Heds - Blog Posts

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.

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!

I’d like to be able to stretch without feeling my bones shifting under my skin thanks

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

“You’re too young to be so tired”

Madame my brain is melting out my eyes from exhaustion, will you shut up

“You’re too young to be in pain”

I will end you.

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?

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!

Casually remembering when a classmate mentioned something about burning easily in the sun and I said “pale skin gang” and they paused and said “no I’m definitely paler than you” and pulled up their sleeve.

Now I didn’t mean it as a competition, I feel that’s obvious from the statement, but I plopped down my milky, semi translucent arm and stared them down.

“Holy shit, you could be a vampire”

“Pale skin gang, we all burn together”

Mind you, I can see my veins from my shoulder all the way into my hands

But the nurses can never find a vein that works

Damn you rollie veins

My foot has been hurting for the last five days and is making it agonizing to try and do my PT.

Nothing looks wrong, it’s not a joint (I think?)

It doesn’t hurt all the time but if I bend my foot up towards my ankle it hurts or point it.

This is weird

So excited to have a flare up during my EOC exam tomorrow and not being allowed to have any of my diy treatments because the school refuses to accommodate me, so fun!!! /src

But seriously I had a flare up in the middle of my SAT and it caused me to not be able to finish a section due to incoherency and pain. Literally just let me have my salty beverage…..

For those out their with heds that use mobility devices, what device do you use and what was the point that made it a need ? I’m so tired and I’m pain on the daily in either my hips, knees or ankles (and that’s only below the waist)

I’m dependent on my parents for getting care and they are relatively supportive as disability is common in our family but my mom seems reluctant to even discuss the possibility that I may need an aid.

Any advice?

(Also going to the doctor this week to ask about symptoms of pots I’ve been having for years and stomach problems)

So I only got diagnosed last week right? I’ve been in pain for years but I never had a name for it that explained the extreme it would go to.

Well today I was walking around with some of my friends getting ready for the show we are putting on and I open the door for them and right after they walk in my hip shoots pain and I hit the deck, unable to get up because of pain.

I don’t know wtf happened, but my hip has hurt ever since regardless of position, sitting, standing, laying

So the prop department is lending me a cane, but can anyone tell me what could possibly have happened?

Hey can anyone who has heds tell me if binders or corsets help with back pain? I’ve been having horrible back pain more frequently recently and I don’t have a way to ask my doctor for recommendations because I don’t have access to chat with him.

Please I’m in so much pain