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The Hardest Thing I have Ever Done

It is quiet.  The air is still. I hear a soft pounding in my chest and my feet on the asphalt.  My heart reminds me of the task at hand: kee...

Friday, March 16, 2012

MS Week Comes to a Close

So, even though MS Month goes on for the entire month of March, MS Week itself comes to a close with me running a 9 miler with my team this Sunday, followed by a 5K in the afternoon called the 2012 Jog Your Brain (not related to MS Week, but connected in the Kevin Bacon sense).  I have a new brain scientist friend named Christina who turned me on to the race.  I hope some others will come out to play.  They have  kids run, too!

Here's how I celebrated MS Week:

Monday, I sulked a bit (honest) but by Tuesday, I felt better.  I reposted my fund raiser and my mom made a nice donation (thanks MOM! I love you!)  Wednesday, I ran 12 miles and that was good.  It was tough, but good.  I also filled out my March Madness bracket.  Again, tough, but good. Thursday, I got a note from Emily, my good friend (also organizer of the MS Stingers team in San Diego last year) telling me that Niagra Falls was painted orange for MS Week.  Very cool!

Thursday, I also went shoe (window) shopping with my friend Judy.  We tried on outrageous shoes and we laughed a bunch!  There was no such thing as sulking.  She has that effect on me.  And then today, I ran another 4 miles...only I ran today in my old Brooks and not my Asics.  Hmmm.  They felt really good.  Also, for the first time in a long time my legs felt strong.  Maybe the fatigue was all in my head (that means something in multiple ways for someone like me [a little brain humor]).

Anyway, we're finishing today up with a blanket fort in Gabriella's room and then movie night on the laptop in said blanket fort.  That's all I need today...maybe some popcorn, too.

Just so you know, since I was first diagnosed with MS, they have developed new medicines that have really made a difference in the way people deal with this chronic illness (caution, I am about to ask for your money).  There is even an oral medication now and there was not one just a few years ago when I was telling my doctor about my needle phobia.  This is a direct result of contributions to organizations like the MS Society.  I actually have a fund raiser set up that correlates with my marathon run coming this April.  You can contribute if you want.  It is super easy.  If you do, I will wear your name on my shirt for all of the 26.2 miles (though I am tempted to pull a a Brandi Chastaine at the end : )  Here's the link to my fund raiser (not to the sports bra incident):


Please know that your dollars have made a direct and immediate difference and will continue to help so many.  I believe in my heart that MS is more than treatable, perhaps even curable.  How long has it been since we cured a disease?  We're close.  Be a part of it.  We can't do it alone.

I hope you have had an amazing MS Week...as amazing as mine!  Or even more so!!  And may you all have many more amazing MS Weeks with mobility and family and friends and so much more.  It's the most wonderful time of the year!

Friday, March 9, 2012

Thursday, March 8, 2012

Truth Be Told

Buddhist meditation teacher Tara Brach calls what I am experiencing "the trance of fear."  For the past few weeks since the results of the MRI, I have been living in my fear, overwhelmed by my emotions and distant from reality.  It has changed the way I sleep, eat, run and even interact with those around me.  I feel shut down, like I have been going around the house of my life flipping various switches to 'off' and putting emotions away.  I've left out fear; now I'm not sure what to do with it.

Truth be told, I am actually just being dramatic.  Seriously.  Part of the reason I react the way that I do is because I just don't know how I am supposed to react. I forget that there is no norm for feelings about chronic illness or how we are supposed to deal with it.  We just are (supposed to deal with it, that is).

So, here it is.  I went in for the 6 month MRI after the doctor took me off of the injections.  I felt great.  I was training to run a half marathon.  Life was good.  The scan was clean.  No new lesions; no new activity.  In the world of MS, no news really IS good news.  So, I got another 12 month vacation off of the injections.  The doctor joked with me about the half marathon saying I should've went for the whole thing...so I did.  I ran Portland in October--the whole thing-- having been off of the injections for just over 1 year.  I felt great.  I ran strong.  All was well.  Then I thought, if I did that, what else can I do?   Some of you remember, if you have been reading along.  So I signed up to run my hometown marathon here in Eugene.  Then ...

Then I had a bad winter.  I felt sluggish, fatigued.  My right leg started getting this warm feeling traveling up and down it.  The tingling in my left leg had returned, and for longer periods now.  My running slowed.  I blamed the bad weather, my busy schedule, my diet, stress--it couldn't be MS related.

So, then I got my 12 month scan.

One new lesion.


Not several.  Not debilitating exacerbations. Nothing dramatic.  Except for one very dramatic thing:  me.  I am dramatic.  I am the flare to the powder keg here.  (See what I mean?  What powder keg?)

I have to tell you, recognizing that I am dramatic has been very helpful.  Helpful in many areas of my life.

You have to understand that after 6 years of new new activity with my MS, one new lesion is enough to tip me over. Again, there is no norm on how I should react.  No manual on emotions for chronic illness sufferers.  Feelings for Dummies, With A Special Section On Dealing With Disease.  Ooo, a book like that would do great on the B&N bargain table, though.

So what do I do now?

This Sunday, we will run 17 miles.  I plan to pace just less than 11 minute miles, going as slow as I can.  If I get it done in less than 3 hours, I will be amazed.  This is no time for me to showboat--even to myself.  Oh, I'm still running the marathon this spring in Eugene.  You'd better believe I am.  I plan to run until I no longer can.  Even if I no longer can run, maybe I'll walk...take in more of the scenery as I do.

On the not so dramatic news front, the doctor and I decided that I would remain off of the injections for another 6 months and do another MRI at that time.  Hmmm... That's enough time to train for the Victoria marathon, right?

Oh, look! Here's a sandcastle my girls built: