#ceds

[thephilosopherspetcat]

Just because a certain, or popular disease "fits" your symptoms doesn't mean you have it.

I get that it can be hard to get a formal diagnosis, but until you do, PLEASE DONT SPREAD YOUR PERSONAL EXPERIENCE AS FACT AS FAR AS THE DISEASE GOES.

self-diagnosing for *personal* reasons is perfectly fine. if it helps you to just run with that diagnosis, privately, until you can have it confirmed or find the actual thing wrong with you, then go for it!

But please stop shouting to the world:

"Oh I have EDS and I experience xyz because of it!"

Because you are changing the perception of the disease to the public (healthcare workers included) by claiming that diagnosis, and you might be totally wrong.

• specifically for hEDS, I know so many people who have DIED from it and in the same day I hear a doctor tell me "EDS is just a tiktok trend..." and an hour later 50 comments on a tiktok video telling a stranger with hyperextended elbows that "you must have EDS! You're so flexible!" as if hEDS is just a flexibility issue and not the literal proteins in your body being malformed, rupturing organs, paralyzing intestines, and having your brain literally fall out of your skull.

Peace & Love,

a girly with cEDS who just read 20 posts under the ehlers danlos tag with varying degrees of "basically i have eds but also ive never actually been told that by a doctor, but here's my eds advice" (and a lot of that advice is actually horrible to give to someone with a collagen disorder).

[barksenji]

I've been pondering why I'm drawn to Killer as a character. I think he somehow mirrors my feelings about my body and health.

When considering disabled characters in One Piece, like Shanks or Kid (though there are more examples, maybe even better ones, lol), their disabilities play such a minor role in their lives that you might forget they even have one. It's not inherently negative, but it makes it challenging to connect with them in that sense because they don't truly experience the struggles.

Surprisingly, Killer stands out among the characters, showcasing the profound impact that eating the SMILE fruit had on him. He vividly portrays the hysteria and fear that can arise from losing control of your body, a part of yourself, whether through amputation or more abstractly, the loss of independence or freedom.

Killer is condemned to a lifetime of laughter; the effects of the SMILE won't be cured (maybe eventually they will, but I don't know). He copes, yes, but it's constantly going to be there. Sounds familiar? If you're chronically ill, you know.

Moreover, as someone dealing with dysphoria, there's a strong identification with Killer regarding the mask. The sensation of your face feeling so alien, prompting a desire to hide, isn't foreign to me; plenty of times I've wanted to put a bag over my head so I'd be able to just stop looking at my face.

In essence, Killer's character, encompassing his loyalty and more, evokes a powerful reaction in me. Yeah it sounds cheesy af I know, I'm autistic, what do you want from me, lol

[firminfollowing]

Me when my chronic disability is actually chronic and disabling:

[Image ID starts:

a white cat is screaming with an open mouth and it’s head turned to the sky.

Image ID ends]

[gleditsia-triacanthos]

because i feel like most of my posts are critical, here are some fun (?) things about having classical ehlers danlos:

1. the party tricks, including but not limited to:

- stretching my skin. my go-to technique is one hand on my cheek, one lower down on my neck.

- the splits.

- feet behind head.

- dislocating my shoulders. this sounds like hell, but it really doesn’t hurt too bad anymore and the reactions are priceless.

- any number of things with my digits. the only person who’s had me beat was a ten-year-old i babysat; she was able to bend her thumb BACKWARDS to touch the outward part of her wrist, then roll it in a full circle around.

2. success in performing arts. said party tricks, but paid.

3. i can tie my shoes without bending my knees.

4. dominating yoga classes (when i’m up for them).

eds isn’t an easy condition to live with, but there isn’t currently a way to change my COL5A1 gene. best to make lemonade when it’s appropriate.

if any other 🦓s see this, tap in!

[scifiisforgirlsgaystheys]

The only thing worse as a ✨💅chronically ill girlie💅✨ than being sick, is realizing you’re getting sick. No, this isn’t just allergies or a teeny cold or your period coming early like you’ve been trying to gaslight yourself into believing. This is a virus, and it’s about to get much worse.

And unlike most people with healthy bodies, you’re not going to be miserable for a couple of days but eventually fight it off. Your body is going to shut down. You are going to be in danger—go to the ER, be closely monitored, hooked up to dozens of machines and be drugged with dozens of medicines that trigger weird as fuck side effects danger.

And your usual symptoms related to your chronic illness, the debilitating ones that leave you in constant pain and fatigue, and render you a barely (if at all) functioning human being? Yeah those are about to get a hundred times worse. And they’ll distract the doctors because either

1️⃣ the doctors won’t believe you’re chronically ill (I can’t tell you how many times ER doctors have told me I can’t possibly have my ⁉️DIAGNOSED VIA DNA TEST⁉️ illness because “you’re only in your twenties, sweetie. it’s probably hormones or anxiety. 😘”) but still be concerned over these symptoms that aren’t related to your virus, and go down some rabbit hole, trying to treat the symptoms of your incurable chronic illness and ignore your current sickness you need immediate care for

or 2️⃣ tell you you’re not sick at all, and it’s probably a really bad flair up of your usual chronic illness (until of course the tests come back showing you’re positive for whatever it is this time, and then you’re back to option watered down version of the first option)

Oh, and insurance can only cover a teensy amount of the bill, so enjoy being thousands of dollars in debt 🤪.

I have never gotten a cold or flu or covid before and not been sent to the hospital by my PC or urgent care. On average, I am severely sick for at least two weeks, lose about ten pounds, and have a two to three month recovery period. This doesn’t include if there’s any additional complications like blood clots or muscle atrophy from being bed ridden.

Anyway, guess who just tested positive for the flu 😷♥️♥️🤣💅💅💅🫶💋

[sleeping-reverie]

Man I wish more was known about my specific gene and how it impacts EDS.

Everything I hear from everyone is different. It's it's own thing, it's classical, it's vascular, it's classical with more cardiovascular issues, it's classical AND vascular AND neither at the same time. Less than 1% of people with c or vEDS have my gene. And we don't know anything about what it does.

Idk. It's really hard sometimes. My current diagnosis is vEDS? (Emphasis on the ?) but that seems to change every time I talk to someone.

"Your gene is under vEDS in our hospital system so that's what it is."

"You have no history of aneurisms but aren't hypermobile enough for hEDS so we'll just say it's classical"

"We don't know anything about people like you, so we don't know what to expect."

I've read that people with my type tend to have arterial/aortic dissections and that's what it's known for. I got an MRA the other day and am waiting for my doctor to tell me how to interpret it but idk what to even hope for anymore. Feels like no matter what no one knows what to do for me.

Idk it's just so isolating yk?

[xxtowardsthesunxx]

I haven't posted much here in a while; wanted to post an update.

recently, my dr told me he now suspects I do have eds, rather than mctd. so now we're trying to get me into a rheum and have genetic testing done. the gp suspects ceds, while the np has some suspicion it could be veds. it feels really weird to have this curveball suddenly thrown at me, five years into my journey.

I'm trying to engage more in the online community, so this is my official introduction post for edsblr. so. hi 👋

[octobercowboy]

genetic testing appointment went well i think

i get genetic testing they took it from me today

in 4-6 weeks i should know if i have the types of EDS that they suspect

they also brought out heds form “just in case” but like half my symptoms don’t match so it’s a little odd.

[eddies-spaghetti]

i don’t like to make jokes about my eds much anymore bc im tired of people just saying that the only symptom is bendy joints.. but anyway my favorite part of having eds is that i can zip up my romper all the way by myself even though the zipper is on my back. my mom has the same one and always has to ask for help, but i can reach every part of my back easily.

[plague-parade]

i’ve heard people pronounce it multiple ways, and now im curious which pronunciation is most common.

[thephilosopherspetcat]

Happy last day of feeding tube awareness week, and for my last trick I will spill maybe the hottest take:

Feeding tubes aren't a big deal.

Its a plastic tube to your stomach or intestines that gives you nutrition.

Nasal tubes can be placed bedside. Uncomfortable? Hell yeah. Dangerous? No.

Surgical tubes are 1-2 incisions and a week of "ouch, fuck, dammit." Does it hurt? Yeah. Is it that big of a deal? No.

I don't understand the terror that doctors have around placing them. They keep this tool as the LAST resort for literally no reason. I know plenty of doctors who will wait until your organs are shutting down to even think about it. Mine did. And I have permanent liver damage because of it.

Starving is dangerous and serious and fucking terrifying.

A feeding tube is just a piece of plastic. Sometimes it rubs in annoying ways. You have to get it replaced. Some people get infections at the site. The tubing gets caught on door handles...

But none of them are being left to starve.

Truthfully, doctors withholding a treatment that is minimally invasive, with massive life-saving benefits to a person who needs it, is absolutely malpractice. That would be like refusing to give a heart attack patient treatment until their heart stops. The insanity is unreal.

[barksenji]

I am going to grab my colon and put it in a shredder, cook it and eat it like pasta.

I am going to put my uterus inside of a blender and use its remains as the fucking sauce.

The salt is coming from my tears because I. Swear. To. God.

I am going to cauterize my hemorrhoids with a clothing iron and then cut them off, there, you have the meatballs.

By this point my ass feels like anything but an ass and everything nearby looks like a car crash.

[disagigglebilities]

I still think about how my rheum told me I had hyperelastic skin bad enough it might mean I have cEDS and how my genetic doctor who specialized in genetic mental health conditions said my skin isnt hyperelastic at all. Maybe some day I'll look into actually seeing a doctor who knows what he is talking about

[stressfossil]

Thought I’d share the drawing I made to use as my discord banner! And two variations!

[flamingo--ing]

oh and i guess hai disability pride month

im waiting for a disability decision, i have multiple chronic and unknown conditions (but were thinking cEDS on top of my other known conditions) that have been disabling me since i was 6 so i appreciate the help a lot 💖

[nindurmeleth]

3 more weeks until I find out if I have small fiber neuropathy, 2 until my tilt table, and just after that is a 3 week long heart monitor and genetic testing for my ehlers danlos syndrome. With my personal and family history of heart problems is giving major classical/vascular vibes. It's all being done at Loyola which isn't my usual place so that's kinda fun. It's a bit of a hike though so I hope it's not the new normal.