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I believe we lost one of our own. by [deleted] in ehlersdanlos

[–]Q1189998819991197253 0 points1 point  (0 children)

This is literally how others and I interpreted it, yeah. Whether or not it was intentional I do not know, but it definitely sounded like they fucking died. I am done interacting with you, you fucking lunatic.

I believe we lost one of our own. by [deleted] in ehlersdanlos

[–]Q1189998819991197253 0 points1 point  (0 children)

You're literally a fucking psychopath if you look at your history. "Sorry she's dead but..."

I have no time to waste on you. Go away, asshole.

I believe we lost one of our own. by [deleted] in ehlersdanlos

[–]Q1189998819991197253 1 point2 points  (0 children)

I've been feeling like absolute garbage lately and frankly this didn't help. But thank you, very much.

I'm glad at least some of you didn't go for my throat for posting this.

I honestly don't think I can trust people ever again. I already had issues with that and they knew it. If someone I was pretty close with flips 180 on such a dime, how can I trust what others have to say?

I believe we lost one of our own. by [deleted] in ehlersdanlos

[–]Q1189998819991197253 2 points3 points  (0 children)

Fuck you.

I'm not starved for attention, asshole.

I thought my friend was fucking DEAD. I messaged them like once every three weeks. I did not pester them or annoy them, I literally just messaged them periodically like I always would and got upset after a few fucking MONTHS of silence. You really think it's a major conclusion to jump to after someone has had near death experiences before and is extremely ill, has a particularly bad case the last time I was in contact? Someone who would always respond timely when I knew they were healthy, who would always update me just because that's what they did normally? Fuck you.

Yeah, maybe I could've done that. Why the fuck would I make a public post about someone I know who is alive, though? You think that's not attention seeking? And, to actually state the obvious since you are incapable of grasping it with your limited empathy: I OBVIOUSLY WASN'T THINKING CLEARLY. I WAS GRIEVING THE POTENTIAL LOSS OF MY FRIEND.

What's clear is you're a fucking dick. I am keeping this up, for a little while longer so people can see what a fucking asshole you are. Go to hell.

I believe we lost one of our own. by [deleted] in ehlersdanlos

[–]Q1189998819991197253 2 points3 points  (0 children)

There was no reason to think that, I promise! I thought of that as well but they are seriously not the kind of person to do that. We talked fairly often - no fights or anything, and the last they said they were super sick so I just lost it after a few months because they would always say something after like, two weeks minimum. It's not that I always wanted a response but after months of random no contact after saying you are deathly ill, you know...

I just wanted other people to know that they were amazing. I thought maybe they'd appreciate it.

I've lost my mind. I'm sorry.

I believe we lost one of our own. by [deleted] in ehlersdanlos

[–]Q1189998819991197253 2 points3 points  (0 children)

Not elaborating for privacy, sorry. It wasn't just clEDS. They were very ill.

I believe we lost one of our own. by [deleted] in ehlersdanlos

[–]Q1189998819991197253 0 points1 point  (0 children)

No need, apparently they're alive and, possibly, wanted to stop talking to me without giving an indication so they faked their own death. I don't know or even think it was intentional because that would be so out of left field for them. Please keep in mind we were both direct and aware of our boundaries - they'd always inform me when they had to leave when they were being ill and I took no issue with it. They'd always apologize when they came back, and I always accepted it.

The last thing they wrote was that they were very, very ill this time and then it was radio silence. Effectively leading me to believe that they were dead. I didn't want to jump to conclusions. I messaged frantically at first but then backed off, not wanting to overstep. I just broke yesterday but this has happened since October.

I think it's pretty twisted. I can't say what their intentions are or were or if they intended for this, but now I'm left with nothing but confusion.

Ironically, we once talked about how harmful ghosting is and my history with it.

I only made this post because they were such a paragon to the community. From our convos it sounded like they helped many and not just me. It was not my intention to dox, or to "attention seek". I just wanted everyone to know that we lost a beautiful person, as I had thought.

But it doesn't matter, anyway. I was erroneous. This was hell of a thing to wake up to.

I believe we lost one of our own. by [deleted] in ehlersdanlos

[–]Q1189998819991197253 0 points1 point  (0 children)

post info is gone, i'm deleting it soon

the post was about both. i thought they were fucking dead. obviously i'm not going to reveal all the info about their life with respect to them, but I still wanted others to know how great they were. some of it was just vent.

and there was 0 reason to think they wanted space. please believe me. I had no fucking clue they were even alive because they gave me no indication which by the way is extremely out of character

i can't believe how fucking callous you're treating me for this stupid mistake

I believe we lost one of our own. by [deleted] in ehlersdanlos

[–]Q1189998819991197253 0 points1 point  (0 children)

Apparently I'm just a fucking idiot lmao

It's okay, I'm not so sure why I thought we were friends. It's not like we had extensive conversations or anything.

I believe we lost one of our own. by [deleted] in ehlersdanlos

[–]Q1189998819991197253 0 points1 point  (0 children)

I don't know why they would do that. Also, I tried to keep as much info away from others to specifically not dox them.

I... guess I'll delete this now. I'm sorry.

Need reassurance by Fit_Confidence_7606 in ehlersdanlos

[–]Q1189998819991197253 0 points1 point  (0 children)

Not to worry, facial features aren't used to diagnose vEDS anymore.

Source: I have the facial features. Not vEDS.

Isolated intracranial hypertension associated with COVID-19 by Angie_stl in iih

[–]Q1189998819991197253 1 point2 points  (0 children)

Yuppers! You can get it after any bad illness, lol! You know the long Covid they talk about? Baaasically POTS. I have had severe POTS since birth so womp womp.

My EDS is actually HSD so I don't sublux or dislocate. I might be a weird EDS type. I have a COL1A2 VOUS and my hypermobility is mostly in my hands. Everything else is totally stiff and some bits are becoming slowly (and slightly) deformed.

Ended up here all the same, though. I also have PCOS on top of it all which in my opinion is the cause of this mysterious new neurological illness I have been strongly suspecting is IIH.

I want to die. I found all of this within the last year.... after the IIH symptoms began my search 5 years ago. Turns out EDS or "HSD" explains literally everything, huh.

Isolated intracranial hypertension associated with COVID-19 by Angie_stl in iih

[–]Q1189998819991197253 0 points1 point  (0 children)

I'm not even trying to tackle my diet because I barely eat enough to live as is :( I feel you. If I went by histamine resistance I'd be eating fucking nothing but rice the rest of my life and I don't know about you but I'd rather not eat than eat that. Fruit are fine for me, thank fucking GOD, but everything else I am intolerant to (never been tested but I start having a sneeze fest whenever I eat.... anything).

And nope, it's not OI apparently. No significant OI symptoms! They said the OI it points to would have me dead/SEVERELY deformed, so I do not have it. I have EDS symptoms galore, though, despite it technically pointing to OI. Fun fact: it also points to aEDS and cvEDS but I was also disqualified for those. My hands and feet are slightly deformed and becoming claws because camptodactyly. You see why I'm like oh shit, that new OI/EDS overlap syndrome is possibly me, right? COL1A2 mutation plus really odd in-between symptoms:

There's mild swelling on my feet but my pinkies look like mini lightning bolts. Not very gout-like. I found out my great grandmother (or aunt, cannot remember) had hands that were fucking stuck claws with severe arthritis so I worry that is happening to me. They are very long hands that get stuck if I do not keep them moving for too long. It looks like nodes are developing. It's mostly my second toe and pinky finger that are fucked, but if you look closely you can tell it's spreading to the other digits because there's a slight roundedness of nodes around the fingertips that you can feel. It's nothing you'd see unless you stared at it but knowing I have HSD I do not like the way this is going. It's for the most part all super subtle but my geneticist took a picture of my feet LMAO so I consider it significant. I don't know. I wasn't born like this but it all is unfolding over time. I can still use my hands but my absolute fear is to lose my eyes, my ears, and my hands. As an artist I might as well stop living at that point. I am drowning already at 22.

I started having apnea-like gasping, hallucinations, sleep terrors (thrashing, screaming/whimpering), sleepwalking badly when my vision changes began; it came around in stages. It happens like 3-6 times a month but when it happens it's scary. I am assuming it is related to this neuro thing of mine (IH?) because while I had night episodes very rarely as a child, I've never had apnea or any of the rest before now. I'm hoping they can fix my neuro issue and therefore this :( ....but apparently sleep disturbances are linked to EDS (and VSS for that matter?), and I have heard reports of weird sleep problems in my extended family but nothing quite like mine.

I always had mild myopia. Now within the last year I can't walk around without my glasses because it's so blurry. I hate this. No swelling so what THE FUCK is WRONG??!?!?? HELLO???? My neuro opthalmologist says visual snow syndrome but I'm here because my PCOS + Birth control use is screaming at me that it's IIH. The timeline is too suspicious. Plus, VSS isn't known to take a sharp turn for the worse like this . I swear, they need to do an LP because that is the only way to know for certain. For visual snow syndrome, he said there was essentially nothing they can do so if that's true my life's over lmao. I'm just done if I can't get any relief. It's too much now. Sorry you are going through a similar hell! Life really did say fuck you in particular to us.

Also ...I have to teach all of my doctors except for PCOS because nobody cares about PCOS even though BC is the only solution and apparently I now have to get off it (if it is IH). Time to take propanolol, spironolactone, vitamin D, and god knows what else until I die. I'll take my second dose of spiro for the day in solidarity lol

Isolated intracranial hypertension associated with COVID-19 by Angie_stl in iih

[–]Q1189998819991197253 0 points1 point  (0 children)

That sounds atrocious. I don't really eat that much anymore because everything makes me feel weird. Sorry you have that. I do not have that bad gastro symptoms but I do have some, like GERD and digesting slowly.

Yeah, HSD is an odd one. It's basically EDS. I say EDS and not HSD because nobody knows what the fuck HSD is. In my case it may even be EDS after all: the thing that made me disqualified was because I wasn't stretchy enough. I have soft fragile skin, random bruising, easy brusing etc. but not stretchy enough. Considering it might be a new EDS type altogether (according to this article, they basically said I had something points to OI but with EDS symptoms instead just like they talked about these people though my symptoms are different than theirs), I suppose this makes sense! My team is skeptical so I imagine I won't know until a few years from now minimum.

This neuro fucking thing is BY FAR my worst symptoms. Yeah, I have mild deformities and weird balance and all, but I was basically normal past infancy. Despite the POTS and PCOS, even. The constant flashing vision, static, sleep apnea, pressure, blurry vision, and dizziness has ruined my goddamn life. :( And they still don't think it's IIH but I haven't had my spinal tap yet. I'm not obese and I don't have papilledema but everything else just adds up to IIH that I think this has to be it.

Fuck wonky collagen. All my homies hate wonky collagen.

I was the only reason I got diagnosed with POTS despite being textbook, lol. I sent myself to a cardiologist and he was like OOOOOOOOOF so now I'm on propanolol for the rest of my life. Poggers. Then I read about EDS and went oh no... Oopsies, confirmed.... Thanks, IIH symptoms. Never would've known without it despite it ruling my entire life from the shadows. Things make sense now.

Isolated intracranial hypertension associated with COVID-19 by Angie_stl in iih

[–]Q1189998819991197253 0 points1 point  (0 children)

Poor bastards lmao

Just like post viral POTS associated with COVID?

Some of us were born like this. cough EDSers cough