sleeping-reverie

[sleeping-reverie]

Most disappointing part of getting imagining done is when they don't include the pics in the portal. Cmon, you're telling me I had to sit in a freezing cold metal tube for 3 hours for these pics and I don't get to see them!? I wanna see what my heart looks like goddammit, the only fun part of this is getting to see what my insides look like and pretending I know what it means!

[sleeping-reverie]

Man I wish more was known about my specific gene and how it impacts EDS.

Everything I hear from everyone is different. It's it's own thing, it's classical, it's vascular, it's classical with more cardiovascular issues, it's classical AND vascular AND neither at the same time. Less than 1% of people with c or vEDS have my gene. And we don't know anything about what it does.

Idk. It's really hard sometimes. My current diagnosis is vEDS? (Emphasis on the ?) but that seems to change every time I talk to someone.

"Your gene is under vEDS in our hospital system so that's what it is."

"You have no history of aneurisms but aren't hypermobile enough for hEDS so we'll just say it's classical"

"We don't know anything about people like you, so we don't know what to expect."

I've read that people with my type tend to have arterial/aortic dissections and that's what it's known for. I got an MRA the other day and am waiting for my doctor to tell me how to interpret it but idk what to even hope for anymore. Feels like no matter what no one knows what to do for me.

Idk it's just so isolating yk?

[sleeping-reverie]

I think mines Acrylic, I found a really pretty one online a few years ago and I've been using it ever since. Not adjustable

curious

[sleeping-reverie]

Restless Leg Syndrome is such a fucking weird disorder to have

Like yes, sometimes for no real reason I get the uncontrollable urge to move my body (no it's not just legs), and it's actually so debilitating I can't sleep at all let alone do things that require me to sit/lay still for extended periods of time

And no one knows why it just does that, but I am prescribed iron supplements for it

[sleeping-reverie]

I spend most my time yearning for someone to talk to, most my energy trying to reach out, and then end up alone anyways because the second I get close my illness flares and Im made completely useless again for god knows how long