January is supposed to feel like a reset — a clean slate and a fresh start. But for people with bleeding disorders, it often feels like the opposite. Prior authorizations expire. Deductibles reset. Insurance coverage shifts. Nothing about my medical reality changes, but suddenly, everything about access to care feels…
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Most of the writing I see about mental health suggests that addressing the obstacles in your way is crucial to discovering joy. While it’s important to discuss the challenges we face in the bleeding disorders community, we must also remember to celebrate and give thanks when we conquer a mountain.
Some of the funniest commercials are for insurance companies. Allstate’s Mayhem always makes me laugh. The GEICO Gecko is a fun, familiar character, and so are Flo from Progressive and Liberty Mutual’s LiMu Emu and Doug. But one series of commercials feels…
“We are uncomfortable with you around and struggle to be in your presence. We find that you talk too much and are self-centered. When you hosted dinner, you made us eat in an insulting location we did not like,” the person said. Defending myself, I said, “I am so sorry,…
Treatment for burn injuries is usually straightforward: Cool the skin, manage the wound, control pain, and let time do the rest. That’s the version most people are familiar with. When hemophilia enters the picture, though, even a “simple” burn can quietly turn into something far more complicated. To add…
A voice memo appeared in a text from one of my hemophilia mom friends. We usually see each other at national meetings or on social media, but we don’t talk much outside of that. She’s one of the coolest women I know, so I always wonder why we don’t…
Letting a doctor go can feel like a radical act, especially when, like me, you live with a lifelong bleeding disorder. Many of us are taught, implicitly or explicitly, to be grateful for any care we receive, to avoid rocking the boat, and to trust that the person with the…
“Long-sleeved shirts,” I say to my younger son, Caeleb, as we run down the list of things he will need for his dorm room. “Check,” he replies. “How about pants, deodorant, toothbrush, wheelchair, cane, Hemlibra [emicizumab-kxwh]?” He confirms he has everything packed and ready to go. We continue packing,…
Out-of-pocket maximum: This term is used by health insurance companies to inform customers of the maximum amount they may have to pay in a year for covered medical care, excluding premiums. Once this maximum is reached, the insurance plan covers 100% of eligible medical expenses for the rest of the…
During my husband Jared’s recent hospitalization, I heard one particular sentence more times than I can count: “We’ll wait for Doc’s approval.” Jared was admitted for a burn on his hand, an injury that, on its own, often follows a fairly standard treatment path. But because he lives with…
Recent Posts
- Growing up before treatments for hemophilia were safe, part 1
- WHO resolution aims to address gaps in hemophilia care
- Learning how to infuse factor gave my family freedom, part 2
- Desire to help people after hemophilia diagnosis outweighs online uneasiness
- When it comes to genetic tests for hemophilia, don’t forget Grandma