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Doing the Allergy Dance With EpiPen Phobia

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For the last 10 years or so I have been, or supposed to have been, carrying an EpiPen. Most of the time you can find one in the vicinity of where I am, although it may be in the apartment when I am at the grocery store. Having it in the same city counts right? It was prescribed when I began having reactions to unknown allergens, something known as idiopathic anaphylaxis. I began reacting to foods I had never before had issues with as well.

I am an educated person, medically educated at that, but when it came to my own health I was oblivious. I don’t know if it’s because I was too busy to take notice and deal with the symptoms and issues appropriately, or because it had been the way it was for so long I didn’t know it should be any different. I am an observant individual but I ignored what was happening to my own body.

If I had allergies as a child I don’t remember. As an adult, I began to notice when doing yard work that if I even touched a leaf or a branch the offending thing would leave its mark. I would have raised, red lines, bumps, and patterns all over my arms and ankles. I wouldn’t notice until later and assumed I was scratched.

Then came the burning, watering eyes. It would be so intense I wouldn’t even be able to drive. That couldn’t be ignored because driving was a necessity so I invested in some allergy eye drops.

Then I began having random reactions, serious ones, where I’d break out in hives. I was always prone to what I thought was flushing, but as it turns out it was chronic hives. Along with hives would come intense itching, sometimes nausea, itchiness and tightening of the throat, and even a feeling that I would pass out. After I reacted to some foods I finally went to an allergist.

I didn’t have any food allergies, but I was allergic to every native grass and tree. As well, I was diagnosed with idiopathic anaphylaxis which means I could react to anything at any time for any reason. I was supposed to take oral anti-histamines twice a day, use a nose spray, and carry an EpiPen.

I wasn’t good about carrying it with me and sometimes even if I did have one it was expired. Anyone who has been prescribed one of these devices knows how expensive they are. I used to play the beat the insurance game. I’d ask for a new prescription right after I hit my deductible because everything after that was covered at 100%. And, my deductible was covered because another medication for another disease that was uber expensive was covered by a grant and even though the medication was paid for by the grant, they still ran it through insurance when it was filled. Voila!! Deductible met and the rest of my insurance needs for the year were covered.

All of this happened at a time when I had a multitude of health mysteries occurring, all originating from different body systems. Almost 10 years later they are all still part of my daily life and I believe they are all somehow interconnected.

The random reactions were held at bay for a while after I started taking allergy medicine. Then they came back stronger and more often than before. The oral medicine was increased to twice a day and I hadn’t had a reaction again until a year ago.

The last few were the worst ones I’ve ever experienced. In November 2019 I had to have surgery. They were alerted to the fact I have an adhesive allergy, yet still they used surgical glue. The area started blistering a day after I left the hospital and I called for a steroid prescription. It didn’t even get filled before I was being raced to the ER feeling like I was having a heart attack fighting the blackness that was threatening if I passed out. The next was on a trip to visit family. We were eating dinner when I could feel the hives creep up my neck. The feeling I would pass out was absent, but for the first time during an episode, I could feel my face start to swell. I had already taken multiple antihistamines with no positive effect. My aunt drove me to the urgent care where they said my throat was closing. I received the normal cocktail, Pepcid, steroids, and Benadryl IV. My skin was so itchy I wished I could peel it off. After a subsequent dose of Benadryl, it started to calm down. It was now almost midnight and we had to find a 24 hour pharmacy to fill the multiple prescriptions I left with, including one for a new EpiPen. The one I had, that I didn’t even try to use, was expired.

As has happened in the past, once I have one reaction, another is soon to follow. Days later I was back home when I suddenly was short of breath and broke out in hives. Another ER visit and another cocktail later, I was home making an appointment to see my allergist.

This time I had no excuse. We have great insurance. The copay for the name brand when I had filled during my trip was $10. When I went to see my allergist she asked if I used it before I went to the ER the last time I said no. When she asked me why I told her because I am terrified.

I don’t want to die. I know that anyone of these reactions could kill me if not treated in time. Regardless, I am scared out of my mind to stab myself in the thigh with a device filled with epinephrine. I’d rather gulp down multiple doses of multiple antihistamines and take my chances getting to the ER in time. Even if it means driving myself. It’s an irrational fear and I realize that. Yet, I can’t overcome it nor can I explain it. I am alone quite often and I think maybe that is part of the cause. Not knowing how I will feel when the epinephrine hits my bloodstream or what will happen after is just too fearful. What if I inject myself and immediately pass out?

However, the last three episodes were far too serious to ignore. I have started carrying my EpiPen with me at all times. As well, I have adopted a dog and trained him to be a service dog. If he sees my EpiPen he will bark until I give him the command to stop. This way, if I have to use my device I will not be alone. As well, if I’m not able to alert anyone that I need help, I have someone to do it for me.

Now I just need to teach him to inject it and scratch my hives while he’s at it.

Photo credit: AndreyPopov/Getty Images

Originally published: January 23, 2021
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