Float Like a Buttahfly
— Kerry Wong

I recently saw a post on social media that stated, “I’m a person who wants to do a lot of things trapped in a body that doesn’t.”  I felt this sentiment deeply; it was a perfect description of my life with sarcoidosis. I’ve always been someone who wants to…

When I told my primary physician a few months ago that I was diagnosed with avascular necrosis (also known as AVN or osteonecrosis) and would be having a total hip replacement in early June, he offered his sympathies. I understood that inclination, but I was thrilled. I would have…

“People will forget what you said, people will forget what you did, but people will never forget how you made them feel.” While the origins of this quote are uncertain, it is often attributed to writer and activist Maya Angelou. But even if Angelou didn’t actually say this, she…

My husband and I just celebrated our 23rd wedding anniversary. And our 18th. And our 13th, and our eighth, and our third. While every year is significant, we’ve made it a tradition to get married again every five years, with a new location and theme each time. From Las Vegas…

“What’s in a name? That which we call a rose/ By any other word would smell as sweet.” — Juliet in William Shakespeare’s “Romeo and Juliet” We’ve all heard those words before. Even those who slept through English lit class are familiar with one of the most famous lines from…

“Sarc-a-what?” That’s usually the response we get when we tell someone we have sarcoidosis. “What’s that?” they ask, and then tune out the long explanation we begin to give. “Oh, good,” they add, “at least it’s not cancer.” And that’s precisely why we need Sarcoidosis Awareness Month. Throughout…

As I stared into my closet this morning, a bright green shirt called out to me. It is St. Patrick’s week, after all, and I knew it would make the two Irish nursing assistants at the infusion center smile. When I pulled it out of the closet, the design seemed…

When I was diagnosed with “some kind of arthritis, probably autoimmune” in 2011, I wanted to learn all I could. After years of being dismissed and disregarded by doctors because I “looked fine,” even this nondiagnosis was a big step for me. It was validation, after all those years,…

When I was in grad school, I was a teacher’s assistant for an English literature class about 14th century author and poet Geoffrey Chaucer. During my first opportunity to teach the class, we focused on his poem “Parlement of Foules,” in which St. Valentine’s Day is designated as…

When it rains, it pours … but when it snows, it’s sarcoidosis. Sarcoidosis is often referred to as a snowflake disease because no two cases are exactly alike. Symptoms can begin at any age and affect any area of the body. It is often a chronic condition,…

I was recently scrolling through my Instagram feed when I saw a post from another sarcoidosis advocate that struck me. It was a simple video showing her with the text “1974” and a caption that read, “Starting today I’m 48 years old for only 48 more days. I’m entering…

“Hang on a sec, hon,” I called to my husband in the car, at the airport, and again on the plane. “I want to get a good shot. I’m sure something from this trip will work its way into my next column.” Boy, was I right — but not in…