The Back Story

Shay 11yrs - jazz

Long blond hair and eyes that hit every note in the blue spectrum, at only eleven, she was destined for success. She had the looks and the brains and a secret. This secret, she hid for months. Not a soul, not her best friend, not even her parents knew. Then her 12th birthday party came. She had looked forward to it since Christmas because eating out at The Outback was what a young lady does and it was her mom’s favorite restaurant too so what could go wrong?

Everything.

When that evening in January came and all her family and friends and her mom’s friends were all gathered around to celebrate, her spirit was crushed. After months of hiding, people had taken notice. Her small, underweight appearance was finally brought to the forefront of everyone’s mind. Her dear mother, presumably not thinking, all but announced to her guests that she was “anorexic”. Aside from the fact, that her private conversation had obviously gotten everyone’s attention, her mother didn’t skip a beat and continued on ignoring the birthday girl until her conversation had ended.

Stunned in horror at the words that had been laid before her, she sat there staring into space and away from her family and friends. Through tear filled eyes she could see a young woman crouch down beside her. Shire. A beautiful, 20-something brunette that felt for the little girl. Shire asked for the birthday girl’s name and after revealing it, Shire told Shay, “It doesn’t matter what people say to you, you know who you are on the inside. People used to call me all kinds of names growing up. Ya know Worcestershire sauce. That’s me. And I embrace it now cause it’s only words. They can’t hurt you.”

In the following years, the doctors finally diagnosed Shay with Ulcerative Colitis. A few years after that, Crohn’s Disease was the final verdict. Either way, the little girl had no idea what was in store for her.

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Let’s fast forward many, many years. It has been a very long and trying road but here I sit writing the highlights of my unhealthy life. As mentioned before, I got sick when I was 11, misdiagnosed at 14, correctly diagnosed at 16 and then added a few more chronic diseases to the list along the way. PSC (Primary Sclerosing Cholangitis) also came when I was 16.

Then on my 28th birthday, I got the “are you sitting down” phone call from my gastro. Not only did he find that I’ve had Celiac disease for years but that I had stage II Colon Cancer as well and surgery needed to be scheduled immediately. Once again, happy birthday to me.

Two months later, after getting as many of my ducks in a row as possible with a husband and two sons, the doctors took out all of my large intestine. I was somewhat lucky in the fact that they were able to reconnect my small intestine to my rectum (J-pouch) and I am still bag free. However, I often wonder if I made the right decision in the surgery. I trusted my doctors when they said there was no other option but removal.

2 months after surgery

2 months after surgery

Several years later, I’m still struggling with this new body of mine. I have good days and bad days and really bad days but I’m still here. I know that I’m fortunate to have survived all that my body has thrown at me but even after all this time I find it hard to express my story.

“I am a cancer survivor” just isn’t one of my sayings. The people I care most about have repeatedly told me that I should be proud of the fact that I kicked cancer’s ass and I should tell anyone, who’ll listen, my story. But I can’t. I didn’t have to go through months of chemo or any treatments for that matter.  Logically, I know that doesn’t make me any less of a survivor or that I’ve suffered any less, but I digress.

So where to go from here? I suppose I learn to embrace all my “C’s”, as I so affectionately call them, and continue to take one day at a time, music blaring.

Music of all facets is what has helped me get through all these years. No matter my mood, I can find a song to help me ease whatever pain that moment brings.  I can fully attest to the power music holds. Not the Crohn’s, PSC, Celiac or Cancer has been able to convince me otherwise.

I write this in the hopes that there is someone else out there that may feel the same way I do or has had the same experiences. And to inspire those that are beginning their journey down the yellow brick road that is “tummy troubles.” The emerald city is within your reach, you just have to have the spirit and good music to get you there.

b&w smoke

♪ Listening to 30 Seconds to Mars ♪

Comments
12 Responses to “The Back Story”
  1. Dana Bennett says:

    Shay, how brave and spunky you are. I love that you love music and that it has shown you its power. I didn’t have the long history of physical illnesses you have, but I did have an insensitive, loud mother who could talk about me as if I were invisible. And I was diagnosed with PSC right when my life was starting to have meaning and focus…which I had to put to one side and allow them to transform to something I could actually handle with the energy-sucking fatigue I got from PSC. It’s a journey, that’s for sure. My favorite song right now? I Wanna Have Some Fun (before I die) by Sheryl Crow. Yeah.

    • asizCreatives says:

      thank you for the kind words!
      i am sorry that life hasn’t gone the way you would have liked. i know all to well what that’s like 😉
      but as corny as it sounds, what doesn’t kill us, makes us stronger.
      then again, i much prefer a lyric from one of my favorite songs then that used up line…
      “rise up above it” short, sweet and to the point!
      i tell myself every morning that i will rise up above whatever is thrown at me that day.
      ok nuff of all that. lol
      like your song choice! mine change with the wind so please come back and check out my new posts! 😀

  2. Dana Bennett says:

    I will be back! I like the “rise up above it”. That really sums it up! If you don’t, you’re missing out on so much. 🙂

  3. Jessie says:

    I came across this trying to learn about PSC. I just got diagnosed with it today. Not only that but 9 months ago I was diagnosed with Liver Cirrhosis. I had just turned 15 when I found out I had Liver Cirrhosis and Portal Hypertension. I’ve been in & out of the hospital. And I’ll have to have a liver transplant in the next few years. It really helps knowing other people are going through similar things.

    • asizCreatives says:

      I am so sorry to hear that. I was young too, as you know, when my body decided it didn’t like me anymore 😉 It sucks, no doubt about it but you just have to take it 1 day at a time. I’m sorry that I don’t have a lot of info up on PSC yet. It’s coming. Promise! Til then, I hope that you look around at my other posts and see that I have plenty of bad, down and out days so you’re not alone! Stay strong!
      One last thing, I know all too well how alone I always felt back then so, if you ever just need someone to talk to, I’m available. Just let me know. I got ya email.

  4. Rod Edwards says:

    Asiz, just joined this group. I was diagnosed in 1998 with PSC. After some brief itching and jaundice it went in remission all the way to Dec., 2011. Then everything has been stirred. I live in Okl. City but am being seen at Mayo also. Nausea and tiredness entered my life, a dormant ulc. colitis be came active in Summer, 2012 with pre-cancer signs for the first time. Within the last month, I am afraid my liver cirrohsis has escalated because of quantities of fluid retention in my abdomen(only had it done once but 7 lbs removed this week). I go to Mayo for tests on the 20th of this month.
    When you describe tiredness, how severe is it? I still work daily, at 61, but it is tough sometimes. Do you experience nausea and have you been given anything?
    I like your music discussion! Rod Edwards

    • asizCreatives says:

      I am so sorry to hear you’ve had a rough couple of years. I’ll keep you in my thoughts.
      As far as my tiredness, it varies. There are some days when I don’t leave the bed, some days when i feel like I can conquer the world (I obviously don’t try because I’ve learned my lesson on that the hard way), and everywhere in between. I stopped working a regular job in 2009 because of my physical limitations. I’d say on average, I can get 2 or 3 simple household chores done a day without becoming too worn out.
      Whenever, I’m having a Crohn’s flare or my liver has contracted (yet another) infection, my nausea/vomiting can be overwhelming. I’m usually given Zofran or Phenergan. They both help to ease the nausea equally. I’ve also found that sucking on hard candies, like butterscotch or Jolly Ranchers, will kind of calm the nausea.
      I hope that some of that has helped. Thanks for taking the time to look around here! If ya ever need me again, I’m always here! 🙂

  5. I have only gotten to read your background so far, and I have to tell you that I can absolutely relate to your struggles, but most of all, I also believe in the POWER of MUIC and other PERFORMING AND VISUAL ARTS! For me, music and singing always help when I am down. I wanted to thank you so much for the the nomination for the Very Inspiring Blogger Award! As you had mentioned in the one you received, it will help rejuvenate me to pull up the computer and write, which as you know is hard when you are sick or down. Again, thank you so much! I look forward to reading the rest of your blog!

  6. I’ve been following your blog for a bit. I hope you don’t mind, but I’ve nominated you for an award: http://howlingmadcat.wordpress.com/2013/05/05/the-versatile-blogger-award/. Thanks for sharing your struggles! Ellie

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