Columns

Hitting frustrating roadblocks when my symptoms are dismissed

Throughout my 18-year journey with pulmonary hypertension (PH), I’ve unfortunately had many experiences where doctors have brushed off my symptoms. I was once admitted to an intensive care unit where healthcare providers dismissed my hyponatremia, or low sodium levels, assuming it was simply a side effect…

Building momentum for supplemental oxygen reform

Do you use supplemental oxygen or know someone who does? We all need oxygen to breathe and to function. But most people breathe without giving it much thought. Yet some in the chronic illness and disability communities need a little extra help to ensure that oxygen flows throughout their…

Together we can be a powerful force to manage anxiety

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.

How I manage an overwhelming amount of medical supplies

In my childhood home, we didn’t have a coat closet. Or, to be more specific, we did have a coat closet, but the space was overtaken by a higher priority. Instead of holding winter jackets, it was packed full of medical supplies. A tower of mismatched storage bins and cardboard…

My top cooking tips for the days when PH saps my energy

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…

How Hamilton and I ‘wrote our way out’ for World PH Day

I never finished reading Ron Chernow’s biography of Alexander Hamilton. Maybe you’ve read it. Perhaps you’ve seen Lin-Manuel Miranda’s musical based on the book, or heard the music. I’d be surprised to learn, however, if the book was in your hospital discharge bag, as it was in mine after…

How my friend and I bond all the more because of our rare diseases

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…

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 and Gifts of Facing Life’s Adversities” Almost three years later, I still haven’t recovered to…

A Conversation With Rare Disease Advocates