3 Down 1 to Go

April has been a busy month with doctors appointments, trips to the capitol, and of course Easter. April 15-16 Bridget and I attended Louisiana Public Policy Conference as part of the government relations committee with the National MS Society. It was definitely a positive experience and being someone living with MS made a bigger impact on the legislators than some of the other members giving facts/figures.

The first day it was a small group of us, so they tried to break us into groups having at least one person who had been before with new members. They also tried to have one person living with MS with each group. I planned to sit back and observe the first day so I'd be prepared for the second day. For as long as I can remember I've been very observant, it's something that comes natural to me and in some situations you can learn a lot by taking a step back and watching everything that's going on. 

We were standing outside the senate meeting (I think it was the senate) there was a group of four of us and we had folders that had information on MS, along with the different bills the National MS Society was supporting. The lady in our group had given the senator the folder and was telling him about MS and the bills. While she was talking, I don't remember what she said but I remember telling him that I had been diagnosed with MS 3.5 years ago. 

Then, without really thinking about I added that my first symptom was 3 years before I was diagnosed and early diagnosis is important because between my first episode and being diagnosed I developed several lesions. A big issue with MS treatment is that it's only proactive not retroactive, therefore all the lesions I have that cause symptoms I have to deal with until there's a new treatment. 

I just said what I said before I really said it, but it was amazing. At first he had been looking at all four of us, but at that moment he was keeping eye contact with me. Apparently the others noticed it too, the lady mentioned that she thinks he may not remember much from what he heard but he'll probably remember me and those words. 

I think that since people think I'm younger than I am when I tell my story they can imagine their daughter, sister, or someone going through what I'm going through. I don't want people to pity me, but I do want people -- especially legislators to listen and think about what different pieces of legislation affects people like me. By people like me, I mean people with any chronic illness that not only affects my daily life but also my family. I think we, everyone who came to represent the National MS Society, were very successful in getting legislators to listen to us, that's all we can do.

More exciting news the MS license plate bill has passed unanimously in the senate small committee, the senate floor, and most recently the representative small committee. I actually was able to attend the house of representative small committee meeting and tell them how much getting this license plate would mean to me and why I called Senator Gary Smith to sponsor it. It's amazing how supportive they all were, one said he had worked for some MS fundraisers. Another representative agreed with how amazing it would be because of the awareness it would raise.

Initially I was thinking about how much MS has affected my life and figured why not call and ask, worse case scenario is I'd be told no. But, it's a bill that is easily passed and it would raise awareness for MS plus the money raised would go to the National MS Society! It's a win/win in my book and apparently others agree. Now, we're just waiting for it to be put on the agenda to go through to the house floor.  

Here are some pictures:

The first is Senator Gary Smith and I with the official bill. 

Here is Representative Gregory Miller, myself, and Senator Gary Smith. During our two days at the capitol the first day I was observing and taking mental notes. The second day the house of representatives didn't meet until the afternoon and I had a scheduled meeting with Senator Smith. Anyway, we were unable to meet with Representative Miller, once the bill made it's way to the house of representative we needed someone to take the bill over and Senator Smith recommended Representative Miller. With a stroke of luck, Representative Miller was down the hall in a small committee Monday morning too, so Senator Smith went and got him so Crystal (the head of the GRC with the National MS Society) and I could meet him. We happened to be near the state seal so she took a picture near the seal for us!