Columns

My recent columns have focused on my experience at the National Bleeding Disorders Foundation’s (NBDF) annual Bleeding Disorders Conference, held Aug. 21-23 in Aurora, Colorado. I wrote about fun times with colleagues and new friends, and offered my gratitude to salespeople who truly care. I shared that my…

I bought a new mattress and anxiously awaited its delivery. At last, the furniture truck rumbled in the cul-de-sac and stopped in my driveway. Seeing my new, plush, dreamy mattress rolled up like a carpet and crinkling inside its plastic wrap was odd, but I knew it’d soon offer a…

Doubled over in pain, I can barely walk, and just breathing hurts. A tight, squeezing sensation like a vice grip envelops my stomach. I repeatedly call to try to schedule an appointment with a specialist. I eventually set an alarm every Friday to try again, believing that perhaps a squeaky…

When I traveled with HAPLOS, the Hemophilia Philippines Foundation, about six years ago to visit families with bleeding disorders in rural provinces, I expected hardship. What I didn’t expect was how drastically the same diagnosis could play out depending on where and how you lived. My husband, Jared,…

When you live with a bleeding disorder, you quickly learn that the words people use matter almost as much as the treatments themselves. I’ve been called a “carrier” and a “hemophiliac,” and told that my condition was “mild” or “moderate,” as if these words fully described the challenges…

My wife, Cazandra, and I enjoy speaking on topics critical to the bleeding disorders community, as both of our adult sons live with hemophilia. A few weeks ago, we had the chance to lead a seminar called “Telling Our Stories” at the National Bleeding Disorders Foundation’s (NBDF) annual…

Over the years, I’ve expressed my creative side in ways I never imagined possible. The space intended to be the formal living room in my home is, instead, my quilt room. Sewing machines (yes, plural), fabric, colored markers, pens in Mason jars, paper for greeting cards, and brightly colored yarn…

Lately, I’ve been toying with the idea of starting a social media channel that captures slices of my everyday life. On the surface, that might not sound unusual. Plenty of people create online spaces to document what they love, what frustrates them, or what they’ve learned. But for me, the…

When my oldest son was diagnosed with severe hemophilia in 1996, I learned that mostly men have the disease. Rarely did I hear of a woman with hemophilia. The terms symptomatic and asymptomatic were used to classify women who were carriers. If the mother of a child with…

When I was diagnosed with bleeding disorders in the 1970s, the world of hemophilia looked very different. Treatments were scarce, hospital visits were frequent, and the idea of living a “normal” life seemed like a distant dream. Today, I meet children and young adults with hemophilia who’ve never known…