“Don’t let anyone cut into you without talking to your hematologist first.” That’s what my hematologist told me decades ago, and I’ve never forgotten it. It’s advice that may have saved my life more than once. For people living with hemophilia, von Willebrand disease, or rare factor…
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The kitchen buzzed with energy. Cookies were in the oven, a skillet of deliciousness simmered on the stove, and fresh tortillas were being rolled out on the counter. When my oldest son, Julian, and I cook together, we’re like Fred and Ginger, knowing each step and anticipating…
Forty-six. That’s how old I was when I finally accessed the hemophilia care that I’d needed my entire life. I believe the reason it took so long was that I’m a woman. It may seem crazy to those who aren’t familiar with the bleeding disorder. For years, the misconception…
My husband, Jared, and I both have marketing backgrounds. We’re used to thinking in terms of value. In branding, you ask: What makes this product worth noticing? What problem does it solve? Why should people care? It’s strange to apply that mindset to something like hemophilia. But when you…
A few years ago, I woke up to find my right breast swollen, hot, red, and extremely painful. Beneath the skin was a lump that felt about the size of a golf ball. I’d had mastitis before, in the other breast, so I wondered if this pain could be…
To say my youngest son, Caeleb, is excited to start his second year at the University of New Mexico is an understatement. He lived at home during his freshman year, but next month, he’ll move into a dormitory. He can’t wait to spread his wings and live on his own(ish).
Helping people brings me joy. As a hospice chaplain assisting families through their darkest hours, I am truly fulfilled. Outside of my work, my heart is full when I can make dinner, pick up groceries, or visit a friend. But asking for help is an entirely different thing. During my…
It’s never easy to talk about weight. Like many people, my weight has wildly fluctuated throughout my adult life, sometimes by as much as 60 pounds or more. I’ve struggled to find a happy medium between healthy food choices and enjoying the occasional indulgence. I haven’t been in tip-top shape…
The other day, I found an old document from my husband Jared’s last hospital stay — the one after his freak accident on a pool slide. I’d written about it before, but seeing the discharge papers brought it all back. The memory feels a little funny to us now…
A few weeks ago, I spent a long weekend at a women’s retreat hosted by the Coalition for Hemophilia B in Stone Mountain, Georgia. Years ago, I attended the iconic laser show at Stone Mountain and have always wanted to return. I was thrilled to find out the show was…
Recent Posts
- Little interest in gene therapy for many with severe hemophilia: German study
- With bleeding disorders, how do we know when pain isn’t ‘just pain’?
- 17-year-old advocate shares her NMOSD story to raise awareness
- Accommodations won’t keep us from enjoying a day at the museum
- I unpack the past with hemophilia and discover the strength of my adult son