Even Those Things We Love Can Become an Instant Problem

Allergy triggers may bring joy — at first — for a girl with hereditary angioedema

Danita LaShelle Jones avatar

by Danita LaShelle Jones |

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I finally did it. After putting it off for several years, I finally decided to have my abdominal hernias repaired. I did everything to prepare for the surgery. I talked with the doctors about the procedure, watched YouTube videos, and talked extensively with my sister, a physician, about my recovery.

“You’re going to be surprised what you use your abdomen for,” my sister said over the phone. “Sitting up, walking, going to the bathroom, …” she went on. But of course, she wasn’t saying anything I didn’t already know. I’d done my research, and I knew what to expect.

The surgery went as planned. After I got past the groggy wake-up in recovery, my husband, PJ, drove me home the same day. He was amazing! He got me in our bed, gave me the medicine the doctor prescribed, and didn’t rest until he was sure I was comfortable. And even though I was experiencing the discomfort I expected, I did well handling it. However, my comfort level shattered when my husband did something he always does when we talk: He made me laugh.

One thing that makes our relationship work so well is my husband’s ability to make me laugh. And not just a giggle, but a full, body-shaking laugh that, more often than not, brings me to tears. Unfortunately, the one thing I didn’t realize was that I use my abdomen when I laugh like that.

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Shooting and burning pain radiated through my entire abdominal area, cutting off my enjoyment of the joke. I’d prepared for much, but this was an unexpected development. Immediately, I resented my husband’s humor. The new rule in the bedroom? No more jokes. Although temporary and rash, I thought it was a great way to avoid the consequences of something I truly enjoyed.

It’s funny how certain circumstances can alter the perception of something you enjoy.

When our oldest daughter, whom we lovingly call Ladybug, was finally diagnosed with hereditary angioedema, we were already weary of the journey it took to get there. Although we finally had answers, we were startled to discover that even with treatment, some of the triggers that caused her flares would never really go away.

Even with her preventive injections and emergency infusions, we had to be careful of her allergies to shellfish, spinach, certain medications, specific bugs, and fresh-cut grass.

Grass.

It seemed like no big deal at first. But eventually, requests for bike riding, camping, and the occasional spontaneous cartwheels became a source of stress and contention. In addition, I began to resent Ladybug’s stories of recess at the end of a school day because I constantly feared her contact with grass and how that may lead to emergency medication or a hospital visit.

Ultimately, we turned our free-spirited child, who loved the outdoors, into somewhat of a hermit because of the unpredictability of her HAE triggers.

“We gotta figure something out,” my husband finally said as I sat in front of him trying to figure out how to word a note to her school about not letting her go outside. “I know you’re worried, but we can’t do this forever.”

He was right. Like years before, the “no jokes” rule turned out not to be fun, even miserable, for me; confining Ladybug to our house or the concrete walls of her school made her equally sad.

As parents of a child with HAE,  we can’t build her care on rash decisions that lead to temporary solutions. While we had to be careful in how we went forward, we didn’t have to rob our daughter of what she enjoyed. Careful planning and moderation would allow Ladybug to engage in her favorite activities and enable us to remain somewhat worry-free.

When you’re a caregiver, it’s easy to resent the things that make our loved ones happy, especially if those things can play conflicting roles in their long-term care. We must balance being careful and allowing them to be who they are.


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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