ThisIsJordanKay

a man in a black jacket and khaki pants is standing in a dirt field ALT: a man in a black jacket and khaki pants is standing in a dirt field

Ozzy 😭💔

a crowd of people with their hands on their heads ALT: a crowd of people with their hands on their heads

It should not be a hard concept for people to wrap their minds around. But I’ve seen other people in the community become unglued before and tell I don’t count as a disabled person because I don’t have the same everyday problems as them. They’ve also gotten mad at me for things I can even do.

a stop sign is hanging from a pole with a blue sky in the background ALT: a stop sign is hanging from a pole with a blue sky in the background

So over the idea I don’t count as a disabled person because I don’t have chronic pain. My body is unusual because I have a rare disease + a high threshold to pain. But no CHRONIC pain. Of any kind. At all. Ever. That’s just the way my body is. But I’m still disabled in other ways 🙄

Me to them:

Right. I so did not mean to fall of the face of earth. Whoops 😅

Writing an AU X-Files story, and I keep laughing because there’s TWO Williams, a Margaret, AND a Charles in one family lmfaO where does your brain go?

+ there is a Diana. But she isn’t related to them 😆

I’m at a loss for words about Michelle Tratchenberg. Was just talking about her, for days ago. Harriet The Spy changed my life in more ways than I can say.

We are a small business based out of Virginia. We make STEAM themed clothing and are size inclusive. Our dresses are perfect for busy professional women and kids who love Science! Our dresses have pockets!! #dresswithoockets #svahausa

🌺🌿🚊🌸🌾🌙
#pixelart

Right back at you

Fire departments showing up is socialism. The police showing up is socialism. The National Guard showing up is socialism.

We take care of our own.

If you don’t want that.

Fucking leave.

I still also think about 1) other #disabled people who have literally scolded me for not keeping an epilepsy log (sorry that my episodes are too infrequent for that??), and 2) those same people who have gotten mad at me that my rare disease isn’t EDS even though it sounds similar 😅

I still think about some #disabled people I’ve encountered over the years who try to say I don’t count as disabled because I don’t have chronic pain or chronic fatigue. There’s a litany of other things I have. But neither of those things are them. Disability isn’t only about pain or fatigue.

These two illustrations were meant to be together.

#myart #thexfiles #msr #danascully #foxmulder #txf

“I think it’s remotely plausible that someone might think you’re hot”

cue me rubbing my hands together like a supervillain #thexfiles

📌 #Disabled
📌 Comically Rare
📌 Autistic
📌 Rare #Disease zebra
📌 #RareDisease advocate
📌 #AO3 author
📌 Multi-fandom writer
📌 X-Files fan
📌 Re-emerging fangirl
📌 Name enthusiast
📌 Language learner
📌 Movie enthusiast
📌 Disney fan
📌 Fact researcher

I hope we can be friends ☺️

#PromoSky

Not only the worst of America, but the worst of humanity because she has none. Absolutely disgusting.

I’m brand-new to BlueSky. But not to #AO3. Will be posting my chapters here when I’m done with them. Please ❤️ this if you write and/or post about The X-Files, Star Trek (any era — but I write for TNG), or Criminal Minds. I want some people to follow so I can make my feed interesting 😅

I’ve never consumed any manga or anime content but with hanahaki disease (I don’t think). But I’ll be damned if it hasn’t given me an idea for an X-Files story…

YouTube video by Marshall Nelson Dead Tom's Dead!

I’ll never get other #disabled people who act like just because they’ve never heard of my EXCEEDINGLY RARE overgrowth syndrome, that means it can’t be real. I promise you that it’s just as real as any other common or rare dx.

In the meantime, this comes to mind…

youtu.be/luL04dSHl54?...

Well, if this is not my life…

Next month is the annual #raredisease conference. As ever, I’ll be the only one with my syndrome. But I guess that comes with the territory of having a comically rare genetic #disability 😅

listen, you don't have to listen to random Internet strangers telling you to give up community and familial ties and your income when they'll do nothing to support you in replacing them. deleting Meta apps isn't easy for everyone