Join me this August in advocating for those who have PH
I’ve said it before, and I’ll say it again (and again): Elected leaders in the United States need to hear from their constituents, which include many of us in the pulmonary hypertension…
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…
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Let’s talk about and normalize sleep apnea
I can see the marks on my face most mornings when I look in the mirror. In my mind, the reddish lines and indentations look like well-worn train tracks. Lately, two small circular markings…
Packing PH lessons for my next trip around the sun
Last month, Father Time strapped me to a rocket ship and shot me clear into the wild blue yonder of my fifth decade. That’s right: This geriatric millennial recently turned 40. I’m launching…
Wrestling with body image and dysfunction during Pride month
When the doctor used the phrase “your deformity,” I immediately braced myself for the remainder of the appointment. I compartmentalized the comment for the moment and would deal with how I felt about it…
Building momentum for supplemental oxygen reform
Do you use supplemental oxygen or know someone who does? We all need oxygen to breathe and to function. But most people breathe without giving it much thought. Yet some in the chronic…
How Hamilton and I ‘wrote our way out’ for World PH Day
I never finished reading Ron Chernow’s biography of Alexander Hamilton. Maybe you’ve read it. Perhaps you’ve seen Lin-Manuel Miranda’s musical based on the book, or heard the music. I’d be surprised to learn,…
The 6-minute walk test brings me a sense of familiarity and comfort
Thirty-eight thousand, seven hundred, and ten feet. That’s the length of about 107.5 football fields, including their end zones. It’s also a ballpark estimate of the distance I’ve walked during six-minute walk tests since…
Support groups for chronic illness are helpful to many, but not me
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…
Mobility accommodations helped me enjoy an early spring vacation
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…
Mental health must be part of the rare disease awareness discussion
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…
How spreading rare disease awareness leads to change
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…
Eating Dark Chocolate While Searching for Good PH Memories
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…
