Those of us in rare disease communities have learned one lesson particularly well: We all must listen to our bodies. That’s why a celebration like National Relaxation Day — which happens to be Aug. 15, the day this column was published — is such an apt reminder. Many will…
Columns
“Why am I so tired all the time?” If you’ve ever thought that while managing your pulmonary hypertension (PH), you’re not alone. Fatigue is a well-known PH symptom that often goes unaddressed. In my experience, sleep plays a factor in my fatigue levels. Despite getting what I thought was…
My body allows me to do many things on some days, and not much on others. Because I never know which days will be fair to partly cloudy, making it to appointments and keeping plans with friends is like hitting a bull’s-eye on a dartboard while wearing a blindfold. I…
Philosopher George Santayana famously said, “Those who cannot remember the past are condemned to repeat it.” This means that if we don’t learn from our mistakes and the mistakes of others, we may continue to make poor choices. But if we use our failures as opportunities for growth, we claim victory…
While talking with some friends recently, we ended up discussing our college majors. My mom had encouraged me to study literature, writing, or something similar, but after a lifetime of being closely tied to the healthcare system with my pulmonary hypertension, I was determined to pursue a career in…
Hormone replacement therapy is often used to manage symptoms of menopause, but for those of us with conditions like pulmonary hypertension (PH) and congestive heart failure, it’s not so simple. The risks of hormone replacement therapy potentially worsening our fragile cardiovascular and renal systems make it a no-go for…
I’m tired of being lonely, and I’m lonely because I’m tired. The best time to write about this would have been July 11 for Cheer Up the Lonely Day, but that opportunity came and went with my dreams. I surreptitiously fell asleep and missed my deadline. Loneliness and…
We all want to feel a sense of belonging and connection. The tricky part is learning that we can’t force a genuine connection; it has to find us. Real human connection comes with shared dreams or experiences and is often filled with intense emotions. I didn’t find a sense of…
When I got my driver’s license at 16, my parents mentioned that I might benefit from handicapped parking, given my pulmonary hypertension (PH). But despite my poor tolerance for walking distances at the time, I didn’t even entertain the subject. A parking permit — a blue tag that…
Managing pulmonary hypertension (PH) for 20 years has not only shaped my life, but it’s also allowed me to connect deeply with a resilient and inspiring community. Over the years, I’ve witnessed firsthand the strength of patients and caregivers who come together to support one another, champion awareness, and…
Earth spins at approximately 1,000 miles per hour and orbits the sun at a mind-blowing 67,000 miles per hour. Doesn’t it feel like life on this planet picks up speed each year, as if we’re all trying to live faster than the world can turn? There are places to be,…
As an avid reader who lives with a chronic illness, I’ve always looked for stories to which I could relate. When I was a teenager, I read “The Fault in Our Stars” by John Green, which followed the life of a 16-year-old girl with terminal cancer. It was…
