About Us

This blog is changing, just as our family is changing. It was originally started to keep in touch with family and friends far away, but when you face a life altering disease EVERY aspect of your life is changed and in some way effected by it. Now I need a place to vent, to share, to help people understand the struggles that we face as a family with 2 children that are struggling with the Disease Eosinophilic Esophogitis, and with all of us having multiple food allergies. So this blog is becoming my journal so to say, an outlet for me to express my frustrations, share my joys, and put all information into one place for those that want to know. Why share something so personal, and often too hard to bare? Well...so much of this disease is silent. We work so hard to help our kids lead a normal life and no one sees the struggles faced daily, and I think it is important to let people know and understand.

What is Eosinophilc Esophigitis?

What is Eosinophilic Esophogitis? Also known as EE, or Eos, or EoE.

First let's start off by saying, there is NO CURE! There is NO FDA approved treatment. And often the only form of successful treatment are large doses of steroids and/or elimination of "trigger" foods, which sometimes as in the case of our 2 boys is an elimination of ALL foods. Forcing them to be on an Elemental Formula ONLY diet and water.

Second let's start with the layman's definition as I know how to explain it, and then I will add links with better medically explained and more in depth definitions. Eosinophils are a form of white blood cell, and in persons with this disorder these eosinophils attack food as if they are a parasite, causing damage to nearby tissue in any part of the digestive tract (in our case the Esophogus). This causes reflux that often does not respond well to reflux meds, vomiting, pain, aversions to food, rashes, diahrea, constipation, and many more symptoms like leg and joint pain, headaches. All of which these symptoms lead to more and more problems from which many you will learn about by reading my posts.

One of the bests places for accurate up to date info go to: Apfed, http://apfed.org/drupal/drupal/index.php

And of course this blog reads most current posts first, so I'll do my best to label important posts to help you catch/keep up.

Monday, October 24, 2011

Not only have you not walked a mile in my shoes, but you haven't even looked down to notice what type of shoes they are!

(Once again, those seeing this on Uriah's facebook, this is written by Kaelynn for her blog)

Maybe I'm crazy but I trully don't believe people have the right to judge me. We have had a terrible month and it's not getting better. 
And when I need to be sitting here pondering and striving hard to have the spirit with me so I can know the right decisions to make as to if my son needs a feeding tube, and when is the right time. And also what are the right accomodations to fight for for my daughter's safetey in school, and I could go on with this list of the questions we are desperately trying to receive answers to, I am instead sitting here and the only thing going through my mind are the comments that have been made and the obvious judgment people have of me.

And the worse part is that these people judging me have never ONCE talked to me about my life, or the real situation. They take no interest in the day to day, or what is trully going on, yet they feel the need to judge me for decisions I've made without knowing the how, why, when, where, and any other pertinent information. I'm sorry but you don't have the right to judge me.
Not only have you not walked a mile in my shoes, but you haven't even looked down to notice what type of shoes they are!

I just wish people would realize that their opinions can be hurtful, and if not being sought after, should be left unsaid...I need to let this go, I need to clear my mind and get rid of the anger and pain and frustration and hurt and contention so that I can  invite the spirit back into my heart and get back to more pressing important matters. So while I want to dwell on this and resolve it, I can't. I have to let it go. I have to forgive and move forward so that my children can have my full attention. I've already wasted a day of my precious time on this stupidity, and I can't waste any more.

...but I will add this, just because I forgive and move forward, doesn't mean I haven't learned from this experience, and things and relationships will never be the same.

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