Thursday, February 19, 2015

2015 - The Road Back - Giving It All I’ve Got (and then some).

Yes I still want a trampoline for my birthday!!! :) 
I am going to begin this blog entry with some facts on energy expenditure of amputees because without an understanding of what it takes to be able to use prosthetics as a BAK (Bilateral Above Knee) amputee it is difficult to understand my achievements and goals. It is not just about the balance & the movement & not falling on your face, albeit gracefully as one friend on a beach once put it.  Before I put any emotion and my own thoughts into todays blog I just wanted to share with you a few of the more interesting easy to understand facts on energy expenditure using prosthetic legs.  

Leg amputees tire more quickly than their able bodied peers because an amputee who walks same distance as a non-amputee will have a higher level of oxygen consumption —-amputees vs non-amputees indicate an increase in oxygen consumption for:
• below-knee amputees from 9% to 20%
• above-knee amputees from 45% to 70%
  • bilateral above-knee amputees up to 300%  (I am in this group)
This increased oxygen consumption is the reason amputees seem to get out of breath much more quickly. They need more energy to do tasks - even simply walking across a room requires more oxygen. The higher the level of amputation, the more energy required to walk. Just an upwards slope in the terrain of 10% doubles the energy required, and a 20-25% slope triples it. Carrying any weight (shoes, boots, gear) add another 40% on top of the already given 300-400%.


I can't believe the winter is almost over and we're heading into spring although it doesn't look like it outside right now at the moment with snow falling & the level still nighter than my bedroom window sill, it will all be gone in time for my birthday in May (where I really hope to have a trampoline set up in my back yard) & for my Teamnanny’s second annual grassroots event supporting the LIVESTRONG Foundation.  

I am proud of my accomplishments over the past 12 months.  My time was not wasted.  I did fulfill my obligations as a volunteer LIVESTRONG Leader, and I did train Dakota to be the awesome service dog that he is.  I did manage to do a lot of things, but nothing ever comes easy in my life.

This spring I set my sights high.  At the beginning of 2014 I was very angry at having to give up walking after spending months of rehab getting myself vertical and accomplishing what too many professionals said was the impossible, walking, and ever more impossible, walking unaided  But I had friends who had accomplished this! So why was it so bloody hard for me?  I think one of my amputee role models ED put it best.  I am a hybrid.  I am not just an amputee.  I am an amputee who also battles chronic illness daily.  
If I was “just” an amputee by “accident”, with no other major health challenges, I am sure I would be out running marathons with my little brother Danny by now.  After all my first miracle of 2002 before my cancer dx had me headed that way! But my reality is that I live with Lupus, and all the collateral damage my cancer treatments did to my body.  I did survive my cancer, but I will live with the damage of side effects of the treatments for the rest of my life. I don't like this, but I must accept it to move forward.

At rehab in summer - fall of 2013 I had awesome physical therapists along with a super prosthetist, and I did the unexpected.  I walked, unaided.  I passed the tests.  Unfortunately the “kit” of prostheses that I was approved for at rehab was not the correct one for me and my “condition”. I know this frustrated my team because I had so much potential. I was approved for my second knee though, in great thanks to my physiotherapist report, after numerous refusals.   I was (and still am) under limitations of medicare, because we have no medical insurance.  Any extra pieces that I needed we had to pay out of our fixed income, or ask for help from family, so I was screwed.  My family does not have those funds.  None of my friends do.  I somehow always knew that I would have to earn sponsorship.  

As  I watched the people with insurance get better ‘kits’ and I knew I had to make do with what I could afford.  On top of this I required help from my physiotherapists, or André to don the type of prosthetic sockets they built me.  André needed his second shoulder replacement surgery, so he could not help me put on my fibreglass contact sockets after I left rehab which were put on with parachutes which required great effort in pulling.  Neither one of us had that shoulder capability .  So I went through the rest of last winter & last spring and summer using my power wheelchair.  My body hated me giving me all kinds of challenges.  I wasn't happy.  I was barely able to do any of my new skills I had accomplished, even swimming and skateboarding was beyond my ability at the time because of my difficult “hybrid” body.  I barely made it to Austin and back, we survived my sweetheart's second shoulder replacement surgery and moved on.  

I was happy and extremely blessed that I wasn't in the kind of pain anymore that I had been in for 40 years.  Before the decision to amputate, I had lost the dynamic ability in my legs that were braced to have zero mobility, they were uncomfortable and painful, so I was heavily using narcotics 24/7.  I decided to amputate to free myself of uncontrollable pain and agony, and the damage that narcotics were doing to the rest of my body.  Since the amputations I take no narcotics, and am more mobile than ever, even without prosthetics.  

So why this push to be back up vertical so badly now??

The answer is pretty basic.  I am not happy that my wheelchair gets stuck in grass in my own yard and was extremely anxious of this happening away from home. My wheelchair’s inability to work on anything than concrete outside put me in constant risk of being trapped, and alone.  I could always get down and crawl away, but really? I am a passionate gardener.  I love what we have done to grow our property.  But I can only enjoy it crawling.  My wheelchair always gets stuck.

So as we began this new year, I realized that my body wasn't going to get better so I just had to get more adaptive with the health challenges that did not want to leave.  I had to work out harder. I had to lose the anger and gain more mental strength.  I had to stretch and I had to push to the very limit of my body’s capabilities.   All in preparation to start again from the beginning with new sockets that I could put on by myself without the help of Andre.  I waited out my medicare mandatory one year at rehab, and manned up and made the call to Benoit who was my prosthetist before the second leg came off.  He told me he could make me a kit that I could manage on my own.   I would walk again, not because I am just stubborn and have something to prove.  No.  I will walk again because I want to go where my motorized wheelchair cannot go. I wanted to be able to walk through dirt and mud different types of terrain, because getting suck in that damn chair during the few months that we can actually be outside frustrates the hell out of me.  I want to play at the park again with Cassidy and her brothers.  I want to go where my chair can’t.   I am very proficient without any legs and there isn't anything I cannot accomplish, if I try.  But I cannot make my wheelchair work where it will not work.  The chair sucks.  I do not. 

Since injuring my shoulder and back in 1998 I have not been able to push a manual wheelchair without excruciating pain.  This injury mostly due to the osteoporosis I had at the time is in operable and therefore I've been receiving cortisone injections in that area of my back and shoulder blade for the past 17 years. This is not the same movement that I am able to manage when on my skateboard.  The manual wheelchair is the first and most important job of Dakota, so that I may remain independent.  I *hate* being pushed.  HATE it.  Had to let myself be pushed lately with my arm injury and no matter how I tried, I could not put a positive spin on it. 

The balance of training and excepting my body’s physical limitations is a very thin line in my world of living with my numerous health challenges.  I want to walk to be complete.  Technology is out there.  We may not be able to ever afford it, but someday some sponsor may want to help.  I can hope. When we learned that my prognosis of survival was only 10 months I knew at that moment that statistic was based on other peoples journey’s with my cancer pathology.  A statistic is simply a guess of the accumulation of other people's achievements and failures - not your own.  You do not have to be that statistic. Be your own statistic.  Be your own hero.  Believe in yourself.  I did and this year we will turn those “months” into “9 years”.    

Presently I am a bilateral above knee amputee with a braced right arm (my dominant one to boot), living with Lupus and numerous health problems.  Perseverance, determination and attitude will get me where I want to be.  My constant health challenges will be my enemy.  One that I am familiar with.  One that I have overcome in the past.  I was discouraged by the added challenges of this past year.  I will not lie.  I was disappointed.  I had lost sight of my own motto.  But anger and disappointment turned into unparalleled optimism.  Giving up & being handicapped is not an option.  I am clear who is watching me.  I will show them.  They call me “Nanny”.  They love me “just the way I am”. 

Now I am on yet another journey.  I have named it “The Road Back”.  Whatever shape or form that takes, this is what I know for sure. Today I woke up and I am alive. Which means I am very blessed.   I am happy. Staying positive is my choice.  I will need your support to succeed.  You will know when and why, because I will reach out  (but feel free to volunteer)!  But as my LIVESTRONG & TEAMNANNY families have shown me over and over again.  WE are STRONGER TOGETHER.  #TEAMNANNY #TheRoadBack #STILLSTRONG #LIVESTRONG #

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



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