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findingk8.bsky.social
One day at a time, golden retriever at my side. hEDS & all its friends (POTS, MCAS, CCI) Retired flight RN, aspiring NP? Hope isn’t found, it’s built - through action, perspective, and connection. 📍South Central PA
43 posts 71 followers 232 following
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Posts 17 Comments 33

Please please help Jessi with any amount you can TYSM! This is URGENT! #NEISvoid #EDS #hEDS

submitted 3 days ago • 1 comment

NEW: A letter from an anonymous federal worker. Please read and share: www.muellershewrote.com/p/letter-fro...

submitted 4 days ago • 400 comments

When a non disabled person gets hurt or seriously ill, they don’t hesitate to go to hospital They have faith they’ll be treated quickly, feel “better” & get to go home When you’re disabled, you learn to avoid hospital at all costs. Your faith in healthcare vanishes & that loss is painful:

submitted 5 days ago • 15 comments

Studentaid.gov FAQ page about SAVE says payments will resume no earlier than Sept 2025. Someone want to tell me why Nelnet has them resuming May 19? I’m a disabled nurse with no income. My balance is $268k. @aoc.bsky.social @petebuttigieg.bsky.social @thesbpc.bsky.social

submitted 5 days ago • 1 comment

PLRC & 4YouAndMe are recruiting Long COVID patients to work on an app to help patients manage symptoms. Participants are compensated and will receive wearable devices. Please see the attached flyer for more info, and contact [email protected] with questions or if you are interested!

submitted 32 days ago • 0 comments

When you’re chronically ill, your baseline is everything. Managing it can be a full time job. Non disabled people can’t understand how hard we work to ration energy, avoid infections & minimize setbacks. Even when you do everything “right”, progress can be wiped out in an instant 🧵

submitted 10 days ago • 11 comments

Please read the doc provided by @altssa.bsky.social If you want to help, visit here:

submitted 10 days ago • 14 comments

My physical therapist is a part time matchmaker. I met another patient yesterday who had my same surgery a year ago. Hope, but also reality, was seen. Connection is what keeps me out of despair with a disease that is never cured. #hEDS #EDS #CCI #POTS #NEISvoid #disability #raredisease

submitted 11 days ago • 1 comment

I try to find ways to explain Ehlers Danlos to people who don’t understand. Imagine your house was framed up with defective wood. When you move in, you start noticing problems. You hear cracks and shifts. You call someone to fix the drywall and the ceiling (that’s the orthopedic territory). (1/4)

submitted 13 days ago • 1 comment

We’re raised to trust a doctor’s word, but in EDS, it’s often other EDSers that often have the best information: who to see, what works for them, education on the condition. When we find the good docs, so many are OON because they’re tired of insurance nonsense. Sigh. #EDS #hEDS #healthinsurance

submitted 14 days ago • 3 comments

It’s been a rough few days. After my #hEDS diagnosis, I knew there were associated syndromes, but I wasn’t expecting to fill the entire #EDS bingo card. Even harder being a medical provider with #heds. I know too much. #disability #NEISvoid #CCI #AAI #tetheredcord #POTS #MCAS

submitted 15 days ago • 3 comments

Living with disabilities is a masterclass in how to handle gaslighting You get it from everyone. Doctors, family, friends, bosses, colleagues A neverending litany of people telling you “it can’t be THAT bad” or “you should just do this” We are the experts in our bodies. Respect us. Listen to us.

submitted 16 days ago • 46 comments

There’s a new display about Ehlers-Danlos Syndrome at the clinic I go to for shoulder instability. I’ve never seen anything like this before. It made me feel seen. And it was further confirmation that it’s not “all in my head” as male doctors have said to me in the past. Representation matters.

submitted 18 days ago • 3 comments

Whenever a friend develops chronic illness, has a bad experience with the healthcare system or faces temporary disability, they say “oh my god I didn’t know it was THIS bad” They did know. We told them. They chose not to believe us Believe disabled people. Listen. Help. One day it’ll be your turn

submitted 18 days ago • 16 comments

If you don't realize this type of scapegoating & stigmatizing affects you, let me remind you that being disabled is the one marginalized grp that ANYONE could enter in a split sec, even if you don't admit disability to yourself. But it shouldn't have to affect you to care about ALL of the injustice.

submitted 23 days ago • 0 comments

Yes to all of this. I would also like to add a topic that was not covered in this Opinion piece: The science of the health needs of people with disabilities. Also, ppl with disabilities are NOT to be conflated with incompetence www.who.int/news-room/fa...

submitted 19 days ago • 0 comments

This is the kind of day we are having. Someone send more salt. And I’m out of milk for tomorrow’s coffee. Help. #heds #pots #CCI #AAI #NEISvoid #disability #spoonie

submitted 19 days ago • 2 comments