You think this torment is romantic? Well it's not.
Emylee's journey through Ehler Danlos Syndrome, Ulcerative Colitis, Eating Disorder Recovery, and a couple other suspected issues. Content Warning for all of those things.
Honestly, mostly bitching.
I was going to college to work on films as an sfx artist when I first got sick. But I could persevere and get through and it was still doable with some modifications.
When we left the city I couldn't use film as a career anymore, so I settled for something that was fun and I was good at: hair. I made new plans, built my skill set, tried my own techniques. And then I got sicker.
Now, I put on a polo shirt that sort of fits and ugly ass khaki pants and go to work behind a desk at a sales job. Which I'm good at, and can be fun, but I can't help but look at all the potential I had and I have so many regrets.
Disabled people shouldn’t have to live in fear of using wheelchairs and mobility aids part time just because abled people don’t have the basic understanding to realise that disability can fluctuate from day to day.
Let’s Have Another Bullet Point Story, Courtesy of a Friend
So I have a friend that used to be in the tumblers troupe at the renfaire as a contortionist
We were chatting online and she told me to tell you all this story.
I love Kat dearly
but she forgets that she’s stupid strong and hypermobile
so one day she throws her back out
bad enough that she needed painkillers and couldn’t stand upright
“But also I needed Tampons and like. A Burrito, real bad.”
she’s flat on her back in her apartment when she decides this
and, in an
impeccable
leap of reasoning, decides
“I can’t roll my back forward to sit/stand up like normal.
But I can ARCH my back just fine.
SO
I’m going to do that and get on my hands and feet in a stomach-in-the-air this-shit-belongs-in-a-horror-movie-type pose,
And amble on down to the 7-11”
“And get me that Burrito”
It is,
for context,
after midnight in July during a wildfire so it’s hot as satan’s own asshole and the moon is red and shit’s already generally cursed.
Imagineyou are some poor sap working nights at the world’s deadest 7-11, and you hear the door jangle but you don’t see anyone’s head over the counters.
Whatever.
Except you keep hearing noises like there’s someone in the next aisle over.
Fucking around in the burrito section
It’s also worth mentioning that Kat
1. sings whatever earworm is currently running through her head when she’s not paying attention
2. sounds EXACTLY like some kind of creepy child from a horror movie when doing so
tonight’s song is something from veggietales.
DUDE ACTUALLY STANDS HIS GROUND
and/or is really fucking high and isn’t sure if he’s tripping balls or notanyway
Kat goes up to pay for her burrito and tampons
She realizes the counter presents something of a challenge, and then demonstrates for me on her kitchen table at 4AM during a different july wildfire,
exactly
how she used the shelves to climb up the counter
like one of the boston robotics beasties
dude stares at her for like, five minutes and says.
“Register’s broke.”
“Oh No!” Says Kat.
“Just Take ‘em.”
“Really? I can leave cash-you don’t have to give me change I don’t want you to get in trouble with your manager.”
“…Nah.”
“Oh! OK! Thank you!”
“Yeah ok bye.”
Shortly after she arrived back at the apartment, she got a text on her phone from the campus security about "A Suspicious Individual” at tle 7-11.
used to be I hated my body cause I thought it looked ugly, now I hate my body cause it’s the functional equivalent of a 1998 Honda Civic with 200,000 miles, questionable brakes, temperamental AC/heating, and terrible gas mileage that’s liable to break down at any moment in the middle of the fucking road. and the seats aren’t even comfy
No offence to other specialties, but pain management doctors are my favorite.
They're not detectives, they're not looking for the cause. They're not gonna run thousands of pointless and likely painful tests. Sure, some of the treatments REALLY HURT but their only goal is to help reduce your pain.
After years of being poked and prodded with little to no reduction in pain, this PA/MD team was a breath of fresh air. I feel like they not only believe me (hallelujah) they legitimately want to help me.
The best part was they both agreed that a certain treatment was the best option, but they acknowledged that it was outside normal treatment parameters and carried risk, and encouraged me to do extensive research before agreeing to it. I've NEVER had a doctor tell me to do research. They have always just said this is what you need, do it.
Tomorrow I'm getting trigger point injections. I am so excited to take steps toward being closer to reduced pain.
when welcome to night vale said: “Sleep heavily and know that I am here with you. The past is gone, and cannot harm you anymore. And while the future is fast coming for you, it always flinches first, and settles in as the gentle present. This now, this us, we can cope with that. We can do this together you and I.”
There is nothing cooler than watching my lover play video games.
Watching him work through the puzzles and finding the patterns is just so freakin cool. And he refuses to give up, even if he's struggling with a boss and it's a game he's already beaten, he will keep working at it until he figures it out.
I think that's how he's figuring out how to deal with all the curve balls we've been thrown. Just patience and determination.
Anyway, that's all. He's just really hot and smart and gorgeous and I love watching him game.