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Good Good Vibrations! Tales from the Neurologists office

29 Jan

Last week was my second visit to the MS clinic. On my first visit, my father accompanied me for moral support.  This year, I was going to the appointment alone.  Last year, the neurologist looked at my scan; half listened to my concerns, told me that MS is “unpredictable”, but I will be fine. He told me that I won’t have a relapse for ten years and I was dismissed. I left baffled. My Father and I created the game MS neurologist. I ask Dr. Neurologist Dad, “Will MS turn me into a jelly bean?

Dr. Neurologist Dad says, “It is unpredictable”.

Will I turn into a killer robot?

He responds, “MS is unpredictable.”

It is a game that makes me laugh. I need to laugh because I am too upset and too scared.  I didn’t know much about MS, but leaving my neurologist office, I felt like I knew less, except “MS is unpredictable.”

This year I was prepared. He was not going to dismiss me so easily. Armed with the dates of my relapses, a list of my symptoms and a few key questions, I was prepared. He was not going to dismiss me this time!

I arrive at the clinic and see a familiar face. A woman that was at my first support group for newly diagnosed people was in the waiting room.  When I met her she had had Relapse Remitting MS for three years, in September they switched it to Secondary Progressive MS. Instead of discussing her bad luck or how much her life sucked in a wheelchair, we talk about gratitude. Gratitude. Imagine that? Gratitude. Throughout this past year, I have learned that practicing gratitude and reaching out to my trusted friends and family members is my key to surviving this “unpredictable” disease. My awareness for the smallest pleasures has heightened. I stop. I enjoy the sun breaking through the trees.  It is a mental exercise being positive. I always pat myself on the back for my positive attitude and resiliency.  The woman in front of me, with Secondary Progressive MS deserves a metal!! She closes the door on the negative thoughts and opens the door to the positive thoughts. Remarkable. We both acknowledge that MS sucks. She says when she is angry, she allows herself to cry and get angry.  Then it is over, she does not allow her frustration with MS to control her life. I share my bubble technique. “What is the bubble she asks?”

I tell her, “When I am truly frustrated with the MS, I tell myself I am in a bubble.  I get as sad I need, or as angry as I need, or as self pitying as I need in my bubble. When I am done and I have exhausted all my negative feelings. I take a deep breath. I extend my finger towards my invisible bubble and I burst it. The invisible bubble pops. I move on.”

She laughs and tells me she might try the bubble technique one day too.  My Neurologist calls my name.

I walk into my Neurologist’s office, prepared for him to dismiss me again. I am feeling great today. First thing he says to me, “I am not happy you had a relapse”. Like I could control it, but then something happens. Something that is so surprising to me, he starts taking my concerns seriously. It throws me off of my game. I have a planned speech in my head and notes. He baffles me again, but this time by his concern. I am thrown when he starts testing me. He says, “touch your nose, touch my hand, push my hand, don’t let me push down your legs, do you feel this…”

Crap! “No.”

I don’t feel the metal vibrations on my left foot. This surprises me. I chuckle and say, “This is a placebo right? You’re not doing anything and that is why I can’t feel it.”

“No. You vibration test is down from last year. I am ordering a second MRI. We may need to change your copaxone.”

Then he answers all my questions, he even smiles. Leaving his office, I think MS may be unpredictable, but so are the neurologists. That night, I play the vibration test over and over again in my head.  My feet for the past month and a half constantly tingle, but they do not stop me. I never think much of it. I decide I need to do my own vibration test. I get my “toy” that vibrates. I place the toy all over my feet.  Last year, after my appointment I felt helpless and sad that I had an “unpredictable” disease, this year I am putting a purple vibrating “toy” under my feet to see if I can feel it. MS is unpredictable.  In the mean time, I will continually practice gratitude and my bubble technique.