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Thread: Hello Everyone

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    Default Hello Everyone

    Hello everyone. I'm brand new to all this and am very glad i found this board.
    From my first initial Gp visit to right now it took less then three weeks for my doctors to tell me i have Lupus. My family and i are still in disbelief and it all seems so very surreal. I have been reading the posts here for the last few days and think it is wonderful to have a site to talk about all this.

    My poor dh crys when i talk about it. we really havn't been told much about it so i have gotten most of my info on line. Sad isn't it? I'm really hoping you good folks can shed some light on this for me.

  2. #2
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
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    Hello Craftkeeper and welcome to WHL!We are so very glad that you fund us and joined. It is very difficult to find out that you have some strange disease that no one really talks about so, thanks to Saysusie, WHL was born.

    The first thing you need to know is that SLE is not a death sentence like it was decades ago. You will find many on this forum that have lived with Lupus for decades. There are even some people that get a diagnosis and once they get on meds they go into something like remission. The best thing that you have going for you is that you got a diagnosis quickly. That means the doctors will be able to get going on a treatment right away (Some on this board know what they have but wait years to get someone to acknowledge it).

    Please feel free to post any time and if you have any questions please let me know
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Thank you TGal. I have to admit, even though i think i'm a pretty strong woman and deal with most things fairly well, this one did put some panic in me. I have a 32 year old daughter and a 9 year old daughter. The first thing that came to my mind was " Dear God, Please just let me live just long enough to get the little one raised.

    Then i started looking at sites and saw that things have changed alot through the years.

    I am trying to keep busy and not think about it,so today i plan on making two new dolls which should keep me busy for awhile.LOL

  4. #4
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hello Craftkeeper:
    Welcome to our family Being newly diagnosed can be quite scary, especially knowing that you have a chronic disease that could be with you for the rest of your life. However, as Tgal pointed out, there are so many of us who have lived with this disease for decades (I was diagnosed in 1985) and who have found a way to maintain a reasonably productive life with this disease. That is not to say that you will not have to make some life adjustments, because you will. But, you can continue to be productive, active, and happy with this disease. Especially if you are willing to do all that is necessary in order to avoid a worsening of your symptoms.
    Since your diagnosis was so quick, I agree that this is a good thing and probably means that your treatment will also begin quickly. As such, you are already on the road to a fairly good prognosis. You will have to remember that you must avoid exposure to the sun as much as possible. If you must be in the sun, make sure to slather your entire body with sunscreen (minimum SPF of 35), to wear protective clothing, hats, sunglasses, and limit the amount of time in the sun. Also, be aware of fluorescent lighting inside of buildings because this can also be harmful to us.
    Make sure that you participate in some form of regular exercise (preferably non-jarring exercise), but do get as much recuperative rest as you can (do not try to be a superwoman..when you are tired..STOP!), eat a healthy diet, take your medications as ordered, avoid undue stress, and educate yourself your illness.
    We are here to help you in any way that we can. This is a wonderfully informative and loving family and we are so happy that you are here. Again...welcome

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Hi and welcome to this great site. You will learn lots here to help you out. How did they diagnosis you? What were your symptoms?

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    Thanks saysusie and Michelefish.

  7. #7
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    Welcome to WHL. We all understand what you are going through and we're here for each other when someone needs to vent.
    Hugs,
    Marla

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