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.

Wednesday, January 6, 2010

Sorry, Here's some Venting!

Uriah was studying his scriptures last night while I was laying in bed feeling sick and pregnant like I do every day. He came across this scripture; Moses 4: 22 "Unto the woman, I, the Lord God, said: I will greatly multiply thy sorrow and thy conception. In sorrow (Footnote: Pain) thou shalt bring forth children, and thy desire shall be to thy husband, and he shall rule over thee."
He said it should help me feel happier about being sick all the time because it is in the scriptures that women will have pain through pregnancy.

I guess I am not as spiritual as he is because if it said it in the scriptures that women should be miserable, it just makes me more annoyed at those women who are glowing and feel great throughout their whole pregnancy. It didn't make me happier at all! Maybe I should just be more loving and except my fate. We'll see if I can get that spiritual! Hee Hee, maybe some day after I am done being pregnant. :)

I love and miss you all! Forgive my pregnancy venting please!

2 comments:

Jim, Becky, and Kids said...

You are NOT alone! I'm miserable like you for several months at the beginning every time too. Admittedly I have some good feeling days in the middle, but the end is pretty awful as well. Hang in there!

Kaelynn said...

I guess I am just more annoyed that my house is a terrible mess, and my husband has to do so much to help me just because I am so sick. So I feel like the worst mother/houswife, wife in the world! I just want to feel well enough to function again. Hopefully it will come sooner than later!

Thanks again for letting me vent.