Discover and read the best of Twitter Threads about #spoonie

Most recents (24)

.@TwitterA11y, people with disabilities need things to be accessible on BOTH ends.

The fact that the #AltText process is not easier on the writer’s end can make it difficult for #spoonie peeps & those with #cfsme to make posts that are accessible for the #VisuallyImpaired.
I know others are working on it, but with all of the algorithms out there, it should be possible to make viewable *predicted* text of what’s in a picture, so we can quickly approve it, or make edits.

That wouldn’t just “make life easier.” It’s about #accessibility & #autonomy.
#Disabled autonomy is more important than than many abled ppl realize.

So many things in our lives are based on the assumption that we “have someone to help us,” simply bc systems are falling short. It’s #ableist, & forces us to rely on others. We may not HAVE others available.
Read 5 tweets
Drs: "I don't know what's wrong with you."

Education: 4 yrs college, 4 yrs med school, 3-7 yrs residency, & passing a licensing exam

Me: It's celiac disease (insert 3 other dx's)

Process: Months of research, tests & a NP

Note: I've been right more than Drs have.

Chronic illness and disabled patients know that we help ourselves and each other bc Drs can't or won't.

Our community is filled with stories like this. I'm not an anomaly. This is the norm.

#chronicillness #disabled #DisabilityTwitter
And, if you're a Dr reading this, instead of getting angry or defensive, try actually listening to us for once in your career. You might learn something.

Until you and the medical community changes, we'll never trust you.
Read 4 tweets
CW: GET/ Eating/ #MECFS misinformation

I saw an image today talking about things people with #chronicillness want to hear. The list included “I googled your condition.” I almost shared bc I do appreciate when people want to learn but cringed dt misinformation. Then...
I googled my condition. Surprisingly, the first set of info that popped up was not complete but didn’t necessarily contain wrong information. So I clicked on the articles...The one from India caught my eye. “What is #Chronicfatiguesyndrome & Effective Ways to Deal with It” Oh boy
1)Fix your sleep/ get more sleep 2) take vitamin D 3)Eat Better &4) Exercise. This is a new article @timesofindia PLEASE educate yourselves/ staff & the local Doctors. Your take is outdated and HARMFUL. Here is a resource in support of my statements…
Read 5 tweets
#chronicillness brain is weird. A thread.
Brain: For months I’ve had horrible daily sx. I get a day of lower symptoms & go for 2 short 5 minute walks. My legs hurt from exercise! (Sad but also this pain is mostly muscle workout pain!) but my other sx seem low this very second!
Clearly... this MUST mean I’m getting better!

Body: *Ahem* 1) you walked less than most people do on the way to their office. 2) you’re forgetting about the near #migraine from a Dr. appointment 3) you’re forgetting the #tachycardia from putting your scooter in the car.
4) oh and today when you had the high BP standing up that dropped back to low w/in seconds and you felt it!? 5) You used a scooter today 6) left knee is outshining your right as far as pain and on fire, 7) you’re
wired and tied and up at 10pm tweeting because you can’t sleep.
Read 6 tweets
As I was musing to @BattenbrgBarbie recently, I suspect there are a bunch of overlaps in the social experience — along with some v important differences, esp around differential inflections along axes of power/oppression — in various experiences of being #NonNormativelyEmbodied:
e.g. (in no particular order & v incompletely): Fat, #ActuallyAutistic+prone to #SensoryOverload, Deaf, in/visibly #disabled, in #ChronicPain or experiencing #chronicillness-rel’d #fatigue, racialised, trans, v tall or vshort (even without being a little person), #hypermobile...
I was thinking about how many of the #hypermobility/#EDS-related specificities of providing competent & safe care to me (even when the EDS isn’t DIRECTLY contributing to the current clinical picture)...
Read 8 tweets
#Opioid tapering is "extremely difficult" for people w/ #ChronicPain, "not only in those w/ problematic opioid use."

Kurita: Worsened pain &/or function led more than half of those studied to stop scheduled dose reduction of 10% or 20% per week. /thread…
1b/ Kurita: Altho 40 of 75 didn't complete the taper, researchers found "improvements after opioid treatment stabilization was achieved," suggesting stabilization (whether at a dose or at 0 dose) is a preferable goal to forcing everyone off rx #opioids.

Stopping can be fatal.
2/ Glanz: "Attempts to adhere to prescribing guidelines may lead patients to be exposed to variability in #opioid dosing." Dose variability of 30% or more increases the risk of overdose more than 300%.

Glanz et al. JAMA Network Open. 2019;2(4):e192613.…
Read 16 tweets
I accidentally ran out of my prescription for pain pills. I am in pain. So I did #WhatDisabledPeopleDo and opened the drawer in my house where I keep all the expired, unused, doesn't-really-work pills. Now I am on a different pill that expired in 2017 and guess what, it's working
Maybe it just needed a few years to age like a fine wine?
And if anyone's thinking, "How do you accidentally run out of your prescription?" Well, Norman, I've been distracted by art and while I wish I could just dial-the-prescription-in, I can't b/c of Your War On Opiates. So instead I have to have this conversation every couple months:
Read 17 tweets
I’m an autistic person with #dyscalculia.

So, while I very much *feel* #SpoonTheory in my being, it all falls apart when trying to use it as a metaphor with others (or as an accommodation strategy for myself). I constantly miscount and lose them.

I’m a #Spoonie without spoons.
When speaking, or in meetings, I’m often asked by folks to explain spoon theory. I usually just turn to someone I trust and ask “Could you explain it?”

For myself, I’ve learned to just make myself stop, slow down, or turn down requests when needed — and to be ok with that.
I mean, I’m a huge supporter of spoon theory as a metaphor to explain things to others and as an accomodation peoole can use themselves. It just all gets tangled and anxiety-inducing for me.

I love to laugh at that, though. You kind of gotta.
Read 5 tweets
WARNING: I'm furious, and what follows is likely to reflect that.
I unfortunately use @elicahealth via @DHCS_CA . Their previous psychiatry provider prescribed me a schedule II medication. However, like literally every single provider I've had through @elicahealth, that provider later left the clinic. I was provided no notice of this. Nor was I
Given notice when the previous 6 providers I had been seeing departed. Some providers left @elicahealth so abruptly that I only had time to see them once before they simply vanished.

There has been no continuity of care after any of these unceremonious departures. Each time
Read 21 tweets
2019 study in the AMA journal reports that reducing access to rx #opioids has "failed" to reduce overdoses.

OD crisis is projected to become "substantially worse" if public policy continues to wrongly target medical use. (thread)…
Chen et al (JAMA 2019): Analyses of programs designed to reduce overdoses by reducing the medical use of #opioids "have failed to demonstrate a consistent benefit on fatal or nonfatal opioid overdoses."… Image
JAMA> #OD rates are projected to soar 149% above 2015's crisis levels by 2025. Overdose deaths from 2016-25 could reach as high as 1.21 million if the crisis doesn't soon stabilize.

🟡 Continuing prescription restrictions will have a "modest effect, at best" on reducing ODs. Image
Read 13 tweets
2012 column by leading pain expert B Eliot Cole, MD, MPA, warned that "radical changes" proposed by a group calling itself #PROP would deny #opioids "to the majority of patients now receiving them for noncancer pain." / thread…
In the early 2000s, "buoyed by the success of treating cancer-related pain with #opioids, many physicians rose to the challenge of doing more for their patients suffering with #ChronicPain," Cole wrote.
"This led to an increase in the number of prescriptions for #opioids, which had the unintended consequence of more opioids ending up in medicine cabinets in more homes, ultimately giving more people (🚩not patients) access to these valuable medications for nonmedical purposes."
Read 21 tweets
.@NitaGhei & I direct @headsUPmigraine. We'd like to hear from anyone forced to stop rx #opioids after April 2019. Tell us how quickly you were forced off. Let us know what state you're in & whether you're a #vet seen at the #VA, too. We're writing a paper for use in activism.
#Pain experts called for urgent action against forced tapering in March 2018. @US_FDA warned doctors against rapid or sudden rx #opioid discontinuation in April 2019.…
Read 3 tweets
.@canada_pain @NitaGhei & I direct @headsUPmigraine. I think your report is the most successful thing I've seen patient advocates do in response to rx limits. I would love to know more. I've been home w/ daily migraine for 15 yrs, so I work REALLY slowly. No rush in reply needed!
I've been a p/t Canadian since '03, but my advocacy is focused in the States. Nita & I are both academics & we're writing a paper to ground our advocacy in peer-reviewed research. I think we need stats to answer stats, since saying "This policy is killing people" hasn't worked.
What survey platform did you use? Did it cost you a lot of loonies? Did you use the same 1 for your Covid & CP surveys? If we did a US CP survey, could we use yours as a basis? We would credit you, of course, & direct any press or legislative attention we got to your work too.
Read 5 tweets
A Google Scholar search for papers about Pain Catastrophizing + #opioids had 2,530 hits since 2018. That's 76.6 times the number of papers in 00-02.

What's "pain catastrophizing"? / thread
The Pain Catastrophizing scale assesses whether people in #chronicpain engage in rumination on &/or magnification of their pain &/or how many feel hopeless.

They claim that "catastrophizing has been associated w/ #opioid craving, long-term opioid use," & misuse.
"Pain catastrophizing has been identified as a risk factor for prescription #opioid misuse in patients with chronic pain generally." Sharifzadeh, Kao, Sturgeon, Rico, Mackey, Darnall (2017). #cpp…
Read 11 tweets
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.…
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
Anyone else dealing with flare ups of chronic pain issues right now? My list of things I use:

- 4-7-8 breathing
- magnesium oil spray
- cryoderm cold spray
- spiky mats (acupressure)
- low impact yoga & stretching
- celery juice

Feel free to share your #spoonie tips.
Supplements that I've found noticeably useful for energy, more restful sleep, and anti-inflammatory purposes:

- Vitamin D
- magnesium + melatonin for sleep
- turmeric
To try and slow my adrenal system down, I've noticed focusing on bodily care can help:

- hair treatments
- face masks
- other facial skincare (scrubs, toners, using a powered facewashing brush)
- bodily skin care like dry brushing, using Epsom salt body washes
- nail care ImageImageImage
Read 6 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
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…
#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
.@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
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…
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
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

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