The toughest part about moving to a new city or state is locating health providers that are covered (most likely) by a new insurance plan. It’s difficult for families with hemophilia, like ours, to find pediatricians and internists. But dentists are by far the most challenging to locate. Fellow…

Living with a chronic bleeding disorder brings a whole new set of words into our vocabulary. Around my house, when it is time to infuse, we say, “Hey guys, its time to get liquored up.” While that may sound odd, our word choices help to remind us that each treatment…

When my youngest son needed daily infusions, keeping up with factor and supplies was not difficult. There was never any question as to when an infusion would take place, and ordering what was needed was the same every month. At one point when his treatment was extremely complicated, each month…

Raising awareness is a delicate task. Sometimes, the most effective way to promote dialogue is with a tool that is considered controversial. I understood this seven months ago when I made a T-shirt that was bound to attract both people who loved it and people who hated it.

I sprained my thumb in my sleep a few days ago. The symptoms point to a condition called De Quervain’s tenosynovitis. An extremely painful sensation runs from my thumb to my wrist joint if I move my thumb in certain ways. Putting pressure on it, as I’m forced to…

I often wonder what my sons feel when they are in the middle of a bleeding episode. Both boys tell me that a bleed into a joint or muscle feels like needles constantly stabbing into the skin. The pain is unbearable and doesn’t let up until a medical clotting…

May is a busy month — with end of school year parties and graduations, the time flies as summer begins. This month is significant for another reason: May is Mental Health Month. It is wonderful that our society talks openly about mental health issues. When I was growing up,…

Many years ago, while working in the association management world, I had a director who challenged his managers (including me) to calculate the “true” cost of every program we proposed. My director’s challenge was not merely a budgetary task; it was an exercise in extreme critical thinking that moved us…

It is no secret that I am a pastor in the United Methodist faith. Many times, I find that having children with bleeding disorders challenges my theology and how I view the world, when considering divine providence over life and the struggles that make us human. I am…

The month of May can be an emotional roller coaster for many. Social media fills up with parents bragging about their children’s latest accomplishments — honor society, college acceptance letters, awards, and recognitions among them. It’s a great thing to have a network for connection and celebration of each…