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    Aloha!
    As a "newbie," I'd like to start by saying how happy I was when I came across this site! I was diagnosed with LET w/probable SLE (based on symptoms) just as the weekend was commencing...so naturally I did what most left in my position would do; I Googled, lol! Much to my chagrin I found most of the information to be fairly inconsistent from one site to another...with very little, if any, information available on LET specifically.
    Friday afternoon, I received a call from my dermatologist (actual doc not an assistant...shocker!) telling me that my skin biopsy had come back positive for Tumid Lupus and he was referring me to a rheumatologist to also be tested for suspected SLE, as soon as possible, I was more annoyed than worried....even though some of the only words/phrases I remember comprehending were: referral; further testing; as soon as possible; suspected; systemic and faxing my results (so they "wouldn't get lost") along with the rheumatologist's contact information.
    Although I'd heard of Lupus, I'd never paid attention to the disease's details since no one I'm related to, by blood, had ever been diagnosed with it....and I most definitely had no idea so many different variations of Lupus existed...hence, my lack of initial concern when I received the news.
    I look forward to learning more about this disease from others who actually have experience living/coping with it.
    Aloha!
    C

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    First let me welcome you to our family! You have come to the right place for support and information. There are fabulous people here and always someone willing to help! We will be here for you as you travel down this path and I look very forward to getting to know you!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    SouthFLWahine (09-11-2012)

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    hi, and welcome.

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    SouthFLWahine (09-11-2012)

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    Welcome - glad you found this community
    ~ Morrison
    SLE and Sjogrens
    It's hard to take over the world when you sleep 20 hours a day (Get Fuzzy)

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    Welcome C!

    This forum was very supportive of me when I was going through the diagnosis process and I hope it's the same for you! My advice is just to continue what you've been doing. Educate yourself as much as possible, without driving yourself crazy!
    Best wishes,

    M

    Lupus, Secondary Raynaud's Phenomenon, Pernio (Chilblains)
    Plaquenil, Amlodipine

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    SouthFLWahine (09-11-2012)

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    HI and welcome to WHL SouthFLWahine "C"... We'll keep our fingers crossed here that it's just "LET" and nothing more. From what I found, if you smoke cigarettes, quit (smoking interferes with medication). 'Course, that's a good idea to do anyway. If you go outside, cover exposed skin as best you can with either high SPF sunscreen, and/or clothing. Wear hats. Ya gotta be careful with the sun. You say "Aloha!"... are you in Hawaii, or just wanting to be?... I wanna get back to Mauai... good luck with the future testing and doctor hunt.
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    SouthFLWahine (09-11-2012)

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    I'm originally from Hawaii but transplanted to South FL almost 3 years ago...oh how I miss the islands!! I've got my first appointment with the rheumatologist tomorrow and I was pretty shocked by the amount of time they told me the appointment would last....2.5hrs at least! Is that normal?
    Thanks for welcoming me to the community!! Everyone seems so supportive and definitely knowledgeable
    Aloha,
    C

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    Thank ya'll SO much for the warm welcome and support! I have my first appointment with the rheumatologist tomorrow and I was really surprised by the amount of time I was told to expect to be there for the appointment...2.5 hours, at least! Is that normal? I'm a tad nervous since I'm not 100% sure what to expect and I REALLY hate needles....although I'm sure they can't possible hurt more than my whole body has been hurting for quite some time. The worst part of this has been the utter lack of understanding from my family about being exhausted all of the time, hurting all over, not being able to walk across the room without feeling like my lungs are going to explode cause I can't breathe (sometimes it happens when I'm just standing still...no history of asthma or anything), and my heart races so fast it feels like it's going to burst! I'm only 38 but I feel like an old woman.

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    Sounds like you actually may have found a good doctor! You have one that is going to be thorough and that is usually a good sign! My first one was with me for 10 min. so I say be happy!

    Have you showed your family a copy of "The Spoon Theory"? If not I am enclosing the link. It often helps others understand a bit better what our life is like. (The Spoon Theory)

    Let us know what happens tomorrow. I will be thinking of you
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Thank you SO much for the link and the advice. I'll definitely check it out and pass it along to my family, etc. Being so completely new to this disease, I have been caught unaware...to say the least!
    I'll let you know how it goes with the doc tomorrow. I was just extremely grateful my derm had put in a call for me and I was able to get an appointment so quickly after my initial diagnosis.
    Much appreciated!

    Aloha,
    C

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