Latest Posts by sonny-ray-of-goth - Page 2

Who the FUCK decided that insurance companies get to decide what’s medically necessary????????

So I’ve been struggling recently with whether or not things I’ve done actually happened. Like my dreams are so plain and “normal” they seem like everyday occurrences so I can’t recall if they actually happened or if I dreamed them.

Shout out to the girl in my class who loved to bring cookies and brownies and stuff to school to share with the class and when she found out I was allergic to wheat and soy she started bringing me skittles everytime she brought in baked goods so I wouldn’t be left out

Literally such a beacon of light, I love you so much

Just remembering the times I’ve actively been falling asleep in front of a doctor due to my chronic fatigue but then they still don’t do anything but tell me I need more sleep

Which isn’t unreasonable but I am a student. An AP GT student who falls asleep during class as well so I don’t get the notes or miss the lesson so I have to come in after school to get notes (or dig around the online classroom for the teachers that actually post their notes) and then have to teach myself the lesson.

Then I have to do the homework which is difficult for me to focus on (we think it’s undiagnosed adhd given other symptoms) and trying to complete the assignment takes a minimum of an hour. Give or take given exhaustion and falling asleep reading the questions, pain in my wrist, fingers, hands, etc, or having to do other things.

Then multiple by the four educational classes I’m in (thank god French doesn’t have homework)

I get as much sleep as I can

All this to say, I’m glad it’s summer and I’m glad I was finally diagnosed (maybe collegeboard will finally consider accommodating me)

This is kinda weird but I’m trying to figure out how weird my ankles actually are. I have over-pronated ankles but high arches, which apparently is strange because flat feet cause over-probated ankles and high arches cause under-pronated.

Over-pronated ankles look like ) (

Under-pronated ankles look like ( )

And normal ankles are straight | |

Please reblog if you care to so I can get a larger sample! It would be much appreciated!

[french below]

Please help me spread the word! I co-created a french speaking support server on discord for people with chronic gynecological conditions (endometriosis, adenomyosis, PCOS, chronic pelvic pain, etc)

Aidez-moi à faire passer le message! J'ai co-créé un serveur discord de soutien pour toutes les personnes atteintes de pathologies gynécologiques chroniques (endométriose, adénomyose, SOPK, douleurs pelviennes chroniques, et autres). C'est un serveur safe LGBT 🌈 et inclusif pour offrir une alternative à tous les groupes de soutien cis-centrés qui existent autour de ces thématiques. Ouvert à tous-tes, avec ou sans diagnostic ! 💗

https://disboard.org/fr/server/1110166893366628452

I'm so extremely serious when I say doctors should be put through an extremely extensive reliscensing process every 10 years. Doctors should have their knowledge scrutinized against current medical research and be de-barred at even the tiniest discrepancy. Too many old doctors absolutely refuse to stay up to date on research and dismiss patients because of their personal experiences. Too many people die every year because doctors don't take us seriously and refuse to listen to people who KNOW something is wrong. Too many people are told their problems are nothing and come back in a year or more with serious illnesses and doctors are just like "lol everyone makes mistakes" but doctors mistakes routinely cost people their lives! I'm tired of medical malpractice being swept away under the guise of "mistakes were made."

"Electrodes embedded in the brains of four people have captured a detailed and precise portrait of chronic pain."

The team found that a section of the brain just behind the forehead lighted up with a low hum of electrical activity when the study participants were feeling chronic pain. But when participants touched a hot probe, another region of the brain was active, indicating that fleeting pain from an injury operates differently from chronic pain.

“Chronic pain is actually its own separate disease that is not simply an extension of pain in general,” said study author Dr. Prasad Shirvalkar, a pain physician and neurologist at University of California San Francisco Medical Center.

The study is a step toward an objective, universal measure of pain in a patient, Shirvalkar said, to augment the current method available to doctors: asking patients to rank their discomfort on a scale.

Casually remembering when a classmate mentioned something about burning easily in the sun and I said “pale skin gang” and they paused and said “no I’m definitely paler than you” and pulled up their sleeve.

Now I didn’t mean it as a competition, I feel that’s obvious from the statement, but I plopped down my milky, semi translucent arm and stared them down.

“Holy shit, you could be a vampire”

“Pale skin gang, we all burn together”

Mind you, I can see my veins from my shoulder all the way into my hands

But the nurses can never find a vein that works

Damn you rollie veins

My foot has been hurting for the last five days and is making it agonizing to try and do my PT.

Nothing looks wrong, it’s not a joint (I think?)

It doesn’t hurt all the time but if I bend my foot up towards my ankle it hurts or point it.

This is weird

USA TODAY

Lyons Magnus adds 30+ nutrition drinks to recall over botulism threat, including Ensure, Pediasure

Weeks after recalling 53 beverages for Cronobacter sakazakii, Lyons Magnus has added 30 more products to the list due to a potential botulis

August 11, 2022

I just wanted to give everyone a heads up that 30+ brands of nutrition drinks including but not limited to Ensure, Pediasure, Glucerna, Oatly, and Premier Protein just got recalled for possible contamination with the bacteria that causes botulism, a paralytic toxin with a lethal dose of 1.3 nanograms. If you've purchased one of the affected lot numbers please return it to the store to be properly disposed of as a biohazard but do not accept any compensatory gift cards because that can be counted as a settlement if you need to file a lawsuit for any potential damages caused by this later on. If you have any questions regarding the recall there's a phone number listed in the article above that you can call, but if you believe you may have ingested toxins then please call your local poison control hotline. Stay safe

Ok so at this point I've had two people roll up to me in manual wheelchairs, well, one of them was somebody pushing somebody who was nonverbal at the time, but it still counts. They asked me why I had zip ties around my tires.

It's winter where I'm living and we have really bad snow. And the snow plow people are really bad at their jobs probably because there aren't snow plow people who clean sidewalks. As a solution I got to thinking about how I could increase the traction on my wheels. And the most redneck thing I could think of was taking a bunch of zip ties and tying them around my wheels. They last surprisingly long, and work surprisingly well. It's basically the same premise as chains for your tires during the winter.

I chose to space them out pretty evenly so there's about one for every spoke. You could probably do more or less depending on how many you want and how much traction you get but I wouldn't go more than three per spoke. I realize that it's a bit later in the winter, and I probably should have made a post about this sooner, but I came up with it about a week ago. So please share this, even if you're not disabled, because there are tons of people I know who are stuck in their houses because they can't get around in the snow. A pack of zip ties costs about $5, which compared to $200 knobby snow tires is a big save, and if you want to invest you could get colored zip ties.

I have another thought rattling around my head;

I know it’s really easy for people to assume a man or masc person getting help with something is simply wielding false incompetence - or that that they view whoever is helping as a maid or a servant.

But I need people to stop blanket assuming shit like this. If it’s all just things you’re seeing rather then a bad situation you’re being told about directly; Take a step back and ask yourself if you might be misconstruing a situation you don’t have all the context for.

Example; I need meals made for me, I need help with basic chores, I need help getting myself drinks, I need help caring for pets. Outwardly, I look fine - but the thing a lot of people with no inside perspective don’t know that I’m actually severely disabled. What might be a simple task for someone else could wipe me out for days. And because of this I’ve actively had people call me a “man child” when I admit I need help with these things, and say they feel bad for my partners having to “baby me” because of this.

I’ve seen so many threads bashing men and masc folks as a whole for not being able to cook for themselves, do chores entirely by themselves, ect ect ect.

You’re hurting people in the crossfire - especially disabled men + masc folk, and men + masc folk who have suffered abuse (since abusers often intentionally don’t teach their victims life skills in order to keep them dependent).

I don’t know how many times this has to be said but:

ELEVATORS SHOULD BE THE STANDARD.

RAMPS SHOULD BE THE STANDARD.

SIGN LANGUAGE INTERPRETERS SHOULD BE THE STANDARD.

BRAILLE MENUS SHOULD BE THE STANDARD.

ACCESSIBILITY SHOULD BE THE GODDAMN STANDARD.

Thank you and goodnight.

Sincerely, a very fucking pissed off disabled person.

Big shout out to the coalition of Catholic nuns who just told the US bishops to stop being transphobic.

“As members of the body of Christ, we cannot be whole without the full inclusion of transgender, nonbinary, and gender-expansive individuals,” the letter reads. It goes on to argue that “we will remain oppressors until we — as vowed Catholic religious — acknowledge the existence of LGBTQ+ people in our own congregations. We seek to cultivate a faith community where all, especially our transgender, nonbinary, and gender-expansive siblings, experience a deep belonging.”

The letter also states transgender people are “experiencing harm and erasure” in various ways, listing daily discrimination, a groundswell of state-level legislation aimed at LGBTQ rights and “harmful rhetoric from some Christian institutions and their leaders, including the Catholic Church.”

Read about it here

“Exclusionists are pathetic.” I absolutely love that last part because it’s refined nonsense.

Cripples are not “exclusionists” or “pathetic” for asserting that cripplepunk is for physically disabled people. That is literally just a fact.

Copy pasting your queer politics over every marginalized community you encounter is pathetic.

Calling people “exclusies” for experiencing traumas and oppression you don’t is pathetic.

Refusing to educate yourself is pathetic.

Lying about terms and a community created a decade ago by a dead person who EXPLICITLY STATED who it was for

is

so. fucking. pathetic.

So excited to have a flare up during my EOC exam tomorrow and not being allowed to have any of my diy treatments because the school refuses to accommodate me, so fun!!! /src

But seriously I had a flare up in the middle of my SAT and it caused me to not be able to finish a section due to incoherency and pain. Literally just let me have my salty beverage…..

onion not even doing satire at this point

Holy shit. I just realized something and I need to share it with the rest of the disabled community.

If you're a disabled American who can't get married because you'd lose your medical coverage, I have an option for you

Handfasting Ceremonies. These are ancient pagan marriage ceremonies (but you don't have to necessarily be a pagan to do them) that are still practiced today where a couple’s hands are bound together to represent the binding of their souls. It's an official marriage ceremony and people need to be ordained to perform them and everything, BUT they’re not considered legally binding in the United States. You can still do them, but they won’t have any legal repercussions. So, if I ever want to get married, I could just do a handfasting ceremony and be married, but not have to legally lose my health coverage. AND handfasting ceremonies are open to same sex couples too!

I've cracked the code. PLEASE SHARE THIS AROUND, THIS COULD BE A GREAT OPTION FOR A LOT OF DISABLED FOLK WHO WANT TO GET MARRIED BUT CAN'T BECAUSE OF BULLSHIT MARRIAGE LAWS!!!

• this user thinks they need a mobility aid, but is a minor and feels like their parents wouldn’t take them seriously if they said so •

For those out their with heds that use mobility devices, what device do you use and what was the point that made it a need ? I’m so tired and I’m pain on the daily in either my hips, knees or ankles (and that’s only below the waist)

I’m dependent on my parents for getting care and they are relatively supportive as disability is common in our family but my mom seems reluctant to even discuss the possibility that I may need an aid.

Any advice?

(Also going to the doctor this week to ask about symptoms of pots I’ve been having for years and stomach problems)

Me when I went to the endocrinologist and they assumed I didn’t know what my autoimmune disorder was. Not like I’ve been dealing with it for 4 years.

Didn’t even think to check me for what I was soon after diagnosed with by a geneticist.

My doctor shocked I know more about my debilitating condition than him

Spicy-brained friends, I would like to propose an update to the very useful ‘if you hate everyone, eat, if everyone hates you, sleep, and if you hate yourself, shower’ mantra to live by

Have you suddenly become a petty, hateful little gremlin who thinks people should face the firing squad for (checks notes) leaving teabags on the counter, breathing loudly, or daring to exist in the same space as you? Perhaps mundane and reasonable requests like ‘hey, we agreed to hang out now, let’s hang out’ make you want to scream and move to a yurt in the woods.

You. Are. Overstimulated.

People talk a lot about being overstimulated, and the physical/mental effects of it. What I haven’t seen is people talking about what it does emotionally, and it took me an embarassingly long time to link up those nitpicky, resentful emotions with the state of overstimulation/meltdown/shutdown.

These feelings do not mean that you’re a bad person! They probably aren’t how you actually feel about the people around you. They probably do mean that your nervous system is at its absolute limit and any request/demand/stimulus is Too Much and taking you into fight or flight territory.

Go lie down in a dark room for an hour, or find somewhere safe and familiar to stim for a bit. If it’s happening a lot, schedule yourself regular low-stimulation shutdown time

Signed: someone who moved in with their nearest and dearest only to have a massive crisis of faith about Suddenly Hating All of Them. I don’t hate them, it’s just overstimulating living with people. If I can spare anyone else a similar 9 months of suspecting that they may actually be a bit of a shit person, then this post is worth it!

dear people who think "how could you even function if you *actually* had all that" somehow disproves a person's everyday struggles, kindly shut the fuck up <3

Tag yourself as a random element based on stupid logic

I'll go first

I'm fire because I snap crackle and pop

I need the sleep that a cat gets and bonus of having warmth to soothe my joints? Hell yeah I’m sleeping on a warm surface

Pls reblog if u vote :)

I Will head canon Frankie Stein with Ehlers Danlos Hypermobility and no one will stop me.