Float Like a Buttahfly
— Kerry Wong

Before I was diagnosed with sarcoidosis, I’d never heard of this disease. No one I knew had heard of it, either, except, as my mom insists, in the differential diagnosis on the TV procedural “House, M.D.” Even then, it was never the answer. No one actually had sarcoidosis.

People sometimes say their cars are an extension of their personality: sporty, sexy, rugged, classy, adventurous — any of the descriptors used in commercials. I take that idea a bit further. A true extension of my personality, my car is a little ridiculous and a lot of fun, and she…

I’ve joked before that “middle-aged date night” entails my husband and me scheduling our annual physicals together. First the doctor’s office, then the lab, then maybe a stop for lunch before we head home for a nap. Things change for everyone as they get older, but it feels like I’ve…

Earlier today, I scheduled appointments for my husband and me to see our primary doctor and pulmonologist. I also rescheduled appointments with my cardiologist, neurologist, endocrinologist, and ophthalmologist, all of which I’d had to cancel recently because I was too sick to go to the doctor. There really is such…

I recently recorded my first episode as co-host of a podcast about arthritis — defining it, differentiating the various types, and discussing how it affects us. Our group of co-hosts included people living with rheumatoid arthritis (RA), Sjögren’s syndrome, non-radiographic axial spondyloarthritis, and sarcoidosis. I think we raised more…

There seems to be a correlation between productivity and inherent value nowadays. The busier a person is at work, the more she is viewed as a great employee; the more a person accomplishes in life, the more she is praised and admired. While most of us understand the difference between…

It feels like something is missing for me this month. For the past two years, really. Before 2020, my Aprils were full of events, get-togethers, support, and connection with my sarcoidosis family. Now, we’re all in our own homes, saying again how much we miss each other as we get…

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…

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,…

“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,…

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…

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…