Let Me Introduce Myself, I am Titanium, I am Kinky, I am Magnetic

On the bell curve my life would be about average. My math ability would be slightly below, verbal ability slightly above, but most everything else about me and all of my experiences would be considered right at average on a bell curve. That is until I faced my 49th year of life. Then the world I knew shifted on me, and I found myself having experiences that were considered statistically rare. Oh, how I longed for the top of that bell curve again.
In 2010 after an MRI that both my doctor and I thought was going to show a simple pinched nerve, I got a call from my doctor saying, “well, this might not be life-threatening, but it will be life altering.” She was right. From February 2010 I have been on a medical roller coaster ride.
Between 2010 – 2012. I have had one surgery to partially remove a benign tumor on my cervical spine. Thirty percent of it was too dangerous to remove. This left me with 14 titanium screws. Another surgery to implant a shunt in an arachnoid cyst that pushes on my cervical spine. A third surgery to fix the tubing on that shunt when it kinked, like a hose kinks, and a fourth surgery to put a magnetic valve on the shunt to stop it from over draining spinal fluid into my pleural cavity, the lining of your lungs. So in two years time, we could say that I am titanium, I am kinky, I am magnetic. I am basically bionic. And now that I box well ,you might not want to mess with me! Lol. For the rest my life I will have a tumor on my spine that threatens to again grow and a cyst that will always need to be controlled by a shunt.

I kept looking for the light at the end of this medical nightmare. I wanted it to be over. I am so grateful for all of the people who stood beside me and helped me through those years. It is humbling to lose your independence.

With the next few years my health continued on that roller coaster ride. A little better at times it seemed, but mainly a series of bad news. Eight times I had to have my lung drained due too shunt malfunctioning. This caused my brain to sag. Yes, at an age when so many other things were sagging, my brain was sagging too. Lol Most troubling was that I was experiencing new symptoms that my doctors could not explain, and they didn’t seem concerned. I went to Dr. Google. I am notorious for getting myself in a frenzy and diagnosing myself with all kinds of conditions I don’t have going to Dr. Google. Unfortunately, this time Dr. Google was right on. The first time I verbalized my suspicion was to my mother, and I expected her to say that is ridiculous. Instead she held me and said if you have this, then it will be all right. My symptoms fit Parkinson’s disease perfectly. Ok, God, really?
A tumor, a cyst, and now Parkinson’s disease? What about the lottery or Publishers Clearing House Sweepstakes, winning at slots in Vegas? I promise could’ve handled that. That is why I call my three diagnoses “the trifecta.” What are the odds?

I found refuge in my closet. My favorite place to cry. Often I would hear the words, “mom is crying in the closet again.” I watched my body succumb to to the attacks of Parkinson’s. I started to walk with a cane, I was losing my balance, and I had constant fatigue. My gross motor movements were slow and difficult, and my lack of hand function made me believe that I would soon have to quit my profession of being a school guidance counselor. A part of my life that I love. The medications prescribed to me were not working and my doctors were unsure which of my three diagnoses were causing my symptoms. But with the encouragement of friends and family I got out of that closet and fought physically with exercise and battled my way to Cleveland Clinic. On July 28th, 2015, I went to Cleveland clinic to see a movement disorder specialist.

In the beginning I did not respond to Levodopa, the standard Parkinson’s med, and so when I left that day with a levodopa prescription, I was not too hopeful, especially knowing that In five days I had to go back to work.
The next day I filled that prescription and took the first pill and in two hours after taking that pill, my body was back to almost full functioning. I was better than before my first surgery in 2010. With that appointment only being five days before my first day at work and thinking I was possibly going to have to quit my job, this was nothing short of a miracle to me. I can move, dance,shout, sing sorta, swing my arms when I walk, gesture. All of those things that I took for granted before. I still have Parkinson’s disease and it is a regressive disorder, but for an undetermined amount of time, i am better, but I will regress again at some point. As much as I fight, and oh I will, There is not a cure YET. One of my fears I had to over come Is …..Some Day when I can no longer button my shirt, walk unassisted, speak up so people can hear me, when my body fails what worth will I have to others except to be a burden.
I have changed that perspective after carefully watching the world around me. I am reassured that each of us has a purpose and gifts in this life and we each have a lasting legacy of the good works until our last breath. Yes, if you have a loved one lying in a nursing home with Alzheimer’s, Parkinson’s, ALS, Cancer, I could go on and on, they are teaching us something. Listen and learn. A big lesson: SLOW DOWN
Take time, be still, , reach out, don’t sweat small stuff, appreciate, And LOVE.
Well, that’s me. Hello, my name is Lisa Cox. That’s my story. That’s my fight. That’s why I write this blog. And your name is? What’s your story? I welcome you to share it. There is healing in our stories. It’s nice to meet you!

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Author: parkinsons95

I used to be a stay in the lines, go with the flow, don't make waves kind of person. I have changed. Parkinson's is one of the many cards dealt to one in life that can shift the mind set. I am now a find the line and push beyond it, swim against the flow, and waves? I will splash and make as much joyful noise as I can, while I can, fearlessly. Brave.

2 thoughts on “Let Me Introduce Myself, I am Titanium, I am Kinky, I am Magnetic”

  1. Lisa my dear, What a statement and what a journey. I remember the first time you went to see Dr Pat (your hair stylist at age 7), now a real doctor. You thought you’d pulled a muscle or something from jogging. My where it has lead and how you have overcome. Good luck, the journey is never easy, but so rewarding in many ways. Thus your blog. Struggles always there, as I have found out in the last month with Gary. May God continue to Bless you both and bring healing. JK

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    1. JK,
      I love the way our lives have been weaved together over the years. You are family. Some day you will see a post titled ” The Empty Salad Bar”. Lol. Have hope. The Cox family loves you all. Lisa

      Like

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