Columns

Letting a doctor go can feel like a radical act, especially when, like me, you live with a lifelong bleeding disorder. Many of us are taught, implicitly or explicitly, to be grateful for any care we receive, to avoid rocking the boat, and to trust that the person with the…

“Long-sleeved shirts,” I say to my younger son, Caeleb, as we run down the list of things he will need for his dorm room. “Check,” he replies. “How about pants, deodorant, toothbrush, wheelchair, cane, Hemlibra [emicizumab-kxwh]?” He confirms he has everything packed and ready to go. We continue packing,…

Out-of-pocket maximum: This term is used by health insurance companies to inform customers of the maximum amount they may have to pay in a year for covered medical care, excluding premiums. Once this maximum is reached, the insurance plan covers 100% of eligible medical expenses for the rest of the…

During my husband Jared’s recent hospitalization, I heard one particular sentence more times than I can count: “We’ll wait for Doc’s approval.” Jared was admitted for a burn on his hand, an injury that, on its own, often follows a fairly standard treatment path. But because he lives with…

Last year was a year of conferences for me — at least 10 by my count. It still amazes me that, in the hemophilia community, thousands of individuals and families are able to travel and attend these events at little or no cost, thanks to the support of event…

I often tell people that my mind is a dangerous neighborhood and that I should never venture into it alone. This usually gets a laugh, which the comic in me appreciates, as I often say it to lighten a difficult conversation. A little release of tension doesn’t hurt anyone. But…

My husband, Joe, and I recently officiated a marriage vow renewal for close friends in Santa Fe, New Mexico, one of our favorite places. We made a long weekend of it, spending time with friends, meeting new people, and enjoying each other’s company. The next morning, we had breakfast at…

When people learn that their loved one has hemophilia, they often jump straight to a mental checklist of risks: bleeding, injuries, factor, emergency plans. Safety becomes the headline. Over time, it can become the lens through which every choice is evaluated. But for many people…

I wasn’t doing anything unusual when it happened. I wasn’t exercising, rushing around, or kicking someone. I was simply walking around my house when I felt a sudden, sharp pain in the ball of my foot. Within seconds, it began to swell. A bruise appeared, purple, unmistakable, and completely uninvited.

The world often feels like an amusement park ride that does nothing but turn in circles, and we must gather the courage to get on. At first, everything spins at a moderate pace, but as the ride continues, the pace picks up, and suddenly everything spins so fast we can…