My husband, Jared, and I have been binge-watching “House” lately. Watching this mid-2000s medical drama as a couple living with chronic and mental illness is a fascinating experience, since we’re no strangers to hospitals and medical procedures. One of the episodes we found compelling featured a…
Columns
Navigating social media for information about hemophilia and other health issues can produce mixed results, but amid the noise are shining beacons of knowledge and support. In honor of Bleeding Disorders Awareness Month, which is now coming to an end, the following are five exceptional social media accounts…
Last Friday started like any other day. I felt excited that I’d survived my first week back at work after an incredible vacation in Washington, D.C. I began to prepare a mental schedule to order my day. As I thought of the many things around the house that needed my…
I vividly remember the playground at Our Lady of Fatima Catholic School in Galena Park, Texas. The monkey bar dome was the place for the risk-takers, who climbed to the top and faced the ground. I preferred the swings, which catapulted the brave ones as they flew off in a…
I’ve always had a naturally good “firefighter mode.” As a child, I was inventive and resourceful. If I accidentally left my homework at home, I could do it over in minutes. In high school, I was the go-to person for completing group projects under pressure. This pattern continued well into…
Note: This column describes the author’s own experiences with Mounjaro (tirzepatide). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. In a previous column, I shared my journey of embarking on a weight loss program using the type…
After I had spent a few days lobbying legislators in Washington, D.C., my youngest son, Caeleb, joined me for some much-needed time together. I met him at the airport to start our madcap adventures. He was in a wheelchair due to chronic pain from numerous spontaneous bleeding…
It’s infusion day again! Pens, inks, and assorted notebooks leave our bedroom work desk to make room for a makeshift medical setup. Medicine vials, alcohol swabs, and needles take their place. For my husband, Jared, who lives with severe hemophilia B, this is more or less a monthly routine.
Last year, I had the privilege of connecting with Jeanette Jones, a former education manager at the Hemophilia Federation of America. During our conversation, she graciously guided me through a period tracker toolkit that she played a pivotal role in developing. Jeanette is a passionate advocate for…
Last Thursday, I visited Washington, D.C., to join my fellow blood brothers and sisters in lobbying legislators regarding issues that directly affect the bleeding disorders community. I must admit that I was a little nervous. Several times, I wondered, “What in the world am I doing here? I’m only…
Recent Posts
- What the years of raising sons with hemophilia have taught me
- Scientists screened thousands of molecules to develop Hympavzi
- Who gets to tell the hemophilia story?
- I advocate so the people in power hear from someone affected by hemophilia
- I miss being my sons’ advocate, but am proud of their independence
