Winter Is Gushing: My Nose Always Knows When the Seasons Change
The weekend after Thanksgiving, I had a gusher of a bloody nose and one thought: Winter is coming. When the seasons change, I get bloody noses. I feel them coming on like a dog…
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.
Featured Post
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…
Read more
They Say the Gift of Time Is Precious, so What’s a PHighter to Do?
It’s the season of giving, and I’m thinking an awful lot about the precious gift of time. During a recent interview on the “Today” show to discuss his departure from hosting “The…
Going Round After Round, Even When the PHight Knocks Me Down
I’m like a boxer barely holding on in the 11th round, just waiting to hear the bell in the final quarter of 2022. These days, this PHighter is relieved to still be in the…
How Will You Answer the PH Community’s Call to Action?
New research shows an increase in pulmonary hypertension (PH) mortality rates, and we must respond with the force of a dazzle of stampeding zebras. The study, “Pulmonary hypertension mortality trends in United…
The Impossibility of Navigating Automated Phone Systems as a Person Who Stutters
I hate communicating with automated phone systems. I hate that advancing to the next stage of the process to get what I need depends on how the automated program understands the sound of my…
Fleeing Gun Violence With a Disability: An Unacceptable Sign of the Times
Before I could process the sharp sound, people were already sprinting onto the field. I watched in disbelief as spectators jumped over the railings while players scrambled to bring fans off the field into…
Revisiting the Need for Better Disability Representation in TV and Media
As we trade swimsuits for sweaters in preparation for the fall season, many of us look forward to the premiere of new television shows and the return of our old favorites. Growing up, I…
A Yellow Raincoat That Helped Me Process Pandemic and PH Grief
A yellow raincoat hangs in an office window on the same floor as my office. The full-length coat with simple, black buttons looks as though its fibers have never absorbed a single drop of…
Summer Recess Means It’s Time to Talk to Your Member of Congress About PH
School might already be in session for students in some classrooms across the country, but summer recess for members of Congress is just heating up! Every August, members of Congress leave the sweltering swamp…
Air Travel With a Disability: Fitting a Square Peg Into a Round Hole
“This is humiliating,” I said to the security agent waiting for his colleague to arrive to run a test on my portable oxygen concentrator. The agent asked if I wanted to continue the screening…
A Patient’s Perspective on the 2022 PHA Conference in Atlanta
Before my diagnosis, pulmonary hypertension (PH) was a mystery to me. I’d never met anybody who had the disease. Sometimes finding another person with PH is just as rare as the progressive…
Inviting People In After Coming Out
I’ve come out a few times in my life. I came out regarding my sexuality as a member of the LGBTQ community. I’ve also come out as a disabled and chronically ill individual and…
