Sometimes I feel like I don’t belong. I’m a misfit, an imposter. I feel fine and haven’t had a bleed in almost a month. Do I really have hemophilia? Do I really need to infuse every three…
Grab the factor, syringes, butterfly needles, drapes, Band-Aids, self-adherent wrap, sharps container, and tourniquet! These things are usually what comes to mind when we think about hemophilia care. Medical supplies are the first thing we think of when we plan for day-to-day life with hemophilia. Preventing and treating bleeds…
My mom asked me last week if I ever curse my dad for giving me hemophilia. It was a fair question. Recently, I had a bad joint bleed in my shoulder. And by that, I mean a really painful shoulder bleed. A wake-up-at-3-a.m.-in-excruciating-pain shoulder bleed.
A few years ago, I went to a tattoo convention. Before I could enter, I was required to sign a liability release. The form said that people with bleeding disorders (and a long list of other conditions) should not get tattoos. Needless to say, I am not always a…
It was Christmas in 1978. My brother was thrilled that Santa had brought him exactly what he wanted — a large, bright red firetruck with a ladder that really worked! (Never mind that we were Jewish. Santa always seemed to make an appearance at our home anyway, and we never…
Two weeks ago, my daughter helped me move a small refrigerator. I had the front end and she had the back, which was open and exposed various parts. When we arrived at our car, I noticed her finger was bleeding quite a bit. The cut appeared to be long but…
It isn’t that I can’t be alone. I am an introvert. As such, I can self-entertain for hours. I like spending time with my own company. I find many ways to occupy my time. Hobbies abound — I write, knit, research genealogy, geocache, record podcasts,…
Navigating the holidays can be taxing, even in the best of times, even in the best of families. Navigating the holidays with a bleeding disorder adds to the holiday challenge. Navigating the holidays with a bleeding disorder during a global pandemic? Well, that may be a bit…
I visited a hemophilia treatment center for the first time in the 1980s, to have my factor levels tested. The phlebotomist couldn’t find a vein, and I was distraught. Workers ended up pinning me down to get my blood. The result was that my factor…
I have seen it many times. When a woman in a family with hemophilia gets pregnant, some feel OK emotionally, but for many, it causes a moment of panic, and sometimes sheer terror. What have they done? They are so scared that they passed…
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