Favorite Quote

"We cannot change the cards we are dealt, just how we play the hand."
-Randy Pausch

Sunday, March 22, 2009

Live Your Life

I have now been in remission for 6 months.  I'm overwhelmed with emotion.  6 months...for some reason that sounds so much more successful than 4 months, or 5 months, or 5.99 months.
I always prayed, hoped, and had faith that I would stabilize and go into remission for a long period of time (preferably forever).  But had you asked me this time last year if I thought I would be in remission for 6 months I would have said no.  I'm just being honest.  You've got to understand that I was living the vicious prednisone cycle.  If you haven't been following my blog, I'll break it down to you like this.  For 2.5 years I would poo blood and in turn get really sick, get prescribed prednsione, go into remission, and 3-6 weeks after getting off the prednisone I would relapse.  That's just how it went.  It sucked. 

When I was first put on my mouse juice (aka Remicade) it didn't help.  In fact, my mouse juice didn't really kick in until this past July when my doc doubled the dosage and put me on 500mg, which is about 9mg/kg (much thanks to my super awesome nurse Cindy [pictured above] for giving me the correct numbers!! Cindy is one of the nurses that administers my mouse juice at my new infusion center).

It's awesome being in remission.  It's more than I could have ever hoped for.  But honestly, it's also a freakin' emotional roller coaster for me.  It's bittersweet.  I want it to last forever.  I feel like it will last forever, and that's what I'm hoping for, but I also fear that it will be ripped away from me should my dormant intestines decide to awake.  And I, apparently, have no control of that.  It pisses me off.  It makes me angry.  When I have a crazy hard workout on the bike I wonder if I would be able to do that same challenging ride flaring.  I wonder how different life would be.  I wonder if I would be able to race.  And like most people, my mind is often my worst enemy.  My personal trainer over the summer told me that my mind was my worst enemy over and over again.  He told me that I constantly limit myself and sell myself short b/c I let my mind get the best of me.  I achieved so much with him, and did so many things I never thought possible b/c I thought I was "too sick."  And I did a lot of this while flaring.  I climbed a freakin mountain on my bike(that I was scared to climb) while flaring.  And not only did I climb it, I owned it.  

I've been angry since my infusion mostly b/c I've been letting my mind get the best of me.  First off, my poor hubby fell off of his cyclocross bike (a combination of a road bike/mountain bike) on Thursday (the day after my infusion) and broke his collarbone and cracked his shoulder blade.  That was a totally stressful time but luckily he is OK (we'll find out if he will need surgery this coming Friday).  I also started thinking about the road racing season, how mediocre I had performed the first race of the season (March 7th), feeling fatigued after my infusion, etc etc.  

It just all got to me.  A plethora of emotions.

But all the emotions were masking the true culprit of my frustration and negativity.  In truth, it all came down to this:  I have been absolutely terrified that I will relapse and be stripped of my "normal" flare-free life.  I have been carrying that heavy burden emotion around with me since I realized that this remission was the real deal (I realized this January 2009).  Being in remission now for 6 months has been awesome, and it has given me a taste of what it's like to be normal, not sick, stable.  And I like it.  And can't bare the thought of having it taken from me.  

But while in yoga yesterday, I finally realized that it was time to let go.  I realized that if I didn't let it go it would eat me up and I wouldn't be able to fully enjoy anything to it's fullest potential.  I just gotta go with the flow.  I've known this for months but couldn't surrender my inner fear of relapsing.  

But today, while riding my bike (of course), I was finally ready to let go, and not be scared of letting go.  I've kicked that damn fear to the curb now.  I've let it go.  I am no longer going to spend this time worrying.  It does no good.

I'm blessed I'm in remisison.  And I hate to say it, but I'm blessed that it is Crohn's that I have and not something worse.  This disease has taught me a lot about myself.  It has taught me what is truly important in life.  It could always be so much worse.  There are countless people my age and younger (and of course, older) who will not recover from their life altering illnesses such as cancer or severe chronic illness.  And to you all, my heart goes out to you.  I have not forgotten you, nor will I ever.  Especially you, Mr. Akre.  I often think about you and pray you are doing well.  If anybody can defy the odds, it's you.  Keep fighting the good fight and hang in there!   

And to the healthy folks out there, do not take your health for granted.  Nothing pisses me off more than hearing somebody brag about how they spend every wknd binge drinking, or abusing their bodies.  DO NOT take your health for granted.  Respect it and be thankful.  You have no idea how good you've got it...

But I don't know if you've truly got it better than I.  My illness, once I accepted it, taught me to see life how it is.  It has taught me to truly appreciate nature, family, life, love, and living.  My illness has also given me the opportunity to meet amazing people who are fighting incurable illness, who are suffering from chronic illness, and cancer survivors (one of whom was supposed to be dead 10 years ago).  Nope, he refused to listen to the doc who told him he wasn't going to live very long.  

It was hard giving up control and accepting that when my body flares I'm simply along for the ride.  And when in remission it has been hard giving up the fear of relapsing.  But that's all over now.

I'm going to live my life...   

The above pic is from last Wednesday, which was the 6 month mark.  Much love and thanks to my super awesome nurse Cindy who gave me great peace, comfort and inner strength during my first infusion in Seattle this past January.  Cindy is the nurse that first told me about "The Body Soul" which inspired my sole February blog post.  To read this post, click here

Cindy takin' care of business in the pic above.  Oh, also of the utmost importance.  The ladies at this awesome infusion center always gets my vein on the first stick.  I can't tell you how awesome that is.  Especially considering there was a time in the past when I got stuck 9 times.  I always dreaded infusion days b/c I didn't want to get stuck a million times.  It really gets old and can bring a person to the brink of tears quite quickly (no, I never cried).  So again, much thanks and love to the nurses at Minor and James Infusion Center for making my infusions as painless as possible.  You gals ROCK. 


Xster said...

Congrats Emma - Just when you think you will never let go, them time was right and you (your mind and body) did. Cycling saved and changed my life in so many ways. Keep enjoying the ride, on and off the bike

Grammy said...


*Maricela* said...

I love you
sooooooo MUCH!
Still fighting hard!
Thats what I love about you!<3!
Your a GREAT Aunt!
Cant wait to see you!

kim. said...

i have to start remicade on monday and in searching for information on how i would feel after it i found your blog. im glad i found someone its helping and with the same condition as me. thanks for sharing :D