Discover and read the best of Twitter Threads about #spoonie

Most recents (24)

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 🧵.

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.

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...

Read 19 tweets
Thread: Here is what makes me tick.

The issue is both political and personal. I survived a series of events over several decades and am now in a position to offer insights to others. The same healing process is directly relevant to world politics, too.

The above YouTube link is to the start of a 14 video playlist on the channel of the highly experienced Texan psychotherapist Les Carter, PhD.


The market has really taken off in recent years for therapists and others offering guidance through YouTube on surviving the behavior of narcissists.

There are many I'd recommend but Dr Carter is the one I most value at the moment.
Read 19 tweets
Very quick thread on #FreeJimStewartson @jimstewartson

(I added his username in anticipation of a positive result from his appeal below. Also FW @radicalizedpod please & subscribe to their podcast. It's brilliant, as is Jim.)

I am sick to death of having to beg Twitter to reinstate accounts that are actually on the good side, ie law abiding people volunteering their time and throwing everything they have at the dire emergency caused by far right fascism throughout the GOP.
#FreeJimStewartson is one of the pro-democracy activists I first started reading on my journey out of the "maga" mvt culminating on 1/6/21, almost one year ago today.

His evidence & arguments are among the best I've seen. H/t @rickyx2001 @gal_suburban @davetroy for pic:
Read 14 tweets
I'm so dissapointed in the doc who has been my best PCP for years #NEISvoid #DisabilityTwitter #EhlersDanlosSyndrome I have cci and it got significantly worse the last 2 months. I've tried to deal with it myself, but its been a major issue for pain, mobility & neuro symptoms #eds
that nothing helps. we changed from a pain patch to an injection because it give me more relief, but my symptoms persist & cause serious limitations i didn't have before. my PCP told me I had to do PT to get scans. I said okay, because this has happened before. I need 6 weeks
to get scans, which is a lot. my 1st pt was terrible [and I posted about it earlier] and my next pt is somebody I've never been with, so idk if they know eds. the only PT who I know, like, and who knows eds is booked through December. I called insurance to ask about getting scans
Read 16 tweets
Telling someone with chronic illness to work on their stress to help them heal gives me anxiety. Yes, less stress can help, but anxiety is not the cause it is the symptom. Those living in chronic illness & pain don't need the added stress of unsolicited advice #spoonie
You know who else told me my anxiety was the cause of my illnesses? My doctors since I was 18, 20 years now, have sent me away claiming my mental health was the cause. Turns out I have a genetic condition, Elhers Danlos Syndrome, and it was never just in my head. #spoonie
I told my Rheumatologist I thought I had EDS and she said, "who told you that?" Pinched the skin on my hand said, "you don't have that", & proceeds to test me for lupus. (FYI, that's not how you test for EDS) #spoonie
Read 10 tweets
disability is when you have a permanent or temporary condition that negatively impacts how you interact with your environment. it can be acquired or congenital- and dynamic, stable, or progressive in presentation. there are many models of disability: mainly the social and medical
I am disabled due to a chronic illness & also due to the cumulative impacts of 15 different mental and physical conditions. between undiagnosed adhd & asd, and official eds, neuropathy, pinched nerve, costochondritis, asthma, lung damage, rib slipping, crps, migraines, headaches
some of my conditions are stable in presentation, many are dynamic, and eds is both progressive & dynamic. I labeled myself as only a #spoonie until I needed a wheelchair, lots of medical care, accessibility accomodations, and a caretaker. then I accepted the label of disabled
Read 4 tweets
#SpoonieChat do you say you are chronically ill, disabled, or both? why? whats the difference? to me chronic illness is any chronic health condition. it doesnt have to cause discomfort or interfere with your life #NEISvoid #DisabilityTwitter #chronicpain #chronicillness #spoonie
disability is when you have a permanent or temporary condition that negatively impacts how you interact with your environment. it can be acquired or congenital- and dynamic, stable, or progressive in presentation. there are many models of disability: mainly the social and medical
I am disabled due to a chronic illness & also due to the cumulative impacts of 15 different mental and physical conditions. between undiagnosed adhd & asd, and official eds, neuropathy, pinched nerve, costochondritis, asthma, lung damage, rib slipping, crps, migraines, headaches
Read 6 tweets
Getting my biologic: a thread. Buckle up, it’s a long one, with the backstory for context. #spoonie #healthcare #autoimmunedisease #RheumTwitter #rheumatology #spooniechat #invisiblepain #chronicillnessawareness #autoimmune
I have a condition called ankylosing spondylitis (AS), which is an autoimmune inflammatory arthritis that mainly affects the spine, but can spread to other joints as well. In other words, my body thinks that my joints are the enemy… my immune system attacks them, causing inflammation and pain. This sounds bad, and it is, but what’s worse is over time this inflammation can erode your joints.
Read 78 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
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

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