i went to the fair and i was rly overwhelmed by the loudness so im tired, but i got to touch a pig’s nose so it was pretty good

I often feel like disabled people are denied agency, either we are shown to be 100% relying on others or our functioning in the world just makes things harder for others. When the world capitalism created is the reason disabled people can’t live on their own, it is capitalism that decided you have to travel 90+ minutes to do any work, it is capitalism that created the warming world which triggers so many heat sensitivities, we didn’t ask for it, this is what capitalism forces us to do.

Second

I got another CPAP machine finally after almost a year of waiting!!!

I actually feel alive and even capable of creative stuff

I went out with my boyfriend today and he remarked that I didn’t seem nearly as tired as usual

I feel like its gonna take me a bit to rebuild that brain volume I lost regardless, uhhhh ofc there’s nothing I can do about the lost lifespan while insurance was attempting to socially murder me :3

I am but a squirrel scrambling up the greased pole of life trying to reach the cornucopia that will remain forever out of reach.

The disability support may not be accessible to anyone who can’t walk up winding stairs, it may be located an hours drive from school, it may he staffed by a rotating cast that switches every 2 hours, but they have collaborative knitting projects and that’s kina neat. They’ve made a fourth of a scarf.

Gettin’ chilly so I can put on sockies and get under the covers

How does this spam filter manage to filter literally just my messages from the hospital. Literally. Only. That.

Well I found out why my bladder is so out of control, it’s an actual UTI this time. I was ignoring the symptoms for days, letting it get worse, thinking it was just my usual bladder irritation.

Winter is approaching, I had a total of 5-6 ice creams this season. I hope I can have more soup in winter, like creamy soup of coconut milk… maybe skimmed milk will do since coconut milk is so expensive.

thinking about leaving my friend group because i genuinely can’t stand being around (financially) privileged people who act like that’s ordinary

I feel defeated… if oppression of everyone else is ‘obvious’ and we need to ‘shut up until [insert revolutionary sounding thing happens]’ then what’s the purpose speaking at all, living in silence seems like the only option available. Our ideology and practice will fundamentally differ from able bodied people so it might just be good to be silent because we and our intellectuals talking about our part in revolution and how you don’t have to be able-bodied to be a revolutionary might ‘stop’ their revolution. I literally have source where this argument was put forward so it’s not an interpretation, this is their word that disabled people talking about their stops revolution from happening.

I just need to rant about Christian music. My parents listen to it in the car, and it just pisses me off. These people make tons of money because they happen to be the religion our country elevates and they make music that says everything will be okay. What if it’s not fucking okay?? I’m permanently disabled. I prayed for over a decade to get rid of my mental illness until I gave up because it was only getting worse. Clearly God doesn’t fix it for everyone. “How much more must he love you and make sure you have what you need?” Really? The people starving in the streets have what they need? The schoolchildren getting bombed by the Christian US have what they need? I remember writing an angsty poem about the other disabled beggars at the temple gate that Jesus passed by to heal the one guy. And they go on and on about how Christians are being persecuted in the US… My guy, the Christofascists have (for the time being) won the US. They control it. Your teacher friend did not lose their job because they mentioned Jesus in class. In fact, a teacher lost her job because she gave a bad grade on a very poorly written Christofascist essay. Ahhhh!!! I can’t believe I used to be one of these chuds! And I fear if I wasn’t afflicted by this mental illness, I might have remained one. So I guess that’s something positive that came of it…

There’s a baby loose on campus. Its crawling around checking out all the stuff, everyone gets greeted with a loud “Da!” And if they fail to respond they get another one.

Mom is hanging back letting the baby do its thing. It is adorable.

I’ve been taking biweekly injections of a medicine for my immune system that’s supposed to help with the issue that’s made me functionally disabled. My skin acts like I have an allergy to all forms of moisture. I’m supposed to start noticing improvement six-to-eight weeks in, but I’m approaching the seven-week mark and I can’t say that it has because I consistently improve with colder weather that makes me sweat less. I’m way better than a couple months ago, but I still feel miserable the day after a shower and I’m worried.

I’ve sent out applications to get back to part-time teaching in the winter, but I’m so scared about the new medicaid work requirements. I know I’m extremely fortunate to have my parents supporting me here, but I feel like the clock is running out. I basically just spend full summers locked in a room naked and in pain, but I don’t think it’s going to be considered a disability without a concrete diagnosis. Getting appointments with specialists has been my hope for a path back to a more normal life.

Do any of you guys know how the medicaid work requirements work with jobs where you sign a contract for a salary? Like every reference I can find says the minimum is twenty hours per week, but adjunct contracts are based on credit-hours and eight credits is considered full-time so seven is the most you can get at one school.

I haven’t worked in two years now yet I constantly feel like I just want a break so badly. I am constantly cognizant of how much I’m sweating and the humidity and how being dressed for too long exacerbates those and what if I get caught out in the rain and it is just unrelentingly, excruciatingly exhausting. I’ve logged on here and read men mocked for not showering often or wearing deodorant and it’s obviously not about someone with a condition but I just want to cry because I feel like a disgusting mess unworthy of even pity. I’ve had so much false hope, so many times where the solution is just around the corner and it gets harder and harder to believe it. I still feel weird calling it a disability because maybe the injections do work and tomorrow I’m okay so later guys, but it’s not the first time I’ve gone through this and in this instant I feel hopeless.