One Bite At A Time
I was thirteen when my parents took us downtown on a Saturday night as a special treat to eat at a Persian restaurant. I had eaten there once before and was so excited to again. As we got in the car to go home after our meal- I realized something was wrong - I felt like I had a stick in my throat - and I couldn’t swallow. Soon it became hard to breathe. My Mom thankfully knew immediately what I was describing and instructed my Dad to drive to the ER and for me to chew a Benadryl pill to slow the reaction. It was my first ER trip from food - little did I know one of many.
Over the course of the next 18 years I would slowly lose most foods I ate- never knowing when something safe would suddenly send me to the ER. For years I tested negative on allergy tests and yet my anaphylactic episodes never waned. I was told by many physicians - “we don’t know why you don’t have a positive allergy test- just don’t eat the food.” I stopped going to allergists knowing the ones I had encountered never tried to understand and I was left to manage my own sensitivities- hoping each bite of food I would put in my mouth in my twenties and early thirties would not lead me to react.
While 18 weeks pregnant - I lost all food - and could not eat for 3 days. It felt like rock bottom. Thankfully, a few weeks later I finally met a physician who did not just have answers- but who in an instant validated what was happening to me and told me why. My entire life made sense and I cried as I hugged her knowing I finally had hope for healing. A classic issue for some mast cell patients are reactions to foods that are not a true allergy but something you may have hypersensitivity too- and thus my mast cells treats most anything I put in my body as something to fight against. It also explained why my mast cells got up in arms when I encountered -perfumes, food dyes, preservatives, my own hormones and even the sun.
Over the last six years I have eaten a range of three to eight foods. That’s it. I eat the same brands of the food and buy everything I can in bulk. We have two freezers in our garage filled with my safe blueberries and chicken. I spend hours hunting and then packaging food so I know I can get through the months I can’t find things I need. In the summer I stock up on berries- we laugh that I have produce managers all over town who text me when they get my safe berries in. And I text with my butcher when I am in need of my 150 pound chicken order that also gets frozen and stored for the months it takes to get through it. I never once get sick of my food- in fact I’m grateful for every meal I can have without reacting and every person who helps me gather it.
This week when I met with my nutritionist we again made my list of foods to try next. It had not changed since the last time we met and I knew I had failed because I did not even try. She knew too. I could say it is because of the pandemic but knowing that this is not leaving us soon I can't stall forever. In truth, trying food is torturous -it is impossible to not feel some level of PTSD when it comes to eating - since there have been a countless number of times doing so sent me to the ER. I go in waves of when I force myself to do a food trial but this time of year is my sweet spot- always as my Birthday nears - it feels like I can't let another year begin without at least one new food trial. I have worked for years on how to keep myself calm during a trial- never wanting anxiety or stress to trigger a reaction. Once I pick the food- I rub it on my skin to see if it makes me itchy- then if all is well I touch it to my mouth and again if no problem I take one bite and wait. I immediately distract myself knowing that my body will notice the new food- a small reaction is fine- it is the big ones I can't ignore. With each success I get a bit braver to move on to the next but with each fail it feels like I have taken two steps back and it is crushing.
With my Birthday looming, on Friday morning I cooked steak-a food my body desperately needs to improve my anemia. My husband saw me slicing it and asks if I was trying it. I popped a bite in my mouth and walked out of the room as my work phone rang distracting me from the leap of faith I just took. So far after bite one I have not failed. And yes- there have been many times one bite has sent me into total anaphylaxis and I slam into the ground. Today on my second bite I also did not fail and I know tomorrow another bigger bite awaits and the next day and the next. It will take me a week or more to feel confident to say it is a win.
Typically, I don't tell people when I am trying food as their expectations and anticipations add onto an already stressful situation. But I know many who read this are similarly trying to gain new foods or medicine- so I remind you all, just as I remind myself, it is OK to feel scared. Our feelings are valid and real, but as my son cheered tonight when I told him I took my second bite I realized that taking that leap and trying a food is our real victory. Even if we fail we have won….so onwards I go-one bite at a time.
