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.

Allergy Travel in Italy: A Wedding in Montepulciano

Navigating restaurants abroad in a country where you don't share the same language as the locals can be very difficult. I speak very little Italian but luckily my uncle and aunt who I was there visiting were able to help. Italians are familiar with gluten intolerance and celiac disease, and in fact there were many occasions on which I saw GF options. Dairy and nut allergies, however, are decidedly rare over in Italia. It didn't help that we were in a very non-tourist-y area where barely anyone spoke English. One night when Bran and I were having dinner without my relatives we actually ended up getting my uncle to call ahead to a restaurant where he knew the owner. They arranged for there to be something I could eat and it was an amazing meal. We had a mound of barbecued goat skewers, hearty bowls of pasta, and fresh melon for dessert at the local family restaurant called Longhorn in Pescara, Abruzzo. 

We visited Chieti, a nearby town, one afternoon. This was one of my nonno's favorite towns and he often spoke of how many fond memories he had in Chieti. I had been several times as a kid and was eager to go back. We went during siesta without thinking about how all the restaurants would be closed for lunch, and when we finally did find a couple places they were unwilling to accommodate my allergies. I think the issue was that they didn't understand and my translation cards were not enough of an explanation. Oh and did I mention it was about 45C? Luckily there was a grocery store open and we were able to buy some fruit, juice, and water to hold us over. Grocery stores are often my saving grace while on vacation.

Dining out in Pescara (below) was a little easier because my relatives were often around and had arranged restaurants for the family to eat in each night. It's a city where fishing is a main industry and the harbour is lined with boats and beach clubs. We found a cafe that had great Wifi signal and planted ourselves there during siesta most days to get some work done. They made a great Americano coffee, but we also learned that Americano is the name of the cocktail below that we accidentally ordered. 

We also visited the beautiful town of Loreto which I really regret not having been able to spend more time in. Penne was also on the list although I had been there in the past. Both are quaint mountainside towns with stunning views and impeccable ancient fixtures and details. 

Loreto

And of course there was a beautiful wedding, the main purpose of our trip. The ceremony took place in an ancient stone church and the reception was a day-long event at a restored villa on the mountainside. I managed to stave off my anxiety throughout the seafood and grill buffet courses but once we got to the sit-down dinner I began to get anxious. Seafood is rarely prepared with dairy products like cheese or butter in most regions of Italian cuisine. In fact, some may be offended if you ask! My dad notoriously got in trouble by a chef in Italy several years back when he was telling her (he speaks Italian) about my allergies - she swore to him there was no way seafood and cheese would ever meet in her kitchen.

There were several courses of pasta and each of them had a creamy sauce that the waiter said was made with olive oil but I was convinced was made with butter. I immediately got a vision of an ambulance trying to scale the mountain to get me, ruining the wedding, and having to be resuscitated in the extreme heat. I did end up getting over it and tasting about a tbsp of pasta, but I gave myself a D for how well I managed my fears at that point. As soon as the dinner was over I had a glass of wine, relaxed, and we danced to the live music while the sun set over the ocean view.