Happy anniversary to me! On Sept. 24, 2014, I was diagnosed with sarcoidosis. These eight years have been quite amazing, though I previously thought the date had been closer to nine years. Regardless, when I think of where my life was at that time — in Maryland, struggling to…
“Don’t let the day get away from you!” Growing up, I remember my family members saying this to my brother and me regularly. It means that you shouldn’t let the day pass you by without doing something. That something could be anything, as long as it was constructive. It was…
The other day, I was heading home from my intravenous immunoglobulin (IVIG) infusion, grateful to be back on schedule after my recent insurance delay. I was mindlessly singing along to whatever was playing on the radio, which turned out to be Matchbox Twenty — and I realized that…
Hope. “I guess it comes down to a simple choice, really. You get busy living, or get busy dying.” Recently, I’ve found myself watching and rewatching one of my favorite movies, “The Shawshank Redemption,” starring Morgan Freeman and Tim Robbins. The movie chronicles their friendship at a fictional…
Last week, my older brother celebrated his 60th birthday. Wow, 60! My brother and I are two years apart and have a very close relationship. My mother was a single parent and it was always the three of us, so we had no choice in liking each other. He had…
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…
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