Please Treat My Invisible Disability with Respect

This article originally appeared in the Huffington Post Blog on July 7, 2016. 

Walking towards the mirror I was sure I had a stray lash or speck of dust in my eye; it was extremely itchy. But my face paled at the sight of my lower eyelid, swollen, red, and throbbing. Next was my lower lip on the same side; the interior buzzing with irritation and puffing up against my teeth. I thought of the bread I ate less than two minutes prior, and how it sent a slight tingling feeling through my gums. I began to panic. My hands were swelling up and it hurt to make a fist. My breath was getting wheezy.

"We have to go -- having a reaction!" I stuttered a stricken command at my brother.

I downed two Benadryl almost unconsciously. He ran out of his room looking confused but alert. "You don't have any shoes on!" I stuffed my feet into my winter boots, threw my coat on and began to flee the apartment with him in tow.

For some reason I slowed down and smiled politely at the concierge, "Good morning," and walked past with a nod.

No sooner had my foot crossed the threshold that I was back to running out into the street, jacket blowing open and makeup smeared like a mad woman. Nothing was happening fast enough; cab too slow, morning traffic too thick. Luckily I lived very close to several hospitals.

"I need the Epi Pen!"

"Are you sure, let me see your face?"

"Now, I need it NOW!" My body was craving a shot of epinephrine badly. Luckily I was wearing unseasonably thin pants (the pursuit of fashion!) and my brother was able to inject the needle right through them. I laid my head back on the seat while he held my hand.

People often ask me if the needle hurts or leaves a scar. It can leave a scar if you wiggle around (I have one to prove it), but your body is craving epinephrine so the pain is irrelevant and barely noticed. What's a pin prick when you're suffocating?

The cab driver missed his turn and had to circle back around. Seriously? @#*$! I yelled an immediate STOP, my brother threw 10 bucks over the seat, and we sprung out onto the sidewalk. I was practically running down hospital row, med students and nurses gawking at me as I flew past, ears and hands and face beat red and pulsing.

I didn't take a single bite of food while home alone for months after the reaction.

Once reaching the emergency entrance of Toronto General I was ushered straight in, asked a couple hurried questions, and then rushed into a room. A group of nurses and one doctor were on me within minutes. As if by magic I was undressed and had patches stuck all over me. As the walls of my throat continued to close and my world started to go black, I asked the nurse if I was going to be OK. She gave me a comforting smile as she stuck a needle into the top of my swollen hand.

Later, I sat on the washroom floor for about 15 minutes as I was throwing up constantly. This was difficult to do while holding an IV bag and my usual germ phobic tendencies flew out the window as I grasped the wall bar and toilet seat to support my light-headed body.

For days after the incident I felt physically ill. My stomach wasn't right and I couldn't focus. I would fall asleep just by batting my eyes and eating was a challenge. I was taking Benadryl every four to six hours for three days, with a steroid pill for the first day or two to prevent the reaction from recurring. My pupils were saucer-like and I looked like an addict. Aside from the physical effects I was most affected by the anxiety.

A trauma like that plays tricks on your mind. I had an intense fear that another reaction would happen, but that I'd be home alone and unable to give myself the Epi Pen. Suddenly I thought about death all the time. I didn't take a single bite of food while home alone for months after the reaction. I would rather lie on the couch starving than give myself an anxiety attack. I also stripped down my usual meals to bland meat, rice, and potatoes. Initially I did this because it was hard to stomach anything from all the meds and stress, but I continued eating like that for quite a while because it felt safe.

Being in confined spaces suddenly made me weary and nervous. What if I had a reaction while we were stuck in traffic? I dreamt up all kinds of scenarios where I was stuck and couldn't access a hospital. I started checking my purse to make sure my Benadryl and Epi Pen hadn't vanished about 50 times a day and washed my hands compulsively. I was constantly checking my face for hives and stayed home a lot to avoid having to socialize in public settings like restaurants, bars, or coffee shops.

When I returned to work I felt uncomfortable because people didn't know what to say to me or how to act. I got a lot of "oh poor Amanda," and "oh my god, you can't eat anything," comments (accented with a sad face), which really irked me. I had survived a trauma and the last thing I wanted was to be pitied. Luckily a number of people were very supportive and focused on whether or not I was feeling OK and wanted to understand what had happened.

I had the bread sent to a lab for testing to see which unlabelled allergens it contained. Months later I got a report back saying it was 0.8 ppm of casein, a dairy product. This is why allergen labelling is regulated and should be taken seriously. Such a small amount of a dairy-derived ingredient could have killed me. If the package had a dairy warning, I wouldn't have bought it and this whole situation would have been avoided.

It was after this experience that I felt the need to write about my allergies and how I deal with them every day. At first I published a shorter version of this article on a brand new blog page, about a year and a half ago. The response was so overwhelming that I decided I should start writing about it more regularly. For me, the best way to spread knowledge, understanding, and inclusion is to write about it.

My Relaxing Canada Day Up North

Sadly the long weekend is over, but what a great one it was. Here are some snaps from my calm cottage weekend.

There's always a ton of fresh produce at the Orlando's!

My mom whips up a fresh arugula and strawberry salad.

We slow roasted potatoes and then doused in good olive oil with lots of salt and pepper.

My brother grilled up some korean short ribs

My aunt made these addictive Greek donuts that are glazed in honey and cinnamon

Peaches and other stone fruits are in season now, make sure you get them while they're good!

Zooey was a flight risk.

Reasons You Should Visit Colette This Summer

Colette Grand Cafe in Toronto has a reputation for being a strikingly beautiful French restaurant and cafe, and it's easy to see how they hold that status. Pictured below is their outdoor pavilion, situated between a calm water feature on one side and a bustling park on the other.

Wednesday was a customer appreciation day of sorts, where Colette served up free food and sangria to local patrons. Upon entering the pavilion we were immediately offered freshly shucked oysters (good call guys!) and were greeted by the fragrant smell of a charcoal BBQ. Oysters are one of my favorite foods to eat in a restaurant because they are generally freshly shucked right before serving which reduces the possibility of cross-contamination. They are also a meal or snack on their own, and pair really well with either wine, bubbly, or beer, depending on the restaurant and location. There are enough varieties that the meal can be interesting without getting too adventurous into the front of unknown (and un-allergy-tested) foods. So oysters are unsurprisingly one of my go-to menu items to order when dining out.

I've been to Colette for coffee, lunch, and dinner many times and I'm always impressed with how they handle my food allergies. When dining with my family there are three of us with severe allergies and the staff is always able to accommodate our requests with diligence and grace. They tick off all the boxes I generally check for:
- The server is understanding, writes down the allergies, clarifies when needed, and doesn't make a patronizing remark
- They check with the chef before confirming that the item I've ordered is suitable
- The allergies are reiterated when the plate is brought to the table
- The staff is knowledgeable about the menu specifics and about allergens, cross contamination, etc.

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Joella and Bran tasted some of their other offerings, including this delightful little salad skewer, a grilled octopus bite with raisins, and sangria. They gave rave reviews to everything especially the octopus. In Bran's words, "This is how octopus should be done!"

Another reason to visit Colette is the atmosphere. The place is full of thoughtful little touches and fresh flowers. It's a great place to sit and sip a coffee or linger after an abundant dinner.If you live in Toronto, head over there this weekend! And if you don't, add it to your list of places to try out on your next visit. You won't be disappointed.

Mands.