Monday, March 30, 2015




This has been one of the most gruelling weeks of my road back to walking since I began the process in February of this year.  It has certainly been a test of my patience, (which apparently I have none)………  I remember walking on my long legs at the end of October 2013 like it was yesterday, and I want to be that person NOW.  It is hard when you know you are capable and you have to wait, and allow the process to happen smartly and safely.  I am still having issues with my right femur which gives a whole new meaning to “skin on bone”.  There is not enough protection there so we have to carefully create that protection through the process of check sockets!

This photo of my stump completely black and blue from a socket from summer of 2013 - is a reminder of why I switched systems. I injured my elbow in February, and have a torn medial tendon.  I went to back to J.E. Hangers to talk sockets and have my arm properly fixed with a brace to protect it from further injury.   I have been with J.E. Hangers since the early ’70’s with all my leg and back braces, that it feels like home to be back there.  I know my physiatrist Dr. Duranleau was happy to see the progress I had made against the odds and will do anything he can to help me succeed.  He also is clear that drug therapy is not an option for me.  I hate NSAIDS & narcotics.  If I wanted to be a junkie, I would have never agreed to amputate.  The amputations were supposed to extend my life and allow me to lead a better quality of life drug free.  So no drugs at all costs.  
I have enough problems with my colon that hates me from the radiation treatments without adding chemicals.

I knew the statistics of the success of an above knee amputee at my age, with chronic illness (as apposed to a healthy amputee who lost their limbs as a result of an accident).  I knew my Lupus and debilitated body from cancer and treatments would leave me mountains to climb.  
I just had to BELIEVE!  I'll keep climbing.... but sometimes it feels like we are going so SLOW!
Of course every time we were close I was telling my prosthetist “It’s good”.  He would reply, “Yes, but not perfect”.  
My prosthetist knows me so he checked over and over until he was convinced it was good enough for me to try at home.  It is like trying on a new pair of shoes as a child, and you want them so bad, so even if your toes are squished a little, or it is loose a little you tell your parent that they are “good”.  Well a “little” good is not ok when it comes to your long term comfort and performance in prostheses sockets.  Especially as a bilateral above knee, proper fit of the sockets is essential to how well I walk, and what I am able to achieve.  

I finally got the green light to bring them home for a trial period.  There will be places that need tweaking, that is for sure, but we are starting as good as it gets.  Now it is up to me.  

Now I am home with stubbies and starting over again.  It was a concern how I was going to get them off with only one arm since I couldn't push it away while depressing the valve at the same time.  I invented this way.  A rope can fit in my back pack & I can take it anywhere with me & tie it to anything .  I think I a secretly related to MacGyver! ;) 

So we hit another milestone - one that 18  months ago was only a dream, one more thing on my bucket list.  Will my body be able to battle Lupus and handle the weight and effort of the prosthetics?  Nobody knows.  And I don't do maybe's. So I will do what I know how to do well.  I will live in them moment.   I will go “One step at a time” and see what happens.  But it is my hope and dream that this will lead to me also being back in my long legs, and outside all summer gardening, skateboarding my concrete wave, swimming. and walking!!  Eventually running.  Maybe jumping on a trampoline? (Hint hint André) 

I have HOPE that this leg of the journey (excuse the pun LOL) will be a little better than the last.  I am trying my hardest to make it happen.  Eating what I am allowed.  Exercising smartly with a fitness trainer and doing my job in training smart.  

At LIVESTRONG we believe that “Unity is strength, Knowledge is power and Attitude is everything". As a volunteer LIVESTRONG Leader I am proud of the foundations mission and am grateful for the opportunity to lead people to a place that can provide them with free support and services to help them with a cancer Dx and beyond.
Let’s face it - it is not a secret how passionate I am about giving back to a foundation that has given me so much support and inspiration to FIGHT LIKE HELL.  So when you see that great BIG humongous smile on my face as I learn to walk again, remember - MY positive ATTITUDE is a wonderful LIVESTRONG tool when I was fighting for my life.  NOW I fight to improve the lives of others who hear those words…. “You’ve got cancer”.  I am smiling because I know the greatest gift of all is to #PAY IT FORWARD on a global level with my other awesome leaders! 
Want to see me walking up my ramp without giving it a second thought the very first time I come home with the new sockets & stubbies?? I never ever thought I could not do this.  I have ATTITUDE & GRATITUDE! 

If there is one major gift that the friends at the LIVESTRONG Foundation has given me it is the gift of hope.  That I will never suffer alone.  And that they “get it”!  You can’ t always dump on family.  Your family  love you so much that sometimes they want to prevent you from hurting, so they “suggest” that perhaps it is too much.  They take it so personally.  So LIVESTRONG is there for them too.  

  .@LIVESTRONG's support services & online resources are FREE for anyone facing #cancer.  #LIVESTRONGHelps 

(Don't forget to mark May 9th on you calendars to participate in my #OurRaceYourPace event benefiting LIVESTRONG)

*Love* & *Light* has been my signature for the past 20 years, and may it continue to help lead you when darkness comes.

*Love* & *Light* has been my signature for the past 20 years, and may it continue to help lead you when darkness comes.



@teamnanny on Twitter

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