Thursday, December 2, 2010

Busy, Busy, Busy - Who Said Retirement Would Be Relaxing?

This will be a departure from my usual posts.  I  just thought I'd update everyone on what I've been doing with all my "free" time since, hooray!, retirement.

Well first I had to straighten out all the mistakes that were made when I left work - that was stressful and took a week to fix but it's done.  Then I had to deal with Social Security.  'Nuff said.  No point going over it here - done, finished, all good.

Next: My son has been been on my case for years about exercise.  More specifically, that I don't.   I always was able to come back with, "After working a 10 hour day starting at 5:30 AM I have no energy left to even stand up let alone go to the gym."   Well folks, that won't cut it anymore so I went and joined the local (dare I say it), Senior Center.  Shhh don't tell anyone.   Just so happens they have some great classes there and they are either free or very inexpensive.  So I signed up for Chair Exercise and Chair Yoga and Beginning Tai Chi.   So far I've only gone to the chair exercise class and man, it was freakin' hard!  Who knew?  But I can see that I will clearly benefit from this so that will be one I will continue.  Tai Chi was this morning but I never got there - was too busy as you'll see later.  Chair Yoga starts next week.  And Dec. 14th I start a pastels drawing class.  I must be out of my mind.

Then I started on a new MS medication called LDN (Low Dose Naltraxone).  This is not an "approved" MS drug but my neurologist said it was fine if I wanted to try it since, no surprise, he didn't have any other options for me.  SPMS is not very treatable, even with fancy drugs.  LDN required me to do a lot of research which I did very thoroughly and that took time.  So many people were so kind to help with great info but I had to look in hundreds of places, so I decided to start a Face Book group for 'newbies' to the LDN world.  I invited all my MS friends and some LDN experts I'd met during the research and last night the site went live!  So this all took a lot of my time.  Here's the link:  

Also on Face Book is a group led by my friend Sandra who lives in Rhode Island.  She had the wonderful idea to make a calendar showing the faces and stories of people who were 'Liberated' (i.e. treated with angioplasy for CCSVI) and sell it to raise money for CCSVI research.  So many people responded and wanted to be in the calendar (over 200 from all around the world) that it turned into a book!  Sandra is a graphic artist and will do a great job of designing the book and layout and choosing the photos and stories.  But she needed help with all the detail stuff (getting releases, keeping track of members and their date and place of procedure, finding a printer, distribution, working with the non-profit group who will benefit, checking the page often, etc.).  In short, she needed ME!  Anyone who knows me knows this is what I do well.  So I jumped in and offered to help and I'm loving every minute of it - but it is taking some time for sure.  Not complaining - the finished book will be awesome!  Hope you all will buy one to support the cause.  We're shooting for end of February to get it out.
OK - so we don't go back to Master Chorale rehearsals until January and I didn't want to go that long without singing.  I learned about something called the Virtual Choir, a very cool project on YouTube done by Eric Whitacre, a composer and choral conductor.  Rather than explain the whole thing here, just go and check out the one they made last year - you'll get it. 
Master Chorale at Wold Performing Arts Center
  Lux Aurumque - Virtual Choir - Eric Whitacre   

I submitted my entry for "Sleep" as an alto 1 and when the project is done I'll put a link to the finished video on the blog. Can't wait!  But it took me time to learn the part and record my entry. I'm still not thrilled with it but there's a deadline so in it went.

Tonight I'm going to a fundraiser in West Palm Beach and will speak about my experience with MS and CCSVI from the patient perspective.  This supports the research going on in Buffalo, NY and I'm glad to do this.  I was also asked to be part of a two day event in March which will be really exciting!  A symposium in Tampa at Moffitt Cancer Center (which is where my doctor practices) with a lot of experts and doctors in the field sharing information.  I will be again be speaking from a patient perspective.  And the next day, a fundraising walk with the proceeds going to the CCSVI Alliance.  I'm so honored to have been asked to speak and to be working with this incredible organization.  Thanks go to my good friend and fellow pioneer in Arslan's Army, Nicki W. who got me involved.

Visit their website under my links box
Tomorrow I have a phone conference scheduled with the VP of the CCSVI Alliance to discuss how the book project and this event can partner with each other to raise money for the Alliance.  This is so exciting to me.  This small  project that Sandra started could turn into something huge!  

Who said one person can't make a difference?  I've met so many amazing people along the CCSVI journey and all of them have made a difference on their own, but when we partner to work together, watch out world!

What else have I been up to?  Reading Nora Ephron's fantastic, sad, funny, book, I Remember Nothing.  How did Ms. Ephron know all about my life?  This is a must read for anyone over the age of 50.  You'll laugh, you'll cry, you'll forget where you left the book!

So I did end up talking about MS, Music and Me!  Thank you for spending time in my little corner of cyberspace.  See you next time - when I get some more time.  This retirement stuff is exhausting!

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