Highest Rated Comments


ballerina2211 karma

It is much more common than it was thought to be, even 5 years ago. I was diagnosed earlier this year at 36 after a lifetime of subluxing / dislocating joints, random injuries, constant pain and exhaustion, and a whole 'nother slew of issues that no one put together before. A lot of people with EDS are turned away as drug-seekers or misdiagnosed with a hundred other conditions.

I 110% recommend that you find a geneticist to rule out the more dangerous and potentially fatal types.

ballerina227 karma

I'm a collection manager / registration specialist. I must say that you are quite often used as a case study in graduate-level museum studies degree courses, especially those on legal and ethical issues in museums. How does it feel to be so infamous to my community? FWIW, we are almost unanimously impressed and disturbed by your skills!

ballerina223 karma

Brave soul. I had all the exterior nerves stripped out of my head in January following a traumatic brain injury - it was years ago but wasn't until last year that anyone figured out what was wrong. I've got two three inch-plus scars on the back of my head and had most of the hair shaved off the back of my head. I'm only just back on me feet and starting to exercise again; I was a long-distance runner before but I doubt I'll ever be able to do that again. I'm still on muscle relaxants and some heavy duty painkillers.

So. Yeah. I'm sorry you have to go through this. Kick its ass.

ballerina222 karma

Nothing to ask. Simply saying thanks.

ballerina222 karma

Everyone expect surgical recovery to be tough, but I didn't expect that it would take so long. Then again, I had zero endurance, crap sleep habits, and severe nausea all the time so I started far, far back from the starting line. I'm astounded at how far I've come in five months, but I realise how much further I need to go. Frankly, feeling 'normal' makes me ecstatic. Being able to walk the dog by myself or go to the grocery store to pick up my medications seem like such minor tasks but I'm dead proud of myself. I'll work my way up to having a job again. Someday.

As to my blackouts, I don't remember ever losing consciousness. I only blackout fell once but that was because I was on a treadmill and I'm a gigantic spaz at the best of times. I guess the best way to describe them is that I'd freeze up momentarily or feel like I had a sudden unexpected system reboot. I hadn't noticed them for a while; it was only when watching a film one day that I realised "oh what happened? I didn't think I was that far into to film already..." None of them lasted long, or none that I can remember. They were brief moments that I just lost time. It sounds weird but I suspect your experiences are a great deal like mine. Mine have got much better, if it helps!