crippled-punk-guy

[crippled-punk-guy]

Already being disabled and then getting injured is so unfair

Like PLEASE my legs already hurt enough

#punching the air rn #I fell while literally just walking and sprained my fucking ankle #disability #hypermobility

[crippled-punk-guy]

Being a disabled worshipper of Lord Hephaestus, a lot of people tell me that Apollo should be my patron.

But anyways, the people who have told me I should primarily worship Lord Apollo often say it’s because He is the God of healing and I should hope to be healed.

Firstly, it is not really anyone’s business who I worship, what I choose to share here is only a small fraction of my personal religious and spiritual experiences and beliefs. And furthermore, I do worship Lord Apollo and have a very strong relationship with Him.

I think that I was most drawn to Lord Hephaestus as my patron because being disabled means I so rarely get to see people like me in representation, and even more rarely even hear of deities who are disabled. And I’m a crafter, I have been my whole life, and I couldn’t live without art. I really feel closest with Him.

Beyond that, why do people think I need to be healed of my disabilities? Or that I should strive towards that? My disabilities are all I have ever known, and I can’t separate myself from that. Also many of my disabilities are genetic and cannot be cured or treated so why spend my energy on that.

That’s not to say that I don’t have a relationship with Lord Apollo, or that I don’t ask for any favors with my health. I make offerings daily to Lord Apollo, and I often ask of Him to help me to stay out of the ER, to have strength in PT, for a flare to end sooner, all sorts of things related to my health (among other things in His domain). At least one of my alters (that I know of) does honor Lord Apollo as his patron.

But at the end of the day, I have chose Lord Hephaestus as my patron because I feel closest with Him, and it is a deeply personal connection that I choose to foster that relationship in a way that feels right for me and for Him. It’s my choice.

Please be respectful of this and keep your opinions about others worship to yourself.

[crippled-punk-guy]

Apparently the way I was sitting had my knee out of place for a decent amount of time

Dear FUCK that hurt to put back in

And like a minute later I’m fine. I hate hypermobility what the actual fuck

#crying in the club

[crippled-punk-guy]

Happy rare disease awareness day!

Today I would like to raise awareness for myself and other people who have a rare disease or health concern that hasn’t been officially identified.

There’s a very long and convoluted way my doctor decided to word this because my insurance refuses to allow me genetic testing to confirm, but in laymen’s terms I have a clinical diagnosis of classical like Ehlers Danlos Syndrome.

Classical like or type 2 EDS behaves very similarly to hypermobile or type 3, with a couple extra symptoms and a few different manifestations.

Type 2 is caused by having duel mutations of the tenascin X gene, and some doctors believe type 3 may be caused by having only one of those genes mutated.

Because of the requirement of having both mutations this sub type is markedly much rarer than a couple of the others, estimated at roughly 1/1,000,000. It’s very difficult for people who have the symptoms of this type to be taken seriously as most doctors just think it’s a more severe version of type 3.

Classical Like Ehlers Danlos is a distinct type because of fat tissue and distal joint involvement.

Most people who have type 2 have bracydactyly, a deformity of the distal (small finger and toe) joints. Bracydactyly means that my fingers appear shorter than usual, the joints in them are deformed and does not allow for a full range of motion, for me personally mostly my thumbs are affected. I am missing nearly half of my thumb joint that connects to my hand, and my pinky toes are missing a joint entirely. This makes it so that any time I try to hold something my thumbs are essentially forced out of their natural position and have to partially dislocate. I can not use standard forearm crutches anymore because of this and have had to switch to platform to preserve my hand function. I also sometimes wear thumb braces if it gets to that point.

When talking about fat and tissue involvement we must touch on subcutaneous spheroids. Many people with EDS have something called piezogenic papules of the heel, small white lumps that become visible when putting pressure on the heel. Imagine having that but in your entire body. In EDS2 patients the following process occurs:

1. Our bodies already struggle to pump blood to the very small areas of our body, this includes the very small veins that run through the layers of fat.

2. When the blood supply gets cut off to these areas the EDS2 body responds by calcifying the fat that is no longer receiving blood flow.

3. This causes the formation of subcutaneous spheroids, very hard lumps that are partically anchored down but have some movement.

I’m sure you can imagine this is extremely painful, especially when they form in areas such as the crotch or armpit. There is nothing to be done other than gently massaging them until they pop in the least painful way possible. If you allow them to build up you will have what happened to me a couple years ago which led to realizing I have EDS, my entire calves were rock hard with nodules that a physical therapist had to work out over the course of four months. They can and will merge to make a larger one, locking in nerve endings. And no, losing weight isn’t necessarily the solution because if the fat around them gives away they will pop even more dramatically (at least for me personally). The only thing I have found that helps is prevention, massaging the areas they typically form in and using a tens unit if one has already formed. Placing the electrode directly on top of it and very slowly increasing the intensity is the only way for me to get rid of them without extreme pain. Also, they can pop randomly on their own. This is very jarring and extremely painful. And is one of the explanations as to why I randomly bruise.

There are many other ways EDS affects my life, but I would like to take some time to acknowledge health issues that are not identified.

I have a leg deformity. No diagnosis, no known cause. It just happened. When I was very little a doctor noticed it and said it was nothing to worry about, that I would grow out of it.

Well it turns out that is in fact not how any of that works. As a child I had such a minor deformity that it may have been able to be fully corrected if I was given leg braces, but doctors don’t want to admit you need something like that until it’s too late.

When I was around 15 I saw a rheumatologist who explained to me exactly why my legs look the way they do and what internally is happening that is actively preventing it from ever being fixed now. My hips either were what caused it or have now formed in a way that my legs will always be in this position, slightly out turned at the hip joint and again at the knee, causing my legs to appear splayed when relaxed. Also, one leg is longer than the other. The longer one has about 2 inches on the other, so it ended up supporting what the other could not. Because of this I am simultaneously pigeon toed and slightly bow legged, so one leg points in and the other out. Adding on that EDS makes your joints more loose, the doctor told me it seemed like they were both just making each other worse and she recommended I just try to not walk when possible.

No one really knows if the deformity is separate or because of EDS, but either way I live with both. I live with the knowledge that 1. I may never get genetic testing to figure out if it is actually type 2, most doctors don’t care enough to learn about anything other than type 3 if they know anything at all. And 2. I may never get to know if my legs could’ve been made better, I still have enough walking ability to get by but there’s also nothing saying it won’t get worse. We don’t know. And I’ve seen enough doctors to tell you they don’t care about knowing. My primary is amazing, but every specialist she tries to send me off to just gives me the run around and is like “well you *can* walk *some* so clearly it’s fine” instead of acknowledging that it is in fact not at all fine actually and I would appreciate being helped if there’s any to be had.

This is long and proofread slightly but I may have missed something grammatically or spelling wise.

Disclaimer: this is not at all an exhaustive list of either EDS2 or my deformities and how they affect my life. There are many more symptoms to both I either did not mention or do not feel comfortable mentioning. If you believe you may have any of the Ehlers Danlos types please seek out a doctor who is knowledgeable in that area.

This rare disease day, I want to remember and acknowledge those of us who never got our answers, and those of us who answers do not exist for.

There are 13 identified types of EDS, possibly a 14th. The most common (type 3) is estimated to effect 1/300. The rarest type (type 14) is known to effect 4 people in the entire world.

There are people who don’t even have a hashtag to post under, there are disorders and conditions that have only 1 known person effected ever.

How do you live your life with such a debilitating condition without even getting to know what it’s actually called? And why is it considered acceptable for the medical community to just push us aside instead of looking for the answer?

My EDS was identified as almost for sure being type 2 by a physical therapist who specializes in hyper mobile disorders. And yet I am still diagnosed with “hypermobility spectrum disorder with musculoskeletal involvement” which is a real fancy way of saying hypermobile EDS (I will explain why this language is used in a later post today or tomorrow).

When you change the language you use you change the meaning, and when talking about someone’s health knowing what is going on in your own body is very important. Imagine if you were diagnosed with something but they told you they’re going to call it something very different just because it’s easier. That is life for many many chronically ill people. A doctor can directly tell you it’s one thing and then put something completely different in your chart just because doctors and insurance are not on our side in most cases.

This rare disease day, remember the diseases and disorders that are literally written out of your history because it’s easier than having to admit what’s actually going on.

Leave an offering today to Hephaestus.

#eds #classical like eds #type 2 eds #chronic illness #disability #wheelchair user #ableism tw #medical gaslighting #genetic disorders #hypermobility spectrum disorder #chronic pain #hsd #rare disease awareness day

[crippled-punk-guy]

IM SO MAD AT THE SHAME SOCIETY PLACES ON DYNAMIC DISABILITIES

yes, I was walking unaided yesterday; yes, I am using forearm crutches today

yes, I was using forearm crutches but left them behind to go to the bathroom yesterday; yes, I need to use them even to walk two steps today

yes, I went up the stairs unaided yesterday; yes, I needed my crutches to go up to the stairs today; yes, tomorrow I might need to scooch upstairs on my ass because I won't be able to walk them

yes, I walked unaided to the car to get my crutches out of the car in the morning; yes, I will use them to go on a walk in the afternoon

DISABILITY CAN BE DYNAMIC, MOST PEOPLE ARENT ON A FIXED POINT OF SUPPORT NEEDS AND MOBILITY, WE'LL HAVE GOOD AND BAD DAYS AND I DONT NEED TO EXPLAIN MYSELF TO YOU

[crippled-punk-guy]

Senate trying to pass a bill that would force you to use your government id just to use the internet. That means no anonymity at all, ever, and that every pro-Palestinian organizer is immediately a target that the government can track. And they will use it explicitly to come after protestors and organizers.

[crippled-punk-guy]

Public service announcement:

You can talk to a wheelchair user without putting your hand on my shoulder. It’s weird. You don’t randomly touch anyone else. I am not a child. I’m getting to the point I’m just gonna start smacking their hands away. This has happened too many times. Every single time I go out in public without wearing my battle vest (spikes on the shoulders) some random old lady feels the need to condescendingly lean over me and grip my shoulder. It happens less with younger people which I’m thankful for but this has been a psa tell your grandparents to stop trying to pet disabled people because I’m done being nice about it.

Yes, they let people like us in public now. You can act normal for five minutes while we’re there with you.

#I don’t even understand why they do this #like genuinely what is the reason who told you to do that #disability #wheelchair user #ableism tw #vent post #Adonis speaks

[crippled-punk-guy]

Was reminded of something really funny by a friend so thought I’d share it

When I was getting my tilt table test done the person who was getting me ready asked what I wanted to watch on tv to help me relax. I couldn’t think of anything else so I just said National Geographic. Cut to me trying to calm myself down so they can get a good baseline of my levels while watching fucking wicked tuna

She came in once it was time to do the actual test and of course we both started watching wicked tuna. So here I was, strapped to a hospital table being suspended and given a medication thats supposed to mimic physical activity to get my heart to act up so they can record it. I start to feel like I’m passing out but it was like the slowest it’s ever felt, a lot more dragged out and I was in a weird half unconscious state. All I remember is one of the guys being really excited about tuna. It was apparently a pretty big one, too bad I was too busy with my heart rate being so high and my blood pressure being so low it didn’t even register on the machine for about five seconds I wanted to see that tuna.

One way to make your hospital visits more exciting is definitely wicked tuna 100% recommend will do the same thing if there’s ever a tv in the test room again

#pots #disability #disabled humor #chronically ill #wicked tuna

[crippled-punk-guy]

When they call me a cripple on the street and laugh at me limping along, I ask Lord Hephaestus to limp alongside me.

I think of His epithets, Amphigyḗeis, "the lame one"; literally "lame on both sides" and Kyllopodíōn, "club-footed" or "of dragging feet". How His disability is revered as divine.

And I feel less alone.

[crippled-punk-guy]

Shout out to everyone who is having a flare up during the holidays or because of them

Yes I know my limits

And yes I went past them

#decently sure I tore my rotator cuff tbh #but uh it’s fine #this is what I get for trying to lift and drag heavy things #felt it while I did it #kept doing it #regret it #disability #flare up #repetitive motion injury #eds

[crippled-punk-guy]

Hephaestus is proud of you 💛

To those who have a Disability, Hephaestus loves you and is proud of you.

For those of you who have a Mental Health problem, Hephaestus loves you and is proud of you.

For those of you at the moment that are in a bad family situation, Hephaestus loves you and is proud of you.

For those of you who are standing up to your bullies at school, Hephaestus loves you and is proud of you.

Hephaestus loves you and is proud of you all.

Keep going. Because you are doing great and don’t let anyone tell you otherwise.

[crippled-punk-guy]

Shout out to the ten year old who just got diagnosed. Shout out to the housebound fourteen year old. Shout out to the eighteen year old who can’t go to the university they wanted. Shout out to the twenty two year old who can’t get a job. Shout out to the twenty six year old with a caretaker. Shout out to the thirty year old who can’t buy their own house.

Shout out to young disabled people. We exist.

[crippled-punk-guy]

Image Description: A repost of an instagram post from @/teawithqj, with picture of Imani Barbarin, a Black disability blogger and actor, seated on a bench outside, grinning, with her name printed in pink beside her, with a quote reading:

“I’ve never once overcome my disability, but I have overcome the desire to slap someone every day of my life. 

And that’s what should be celebrated.”

END ID

[crippled-punk-guy]

So the US government is trying to redefine what disability means on the new US cenus and it would cut what qualifies as a disability significantly. If this happens, it will further limit access and funding for necessary disability services. This will impact millions. The government is accepting feedback on the census changes. This link allows you to send an email (already written but you can add what you'd like) explaining why this is not acceptable.

It takes less than a minute and all you need is your email, name, and city. Please do this if you're in the US. This could harm millions of disabled Americans.

[crippled-punk-guy]

This article is a good read and putting aside the fact I would never be able to use a chair like this anyway because wtf is that sizing I can see these “folding wheels” being a massive safety issue. My first thought was what if something damages the locking mechanism, if these chairs are meant to be rented that makes me feel they’ll fall into the same disrepair airport wheelchairs usually do. My local airport is on the medium to small side so instead of the hallway like loading areas we just have ramps that go up into the plane, I already feel so unsafe being pushed up one of those why the hell would you add on the fact your wheels could just fold in on themselves at any moment?

I’ve had a wheelchair break while I’m in it before. The castor of my old chair just completely snapped off at one point with no discernible reason, so shit like this scares me a lot. This thing seems like it’s unstable to say the least and like I would end up falling off a 15ft ramp at the worst.

#I’m serious this thing feels like a fucking death trap #after you’ve had a wheel come off while going down a hill you’re a lot less trusting about this kinda thing

[crippled-punk-guy]

I just got a new tattoo and I must say chronic pain does have one upside: in comparison being tattooed feels like nothing at all

Maybe this should be brought up to my doctor because I’m pretty sure it’s supposed to hurt and all of my tattoos have either not hurt at all or have been like 1-2 on the pain scale. (Well, my pain scale)

#disability #chronic pain #cripplepunk

[crippled-punk-guy]

Teo from Avatar The Last Airbender

is crippled/a cripple, supports cripplepunk and uses a wheelchair!

image one: [id: a dark grey flag with a dusty rainbow going from the bottom left corner up to the right, dark grey circles on top one in the middle of the other and teo from the show avatar the last airbender in his air-glider chair in the middle of the image. :end id]

image two: [id: a flag with a grey border around 7 vertical stripes ranging left to right from seafoam green, green, blue-green, dusty teal, dusty blue, desaturated blue, to light ocean blue. in the middle of the image on top of the flag is teo from the show avatar the last airbender in his air-glider chair. :end id]