living is easy with your eyes closed - john lennon

THANK YOU Kortni Bermel- $100.00 donation to the ms walk and Thank you Melinda for your donation also ! You Guys are awesome !!!! There is still time to donate to the team if anybody else would like to help fight MS

http://ping.fm/FPCOs

snowing in waxahachie

chriscoxrox ms walk team 2010- walk-run or just donate - Official team page-
http://ping.fm/eelHA

MS WALK --- A TEAM FOR ME---- WOW!!!

MS WALK

Today was one of those days where something catches you of guard and you really just don’t know what to say at that moment of impact. I opened my email and saw one from my sister. I immediately clicked on it ready to read a joke or look at a funny picture. It was neither. She was asking my permission to post a page on facebook that she had created. She started a team to walk for me in the MS walk next weekend in Addison. These teams walk to raise money for research to help find a cure for ms. It is all run through the National Multiple Sclerosis Society and it is a great program. She has been taking the time to organize and now recruit members for the team next weekend or get them just to donate to the NMSS. This is a big task to take on. I know how hard it is to try and get people to do stuff like this. I try to get people to come to my website and listen to my music and read my book and that is a never ending task with a lot of rejection. Now, she is trying to get people to walk for my life and the lives of others affected by MS. This is an amazing thing she is doing. That is so weird to even say “for my life”. I have never even thought of it like that. I have done things for the NMSS to raise money and I am sure that I have influenced others to buy bracelets or donate to them. My sister was taking on the task of creating this team in my name for the NMSS. How cool is that? That is so awesome that I don’t even know where to start. I guess I started in the place I always do. My blog is my place to vent and share news like this. I am so proud of my sister for doing this. If you are reading this please help make her team a success. It’s not just for me or her. It’s for everyone with MS. It’s only one day out of your life or a few clicks of your mouse. That’s not a lot to ask for the people that carry ms with them everyday of their life and will carry it until a cure is found. Please join or donate to the team she made in my name and help us reach our goal for this years event.

Thank you Tammy, I love you,
Your little brother


Team Page

http://main.nationalmssociety.org/site/TR/Walk/TXHWalkEvents?team_id=202609&pg=team&fr_id=12740&s_tafId=136707

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.