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Thread: New to the Fourm

  1. #1
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    Red face New to the Fourm

    Hi Everyone,

    My name is Maria and I am new to this forum. I was diagonosed back in Sept of 08 after being in the hospital for what the doctors believed was a severe viral infection. It all started at the end of july, I was on my way home from work on the train and I went to open the door to the car and was unable to do so. Well I sat down in the car I was in and the conductor asked me how I was doing. I told him I was freezing and he found that weird cause it was a warm evening. Well I got to my station and when I got off the train I was shivering and it hurt to open and close my hands. Well the next morning I went to get out of bed and I couldn't move. I had a very important activity to do on that next day so I managed to make it through that but I felt horrable. Well on Friday of that week my husband and I decided that enough was enough cause I was in so much pain and I couldn't move and was pretty much screaming in pain and feeling yucky that we were going to the hospital. They admitted me and ran a whole bunch of tests. I saw a reg doc and a rhumy during my stay. I was released that tuesday. The Rhumy that I saw in the hospital called me on wednsday asking me to go to her office cause a test came back abnormal. Well when I went in she told me that my ANA test was abnormal and she wanted to do more testing. She told me after my tests came back that I have the beginning stages of SLE(lupus). Well I have been out from work on Short Term Disability since then. I did try to go back to work at the end of Nov but that didn't last long. The first week I only could work 1-2 days and the 2nd week I tried to work I barley made it 1 day. I have been on all different kinds of meds and they haven't really been doing much. I have good and bad days but lately its been more bad than good. So that is my story.
    God Bless you always,

    Maria

  2. #2
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    hi maria,\

    wow, what a story. thank goodness your husband is by your side, and walking this path with you. many of us have had to let go of very fulfilling professions, and some are on disability. there is a thread in "lauri's lounge" where several of us told about our lives before lupus.

    so sorry that you have gotten this diagnosis.. being cold (for no apparent reason) is so familiar, i get chilled to the bones, and just can't get warm. i keep open finger gloves close by, and wear whenever my fingers start to get cold. once the cold sets in, it just keeps getting worse. the pain is unbearable....i know, and i am sorry that you have to feel such pain.

    what meds are you on. if you have started plaquenil, it often takes 5 or 6 months before it starts to help.. some people are able to control their disease with plaquenil, where others require so much more. hopefully, you will be one that needs only plaquenil.

    lupus life is much easier to endure when you have loved ones at home, and when people from this forum are around to walk with you.

    good luck, stay with us,,,,you will be glad.
    Phyllis

    share a smile today

  3. #3
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hello Maria,

    I'm Rob, and I was diagnosed with SLE five years ago. I'm 41 now. Welcome to our group!

    Rob

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    Hi Maria!!! You're going to like it here! The people are GREAT!!!!
    We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette

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    Default hi

    Hi Maria,

    Just to say welcome to the forum and glad you found us all.

    Sending you gentle hugs
    love
    Angel.xxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

  6. #6
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    Smile

    Hello Maria and Welcome....

    Glad you've joined us...you've found a great place for lots of understanding and support.

    Sorry your days are more bad than good at this point. I hope and pray your doctors will be able to find a treatment that fits your situation and brings you some relief.

    Sending you gentle, caring HUGS across cyberspace..........

    Fondly,

    Lori

  7. #7
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    Smile

    Thank-you for all the welcomes I look forward to getting to know you all and becoming friends with you all.
    God Bless you always,

    Maria

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    Hey Maria,

    Boy you have had a very bumpy ride...I am Karen..I was diagnosed with Sle Oct. 2007.
    It is nice that you are able to do short term disability...hopefully the plaquenil and other meds will start working.
    I also have the freezing thing...I am cold in the summer at times..I hate being cold, but I can't be too hot or I lose much of my cognative ability as well as all energy.
    Welcome to this forum...come here and vent or just get to know us. We learn from each other. If somebody has something like you then they might have another take on it.
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

  9. #9
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    Hello Maria,
    Sorry that you been feeling sick when i first got diagnosed i was the same way . I have SLE since 2000 . I am also named Maria
    If you are take Plaquenil it will help you it did for me i tried so many medication and know finally i feel better.
    Last edited by maguadalupe; 03-29-2009 at 06:26 PM.

  10. #10
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    Thank you so much for the warm welcome. I have noticed that everyone is really nice on here. I am so glad that I'm not alone here. My family and friends are supportive but as we all know they don't want to hear that you are doing bad cause they care about you and also you can only tell them how you feel so much till it sounds like you are being a baby(at least that is how I feel) so again its nice to be able to talk to other people like me that are experienceing feeling and symptoms like me.
    God Bless you always,

    Maria

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