Tomorrow I run my final miles of my MS Run the US segment, 22 or so miles from Jean to Las Vegas. My mother was diagnosed with MS 10 years ago, and she is the reason I joined the Relay. She has been with me every step of the way. But tomorrow’s segment is specifically in honor my mom. I will wear her name on my back all day as I run and walk.
A while ago I asked if she would write a blog post and she agreed. I’ve waited until today to post it. It seemed like the right time, on the day I run for her. I love you mom. I draw strength from you and watching how hard you fight and I am honored to have been able to do this for you. We’ll always be a team.
I’m Jay’s mom, Annie.
Herniated discs run in my family. Multiple sclerosis does not.
After I had an MRI to confirm a diagnosis of a herniated cervical disc, several lesions were also “incidentally” found in my spinal fluid. An MRI of my brain revealed a large number of lesions. Other tests followed that confirmed the diagnosis. The lesions seemed like foreign invaders to me. They still seem like that—uninvited and unwelcome.
I don’t remember having many symptoms of MS at the time. But I was struggling with multiple cervical and lumbar disc herniations that were impinging on my spine. In retrospect, I probably attributed the MS symptoms of pain, numbness, tingling and falling to the disc issues.
When I was diagnosed with MS, I only knew one person who had that disease and she was losing her ability to walk, to talk, to think clearly. In my world, she was losing everything. I soon learned that I was very fortunate. I had the relapsing/remitting form of MS—a much milder form of the disease.
The doctor started me on an injectable drug therapy and some oral medications to combat stiffness in my limbs. My adventure with the world of MS began.
The first MS drug was extremely difficult to tolerate. It made me very nauseated and tired. My white blood count plummeted. I was constantly sick and couldn’t work. At one point, I was sent to a hematologist because they suspected I had leukemia. I had horrible nose bleeds. After I suggested changing the drug several times, the doctor finally agreed. My white blood count returned to normal and the nose bleeds stopped.
I started a new drug. There were virtually no side effects. But I had a terrible relapse. When I was driving down the expressway, the vision in my right eye began to fade. My legs were very weak. I was terrified. I was hospitalized and put on IV steroids. Eventually, my vision returned in my right eye and I regained the strength in my legs. But I gained a lot of weight and was plagued by fatigue. I felt defeated.
I finally realized I had to change my life. I could have a good life with MS but it wouldn’t be the same life I had before MS.
My career had to change. A hard-driving, 70-hour a week sales management job was over. I entered the non-profit arena and pursued communications/public relations. I had to lower my level of stress.
I found an integrative medicine physician who diagnosed a number of food allergies including gluten, garlic and dairy. I knew I had food allergies years before but ignored the doctor’s advice. Now I listened and changed my entire diet.
I took charge of my health care. I need a team of doctors who are willing to collaborate with me—listen to my ideas, thoughts and suggestions. My internist and ophthalmologist are outstanding. I have had four neurologists and am holding auditions for the fifth. Collaboration is a challenge for this group.
Relapse prevention is key. In my ten years with MS, I have had 4 relapses. I had three of those relapses at one job due to extreme stress. Everyone in that particular function was under that stress but I was the only one with MS. I resigned without another job and was unemployed for almost a year. To this day, that employer doesn’t know the reason why I left.
By far, my greatest challenge with MS is employment. I never tell an employer or anyone I work with that I have MS. It doesn’t help and, the one time I did tell an employer, it really made the situation worse. Professionally, I live in the closet which is not where I prefer to live.
Attitude is everything. This disease doesn’t affect my day-to-day life. I can go months without thinking about it. I have not had a relapse for three years and I don’t intend to ever have one again. I know my relapse triggers—extreme stress and heat especially high humidity. I have a healthy respect for this disease but it will never defeat me.
I was once a very ambitious corporate senior manager with a very promising career. MS has made me a kinder, gentler person who loves her writing career and is not so driven.
My greatest strength is my family. They have walked with me through my darkest hours and have helped me get to the other side. What can you say about a son who would run 7 marathons in 7 days? I am humbled and I am proud beyond words.
I also want to thank the many people who have donated and supported us.