starting year #5

I am wrapping up 4 years since my diagnosis of ms. As I start my 5th year I can only imagine what lies ahead. I still get the “You don’t look sick” or the “You look so good” and I just smile. The people that don’t have ms don’t realize or remember that we carry this with us 24 hours a day. We constantly manage our pain and continue to learn pain management as it progresses. On the days that I don’t look so good, I don’t leave the house. You will rarely see me when I am feeling really bad. I would be lying to you if I said that it wasn’t that bad. I constantly lie to myself. I have pushed through and continued life the best that I can. I have done a few things that I thought that I never would have been able to do. I have had really good days and met some really great people because of my ms. I have been in really dark places and not wanted to come out because of my ms. A lot of people don’t understand the meds that I take are only going to slow down the progression of my disease not cure it or make it better. It gets so hard to explain it over and over again. Then I look at others that have had ms for 25 years and know that I have a long way to go if I make it that far. That’s a lot of explaining and I admire and respect all of you for what you deal with every minute. Another tricky question is “Are your meds working”. I wish I had a better answer for that one. I really don’t know if any of them are really slowing down anything or if it is still moving through my body at its own pace. I had a MRI today and I will have my 17th infusion of tysabri in 4 days. This also just happens to be ms awareness week. The following Monday, March 15th, 2010 is my diagnosis date from back in 06. This is a lot to take in and think about. 17 months on tysabri seems crazy to me. I can’t believe that I have been on it that long. I have given myself 101 injections of avonex, 296 injections of copaxone and had 17 infusions of tysabri. I am so tired of feeling like I do and it chips away at us a little more every day. Dragging myself to work every day and putting on the happy face for everyone. My hands and fingers getting worse after they let up for maybe a day or two. My Ribs still feel like they are broken and I am giving up hope that they will ever feel any better than they do now. How do I feel after 4 years of having ms? I hate it. With every fiber of my being I hate it. I also know that I have to continue to live. I have to show others with ms that we can accomplish things when we try. We have to realistic about what we try but we have to continue to try. I have almost finished writing my second book and I am trying to finish up some music projects that I started a while back. Some days I feel like why even bother trying and then I stop feeling sorry for myself and keep trying until I can do it. I know that I will wake up in the same diseased body everyday and that I have a choice of what to do. I choose to keep moving.