One week before treatment starts

In one week from today I meet Dr. Robins, the very person who could put my RSD and other pain conditions into remission.  As I lie in bed at 6:45 am, alone, no sleep, I ponder how really amazing this opportunity for a better life came to fruition.  My mind reaches for the stars in hopes of the "miracle" I have prayed for and been praying for during the last fours years since my RSD began.  My heart feels different, hearts get hurt, disappointed, saddened, broken, and emotionally connected, so it remains reserved to protect itself!

There is no way to begin but from the very start of the chain of events that lead me to this incredible journey.  I decided early this year (2010) that I wanted to attend the Achilles walk/Run/Roll for Hope and Possibility and complete the five miler for the second time in my RSD journey.  Some say I had a death wish but so many others were inspired that I would attempt such a feat with all the pain conditions I have.  In the back of my mind, and the forefront of my decision making, was the thought that this very well could possibly be my last year to walk the 5 miles.  I finished the 5 mile Achilles back in 2008 but just two years later my pain is more intense, much more widespread, and not being managed well at all with current treatments.  I knew with the treacherous terrain of Central Park NY (major hills that feel like they will never end) that this would test my stamina, my motivation to succeed and push my body past normal limits of exercise and duration. 

The decision is made, we (myself, hubby, sister Donna and her friend Kimberly) are attending this event, walking for RSDSA on June 27th, 2010.  Now comes the daunting task of fundraising.  My goal was to match or exceed 2008's goal of 1000.00!  The brainstorming begins......more like brain drizzle.....fellow RSDers and Fibromites will get this joke!  Bill graciously and surprisingly wrote this beautiful letter to the editor of our local Camden paper.  Although this did not ultimately result in the donations we hoped to receive it did however raise awareness to my community and sparked 4 women in the area that also suffer with RSD to contact me.  This alone was worth the effort on Bill's part.  One woman actually lived around the corner from our home, we walked past her house a million times and could see her backyard from our porch!!!  Two women had never talked to anyone with RSD before and they were full of hope and inspiration that we were educating people of our community on this horrible disease.  I immediately wanted to start a small support group or tea/lunch group once a month just so we all could meet and keep updated and share information but it had to be put on the back burner......but still simmering!!!

Bill offered to go talk to and share information with our local assemblyman who later had a small donation sent to us.  So Bill figured what the hey, I might as well go around the village and hang posters and talk to local businesses in hopes of more donations.  It may not have ended up in huge amounts of monetary donations but every penny counts and the awareness and education was happening!

Since so many causes had awareness bands and other merchandise items we decided to search online and just see what our options were.  Bill found a company that allowed you to create your own band and when bought in bulk was cost effective enough that part of the sales could go to RSDSA for my fundraising efforts.  We took a leap of faith and figured how hard could this be?????  Oh my, did the orders flood my inbox and we panicked, we are not prepared for this at all.  But we managed very well and took each order and logged it in a database and when the funds were received we would work together to ship out.  These awareness bands went to Canada, Australia, England, Porto Rico and almost every state in between.  In the end, just before the walk, we raised over 1500.00 for RSDSA.  Because of my efforts and my story I was contacted by RSDSA to be interviewed the morning of the big day (please see the link below for YOUTUBE to view).  I was pumped, now I had to finish the full five, after all I said I would for all those who couldn't, I can Not let my friends in pain down. 

It was a hot, humid day in NY but nothing was going to get in my way from crossing that 5 miler finish line.....except maybe my body!  With a supportive team (which includes spiritual support as well)  and my hubby cheering me on to keep going the whole way I DID IT!!! I crossed that finish line for the second time in 3 years with an average daily pain level of a 7 or higher.  

I don't know the why's and how's but Trudy asked me to do her blog talk radio show, Living with RSD, to discuss and hopefully inspire others to educate, raise awareness and do fundraising.  I was literally terrified and had all kinds of thoughts floating around like how and why I was so interesting, and could I possibly fill an hour spot. It was a breeze......Trudy and Laura (cohost) are amazing, wonderful women who CAN talk like no one I have met......wait that is a lie, my sister would be good competition for them!!! (love you sis) But, they made me comfortable and so relaxed the time flew by so fast I don't think I covered all I had planned on!  USARSD.ORG the wonderful site I volunteer for got plugged and Jason (president, co-founder) was asked to do the show on August 9th 2010.  I felt on top of the world, never before did I accept or want to be in any spotlight.  I liked the shadows, behind the scenes editing, creating, designing.....definitely not the type to be out there in the open in front of everyone but obviously that was changing and God was leading me somewhere, at the time I had no idea where but He was holding my hand re-assuring me all the way.  

Exactly one week after my interview with Trudy and Laura Dr. Robins from The Healing Center in NYC was on her show to discuss intravenous ozone therapy (again I have links below for you to read more about what it is etc...).  No one in the US, that he knew of, was ever treated with ozone who had RSD but he firmly believed he could possibly help.  To validate his statements he offered Trudy to treat one RSDer as research at no cost, and in return if it works that person would do his radio show and follow up with Trudy's.  So, the burden fell upon Trudy and Laura to choose amongst all those interested and pick one person to represent all RSDers, they had to fit certain criteria (I don't know what it entailed) and a means to get to him (in Manhattan) and stay for as long as it takes. 

I mentioned that I was interested and had a means to live close to the Dr. at my Mom's on Long Island for as long as I had to.  Mind you, I am only thinking with the "I want relief now, I am at a last resort with pain management and treatments" brain!  Not in my wildest dreams did I think I would be picked with so many RSDers suffering and needing help.  I was wrong!  I was asked to do it, to represent RSDers all over and possibly if it worked, make available a new treatment to relieve the excruciating pain we experience 24/7!  The excitement of it all was overwhelming and too good to be true!  Free treatment, possible remission, no medications added and no negative side effects....really???? Could it really be this easy after 4 years of trying every medication I could, every therapy available to me and being tortured with injections in my spine??

I immediately picked up the phone to arrange my plans with my Mom (who would give me the world if she knew I would feel better, thank you Mom!) and secure a car (my brother's, thank you Dan!), arrange how to see Bill (hubby, whom I planned on leaving behind for months love you honey for all your sacrifices), finish classes I started with Bill which are so important to both of us (will discuss in later blogs) and plan the when I was going, what I needed to bring and what I had to accomplish before I walked away from my current life, home, church, friends and pets!!!