#azzyrambles

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Being psychotic is constantly checking things to make sure you’re in this reality and you didn’t accidentally stumble into the neighboring reality where everything doesn’t make any sense again

[azriel-black]

“Oh POTS isn’t that bad is it?”

Here’s a list of things that I have to deal with due to my POTS:

-I can’t drink regular water or I will get dehydrated because without sodium, it doesn’t stay in my body long enough to do anything.

-I can’t stand up without getting tunnel vision and my fingers and face going tingly

-I can’t stand up without hearing my heart rate skyrocket from the pounding in my ears

-I am very nauseous and dizzy constantly

-sometimes at night my POTS symptoms flare for no reason so I wake up with an extremely high heart rate, sweating, and dizzy

-also at night, if I’m having a flare, I cannot change positions in bed without feeling my heart pounding in my chest, even if the change is just rolling over in bed.

-standing at work or in lines for long periods of time feels like hell, it feels like my limbs get too heavy to hold, and I get lightheaded and dizzy after a while.

These are things I deal with that are POTS related specifically and not even a majority of my symptoms or the most debilitating of them either, I don’t have a severe case of POTS by any means either, things could be much much worse, so yes POTS is “that bad”

[azriel-black]

Why are people on the internet so upset about having different needs than other people?? Like yeah a wheelchair users accommodations are going to need to be different than someone with LSN autism for example. That doesn’t mean that the wheelchair user is “more disabled” or “deserving of the support more” it just mean that the accommodations they receive are not the same as yours, because while a ramp into the building might help the wheelchair user, what the LSN autistic person might need is lower lighting for example (or sunglasses if that can’t be done). They are BOTH being accommodated just DIFFERENTLY.

Idk if I explained myself well in this post I just woke up and have a terrible cold

[azriel-black]

Well I’m unofficially officially diagnosed with hEDS (aka i qualify for the diagnosis but my doctor has to run the genetic tests to confirm it’s not another type)

I’ve suspected it for 3 years. Basically treated myself as if I have it for 3 years. So nothing is really groundbreaking about this to me, all this means is I might be able to get back into PT and maybe get mobility aids covered by insurance instead of paying out of pocket for them.

I’m happy to finally have an answer to my pain, an explanation as to why I’m in pain all of the time.

[azriel-black]

“Self diagnosing isn’t valid ever!”

Shut up and just say you’ve never experienced neglect, or abuse, or poverty, or medical gaslighting, or racism, or sexism, or any other kind of barrier that exists between someone and a diagnosis.

You had the ability to get a diagnosis, that’s a privilege a lot of people don’t have, and that’s okay. You don’t need to put other people down just because you can’t understand why they’d do that.

Most people who are self diagnosing spend months to years researching a probable diagnosis before ever claiming to have it.

And another thing, I’ve self diagnosed everything I’ve had, and then as the ability comes, I get it professionally diagnosed, and I have been diagnosed with almost everything I’ve self diagnosed with, it’s just funds, waitlists , and medical team issues that are preventing me from getting an autism diagnosis.

Hell even my hEDS which I never really fully self diagnosed but suspected for sure, was true, I do have some type of EDS, I’m just waiting for genetic testing to come back.

[azriel-black]

Woah I’m still alive ! Surprise everyone! (it’s not a surprise if you follow me outside of tumblr, I just forget this blog exists lol)

She’s a long one so I’m putting a cut right here

Anyways, life’s been something alright. My job is going okay, I’ve had to call out a few times due to stomach issues. My boss sucks at his job and blames it on everyone else so that’s been making going into work hard because I get very frustrated and angry with him. My pain has been alright also, I start a higher dose of my nerve pain meds soon, just waiting for my lower dose to run out. And I started taking my antipsychotic twice a day. It helps a lot with my anxiety and paranoia I get in the mornings right when I wake up(it would get so bad id throw up every morning from anxiety) I’m going on a cruise with my family soon (we planned this like a year ago for my grandma’s last trip to the ocean) and I’m nervous because it’s with my family for a whole week, and I don’t see them for more than a couple hours at a time anymore so that’s gonna be really hard because of the things they’ve done to me before, I’m scared bad things will happen again. I can bring my cane but not my crutches or rollator because my family doesn’t know I use those aids yet. Hopefully it’s enough for a whole week (They don’t believe how bad my health issues are) I got TD snap on my IPad and have been practicing using AAC a lot more recently and I’m starting to get faster.

I’ve been struggling with eating again and I thought I had recovered like all the way, but apparently not. It’s hard to get myself to eat before about 5pm and even then I feel like I need to eat very little or I’m “bad”. My hallucinations are also showing up more at night, even with the increase in antipsychotics so im not really sure what’s up with that. My body is starting to feel heavier, like it does every October-February for me, I’m just worried because right now I don’t really have a choice in working it’s work or go homeless, I don’t have family that would let me stay with them. I don’t have friends I could stay with. I am at a point right now where I have to push through all these symptoms and work, and that’s how I got this bad in the first place so I’m really scared to say the least.

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Their eyes fall first to my hands, holding my crutches, then to my legs, trying to figure out if what is wrong with me, could happen to them. Their eyes never meet mine, they decide right before looking me in the eyes that they can move on, that what is wrong with me could NEVER happen to them, how they’re so healthy. How they’re not broken.

I want to tell them it can, I want to tell them this can happen to anyone, you could wake up tomorrow and be disabled.

I want to stop being a zoo animal. I want to stop being a circus freak for people to stare down. I want people so *see* me, not just look at me like a disgusting creature that doesn’t belong in society.

I want to be a human being to people again. Is that so much to ask for?

[azriel-black]

I am so sick and fucking tired of hearing “that’s just how it is” in response to a disabled person asking for someone to not do something that is harmful to them, or when asking for accommodations. It makes me so fucking angry. what kind of bad excuse for not including a flash warning, for example, is “oh well if you have light sensitivities then you should just not be on social media” (a real comment I’ve seen many times on people’s posts.)

What do you mean you couldn’t take the three seconds to add a flash warning to a video, therefore making it much safer for many people. Therefore making the audience that can view your content that much bigger.

Why wouldn’t you want captions on your videos? It makes it accessible for people who need captions on spoken content AND it makes the amount of people that CAN watch your video much much higher, you have a better chance of getting more views

I don’t think things should only be done when there is a benefit to able people, I think that even if only one person would benefit from an accommodation then it should be provided and it should be protected. But it also helps people be more willing to start accommodating people when it also benefits them.