Favorite Quote

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

Thursday, September 10, 2009

The Art of Normalcy

I should be ashamed of myself.  It's been five months since my last entry.  I apologize, and though have said it post after post, I won't let it happen again.  Now, where to start...

First off, I've hit the one year "fake" remission mark.  I refer to this as my "fake" or "partial" remission mark b/c it marks a year of me not pooing blood.  I did, however, continue to have uncontrollable bowel movements (uncontrollable in the sense that if I didn't get to a bathroom at a moments notice I would have to compete with my dog for a bush to poo behind).  So, because there was no bleeding but still uncontrollable bowel movements I call it "fake/partial" remission.  It's a partial remission for me because my body no longer required steroids to keep me from bleeding.  Not needing steroids was a huge accomplishment all in itself.  

Last year, I went into full remission November 26th, 2008.  The day before Thanksgiving.  I will hit my one year full remission mark soon.  No bleeding/no uncontrollable bowel movements.  Sometimes I still can't believe it.  Words cannot describe how blessed and thankful I am.  Alleluia I tell you.   

To those of you out there battling with unbearable Crohn's or Ulcerative Colitis flares, it will get better.  I promise it will.  Don't give up.  Three years ago there was a moment in my life that I honestly thought my dog (then two years old) would outlive me.  I was newly diagnosed, felt incredibly alone, had a raging headache, and was so weak I couldn't really move.  I was lying on my bed staring at the dog and thought to myself  "There is no way I'm going to make it to my 30th birthday.  The damn dog's going to outlive me." I was 25 at the time and I believed it.  I honestly, 100% believed it.  For the next two years thereafter I was constantly sick with flare after flare.  It was a vicious roller coaster.  I didn't have a normal life.  I had absolutely no control of my body.  Life as I knew it had been turned upside down and inside out.  I would get extremely angry at people who would go into remission or who had been in remission for long periods of time.  People whose symptoms just went away.  I was angry because though I hoped and prayed that would happen to me, I couldn't fathom it.  I had a severe case of the illness and couldn't see the light at the end of the tunnel (though I desperately wanted too).  After two years I thought that those in remission must have had milder forms of the disease, and that I was totally screwed.  It was a real crappy deal (no pun intended).  So, amidst all this rambling, I'm just trying to tell you that it will get better.  Your disease, whether it be Crohn's or Ulcerative Colitis, will go into remission.  It's just going to take your body time to work itself out.  When it's ready, it will go into remission.  Don't lose hope.  It took me over two years to reach some sort of stability.  The same will happen for you.  It's completely normal and okay to be angry at those in remission(I was there), but don't lose the faith.  

Now, on to me actually calling myself "normal."  Those of you that know me know that I am far from normal.  BUT, according to my Gastro Doc,  Dr Greene, I'm normal!  

At the end of May I picked up a nasty virus.  I believed I got this virus because of my suppressed immune system (Remicade is an immunosuppressant).  I explained to Dr. Greene that I was angry that I had gotten sick, but that I knew the Remicade was definitely to blame.  I told him I was sick and tired of not having a "normal" immune system and that I wished my body would just act "normal."  Dr. Greene calmly smiled, looked at me, and said, "Emma, you are normal.  You probably would have gotten this virus if you weren't on Remicade.  You need to start living your life normally."  I paused for a second, processing what he had just said.  I was normal?  What the?!  After that visit with my doc, my mind frame changed.  It's apparent to me now that that's all I needed to hear.  I went downstairs after he told me I was normal and got my Remicade (aka Mouse Juice) Infusion and was on my bike the NEXT day, riding strong.  And to top that off, I raced a few days later. 

Getting ready for my race


I did WAY better in this race (in June) than I did back in March.  I didn't win, but I was out there.  It felt great to race again.  I was excited b/c my super awesome Grammy GIRL was there to watch me race.  Before the race Matt reminded me that I had gotten my infusion a few days before and that I should be proud of myself for just getting out there.  Definitely a different mindset that I had back in college, but he was right.  Life was different.  I'll be fast again, it's just going to take me a little longer than most due to my lil "situations."  But hey, I'm "normal" now, so race season next year is gunna be a blast! 

On a more serious note, I needed to hear my doc say that I was normal.  I had, after all, lived in a Crohn's bubble where every sickness (flares) were directly related to the disease for two plus years.  Since I wasn't pooing blood or having uncontrollable bowel movements (thank goodness) I blamed the Remicade.  It was, after all, an immunosuppressant.  I had never had a non-Crohn's type illness since being diagnosed back in 2006.  As you can imagine, it was weird picking up a virus and it not being related to Crohn's.  It was completely foreign to me.  I forgot that "normal" people get sick too. 

I still take precautions, but have decided to do "normal" things that I wouldn't even consider before.  I'm getting into backpacking (NEVER thought I would do anything remotely close to it) and am planning a 96 mile backpacking trip into the wilderness next summer.  Call me crazy, but hey, my doc said I'm normal!  I will obviously take precautions and be smart about it, but ultimately want to do this.  When I told my sis about this trip she said, "Are you sure you can do that with your Crohn's?  Are you sure that's a good idea?  What are you going to eat? What if you get sick?"  With a smile I replied, "I'm normal now."

Breaking through the clouds at the top of Hurricane Ridge in the Olympic Mountains