Tag Archives: Reaction

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.

That Time my Friends Realized the Seriousness of my Food Allergies

One summer afternoon a few years back, my family and I were invited to our family friend’s house for one of our many summer barbeques. I especially love going to their place because they are amazing hostesses, and I always feel comfortable eating at their house. Teresa, the mother, always goes the extra mile to make sure I can eat all the food she prepares and that I’m not missing out on anything – even the dessert!

One of the many side dishes was a delicious summery looking salad which included mixed greens, fruit, and dried cranberries. I always get excited to eat an ingredient-rich salad that’s safe for me, since I typically don’t order salads when eating out due too potential cross-contamination with tree nuts. Toward the end of eating my delicious plate of food I began to feel something in my throat that I have never felt before. My throat felt like something was scratching it, as if a piece of something was stuck. My family and friends immediately noticed that I was repeatedly coughing and attended to me, watching my every move, ready to use my EpiPen®. I explained what I was feeling and we all began to look at the plates in front of us. Teresa, who prepared the salad, immediately ran to the pantry to grab the package of cranberries she included in the salad. We read the ingredients and that was it. It said may contain traces of tree nuts. Luckily, I wasn’t having difficulty breathing, I didn’t have hives, and I wasn’t feeling any other symptoms. My symptoms did not progress over the next few minutes, and I felt back to normal after about ten minutes. This was a scenario where I should have used my EpiPen®, but looking back I realize how difficult it is to decide in the midst of a reaction.

This was a moment of realization for all of us. The scared and worried look on my friends’ faces said it all. They couldn’t believe that as much as a tiny particle of my allergen, a trace amount, caused me to have a reaction. Teresa was so shocked that she forgot to check the ingredients on the package, since she is always sure to never use bulk ingredients when she cooks for me. Accidents happen and this was a lesson for all of us.

Fortunately, this was the only reaction I have experienced after the initial reaction I had when I was two years old and I have never had to use my EpiPen®. Not only was it a moment of realization for my friends, but it was also a reminder for me to always triple check the ingredients of the food I’m eating no matter who is serving it to me.

– Michelle D.

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

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.

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