Have you ever felt as though God or the universe was reaching out to offer you comfort? Whether you pray to Jesus, Allah, Adonai, or honor the gifts of Mother Earth, being in tune with your spiritual self can be a profound source of solace during the challenges of living…

I’ve written before about not seeing myself as a caregiver in the traditional sense. For us caregivers, hemophilia doesn’t usually demand round-the-clock care. My husband, Jared, manages his condition independently. He infuses. He monitors his body. He makes decisions about risk and rest. My role on most days is…

January is supposed to feel like a reset — a clean slate and a fresh start. But for people with bleeding disorders, it often feels like the opposite. Prior authorizations expire. Deductibles reset. Insurance coverage shifts. Nothing about my medical reality changes, but suddenly, everything about access to care feels…

“We are uncomfortable with you around and struggle to be in your presence. We find that you talk too much and are self-centered. When you hosted dinner, you made us eat in an insulting location we did not like,” the person said. Defending myself, I said, “I am so sorry,…

A voice memo appeared in a text from one of my hemophilia mom friends. We usually see each other at national meetings or on social media, but we don’t talk much outside of that. She’s one of the coolest women I know, so I always wonder why we don’t…

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,…

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…