Lately, I have been enjoying my life again.

I wake up actually wanting to live. Fear and anxiety, two of the most annoying and horrible wake-up callers, no longer greet me every single morning. Sometimes I can’t remember the way I used to feel. As I walk around the park by myself, the desire to check my pulse and rub my neck isn’t as prevalent. My body is slowly healing and my mind is playing catch-up.

So much of my EoE symptoms played out inside my brain before they ever effected my throat and esophagus. For the past 5 years I have lived in a body that was constantly sounding the alarm, screaming, “Hey! There is an emergency! I’m not Dwight Schrute trying to scare you or teach you the perils of life through a crazy drill!  This is for real! Mayday!”

To say it has been nice to enjoy the quiet of my own self would be an understatement.

Yet…

It might be coming to an end.

My diet has been really hard the past year. As you know, if you have been an avid reader of this blog, it has been more like “monitored anorexia” than a restricted diet. In January I made an appointment with my gastroenterologist. I cried, cursed, and complained about my life. I told him I just couldn’t live like this anymore. Some kind of solution had to be out there to help me be Sarah again.

Since Christmas I have been on a very restricted version of the AIP diet. This diet already is super severe, so long-term this won’t supply all the nutrients my body needs. Actually, I had to break it and add in gluten-free oats again after two months of being without my two gluten-free grains (oats and rice). I was having crazy bad migraines, and I think it was a combination of intense hunger and some crucial vitamins and minerals.

My gastroenterologist told me in that January appointment that I needed to try the Budesonide Slurry. He said I had tried harder than most patients to make the diet work, and that it wasn’t for a lack of trying that I wasn’t seeing results. He knew I needed to hear that.

Budesonide is a liquid steroid that you mix with a thickener like maple syrup, honey, cornstarch, or Splenda. You drink this concoction every morning and wait an hour to eat. It is supposed to coat your esophagus and get rid of the build-up of white blood cells aka eosinophils.

I’m scared because this is my last resort (other than living on a very restricted diet long-term and maybe eventually down the line needing a feeding tube).

It has been a sort of vacation lately not having “Fear” walking around my mind like he owned the place. Now I feel like he is making arrangements to stay indefinitely.

Scenarios I am trying to prepare myself for:

1)    It works! I can whatever I want again and I have little to no side effects.

2)    It works…but I still can’t eat whatever I want.

3)    It works…but the side effects are severe and horrific.

4)    It doesn’t work and I need to go back to the drawing board.

Recently, I read an incredible book by Kate Bowler, Everything Happens For A Reason: And Other Lies I’ve Loved. In it she says, “I plead with a God of Maybe…It is a God I love, and a God that breaks my heart.” That perfectly describes the emotional tennis match going on in my mind.

Will God use the medicine to heal me? Will I ever feel whole again?

If the results are good, I wish I could know now. If they are bad, I pray that I don’t fall into a pit again.

It’s so hard to pray at moments like these. I know there are worse things in the world, but this is the worst thing that has ever happened in my world. This disease is the most difficult battle I have ever faced because it’s not just one battle. It set off a war within me and threated to destroy everything I love. What’s deeply disheartening is it doesn’t only affect me. Yes, I bear the brunt of it, but those that are close to me also carry the weight of this burden.

If you find yourself in the valley between death and life, even though it is dark and we feel alone, just know you have a fellow sojourner making the climb; praying and hoping she will reach the top of the mountain in the land of the living. Whether it is due to divorce, the loss of a loved one, infertility, chronic illness, cancer, etc. I’m sorry you also find yourself in this place. I may not know what you look like or what your struggle is, but I’m praying for you as I type these words. I pray that Jesus, the Ultimate Counselor and Great Physician, comforts you with His presence and fills you with His peace that surpasses all understanding.

I don’t know if everything will be okay. I don’t know if the medicine will help or not. All I know is God will meet me on the other side of the outcome and won’t leave my side.

That’s enough.

That has to be enough.

Autumn has officially arrived to Atlanta!

Okay I know it has been a while since I last posted. The month of September and October have been a bit of a whirlwind!

When I saw my new gastroenterologist, Dr. Max Shapiro, in August we discussed reintroducing my body to “corn and its by-products” over the course of the next 6 weeks. He personally hasn’t seen corn as an EoE trigger in any of his patients. Side note: Whenever doctors tell me this, I immediately have a suspicion that they are due for a weirdo patient and guess what it’s gonna be me (if you know me, you know I sang this last phrase in Justin Timberlake’s voice). With so much happening during the month of September, I didn’t want to risk potentially flooding my biggest culprit into my body once again.

I decided on eggs and I loved it! Eggs are so good for you and with my limited calories I wanted to bring something in that is packed with nutrition. I know some people don’t like eggs, but I’m a serious breakfast lover. It’s one of the reasons why I firmly believe if Leslie Knope and Ron Swanson were real people we could be friends on that common link alone without factoring anything else into our friendship chemistry.

If you have EoE or are currently on an elimination diet to determine if you have any food intolerances, just know when you reintroduce a food, be prepared for anxiety. Even if it is a food that you believe is reasonably safe for you, you will still have fear. I tell you this so you are prepared and not caught off guard. The first time I ate eggs, I decided to go slow and have scrambled eggs made with only egg whites. I read research that suggests that many people can tolerate the whites, but the yolks might provoke issues. I scarfed them down and waited to see if my throat tightened or experienced any uncomfortable symptoms.

Inhaling your food is never a good idea, but when you are anxious you have a habit of doing this without knowing it. You just want to get it over with, so you end up inadvertently swallowing a good amount of air and holding your breath at times. This meant I had a lot of belching after the first trial, but I recognized that this would probably happen for a time because of my anxiety levels.

I decided to try eggs again and that experience was a lot better, and I didn’t have any unpleasant side effects. I started adding yolks to the concoction, and still felt really good. None of the symptoms that I had with potatoes appeared. If you aren’t familiar with my blog entry on potatoes, when I tried to reintroduce them 2 separate times, after one week of eating them constantly I started to have constant throat tightening, began to have trouble eating other foods that a week before I had no problems consuming, and had a full blown EoE episode where I felt like I couldn’t swallow. Once I cut the potatoes out all the symptoms went away, which led me to determine that sadly potatoes and I may never ever get back together.

After eating the same ten ingredients for the past few months, having eggs again sent me over the moon. I even found a cool recipe for pancakes on Pinterest! Okay, well not real pancakes, but still delicious all the same. You take one medium size ripe banana and mash it. Next, you add 2 eggs and mix it all together. Then you cook them like you would pancakes. You pour some of the mixture into a coated pan. I couldn’t use cooking sprays, so I used a little organic olive oil to coat the pan and it did the trick. You cook it over a low heat and flip it after about 2 minutes. After not eating anything close to this for the last few months, this tasted like a real treat. This tastes amazing on its own, but you can also add some cinnamon for some more flavor.  I also added sugar during this trial, and sometimes I would add a little bit of sugar to the mix, especially when the banana wasn’t yet ripe. My husband spoils me with his amazing cooking, and he even started to make me a homemade strawberry glaze (organic strawberries and cane sugar) to put on top. So so good!

For this trial I ate eggs roughly every day sometimes multiple times a day. I would sometimes add them to my burgers, scramble them for breakfast, or most often I would make banana pancakes for dessert. I have a big sweet tooth, so this elimination diet has been really hard because without sugar nothing quenched the craving. Also, all you people that are like “fruit is such an amazing dessert” are all lying to yourselves.

For those of you wondering if I ever had trouble in the past eating eggs, yes I did. Eggs used to be difficult to eat when I was in the thick of my EoE, but during this trial I didn’t need any water or liquid nearby to help me swallow. Sometimes the foods that are the hardest to eat when your eosinophil levels are high aren’t actually the problem children. For example, I already mentioned potatoes. That reaction took a week of eating it before my body gave me major reactions and fully rejected it. Though it is smart to keep a food journal and watch your symptoms like I did, you still need to have an endoscopy performed no matter how you might feel.

Last Tuesday I went in to have one performed. Even though this is my third one, I still get so nervous before the procedure. After the procedure, I don’t experience a lot of pain. I’m groggy and really tired for a little while, but then I feel like me again. It doesn’t hurt to swallow after the endoscopy, unless I’m eating. Even then I feel it less in my throat and more in between my shoulders for some reason.

Today I received my final confirmation that I still have zero eosinophils after reintroducing eggs and sugar! This means I am one step closer to finding out what my culprit is or if I have more than one problem food. Currently, I decided to bring back almost all my yellow foods from the LEAP MRT. I want to see if the test was accurate for me at all because I didn’t test positive for potatoes, but I’ve ending up having to completely eliminate potatoes. The two big ones in this category are corn and caffeine.

Corn is in everything. It goes by different names, but basically if it is processed there is 85% -90% chance it has some kind of corn derivative in it. I’m super excited to be able to brush my teeth with regular toothpaste. Also, I really want a cup of tea, but I might switch to coffee. I love having milk in my tea, and I’ve read a bunch of blog entries on the taste of alternative milks in black tea. All of them said nothing is quite like milk, and that most overpower the tea.

Basically, my body is rejecting being Irish. No potatoes and no tea. Couldn’t it have rejected it by turning my pasty white skin into a golden tan?! Nope!

I’ve never been a coffee aficionado. The only coffee drinks I have ever drank are the ones from Starbucks that are basically sugar and corn syrup with a splash of coffee for color. So any recommendations for a coffee newbie would definitely be appreciated. I’m just so happy to be able to try a hot beverage again, especially with winter right around the corner.

I will let you know how this trial continues to go. I did add some bacon that is made with a corn derivative, but my body didn’t seem like a fan. Oh well, if at first we don’t succeed, try again. I’m continuing to take it one day at a time and trying to teach myself to hope for the best.

“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.