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#chronic illness community
calmmyfears 4 months
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hi, if you are struggling with not knowing who to be or what to do with your life this year just like me. i want you to know that it'll be alright, we will figure it out along the way. breathe deep and take my hand, we are going places you've never imagined. the world is waiting for us and we will get there in our own time, slow but steady. one foot in front of the other with kindness and patience in our hearts. we're not lost, we're on our way. 馃
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Denying a patient the right to a diagnosis just bc the disorder you suspect they have doesn鈥檛 have a cure is ableist and abuse of power.
Patients have the right to know what is going on with their body. If you aren鈥檛 prepared to help them, there is an entire community who can provide them with the knowledge & skills you lack (symptom management, clinical trials, latest research, emotional support, list of specialists and treatment options, etc).
The least you can do is give them the diagnosis.
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I follow tons of disability/chronic illness/mental health tags and I keep seeing memes or infographics without alt text or image IDs. This is not okay for content of any subject matter, but its beyond ridiculous for these spaces in particular. You can鈥檛 call yourself an advocate if you are declining to use accessibility tools like this. There are absolutely no excuses, especially with the technologies we have now. Most devices can read and copy the text out of any image, for example.
Basically if it鈥檚 not worth including everyone, it鈥檚 not worth posting. Make it accessible or don鈥檛 post it. Thank you
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moon-blush 1 year
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I'm going through a medical emergency that's putting me out of work till the middle of February at the best, till March at the worst. It's two operations and a surgery.
I'm so stressed about it. I'm not rich, I don't have much savings and what I do have has been put towards my hospital travel/bills that my insurance won't cover.
I've gotta come up with 1,800 for my bills so I can at least keep my apartment, my car, and phone on, otherwise I'll lose both and I just don't know what to do. I know this is a stressful time for everyone and I hate that I have to post this but if you can help with anything, please do. I really need it. I'm practically begging. Please friends, help me if u can, I can't be homeless here at -40 temps on top of recovering.
0/1800
$moonblushy
I also have venmo if that's easier, shoot me a message.
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plushies-and-petrichor 5 months
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delusioncolor 2 years
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馃毃 PLEASE help a disabled autistic system 馃毃
we're in need of. . .
bills (water, gas, electric, etc)
medical license
bulk tylenol + vitamins
clothes in general (we share clothes with our mother mostly because we're similar size but we have only a couple things of our own (other than underwear thankfully))
compression gear
disinfectant wipes
neck pain aids (like accu-pressure foam block and neck pillow)
rollator accessories
sensory friendly lighting
various braces for the body
various ice packs
our current goal is $500. please share this.
p/yp@l: @beesanonymous
c/sh@pp: $queerdisability
ko/fi: @autibility
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my-brain-is-soup 2 years
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matchakuracat 1 day
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has anyone else ever had an xray to see if you have arthritis or anything similar on your hands/feet or anywhere else on your body? i just got one today and i'm really nervous to get the results back (i don't have any idea of how long the wait will be either which certainly doesn't make it better).
i've had chronic joint pain for years which has gotten gradually worse over time, but recently i got these hard bony lumps on my finger joints which made me face my anxiety and go see a doctor for the first time in a while. he did look at my joints but not nearly as throughoutly enough because somehow he didn't even notice anything out of the ordinary, which is very strange since every single other person i've showed has clearly noticed it. some even thought it was broken, but everyone noticed there was something obviously wrong.
even though the doctor strangely didn't see anything wrong, he thankfully still sent a referral to get an xray done but he said that he didn't think they were going to find anything. so that's kind of what made me start to get so anxious about it in the first place (apart from me just being a very anxious person in general).
it would be nice if there was something that could help soothe my anxiety about it a bit but mostly im just curious to see if anyone else has had a similar experience and if so, how it went for you. so if you did and see this, i'd love to hear about it :)
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patchyourbrokenwings 3 months
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Just because you've gotten really good at ignoring the pain doesn't mean the pain has gone away. I know how much it hurts, but please allow yourself to feel (in a way that isn't harmful!). Your body sends you signals and it is important to remain aware of what these can mean. Even if your body has been sick for a long time, if something doesn't feel right it usually is.
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neuroticboyfriend 10 months
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do you think it'd be ethical for me to go to One (1) 5 hour long indoor pride event? as long as I wear a mask (hopefully kn95) and 2 rapid tests beforehand (idk if I can get a PCR before, but I will PCR after)?
i feel like the answer is probably no but... itd help to get input from yall since ik many of you are covid conscious. its also risky for me bc i just got over an infection and i kinda have another chronic infection.. hhh. i want to celebrate too....
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skelebellie 10 months
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how many low spoon days must we endure before we turn to knives
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calmmyfears 4 months
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new year, still chronically ill 馃槾
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A friendly reminder to my chronically ill buddies: READ YOUR RX INSERTS!
I know you鈥檝e been taking that Rx for years but every time you get a new medication or are having weird symptoms please look over your Rx inserts. It鈥檚 so easy to forget super vital pieces of information about a medication after you鈥檝e been taking it. Like maybe your new symptoms are on the side effects list. Maybe you shouldn鈥檛 be taking that medication with food afterall. Maybe you are supposed to be monitoring certain blood tests regularly.
I know you鈥檝e got a lot going on and brain fog on top of it but no body is going to look out for these things except for you 馃
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riotclitshave 5 months
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Please check out the pinned version of my gofundme post and donate and/or share as widely as you can please! I also, now, have the link in my bio. Seriously, any amount you can donate helps, any sharing helps, even across platforms.
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softest-epilogue 2 years
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okay let鈥檚 hope this reaches someone in the chronic illness and disability communities. I鈥檓 looking to get a walker for my POTS and this undiagnosed joint and muscle pain I鈥檝e been dealing with the last few months, and I鈥檓 looking for recommendations.
I鈥檓 plus size, so I鈥檇 prefer one that can hold up to 350lbs or more. and I know they can obviously get pricey, but if there鈥檚 one on the more affordable end, obviously that would be awesome.
so yeah, please let me know if you have any recommendations 馃グ
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