#i dont wanna call it a subluxation

[linogram]

is it normal for my joints to feel (for lack of a better word) stuck and like it has to be physically put back in place after literally doing just regular activities?

[citrusdevilll]

just mentioned to my dad that im gonna talk to my doctor about me having EDS, quickly explained what it was, and then he immediately said that my issues aren’t severe enough for me to have it :/ i wanna cry.

i know its not normal for my joints to be aching all the time, i dislocate and subluxate things all the time, over-extend my arms, am constantly sore, and i keep it all in bc they would just call me a crybaby (my sister), but that doesn’t mean i dont suffer!

not to mention my undiagnosed adhd and autism, that i have not mentioned to them bc im highly masking and have lower support needs, but that doesn’t mean i dont struggle!

my issues are still here, i still exist!

i just dont know what to do, i wanna ask for mobility aids, just some crutches, but i know they will think im just being dramatic.

this is awful.

[cripple-punk-dad]

hey there cpunk dad i have a curious little question

so i have various disabilities that im in the process of getting diagnosed yay that cause me chronic fatigue and also issues with walking due to joint pain (and rarely, but still sometimes, subluxations/dislocation)

would i qualify as physically disabled enough to be in the cpunk community? because i am punk and currently use the term ecopunk specifically since i value the environment and try my best to protect it, but i feel like my being disabled is very central to my being punk,,, but also idk if im quite disabled enough (or if theres an entry level requirement? like if its enough that i am physically disabled?? who knows)

feel free to ignore this if you dont wanna answer questions but, i was just wondering so i dont say something i shouldnt

Hello my friend, kill the cop in your head that says you need to ask permission to call yourself disabled, physically or otherwise. It's not my place to tell you what you can or can't identify as

[wrenimod]

grieving what i used to have and what i wish i still had recently since i think my job is causing issues with my legs and hips and ribs.

today i had to call in and do nothing and its been just super bad mentally. i have a tendon moving in my left shin, pain behind my right knee, my right hip keeps subluxing, and my ribs wont stay in place either. its been like this for a few days now and idk what to do other than just push through and make everything worse

i cant get accommodations without a doctors note and i have an appointment with a new doctor scheduled but shes on maternity leave so i have to wait 2 more months. i dont want to call in more because i dont work a lot as is and i wanna keep my job.

idk what to do. i don't even know if i can shower tonight but i cant get help from my gf because my mom's really weird about things.

[talpup]

Personal Ask/Answer

So I got this ask:

You said you had a cracked hip. Just how old are you? lol sorry Don’t mean to sound rude that just seems like a old person thing. I’m not making fun and dont want hate so can you not use my name when you answer. thx

I don’t think you rude. But I also don’t know what you consider old. I’m in my early 40′s. I’m not looking for attention due to my illness’ but I’m not ashamed by them or try to hide them either. In the past I’ve mentored younger kids in my area who had been diagnosed with chronic conditions.

As for myself.  I’ve had hEDS my whole life.  It’s a rare genetic syndrome that many doctors even have to google and read up on.  Because of that it took years to be properly diagnosed.  Most people with hEDS also have POTS and MCAS.  I’m one of those most.

In my early 30′s I was diagnosed with RA.  Like the things listed above, there’s no cure.  Though it can be treated.  Along with a slew of other meds, I take weekly injections of MTX which is a form of low dose chemo, and have biologic infusions of what I call poison juice every 6wks.

Thanks to the damage hEDS has caused from the countless dislocations and subluxations I also have OA.

It was the spectacular fall I had while my hip was subluxed that likely caused the crack.

Again.  I’m not looking for sympathy.  But if you have health issues of your own and ever wanna chat or vent, I’m here.

[heartfucksmouth]

I've had a really intense, long day using way too much brain power bc my thoughts dont wanna slow down and I'm constantly psychoanalyzing myself and trying to keep myself together and using skills nonstop and I really kinda do feel like I'm losing it a little bit and I wish I knew what this was when it happens cuz it's basically like a weird manic state that happens when I experience a lot of stress? Sort of?

Cuz I'm feeling pretty fucking smart and like I've figured a lot of stuff out but it feels chaotic and I'm noticing "connections" between things that maybe have no connection and omg synchronicity but its ... idk. I dont trust myself when I'm like this cuz I feel more reckless and less in control, BUT I was actually very productive and controlled today? Like my awareness was amped up if that makes any sense, I spoke up during therapy (also bc i had a LOT to say) when she might have been lingering on something I already figured out, I made phone calls that I didnt even want to make, and only stopped because I got one of my weird migraine-not-migraine headaches that feels like someone is driving an ice pick behind my eye and my eye feels like its drooping (its not). Like I was more assertive? But I felt so tenuous, like any wrong thing could set me off and i had to reign myself in from ranting and raving about literally everything I thought of.

Just want to shut my brain off. Just want to rest. Just wanna snuggle my pup forever.

Oh idk if I even wrote on here but my ANA is high (as it always is) so my doc referred me to see my rheum that I hate for it since i have new symptoms, called and made an appointment after they tried to ask me if i didnt just want to keep the one in JUNE lmao what, then went to update my insurance with them aaand they dont take my insurance anymore haha sooo on Monday I'm calling a new rheum and who knows when I'll get in to see her but I am finally making this step forward so overall it's a win, even tho I want to literally slap my old rheum and tell her how much she sucks still. Soooo idk what my doc expects for me, but I see her like next week and I'm feeling maybe marginally better since I started b12 but my other symptoms are still kinda concerning (mainly neuro ones like my headache type things that are happening, itll feel like small explosions in my head that are painful for 10 seconds and then they go away, I've felt water drop on my forehead/arms that isnt there) just weird stuff. And obviously my hip subluxing is bad, and I should prob finally get a tilt table test for a diagnosis bc my feet and knees turn purple when I stand for 40 minutes and I feel like I'm gonne die.

K this is long and rambly and I'm gonna watch a movie and go to sleep so maybe this phantom thumb can stop pressing on my fucking eyeball/browbone.