#ints original

[i-need-that-seat]

I hope this isn't a weird ask or anything but I found out about hypermobility syndrome today and now I'm thinking I might have it... I score 5 on the Beighton Scale, maybe more because I can't tell if my knees/elbows are unnaturally bendy, and I sometimes get joint pains that I've always thought were because of bad posture but now realise might be bc of hypermobility... do you have any advice for a scared 16yo? pointers on possibly getting a diagnosis, thoughts on if I might just be paranoid?

First of all, push paranoia aside. If you feel you have symptoms, you can (and should, if you want to) explore this. Find a doctor who has heard of hypermobility/EDS. This could take a while, but I know others have had luck with rheumatologists, physical therapists, and geneticists. If they can’t give you a diagnosis, they should be able to point you to who can.

Also, self-dx is fine! Do some research of your own. Even if you’re going to see  a doctor, arm yourself with knowledge so you can best advocate for yourself. You’ve already tested your own Beighton, so you’re on the right track. Use tumblr to search for hypermobility, EDS, etc. People post articles, research papers, experiences, etc. Do any of them sound familiar? Reach out and see what you can learn.

It’s possible, as you may know, to have hypermobility without EDS. If you’ve got bendiness and some minor joint pain, you’re a pretty good candidate. Listen to your body and figure out what makes you the most comfortable. Stay hydrated and take care of yourself.

And don’t forget there’s a whole community of us out here on the internet. Find some support groups on Facebook, follow people on Twitter and Tumblr and Instagram who speak to you and your experiences. Welcome to the best group you never wanted to join.

[i-need-that-seat]

I am out of Gatorade and having a horrible POTS flare

Here's what happened: my coworker went to the dollar store on her lunch break yesterday and decided to get everyone a box of hot tamales. I LOVED hot tamales in high school but haven't had them for years for several reasons. It was such a thoughtful gesture, so I opened the box and had a handful. My stomach has been out of commission for over 24 hours. My heart rate has been elevated. I barely slept last night. Three years ago, I worked hard to cut back on caffeine and completely cut out processed sugar in the form of candy. I did this because I realized that my POTS flares were tied to my sugar and caffeine intake, and I needed to prioritize my healthy, my body, and frankly my safety. Three years without candy means that when it comes back, it will WREAK. HAVOK. I've told this coworker before that I can't do candy. That the occasional cookie or chocolate is fine, but I have to do it in moderation, with care and control. She thought she was doing something nice. She had no malicious intent. But please - if someone tells you they can't eat something, don't give it to them as a 'treat.' This isn't a diet fad thing of "oooh, candy, I'm being so BAD." This is about the health of my heart. You have no idea what that temptation is like. I failed, and now I'm hideously sick.

[i-need-that-seat]

I don’t know what my body is doing half the time; I just work here.

[i-need-that-seat]

You don't trust doctors because an eye doctor doesn't know about a mostly skin and joint issue? Really.....?

If you were paying any attention at all, you’d see that that was a post I reblogged, not my own. I’m not sure what conditions the OP has, but it really doesn’t matter.

So many of us have had the experience of a doctor looking up our symptoms right in front of us. Asking us to define medical terms. Asking us to spell things out. Asking us to be their teachers. In addition to the emotional labour, it doesn’t really instill confidence.

My mistrust of doctors comes from a host of places and experiences. This is just part of that.

Next time you want to be fucking rude to a stranger, at least have the decency to get off anon.

[i-need-that-seat]

A year and a half ago, I noticed a lump on my chest. It was painful and didn't seem normal so I went to the dermatologist. She said it was nothing to worry about and that it would go away on its own.

It didn't.

This past summer, I went back to the same doctor and she was perplexed. The lump was no longer painful but it was definitely still there. She was glad to see it hadn’t grown at all, but expressed concern that it might get bigger. She wrote me a referral and told me to get it checked out by a surgeon.

The surgeon was prepared to take it out in a routine procedure until he learned I had Ehlers-Danlos Syndrome. He was hesitant to operate without knowing how the collagen in my skin would react, so he gave me a shot and told me to come back in six weeks to see if it went away.

It didn't.

In October, I finally had the lump removed in a surprisingly painless surgery. The recovery, however, was not so painless. I was told that for at least 2-3 weeks, I could not bend, stretch, or twist. I couldn’t exercise or do anything that might increase my heart rate, including playing competitive video games, watching exciting football games, or even climbing the stairs at work.

Today, I went back in to the hospital and finally got the definitive news that the lump was not cancerous or even pre-cancerous. I am still healing from my surgery but am now clear to return to regular activities, including cardio (oh, how I've missed you!!!). I still have to stay out of the pool for two more weeks, but I'll survive that. Honestly, I think I can survive anything. 

[i-need-that-seat]

I'm a walking medical mystery.

Except I'm bad at walking, so I'm more like a "lying down medical mystery."

[i-need-that-seat]

Chronic pain is not linear. Chronic pain is not predictable. Chronic pain is not easy.

Sometimes, you are simultaneously the voice moaning in pain and the voice soothing and reassuring yourself. You will survive this. You always do.

Yesterday, I fully subluxated my knee. I was already in a flare and working with a loose hip joint, but I chose to wake up early and do some PT/cardio before work anyway. During push-ups, I felt my kneecap loosening and moving until it finally swiveled to the side of my leg. It’s been painful and unstable for over 24 hours now.

It’s been over a year since I’ve had a full subluxation and over a year since I’ve used my wheelchair. Of course I thought I was making progress, but did I seriously think that I was... healed? That this would never happen again?

Ehlers Danlos is a degenerative disease - there was always going to be a peak, a plateau to my progress, before my ability and strength levels started to decrease again. It just hurts that it’s all happening so soon after I thought I was getting better, but I have to be realistic about it.

I didn’t cope with the return of pain from a sudden subluxation very well yesterday. I closed myself off to others, literally and figuratively, feeling sorry for myself and ignoring texts and tasks. I didn’t sleep well. I still feel pretty bad this morning, and it’s still difficult to put my full weight on my left leg... but I’ll survive this.

I always do.

[i-need-that-seat]

Sometimes the real disability struggle is getting your camera set up to take #hospitalglam selfie-portraits with limited table space in the clinic room.

But sometimes it’s when you go into the hospital for what’s supposed to be a routine check-in and leave needing to schedule a minor surgery.

It’s been a weird day.

image description 1: a woman [me] wearing a hospital gown and standing next to a patient table. My left hand is on my hip and my right arm is resting on a speculum light. I’m looking over my left shoulder and my eyes are closed. Behind me, several medical instruments are hanging on a beige wall.

image description 2: a woman [me] wearing a hospital gown and sitting on the patient table. There is a large sheet of paper covering my lap. My right foot is in the stirrup and my right arm is behind me, propping me up. My left elbow is resting on my knee with my left hand in my hair. I’m looking backwards over my right shoulder.