Columns

This Holiday Season, Share Kindness and Gratitude

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…

Keeping Physical Intimacy Alive, Even With PH

“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…

My Recent Procedure Shed New Light on Old Medical Trauma

“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…

The Colorful Mosaic of a Thankful Caregiver

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…