Flare ups happen and when they do its okay to slow down and it's okay to take a break
Rest is productive
Taking care of your body is an act of self love
Asking for help is okay and you should do it because your loved ones wanna be here for you
You are not a burden for your flare-ups, and your flare-up is a burden on you, not everyone else
Pretty pretty please, with parmesan on top!
#Thinking about Eddie being put first by his two favorite people...
my favorite celebrity non-controversy was when lorde wanted to express her love of baths so she posted a picture of her bathtub captioned “and iiiiiiiiiii will always love youuuuu” not realizing that whitney houston died in a bathtub
Disabled people shouldn't have to be perfectly nice or kind when we ask for accommodations and inclusion. We shouldn't HAVE to ask.
Furthermore, we usually ARE being nice when we ask; ableds just take any request that they do the bare minimum for us as if it's a great slight to their honor.
☀*🌈:・゚✧ all together🌈 *:・゚✧🌟
No because this is so me.
And like I'm a student in psychology so it's always so fun ahahah
Every time I try to read up on osdd/did, I get sleepy 💀
I'm imagining the system sounding a warning bell and waggling its fingers at me going "you're feeling veeeeery sleepy~ none of this is interesting at allllll~"
I don't want to ask AI a question. I don't want AI to write my sentences for me, at all ever. I don't want AI search bars to be the default and I don't want them to be in such a way that I can't opt out. I don't want this kind of AI in my life and there is no such thing as AI art, there is only theft of art from human artists by AI scrappers. I don't want any of this, I hate it. Maybe in a world that isn't driven by tech bro capitalism we can see machines doing all the dangerous inane things so humans can be free to pursue life and creativity. But that's not what's happening right now and I hate it.
I've been reblogging a fair number of disability related posts in recent (when I actually come online). I'd like to take a moment talk a bit about my condition and frustrations around it. (TW near the end: pet death)
I have fibromyalgia, diagnosed by my rheumatologist after our investigation into my Sjogren's antibodies being six times higher than normal came up with no response to medication designed for it. I'm looking to take the test for fibro to confirm it for my disability case and am aware it only can identify one type, so here's hoping I lucked into at least being able to show medical evidence if my joints being fucked up little pain factories.
I've been seeking disability insurance since 2022 and have reached a remand back to the hearing level from the appeals council. I wasn't expecting it, since the judge pretty much twisted my testimony a bunch, my lawyers abandoned me, and I couldn't manage to interact with social security to get access to my C-file due to my condition--neither being able to get through the misophonia triggering ear pierce of the 120+ minute hold music nor mustering the motivation for getting down to the physical location to wait for hours upon hours in hostile seating and overstimulating environment.
It's been 2+ years since my initial application and I've unemployed for 99% of that. That 1% being a grand total of 10 hours at a major grocery chain in what can only be considered a misguided attempt to cope with no income, which resulted in my entire body shutting down with an explosive flare.
Now, my spouse, bless her, has been able to support me through this whole process. Emotionally and physically. I have a lot of gratitude for her. Unfortunately, with rising costs, being a single income home means we've been eating into our savings. More than half of it.
A kind friend was able to get me a job building ikea grade display furniture for a different major grocery chain. It's less than 15 hours a week and at the pay rate I take about 1000 gross per month. The thing is, while it isn't as intense as the other grocery work, it still causes flare ups, including full body migraines which take me out for a day or so.
I was about to get a new lawyer to help with my remand, until they learned I got this gig. Now, I'd been told by my previous lawyers that to qualify for disability (by legal definitions in the US), you can only work part time and make less than a certain amount each month--about 1600 this year. These new lawyers enlightened me that, while true, any amount you make that nears that limit makes your case harder since the judge gives you the side eye.
So here I am, tearing up my body because we can't afford for me to not do so, and it turns out my hope to get income that doesn't require me to tear up my body is at risk because I'm desperate for income. The government really does hope chronically-ill people either die or get starved out of the application process.
The hardest part is that if I don't keep this application alive, I won't be able to apply again, because (say it with me) I've been too disabled to work enough hours to meet the work credits within the past 10 years from the jump of a new application.
But I'm tired. I'm tired every day. I'm too tired to fully engage with things that bring me joy. I'm tired of thinking about how best to convey to an uncaring system how my conditions affect the quality of my life. I'm tired of searching for the perfect combinations of chemistry that can settle my anxiety, audhd, depression, hypomania, muscle and joint pain. I'm tired of brain fog attacking my ability to engage with topics that matter to me. I'm tired of hiding my pain from my family of origin, because I don't want to listen to their ableism. I'm tired dealing with the self loathing. I'm tired of being me.
I've all about given up hope that I'll get at least this one thing to reduce the pain. And that's what the government hopes will happen. Because they'd rather spend more money in an effort to deny than it would cost to just provide the benefit. Nothing is going to change my condition, whether I get disability or not. The truth is I have chronic conditions that will haunt me for the rest of my life, barring a miracle of science.
But the government isn't concerned with the truth, the law is just an arbitrary metric that says you can't be able to lick envelopes or crouch or lift a certain poundage. It's unconcerned whether there actually exists a job that us exclusively licking envelops that has the hours and pay to amount to a living wage. It's unconcerned with how fucked up you feel after bending down or lifting once or twice. All it cares about is finding that one thing that lets them say 'sorry, thanks for playing.' Even if that thing is is twisting around your testimony.
"Well, he plays video games. Well, he has cats." They honestly will purport that disabled people can't have any modicum of joy in their life, have anything to distract from the horrors. They're looking for anything like that to the point that a judge will hear that conditioned ruined my relationship with my dogs that I had before the conditions reached full blown disability, only to turn around and say "well, he is currently raising dogs." My rescues died from cancer 6 months apart in 2017, prick! What the fuck.
I don't know how to end this rant, so I'll just close with I know there is a lot going on in the world right now and I wish I had more energy to put toward taking a stand. There are people I love who need protection and care and support, but I don't have the resources to provide those things. I can't even provide them for myself. We need reform. We need revolution.
This people, need to hear this more often. Like thank you very much you know i have autism so you're treating me kindly. But why do you have to be a prick to that other girl who does the same sh*t i do but without the label.
The label only exists because I want it to mean something. If i didn't tell you i was autistic, would you have just been a prick too to then?
Why this double standard? Like if i don't like something someone did, it's not because of that that I'm a prick to them. Yes i will dislike what the person fid and maybe even tell them but that doesn't give me the right to disrespect them. Like they're still a f*cking human being.
Being accepting of autistic people includes being accepting of "weird" or "annoying" people who you don't know are autistic, BTW. We don't just spawn into existence with a list of diagnoses tattooed on our foreheads. If you claim to be accommodating of autistic people, but then get pissed off when someone shows a symptom of autism because your default assumption is that they're just an allistic person who's annoying you for no reason, then you aren't actually all that accommodating of autistic people.
I love you irl conversations about plurality
I love you respectful curious singlets/questioning systems
I love you normalizing plurality
Just to talk and enjoy my stuff. I have two side blogs ;) Read my pinned post ! Humans are fascinating
241 posts