Category Archives: Allergies and Anxiety

My Surprising Dining Out Experience

Two years ago, I found out I am allergic to soy the hard way. My best friend, who has a peanut allergy, shared a pepperoni pizza with me at a restaurant we have always been comfortable with. Within an hour, I felt like I had been set on fire, my lips started to swell, and I started getting hives. By the time I got to the hospital, I was red from head to toe. My friend, on the other hand, was completely fine. Thankfully, my trusty EpiPen® auto-injector worked the way it was supposed to, and after my short hospital stay I was fine. Through allergy tests we determined that I am allergic to soy – but only to some soy. All three of my anaphylactic reactions have been to extremely high amounts of soy protein, but I am okay after consuming things with soy flour, like certain brands of bread, and things with soybean oil or lecithin.

So when I only react to some soy and restaurant allergy guides label for all soy, my job becomes a little more work. I have to explain to restaurant workers – who often understand that food allergies are severe, but don’t understand the mechanisms behind a reaction – that I only react to some soy and therefore need to see ingredients lists, not just an allergy chart. When I have to do this every time I go to a restaurant, eating out loses its excitement. Prior to my soy allergy, I just told the waitress “I’m allergic to peanuts” and everything proceeded without a problem – peanuts were recognized enough that most restaurants seemed to be comfortable serving me. However, a soy allergy diagnosis completely changed this experience for me. The manager of a large chain accused me of trying to steal recipes when I asked for information about soy ingredients because of my allergy, and refused to serve me. Some places just labelled soy in their ingredients, but not the actual form, which always resulted in me leaving without eating. Others said that they had ingredient lists and I arrived to see an allergen chart
labelling all soy clumped together in one term. I stopped eating out entirely, except at select fast food restaurants where I personally feel safe eating.

Last fall I joined a Facebook group for local people with allergies and noticed one mom posted that her child has a weird soy allergy like mine. I connected with her and she sent me a list of places she feels safe taking her son, reminding me to contact them on my own before going just to be safe. One of those places is right down the street from my apartment, so between classes my friend and I decided to check it out.

I have never had such amazing treatment. To call this a “surprising” experience significantly undermines how I felt. The restaurant is called Famoso® and they have a few locations spread throughout the country. I went to the Toronto location, so I can only speak to their allergy awareness. Their allergy chart* is the most detailed I have ever seen, and breaks down exactly what form of each allergen is present in each dish. The manager spoke to me about how they handle allergies, both on the phone before I arrived and once I arrived. A separate kitchen is dedicated to all allergy-related meals, and is completely cleaned when a new allergy-related meal is prepared. The chef works on the allergy-related meal until it is finished, to reduce cross contamination risks. They go as far as completely cleaning the oven before putting allergy-related food in it. Of course, there is always a risk when eating out. Famoso® does have a few dishes with peanuts and/or soy protein in them, and that alone shows there is a higher risk of causing a reaction compared to places without peanuts and soy protein present. However, I was pleasantly surprised with how safe I felt and the precautions put in place by the restaurant staff.

For me, this broke a trend of not trusting restaurants. I realized it is possible to eat out and feel safe. Prior to this, I felt like restaurants didn’t want to deal with people who have allergies to foods that aren’t frequently seen. I was surprised how educated the Famoso® staff were about all allergies, how they were willing to workDd with allergies outside the Top 10, and how confident they were in their service. Famoso® is now my go-to restaurant, thankfully having a location in Toronto and in my hometown (Kitchener-Waterloo).

– Danielle B.

*Here’s a link to Famoso’s allergy chart -> http://famoso.ca/wp-content/uploads/2016/11/Famoso-Allery-Chart-November-14-2016.pdf

C is for Confidence: A Food Allergy Story

Something I know now to be the corner stone of my food allergy identity is confidence. Confidence taught, learned, and exercised at a young age is key to becoming an adult who speaks up about their food allergy in every situation. If your confidence is stolen or stifled, it can cause many kids to become ashamed of their food allergies. Then they may attempt to hide their allergy from others or dismiss the seriousness of it which makes the potential for a reaction so much larger. Instead of fighting for your child to have certain foods in a classroom, we should be explaining the severity and importance of awareness. Confidence can be a shield for ignorance and a tool to help change the perception many have about food allergies.

Confidence is the most important skill you can craft when it comes to having a food allergy and it’s something that I think needs to be instilled at a young age. We as a food allergy community need to be building each other up, and helping to educate those around us so no one feels bad or ashamed on a daily basis. If we understand at a young age that we are all unique and beautiful, then the classroom and world will be a far more accepting place.

There is a saying: It takes a village to raise a child. As a community, we should be working together to help those with food allergies gain a voice that is proud of their food allergy. Confidence in myself and my fellow classmates would have made a world of difference between eating alone and helping everyone understand food allergies at my school. It seems like a small skill, but those little seeds tended to over years in school and into adulthood will create an aware, powerful counterpart in the food allergy community. A community that is dedicated to educating others, but more importantly, confident and proud in themselves.

– Arianne K.

Note to Self: Trust Yourself More. Note to Everyone Else: Trust Me Less!

Trust isn’t something that comes easily for those of us with food allergies. Once diagnosed with a severe food allergy, you learn to avoid your allergens at all costs. Ideally, we live with a certain amount of healthy paranoia- because if we’re not paying attention to what we’re eating and what else it has touched… then it’s possible we might accidentally ingest what we don’t intend. Sometimes at parties I feel like Gollum, hovering over the place setting that I just painstakingly re-washed and set with my food… Mine… My precioussssss!

The problem is that while I need that self-doubt around my food… I don’t need it when I’m actually having a serious reaction. One would expect that, having had well over a dozen serious allergic reactions in my adult life thus far, I’d be completely comfortable and confident in knowing what exactly is going on. Yet half the time, I doubt myself. I ignore my symptoms and pretend like nothing’s wrong in spite of feeling absolutely horrid.

I think that tendency to want to ignore my body might very well be encoded into my DNA… My paternal grandmother wrote in her diary that on a day she felt sick, she *only* made three shirts before breakfast. My mom realized a few years back that she was able to ignore her pain so well that it caused nausea. After I broke my back, I started to notice that my colleagues who knew me well would ask me if I was feeling alright about 30 minutes before I noticed the agony I was in. I suppose that has translated into my food allergies as well- I’ll notice that I’m itchy and hot, of course, but I make any excuse to classify that symptom as something normal. I don’t want to admit a reaction to myself until I can’t stop itching, or I start having difficulty breathing, or I find myself camped out in the bathroom. I NEED to learn to trust myself more. I know the signs and symptoms of a reaction. I just need to learn to touch base with myself and have the courage to admit (and accept) what’s going on!

On the flip side… I need you to trust me less. During most of my severe allergic reactions, I’ve been a complete and total idiot. I think it’s actually part of the reaction, but I just stop thinking rationally. This can look like strange behaviours on my part, like not calling for help on the work two-way radio after an asthma attack had me collapsing on the floor… or ignoring the EpiPen® in my waist belt to go and find a different one upstairs before actually following medical advice to administer it. It’s like I’m watching from far away. I know it’s illogical and dangerous behaviour, but I’m not usually able to counteract it.

So when I DO come to you and admit I’m having a reaction, or when you notice I’m behaving very oddly… I need you to doubt me. If I’m curled up in a ball, refusing to answer questions, or just saying “I don’t know” repeatedly when you ask if I’m alright? Those are REALLY good clues that I need your help. Ask clear, yes or no questions, and point out my symptoms to me. If I finally admit in a quiet voice that yes, I think I need to be checked out? That’s your cue to call 9-1-1 and get me checked out! It’s never a convenient time to go to the hospital, so you can expect that I will be hesitant. I might be trying to talk myself out of it even as I struggle to breathe, so take a deep breath. Be courageous. Be ready to help me give myself the auto-injector if I need it. Honestly, it doesn’t hurt and it really does make me feel better almost instantly!

Then again, if I’m rationally able to articulate why I don’t think this is a serious reaction, I’m probably fine, and you won’t need to chase me down the street with an auto-injector! (That’s my brother-in-law’s standard question to help figure out if my reaction is mild or not: “Should I chase you with your EpiPen®?” LOL yikes.)

– Janice H.

The Best and Worst of Food Service

Everyone with an allergy knows the feeling of uncertainty. You’re halfway through a big bite of your meal when you hear someone say, “are you sure…”

Even writing about it I feel that tightness in the pit of my stomach. The tell-tale calling card of anxiety. No matter how experienced I’ve become with managing my food allergies, I still make mistakes, and those mistakes are scary.

I always try to remember that I’m not perfect when someone else is the one making the mistake. I try not to blame servers at restaurants, they’re usually very helpful. I’ve noticed one single thing that I appreciate more than any other when it comes to servers. But first a quick story.

In the middle of a meal at a banquet the server abruptly took my plate away, without explanation.

My friends at the table were confused but I knew what was happening. I had just eaten peanuts. I’m allergic to peanuts and I’ve had anaphylactic reactions in the past. Just like that I’m starting to freak out.

The server returned a moment later looking flustered and politely asking me to come to the manager’s office.

“What’s going on?”

“Just come with me.”

I’m losing it. This is the end. I’m taking a mental inventory of my symptoms. Nothing yet, but how long will it take? When will it start?

I walk into the office and I’m shocked to find it full of people.

As I sit down I’m bombarded with questions from a red faced and angry manager:

“How do you feel?
Tell us if you’re feeling bad!
You can’t sue me, you have to tell me!
How do you feel?”

This interrogation lasted ten minutes. The only response I gave was a simple,

“What did I eat?”

She never answered. For ten minutes she lectured me about lawsuits but refused to tell me what, if anything, I had eaten.

Finally a server in the corner told me that they were worried about contamination of my meal by pine nuts. I’m not even allergic to pine nuts. But they never asked me and were reluctant to answer my questions. I was fine, but my night was ruined and I’ve never been back to that restaurant.

The one thing I appreciate most in servers is direct honesty. Tell me what I’m dealing with and let me make my own decision.

Whenever you hide something from me, we risk a very serious situation.

How about another story? This one is the best experience I’ve had at a restaurant.

A big group of us went out for lunch. In the restaurant I calmly explained my food allergy to the server. His response is among the best I’ve ever had. He suggested I look through the menu and see if anything caught my eye, in the meantime he would talk to the kitchen manager and ensure that he could tell me EXACTLY what I could and could not order.

When he returned he took my order and then said:

“Thank you for joining us today. Before I place your order with the kitchen I want to explain our process so that you know we have you covered and can eat your meal in peace. When I place this order, I will announce that this table has a peanut allergy. Every staff member in the kitchen will wash their hands and until your order leaves the kitchen everyone will remain at their stations to avoid any chance of cross contamination. Our manager has assigned one cook to your order. He is working at a clean station that hasn’t been used since it was last cleaned. He’s cleaning it again to be safe. He will clean all your food and re-wash your dishes. When he’s ready to send the meal I will wash my hands and he will hand me the food, it will not touch the service counter at all. Once I pick up your meal I will not touch anything until I place it in from of you. Someone will open the doors for me, everyone will stay out of the way. Nothing will come into contact with your meal AT ALL. If anyone touches it for any reason we’ll start all over again. Is that OK with you?”

I was floored. This server just spent five minutes with me and all I ordered was a $10 lunch special!

That is the ultimate experience for me. I had no doubts, no anxiety, and I would go back in a second.

What I need from the people around me is the truth. I’ll take care of the rest!

– Jason B.

12 Reactions in 12 Months: What I Learned from 2016

From the news around the world, 2016 was a challenging year for many people. In my case, I developed more severe food allergies. It was like I’d gotten an extra, unwanted Christmas present that I just couldn’t return. Looking back, however, I can see how 2016 taught me a lot as well. Most of the lessons were learned the hard way… so I’m hoping that by sharing them, you can learn from my mistakes!

1) Take your allergens seriously!

Before 2016, I was prescribed an epinephrine auto-injector, but I didn’t always carry it with me. I avoided eating my allergens, but my housemates ate them, cooked with their flours, and I wasn’t at all careful about cross-contamination. If you’ve had allergies for a long time, you know how reckless that was… but being at-risk for anaphylaxis was all so new to me… and it’s hard to change old habits. That said, I wish I’d at least tried to change those habits before I was visiting the ER every 2-3 days in January 2016… I felt so stupid, coming in and explaining that my housemates had cooked with almond flour, and that I hadn’t washed the counter before preparing and eating my food. I have now learned to prepare my defensive strategy before using the kitchen. I have a placemat I use, I wash counters before I cook with them, and I always wash my hands immediately before eating. If I visit a friend, I re-wash dishes before I use them. I don’t trust dishwashers, as some leave caked-on food. My housemates take great care in washing dishes, so at least I can trust the dishes at home. They know that when they don’t wash things carefully… they might get woken up late at night with a surprise trip to the hospital!

2) Epinephrine auto-injectors aren’t painful!

So, I learned this a few years back during my first ever reaction… but I was sufficiently surprised that it bears repeating. Remember the best vaccine you’ve ever been given? Like where you asked if the nurse was going to give it to you and then they told you it was already done? That’s my experience with epinephrine auto-injectors. I freaked out SO MUCH the first time, I sobbed to the 911 operator “I know how to do this, but I can’t do this!!!” You see, I’d taken a decade of first aid courses, and they had told me that auto-injectors can work through jeans… and so I was imagining this giant needle that would hurt a LOT. What I have since realized is that thinking of an auto-injector as big isn’t quite right. It’s actually a very thin gauge of needle. Honestly, none of the 16 or so auto-injectors I’ve had to use have hurt. Blood pressure cuffs inflating, on the other hand, are very painful, especially if you’re texting with the same hand, so make sure to drop your phone and relax if someone’s taking your pressure!

3) Keep your epinephrine auto-injector where you can reach it, and let others know where it is!

In April 2016 I had the scariest reaction of my life. It started mild, as all my reactions do, and the serious symptoms were delayed, as many of my reactions are. Because I have chronic idiopathic hives as well as being at-risk for anaphylaxis, my allergist has given me permission to take over the counter antihistamines when I have specific mild symptoms. My hives went away, but I ignored the fact that I felt weird, and started getting ready for bed. I should have taken the epinephrine then. I took my regular night time medications instead, but as I went to swallow them they got stuck in my throat and I started coughing. Suddenly I couldn’t stop coughing, and all my symptoms came back. Dizziness, nausea, hives, redness, asthma, and I was coughing so hard I had to sit down. Coughing so hard I couldn’t get up to go get my EpiPen® in the belt that was a few meters away. Coughing so hard I couldn’t catch my breath or turn around to get the EpiPen® in the drawer about 2 inches behind me.

Thankfully, I was coughing so hard that I woke my housemates… who came downstairs, called 911, and handed me the EpiPen®. After that, I started keeping 4 epinephrine auto-injectors in the house: there is an EpiPen® next to my pillow, reachable from bed. There’s one in the belt around my waist. There’s one in my purse… and because all three of those are hard to access and easy to move, there is also one that doesn’t ever move, installed on a broom holder next to my door. Every person in the house knows where it is, so that if I react they can run and grab it. I’ve deliberately chosen not to live alone. My allergist and I are also working very hard to try and treat the chronic hives, because of course it is not recommended to take an over the counter antihistamine during a serious reaction!

4) Trust yourself, but don’t let others trust you during a reaction

One common thread during all of my serious reactions thus far? I don’t think straight. I don’t make rational decisions. I routinely ignore that nagging feeling that something is VERY wrong. I start behaving abnormally, illogically, and my answer to questions like “Are you ok? You look like you’re reacting to something” is consistently “I don’t know.” My family, and colleagues have mostly seen my reactions in person now… but it’s still one of the first things I go over if someone new joins our team at work, or if I’m eating out with friends. To give a few examples from 2016:

Near the beginning of January, I actually talked myself, my sister, and the paramedics out of giving me epinephrine… in spite of the fact that I knew something major was going on. To be fair, I was stable, and they were monitoring me… but when I was later triaged through urgent care and started re-reacting more severely, it was difficult to get the nurses’ attention. I did, and things moved very quickly, with epinephrine being administered there. Had I trusted myself in the first place, though, I could have saved myself 4 hours of misery.

The other experience where I was learning to tell others not to trust me during reactions came later. I was at work, and had a major asthma attack to some dry erase spray I was using. I collapsed, but decided against calling for help on my radio. I caught my breath, but when I told one of my colleagues what had just happened I again insisted that I was completely fine. Meanwhile I had developed hives and swelling and nausea but kept ignoring the symptoms and telling my colleagues that I didn’t know whether I was having a mild or severe reaction. Eventually the reaction progressed until I was physically unable to lift my auto-injector. Thankfully a different colleague noticed that I was about to pass out, and took action on my behalf.

My hope and prayer is that you’ll never have to go through those moments, where your logical brain is saying “I’m having a reaction, with the following symptoms, and need immediate medical assistance” but the anxiety added by the reaction results in you hiding the truth from others. You matter. Your reaction will be much more inconvenient the more it progresses. If you are experiencing an anaphylactic reaction, you are not wasting anyone’s time by getting their help. 

5) Cooking from scratch is not impossible

Two years ago, I met with a dietician to talk about how I could improve my diet. Back then I had 13 allergens. I insisted there was no way I could cut out anything further. She gave me some recipes, but I didn’t take a lot of time to try them. I had resigned myself to a fate of relying heavily on other companies to be able to cook for me at the time.

Then came 2016, and suddenly I was hit hard by the new reality of having to make everything from scratch, and even having to call every company about every possible ingredient. There’s a point, while you are waiting for re-testing, where you stop looking at what is unsafe, and you start making a list of safe foods. That was the most positive shift I made. I started making incredibly simple meals from scratch, so that it was easier to list all the ingredients of what I’d eaten that day. It wasn’t an easy shift, as I grieved the things I couldn’t eat and exhausted myself trying to find safe recipes. But it was incredibly encouraging, as each successful meal became a reason to celebrate. Each new safe ingredient source has me jumping with excitement, and I’ve really learned to enjoy cooking.

Cooking from scratch was a huge learning curve, and at first it took 24 hours a week to cook meals… but now my record stands at 5 meals made in 20 minutes (plus I ate one in that time too, and washed dishes). With only 43 things that I can eat, I have become much more willing to try eating things I might not otherwise have tried. That willingness has led to some accidental successes (like roasted kiwi, and candied organic banana peel), and some really epic failures (like grapefruit toffee). I’ve learned not to give up in the kitchen, and I wish I’d learned some of these skills before I had no choice but to use them.

If I can learn these things, however, I’m pretty confident anyone can. I’ve gone from being unable to cook eggs… and regularly “burning” water… to someone who’s made candy, soup, jams, and even some puff pastry. I still have a lot to learn, but YouTube© is an excellent resource… and the benefits of studying how to make your own food far outweigh the inconveniences at times.

All in all, I learned a lot in 2016, and I’m still learning. I suspect I will always be learning more about cooking from scratch, but I hope I can stop learning so much firsthand about reactions! I’m also hoping that by sharing this with you, you’ll save yourself the time of learning them on your own!

Here’s to fewer reactions in 2017!
-Janice H.

A Verbal Stream of Consciousness: My Worst Allergic Reaction

I’ve had two major allergic reactions in my life, well three if you count the initial reaction I had when we discovered my food allergy but I was three years old and I don’t remember it; So let’s rephrase: I’ve had two major reactions in my life that I remember.

My worst reaction had me on the edge of anaphylactic shock if it wasn’t for a handy auto-injector and a thoroughly prepared father. This reaction was to a previously unknown allergen: fish. Fresh water fish to be clear, perch to be precise.

Grilled pikeperch
I couldn’t in my wildest dreams fathom having this allergy. I was around perch a lot as a kid because my family had an annual reunion called “The Fish Fry” where the main dish was – you guessed it: perch. The funny thing is I never ate it, it smelled “gross” to me and I never had any interest. So fast forward a few years in the future to a lazy Saturday dinner. My family was cooking perch and with no other options I decided today was the day I was going to eat perch.

I took a thumbnail sized bite, maybe ever smaller but the second I took that bite I knew immediately something was wrong. From this point on my thought process was more sporadic then a cat chasing after a laser pointer.

Let me break it down for you best I can:

Something is wrong; I need to spit this out, ok now I have to clean out my mouth. I can’t swallow anything, and my lips are swelling. Wait so is my tongue. I need help.

It was at this point my family figured out something was wrong. As mentioned before, my dad sprung into action grabbing an auto-injector and promptly administrating it. My brother called an ambulance, and I sat in the kitchen with my thoughts.

Now those thoughts went into overdrive running off adrenaline and fear.

WHOA! Ok let’s get some medicine to keep it from returning, oh ya I can’t walk, I can’t really breathe, my lips and tongue are swollen- they hurt. I wonder when the ambulance will be here. Ohhh it’s getting better, thanks Epi-Pen®, glad I have you…and extras, oh hey the ambulance, that was quick considering we live in the countryside. Should I bring my purse? I sure hope someone grabs my coat. What are we going to do with the leftover perch?

Now this is where things get a little fuzzy. I remember getting into the ambulance and asking for my brother to come with me, but other than a brief discussion about how my parents would follow us, I don’t remember much. Here are the snippets I do remember in order of importance to me at the time:

  1. I’ve never been in an ambulance before
  2. They’re driving fast.
  3. Where is my purse and coat?
  4. Hey we’re here already.

Main Entrance Of Modern Hospital Building With SignsI’m sure I had plenty more thoughts, but at the time these felt like they were the most important.

After arriving at the hospital, I was seen right away by a doctor who gave me another shot of Epinephrine and hooked me up to some machines to monitor me and to give me medicine if needed, which spoiler alert: I did.

After one tiny piece of perch, almost 18 hours of hospital rooms and IV’s, I left the hospital with a new allergy and a new plan for how to tackle this allergy.

My thought process during my reaction was sporadic, hazy, and random looking back now. I barely had time to figure out what was wrong with me before my symptoms became more than I could bear. My thoughts regarding my reaction afterwards were crystal clear and it’s something that I still think about from time-to-time in no particular order.

 I need to get my allergies checked more often so I know my levels.

 I’m glad I always have an auto-injector with me or around me.

I should always trust my gut, if something doesn’t seem right, or is continuously gross to me or makes me sick, maybe I should stay away from it until I know.

I should continue telling/training people with an auto-injector

Thankfully I have people around me who are trained and can identify an allergic reaction.

I need to trust myself enough to know when I am comfortable and when I am not.

I need to be more comfortable listening to myself, and asking for help.

I love my family for always ensuring my safety.

Our thoughts and inner monologue can sometimes feel like a random strung together process that doesn’t make sense at times. It can seem like an avalanche of ideas ranging from funny, scary, and puzzling that come so fast we can barely keep track. It’s useless to compare your thoughts or ideas to anyone else’s because we’re all unique. However, that should never stop us from expressing ourselves or talking out our feelings and thoughts with others. The best we can do is try and find that little voice of reason and help prepare it with a predetermined list for emergencies so we don’t lose track of what’s important. We have to go with our instincts but also have a plan A, B, C, and Z in case of an accident. We need to trust, forgive, and have faith in ourselves because it is the only way we’ll be comfortable expressing our inner thought processes to others.

– Arianne. K

To Epi or not to Epi? Why I Stupidly Delayed Giving Myself Epinephrine

At the Library

I grew into several life-threatening food allergies when I was 19 years old, and learning to manage these allergies has been challenging. Let me tell you a story. I was spending an afternoon in a local library studying for an upcoming university exam and I decided to refuel at the library café. I ordered an iced cappuccino and after drinking a few sips, I could feel something was wrong. I could feel my throat beginning to swell and I began to feel dizzy. I looked to the café and realized that the same blender that was used to make my cappuccino was also being used to make fruit smoothies. Among the long list of allergies that I grew into are raw fruits and raw vegetables.

I was having another reaction. My throat continued to close, I felt more faint, and I was starting to have trouble breathing.

I grabbed my backpack and took out the medications I bring everywhere with me: antihistamines and my EpiPen®. I took the antihistamines, but I was hesitant to take my EpiPen®. I gathered my things, quickly got to my car, and drove to a nearby hospital. I parked my car in the emergency department (ED) parking lot and waited.

I couldn’t swallow, I was having trouble breathing, and I felt really nauseous. I made a deal with myself: if at any time this reaction gets worse, I’ll take my EpiPen®, and go into the ED.
My symptoms remained unchanged for the next half hour, and
then began to resolve over the next few hours.

Looking back, I was extremely lucky.

Double-dose

Now, another story. I was helping move some furniture at a friend’s house two summers ago. After we finished lifting the last bookcase, his father brought us both a glass of wine. After one sip I felt strange. My typical symptoms occurred (throat swelling, difficulty breathing, dizziness, and extreme nausea) but this time they came on like a freight train. I ran to get my EpiPen® and immediately administered it to the outside of my right thigh. Then I took an antihistamine. We alerted 911 and sat on the couch. Minutes after my first EpiPen®, my throat completely closed off. Even as I write this right now, I become very emotional. Those were some very tense minutes that felt like an eternity. My friend’s father was calmly instructing 911 what was happening, and my friend administered a second EpiPen® to my left leg. I was still gasping for air and my swollen throat would not let any air in. The fire fighters burst through the door. I felt a little air pass into my lungs – the second EpiPen® was working. I am so thankful that I did what I did, and that my friend and his family knew what to do too. They saved my life.

In my first story I didn’t take my EpiPen® and I am well aware how lucky I was in that situation. I have had 12 anaphylactic reactions in the past seven years, and in some circumstances, I chose not to take my EpiPen®. In retrospect, I wish I had used it every time. So, why didn’t I? Here are some common themes that I’ve noticed about my decisions:

  • This one won’t be serious, right?

I have had 12 allergic reactions in the past and most of the time I use my EpiPen®. I have never had what’s called a “biphasic” reaction, I have never needed a breathing tube in the emergency department, I have never been admitted to the hospital for my allergies, and before the reaction at my friend’s house, I have never stopped breathing completely. So, why would I have serious complications during this allergic reaction?

  • Guilt

When I administer my EpiPen®, I call 911, go to the hospital, and receive care from nurses and doctors. Usually, by the time I get to the hospital I am stabilizing, I am able to breathe without difficulty, and the swelling in my throat decreases. In the emergency department I look around and see some really sick patients – elderly patients, infants, and those who are not as fortunate as I to be recovering. I feel very guilty that I am taking up a bed. I don’t deserve this.

  • Costly

The ambulance in Ontario will cost a patient under 65 years-of-age $45, and replacement EpiPens® can cost over $100 if you do not have insurance.

  • Waste of time

After using an EpiPen® and calling 911, patients are routinely kept in the ED for 4 hours to see if they will have a biphasic reaction. This is how long it takes the epinephrine to wear off. So after the reaction, the ride to the hospital, and the ride home, at least 6 hours have gone by and it’s often more time than I can afford to give up.

It’s important to understand the difference between the medications that can help us during an allergic reaction. An EpiPen® contains the medication epinephrine (also called adrenaline). Benadryl® and other over the counter allergy medications are commonly referred to as antihistamines. The medication in Benadryl® is called diphenhydramine. It’s not necessarily useful to remember these long names, but it can be important to understand how these medications work in order to avoid making the mistake that I have made – choosing not to take my EpiPen®. Epinephrine does the job of an antihistamine but it helps in more ways, and it works much faster with stronger effects. It is always the medication of choice for life-threatening allergic reactions.

I have to be honest, there is one important reason why I chose not to take my EpiPen® that I haven’t told you yet. Whether we’ve had one happen to us, watched a friend have one, or heard the story of a friend’s reaction, anaphylactic reactions are terrifying.

A man is reacting to something he didn't expect

It’s actually happening…

Sometimes, in the early stages of an allergic reaction, it may be tricky to discern if what is happening actually is a reaction. In a situation where I may not be sure whether I am having a reaction, I used to feel that by administering my EpiPen®, I was confirming that this was, in-fact, a reaction. When people are presented with bad news, a well-known coping mechanism involves going through the Kubler-Ross stages of grieving (https://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model):

Denial, anger, bargaining, depression, and acceptance.

The bad news I was presented with was, “Fraser, you’re having an anaphylactic reaction.” By not administering myself my EpiPen® I was dealing with this bad news by denying it. I have coped with the news of an allergic reaction with other stages in the past as well. When I drove myself from the library and waited in the emergency room parking lot, I was bargaining with myself: “Okay, I’ll wait here and take an antihistamine deal?”. I know it can be difficult to do, but the safest and most effective way to deal with an allergic reaction is to skip right to acceptance.

If my body had reacted more rapidly while I was in the library, I may not have made it to the hospital safely due to the way I handled the reaction. In short, in the future, I will always use my EpiPen®. Unsure? EpiPen®. Scared? EpiPen®. It is impossible to predict how one’s body will react to the same allergen an additional time, so basing what might happen based on my history of reactions is not a good idea. Financial cost and a short stay in the emergency department should never influence my decision to take care of myself. Allergies, whether we like them or not, may be part of our lives and they are of no fault of our own. Accepting them as a part of what makes us special can be difficult, but once this is done, it makes the challenge of having allergies much more manageable.

– Fraser K.