Online support groups for rare diseases like pulmonary hypertension (PH) are essential spaces that offer people comfort. Patient forums and social media groups also can be places of support. I am involved with the PH News Forums as a…
Worth the PHight - a Column by Jen Cueva
Christmas has come and gone. Didn’t it seem a bit surreal? For me, and I’m sure for many of you, too, last year was unique in more ways than one could imagine. But we made it through, despite the challenges and disappointments that 2020 brought…
Sometimes life refuses to go according to plan. Having pulmonary hypertension (PH) and coexisting illnesses only adds to this. Not that we needed to throw our lives off-balance any more, but it happened. I now have COVID-19. I’ve had symptoms for over a week. The challenge for me, and likely…
“Without you, there would be no me. I am everything reflected in your eyes. I am everything approved by your smile. I am everything born of your guidance. I am me only because of you.” – Richelle E. Goodrich, “Making Wishes: Quotes, Thoughts, & a…
Growing up, Moma would bring Halloween-themed treats to my class on my birthday. Pumpkin-themed goodies and plastic spider rings were among the items she included in each bag. Hyperactive kids bounced around, filling up on all of those sugary gifts. Watching others being happy has always filled my heart. Happy…
After dealing with a pandemic for more than eight months, many in my area are growing restless. I can’t say I haven’t felt the same way at times. But what I find most disturbing is when people pretend that nothing has happened. Hello! We’re still in a pandemic, y’all. On…
I’m lying on a frigid and tiny table that appears to have shrunk since last time. The technician tells me the MRI will take about half an hour. Thankfully, she locates me a nice, warm blanket. I am already freezing and shivering. Finally, my body moves slowly but surely…
“Life is like riding a bicycle. To keep your balance, you must keep moving.” — Albert Einstein After I was diagnosed with pulmonary hypertension (PH), I wanted to live my best life. But because of waxing and waning symptoms, I haven’t pushed my boundaries as much. I have…
Did you know that September was Pain Awareness Month? This year, the U.S. Pain Foundation’s awareness campaign focused on encouraging people to develop a personalized pain management plan. With my pulmonary hypertension (PH) and coexisting illnesses, developing my own pain management plan has been somewhat complicated. But I am…
A while back, I posted in the PH News Forums about my fear of judgment. I wrote about living with PH and feeling like I am being judged. At times, I feel like a reality star. I picture the TMZ crew and paparazzi following me around. In reality, I…
After 15 years with a rare and chronic illness, I have learned much about navigating life and chronic disease. Pulmonary hypertension (PH) is complex and challenging to predict. If you are like me, lacking control over your day is frustrating and anxiety-inducing. But despite those unpredictable days, we…
“Everyone knows they’re going to die, but nobody believes it. If we did, we would do things differently.” – “Tuesdays with Morrie” by Mitch Albom Maybe it is because of my work in hospice care, but talking about death and dying doesn’t bother me. Many others, however, are…
