One Year

Exactly ONE YEAR ago today, my life changed drastically.  It's been an entire 365 days since my colectomy and in some ways it seems like it's been a long time coming and in other ways it seems like just yesterday.  Either way, this past year has been full of ups, downs, highs and lows as I learned to live and love my "new life".  I've learned to live it but I am definitely still working on loving it.  I'm not there yet and honestly I'm not sure I ever will be.

In case you're new to my blog or you don't remember the details as clearly as I do, you can read more about what happened a year ago HERE.  

I just re-read it myself a few minutes ago and it brought back a whole host of emotions for me.  I am so glad those first few days, weeks and even months of learning to live again are behind me.  I shutter sometimes when I remember what a dark place I found myself in last summer.  I truly mourned the loss of my old life and I spent many tear-filled days laying in my bed unable to make myself get up and feeling like I had made the biggest mistake of my life.  I still feel that way sometimes and I still miss my old life but I try to make the best of it.  A lot of times, though, it gets the best of me.  

I am thankful that by having this drastic surgery, I no longer live in daily pain, a prisoner to my own home and more specifically my own bathroom.  Crohn's disease is absolutely awful.  AWFUL.  It robbed me of so much for so many years and I am thankful that I no longer have to live like that.  This alone is something to be extremely grateful for.  I've said many times that after living in chronic pain for so long, you almost forget what it's like to actually feel GOOD.  I had forgotten what that was like and I got a small taste of it right after my surgery.  I had about three good months where I felt great physically (not emotionally) but quickly I was robbed of that yet again when my liver began to fail this past Fall.  That small taste of the good life was such a welcomed relief from the pain I had been living in for over 7 years.  I finally had the energy to go and do all of the things I wanted to do without pain, fatigue and illness dragging me down.  Remembering how good that felt makes me all the more anxious to get this transplant behind me so that I can once again (and hopefully once and for all!) taste that freedom again.  I long for the days of no longer being the "sick girl".  What a tease it was to only have that freedom for a few months.  

On a positive note, if it hadn't been for my surgery last summer I would have missed out on meeting some absolutely wonderful people who are now among my closest of friends.  I found myself doing something I never imagined doing before when I joined a support group.  It's called Girls with Guts and through this group of amazing girls and women I have been afforded the opportunity to meet some of the most wonderfully inspiring ladies who are living their lives beautifully despite the hand they've been dealt.  One of them is even expecting her first baby this fall and I have been so encouraged as I've watched her go through the process of pregnancy just like any other woman would, despite the fact that she has an ileostomy.  This has been so encouraging for me, as one of the first questions I asked my surgeon prior to my procedure was regarding future children.  Not only is she expecting a healthy baby boy very soon, but she is loud, proud and thankful for her ostomy, which she calls her GIFT  I hope to someday, somehow get into the mindset that she has where I am no longer ashamed or inhibited by mine.  Through Girls with Guts I have also felt the sting of loss, as my sweet friend Aimee passed away this past January due to complications with her Crohn's disease.  Aimee was only 19, a mere baby.  Not only did she suffer from Crohn's but she also had PSC which is the same rare liver condition that I have.  Aimee was bright and beautiful and good.  In the loss of Aimee I was reminded yet again of the frailty of this life and that none of us are promised tomorrow.  Aimee is sorely missed by everyone in our group but I am so thankful that I've been able to stay in touch with her Mom and her Aunt through Facebook.  They have both been such an encouragement to me.  Again, I never would have met Aimee or her sweet family had it not been for this group which ultimately was a result of my surgery.

A few of my Girls with Guts friends at our meeting last December.  Aimee is on the far left.  This was the last time we saw her.

I have met so many amazing people and made some life long friendships that I never would've had the opportunity to make had it not been for my surgery.  So, in some ways I am grateful for it.

On this first anniversary of "the day my life changed forever", I am neither regretful or thankful for my decision to have it done.  I am just kind of taking it one day at a time......still.  They tell me it's a process to getting to the point of truly accepting it.  I feel like I've accepted it, I just wish I felt more freedom than I do.  I wish I felt prettier than I do.  I wish I felt more confident than I do.  I wish it wasn't on my mind 24/7.  I wish it didn't define who I am, at least in my own mind.

When I look back at these pictures I can't help but cringe as I remember those first few pain-filled, emotional days as I came to terms with my new way of life.  However, I also can't help but smile when I remember the tremendous outpouring of love and support that I felt from friends, family and even strangers alike.  I have never felt so encouraged as I did in those days leading up to and following my surgery. 

This is the last picture I will ever have of me with my body in its natural state, the way God so carefully and perfectly knit me together

First picture post-op as I came out of surgery, one vital organ less than I was just a few hours prior

Showered with love and support just minutes after waking up from surgery

 It was also a sweet time of bonding as I learned to depend on Matthew for EVERYTHING.  He slept in a hospital chair every single night during my 10-ish day hospital stay and never left my side from the moment I was admitted to the moment my recovery was complete.  It was truly a blessing to have that time of dependency because it really refreshed our marriage and brought us closer than ever.  I remember crying when he had to go back to work once I returned home to Jackson.  Even though my Mom was there to take care of me, I felt like Matthew was the only one who really knew how to take care of me, since he was by my side every moment of every day.  In a weird sort of twisted way, I am actually looking forward to that same time of dependency when I have my transplant, only on a much larger scale.  Sometimes it takes us being stripped of everything (even our health) and relying on someone else for our most basic needs to make us truly appreciate the gifts we have been given.  Which, in my case is a wonderful, caring, supportive, encouraging husband.  When he said "in sickness and in health" he truly meant it.

This is one of my all time favorite pictures of me and Matthew and by far my favorite picture from my time in the hospital.  I can't tell you how many laps he walked with me around that nurse's station, helping me drag my IV pole and cheering me on all the way.  Learning to walk again was a huge part of my recovery and Matthew made sure I gave it my all and never allowed me to by lazy, that's for sure!

There was also some humor along the way.  Sometimes you have to laugh just to keep from crying!  It became a joke to see just how many medications they could hang on my IV pole and how many lines I could possibly have coming out of my body.  I called it my Christmas tree.....

There were also some good memories along the way.  I had some phenomenal nurses and doctors taking excellent care of me and there were days that I actually felt GOOD.  And though they were few and far between, there were even moments in those first few days that I felt confident in my decision to have the surgery.  I specifically remember this being one of those days......

So to wrap my feelings up on this first anniversary I will quote fellow blogger from  The Stolen Colon  and say "I have decided that my goal is not to be 100% OK with my ostomy 100% of the time, since I honestly don’t think it’s possible. I think it’s more about an understanding that we have to come to. Sort of a deal between my ostomy and myself. We have agreed to coexist."

We are frenemies.

Happy first bagiversary to me!