The Struggle to Feel Seen and Heard With Sarcoidosis
Can you hear me? Do you see me? I repeat these two phrases at least 10 times a day. I think it’s common for folks living with chronic health issues to ask people these questions. I don’t know…
Can you hear me? Do you see me? I repeat these two phrases at least 10 times a day. I think it’s common for folks living with chronic health issues to ask people these questions. I don’t know…
I was in my 40s when I entered a neighborhood gym for the first time. I slunk over to the least-crowded row of treadmills, and still couldn’t shake the feeling of being watched. Until then, my huffing and puffing had been done in private. But after my treadmill died, my…
“Grace means that all of your mistakes now serve a purpose, instead of serving shame.” – Mike Rusch For the past few days, I’ve felt like I’m missing something — or maybe that I’m missing out on something. I keep telling myself that I have…
Envy is a terrible thing. But three months into the year, I can no longer shake it. I thought I’d be an early candidate for protection against COVID-19 because of my sarcoidosis and asthma. But I’ll be among the last eligible in Pennsylvania, which as of this writing…
At this time last year, I was in the hospital. I spent three days there, including during my son’s birthday. During that time, my primary pulmonologist broke the news to me that I didn’t qualify for a procedure I was looking to have at this…
I view my biological clock as a stubborn, old mule. She dictates her pace, and getting her to change is hard. Real hard. She wants no part of the foolishness known as daylight saving time (DST). But the U.S. is among fewer than 40% of countries worldwide that…
We sat just a few feet apart, trying to figure each other out. He jotted down his clues, and watching him closely, I looked for mine. Given that fewer than 200,000 Americans have sarcoidosis, which qualifies it as a rare disease in the U.S., it wasn’t a mystery he often…
I know playing “what if” is a useless exercise when it comes to sarcoidosis. But during a four-day stint without cellphone coverage or internet access, I found myself doing it anyway. This disease has many scary aspects, such as cardiac involvement, which I wrote about earlier this month. And…
Many call it “heart attack snow.” It’s heavy. It’s backbreaking. Last week, we went head-to-head. In “Terminator” terms, the snow was the advanced T-3000 cyborg. I was “Pops,” the old T-800 out to prove I wasn’t obsolete. I’m used to sarcoidosis putting me through the wringer emotionally. But fluffy…
My physician’s index finger slid across the X-ray, briefly stopping in areas to indicate the foreign presence in my lungs. I had pulmonary sarcoidosis. And for the next 14 years, I would have regular examinations for my pulmonary health without ever knowing that my heart could be at risk,…
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