SRS Lupus

Discussion in 'On Topic' started by Red Sadie, Jun 5, 2009.

  1. Red Sadie

    Red Sadie New Member

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    Hi,

    I must start by saying that this is the first time I have ever posted. My husband found this site and signed me up, thinking I could find some help, or at least some peace. You see, we have a daughter, 27 that was diagnosed with systemic Lupus in 2003. Its pretty much taken over her life. If you don't know about lupus, it is an autoimmune disease. If interested look it up, its quite a horrible disease, chronic, and at this time no cure. As a result from all the different medications they have tried on her she has developed epilepsy.
    I tell you this not to feel sorry for us, just that I don't know how to help her.
    She is angry!!! I guess I'm angry for her. Oh and by the way she also has a serious case of OCD. This makes it hard for her to get anything done, even make her doctor appointments on time. Pleading, begging and getting angry does no good, just makes everything worse. What I'm doing now I guess is venting. She has always been so talented and smart. An actor, dancer, writer, artist, all wrapped up in a spitfire of a girl that let no one or nothing stand in her way. Now that girl seems to be lost. I don't know how to help find her. Maybe you know someone like her, did they find help?
     
  2. 7960

    7960 New Member

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    this is the wrong place for advice.

    you should find an online forum specific for lupus, or at least autoimmune diseases.
     
  3. METALLlC BLUE

    METALLlC BLUE New Member

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    PM me or send me an AIM at MB58SC
     
  4. Crawling Dead

    Crawling Dead Gz-TeRRoR

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  5. Crawling Dead

    Crawling Dead Gz-TeRRoR

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    I think the best we can do is give you a place to vent your feelings, let you know that there are people out there who care, and are sorry to hear you and your family are going through such a hard time.
     
  6. Red Sadie

    Red Sadie New Member

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    Thanks for posting back, however I was just looking for anyone out there living with some of these problems. Perhaps you are right, I should be on a site devoted to Lupus. Sometimes, however, you can get a clearer view from someone on the outside. For the most part I am just venting. I see almost daily the destructive things my daughter will do and I can do nothing. I cannot express how bright and talented she is. Maybe that's part of the problem, she knows what was taken from her. She can't seem to accept it, move on and get back into life. She goes nowhere and does nothing much. I've been no great help. I've taken care of her, enabled her, made her feel as though she is incapable. I haven't done this on purpose, fear is my enemy. I have to learn to step back no matter what I think and feel and just let her go , no easy task after all that we've been through together. Maybe I won't get the answers I'm seeking. I know what I need to do, finding and understanding the correct way is what I am looking for. So thanks for your time I've held this in for so very long feels kind of good to let it out.
     
  7. METALLlC BLUE

    METALLlC BLUE New Member

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    Has the treatment that your daughter was given worked at all? Or has she gotten worse? How many doctors had she seen? Do you have AOL Instant Messenger, Yahoo IM, or MSN IM?
     

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