Welcome to my world and story. Since 2000, I have had quite a few experiences and lessons in living with the unpredictable disease of multiple sclerosis. I am familiar with the ups and downs, have experienced some of the most frightening symptoms, have managed a slew of symptoms, been faithful for years with treatment, and then gave myself a hiatus after ten solid years of shots. At one point, I found myself in the midsts of the dark side and returned with a determination to choose happiness, knowing each day is a gift. I hope my story will help others find hope and the ability to define themselves for who they are rather than by a disease that walks the steps of life with them.
MS raised its ugly head for me when I was 15 years old. Cognitive issues made it difficult for me to understand language. Like most MS symptoms, it came and went. My ability to understand speech was much like listening to someone speak in a foreign language. I could hear them, but nothing they said made sense. It was not consistent. Frustrated and confused, I told people I couldn’t hear well. In my mid-30s, the speech issue returned, and I then understood the cause of my issues as a child – MS. I understand why MS has also been called “The Liar’s Disease.”
My fingertip was numb in 1996. I noticed it in the shower one day. Three days later, my arm began to hurt with no relief except when I leaned against the cold winter window in my classroom. I went to the chiropractor thinking I had a pinched nerve. He sent me to the orthopedic surgeon, who sent me to the neurologist. With one lesion in my spine, the doctor said I had a 10% chance of having MS. Two weeks later, the pain went to my legs, making it difficult to walk without a limp. The neurologist then said he always sent patients away with the 10% comment hoping they could enjoy a few more years of not living with MS. There was no recommended ongoing treatment for relapsing-remitting MS back then.
Five years later, I was back following nearly nine months of double and blurry vision. My official diagnosis of multiple sclerosis and the news that I would be taking shots for the rest of my life shocked me. Having needle phobia was a significant challenge in my early years of managing MS. Fortunately, science moved medicine in a new direction, and pill forms of treatment emerged, ending my shot ordeals.
Life with MS
The first years following the MS diagnosis were frightening. I feared the unknown future. New symptoms seemed to appear out of nowhere. Pain in the leg caused me to limp and teach from a seated position in the classroom. It kept me up at night. Balance, vertigo, weakness in my leg, and painful tingling followed me wherever I went. I never thought I would feel my fingertips or know how it felt to be normal again. Fatigued hit every afternoon at the same time, and I honestly feared falling asleep during class.
MS could not hold down this triple-A personality. I was new in my teaching career, so I picked myself up and returned to graduate school, earning my first master’s degree in 2002. In 2004, I left the classroom and moved into school administration. The workaholic in me went on to earn a second master’s degree in school administration in 2007 while working full-time with a family. By 2008, MS had had enough. A brainstem lesion messed with the automation of my heart which caused fainting. Then, the automation of my lungs was affected, making it difficult to breathe with periods of believing I was indeed going to die. The automation of my body temperature went next, causing symptoms of extreme cold and heat.
I recognized this attack meant the end of my dream of becoming a superintendent. After using a year of sick leave, I returned to the classroom, hoping to limp along with fewer hours and less stress. In the spring of 2011, fatigue and memory issues prevented me from effectively teaching. I knew it was time to wave the white flag and accept medical disability.
My first year on medical disability was a blur. Fatigue and pain stole most of that year. In the second year, fatigue continued to control my potential each day. During my third year on medical disability, memory, fatigue, and confusion had some predictability. Sleep, exercise, better diet, patience, and refocusing helped me to enjoy more good days.
Today, with the ability to take life at my own pace, MS has taken a back seat. Looking to the future, I see potential where none existed in 2009. The hectic classroom schedule is still beyond my reach, but other endeavors are within grasp. I have gone on to live a life that most would never guess included multiple sclerosis.