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Thread: My life revolves around.....

  1. #1
    Join Date
    Jul 2009
    South Carolina
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    Default My life revolves around.....

    I woke up one morning my life revolved around my family...
    I woke up one morning my life revolved around my work...
    I woke up one morning my life revolved around my doctor...

    I often lay in the bed and think back to the good old days...
    I could run and play in the sun back then...

    Now the vampire life comes, I sneek out in the dark just to go to the store... I wear sun screen and big hats and dark glasses... I fear that big ball of light that hangs in the sky each and every day...

    My family does not understand, My friends don't come around... they don't know what this does to me... They all think I am crazy, especially when they say "oh you look Fine"....When all along I am hiding my illness and they can't see that...

    I woke up one morning my life revolved around my family...
    I woke up one morning my life revolved around my work....
    I woke up one morning my life revolved around LUPUS....

    My joints hurt, I can not walk, sometimes I can not talk...
    "Oh you will be ok" mutters my mom, does she know, does she really know
    that I will be ok...I don't even know that..

    from one day to the next, I don't know what to expect...The flares come and go... the monster learks out... Seems as though it hides under your skin and hits just when you don't want it to...

    my kids ask me to go out, I make up exceses not to go, to keep from telling them I am sick and can not make it...Seems like I am always making excuses...Oh I have this to do or that to do,when only I am hiding...

    Oh my poor husband he has the biggest task of all, he works hard but now he works for both of us... He does not ask for much, just to have a happy healthy family... Oh does he get that... In our vows it says for better or worse through sickness and in health... who knew when he signed the marrage license that he was signing up for a life revolved around LUPUS....

    The days go by and my life goes on.... I can not remember, I can not think...
    will I remember writing this... will I remember even being on line... I can't remember what I did yesterday...

    Oh where was I !!!oh yeah I have brain fog thats it, brain fog sets in and I do crazy things... feed the dog cat food and feed cat dog food... forget to pay the bills, forget to make the tea, oh my God I forget to turn the stove off... Will I burn the house down or will I hurt my self today... It's a question that lingers in my mind every day...

    I woke up on morning my life revolved around my family....
    I woke up on morning my life revolved around my work...
    then I woke up one morning and my life revolved around

    I cry, I scream but does any boby listen, only those that live the life of lupus... I wouldn't wish this on my worst emeny... I wouldn't even wish it on the cat... I just wish it would go away...

    Life is hard and you make the best of it.... you take the good with bad... and the bad with the ugly... and you try to understand it all... if only I could understand why my life revolves around LUPUS....

    carzy old silly me just rambleing on and on
    SLE Lupus diagnosed 8/8/11
    COPD,Raynauda's, IBS, Asthma, Sleep Apena, Amenia and Arthritis,Diabetes,Reflux TMJ, temporal arteritis
    Half dead, cripple and crazy but still above ground.
    Novolog injections, Medrol injections, MTX injections, Dicyclomine, Plaqulin, Iron, Spreva inhaler, Advair inhaler, Albuteral inhaler, Fish Oil, Calcium, Diclofenac, Citalopram and doxcycline

  2. #2
    Join Date
    Dec 2008
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    Default hi

    Oh what a well written piece of sadness and described Lupus and your feelings so well.Im sending you hugs and thanks for sharing this with us all. I hope one day you wake up and your life will revolve around pure happiness and hope one day you wake up with less pain also. You've had such a massive journey and been through the unimaginable.You are the strongest person i know so you keep fighting this .

    Thinking of you
    love Amanda.xxxxxx
    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

  3. #3
    Join Date
    Nov 2001
    Victorville, California
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    I ditto what Angel has said. Such a well written and beautiful piece that is both sad and encouraging! Thank you for sharing it with us and I, too, am sending you hugs of understanding

    Peace and Blessings
    Look For The Good and Praise It!

  4. #4
    Join Date
    Jun 2006
    Thanked 17 Times in 13 Posts


    That was AWESOME!!! Such true words and could not have been explained any better! I am so impressed! I relate to that so much! Thank you for writing such a wonderful piece!!!
    Diagnosed in 1990 at age 11.
    Trust in the Lord with all of your heart!

  5. #5
    Join Date
    Dec 2008
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    Thanked 81 Times in 70 Posts


    hi lea,

    it is so sad, you wrote a beautiful description of our daily lives with lupus. I wish none of us had to understand every word that you wrote.

    keep holding on,,,,,hopefully this flare will end soon, and you will enjoy some good times....even better, maybe you will go into remission.

    thanks for sharing your heart with us.

    share a smile today

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