Mike Naple (he/him) lives in Washington, D.C., but calls San Diego, California, home. Mike was diagnosed with pulmonary hypertension in 2016. He also manages living with interstitial lung disease, sleep apnea, scoliosis, and a stutter. These chronic conditions are mostly invisible except for when Mike uses oxygen therapy while engaged in rigor exercise or activity. Mike is a public affairs and communications professional who still works full time. He is excited for readers to join him as he navigates the intersections of disability, chronic illness, rare disease, public policy advocacy, and living with PH.The pain caused my right knee to seize with every step. As I moved through the Indianapolis hotel room that morning, the day’s busy schedule simmering in the back of my mind, I knew I had to listen to…
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When somebody asked me how I was feeling a few weeks ago, I responded, “Well, I feel like Stretch Armstrong being pulled in too many directions.” Do you remember the action figure toy Stretch Armstrong? You might need…
I often remark that being diagnosed with pulmonary hypertension is like walking into a “PHun house.” Open the door, and everything you’ll see in the mirrors will appear distorted, out of proportion, unfamiliar, and scary. Strange and uncomfortable things…
There’s a scene in Disney’s classic animated film “Aladdin” in which the evil sorcerer Jafar transforms into a snake and squeezes Aladdin within an inch of his life. As a kid, I found this scene rather frightening. As an…
The hallway felt cold despite the extra blanket the transfer specialist gave me before moving me in my hospital bed. We headed to another wing of the building for yet another test. I waited in a dimly lit hallway…
“I wish I could help you. I know how tough pulmonary hypertension is and what you’re going through — there just isn’t enough supply of the antibodies treatment.” That was the gist of what a doctor told me while…
When I checked into urgent care in 2016, I was supposed to be preparing a member of Congress for a summit at the White House. But instead of going to work the next day, I sat in the hospital…
The pandemic has been especially hard on people with disabilities, chronic illness, and rare diseases. Our community has faced ongoing ableist attitudes toward safety measures and protocols meant to keep disabled, immunocompromised, and other high-risk individuals protected from…
It turns out that National Cat Herders Day is an occasion people celebrate. Observed on Dec. 15, it’s a day to recognize people who achieve the impossible as part of their jobs or positions, and do…
The tightness creeps up in my lungs just as I’m about to make up the bed with a second clean sheet. I pause to catch my breath and wonder how unfolding a piece of fabric can make…
Something unexpected happened while scheduling my next quarterly checkup: I was told my lung specialist is leaving and will no longer be part of my care team for pulmonary hypertension (PH). This caught me a bit off guard. I…
I’m grabbing the megaphone to raise awareness and advocate for pulmonary hypertension (PH). And I invite you to join me. Through advocacy, we’re able to make changes in the United States’ democratic system of governance. I believe change begins…
I’ve always considered myself an “on” person, somebody who says yes to the boss or co-worker, friend or relative, thing or event asking for my attention and energy. I’m like a faucet running all the time, never slowing down…
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