One of my least favorite parts about having anaphylactic allergies, is listening to stories from people who don't have anaphylactic allergies, talk about people they once knew or stories they heard from other people, about someone dying from an allergic reaction. I am always confused why people tell me these stories. Does it bring them comfort?
No matter what you may have, no one ever wants to hear about stories of someone dying from the same thing they have. In my experience, it only makes me feel worse and more concerned. Of course I listen, but I don't like to. There is a consistent theme with almost every one of these stories: NO EPI-PEN!
Almost every time someone tells me a story about their friend or this person they knew that died from food allergies, I ask, "Did they have their epi-pen?" More often then not the answer is NO. They may not have had a reaction since they were little, or they didn't think they would be eating, and therefore didn't have their epi. As sad and as difficult as these stories are to hear, each time it reinforces to me how important it is to ALWAYS, ALWAYS, ALWAYS NO MATTER WHAT have my epi-pens with me at all times!
Last weekend I was in Salzburg, Austria. I went with my roommate and another friend of ours. I packed enough food for the entire weekend, just in case I had difficulty finding food. In the car we were all talking, and our friend started telling this story of her friend who had died from food allergies. She said that her friend had gone out camping with a group of people, and hadn't realized that they used peanut oil in something they had made. According to my friend, since the girl hadn't had a reaction since she was four years old, and was always good at avoiding peanuts, she didn't have an epi-pen with her. She ate some of the food, had an anaphylactic reaction, was isolated in the middle of the woods, and had no epi-pen to help save her. This story made me sad. I hate hearing about stories like that. If only she had her epi-pen, she could have been okay.
I went out to dinner last night in the city where I live. I wanted to order a pizza. I gave the server my chef card. She thought that I would be all set, but in our broken Italian we asked her if she could bring it back to the kitchen. A few minutes later a man came over to us and asked if we spoke English. "Si," I said, of course using my basic Italian automatically, instead of just saying, "yes." He said that he was 99.9% sure that the flour should be fine in the pizza, but he wasn't 100% sure, so he wanted me to know that. He asked if I had pizza in the city before, which of course I had many times. He said that it was probably the same flour and fine, but he didn't want to guarantee me. THEN, he went into this story about how when he used to work at a restaurant in London, there was a man who had died from food allergies. Another fun story to hear while I am out to dinner, trying to find something else to order! I ended up having a salad.
I don't think that people think about what they are saying, and how it will make other people feel . Maybe it only seems obvious to me that I wouldn't want to hear about someone that died from food allergies, while I am trying to find something to order out to dinner??? Unfortunately, it seems that too often I am told stories like this.
These stories remind me of my first bee sting. I was six, almost seven years old, and I was going into first grade that coming fall. I was at a day camp where they had horseback riding, arts & crafts, and a lake to swim in. One afternoon we were leaving the lake and walking back up to go change into dry clothes, and I must have stepped near a hive. A bee stung me in the back of the foot. Since everyone knew I had food allergies, they took my first bee sting very seriously. I remember one of the counselors scooping me up and running me over to the infirmary.
I always had my Benedryl and Epi-pens with me, even at that age, so I was all prepared if I did have a problem. The nurse immediately gave me some Benedryl. I sat there in my wet bathing suit on a table, waiting to see if I got any further reaction. The nurse and my counselor were talking about to each other about this girl that had been there the summer before and had an anaphylactic reaction. I remember feeling very nervous as I listened to this. My throat felt dry, and it felt like I couldn't swallow. The nurse saw me reacting to my dry throat from her scary story, thought I was having anaphylaxis, panicked, and gave me three shots of epinephrine! To this day, I am almost 100 percent sure that I did not have an anaphylactic reaction. I was reacting to the story that she was talking about it and it made me panic! This entire situation was not handled well by the nurse. I remember how furious my mom was by the entire thing! There was no reason to administer so much epinephrine, then they drove me to a hospital that was a half hour away, instead of calling an ambulance. They told my mom the wrong location of the hospital. Ugh...what a mess! On top of that, after all of this I then had to get tested at the allergist with a whole group of other people for every type of bee that there is! I may have only been six years old, but I remember all of this!
It is so important as an adult that you are careful about what you say in front of your children. Even though they may be little, they can still hear you, and they can still get scared. When I was little, that is something that I never would have expressed out loud. I never would have said that the story scared me and I panicked. Children will probably not tell you, but they will remember that it scared them!