrome, they move all night. I've actually worn a hole in our sheet! Hoping this improves.
Thunderbird family, thank you for your unending patience. Some of you may have noticed this already, but we're happy to say that Thunderbird 115 is now available on Flathub!
Enjoy Supernova, enjoy your Friday, and thanks as always for supporting free and open-source software