In the world of chronic illness, medications can be many things. At best, they’re a blessing, but more often than not, I’ve found them to be a necessary evil. While living with pulmonary hypertension (PH) for 19 years, I remained on a fairly consistent medication regimen. My doctors…
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Do you ever feel like a fraud because of your rare disease? For the past two decades while managing pulmonary hypertension (PH), I’ve battled self-doubt, shame, and feelings of inadequacy. I know I’m not alone. We all face these emotions at different points in life, and through conversations with…
I have pulmonary hypertension (PH), which is difficult to manage, but it doesn’t affect only me. It also affects the people closest to me, including my husband, Manny, who is my rock. Unfortunately, living with a rare disease can strain a marriage at times. When that happens,…
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.
When health issues strike, they can be devastating, turning your world upside down in an instant. You can’t just wish away a rare disease like pulmonary hypertension (PH); its future impact is a daunting unknown. Last week, I had an “aha!” moment with my young adult daughter, Kayla,…
Living with a rare disease like pulmonary hypertension (PH) presents unique challenges. Balancing work, your personal life, and your health can feel overwhelming for both patients and their caregivers. If you find yourself struggling to balance work and life with a rare disease, please know that you’re…
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…
Since May, I’d been faced with a challenge familiar to many women: finding the perfect dress for a wedding. Two close friends of mine were married last weekend, and I had the honor of attending the wedding and reciting original poetry during the ceremony. After my heart-lung transplant in…
“Never get a chronic illness; it’s really inconvenient for other people.” I stumbled upon a meme with this quote while scrolling through social media last week, and, wow, did it hit home! Can you relate? As someone managing pulmonary hypertension (PH) and other health conditions, I found this…
As I opened my email inbox, a headline instantly caught my eye: “Massive heat wave heading for USA next week.” This got me thinking about how heat affects those of us with pulmonary hypertension (PH). Here in sunny San Diego, many in our PH community are bracing…
The approach of summer always catches me off guard. For about six weeks between May and June, I can’t avoid keeping a packed schedule. Along with several holidays and birthdays, including my own, this period also marks the beginning of my busy season working as a photo editor. In…
With warmer months on the horizon, many of us eagerly await the fresh fruits and vegetables they bring. I’m one of those people who can’t wait for the fresh produce season. It benefits the pulmonary hypertension (PH) community, too, as we’re often advised to follow a heart-healthy…
