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.

Thursday, August 25, 2011

Let's Face It

So let's face it...my life is depressing. I know that. I live it everyday. I have many days where I can't keep myself from crying because of all of it. I vent too much, yet I keep too much still hidden and it's making me crazy. I see what I tell people and I think, "No wonder people don't want to talk to me, or keep in touch." but then the other side of me thinks, "Well, better to know now who cares and who doesn't." This has been an eye opener for me to see the true colors of people, and it is always surprising.

The speakers in church last Sunday were talking about counting your blessings. (At least I think that's what they were talking about. I was having a hard time listening because of my kids) I know it's what I need to do right now, but I am struggling to appreciate the blessings through all the trials. I know they are there, I can start listing them off and have a hard time stopping. But for every blessing that I feel and know, there is another trial knocking me over. So how do I appreciate all the blessings when I'm drownding in trials?

I began this journy promising myself that I would not teach my children to hate this disease. That may be an odd thing to say, but I've met people online and all they could talk about was how much they HATE Eos. And I decided that I would never be that way. I wanted my children to have a positive outlook on life, to see all the blessings they have...yet I find myself everyday struggling not to scream out loud, "I HATE THIS DISEASE!" I hate it, I started hating it the moment I had to lay on the floor for hours one day squirting little sips of this NASTY formula into Abinadi's mouth every couple of minutes so that he wouldn't end up in the hospital again. I HATE it everytime I look into my boys' eyes and see them pining over food. I HATE it when I realize my house is a mess because I can't handle the stress of it all, and all I can think is, "well if my kids were normal, I would have it together." And I can go on and on with multiple times every day where all I feel is HATE towards this stupid disease!

It is SO HARD to appreciate the blessings when all you feel is hate. I am trying hard to keep my kids from feeling that hate. But I know they do. I can see it in their eyes when problems arise. And all I can do is tell them, "I know how you feel. I hate it too. But we gotta keep goin' and we just have to deal." So I guess I'm dealing. It may not seem like it. And it surely tonight doesn't feel like it, but letting it all out, is helping me deal. Admitting to myself my true feelings will hopefully help me move past them, and appreciate the blessings we have.

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