Monday, March 7, 2011

Celiac - the bain of my existence

I know that is a strong title - Bain of my existence - however this is exactly how I feel when I have a Celiac attack!
I am not sure if it’s because I am so cautious in what I eat and how my food is prepared that causes the heightened frustration when I have an attack or if I would feel the same exact way no matter how much I cared about staying well.  I just know that when I have an attack it is like Hercules’ Achilles heel - it drops me in an instant.
I am very particular in where I go to eat out (when I do eat out - as it’s safer to just fix it myself) and make sure the staff is highly trained.  One of my favorite places is PF Chang’s and I rank them as #1 in my book and have never worried about going there.  Well that is about to change folks!  First let me put in my disclaimer that I still think they are one of the best trained restaurants in Celiac and do not lay blame on the chain at all.  In this case I think I caught a waiter on an off day - a day where maybe he couldn’t look outside himself to realize the pain and suffering he was about to cause me.
I ordered GF lettuce wraps - my favorite- and explained I needed Gluten Free everything.  I saw the soy sauce come out separate in the little red dish so I could quickly identify it and then made my first mistake - when he brought the lettuce wraps I forgot to check the plate.  See PF Chang’s does a wonderful job of making sure your gluten free food is on a different plate so that you can tell.  Anyhow I proceeded to share this yummy dish with a friend while we talked.  Then another friend joined us and the waiter came by and said to her “Do you have any food allergies - oh never mind I see you don’t as you are eating that” and pointed to MY supposed gluten free lettuce wraps.  Now something triggered in my head to stop and figure this out - but we were in the middle of talking so I let it slide and didn’t pay the attention to it I should have.
We continued to talk and eat our main course - which I DID remember to check the plate on (and it was fine).  However as I was eating I started to feel ill.  Not wanting to make a big deal of it I wrapped up our luncheon with a smile.  As I walked out I thought to myself “Oh no!”.  As I drove home and had to stop several times I thought “Oh come on - not this!”. When I got home and not only was sick as a dog, but drained, freezing and extremely exhausted I knew what had happened.  I had been cross contaminated and those waiter’s words came back to me loud and clear.  I should have asked then - not that it would have mattered I had already eaten it - but maybe I could have helped teach him how serious this mistake was.
Now I know this sounds dramatic to say this is the bain of my existence - however here’s what happens next.  I spend all night sick, drained and feel like death has come knocking on my door.  Then I spend a horrible night of not sleeping because the pain in my stomach hurts so bad.  Then I wake up in the morning - starving as I’ve just spent at least the last 12 hours ill, purging everything I own and not eating anything to replenish it.  However there is a catch - I can’t eat - trust me I tried and it starts the cycle all over again!  It takes days for my stomach to heal enough to put real food on it - so for the next few days I will be eating broth and mashed potatoes (bland by the way).  All the while I will experience hunger like I haven’t eaten in weeks but no way to satisfy it (it’s like my body is trying to store up for all that it has lost).  I will lose weight rapidly (I am already down 6 lbs in 2 days) and feel like someone has zapped all energy from my body.  It is difficult to follow conversations or even think and I’ve watched every stupid sitcom on tv I can stand. I will spend days recouping from this and not gain a thing from the experience! My family will suffer with worry and being tied to the house due to my disease. None of us are having any fun at this point!
This disease is not a food allergy - it’s a serious DISEASE people.  Not only do I suffer from the cross contamination but now I have reset my “no sick days” back to zero.  The goal is five years of not being sick - that is how you fully heal and lower my risk of some serious diseases (like intestinal cancer).  On top of all of this - my immune system goes on vacation when I get an attack - leaving me open to being sick - which I am today.  I have some cold/flu thing going on and it’s turning into an infection. Of course my body is busy fighting the celiac attack and has no extra energy for this new development.
Celiac and gluten free are becoming common words - but what isn’t common knowledge is this is not just some food allergy that gives you hives. I can’t even count how many people say “Oh you have celiac - that’s an allergy right” or something similar to this.  This is a serious autoimmune disease that does some serious damage to celiac patients.  So for those of you who deal in food and offer gluten free - please remember your mistakes can cause us much more than an upset stomach.  For those of you who are celiacs - hang in there - be vigilant and know that you are not alone in this!
Me - well I will keep trudging forward and be more cautious in my decisions to eat out and have learned to never let my guard down - no matter how trained they are.  Lesson learned!

Saturday, December 18, 2010

Simple Wins

I haven’t written in a while.  Not out of laziness or busyness or any of those other excuse we use on a daily basis. I haven’t written out of anger.  Every time I sat down to write in my blog about my health, my heart, my soul, my spirit - I became angry.  So angry that only venom came to my mind.  Only words that were made to be shouted not written would come out of my fingers. I woke up angry, I worked angry, I ate angry and even slept angry.

I was angry at the cards I have been dealt.  At the health I have been handed.  Angry that no matter how hard I tried I kept turning into this weak and pitiful person who needed help!  I just wanted to scream and cry with every breath I had!

So what has changed you ask?  It is simple.  A state of mind.  My health is not any better - in fact I think some days it’s gotten worse.  My spiritual journey is in a holding pattern and my heart is the same.  What changed was my mind.  I woke up one morning and decided I couldn’t - no WOULDN’T live this way any longer.  Why do you want to live a life of anger? I took a deep breath and as I breathed out I decided the pity party was over!  No more anger, no more crying, no more feeling sorry for myself. Now was a time to live, to fight and to enjoy life!

My husband actually started me down this road about a week before.  He is one of those people who will love you deeply while always being honest and upfront with you.  When we discussed having leadership pray over me at our church he asked what I wanted.  I told him I was tired of praying - tired of wanting - and that I just didn’t know what to pray for anymore. He looked me straight in the eyes and instead of doing what every one else in my life does (which is love me through it - hug me and tell me what I want to hear) he said exactly what I NEEDED to hear while loving me through it.  “It’s like the guy in the Bible that was by the healing waters but complaining to Jesus saying he tried to get in but others got there first so he couldn’t be healed. Jesus said to him - GET UP!  GET UP AND BE HEALED!.”  “Kim - you have to want to be healed - you have to get up!”.

Wow - that hurt.  But again I reiterate that is exactly why I love my husband - he loves me deeply even when it comes to telling me the hard stuff I do not want to hear! However, be that as it may, he was right.  I was sitting on the sidelines whining about how I couldn’t get better but I wasn’t doing anything.
That brings me back to that morning, that deep breath and that decision to break the pity party up and start living again!  Since then I’d love to tell you I am healed and everything is perfect. Unfortunately if I did I would be lying.  My health has not gotten any better, in fact today I have no voice and have been sick for days (above and beyond my normal stuff)!  Spiritually I am still on hold and well not much has changed.

No I correct that - I have had small wins since then and I think I have been all along - it’s just now I allow myself to see them.  I have made it to church a few times after months of not going at all.  My doctor was finally able to get the specialist to agree to see me! Most of all, I am now able to look at my family and see love and feel grateful for them in my life instead of worrying about me and my health destroying it!

The moral is simple - life will hand you crap - but if you put on a smile and truly allow yourself to enjoy life - you will be able to push the crap aside and enjoy the little moments that matter the most.  So your health isn’t great, so your mind doesn’t work the way it should, so you aren’t “good enough” to enter those pearly gates in heaven - that is not what matters.  What matters is you put your feet on the floor each and every day - you take one moment at a time and you allow yourself to bask in the little wins of those moments.  The rest - well the rest is like loose change - stick it in a jar and forget about it!

Here’s to simple wins!

Friday, October 22, 2010

May be moving to new blog site

If you are following me click the title above and go to my new site.  I will keep putting them on here when Ihave time but eventually will be moving permanently to the new site!

Thanks for your support!