If the show must go on, I must go on to the show — flare-up or no flare-up
My best-laid plans weren't enough, so I trusted myself and made new ones
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Chronic illness doesn’t come with a pause button or a manual. Having hypoparathyroidism and several comorbidities means my best-laid plans too often get turned on their head.
After five weeks of stable occipital neuralgia symptoms, I was counting down the days to see one of my favorite Broadway musicals on tour in Detroit. I was so excited, I had butterflies in my stomach. The show, “& Juliet,” is a jukebox musical comedy with music by songwriter and producer Max Martin. The story is about what would happen if Juliet survived the end of Shakespeare’s “Romeo and Juliet.”
One of the biggest reasons I connect to this musical — besides the onslaught of early aughts pop hits, Shakespeare references, and different gender expressions — is that Juliet has to learn how to trust herself even in difficult and uncertain times.
Little did I know, if I was going to make it there, I was going to have to trust myself and communicate my needs, and just like Juliet, figure out a new way forward. Mr. Heather says the musical is “what the inside of your head must look like.” He’s right!
A good plan goes awry
Going to see a show isn’t as simple as popping in the car and then sitting in the theater, however. A change in my schedule requires extensive planning. An evening show means I need to change what time I take medications, what time I eat, and how much rest I need beforehand.
The morning of the show, I wrote out a schedule to the hour, building in two spots for rest. I calculated when I needed to eat and take certain medications, as well as when to do my hair and makeup. I was halfway through when a headache popped up behind my eyes.
My stomach sank as the claws of pain set fire to the top of my skull, then down my neck and around my shoulders. I wrapped myself in heating pads and took an extra dose of medication, but it was too late. Within half an hour, I was in an occipital neuralgia flare.
I wanted to cry.
I’d been waiting for this day for two years, and I was devastated. I told myself I’d figure it out, and took a long nap. When I woke up, I was determined to make it. But what did that look like?
It made all the difference
Heather Novak, second from right, and friends, Ashley, Lauren, and Katie attend a production of “& Juliet” at the Fisher Theatre in Detroit. (Courtesy of Heather Novak)
The first thing I did was reach out to a few people on my medical team. Upon their advice, I took extra emergency anti-anxiety medication, which helped with my neck and shoulder tension, and then began rotating my traction pillow and heating pads. I applied heat to my head, neck, and shoulders.
Then I reached out to my best friend, who had offered to drive. We decided to eat dinner and get to the theater earlier than planned, to avoid fighting the crowds. This allowed me to move quickly through the merchandise line (I had to replace my favorite sweatshirt!) and get a bottle of water.
My friends agreed to switch seats with me so I was at the end of the row, which made it easier for me to get up. I always carry Loop earplugs, and popped them in to help with noise sensitivity. I also brought my rechargeable handheld fan which kept a constant stream of cool air on my face, even through my face mask.
It wasn’t perfect.
Fifteen minutes before the show, I was in so much pain I could barely move, and took additional medication, which made me sleepy. My friend offered to drive me home, but as soon as the orchestra hit the first notes, I got lost in the music. I know “& Juliet” well, and watching my besties experience this musical for the first time was worth pushing myself. I was so thankful for my friends, even though I was heartbroken that I felt terrible.
The following week, I asked my physical therapist and my physical medicine and rehabilitation doctor if there were additional things I could do to help in the future. We made some adjustments to my pain plan, one being to wear a soft neck brace in reverse to help relieve the tension that accompanies a flare. I’m giving it a test run soon when I see my dentist.
The theater experience wasn’t what I’d hoped for when I bought the tickets, but it was still a great example of how trusting myself and asking for what I needed — even through painful symptoms — made all the difference.
Note: Hypoparathyroidism News is a strictly 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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