Zuzu’s Petals

The Buzzfeed Quiz section was invented for people like me. “If You Were a Dessert, Which One Would You Be?” “Which TV Show Is Your Life?” “Take This Quiz And We Will Tell You How Old You Are.” (Side Note: If the answer to that last question is “20-30,” I’m not impressed. It’s basically cheating.) I have taken the Myers-Briggs Personality Test at least half-a-dozen times. Only to get the same answer every time (INFJ for any curious folks).

In high school I made a hobby out of taking career aptitude tests. The answers always made me laugh. Me, an aerobics instructors?! BHAHAHAHAHA! If you personally don’t know me, you are missing out on one of the biggest laughs of your life. When friends took me to an exercise class, at one point I hid behind an exercise ball to get out of doing more sit-ups. I signed up for a gym membership with an array of Oreo crumbs all over my mouth and chin (When do I notice it? When I’m getting in my car, and driving away). The only way I would make an incredible aerobics instructor is if the class was a cover for couch potatoes to get concerned family and friends off their case. The whole session would be us spraying ourselves with water bottles and Instagramming our “amazing” workout.

So when my cousin Grace posted a psych quiz I had never heard of, it was Christmas morning for me! For all the other quiz addicts out there, it’s a free app called EnneaApp. If you post your results to Facebook, you get free access to read your profile. My Enneagram number is a tie between a 4 (The Individualist, The Romantic) and 6 (The Loyalist, The Doubter).


When I read that Anne Shirley of Anne of Green Gables would be a type 4, I was like “Yep, then this is definitely me.” One of my favorite Anne quotes perfectly sums up our personality: “I can’t help flying up on the wings of anticipation. It’s as glorious as soaring through a sunset… almost pays for the thud.” Basically type 4’s are the kind of people you want to be around on a good day because a good day for us is FANTASTIC! But a bad day…EVERYTHING is a CATASTROPHE. It doesn’t help that another part of my personality is skeptical and suspicious; always waiting for the bottom to drop.

So why am I sharing all this information about myself with you? To give you some perspective as I reveal the last two weeks.

Nothing in me wanted to do this corn trial. Even though my doctor has never met someone with corn as their main trigger, I know all too well how wrong people can be even if they have the letters “M.D.” attached to their name.

I started off with bacon that has a possible corn derivative in it. The source of this ingredient is usually corn, beets, or cane sugar. The first time I ate it I had a major panic attack, which was to be expected. I ate it a few times and decided to also introduce raisins (if you have been following my blog the entire time, you know that grapes are a possible trigger for me based on my LEAP MRT results). For the most part, I felt okay. I started noticing a small change in my swallowing. The best way to describe it is it somehow got slower. I noticed it more than I usually did. However, my anxiety could be playing games with me, so I kept going.

Last weekend I decided to add caffeine (black tea) and organic corn in the same day. DO NOT ADD TWO POSSIBLE TRIGGERS IN ONE DAY! I repeat: DON’T DO IT! I had a massive panic attack and then a few hours later, my throat was throbbing like crazy. It throbbed for the rest of the week. At one point I drove to the hospital, and just sat in the parking lot, to try to calm myself down and recognize that it wasn’t anaphylaxis, but a really bad EoE episode. This past weekend I decided to try again with black tea. It didn’t hurt going down, but it felt super odd. Then, later it started to throb. The next day at church my throat hurt so much and my ears felt super full like they needed to pop. During worship I tried to sing and my voice cracked over and over again. Then the throbbing returned, and I had to leave the service early due to the pain. When I’m having an episode, even the vibrations from the drums, hurts my throat.

Later that night I learned that tea bags are made of cornstarch, which may explain why I’m having such a strong reaction. I’m going to try again with loose leaf tea to see if that makes a difference.

Okay…those are the facts. Here come the rampaging emotions. Every suicidal, depressing, hopeless thought raged into my mind like an out-of-control bull. The crying spells that I said good-bye to in June, all entered the room like they had never left. After such a successful trial with eggs, I really went into corn hoping for the best; desperately wanting to be proven wrong that I ever considered corn a trigger.

Once again I was forced to grieve a life that can never be, at least not in my present reality. Eating out is off limits on a permanent basis. Going to the dentist is even more of a nightmare. Getting medicine without cornstarch, dextrose, sorbitol, etc. is unheard of without getting it specially made by a pharmacist. EoE is a cruel disease. You aren’t only in physical pain constantly when exposed to a bad food. You miss out on experiencing life to the fullest because almost everything in our culture centers around eating. It separates you from loved ones because they have no idea how to treat you.

I’m tired of living this way. It is exhausting to think about all your meals, especially when it’s the same exact meal every single day with no end in sight to this pattern.

This whole week as the Feast to Gluttony…I mean Thanksgiving approaches (sorry, sarcasm is one of my coping strategies) , I have been working on having a spirit of gratefulness. It is so hard right now to look at my life and be thankful. Clarence from It’s A Wonderful Life needs to pay me a visit, and remind me what I still have to live for as I fight the disease form of Mr. Potter. I want to be as excited about the little things as George is about finding Zuzu’s petals once again in his pocket. Yes, I really do have a lot to be thankful for and the girl buried beneath the depression knows it. She is fighting her way to the surface. However, today depression wins.

I’m going to let myself have this bad day. Life with any chronic illness is a day by day process. Some days are good, some days are bad. By the grace of God, I have had many of good days during the past few months. The sun will come out again tomorrow. Even if tomorrow is several tomorrows away.

2 thoughts on “Zuzu’s Petals

  1. I was diagnosed with EoE a few years ago, I didn’t know there were so many others in this world who are living my daily hell. It’s difficult living with people who don’t understand nor have any sort of empathy to our struggle that is real. I’m looked at like I’m over reacting, really… I’m not.

    My triggers are Soy and Dairy AND something or multiples in addition to Soy and Dairy. Most of the time I feel like I’m dying, but I carry on and pretend it’s not real, but it is. These triggers are in everything, Hot Cocoa, my favorite hot sauce, salad dressings… it goes on and on. Life is like a big fabulous sweet and savory party, but I wasn’t invited.

    I hate my life most days, it’s a lonely disease.

    Thank you for sharing your life, it means a lot!


    • Cindy,

      I’m so sorry you are also living with this disease. I know the pain and grief all too well as you’ve already read. I’m glad you know that you aren’t alone. Even though it is a rare disorder, there are countless of others struggling right alongside you. Thanks for sharing a bit of your story with me. Hope you have a great day!


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