CharCharBinx

"We're like brothers; only closer."

The sweetest "Dream Land" lol :3

Still one of my fav pics. Unfiltered :3

Senior cat snuggles during gastroparesis flareups 🥰🥹
#hEDS #ChronicIllnesses #TismCompanion ❤️‍🩹

Yes it is and yes it does :3 🥰

Saw this gem recently lmao

Ah ok. Ya my anxiety does that too! Gatta remind myself that the worst thing a person can do over the phone is yell and I can always leave the convo since it's not in person. Lol

Aww thanks! His name is Bosley; a school horse at Rock Creek Park Horse Canter in D.C. off Military Rd. during a lesson. Pic was taken in 2015. My condolences for your furbaby <3

ZocDoc could help figure out appt dates/times and phone numbers

Yes! See the person, not the illness(es). 🫡🩷

The Ehlers Danlos society webpage has a list of doctors and you can narrow it down to the city. HEDS is the only one that can't be genetically found (dna), but you can still get clinically diagnosed. Good luck! <3

I found out about mine last year along with hEDS 🥲🙄 *snap crackle pop while feeding the cats* lol

Mine is fine too lmao

Accompanied by all the stims you could want :3 *bliss*

Oh wow, my condolences! Ya women seem to be affected more than men and I believe a higher genetic risk of passing it (still reading up on it). I'm not bedridden yet but I have semi-retired so I can just preserve my body a bit better. 24 years of horses can really mess you up lmao!

And ligament/tendon tears can be common. And [small fiber] neuropathy can cause nerve damage that leads to numbness/tingling/pain.

*prehensile eyes* lmfao

Not everyone needs the same care but I'll list a few things to start with; bracing joints, rollator for mobility, IV infusions and compression socks for POTS, Zofran for nausea, PT, Cardiologist for heart, Gastroenterologist for gut, and Rheumatologist. For guidance only (and to anyone reading this)

Caring for yourself (since diagnosed) will be a learning curve but a thing you can do is research it first, find out what bothers you most, and find a doc or two to help you with those. As for fam education, find websites about EDS (Wiki/Mayo Clinic and Ehlers Danlos Society) and how it impacts you.

Ya that's weird af. We need to weed out the bots/fakers cuz our eds community suffers enough already. I got diagnosed 10 months ago so if you need any advice lmk. And don't let a doctor's one hour lecture from 15 years ago dictate your while life experiencing it first-hand. Welcome to the Dazzle! <3

He said it too...

Strange... she said the same thing....

Multivitamins for overall health, Zofran (10mg) and MJ as needed for Gastroparesis nausea/vomiting, compression socks for blood pooling, extra salt for POTS, some bracing for tendonitis/neck brace for Craniocervical Instability, walker, and Ketamine infusions (every 8 weeks) for pain management.

That's great! I still need to get some books. Been rabbitholing since getting diagnosed 10 months ago. With knowledge comes power and it has really helped with my quality of life (pain, mobility, nausea, etc.) now that I can finally start helping myself. The daily maintenance seems to help the most.

No problem :3 Facebook pages have the same info (probably more so since Bsky is newer) but their support groups and Reddit's support groups can be kinda "gatekeepy" so it can be better to observe than to interact. You can still learn without getting caught up in drama. There're also EDS books.

Bsky has the EDS webpage too. The page might also have more fellow EDS-ers to talk to.

The Ehlers-Danlos Society webpage has a list of caregivers and you can search the doctors by state. To find other people who have it, I suggest finding EDS pages and add people from there and build a community from there. There's also support groups online and in-person.

I'm in the process of getting mine. TiLite has great options; electric and manual (also a motor attachment)/1,000+ customizations. Hope this is a good start ☺️

I remember we had George Bush "skins" for those types of games lol