Playing Russian Roulette

I try to be careful when discussing my journey with MS.  MS has a different plan for each person and the healthiest path is not determined by the patient with the strongest will. This disease is not something you can see with the naked eye, but it is real and the pain and symptoms are concrete.  When my path was altered three years ago, I looked at my life and reassessed my relationship with mind, body and spirit.  

Spiritually, I learned that for me God’s will, or the power of prayer, is not my private genie in a bottle. I can not believe there was once a time in my life when I wasted a prayer on helping my children do well in team tryouts. Sorry girls, you are on your own at tryouts, both God and I have a previous commitment.  I also vividly remember a tearful conversation with my dad regarding my relationship with God.  I struggle with that conversation on a daily basis. One of the things I miss most about my dad was being around his faith and his connection to the church.  I was naive before, and pain was only a pinprick compared  to my life after 2013. My definition of a miracle changed and I now understand that miracles are not perfect packages wrapped up with a bow.

Honestly, my change in nutrition and fitness was an accident.  I always followed a calories in calories out accounting with my nutrition and I exercised everyday without a plan.  I figured if I wanted to eat I should just run to balance out my calories. My weight was never an issue for any of my doctors or for me personally.  I took a fitness job in 2013 that forced me to reassess my thoughts on the subject. I was hired by someone who I considered to be crazy about his nutrition.  He was always talking about sugar in the American diet and he was obsessed with the science of exercise and nutrition.  Along the way, out of respect for his patience and the love of my job, I experimented with the program.  I was not following a diet, I was creating my own plan.  I believe that this relationship was a small miracle.

As my life was moving in a new direction, I listened to the song “God’s Promise” by Ellis Paul on repeat during all my runs. I realized we are not guaranteed a safe life.  We do have control and yet we have no control.  I am still spiritual but my life has forced me to look at this world in a different light.  That shift in perspective wasn’t easy for me to grasp.

In 2014, I felt sick before going into my MRI.  I had been avoiding this disease because life had become so painful. I knew my body was failing me and I had to make changes.  I went for a run in the rain before my MRI and made a promise to myself.  It was my epiphany and I took a photo of that moment. I had made sacrifices to survive the past few years and I was ready to be different.  

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In 2014, my MRI results were consistent with what my body was telling me. My wonderful neurologist looked me and my MRI over and said it was time to start treatment.  New lesions had developed and I was not well. Since I am stubborn, I had already made the decision to try my own form of treatment first.  I asked for one year with no drugs. He was polite, but definitely not pleased with my plan. He actually said, “so you are one of those.” I was aware that proper medical treatment can slow the progression but nothing can repair what it destroys.  I was starting a game of Russian Roulette and was going all in. We parted ways with the agreement to meet again in 6 months.

I came home that day and sent an email to my closest family members.  I let my family know that if they did not bring me joy I was cutting them out.  When I was first officially diagnosed I sent a text to the closest person in my life and she responded with silence.  As time went on, that relationship would alternate been silence and toxicity.  I did not open up to a lot of people at the time, so this was exceptionally painfully.  I would say it was more painful than any of my symptoms.  The decision to be selective with my family and friends was a big part of my healing process.  I am lucky that my life is filled with wonderful people, but to cut one person out was tough.  

I changed my nutrition.  I stepped on the scale and was open with my journey.  I encouraged people to join me and found strength in the success of people around me.  My nutrition is always a work in progress.  In the beginning, I focused on cutting sugar out of my diet and increasing lean protein.  Now, I have eliminated almost all processed foods and cut all forms of sweeteners out of my life.  I have a few cheats a week but let’s just say I like what Tom Brady has to say about nutrition.  There is a reason why there will be no human growth hormone scandal with that guy, even if people will be feeling his balls for the rest of his career.

I assessed my body’s strengths and weaknesses and designed a fitness program.  My workouts focused on balance and building strength in my weakest areas.  I tested the waters with hot yoga.  I understood the concerns with this disease and getting overheated.  I had not experienced those symptoms and for some reason always felt better when I warmed up on my runs.  I was nervous about hot yoga, but I felt great when it was over.

I settled into a routine.  I would be outside everyday for a 4 mile run to soak up the all important Vitamin D.  Sunshine has a big impact on my mood as well.  I would lift three to four times a week focusing on making my weaknesses my strengths. When I lift I add 25 minutes of HIIT training. On the days I did not lift, I try to make it to a hot yoga class.

I surrounded myself with positive energy and love.  I was open with my story and let some wonderful people into my new world.  I continued to put my kids first because they bring me joy.

I missed my six month appointment because of a scheduling issue. I finally saw my neurologist after twelve months. He was pleasantly surprised during my visit and I give him credit for not wanting to be right and just wanting me to be healthy. In twelve months I had lost a significant amount of weight and felt great.   My supportive husband was by my side for this appointment and it was a moment.  At the end of my appointment my skeptical neurologist told me to not change a thing and said,”you still have MS, but you look good.” We scheduled the next MRI for six months.

This past week I went in for my MRI.  I  began to question my decision to play Russian Roulette.  Maybe I was just ignoring my symptoms and the MRI would show the secrets of this disease. I have discovered that I am an expert at lying perfectly still for 75 minutes in that machine.  The techs like to comment on the extent of the exam and I do feel like a warrior when I walk out of that basement at Brigham and Women’s Hospital.  All scans are emotionally and physically draining.  I have run marathons and I feel like this ranks up there with that level of intensity. The MRI results were better than I could have expected.  My disease has not progressed! No new lesions and one past “suspected” lesion was not well visualized. Each lesion is scar tissue and tells me how the disease is progressing.  This was great news.  

After the MRI, the meeting with the neurologist went even better than the scan. We chatted and this time he was ready for my stubborn personality.  He confessed that I looked so good six months ago that he reviewed all my tests just to make sure I actually had MS. He was still confident with the diagnoses and impressed with my health.  We argued about Vitamin D and he eventually won after we agreed that the blood work would be the deciding factor.

After my appointment, I celebrated my body by going for a run and participating in a hot yoga class.  Honestly, I did want to take a moment to celebrate by lying on the couch with a cupcake. Going for a run when I was not in the mood was my little miracle for the day. Now my life is full of small little miracles everyday.

I want to share my journey because I learned so much in the past few years.  My body is a work in progress.  I would prefer not to have this disease, or Lupus.  I would prefer to be pain free and for everyone in my life to never experience a moment of heartache.  I believe that my pain made me stronger for today.  I know to not take the status quo for granted.  

You could be having your best moment right now, so be grateful.

4 thoughts on “Playing Russian Roulette

  1. You are doing great!! I agree with your analogy about the MRIs, and I have now trained myself to fall asleep in there, if you can believe that!! I saw you run past my house the other day and thought how amazing you looked. You are impressive, keep it up and stay strong! You inspire me ❌⭕️

    Like

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