I love making quilts. Some people wonder why anyone would buy new fabric just to cut it up and sew it back together. It might sound odd, but for quilters like me, creating something by hand brings comfort, joy, and satisfaction. There is a rule when preparing to make…
Columns
Parenthood is full of surprises. Some are delightful, some are exhausting, and some are completely unpredictable. Add hemophilia to the mix, and everything becomes a little more complicated. Over the years, I’ve learned that balancing relationships, parenting, and a chronic condition is not about perfection. It is about understanding…
The first of my four alarms sounds at 6 a.m. Groggy, I roll over to turn it off, knowing I have 15 minutes until the next one goes off. I am a night owl and often let time slip away, crawling into bed after midnight. The next morning, I pay…
The start of a new year often brings talk of ambitious goals, including growth, progress, and milestones we hope to achieve by year’s end. My husband, Jared, and I have those goals. In fact, we’re approaching 2026 with a specific list of things we want to build, maintain, and improve…
In a previous column, I shared Tara Blakely’s journey to earning a black belt — an accomplishment nearly 30 years in the making, interrupted by life, motherhood, undiagnosed hemophilia, and everything in between. Impressive, certainly. I was equally impressed by her 110-pound weight loss. I’ve struggled with my…
Planning for what happens after I die is such an uncomfortable topic that I want to run and hide. Somehow, just thinking about death makes it feel more real, even though I should have years of life left. Yet, I know that hemophilia A makes my life more fragile.
Living in the Philippines has shown me how differently people understand illness depending on where and when they grew up. In many rural provinces, even something as common as high blood pressure gets mismanaged. Doctors may not have specialized training. Medical equipment is scarce. And reliable health education often depends…
I have a bad habit. When I shop for groceries, I grab what I need but often get distracted by a bright package. A new cookie? How many carbs are in it? The same thing happens when I watch a movie or listen to a podcast with lots of twists.
What would you rather do: have a day to relax all to yourself, or eat whatever you want and not gain weight? Many of us have seen memes asking similar questions. To be honest, until this summer, I would occasionally answer them without much thought. But after facing struggles with…
When fellow columnist G Shellye Horowitz asked me to travel to Houston to support her through surgery for superior mesenteric artery syndrome, I didn’t hesitate. I knew I needed to be there. She told me I was the perfect choice because I understand hemophilia, its treatment,…
Recent Posts
- China’s first hemophilia B gene therapy now approved in Macao
- My husband still experiences seizures from a childhood brain bleed
- 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