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Thread: Lupus Research

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    Default Lupus Research

    I've decided I can't just bloody sit here and do nothing while my girlfriend is in extreme pain.

    I'm here to request links to major lupus research findings, and I would love it if the findings are extremely detailed.

    Argh.. why isn't there something like a FOLDING@Home for Lupus research??????

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    read most of them except the spoon theory... all of them are bloody vague too. No definite answer to lupus. Wtf

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    That is the most frustrating thing about lupus. There ARE no definite answers.

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    You should read the spoon theory... It describes very well what we go through on a daily basis... Maybe share it with her as well...
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    yxhewc:
    Is there a definate answer that you are looking for? I've noticed that we have given you many suggestions, referrals and information and none seem to be what you are looking for?
    As Sheryl said, there are no cut and dry answers for lupus. That is the most baffling thing about this disease. You should know that the reason that there is no cure for or definate treatment for lupus is because there isn't one certain thing that doctors can find that causes Lupus.
    I know that you want to help your girlfriend, but I can't imagine that you can be of much help to her until you understand the one basic thing about this disease: It's unpredictability and the fact that there are no straight forward, clear cut answers. You cannot say that doing this will take care of that!! It does not work that way with Lupus.
    You must educated yourself about this disease with an OPEN MIND to the fact that you are not going to make Lupus or the web-sites or the information do what you think they should do. Accept Lupus for what it is: an unpredictable, lifelong, autoimmune, chronic disease that affects everyone of us in a different way!! When YOU come to terms with that, then you will be of more help to her. When you become a bit more tolerant of the issues and a bit more understanding of the disease, your girlfriend my open up to you again.
    Right now, I don't think that you are helping her very much because you are not understanding the disease. You will not find one place anywhere that gives you all of the answers to Lupus. The nature of the disease itself precludes that from happening.
    Read the posts on this forum (like I said, with an open mind), read the many books written about the disease, educate yourself knowing that no one anywhere has all of the answers. If that were the case, we would probably have a cure for Lupus and we do not have that yet!

    Saysusie

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    The other really frustrating thing is that it is different for everyone... Something that may work for one person doesn't necessarily work for another... One person can have Lupus, go into remission, and stay there for the rest of their lives... Another person might never go into remission... While yet another, might go in and out of remissions throughout their life... And all three of these people may have the exact same type of Lupus, and may all be on the same treatments! You never really know...
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    Yxhewc;
    You are right, there are NO definate answers to Lupus. Lupus affects every one in a different way. Its name (SYSTEMIC LUPUS ERYTHEMATOSUS) tells us a lot about the disease:
    Sstemic = means it affects every part of our body (multi-organ disease), internally and externally (cutaneous manifestations). Some of us have up to 30 symptoms while some of us may only have one or two. Some of us have almost all of our internal organs involved while some of us have no internal organs involved. Some of us can be prescribed up to 20 different medications while some of us may only have to take one or two. Some of us can participate in marathons while some of us cannot get out of our beds. And, on top of all of that..some of us who take only two medications and have no organ involvement today may find ourselves taking 20 medications and having multiple organ involvement next week. So, not only is the disease different in all of us..it even changes in each of us. So, it is unpredictable even in our day-to-day management of it. Lupus is known for relapse/remission which means that we can feel relatively good today (remission)and then can be sick as a dog tomorrow (relapse). Our relapse can be as short as a day or as long as a lifetime. Our remission can be as short as a day or as long as a lifetime...and the relapse/remission is different for each one of us! Please try to understand and accept this fact about the disease and understand that there is no single, definate answer; there is no single source of information; there is no single prescribed medication; there is no single prescribed treatment, there is no hard set of symptoms that follow a linear progression (lupus, its symptoms and treatments are all over the map). Lupus is an ever-changing illness that cannot be put in a box and explained. knowing that may help you to understand your girlfriend and also help you to support her by being informed and educated about this unpredictable disease! Some of us have systemic lupus, some of us have discoidal lupus, some of us have lupus nephritis, some of us have cutaneous lupus (I could go on) ... But, we all have LUPUS!
    Peace and BLessings
    Saysusie

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    Hmm... I did notice a trend in things though. At least that is definite.

    I met a few people (well, about 20 of them) in my personal research on lupus, and I found that patients with positive thinking stay in remission longer (2 of them I know never had a flare for over 10 years already)...

    Thanks a lot for your replies guys

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    It helps a lot! Less stress is better in autoimmune diseases... But, it's still not a guarentee... And THAT is frustrating... I used to know someone who had probably one of the best outlooks on life EVER! But, she was WAAAYYY sick... And really no amount of positive thinking was going to help her... But, she tried!!! And it DEFINITELY doesn't hurt...
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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