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Thread: Newly Diagnosed.. and NO one understands

  1. #1
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    Default Newly Diagnosed.. and NO one understands

    Hi all,

    I am so happy to find this site - and the many words of encouragement. It gives me a great sense of optomism that there are others out there who can understand what its like to deal with Lupus on a day to day basis.

    I was diagnosed only a few days ago (SLE), after 2 years of severe fatigue and even weirder, vascular headaches. I chronicled some of it on my blog (http://prchick.blogspot.com) but for the most part, its been a battle. Im a single mom, and a career woman - so needless to say a lot of demands on my time.

    Nonetheless, I just dont feel like my family "gets it".. I know sharing information with them is the best bet for them to understand the how, when, where it hits.. but for some reason it just doesnt click. Any suggestions?

    Thanks!

    Chal

  2. #2
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    Default

    Welcome Chal. You are right about finding encouragement and support here. I think you are right that it is hard for family and friends to understand what you are going through. There is a really good website: www.butyoudontlooksick.com. The author has what she calls a spoon theory and it is a way to explain to others what it is like everyday to live with lupus or any other debilitating disease. I have printed this out and given it to a lot of my family and a few of my close friends.

    Take care and I am glad you are here.

  3. #3
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    Default Welcome!

    Welcome Chal!

    I know what you mean about your family not getting "it" and being a career woman. I've been going to a rheumatologist for the past 5 yrs but was finally diagnosed with SLE in July. I started having seizures in April and then by the time my rheumy got back from vacation, could barely do my hr commute each day to work. She did a ton of tests and finally found I have CNS vasculitis and had to start chemo. During that time I was training for a new job, flying back and forth from Colo to Tempe AZ each week and doing chemo once a month!

    This board is great support and SaySusie is very knowledgeable. I'm sure you will find you are among those who completely get "it" and can help support you!
    Catlady4520

  4. #4
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    Hi and Welcome.
    Its a long battle for diagnosis and recognition in many areas. I am from the UK and with my nursing background I was not taken seriously for about 2 years. Now I have been diagnosed for 2 years, have medical retirement from work and am free from the stresses of life. Its time this illness was more widely understood.
    Val

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