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When the Best Thing You Can Do for Your Illness Is Give Up Control

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The first time I had an MRI I figured it was just a precaution. The results would show that I was an average 35-year-old woman, just like all routine medical tests did.

It was quick, easy and painless and I walked away not expecting much.

My doctor suggested that I get that first MRI after I started experiencing balance and numbness issues following a migraine headache.

Before I even saw the results, I was admitted to the hospital. Three MRIs of varying lengths and levels of discomfort quickly followed.

I got the call with the results of that first MRI as I sat in my hospital bed.

My primary care doctor had seen something that made her suspicious. It could be multiple sclerosis (MS). She wanted me to see a neurologist.

Little did she know I was already several steps ahead of her.

A month later, having been discharged from the hospital with a possible MS diagnosis, I had my most epic MRI. A four hour marathon that scanned both my brain and spine as a contrast agent surged through my bloodstream.

This time I knew it wasn’t just a routine precautionary test. There would be findings. Scary findings.

Black holes. Lesions. Multiple sclerosis. Disease modifying drugs.

These were the terms I learned following that epic MRI. My new multiple sclerosis specialist – a studious looking man with kind eyes – read the results and delivered a definitive diagnosis: both Lyme disease and multiple sclerosis.

Six months later I’ve weathered a pretty significant flare, experienced my first need for mobility aids and started my first disease-modifying drug.

I take a regiment of vitamins every day, I’m on a first-name basis with the staff at my MS specialist’s office, and I’m a regular with therapists ranging from physical to occupational to psychological.

I even organized a fundraiser for MS research.

“I have MS, but MS doesn’t have me,” and all the other clichéd sayings apply.

Jumping head first into MS life is my way of coping and taking back some control from the incurable, unpredictable disease in my brain.

But next week, we’ll mark a milestone in this MS life that I know I have no control over. My first MRI since diagnosis.

The MRI where we’ll see if my chosen disease-modifying therapy has slowed or stopped the progression of my disease.

Maybe it did and I’ll hear the doctor say “NEDA,” or “no evidence of disease activity.”

But maybe it didn’t and we’ll have to discuss a new approach for managing my disease.

For the last three months, a neuropsychologist has helped me handle the anxiety that my diagnosis of MS has triggered.

One constant in those sessions is my need to feel in control. Control is something that a person living with MS very often doesn’t have over their disease or its progression, despite best efforts.

As a Christian, my faith tells me I need to give up that control anyway, and I’m trying. It’s easier said and believed than done and practiced. But I’m trying.

Everyone says that the first year after diagnosis is the hardest and I am only six months in.

I’m quickly finding, though, that trying your best and giving up that illusion of control – which is all it really was to begin with – is the best thing you can do. MS or not.

“Many are the plans in the mind of a man, but it is the purpose of the Lord that will stand.” – Proverbs 19:21

Getty Image by Photo_Concepts

Originally published: July 11, 2018
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