Kerry L. Wong 🦋 Float Like a Buttahfly

@buttahflyk

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

362 Siguiendo614 Seguidores674 Publicaciones

Bluesky

¿Es tu perfil?Reclámalo y buttahflyk.dirty.social es tuyo.Reclamar perfil

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· 5d

I don't know what else was going on behind the scenes, but B has been disrespected all season. I hate to see her go, but I hope she gets picked up by a team that will actually put her on the court. #WNBA🏀 #NYLiberty

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· 10d

Signing up for ESPN+ @espn.com for 2 months just so I can watch the @wpbl.bsky.social season. History begins today. Let's go, Heights! 🦋 #WPBL⚾ #NYHeights #EveryoneWatchesWomensSports

WPBL Women's Pro Baseball League
Saturday, August 1, 2026

Logos for LA Queens @ NY Heights

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· Jul 4

New York Liberty!!! Awesome game vs Lynx tonight! 36pts for Stewie Double double for JJ And ... oh yeah, DJ Ria stopped by our section! 🦋 #WNBA🏀 #LightItUpNYL🗽

Hubby & I at the Liberty game with DJ Ria

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· Jul 1

Congratulations 2x Commissioner's Cup Champions New York Liberty!!! & Congrats to Vegas for making us WORK for it. Great game! 🦋 #WNBA #LightItUpNYL🗽

Photo of the jumbotron at Barclays Center showing 2026 Commissioner's Cup Champions NY Liberty

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· Jun 30

Reposted with Alt text THE BIG BEAUTIFUL DELAY Why You're Not Feeling the Bill - Yet H.R.1 (The "Big Beautiful Bill") was designed to delay the damage until after the 2026 midterms. STAY ALERT. SPREAD THE WORD, KNOW WHAT'S COMING. Watch what's delayed - not just what's announced.

THE BIG BEAUTIFUL DELAY

Why You're Not Feeling the Bill - Yet

H.R.1 (The "Big Beautiful Bill") was designed to delay the damage until after the 2026 midterms.

Medicaid work rules

Dec. 2026

Late 2026

Gradually by 2026

Here's what's coming... but not just yet:

CUTS COMING AFTER THE ELECTION:

Food aid restrictions

Clean energy credits end Mid to late 2026

Student loan changes

Affordable housing cuts Phased in post-2025

Rural hospital funding declines Starts 2026

WHY IT'S DELAYED:

Politicians want your vote before you feel the impact The harshest parts are hidden until after ballots are cast By then, it's harder to stop.

STAY ALERT. SPREAD THE WORD, KNOW WHAT'S COMING. Watch what's delayed - not just what's announced.

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· Jun 19

Sick of being sick: When #ChronicIllness makes acute illness worse, the results are exhausting That's the focus of this week's #SarcoidosisNews column (and why I haven't written in so long). Read all about it at sarcoidosisnews.com/columns/afte.... 🦋 #bronchitis #fatigue #sarcoidosis #SpoonieSky

FLaB background with screenshot of Sarcoidosis News column:
After unrelenting health setbacks, frankly, I'm sick of being sick
When chronic illness makes a cute illness worse, the results are exhausting
Written by Kerry Wong | June 19, 2026

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· Jun 14

(Aside from Dolan) it is such pure joy watching this team, this recognition. Seeing them with such love – for each other, for their families, for New York City, and for their fans ... it's beautiful! 🗽🏀🏆 Congratulations, @ny-knicks.bsky.social! 💙🧡💙🧡💙 #NYKnicks #NBAChampions

Screenshot from my tv of the 2026 NBA Champion Knicks with trophy

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· Jun 14

Ok, boys ... Let's do this! Knicks in 5! #NBAFinals #LetsGoKnicks Go New York go New York GO! 💙🧡💙🧡💙

Blue T-shirt background with orange logos for Jalen Brunson, Karl-Anthony Towns, Josh Hart, OG Anunoby, & Mikal Bridges

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· Jun 13

We're not stopping at The Kennedy Center.

Before this is over, We the People are going to take that vile, traitorous sex offender's name and handprints off of every part of this nation that he has poisoned and polluted over the last ten years.

He and his cadre of racist, phobic, sycophantic enablers are going to be made legally and politically accountable, and together, we are going to course correct from the greatest collective error in our 250-year history.

He will not write our epitaph. We will outvote his cultic disciples and tear down every remnant of him and of his disgraceful movement.

May all decent, patriotic Americans be heard and counted in these moments.

John Pavlovitz

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· Jun 1

To all those celebrating Pride this month: I see you. I celebrate you. 🏳️‍🌈🏳️‍⚧️🏳️‍🌈🏳️‍⚧️🏳️‍🌈 To all those fighting it: I see you, too. YOU are the ones who should feel shame. 🦋

TIME SAVER
TO COMMON BIGOTED REPLIES
Stop LGBTQ+ Hate Online

"MEN'S MENTAL HEALTH MONTH IS IN."
November. (Ever heard of "Movember"?)

"STRAIGHT PRIDE ISN'T A THING."
Nobody has ever been oppressed or killed for being straight. You demand it every time we post about our Pride, so organise it yourself. No one is stopping you.

"WHAT ABOUT VETERANS?"
Veterans and military service people have multiple days/weeks/months all year long.
If you only mention Veterans to argue against Pride, you're not supporting them. You're using them.

"MY TAXES SHOULDN'T PAY FOR THAT."
Taxes fund plenty of things you don't personally attend or support. That's how society works. Queer people pay taxes too.

"PRIDE IS TOO IN YOUR
Pride events are for us, not you. You're welcome to attend but we are not going to conform for your comfort.

DIFFERENT ISN'T WRONG. HATE IS. CHOOSE KINDNESS. CHOOSE RESPECT

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· May 31

"I tell you this story to share how a disease so horrible can be a gift at the same time. Over the years, I learned to turn my grief, frustrations, and fear into motivation." Demeshia Montgomery 1981-2025 "Never Give Up" 🦋 #ArthritisAwarenessMonth #scleroderma #PatientVoice #PatientAdvocacy #spoonie

Kaleidoscope/AAM background with quote:
"I tell you this story to share how a disease so horrible can be a gift at the same time. Over the years, I learned to turn my grief, frustrations, and fear into motivation."
Demeshia Montgomery
"Never Give Up"

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· May 31

Demeshia Montgomery lived with #scleroderma, a rare form of #arthritis, and shared her story in Kaleidoscope #RareDisease Stories. Sadly, she passed away on August 31, 2025, leaving a legacy of advocacy and hope. May her memory be a blessing. 🦋 a.co/d/0bdyweD6 #ArthritisAwarenessMonth #SpoonieSky

Kaleidoscope/AAM background with photo of Demeshia Montgomery, 1981-2025, who lived with scleroderma.

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· May 29

"Kaleidoscope Rare Disease Stories" features stories by 7 #sarcoidosis warriors, who often experience #arthritis: Fabian Bacchus Cheryl Bradford Hanna Curtis Brad DMag Peter Devonald Jim Kuhn & me! + Foreword by Duff, who also lives with #neurosarcoidosis. 🦋 a.co/d/0bdyweD6 #ArthritisAwarenessMonth

Kaleidoscope/AAM background with Bitmoji of me holding copies of the book, and text:
Sarcoidosis patients
often experience sarcoid arthritis
Fabian Bacchus
Cheryl Bradford
Hanna Curtis
Brad DeMaagd
Peter Devonald
Jim Kuhn
Kerry Wong
*with Foreword by Karen
Duffy Lambros

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· May 27

Greta lives with hypermobile Ehlers-Danlos Syndrome #hEDS, a #rare connective tissue disease. She shares her story in Kaleidoscope #RareDisease Stories. Order your copy to read Greta’s story and 59 others. Proceeds donated to NORD. 🦋 a.co/d/0bdyweD6 #ArthritisAwarenessMonth #arthritis #SpoonieSky

Kaleidoscope/AAM background with quote:
“I look back on those early years with wonder. I felt like an absolute alien of a person, dying to be loved and accepted but hating to be touched.”
Greta MacMillan
Hypermobile Ehlers-Danlos Syndrome
“Different”

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· May 26

In 2015, I was diagnosed with #sarcoidosis, a rare #inflammatory disease that can affect any part of the body. Often, that inflammation causes joint pain, swelling, and stiffness, aka sarcoid #arthritis. Learn more at sarcoidosisnews.com. 🦋 #ArthritisAwarenessMonth #ChronicIllness #SpoonieSky

FLaB/AAM background with Bitmoji of me pointing to myself and text:
Sarcoid Arthritis
In 2015, I was finally diagnosed with sarcoidosis, a rare inflammatory disease that can affect any part of the body. For me, it affects my lungs, skin, joints, and
autonomic nervous system.
In many cases (including mine), that inflammation causes joint pain, swelling, and stiffness. This is known as sarcoid arthritis or sarcoid arthropathy.
Sarcoidosis also causes systemic
symptoms including fatigue and brain
fog.
Learn more at sarcoidosisnews.com.

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· May 25

Lynn learned about her #RareDisease after the Boston Marathon bombing. She shares her #hEDS story in Kaleidoscope Rare Disease Stories. Order your copy to read her story and 59 others. Proceeds donated to NORD. 🦋 a.co/d/0bdyweD6 #ArthritisAwarenessMonth #HypermobileEhlersDanlosSyndrome #arthritis

Kaleidoscope/AAM background with photo of Lynn Julian, Hypermobile Ehlers-Danlos Dyndrome

Kaleidoscope/AAM background with quote:
"Dr. Smallz affords me a higher level of independence than I've ever had as a person with a disability. My service dog has been a huge part of my resiliency and recovery."
Lynn Julian, Hypermobile Ehlers-Danlos Dyndrome
"My Rare Disease Was Not Diagnosed … Until I Survived a Terrorist Attack”

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· May 22

Did you know #KidsGetArthritisToo? Abby lives with a #rare form of #JIA. She shares her #arthritis #uveitis story in Kaleidoscope Rare Disease Stories. Order your copy to read Abby's story — and 59 others. Proceeds donated to NORD. 🦋 a.co/d/0bdyweD6 #ArthritisAwarenessMonth #KGAT

Kaleidoscope/AAM background with photo of Abby Ferraro, who lives with
Enthesitis-Related Juvenile Idiopathic Arthritis

Kaleidoscope/AAM background with quote:
"I'm not happy about having uveitis or my list of other diseases, but I'm grateful for what I've learned and gained from those diseases. thrive, as a rare disease patient."
Abby Ferraro
"Everyone Has Something: My Uveitis
Journey"

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· May 20

@ifaiarthritis.bsky.social presents: World #Autoimmune & Autoinflammatory #Arthritis Day Don't miss the #WorldAiArthritisDay Livestream! 5:00 - 9:00 PM ET @IFAiArthritis on FB & YT Drive Awareness. Learn more at aiarthritisday.org. 🦋 #ArthritisAwarenessMonth #AiArthritis #MyAiArthritisDisease

FLaB/AAM background with Bitmoji of me driving down a windy road with text:

World AiArthritis Day
World Autoimmune & Autoinflammatory Arthritis Day
Don't miss the Livestream!
5:00 - 9:00 PM ET
@IFAiArthritis on FB & YouTube
* AiArthritis Voices 360 LIVE Talk Show
* Telling Your AiArthritis Story to Create Change
* Patient Voice Panel: Being Heard Isn't Simple
* Patient Story Spotlights
* #AiArthritisDay Jeopardy
Learn more at aiarthritis.org.
Drive Awareness

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· May 20

In 2011, they said, “some kind of #arthritis, probably #autoimmune.” It took 4 more years to get an accurate diagnosis. #sarcoidosis #RA #Sjogrens What’s your #AiArthritis story? 🦋 #ArthritisAwarenessMonth #WorldAiArthritisDay #MyAiArthritisDisease @ifaiarthritis.bsky.social aiarthritisday.org

FLaB/AAM background with Bitmoji of me and text:
#MyAiArthritisDisease
World Autoimmune & Autoinflammatory Arthritis Day

In 2011, after 4 years of being dismissed, a doctor finally said “You have some kind of arthritis, probably autoimmune.”

I spent the next four years with rotating misdiagnoses and failed treatments before finally getting accurate diagnoses.

In the years since, I’ve accumulated a few diagnoses that fit the category:
Sarcoidosis
Rheumatoid Arthritis
Sjögren’s Disease

The inflammation causes more than joint pain:
fatigue, swelling, fevers & chills, brain fog, full body aches, weakness, dizziness, and more.
... and it can affect other organs, too.

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· May 14

Make your voice heard! Tell your legislators to Ensure All #Copays Count with #HELPCopaysAct. Visit the arthritis.org/advocate/action-center to quickly & easily ask your legislators to support this important bill. 🦋 #ArthritisAwarenessMonth #arthritis #advocacy #ChronicIllness #SpoonieSky

FLaB/AAM background with text:

Ensure All Copays Count!
Help Ensure Lower Patient (HELP) Copays Act

Many insurance plans currently use accumulator adjustment programs, which apply any copay assistance (such as manufacturer copay cards) before a deductible, forcing patients to pay higher out-of-pocket costs.

The bipartisan HELP Copays Act (S. 864) aims to curb this practice, instead allowing any financial assistance to count toward the deductibles. That directs the savings where it belongs: with the patients.

Visit the Arthritis Foundation Action Center to quickly & easily ask your legislators to support this important bill.

Learn more at arthritis.org/advocate/action-center.

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· May 13

Rebekah lives with #cystinosis, which can cause #arthritis symptoms. She shares her story of trauma, illness, and identity in Kaleidoscope #RareDisease Stories Order your copy to read Rebekah’s story — and 59 others Proceeds donated to NORD 🦋 a.co/d/0bdyweD6 #ArthritisAwarenessMonth #ChronicIllness

Kaleidoscope/AAM background with photo of Rebekah Palmer (cystinosis) peeking out over a copy of Kaleidoscope Rare Disease Stories

Kaleidoscope/AAM background with text
"I hear the doctors discuss this three-month to three-year life expectancy, but for as long as I can remember, I have also heard my parents say, when I was diagnosed with cystinosis, that I would die between the ages of nine and twelve."
Rebekah Palmer
"This is Me"

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· May 12

Back in 2008, 2 people suggested that my widespread pain, debilitating fatigue, brain fog, & insomnia might be #fibromyalgia. Still, it took 4 years before doctors would confirm the diagnosis. That’s why we need to share our stories. 🦋 #ArthritisAwarenessMonth #FibromyalgiaAwarenessDay #SpoonieSky

FLaB/AAM background with Bitmoji of me looking miserable, and text:
Fibromyalgia
Back in 2008, two people suggested that my widespread pain, debilitating fatigue, brain fog, insomnia, and more might be fibromyalgia. I looked it up, and the more I learned, the more I knew they were right. Still, it took four years before doctors would confirm the diagnosis.

They said,
“That’s just a garbage pail diagnosis
“You’re just depressed”

That’s why we need to share our stories.

May 12 is Fibromyalgia Awareness Day
🦋
Arthritis Awareness Month

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· May 11

Jim lives with #CRESTsyndrome and #sarcoidosis, which can cause #arthritis symptoms. He shares his coping strategy in Kaleidoscope #RareDisease Stories Order your copy to read Jim’s story — and 59 others Proceeds donated to NORD 🦋 a.co/d/0bdyweD6 #ArthritisAwarenessMonth #ChronicIllness #SpoonieSky

Kaleidoscope/AAM background w/ photo of Jim Kuhn, who lives with CREST Syndrome and sarcoidosis

Kaleidoscope/AAM background w/ quote from Jim Kuhn:
I have learned a lot of coping skills and developed a lot of tools to manage not only to survive but thrive as a rare disease patient.

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· May 10

@ifaiarthritis.bsky.social presents: World #AiArthritis Day May 20 EVERYWHERE Drive awareness about #AUTOimmune & #AUTOinflammatory diseases w/ #arthritis as a primary symptom Share your photo & story w/ #MyAiArthritisDisease aiarthritisday.org 🦋 #ArthritisAwarenessMonth #AiArthritisDay #SpoonieSky

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· May 9

#Osteoarthritis The most common type of arthritis, caused by wear-and-tear, usually from weight, age, or overuse. This is what led to my hip replacement in 2023, and it’s why I’m currently getting physical therapy for my knee. 🦋 #ArthritisAwarenessMonth #OA #arthritis #ChronicIllness #SpoonieSky

FLaB/AAM background with photo of me wearing "HIPPIE" Tshirt (w/ image of artificial hip) and text:
Osteoarthritis
The most common form of arthritis, this degenerative form is caused by wear-and-tear, usually from weight, age, or overuse
(as in athletes).

This is what led to my hip
replacement in 2023, and it’s why
I’m currently getting physical therapy for my knee. I’m pretty sure it’s starting to affect a few other
joints, too.

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· May 9

It's a New York basketball kind of night! New York Liberty opener & Knicks playoffs game 3... And we're watching both from a hotel in Arizona! 🦋🗽🏀 #LightItUpNYL #LetsGoKnicks

Laptop on the bed showing NY Liberty v CT Suns game; tv on the wall showing Knicks v 76ers

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· May 8

“My body seems to call out like a late-night infomercial, ‘But wait — there’s more!’” I’ve got so many different types of #arthritis, they get in the way of addressing my arthritis! That’s the focus of my #Sarcoidosis News column … and #ArthritisAwarenessMonth! 🦋 sarcoidosisnews.com/columns/when...

FLaB/AAM background with screenshot of Sarcoidosis News column titled, "When pain prevents progress, pursue purpose with passion"

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· May 7

Types of #Arthritis Degenerative #osteoarthritis - wear-and-tear #Autoimmune - immune system attacks itself Inflammatory - overactive immune system #Fibromyalgia - widespread musculoskeletal pain and fatigue 🦋 arthritis.org | aiarthritis.org #ArthritisAwarenessMonth #ChronicIllness #SpoonieSky

FLaB/AAM background with text:
Types of Arthritis

Degenerative - Most common; caused by wear-and-tear, often associated with age, weight, or overuse

Autoimmune - Stems from the immune system attacking itself; can affect other parts of the body beyond joints

Inflammatory - Overactive immune system creates inflammation in joints (and often other areas)

Fibromyalgia - Generally characterized by widespread musculoskeletal pain and fatigue

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· May 6

Heading down to Phoenix for the National Organization for Rare Disorders Living Rare Living Stronger Patient & Family Forum. If you're going to be there, lmk - I'd love to connect! *Special thanks to Bionews for making this trip possible! 🦓🦋 #RareDisease #sarcoidosis #community #LRLS #ZebraStrong

Photo of me at airport gate with JetBlue planes outside behind me. text reads
Heading to Phoenix for NORD Living Rare Living Stronger

Kerry L. Wong 🦋 Float Like a Buttahfly@buttahflyk· May 6

On May 16, my Buttahflies will be volunteering at the Arthritis Foundation Walk to Cure Arthritis NYC, and we'd love for you to join us: • Walk • Volunteer • Make a donation • Spread the word 🦋 events.arthritis.org/participants/buttahflyk #ArthritisAwarenessMonth #arthritis