OK, Class! Time to Open Your Calendars and Review the Year
The last days of 2022 prompt reflection for columnist Danita LaShelle Jones
I frantically scrolled through my phone, desperately trying to find the answers. It was official; I was cheating. But I needed to.
The host of the show and one of my friends, Kirk R. Nugent, had posed a complicated question to the virtual audience, and because I was on the panel, I knew he was going to ask me.
It was the annual year-end episode of “The Midnight Cafe,” a YouTube-based live show that gets deleted as soon as it’s over. The show brings together creatives of different faiths to talk about pop culture, art, religion, current events, how they view the world, and everything in between.
Because the audience types comments or responses, it’s up to the panel to keep the conversation going.
“What did you accomplish this year?” Kirk had asked.
My mind went blank. Enter the trusty calendar on my phone. I scrolled while Kirk went through his calendar, highlighting all of his accomplishments and events. I eventually found mine, too. I started a new position, wrote my first column for BioNews (the parent company of this website), and many other small achievements I’d forgotten.
Yet, while others were discussing their accomplishments and events, I noticed something else in my calendar.
- ER visit
- Hospital stay
- Flare
- ER visit
The notifications and dots stood out as I scrolled through January, February, and March. Soon, I became more intrigued by those dates than anything else.
Document everything
When Ladybug (our oldest daughter’s nickname) was officially diagnosed with hereditary angioedema (HAE) in 2021, doctors told us to document everything. So my husband and I did our best to keep up with her flares, emergency medication, and when she had to go to the emergency room or stay in the hospital.
At first, recording all these events seemed tedious. But soon, we realized that the first question insurance companies, pharmacies, and medical personnel would ask was, “When was Ladybug’s last ___?” Relying on our calendars to keep up with her HAE quickly became second nature.
By the end of 2021, we had recorded about 40 days in the hospital, a little over 40 Berinert infusions, countless Haegarda shots, and numerous trips to her doctor. When I look back on that year, it was filled with stress, fatigue, worry, and uncertainty.
And here I was, on a live show, recounting my 2022 to an audience and somewhat fearing that the medical events would rival the previous year’s.
However, something different happened. I found that Ladybug had fewer hospital visits and more days at home. Her ER trips were less frequent, and her visits to the doctor had turned out to be check-ins.
Looking back at 2022 proved that while she still had her various challenges, Ladybug had a better year.
“We may not own the results of our story, but how are we stewarding it? Who are you sharing it with?” Kirk asked the audience at the show’s end.
I smiled at his questions. Although we still struggle with Ladybug’s symptoms, we’ve made it our business to tell our story. And while it may not make our journey easier because we continue to experience firsts, we hope our story can help other families’ firsts feel more manageable.
Whether you’re a caregiver, a person living with a chronic illness, or a healthy person seeking to be a better advocate, review your 2022, see how far you’ve come, see how you’ve overcome your challenges, and then tell someone.
Sharing your story with others is the best way to inspire them. Because if we’ve made it this far, they can have hope, too.
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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