On a normal weekend on a beautiful spring day in Kalamazoo, Michigan I ate a lunch and prepared for a normal jog I would take from the sorority house to campus for a little individual workout at the WMU recreation center. OK, maybe there were cute boys at the gym too, but no matter the intent, I was on my way on foot for the short 1 mile run from Fraternity Village Drive down Michigan Avenue to the rec.
Cell phones in 1999 were the kind with coiled cords that would unfold but still were the size of a rainbow trout. Further, because my father paid the bills, I was not allowed to actually ever use the phone as it was intended for emergencies only. So it might as well have been a paperweight. Therefore, the only thing in my hand was a portable CD walkman and my school ID.
I jogged past the Big Burrito, Jimmy Johns and the campus bookstore. I ran onto campus passing the education halls and the dorms I had stayed in as a freshman. It was about half way through my jog that I started to feel an itch in my throat. I started to feel itchy all over. I felt red. I felt weird.
The rest of the run was downhill, so I talked myself into running faster and thought I’d figure it out when I got to the rec, but by that time, I was feeling nauseous. The student athlete training facility was adjacent to the rec center, and so instead of being miserable in front of all the people attending the rec, I decided to go into the softball locker room and be miserable by myself.
I used my ID to enter the building. I saw the training room door open and knew some poor athlete was doing weekend therapy to heal an injury, but I didn’t actually see any other soul as I climbed the one set of stairs leading to the locker rooms. As it was the weekend, there were no athletes in the computer lab that I walked by and all the other locker room doors were closed and quiet showing that I was likely the only person on this floor.
I used my ID to unlock and open the softball locker room door and I ran to the toilets. I will save the details, but there I stayed for at least an hour. I was drenched in sweat. My gut heaved and contracted over and over. I itched all over. My throat seemed like it was closing. I thought to myself, this is where I am going to die.
This was my first experience I can recall with my EoE. It’s a long name and it is a disease, but all of that is detail and dramatic…so to expedite the WebMD version, I experience a food allergy in a way that causes choking. It’s fine. I’m fine. It’s not a big deal…except for when I choke. Which is like never, maybe only like once a day. So, again, not a big deal.
I attempted to investigate this issue with the help of medical professionals. If you know me, I hate making appointments, so to call a doctor, or many and setting an appointment was, to me, a terrible annoyance. So, when I finally got into seeing a doctor, his words were exactly these when asked about why I experienced choking and heartburn, “God does funny things sometimes.” Wait, what? Was I talking to my pastor or the doctor? So, yes, that caused another 5 years to pass before seeking medical help again.
Over the next ten years, I couldn’t go anywhere without Tums. I remember having fancy dates with Nick in downtown Chicago and asking the Taxi to take me to a Walgreens after a wonderful dinner so I could fill my purse with reflux medication.
I had an endoscopy and was diagnosed with EOE when I was 30. The diagnosis came with no support. I see know that maybe there was no support ten years ago, or very little research at the time, but basically I was not given any help on how to make this issue stop other than having the confirmation that it is due to a food allergy. The doctor said that adults can almost never determine their food allergy. Again, great. Thanks Doc.
Throughout my 30s I took every allergy test imaginable. I took blood tests. I was pricked, over 50 times, with the result, wait for it, “inconclusive.” Ugh. I attempted a food elimination diet without a dietician and basically gave up. I then found a doctor willing to try a unique tactic. She saw the results from my blood test and my prick test and she suggested we attempt a skin reaction test. The plan was to tape the allergens to my back for 48 hours. This meant that I would have little cups of dried food contents, like dried dairy, taped to my back for 2 days. Sure. That sounds lovely. I was at the end of my rope and agreed. After more questions from the doctor, she decided we should check not only the 6 major food allergens, but also chicken. And so on my prescription paper sent home with me, it was typed, “Patient will bring cooked chicken to next appointment.”
Sometimes I have moments that I imagine the game show host appears straight out of the 60’s with a skinny wired microphone saying, “Allison, This is your life” confirming like a pinch that this is real and not a dream.
And so, I cooked chicken with the supervision of my husband. I got a little Tupperware container and I arrived at my appointment, chicken in tote.
I laid on my belly as the doctor created a grid on my upper back with a Sharpe. In each square, she labeled the food that would remain in that area – taped to my back for 2 days. And, in the last square, she wrote, CHCKN. Yes, Allison, this IS your life.
Prior to the appointment, although odd and although I had concerns, I had chosen only to go into work late not taking the day off as this was a fast doctor visit. So, after the taping ceased. I got dressed, placing the uniform cardigan of all female assistant principals over my shoulders and got in the car to drive to work. It was here, in the privacy of my car, and with the pull on my skin from the tape, that I became more and more overwhelmed with the reality of the situation I was in. I arrived at work, walked straight into my boss’s office, and said, “I have food taped to my back” before falling into a chair crying.
Yes, it was awful, but yes, it was also hilarious. I wasn’t allowed to bath that area of my body for another day after having the packets of dried food plus the chicken removed from my back. I finally was able to go in for the results. I remember laying on my belly again, feeling the doctor touch each square on my back, investigating any irritation she could find to determine my allergen of concern. I was becoming irritated as she continued to poke and not have any determining answers, and then here it was, the outcome. “It looks like oats is showing some redness.”
I almost shot up off the bed to scream, “Oats? Oats? When is the last time I’ve had OATS?! OATS are not the reason I have been choking for the last 15 years lady.” I was so mad. I could literally not remember the last time I had had a granola bar, or an oatmeal cookie, or even breakfast cereal, or a yogurt parfait topped with granola let alone an actual bowl of oatmeal.
Chicken. Cooked. Taped to my back. And for this, a hesitant and way less than confident determination of stupid oats.
So, in true Allison fashion, no doctors on this topic ever again in my life.
Last year, my mom was spending time with me. She noticed how often and sometimes how severely my choking was that she said, “Now Allison, don’t get mad at me for saying this, but I think you should go to the Mayo Clinic for this choking thing.” I wasn’t mad at her. I was thankful she cared. And thankful for her suggestion. And so I called. I got an appointment and turns out I got a doctor, a young vibrant female doctor who wears an enamel esophagus pin on her doctor’s jacket because she is such an EoE nerd. She loves the study of EoE, and better, she told me she would help. During questioning, she asked, “does this cause any other issues in life, like enjoyment of life”. I started to cry. I wasn’t expecting to cry. But there I was a blubbering mess, as I said, “yes.” When I go to backyard BBQs, I choose the applesauce and skip the steak. When out to eat, I locate the bathroom, just in case I need to make a run for it if food gets stuck. My kids watch me at home during dinner slowly drink water standing over the kitchen sink hoping the food will go down, and not back up. So, yes, it was causing issues in my enjoyment of life.
I had an endoscopy two weeks ago. I have 200 of these eosinophils in my esophagus where as you have less than 15. I also had my first consultation from a dietician. I real person who is going to help me. And tomorrow, I begin a 9 month journey to determine my allergen or allergens through a food elimination diet.
Now, more than ever, mindfulness will have to help me. I will need to be mindful of what I buy, planning my meals ahead of time, and what I eat. I will be making all my foods at home, no eating out. No pizza. No cheese. No bread or pasta. (Some of you are saying, well you can have dairy free this or that or gluten free this or that… and I say, have you tried those options. You can help by NOT saying that stuff and still truly enjoying your food, OK!? Thanks.) I will be mindfully reading labels and searching recipes. I will be mindful to not lick my fingers when making my daughter’s 6th birthday cake in a few weeks.
I will live in the present and enjoy all that I have, not be upset at all that I do not. I will find a connection with my husband as he plans to support me in this journey by joining many meals with me even though he doesn’t have to. I plan to be the most disciplined elimination diet patient who ever lived and make this a simple process that does not discover oats as the culprit again. My super power will be mindfulness.
It will be hard, but I am not afraid. I am actually so excited. It has been 20 years since I ran choking into the WMU softball locker room and now I am only a mere 9 months away from answers. What could be better? It is a good day.
PS Thanks ma.