Ehlers Danlos Syndrome - Blog Posts

I find it really funny to say that I'm a trans woman who has had multiple ultrasounds and an epidural and it will just confuse the hell out of some people. Like no I can't get pregnant, but believe me I'm definitely trying to.

I'm slowing coming to the realization that people truly only get their blood drawn maybe once a year. I got it done 6 times in November (they all had negative test results).

They told me the nurse was gonna come back in and discharge me. I waited an hour and ten minutes and they still didn't so I left. It's so frustrating I feel forgotten because I'm this young person who "can't be in that much pain".

So far just for my LUQ pain I've had

2 urgent visits

1 online visit

2 ER visits

1 primary visit

2 urine tests

2 Blood Draws

1 IV

2 X-Rays

1 CT scan

2 wrong diagnoses

1 antibiotic that didn't help

And they still don't know what it is. This has been going on for almost a month and it's exhausting. I'm in pain

The troubles of chronic pain/illness.

For 5 hours I was between urgent care and the hospital for side pain. I've had it for a week now.

I did X-rays and a CT scan.

They sent me home with nothing wrong with me.

I hate everything, I am still in fucking pain.

I'm constantly explaining to people, how my skin/joints/bones work. Sometimes people believe me and let me rest through weirdly specific things. Other times they think I'm exaggerating about my constant dislocations and intense pain 24/7.

It's a constant struggle but aome abled people are nice, and genuinely consider your health, I promise!

What not a lot of people know about asthma is that different substances trigger it for different people. And because of this sometimes people without asthma won’t believe you when you tell them something is hurting you.

Like I’m fine around weed smoke and can even take a drag or two off a joint but if my brother catches even a whiff of marijuana smoke he’s already using his inhaler.

I can’t be around floral perfume but some of my friends with asthma can be. I can’t be around tobacco smoke but another friend of mine with asthma is a heavy smoker. Some people can run and exercise fairly easily. If I start running I get an attack fairly quickly.

Some people get attacks more easily in the fog. For some people wet weather helps. Some people get triggered by dust. I don’t. Someone I know does.

So just because your sister with asthma uses perfume doesn’t mean you can spray a bunch of it near your coworker who’s told you it sets off their asthma.

Believe people when they give you info about their chronic conditions, basically.

A modern One Piece Au but Luffy has ehlers danlos syndrome.

He loves to get in fights despite it always ending up with him needing half a pill bottle of Tylenol, five servings of meat, a 4 hour nap, and a joint pushed back in place by Chopper.

Every gang knows him as that ‘stretchy, rubber guy’ because Luffy will purposely stretch his skin out to scare people even though it bruises later.

All of his finishing fighting moves leave him with a dislocated shoulder that Zoro knows how to put back in place after Luffy walked him through it one time with the worst instructions ever.

“Just push it back, quick! I can’t move my arm, c’mon!”

it just registered to me that i might be physically disabled, but im scared to say it outloud

rant below the cut

my dad has EDS and i have all the syptoms, just less seveare, ive spent over an hour in the bathroon about to cry in pain, my shoulders almost constantly ache, one time a few years ago it got so bad so suddenly i felt like something was broken, for a couple days, my wrist and ankle amost are always just, uncomftable and ive been so nauseos i couldnt sleep all night cuz i was dry heaving because i got slightly sick, i use my dads topicle pain medicine on my wrist consistently and ocantially shoulders, hell ill get nausos if i drink to much to fast

but im still scared to say im disabled because unless its a flair up i can do most things (or im being stoped for mental reasons not physical),

but ive had times where i couldnt breath becuase my girl scout troop was hiking to fast, i cough like im dying when im fine,

i just started using a wrist brace my parents already had for my right wrist and it helps so much, i might need to fing the one for the other wrist and i also might need to get ankle braces, but i feel as though im faking it even though i know im not

please someone help me feel a but better about this

No way I was ever a competitive gymnast

Anyone else sometimes forget the level of disabled they are because it's so normal to yourself?

Sometimes i'll remember something i used to do, something i was able to do and that i definitely wasn't thinking about and i'll have trouble believing it. I know i was walking up and down stairs multiple times a day everyday and oftentimes running them but. It just doesn't true. Like, what do you mean i used to walk a kilometre to school and back every day when i was only half my size?? That can't possibly be right? But somehow it is! I used to jump on those garden trampolines for hours on end. How???

Has anyone cracked the code to not being completely exhausted 24/7? I feel like I can only get my obligations done before it's right back to bed

How'd I dislocate my hip by sleeping 😭

Anybody else with ehlers danlos syndrome have sway back?

Idk how to fix it, but I was wondering if anyone else does this

Any other chronically I'll people have the experience as a kid where they just Didn't Feel Good? That kind where you couldn't describe your symptoms, or pinpoint anything specifically wrong with you, other than just feeling bad. That definitely should've been more of a red flag.

sometimes being chronically ill is laying on the floor in pain while the cat tries his very best to help

Yeah... text to speech has kinda saved my life in that area

My hands hurt a lot too. So like. Limited ability to be on my phone and type or to even play games. Thanks ehlers danlos and fucked up joints.

The sarcasm here is fucking hilarious 💀 whenever I inevitably end up using mobility aids, imma just tell them my doctor told me to, bcs she did. Even if your doctor denies you a mobility aid, people get uncomfortable if you just say a doctor made you, so you could always just make stuff up.

You shouldn't get a wheelchair, walker, cane, shower chair, or any kind of assistive technology mobility aid because then you might become dependent on them. Just like how you also shouldn't get glasses if you have bad eyesight because then you might become dependent on those.

For instance, if you end up stuck using corrective eyewear, you could actually lose your ability to tell what things are even when they are extremely blurry! You need to get used to having migraines from seeing unclearly because if you wear glasses all the time, you are basically giving up!! You don't need to see things coming at you from far away! You just need to get good at dodging, and if you can't, then you have no one to blame but yourself!!

For example, I read a really heart-worming article recently about a girl who was stuck using glasses - just absolutely, tragically trapped in her eyewear from dawn to dusk, even though she was good and never ever complained; and I heard she trained herself to discern the blurry faces of her loved ones with 60% accuracy! - she was even able to walk down the aisle at her wedding WITHOUT forcing the discomfort of seeing a woman in glasses on all her guests!!

Sure, she had to give her vows with a splitting headache, and she couldn't see her husband's expression when he said "I do," but overall, SO inspi-ration-al!!! So up-lifting!!

(She didn't even have to use a seeing eye cane, which would have been the worst-case scenario, obviously, because she worked hard to make sure she looked LESS disabled, not MORE disabled!!! Everyone knows blind people exist solely to be a cautionary tale to sighted people!!)

Also, did you know some people get glasses when they only need them a little bit?? How selfish of them! Sure, there's not a shortage, and an increase in demand would result in overall increased accessibility to glasses--but emotionally it's like taking glasses away from someone who needs them more! After all, if everyone who needed glasses got them, then...... um...... more people would have glasses! Which is probably bad!!!!

I also had a friend who was trapped in glasses who saved up all her money for laser eye surgery, and I don't know why everyone doesn't just do that! Sure, some doctors say some people don't "qualify" and it "won't help" those people, but that's why you can't give up!! You don't want to be one of those people!

After all, what's the worse thing that could happen with an unnecessary laser surgery to the face that comes with crippling debt??? It's worth the risk to gain your FREEDOM back, and I'm so proud of my friend!!

Tragically, she did die later that year while driving Uber and squinting at street signs, but at least now I know my friend is finally free from the shackles of her terrible eyesight. #ripAshley #rippedAshley #justripit 😌😌😌❤😇😇😇

And that's why you shouldn't get used to using a mobility aid!! Because, like glasses, they are inherently embarrassing to be seen with; and - like glasses - it is more noble to silently suffer than to depend on unnatural technologies that force you to rely on them!!! (Besides, everyone else will be SO much more comfortable if you look normal!)

I hope you learned something today. 💖

Random vent:

I legitimately do not know what is going to happen to me in the future. All I want is to be a firefighter, but two days into emt school and I'm already having a flare up. We went to visit the fire station today, and I nearly passed out just from standing still. I was always such an athletic child, and everyone expected that I would kick ass in this field, yet here I am, struggling to stand. I already knew that I would have a very short, painful career, but now I don't know if I can do it at all.

Being a disabled person going into the medical field so so weird. Other disabled people are saying "fuck medical practitioners" and I'm like "...sorry? Idk what I did, but srry ig"

Question for others with hEDS, specifically those who use a wheelchair:

How does it not hurt your shoulders? I have hEDS, but don't use one, and just about anything hurts my shoulders. I was wondering how moving your chair around wouldn't hurt. Thanks!

"looking forward" 18x24 oil on canvas

this one's about how easy it is to get depressed while chronically ill & disabled, and how i combat it by "looking forward" (😉) to the future and the good things it may have in store for me.

i'll forget i have EDS and then I'll manage to somehow sprain my ankle sitting down in bed??

Its Ehlers Danlos Syndrome awarness month and I would like to be LESS aware, please and thank you.

okay weird question what should i do if i can't bind my chest because of connective tissue issues?

Not my dad having called me a slur used for physically disabled people anytime I was injured or in pain during my childhood, long before I was diagnosed with my disability. I didn’t know it was a slur at the time.

Not me assuming that after I actually was diagnosed with a physical disability that he would stop calling me that out off respect or at least ask me if I mind. No one really cares about a child understanding words that are meant to be used as an insult because if they don’t teach them they’re an insult they think they can get away with it. That’s not good.

But I was having a bad pain day and my dad once again called me the G word, which not everyone knows.

He didn’t say it in front of anyone other than me and my mom, and he didn’t say it in an insulting way, however he has a tendency to say rude and cruel things with no intention of them being either (or with the intent but not caring)

I don’t actually have issues with the word itself on reference to me. Gimp(y) and Cripple aren’t words that I am afraid to use to describe me but I don’t need my father to assume I’m okay with using it as an adjective.

I wonder how he’d react to me referring to him as it? Another chronic pain haver who happens to use a cane on occasion.

Hmm

Hey y’all!

I’m about to make a website for an organization I’m creating to help those with hidden/invisible disabilities and illnesses.

I want to be able to make this website accessible for people with all types of conditions and wanted to reach out on here to get any suggestions from people with those types of conditions.

I also created an Instagram for the organization but it’s still in the very early stages so I won’t be sharing yet…

Let me know if you have any suggestions or questions!

So recently I’ve bee considering applying for a balance and mobility support/service dog, but I want a bit more information from people who actually have them and aren’t paid to give a good review

(It’s also alarmingly difficult to find organizations that train balance and mobility service dogs)

I understand the financial drain and the time you need to put in to make the team function properly. I understand that a service dog is considered a medical device and not a pet, but they still need love and support and breaks like all loving things should. I understand that given my allergies a poodle would be the best option but I could also push for a less common breed.

Does anyone have an info, tips or blogs to recommend?

I really want to be independent once I move out and I really think a balance and mobility support dog would be helpful.

So I have a question for others with diagnosed hypermobile ehlers danlos syndrome

When I was diagnosed, the doctor said to me that there are no pain meds that can help with my pain that he is willing to give me because the only ones strong enough to work are highly addictive or can make you “high as a kite” in his words.

Has anyone else been told this? I mean it’s true low level pain meds don’t work on my joint pain but still, is there anything?

Yo I also have over pronated ankles and wear insoles and hypermobile eds, but I have been wearing these insoles for a decade and I was only diagnosed with eds earlier this year. And they’re custom insoles from like a military doctor because of how messed up my ankles are cause they normally only do those for veterans and not dependents.

How did it take this long for me to be diagnosed?!?!?

I’ve been unable to get the insoles I have been using for years and went with a “recommended brand”.

Of course I spent a whole month trying to keep my knee in place before it occured to me that the new insoles were not doing their job.

Anyway, I now recommend PCSsole Heavy Duty Arch supports for over pronation, because I can walk again.

Just remembering the times I’ve actively been falling asleep in front of a doctor due to my chronic fatigue but then they still don’t do anything but tell me I need more sleep

Which isn’t unreasonable but I am a student. An AP GT student who falls asleep during class as well so I don’t get the notes or miss the lesson so I have to come in after school to get notes (or dig around the online classroom for the teachers that actually post their notes) and then have to teach myself the lesson.

Then I have to do the homework which is difficult for me to focus on (we think it’s undiagnosed adhd given other symptoms) and trying to complete the assignment takes a minimum of an hour. Give or take given exhaustion and falling asleep reading the questions, pain in my wrist, fingers, hands, etc, or having to do other things.

Then multiple by the four educational classes I’m in (thank god French doesn’t have homework)

I get as much sleep as I can

All this to say, I’m glad it’s summer and I’m glad I was finally diagnosed (maybe collegeboard will finally consider accommodating me)

This is kinda weird but I’m trying to figure out how weird my ankles actually are. I have over-pronated ankles but high arches, which apparently is strange because flat feet cause over-probated ankles and high arches cause under-pronated.

Over-pronated ankles look like ) (

Under-pronated ankles look like ( )

And normal ankles are straight | |

Please reblog if you care to so I can get a larger sample! It would be much appreciated!