Spending a Holiday in a Hospital Bed and other Spring Reflections
I’ve been quiet in this space for longer than I intended to be. Call it writer’s block or an exceedingly busy work schedule or no particular reason, really. I just didn’t put…
PHighting Words — Mike Naple
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.
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How PH taught me the importance of listening to my body
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…
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PHighting for Rare Disease Awareness on Feb. 28
“It’s about the journey, not the destination,” is an oft-quoted phrase that is meant to remind us to be in the present and savor the special moments along the way, instead of…
Bouncing Back from a Checkup’s Mixed Results
The paper crinkled beneath me as I sat on the edge of the exam room table while waiting for my pulmonary doctor. I was at the hospital…
PHighting Beyond Life Expectancy
Life expectancy is on my mind. Maybe it is because we are in the new year. Maybe it is my impending doctor’s appointments and tests that will update me on the progress…
Why Setting Goals Is Part of My New Normal
I cannot believe 2018 is already upon us. I don’t know about you, but 2017 has felt like one ongoing, never-ceasing stress test. For many reasons. I have never been a big…
The PHun Side of Anger
I’m going to get this out of the way. There is no fun side of anger, regardless of how you spell it. I never considered myself an angry person. I saw myself as…
Aware, Rare, and Advocating for PH Year-Round
The other night I sat in my small living room as an episode of “The West Wing” played in the background. I probably was writing something or other, not giving the…
Showing Gratitude and Perseverance While Living with PH
I’m going to be honest with you, readers. I didn’t want to write this column. I was sure I lacked the bandwidth to do it, to write it in a manner that…
Peeling Back the Layers of Chronic Illness
On a recent rainy fall day in Washington, D.C., you could find me in my small kitchen apartment cooking up a hearty beef stew. I prepped all the vegetables — the carrots,…
Why I PHight: Raising Awareness This November
Did you know that I have a new appreciation for street corners? I remember when I would attempt to cross the street as a red No. 2 flashed into a blinking hand,…
Unreliable Narrators and My ‘Tell-Tale’ PH Heart
As the seasons change and we inch closer to Halloween, I have found myself reading the works of the great gothic writer Edgar Allan Poe, and am captivated by “The Tell-Tale…
PH’s Not-So-Invisible Cloak
It was like any other morning commute. Stand on the platform with crowds of people, all waiting for the delayed metro train, a more-than-common occurrence in Washington, D.C. When the train arrived…
