Tara — MS LifeLines^® Ambassador

Since my diagnosis with relapsing multiple sclerosis, I've learned many things that have allowed me to enjoy life more. Today, I have time to take advantage of opportunities I might have missed before because I couldn't say "no" to anyone and I couldn't say "yes" to myself.

Growing up, my life revolved around figure skating. It was normal for me to spend 35 hours a week on the ice. I pushed myself hard, and eventually stress fractures in my shins ended my competitive career. I went to college to try to prepare myself for a life in the corporate world, but later I turned my passion for competitive skating into a passion for coaching. I threw myself into the job—working 80 hours a week and doing everything anyone asked of me.

In June 1999, I decided I needed the kind of push I gave my skaters and I hired a personal trainer. Not long after we'd started weight training, I noticed what felt like electric shocks or currents in my left arm. I was also experiencing severe migraine headaches focused above my right eye. I saw a doctor, who sent me for an MRI. I went to a neurologist, who reviewed my MRI and said I was fine. Who was I to argue? Besides—I was feeling better.

That fall, I was back to my usual routines—go, go, go—but it felt harder than it had before. I was always tired and irritable. I would doze off at work or even mid-conversation with my fiancé. I couldn't get enough caffeine. My fiancé thought I was working too much and not taking care of myself. Eventually, the fatigue subsided, just in time for a new round of big stressors—our wedding was only a few weeks away, we were buying a house and a truck, my fiancé was interviewing for a new job, and the holidays were coming just as the skating season was getting busy. I couldn't wait to just finish all that, drive to Colorado, get married and have a great vacation.

The drive out to Colorado was perfect, and I couldn't wait to hit the slopes—I love being on top of a mountain, ready to point my skis toward the bottom and just let go. Once we arrived, though, I noticed some strange things happening with my body—numbness and burning feelings. I didn't lose any coordination, though, and I still had one of the best weeks ever—beautiful scenery, great friends and family, and the perfect mountainside wedding.

I saw a new neurologist when I got home. She scheduled a lot of tests, but she wouldn't answer any of my questions until all of my tests results were back. I was so frustrated with this doctor, I decided to find someone new. I cancelled the remaining tests with my former neurologist and got copies of all my records. I walked into the new neurologist's office with all my scans and copies and the journal I'd been keeping with all my symptoms. I was hoping for quick diagnosis, and I got it. After a neurological exam, a review of my records, and a Q&A session, the new doctor looked at me without expression or compassion and said, "You have [relapsing] multiple sclerosis." He loaded me up with brochures and videos and sent me home.

Those initial weeks, of course, were filled with disbelief and fear. I imagined myself disabled with everything I love to do and my career taken away. I looked for information on the internet and was overwhelmed, but I decided that I deserved better treatment than I'd been getting. I was lucky enough to find a third neurologist, an MS specialist, who was perfect for me. At my first appointment, he spent three hours answering questions, reviewing my records, and reassuring me that there are therapies that really work and thousands of people who live normal lives with MS. It was an amazing relief.

My treatment began as part of the "EVIDENCE Study" for Rebif^® (interferon beta-1a). It compared Rebif to Avonex^® (interferon beta-1a) in a head-to-head trial. Both are approved for relapsing MS. I took pre-filled subcutaneous shots (which means the needle goes just under the skin) three times per week, getting 132 mcg a week of Rebif. With all therapies there can be side effects, and Rebif has some, too. I sometimes experience spots around the injection sites and a couple of flu-like symptoms. However, when I take an analgesic with my shot, it decreases my flu-like side effects. Remember, this is my personal experience, and yours may be different—that's why it's important to talk with your doctor about what's best for you.

As important as finding the right doctor and treatment had been, the big turning point for me came several months later. I was feeling better, but I still wasn't myself. I was talking with my husband one evening about my skating students and how I wanted them to try their hardest and never give up. My husband said, "Why don't you practice what you preach?" He said I'd lost my strong-willed, determined, positive outlook on life. He was right—boy, do I hate it when that happens! It was time to end my pity party and tackle MS head-on.

I started getting involved and more educated about MS. A friend and I decided to start our own support group—an amazing experience. And, I re-examined my priorities. I made a commitment to do everything in my power to stay healthy—stay on Rebif, keep my attitude positive, rest when I need to, learn to say "no" sometimes. With those changes, I won control over my life.

Today, I listen to my body more—I appreciate what I'm able to do, and I make the best of each day. My husband and I have moved to Colorado—a dream that has become a reality, and the new experiences keep coming. I encourage everyone to reach for those places that will set you free and to remember—we might be people living with MS, but I prefer to think of us as "mighty strong" people. We have the strength to make our lives with MS even better than they were before.

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. Tara is an MS LifeLines Ambassador, and she has chosen to share her story with other people living with MS.

Avonex is a registered trademark of Biogen Idec.

Next story: Tim >
< Back to index