So excited to see that The Barbellion Prize is returning soon after a hiatus, I’ve missed it! This UK prize shines alight on talented disabled and chronically ill writers and I’ve discovered some great books through it #bookstodon #writing #Publishing #BarbellionPrize #disability #ChronicIllness @bookstodon @disability
https://www.thebarbellionprize.com
chronicillness
Artist: alleyralkyrie
#mentalhealth #chronicillness #chronicallyill #autoimmune #depression #bpd #autism #friendship
You forget your pills one evening. You feel normal going to bed. But then you have the most intense dream of your life. You wake up shaken, not knowing where you are or WHO you are, or what the hell is happening. You have a horrible headache that lasts all day. Your arms jerk out constantly. Your body is prone to violent shakes. You feel your nervous system vibrating. And you can't just take the pills as then you overdose.
On top of the #ChronicPain that is still there
![[a guy being prayed over by a woman - he has bandages on his head and his arm in a sling]
You tried to de do too much! washing α cup and putting the bin out, what were you thinking?](/proxy/post_attachment/856729/cd9409e963.jpg "[a guy being prayed over by a woman - he has bandages on his head and his arm in a sling]
You tried to de do too much! washing α cup and putting the bin out, what were you thinking?")
Trump is adding a 100% tariff to branded pharmaceuticals made outside the US.
This move could be devastating to the disability community.
It will likely drive costs up and create more supply chain issues at a time when we’re already seeing unprecedented medication shortages
Online event hosted by #MEAction
Discussion and Q&A with Brian Buckbee, author of We Should All Be Birds.
Wednesday, October 1st
3 pm Eastern/noon Pacific
More details here:
https://www.meaction.net/event-details/q-a-with-author-brian-buckbee
You must register in advance in order to get the Zoom link for the event.
When I was 21…I was told I was likely infertile and that pregnancy could and probably would kill me. I was denied a tubal ligation and/or hysterectomy because I “might meet a man who wants kids”.
It was a horrifying look at how deep misogyny runs in medicine - and how little women are trusted to know their own bodies and make decisions for their health.
I eventually had the hysterectomy- but only once it became an emergency because I was bleeding to death and they couldn’t stop it. The surgery was more traumatizing and dangerous because I wasn’t afforded the time to adequately prep.
I’m grateful to have survived - and sharing my story in the hopes it helps other women feel less alone. I hope it challenges doctors and healthcare workers to think differently about how they treat women and realize that not ALL of us can become mothers (and not all of us WANT to either).
At the end of the day - a man wouldn’t have had these issues if he wanted a vasectomy. He would have been trusted to know his body. He wouldn’t have been treated like an incubator and I sincerely doubt many men are asked whether they’ve considered that they could meet their “dream woman” and she might be angry about their sterility.
There’s no stigma about the childless cat man.
https://www.disabledginger.com/p/pregnancy-will-likely-kill-you-but
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #chronicillness #keepmasksinhealthcare #endometriosis #abortion #womenshealth #reproductiverights #gynecology #misogyny #infertility #childlesscatlady #bodilyautonomy
I just had my first doctor tell me to ‘take off your mask so I can see your pretty face.’
I was there for an issue with my FEET. There was absolutely no reason for me to remove my mask.
I don’t know how much of this was misogyny and how much was related to pandemic politics (ie perhaps this doctor resents having to mask)… but I was incredibly uncomfortable with his remark.
I declined - as politely as humanly possible - and the whole tone of the appointment changed. I didn’t even get a diagnosis - I was told that the issue on my ankles was ‘not as ugly as I think’ ( I didn’t think it WAS ugly) and sent on my way.
I waited 18 months for this appointment - and the ‘issue’ is likely related to my vEDS and possibly severe. Multiple other doctors have expressed concern but said I had to wait for a specialist.
When patients are treated this way - it causes harm. It causes a distrust of the medical system. I can’t just ‘get a second opinion’ when the first one took 18 months.
When I’m less angry I may write an article about this - because patients (especially female presenting) deal with this crap FAR too often.
In the meantime - this experience underscores why we must always have an advocate with us in healthcare settings. It shouldn’t be this way - but it is.
My article on how to be the best possible advocate for a disabled patient: https://www.disabledginger.com/p/how-to-be-an-effective-advocate-for
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #bullying #CleanAirClassrooms
Dr Oz says being healthy is a patriotic duty
Worse, he says they spend 70% of Medicare & Medicaid funds on chronic illness & aren’t “getting their money’s worth”
This is the quiet part said out loud.
They don’t want to cure chronic illness, they want us to take the blame.
They don’t want to pay.
They aren’t even being subtle anymore. They’re making lists of people with autism. They deride those who can’t work or serve in the military.
“Wise decisions” would be universal healthcare. Universal basic income. Addressing poverty, food deserts and income inequality.
This isn’t “wise decisions”, it’s eugenics.
#rfkjr #uspoli #fascism #eugenics #disability #ableism #chronicillness
🧵 "Two Households, Both Alike in Indignity: An Interview with Anne Ursu"
https://lithub.com/two-households-both-alike-in-indignity-an-interview-with-anne-ursu/
Anne Ursu is the author of Not Quite a Ghost, a middle grade novel about "an eleven-year-old, Violet, who comes down with a post-viral illness"
I'll post a few quotes in the replies.
1/n
@mecfs @longcovid
#MEcfs #PwME #LongCovid #PwLC #ChronicIllness #PostCovid #PostViral #MedEd
Folks with chronic health issues, I can't stress enough how much a good sun hoodie has helped me with handling summer
They're marketed toward outdoor athletes, and most of us with chronic illness are pretty outside that circle so you may have missed their awesomeness!
Here's a good video on comparisons between hoodies. I have two, one REI brand that seems to work well, and a Taema from Arcteryx that works a bit better.
(1/2)
Edited 77d ago