#SpoonieSky
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buttahflyk.bsky.social
Updated for November!

There's always something happening for the #ChronicIllness community. Here, you'll find info about upcoming #webinars, #podcasts, #support groups, and more.
🦋
floatlikeabuttahfly.blogspot.com/p/whats-happ...
#arthritis #disability #RareDisease #sarcoidosis #SpoonieSky
Bitmoji of me pointing to a monthly calendar full of patient org logos. Text reads, "What's on this month's Chronic Calendar?"
November 1, 2026 at 3:03 PM
buttahflyk.bsky.social
A few years ago, I wrote a column about how living with a #ChronicIllness like #sarcoidosis can be scarier than anything we face for #Halloween. I thought this was a good time to bring it out again!
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sarcoidosisnews.com/columns/livi...
#diagnosis #RareDisease #SideEffects #treatment #SpoonieSky
FLaB background with Bitmoji of me dressed as a witch. Text reads: Previously on Sarcoidosis News a bionews community Living with sarcoidosis can be scarier than any Halloween horror Revisit the column on Sarcoidosis News bit.ly/halloweensarc
October 31, 2026 at 4:04 PM
amweald.com
Guess who's formatting (and also reading so I don't get spoiled as I format) Sabina Nordqvist's next novel? 💖
Guess who finds it relatable af 😌🥄
#SpoonieSky #BookSky 💙📚
October 17, 2026 at 4:53 PM
softgritspoonie.bsky.social
#chronicillness #spoonie #spooniesky #fibromyalgia #ButYouDontLookSick
October 13, 2026 at 12:04 AM
buttahflyk.bsky.social
I am not a "sickfluencer." The term makes me cringe, and the recent article made me fume. I'm looking forward to joining this conversation, and we'd love to hear your thoughts.
*Stay tuned for a column about this next week, too!
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#ChronicIllness #PatientAdvocate #PatientExperience #SpoonieSky
ifaiarthritis.bsky.social ifaiarthritis.bsky.social @ifaiarthritis.bsky.social · 21d
Sickfluencer or patient advocate?

We're bringing 3 chronic illness creators together on the AiArthritis 360 Podcast to discuss the debate!

💬 What makes you trust a creator? What concerns you?

Share your thoughts to help shape our episode! 👇

#AiArthritis #PatientAdvocacy
October 13, 2026 at 5:12 PM
buttahflyk.bsky.social
{Alt text: white text on black background:

in english we say "i'm tired"

but in poetry we say:

i have been
holding up
entire skies
with hand
that were only
ever meant
to hold flowers

-sophia bray
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#ChronicIllness #fatigue #ChronicFatigue #SpoonieSky
October 13, 2026 at 5:40 AM
mosscaller.bsky.social
One thing that the pandemic proved was that the work of many jobs can be done from home. It was a good lesson that is unfortunately being rolled back.

#disabledsky #disabilitysky #chronicallyil #spooniesky
( ID: I'LL DIE ON THIS HILL: Chronically ill people deserve careers that accommodate their bodies—not bodies that are forced to accommodate impossible careers. )
October 12, 2026 at 6:19 PM
buttahflyk.bsky.social
Sometimes, there really is the perfect shirt for the occasion.
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#ChronicIllness #ChronicPain #PainManagement #SpoonieSky #WorldArthritisDay
FLaB background with photo of me at Pain Management office. Includes a zoom-in of my shirt, a stick figure with "OW!" repeated, with arrows pointing to the head and every joint and limb
October 12, 2026 at 6:34 PM
buttahflyk.bsky.social
Finished before midnight, so it counts!😉

It's so much more than joint pain: Taking a look under the #arthritis umbrella for #WorldArthritisDay
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@ifaiarthritis.bsky.social #arthritis #AiArthritis #ChronicIlIness #fibromyalgia #RA #sarcoidosis #osteoarthritis #SpoonieSky
So much more than joint pain
Taking a look under the arthritis umbrella
buttahflyk.substack.com
October 13, 2026 at 3:35 AM
buttahflyk.bsky.social
Many people with #ChronicIllness have a long list of #medications that keep us going. #TalkAboutPrescriptions Month (who knew that was a thing?) is a great reminder of why we should be talking about them all year long.
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sarcoidosisnews.com/columns/crit...
#PatientExperience #sarcoidosis #SpoonieSky
Critical conversations: Why talking about our medications is essential
It can feel tedious to have frequent conversations about medications, writes columnist Kerry Wong, but it's a critical part of healthcare.
sarcoidosisnews.com
October 9, 2026 at 3:54 PM
buttahflyk.bsky.social
Real Patients™ is looking for people with a variety of health conditions.

Share your experience with researchers working to imprоvе treatments, products, and care. Get compensated for your time.

To apply, visit:
apply.savvy.coop/speakers-bur...
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#ChronicIllness #PatientExperience #SpoonieSky
FLaB background w/ promo for Real Patients: Savvy Cooperative is now Real Patients™ Real Patients™ is looking for people who have experience with a variety of health conditions and are willing to speak about their experiences. Your voice can change healthcare. Share your experience with researchers working to improve treatments, products, and care. Get compensated for your time. Details • Real Patients often works with our partners to help bring the patient voice to a variety of conferences (both virtual and in-person). If you are interested in being a speaker for us in the future, please fill out the screener. When we have an opportunity for participation, we will reach out to you. Purpose • To informally chat with conference attendees to give them real patient insights Compensation • Varies For more information and to apply for this gig, visit: share.realpatients.com/speakers-bureau?ref-kerryd91d60dd
October 6, 2026 at 12:25 AM
softgritspoonie.bsky.social
#spoonie #spooniesky #spoontheory #TheSpoonTheory
Six spoons with the text Here are a few extra spoons, in case you need them. Borrowed from some "Normie" that won't even miss them.
October 3, 2026 at 4:07 PM
buttahflyk.bsky.social
How would you describe your pain? Comment below!

And check out the full conversation with @Leila P.L. Valete, CHES & Deb Constien at aiarthritis.org/talkshow-ep125
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#AiArthritis #arthritis #autoimmune #ChronicIllness #ChronicPain #endometriosis #fibromyalgia #migraine #RA #sarcoidosis #SpoonieSky
ifaiarthritis.bsky.social ifaiarthritis.bsky.social @ifaiarthritis.bsky.social · Sep 30
For many of us with chronic pain, 1–10 doesn't tell the whole story. Sometimes an image, color, sound, or word says more.
For #PainAwarenessMonth: How would you describe your pain without using a number?
October 3, 2026 at 11:41 PM
buttahflyk.bsky.social
... messaging can come across as insensitive or hurtful to patients, and how pharma and industry leaders can do better.
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#AWNY26 #ChronicIllness #PatientAdvocacy #PatientVoice #SpoonieSky
newyork2026.advertisingweek.com/aw/schedule/...
Words Matter: How to Communicate with Humanity in a Regulated, AI World
As marketers we understand that the words we choose to use are important. This is particularly true in healthcare marketing, where audiences are sensitive and communication is critical. Advertising…
newyork2026.advertisingweek.com
October 2, 2026 at 2:02 PM
buttahflyk.bsky.social
Updated for October!
There's always something happening for the #ChronicIllness community. Here, you'll find info about upcoming #webinars, ongoing series, #support groups, and more.
🦋
floatlikeabuttahfly.blogspot.com/p/whats-happ...
#arthritis #disability #RareDisease #sarcoidosis #SpoonieSky
Bitmoji of me showing a monthly calendar filled with organization logos. Text above reads "What's on this month's Chronic Calendar?" Includes Float Like a Buttahfly logo
October 1, 2026 at 2:02 PM
softgritspoonie.bsky.social
#spoontheory #TheSpoonTheory #spoonie #spooniesky
September 30, 2026 at 12:28 AM
softgritspoonie.bsky.social
#spoonie #spooniesky #spoontheory #TheSpoonTheory #spooniecommunity
I am a Spoonie. I am strong, fearless, a fighter a warrior a pincushion a doctor with no diploma. I am a pill popping ice bag wearing heating pad sharing and loving, smiling through tears hard-working not giving up coffee in my cup socializing people surprising Mesmerizing he ins big hearted never departed handling special time spending body fighting Spoonie What’s your superpower??
September 24, 2026 at 5:12 PM
celestialfishy.bsky.social
Some years back my mom got this random 3D printed Lucky Cat and so i finally decided to paint it. Unfortunately because i have shaky and unstable hands now it has alot of mess to it's painting but still cute. #art #3Dprint #disabled #spooniesky #spoonie #painting #luckycat #moneycat
The small 3D printed lucky cat i painted sitting in my hands. I covered it in white so it looked a bit cleaner then the white 3D print plastic then defined the eyes, whiskers, mouth, and paws with black, pink nose/inner ears, purple collar, gold sparkly bell, and the coin in front of it is covered in gold leaf with green lettering. The cute little money cat print sitting in a box of pennies
September 19, 2026 at 1:57 PM
buttahflyk.bsky.social
I've added a new page to my site!

There's always something happening for the #Chronicillness community. Here, you'll find info about upcoming #webinars, #podcasts, #support groups, and more.
🦋
#arthritis #sarcoidosis #PatientEducation #SpoonieSky
floatlikeabuttahfly.blogspot.com/p/whats-happ...
Events
floatlikeabuttahfly.blogspot.com
September 19, 2026 at 4:20 AM
celestialfishy.bsky.social
I always get really depressed when my birthday closes in... not sure why.

#chronicillness #chronicpain #depression #anxiety #spoonie #spooniesky
September 14, 2026 at 7:12 PM
softgritspoonie.bsky.social
Good morning! ☀️

remember to eat something, stay hydrated and take any and all necessary meds today.

#spoonie #medsky #spooniesky #chronicillness #BreakfastCrew #invisibleillness
September 14, 2026 at 3:04 PM
buttahflyk.bsky.social
To those living with #ChronicIllness:
What's the worst health/life advice you've been given?
(ex: "Just push through the pain" - we know that'll only make things worse)

*Answers may be included in my next #Sarcoidosis News column
🦋
#autoimmune #ChronicPain #disability #fatigue #SpoonieSky
September 11, 2026 at 12:10 AM
softgritspoonie.bsky.social
#spoonie #TheSpoonTheory #spooniesky
September 7, 2026 at 11:08 PM
softgritspoonie.bsky.social
A day in the day of a Spoonie:

1) prepare for the thing
2) do the thing
3) recover from the thing

#spooniesky
August 23, 2026 at 5:42 PM
buttahflyk.bsky.social
When life gives you lemons ...

In this week's Sarcoidosis News column, I share what it's like when you can't drink the lemonade.
🦋
#accessibility #ADA #disability #arthritis #fibromyalgia #sarcoidosis #ChronicIllness #SpoonieSky

sarcoidosisnews.com/columns/inac...
In an inaccessible world, sometimes you can’t make lemonade
Living with mobility challenges in an inaccessible world means that, sometimes, the best option still isn't great, says columnist Kerry Wong.
sarcoidosisnews.com
August 21, 2026 at 6:57 PM