I hate the look on able-bodied people's faces when you can't do a thing that you could do the day before. The look of disappointment, confusion, the "Oh but you could do it before. Are you SURE you can't do it?" Like yes, Brenda, I'm sure that I am in too much pain to function/move from my bed right now so going for a walk when I could move 50 feet yesterday without my cane IS too much.

Rating names/terms for Ehlers Danlos Syndrome:

Ehlers-Danlos Syndrome: 10/10 Lawful neutral, it’s the official terminology, lets you know what’s up

EDS (in all caps): 9/10 Sometimes confused with other unrelated conditions and acronyms but usually works

EDs (‘S’ is lowercase): 2/10 Usually refers to erectile dysfunction or eating disorders, which causes a lot of confusion.

Ehlers Danlos: 8/10. Good shorthand while still knowing what’s going on.

Earers Daniel’s Syndrome: 1/10. I have only heard this once, from an ER doctor. He said it to me as he turned away from his screen (which was pulled up to the Web MD page for EDS) and proceeded to mansplain my condition to me inaccurately. At least he tried.

“Eyers Dan—“ *waves hand around*: -5/10 I’ve heard this one a lot from medical professionals. I just know I’m about to be malpracticed and am already planning the quickest way out of the situation.

Zebras: 6/10 I like the imagery, I like mascots, I like the story (when doctors are in med school they’re told “if you hear hoofbeats, think horses, not zebras” but them zebras are missed) however, I have two criticisms: a) more rare conditions are out there, and zebras technically refers to any rare diseases, not just EDS b) I feel sad when I think about how it basically calls EDS the “I was medically malpracticed disease”

EDSers: 8/10 a cute lil shorthand for “people with EDS”. Easier to explain than the zebras thing

hEDS/vEDS/cEDS/including subtypes: 7/10 I like the idea of being able to know what your subtype is and find people in your sub community, HOWEVER my only concern is that it can feel (and used for) invalidating people without a genetically confirmed subtype because of inaccessibility. I haven’t had gene testing because I can’t afford it— but I have clinically diagnosed EDS, which has been confirmed at multiple hospitals by multiple specialists. I score a 9/9 on the Brighton, meet all major criteria, and meet almost every other minor criteria for EDS on top of that. But I don’t know my subtype yet. I don’t hate/dislike people who use this term and I don’t discourage it, but I do encourage mindfulness about genetic testing accessibility and privilege of access.

Bendy disease: 10/10 a silly goofy joke I say with friends “I cannot walk up stairs on account of my loosey goosey bendy disease” which is always funny to me. Even with my serious things like “my life threatening cardiac conditions are rapidly progressing” you add “on account of my bendy disease” and bam theres my coping skill.

Ehlers: 3/10 a step in the right direction, but it sounds like “yellers” and dismisses half of the team that described the condition

“Double jointed”: 1/10 I was told my whole life until I was 18 that I was just “double jointed” for starters, it’s medically inaccurate. You’re hyper extending, subluxing, or even dislocating joints whenever you’re “double jointed” in a joint. There is not two joints there (unless you’ve had x rays and for some reason genuinely do have two joints in that spot). I honestly hate this term and it’s incredibly dismissive of the pain that happens with EDS while also making it seem like a super power that we’re encouraged to do

Contortionist: 1/10 [NOTE!!! some contortionists DO NOT have EDS and can just bend like that. Some have benign joint hypermobility. But many contortionists do have EDS.] In the context of people with EDS, I hate this term. It’s often the first thing people jump to when I explain my condition. They see my crippled ass in my wheelchair/powerchair or limping around with my cane/crutches/rollator, usually in multiple braces/supports (and thats just external noticeable-to-everyone things, let alone if you hear any aspects of my daily life) and their first thought is: “wow!! So you can entertain me like it’s a freak show!” And not “holy shit dozens of dislocations per day and countless subluxations per day must be excruciating”. I did contortions when I was younger to get praise and due to peer pressure. Fuck that noise I will not be your ugly law era freak show creepy cripple p0rn. Fuck everything to do with that actually.

Buckle up folks because this is a long post -

Tips for newly diagnosed dysautonomia patients:

- Drink a lot of water (so much water guys. Especially if you have hypovolemic types of dysautonomia, like hypovolemic POTS, it’s crucial)

- Keep up with electrolytes/ salt intake. Vitassium makes salt pills, chews, and tablets. I personally prefer the tablets because I can just suck on them for a while, but I know a few people who prefer the pills.

- Compression socks help, A LOT! One major component of dysautonomia, in general, is blood pooling (which can greatly increase your risk of fainting). The compression/construction helps blood flow and return back to your heart and brain

- Your disability(s) are valid, even if you don’t pass out/pass out a lot!! Only about 1/3 of people with POTS (one of the most common types of dysautonomia) pass out! And of those, few pass out regularly/daily (such as myself). No matter what, you are valid! Even if you’re undiagnosed, even if your case is “mild”, even if you manage it well without much help; you’re valid!

- Especially for those of you who are just being introduced to disability (likely because of long COVID), it’s okay to grieve the life you used to have/planned to have. You can live a wonderful, full life with these conditions (and other conditions), it just may require more accommodations than you anticipated!

- DONT BE AFRAID TO ACCOMODATE YOURSELF! Seriously, use mobility aids, get a 504/IEP, and make your space(s) accessible to yourself! I use forearm crutches for short distances, but because of how severe my dysautonomia is, I’m reliant on a wheelchair (with someone pushing me/motorized aid) to go more than a couple hundred feet/longer (or anything that requires standing for more than 5-10 minutes).

- Get a pulse oximeter or watch! Certain types of dysautonomia may cause lowered oxygen (hypoxia) because of a lack of available blood. It’s extremely important to monitor this and make sure you’re aware of your oxygen levels!

- Find community! I personally love using “stuff that works”. It not only lets you crowdsource for information about medications or treatments, but lets you message other people with the same condition(s) as you.

- If you feel like something is wrong, please talk to your doctor. I know it’s scary, especially if you have medical trauma/PTSD on top of these conditions, but it can literally be lifesaving. I noticed a sudden uptick in chest pain and casually mentioned it to my doctor. Sure enough, we found I have two types of arrhythmias (p-wave inversion and flutters) Now I’m pushing for genetic testing to see if my diagnosed EDS is vEDS/cvEDS

- Don’t be afraid to start and try medications! I’ve tried numerous medications and haven’t found anything that works quite right yet, but that doesn’t mean I won’t :). And some of you may not need medication! You may be able to manage with lifestyle changes, or IV therapy, which is great! Do what works FOR YOU. Everyone is different!

- Rest days are productive! Your body is working really hard to keep you alive, it’s okay to take a break! Take care of yourself, really, it’s okay to conserve spoons.

If anyone's got tips on helping winging scapula with ehlers danlos hit me up.

YALL I FINALLY GOT MY OFFICIAL DIAGNOSIS FOR EDS-III THEYRE GONNA WRITE A LETTER AND EVERYTHING IM SO HYPEDDDDD

This is how you create addicts

TW: Chronic illness, pain and medication

Public health insurance denied my treatment with medical cannabis and I'm devastated. I know that living in a country with public healthcare is a huge privilege and I'm incredibly grateful. It's just... hard. Since my sample bottle of cannabis oil is more than half empty, I skipped my morning dose to safe what I have for the nights (falling asleep better is a HUGE plus). Big mistake. My pain is so much worse, especially in the hands. I didn't realize how well the stuff worked because the pain was never gone, but it was much, much more tolerable. Feeling it come back with full force is a huge blow for my mental health as well.

Everything my health insurance company suggests as alternative treatments are things I've been doing for years and they don't work. Which doctor should I even go to when no one in my country is specialized in my disease? When even centers for rare diseases turn me down? Meanwhile, everyone and their grandma tries to put me on opioids. My fucking family doctor wanted to push the stuff on me. Great idea for chronic pain caused by an incurable disease.

I won't give up and will appeal against the negative decision, but honestly, when you're already in a bad place both physically and mentally, it's tough. Sorry for the rant. Some days are just worse than others.

People telling me I look so good. Asking what my secret to weight loss is.

You know what the secret is?

~ poverty ~

Random number calls: Hi this is the allergist with your refferal.

Me: Cool yea I had to get an emergency epi pen, I think I need a MCAS eval.

Them: the next appointment is at 3pm in 2 months and the only office you can go to is the one 75 miles away from your home. Does that work?

Me: No it fucking doesn't but I can't just die

Them: Great! You're all scheduled we will see you then!

.

.

.

What. The. Fuck. America.

I would like to add I don't drive 🤦‍♀️

I HATE being disabled <- body hurts for a little too long

CW : VENT THAT HAS NOTHING TO DO WITH MLM BUT I NEED TO GET OUT

CW for disabilities and self-harm

I became sick over memorial day weekend (for those who don't know, we have the memorial day off.). Now all of my disabilities are flaring again, and i just got out of a huge flare not even a month ago.

I'm convinced this is because i don't wear a mask anymore. and before you blame me for my own issues, I don't wear one because my family doesn't anymore. I don't like to wear them in the house and due to breathing issues, i cannot wear them for a long time anyways. If i'm gonna get sick being at home or out in public, what's the point? OFC i would wear one if you asked me and would always warn you if i was sick because disabled ppl and able-bodied ppl with preferences matter.. always.

Anyways, I'm just in so much pain. I want to cry and scream and rip out my hair. I want to throw things across the room but all of that would get me recorded and prolly sent back to the psychiatric hospital.

i can't breathe without wheezing and coughing, my knees click when i walk and i keep going into pre-syncope. My fingers ache and i lost my hand brace for my wrist when it locks up. My hips hurt and even sitting criss-cross no longer helps. my back hurts and i can't crack it and i have a major headache.

I had to come home from school today, i begged my parents until they gave in. I'm scared. I'm sad. I'm depressed. I feel as if it'd be better if i just .. wasn't here. That way nobody would have to suffer. anymore. idk

I'm just so.. tired, man. Nothing is going my way, it never has. I'm so so tired, i feel so numb. I don't want to be here anymore.

Well, it certainly has been a journey this past 4 years.

If you could help me share or spread this, it would be appreciated.

Today I made my appointment for my treatments starting on the 11th. It's either this or surgery (some of you already may this know this story so sorry for repetitive). But enough is enough.

My collarbones are dislodged, they have been for a while and the more I see the symptoms the more I realize this is likely what's been so fucking with me and why no amount of PT, steroids, massage, dry needling, trigger point injections or you name it (I probably have tried it). I can't fall asleep because of this and I can tell they're poking on a nerve, and sometimes I can't breathe when I move too much the "wrong way".

This past two months have been great. By reconnecting with my friends I have discovered a new will to live, however that can only take me so far emotionally. I need address the structural issues with my body.

I want to be able to sleep without worrying about my bones stabbing my arteries or nerves without feeling like my arm is going to fall off. To shower without help.

This is my Hail Mary. Anything from this will be used to finance Prolo/Prp, moving out, PT and seeing a cervical chiro (they are less abrupt on the joints).

From the Zebra of Zodiac!!!

Everything hurts

Flare ups suck

I hate my stupid body

This sucks

I can barely move-

Homemade bible cover. Don’t mind the terrible stitching Ehlers Danlos flared up.