Happening To Me... It Weird To Be Listened Too. I'm Always Expecting It To Turn Against Me. Like Where

OLIVER STARK as EVAN ‘BUCK’ BUCKLEY 9-1-1 - S08 E11 · Holy Mother of God

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.

Some women are conditioned to be fragile and weak, and to believe that it's a sin to outperform a man. Her feminism would involve allowing women to be strong.

Some women are expected to be strong at times when they can't. Her feminism would involve reassuring her that it's okay to not be strong.

Some neurodivergent people are raised to believe that they're too stupid to ever amount to anything. Their disability activism would involve reassuring them that they're capable.

Some neurodivergent people are raised to believe that they're smart and gifted, and are expected to live up to impossible standards. Their disability activism would involve allowing them to fail, make mistakes, be stupid, etc.

Some children are constantly reminded "you're the child, I'm the adult" in order to deny their autonomy. Their youth rights activism would involve treating them like an adult at times when they feel ready for it.

Some children are treated like adults in order to justify increased expectations or to downplay abuse against them. Their youth rights activism would involve allowing them to be a child.

There is no one-size-fits-all solution to oppression. Each individual person's experience is different. Whatever trauma is caused by their oppression, the activism should focus on undoing it.

This is so true.

I just did some stretches ahahah

My body: "I'm in pain."

Me: "Maybe we should exercise?"

*exercises*

My body: "Now I'm in a different kind of pain."

He's so pretty ♡-♡

Hallo little quick sketch portrait I did. Extend and you’ll see that me and my bestie drew together !

“Why should rich people pay more” because fuck ‘em

“So you are okay for paying more when you have money” I am not excluded from ‘fuck ‘em’ when relevant

For real.

abled bodied people also need to understand that, for physically disabled people resting isn't "free time" that you can use up with assigning us tasks or duties because you're busy. it's an essential part of managing disability and some of us have a hard limit that we're avoiding by having days where we do nothing.

in general when it comes to online safety and systems its best to leave what is and isnt "safe" to share up the system doing the sharing instead of trying to apply a blanket "this is ok" and "this is DANGEROUS" because plurality is wildly personal and you really cant be doing blanket statements 75% of the time

I love you irl conversations about plurality

I love you respectful curious singlets/questioning systems

I love you normalizing plurality

the neurodivergent experience:

20% of the time: wowwieee!!! i love my passions and interests!!!!! they make me so happy i want to jump up and down!!!!! weee!!!!!!! :3333333333

80% of the time: this mind is a prison