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.
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 has to be enough.