Happy New Year to all!!!
Wow! What a game-changing year I’ve had!!
Let’s get real! Over the last ten years, MS has taken a lot from me. 2013 was the year that I decided to start taking those things back. At the top of the list of my reclaimed losses was my ability to dream. To hope and to plan for my future without the uncertainty of my MS acting as a constant roadblock to each decision is a gift that I never thought I could receive. From planning a vacation, a life event, a career change, or my financial future, every question related to those plans was met with the standard answer “I’ll have to see where I’m at with my MS, first.” Because MS affords you no guarantees but progression and a certain, yet, unpredictable increase in disability, definitive planning was a luxury I couldn’t afford. I, along with my family, was living a life on hold.
Enter HSCT (stem cell transplant), hard work, and overwhelming support from family, friends and a community, and, today, I’m sitting here helping my daughter plan her wedding, which I will be walking to without the aid of a trekking pole. I will be driving to a wedding in South Carolina in May. Soon, I’ll be reserving my vacation for the summer of 2015 which won’t be limited to accommodations that don’t have stairs. I could go on and on about the limitations that no longer exist in my life because I had a stem cell transplant to halt the progression and activity of my MS.
Imagine someone being wrongly-convicted of a crime and imprisoned for 10+ years, only to have the warden come to your jail cell and say, “You’ve been pardoned. You are free to go.” THAT is how I feel! Reprogramming my brain to concentrate on the things that I CAN plan on doing, instead of what I CAN’T, is not as easy as you might think, but, I’m up for the task!
– I have successfully completed two of the four additional rounds of followup chemo that were recommended by Dr. Fedorenko when I was in Russia. They have been uneventful and I have tolerated them well. I will have my last dose in May, 2014. My true recovery clock will begin when that goal has been reached.
– I continue to take physical therapy three days a week. Because of that, my strength and capabilities have increased tremendously. Not only do I have to recover from five weeks of hospitalization, but, years of muscles and joints that were re-wired to function improperly. I have a long way to go, but, I no longer feel like I’m trying to beat my MS clock.
– To date, I have not used my trekking pole to walk or navigate steps since June, 2013. I do still utilize a foot brace for my right foot which still has a certain degree of foot drop that waxes and wanes. I foresee that changing, but, will be completely content if it remains in that condition for the duration.
– I have and will continue to spread the word about HSCT and to support my SOFA (Sisterhood of the Fedorenko Alliance) Sisters who have been and will be going to Moscow for their own fight for freedom.
Although my posts will remain less frequent than when I was in Moscow, I will do my best to keep you updated on my progress. Just know, that in between those posts, I will be living my life to fullest and free from the chains of my MS. Sweet dreams are made of this!!
Peace, love and a Happy New Year!!