explore | Grilled Cheese

@buttahflyk.bsky.social Oct 13, 2026, 5:12 PM

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!
🦋
#ChronicIllness #PatientAdvocate #PatientExperience #SpoonieSky

@buttahflyk.bsky.social Oct 13, 2026, 5:40 AM

{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
🦋
#ChronicIllness #fatigue #ChronicFatigue #SpoonieSky

@buttahflyk.bsky.social Oct 13, 2026, 3:35 AM

Finished before midnight, so it counts!😉

It's so much more than joint pain: Taking a look under the #arthritis umbrella for #WorldArthritisDay
🦋
@ifaiarthritis.bsky.social #arthritis #AiArthritis #ChronicIlIness #fibromyalgia #RA #sarcoidosis #osteoarthritis #SpoonieSky

@buttahflyk.bsky.social Oct 12, 2026, 6:34 PM

Sometimes, there really is the perfect shirt for the occasion.
🦋
#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

@buttahflyk.bsky.social Oct 9, 2026, 3:54 PM

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.
🦋
sarcoidosisnews.com/columns/crit...
#PatientExperience #sarcoidosis #SpoonieSky

@buttahflyk.bsky.social Oct 6, 2026, 12:25 AM

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...
🦋
#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

@buttahflyk.bsky.social Oct 3, 2026, 11:41 PM

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
🦋
#AiArthritis #arthritis #autoimmune #ChronicIllness #ChronicPain #endometriosis #fibromyalgia #migraine #RA #sarcoidosis #SpoonieSky

@buttahflyk.bsky.social Oct 2, 2026, 2:02 PM

... messaging can come across as insensitive or hurtful to patients, and how pharma and industry leaders can do better.
🦋
#AWNY26 #ChronicIllness #PatientAdvocacy #PatientVoice #SpoonieSky
newyork2026.advertisingweek.com/aw/schedule/...

@buttahflyk.bsky.social Oct 1, 2026, 2:02 PM

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

@celestialfishy.bsky.social Sep 19, 2026, 1:57 PM

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

@buttahflyk.bsky.social Sep 19, 2026, 4:20 AM

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...

@celestialfishy.bsky.social Sep 14, 2026, 7:12 PM

I always get really depressed when my birthday closes in... not sure why.

#chronicillness #chronicpain #depression #anxiety #spoonie #spooniesky

@buttahflyk.bsky.social Sep 11, 2026, 12:10 AM

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