Some people might describe me as the type of person who regularly says no to something before coming around to a yes. This might apply to support groups, as I usually don’t join them. Don’t get me wrong, I’m glad they exist for people with rare diseases like…
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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A decade later, I still remember standing in the kitchen on a phone call that would change my life. On that morning in March 2016, I left my apartment and returned nearly two weeks later with a pulmonary hypertension (PH) diagnosis. I never thought I’d reach this milestone: living…
It’s officially spring! Flowers bloom, rain falls, and allergies flare as we begin to emerge from our collective hibernation. Before formally springing forward, I took a vacation to Florida where I spent a week visiting different amusement parks, and my comfort level with asking for and using disability accommodations reached…
Mental health stigma can feel sharp, like a splinter in your thumb or a paper cut. The stigma is so powerful that it can bar those newly diagnosed with rare diseases or chronic illnesses from seeking out the treatment they might need. After my pulmonary hypertension (PH) diagnosis in…
I love breakfast burritos. When I lived in California, it wasn’t uncommon for me to go on breakfast burrito runs with co-workers or while hanging out with friends over the weekend. I don’t know what it is about this magical food — maybe it’s the hot sauce — but there’s…
I love dark chocolate: the complexity of the rich flavor, the bittersweet notes of cacao. Some say that dark chocolate is an acquired taste, not for everyone. As I write this column, I’m indulging in a square of hazelnut and coffee-flavored dark chocolate and thinking about memories. The chocolate was…
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 sensing a forthcoming storm before we mere humans feel a drop of rain. During the worst…
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 Daily Show,” comedian Trevor Noah said, “Time is the one thing we cannot increase … so…
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 ring. While doomscrolling through Twitter recently, I saw a prompt posted on the Pulmonary Hypertension…
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 States 1999-2019,” published in the Annals of Epidemiology and the topic of a recent Pulmonary…
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 voice and the cadence of my words. I hate the way I feel when the stutter…
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 the safety of the dugout. As the chaos unfolded and more people reacted with fear at…
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 would devour entertainment magazines dedicated to previewing the fall television and film lineups like popcorn. I…
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