Welcome to my world! As a diagnosed MS patient since 1996, I have had quite a few experiences and lessons in living with this unpredictable disease. I know the ups and downs, have experienced some of the most frightening symptoms of MS, have managed on-going MS symptoms, been faithful for years with MS treatments and given myself repeated hiatuses after ten solid years of shots. At one point, I found myself in the midsts of the dark side and returned with the determination to choose happiness for each day is a gift. I hope my story will help others to find happiness and hope, to define themselves for who they are rather than by a disease that walks the steps of life with them. This is my story.
At 15 years old I began to have MS symptoms. Cognitive issues with the inability to understand language at times was my first symptom. Like most MS symptoms it came and went making it difficult to explain to others since I was confused by it myself. 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 and so I told people I could not hear well. When my hearing was checked my mother knew I could hear so from her point of view I was lying, which in reality, I was. In my mid-30s the speech dysfunction returned and I knew immediately what had been going on when I was a teenager. My doctor told me many years ago that MS was dubbed the Liar’s Disease. I can relate.
My fingertip was numb. I noticed it in the shower one day. Three days later my arm began to hurt with no relief except leaning 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 I was told I had a 10% chance of having MS and to come back if things got worse. Two weeks later the pain went to my legs making it difficult to walk without a limp at times. I returned to the neurologist who said he always sent people away with the 10% comment hoping they could enjoy a few more years of not living with MS. There was no recommended on-going treatment for relapsing-remitting MS so he said to return when I could not take the symptoms any longer.
Five years later I was back following nearly nine months of double and blurry vision. I was officially diagnosed with MS and my world was rocked by the revelation that I was going to be taking shots for the rest of my life. Having needle phobia, this was a significant challenge in my early years of managing MS. Fortunately, science moved medicine in a new direction and pills came out 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 nights. 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 truly feared falling asleep during class.
The triple A personality in me could not be held down. I was new in my teaching career so I picked myself up and returned to graduate school earning my first masters degree in 2002. In 2004 I left the classroom and moved into school administration in lieu of medical disability. The workaholic in me went on to earn a second masters degree in school administration in 2007 while working full-time with a family. By 2008, MS had had enough. The automation of my heart began to cause fainting in the late winter and moved to my lung by summer making it difficult to breathe with periods of believing I was truly going to die. In the fall the automation of my body temperature caused me to feel non-relievable (without medication) symptoms of extreme cold and heat.
I knew at this point that my career was over. My dream of being a superintendent skilled at financial and curriculum recovery for failing school districts would never be realized. I took a year off with sick leave and then returned to the classroom hoping to limp along with fewer hours and stress. In the spring of 2011 fatigue prevented me from accommodating my memory issues by writing notes on the board to guide my instruction. Unable to remember the some of the content of my degree, the direction of my instruction, who was in my class, answer questions because I could not remember what was being asked, and fatigue preventing me from writing on the board or standing for any length of time, 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 escaped with most of that year. In the second year fatigue continued to control the amount of potential I had each day though I did try to quilt. During my third year on medical disability, memory, fatigue and confusion spring into my day with some predictability. I learned how to manage the symptoms to some degree. Sleep, exercise, better diet, patience, and refocusing helped me to enjoy more profitable days.
Today blogging, quilting, and my family fill my life. Keeping stress to the bare minimum I am able to stay healthy and manage MS as it arises. Though not symptom-free, strategizing my energy allows me to accomplish a few more things such as becoming a board member for the local domestic violence/rape crisis center, earning my first responder certificate, and drafting my first children’s book. My message is life goes on even when medical disability replaces a career.
Today, I am feeling much better. 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 with the success of Tecfidera in managing multiple sclerosis.