Sandi — MS LifeLines^® Ambassador

What did you dream about when you were a little child? I didn't dream of having relapsing multiple sclerosis—I dreamed of being a mermaid, swimming through the sea, my long, flowing hair trailing behind me. Ever since I was three years old, I knew I belonged in the water. I've always been reserved and shy, and the pool gave me a place to hide. Even today, when I need a break there's nothing more peaceful than putting on my scuba gear and sitting at the bottom of the pool for a while.

I married young, at the age of twenty, to my first and only boyfriend. He's still my soul mate and my best friend, after more than thirty years of marriage. For twenty of those years, we owned and operated a wholesale and retail greenhouse. We worked long hard hours in extremes of heat and cold. I used to have strange leg and neck pain and sometimes my vision would blur, but I never thought it was more than overwork or old injuries acting up. While we were working so hard, we also managed to have four wonderful children. They're all grown and on their own now, but when they were little I was Class Mom, Baseball Mom, Soccer Mom, Den Leader, Girl Scout Leader, and PTA Secretary. I also taught swimming at the local YMCA and coached for the Special Olympics. I was not only busy, I wanted everything I was involved in to be the best—can you say "type A"?

Eventually, my husband got a new job and we moved to a different part of the country. I got a new job, too, but I was still having vision and balance problems. Then, while visiting my sister, I had a bad fall and tore both of my rotator cuffs. Then, while recuperating and awaiting surgery, I had another accident and hurt my knee. I'm sure this doesn't happen to mermaids—something tells me I'd be much more graceful in the water! I eventually had several surgeries to repair my injuries, but strange things kept happening. My husband would call during the day and ask if I'd been drinking—apparently my speech was slurring. I was also getting forgetful about things I'd always remembered before, like picking my son up from soccer practice—that was embarrassing! While all this was happening, I'd been in physical therapy for my shoulders and knee. I enjoyed the massage part of the treatment so much, I decided to become a massage therapist myself. I loved my new job, but my strange symptoms were getting worse. I had so many odd pains, I didn't know which leg to limp on. Finally, after many doctors and tests, I was diagnosed with relapsing multiple sclerosis.

At first, I was frightened. We'd already had a lot of loss in our lives—my husband had lost both his parents and I'd lost my dad, who had been very close with my oldest son. I didn't want my husband or my kids to lose me or have to take care of me, but I didn't really know what might happen or who I might become. However, I realized that I needed to put my diagnosis in perspective. With my doctor's help, I began to educate myself about relapsing MS. I knew knowledge was going to be my ticket for understanding what was happening to me and taking control of my life.

The doctor went over the various treatment options. I asked him what he'd recommend if I were his wife. He thought Rebif^® (interferon beta-1a) was the best choice for me to manage my relapsing MS. For peace of mind, I got a second opinion from an MS specialist, who agreed that Rebif was the best choice for me.

I've been pleased with my experience on Rebif. In the past two years, I've only had three exacerbations, and, when I experience side effects, they're manageable. I've learned, with my doctor's help, to control the flu-like symptoms by taking an analgesic two hours before I inject and then again around 3 a.m. if I get a slight fever. I inject before bed, so I can usually sleep right through any side effects I may have. These are my experiences; some people experience other side effects, such as injection site reactions, depression, abdominal pain, increased liver enzymes, and blood count abnormalities. That's why it's important to talk to your doctor to determine if Rebif is right for you.

Sometimes we saw people living with MS at my work. I started making an effort to be around when they were there—I thought knowing somebody else who was dealing with something similar might give them hope. I worked on finding the hope in my life, too—it started with lifestyle changes. I became interested in diet and nutrition, meditation, making new friends and kayaking. I also focused on finding ways to exercise and have fun outdoors that didn't require too much walking. And, I learned to take advice from the people who are close to me. They see me every day, so when they say it looks like I need to slow down, I listen to them. I've also gotten pretty good about seeking expert advice—I've attended conferences and talked with all kinds of health professionals. I've been especially interested in learning about Aquatic Therapies—of course!

Don't get me wrong, I still have bad days—don't we all? But I'm really grateful for the lessons relapsing MS has helped me learn about taking care of myself and letting go of some of my old "type A" ways. I'm still swimming whenever I can, and I'm holding on to my hopes and dreams, even if sometimes I have to modify them a bit. I still haven't managed to become a mermaid, but it turns out that I had more inner strength than I'd known about—and that might be even better. I hope everyone living with relapsing MS will find that strength within themselves and learn to dream new dreams.

This story reflects the personal experience of one person, and others can be different. Results and experiences vary from patient to patient. It is best to contact your doctor to discuss what's best for you. Sandi is an MS LifeLines Ambassador, and she has chosen to share her story with other people living with MS.

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