Brave Butterfly: A Hypoparathyroidism Journey - a Column by Bari Vapnek

“The wheel is turning and you can’t slow down,/ You can’t let go and you can’t hold on,/ You can’t go back and you can’t stand still.” — “The Wheel” by the Grateful Dead  Sometimes I feel like living with hypoparathyroidism is like playing roulette, because I never know…

“He has achieved success who has lived well, laughed often, and loved much.” — Bessie Anderson Stanley I have lived more than half my life with hypoparathyroidism. My world forever changed after a total thyroidectomy for Graves’ disease in 1998 resulted in my life-changing hypopara diagnosis. Before…

“Don’t lose your grip on the dreams of the past/ You must fight just to keep them alive.” — “Eye of the Tiger” by Survivor Not long ago, I was by the pool, staring at a blank screen and wondering what to write for my next column. I put on…

“Courage is resistance to fear, mastery of fear — not absence of fear.” — Mark Twain Imagine waking up each morning not knowing how you will feel that day. Welcome to my life with hypoparathyroidism! Following my diagnosis, I was lucky to have a husband who took care…

“Your past does not decide your future.” — Anonymous proverb Last weekend was a fruitful one in terms of hope, resilience, learning, and love. I was grateful to attend an annual conference organized by the Hypoparathyroidism Association, where I had the opportunity to hear from expert doctors, researchers, and…

“No day shall erase you from the memory of time.” — Virgil Having hypoparathyroidism makes my life different from most people’s. It’s not easy to put into words all the feelings that come with this rare disorder, which affects so many parts of my life. Lately, I haven’t been…

“When you get into a tight place, and everything goes against you … never give up then, for that’s just the place and time that the tide’ll turn.” — Harriet Beecher Stowe It’s been 10 years since everything in my life changed. Many people with hypoparathyroidism say their…

“Slow down, you crazy child/ And take the phone off the hook and disappear for a while/ It’s all right, you can afford to lose a day or two/ When will you realize Vienna waits for you?” — Billy Joel, “Vienna” Living with hypoparathyroidism is unpredictable, like being on…

Having hypoparathyroidism means dealing with more than just low parathyroid hormone and calcium levels. Many patients have muscle cramps, tingling in their extremities, fatigue, muscle weakness, anxiety, and depression. These extra challenges make life difficult. After nearly 30 years of living with hypoparathyroidism, I developed stage 3 chronic…

Note: This column describes the author’s own experiences with Natpara (recombinant parathyroid hormone) and Yorvipath (palopegteriparatide). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. “Red and white, blue suede shoes/ I’m Uncle Sam, how do you do?/ Give me five,…