My MS Story

Hello, my name is Karen.

My journey toward an MS diagnosis began in early 2017, when I was 48 years old. I was formally diagnosed with Relapsing-Remitting Multiple Sclerosis in January 2018.

This is how my journey began.

I was invited by a friend, who worked for a corporate sponsor of Walk MS, to walk with my family on April 8, 2017, at Liberty Station in San Diego. We were walking to get exercise, to enjoy fresh air, and to take in a change of scenery. While at Liberty Station, I was compassionately curious about why all those people and families were there together. What was MS anyway? So I listened. As I heard the warning signs/symptoms of MS, I said to myself that what I was hearing sounded eerily familiar to what I had been experiencing; balance issues (I couldn’t walk on the treadmill without holding on to the arms), tingling and numbness in my extremities, vision problems (blurriness at normal distances, dry eye), and this weird electrical shock sensation that radiated from my neck down both arms to my fingertips when I lowered my chin to my chest (I later learned that it had a name – Lhermitte’s Sign).

For a month, I told myself I was a hypochondriac.

But it kept nagging at me. I called my sister and explained that I made an appointment with a neurologist on May 16, 2017. I told her that I knew it sounded stupid, but I thought I had MS. I asked if she would go to the appointment with me.

The neurologist told me I had carpal tunnel. I rolled my eyes and thought to myself that he didn’t listen to a word I said.

Lesson Learned: We know our bodies better than anyone. Don’t settle for an answer that doesn’t make sense to you or doesn’t resonate with you.

When I conveyed my distress and frustration to my primary care physician, she urged me to see another neurologist. I made an appointment for October 2, 2017. At my urging, this neurologist was thorough. He ordered MRI scans of my brain, cervical spine and thoracic spine, followed by a lumbar puncture (spinal tap). He ran a boatload of tests to rule out other conditions. The presence of 15 oligoclonal bands (normal is 2!) in my cerebrospinal fluid confirmed my diagnosis. He called me January 2018 to share that I had Relapsing-Remitting Multiple Sclerosis.

Wow, that was hard to hear. For a few weeks, I didn’t tell anyone. Not my husband, not my son, not my parents, and not my sister. As I digested the news, I went through the full cycle of grief – denial, anger, fear, depression, and finally acceptance. I was ready to put on my big girl panties and deal with it. It is an attitude I adopt each time I face a setback. I let myself feel my feelings, and then I move forward with a plan, with determination, with resolve, and with hope.

Lesson Learned: Feel your emotions, but don’t wallow in them.

I was acutely aware that my 13-year-old son would be watching how I handled the news and what my subsequent actions would be. When I shared the diagnosis, I admitted my fear and sadness. However, I promised him that I would not only seek the best care and be a model patient, but that I would adopt a warrior (and not a victim!) mindset. I know that life will throw lemons his way (be it his or a loved one’s health, career, etc.) and I always want to be a role model and example for him.

Lesson Learned: When life throws you a curve ball, don’t let it knock you down and keep you down. Get up, re-adjust, brush yourself off, and keep moving forward.

Within just weeks of diagnosis and wanting to get involved. I signed up for Bike MS: Bay to Bay. Never mind that I didn’t even own a bike. Never mind that I hadn’t ridden a bike in decades. I was determined to show the universe that MS would not beat me and that I would never give up. And was I blessed with guardian angels along the way. A friend who committed to riding by my side at Bike MS so I wouldn’t have to ride alone, a personal trainer that helped me with compound exercises to mitigate my balance challenges, the husband of a co-worker who gave me a bike, a woman I met in spin class who taught me how to ride, and many ride guides and cyclists who helped me prepare in just a few short months to mentally and physically ride 100 miles

I have done what I can to not feel hopeless or powerless. For me, that has been sharing my story in the hopes that it helps or inspires others. It has also been raising money for the MS Society through participation in Bike MS. I have been a Top Fundraiser in each of the years I have participated, was awarded Most Inspirational Rider in 2019, and this year I’m overjoyed that my team, Howard’s Team, will be writing a check for over $660,000(!) to the MS Society.

Lesson Learned: Get plugged in! Speak, participate, volunteer, raise money! You’ll feel better for it.

Although I was blessed to be stable for several years, this year has been different. MS is chronic and progressive, everything can change from one minute to the next. I have seen increased demyelination of my central nervous system, resulting in right side weakness and fine motor skills issues, increased balance challenges, and issues with my speech. I was forced off my single (two-wheeled) bike and was unable to ride. I was having trouble even walking. I found myself trying to be as small and as still as possible in response to these changes.

Lesson Learned: Don’t let MS make you shrink, mentally or physically.

Living with MS is teaching me important lessons…like how to be adaptable.

I woke up on the morning of June 12, 2022 to a congratulatory email from the Meat Fight Inc. Meat Bike program that they APPROVED my application for a recumbent trike. I was #328. They have helped so many MS warriors stay active. Having to move from my 2-wheeled bike to a 3-wheeled recumbent bike could be seen as a bitter pill to swallow. Instead, I am choosing to embrace “what CAN I do” and “free on three wheels!”

Around the same time, I was invited by a friend to ride the last leg of his 1,800+ mile Bike the US for MS ride on the back of his tandem. I was beyond touched and honored and replied with an immediate YES (even though I was simultaneously wondering how the heck I was going to pull it off, or even if I could).

Fundraising for and riding in Bike MS has been such an important way for me to show the universe that MS will not beat me and that I will never give up the fight. The new physical challenges I had to face earlier this year had me doubting that I could ever ride in Bike MS again, let alone cross the finish line. I just didn’t believe it would be possible. It was devastating. Crushing. I was in a place of darkness, despair and fear.

My friend’s invitation changed everything for me. It gave me a goal to set my sights on, a challenge to focus on, and it got me moving again. Most importantly, the work that we did gave me HOPE – hope that I could actually tackle Bike MS: Bay to Bay on October 15-16, 2022.

Lesson Learned: The question to ourselves needs to become “What CAN I do?”

There is always a way for us to be physically active. It might change over time and it might look different, but there is always a way.

MS is the row that has been given to me, my cross to bear, or however you want to say it. But I have been blessed with many helpers along the way to encourage me, lift me up, and help shoulder the burden. There are so many good people out there – we are never really alone in this fight. I have learned to be on the lookout for them and recognize them, ask for what I need, and accept help.

Lesson Learned: Ask yourself who can you invite into your village to provide the loving, compassionate, caring that we need so much to remind ourselves to live life to the fullest, to embrace challenges, and not to stop fighting MS?

A good friend, and fellow MS Warrior, recently said something profound to me that I will never forget – “Sometimes we are the wind, and sometimes we are the sail.”

In my journey with MS, I have been both. I am both.