#heds

little rant/medical stuff about me- although i don’t talk much about my disabilities on this blog, i feel like this is something thats been on my mind a lot. a big part of the reason I’m pursuing wl and taking care of my body is because of a condition I’m highly suspected to have called hypermobile Ehlers Danlos Syndrome. (hEDS) It’s a fairly common disorder, especially in these past few years but I’ve struggled with it A LOT these past 6 years. hEDS has personally caused me so much agony and chronic pain including subluxations, dislocations, chronic joint pain and a whole laundry list of comorbidities. it’s something that I thought I wasn’t “flexible enough for” until late last year when I partially dislocated my left shoulder from working in the infant room at my previous job. My shoulder basically no longer stays fully in the socket, even when laying down. it’s really motivated me to really lock in and take care of my body, because even though I can’t fix this, I can take the steps to take care of my body and lessen the pressure my joints have on them. I will likely live with the pain and discomfort of hEDS for the rest of my life, but that doesn’t mean I’ll give up and not try to manage it with the important lifestyle changes that I’m trying to implement.

the stickers are worse than the actual injections

My hEDS gifted me naturally thin hair, so wigs and I are in a long-term committed relationship. With that in mind, can we please stop using fucking filters in wig review photos? I’m trying to see what the wig looks like, not what you would look like if you were a mystical woodland princess rendered by Pixar. I need to know if the fibers look natural. I need to know if the hairline is convincing. I need to know if the part looks realistic. Instead, half these reviews look like the wig was photographed through three beauty filters, a ring light, divine intervention, and the tears of an Instagram influencer. I am shopping for a wig. I don’t give a FUCK what YOU look like. Show me the lace. Show me the flyaways. Show me the wig under the harsh lighting God intended. Please and thank you.

Ppl can essentially pay off a dr for a heds dx. pisses me off, yay capitalism. Also hypermobility /= heds. All heds ppl are hypermobile but not all hypermobility= heds. I guess we need venn diagrams for this. Ppl don’t seem to understand

I think it’s so silly when everything about an issue you have says ‘GET PROFESSIONAL HELP’but like. No I don’t need to!! It’s normal actually :)

https://coreycreates27.etsy.com

i love the south but my body hateeeees the heat and humidity holy fuck.. the heatwave (heat index of 105+) triggered my everything and now i’m incapacitated which is SOOOOOO fucking cool and awesome!!!!!!! i love it!!!!!! so much!!!!!!!!

i’m always jealous when non hypermobile people stretch in front of me like wow that must feel so good u don’t have to worry about going to far and making the pain worse

Too tired to research nutcracker syndrome but I have most of the annoying anatomical heds things, so I prob have it. fml

my wrist dislocated while i was vacuuming ;/

huh? my degenerative illness? oh, you mean my rot. my decay. my decomposition.

Between the constant rain the past few days and physical therapy this morning: Ow. Opiod day it is 😔

i didnt work out for long enough and now forget all the shit im supposed to do

update on my sub usage: i think i’m starting to experience physical side effects from snorting it (other than vomiting and nose bleeds)… i have heds so everyday my body hurts, but these past few days it has just been progressively getting worse, and i’ve been dislocating more frequently. i attribute it to the sub cuz precipitated withdrawal can give you body aches… lemme ask my peer recovery coach cuz he used to do the same thing. i literally trust him with my life, after all. the big question you’re asking yourself: is she going to stop? idk… idk. i know i should, but idk

does the fatigue and nausea from the NORSPAN/Buprenorphine patches ever go away??? i’m on my fourth 10mcg/h patch and i’m constantly nauseous, sleeping for 12+ hours daily, barely able to eat. i’m trying to stick it out but it’s really hard.

Hyperactive-impulsive type ADHD brain in a physically disabled body is such a cruel joke I just need to go fucking run around

https://coreycreates27.etsy.com

i have POTS, specifically the kind that causes blood pooling. i want to wear compression socks or compression leg-sleeves but i feel like every time i try them it causes major blood pooling to my feet to where i cant even walk.. anyone know anything about how to help with this lol

Why the hell do I need to answer four hundred million questions just to get physio for EDS? Half the questions are asking like ‘do you feel anxious’ 'do you often feel like something bad is going to happen’ 'are you often sad’ like yeah but that doesn’t mean I’m not hypermobile

oh yeah I’m having a low pain day, as long as don’t stop and think about any part of my body and how it feels