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Thread: You Can Beat Lupus!

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    Default You Can Beat Lupus!

    Hi everyone,

    I just stumbled upon this site and wanted to add some encouragement to those of you suffering from Lupus and feeling a bit down. My story: I was diagnosed in 1994 when I was just finishing 2 years of college and set to apply to nursing school. I had waited until my kids were older to return to college and looking forward to realizing my dream of becoming an R.N. Well, my last semester knocked me off my socks with the migraine headaches, the fatigue, the rashes, the arthritis. We had no insurance at the time, so I waited until I was so sick that I couldn't keep down food or water and after losing 20 pounds in 6 weeks, decided -insurance or no insurance, I was going to die if I didn't get help! The first family doctor I went to was wonderful - he wouldn't give up as he questioned me about family history. When he discovered my mother had Sjogren's Syndrome, he thought he'd figured it out - yep - I had SLE and the numbers were off the charts. The rheumatologist he referred me to told me I was about 2 weeks away from kidney failure and was shocked to learn I had made it through that last semester of college. I guess there's some benefits of not having insurance - you can't run to the doctor to see how sick you are, so you just brush it off. Anyway, he put me on mega doses of prednisone and plaquenil and over a 6-mont period, my numbers started to improve and the chronic pain from arthritis, lung and kidney problems began to improve quite a bit. My energy returned to normal (in fact I felt like a kid again!) and I began to question my doctor about how long I had to stay on these medications? As you know, they are very potent and can cause side bad side effects. When he told me "probably the rest of your life" this was devastating news and not one I could accept. I questioned him about remission and he said there are two ways it happens: drug induced and natural. So, (I'm not advocating everyone try this) I started cutting down on my prescriptions to see if I could force it into natural remission (didn't tell my doctor) and low and behold, my numbers continued to improve and my symptoms continued to cease. Eventually, it went into almost complete remission and today - 14 years later, the only thing that bothers me from time to time is a fluctuation in my energy levels. However, that could just be due to age - who knows? I visit a rheumatologist once every few years just to have my numbers monitored, but so far, so good. Now, I hope that's encouraging to some of you who are depressed and going through this. I'm not saying all of you will have this good news, because my Lupus knocked me out of commission for about 2 years and I listened to all the naysayers- many of whom were R.N.'s who told me I couldn't be a nurse and be an R.N. because of the physical demands and the stress, so never finished my nursing degree. However, I work in a very stressful job now and handle it just fine. Please - DO listen to your body (not the naysayers), strive to live a healthy life and keep a positive attitude and don't become a victim! There are MANY of us out here who've managed to overcome in order to live an active, fulfilling life! God bless you in your struggles.
    -Vicki

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    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Default

    Vicki;
    Thank you so much for sharing your inspiring story with us. You are very lucky that your Lupus continued into remission even while you were self tapering your meds. I am so happy to hear that your symptoms are minimal even today! That is wonderful.
    You are absolutely right when you said that we must listen to our bodies, strive to live a healthy life,keep a positive attitude, and not to become a victim. One of the things that we stress here at WHL is for everyone to educate themselves about this disease, its treatments, its medications, and how it affects us individually. In this way, we can become competent advocates for our own health care.
    Unfortunately, there are many of us who are not able to self taper our medications. Often, when we try, out symptoms return or they worsen. I always advise everyone that, if they are thinking about changing their regimen, that they do so under their doctor's guidance because self tapering on some of the medications can actually be very harmful and even fatal. I am so happy that you did not have any of these issues, but I have to continue to advise against it for other members.
    I am so happy that you found us and that you decided to join us. I look forward to hearing more from you as your post was very uplifting and hopeful.

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

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