Private Chef, Writer & Podcaster
Twenty years ago, I would’ve laughed at the idea that sarcoidosis could slowly rewrite my life until my heart needed supervision and my lungs required accessories. I didn’t know my future involved acronyms, oxygen tubing, and a pharmacy relationship built on mutual trust. If your body has ever quietly changed the rules while you were busy living… this one’s for you.
Would you let a stranger wrap something around your bare skin that’s been on hundreds of other bodies… and just trust it’s clean? If you’re living with sarcoidosis (or any chronic illness), that question hits different—because “probably fine” is not a medical plan. Come with me the next time I’m in a doctor’s office, silently judging a blood pressure cuff like it owes me rent.
It wasn’t the cold air that woke me up—it was the memory of cold showers in the Caribbean, decades before I knew the word “sarcoidosis” would take over my vocabulary. One frosty morning in 2025 Upstate New York, I stepped into a hot shower and was transported back to simpler times when my lungs were clearer and the water was somehow always warmer, even when it wasn’t. And yeah, maybe I didn’t know how much those ocean swims mattered… until they weren’t an option anymore.
In 2007, I got a diagnosis that came with a timeline and an attitude: sarcoidosis had moved into my heart, and the future was being discussed like it was a fixed appointment. I did what any reasonable person would do—I decided to out-stubborn it. Years later, life reminded me that “I’m fine” is not a medical plan, especially when your lungs have their own opinions. If you’ve ever tried to live normally while your body quietly keeps score, this one’s for you.
Some people say we show up on Earth with a pre-approved “lesson plan.” If that’s true, I’d like to speak to the manager—because sarcoidosis has me collecting plot twists like they’re loyalty points. A collapsed lung, then a retina scare, and a front-row seat to how quickly doctors change their tone when you know the language… Let’s talk about the one skill chronic illness forces you to learn: becoming the calm, informed voice in a room full of confident strangers with stethoscopes.