Unless you live with a chronic illness or care for someone who does, it isn’t easy to wrap your head around how much time it takes to manage a disease. A few months ago, I asked members of our Pulmonary Hypertension News Forums, “What makes your health a…
Worth the PHight - a Column by Jen Cueva
As I debated what to write this week, I struggled for days. Continuous brain fog makes the decision difficult more often than not. My brain fog presents as lapses in memory, in which I forget what I was saying or other simple tasks. The icing on the cake is…
When I describe my pulmonary hypertension (PH) as stable, many think it means that I’m in remission. They don’t comprehend that, while my numbers may be stable, I still have PH. I continue to experience symptoms, require oxygen, and PHight daily. Those of us with rare, chronic illnesses celebrate when…
Last month I struggled with my mental health more than usual. My anxiety was out of control. I recognized that I needed more help and went to see a psychiatrist my primary care physician had suggested a few times. She ordered a few medications at a low dose. But…
After my bloodwork a few weeks ago, I stopped by a local 7-Eleven to grab an iced coffee. I parked and went in. An older man came in behind me and said, “Do you know you’re parked in handicapped? You’ll get a ticket.” I turned around, oxygen cannula and all,…
Last month, I lost a friend within my rare disease community, pulmonary hypertension (PH). PH continuously takes with no regard for anyone or anything. It wasn’t the first time and won’t be the last time I’ve lost, but it hurts. Since my PH diagnosis 17 years ago, I’ve…
Lately, I’ve realized I’m in a funk and don’t know how long I’ve been going through this season of my life. I feel overwhelmed. But is it connected to my cross-country move last year? Or perhaps I continue to struggle after recovering from COVID-19. I…
As I searched for a new primary care physician (PCP) in March, I learned that finding my new healthcare team after relocating across the country would prove challenging. The first potential candidate spent three hours going over my medical background with me, only to inform me that my health…
Life after a pulmonary hypertension (PH) diagnosis is stressful. As a Type A personality, I’ve often defined my worth by my productivity. But since my PH diagnosis, I am now working to prioritize my health. We live in a society that praises productivity. Hustle culture is encouraged across social…
My husband, Manny, and I celebrated our 30th wedding anniversary in March. If you know anything about my pulmonary hypertension (PH) journey, you know that 17 years have been with PH. That means that Manny has shared me with PH for over half of our marriage. Although I’m grateful…
It’s no secret that life turned upside down for my family and me when I was diagnosed with pulmonary hypertension (PH) in 2005. But my life was far from over; I still craved so much. My chronic illness may prevent me from achieving goals I once had, but I can…
Patient advocacy is a broad term covering many topics, and the concept leaves many confused. Those of us in the pulmonary hypertension (PH) community must educate ourselves about it. In this column, I primarily refer to self-advocacy and briefly touch on systems advocacy. To me, self-advocacy means making my…
