Adjusting my sails again with a 2nd case of COVID-19
”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…
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!
Featured Post
Now, more than ever, we must unite for our future
Recent news headlines have sparked significant concern among those of us in the pulmonary hypertension (PH) and other rare disease communities. The massive budget and staff cuts across multiple federal agencies are particularly…
Read more
Can being kind to ourselves improve our health-related quality of life?
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)…
How I manage cold and flu symptoms as someone with PH
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…
The value of learning how to live in the moment with PH
“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,…
Before you try to help someone with PH, know the dos and don’ts
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…
How to protect your kidneys while managing a rare disease
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…
Why I help bring light to the social disparities PHighters face
“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…
My self-care strategy includes ‘no medical talk’ days
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…
Raising Awareness About the Benefits of Clinical Trials
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…
This Year, I’m Learning to Slow Down and Set Realistic Goals
Goals give us direction. They put a powerful force into play on universal, conscious, and subconscious levels. However, those of us with chronic and rare diseases like pulmonary hypertension (PH) often push our…
This Holiday Season, Share Kindness and Gratitude
As we’re in the middle of the holiday season, many people are swiping their credit cards for the perfect gifts for their loved ones. What about those of us in the rare disease community…
Keeping Physical Intimacy Alive, Even With PH
“Intimacy doesn’t have all that much to do with backseats of cars. Real intimacy is brushing your teeth together.” ― author and screenwriter Gabrielle Zevin Feelings of intimacy can help us feel more…
