The best-laid plans can go awry when living with angioedema

My heart sank as I walked the length of the terminal. Hartsfield-Jackson Atlanta International Airport is considered the busiest airport in the world, and I felt like the millions of travelers it serves yearly were all in Terminal D.

To make matters worse, every gate I passed had a screen that held one of the dreaded words every traveler fears: “Delayed.”

Under normal circumstances, that would be OK. If my flights get delayed or canceled in Atlanta, I can call my closest friends or cousins and have them pick me up and try again in the morning. But this trip was different: I was returning from a 16-day business trip and eager to get home. Seeing the word “Delayed” in my preferred airline app wasn’t near a spot on my wish list.

I’d planned to land in my city right before dinner, enjoy my husband and children, unpack while I talked about my trip, and get to bed at a decent hour in hopes of resetting to Central Standard Time. Instead, I was sitting in a crowded hallway with other irritated passengers as we all hoped for better news.

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After a two-hour delay, I finally and excitedly boarded the plane. I was still going to execute my plan flawlessly. Everything was finally falling into place — until the plane stopped mid-taxi.

“Sorry, folks,” the captain said over the speaker. “Air traffic control is telling me to turn off the engines. We can’t fly into this storm, so we have to wait.”

All of my well-laid plans disappeared as we sat on the runway, waiting for the storm to pass over. As I stared out the window as the plane rocked back and forth from the wind and rain, I thought, “This is what caregiving feels like.”

Storm fronts in caregiving

When our oldest daughter, whom we lovingly refer to as Ladybug, was diagnosed with hereditary angioedema (HAE), our lives seemed to revolve around destroyed plans. It didn’t matter if it were a directing project, a Valentine’s Day date, a parent-teacher conference, or a test day; we learned early that just because it was on the calendar, it didn’t mean we could do it.

Because I’m a planner and thrive in logistical situations, being a caregiver of a child with HAE challenges my ability to “function normally.” Delaying or canceling events or appointments was overwhelming and frustrating, especially if they’d been planned months ago. And I’d find myself in hospital rooms staring out of the window, waiting for the “HAE storm” to blow over. But by then, I’d be angry or sometimes inconsolable.

In recent years, however, my attitude has changed.

During the entire plane ordeal — while we sat on the runway, even amid the stormy weather — the captain came over the loudspeaker to speak calmly and convincingly. As far as he was concerned, this minor inconvenience would right itself when necessary. He assured the passengers with every announcement that we wouldn’t be there for long, regardless of where we were.

Did I get home in time for dinner? No, but I did get home. Minor inconveniences and delays didn’t keep me from my destination; they just got me there a little later.

As caregivers, it’s difficult not to get discouraged when things don’t go as planned. However, that doesn’t mean you have to give up what you want to do. Eventually, the storm passes, and you can try again.

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.