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

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.

Avoid evil deeds as a man who loves life avoids poison.

Be greatly aware of reality as you meet or confront it each day, and from that become fit enough to deal with it

An idea that is developed and put into action is more important than an idea that exists only as an idea.

BETTER than a thousand hollow words is one word that brings peace.

Though all his life a fool associates with a wise man, he may no more comprehend the Truth than a spoon tastes the flavor of the soup

Hope everyone had a great V-DAY

I've hit my reset button.....

feb-update-blog

Feb 9th, 2010

Things don't always go as planned. especially when you have ms. I have been fighting many battles and the road has split in many directions for me. My solo CD still needs work to be completed. Some of that is my fault and some of it is not being able to pin down guest musicians for parts I would like to add. I am having a hard time holding a guitar pick and playing the guitar right now. I'm having to tape the pick in my fingers and try to play. Most days I just can't strum in the rhythm I need. This leads to give up for the day and the next thing you know weeks have gone by. I have also been preoccupied by one of my side projects. Writing songs and doing vocals for a rock project called "Evil Diesel". I can play sloppy guitar tracks and my buddy Nate does them over for me. As long as I get the idea across to him it all works out great. Drums were recorded for 8 tracks so far and the guitar is almost done. Bass needs to be added and I need to do the final vocals for them. This has changed my mood for writing stuff right now and I'm staying in the moment. Back to one might have to wait a little longer to be finished. SBTS has also been put on the back burner for now. I'm not sure what really will happen with that project. A few bumps in the road have come up with that project. The way things are looking right now is "Evil Diesel" will be the first project done. It is something completely different from anything you could ever imagine. You will be shocked when you hear it. I have heard 4 of the tracks that are nearly complete and it amazes me to listen to it and know that it's us. It's been so easy to fall into, we should have done this 15 years ago. It's what I've wanted to do for a long time but just never even tried. It's raw and loud and just puts it all out there. I love doing the acoustic stuff and need to finish Back to one but I guess the time just isn't right for that one. I will finish Back to one, I'm just not sure when. I have also been working on my second book and continue to write a little each day. I have read it quite a few times also trying to see what areas need more or less detail. It's so hard to break your life down into these little sections. I will keep this book short also so the reader doesn't get bored. My ms has been jacking with me but not knocking me out. The usual problems with my hands and the feeling of broken ribs. Some days my hands feel so inflamed that it feels like they are going to pop. I know that the Tysabri infusions are making me feel better in general but I still have the normal little problems that just wont go away. It's no where as bad as it was last year but some days just really suck. Fatigue has been kicking my ass but I probably do too much anyway. The days that I want to play my guitar and my hands just wont allow it are a kick in the crotch. I loose my momentum and the song writing for that day is lost. My legs have felt much better on Tysabri. I still have bad days and they are weak on some days but nothing is perfect. I have an mri coming up next month and that will tell me if I have any new brain or spine lesions. I am confidant that the results will be positive. I am fairly certain that most of the damage and pain that I deal with today was caused during my very first attack. It went on too long without proper treatment. That's just how it played out. No one knew what the hell was wrong with me and it kept running wild until I found my neurologist in 2006 that helped me fight back. He is still my doc today and we are still fighting. I hope to knock all of my projects out by or before this summer. I will let you know more details soon.

Tysabri infusion 16 Friday morning

Believe nothing, no matter where you read it, or who said it, no matter if I have said it, unless it agrees with your own reason and your own common sense. [Buddha]

Words have the power to both destroy and heal. When words are both true and kind, they can change our world.

No seed ever sees the flower.

I do not believe in a fate that falls on men however they act; but I do believe in a fate that falls on them unless they act

However many holy words you read, however many you speak, what good will they do you if you do not act on upon them?

The beauty of life is, while we cannot undo what is done,
we can see it, understand it, learn from it and change.
So that every new moment is spent not in regret, guilt, fear or anger,
but in wisdom, understanding and love.

Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned.

Just as the highest and the lowest notes are equally inaudible, so perhaps, is the greatest sense and the greatest nonsense equally unintelligible.