I’m excited to introduce a new series to the blog, “Meet the Faces of MS”, where other people with MS share their experiences and success strategies for living Well and Strong.
If I’ve learned anything after being diagnosed it’s that no two people with MS are alike – we all have different symptoms, stories and ways to keep it under control, and I thought it would be helpful if we could all share our learnings for the larger community. If you would like to be featured, we’d love to hear from you. Please contact firstname.lastname@example.org. Thank you.
I’m thrilled to introduce, Shayla Rosen, who will be our first face of MS. Shayla was a pivotal resource to me when I was first diagnosed and is an active member of the MS community who initiated the event, Soiree for Success (now known as MS Summer Social), to raise awareness and funds for MS research.
Shayla, you’re an inspiration to us all and the epitome of living Well and Strong with MS! Thank you for sharing your story.
Name: Shayla Rosen
Tell us a little about yourself.
I was born and raised in Minneapolis, MN. I attended the University of Wisconsin Madison and settled in Chicago after graduating in 2001. I am a first grade teacher at a Chicago Public School so there is never a dull moment when it comes to my job. I am currently single and the proud aunt of my adorable niece and two nephews. In 2009, I started my own charity event to increase awareness and fundraise for Multiple Sclerosis called Soiree for Success (now known as MS Summer Social). I am so proud that the event has continued to grow and collectively has raised over $125,000. This past year Multiple Solutions, the junior board of the National Multiple Sclerosis Society Greater Chapter of Illinois made it one of their signature events.
How old were you when you were diagnosed?
I was 30 years old when I was diagnosed.
Tell us a little about your first symptoms and how you were diagnosed.
In October of 2008 I was sitting on my couch relaxing and making plans for the night when I started feeling dizzy. My leg was also tingly almost like it had fallen asleep. I thought it would go away once I started walking around. Instead, it continued and I couldn’t feel my leg when I was walking so I went to the emergency room. After waiting multiple hours, they did blood work, gave me an IV and sent me home. After two weeks, the numbness in my leg and the dizziness finally disappeared.
Months went by and in March of 2009, I started having blurred vision. At first I ignored it and went about my weekend. By the end of the weekend I started experiencing double vision. I couldn’t even cross the street without someone holding my hand. I went to University of Illinois Hospital to see an opthamologist. I did not think there was any possible connection between the numbness and double vision, so I failed to tell the doctor about it. As a result of my not disclosing the numbness they concluded I most likely needed a curvature in my glasses. They ordered an MRI and blood work just to be safe and told me to come back the following day.
I went by myself to my appointment because they seemed very sure it was not anything serious. The nurse called me into a room. She looked at me with concern and said, “The doctor will be in shortly to discuss your results. Good luck to you.” That was my first indication that something truly was wrong. The doctor came in and told me I had MS. She was not able to answer any of my questions and suggested I see a neurologist right away. I was in utter shock. I kept thinking I am young and healthy, how could this happen to me?
Within hours of my diagnosis, I was surrounded by the love of my family and friends. Their support made coping a little easier yet I still felt very alone. I was scared and sad all the time in those first few months. I woke up every morning worried the double vision would come back. Even with a strong support network, I felt nobody could truly understand what I was going through. Finally, I spoke to someone on the phone who was young and also had MS. This one conversation changed my entire outlook. She made it clear that MS was life changing, but not life ending. I felt revitalized after our conversation and ready to be committed to not letting MS get the best of me. I now look at having MS as my opportunity to make an impact. I have made it my personal mission to increase awareness, fundraise, and help others that might be struggling with an MS diagnosis.
If you had to attest you living Well and Strong to one thing, what would it be?
The support of the people in my life is what encourages me and inspires me to live my life to its fullest and be positive. They are the reason I continue to live Well and Strong.
What are some of the strategies you use to keep MS under control?
Exercise regularly, eat healthy, get plenty of sleep, and make time for yourself.
What advice would you give someone who’s recently been diagnosed?
Be an advocate for yourself. This past May my doctor cancelled an appointment he had asked me to schedule. I was told it wasn’t necessary to see a doctor now until August. This seemed wrong to me. His nurse who told me that an MRI and blood work could wait. I was not satisfied and made an appointment with a different MS specialist for June. I am so glad I took the initiative. The new doctor agreed I was overdue for an MRI and blood work and added tests that should have been run six months ago. You know yourself best so become educated on the treatments and speak up for yourself.
Meet people through your local MS community. They are a strong support network and I have met so many great people by getting involved.
You might need to make a few lifestyle changes, but having MS does not need to stop you from leading an active life. Continue to do the things you love!
Are you living Well and Strong with MS? We’d love for you to share your story and success strategies. Please contact email@example.com. Thank you.