Discover and read the best of Twitter Threads about #Spoonies

Most recents (24)

I’m going to take a moment to describe an everyday moment in the life of someone living with chronic illness or pain, aka #spoonies.

I don’t want to write this because I still have internalized ableism and the accompanying shame.

Which is why I’m making myself write it.

1/x
I’ve done everything I’ve done so far today in terms of reading, researching, and writing, lying in bed on my right side.

It’s my only pain-free position, and lying down doesn’t trigger my POTS and the autonomic nervous system deregulatory cascade that comes with it.

2/x
POTS is a form of autonomic nervous system dysregulation. It stands for Postural Orthostatic Tachycardia Syndrome.
My heart rate goes from 60 to 140 if I stand up. My blood pressure, however, does not increase. So my heart races but my brain does not get adequate blood flow.

3/x
Read 12 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
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
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
Read 13 tweets
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
Read 10 tweets
This is ridiculous. Lots of #spondylitis patients use skeletal muscle relaxants and opioids for management of rheumatological pain, and we know how to use them safely. This policy will result in #ChronicPain patients turning to MORE opioids b/c other drugs aren’t available.
Same goes for benzodiazepines used for anxiety disorder which often have comorbidity with chronic somatic diseases. (I honestly don’t know about sleep medicines, but sleep disturbance is obviously a common disabling comorbidity, too.)

The issue, always, with opioids is not…
some magic number like ≤ 50 mme/day.

These are useful for semi-acute prescribing (like for a month after chest surgery) as a level where withdrawal symptoms are likely to be manageable even if sudden discontinuation is necessary, but for chronic pain there’s NOTHING special…
Read 12 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
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!
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
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.
Read 8 tweets
I was bitten by a #tick in 2011 & it's turned my worle upside down!
I was a practicing trial atty & am now on a walker.
I contracted E. Chaffeensis, Rickettsia of unknown et., & #Lyme.
I wasn't treated for 11 mos. By then, the tick bacteria had invaded my spinal fluid/brain.
Read 12 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
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)
Read 17 tweets
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.
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.
Read 6 tweets
🚨🚨🚨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…
👉👉👉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
Read 14 tweets
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?
Read 20 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
A frustrating thing about having #fibro and sensory sensitivity is that all of a sudden things people always did that you never noticed?

Now endlessly bother you or affect your health.
And I don’t mean “bother” as in ”that’s annoying” - that would imply the ability to suck it up.
But I literally can’t stand the sound of yelling. But 2 sets of twins under 12 live here.

And 3 of them are boys. I usually wake up to loud yelling or screams.
Read 15 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
Still sick. I made a recording of my voice - keep in mind this is an *improvement* - four days in.
And I had the flu shot. Maybe a week and a half before I got muggle sick.

Let’s talk about #MySpooms and being “muggle sick.”
This is what some of we #spoonies call it when we get viruses 🦠 on top of chronic illnesses.
Read 26 tweets
Diseases like #mcas and #mastocytosis aren't exactly invisible illnesses. Swelling, hives, rashes and big, dark circles under our eyes are pretty visible signs, not to mention the bruises we get from bumping into stuff! 🙄#chronicillness #spoonies #mastcell
Flushing..dermatographism..yep, pretty visible. ☹️
If you watch Summer Caroll's interview you can see her flushing kick in the longer she talks wvua23.com/living-a-night…
Read 3 tweets
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
Read 46 tweets
😆🤣😂I died when @DawnMGibson said that some sleep hygiene tips are muggle advice! #ACR18 #Painsomnia
"Magical beings such as myself don't always do well with that." #ACR18 #SpoonieChat #Facts
I much prefer the idea of a sleep PLAN. You don't hear people talking about our #painsomnia struggle outside of giving the standard advice that doesn't work for is. #ACR18
Read 14 tweets
You #spoonies ever get caught in an "I think I can" spiral?

You rest enough, maybe coming out if a flare, & you think "I'll go downstairs and make my own lunch. Piece of cake."

Then you do it & you realize what a wack decision it was & you're back to square one?
& I keep thinking "why do I keep doing this to myself? Why must I push my limits?"
When really I know. I miss feeling vital. I'm feeling helpless. I used to be able to get certain things to change in my life by sheer focused will.
Read 6 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
It hasn't been that bad since I lived alone. #MySpoons are in low key agony. But sharing is distraction.

& Hopefully this helps someone.
This morning when I woke up, things were already off.

✅I had MENSTRUAL cramps.

✅I still have some flu thing.

✅I overdid it yesterday helping with the kids.

✅My food schedule was off, so

✅My pill schedule was off.

Incoming nightmare amirite?
I thought I was prepared by the amount of pain I'd be in. So I

➡️did the system check,
➡️got up to visit my poreclean throne,
➡️checked the kids were on schedule,
➡️had one warm me a bagel and
➡️got back in bed.
Read 19 tweets

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