Girl with MS - Empowering You to Thrive with Multiple Sclerosis: Interviewing Buck at Sundance, now time for MS

Girl with MS - Empowering You to Thrive with Multiple Sclerosis: Interviewing Buck at Sundance, now time for MS

a break

I have had a lot on mind lately and haven’t updated this blog in quite a while. I am about to have my 21st Tysabri infusion. Almost 2 years on Tysabri and no new lesions. For those that don’t know what that means in the overall picture it’s hard to explain. You can have no new lesions but you can still be going downhill in other areas. You can have new lesions and feel fine which has happened to me in the past. I hate when it is time for an MRI because the outcome doesn’t really mean shit to me. It is just a way for the doctors to track the number of lesions on your brain. That being said it makes ms all the more understandable for people that don’t have it, right? I’m just kidding. It’s frustrating to try and understand things even when you are the one with ms. the last few months have been up and down for me but I do know that Tysabri is the right drug for me. It definitely has slowed down progression of my ms but I still have progression in the disease. Its very frustrating when you think things are just rolling along and then BAM you have another setback. This just seems to be the way my ms works on me and some of my other ms brothers and sisters. I cannot play the guitar at all right now and like the beginning I don’t know when or if I will be able to again. I have had several issues with fatigue over the last few months, more than the year before. More days it feels like Im walking through mud with heavy legs than past years. The cognition (brain fog) is really becoming noticeable to me. Not being able to find the right words and forgetting stuff a lot. This could all have to do with the heat and just being tired or it could be the beginning of the end of a few things. I just don’t know. I will keep pressing on and trying to do what I can do when I can do it but not to the extreme that I have in the past. On my treatment with Tysabri I have NO PLANS to change this. I am happy with the results I am getting with Tysabri and the fact that I have had no side effects with the drug. The new procedure CCSVI that everyone is talking about is on my mind also. I am still on the fence and not ready to argue for either side. Both sides make some good and bad points and I just need more time on that one. I do enjoy all of the videos and blogs on ccsvi from both sides. I think at this point we need to hear points from both sides. Keep argueing you guys, I like it. I will put my guitars in their cases today. I just don’t have the desire to try and play them for now. I was really disappointed in the lack of sales for the last 2 cds that I put out and also just the lukewarm interest in both. I do really appreciate all of you that did buy one of the cds or download some tunes. I especially appreciate those of you that even just wrote me and are friends of mine. That means a lot to me. The first book that I wrote did better than the cds and I made some really great friends that also have ms and even spouses of others with ms understood a lot more after reading it. The thing is on these projects that I have done is not to get rich or even make that much money. You can look at the base prices on café press and other places that I sell through and see that I only make a dollar off of each item that I sell and I don’t even keep that. I put my new book up on facebook for free, what I have of it so far and will post it in its entirety when completed. I started and did these things out of my love for making music and sharing my life affected by ms with others. As far as music goes for me. Evil Diesel is my last planned project and I am only singing in this project. I had written all of the songs before my hands got too bad to play and I’m sure Nate can write the guitar lines to any additional songs in the future if needed. My plan is only to sing from this day forward for Evil Diesel. When and if that project ends or runs it’s course it will be a matter of how my health is as to whether or not I try anything else. At this point I would say no. My focus will be on my days left for living. I will continue to write for ms connections magazine occasionally and I am in the process of working things out to try and become a speaker for Biogen/ Idec (Tysabri). Those 2 or 3 things will keep me busy along with trying to continue to work at a day job with a civil engineering firm. Nate is updating the evil diesel facebook page most of the time so there will be nothing that slides by without an announcement from that site. I just wanted to update the people that are interested in what’s going on with me right now. I will try to check in on facebook as much as I can just to see what you guys are up to from my phone. I just need some time away from a few things right now. I guess that I’m in a phase of reprioritizing the things that I’m doing and leaving a footprint that will be felt for years to come as an advocate for spreading awareness about multiple sclerosis. I welcome any emails to me at chriscoxrox@live.com I just didn’t want anyone to think I was ignoring requests for stuff, hugs, smiles and all of that other stuff on facebook. I just may not be around as much as I used to be.
Much Love,
CC

dose of evil diesel goes online today

My new cd available on itunes now http://ping.fm/igC62

Digital Download of my new CD AVAILABLE NOW !! http://ping.fm/upVqC
CD's available soon............

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