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…
Worth the PHight — Jen Cueva
Jen Cueva lives in San Diego, California, with her husband and mini schnauzer, Zoé. Jen worked in nursing before the script changed upon her diagnosis of pulmonary hypertension (PH), group 1, in 2005. Advocacy has been essential to her life. Her passion is to instill hope and remind others in the PH community that they are not alone. To do this, she serves as a forum moderator for Pulmonary Hypertension News and in her weekly column she delves into the roller coaster of emotions that accompany PH. It is powerful and meaningful to her to have this opportunity to play a role in helping others become more informed and educated so they are more empowered in their journey. Together, we PHight stronger!
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You wake up exhausted. A long night of chest pains and other pulmonary hypertension (PH) symptoms meant you barely got any sleep. Work and daily tasks take monumental effort, or they just don’t happen at all. By the afternoon, frustration sets in. You feel behind and worry about what…
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 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…
“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…
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…
In previous columns, I’ve shared about my ongoing struggle to balance managing pulmonary hypertension (PH) with other health issues like chronic pain. Both conditions require constant attention to ensure optimal health and quality of life. One crucial aspect of living with chronic pain is describing it, which,…
Are you or your partner managing pulmonary hypertension (PH)? Does it make going out on traditional dates difficult? If so, don’t worry; I’ve got you covered. Date nights are essential to any relationship, but they can be challenging with PH and limited energy. That doesn’t mean we have…
I’m often in awe of my body’s resilience. Imagine this: The windows are wide open, a gentle breeze dances through the room, and warm Southern California sunshine filters through the blinds, casting patterns on the floor. On such days, amid the freshness of the air wafting inside, I find…
As the temperature climbs, many of us are itching to soak up some sun and make memories with our loved ones. But if you have pulmonary hypertension (PH) like me, you may often feel too drained to fully enjoy those golden opportunities. Are you torn between the desire to…
My alarm screams at 7 a.m., and in a sleepy rebellion, I hit snooze, chuck my phone aside, and dive back under my covers. I’m gearing up for the day like a warrior preparing for battle, still feeling the echoes of last night’s skirmishes. The relentless ache in my legs…
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