What does MS look like?

   

     The other day I was In a meeting and It somehow came up that I have MS.  The gentleman across the desk looked at me and said "I would have never in a million years guessed you have MS!", to which I replied "Didn't you notice my Quasi Moto limp??"  He then said "Yes, I noticed you were limping, but you just don't look like someone who has MS".

     I'm not sure exactly what MS looks like, and though many of the symptoms of MS are invisible, I really thought my limp was a dead give away.  Maybe he was under the assumption I was injured while snow skiing.  I could try to use the Ninja fight story, but we already decided I could never pass for a Ninja:)

     However, with MS being so unpredictable and every day being a mystery, I figured I may as well at least have fun on this roller coaster ride.  I decided why not keep all of the "Curious Georges" guessing as well:)

     In any given moment when walking towards a puzzled "on looker" I have one of two choices... I can either put a grimacing look on my face and give them the chance to dream up a plethora of horrific scenarios, or I can give them a goofy smile from ear to ear and really blow their minds; because if I was injured I most certainly would not be smiling:)  Either way, as soon as there's eye contact it's almost certain to result in a lengthy conversation...(and maybe a new BFF as well)

     MS comes in many different colors, shapes and sizes, it's like snow flakes: no two are alike. Who knows, I may not fit the "typical" mold, If there even is such a thing, but for me... along with my "turbo leg"...  this is what MS looks like:)

Have a great weekend!!

Christine:)

A rebel with a cause

          Most of you already know by now that I'm a girl on a mission, and I won't quit for anything.  So my next challenge was to see how long it would take to get my friends from Hanger Clinic, where I got my "turbo leg" to join my team. Okay, okay, I know it's the Walkaide (some day I'll convince them to change the name!!) 

     My Orthotist, Mike Bursztynski was on board from the get go, but now I needed to convince some of the others to commit.  I told them I planned to have a huge team and my goal was to see my team raise 25,000.00 in honor of the 25th anniversary Of The Bike-To-The-Bay.

     One of the guys said " Sure, it's easy for you, no one's gonna turn down a sweet girl!"  But on the contrary, I think it has more to do with the fact that I'm a rebel with a cause.  I make it very clear that I am very passionate about this cause, not only for myself, but all of my friends who want to make a difference with me.

     If I have to use the "sweet girl"  approach then I guess that's what I'll do!!  What ever it takes to get the job done:)

Tom, Me, Jeff and Mike

          Incidentally, it must be working because as you can see, Jeff Kuehn and Tom Sandy  joined Mike, and now they're all on board!

 Please Join us!!


Have a great day!!

Christine:)

Back to the days of "normal"

     Back in the day, I scrambled around like a chicken with my head cut off and I heard time and time again "SLOW DOWN!"  There wasn't a person I wouldn't leave in my dust and I loved every single minute of it. The thing is, I've always been a "hurry up and wait" kind of  girl. The faster I would go, the sooner I would get there. 

    However, now with footdrop there have been many times that my brain says run but the message is sent by pony express.  The end result is my brain getting there about one second before my body and that can end in disaster.  I'm considering wearing my bike helmet 24/7:)

     My reasons for riding in the Bike-To-The-Bay are several.  One reason of course is to take that leap of faith that I can do it and encourage others to do the same.  Secondly, I want to raise awareness about this devastating disease that impacts the lives of so many.  But most importantly, the money raised from this event is used not only to aid those people right in our community who need financial assistance to control this disease, but to fund research to end it all together.

     Thanks to all of the generous donations, we now have eleven drugs available to slow down the progression, and though there is still no cure they are so close to a breakthrough for myelin repair which could potentially take people like me back to the days of "normal". I won't give up because I know it will happen!  I have total confidence that one day I will hear those words again "SLOW DOWN!"  Until then I'll just keep moving:)  Who's with me?!?!

Have a great day!

Christine:)

   

My super powers

 

  I'm sure we've all wished we had super powers at one time or another, and while it's only a fantasy, I sometimes think I actually have them.  To be able to fly would be a great super power.  The contraption on my leg would make me think I have this gift.

     I cherish my "turbo leg" or "power pack"... okay, it's really a walkaide, but "turbo leg" sounds much cooler:)  Not only does it prevent me from tripping on my toe (most of the time...), but it opens up a whole lot of dialogue.  When I ride my bike I don't wear it because it's very cumbersome, but take away the bike and this tool is a godsend.

     When I volunteered at the last Bike-To-The-Bay it was very obvious.  This device actually does give me "super powers" because I can morph into anything my creative little mind can think of.  I can go from being "on house arrest" to "a sports injury" all in the drop of a hat.

      On the second day of the Bike-To-The-Bay  they were calling for  light rain, so I wanted to avoid a power outage on my "turbo leg".  Since last year, they've come out with a protective cover,  but before that I had to improvise.  This actually worked out to my advantage.  I wrapped it in this pink scarf and all of a sudden I was a Ninja!  When asked why the limp, I responded "This is nothing, you should see the other guy!"

     The local chapter of the National MS Society holds a monthly support group meeting and it just so happens they were having some people come to talk about Tai Chi classes.  This was perfect!  I can look like a Ninja:)  Of course they had to set me straight; Tai Chi is Chinese, a Ninja is Japanese... hey, tomato-tamoto:)  What ever... this was my chance!!

pretty scary huh?!  Lol

     It's all just a matter of perspective, but when it comes down to it, I really think we all have "super powers" in one way or another:)

Have a great weekend!

Christine:)

My "best" just got "better"

  

   One thing I have never been known to be is a quitter.  It doesn't matter what curve balls life throws me I always manage to find a way to adjust and find a new "normal".  MS threw a curve ball and it wasn't long before I figured out how to juggle my life so the challenges became just a way of life.

     Sure, back in the day I ran and roller bladed and walked for miles on end.  Now my footdrop only makes me work harder to keep active with what I have.  I won't lie, I sometimes feel like crawling after only a mile of walking but that's why I force myself to do almost two miles everyday on the treadmill  and then I throw in a dose of strength training just for good measure.  This became my new "normal", day by day I had a strategy.  I wasn't about to give up on my body or my life.

     However, sometimes we need to step outside our comfort zone before we're forced to see that our "best" could be "better".  I had a valid excuse for not running a marathon but what was my excuse for not riding my bike?  No toes needed for that...

     It took a nudge to get me convinced but it wasn't long before I discovered I was capable of riding in the Bike-To-The-Bay.  To think I could have gone through the rest of my life convincing myself and others that my "best" was good enough.  Everything happens for a reason and thanks to that vote of confidence my "best" just got better!

Have a great day!

Christine:)