Surviving the storm, be it a hurricane or my hypopara
In the face of uncertainty, preparation can be empowering
“We can’t control the storms that come our way, but we can control how we navigate through them.” — Fernanda Melchor’s novel “Hurricane Season”
It’s almost summer here in the Sunshine State of Florida! It’s hot, humid, and rains daily. Floridians know to bring an umbrella, SPF, and a water bottle wherever we go. The beach can be a comfortable place to retreat, but sometimes the sand is too hot to walk on. If you want to exercise outdoors or ride a bike, it’s best to do so before 9 a.m. or after 6 p.m., when the heat isn’t dangerous and the humidity is tolerable.
Many “seasoners,” as residents call them, flock north this time of year to enjoy the mountain breezes and pleasant temperatures. For full-time residents, summer brings a welcome break from long lines, not being able to get reservations at popular restaurants, and traffic.
But living in Florida has its ups and downs, like the roller coaster ride of life with hypoparathyroidism.
‘And brave the storm to come’
This season not only brings longer and hotter days, happy children, and a much-needed rest, but also hurricanes. Some people come together, stocking up on batteries, cans of tuna, peanut butter, flashlights, water, and instant coffee. Others wait it out, thinking, “How bad can it be?” As with hypopara, a person can’t comprehend the storm unless they’ve lived through it.
Every spring, the National Oceanic and Atmospheric Administration shares its outlook for the upcoming Atlantic hurricane season, which runs from June 1 through Nov. 30. This year, forecasters predicted a 60% chance of an above-normal hurricane season, a 30% chance of a near-normal season, with only a 10% chance of a below-normal season.
Those odds don’t sound comforting to me. It brings me back to December 2019, when I learned that my odds of receiving medication in a randomized Phase 2 trial of what’s now known as Yorvipath (palopegteriparatide) were 3 in 4. Thankfully, those odds worked in my favor, as I wasn’t on the placebo; I hope my odds of experiencing a hurricane don’t follow suit.
I worry about securing the basic survival supplies every Floridian needs during hurricane season, but I’ve even more to fret about: ensuring I have enough medication to last me through an emergency. I also stress about keeping refrigerated medication cold, as I don’t have a generator. My anxiety runs high as I contemplate the “what ifs.”
Hurricane Bari
Hurricane names are chosen in advance by the World Meteorological Organization. The list is typically repeated every six years, but names may be retired if a storm is particularly destructive or deadly, such as Hurricane Katrina.
I have a unique name, Bari, which I find fitting. Growing up, I could never find little trinkets with my name on them, but that was fine because I love my name. When I saw the list of names for this year’s storms, I chuckled, as the second one will be Barry.
Some might describe me as “Hurricane Bari” — a blast of unpredictable wind that leaves a mess in its wake. I beg to differ, but some would feel that’s a fitting description. Life with hypopara isn’t easy. It’s unforeseeable and can change on a dime, just like the direction of a storm.
But like the emerging treatments for hypoparathyroidism, radars are now more reliable and can better predict storms. They’re not 100% accurate, but similarly, hypopara treatments are not one-size-fits-all. With time and more research, both fields will become more predictable. This progress brings hope for a brighter, more manageable future.
While my children were growing up, I consistently enforced the six “Ps”: Proper Planning Prevents Piss-Poor Performance. Heeding my own advice, I’ve slowly started prepping for hurricane season. I’ve begun to stock up on water bottles, nonperishables, and canned goods. I’m making sure my flashlights work and that I have extra batteries. I’ll continue buying bottles of calcium and filling my calcitriol prescription. In case I lose electricity, my freezer is loaded with ice packs to ensure my medication stays cold.
This personal preparedness not only empowers me to face the uncertainty of hurricane season, but also gives me a sense of control in the face of potential chaos.
I believe everything happens the way it should, so if a hurricane comes my way, this brave butterfly will be prepared. I can’t predict the future; I can only control how I react. I’ll continue to spread my wings of hope, not just during hurricane season but every day. In the words of my favorite band, the Grateful Dead, “May the four winds blow you safely home.”
Note: Hypoparathyroidism News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.
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