Friday, February 7, 2014

Courage to bloom

The past four years I have been under the impression that I was "managing" my
MS, when in truth I was trying to ignore it.  I pushed through, stiff upper
lip and all. I thought if I just plowed through life, running full steam
ahead that I would "beat" this disease.  I pushed it out of my mind, as best
I could, trying to prove that this could and would not change me or my life.
My parents always said I had to learn things the hard way...and "the light (finally)
dawns on Marblehead". 

Last summer, after getting some test results back my neurologist suggested
that I consider changing my course of drug therapy.  Over the past months since I have
been trying to decide if this is something I want to do.  A very smart person
in my life asked me a question I had never asked myself..."what is your plan
for managing your MS?"  At first I was honestly insulted...I got up every morning
and faced the day, I wasn't crying a pity party in my soup. I was forging ahead! 
I had a do what ever my neurologist told me to do...that's why I go to
a specialist,right?  I thought I had done pretty good considering the circumstances. 
I was doing the best I could...or was I?  I was then asked..."is that it?"  
I started thinking and I had to admit to myself that I really didn't have a plan. I was in denial.

According to the 5 stages of grief "Acceptance means that you've grasped the reality of your situation
and you're ready to incorporate that reality into your life. " Hmmm...I think in the
back of my mind acceptance meant that I was defeated.  I have really struggled with
this idea.  To be honest I am still struggling with it.  Ever fiber of my being has been telling me
that acknowledging this is wrestling with defeat and defeat is unacceptable.  But I had to admit
my plan wasn't really working anymore (if it ever did).  So I started to do what I do best, research.
There is so much information out there it is overwhelming and intimidating.  Where the hell do
I begin?  Since I now realize that relying solely on the medical community is no longer an option for me my new plan is to look for ways to attack this on all fronts.  It's a necessary turn in the road. 
I know it won't be easy but I am going to try to keep my mind open to all that is out there for me
to tap into.  I have to remember that this too is moving forward, the game plan has just shifted...but I am still IN the game. 

To that very smart person in my life...thank you.  Many times it's hard to see the forest
through the trees and it takes someone with courage to point that out.  Thank you for
challenging me to be the best person I can be and thank you for reminding me that it is
always worth the risk to bloom.

"and the day came when the risk to remain tight in a bud was greater than the
risk it took to bloom"  Anais Nin

Thursday, January 30, 2014

Endurance, perserverance for the race we have before us

What a fantastic year it has been!  2013 brought so many wonderful experiences and we made so many amazing memories!!  As many of you know I got married this past September.  It’s been a whirlwind.  God has truly blessed me…growing our family to five daughters, giving us the means to expand our home and add 3 additional bedrooms, listing and selling my townhome in just 5 weeks, and of course most importantly finding the most incredible man to spend the rest of my life with. 

It’s been 4 years since I was diagnosed with MS and my life has seen many changes.  Some, as you can see from above, have been more than I could ever have dreamed of and others quite frankly have been a nightmare.  The physical and cognitive changes that MS has made to my brain, therefore my body, can be quite discouraging at times.  The physical symptoms have relatively stayed the same; numbness in my limbs, spatial issues, balance difficulties, pain in my back that has been not so lovingly named the” MS hug” along with extreme fatigue.   Cognitively, I have a pretty bad scar on my brain somewhere that has caused great memory loss.  I have lost complete conversations.  I have missed appointments that I didn’t remember scheduling.  I have forgotten some of the “little things” that make up the special memories of time I have spent with loved ones.  While there has been many a dark moment for me physically, emotionally and cognitively I can truly say that I am blessed. 

Every day I get up and out of bed I am thankful.  Thankful for the ability to walk.  Thankful for the ability to see.  Thankful that that I have been given a new day.  Thankful that I have true JOY in my heart.  Thankful for my amazing husband.  Thankful for our five absolutely beautiful, inside and out, daughters.  And believe it or not, Thankful I was diagnosed with MS.

I believe we are all given different races to run.  I believe we all have a purpose. I believe God Almighty has a plan.  I believe his plan is for me to share my story with others.  To encourage, lift up and give hope to those who may not feel as if they have any and to be an example to my daughters of perseverance regardless of life’s challenges. To be a witness to the amazing things God has for all of us, for even when we are at our lowest, He is working miracles for us. 

I share all of this with you so that you may see the HOPE I have for my future.  The HOPE I have that as many come together as one we will find a CURE for this disease.  I am asking again this year for you to share your blessings with me.  I ask for your support as our MS Walk Team, the Village People, fundraise to find a CURE and to support those with MS.  I am asking for you to be by my side as I run the race set out before me. 

“Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us” –Hebrews 12:1-2

I thank you all from the bottom of my heart