Plan D. That’s what I’m working on now. Last week, I learned that a factor VIII (FVIII) product I’m taking for my hemophilia has had some disappointing results. I can’t say I’m surprised about that, as I had a negative reaction to the medication, including feeling lightheaded and…
Columns
My husband, Jared, has been performing his factor infusions for his hemophilia B for over three years now. In that span of time, he’s learned so much — not just about veins, syringes, and technique, but also about his body and his limits. Infusing factor IX has become…
Recently, I attended the Florida Bleeding Disorders Association’s Women’s Educational Retreat in Hollywood, Florida. I came away with several important takeaways, but one presentation by Lucila Ramirez Donaldson of Genentech truly resonated: caregiver burnout. Many of the women attending were mothers or partners of people living with hemophilia. I’ve…
Despite what appears to be a tranquil season regarding my sons’ hemophilia, I know it simmers right under the surface and could rear its ugly head immediately. For now, life is good. As my wife, Cazandra, and I are moving a couple hundred miles away as we…
In 2000, actor Tom Hanks starred in the movie “Cast Away.” His character, Chuck Noland, traveled the world as a systems analyst for FedEx, and his plane crashed in the South Pacific. He was on a deserted island, and his only connections with the world were the FedEx…
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…
Recent Posts
- 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
- How practicing gratitude helps me cope with my bleeding disorder
- Lower-dose gene therapy effective in severe hemophilia A: Study
- Our family’s travel planning looks a little different these days