Discover and read the best of Twitter Threads about #spoonie

Most recents (24)

Need to have a quick talk about those posts going around shaming people for being silent during all this (thread)
But just case anyone is new here, big fucking #blacklivesmatter & #fucktrump. If that doesn't float your boat I've got bad news about the rest of my content mates
Since the protests started I've seen people saying remember who stayed silent. Wtf mates. Do you know how easy performance activism is? How many people passed this random public shame criteria just by retweeting a donation link then sitting back & patting themselves on the back?
Not everyone is/can be fighting on the front lines & shaming people bcs they're not using their platform/bodies how you think they should be used when you have no idea what activism they're doing, or what state of mental/physical capacity they're in, is not what we need right now
Read 9 tweets
My #migraine was wrongly diagnosed as a mental disorder by a questionnaire widely used in primary care. Migraine is a progressive brain disease. Accurate diagnosis & effective treatment are essential.

Thread: psychologizing #illness & #pain
PHQ assesses 15 symptoms: pain in head, chest, stomach, back, limbs/joints; pain with menstruation or sex; dizziness; heart pounding; fainting; shortness of breath; upper & lower GI distress; low energy; insomnia. qxmd.com/calculate/calc…
.
The Patient Heath Questionnaire-15 & the Somatic Symptom Scale (SSS-8, pictured) are used to diagnose people with a newly conceived mental illness known as "somatic symptom disorder": the "expression of mental phenomena as physical (somatic) symptoms" (Merck).
Read 17 tweets
Okay, #MedTwitter, esp those based in Michigan, I need your advice. An auto worker contacted me bc their employer wants them back to work on the factory line. The only problem? They have chronic conditions that leave them VERY vulnerable. Their PCP won't write a note. What now?
More context: They have diabetes, high blood pressure, and an autoimmune disorder (colitis), and this factory is not able to practice real social distancing in reality. It would be wildly unsafe for them to return to work, but their doc seems to think they're making excuses.
Also if any #Spoonie folks have advice, I'm sure some of you are already grappling with this too!
Read 4 tweets
It’s World FND month!

We’re also about to experience a global pandemic unprecedented in our lifetimes!

So why should you care about Functional Neurological Disorder?

👇👀
This thread isn’t meant to take away from the current focus on COVID-19. It’s an extremely dangerous development and it’s of course right that we take it seriously and prioritize it as we’re doing. 👍
But if you have room for something that looks grim at first but turns out to be an opportunity for positive change...

You might want to check this out.
Read 30 tweets
I really wish I knew how to explain to people that I’m not being difficult when I say things like

“I have no idea if I can do that thing because I don’t know until I wake up that day whether my body will cooperate.”

(#MySpoons thread.)
I’m really lucky.

When I make permanent friends? I make outstanding friends.

Truly I have great people around

... can’t imagine what it must be like to have the people who are supposed to love you?

Be difficult about an aspect of your daily life.
My friends were not difficult today.

At all. I just wish I knew how to handle these things better.

I thought I would’ve had more practice by now.
Read 31 tweets
School's closed? Work cancelled or working from home? Quarantined or in isolation b/c of #coronavirus? Don't know what to do w/all the extra time?

#Spoonies & #unchangeables got you covered. We're experts on how to handle boredom & isolation.

A thread.
Fellow Spoonies, Unchangeables, #chronically ill peeps, feel free to chime in.

What to do with all this time?

Catch up on your fave shows on Netflix or start a new one.

No Netflix or Hulu? The following have free movies: Vudu, Crackle, Tubi, & Roku. Chime in if I missed some.
Books! If you like reading, download the Kindle app if you don't have a tablet. Amazon has Kindle Unlimited, a book subscription for $9.99/mo.

If you can't afford this, they always have free books. Or you can join an advance reader club on Facebook. Free books for reviews.
Read 24 tweets
.@MedPageToday Your 3/1 illustration about #opioid tapering is so offensive I won't retweet it. #ChronicPain, not the medicine that relieves it, is the ball & chain millions drag behind us. I direct @headsUPmigraine. I know people who died after being forced off safe med. /thread
Shame on you for perpetuating the stigma & misinformation that's ruining & even ending people's lives. "When #pain meds are taken the right way, #addiction is very rare." #opioids #cpp #spoonie cancer.org/content/dam/ca…
#CDC's Guidelines put the rate of non-problematic use of rx #opioids at average 96.97% w/ 3.03% including non-addictive "dependence." Brat 2018 reviewed 1+ million post-op patients & found rate of 99.4% unremarkable use; 0.6% included patients who refilled, @MedPageToday.
Read 9 tweets
Here's my latest* update to my vetted collection of Twitter Disability and Chronic Illness hashtags. Please share it!

Thank you :-) Graffiti background. Foreground in black letters on a  white background to the left reads “Twitter Disability and Chronic Illness Hashtags”<br />
This collection is current as of 01.30.20, previous Twitter update 09.11.19.

There's a PDF version coming up this weekend, to be posted to my Kofi profile. I'll add the link toward the end when it goes up, after the questions, where you can also sign up for email updates.
This version has added

- community suggestions,
- mental health hashtags,
- Medical crowdfunding hashtags,
- and a section for cancer-related hashtags.
Read 84 tweets
.@nytimes Ginia Bellafante wrote an essay to say she didn't need post-surgery #opioids, so she didn't take them. That's not news. #Pain patients are being forced off effective, FDA-approved meds, causing #suicide & unnecessary #disability, & OD rates still climb. That's the news.
CDC, FDA, HHS say no one should be forced off #opioids, yet rising # of doctors have practice-wide bans & @nytimes has 1st pg piece by someone who wasn't affected in the LEAST by any of this? People are DYING from untreated #pain & ODs because restricting Rx meds helps no one.
.@nytimes: Bellafante had a CHOICE. She didn't need #opioids, so she didn't take them. I know people who are DEAD & DISABLED because their doctors dumped them off meds they were taking safely for years on the grounds that the same med might harm someone else. That's unacceptable.
Read 8 tweets
Here’s my latest update to the list of Twitter #Disability & #ChronicIllness Hashtags.

- previous update 02.24.19 -

Please share it! Thank you. :-)

@ImageAltText Graffiti background. Foreground in white letters on a  red background to the left reads “Twitter Disability and Chronic Illness Hashtags”
There will be a PDF version up for download on my Ko-fi, likely tomorrow morning. The link is at the end.
Hashtags For Personal Narratives.

These hashtags are for sharing your stories & experiences. Also good for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 58 tweets
My name is Chrysty and this is Sherlock, my medical alert dog. We want to share with you why we choose @TulsiGabbard for president. #WhyTulsi

I belong to a military family and I have waited at home while my loved ones have been deployed to the Middle East too many times!(1/10)
Do you realize that later this year people who were born after 9/11 will put their lives on the line in a war that started before they were born? Tulsi pledges to put an end to regime change wars! She is a combat veteran herself and proud of her service since 9/11.She knows(2/10)
about this war!

Her commitment to prosperity through peace gives us a direction to move toward. One of the things I love the most about Tulsi is her integrity and hope! She is running a positive campaign toward a better future for us and for our children. My nieces and (3/10)
Read 10 tweets
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. 🙏
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
Read 16 tweets
Here's my latest update to my collection of active Twitter #Disability & #ChronicIllness Hashtags - previous update 12.13.18.

Please share it. Thank you! :-) Light blue sand background has the # drawn in the sand to the right. The left side is blank. <br />
<br />
At the bottom of the picture, text reads
Portable PDF version will appear on my Kofi in the next day or so.

Link: ko-fi.com/TinuWrites
HASHTAGS FOR PERSONAL NARRATIVES

These hashtags are for sharing your stories & experiences. Also helpful for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 45 tweets
Just waiting to have enough energy to shower. Which I didn't know was a thing. Or that one may have to choose it over eating.

So just every day #spoonie stuff.
Oh and trying not to scratch out my eyes. Because that's part of my life now I guess.

Which is why I've been picking eating, since I can't seem to take Benadryl with all this other rap without Something Bad happening unless I eat.
Did I mention I hate pills. Or that I have to take a cajillion of them every day.
Read 4 tweets
Decided on my project for #BlackHistoryMonth 2019. Reads: Black History Month in large block letters with a colored inside and a hollow outside. Black is red inside, Hustory is green inside. Both words are in the foreground. Month is in the background. The graphic is transparent.
Once a week I'll write briefly about up to 7 historical/famous figures in the Diaspora who

- had/have #ChronicIllness
- spoke of the possibility of being in #DiagnosticLimbo
- or were considered #Disabled.
Why once a week and not every day?

I'm a #Spoonie dammit. I have no clue what day or time I'll have energy.

But I can commit to weekly.

The whole thing is for you to see that we're everywhere. For you to SEE us.

So let's get it.
Read 15 tweets
My holiday spoons are fickle. #MySpoons
Yesterday - the day after I ran out of my pain meds - I pulled a muscle behind my boob.

Thank goodness #spoonie Twitter was here to rescue me.
But now I get to spend Christmas

- in more pain than usual
- with more #painsomnia
- and less medication & other methods of easing the pain
Read 12 tweets
Here's my lastest update Twitter #Disability & #ChronicIllness Hashtags - previous update 10.17.18

Please share it.
I'll have a PDF version of this for download on my Ko-fi by this time tomorrow. Link at the end.
HASHTAGS FOR PERSONAL NARRATIVES

These hashtags are for sharing your stories & experiences. Also good for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 29 tweets
I was going to do this hours ago. Then I thought about stories from my life and I was overwhelmed.

Also I hate to being up problems without talking a little about solutions.
So toward the end I'll talk about some things I've tried to fight back with varying levels of success.
Read 56 tweets
A5. From decades of activism through my other identities & my cultural background, it’s easier for me to see how everything is related.

Illnesses that are portrayed in media anywhere in the ballpark of properly get attention & research.
#MedTraumaChat
A5. There’s so much silence around #cancer that we only see one small sliver on tv.

And that one small sliver tends to correspond to the outsider view people have.
#MedTraumaChat
A5. Invisible disabilities have almost zero visibility. And when we tell the stories ourselves & via insiders like with @jenbrea in #Unrest we get accurate narratives that illuminate.

#MedTraumaChat
Read 7 tweets
starting the day with drugs is not as fun as it sounds #chronicpain
strong cannabis cookie, 1/2 soma, 600 mg ibuprofen, 1/2 a joint, heating pad, and now we wait. #migrainemorning #backpain #walkinglikeagnoll
a whole nother joint and several hours later, i can move and managed a shower! now to eat breakfast and then probably rest again. I've got schoolwork to do, laundry and dishes piling up... i will do what i can do today #spoonie #chronicillness
Read 12 tweets
Updating Twitter disability hashtag thread.

@AllisonR has educated me that I should use Sentence Case for #Accessibility. Graphic reads: # symbol followed by the word Hashtag in white lettering on a blue background.
I have #brainfog so I know I missed someone. Please add your favorite resources as a reply.
Do you want to share your disability experience with others? Try these hashtags.

Amplifying stories

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 16 tweets
I know I have real depression. I know this.

Damn if coffee doesn’t help me more than hurt. #myspoons
I wonder if getting out of the habit of drinking coffee was a daft choice as a #spoonie with multiple fatigue conditions.
Once my body let me get out of bed today, I figured, let me get coffee while I'm up. And wow.

It didn't fix everything (I’m definitely depressed and need a therapist) but damned if I'm not actually getting things done for the first time in 3 weeks.
Read 6 tweets
#Disability twitter, #medtwitter , let us have a discussion about patients discussing #MedicalTrauma on here. A Thread:
#chronicillness #ChronicPain #Chroniclife #MedTraumaChat #Spoonie
2) Last night, a fellow advocate posted a very handy guide for HCPs & patients abt treating patients who are trauma survivors: Trauma Informed Care - Disclosures and Care Transitions healthasahumanright.wordpress.com/2018/08/23/tra… #medtwitter #Disability #chronicillness #medtraumachat #spoonie
3) It's a good resource for both #patients & HCPs, please read it if you have a moment.
This led to a helpful discussion about #MedicalTrauma between an HPC and the person who wrote this guide, who has had experiences with this,
#Disability #medtwitter #chronicillness #Spoonie
Read 13 tweets
I signed this petition. I never sign online petitions. But #Afflicted cannot be allowed to stand. chn.ge/2LcFWGj via @Change
Documentaries are meant to give a view of a subject or topic on a FACTUAL basis. Their opinion isn't supposed to be centered unless the subject is themselves.
#Afflicted is heavily slanted toward the erroneous assumption that the chronically ill patients are

faking,

have psychological illnesses rather than physical diseases,

or somehow in denial.

And I ask you- to what end?
Read 13 tweets

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