#ehlersdanlossyndrome — Public Fediverse posts

Awoke with a headache
Instant tight rope walk
Between things done and undone
Between a body cooperating and not
I want to contribute
I want to create
But everything
Between my ears ache
And tears come too easy
Maybe it’s just a headache

Maybe…maybe…maybe

Maybe it’s another sign
That I’m circling the drain
Into a flare
But nothing to fear
I just lost everything last time
How many more pivots can I manage?
How much more hope can I fabricate?

#poetry #chronicillness #disability #ehlersdanlossyndrome #hope

With the exception of today and Friday, starting this past Monday, I will have at least one doctor appointment each day til we move. And then at least two the week after.

Sigh.

#ehlersdanlossyndrome

My stupid sacroiliac joint badly needs to click just on one side, I feel like I want someone to punch it in exactly the right way.

EDS people, how do you get your SI joint to click?

I DO NOT WANT TO HEAR FROM PEOPLE WHO DON'T HAVE HYPERMOBILITY/EHLERS-DANLOS SYNDROME. If your reply starts with "I don't have hypermobility/EDS but", I know you mean well and want to help but I will just block you.

#EDS #EhlersDanlosSyndrome #hypermobility

Today I saw the allergist who deals with MCAS. She thinks she can fix my face.

#facewatch #ehlersdanlossyndrome

WOW

I'm reading a book published recently.

Fiction.

The villain has Ehlers Danlos Syndrome!!

First of all, weird reading about EDS. Doctors don't even know wtf that shit is.... but now I can roast them for it even harder: "This random fiction author knows more than you!"

Second, way to make us the villain! We already struggle with credibility!

#ehlersdanlossyndrome
#eds
#chronicilness
#reading
#books

OH FOR....

Being allergic to my MEDICAL ALERT BRACELET is a NEW FUCKING LOW.

#chronicillness #ehlersdanlossyndrome

Now on to calling the insurance company to ask exactly who there thinks they know better than my doctor.

#medical #health #insurance #healthinsurance #disability #chronicillness #ehlersdanlossyndrome

This is really niche, but if you have Ehlers-Danlos syndrome, Loeys-Dietz syndrome, Marfan syndrome, or another connective tissue disorder, this guidance from the National Academies explains the possible impacts, as well as when those impacts are considered disabling under the Social Security Disability policy.

Learn more: https://doi.org/10.17226/26431

#ConnectiveTissueDisorders
#EhlersDanlosSyndrome
#DisabilityAdvocacy

Argh, this is gonna be another Mount Bruise on my arm... I know I have a connective-tissue disorder but does it have to get that ugly each time?

Also, do the people working at medical places don't realize it sounds reproachful if they complain to me about my rolling veins or my low rib cage. Sure, hold on, I'll just tell my body to behave for you...

#chronicIllness #EhlersDanlosSyndrome

My disability impacts my proprioception… meaning I’m constantly bumping & banging into things.

A few weeks ago I developed a nasty foot infection, and two days ago I sliced open my hand cutting the gauze FOR the foot infection.

Chronic illness is no joke.

If I owe you a reply or an email, this is why I’m late.

My gauze paw is slowing me down!

PS… when dealing with chronic illness it’s important to have a well stocked first aid kit! Mine is a first aid bin… it’s one of those large underbed storage containers. Having instant access to emergency supplies is a necessary accommodation to improve quality of life.

#chronicillness #disability #eds #ehlersdanlossyndrome

Turning Pain into Purpose: Could your deepest suffering be your hidden superpower?

https://therisingmuse.com/2026/06/08/turning-pain-into-purpose-could-your-deepest-suffering-be-your-hidden-superpower/

#3goodthings #threegoodthings

1. I got tickets to see Social Distortion/Descendents at the Stone Pony in September.

2. I made my husband watch Airheads. He's from LA so of course he's like, "I've been to all of those locations." OK COOL THANKS.

3. The doctor who deals with my Ehlers-Danlos Syndrome recommended that I microdose a GLP-1 for the heart and musculoskeletal benefits. That comes tomorrow.

#music #punk #ehlersdanlossyndrome #movies

Answered an email, then tried to make it a hat trick* by calling the allergist, but for some reason that office is always closed when I call. It was farking 330!

*next time I'll go for the Gordie Howe hat trick, which is a goal, an assist, and a fight.

#mentalhealth #eds #ehlersdanlossyndrome #hockey

I've been dreading calling the dentist because I had to ask him a Hard Question.

No one answered, and I was so mad. I finally got the damn guts to call and ask Hard Question, but then, ah ha!

I said to myself I says, "You can ask Hard Question to not a human, but a machine."

Message left! Hard Question asked! I can cross this off my to list from like last farking year!

#mentalhealth #ehlersdanlossyndrome #eds

Today the new functional medicine doctor I'm seeing described me as being in "multi-systems failure" and I laughed my entire ass off because she is *completely* correct.

So we're doing some tests.

Thankfully, she is conversant in EDS. Actually, she was able to speak more intelligently to me about EDS than anyone except the EDS doctor.

I'm happy.

#ehlersdanlossyndrome #chronicillness #adhd

Last night was a very fun night full of hypnagogic and hypnopompic hallucinations. Whee! Thanks, #ehlersdanlossyndrome !

OH BOY DO I LOVE BEING DISABLED

Finding emergency specialized care days before Christmas is nearly impossible. And I'm in PAIN.

I have an appointment tomorrow with the wrong kind of practitioner but he may be able to help. He might make it worse. I guess we'll see!

#chronicillness #disability #ehlersdanlossyndrome

I keep forgetting to mention that my doctor diagnosed me with #EhlersDanlosSyndrome this week.

I've suspected for a while, and my massage therapist has been sure for a couple of years.

Like my #ADHD diagnosis two years ago, this explains SO much.

Including the frequent athletic injuries. And the nonstop back pain. The tennis elbow. The ankle sprains, inguinal ligament strains, neurocardiogenic syncope, costochondritis, premature ventricular contractions, memory problems....

1/2

This week I started #75hard because I need some movement and structure in my life.

However, the idea of doing two major workouts in a day is stupid. Anyone familiar with exercise science will tell you that you need downtime.

So I decided to make each one a very easy workout.

It ain't poppin'.

I have #ehlersdanlossyndrome so even that isn't working for me.

We're changing it to one easy workout, one yoga session. And no sessions on the weekends.

Because yall, I feel like shit right now!

Symptom: Mast Cell Itching

https://www.illmarks.com/symptom-mast-cell-itching/

#allergicreactions #Allergies #allergy #art #bodyHorror #bodyMapping #buildingSafety #chonicillness #chronicIllness #claws #eds #ehlersdanlossyndrome #environmentalIllness #environmentalillness #fingers #formaldehyde #heds #hypermobile #hypermobility #hypermobilityspectrumdisorder #immunology #itched #itching #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastcell #mastcellactivationsyndrome #mastcelldisease #mastocytosis #mcas #medicalArt #MillionsMissing #nails #POTS #prop65 #publicHealth #publicHealth #pwLC #pwme #scratched #scratching #scratchy #severeallergy #vocs

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

Fuck any doctor that charges almost a thousand dollars for an hour and a half (and one portal message) of their time, ESPECIALLY when that doctor deals with a rare disability that isn't all that rare.

Newsflash assholes: almost no one, percentage-wise, can afford that.

I can. I absolutely can. And I'm still violently pissed off about it.

#ehlersdanlossyndrome

I just said something about myself that I would N E V E R say about someone else. WTF. DO BETTER DICKHEAD.

Yeah I need to work on positive self talk.

#mentalhealth #chronicillness #EDS #ehlersdanlossyndrome #ADHD

Curious about my Spinal Cord Stimulator? #chronicpain #chronicillness #raredisease #ehlers #ehlersdanlos #ehlersdanlossyndrome #blog #Writer #Spinalcord #stimulator #trial #recharge #baitandswitch #medtronic #painclinic #paindoctor #sales #uchealth #paincontrol #surgery #minisurgery #nervepain #lies

http://invisiblymisdiagnosed.com/2025/09/13/recharge-my-spinal-cord-stimulator-with-me/?utm_source=mastodon&utm_medium=jetpack_social

#invisiblymisdiagnosed #ehlersdanlossyndrome #zebra #healthcare #protyusagendher #Blog #Blogger #health #WealthCare #diagnosis #treatment #pain #process #experience #Anthropology #Ethnography #Autoethnography #selfcare #Healing

#Treatment

http://invisiblymisdiagnosed.com/2025/09/12/brain-and-spine/?utm_source=mastodon&utm_medium=jetpack_social