Back in February I asked my hand doc for a referral to get braces for my left hand, which needs surgery, but can't have it until my bones have more density. Unbraced I keep hurting myself (there's a bone spur involved in the whole mess).

An imperfect brace made of plastic and velcro (yes, different plastic) was made 6 weeks ago. It needed to be remade a bit last week because it's affected my sensation in my thumb and I really need one made entirely of metal so I can wear it in the shower (where I tend to hurt myself even when I'm trying to be very careful).

Today we needed to do an assessment and, despite the issues with the imperfect brace, my pain level is lower, plus my hand and thumb are stronger!

The wisdom on bracing for conventionally jointed humans is to brace for as short a time as possible so that the body doesn't become overly reliant on the support. It is very common to hear this advices from physical therapists and occupational therapists who don't regularly work with hypermobile patients.

Those of us with silly putty for connective tissue benefit from proper bracing. Preventing our joints from going even close to subluxation is important. Even subclinical subluxations (these don't show up on an x-ray usually, a trained therapist or other healthcare provider has to feel for them) can cause constant pain and leave you vulnerable to further joint instability.

I now wear light ankle wraps when I'm practicing yoga asana and high top boots for walking outside. This switch has prevented injuries to my ankles, knees, and back. It's also prevented falls

Sensory issues* not withstanding, if you can stand to brace an unstable joint, don't be afraid to explore it if you are living with #HSD or #hEDS.

*I cannot abide a brace for the SI joint, even though I would benefit from wearing one, because it's sensory hell.

I hate that my muscles are always so stiff and sore and heavy. It’s so frustrating and uncomfortable all the time.
#chronicillness #mecfs #pots #hsd

It's going good, but it would be nice if some more jumped on, especially since Emi just open international shipping:
Hotzone, a heist skirmish board game in the Hc Svnt Dracones universe by Emily Fraser, via https://www.kickstarter.com/projects/wgfproductions/hotzone-a-heist-skirmish-board-game-0

#Kickstarter #HSD #HcSvntDracones

Knobbly thumb joint got more obvious last night. Distinctly stiffer than the other thumb and a bit painful too. They weren’t painful before (the other knobble is my middle finger, both left hand). The other one is worse than I remember too.

At least it doesn’t affect typing. I couldn’t think which fingers I use to type and now I see it’s the middle of each hand, at least on the iPad. Don’t need to bend my fingers to type 🤷🏻‍♀️

#arthritis #joints #hypermobility #HSD

Favorite sleeping position with EDS/hEDS/Marfan.
Seen on FB (ehlersdanlosboy).

#eds #hsd #heds #marfan

Diagnosis: Hypermobile Ehlers-Danlos Syndrome

After self-diagnosing, I got an official diagnosis. The victory of the official diagnosis was upstaged by the foot trauma two days previously, which I now know is a broken bone. However, at lest it’s in the same limb as all my other orthopedic trauma and severe arthritis. That’s really my saving grace right now — it’s a familiar injury. Adding another new mystery set of symptoms would be less welcome than rehatching an old burden.

Anyway, back to the art. I love some of the light interactive properties here that are hard to capture in a scan so:

 

Reflective properties close up, gold paint in the eyes, green metallic reflection for the dark around and in the eyes. The shimmer (ultra fine glittering particles) in the green ink are vibrant blue, and in the blue zebra stripes are color shifting, right now a rose.

Metallic version of the hardware in my leg — I looked at my own x-rays for reference!

Final close up.

https://www.illmarks.com/diagnosis-hypermobile-ehlers-danlos-syndrome/

#art #bodyHorror #bodyMapping #chronicIllness #connectivetissue #connectivetissuedisease #eds #ehlersDanlosSyndrome #ehlersdanlossyndrome #heds #hsd #hypermobile #hypermobileEhlersDanlosSyndrome #hypermobileehlersdanlossyndrome #hypermobility #hypermobilitySpectrum #hypermobilityspectrum #hypermobilityspectrumdisorder #longCovid #longcovid #medicalArt #MillionsMissing #pwLC #pwme

I Am Me ‼️🇳🇬✅👍♥️

🌼 #Sunday, #November2, 2025 ✨🙌
Happy 1st Sunday in #November2025 💙
“Always remember that your own resolution to succeed is more important than any one thing.” ✅♥️ #quoteoftheday #sundayfunday #NewMonth #SundayService #HSD #BahdlexEmpire #bahdlex

Symptom: Arthralgia and Arthritis

I need to pick a “job title” to describe the work I do here. I initially tried to make a poll with a plug in, but alas it didn’t work the way I hoped.

Here are some of the options I’m considering. Feel free to reply/comment with any or suggest your own!:

  • Health & Care Advocacy Designer
  • Mast Cell Artist Syndrome
  • Chronically ill-ustrating Health Advocacy
  • Plague Artist

Rejected (not great for professional use) options that I’ll share with you because I love you, but don’t tell my PCP about any of these, k?

  • Notorious Self-Diagnoser
  • Health Insurance Reform Enthusiast
  • Creatinine-level Checking Creative
  • Medical System Subverter
  • Bruh They’re a Totally Sick Designer
  • Mario’s Brother Appreciator

https://www.illmarks.com/symptom-arthralgia-and-arthritis-and-a-poll/

#art #arthralgia #autoimmune #bodyHorror #bodyMapping #chronicIllness #eds #heds #hsd #hypermobility #hypermobilityspectrum #longCovid #longcovid #mastCell #mastcell #mcas #medicalArt #MillionsMissing #osteoarthritis #pwLC #pwme #spondylitis #symptom #symptomVisualization #symptomtracking

#ELF scores week 13:

Ended games:
09.08.2025, 15:00 #BTH 31 @ 34 #ENT
09.08.2025, 17:00 #SRG 44 @ 3 #CCE
09.08.2025, 18:00 #WPA 36 @ 50 #VIE
09.08.2025, 18:00 #HEL 0 @ 77 #PAR
10.08.2025, 13:00 #HSD 7 @ 40 #NOR
10.08.2025, 13:00 #MBR 27 @ 30 #MUN
10.08.2025, 13:00 #FGY 28 @ 21 #PRA
10.08.2025, 16:25 #SRT 24 @ 34 #RHE

#EuropeanLeagueOfFootball #ELF #ELF2025 #ranELF