Photo by Rebecca Gould Photography

Thursday, June 21, 2018

The Perfect Storm

It was about 6:35 am Tuesday morning when I realized I had missed a string of text messages between Susan and our allergist...texts that started at 6:10 am.

I had been up very late the night before -- working -- and I wasn't fully awake as I first looked at my phone.  As I took in the first text, I woke up fast:

"I was on the way to the rink when I started to feel very warm and itchy all over (my hands, neck, back, face) and my Dad said I looked a little red as well."

The texts continued, with Susan reporting that her body had been fully covered in hives (even her palms, she later told me), and that while her breathing had not been affected, she had used her epinephrine because of the extent of her hives and how uncomfortable she was.

No one plans to have an anaphylactic reaction.

Susan first said this to me while working on her second educational video, "This is What I Know" two summers ago.  I remember sitting at the table with her, marveling at the accuracy and importance of her very simple, straightforward statement.

No one plans to have an anaphylactic reaction.

And while we know this, and while we believe this, and while we practice what Susan calls "Epinephrine Readiness" (being able to recognize the signs and symptoms of anaphylaxis, knowing what to do in an emergency and being prepared to do it, and always, ALWAYS carrying two epinephrine auto-injectors all the time), we are still occasionally reminded of the truth in this statement in a very bold, very real way.

By the time I saw the string of texts, Susan was feeling much better.

(I am so thankful for epinephrine.)

By the time I saw the string of texts, we were at the post-reaction point that vexes me the most:  What caused this reaction?

As with most of Susan's post-dosing reactions, we have some theories, but I don't think we'll ever know for certain...and I've come to suspect a "perfect storm" of sorts.

Here's what I know:

-- Susan had to hold her daily dose of Zyrtec for the five days preceding her annual PRROTECT follow-up appointment at Ann & Robert H. Lurie Children's Hospital, which was scheduled for Tuesday afternoon.  She's done this for the last two years without issue...

-- It was extremely hot and humid and muggy on Tuesday morning (never good post-dosing, but she took her dose at 4:00 am, and my husband had the air conditioning in the car on HIGH, so she couldn't have gotten THAT warm...

-- Our allergist said the barometric pressure was super low.  She's an OIT guru, and apparently dramatic changes in barometric pressure (which I tend to feel in my head) can also cause reactions in people doing OIT.  Who knew?  (And...the things we learn...)

-- Hormones.  Ah, hormones.  Just when you think you've got a handle on something, things change.  We looked at the calendar, and it is entirely possible that Susan experienced a hormone fluctuation Tuesday morning.

I'll never know for sure, but I feel nearly certain Susan's reaction was a perfect storm of sorts, with multiple variables that are unlikely to all align coming together at one time...resulting in an anaphylactic reaction to her maintenance dose of peanut and reminding us that while Susan eats a daily dose of peanut, she is most definitely still allergic to peanut.

Reminding us of her very sage words:  No one plans to have an anaphylactic reaction.

While I don't want to sound unconcerned, or cavalier, I don't think Susan, my husband or I are particularly upset about this reaction.  We have come to understand that -- at least for Susan, reactions seem to come with the territory...and, at least for Susan, the freedoms she has far, far outweigh the risks.

And, at least for me, I like the occasional reminder of the fact that if we are prepared -- always prepared, always ready -- if we practice what Susan calls "Epinephrine Readiness," we will not face dire consequences.

This tree came down across the street from our house very early Tuesday morning.

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