All people encounter daily concerns and stresses that affect their mental well-being. Although commonplace stressors are inevitable, they can become overwhelming and lead to emotional upheaval when not managed well. The pulmonary hypertension (PH) community faces these everyday worries, plus the added stress that a rare disease brings.
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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Driving to a doctor’s appointment recently, I pulled up to a red light, where a bumper sticker on a nearby car caught my eye. Framed by purple hearts, it read: “A high pain level day is also a low stupidity, low tolerance day.” As someone managing chronic pain due…
Cooking has always been an enjoyable pastime for me. I believe the satisfaction of nourishing others stems from my Southern heritage. My late grandmother, Mawmaw, as we called her, passed down her buttermilk biscuit recipe to me. Reflecting on this evokes a craving for one, reminding me of the joy…
The spacious wooden table, covered with vibrant sprinkles and pieces of sugar cookies, holds cherished memories of years ago. Our three daughters were gathered around it, the youngest seated in her high chair, all filled with excitement while making cookies and decorating Easter eggs. These festive moments were customary with…
”She stood in the storm, and when the wind did not blow her way, she adjusted her sails.” — lawyer and cancer patient Elizabeth Edwards, from her memoir “Resilience: Reflections on the Burdens and Gifts of Facing Life’s Adversities” Almost three years later, I still haven’t recovered to…
A recent article by Pulmonary Hypertension News reports on a questionnaire-based study in the U.K. indicating that anxiety and depression are likely linked to less self-compassion by pulmonary hypertension (PH) patients and their caregivers. Studies have also shown that depression and anxiety are alarmingly high…
A cold or the flu comes with challenges, especially for pulmonary hypertension (PH) patients. Because we cannot take decongestants, which cause the pulmonary arteries to narrow, we must largely rely on our body’s natural defense mechanisms. But this can be difficult, as we may already be dealing with…
“Your future is created by what you do today, not tomorrow.” — author Robert T. Kiyosaki Life with pulmonary hypertension (PH) is messy and unpredictable most days. Because there’s no cure yet, we in the PH community must learn to live in the now. Tomorrow isn’t promised…
The world is full of opinions, personalities, and attitudes. On my first day of nursing school, our dean told us to treat others as we’d treat our family or loved ones. How would we want nurses to treat them? This stuck with me, as I’ve tried to deal with others…
A rare disease like pulmonary hypertension (PH) is challenging enough to manage. Add other coexisting conditions and it gets even more complicated. I have several coexisting conditions, but my stage 3 chronic kidney disease (CKD) is the most difficult to manage alongside my PH. I must be organized…
“I often wished that more people understood the invisible side of things. Even the people who seemed to understand, didn’t really.” ― co-author Jennifer Starzec, “Determination” Having pulmonary hypertension (PH) can be incredibly isolating. Because the disease is rare, finding others who understand and can relate…
Life with pulmonary hypertension (PH) is overwhelming and exhausting at times. We patients often find ourselves sitting in doctors’ offices, calling about insurance claims, and checking on medication refills. This can be difficult when conversations seem almost always centered on treatments, test results, and the latest PH research.
Life with pulmonary hypertension (PH), a rare disease with no cure, is challenging. The helplessness is compounded by the fact that a solution may exist, but it’s currently out of reach. To get through these emotions, we who have PH rely on faith and hope to motivate…
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