Columns

Note: This column describes the author’s own experiences with factor replacement therapy. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. It is 10:30 a.m. and I am having my blood drawn. I am doing a trough level test, which…

Lately, I’ve been thinking about what it means to be an expert. In my work as a virtual marketer and strategist, the word gets used all the time. People in my profession are expected to act like we know exactly what we’re doing. We’re told to speak with…

I never used to think about aging because I was too focused on surviving the present: heavy periods, chronic anemia, and endless insurance hurdles. But lately, I’ve started to feel the shift. My joints take longer to recover. Mornings come with stiffness. Even the swelling from a minor finger bleed…

My youngest son, Caeleb, received great news last week from his college, the University of New Mexico: A letter confirmed that he has a dormitory room for school next year. When he showed the letter to my wife, Cazandra, and me, we shouted for joy. Everything associated with our…

I recently stumbled across a passage on social media referring to relationships: “If you want a garden? Take care of it. You want love? Love them.” Something about those simple words struck a chord with me. Instinctively, I forwarded it to my husband, Jared. “This is exactly why I’ve been…

I’ve lived with bleeding disorders all my life. I’ve infused at home, navigated emergency rooms, and advocated for better care for myself and others. But when I was invited to participate in a global hackathon on mental well-being in the hemophilia community, I was struck by something that often…

I recently hosted a retreat for United Methodist deacons from New Mexico and Arizona, where we gathered to share our ministries, develop new relationships, and connect. Deacons are called to serve beyond the church walls, and I’m always amazed at the work we do in the world. At the retreat,…

When I worked for the Hemophilia Federation of America (HFA), I was incredibly grateful for its dedication to bringing awareness to the needs of women with hemophilia, many of whom had a mild form of the disorder. As I observed our community events, I realized that a group was…

I’ve been writing about life with my husband, Jared, who has severe hemophilia B and epilepsy, for many years now. In doing so, I’d often refer to myself as a caregiver in passing. But here’s something that might surprise you: This column is the first time I’m openly…

I was at the Coalition for Hemophilia B’s Annual Symposium this month in Orlando, Florida — surrounded by my community, sharing meals and meaningful conversations — when it happened. No bump. No injury. No accident. I was literally just standing in the elevator when I felt it: a sudden,…