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I was unexpectedly hospitalized in February 2020 after several days of feeling weak and more out of breath than usual. Given my pulmonary sarcoidosis, my healthcare team decided to admit me for observation. I had spent the previous month being tested and evaluated for a lung transplant. I…

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…

Last weekend in New York City offered a combination of past, present, and future, at least in terms of the weather. We had sub-freezing temperatures with rain and snow, a late sunset due to daylight saving time, and a sunny day that served as a reminder that spring is upon…

I’ve recognized that I have a huge problem. I recently had an appointment with my new cardiologist’s nurse practitioner. A few weeks prior, I’d had an echocardiogram to determine how my pulmonary sarcoidosis is affecting my cardiovascular system. The results were pretty good considering the condition of…

Navigating children, a spouse, and pets in one house is hard, especially when we’re all there at the same time. Sometimes we’re together all day. If someone told me this could happen 20 years ago, I’d have called them a liar and it a deal breaker. I couldn’t imagine that…

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,…

I’m grateful. On Rare Disease Day, and since, I’m grateful. On this day of consequence and nonsense, of war and peace, of movement and stagnation, of highest courts and lowest valleys, of pandemic and hope, I’m grateful. I’m even grateful for sarcoidosis, or at least my version of…

Sometimes when I awake in the morning, I’m afraid of what the day may bring. Then, when I retire for the evening, I’ll take my tablet with me to bed to read or listen to jazz. But just when I’m ready to call it a night, a feeling of…

I’ve been learning the hard way that recovery from COVID-19 is in some ways reminiscent of dealing with sarcoidosis. After being diagnosed with COVID-19 in early January, quickly obtaining monoclonal antibodies to aid in my recovery, and then completing a 20-day isolation period due to my immunocompromised state,…

“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,…