Kate was diagnosed with Erdheim-Chester Syndrome about four years ago. One of the first things we did was look to Google to see what this meant. Not the thing to do as we found that the disease had a survival rate of ), and a life expectancy of 1 1/2 years. Obviously something was wrong as she is still here and doing as well as can be expected. We just discovered that her variation is only had by 5% of those with the condition. So Google does much to confuse those who have not the expertise to know of what they are looking at. Now that said, my heart goes out to you as I know what pain is, Kate takes medicine for it and it works somewhat. Your ability to just function is a testiment to your stamina and good will. I read your posts and wonder how you do it, going to work, taking the crap from a bunch of people who basically treat you as a piece of meat to yell at. You are a great person and you are doing more than expected of a (normal) person. Good will to you.