“We’ve only just begun…”

What simply used to be the opening words of a Carpenter’s song, now perfectly encapsulates my journey with Eosinophilic Esophagitis. Every step is a new frontier to explore. Concrete solutions and conclusions don’t really exist with this disease. You have to learn to capture and savor victories where you can.

Fortunately, my last blog was all about a recent triumph. I’m in remission! This means as long as I don’t eat an array of foods my body doesn’t produce eosinophils aka white blood cells in my esophagus. The problem is I can’t stay on this diet longterm because at this point I’m medically anorexic with a side of socially miserable (Food is everywhere!!! I just want to eat it all!). In case you haven’t read my other blog entries, my elimination diet required me to cut out all common allergens in addition to potatoes, corn, caffeine, and refined sugar. You never realize how unavoidable food is until you try to live without it. It turns up everywhere, especially the dishes you want the most and most definitely cannot have. Anyone on Whole30 or Paleo knows what I’m talking about here.

After being on this diet for almost 4 months, I’m so tired of eating the same foods over and over again. I tried to discuss a plan going forward with my gastroenterologist that made the diagnosis, and hit a brick wall. Amazing as she has been during this process, she doesn’t have much experience with EoE (who really does?!). Since I’m in remission her advice was to slowly reintroduce foods and see what happens. Then in a year I can return and see how I feel. This plan wasn’t as much a plan to me as it was a circle of insanity. All of my research shows the only way to know what is causing the problem is to reintroduce foods one at a time, and have an endoscopy performed every 6-8 weeks to biopsy my esophagus in order to check for the reemergence of eosinophils. However, she didn’t like this plan and vetoed it. I’m not a big fan of multiple endoscopies either, but it’s currently the only biomarker for this condition and I just want to know with absolute certainty what my triggers are.

After this conversation, I knew it was time to get a second opinion. With any kind of rare disorder or even with more conventional medical cases, you need to do this from time to time. It doesn’t mean you are a bad patient or your doctor is horrible. The only person that truly knows your body is you.  You have to trust yourself, especially if you have researched your condition and recognize you may not be getting the best possible or most up-to-date treatment. If your doctor is proficient in their speciality, they will stand behind your decision. In my case my doctor fully stood behind my decision to seek another opinion. She thought she was giving me the best advice, but knew things could have changed in how EoE is treated in the last several years. I scheduled an appointment with a gastroenterologist in Atlanta who specializes in eosinophilic disorders as well as my current allergist.

I’m someone that likes to be well-prepared. I like to know that I’m doing everything possible, especially in regards to my health. I don’t just want to feel well. I actually want to be well, to be healthy.

This has been a difficult battle for me. For the past decade doctors have labeled me “health anxious” and a hypochondriac. Instead of listening to me as I described my symptoms, they advised me to see a counselor because it was clearly a mental health issue. Even though my Eosinophilic Esophagitis diagnosis vindicates me, those labels have left me insecure and unconfident. I get nervous walking into a doctor’s office because I’m so afraid that I’m not going to be seen or heard.

In the end, I’m glad I was brave, and decided to go talk to a different gastroenterologist. He told me that everything I wanted to do is traditionally how it is treated, and we set up an endoscopy for October.  The first food I will be trialing is eggs. I have a strong feeling that it isn’t an EoE trigger, so that is why I figured it would be a safe food to eat before trying some of the others. Hopefully, it goes well and I can give you all good news. My allergist also confirmed that everything I was doing was right on track, and called me a “model patient.” We also did one more IgE blood allergy test to see if corn, potatoes, apples, and chicken could be allergies due to me still having trouble eating them when I tried to reintroduce a few of them. Fortunately, they aren’t traditional allergies, but could still be EoE triggers. EoE keeps me on my toes.

This disease has stolen many things from me, but the one thing it has given me over time is the gift of advocacy. I’m learning how to fight, defend, and trust myself. Whether it’s an illness, your education, your relationship with God, and the list goes on, you have to do the hard work. Doctors, pastors, and teachers provide great insight, and their expertise can open doors. However, experts don’t always have an answer let alone the right answer. They are authorities because they know a great amount, but that doesn’t mean they know everything. You have to take your life, your dreams, your mind, and your faith in your own hands, and fight for it. Don’t just sit back and rely on others to do the heavy lifting. Get off the bench and be part of the team.