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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,…

Yesterday, my doctor cleared me to return to the office, effectively ending my COVID-19 isolation. After testing positive more than two weeks ago, and feeling quite sluggish for several days beforehand, yesterday’s at-home test came back negative. What a relief. Thankfully, as I previously mentioned, I was able…

It’s easy to forget what’s most important when living with a chronic health condition. I reflect on this often, especially when I’m working out at the gym or trying to do “normal” activities. Achieving a sense of normalcy with sarcoidosis is difficult, especially during a pandemic. A shifting sense…

My last doctor’s appointment of 2021 was on Dec. 30 and involved a six-minute walk test and a follow-up with my pulmonologist. The walk test didn’t seem to go well, as I required more supplemental oxygen than I usually do while working out at the gym. I explained this to…

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…