Getting Comfortable With the Discomfort of Unpredictability

A caregiver recognizes the inconsistent nature of her daughter's HAE symptoms

Danita LaShelle Jones avatar

by Danita LaShelle Jones |

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Her snaps in 4/4 time seemed to echo throughout the room. Soon, I joined in, rocking from side to side. My mother’s rhythm was contagious, and soon, I was in a full-blown dance.

“That’s it,” she said as she continued to snap. “Now say, ‘S-C-I … E-N … C-E!'”

Without missing the established beat, I repeated the sequence of letters just as my mother had. She cheered me on and made me do it once more. By the final time, she ended our little rhythmic chant with a big finish and jazz hands. Seven-year-old me panted as I held the finished pose. I was tired and out of breath, but now I knew how to spell “science.”

About 20 minutes before this impromptu performance in my parents’ living room, I’d interrupted my mother’s piano playing to show her my homework assignment. Her teacher-eyes immediately spotted that I’d misspelled the word “science.” After several failed attempts, my mother used a simple rhythm to teach me the right way.

Soon after, I found my confidence in spelling through rhythm. In fact, I conquered spelling tests (even though I’m a terrible speller) with this foolproof technique. If the rhythm was off, that meant it was wrong. That’s what I conditioned myself to believe.

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Coming to Terms With Unrealistic Expectations After an HAE Diagnosis

I still use my mother’s method today. Whether it’s grocery lists, directions, or number sequences, I find great comfort in using rhythm to remember. In my head, rhythm means everything is correct.

“White pill, allergy pill, nose spray, inhaler. White pill, allergy pill, nose spray, inhaler.”

This was the familiar medical cadence in the life of our daughter (whom we affectionately call Ladybug) at a very young age. Whenever a nurse or doctor would ask me for a list of her medications, I would rely on that rhythm.

However, when Ladybug started showing hereditary angioedema (HAE) symptoms and we experienced numerous hospital visits and new medications, I began to look at the original rhythm as our “back to normal” goal.

So when she was admitted to the pediatric intensive care unit, subjected to multiple doses of Berinert, or had to switch from Haegarda to Takhzyro, “white pill, allergy pill, nose spray, inhaler” was the chant that remained in my head. Maybe, just maybe, everything would be OK once we got back to that particular rhythm.

“She’s doing really well,” Ladybug’s pulmonologist said at her last appointment. “I think by the summer, we may be able to wean her off of her inhaled steroid.”

“Oh,” was the only sound I could make. On the outside, I kept my face pleasant, but on the inside, I panicked. Instead of celebrating Ladybug’s well-managed asthma, “losing” a medication gave me anxiety.

White pill, allergy pill, nose spray …

Immediately, the rhythm didn’t feel right — and if the rhythm isn’t right, it’s wrong! Wildly, that thought process didn’t sound ridiculous right away.

Later, I realized the list of her medications wasn’t right because of the rhythm; it felt right because, during our tumultuous journey, it was the only thing I could rely on to stay consistent.

Sometimes, Ladybug can have a great three weeks, but a vicious flare with unexplained origins can immediately follow. Medications frequently work exactly how they’re supposed to, but other times, we have to phone physicians, visit emergency rooms, or give multiple doses at home. I can’t count on her illness to do what it did yesterday or last week. HAE isn’t consistent. There’s no rhythm or pattern to it. Every morning we wake up, we have to be ready for anything.

Rhythm is predictable, and that makes me comfortable. But HAE symptoms are not. I have to be willing to admit that this is what scares me the most.

As caregivers, we have to be comfortable with the discomfort of unpredictability. Some days, I am. And other days, I take a moment to spell “science.”

Note: Angioedema 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 other 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 Angioedema News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to angioedema.


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