After an anaphylactic reaction it is common to have a long-lasting wave of anxiety, called reaction PTSD. These are the coping strategies I really use to find calm when anxiety is taking control.Read More
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.