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Living with any chronic illness comes with a financial burden. Hemophilia, in particular, is extremely rare and extremely expensive. What follows is a summary of the expenses, insurance, and savings that I’ve encountered in my journey with bleeding disorders. Expenses Most years, I’m sure to hit the $7,000+…

When my oldest son, Julian, expressed an interest in the theater, with hopes of starting a career in musical theater, I smiled and felt I could be an excellent resource for him. After all, I had a reasonably successful career in the business, having done regional…

I consider myself a high-functioning adult. Living with depression, anxiety, and chronic pain brings quite a few challenges, yet I manage to keep moving. Add my son Caeleb’s bleeding disorder, and life can prove interesting. While managing our chronic conditions, I find that I rarely ask for…

I recently came across the idea that people with disabilities (PWDs) should be held to the same standards as everyone else in terms of productivity and output. As a PWD and an entrepreneur, I wanted to understand the thinking behind this. In a social paradigm that upholds fairness as one…

Last week, I gave in to my 79-year-old mother’s pleas to travel from Florida to the Midwest for a family gathering in Illinois. She is immunocompromised, and I am her caregiver. The pandemic has kept us off public transportation, as she is vulnerable to COVID-19 and any other infection from…

As a pastor, I always remind my parishioners that it’s not enough to profess one’s faith. A person must live out the tenets of what they believe. In other words, talk is cheap. It doesn’t do a person any good to shout their love for God on Sunday and act…

Most women of childbearing age have normal monthly periods. For women like me with bleeding disorders, monthly periods are a “shark week event” with horrific bleeding and pain. The pain made me sweat, shake, and vomit. The severe bleeding had other consequences: I was iron-deficient, anemic, and exhausted. After work,…

I watch my son put pencil to paper and cannot help noticing the change in his face. The tension from just a few minutes ago gives way to peace. The minute he draws the first line on the page, he’s transported into a world that offers him rest and spiritual…

When my kids were little, people reminded me to enjoy my children because they would be in college before I knew it. I never thought much about that sentiment. With both of my sons living with severe hemophilia, I felt like I was going from one thing to the…

To those caring for a spouse or partner with chronic illness: Maybe you knew about your partner’s condition from the get-go. Or maybe they developed a chronic illness or disability somewhere along the road, and you stuck around, ever the loyal companion. You may feel bound by spousal duties…