When I make plans to go to a concert, amusement park, or sporting event, my first thought turns to accessibility issues. It’s unfortunate, but with today’s heightened security and limits on what you can bring into a venue, getting in with a medical device sometimes feels like a small miracle.
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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When it comes to scheduling appointments, I say the earlier the better. I love first-thing-in-the-morning physical therapy sessions. The commute is quieter, as my neighborhood and city are still waking up, and the late-summer heat hasn’t yet turned the concrete into hot stones. There’s a sense of accomplishment in finishing…
Summer, to quote Paulette from “Legally Blonde 2: Red, White & Blonde,” “makes me want a hot dog real bad!” When I picture scenes of summers past, I think of family and friends enjoying backyard barbecues, beach bonfires, camping trips, and outings to the ballpark. I can also…
The springtime is when I miss running the most — when the weather starts to warm a little and folks lace up their shoes, go outside, and get a boost of endorphins. Save for one scary moment in 2021, I don’t run anymore. Not since I left the hospital…
Eight years ago, I meant to bid winter adieu from an all-inclusive beach resort. Instead, I welcomed spring from a hospital bed. I went on a trip — that’s for sure — just not the relaxing and restorative one I had imagined. There were no drinks with little umbrellas for…
In her classic 1990s song “Ironic,” Alanis Morissette sings about spoons. Describing life’s little ironies, the Canadian singer proclaims, “It’s like 10,000 spoons when all you need is a knife.” Hey, if Morissette doesn’t need any of those spoons, I’d be more than happy to take a few…
Do you know about pulmonary rehabilitation? Maybe you’ve participated in a few sessions or you have a loved one who did. I didn’t know about these programs until after I was diagnosed with pulmonary hypertension (PH). I also didn’t fully appreciate the hurdles that prevent some people…
Former “Grey’s Anatomy” star Katherine Heigl cracked a joke at the Emmy Awards ceremony that I can’t get out of my head, and not because it was particularly funny. Commenting on the show’s legacy during a reunion bit with former and current cast members, Heigl said, “Yes, there have…
While most people who home in on their health at the start of a new year think about gyms, diets, and a “Dry January,” I’m focused on my oxygen levels, doctor appointments, and exams. These are needed to manage my pulmonary hypertension (PH), something I’ll be committed…
When you struggle to breathe, yet fail to understand why, it can feel like you’ve lost your way in a dark wilderness. It’s scary and isolating, and you have nary a map, flashlight, or proper diagnosis to help find a lighted path out of the woods. I saw my…
While I take a fair amount of medication to manage my pulmonary hypertension (PH), sometimes the hardest pill to swallow is admitting when I fall short with my treatment plan. Earlier this month, I was at a restaurant sharing a meal with an old friend I hadn’t seen…
Do you have trouble relaxing? That might seem like a silly question given that summer vacations are in full swing. But I’m asking because of my own ongoing quest to better relax as part of my treatment plan for pulmonary hypertension (PH). Long before my PH diagnosis…
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 (PH) community. The doldrums of August is the perfect time to connect with your members…
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