This is really a great site. :)

[Guest guest]

Wow I woke up in the middle of the night and thought I would check out

. I forget what I wrote earlier after reading for hours. I think

discussions are always good and no one should leave.

I think we are all exhausted many working for years on this issue. Welcome to

all the new people. I remember how scary it was when I never heard of this

illness.

Really everyone is very valuable here.

I was walking into the hospital with my daughter and her boyfriend of 7 years

and I needed something from the store since I have not driven a car since around

9/11. My husband was still unconsious from his heart surgery, and my dauhter's

boyfriend said to me that I should take what I could get because I have not

worked for all these years.

I coulnd't believe he said such a hurtful thing especially when I was so upset.

I have been so kind to him all these years. One time he also said he thought my

illness was in my head.

This is what our work is for all those that are uneducated and cause pain and

unnecessary suffering. I had to be the adult. I did tell him he should educate

himself and that I have been trying to save lives all these years and educate

people.

We are treated different fromm cancer patients or other illnesses and it is not

right. I do a blog so that one day my family can read my thoughts and all the

info I have gathered to educate others. No one in my family has read anything I

have written which is sad.

I hope and pray that it isn't too long before our work is appreciated and in

mainstream media. Hang in there, I am trying...