Discover and read the best of Twitter Threads about #Spoonies
Most recents (14)
For those who may be/may have been wondering why I confronted that toxic misogynist gamer Homie via quote tweets the other day (y'know, the one who needed proof of male gamers being toxic to women gamers while being toxic to a woman gamer), here's a 🧵.
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For one thing, if nobody ever calls out people who bully others, those people never change. What's worse, they go on to influence *other* people who maybe start parroting the behavior. Perhaps children, which is the worst instance.
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The first misogynist tweet he made to me, I reported; it came back almost instantaneously as "not in violation" (Twitter's words, not mine). I wanted to give Homie enough shoelaces to trip himself up so that any further reports on him were OBVIOUSLY bad...
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1/🧵 I think Chris Rock wouldn't have made a joke about Jada's illness if more folks were educated about the high prevalence of autoimmune & other chronic disorders.
#chronicillness #Spoonies #autoimmune #Alopecia #women #health #ChronicPain #chronic #illness #SickNotWeak
#chronicillness #Spoonies #autoimmune #Alopecia #women #health #ChronicPain #chronic #illness #SickNotWeak
2/ As a woman who lives with multiple immune-related disorders, when a comedian makes a joke about chronic illness, I feel unseen...not just for me, but for all my fellow #chronicfolks. Does Chris Rock have any idea what Jada goes through to live with alopecia? Probably not.
3/ As a country, we need to create more dialogue around chronic illness, and especially autoimmune diseases. They are so prevalent yet they are usually talked about in whispers....'Oh, she has Crohn's.' Cancer used to be spoken about in hushed words, too.
Telling a sick or disabled person "oh but you don't look sick" is actually really crappy and hurtful, even if you mean it as a compliment.
Let's talk about the reasons why.
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Let's talk about the reasons why.
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First of all, some background. Not every illness or disability is visible.
Some flare intermittently, some are never visible. Sometimes people are in incredible pain but don't show it because they're used to it, or just don't want to talk about it with you.
Lots of options.
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Some flare intermittently, some are never visible. Sometimes people are in incredible pain but don't show it because they're used to it, or just don't want to talk about it with you.
Lots of options.
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Autoimmune disorders, autonomic nerve disorders, digestive disorders... tons of conditions are only visible on the inside. And not everyone's going to show you the proof, because more often than not it's none of your business.
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Mon premier thread sera sur l'oversharing.
On va mettre les choses au clair direct: J'exècre le terme « #oversharing ».
Quand je partage de mes maladies physiques et mentales, je #visibilise l'existence de mes semblables. Je rappelle que nous existons.
On va mettre les choses au clair direct: J'exècre le terme « #oversharing ».
Quand je partage de mes maladies physiques et mentales, je #visibilise l'existence de mes semblables. Je rappelle que nous existons.
Du coup, ce thread est une dédicace à tout·e·s mes buddies #spoonies et #neuroatypiques.
Et un peu de pédagogie pour vous, nos ami·e·s et proches neurotypiques et valides. Parce qu'on vous aime.
Et un peu de pédagogie pour vous, nos ami·e·s et proches neurotypiques et valides. Parce qu'on vous aime.
Déjà, je propose de remplacer « oversharing » par « conscience sharing ». Ou de simplement utiliser le mot « partage ». Parce que c'est plutôt de ça dont il s'agit.
watch Myth 12: Alternatives to pain medicine are safe and effective via @YouTube Myth it is! As a practicing physician of 4 decades i will not treat anyone in pain with a second line rx because PROP/CDC is afraid of first line opiate pain medications.
Watch Myth 11: Addiction and Dependency are the same thing via @YouTube big misconception! adds millions to the fake numbers. There is less than 1% opiate addicted people now and back to the 1920’s. Rare now & rare then. Where are the new CDC addicts?
Watch Myth #10 PALLIATIVE CARE via @YouTube 1st page unauthorized cdc guidelines and many state laws EXEMPT DOSE LIMITS for palliative care. So let’s DO IT. Protects doctors too exceeding the Brandeis/CDC dangerous dose limits for their Z51.5 patients
watch Myth 9: Milligram phobia "this is way too much" via @YouTube I can legally prescribe any dose high, low for standard FDA opiates knowing proper dosing & care will not kill anyone or turn anyone into a dope fiend, the greatest irrational fear of all
watch Myth 8: Overprescribing via @YouTube We are discussing the made up crime that’s not a crime “overprescribing “as viewers wanted more details , which JATH researchers are providing. Coming up in #9 -Milligram phobia
watch MYTH 7 SYSTEMIC INFLAMMATORY DISEASE it not in your head! via @YouTube
I have a brain tumor/IIH & such severe intestinal damage that I can't digest food w/out enteral food RX.
It's $198/mo even w/a pharma scholarship.
My now 77-year-old mom is my caregiver & she can't afford it.
We get $64/mo for food + trying to save home. Please help!
It's $198/mo even w/a pharma scholarship.
My now 77-year-old mom is my caregiver & she can't afford it.
We get $64/mo for food + trying to save home. Please help!
In 2011, I was bitten by a tick. I contracted E. Chaffeensis, Rickettsia, & Lyme. I wasn't treated for 11 mos. The bacteria went to my spinal cord/brain.
Please help us 💔
#Lyme #IBD #Fibromyalgia #Spoonies
Please help us 💔
#Lyme #IBD #Fibromyalgia #Spoonies
During 1 of my numerous hospitalizations, I caught Vanc-resistant C. Difficile for 3.5 yrs & had to have 2 FM transplants.
I can't digest/ absorb food w/out EnteraGam.
It's norm. $1600/mo but I get a pharma discount, making it $198/mo. My 77-year-old mom still can't afford it.
I can't digest/ absorb food w/out EnteraGam.
It's norm. $1600/mo but I get a pharma discount, making it $198/mo. My 77-year-old mom still can't afford it.
76 yr old Mom needs help gofundme.com/76-yr-old-mom-…
Please help us! 😭
Can't afford next mos.' RX @$198/mo necessary to digest/absorb food.
My now 77-year-old Mom is my caregiver. We get $64/mo for food (long gone) + trying to save home.
#Lyme #SaveOurCare
#Fibromyalgia
#IBD
Even $5 or $10 will help + RTs are free. 🙏
Can't afford next mos.' RX @$198/mo necessary to digest/absorb food.
My now 77-year-old Mom is my caregiver. We get $64/mo for food (long gone) + trying to save home.
#Lyme #SaveOurCare
#Fibromyalgia
#IBD
Even $5 or $10 will help + RTs are free. 🙏
I was bitten by a #tick in 2011 & it utterly destroyed my life.
I contracted E. Chaffeensis, Rickettsia, & what was later found to be #Lyme.
I wasn't treated for 11 mos. By then, the bacteria had invaded my spinal cord + brain.
#LymeDisease #healthcare #tick #foodstamps
I contracted E. Chaffeensis, Rickettsia, & what was later found to be #Lyme.
I wasn't treated for 11 mos. By then, the bacteria had invaded my spinal cord + brain.
#LymeDisease #healthcare #tick #foodstamps
76 yr old Mom needs help gofundme.com/76-yr-old-mom-…
Please help us! 💔
I was a practicing trial atty when I was bitten by a tick. I contracted E. Chaffeensis, Rickettsia, & what was later determined to be #Lyme.
I also contacted Coxsackie B4 virus-a cousin of polio. I wasn't treated for 11 mos. I have lost most use of my left side (I'm left- handed)
I also contacted Coxsackie B4 virus-a cousin of polio. I wasn't treated for 11 mos. I have lost most use of my left side (I'm left- handed)
76 yr old Mom needs help gofundme.com/76-yr-old-mom-…
I waa bitten by a tick in 2011 & not treated for 11 mos.
Went to the Mayo Clinic-found Coxsackie B4 virus (a cousin of polio) which left me w/out most use of L side (L handed 😪).
I caught Vanc-resistant C. Difficile, had 2 FM transplants & need RX @$198/mo just to digest food.
Went to the Mayo Clinic-found Coxsackie B4 virus (a cousin of polio) which left me w/out most use of L side (L handed 😪).
I caught Vanc-resistant C. Difficile, had 2 FM transplants & need RX @$198/mo just to digest food.
Drs back in Louisville eventually discovered tick bacteria (E. Chaffeensis, Rickettsia of unknown etiology, & #Lyme-Dxd 1 yr later). All went to spinal fluid & brain.
Have had 8 spinal taps.
3.5 yr C. Diff/2 FM transplants left me unable to digest food w/out enteral RX @$198/mo.
Have had 8 spinal taps.
3.5 yr C. Diff/2 FM transplants left me unable to digest food w/out enteral RX @$198/mo.
🚨🚨🚨ATTENTION #Spoonies #ChronicPain community, people have been asking for the recent clarifications from the @CDCgov and the @US_FDA to take to their #Doctors, so I have created a pinned tweet with everything. #Opioids 🚨🚨🚨
👉👉👉The @CDCgov clarification appears in an article in @NEJM here nejm.org/doi/full/10.10…
👉👉👉with an accompanying press release: cdc.gov/media/releases…
👉👉👉with an accompanying press release: cdc.gov/media/releases…
👉👉👉A quick way to see most of the article, a separate letter issued by the CDC Director @CDCDirector and the @US_FDA warning is to go here: …lthprofessionalsforpatientsinpain.org
76 yr old Mom needs help gofundme.com/76-yr-old-mom-…
Please take a moment & read our story. 💔
NEWS!
I just found out that I will be getting $514/mo for SSI but that has to go towards our home & bills/food.
I still need help w/$198/mo RX.
Also received notice that foodstamps will be CUT to $15/MONTH! 😭
Who could possibly eat on 50 cents a day or survive on $17.13/day?
I just found out that I will be getting $514/mo for SSI but that has to go towards our home & bills/food.
I still need help w/$198/mo RX.
Also received notice that foodstamps will be CUT to $15/MONTH! 😭
Who could possibly eat on 50 cents a day or survive on $17.13/day?
I’ve been amplifying the #DoctorsAreDickHeads hashtag the last few days but haven’t actually shared my own story. It starts there, traverses through #DoctorIRespect and #DoctorsAreAwesome and ends with #DoctorsAreHuman (something for everyone!)
And of course it is not the entire profession, but the profession has a major systemic problem when it comes to disabled patients and those with #chronicillness that it seems to have little to no knowledge or self-awareness of. THAT – not the hashtag – is the problem #medtwitter
#MedTwitter, your patients have been trying FOR YEARS to speak out on hashtags like #spoonies #pwd #medtrauma and no one has listened (on this platform) at this scale until patients got....confrontational #DoctorsAreDickheads
