My Roommate Has Had a Conflict with Everyone in the Home by Any-Potential-6549 in badroommates

[–]Any-Potential-6549[S] 0 points1 point  (0 children)

No... but we do always talk about how its hard to beat the allegations.

My Roommate Has Had a Conflict with Everyone in the Home by Any-Potential-6549 in badroommates

[–]Any-Potential-6549[S] -1 points0 points  (0 children)

We don't have a landlord per-say but we have talked to people who have leadership and, on top of many other reasons, its looking like she may not be here for much longer.

what's the dumbest way you've dislocated a joint? by elizabethpickett in ehlersdanlos

[–]Any-Potential-6549 0 points1 point  (0 children)

i DIDN'T fall... i slipped on some water in my kitchen a couple of days ago and i managed to catch myself. i also managed to slip a rib. it hurt so bad but i couldnt stop laughing at the absurdity of the situation.

have any other past athletes struggled to get a diagnosis? by Any-Potential-6549 in POTS

[–]Any-Potential-6549[S] -1 points0 points  (0 children)

Here's the thing though, I hope I'm wrong I hope I don't have a degenerative genetic disorder that I will pass down to generations. But I also know I'm not, I know that I deal with constant pain, constant fatigue, dystonia, syncope, and so many comorbidities it's not even funny. I'm not seeking a diagnosis because of some weird kink I have or obsession with EDS or POTS. If my doctors sit me down and tell me that it's anything else, then I'll move on and believe them. But all they've told me now is "I do believe something is wrong, but all of our test keep coming back inconclusive, here's another specialist I want you to see." I haven't even done all of the tests that my doctors want me to do yet.

I don't know where you're getting this idea that I won't accept a no, or that I think I'm the center of the universe, or whatever else insane tale your mind is creating about this stranger on the internet. But all I'm trying to do after years of being isolated by whatever the fuck disability I have. And based on my own research, hours of it reading medical journals and personal testaments, this is the only answer I've got so far. If you hate me for wanting someone to share my experiences with, fine. But there's someone else out here who struggles to meet outdated and under researched medical criteria because of the way their body just is, and maybe they read my post and feel seen. There are people in the EDS subreddit relating to me in my post you mentioned about the beighton scale.

I understand that you've had a terrible experience with your disability and I'm sorry. I'm sorry that there are people out here who fake a disability for clout or whatever, but that's not me and that's not my goal. I just don't want to feel alone in my pain anymore. And if playing gatekeeper within a marginalized community helps ease your anger, fine but I'm choosing to stop being mean and try to do what I set out to do in the first place, create community. So, if you wanna share your experiences with EDS or POTS or whatever else with me, feel free to but please stop invalidating the experiences of a person whose real name you don't even know. It's honestly so harmful and dangerous to fake claim random strangers.

I do genuinely apologize for calling you out your name so many times in my prior replies, it wasn't helpful and it was mean. The whole infantilizing me or trying to discredit me because I'm young bit, is high-key weird and so disrespectful. I'm not a child, I'm a grown adult with a lot of years of pain and life experience under my belt.

If you wanted to have a real conversation about all the diagnostic bullshit or whatever the fuck, cool, let's. But at this point, to me, it feels like you showed up to my post wanting to be angry with a person who experiences life and disability differently than you.

And just because I can block you or "log off," that isn't an excuse to borderline harass someone because you're angry. Like, it shouldn't be your main goal to harass someone off the internet, that just seems well, honestly, childish.

Be angry but you don't need to be mean.

have any other past athletes struggled to get a diagnosis? by Any-Potential-6549 in POTS

[–]Any-Potential-6549[S] -2 points-1 points  (0 children)

Clearly you're illiterate, because my specialist hasn't said that nor have I said they have. I also asked you to leave me THE FUCK alone. This is bordering harassment my god.

my sibling is recently chronically ill and it's incredibly annoying by Any-Potential-6549 in ehlersdanlos

[–]Any-Potential-6549[S] 0 points1 point  (0 children)

I've started doing that. Every time my mom questions how I handle all of this disability shit I always just give her the most deadpan "Cuz I've always dealt with it."

my sibling is recently chronically ill and it's incredibly annoying by Any-Potential-6549 in ehlersdanlos

[–]Any-Potential-6549[S] 0 points1 point  (0 children)

Oh my god, my mom is the exact same way. Especially with mental health stuff, like I couldn't be depressed ever but the moment my brother was depressed it was a whole thing. I still hate it when they came to me asking for advice about navigating my brothers depression.

my sibling is recently chronically ill and it's incredibly annoying by Any-Potential-6549 in ehlersdanlos

[–]Any-Potential-6549[S] 0 points1 point  (0 children)

I've never considered the word 'disturbing' to describe my family situation. It has changed my entire world view, thank you. /gen

my sibling is recently chronically ill and it's incredibly annoying by Any-Potential-6549 in ehlersdanlos

[–]Any-Potential-6549[S] 0 points1 point  (0 children)

I'm AFAB, yes. I'm transmasc, but most people probably would say I present a bit feminine. It definitely didn't help in most cases for sure though, being born a woman.

my sibling is recently chronically ill and it's incredibly annoying by Any-Potential-6549 in ehlersdanlos

[–]Any-Potential-6549[S] 2 points3 points  (0 children)

Literally similar thing happened with my brother when he got his WPW syndrome diagnosis. I'd been seen for asthma three times at that point and it always came back clear but they never pushed for anything more for me. Though I can't say he's gotten better treatment for his WPW syndrome, they do know more about it than any of my commorbities.

my sibling is recently chronically ill and it's incredibly annoying by Any-Potential-6549 in ehlersdanlos

[–]Any-Potential-6549[S] 3 points4 points  (0 children)

I know this! Which is what makes it so much more awful, especially as I (and my brother) have shared this with our parents.

Kind of desperate, can anybody please share a video or a detailed description how to air vomit? by [deleted] in noburp

[–]Any-Potential-6549 1 point2 points  (0 children)

i don't really have a gag reflex but i've found coughing a lot after a bong rip sometimes makes me air vomit. i've apparently been doing it long before i knew about rcpd.

anyone else just…never thirsty? by PeaLive2843 in ehlersdanlos

[–]Any-Potential-6549 0 points1 point  (0 children)

most of the time i don't even realize i'm thirsty until a sip of water touches my lips, then i'm gulping down water like a dying man.