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Thread: New to this forum but not new to Lupus

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  1. #1
    Join Date
    Dec 2007
    Philadelphia, PA
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    Default New to this forum but not new to Lupus


    As the title of this posting indicates, I have had Lupus (SLE) for quite some time. I was diagnosed with SLE at the age of 16 - I am now 27. During these last 11 years, I've had several complications (pleurisy, pneumonia, joint paint, seizures, fatigue, hospitalizations, etc.) but I also have had the blessing of many years of remission.

    I graduated college, went to law school, traveled and lived in many places around the world, met a great man, found a not so great job that pays the bills. I felt, having faced many, many, many ups and downs with this f$!*ing disease, I had actually come to terms with Lupus. In fact, I looked at Lupus as a blessing rather than a curse - something that forced me to examine my life in a very mindful way, eat healthy and nurturing foods, get plenty of healing exercise, stay out of the sun, etc. - things that everyone really SHOULD do, but because of Lupus I HAD to do. And by doing all of these things I felt pretty good most of the time, for long stretches even great and "normal".

    But in the last year and a half two new challenges have been thrown my way. I have been diagnosed with Discoid Lupus and have very large lesions on my scalp and I have lost a considerable amount of hair. I know it's incredibly vain, but this has been incredibly debilitating to my sense of self, and my sense of sexuality and beauty. I am a natural redhead (strawberry blond) and have always been told that my hair is one of my best features. All of that is now gone. I never wear my hair down, I always cover the top of my head, etc. Is anyone out there experiencing this type of Discoid Lupus? If so, how are you dealing with it? Are there any hopes of gaining hair back? I can't discuss this with anyone in my life, I feel such a sense of shame and embarrassment.

    I had also been experiencing symptoms of lupus nephritis such as foamy urine, excessive weight gain (30lbs. in 2 months I think due to water retention - is that possible?), swelling, etc. so I had a 24 hour urine test done. The only part of the results my rheumatologist would discuss with me were the protein levels (I'm losing a little over 4,000 mg of protein per day), however in an early urinalysis she said there were also red blood cells in my urine. I'm scheduled to see a nephrologist but I'm really worried about what stage I might be in relating to Lupus Nephritis. I am also incredibly afraid of the treatment options out there for this condition. Does anyone have any advice? Does anyone know what this level of protein loss could mean?

    I'm sorry about the length of this posting, I'm just really needing some help and guidance from people who understand what I'm talking about and feeling - the only person I've ever known who had Lupus died from disease complications several years ago. I can't believe this forum exists! I'm in a really dark place right now and desperately want to get out of it. I feel the more I know and understand, the less I will feel out of control.

    If you've made it to the end, thank you. I would greatly appreciate an email or response. Thanks!

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    riverlaken (05-13-2011)

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