I love all things frog, mushroom, rainbow high… I have Ehlers danlos syndrome and use both a rollator and a cane. Enby that is bad at making friends but likes to have them. I adore many cartoons but haven’t seen even more.
197 posts
Latest Posts by sonny-ray-of-goth - Page 3
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
So I only got diagnosed last week right? I’ve been in pain for years but I never had a name for it that explained the extreme it would go to.
Well today I was walking around with some of my friends getting ready for the show we are putting on and I open the door for them and right after they walk in my hip shoots pain and I hit the deck, unable to get up because of pain.
I don’t know wtf happened, but my hip has hurt ever since regardless of position, sitting, standing, laying
So the prop department is lending me a cane, but can anyone tell me what could possibly have happened?
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
Not the asshole, that mama was out of line.
I’m sorry. I just. I just love farting stepdad so much 😭 Like use what you have available to you.
I was looking into break rooms (those places that give u a bat and let u smash stuff) and this line got me
I had a doctors appointment today and for the first time ever she gave me the review sheet instead of my mom. And I was looking over the review of systems. And the doctor didn’t ask me about any of them. But she denied allllllll of them. Despite my previous claims of cold intolerance, joint pain, muscle weakness ( I was wearing on if my braces for goodness sakes), fatigue and just general other symptoms I have that she KNOWS about. Denied all of them. Oh! And apparently I’ve progressed so far into hashimotos that I now have Hypothyroidism. And she didn’t mention that either. Was a wonderful day /src
I was having such a good morning.
I was volunteering at my favorite place to volunteer, cheering people on at a 1k and 5k for the holidays (for the holidays) and I was on my feet for three hours straight and I was okay.
But when they brought the volunteers back to home base, I stepped of them golf cart and my ankle shot pain up my leg.
God dammit.
So now I’m sitting in the ground waiting for my ride and trying not to aggravate my ankle anymore.
I solved my issue of joint pain after baking for about an hour!!! My mom finally let me get ankle braces after I had a very intense pain day. So I wore my ankle braces with my house crocs. I used to just wear crocs so my feet weren’t straight up on the tile, but crocs have zero arch support so my ankles would by over-pronating for over an hour with almost zero relief. But my ankles braces hold my arches up while supporting my ankles as well so they didn’t over-pronate. I for once was not in pain when I was finished baking!!!
Total win!!!
“You’re too young to be in pain!” isn’t the wake up call you think it is. Your words aren’t going to magically make my pain disappear. And if you mean these words in a genuinely sympathetic way, then I urge you to stay away from it still. It can feel invalidating to a lot of us.
Idk if I've posted about this before, but the most important thing I've learned in 2022 (The Year Of Never Ending Doctors' Visits) is to leave every medical appointment with a clear-cut set of next steps. When you have a chronic health issue, it's not just as simple as telling the doctor what's wrong and letting them take it from there.
If you go in for an undiagnosed issue, your should leave with:
An investigative plan: Orders for labs, imaging, or specialist referrals to try and figure out what's causing the problem. If your doctor doesn't want to order tests, ask why. It could be an insurance issue (e.g. tests denied unless front line treatments have failed), or it could be a bias issue. If it's a bias issue, things get more complicated, but the first step towards adequate care is asking your doctor to note that you requested testing for the issue and they denied it on the basis of [whatever]. I have some tips for next steps in these situations, so feel free to shoot me a message.
A "what-if" follow up plan: Ask your doctor, "What if the labs/scans/etc. come back negative or inconclusive? What if this treatment plan is not effective after [preestablished length of time]? What's the next step?" and make sure the next steps are noted. This helps keep you on your doctors' radar until you have an effective care plan in place.
A symptom management plan: Really spell out the effect the symptoms are having on your daily life. Let the doctor know you're fully invested in long term recovery, but that you need something to help you live your life as "normally" as possible until the long term treatment plan can be established and take effect. This could be medication, assistive devices, FMLA or other documentation for work/school, etc.
If you go in for a diagnosed issue, swap out the investigative plan for a long-term treatment plan. The goal should be to reduce your symptoms or prevent progression, if possible. For some conditions, this looks pretty similar to symptom management.
This has been working pretty well for me lately. At the end of my appointments, I verbally summarize my understanding, like "Okay, so we're trying to figure out the cause of my [symptom], and you've ordered XYZ tests. If nothing comes back abnormal, you'll [order different tests, refer to specialist, etc.]. In the meantime, I can manage it with [medication, lifestyle change(s), adaptive device, etc.]. Is that a good summary of our plan?"
Rinse & repeat at any/all follow up visits.
hate hate hate it when adults tell younger people they're "too young to experience (x.)"
pain, memory loss, mobility aids, and disability are not exclusive to older people. young people can be disabled.
im nearly sixteen, and i have a hellish mixture of scoliosis and kyphosis. on top of that, i experience amnesia DAILY. my back doesnt hurt every day, and my brain doesnt refuse to remember important things just for you to say only old people can experience these things.
Saw an extremely good sign on the bus today
with great pain comes the great inability to form a coherent sentence
[ID: a 4-page comic in illuminated manuscript style of a person standing outside. /1: They look to the distance and say: "What is that dolorous cloud: that dreadful fright I see now on the dark horizon?" /2: They turn, upset, and say: "Alas! It is the brain fog approaching!" A purple cloud enters the panel. /3: They hold up their hands against the approaching cloud, saying: "A curse upon that fog that steals my eloquence. I...hate...it" /4: The cloud surrounds them and they say: "cloud"..."bad" /ID]
• being disabled should not be expensive •
• being mentally i’ll should not be expensive •
Nothing more punk than someone who is in pain all the fucking time and just continues to exist.
Edit: this isn't about random characters. This is about physically disabled people.
This ABSOLUTELY works.
I have used this for many years. Definitely b do it.
Hopefully this tip can really help someone, please take this advice or suggest to friends and family if you feel it could really assist them
it's okay to use things that are typically associated with young children. diapers, bibs, pacifers, sippy cups, velcro shoes, onesies, stuffed animals, toys, etc. there's no shame in finding joy and comfort in these things, or using them as disability and neurodivergence aids. it's your life. it's your happiness. it's your wellbeing. that's all that should matter - not what people who don't have your best interest in mind think.
anytime I talk about my chronic pain and fatigue and the limitations they impose on me, my mom's response is always "well you have to talk to the doctor" like firstly. I do. Secondly, I have an entire life to live between doctors appointments. 20 minutes with my doctor every 3-6 months is not going to suddenly cure me.
Reblog to give the person you reblogged it from the energy to do one (1) chore or maybe many
Hot take but canes are not a limited resource. Most mobility aids aren’t but canes especially. Canes are $20 at a lot of stores like CVS, Walmart, etc. You aren’t taking that resource away from “real” disabled people (hint: you ARE a real disabled person) in fact buying more canes creates more demand and works to make more stores carry them for better prices. You aren’t faking being disabled or hurting disabled people, you’re working to make canes more accessible which is helping disabled people.
Get the cane.
the next person who tries to tell me “you just need to do X to cure your chronic illness!” is going to get beaten to death with a binder of my entire compiled medical history
If a cane helps you even just a tinyyyyy bit, you should still use the cane!
someone with speech difficulties is not "refusing to speak" to piss you off specifically. whether someone is able to speak or not is completely out of their control, and I can promise that you getting annoyed at them (or choosing to ignore their other communication methods) isn't helping
dismantle the idea that you should love your body because "it works". bodies that don't work deserve love too. disabled and chronically ill bodies are just as deserving of love as abled bodies.
Anyone else with chronic pain perpetually curious about what a physically healthy person would do if they suddenly had to deal with your body
Like I'm imagining one of those annoying preppy white girls having to deal with my ankle flare ups (which sometimes feel like my lower legs are getting run over by a train)
It's very amusing and honestly a bit empowering? I mean it makes me feel like an asshole* but I am a strong asshole so HAH
*to be fair that kind of girl is very easy to laugh at especially since they're often horrible to anyone who isn't exactly like them so eh I don't feel too bad about it
Conventional health advice: you shouldn't crack your neck, you'll get arthritis
Doctors: fixing a subluxation quickly is important to prevent damage that can cause osteoarthritis and it can cause a cracking noise
Conventional health advice: you shouldn't chug water
Doctors: when someone chugs water, they activate a bodily response that can help pots patients mitigate their symptoms
Conventional health advice: you should sit still to say attention
Doctors: fidget toys and drawing can help maintain attention for things like classwork
Conventional health advice: Don't do that thing you do to feel better
Doctors: you should do that thing everyone tells you not to do to feel better
Me: hmm. This is a wild but like. Maybe trying to standardize medicine when the human body can't even agree on what it needs to be a person is bad actually. It's even worse when laypeople self-police and police others using this standardized advice for literally everyone without assuming they've tried it already. We shouldn't have to try things that we know won't work because otherwise we wouldn't have started doing the other thing.