Precious, Not Fragile - a Column by Heather Novak

Earlier this year, I experienced significant shoulder pain. I blamed it on my hypoparathyroidism, assuming it was from a muscle spasm, one of my frequent symptoms. Instead, the pain turned out to be from a pinched nerve beneath my shoulder blade. While my disease was a contributing factor, it…

As I cross off the days on the calendar leading up to my 41st birthday on Monday, I can’t help but think about how this year feels so different from the last several. I celebrated my 40th birthday last year in March, finally stable as part of the Yorvipath…

A sunny Saturday morning, and there I was again, sitting in the waiting room at my chiropractor’s clinic. As inconvenient — and expensive — as it is to add a second appointment during the week, I’m grateful he could fit me in. I’m also thankful I was able to identify…

My therapist had me sit with teenage Heather during my last eye movement desensitization and reprocessing (EMDR) therapy appointment. This Heather had her light brown hair in a bob, wore big glasses and plaid shorts, and was rocking back and forth, full to the brim with anxiety and an illness…

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…

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…

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…

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…

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…

I often wonder how many hours a year I spend in waiting rooms. I’ve been avoiding doing the math, but part of me wants to know. Because of my hypoparathyroidism and multiple comorbidities, I go to two to five medical appointments a week. An average of 3.5 appointments a…