Our 4th MS Walk 2014

Saturday approximately 1,000 people and I will be at the MS Walk at Audubon park. This will be my fourth walk. It's amazing how much has changed in the four years since the first year we attended the walk. 

At the end of 2010 my sister asked if I wanted to create a team for the MS Walk, which was March 26, 2011. My immediate answer was no, I didn't know how I'd feel about being around so many others with MS. I was still trying to figure out how to deal with the disease myself and I didn't know how I would feel emotionally seeing people at all different stages of the disease. When I was originally diagnosed I only knew one person who had MS, that person was diagnosed before there were any medicines to treat the disease. After really thinking about it I gave in, and decided that if I couldn't handle it we would leave. Plus, my family was going to be there and they've always been very supportive, helping me through the dark days.

I really didn't have many expectations that year, except that if we were going to do the walk, we'd do it in style of course! At that time Bridget was all into tutus, which we had worn for the red dress run in August of 2010. After thinking about it we decided we'd wear pink and lime green tutus (my favorite colors) and that's when Tutu Cute Fighting MS was born! When I was diagnosed with MS I said I always had to look cute, to hid the fact that I wasn't feeling good at all. Also, I joked that if I ever did need a wheelchair I'd start wearing my heels again because no matter what I'd always stay stylish. 

That year we didn't fundraise much, I sent e-mails to my close friends and family and figured we'd go out there and just have a good day. Well, that year we ended up raising $1500, I was in shock because I never expected to really raise that much money. Of course after that my competitive side wanted to raise more money the next year. 

Over the past four years our MS walk team has raised nearly $20,000!!! This year we are holding strong as the #2 team with $6, 480 and not to brag, but I'm currently the New Orleans #1 individual fundraiser!!! If someone would have told me 4 years ago that I'd do whatever I can to raise money for MS and spread awareness I wouldn't have believed it. 

There are times where I feel as though I haven't been successful since I haven't had a full time job because of the chronic pain I struggle with and how sick I was once I graduated from college. But, if nothing else I've raised a lot of money for the MS Society (with the help of my amazing support system of family and friends) and I've also raised awareness. When I was first diagnosed I went through a period where I was very emotional over the diagnosis, wondering why I had to deal with this after struggling with other chronic illness growing up, it wasn't fair. But, now I realize maybe God knew I'd do everything in my power to raise money and awareness for MS. Even though our team hasn't raised as much as some teams, we do a lot of fundraising throughout the year and every dollar counts. 

Since July 2010 when I was diagnosed, the FDA has approved 3 new ORAL medicines to treat MS (which is huge since all the others were injections or infusions). Each year the society funds new research to stop disease progression, restore what has been lost, and end MS forever. 

Second Chances...

It's not a big secret that I SUCKED at keeping up with this blog, but today I'm going to start new and try to really keep up with this! There were no real reasons for the lack of blogging, but now I'm becoming more open and involved with the National MS Society and I have more to share.

Recently, I registered online to become an MS advocate. I've gotten e-mails from the National MS Society for years about becoming an advocate. The first time I was really excited about signing up until I realized I had to watch a video, which was fine the issue was I was on my way home from the beach that day. To be honest, I didn't contact anyone or really do anything to see if I could work it out, I just let it go. Over the years since I've been diagnosed, I have slowly become more open about my disease and able to talk about it without fighting tears or tears just streaming down my face without being able to control it.

I felt that this time when I got the e-mail about becoming an MS advocate it was just time. I filled the questionnaire out and submitted it, not putting too much thought into it. Well, let's just say if I had known what I was actually getting myself into I may not have pressed send. Unbeknownst to me, in order to become an advocate there was a process that involved discussing me and my involvement among the top members of the Government Relations Committee and an interview.

I'm not much for public speaking, I have done it, but it's not my favorite thing to do. (Just FYI I don't consider teaching to be public speaking, that's totally different. Although I would sometimes try my jokes on them, almost all teachers are hidden comedians). I've really only spoken about my MS story once before in front of a group of people. It was in August 2013 at a mix and mingle event hosted by the MS society in order to bring the members of all the events together. Everyone said it went well, but I felt I sounded nervous and it seemed really quick.

Even though I do get nervous about public speaking, I've agreed to tell my story again, but this time it'll probably be a bigger audience. Over the summer, after getting my car I started looking into the different speciality license plates. Of course my first thought was an LSU one, but I started looking at the different plates and saw how many organizations had speciality plates. Louisiana didn't have a National MS Society license plate, so I went to google to look and see if other states had them. Once I found that a few other states had MS license plates, I asked the two people who handle the government relations in regards to MS.

I wasn't the only person who wanted or had wondered about an MS license plate. Once I realized that speciality license plates had to be passed as a bill I called my local senator. His secretary was very helpful and he gladly said he'd write the bill for us! Then, I sent all the information to the head of the government relations committee. That was in August, now that Congress is in session we're in the process of getting it passed. Here's where the public speaking comes into play, since I started this they want me to give "testimony" and tell them why I wanted this license plate. I'm pretty sure it doesn't matter too much what I say because seriously why hate on something like that? But, it spreads awareness to more people which is one of my main goals.

Since being diagnosed with MS it's been a big part of my life. My sister and I have been a part of the MS Walk committee for three years, participated in the walk for four years, and volunteered at the Vintage Affair (formally the Renaissance Fest) for two years. Once the MS license plates are in production, it'll be another source of fundraising and it'll raise awareness at the same time. Raising awareness for MS has become my goal and raising money helps the society with it's continued research.