when will doctors realize that denying chronic pain patients pain management can literally kill us?
Apparently Iām ātoo youngā to have chronic pain. Thank you so much doctor, why didnāt I think of that?!
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@geometricmentality
when will doctors realize that denying chronic pain patients pain management can literally kill us?
Apparently Iām ātoo youngā to have chronic pain. Thank you so much doctor, why didnāt I think of that?!

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i follow somebody on tiktok who is on a ventilator, has a G tube, J tube, ostomy, port, and stays alive via those and 24/7 infusions. she is at an ICU level of care, at home.
and medical professionals STILL routinely dismiss her symptoms as anxiety.
she said she felt like someone was sitting on her chest and she couldn't breathe - despite the ventilator. they said it was anxiety, until they found all the infected blood clots in her lungs.
i am telling you this because i was both horrified and validated to learn that there is literally absolutely no degree of sick you can be that can prevent doctors from dismissing it as anxiety.
i know how hard it can be to believe in your own experiences and to advocate for yourself, especially if you're not used to how often doctors are dangerously incorrect, or if you have experienced their gaslighting.
but if you feel that something is wrong with your body, you are the one who knows best.
disability advocacy went wrong when it became about inspiration porn andĀ ādifferently abledā and savants. its incredible that that guy with no legs did a triathlon but your sister with no legs will not and she doesnt need prosthetics or five hour training days to deserve respect and compassion and accommodations. its incredible that that autistic guy can look at a city from a helicopter for an hour and then draw the entire detailed skyline from memory when he lands but your autistic friend cannot and they dont need to have a special Autism Power to deserve respect and compassion and accommodations.Ā
activism framed aroundĀ āwe are just as CAPABLEā means that when people genuinely are less capable they are left behind. activism framed aroundĀ āwe are just as WORTHYā is fundamental to radical compassion.
Ok seriously what is medicalcore and now what is traumacore
Is it like hospitalglam because I'm okay with that because it's a bunch of actually sick and disabled people acting goofy or sexy at our own appointments or hospital admissions or with their own mobility and medical devices, but if it's a bunch of ableds doing a hospital aesthetic I'm going to be mad. Same with traumacore
So Iām disabled and I do it to make myself feel better, but yes Iām 99.9999999% sure that itās ableds on their bullshit again.
Verbal communication is not the only form of communication. Thereās AAC apps, writing, typing, sign language, etc.
And just because a person doesnāt communicate verbally doesnāt mean that theyāre not capable of advocating for themself or making their own decisions.
Itās ableist and dangerous to assume otherwise.

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a tragedy
I cant vocal stim and eat lunch at the same time
Relationships don't fix illnesses
Happy parents don't fix illnesses
New presents don't fix illnesses
New hair cuts or clothes etc. don't fix illnesses
Distractions don't fix illnesses
Closeness in faith doesn't fix illnesses
Do they sometimes help us mentally to give us hope, or something to cling to while we go through it?
Usually yes (depends on the person)
But it won't fix us.
I can't stand up straight right now and moving comes with involuntary gasps of pain. I need to get in the bathtub but I'm alone and I'm not confident I could make it back to my bed. My pain meds and mmj are barely touching the pain. I wish I could just force my body to do what I need it to do so I could feel better more quickly.
I need to be more prepared next time. I've been thinking of putting together an "emergency flare bag" that is always ready for me when I'm flaring. Filled with self heating heat packs, single use tiny tooth brushes, floss, water bottles, snacks, a filled pill box, pain patches, a pain journal, comfy but easily removed clothes, etc.
Because I'm not always at home when things go wrong with my body, and even when I am I usually don't have everything in one place where I need it.
If you have any ideas for items to include please let me know!
I donāt know if you use a mobility aid, but getting a fold up cane might help. They have some at cvs and most Walmartās. But if youāve never used a cane be careful because it can hurt your wrist. You could keep it in your bag and grab it when you start to flare.
tbh iād absolutely prefer to live in a world where assistive devices are so common and taken for granted that people who literally donāt have any medical need to use them at all can just use them if they feel like it. instead of this bullshit artificial scarcity situation where we donāt let people get the mobility devices they need because Fuck You

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god forbid i become dependent on the mobility aid i'm already dependent on. i will become addicted if i use it every day. mobility aids are so addictive.
Hey I ordered some mobility/disability aids so I thought Iād share. Image ids are with explanations.
Image Id: all of these images are in the white amazon order list with green text for the name. End.
Shoe inserts that have good arch support
Id: light purple shoe inserts with a very thick heel. The bottoms of them are visible, theyāre black with grips. End.
Hiking sticks. These arenāt meant as mobility aids but Iāve been wanting forearm crutches and these are much cheaper. Hopefully theyāll work for me. They have wrist straps so I wonāt drop them (that happens a lot.)
Id: A pair of pink and black hiking sticks with these accessories next to them: storage bag; stickers to change the color; a variety of tips for different terrains. End.
Wrist braces with a thumb brace! Finally I found a brace that should keep my thumbs in place. I have brachydactyly which is a joint deformity. Basically Iām missing half of my thumb joints, and that happens to be the part that would keep them in socket. Fun. /s.
Id: A white hand held in a loose fist. Thereās a thick wrist brace that wraps up around the hand and thumb. A small number ā2ā is visible in the bottom right corner. End.
Ankle braces that have side supports! Again, joint deformity. I was thinking of getting fitted for afos but those are expensive and insurance probably wonāt cover them.
Id: A white foot with the heel lifted slightly. Thereās a thick sleeve around the ankle and the middle of the foot. Plastic and steel bars are on either side, held on by an extra strap. End.
New ear defenders. I have no clue where mine went and itās been hell without them. Especially bathroom hand dryers.
Id: A pair of black and white headphones, with another pair in a box behind them. Theyāre folded up. End.
And lastly, a knee brace that actually looks like itāll help. Notice a trend here? None of the braces I have give proper support, mainly because the medical field doesnāt care about hypermobility. My other option is custom, but that would literally be over a thousand dollars US.
Id: A gray and black knee brace with the inner sleeve next to it, the package it comes in in the background. The brace has an open kneecap and multiple straps, it also has a side support. End.
So Iām probably not the first person to use hiking sticks as mobility aids but I might be the first person to blog about it. So maybe thisāll help someone.
Ok wow I havenāt posted on here in forever. Um Iām back but I honestly donāt know if Iāll post that much. Just thought Iād give a little update so you know Iām not dead. Anyway things that I want to share
I came out as a trans guy and Iām going to my first psychiatrist appointment today. Also hoping to get an autism diagnosis but thatās not top priority. My health is ok I guess. Through physical therapy Iām able to walk (at least right now) but Iāve been having some mystery kidney issue. We donāt know whatās wrong and Iāve already seen a specialist. So I guess I just have to wait till this gets bad enough. My family has been ok during all this but mental health stuff has effected everyone. I (knock on wood) havenāt had covid but my grandpa did. Heās fine now he had a pretty mild case luckily. We did lose my great grandma (his mom) because of covid but she also had stage four lung cancer so it was her time anyway. One of my cats also passed as well as my grandmas dog and thatās been really hard to deal with. My cat was very sudden, he was only 7.
I want to start hrt but it might negatively impact my kidneys and liver so I might not be able to. My mom doesnāt understand but frankly I donāt care. My special interest is still my hero and the anime merch collection keeps growing (itās becoming a problem). Iāve also found a store that let me set up a stand to sell my art so weāll see how that goes. I made a tiktok that I donāt really want to share but uh Iāve been getting harassed by trumpets so thats fun.
Anyway yeah I just thought Iād let everyone know Iām doing ok. Most of the people I was friends with on here havenāt posted in like 6 months so thatās sad :(.
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me, listening to the same song for the 62nd time: this is everything i have ever needed to exist. this is it i do not need food or water or any other stimulation, just this song but loudr jUSt tHIS
I get scared sometimes to listen to new music because Iām so used to new sounds being unpleasant. Seriously how do you just??? Enjoy?? It???

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itās pretty much common knowledge on twitter but i donāt know if theyāre widespread anywhere else? they might be, who knows, but i wanna make an informational post anyway
tone indicators!!!!
a tone indicator is a little addition to the end of a sentence, post, etc. that confirms the tone you typed it in! itās REALLY helpful for neurodivergent people like me because in my own personal experience itās hard for me to tell what people are exactly trying to say sometimes, especially over text. the main tone indicators i see people use are:
/j (joke)
/hj (half joking)
/lh (lighthearted)
/s (sarcasm)
/g or /gen (genuine)
/p (platonic)
/srs (serious)
/lyr (lyrics)
/c (copypasta)
/q (quote)
here are some examples:
iām pissed off /srs
i love you!!! /p
wow way to go /s
iāve been insensitive, iām sorry /gen
so on and so forth!!! spread the word :)
letās talk about the sarcasm switch aka /s
adding /s to the end of a statement is used in many online communities to denote sarcasm
this is useful to people who have trouble reading the tone of a statement without verbal indicators
this especially helps include neurodiverse folksĀ in the conversation!Ā
this type of slang is based on HTML syntax, and thereās more:
/sĀ -Ā sarcastic
/jĀ -Ā joking
/srsĀ -Ā serious
/hjĀ -Ā half joking
and more besides! like emojis, html tone indicators provide important context & clarification to written communication. you can include a wider audience by using them, and autistic readers like me will really appreciate it!
if you already use tone indicators, which are your favorites?