A few days ago, I celebrated the five-year anniversary of the first of my two spontaneous pneumothoraces, a result of pulmonary sarcoidosis. I can’t believe it’s been five years, but I’m happy to celebrate. By all accounts, I’m stable and doing fairly well. About eight months after my…
As I type this from my living room, all I can think about is that I shouldn’t be here. I should be at the hospital getting my weekly infusion. I should be laughing with the nurses, still amazed at how much easier it’s been since I had a port-a-cath inserted…
I’m in the middle of training for the TCS New York City Marathon, the largest marathon in the world. I also have pulmonary sarcoidosis. I have written many times about my love of running, which I discovered at the start of the COVID-19 pandemic. My favorite gyms…
The other day I was surprised by a knock on my door, and even more surprised to hear the response when I asked who it was. It sounded like he said Jamaal Bowman — my congressman. It even sounded like his voice, which I recognized from countless interviews,…
The last few weeks have been an excellent reminder of just how important and vital community can be, especially when you have a rare disease. Last weekend, the Foundation for Sarcoidosis Research (FSR) hosted its Global Virtual Patient Summit. FSR does a great job of bringing the sarcoidosis…
What have you done today that would make a difference in your life? What did you do yesterday? Are you just going through the motions of existing, or are you living the adventures of your life? These questions may sound a little suspicious, but they have to be asked. They’re…
Your comfort zone keeps you comfortable. That’s where the lie begins. Earlier this year, I bought a new SUV. Well, not brand new, but newer than what I had before. It’s not like my other SUVs in that it doesn’t have a sunroof, but I can live with the minor…
“I’m broke, but I’m happy I’m poor, but I’m kind I’m short, but I’m healthy, yeah!” — Alanis Morissette Well, maybe not that last one. Inspired by recent columns by my colleagues relating “Stand By Me” to Friedreich’s ataxia and “West Side Story” to cystic…
This week marks my one-year anniversary as a columnist for Sarcoidosis News. I once read that we tend to underestimate how much our lives can change in a decade, but overestimate the potential change in a year. With all due respect, that person hasn’t seen my life! There…
Life interrupted! The other night I fell out of bed. I’d been dreaming I was having drinks with my brother, and while we were talking, someone stepped over the bar and started to walk on me. My immediate reaction was to kick this person, which I did. I kicked so…
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