funnylittlelad

[funnylittlelad]

Anyone else having that weird in-your-young-adult-but-chronically-ill-years experience where you're doing all this 'old people' shit, like, going to bed at like, 8:30, and having sleep apnea and needing to wear a CPAP for it, and complaining about your bones when you move, and planning in-person get-togethers at least a month in advance, and not ever sleeping very well? And then you feel like you don't do anything really fun or have 'life updates' because you're just so tired, all the time?

[funnylittlelad]

The difficulty of chronic illness...

Sometimes I think the hardest thing about being a spoonie��isn’t the confusion or fear of the unknown; I think it’s the certainty.

That day (whether six months after diagnosis or six years) when you wake up and truly realize that this is *never* going away. That heartbreaking certainty is more then I can handle some days.

How do I live another 40-60 years like this? Somedays it’s all I can do to get out of the house because it feels like a pointless exercise; why bother when it can all fall apart next week. A good friend of mine with Crohn’s said that she became much happier when she stopped waiting for the other shoe to drop. But sometimes the spectre of that shoe is all I can see or think about.

[funnylittlelad]

my honest to god reaction to hearing about the UnitedHealthcare CEO being murdered was to bust out laughing so hard I almost puked

[funnylittlelad]

hello friends i've made the jump to BlueSky (@/chroniccryptid.bsky.social) where i will be more active (not writing wise just in general). feel free to follow me there if you're interested in seeing me squawk about nothing! i plan to become more active here too but im considering some blog changes as i do. either way, i'm finally returning to internet social spaces in a meaningful way! i've decided it's time to stop going ghost and try to be a person again! let's see if i'm successful!!

[funnylittlelad]

my pentecostal upbringing never comes out more than when i'm writing. no outlines, no character sheets, no planning. i let the spirit of the lord work through me and black out while it does what it wants. i'm just the editor. editor to the Holy Spirit. the pay is shit we're thinking of unionizing.

[funnylittlelad]

this gave me a good laugh i needed that. anyways block this person they troll anti jkr stuff just to make weird comments like this.

do not blaze anything to do with harry potter onto my dash or i will hunt you with my blade that only harms those complicit in transphobia.

[funnylittlelad]

do not blaze anything to do with harry potter onto my dash or i will hunt you with my blade that only harms those complicit in transphobia.

[funnylittlelad]

can't tell if something is wrong with my back, si joints, or hips but jesus the pain the past few days has been awful and is not getting any better. i can't go back to pt until my insurance approves me so i need to know: when do people know when to go to the doctor like... i have appointments coming up but i don't see my rheumatologist for another week and a half. i don't see my new primary (old one is ableist and overall mean) until october. i don't want to go to the hospital, however nothing is helping the pain and everything makes it worse. i wouldn't be surprised to find my pelvis is tilted, something is subluxed, or i pinched something idk all i know is it hurts and i don't want to spend hours in the er to be given an extra strength tylenol and sent home. i just wish my body could like effectively communicate with me what the problem is.

[funnylittlelad]

y'know i've had many healthcare providers react in horror when i tell them this. that rather than have a surgery i needed, my poor undereducated mother chose a non surgical option out of fear. i get treated as if i made the choice to put myself through unspeakable pain and discomfort at the age of 2-3. what they never mention to me is how this choice may have impacted my body and my health long term. to the point where, i don't even mention it to new doctors that perhaps it could be relevant to. it's been so baked into me that what i experienced wasn't disability, but a blip and a hiccup that i forget its part of my medical history. i have never been able bodied, i only convinced myself i was until i couldn't anymore. that is an incredibly humbling realization.

when you think about it, it's actually kind of wild that i was convinced i wasn't disabled my entire life. i was literally delayed in walking for years because my legs were casted and then braced up so much they were unusable. instead of mobility aids, i was provided skateboarding knee pads so i could shuffle around outside and feel included with the other kids.

HOW WAS I EVER CONVINCED BY PEOPLE THAT IM NOT DISABLED???

[funnylittlelad]

when you think about it, it's actually kind of wild that i was convinced i wasn't disabled my entire life. i was literally delayed in walking for years because my legs were casted and then braced up so much they were unusable. instead of mobility aids, i was provided skateboarding knee pads so i could shuffle around outside and feel included with the other kids.

HOW WAS I EVER CONVINCED BY PEOPLE THAT IM NOT DISABLED???

[funnylittlelad]

btw i don't care how you feel about someone. i don't care what your history is. if someone is disabled and you are going out of your way to make life with their disability harder, especially when you could just as easily not without any impact to your day, you are ableist. even people you don't like deserve basic human dignity. if you wouldn't misgender me just because you don't like me and you understand that's transphobic, why can't you understand that it's ableist to go out of your way to make my life physically harder for the same reason?

[funnylittlelad]

there's something so uniquely humiliating and vulnerable about having to appeal to other people to see your disability. it's like exposing the most raw parts of myself, parts i am still learning to live with and accept, and asking for just the simple human act of thought. it isn't ableist or weird to acknowledge someone's disability and act accordingly. it doesn't make you better to treat someone exactly the same despite their disability. it makes you ableist.

[funnylittlelad]

i swear one day i'll get back to being present and posting fics again but for some reason the disability is disabling me at the moment??? weird

[funnylittlelad]

a quick rant because i just left my pt eval utterly irritated.

cw: talks about subluxations, a (very) brief mention of sex, and just the specific kind of annoyance that comes with being disabled (or having any kind of chronic condition) in medical settings

i had a physical therapy evaluation today where i talked about how my hip subluxed last week. i didn't even get to mention that i still don't know what action made it sublux, just that at some point it did. according to the pt after 4 weeks of therapy twice a week i'll be good and only have to come back for "routine maintenance." oh and also it's wild im subluxing my hip bc do u know how hard it is to do that??? like yeah i have fucking heds dipshit! it's on four of those dumb papers in front of you take a gander!

then i asked what do i do between appointments when i sublux something (bc it's not if, I sublux things like every other day at this point). i got essentially no answer. just told how we're going to really focus on strength training and to avoid positions or things that cause subluxations. do you know what causes subluxations? fucking everything! I walk down the stairs and sublux my knee and ankle. I type on my computer and sublux my wrist or fingers. I have sex and i sublux my hips. But, sure, i'll just avoid all those things for the next 4 weeks at least.

also if i get told not to throw a baseball as an example of an activity to avoid one more fucking time... do i seem like i'm playing a lot of sports right now????

[funnylittlelad]

Fun game for Pride Month:

When you're at a event, count how many people with mobility aids there are. If it seens low, think about why that might be. Count how many disabled bathrooms. Count how many unavoidable steps. Try and find one accessibility issue at the event and afterwards contact the organisers to ask them to fix it.

Many disabled queer people are left out of the Pride moth celebrations due to accessibility issues, so if you're able to be there, you're already in a position to make it better.

Don't forget your disabled siblings this Pride!

[funnylittlelad]

life update, or a not-quite-so-funny story about disability, loss, and academia:

i go to school. i did well enough in community college to earn a place in all the honors classes i wanted, started a new wave of activism on my campus, and then got into what was meant to be a fancy program and transferred. now by the time i started the transfer process, i had already been going to the doctors. doctors who told me i was fine, i needed more exercise, i need to learn to just live with my body how it is, and there's nothing wrong. so, i had an idea something was up and i was worried. what if i start this whole big new thing and i end up actually being really sick? then i hear some amazing news from the program! they've had a student who had become ill and needed to take time off and were able to do so without an issue! great! well, i won't get into all the stress-inducing, symptom-worsening stuff that happened in between, but i will say this: it was utter bullshit.

there was a week last october where i buried someone incredibly important to me and a few days later received a hypermobile ehlers danlos syndrome diagnosis. A diagnosis i knew was coming by this time, but was hard all the same. i tried desperately to arrange time off. i had just started a new student organization that was, once again, trying to start a new wave of activism on campus, but i was (and still am) grieving so many things, including my own living body. when i tried to ask, beg, plead for just one semester off- just one- i was essentially told no. i asked about a medical leave, since i was told about that student who got sick and needed time. i was informed i either had to drop out entirely or go part time and risk my funding. they were nice enough to find a work around for me to stay on part time without sacrificing funding. it wasn't enough. it wasn't even a good idea.

i needed time to not be a student, student leader, or activist. i needed time to grieve and stop putting my health to the side and build back as much as i could. i was terrified because of how things were worded that if i left now they would make it harder for me to come back. so, i decided to tough it out.

here's the thing about disability: it can't be toughed out.

i didn't have the capacity to deal with it all and so many things were neglected by me because of it. my grades have suffered and so have i. now, i spent a year of school that did almost nothing for me as a student but instead stressed me out to the point of barely being able to function because of how bad my physical symptoms have gotten.

i'm dropping out for now. i have like a year left and i can't make it through as i am. my mobility has declined so much and i've lost a notable amount of weight. i can't be in school and focus on getting the medical care i need. it feels like i wasted so much fucking time when all i needed was a break to deal. and now i can't stop thinking about the student i heard about who got so sick and the school was able to help and provide a break for and i realized the difference. they had something they could make better. they had something they saw a horizon on. i don't. they don't trust i wont need more breaks so they refused to give me even the one.

oh, and after not giving me the time off i begged for, causing my grades to suffer, they now want half my funding for the last semester back.

at least im leaving that campus with better access to gender neutral bathrooms? i don't know im just trying really hard to find a bright side.

[funnylittlelad]

today, i am 26. tomorrow, i am 26 plus one day. time is amazing.