Kerry L. Wong 🦋 Float Like a Buttahfly
LightNews LightNews
banner
buttahflyk.bsky.social
Kerry L. Wong 🦋 Float Like a Buttahfly
@buttahflyk.bsky.social
500 followers 340 following 450 posts
Writer | Educator | Patient Advocate
floatlikeabuttahfly.blogspot.com 🦋 buttahflyk.substack.com
🦋 Kaleidoscope Rare Disease Stories a.co/d/ia0zSim
🦋 Columnist | Sarcoidosis News
🥄🕊️ #🟦 #BLM #defy🧹#resist #SarcStrong #ZebraStrong🦓 #AlwaysCoordinated😘 she/her
Posts Replies Media Videos
buttahflyk.bsky.social
Just a few more days 'til the Arthritis Foundation Jingle Bell Run in Westchester!

Join us if you can, or please make a donation to support over 4 million New Yorkers living with some form of #arthritis.

Anything you can do is greatly appreciated.
~🦋
events.arthritis.org/participant/JBRButtahfly
FLaB promo for upcoming AF JBR event. Features Bitmoji of me in a Christmas wreath, with text that reads: Be there with bells on! Saturday, December 13 Manhattanville University Purchase, NY Just a few more days 'til the Westchester County Jingle Bell Run Join us if you can, or please make a donation to support over 4 million New Yorkers living with some form of arthritis. events.arthritis.org/participant/JBRButtahfly
December 9, 2025 at 3:11 PM
buttahflyk.bsky.social
@rarepatientvoice.bsky.social is looking for patients for a PAID opportunity to share their experience
WHO: Patients diagnosed with #RheumatoidArthritis
WHAT: 30-60 minute initial interview
COMPENSATION: $120
Visit rarepatientvoice.com/Buttahfly for details
~🦋
#arthritis #ChronicIllness #SpoonieSky
FLaB background w/ promo for RPV 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 Patients diagnosed with Rheumatoid Arthritis WHAT 30-60 minute initial interview COMPENSATION $120 Visit rarepatientvoice.com/Buttahfly for details.
December 9, 2025 at 1:02 AM
buttahflyk.bsky.social
Looking for the perfect gift for someone with a #ChronicIllness? This week's #Sarcoidosis News column is here to help!
Visit sarcoidosisnews.com/columns/holi... for some great ideas!
~🦋
#HappyHolidays #SpoonieSky #GiftGuide
#arthritis #fibromyalgia #sarcoidosis
FLaB background with screenshot of Sarcoidosis News column titled "A holiday gift guide for your loved one with sarcoidosis
December 5, 2025 at 4:58 PM
buttahflyk.bsky.social
Calling out to the #SpoonieSky community:

I'm working on a column for #Sarcoidosis News with holiday gift ideas.

What have YOU gotten (or do you hope to get) that's helpful for someone with #Chroniclllness / #disability?

Suggestions greatly appreciated!
~🦋
November 28, 2025 at 8:04 PM
buttahflyk.bsky.social
Congratulations to
NJ/NY Gotham FC,
2025 NWSL CHAMPIONS!!!
🦋🩵⚽
#GothamFC #NWSL #UnderdogMyAss
Gotham FC 2025 NWSL champions logo text w/ photo of players hugging in celebration
November 23, 2025 at 3:46 AM
buttahflyk.bsky.social
Our own “Freaky Friday” experience:

When my #caregivers and I swapped roles, it was definitely a learning experience. Read all about it in this week’s Sarcoidosis News column.
~🦋
sarcoidosisnews.com/columns/when...
#ChronicIllness #PatientExperience #sarcoidosis #SpoonieSky
FLaB background with screenshot of Sarcoidosis News column titled. "When patients and caregivers swap roles, empathy usually follows
November 21, 2025 at 7:43 PM
buttahflyk.bsky.social
So sad to learn about the passing of @sfdirewolf.bsky.social, a true icon and inspiration in the #disability community.

www.npr.org/2025/11/15/n...
~🦋
Screenshot of latest update from GoFundMe, features photo of Alice and text that reads: Alice Wong passed away on Friday, November 14th at UCSF Hospital due to an infection. She was 51 years old. Alice lived in San Francisco and grew up in Indiana. Alice was the daughter to Henry and Bobby. The elder sister to Emily and Grace. The cat mom to Bert and Ernie, and a dear friend to many. She will be remembered as being a fierce luminary in disability justice, a brilliant writer, editor and community organizer. Her work can be found at Disability Visibility Project. As we mourn the incomprehensible loss of Alice, we share the words she gifted us with from her memoir, Year of the Tiger. “The real gift any person can give is a web of connective tissue. If we love fiercely, our ancestors live among and speak to us through these incandescent filaments glowing from the warmth of memories. ” We would like to invite her friends, community, and her many fans to contribute to Alice’s GoFundMe to continue the legacy of her work. Screenshot from IG post that reads: "This is Alice's friend Sandy Ho, posting. Per Alice's wishes, this message is being shared at the time of her passing. Hi everyone, it looks like I ran out of time. I have so many dreams that I wanted to fulfill and plans to create new stories for you. There are a few in progress that might come to fruition in a few years if things work out. I did not ever imagine I would live to this age and end up a writer, editor, activist, and more. As a kid riddled with insecurity and internalized ableism, I could not see a path forward. It was thanks to friendships and some great teachers who believed in me that I was able to fight my way out of miserable situations into a place where I finally felt comfortable in my skin. We need more stories about us and our culture. You all, we all, deserve the everything and more in such a hostile, ableist environment. Our wisdom is incisive and unflinching. I'm honored to be your ancestor and believe disabled oracles like us will light the way to the future. Don't let the bastards grind you down. I love you all."
November 16, 2025 at 7:30 AM
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