Float Like a Buttahfly
— Kerry Wong

A graphic depicting a butterfly winding through the sky.

Kerry Wong lives in Westchester, NY, with her husband, the boy next door she had a crush on since she was a child. She was diagnosed with sarcoidosis in 2015, after an 8-year search for answers. Though disabled, Kerry remains active as a writer and advocate for the rare disease and chronic illness communities. Her goal is to help others living with these conditions feel seen, validated, and empowered. She recently published Kaleidoscope: Rare Disease Stories, a diverse collection of true stories told by nearly 50 rare disease warriors, and plans to expand this into a series. Through her column, Kerry shares how chronic illness has led to transformation, and invites readers to float with her, “like a Buttahfly.”

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In an inaccessible world, sometimes you can’t make lemonade

When life gives you lemons, you make lemonade, or so they say. That metaphor doesn’t work quite as well for me, though, because I don’t like lemonade. Still, I agree with the sentiment and try to make the best of things whenever I can. But sometimes you just can’t stomach…

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You Say Remission, I Say Remission-ish

For the past few months, I’ve been having a lot of pain around my ribs. I may have dislocated a rib, causing everything in the area to tense up in response (I’ve done that before), or it could be costochondritis (inflammation in the connective tissue around the ribs), which is…

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Finding the Antidote for Impostor Syndrome

As I type this, I have 13 tabs open in my browser. I’ve been working on advocacy campaigns for the Arthritis Foundation and the RareAction Network, preparing for Rare Disease Week meetings with my members of Congress, reading other perspectives on Rare Disease Day, checking three different email addresses,…

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Dancing the Sarcoidosis ‘Cha-Cha Slide’

“Optimist: Someone who figures that taking a step backward after taking a step forward is not a disaster, it’s a cha-cha.” — Robert Brault This is exactly what sarcoidosis is like. It’s like we’re living in the song “Cha-Cha Slide.” Having sarcoidosis is a never-ending dance of symptoms, doctors,…

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Sarcoidosis Made My Close Call With COVID-19 Even Scarier

We’re all familiar with the evolutionary fight-or-flight response. When faced with stress or danger, we go through physiological changes that enable us to either battle a predator (fight) or escape the situation (flight). However, there is another option, although we probably wouldn’t choose it willingly: to freeze. That’s…

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Celebrations With Sarcoidosis Are Different, but Still Important

Happy New Year! By now, we’ve all hopefully recovered from the holidays and are starting to get into the groove of 2022, hoping and planning for a better year. The recovery may be a little easier this year, as celebrations have looked different since COVID-19 took over the world. We’ve…

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Sarcoidosis Isn’t All in Your Head, but Therapy Can Still Help

I’ve been reading through my recent columns, and I noticed that I frequently mention how tremendously helpful therapy is. There are a few reasons for that. When I started my blog in 2010, my goal was to help people. I thought that sharing how I got through difficult times…

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Setting Boundaries Is Critical When Living With Chronic Illness

I’ve never been very good with boundaries. I’ll respect yours, sure. But when it comes to setting my own and sticking to them, not so much. Over the years, this has taken its toll on relationships, employment, and even my health. Kerry at Disney World with her mobility…

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This Thanksgiving, I’m Grounded in Gratitude

Thanksgiving has always been one of my favorite holidays. It’s not about material things, or one religion over another, or one-upping anyone with decorations or extravagant gifts. It’s simply a day of gratitude. A day for friends, family, football, and of course,…

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More Than a Meal: Cooking Curry for the Sarcoidosis Soul

Yesterday, I made vegetable curry for dinner, and it was a big deal. Well, it was for me. I’ve never been much of a cook. When I was 15, I “wooed” my husband by burning a frozen pizza, so he knew what he was getting into when he chose to…

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Losing One Warrior Affects the Entire Sarcoidosis Community

The sarcoidosis community took a serious hit when we learned of fellow warrior Rodney Reese’s passing on Sept. 25. A beloved husband, father, and grandfather, Rodney was also a friend, brother, and father figure to thousands of people living with sarcoidosis. We have lost a cherished member of our family.

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From Rocky Roads to Smooth Sailing: How I Travel With Sarcoidosis

Back when I was healthy, I’d work up to three jobs at a time and volunteer on top of that. My husband’s work schedule was based on seniority, and because he was relatively new to his job, he usually had crummy hours and even crummier days off. He was coming…

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19 Vials of Blood Made Me Fall in Love With My Doctor

The other day, I sent a message to my rheumatologist asking about getting a third shot of the COVID-19 vaccine. It was 11 p.m. on a Sunday, but I had to send it before I forgot. A half-hour later, I received two notifications about a new message and a letter…


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