Curate, connect, and discover
Not my dad having called me a slur used for physically disabled people anytime I was injured or in pain during my childhood, long before I was diagnosed with my disability. I didn’t know it was a slur at the time.
Not me assuming that after I actually was diagnosed with a physical disability that he would stop calling me that out off respect or at least ask me if I mind. No one really cares about a child understanding words that are meant to be used as an insult because if they don’t teach them they’re an insult they think they can get away with it. That’s not good.
But I was having a bad pain day and my dad once again called me the G word, which not everyone knows.
He didn’t say it in front of anyone other than me and my mom, and he didn’t say it in an insulting way, however he has a tendency to say rude and cruel things with no intention of them being either (or with the intent but not caring)
I don’t actually have issues with the word itself on reference to me. Gimp(y) and Cripple aren’t words that I am afraid to use to describe me but I don’t need my father to assume I’m okay with using it as an adjective.
I wonder how he’d react to me referring to him as it? Another chronic pain haver who happens to use a cane on occasion.
Hmm
Hey y’all!
I’m about to make a website for an organization I’m creating to help those with hidden/invisible disabilities and illnesses.
I want to be able to make this website accessible for people with all types of conditions and wanted to reach out on here to get any suggestions from people with those types of conditions.
I also created an Instagram for the organization but it’s still in the very early stages so I won’t be sharing yet…
Let me know if you have any suggestions or questions!
So recently I’ve bee considering applying for a balance and mobility support/service dog, but I want a bit more information from people who actually have them and aren’t paid to give a good review
(It’s also alarmingly difficult to find organizations that train balance and mobility service dogs)
I understand the financial drain and the time you need to put in to make the team function properly. I understand that a service dog is considered a medical device and not a pet, but they still need love and support and breaks like all loving things should. I understand that given my allergies a poodle would be the best option but I could also push for a less common breed.
Does anyone have an info, tips or blogs to recommend?
I really want to be independent once I move out and I really think a balance and mobility support dog would be helpful.
So I have a question for others with diagnosed hypermobile ehlers danlos syndrome
When I was diagnosed, the doctor said to me that there are no pain meds that can help with my pain that he is willing to give me because the only ones strong enough to work are highly addictive or can make you “high as a kite” in his words.
Has anyone else been told this? I mean it’s true low level pain meds don’t work on my joint pain but still, is there anything?
Yo I also have over pronated ankles and wear insoles and hypermobile eds, but I have been wearing these insoles for a decade and I was only diagnosed with eds earlier this year. And they’re custom insoles from like a military doctor because of how messed up my ankles are cause they normally only do those for veterans and not dependents.
How did it take this long for me to be diagnosed?!?!?
I’ve been unable to get the insoles I have been using for years and went with a “recommended brand”.
Of course I spent a whole month trying to keep my knee in place before it occured to me that the new insoles were not doing their job.
Anyway, I now recommend PCSsole Heavy Duty Arch supports for over pronation, because I can walk again.
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!
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
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…..
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)
HAHAHHAHAHAHAHA
*falls asleep in stats class hunched over my desk, with four missing assignments due to doctors appointments, falling asleep and missing notes*
Saw a sign at my high school saying: “ Don’t quit when you’re tired, quit when you’re finished.” Hahahahahaha, not all of us have that luxury
Hey can anyone who has heds tell me if binders or corsets help with back pain? I’ve been having horrible back pain more frequently recently and I don’t have a way to ask my doctor for recommendations because I don’t have access to chat with him.
Please I’m in so much pain
oh god, absolutely constantly. it's always have you tried yoga, and i have to say "well, justvlike the first sixty times you asked, yes i have, and no, it didn't cure me. that's not how it works." im a lazy ingrate for having to take bed days, and im giving in to my weakness for using a cane. it's the most insulting, invalidating, hurtful bullshit ever. and when it comes from family it's so much more painful because they should be able to see how much you struggle to do the things they constantly recommend
is anyone else with chronic and mental illness constantly lectured by everyone in their life about what they need to be doing to "improve" their life?
I'm just so tired of it. Every doctor, every family member, even my in laws now I'm just constantly told what I need to do better and reminded how I'm not good enough/not doing enough
im not a doctor, im just also a mess of shitty cartilage, and this is my experience, so like, dont quote me or anything lol
neoprene knee braces and ankle brace work pretty well, but i can never sleep in them, its just very uncomfortable, it gets really sweaty and kind sore. ive not yet tried elbow/shoulder/wrist braces, but i imagine its a similar experience. they do limit joint movement to an extent, but that means it can also be hard to go about your business. i think id recommend full on braces for liek, exercising, and particularly wobbly days. on better days, flex tape works pretty well
hope this helps!
dumb question but do those joint braces keep your joints in place and could i use them for subluxations