We all have something….and illness, and injury, a social disorder. We all have a story to tell. This part of my story is about my illness. I have Multiple Sclerosis, but it does NOT have me!
What Is MS?
MS is a long-lasting disease that causes damage to the nerve endings in your brain, spinal cord and/or optic nerve. Web MD has this to say about MS, “MS happens when your immune system attacks a fatty material called myelin, which wraps around your nerve fibers to protect them. Without this outer shell, your nerves become damaged. Scar tissue may form.” It affects everyone differently. It can cause numbness and tingling in the extremities, vision impairment, nausea and dizziness, paralysis, weakness, extreme fatigue, memory loss….among other various issues.
One Saturday in June of 2009, I was getting ready to head to work in my retail management career. Out of the blue I felt a tightness in my chest, could not catch my breath, and was crying uncontrollably without even realizing it. My sister was in from out of town and came to my rescue. She drove me to a nearby hospital. On the ride, I lost feeling in my left arm. Of course we thought I was having a heart attack. The ER exam and testing ruled out a heart attack and they kept me for observation.
That evening as I awaited my dinner tray, I lost feeling and function in the left side of my face. When I rolled over to look at my sister, she was as white as a ghost. They put me in an ambulance and rushed me to a different hospital where they had Neurological specialists. In the ambulance I lost the feeling in my left leg. Now we were all thinking stroke. MRI’s and other testing ruled out a stroke, Lupus, Lyme’s Disease and other possibilities. The Neurologist on call refused to give up. She ordered a spinal tap for Monday morning. She had a strong feeling about my prognosis….you see, my mother has MS as well. She was diagnosed at the age of 19, in 1963.
During my spinal tap I had two seizures and my heart rate dropped below 30. All I remember is thrashing around and waking up drenched in sweat. The rapid testing revealed that my “O Bands” were 99% positive for MS. I began 5 days worth of IV steroids and the doctor ordered for me to start daily injections of Copaxone which is one of many DMD’s (disease modifying drugs). The next few weeks were a blur….Occupational and Physical Therapy, nurses coming and going from my house, and learning a “new normal”. How do you put your hair in a pony tail? How do you walk with a normal gait? How do you pick up a penny?
Eventually I regained most of it with the help of many people. I returned to the gym very slowly and hired a personal trainer who helped to change my life. I was in the early stages of a divorce, and also lost the career I had worked so hard at developing. But for the first time I was slowing down. I was enjoying my daughters. They were 3 and 9 at the time.
Here I am 9 years later. I have gone through so many life changes that I will tell you all about in the future. I am happy to say that I have only progressed to RRMS (Remitting-Relapsing Multiple Sclerosis). My symptoms are extreme fatigue, numbness and tingling in my left hand, arm and side of my face. Some cognitive function hurdles are present along with the occasional bout of vertigo.
My daughters are now 12 and 18. They are my drive. I am so blessed to have them. I workout regularly to maintain strength. I have built a life that has contributed to my happiness and inner peace. I may have to do things slower or in a different way, but I still live my life. I tell anyone and everyone who asks me about my disease. I will educate people and have helped quite a few newly diagnosed patients deal with their “new normal”.