Re: lying and full of misconception

Webmaster, I have a few thinngs to comment on your comments that you made to this poor person that is suffering from Lupus. I am just now becoming more knowlegable on the subject of Lupus, but the things that I do know to be true is that Lupus goes into remission for some and may stay in remission for a long time, which is a good thing, but for others it doesn't and they have to deal with all the many faces that this disease has everyday of there life. So are children, others are middle age, and others are older. But either way they all have to go thru there own set of syptoms and they vary from patient to patient, and for some they only get the mild case, while others get the severe case. So I am not why even this happens, and as of today times 2004 there is no evidence that shows us why, all I think that we can do that work in the medical communtiy is try to find answers and even more work very hard at finding a cure. I have 2 children with different types of auto immune diseases, which are very alike but different. The part that is the same is that their immune system is attcking there bodies. One has had it since he was 3 and the other just was dx'd, which we have been thru allot with her due to her age of 11. I don't think that as far as anyone can say anyways that there is any one thing that any one has to do and did in their life to become ill, and you know life just happens...... My children are the best part of me, and all I know is that both of them have a life of long hard trials ahead of them. I have been there where I ask why, and still do, but you know this is all a greater power, it is bigger than you or I, and oneday we will all get are questions answered. For them though they are innocent, and take on the burden that life has given them. As far as the comments to a cure for Lupus, well since Lupus is a disease of 1001 faces, and can effect so many parts of the body, it will be hard to get a cure. We just found out that our daughter has SLE, and 3 weeks prior found out that she has cardiomyopathy in the heart. She is angry, she is hurt by the fact that her doctor let her down, and she is scared to death. People come to these forums to have a shoulder to lean on, and to have hope thru others that are going thru what you are, your comments to this person are not comments of hope, they are critisism. This person is in pain, and maybe just feels angry, and maybe they have no one to hold them when time is tuff, and Lupus can be. I worked all night in PCU at the hospital and walked down to the lab to pick up my daughters results, I was in shock when I got them. I cried, and I was angry, and I have been researching, and now I am here. I really just more than anything need to be able to get my feelings out about her pain, and her anger, and her being so hard headed. but it saddened me to see what you had wrote to this person, I thought that maybe here I would find comfort, and friends to share things with but now I am more discouraged than ever before. I hope that you will view or take a second look at what you wrote here, and how it came across to this individual. Maybe they are angry, but don't you think they have that right? They have something that is litterally destroying them inside and out. I believe that everything we say to people we are accountable for in the end, and sometimes you just need to read deeper than there words, of anger as you put it. They needed someone to talk to. Maybe you can turn it around, you can always try. Lyn
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