Case (![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
case) wrote in ![[community profile]](https://www.dreamwidth.org/img/silk/identity/community.png)
fandomsecrets2015-08-08 03:42 pm
case) wrote in fandomsecrets2015-08-08 03:42 pm
[ SECRET POST #3139 ]
⌈ Secret Post #3139 ⌋
Warning: Some secrets are NOT worksafe and may contain SPOILERS.
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Notes:
Secrets Left to Post: 04 pages, 097 secrets from Secret Submission Post #449.
Secrets Not Posted: [ 0 - broken links ], [ 0 - not!secrets ], [ 0 - not!fandom ], [ 0 - too big ], [ 0 - repeat ].
Current Secret Submissions Post: here.
Suggestions, comments, and concerns should go here.
Re: What injuries have you had?
If you've not been to a cardiologist, you might want to go. I don't want to freak you out or anything, but there's a very strong association with vascular and cardiac problems. I had an echocardiogram and it picked up multiple valve issues and regurgitation.
Omg. I do that, too! The whole "just a sec!" *pop* "I'm good now!" thing. I can't sit with my legs crossed on the ground without my knees rolling out, so it was pretty much every lunch at school and every assembly, when everyone was getting up to walk off I was like "nooo wait for me."
My hip popped out while I was being spooned once. I was internally scream-crying, and he noticed I was panting and I was like "hey could you stay really still for a sec?". Yeah. Not weird at all :/
One of my shoulders is really hard to get back in, and it likes to go for a full dislocation every now and then just to keep me on my toes. I still put it back in myself, because getting in the car to go to the hospital without drugs sounds like the worst thing ever. You know when something is hanging there, and you can feel a slight breeze on it and even that is enough to make you want to die?
It's nice to talk to another weird joint person. Most people just want to see me do party tricks with it.
Re: What injuries have you had?
Which... is both a good and bad thing, because there IS an EDS specialist at UW... but he is only interested in cases with cardiac involvement. He won't see EDS-H patients. Period. There's a... I'm not sure what you call a specialist resident, but basically that, who has expressed interested in EDS-H patients, but she isn't able to take patients of her own yet.
On the other hand, medical researchers have been arguing whether HMS is actual EDS-H, so if there's a decision made, I get "grandfathered" in.
OMG. The hips. Wanna know how I found out my hips sublux and pop back in place? Girl on top sex. My ex-married partner went O______O because this happened, um, while their dick was in me. They felt the reverberation. That was... um. Yeah. For awhile, the only way I could actually GET my hips to pop was straddling them. This led to a lot of, "Hold still" while they were on the couch, and I'd sit on their lap, and pop my hips. They were very patient, but, they also have joint fuckery issues.
Said ex also has issues with the shoulders. For some reason, that's the one joint that I can't pop on pretty much command. They'll sometimes pop, but it's rare. Add to this, I have rheumatoid arthritis, so, I am dealing with the issues of the weird joints plus the fact that they're stiffening from the RA, and not in good ways. Sigh.
And yes, I am very, very, very well acquainted with that feeling. It is usually my back or my hips that I get that in. As far as party tricks, the RA has limited a lot of that, and the hypermobility is most noticeable in my hands. The doc who scripted me my MMJ card looked at how I could bend my fingers and hands and was like, "How the hell have you not been diagnosed with hypermobility syndrome yet?" (Because my rheumy is a fucking idiot who seems to think that getting EDS diagnosed only matters if you're intending to have kids. Fucker. Unfortunately, he's the only one in town.) I can do a lot of the stuff that you're only supposed to be able to with advanced yoga, though, and that usually makes people go "... the hell?" esp when I mention I've never really done it.
Re: What injuries have you had?
I'm glad your cardio stuff was clear. I just thought I'd mention it because I've been having heart issues for a long time but until this year every doctor I've had has told me I'd grow out of getting arrhythmia and chest pain, or it was my asthma. Fuckers.
Goddamn it is hard to get people to take an interest in EDS. From the reading I've done, every form of it still needs to monitored because the classifications are very new and there isn't a "benign" form of it that is guaranteed to be free of complications. Having vascular symptoms does put me at a higher risk of spontaneous arterial rupture and other shit I don't want to think about. La la la not happening.
I used to do ballet and gymnastics when I was younger, so I usually just say it's left over from that. Being more muscular did actually stop a lot of the random subluxations, I guess because there was more stringy bits to hold all my joints in place? So weird.
I don't really have sex, but it sounds even more awkward with hypermobility. I never really had issues with my hips when I was riding horses, but I guess it's the muscle thing again. You have to stay tensed to stay on, and my hips usually go when I'm relaxed or sometimes if I kick my leg out in front of me when I walk.
It's never just one thing, is it? Health issues are like ants. There's never just one.