Order Up: Coffee With a Side of Diuretics to Manage My Fluid Intake
What is better than the smell and taste of a freshly brewed cup of coffee? Maybe a second cup of coffee? Maybe like me, you find comfort in the simple routine of your morning…
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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Navigating the Stairs and Stares of Life With PH
Have you ever seen the view from the top of the Lincoln Memorial in Washington, D.C.? Maybe you saw the monument during a family or school trip, or perhaps a visit to the National…
Where My PH Diagnosis and Disability Identity Intersect
I haven’t always identified as disabled, even though I lived with disability long before my initial pulmonary hypertension diagnosis in 2016. Adjusting to life with a chronic illness that affects breathing awakened a…
‘Christmas in July’ Gives Me the Energy to Get Through 2021
Deck the pool chairs. Fire up those outdoor grills and Hallmark movies, because we’re celebrating Christmas in July! You might view this as an odd way to start a column, especially considering the…
Treatment Cost Worries Make It Harder to Focus on My Health
Living with a chronic illness or rare disease definitely comes with a price tag. There are added expenses related to medical equipment and devices, doctors’ appointments, tests and procedures, and of course, the cost…
Reflecting on Accessibility, Ableism, and Chronic Illness During Pride Month
Pride Month, observed each June, is a time to celebrate LGBTQ history, community, and life through events and parades. Curiously enough, I marched in my first Pride parade years before I had the…
Instead of Climbing the Ladder, I’m Searching for a New Path With PH
We’re taught to climb ladders. When I played Chutes and Ladders as a kid, I always wanted to land on a ladder because it meant advancement — one step…
Revisiting ‘PHighting Words,’ 5 Years After My Diagnosis
“Where do you see yourself in five years?” This is one of my least favorite questions during job interviews, and I hated it even more when I would catch…
An Invisible Illness and the PHight of Our Lives
Wonder Woman has an invisible jet. Harry Potter has an invisibility cloak. I have an invisible illness. The people I sit next to on the metro cannot see it. Members…
Using the Muppet Theory to Explain Anxious Episodes
Are you a Grover or a Bert? A Cookie Monster or a Kermit the Frog? You’re probably wondering what Muppets have to do with my journey living with PH. Stay with me.
An Open Letter to My Newly Diagnosed Self
In June, I attended my first Pulmonary Hypertension Association Conference in Orlando, Florida. Sitting in a packed ballroom full of strangers, I had never felt more seen. Many of the faces…
Raising Awareness: What Does a PHighter Look Like?
“Do you wear glasses?” The question took me completely off guard. I was standing in line at my local breakfast spot and staring the cashier in the face, wondering if I did,…
