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)

Trial and Error

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“This is the land of Narnia,’ said the Faun, ‘where we are now; all that lies between the lamp-post and the great castle of Cair Paravel on the eastern sea.” – C.S. Lewis, The Lion, the Witch and the Wardrobe

Sometimes I have so much to write that I’m paralyzed by what to say first. The past couple of weeks have been filled to the brim with blessings and disappointments. More sweet things than sour ones.  It reminds me of when I was a kid, and my parents would ask me, “Would you like to hear the good or bad news first?” There is probably some kind of psychological truth revealed by your preference.

I can’t remember which one I liked to hear first as a child, but as an adult I would rather hear the bad news first. Rip it off like a band-aid. Praying to God the whole time that the good news softens the depressing blow.

If I have anything crummy to report, you should know by now it probably has to do with my health. In my last blog entry I excitedly talked about adding potatoes, apples, and olive oil to my diet. Unfortunately, my body hasn’t been a fan of all three. Baked and fried potatoes gave me some of the worst EoE episodes I’ve had in a while. I don’t know if my body wasn’t ready for the thicker texture, if Aunt Flo messed me up (Sorry, but not sorry. Periods are a real part of life. Get over it.), if I should have bought organic (apparently, potatoes are the #1 vegetable you are supposed to buy organic…didn’t know that until after the fact…of course…) or if my non-organic extra virgin olive oil contained corn oil (Olive oil sometimes contains soybean, corn, or other vegetable oils. They don’t have to claim it on the bottle. Awesome, right?).

I have kept organic apple juice for the most part (Uncle Matt’s products have worked well for me for both orange and apple juice.), and am still testing out if that is safe. Also, I tried Lay’s Simply Potato Chips, which only has 3 ingredients: potatoes, expeller-pressed sunflower seed oil, and salt. Irony of ironies, I had no EoE episodes with these chips, but I think because it’s a  simple carbohydrate (I am still not eating refined sugar or any other simple carbohydrates.) I experienced an intense food coma 15 minutes to a half hour after eating them. I think my body just isn’t ready for them, so as much as I would love a “cheat food” it just isn’t worth it.

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Loving my Shop Ashley LeMieux top! I’ve replaced food with shopping. That’s healthy, right?

Now for some news on the positive side, I have lost more weight, and am now in the high 160’s. As glad as I am that I’m losing weight, there is no way I can sustain this diet long-term. Basically, I’m medically anorexic. I’m not getting enough calories everyday to function at a normal energy level. However, I will say the limited diet definitely feels like it is helping my throat and stomach to heal. The only way to know for sure that this intense elimination diet is working is to get a follow-up endoscopy. I made an appointment last week, and my gastroenterologist was really supportive and impressed with everything I have been doing. She understands and agrees I can’t maintain this current diet long-term. She scheduled me for an endoscopy on July 25th. By then, I will have been off all common allergens and caffeine for over 12 weeks as well as corn and refined sugar for 8 weeks.

This diet has been both physically, emotionally, and mentally taxing. It’s not for the faint of heart. If you have EoE or another dietary related illness, and are starting an elimination diet, don’t give up! Keep fighting. You will not always feel great on this diet, especially at first. I’m not going to sugarcoat it because most likely you can’t have sugar. Sorry bad dad joke.

I have both good and bad days. At the beginning it was a string of bad days taunting me. Now the good days are more victorious. My diet may be limited, but my spirit has started to be unleashed from the chains of the past 5 years. As my throat and stomach recover, my unshakeable anxiety and depression have been slashed and cut down in size.

I can sing again. Joy is awakening from her long slumber.

LEAP MRT Diet Update

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Since yesterday, my diet has been free of all common allergens (gluten, dairy, soy, eggs, peanuts, tree nuts, fish, and shellfish) and caffeine for 8 weeks. In addition to this, on May 27, I also eliminated all my moderately and strongly reactive foods indicated by my MRT blood test results (lettuce, black pepper, blueberries, caffeine, cashews, cola, corn, garlic, grapes, green peas, hazelnuts, hops, lamb, mango, millet, mustard, sulfites, turmeric, and vanilla) . Most of my food cravings have died away, but two remain as strong as ever. Everyday I wake up thinking, I can finally make myself a cup of tea, and then realize I can’t. The other is bread. Not donuts or pastries so much, but like a French baguette from Panera Bread. Just pure gluten! Yum! Alas, I can’t have either of those yet, but this week I did start Phase 3, which brought with it potatoes (imagine me saying “potatoes” with an Irish accent)!

fba33bf40e8a971135171038a5a7724dWhen it comes to my affection for potatoes, I’m a walking Irish stereotype. As a child, all my brother and I wanted to eat was meat and potatoes for every meal, which according to my food sensitivity test results are fantastic for me! We would tell my Mom that we wanted “mashed potatoes,” but she knew we meant baked potatoes that we would mash and obliterate ourselves. It makes me laugh because most of my non-reactive foods are the foods I see most often in Facebook rants, and the foods that are supposed to be “anti-inflammatory warriors” wreak havoc in my body.

For example, I cannot tell you how many social media posts I have seen on the ills of gluten and how NO ONE should eat it. I wonder if they even sell wheat products in California anymore. Every Hollywood starlet talks about how she avoids gluten, and that is how she stays so trim. Let’s be clear, if you have Celiac Disease, a diagnosed gluten allergy (Sorry WebMD doesn’t count), or an actual gluten intolerance, wheat and the like need to be completely avoided for very legitimate and serious reasons. However, cutting gluten from your diet isn’t always the healthiest option.

Personally, every time I ate gluten-free products in the past, I would feel sick shortly after with strange gnawing pains in my stomach. I thought this was weird. However, after my blood test results I began to understand why. The LEAP MRT 150 tests a number of different grains, both gluten and gluten-free. I tested on the higher spectrum for almost every gluten-free grain, except for oats and rice, and two of them cause bad reactions in my body: corn and millet.

No diet is one size fits all. That’s why I truly appreciate the LEAP diet. It is personalized and specialized for my body. Many autoimmune cleanses and diets are too generalized. It might work for you. It might not. Or worse, it might make you sicker. If I had decided against this test and just followed the typical diet assigned to Eosinophilic Esophagitis patients, I wouldn’t have gotten better. Actually, I can tell you from experience that I didn’t get better. When I followed the typical protocol, I would have good days followed by an agonizing EoE episode. I felt even more miserable than before I changed my diet because I couldn’t understand why I was still experiencing terrible symptoms. I had cut out all gluten, dairy, soy, eggs, peanuts, tree nuts, fish, and shellfish. Why was I still suffering?  I had no clue that the salads I was eating, the corn I was consuming, and the garlic and mustard in my baked beans, were only exasperating my problems.

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Now I’m not only avoiding eating dishes that cause inflammation, but I’m eating foods that promote healing. I’m no longer playing a torturous game of “Would You Rather.”  How do I know the diet is helping? Here are my biggest symptoms that I had before starting this process:

  • Difficulty Swallowing – When I would eat, food would get lodged in my throat. It was scary and it hurt a lot. It went from being a rare occurrence to happening all the time no matter what I ate. I never ate without a can of Sprite to drink. The bubbles helped create an up and down motion in my esophagus to get my food to move into my stomach. Now I can eat almost a whole meal without drinking water, and I’m not in terrible pain an hour after eating.
  • Insomnia – I had this constantly, especially when I went through any kind of hormone shift in my body. I have had only 1 episode in the past 2 months.
  • Migraines – Sometimes they were as often as multiple times a week to as few as a couple of times a month. After eliminating all my food and food chemical sensitivities, I’ve had only 1 bad migraine/headache in the past 4 weeks.
  • Depression – I cried about everything. I felt hopeless. At my lowest I wished I could just end it all. I felt like I was already dead. Now my moods are more even and balanced. I don’t feel like I’m riding a disastrous see-saw that is about to throw me off at any moment.
  • Anxiety/Panic Attacks – This was my absolute worst symptom. I had these daily multiple times a day, especially when it was time to eat anything. I lived in constant fear and dread that every breath was going to be my last. They would last hours sometimes, which isn’t normal. At most, they shouldn’t last more than 30 minutes. My anxiety has started to lessen with each day, and my last eventful panic attack was at the start of the diet.
  • IBS – Since I’ve had my gall bladder removed a decade ago, I developed this lovely and ladylike struggle. Over the last few years, it has gotten worse. There have been times where I’ve had to run to the bathroom and just made it (TMI…sorry). Now, I haven’t had even 1 episode!
  • Fatigue – For the last year and a half, I have gone from little energy to no energy to “What is energy?” I knew I was dealing with chronic fatigue because of all the above symptoms. I wasn’t functioning. I just felt winded all the time. Now I’m starting to feel like me again. Taking a shower doesn’t feel like an Olympic event (I wish I was joking about this…)

Since January, I’ve gone from a size 14 to a size 10, and from 212 pounds to 172 pounds. If you are battling serious health issues, please look into the LEAP MRT 150 test. If you have EoE, you need to work with a nutritionist as well as an allergist and gastroenterologist. It’s amazing how much damage the wrong foods can do. Yet, the right foods truly are the best medicine. Here is the website for the nutritionist I consulted with in Atlanta: http://nicolesnutrition.com/food-sensitivity-testing/. Even if you aren’t located in Atlanta, she may be able to work with you, or at least be able to refer you to a dietician in your area.

I’m still on this journey, and have a long way to go. Hopefully, as I add new foods, my body responds well. Even though this has been an uphill battle and the least fun diet I have ever been on in my life, I’m starting to see real results.

Eating Beans + Riding Segways= The Good Life

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Atlanta at Sunset

I love city life. The hustle and bustle. The constant noise and movement. Each day is different, even if it is slight and almost unnoticeable. In this season of life I appreciate the beauty of transformation. Sometimes I want to freeze moments in time and hold onto them forever, and other times I wish I could press a fast forward button such as when I’m in line ANYWHERE. Usually, I’ll walk with JJ to a checkout line, and then JJ will turn around and suddenly I have disappeared only to re-emerge once all the items are paid for and it’s time to leave. Patience has never been my virtue. I stopped praying for patience because usually God in His infinite wisdom allows circumstances in my life that require me to develop patience.

As I wait and pray for complete healing, I have decided to do my best to live fully in this body. I’m on Phase 2 of my individualized LEAP MRT Diet. In addition to turkey, pork, beef, oats, tomatoes, onions, green beans, cucumbers, oranges, strawberries, pineapples, dill, basil, and cumin, I get to add rice, spinach, celery, pinto beans, bananas, and sesame. I’m living the dream! Nightmares are dreams, right? Just kidding…I was most excited about pinto beans! Next phase I get to add garbanzo beans, and you better believe I’m making my own hummus. Still struggling with feeling hungry, but that’s to be expected.

I got to cross some awesome activities off my “Atlanta Bucket List” this past weekend. On Thursday, JJ and I segwayed (a verb which means to ride on segways – created by the Shakespeare of her time) to Piedmont Park. JJ has done this multiple times, but this was my first trip riding all the way to the park. I made it! And drum roll…I didn’t fall! I call that a very successful trip. We rode to the park to watch the Atlanta Symphony Orchestra perform a free concert. You know we are classy like that.

It didn’t disappoint. They almost canceled because of bad weather, but the rain held off and we all got to enjoy beautiful music out in nature. Classical music is wonderful, but I get bored very easily. Riding the segways around the park rather than sitting down to watch them play made it more fun and whimsical. As we rode up and down the winding pathways, it felt as if the musical selections were narrating our mini-adventure through the park.

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Segway Riding At Its Classiest

Then on Sunday we were even more ambitious, and did a 7.25 mile ride! You can just imagine how exhausted we were after all that…standing. All joking aside, though it isn’t much of a workout, you definitely feel it in your legs. Learning to ride a Segway is really easy. It feels very weird and awkward at first, but each time you get on it you feel more comfortable until it feels like second nature. You adapt to bumps and learn how to stop as quickly as possibly if you see something that you can’t go over smoothly.

We rode to Piedmont Park to connect with the Atlanta Beltline. If you live in Atlanta or are planning a visit to the city, it’s a great place to walk(you, yourself, your dogs, etc.), run, or ride a bike.  Even and nicely paved lanes made the ride enjoyable, and there were interesting places to stop and take Instagram-worthy photos. I was sweaty and hot, so I didn’t really want this commemorated for all time on social media. Piedmont Park in Atlanta is very well known, but Historic Fourth Ward Park is a hidden jewel. The Atlanta Beltline takes you right to it. It’s a great place to walk around, and take a breather. While we were there, there was a photographer taking pictures of a model. With so much variety in backdrop options, I could see why they chose that location.

Still feeling energetic we decided to ride to one of JJ’s favorite juice bars. It took us in the direction of the Margaret Mitchell House, so of course I had to stop to take in this architectural sweetheart. Side note: One of my absolute favorite things about historic cities is the architecture. There are so many different styles to admire, and each structure is unique and beautiful in its own way. Along the way, we got asked several times about our Segways. If you are looking for ways to meet new people or start a dialogue, pets and tech gadgets are great icebreakers.

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The Margaret Mitchell House

All in all we had a memorable weekend enjoying our new city. Segways and pinto beans for the win!

 

 

 

 

Moving Forward

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Driving to the ATL

On April 18, 2017 I was officially diagnosed with Eosinophilic Esophagitis (EoE). To say it has been a long road would be an understatement.  When my gastroenterologist said the words, “You have EoE. How did you guess that’s what you have?”  JJ sat speechless in his chair beside me as her words enveloped the room. I burst out in tears. I couldn’t hold the frayed seams together anymore. Finally, a name for the pain, the suffering, the heartache. FINALLY.

Unfortunately, diagnosis is only a small first step in a long process toward healing and remission. After getting diagnosed I made an appointment with an allergist to confirm through testing that I don’t have any traditional allergies. I’m one of the blessed patients that doesn’t have any IgE allergies on top of EoE. An IgE allergy is an immediate allergic reaction, such as breaking out in hives, wheezing, experiencing stomach distress, and at its worst, anaphylaxis. EoE is a delayed allergic response that causes swelling in your esophagus. So often I would say to JJ “I think my throat is closing” and his response would be: “How could your throat be closing? You’re talking!” With EoE my esophagus is spasming open and shut, but it’s not the part of my throat that controls breathing or talking. EoE is often referred to as “asthma or eczema of the esophagus.” This disorder isn’t life threatening, so you’ll live. You’ll just wish you were dead. Better, right? Bear with me and my sarcasm.

Even though I don’t have any traditional food allergies, it doesn’t mean I’m home-free. This is where this disorder gets really fun. You get checked for IgE allergies, but they don’t really play a part in EoE symptoms. EoE is a delayed reaction and most allergy tests look for an immediate reaction. The only way to find out what foods might be triggering EoE episodes is through an elimination diet. The first step is eliminating all common allergens from your diet for 6-8 weeks.

At the beginning of May I said so long to seafood, peanuts and tree nuts, eggs, soy, gluten, and dairy! I just hit the 6 week mark, which means I can start adding them back into my diet one group at a time every two weeks. By doing that I can monitor if my symptoms get worse. I also decided to meet with a nutritionist and get tested for food sensitivities.

Food sensitivity testing is very different from allergy testing. One of the big differences is insurance doesn’t cover it. Major bummer. The other main difference is sensitivity testing looks more at what is causing inflammation in your body, not what is causing an IgE allergic reaction. It’s a helpful test for EoE for that very reason. If you suffer from unexplained migraines, IBS, Fibromyalgia, or a host of other inflammatory illnesses, you should look into the MRT LEAP 150 test.

The LEAP 150 test tests 150 food items and food chemicals. Everyone’s results are different because it is based on your body’s chemistry. Red items are your most reactive foods and chemicals. Basically, these are the items your body hates the most. Yellow ones are moderately reactive. These usually depend on how much you are consuming in your diet, so you have to be careful not to eat them too much or too often. Green ones mean your body has no inflammatory reaction, so these will make up your diet entirely for the next 3-6 months. This way your body can begin to heal and recover.

Here are my results:

Lettuce was a shocker. I thought lettuce was supposed to be the healthiest food you could eat on the planet. Apparently, not for my weirdo body. Also, I never knew how much corn is literally in everything. It’s like the ninja of vegetables. Crouching Cornstarch Hidden Corn!! It hides in the oddest of places like toothpaste and even bottled water! In the end I could write an ode proclaiming my love to most of these foods and food chemicals, but I will spare myself the embarrassment. Let’s just say I thought we were friends, and they turned out to be foes in disguise. Very Katy Perry and Taylor Swift dynamic.

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LEAP Diet Approved Meal – Ground Beef (No Oil) with Onions and Tomatoes and a Side of Green Beans

I just finished Phase 1 of the Diet and have moved on to Phase 2. There are 5 Phases. I start by eating my lowest reactive green foods, and each phase bring more foods into my diet again. I have to keep away from all my yellow foods for at least 3 months, and my one red food for 6 months. I’m keeping a food journal to keep track of how my body responds in each phase.  The most boring food journal on the planet. Somewhere Tom Haverford is whining.

Having to cut these foods out over the last 2 weeks has been tough. I have lost what little was left of my sanity at times. My 30th birthday sucked! I cried most of the day. If I wrote a book about this process, it would be called, “And Then I Cried.” Yet, I have seen real results since following the MRT results. Zero migraines and my EoE episodes have been less frequent. My trips to the bathroom have been way less eventful (TMI…). Also, reoccurring neck and joint pain have minimized to almost nothing. Since January I have lost 40 pounds. Mostly because of how sick I got at the beginning of this year (I wasn’t able to eat much), and then the diet definitely kept the weight loss ball rolling.  It’s crazy how much damage food can do when it doesn’t agree with your body. I’m taking it day by day. One bowl of gluten-free, sugar-free, flavor-free oatmeal at a time.