Category Archives: Communication

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.

Denial: A Thought Process During an Allergic Reaction

As an adult I’ve experienced two anaphylactic reactions. They both had one thing in common: denial. Today I want to share my thought process during my reactions.

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We were having a great day walking around the Dutch city of Leiden. European cities have an age to them that Canadian cities can’t match. With age comes wisdom and somehow walking these cobbled streets helped me feel a sense of serenity and peace.

Earlier that day at lunch I went through a very unique experience ordering food from a waiter who spoke only Dutch, a language I couldn’t understand. It was unnerving to have my normal allergy discussion through a translator. After a few minutes my translator seemed satisfied that this restaurant was safe and we decided to eat. In retrospect, I ignored a few red flags and should have been more careful.

As I walked down the street I began feeling bloated. That’s normal enough when I’m suffering from jet lag and eating new foods in new places. I would have ignored it completely if it hadn’t steadily worsened over the course of an hour or so. Eventually I was so uncomfortable that I felt I might throw up. It crossed my mind that I may be having an anaphylactic reaction to my lunch.


When people with allergies talk about allergies to friends and family we tend to play up our vigilance. “I would never…” is the beginning of many of our bold claims. Here’s a good one that I’ve shared hundreds of times “I would never ignore even the slightest symptom of a reaction, it isn’t worth it.”

Contrary to my claim I wasn’t just ignoring my symptoms but I was actively rationalizing them away. My thought process went like this:

“My stomach hurts, that’s not an allergic reaction!”

A few moments later…
“If this was a reaction you’d already be passed out. This is taking too long, it’s just indigestion”

Finally…

“Don’t be stupid Jason, you’re making yourself panic. Take a deep breath and enjoy yourself. You’re only in Holland for a short time!”

This ongoing desperate attempt to explain away my symptoms was eventually interrupted by my brother who noticed I was behaving strangely. He offered me a mint to settle my stomach and noticed that I immediately complained that the mint made my tongue itch. With a subtlety that I only understood after the fact he casually remarked that if my tongue was itchy I should pinch my ear. I did. My ear was itchy and sore.
My brother and I locked eyes, he didn’t say anything. That was the moment I realized what was really happening.

Minutes later I was sitting on a Dutch hospital bed as a doctor scolded me for not using my auto-injector. Everything worked out fine but the denial nearly cost me my life.

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Three years later I was getting married.

My groomsmen and I rented a cottage for the bachelor party. After an evening of video games, beer, and cigars we were winding down the evening playing cards.
I didn’t feel right. My back and shoulders were itchy and I was generally uncomfortable. I figured I was tired, drunk, or both. Just like my walk through the streets of Leiden at some point it occurred to me that I may be having an allergic reaction.

I may be the king of denial because this time was nearly the same as last time.

“You’re fine.”

My brother, who is also allergic to peanuts, and was present, was not having a reaction. We had been eating the same food all weekend.

“If Dylan’s OK then I am too. It’s impossible for one of us to react and not the other.”

The worst part about the denial during shock is that it makes so much sense at the time. Every thought I had explained away my symptoms in a logical manner. I thought about indigestion, seasonal allergies, reactions to alcohol, fatigue. All of it made sense. It was enough to protect my fragile sense of security from the reality of a dangerous situation.

All good things come to an end. I walked past a mirror and saw a red patch on the back of my arm. This looked alarmingly like hives. Lifting my shirt, I checked my back. I felt a sinking feeling as I saw that my back was covered in hives.

From the outside looking in I know that this is the moment when I should have taken a shot of epinephrine and called an ambulance. I’m embarrassed that my actual response almost turned my anecdote into a tragedy. I looked at the rash and thought:

“This is fine. It’s just a rash, don’t ruin the party.”

For years, I scolded my friends who hid their symptoms to protect the fun that their friends were having. The joke was on me, I’m not so different. There I was in the midst of a full blown anaphylactic reaction convincing myself that I had nothing to worry about.

A few minutes later the hives were getting worse and I fessed up to the gang and showed them my back. While my friends debated what the rash could mean I made eye contact with my brother and immediately knew what he was thinking. This wasn’t a drill.

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Denial is one of the most dangerous symptoms of shock. Heart attacks are misunderstood as indigestion, strokes are mistaken for fatigue, and “small infections” are ignored leading to blood poisoning or worse.

We’re taught to treat hives, throat closures, chest tightness, and many other symptoms with urgency to protect ourselves. In an emergency, however, this can all be derailed by a few moments of denial. My first-hand experience was a real eye opener for me. I realize now that there is more to this equation than I had originally thought.

This can happen to any of us. If I had been reacting by myself who knows what would have happened. Luckily I had my brother with me to snap me out of denial twice. When you practice using your auto-injector or educate your friends don’t forget this scenario. Be prepared to face denial.

Always remember to take your symptoms seriously.

– Jason B.

From Food Allergies Suck to Food Allergies Rock!

Annoyed woman plugging ears with fingers doesn't want to listenI’ve found that there can be a lot of negativity revolving around food allergies. “Oh, you can’t eat peanut butter? Your life must suck!” “What?! You have to carry that thing around all the time? That’s brutal.” “Well if you can’t eat this, what can you eat?”

While the negativity can be quite overwhelming at times, I don’t really understand why it happens in the first place. What difference does it make to someone else’s life if I can’t eat something with peanuts or tree nuts in it? My life does not suck because I can’t eat Nutella or peanut butter. In fact, I think my life is better because I can’t eat those things. On the one hand, I remind everyone that because of my risk for anaphylaxis with peanuts and tree nuts, I avoid plenty of baked goods and sweets that my otherwise very sweet tooth would indulge in daily! This keeps me much healthier and in better shape. I’ve also tried peanut butter when I underwent an oral allergy test and full disclosure, I did not like the taste AT ALL.

Secondly, because of my food allergies I have learned so much about food, restaurant hospitality, travelling, airlines, baking, cooking, and especially about myself, that I would have never learned otherwise. My food allergy has opened more doors of opportunity than I could have possibly imagined when my 9-year-old self was told he was allergic to peanuts and tree nuts.

Teamwork meeting concept
For the most part, I am a very positive person. I pride myself on seeing the good in most situations. It’s not always easy to be positive when people around you always seem to pick out the negative aspects of life with a food allergy. My suggestion is to consider the fact that these people may simply not know anything about food allergies and their comments are simply ignorance. Take the opportunity to spread awareness and teach them about the positive aspects of food allergies. I think there’s something to be said about maintaining a positive outlook on food allergies. Positivity is contagious! Maybe your return comments will help them see why their comments were unjustified and why life with a food allergy really isn’t so bad after all.

– Dylan B.

The Anxiety of Never Having an Allergic Reaction

As someone who has been immersed in the food allergy world for most my life, I’ve read and heard a lot about anxiety with food allergies. However, most of the attention has always been on anxiety after experiencing an allergic reaction. As an example, my brother has had three major reactions to peanuts or tree nuts where he had to use his epinephrine auto-injector. After each of these reactions, he was very hesitant to eat out or try any new foods for fear that they might trigger another reaction. One of my best friends grew into his food allergies after the age of 20 and has since experienced at least 11 severe allergic reactions, some of which required the use of multiple epinephrine auto-injectors and very close calls in getting to the hospital. Needless to say, his anxiety when eating in a social setting is quite high!

My own anxiety about my food allergy to peanuts and tree nuts feels quite different. I’m technically at-risk for anaphylaxis. I’ve been tested every other year for as long as I can remember and the result is always the same. The peanut bump always swells up like a balloon. That being said, I’ve been extremely fortunate and never experienced an allergic reaction. I know the signs and symptoms only through what I’ve read, heard, or seen. I’ve never physically or mentally experienced what a reaction actually feels like but I still get anxious at times.

man with stressed face expression brain melting into linesI’ll give you an example. Around the holiday season, people like to share baked goods with me at the physiotherapy clinic I work for. I know baked goods are potentially risky for someone with a peanut/tree nut allergy so I always triple check ingredients and ask about the risk for cross-contamination. Only when I feel 100% confident that the treat is allergen-safe, will I take a bite. Well on one particular instance, a patient brought in brownies. I asked about each and every ingredient, was taken through the steps required to make them, and was assured they were “nut-free” because she had a nephew who had the same allergy. From the protocol I made for myself, the brownies passed every test. So I took a bite. It was delicious! I thought about how I could easily eat the entire batch and not think twice about it.

Then, I heard the patient chatting with another patient about Belgian chocolate that she bought from a bulk food store. Bulk food? Belgian chocolate? One red flag went up. She continued to talk about how that chocolate was so good that she put it in the brownies. Another red flag went up. As she turned to me, she asked if I could taste that chocolate. All I could think about was the risk of cross-contamination from the bulk food store. As a rule, I never eat “may contain peanuts or tree nuts” products because any risk is too much risk for me. So in the moment, I simply nodded my reply, set down the rest of my brownie and left the clinic to go on my lunch. As I drove, I checked my signs and symptoms a hundred times thinking that I was likely to react. I was shaking and had put myself into an anxious fit! An hour passed, then two, then three, and I realized I must have been lucky this time.

It may have been an over reaction on my part but I still think I had reason to feel anxious. The unknown, especially when it comes to food, can be quite nerve-wracking. I also think that maybe my own anxiety stems from the fact that I’ve had to administer an epinephrine auto-injector on both my brother and my best friend. Maybe it stems from the fact that I have seen the fear in my friend’s face when he was experiencing his most severe allergic reaction. Whatever the case, I’ve learned to slow my breathing, calm my thoughts, and focus on what is actually happening, not what I think could happen. This strategy has helped me conquer food-related anxiety multiple times and I consider myself very lucky to be 17 years without an allergic reaction (knock on wood!!)

– Dylan B.

My 2016: New Places, New People, and New Perspectives on Allergies

Well, it certainly has been a year. 2016 was a year of discovery and new opportunity.

I started 2016 living in Kingston, the city in which I chose to go to school and thankfully received a job in my chosen career. Unfortunately, it was not in the same city where my partner, family, and cat lived, which already had me in a slump, but then I discovered I had a new allergen to raw seeds. Not what I was expecting in my late 20’s and living away from basically everyone I trusted. So my rut had grown bigger.

Girl sitting on floor and wrote in a notebook

I spent my days doing marketing and analysis and my evenings co-running and sitting in on Food Allergy Canada’s mentorship program, Allergy Pals, and researching a newly diagnosed allergy to seeds. I have been involved with the Allergy Pals Program since it’s inception so it is definitely something that is near and dear to my heart. Especially since I grew up with the risk for anaphylaxis and always felt like I was the only one, it gave me an opportunity to help young kids know that there are other people just like them. Allergy Pals is a mentorship program ran by older mentors and junior mentors who have food allergies and are dedicated to helping younger mentees better understand and learn how to deal with different situations regarding food allergies and intolerances. Anything from personal experience to the teachable material provided, this program is most importantly a tool where all participants can share and lean on each other for support. It’s a program I’ve poured my soul into and fully support with my time, suggestions, and efforts. It’s also been a great resource for me as an adult, to learn and talk with other mentors about various food allergies and how to deal with them. After discovering my new allergy and living alone in a different city, it became a great resource for me.

I loved being involved with Allergy Pals in any capacity, whether it had been leading sessions or listening to them. So when I was given the opportunity to become the new Program Coordinator for Allergy Pals, I was ecstatic! It was something new and exciting and something I was passionate about. It was a program I respect and care so much about. I of course accepted and started moving forward to make the program the best possible product I could. It was just the thing I needed to get out of my new allergy/ far away city rut.

My goal and dream for the program is to connect with anyone who wants to learn more about tough situations, feelings, and anything else that may be included in having a food allergy. I’d also love to curate other people’s ideas and feelings to make the best possible program. Being the program coordinator allows me to give back to a program that means so much to not only me, but every other mentor and mentee involved.

It certainly was a year of change, moving, and happiness. I feel like 2016 gave me an opportunity to explore and understand my food allergies through new eyes, whether it be the mentees in Allergy Pals or the new people I surround myself with at home. After obtaining this new position and feeling more comfortable with my new found allergy, I knew it was time to make the move back home and end 2016 in my home town.

I can’t wait until 2017 to watch Allergy Pals grow and explore new opportunities. I also can’t wait to uncover new and interesting things about my food allergies and myself.

If you’re interested in learning more about Allergy Pals check out the link below:

http://foodallergycanada.ca/programs-services/allergy-pals-mentorship/

– Arianne K.

New Years Allergy Scare and Lessons Learned

My friends and I always try to do something to celebrate the New Year. I feel like it’s just such a fun night to enjoy out with your friends/family. Two years ago, my friends and I planned to go to Niagara Falls for New Year’s. We were so prepared; we booked everything way in advance, purchased our tickets for our New Year’s party, and figured out who was driving. The group I was going with was a very responsible group and they had all known me since elementary school, so they were very familiar with my food allergies. We were all so psyched to go to Niagara!

I’m a pretty frugal person when it comes to money, especially since I was still a student in University, so I assumed that my friends and I were going to eat at fast food restaurants for the majority of the time in Niagara. I actually love fast food restaurants as they are literally EVERYWHERE and I’m very familiar with what I can and can’t eat. On New Year’s eve though, my friends stopped by this lavish Italian restaurant just outside of our hotel. They made reservations for that evening, without even bothering to call me and ask me to come over and check the menu. When they arrived back at our room and told me our plans, I didn’t think much of it. I was more angry at the fact that I would be spending 30+ dollars on a dinner that I really didn’t care to eat. I would’ve much preferred something quick. I didn’t bother to go downstairs and check the place out because I just thought I’d investigate it when we went down there for dinner.


At dinner, the place was very accommodating of my food allergies. I spoke to the manager and he assured me that they were going to do everything they could to prevent any sort of cross-contamination from occurring. To avoid any miscommunication between myself and the staff, I ordered a very simple dish. However, around 3 hours later, I broke out in MASSIVE hives all over my body in the middle of our New Years party. My best friend and I went back to the room while everyone else stayed at the party.

 

Thankfully, nothing further happened, but the hives were definitely a downer on the evening. I’m not sure if they were from something I ate from the restaurant, but I had a feeling it was. Everything else I ate/drank that evening, I was very familiar with. That was the last time I will ever let my friends choose a restaurant before discussing it with me. I knew I shouldn’t have eaten there if I didn’t feel comfortable. Two years later, I’m no longer friends with any of the people I went to New Years with (besides the one girl I went back to the room with). I learned that you shouldn’t be afraid of speaking your mind and telling your friends what makes you comfortable/uncomfortable because IT’S YOUR HEALTH. 

 

Happy New Year,

 

– Giulia

Having a Happy and Safe Holiday with Food Allergies

The holidays are upon us once again! With the holiday season there are inevitably lots of gatherings, parties and celebrations. Whether it is family get togethers or work parties, food certainly plays a big role this season and is a time to be on high alert for those of us with allergies! Here are my top 5 tips to having a happy and safe holiday season with allergies.Full Homemade Thanksgiving Dinner

  1. Remind your family members about your allergies

The holidays tend to be the time of year where family members who you may not have seen for a while will be getting together to celebrate. For those more distant relatives it can be hard for them to remember that you have an allergy – especially if you are allergic to more than one thing. Instead of being frustrated and dealing with an awkward situation where you can’t eat items at your family gathering, don’t be shy to gently remind your family about your allergies. It may feel slightly uncomfortable but people often feel bad when they realize they have brought something you are allergic to so it’s better to let them know in advance!

  1. Watch out for those baked goods

As common allergens are frequently found in baked goods, it is important to be extra careful around these items. The holiday season usually means lots and lots of baked goods – cookies, Christmas pudding, pies – you name it, somebody is baking it! I have found that people often bring things into work or there are trays of baked goods at parties. It is always important to ask about ingredients and watch for cross contamination. You will generally be safest if you avoid the baked goods unless you can guarantee that they are safe!

  1. Prepare in advance for work parties

There are usually lots of fun parties to attend during this time of year. If you have an invite to a work party do your research! Look into where it is being held and if there is food being served. As it can be hard to find out all the details you are doing yourself a favour if you prepare ahead of time by eating before you go. Some parties may just have appetizers and drinks so you could be starving anyways if you haven’t had a good dinner before attending!

  1. Make your own treats

With the limitations most people with allergies have when it comes to baked treats and goodies it can be quite disheartening having no fun holiday baked goods to eat. Get creative in the kitchen and make things yourselves! You can even have some friends over and have a holiday baking party. That way your kitchen is stocked for the season and you can even bring your own treats with you to gatherings and parties so you can ensure your sweet tooth is satisfied and you don’t miss out!

Christmas lights on dark blue background. Decorative garland

  1. Don’t get stressed by the little stuff

With so many get togethers over the holidays, this can sometimes be an added stress for those with food allergies. Don’t let it get to you if you miss out on some desserts or can’t eat everything at your work party. Remember this is a time of year to celebrate and enjoy those you are with – not what ends up in your belly! I always try to put a positive spin on my restrictions by saying that I won’t put on as many pounds this time of year or be the one on New Year’s Day hitting the gym. Of course, I somehow always manage to find a few allergy-safe treats before the holidays are over!

Hope these tips help you all have a very happy holiday season!

– Lindsay S.