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I’m currently staring at a $1,400 past-due bill on my desk, the cost of a decision made. In the grand scheme of my medical bills, $1,400 isn’t unusual. It’s the same price as 12 physical therapy visits once I exceed my insurance maximum, or the cost of seven eye movement…

“Just keep swimming. Just keep swimming, swimming, swimming. What do we do? We swim, swim.” — Dory from “Finding Nemo”  Hypoparathyroidism consumes me; it’s a constant battle, a full-time job. My life revolves around the condition, whether it’s supporting fellow patients, sharing my experiences with researchers, going to the…

Whenever I write a book, there’s always a kernel of my life tucked between the pages. My latest project is about two characters who lost four years together due to a supernatural mystery. I picked four years for a very specific reason: It was the amount of time I lost…

“Long as I know how to love, I know I’ll stay alive/ I’ve got my life to live, and all my love to give/ And I will survive.” — “I Will Survive” by Gloria Gaynor My journey into motherhood began right as I was diagnosed with hypoparathyroidism. Nine months…

The week after the International Hypoparathyroidism Conference is always bittersweet. I’m so thankful I got to spend several days reconnecting with friends, sharing updates on my socials, hearing from hypoparathyroidism researchers and experts, and learning where clinical trials and therapies are in the pipeline. It’s also exhausting and…

“We must find a way to look after one another, as if we were one single tribe!” — King T’Challa (played by Chadwick Boseman) in the 2018 film “Black Panther” My brain fog has been horrible lately. I can recall moments from a random day in 1988, but can’t…

“Oh yes, the past can hurt. But from the way I see it, you can either run from it or learn from it.” — Rafiki in “The Lion King” In October 2018, I prepared to embark on a new chapter in my life with hypoparathyroidism, armed with a journal…

When I was diagnosed with hypoparathyroidism at age 18, knowing where to go to find information or how to connect with other patients was a big problem. My general practitioners often didn’t have the expertise in my disease or time to help, and usually explained my symptoms away as…

“I’m used to being judged. I know what that feels like.” — NASCAR driver Michael Waltrip Hypoparathyroidism is an invisible illness. I appear healthy, but I struggle to exercise and become dizzy from low blood pressure. I easily forget things and sometimes can’t remember what I was saying…

It’s easy to forget that not every medical practitioner understands how hypoparathyroidism affects my life. My rare disease is just a footnote at my biannual or annual appointments; unless it’s actively causing a concerning symptom, I sometimes don’t even mention it. My eye doctor knows hypoparathyroidism, also known as…