“Are they going to use needles?” Rafal asked this morning of his upcoming evaluation.
“No, what are you talking about? It’s tests…,” I paused. I knew exactly what he was talking about. Although his evaluation pertained to his education, I had referred to it as a test. Over the past four months I have been to the doctor multiple times and sent to the lab for tests. After each set of labs I returned home weak and exhausted. The first draw took thirty tubes.
Rafal feared I was taking him for this same kind of test. I calmed his fears reassured him- NO needles.
Why all the blood work (tests)? I have encountered trials of many sorts in the arena of my health. The tests were to find the cause. I won’t go into the litany of all of the individual tests. Suffice it to say, a written test determines what you know, a lab test determines what your body is doing or not. My body wasn’t doing much.
I was diagnosed with Chronic Fatigue Syndrome in 2004. I hesitate to share that info because the comebacks wear me out! Laugh here!
“I’m tired too!”
“No wonder you are tired, you have seven kids.”
I decided not to hide that info anymore regardless of the come back. I am what I am. I can’t change it. I can’t MAKE people understand the disease. I CAN be honest. I CAN empathize with others who live life burdened with their own thorn in the flesh.
Yesterday I received the results of my third set of labs. My friendly nurse stated it this way:
“You tested positive for celiac. The doctor says if you are not eating gluten-free, you need to start.” And then went on with the rest of the results which I mechanically wrote down.
I wrote Celiac with a giant plus sign beside it. Gluten-free for the rest of my life? The truth is I have eaten gluten-free on and off for seasons of my life but I have always cheated on the diet. I had no official diagnosis, just a small quiet inkling deep inside that I may be gluten-intolerant. After eating gluten free for awhile, I would give in to pressure of friends and family and eat whatever. My first reaction? Denial. The test must be wrong.
After my phone call I headed out to the store with Ania to do the weekly grocery shopping. On the way, my mind rushed through the second stage of grief- guilt. Why did I stop eating gluten-free? Then ANGER. All of the years, all of the doctor visits. All of the complaints,frequenting specialists since I was seventeen and experiencing migraines and profound exhaustion. I stewed in the anger all night, thrashing, wrestling with my sheets and God.
This morning I picked up the book I bought at the Carol Kent conference- A New Kind of Normal and read about women who experienced horrific circumstances and came out on the other side with a new kind of normal. What are the chances that I would have picked that book up out of all the ones on the book table. What are the chances that I bought a book at all?
I’m still moving through the stages of grief. I am like Monk in the episode when he loses his therapist. He quickly cycles through the stages of grief over and over.
My new kind of normal means eating a gluten-FREE diet for the rest of my life. It also means that the myriad of terrible symptoms that have been plaguing me for so LONG may disappear (not totally accepted that yet). The bottom line, as my sister Anne said yesterday, “God is still sovereign”. I’m still grappling with that one too, but when did I think I had any power in that arena?
The other outcome of this last set of tests has been the renewed vision of writing about living with a chronic illness. Most of the time, I have hidden it. It’s time to be real. More on both my irrational hopping through the stages and my new normal coming soon!
Man’s steps are ordered by the Lord. How then can a man understand His way? Proverbs 20:24