When Your Worst Case Scenario Happens

Yesterday I read a tragic article about a 13-year old girl, Natalie, who died from anaphylactic shock due to accidentally ingesting peanut butter. After reading the first few sentences of the article, I grew angry with several questions racing through my mind. Why the hell didn’t they have an EpiPen on hand? Why did she eat something without checking and rechecking the ingredients first? Why did EMS not get there fast enough? Did they not have Benadryl on hand to slow the reaction?

Reading further, I was horrified to learn that her father was a doctor. The girl bit into a rice krispie treat that she had eaten several times before with no reaction. They did have an EpiPen on hand, two in fact. They gave her Benadryl and three EpiPen’s (an extra one the family camp provided), and even after EMS arrived they were still unable to save her life.

It was a perfect storm of events, a freak accident. They did everything right, and the poor girl succumbed to anaphylaxis while her horrified family helplessly watched.

While sadness was the first emotion that I experienced after reading this article, fear was a close second. It is my worst nightmare, my literal worst case scenario. When I was in therapy, one of the topics we discussed at length was my fear of dying from anaphylaxis. At that time, I had experienced anaphylaxis about twice a year for the past 23 years, and let me tell you, it never gets any easier or less scary. In fact, it gets more terrifying as you get older. You realize, with a fully developed cerebral cortex, how very easy it is to die doing something as simple as eating a cheeseburger, or drinking a margarita from Chili’s.

I finally had a breakthrough with my phobia when my counselor made the points that A. I always, ALWAYS carry my EpiPen with me wherever I go B. It is impossible for me to die from anaphylaxis if I have my EpiPen. Naturally, this led me to C. I’m not going to die from anaphylaxis. Phew, my panic attacks eased up and I realized that hey, one swift jab of a needle in my thigh isn’t so bad, I can handle this anaphylaxis stuff.

In the 3 minutes it took me to read the article about Natalie’s death, my deep and repressed fear of dying from anaphylaxis came flooding back. I wanted to cry, I wanted to hide. Mostly I wanted to go to bed and never eat or drink again. My safety net, my literal life saver, my epinephrine, was clearly just not enough sometimes.

I did not have a panic attack like the good ol’ days though, I talked myself through my different feelings about this new knowledge. Before yesterday, I honestly had no idea that you could receive that much epinephrine and still die from anaphylactic shock. I’ve never heard of it before. I reminded myself that while I have experienced years and years of anaphylaxis, I’ve never even been intubated before. There has always been enough time and enough medicine to save me. I’ve even been without EpiPen before, having to drive to the hospital while having an allergic reaction, and I’ve made it just fine. I will continue to make it just fine. I have been repeating those words in my head like a mantra for the past 24 hours. Nothing has changed since reading that article, the extreme precautions I take every day to not experience anaphylaxis are working, as it has been over three years since I’ve had a reaction.

What broke my heart more than anything about Natalie’s story were her last words. “I’m sorry”, she said to her mother who was watching her die. It broke my heart because I know that feeling, I know how it feels to have your airways closing while your loved ones watch. It’s the worst feeling in the world. In those moments, as scary as they are, I feel bad for my loved ones and can hardly stand to see the fear in their eyes.

Many times I have woken up from an epinephrine/benadryl/steroids cocktail induced sleep in the emergency room to see my loved ones silently weeping by my bedside and it’s always the same words that run through my head, “I’m sorry.”

I’m not sorry that I have allergies, there is obviously nothing I can do about that, I’m just sorry that they have to suffer too, from the outside. If there is anything scarier than dying, I can only imagine it’s watching your wife, daughter, friend, or sister dying and not being able to do a damn thing.

I will continue to resist the urge to type into Google ten-thousand variations of the sentence “what are the chances of dying from anaphylaxis after EpiPen?” and just keep doing what I’ve been doing: living each day to the fullest and not focusing on how my chances of dying may be slightly higher than my peers. After all, whose really to say that they are? We all have different fates, maybe my allergies and the struggles I deal with in this earthly life have absolutely nothing to do with how I am going to die someday. In fact, I’m almost sure of it.

My heart goes out to the Giorgi family tonight who lost a beautiful daughter and sister. Who knows why these things occur, why sometimes being fully prepared just isn’t enough? If nothing else, it is a reminder to squeeze your loved ones and make every moment count.

9 thoughts on “When Your Worst Case Scenario Happens

  1. I have a serious allergy to peanuts. Just the smell can cause me to react and no I don’t have one of those epipens. I have a phobia of needles sooooo yea that doesn’t really help at all. However I do keep benedryl in the house. Luckily I can easily detect peanuts just by the faintest scent or within a few seconds of tasting something so I’m able to spit it out and hurry to some benadryl in time every time. My reactions aren’t very fast but they do build up to get worse if I don’t anything about it. Try not to allow it be a fear though. I like how you said you will focus more on living each day to its fullest! That’s the right attitude to have!

  2. Your post on Celiac and Allergy Adventures “When You’re Too Anxious to Eat” literally changed my life – I’d been experiencing exactly what you described and hadn’t had the words to describe it or a sense that I could do anything to address the crippling anxiety I was feeling about eating ANYTHING AT ALL. I’ve now seen a therapist and started the process of trying to live like a normal human being again. I have a few questions for you that I’d love to email you about, if you’d be okay with that? Do drop me a line if that’s okay – I think you can see my email if I post here!

    • Mary,
      I emailed you yesterday, I cannot thank you enough for your words. It is hard to deal with some of the issues we do, but it sure helps knowing we aren’t alone in it! I’m so happy you have seen a therapist to work through some of it, amazing what just talking through things can do huh? I try to be normal too on a daily basis haha! It’s quite the challenge πŸ˜€ Talk to you soon!

  3. A very honest and moving commentary, dear Courtney, that shows how brave those with life-threatening illnesses, like you, must be every day of your lives. Much love, Brenda

    • Thank you, Behba!! It is a daily struggle, but becomes less scary when you realize and accept that you just can’t control everything around you all the time. Or even your own body, as none of us can. Thanks for your kind words! ❀

  4. Very tragic and emotional story. Also very eye opening! Thank you for sharing your thoughts, I Al’s found it very hard to read this. Since my allergies have almost killed me before it is stories like this that remind us the precautions we need to take. Thanks for sharing and letting me know I am not the only one who has fears of dying from anaphylaxis

    • I know, I had a hard time getting through it as well. My hands were shaking by the end of it! And no, you definitely aren’t the only one scared of death by anaphylaxis. Anyone who as ever experienced it knows how terrifying it is and the kind of phobia it can create. In fact, I’ve read about some people getting PTSD from repeated anaphylaxis events and it doesn’t surprise me at all. I kind of wonder if maybe a little bit of PTSD is what caused my panic attacks to start after my last episode. Interesting to think about. At least all of us allergy sufferers can band together! πŸ˜€

  5. I read this article a couple of days ago too, and decided NOT to share it with you πŸ™‚ I was shocked that Natalie couldn’t recover from all the epinephrine. I felt really scared after reading this article, it rekindled all the fear and anxiety I had for so many years about your allergies. After reading the article, I really wished I hadn’t read it. This is a sad reminder, that after 3 years of no reactions to food, that you need to continue to be diligent about what you eat. After reading this, I was reminded of something a Dr said to me a long time ago that really helped me……”You can live your life being afraid of dying, or you can live your life” That simple statement taught me that I have a choice in what I think about, and why waste the precious time we have here on earth thinking about something that may not happen. xoxo

    • hahah I don’t blame you for not sharing, and I can only imagine how you felt reading it 😦 I am definitely going to continue with my strict precautions and just pray no more allergies develop. I’m totally paranoid that an airborne nut allergy is going to develop- ugh! That would be horrible. But no need to think about it and cause the laws of attraction to kick in haha :-p And you’re exactly right, may as well live our lives because we don’t know when our time will come! Like I said in my post, I doubt my time will involve my food allergies. πŸ™‚

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