It's not just about me.

I occasionally feel inadequate as a blogger.  I began this project on the suggestion of my brother.  I had been sending out email updates to family and friends, and found out that they were forwarding them to others.  How flattering!  But I was feeling self conscious about sending out stories about me, myself, and I.  What if someone didn't really want to hear about the latest nitty gritty on me?  Little bro suggested that I begin this blog so that anyone who was interested in my journey could follow, and they could choose to check in, or not, on their own schedule.  This was a year ago, and I may not be remembering it 100% correctly, but it makes him look good, so what the heck!

My goal for this blog was to simply track my personal experience with CCSVI and its treatment.  I could never have imagined that it would be such a wild ride.  I am very involved in many aspects of this new discovery, but I limit my blog posts to my original purpose:  sharing my personal journey.  Occasionally I feel shallow talking all Nicole, all the time.  But I am an expert on me, so I leave it to others to share and analyze the nuances of this fast moving wave of CCSVI.

I have MS blogger friends who are far more eloquent, and cover much more ground than I.  My favorite blog is written by Marc Stecker a.k.a. Wheelchair Kamikazi.  He has deservedly just won a Medical Blog Award for his amazingly well written, informative, insightful, beautiful blog.  He shares his personal story, but does so much more.  He discusses the latest developments in MS and CCSVI with a very mature, even tempered voice.  He is also a gifted artist, and posts videos and photographs for all to enjoy.

While the goals for my blog are more modest, I am committed to doing everything I can to further the cause!  I am a proud member Patient Advisory Board of the CCSVI Alliance (with the famous Marc Stecker, among others.)  I am also trying to work to improve access to treatment for people in the Washington, D.C area.

Recently I met with a neurologist who told me point blank that he is skeptical of CCSVI.  In the next breath he told me that he has seen Dr. Zamboni speak, has read everything about the vascular relationship to MS, and is planning on attending sessions about CCSVI at the big Neurology convention in Hawaii.  A skeptical doctor is just fine with me, but one who is clearly open minded and committed to learning more is even better.  What more can we ask for?

I was the first person he had met who has been treated for CCSVI.  He asked lots of questions, and I was proud to share all of my "wisdom" with him.

On Friday I met with an Interventional Radiologist from a major university hospital.  He would very much like to do a study on CCSVI, but is lacking a willing neurologist partner.  I'm working on a little match making on his behalf.  Hopefully I'll have more to report on this soon.

I am telling you all of this to relieve myself of the burden of beginning to feel like a narcissist.  I still think there is merit to documenting my personal journey, if for nobody's benefit other than my own.  Anyone who is tired of hearing about me is free to not read.  

As a proud pioneer in this uncharted field of CCSVI, I feel an obligation to work for the benefit of everyone who wants Liberation.  With hard work and a little luck, I have successfully treated my lame veins three times now.  I am reaping benefits beyond my wildest dreams.  But I cannot, and will not stop now.  I have too many friend who still wait for treatment.  I also have two beautiful daughters who will hopefully never need treatment for CCSVI, but I can't know that today.  I have to keep working for them, and everyone who wants the opportunities that I have had to feel better.

My good health has allowed me to enjoy life again.  But it has also given me the strength to work hard to expand access to treatment, and spread the gospel of CCSVI.  If I ever stop doing that, then we can have a discussion about a narcissist in the house.  Till then I think I'm doing o.k.