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…
Float Like a Buttahfly – a Column by Kerry Wong
“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…
Recent Posts
- Critical conversations: Why talking about our medications is essential
- Study challenges theory of microbes as sarcoidosis cause
- FDA, developer align on protocols for trial of pulmonary sarcoidosis drug
- Large study ties sarcoidosis to risk of permanent liver scarring
- Reflecting with gratitude on what sarcoidosis has brought to my life
- Lingering heart inflammation tied to cardiac sarcoidosis relapse risk
- Study identifies three genes that may influence sarcoidosis risk
- How music can help us process chronic pain, and even provide some relief
- Philadelphia summit to bring together sarcoidosis patients, experts
- Immune changes may help reveal disease activity in cardiac sarcoidosis