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Thread: I'm new to this forum and need help.......my mom has SLE

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    Default I'm new to this forum and need help.......my mom has SLE

    Well my name is Samantha and I am 17 yrs. old.....my mom is 36 yrs. old

    My mom was diagnosed with SLE when she was about 26 but for a long time they were diagnosing her with arthritis.....although my mom has had it for a while now we still don't know much about except for what she experiences......the doctors we have seen don't have much info to give us

    At first it was ok and wasn't so bad...but as time went by she's been getting weaker.....it's just hard on me because i'm the oldest of 6 kids (3 step and 2 real) and my step-father works all day....I am basically the second mom.....i had to grow up fast...

    it's just really overwhelming and i need guidance and advice....does it eventually get easier?....i wish i could take all my mom's pain from her.....

    Thanks for Listening
    Samantha

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    i feel for you samantha. it has to be hard towatch someone you love in so much pain. your young and have alot of responsiblity. i dont know what to tell you about when it will get better. i was just diagnosed two months ago. they also told me 5 years ago that i had arthritis. in the mean time the lupus was attacking my liver. i spent most of the summer in the hospital tring to get my liver enzymes down to a less threating level. my liver was failing.
    now i live with severe fatigue pain and lots of meds. iam thankfull to be alive. i was almost threw nursing school when the lupus got bad.
    finding a good specalist is very important. i fired 2 docs already. i found one that knows lupus very well. it takes time to get into remission. i hope your mom gets better, depending on what meds she is on makes a differnce to.
    good luck ethanandrew :

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    Hi Samantha;
    I am so sorry to hear about your mother. She is very lucky to have you, your love and your devotion. I know how hard it is to watch someone you love suffer. But, believe me, you are doing the most important thing that you can do for her right now...caring, being supportive, learning about her illness and being willing to help.
    As Ethanandrew said, there is no way of telling when things will get better or if they will get worse. Lupus is such an unpredictable disease, it changes, symptoms come and go, and the disease is known for its relapse/remission syndrome.
    There are several books that you can read that can help you to understand Lupus and what your mother may be going through. Also, you can come to us at anytime and we will always be here to give you answers, provide information, give you understanding and support and comfort and to let you know that you and your mother are not alone!

    * The Lupus Book - by Daniel J. Wallace
    * The Lupus Book: A Guide for Patients and Their Families by Daniel J. Wallace
    * Lupus Handbook for Women: Up-to-Date Information on Understanding and Managing the Disease Which Affects Mostly Women -
    by: Robin Dibner

    I hope that these help. If you need more, let me know.

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

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    thank you ethanandrew and saysusie for listening and your support....I'm really grateful....i never had anyone to talk to before.....i'm happy to know there's someone listening.......and thank you for the suggestion on the books i'll check into them.....and to ethanandrew i'm sorry for the pain you have to go through and I'll keep you in my prayers.........


    thanks again
    samantha

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    You are most welcome and remember, we are always here for you and your mother! There is always someone to talk to here!

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

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