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Ehlers Danlos Syndrome - Blog Posts

2 years ago

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


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2 years ago

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


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2 years ago

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…..


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2 years ago

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)


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2 years ago

Tag yourself as a random element based on stupid logic

I'll go first

I'm fire because I snap crackle and pop


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2 years ago

HAHAHHAHAHAHAHA

*falls asleep in stats class hunched over my desk, with four missing assignments due to doctors appointments, falling asleep and missing notes*

Saw a sign at my high school saying: “ Don’t quit when you’re tired, quit when you’re finished.” Hahahahahaha, not all of us have that luxury


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2 years ago

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?


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2 years ago

hate hate hate it when adults tell younger people they're "too young to experience (x.)"

pain, memory loss, mobility aids, and disability are not exclusive to older people. young people can be disabled.

im nearly sixteen, and i have a hellish mixture of scoliosis and kyphosis. on top of that, i experience amnesia DAILY. my back doesnt hurt every day, and my brain doesnt refuse to remember important things just for you to say only old people can experience these things.


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