Discover and read the best of Twitter Threads about #Spoonies

Most recents (21)

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
I met friends here too. @Aoiferocksitout, my rock and one of the sweetest, nicest people I ever met.
@alexhaagaard one of my mentors
@painandcats_ who has this great way of putting frustrations I can't even name into words.
@DawnMGibson, who teaches me so much
#spooniechat
#spooniechat
I also find out other friends are #spoonies or otherwise #disabled through activities online and here.
If I wasn't part of the online community I wouldn't know about
@DisVisibility & her amazing work
@mikes_recovery & changing media perceptions
@Imani_Barbarin who shows me how to be bold when I think I'm inadequate...

I'm getting tired but there's almost 100 others. #spooniechat
Read 3 tweets
@Delta Don't treat me like cargo.

In fact, cargo is treated better than I have been. In my last 3 flights, at least once at every stop, I have been overlooked by wheelchair assistance. At least once at every stop I have had to request a wheelchair attendant more than once.
At least once at every stop I have had to combine the luck of having a delta employee in shouting distance with that employee not being busy with other things in order to be able to move about the gate, whether to get food, drink water, or use the restroom. It is dehumanizing.
At least with my bags, I can find out where my bag is, looking in the app. With your accessibility services, I have gotten used to the cadence of how employees call for a wheelchair attendant, because it has to happen multiple times.
Read 18 tweets
It took How Great Thou Art, Formation & Sorry to get back out of bed.

Pray for me.
Nothing you want to hear more at the doctor's office than no room to sit down and wait for the doctor.
That was maybe my best urgent care appointment ever. They're giving me a shot for my pain. #ChronicPain
Read 6 tweets

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