Monthly Archives: July 2017

Waiting in Hope

Posted on by under Life With EoE

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At 1:25 this morning, I was still wide awake. I was up researching more ways corn can be hidden in my food. As my husband slept soundly, I was silently freaking out that my body isn’t healing at all and that any progress I have made is a mirage of a desperately hungry person.

My follow-up endoscopy is on Tuesday, and I’m terrified. Not of the actual procedure, but of what the results will say. Will the results say I’m in remission or at the very least on the road to recovery, or will they reveal I’m as sick as I ever was? My biggest fear is that I will be handed a non-stop, one-way ticket to the Land of Hopelessness. It’s one thing to be unwell for a season, but it’s something entirely different when the cure isn’t even on the horizon.

This last week a friend asked how she could pray for me. I know I have great friends and family praying over me during this tumultuous time, and they will never truly grasp how much my spirit depends on these prayers. Prayers are my life support as my spirit weakens in the face of continued hardship. They push me out of the grave, and fuel me to keep on living. However, I don’t like asking for prayer. It’s always been a deep struggle of mine to admit and concede weakness. God is using this season of my life to teach me I don’t need to be afraid of my weaknesses, and learn to believe that He really is bigger than they are.

Prayer reminds me how vulnerable and desperate I am for a miracle. A miracle that modern science can’t provide. A miracle that I can’t deliver on my own apart from Him. A miracle that only God can perform. I need the supernatural, and I need it at a time when my faith is at its absolute lowest and my fear is at its highest. As she asked how she could pray for me, I broke down crying. I couldn’t hold back the tears any longer. I need God to come through in a way I have never needed before in my life, and only He knows what will happen.

Over the last few weeks, I have spent very little time weeping, which compared to the last few years has been a phenomenon in and of itself. I have just keep pushing forward; running the course set out before me. When I have felt depressed that I couldn’t eat pizza or have a cup of tea, I would hope that by following this plan so strictly that one day I could. I would look forward to the day where I can eat a burger without gulping down a glass of water, so that it wouldn’t hurt so bad going down my throat. Yet, on Tuesday I will find out once and for all how my body is responding, and whether or not my eosinophils have lowered to a normal range.

I would love to write the lyrics of “It Is Well With My Soul” here on this blog, and tell you without a shadow of a doubt that I trust God in all of this. I would love to say that even if He doesn’t remove this burden from me that I won’t lose hope; that I will continue to trust in Him no matter what the results say. Yet, if the results say this intense elimination diet hasn’t helped in the slightest, it will be a blow. It will cut me to the core. My heart will be shattered.

I’m not going to say, “That’s okay. Maybe God has something better planned through my continued suffering.” I don’t think He expects those words from me. I can say that even if God chooses not to deliver me from this (as scary as those words are to type…), that He bled for me once and bleeds for me now. I know He hurts when I hurt. David wrote this about God:

You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book. – Psalm 56:8 ESV

Even as the light fades and darkness crouches in once again, I know God is with me. God wants me to depend on Him, not because He is cruel and aims to pull the rug out from under me. He wants me to know that His goodness and love aren’t built on me and what I bring to the table.

If we are faithless, he remains faithful—for he cannot deny himself. – 2 Timothy 2:13 ESV

Tuesday will be difficult, but the two weeks of waiting after will be much harder.

Please pray that:

  • I don’t preemptively start wearing sackcloth and ashes. I tend to be on the dramatic side. Whenever I read about the people in the Bible that were professional mourners as a young adult, I remember thinking to myself, “I probably have the skill set for that job.” I’m sure in those moments God up in Heaven facepalmed, shook His head, and started to hum “How Do You Solve a Problem Like Maria?”
  • the procedure goes well and that I don’t feel sick after it is finished.
  • my eosinophil levels in my esophagus have lowered to zero.
  • my slight case of gastritis has resolved thanks to the elimination diet.
  • I can add more foods to my limited diet without repercussions and extreme discomfort.

Trial and Error

Posted on by under Life With EoE
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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.