Okay So Im Heading Back To School After Spring Break And My Trip Was AMAZING Like Seriously I Loved It

Okay so I’m heading back to school after spring break and my trip was AMAZING like seriously I loved it but wow I’m in so much pain now from everything we did. I had rest time and most days were laid back but damn even still. I made the mistake of bringing neither my crutches nor my braces with me because I thought they’d be a nuisance rather than helpful but I have definitely come to realize that any potential level of nuisance-ery is far less than the helpfullness of them. I hopefully won’t make that mistake again.

On another note screw the stairs you have to take up to a plane sometimes. Those are so wobbly and steep and long. And oh my my knees wanted to CRY.

I finally got my custom knee braces!!!! I’m so fucking happy I just wish it didn’t take this long to get it authorized. I’m so lucky too that my insurance covered them because otherwise they’d be ridiculously expensive. They were 3D printed to match my legs so they fit so perfectly. Getting used to them is hard because they make my leg muscles have to actually work rather than just going along for the ride and my joints don’t hurt as fast during the day. Walking is so much better now. I’m so fucking happy omg. I’m so thankful to my sports medicine doctor who wrote the letter that was hugely responsible for getting my insurance to approve them.

Now I need custom fit braces because of the significant size discrepancy between my thighs and my calves. Every pre fabricated brace I have tried or wanted to try didn’t fit me in so many ways. Either they didn’t go big enough to fit my thighs or they fit my thighs but were too big for my calves or they wouldn’t sit right on my knees or so much else. But I finally have amazing braces that fit perfectly and actually stay on my legs and for that I am so thankful.

These braces have made such a big difference in how active I’m able to be and how I’m able to do physical therapy. With these braces I can actually get my knees and legs closer to where they need to be without the same kind of pain and instability that I have without them.

Now I’m working on getting a disabled parking placard because while walking is easier it’s still hard because of my joints and fatigue and also because of my POTS and just everything else that’s wrong in my body. So I have an appointment with my gp to work on the paperwork and then I’ll go from there to apply. I’m so happy that I’m finally able to get even just some of the help I need and for that I am so grateful.

I just want to not be in pain.

I just want have parts of my body not be numb.

I just want to be able to go up a flight of stairs without feeling like I’m dying.

I just want to be able to go on a walk and actually enjoy it rather than have to think about how close the next bench is.

I just want to not have so many gi issues.

I just want to not be sick all the time.

I just want to be able to go through a day and not be absolutely exhausted by the end of it.

I just want to be able to live and not have to worry about whether I’ll be able to do what I can do today tomorrow.

I just want to have a body that works right.

I fucking love my knee braces and crutches. They make my life so much easier and I’m so lucky to have them. I went on a hike today (mostly flat but with stuff like fallen trees and tree roots and grasses making it bumpy and stuff) and I could actually do it! I walked for an hour for over a mile and I’m so fucking proud of myself! I know that because it was flat some people might not consider it a hike but I do and I’m proud.

Happy disability pride month!

[image description: a tweet by user @indigenousAI saying

“fun fact: as a DV survivor i cannot register to vote because doing so makes my address public. anyone who is fleeing or hiding from an abuser is automatically disenfranchised from the political process and this is a feature, not a bug”]

I think that it's really important for people to realize that being disabled is traumatic. genuinely. your body and brain feel like they are breaking down and wrong. you are in constant heavy stress from stuff like chronic pain. most disabled people i know have a somewhat regular emotional break down from the trauma of it all. and we are expected to just smile through it by society, to not be in the way, to not be an issue.