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Thread: 17 years of SLE but new to the site

  1. #1
    Join Date
    Apr 2005
    Moorhead MN
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    Default 17 years of SLE but new to the site

    My name is Rhonda and I am almost 35 years old. I was diagnosed at age 18 when my hair fell out. My mother has RA and SLE. The maternal side of my family runs deep with varying autoimmune diseases.

    I have not used this site before, but I like it so far. Everyone has an interesting story to tell and valuable thoughts to share.

    I have been given 6 months to live on 3 occasions in my 17 years of diagnosis, but I am here to tell you that being diagnosed as a terminally ill patient does not make you a terminally ill person.

    I have not had a remission in over 3 years. My most frustrating symptoms include insomnia, excrutiating fatigue, increasingly debilitating pain, and depression. Between years of Prednisone and the occasional bag of Doritos, I have gained about 90 pounds.

    I am currently going through the Social Security Disabilty process and have been doing so for almost three years. This experience has been such a dehumanizing proposition that I wonder if I will even see it through.

    I look forward to meeting you all and I wish you better health and much happiness! Take care.

  2. #2
    Join Date
    Nov 2001
    Victorville, California
    Blog Entries
    Thanked 1,128 Times in 743 Posts


    Hi Rhonda :lol:
    Welcome to our forum and to our family. I know what you mean by the fatigue, the pain and the depression. I, too, even though I am in remission, suffer from those same symptoms. However, instead of insomnia, I feel very sleepy all of the time and, no matter how many hours of sleep I get, I can sit on the couch and sleep all day long!!! That, in and of itself, is depressing
    I know you will find support, information and very kind and caring people here. We are here to help you as much as we can and to remind you that ..... You Are Not Alone!!

    Peace and Blessings

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