My nephew does not like needles. Actually, “hate” is probably a better word. He hates needles. This is not ideal, given that he has hemophilia. Recently, I was helping him practice IV infusions on a makeshift “arm” I created. As we talked, I told him, “You need to own hemophilia.
I gaze at the glorious sunrise as I take off in my red RAV4. On this particular trip I plan to make my way down from my home in Northern California to Los Angeles. My daughter and I will most likely push through the 12+ hour drive in…
As a woman with hemophilia who has a proper diagnosis and a fantastic treatment plan, I do not take my health for granted. I feel fortunate and blessed to have reached a place where coping with bleeds and pain is no longer a constant focus. I’m normal! (Well,…
I am not neurotypical. My thoughts, perception, and speech can be different than others. It is subtle, but there. For example, if someone tells me something, I take their word literally — and I mean literally. If someone tells me they poked themselves 30…
“Beep, beep.” I leap out of bed at 10 a.m. on a Saturday. My plans for the day include geocaching, a wonderfully nerdy hobby in which I hike through forests and urban areas to find hidden boxes. The GPS on my phone leads me…
My dad’s life was incredibly difficult. He was in pain all the time and misunderstood by others. He grunted and grumbled, and walked with an exaggerated limp. People thought he was a hypochondriac who wouldn’t stop talking about his ailments. Some found him interesting, others thought…
I live in the middle of nowhere. It is one of the most beautiful places on the planet. The forest and the ocean intersect, creating some of the most gorgeous hiking trails I have had the pleasure of traversing. Nature is our playground, with thousands of acres of beaches, forests,…
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.
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