Hearing diagnosis words…

It was the second Saturday in May of 2003, the day before my 19th birthday. I had just finished my final exam of my Freshman year in college after getting little to no sleep the night before because of the excruciating pain in my neck. My feet were tingly, I couldn’t see very well, and I was extremely dizzy, but it was move out day from the 6th floor of my dorm room. The elevators were broken, there were tornadoes going through the area so my parents weren’t able to make it up there, and I had a whole lot of stuff to cram into my Jeep Cherokee, Jerry!

After a couple falls, lots of help from gracious strangers, and one packed JerBear, I made the 1 hour journey home to spend my first summer working my first “real” job and being a big bad sophomore in college. Little did I know that I would hear four powerful words that would change my life, attitude, and outlook for the rest of my life.

It is still that second Saturday in May when my parents, and one of my 2 younger sisters suggested that we should all go to church and then celebrate the completion of my first year of college. There is a really special nature path at my childhood church, that my dad suggested we walk down before going inside. As we were walking, he stopped with tears coming down his face and then I look at my mom and sister and they are both crying. I had no idea until my dad was the one that shared some of the hardest words he has ever had to as a father, ” Sara, you have multiple sclerosis.” Well, now I am crying because I have no idea what this means for my future and all I want to know is 1. Am I going to die? and 2. Can I have children? It all was so new to my parents but thank goodness they know me because they knew the answers to both of those questions: “No you’re not going to die,” and “Yes you can have children, in fact pregnancy can be great for women with MS.” After talking further, my mom told me that they had known for a whole week before telling me because they didn’t want to ruin my finals week. The craziest part of my mom knowing was that we went to a concert together that week and that is one of the rare symptoms made its debut (blister in the back of the throat). She didn’t say a word. I can’t even imagine the feelings that were going through her as my mother. After hearing some answers, shedding lots of tears, and sharing a little bit of laughter, I was relieved. I at least had an answer and could figure out the next step I needed to take.

The next day (my 19th birthday), I started an intense IV of steroids that I was lucky to be able to do at home with my immediate family and extended family by my side. Much to my surprise, my amazing high school friends came together and planned a surprise birthday party to celebrate and to console and encourage me in whatever the next step will entail. I will forever be grateful for that party. It gave me hope that things are going to be okay.

Let’s just say, I do not remember 1 minute about the next 2 weeks of my life. I slept for 2 whole weeks because my body needed some TLC which required nothing but sleep and steroids.

Needless to say, my first summer as a college student was one that I will never forget and one that changed my life.

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Early signs of MS

As an 18 year old and a Freshman in college, I thought I had life by the hand. I was living on my “own,” no curfew, and I didn’t have to check in with anyone. My thoughts consisted of which party should I attend, how could I meet some new friends, should I join a sorority, which extracurricular activities should I join, and of course what time is class because I can’t miss it today!! 😉

But just like any freshman, there were ups and downs, and lots of emotions being felt. For me, it really hit home when I woke up one cold, snowy February morning and my entire body was numb and tingly from head to toe. Everything felt like it was falling asleep. I couldn’t even feel my head or hands as I was trying to put shampoo in my hair. After waiting a couple days to see if the numb feeling went away, I decided I should probably take action and figure out what was going on. After many baffled doctors (and even my parents!) thought it was just a little freshman anxiety, it was my freshman roommate who came back from class one day and said “Sara, I was talking with a friend in class and I think you have MS.” I looked at her and said that I had no idea what that means. So what do you do when you want to find out more about something quickly? You google it. Next thing you know, I am balling at my desk because I had every single symptom that was listed on several sites. I identified with everything from the common ones (dizziness, numbness, tingling, weakness, balance problems, extreme fatigue) to the more rare ones like feeling like I had a blister on the back of my throat every time I swallowed. I also found I had Lhermitte’s sign which is an electrical sensation that runs down the back and into the limbs every time I would bend my head. I knew it was time to take action in order for me to start feeling better.  I then got in touch with my parents and told them that I was confident I had MS and needed to get an MRI. I’m not sure they really believed me (or wanted to believe me), but they graciously got me in touch with our family doctor (who was also a close family friend) and then my first MRI was scheduled.

After 3 MRI’s and a Visual evoked response or potential (VER or VEP), which is when the eyes are stimulated by looking at a test pattern, the doctors were able to see lesions in my spine that confirmed I indeed did have MS.

MS Run the Us Journey

In November 2013, I was able to attend the National MS Leadership Conference in Denver because of some of the amazing women from our local chapter, Great Carolinas Chapter for the National Multiple Sclerosis Society. As a result of this incredible opportunity, I was able to make connections and friendships with people from around the country who are doing amazing things to help find a cure for MS. It was during this incredibly inspiring, tearful, and hopeful event that I met Ashley Kumlien and Aaron Schneider. Ashley and Aaron shared inspirational stories about their wonderful nonprofit called MS Run the US. To be honest, all I remember is seeing at first was that running was involved so I knew that I wanted to be a part of it. What really sealed the deal for me though was when Ashley shared her story to the entire group about her cross-country run and how it helped her to spread awareness and raise $500,000 for her mother who is also living with MS.

I knew I had to be a part of this inspiring and impactful event because not only do I love running, but I’m also currently facing the daily challenges of living with MS and I do everything in my power so that everyone else who is living with MS can someday say “I had MS” instead.

On December 1, 2013 I received my acceptance invitation and knew I was about to embark on an incredible, life-changing journey.

I will be joining 15 other people to run a 3,000 mile relay run across America. Starting on April 13th in Los Angeles, CA and ending on August 17 in New York, NY, each runner will run an average 170 miles over 6 consecutive days during their assigned segment– collectively running 3,000 miles in 4 months.

Not only will we each runner be training to run 170 miles, we will also be raising more than $10,000 each for MS research, disability awareness, and MS Run the US organization.

In order to accomplish this, I will need your support either financially or by word of mouth. Any amount– big or small– can make a tremendous impact to this cause to find a cure for MS. Spreading awareness about MS Run the US and sharing my link with others can have just as much of an impact on finding a cure.