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Thread: Hi there from Connecticut!

  1. #1
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    Default Hi there from Connecticut!

    Hello, I've just registered with the forum and thought i would introduce myself. My name is Christie and I was diagnosed with SLE when I was 8 years old. I'm 22 years old now, so I've been living with lupus for almost 15 years now (a long time I suppose when you're only in your early 20's).

    I've had a multitude of other problems stemming from the lupus in all that time, including vasculitis of the brain and most recently, beginning nephritis. I also have Raynaud's Phenomenom and fibromyalgia. Due to what seems like 25,000 years on prednisone i also have Avascular Necrosis (or osteonecrosis) of my shoulders, ankles, knees, and hips. Immunosuppresants haven't really worked for me so far.

    Sometimes living with SLE gets a bit depressing, like now because I have kidney involvement, I won't be returning to school this fall. So, I decided to seek out a forum and hopefully find some support from other people who can relate.

  2. #2
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    Default

    :P Welcome to the site Christie05 ! This is a wonderful place to vent your frustrations, fears, disappointments. To get advice and give advice. I am new myself and everyone here is WONDERFUL!!!
    I was diagnosed 6 months ago with SLE, sjrogrens and discoid. I have been sick for the past 6 years since the birth of youngest child.
    It sounds like you have been on a rolar coaster ride! My very good friend has had Lupus for many years, she is my age (##), she also has kidney involvement. She has had two total hip replacements, shoulder and knee replacements.
    Hope to hear from you soon.
    Hugs and Love,
    mom2two

  3. #3
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    Default

    Welcome to our family! The more the merrier. :BIG:

    I'm pretty new to lupus and the forum as well. I've been diagnosed on March '06. I, too, am taking prednisone and CellCept (for my kidney nephritis). I have my daily doses of the usual: headaches, aches and pains, swollen fingers, achey-hot feet, sun aversion, fatigue, etc...

    I see that you have AIM, I'd love to chat with you online, but, I use Yahoo Messenger. Something's wrong with my AIM. I'm trying to set up a buddylist of forum members, because there are days when you just want to vent and scream, or just talk to someone who knows first hand what I'm going through.

    I am also from the east coast (NJ).

    Welcome to our family! Everyone is very supportive, understanding, knowledgable, and oh so friendly. Come visit as often as you like. You're not alone and we're here for you. :B-fly:
    "I've learned that when bad times come, you can let them make you bitter or use them to make you better."

  4. #4
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    Default Hi, Christie -

    I'm Noel. I can't imagine dealing with lupus from such a young age - you must be an incredibly strong person. I didn't have my first episode until college -and wasn't diagnosed until mid-thirties. Like you, my lupus symptoms started as CNS and vasculitis, stroke-like symptoms and vasculitic lesions on my legs and arms, grand mal seizures, neuropathy, all that fun stuff - kidney and joint involvement didn't develop until later.. I've gone thru all the meds - plaquenil, imuran, methotrexate, cellcept, IVIG, all the DMARDs, finally ended up on high-dose prednisone and IV solu-medrol and cytoxan, which finally got my CNS symptoms under control. I understand how depressed it can make you feel - the fatigue can be absolutely overwhelming. It's also really frustrating when the treatment is almost as bad as the disease. i know the steroids and cytoxan probably keep me alive, but I HATE the side effects.

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