To relate to my story, you need to understand me.
My parents were divorced when I was 7 years old. My Dad was in the military and traveled all over the US and abroad. Following the divorce my Mom made the decision to move us back to the Midwest. My Mom worked very hard as a single parent working 2 to 3 jobs at a time. Although I was the 3rd child out of 4, I took on the care taker role naturally, and was nicknamed Mother Hen. Both my parents exemplified that through hard work anything was obtainable. I was the first to graduate from college in my family.
I married Alan my high school sweetheart at the age of 18, and we have now been married for 22 years. Once I obtained my career we made the decision to start our family. This decision took us through 5 years of heartache and pain. Our first pregnancy ended in a miscarriage. Our second pregnancy was difficult, as I was very sick and suffered from borderline toxemia and diabetes. However in July 1989 we were blessed with Amanda, our beautiful and healthy baby girl.
On September 20, 1993, after another difficult full term pregnancy and 3 days of labor, we were anxious for the arrival of our second child. We were heartbroken when during the delivery the doctors discovered our beautiful Pamela had a fatal birth defect, and there was nothing anyone could do to save her. We waited a year to try again, only to have all 3 pregnancies end in miscarriages during the first trimester in that year. Our hopes and dreams of our perfect family were shattered. Shortly after this I was blessed with a "God Wink" (a coincidental intervention from God). While visiting a cemetery I was drawn to a tombstone. The tombstone had a large and small heart, inside of the hearts was a Mama horse and a baby horse that were nuzzling their noses together. In reading the tombstone I learned the story of a mother and her daughter both dying during birth.
I knew this 'God Wink" meant that is was time to give up my dream of more children, to not look at the glass half empty, but rather half full. I knew God was with me, and that I probably was not supposed to have any children; however he had blessed us with Amanda. Our faith in God, love for each other, and the support of our family and friends sustained us, and helped us to heal from this heartache. We made the most of each day and the years flew by. In honor of our 15th wedding anniversary we took a 4 day cruise to Mexico. We enjoyed horseback riding, snorkeling, dancing the night away and spending hours in the outdoor hot tub viewing the most breathtaking sunset we had ever seen. We were so happy.
The very next day our world was turned upside down. I woke up completely groggy and tired. I thought, I must have had too much fun. While trying to take the steps to breakfast my legs felt so heavy and swollen, I could barely lift them. It took an enormous amount of energy to get up the stairs. Upon returning homes things worsened as I was having trouble sleeping, had numbness and tingling on my left side and was trembling. We feared I might have caught some virus in Mexico. We spent 2 months attending doctor appointments and hearing speculations on what could be happening to me. Some doctors said it was all in my head, and that I was fine. What was a physical challenge now became an emotional challenge. Was I just imagining all of these strange symptoms?
Then through an ER doctor "God Winked" and brought us to Dr. Garnaas, a neurologist whom we call our guardian angel. I told her I would not go over my symptomatic issues, but rather wanted to share the development of my days. She listened intently and asked for input from Alan. She performed sensory and balance tests on me. She shared her suspicions of MS with us. She wanted to do some further testing for certainty, so I had a spinal tap and an MRI of my spine and brain.
On April 20, 2001, the test confirmed the suspicions; I heard the words "You have MS." At first, it was a relief to finally have a name for what was going on with me. This however was soon replaced with anger, fear and depression. I cried for 4 days straight, all I could think was the worse, I feared being confined to a wheelchair for the rest of my life, unable to walk, dance or enjoy activities with my daughter. At one point I was driving home from work on a gravel road, and my head was filled with thoughts of how easy it would be to crank the wheel and lose control of my vehicle. I was angry; at 33 I felt like I was being cheated out of life.
I immediately started a week of IV treatment of steroids and during my last treatment, "God Winked" upon me again; he brought Susie into my life. Susie's smile radiated the room and the twinkle in her eyes was contagious. Susie had been living with MS for 30 years. When she was first diagnosed experimental treatments were only available via the lottery system. Susie felt she was doing good, and unselfishly declined the treatments for someone who needed them more. In recent years her MS had progressed, she was confined to a wheelchair with no movement in her legs, she had limited movement in her arms and had difficulty speaking and swallowing. She shared with me that giving up her chance for treatment was her biggest regret in life. Despite her struggles, Susie still offered me Hope!!!
When I met with my doctor to discuss what next, I had no doubt in my mind I would go on the treatment that might reduce the progression of disability with my MS. "To live today with NO regrets, not to look back and say I wish I had done that, but say I am glad I did." In time I started regaining my strength and energy. I started being more optimistic. I researched information on MS, and became knowledgeable. Knowledge is Power and most importantly I learned how to help myself.
I had to learn that my energy should be compared to a checkbook. And no matter how much you wanted to contribute, you could not give to everyone. I had to learn how to say "NO" and not feel guilty about that. I had to take care of myself first. I had to learn to listen to my body, and that when it was tired I needed to rest. That my family and job would be o.k. if things were delayed, that the housework and dishes could wait, that plans can be rearranged.
I prayed hard, I bargained with God that if he gave me 6 active years with my 11 year old daughter Amanda, until she graduated from high school, that I would accept whatever my fate was. I have now surpassed that 6 year milestone, and am on bonus time. MS has given me the appreciation of the things I used to take for granted. MS has taught me it is o.k. to be selfish to find the time to exercise, eat right and get plenty of rest. I have MS, but MS does not have me. My life has not stopped; I can keep living and still have big dreams and goals. When I was healthy I was inspired by my older brother Larry when he completed his first marathon, and then followed up with others. Now, the thought was really spinning in my head could I do this, and make a difference at the same time.
I firmly believe, "The happiest people don't have the best of everything, they make the best of everything." In the spring of 2005 I ran my first half marathon and raised funds for MS, that is how "Making MY mark against MS one step at a time" began. In appreciation of how well I was doing and as a thank you to all those that supported me, I wanted to give back. In the spring of 2006 with the love and support of my family and friends I completed my first full marathon. This was an accomplishment I did not believe I could do healthy, let alone with MS. I tell people I don't run fast, just far. The joy of the day will remain with me for the rest of my life. If my MS ever requires me to use the assistance of a cane, walker or wheelchair, I will proudly be able to show my Marathon Medal and say "I RAN A FULL MARATHON," & I am glad I did this. I completed my second marathon in October of 2007 at the Chicago Marathon, a marathon that became national news, as it had over 40,000 participants, experienced record breaking temperatures of almost 100 and sadly suffered one fatality.
Running has greatly enriched my life with new friends, some of which have formed the "Women High On Running" group. Running gives me a sense of freedom as I feel the wind blow through my hair and hear the thumping of my feet as they hit the pavement and enjoy the beauty and nature around me. Additionally it has given me an avenue to bring awareness for MS, while raising funds for a cure in the process.
To date I have completed 2 full marathons, 7 half marathons, a sprint triathlon, several 10k's and 5k's, am an MS Advocate Speaker, was honored at the 2006 North Central Chapter Achiever of the Year, have volunteered for many MS Events, served on the MS Walk committee and more importantly have raised over $13,000 for MS. My next goal is to bike 150 miles in 2 days, not once but twice. First in July for the 2008 ND "Ride the Wind" MS Bike Ride with Team Road Rash and then again in October for the 2008 Tennessee "Jack & Back" MS Bike Ride with Team BAMS (Band Against MS), Clay Walker's non profit charity. Additionally I will be doing the Average Joe Triathlon the end of June, the Great River Relay in August with 11 other women and possibly the Beardsley Half Marathon in September.
I have suffered 2 exacerbations since my initial diagnosis, I continue to struggle with fatigue, insomnia, vertigo, numbing and tingling on my left side and overall body trembling. I have to be cautious about overtraining and overheating. I have to make sure I am getting plenty of rest, and most importantly that I am listening to my body and know when it is not a good day to train or work out. I have to deal with the occasional side effects from my medication.
However, I will continue giving, as long as I AM able. I know personally that MY future movement is NOT a guarantee. I am blessed to be doing so well, and having a wonderful support system of family and friends. In appreciation of that I will do my part. It is my ultimate hope that with fundraising and continued research, one day we will live in a world free of MS, where no one will have to hear the words "You have MS" and fear what that means to them or their loved ones. Some say I inspire them, I don't think so. I am just one person trying to make a difference, offering hope to others. If along the way, my story touches someone, than I have achieved MY goal of "Making MY mark against MS one step at a time." I believe we all have the ability to somehow make a difference.