Health & Lifestyles
I Made It: ‘I wanted to feel like myself’
Leslie Cunningham, 27, St. Petersburg
GOAL: I wanted to raise awareness for multiple sclerosis (MS), a disease I was recently diagnosed with, and get past my own fears and misperceptions about the disease to help support others. I accomplished this goal through participating and raising money for a local MS walk, which took place March 16 in Largo.
WHY I DID IT: I wanted to show myself and others that despite my diagnosis in January 2012, when I was 26, MS wasn’t going to hold me back from living a happy, normal life and accomplishing my goals.
One goal I set this year was to get support from my friends and family to help me raise money as part of my local MS walk. I was motivated by the desire to help the people in my life have a clearer understanding of MS. I feel there is a stigma surrounding the disease and a lot of people are unclear about what it means to live with and fight MS.
This year’s walk also was important because I wanted it to be different from the walk I did a year ago, shortly after being diagnosed. I was barely able to complete that walk because of my MS symptoms and the intense side effects I was experiencing from my first treatment. Since the walk was so soon after my diagnosis, I was still very scared of the effects the disease would have on my life. I already was experiencing a lot of tingles in my spine, legs and face. I also started to have difficulty lifting my right foot, which was responding much slower than my left foot.
Now, after having a better understanding of the disease and being put on a new treatment plan, a lot of those circumstances have changed for me. I feel more confident that MS is just one part of me and not something that is going to control my life.
HOW I DID IT: To get myself from where I was during last year’s walk to now took a lot of inner strength, personal research and direct conversations with my doctor. I wanted to feel like myself and have my life. I was determined. I originally had been put on an injectable MS medication that ultimately did not work for me. Not only was it super inconvenient and painful, but the side effects were brutal. I was giving myself what felt like the flu with every injection.
I knew something had to change. I read newspaper articles, health columns, research and online forums. Google became my best friend. Of course, at times some of the information was over my head, but in the end, it really helped me have a productive conversation with my doctor. The injections stopped and I was put on a pill called Aubagio.
Feeling more in control and on the right track, I started pumping up myself and my friends for the 2013 walk and asking everyone I knew to join us. I had T-shirts made for my team that read “Leslie’s MS Alliance.”
HURDLES: I had to accept that I am living with a chronic disease and some things about my life would change. MS can be really scary, and it was hard for me not to jump to the worst-case scenario when thinking about my future.
I overcame this fear through research and talking to other people. I now know that the MS of today is very different from the MS that people still have in their minds.
Another hurdle was the way I looked. It was hard to have conversations with my friends and family because I didn’t “look sick.” MS is sometimes an invisible disease. Although I’m very grateful I don’t look sick, it makes it harder for people to understand that what I’m experiencing you actually can’t see. For example, the tingles in my spine are thought to be correlated to lesions I have in my cervical spine. The naked eye clearly cannot see that. Living with MS means that it’s possible that tomorrow when I wake up I may not be able to walk or see or feel my hands, even though today I’m perfectly fine.
GOING THE DISTANCE: I rounded up my friends, rallied support and became one of the top fundraisers for the 2013 MS walk. I personally raised $4,975, and the rest of my team raised $1,335, making our total this year $6,310. Sixty people came out on a rather cold Saturday to support me, and guess what? I made it! I made it with plenty of energy, and it was a proud moment! I walked among my friends and felt really excited to have so many people around me who genuinely cared about me and what I was going through.
BEST ADVICE: Speak up! Be your own advocate. If something is bothering you, talk to your doctor. Even if it is an embarrassing problem or it seems silly, most doctors have heard it all and they can help. My diagnosis started as a slight tingle in my spine when picking a pen up off the floor. It could have been nothing and it turned out to be something.
I Made It is a regular feature highlighting individual health success stories and does not reflect the opinions of 4you, which encourages you to work with a physician or trained professional. To share your story, visit TBO.com, search Lost It; or email firstname.lastname@example.org; or mail to 4you, The Tampa Tribune, 202 S. Parker St., Tampa FL 33606