Favorite Quote

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


Wednesday, April 8, 2009

Food 101

I've received tons of questions regarding my dietary restrictions, what I eat on a daily basis, etc etc.

Next week (starting Monday) I will post my daily meals for all to see!  If wheatgrass, goats milk, and a carrot/beet/ginger/celery/onion juiced veggie drink sounds good to you then check back next week!

I'm also introducing the "Are you Serious?" series to my blog.  Basically I'll be calling out ridiculousness as I see/hear it...

Check back soon...  =)

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. 

Sunday, March 15, 2009

March Winter Wonderland!!


This morning we woke up to A LOT more snow than originally expected!!  My muuumm (think Cartman) is here to visit for the week, so I'm glad she got to experience WA winter beauty (even though it's...uh...March)!  

What to do when there is lots of snow?  Experience natures beauty!  Below are pics we took during our crazy long hike on the trials behind our house!!  Enjoy!! =)





Wednesday, March 4, 2009

Saturday "Soul" Ride


I had a crazy challenging ride this past Saturday with my hubby and his bro.  I was planning on riding easy b/c I had ridden long the day before, but the rush of exploring new territory overtook my logic and we kept riding.  It was extremely hilly, and I only had 3 luna moons to sustain me on a 3+ hour ride!  NOT GOOD!  

But, it definitely taught me a thing or two about myself.  Riding always forces me to face things within myself that I've been trying to ignore.  Like I've said time and time again, riding is my therapy.  Not only physically, but emotionally and spiritually.  

So...this is my confession.

Every ride for me has been full of pure joy, but also great sadness and fear.  Full of joy because I am actually healthy enough to ride and am at the absolute strongest and healthiest I have been in the past three years.  The sadness kicks in when I remember everything I have been through with this monster of a disease.  And fear.  The worst of them all.  Fear of a relapse.  Fear that at an instant my body can choose to revolt and send me into a downward spiral.  Strip me of everything I have been working towards.  Fear that I wouldn't be strong enough to race.  These are the thoughts I've had week after week.  I love cycling so much, and am having so much fun with it, that I can't bare the thought of not being able to do so.

But this ride changed my thoughts of sadness and fear.  This ride showed me what I'm made of.  It was viciously hilly.  I didn't have much food.  I was hitting the wall.  I was starting to second guess myself, my training, everything that makes me, well, me.  

But then my soul kicked in.  The final hill of my ride, I was brought to tears.  Because I realized that I have no reason to fear.  I have been through so much, and have ultimately come out on top.  I have gotten a grasp on this disease and will not let it control my life.  I will not be constantly scared that I will relapse.  I just won't.  I'm tired of letting it control my life.

When I'm sick, I become a prisoner to the toilet.  I'll be damned that when I'm in remission I'm going to constantly be scared of getting sick and having my "normal" life ripped away.  No.  Not anymore.

I have faith that I will stay in remission.  And I won't worry at least once an hour of every day that I will relapse.  Nope.  I'm no longer giving this disease that much control.  

So, through the beautiful suffering of my ride Saturday afternoon I was able to finally face my fear.  And say it out loud for the first time.  I told Matt my great fear, though it took me a few minutes to say it aloud.  I don't know why it was so hard for me to tell him.  He knows my darkest secrets, everything unflattering about me that one could know.  But, letting go of this secret was hard.  Perhaps because it shows my weakness.  I don't know, but I'm glad that I got it out.  

And I'm no longer scared.  Because it is what it is.  

I can tell you one thing, this season I'm going to race my little heart out.  

I have no idea how racing is going to go this year.  My first race of the season is a road race this Saturday.  I'll see how I fare compared to the other girls, and will definitely blog about it!  One thing I know for sure, I'm simply glad to be racing.  This will be my first "real" race since junior year in college!  C-a-razy!

Below are some pics from our Saturday "Soul" ride...

Beautiful Washington!!

Are these two gents brothers or what (Note: Matt's helmet hair)?!

I noticed this tree while suffering up the second to last climb of the day.  I thought it was interesting that leaves were growing out of moss...

It's not easy, but facing your inner fears, fears that lie deep within your soul is the only way to heal and get over it.  Luckily I have cycling to help me get over my fears and continue to heal.  

Thursday, February 5, 2009

The Body Soul


Four months, two weeks. 

It's a beautiful thing.

Words cannot express how lucky, thankful, and happy I am.  After almost three years of relapse after relapse, I have finally stabilized.  I have been in remission, with no bleeding, for four months and two weeks.  I've been on Remicade for over a year now, but it wasn't until my previous doc doubled my Remicade dosage last July that I started slowly stabilizing.  I am getting 550mg per kg of Remicade, and for somebody my size, that's A LOT.  

But, it's working!  I have finally stopped bleeding when pooing.  I have gotten healthy, have been able to ride my bike consistently, and have been loving life.  It's weird to feel "normal."  I feel as though I am fully healed and will never relapse again.  If I didn't know any better I would stop taking my medicine.  But I know better.  Because the medicine, as toxic as it may be, is keeping me healthy.  

I have a new Gastro doc in Seattle and he is phenomenal.  I feel incredibly lucky to have a doctor who is a specialist not only in Gastroenterology, but also Hepatology and Internal Medicine.  He's also board certified and a CCFA Physician Member.  I hit the jackpot with this one!  I've seen him twice and have also had my first Remicade Infusion in Seattle experience.  The Infusion center is WAY different from my Infusion Center in Virginia.  The first thing I noticed was the fact that the chairs didn't look nearly as comfy.  I can deal with uncomfy chairs, but am saddened that we also have the ultimate privacy, which means I can't really talk with other patients receiving their infusions.  Everybody has a story, and I like listening.  Reflecting.  Appreciating.  

The nursing staff is also awesome.  My nurse for the day asked me how long I've been stable.  I said four months.  Since November 26th.  She then asked about my Crohn's history, so I went into the fact that I used to be an Intelligence Officer, couldn't achieve remission, and was sadly medically retired from my profession last April.  I then went on to tell her that I have never been in full remission without the use of steroids until November 26th.  I told her I sleep 8-10 hours a night.  I try to minimize stress in my life.  And I ride my bike.  I told her I've teamed up with Vanderkitten to develop a worldwide club team, which has been extremely successful.  

And that's when she told me she believes in "The Body Soul."  She believes that our bodies often times try to let us know when we are doing something that isn't right for us.  This can be a profession, lifestyle, life situation, etc.  Our bodies will continue to act out until we decide to listen and start doing something that is right for us, and puts us at peace.  And I believe her.  

Had I never gotten sick I would have thought she was a crazy nut.  But almost three years of severe illness will definitely change your view on life.  Her theory, in my opinion, is 100% right.  Cycling feeds my body soul.  If I don't ride, I turn into an extremely unpleasant person.  I can't tell you why, that's just how it goes.

My new doc has also put me on Lialda to help keep my large intestine in check.  He feels that the Remicade alone is not strong enough to keep the sleepy giant known as my large intestine dormant.  My large intestine is a volcano; and he felt that the Lialda, which is an anti-inflammatory for the large intestine, will help keep my large intestine dormant so it won't awaken and erupt me into a flare.  It can only help, so I've been taking it!  It is also the mildest form of medicine for my illness that one can get!  So, I'm on really really toxic, and really really mild.  Getting the best of both worlds I guess!

Now to catch up on my blog since Christmas (yes I have been the biggest blog slacker).  Matt and I have finally settled into our home and absolutely LOVE Washington State.  I never, EVER want to move.  The picture at the top of my blog was taken from my new neighborhood.  That pic is a pic of the Olympic Mountains.  We are surrounded by the Olympic Mountains, Cascade Mountains, and can even see Mt Rainier on a clear day.  Absolutely awesome!

The first day Matt and I moved into our new house we drove down the driveway and were greeted by three deer.  Below are pics of the deer we found in our backyard:



The deer were a nice house warming present, but we knew we wouldn't see much of them as soon as Caesar came home.  Well, a day later, Caesar came home.  And we haven't seen the deer since.  Go figure.  

Lastly, the pic below is a pic of me and the pup on the trail in our neighborhood.  

I seriously can't get over how gorgeous it is out here!  Apparently we have black bears, bobcats, owls, and cougars in our neighborhood.  My neighbor said he saw a black bear on the trail a few weeks ago (aren't bears supposed to be hibernating?)...I totally freaked but he calmly said, "Ah, just raise your hands and start singing, they'll run away."  Not being one to put my life in a wild animals hands and just *hoping* that they'll run away, I bought bear spray.  It shoots 35 feet away and will knock a bear on his ass (at least make the bear feel like it's choking).  Hopefully I'll never have to use it, but if I do, at least I'll be ready!  I mean, people have guns in their homes to protect them from intruders, why not carry freakin' bear spray in bear country (duh).  I am convinced my neighbors think I'm crazy for carrying bear spray, but I think it's preventative mauling...My neighbor also told me that at night a bobcat chills on the porch a few houses up from ours.  Sweet...maybe?  I guess I just have to get used to wildlife.  Wildlife or not, I love it here!

And for my riding buddies...the cycling out here is epic.  And I'm not joking.  I am one to get extremely bored on rides.  I was NOT designed for the flats and get extremely bored when riding in flat terrain.  I'm a climber, and out here, there is nothing but hills.  And nasty ones.  And you never really get a chance to recover because after you climb up one and roll down, you're instantly climbing up another.  We also live up a hill, and it is a mile climb just to get home.  So, after getting completely destroyed during my rides, I still have to climb a beast of a hill just to get home.  I love it.  It will make me stronger and hopefully I'll kick some ass this season.  

Due to moving cross county, a medical problem, and traveling non stop the month of December I haven't been able to ride consistently since November 2nd.  I finally have been consistent for the past three weeks or so, and am getting into shape.  I'm getting excited for the upcoming season and to check out the WA State racing scene.  I know most gals have been training since November...but whatever...it's a LONG season.  The racing season starts the first wknd in March and ends late August. 

 I've got plenty of time to show what I'm made of.  And I can't wait!  At least I know I'll DEFINITELY be racing in the HOTTEST kit in women's cycling today.  Most of the races out here are road races and crits, which is what I love.  Hands down, I hate TT's and won't be doing any this season (unless the TT is climbing up the side of a mountain).  And there ya have it.  

I know this has been a ridiculously long blog posting.  I will definitely update my blog much more frequently in the (near) future.  I'm going for bi-weekly.  Once a week at the least!  =)

To make a long blog entry even longer, I will leave you with the below pic.  It is me on New Years Eve on the Vegas strip (which I DO NOT recommend to anybody and will never do again).  Homeboy definitely looked authentic dressed as The Joker from Batman, but when he(a complete stranger) put his hands on my neck...well...freaky.  

Headin' out to Tour of California next weekend.  Totally stoked!  Until next time...

Friday, January 23, 2009

VANDERKITTEN BABY!!


The Vanderkitten Racing Cycling Club is now up and running!

We have received an overwhelming response on both a national and international level.  It is absolutely awesome!

I cannot describe what it feels like to see your dream take off.  Much thanks and love to Dave, who has made this possible!  

Cycling has been extremely therapeutic for me, and has helped me through the darkest times of my life.  Literally.  Vanderkitten has given me my cycling soul back.  It has resurrected my feisty, "I'm gunna kick your ass in this bike race" attitude.  J-dub showed me the Vanderkitten website well over a year ago, and the rest has been history.  Thanx J-dub!  

Thursday, December 25, 2008

Merry Christmas!!!


Matt, Caesar, and I wish family, friends, and anybody reading this blog a VERY MERRY CHRISTMAS!!!  Please forgive us for not getting Christmas cards out; we just moved to WA State from VA and have been in a constant state of disarray (what else is new)!!



Sunday, December 21, 2008

Let It Snow...


SO, my hubby and I are supposed to be in Arizona right now.  But mother nature, well, she had another plan.  

We spent the night at the Marriott adjacent to the airport last night for the sole purpose of NOT getting snowed in at home as they were expecting a foot of snow throughout the night where we live in WA.  

And our clever lil planned worked, until we got to the airline gate...

We checked our luggage in, checked out the airport mall, and then got to our gate.  It was then that we learned our flight was cancelled.  It went a little something like this:

Airline Worker:  "Flight XXX has been cancelled."
My thoughts: No way, NOT the flight to Phoenix.  It's sunny there.
Airline Worker: "It can be several days until you get rescheduled."
My thoughts: We're going to Phoenix, not our flight.  There are sahuaro's, dirt, and sun there.  Old people from cold climates go there for the winter.  CAN'T BE MY FLIGHT!

And then I looked up.

And saw that the Phoenix flight that was supposed to take off at 0815 was still sitting at the gate.  With passengers on it.  Getting de-iced.  With the frustrated pilot slumped over the controls (and YES, you could see him slumped over the controls).  Well, that's holiday travel for ya!

So yes, it was our flight.  Cancelled.  BUT we were able to reschedule for Christmas Eve, so I won't complain too much.  We had to take a little airport shuttle bus back home.  What was supposed to take an hour and fifteen minutes to get home from the airport ended up taking over four hours.  But we're home safely.  And I got to come home to this:

 So my friends, I leave you with this.  We just have to accept that there are things in this world that we have absolutely NO control over (like cancelled holiday flights!).  And it sucks.  Trust me, I was hella pissed this afternoon.  Today, I had serious issues accepting that there was absolutely nothing I could do to fly out to Arizona.  But then my dad reminded me to just brush it off and keep going.  Kinda like how a duck's feathers repel rain.  It's hard to accept the uncontrollable.  Arg.  But, like Dory in the movie "Finding Nemo," Just Keep Swimming...

Wednesday, December 3, 2008

And Here's To You, Mr. Akre


Mr. Akre, this post is for you...

A week ago I met an individual that I will never, ever forget.  He is a man of great courage, commitment, selflessness, faith, and hope.  And he is, my friends, going to be an anomaly...

As I walked into the Ambulatory Infusion Center my brain was spinning.  I knew I was going to get my Remicade Infusion regardless, but wasn't looking forward to getting poked by a needle, wasn't sure if they were going to find a vein, didn't want to sit there for 3+ hours, etc etc.  As I was waiting to get taken back to my room I looked down at my arms and saw a few healthy veins.  I slyly smiled because I knew that the lil bastards were going to disappear as soon as a needle pierced my skin, or rather, came into the nurses line of sight.  They roll, harden, and hide when it comes to getting pricked.  I firmly believe in the subconscious self.  People, I'm not crazy, it's real.  I don't freak out when I get stuck with a needle.  I can be as calm, cool, and collected as I want to be.  But my veins, well, they have a mind of their own.

I was led back to the four chaired room and sat in between two Chemo patients.  This is when I met the man who made my heart bleed.  

Mr. Akre is a  young man of 59 years old.  As we started chatting I learned that he graduated from The Boat School in 1972, retired as a senior officer from the SWO community, and had a loving wife and a 31 year old daughter with a successful business of her own.  I also learned that he had lung cancer.  And that the docs gave him 7-12 months to live.

We were talking about his cancer when he told me they gave him 7-12.  I stopped for a minute, not sure what I had heard.  I carefully asked, "Wait, you've got 7-12 months left on Chemo?"  Mr. Akre looked at me and said, "No, they say that is my life expectancy."  

I cannot describe the emotions I felt at that moment.  It's like getting hit by an overwhelming emotional mack truck.  Your heart melts, cries, bleeds, wants to reach out and hug this man and tell him everything will be alright and that he will grow old with his wife and see his grandchildren be born and grow...

After I got over my initial shock I looked at him and said, "Don't listen to them, they don't know.  YOU will be the anomaly."  And he smiled.  He's a double major from Boat U in math and engineering.  He knows what being an anomaly means.  And he will be.  Mr. Akre has guts and the drive to survive and beat this thing.  And I'm confident that he will.  When discussing the side effects of Chemo he said, "Even if the chemo makes me really ill I'll do it, because if it gives me one more month, it's worth it."  

And then a man who was supposed to be dead 10 years ago piped in (Mr. Akre was to my right and this man, whose name I don't recall, was to my left).  He said, "Ten years ago they gave me 6 months to live.  I'm still alive today.  It's all about having a positive attitude."  This man had a very rare cancer called liposarcoma, which is cancer of the fat cells.  At the time he was diagnosed there were only 74 documented cases of liposarcoma in the world.  His docs gave him an expiration date, and he kicked them in face by being alive today.  

His comment led to a room wide discussion (three chemo patients, two men and one woman, and our nurse were in the room with me).  Our nurse said that some people get tired of the fight and are just ready to go home.  They are tired from the overwhelming pain and suffering that is not only caused to themselves, but their loved ones as well.  We all agreed that life changing day that we were all fighters and would not be beaten by our illnesses.  We then laughed and joked.  Mr Akre joked that he has paid into social security his entire adult life and will be damned if he doesn't see any of that money!  The man whose name I can't recall joked that when he first married his wife (after he was diagnosed with cancer) he told her that she didn't have to worry about him dying because he didn't want her to be happy a day of her life, and by him dying, she would be happy.  Our room laughed.  Through all of the pain, suffering, and cheating death, we laughed.  Our room was so loud that we could be heard down the hallway.  There was faith and hope in our infusion room that day.  The man who was supposed to be dead 10 years ago was an anomaly.  Mr. Akre is well on his way to becoming an anomaly.  And the woman, well, we never did get to talk to her much, but she laughed and felt the positive spirit that arose in our room that day.  She too, whatever her internal battle is, will be an anomaly.  As for me, though I feel my struggles do not nearly compare to these three individuals, will just keep thanking God for my blessings, health, and wonderful family.   

This was an afternoon that changed my life.  Emotions arose that I never knew existed.  I saw the important part of life that day.  We wake up, complain, go about our normal day to day lives expecting that we will have another day.  We don't worry about possibly only having months to live.  When you look at the world from the eyes of a cancer patient, terminally ill patient, or one who suffers from chronic illness, you will see that things you thought were important were never important at all.  You will then cherish every moment of every day and be thankful for what bit of health yo do have.  And, most importantly, you will be thankful to be alive.

Keep fighting Mr. Akre.  You are, after all, the anomaly.

The below pic was taken on my last infusion day at Portsmouth.


Just to give you an update on myself, I have officially been in remission for 2.75 months WITHOUT the use of prednisone.  This is the first time, in almost three years, the entire time I've had Crohn's, that this has happened.  My Gastro doc more than doubled my original remicade dosage and that seemed to do the trick (GREAT SUCCESS).  

Sadly I have left my Gastro family in VA for a new Gastro fam in WA.  I have my first appointment this Tuesday with my new Gastro doc.  Doc Smith, you will be missed!  For the nurses that took care of me during my infusions, thank you.  For the entire Gastroenterology Department that helped me through relapse after painful relapse, thank you.  You all are awesome and definitely set the bar astoundingly high.  Thank you for taking care of me.  I will miss you all.  =(

And to all of you who have taken the time to read this post and others...I will never go over two months again without an entry!  No excuse for that!  Writing is my therapy, and I hope it helps you in your daily life journeys.  Until next time...

Thursday, October 2, 2008

All Bruised Up

I wrote this post this afternoon while I was getting my infusion at the hospital...

At the moment I’m in the hospital, at the ambulatory infusion center, sitting sandwiched between two women who have Crohn’s.  The girl to my right was, like me, medically retired from the Navy due to the severity of her illness.  The girl to my left has a port, is skinny as hell, and won’t eat much because as soon as she puts anything in her mouth she has to go to the bathroom.  Today there are no chemo patients in my room; just Crohn's patients hoping that remicade, the "miracle drug," will aid us in claiming our health back.  

The girl with the port was pretty bitter, and I can emphathize with her.  Actually, I feel awful for her.  I feel awful for anybody who is sick with cancer or an incurable illness.  I feel awful for a lot of things, but her presence really threw me into an array of emotions.

When she walked in it was as if a dark cloud filled the room with gloom.  My chest filled with the emotion of great sadness.  The presence of that emotion overtook my body and for a brief moment I felt as though a foreign invader had taken my body over and was trying to throw me back into a bout of self pity, sadness, hopelessness, and whatever deep dark emotion one has.  Maybe she reminded me of how awful the disease was.  Maybe it was because she shamelessly stared as three nurses were working on my arms, trying to get a vein.  

It could have been the fact that my veins no longer work properly and decide to roll or harden every time the prick of a needle pushes through my skin.  Or the fact that four veins blew each time the needle was pushed into them.  Or maybe that at that moment I was surrounded by others, just like me, who deal with the roller coaster of being sick again and again.  Not knowing what each day is going to hold.  The frustration of not having control.  The frustration of completely giving up control and hoping for the best.

It was something, but I didn't let it win.  I felt these awful emotions for a few minutes, but fought them off.  I reminded myself how far I've come the past year.  How strong I've gotten on my bike over the past few months.  How I've refused to accept the fact that because I am ill I have to show it.  Most people that meet me and don't know me will never know I am ill.  I don't display my sickness on my chest like a scarlet letter.  And so, I've won.  Yet again.  Little victories.  But the struggle isn't over.  It will never be over until I no longer have to get treatments and can come off of the toxic meds.

But I'm not alone.  Everybody comes to the ambulatory infusion center for the exact same reason.  Whether it be cancer or chronic illness, we all have one thing in common.  The hope that our individual treatments, as toxic as it may be, will help us get better and allow us to return to normal life.  

I will never forget the first time I came for my infusion a little over a year ago.  I’m not sure what I was expecting, but I wasn’t expecting what I saw.  I was introduced to a completely different world.  The world of people, doing what they can, to merely stay alive.  It’s one thing to hear that cancer patients need chemo to stay alive, but  it’s a completely different story to sit side by side them and see first hand the emotional roller coaster they and their families go through when they are getting their treatment.  It's also not very comforting to sit next to other Crohn's patients, in the same situation as you, just trying to get by.  It's not comforting because I don't like to be reminded of how common this virtually unspoken disease is.  Crohn's patients suffer in silence because they are embarrassed to tell people that they, as adults, can no longer control their bowels when flaring.

It was that day that I saw life in a completely different light.  I saw what was truly important in life.  An epiphany if you will.  I realized that for years I had taken my health for granted, and at the same time was thankful that I have a chronic illness and not an advanced form of cancer.  I got angry at healthy people who still take their health for granted and don't know how good they've got it.  I was scared, speechless, shocked, and was overcome by sadness.  This was the "other" part of life that most don't speak about.  The part of life that, when it hits you and takes your health hostage, forces you to look back and kick yourself in the ass for not taking that vacation because you thought you didn't have enough time, not spending more time with your family, for spending too much time at work, for not taking that risk in fear of failing, etc etc

As I walked through the bare white hallway and peeked in each room I saw faces of fright, defeat, optimism, strength, and hope.  Each face had a different story, a different personal struggle, a different illness they were trying to kick.   

When I got to my room and sat in my chair I looked to the left and saw a mother getting chemo.  This was her life.  This was real life.  Getting healthy had to be my mission.  Getting healthy mattered.  For all of us.  All of us making ourselves sick with our toxic treatments so we can ultimately get better.  Sacrificing for the greater good.  We ever so desperately want back the healthy life we once took for granted.

It was at that moment that I realized that the only way I was going to survive and beat this beast of a disease was by digging down into the deep depths of my soul and seeing me for who I was.  I realized that I had to take my life back, in one way or another, so I can live long and healthy...

And here I am, a little over a year later, all bruised up with nine needle marks and four blown veins in both arms.  Though today was incredibly painful, sad, and emotionally draining, I still refuse to give up.  I've come a long way, and have a long way to go.