Kerry L. Wong 🦋 Float Like a Buttahfly
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buttahflyk.bsky.social
Kerry L. Wong 🦋 Float Like a Buttahfly
@buttahflyk.bsky.social
490 followers 340 following 440 posts
Writer | Educator | Patient Advocate
bit.ly/floatlikeabuttahfly
🦋 Creator, Editor, illustrator | Kaleidoscope: Rare Disease Stories a.co/d/brVzf0s
🦋 Columnist | Sarcoidosis News
🥄🕊️ #🟦 #BLM #defy🧹#resist #SarcStrong #ZebraStrong🦓 #AlwaysCoordinated😘 she/her
Posts Replies Media Videos
buttahflyk.bsky.social
This. 100% this. Years. Years and years ... and for too many people.
~🦋
#ChronicIllness #RareDisease #SpoonieSky
You ever know that there's something wrong with your health and you keep going back to the doctor with the same issues just to be repeatedly dismissed and then, months or years later, you see a doctor who actually listens and it turns out you were right and now you're stuck wondering why it had to get this bad before someone listened, why it took so long to get answers and how your health could be if you were taken seriously originally.
October 27, 2025 at 10:58 PM
buttahflyk.bsky.social
I can't believe I have to miss this!
Spending the morning at the @afspnational.bsky.social walk, the afternoon at the airport, and the evening on a plane ... but I'm protesting with you all in spirit!

If you are available, PLEASE show up ... and stay safe!
www.nokings.org
~🦋
#NoKings
No Kings logo (crown with x through it) with text that reads: No thrones. No crowns. No kings. Saturday, Oct. 18
October 18, 2025 at 6:52 AM
buttahflyk.bsky.social
Had about a million feelings while watching "Apple Cider Vinegar" on Netflix, the "true story about a lie." How anyone could do that is just...😡😤🤬 So, of course, I had to write about it for this week's #SarcoidosisNews column.
~🦋
#ChronicIllness #SpoonieSky
sarcoidosisnews.com/columns/dram...
FLaB background with screenshot of Sarcoidosis News column. Text reads: Drama series reflects the best, worst of online patient communities Netflix's 'Apple Cider Vinegar' highlights the dangers of trusting the wrong sources by Kerry Wong October 17, 2025
October 17, 2025 at 2:15 PM
buttahflyk.bsky.social
An oldie but a goodie...

Survivor Spirit
Before the book, before the column, before the blog...

*I originally wrote this in 2010. A lot's changed since then, but this was the magic moment that brought about those changes, that helped lead me to where I am now.
~🦋
open.substack.com/pub/buttahfl...
Photo of a hand writing in a notebook, next to a coffee mug with a peace sign . Text reads: Survivor Spirit Before the book, before the column, before the blog... Float Like a Buttahfly
October 16, 2025 at 5:38 PM
buttahflyk.bsky.social
A blast from the past ...
*I wrote this a looooooong time ago, when I started my blog, back around 2010. I’ve had plenty of other metamorphoses since then, but it’s still the best way to explain how I became a Buttahfly.
~🦋
buttahflyk.substack.com/p/why-buttah...?
Cover image from Substack post features a cartoon image of a butterfly with text that reads: Why Buttahfly? About my metamorphosis ... and that spelling! Float Like a Buttahfly
October 14, 2025 at 6:01 PM
buttahflyk.bsky.social
My buttahflies are participating in the Westchester @afspnational.bsky.social Out of the Darkness Walk
- in memory of my grandfather
- in support of all affected by #suicide

Saturday, October 18
Harbor Island Park

Visit bit.ly/AFSPButtahfly to join us or make a donation.
~🦋
#StopSuicide #HOPE
FLaB promo for American Foundation for Suicide Prevention's upcoming Out of the Darkness community walk on Saturday 10/18 at Harbor Island Park Features event details & graphic that reads "together bringing hope to those affected by suicide"
October 7, 2025 at 4:28 PM
buttahflyk.bsky.social
RPV needs YOU!
@rarepatientvoice.bsky.social is looking for patients for a paid opportunity:

🗣 Male patients with #SjogrensSyndrome
⌚ 60-minute in-person interview
💵 $120 compensation

Visit rarepatientvoice.com/Buttahfly to sign up!
~🦋
#ChronicIllness #Sjogrens #SjogrensDisease #SpoonieSky
FLaB promo for this gig. Text reads: Since 2013, Rare Patient Voice has awarded patients and caregivers over $15,000,000! Rare Patient Voice is looking for patients for a PAID opportunity to share their experience WHO Male patients diagnosed with Sjögren's Syndrome WHAT 60-minute in-person interview COMPENSATION $120 Visit rarepatientvoice.com/Buttahfly for details. Float Like a Buttahlly
October 4, 2025 at 2:57 PM
buttahflyk.bsky.social
When planning a #patient conference, it's best to book speakers who can understand and empathize with the #PatientExperience.
IMIDeology gets it.
See this week's #Sarcoidosis News column.
~🦋
lnkd.in/dXxv9-Jb
#autoimmune #arthritis #ChronicIllness #disability #RareDisease #SpoonieSky
#PatientVoice
FLaB background with screenshot of Sarcoidosis News column titled "It's empowering to attend a patient forum where people 'get it'
October 3, 2025 at 3:15 PM
buttahflyk.bsky.social
Hoy Schlit!!
Amazing performance by this rookie!
8 shutout innings
0 walks
12 strikeouts
Is it a little bit sweeter that he's actually from Boston and had to convert his family to Yankee fans?
Yes, yes it is 😉
(they should've given him the chance to finish the game, though)
ALDS, here we come!
~🦋
Photo of Yankees pitcher Cam Schlittler
October 3, 2025 at 2:53 AM
buttahflyk.bsky.social
"We all we got!
We all we need!"

That's not just a great #NewYorkLiberty chant -- it's a #ChronicIllness community anthem!
Read all about it in this week's #Sarcoidosis News column!
~🦋
sarcoidosisnews.com/columns/chro...
#disability #InvisibleIllness #RareDisease #SpoonieSky
FLaB background with screenshot of Sarcoidosis News column: With chronic illnesses like sarcoidosis, community is key
September 27, 2025 at 12:54 AM
buttahflyk.bsky.social
Happy anniversary!
🦋
Bitmoji of me holding a cupcake with a candle. Text above reads "happy anniversary"
September 15, 2025 at 6:22 PM
buttahflyk.bsky.social
Your healthcare story matters!

Savvy Cooperative is looking for people who have been diagnosed with a variety of conditions and their caregivers.

$95 for a 60-minute virtual interview

apply.savvy.coop/awareness-on...
~🦋
#RheumatoidArthritis #Lupus #Scleroderma #Sarcoidosis #Myositis #Sjogrens
FLaB background with info re: Savvy Cooperative-affiliated gig Text reads: Your healthcare story matters. We're listening. Savvy Cooperative is looking for adults (18+) who have been diagnosed with a variety of conditions and their caregivers Rheumatoid Arthritis (RA) Lupus Systemic Scleroderma (SSc) Sarcoidosis Myositis Sjögren's Syndrome Details 60-minute virtual interview Purpose To seek patient insights from individuals living with these conditions and their caregivers Compensation $95/hour Visit pply.savvy.coop/awareness-on-avariety-of-conditionsref=kerryd91d60dd for details.
September 13, 2025 at 2:11 PM
buttahflyk.bsky.social
Just 2 more days!
Bridging Autoimmunity: Patient Forum
9/13 | Dobbs Ferry, NY

Free to join virtually or use code FRIENDS15 for 15% off in-person registration.

Learn more & register: IMIDeology.com/autoimmunepatientforum
~🦋
#autoimmune #ChronicIllness #PatientEngagement #PatientVoice #SpoonieSky
September 11, 2025 at 9:25 PM
buttahflyk.bsky.social
I was looking forward to attending, but now, I'm excited to join the #patient panel!

Bridging #Autoimmunity: #PatientForum
Restore Balance, Reclaim Wellness: Educational Retreat for #Autoimmune Healing
September 13 | Mercy University
Virtual attendance is FREE
~🦋
#ChronicIllness #SpoonieSky
Flyer for Bridging Autoimmunity: Patient Summit Mercy University (Dobbs Ferry, NY) September 13, 2025 Tickes & info at imideology.com
August 28, 2025 at 4:25 PM
buttahflyk.bsky.social
Bitmoji cartoon of me on a pink dinosaur, surrounded by hearts & text that reads "sending good vibes!"
August 26, 2025 at 8:37 PM
buttahflyk.bsky.social
Here with you! I can understand it may have its use in some fields/tasks ... but for creativity, you need real people like us.
~🦋
Bitmoji of me waving; text above reads "hey girl hey!"
August 23, 2025 at 3:51 PM
buttahflyk.bsky.social
We don't always have to "just be grateful" bc things could be worse. Sometimes, we just get mad, and that's OK. I know - that doesn't sound like me ... but I'm learning!
~🦋
#ChronicIllness #Disability #RareDisease #arthritis #fibromyalgia #sarcoidosis #SpoonieSky
sarcoidosisnews.com/columns/its-...
FLaB background with screenshot of Sarcoidosis News column titled "It's OK to get angry when our best-laid plans go awry
August 22, 2025 at 2:36 PM
buttahflyk.bsky.social
🤬🤬🤬🤬🤬🤬🤬🤬🤬🤬!!!
I don't even have words for how awful this is. I will never understand how we got here, how so many people can be so despicable as to like/follow/worship him.
~🦋
{Reposted @briantylercohen.bsky.social's screenshot to include ALT text)
Post from @NoLieWithBTC features photo of Trump and Trump's tweet that reads: "The Museums throughout Washington, but all over the Country are, essentially, the last remaining segment of "WOKE." The Smithsonian is OUT OF CONTROL, where everything discussed is how horrible our Country is, how bad Slavery was, and how unaccomplished the downtrodden have been - Nothing about Success, nothing about Brightness, nothing about the Future. We are not going to allow this to happen, and I have instructed my attorneys to go through the Museums, and start the exact same process that has been done with Colleges and Universities where tremendous progress has been made. This Country cannot be WOKE, because WOKE IS BROKE. We have the "HOTTEST" Country in the World, and we want people to talk about it, including in our Museums." BTC's post includes his own commentary, which reads: Trump just announced that he will be going after all Smithsonian museums that teach "how bad Slavery was," calling it "WOKE."
August 20, 2025 at 3:41 AM
buttahflyk.bsky.social
“Y’all think there are vampires that eat garlic even tho they’re not supposed to?"

That Q inspired this week's #SarcoidosisNews column. We don't always make the "best" choices, but sometimes that is what's best for us.
~🦋
#sarcoidosis #ChronicIllness #SpoonieSky
sarcoidosisnews.com/columns/diet...
FLaB background with screenshot of Sarcoidosis News column titled "Diet and exercise choices aren't so obvious with sarcoidosis"
August 8, 2025 at 2:05 PM
buttahflyk.bsky.social
Dean Cain was the worst Superman ever (even before this).

The real Superman knows ...
"THAT KIND OF TALK IS UN-AMERICAN."

ICE goes against everything this country stands for.
~🦋
Old Superman comic shows him talking to a group of people. Text reads: ..AND REMEMBER, BOYS AND GIRLS, YOUR SCHOOL-LIKE OUR COUNTRY-IS MADE UP OF AMERICANS OF MANY DIFFERENT RACES, RELIGIONS AND NATIONAL ORIGINS. SO... ... if YOU hear anybody talk against a schoolmate or anyone else because of his religion, race or national origin-don't wait: tell him THAT KIND OF TALK IS UN-AMERICAN. HELP KEEP YOUR SCHOOL ALL AMERICAN!
August 6, 2025 at 10:48 PM
buttahflyk.bsky.social
Bitmoji cartoon of me winking & pointing above text that reads "back at ya!"
July 27, 2025 at 4:22 PM
buttahflyk.bsky.social
Do what you can, when you can, how you can, and be sure to take care of you first.
~🦋
Bitmoji cartoon of me holding a big box labeled "ALL MY LOVE AND SUPPORT"
July 21, 2025 at 6:11 AM
buttahflyk.bsky.social
Bitmoji cartoon of me with arms out above colorful text that reads; HAPPY BIRTHDAY TO YOU!
July 19, 2025 at 6:29 PM
buttahflyk.bsky.social
When #symptoms creep up, it can be hard to figure out why, like in that old story of the frog in boiling water. Read more in this week's #SarcoidosisNews column.
~🦋
sarcoidosisnews.com/columns/boil...
#BoilingFrogSyndrome #arthritis #ChronicIllness #disability #RareDisease #sarcoidosis #SpoonieSky
FLaB background with screenshot of Sarcoidosis News column titled "Boiling frog syndrome: Symptoms of Sarcoidosis turn up the heat"
July 18, 2025 at 2:08 PM
buttahflyk.bsky.social
Great opportunity for #patients willing to speak about #ChronicIllness at #HLTH conference in Las Vegas in October.

Learn more & apply at apply.savvy.coop/hlth-us-2025...
~🦋
#SpoonieSky #SavvyCooperative
Text reads Smarter healthcare Stronger connections Bigger impact Savvy Cooperative logo with text that reads We are all patients (patients crossed out), unique, powerful, valid
July 17, 2025 at 5:20 PM