Columns

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 already struggling to pay for medications and other treatments to improve quality of life or…

Slowly, you begin to ascend. At first, you can’t even see the apex of your destination, so already you’re feeling anxious. As the climb steepens, you feel ambivalent, wanting to brave it out but also wondering if it’s too late to get off this ride. At the top, your stomach…

It’s the season of giving, and I’m thinking an awful lot about the precious gift of time. During a recent interview on the “Today” show to discuss his departure from hosting “The Daily Show,” comedian Trevor Noah said, “Time is the one thing we cannot increase … so…

“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 connected to the people we love. Intimacy is a decision. It’s often a risk, too, because…

“And if the oral antibiotic doesn’t work, they did mention they might want to do an IV antibiotic with a PICC line. But we’ll cross that bridge when we come to it.” My mom reluctantly tacked this onto the end of our discussion. She had been summarizing a conversation…

Selecting a coloring book wasn’t something I rushed as a child. Testing my parents’ patience, I would carefully page through many books until I found the perfect one with the most appealing pictures. I intended to color every drawing in the book, so selecting the right one was important, and…

During a recent drive up a mountainous road to the small, quaint town of Julian, California, I suddenly felt the telltale signs of altitude sickness hit me. The first was a bad headache. We continued driving, though, because my husband, Manny, and I both thought that Julian — which…

I’m like a boxer barely holding on in the 11th round, just waiting to hear the bell in the final quarter of 2022. These days, this PHighter is relieved to still be in the ring. While doomscrolling through Twitter recently, I saw a prompt posted on the Pulmonary Hypertension…

My husband, Brian, was born on his parents’ wedding anniversary. As a child, he disliked sharing his special day with them, but he grew to appreciate the connection. When I informed Brian that November is Pulmonary Hypertension (PH) Awareness Month and National Family Caregivers Month, he noted that…

Four weeks before I entered my freshman year of college, I was being evaluated for a heart-lung transplant due to pulmonary hypertension (PH). Little did I know that I would spend the next four years managing these very separate journeys alongside each other. During this time, I think…

I think of birthdays and New Year’s Eve as self-awareness holidays. People often use these holidays to make resolutions for personal change and better life choices. November is Pulmonary Hypertension Awareness Month. During this time, we advocate for pulmonary hypertension (PH) diagnosis, treatment, and care. With…

My two favorite female singers, Celine Dion and Carrie Underwood, have songs about love and the power it holds. Dion belted out the following lyrics in her timeless classic “The Power of Love”: “We’re heading for something/ Somewhere I’ve never been/ Sometimes I am frightened/ But I’m ready…