We’ve Only Just Begun

“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.


Drumroll, please…

I started writing this blog entry two weeks ago after my follow-up endoscopy. After the procedure I came home, and began to write about the technical process, but nothing about how I was feeling in that moment. I kept my emotions, my feelings, my hopes, my fears in a vault. This morning I reread everything I wrote on that Tuesday, and deleted it all because this is what I was afraid to write:

What if I’m never well again? What if I’m forever trapped in this present reality of food avoidance? What if this is the end?

As we walked to the doctor’s office, this morning, my legs felt heavy. Each step felt like I was heading toward a guillotine. I turned to JJ and said, “I should’ve made a Michael Scott video like the two videos he made when he was waiting to discover if his true love, Holly, was engaged to another man or if they had broken up. One where I could calm myself down if I’m too excited by the news or lift my spirit up if I find myself plummeting.” If you aren’t a huge Office fan, then you might have no idea what I’m referencing, and I would apologize for it if I also wasn’t thinking, “Why the heck don’t you watch The Office?!”

The wait today couldn’t have felt longer. I prepared myself for two possibilities: 1) The eosinophils have gone down in number, but they are still present. 2) The eosinophils are at the same level they were before the extreme elimination diet or worse. In my heart of hearts, I wanted to hear: “You are in remission! You have no eosinophils in your esophagus!” I just couldn’t speak that hope aloud to anyone, except God in prayer. I said it to friends and family, but I said it with the same conviction as, “Wouldn’t it be awesome to eat all the donuts you want and never get fat?” It was a pipe dream. I just knew it was too good to be true.

I was scared. If this failed, I didn’t know what options I had left. The elimination diet framed around my LEAP MRT test results as well as eliminating common allergens was the only thing I felt might work for me. I tried Flovent for 2 weeks, and it made me sicker, so I had to quickly get off that, especially after I discovered it was corn-based. The elemental diet was out of the question for me because all of the formulas contain corn derivatives. I felt sick whenever I thought about what was to come.

When my doctor came in, I truly wasn’t prepared for what she told me. She told me I was completely in remission. Not one eosinophil!!! I was in complete shock. Not even one eosinophil?! That’s a miracle! She told me she may see numbers come down after treatment of some kind in patients, but rarely do they go from high levels in the 60’s and 40’s to zero in every tested area. I asked her if she tested all the same areas as the first endoscopy. She said she had and they were all zero. I started crying. I couldn’t believe it. WOW!!!

I’m still in shock. God blew my mind today in a way that only He can. This morning I started my day hoping for the best, but preparing for the worst. Now I sit here, completely shaken, in the best way possible. Words fail me. I’m speechless. All I could keep saying over and over again in the doctor’s office and now in my apartment is, “Thank you, JESUS!!!”

The past few months have been incredibly difficult. I have been on the hardest diet a person can be on, and having to live with the knowledge EVERYDAY that in the end it might not work for me. When everything inside of me wanted to quit, I had to keep going. Honestly, God gave me a strength and endurance that could only come from Him. I’m so thankful He refused to let me throw in the towel.

I have been handed from death over to life. Every year of my life I will celebrate August 7th as the day I saw the power of God in my life. As the day He intervened and answered the cries of my heart. There is so much I want to say and write, but my mind just keeps going blank. I’m enthralled with the joy and wonder of it all. I want to bear hug every single person that has been praying for me. I want to grab the hands of every single person hoping against hope as they wait on God, and say, “Don’t give up!” I want to shout from the rooftops, “I’ve been delivered!”

Today I’m celebrating. Today I’m enjoying this victory. There is more to come on this journey and I know that I still have a long way to go with adding food into my diet again, but today the impossible became possible. Today I got my miracle.

This is the day that the Lord has made;
    let us rejoice and be glad in it.

Psalm 118:24 (ESV)