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Thread: Hi all....new to the group

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    Default Hi all....new to the group

    Hi,
    This is alittle hard for me...I'm 34 years old and I have had Lupus since I was about 12 years old. I have never wanted to talk to anybody about it...but lately things are getting harder for me. I have had it all...pulmonary embolisms, renal thrombosis, menopause at 25, osteoporsis, nephrotic syndrome and all of the other joys of the disease. I've managed up to this point dealing with this on my own...but I saw this group online....and I was hoping that maybe some support from others, who know what I'm going through, might give me a sense of peace...maybe just knowing I'm not alone might help. So...Hi all...I'm Ruby. :roll:

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Ruby,

    I'm Rob. I'm 40, and was diagnosed with SLE five years ago. You don't need to be concerned about whether you are alone or not with this, because you are not. I tried to deal with all of this by myself too, but I finally had to actually talk to another person who actually has Lupus. I went for a couple of years talking to no one. When I did decide to talk, I realized that despite the good intentions of those around me, the only person who could truly understand was another person with Lupus. That need led me to this site, and I've found friends and understanding here more than any other place, or group I've been around.

    You mentioned, that things are getting harder for you. That seems to be the way this goes for many of us. We slow down, the opressive fatigue and myriad of other symptoms can drain us of every last bit of strength. Sometimes, when I can actually sleep, I sleep the clock around, and two hours after I wake, I can't keep my eyes open. I call it "lead blanket" fatigue. You feel so slow, heavy, and bogged down. But, I do manage to have some good days too, and that's enough to keep me going through the bad ones.

    Anyway, I just wanted to say welcome, and make yourself at home. This is a really active forum, and I'm sure others will be along shortly to say hello.

    Rob

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    Default Rob

    Thanks for the words. It has been getting harder for me lately...harder relating to people. I'm finding the common ground is not there. I've been dealing with Lupus and being sick for over 22 years...and I've always managed relationships with "healthy people" but now I've been struggling. I can't relate much to them anymore. I'm glad to be here. It will be different talking to someone who knows the world I live in. So, thanks for the kind words...and thanks for sharing with me. -Ruby

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    Default oops

    messed up my editing...

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    Hi Ruby and welcome!!

    So glad you found this site cause everyone are so lovely here and we all understand what you are going through. YOU ARE NOT ALONE!! I am Angel and have been ill since 2004. I was told i had different named illness's but the most recent one is Lupus, but i am awaiting blood results. Please know i will give you support where i can and everyone here are very knowledgeable on Lupus.You will make many friends. Welcome Ruby....i understand!!!!

    Love Angel.xxxx

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    Hi Rubyslippers and welcome,

    I'm not diagnosed as yet. Lupus runs in the family and I've had many of the symptoms since I was in my late teens, what I dont have is a doctor worth a fiddlers _____.

    Any way

    This is a great site, glad you found us
    Oh look ... a cookie

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    Default New Member

    Hello everyone you are kinda sorta my Christmas gift to myself. I have SLE and just got home from the hospital I had a tube placed in my heart I call myself the million dollar woman I have two others in both legs. I was diagnoused in 2002 with Lupus,but as I think back to my childhood I feel like I was born with some gene that causes it.I tell all my Dr.s I now rent my body from Lupus as it really runs the joint :lol: :lol: . I am 58 live with my Tibetian spanial,I named her Ms.Celie after a person in the Color Purple. I am not a very talkie person but I shall try to post as often as possible,so for now Merry Christmas to all.

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    Default hi

    Hello Diva alias Million Dollar Woman,

    I chuckled when i read that! Welcome and hello to this site.Oh and Merry Christmas too. Everyone on here are lovely and very knowledgeable about Lupus.My name is Angel and have been sick since 2004.I am awaiting blood results in January, but the doctor says i have Lupus.They said i had M.E before so i shall wait to find out.
    I hope you have or try to have a lovely day today and i am so glad you found us.

    Love Angel.xx

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    Welcome Diva58,

    Glad you found us...we all float every once in a while and then rise to the surface to post. Alot depends on how we are feeling.

    Sometimes the most I can to is read as I get very foggy and forgetful when I try to form a thought for a post.

    Every one here is very kind and understandy.
    Oh look ... a cookie

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    Merry Christmas Ruby!!!! We are all here to get you through all of this You are not alone and we will continue to hold your hand gently as we all navigate our way through this illness. I am sending happy thoughts and gentle hugs to you on this beautiful Christmas morning :x-mas:
    As I grow to understand life less and less,
    I learn to love it more and more.

    Age 29, Lupus for last 7 years

    Medications: Methotrexate, Lyrica, Celebrex, Flexeril, Theophylline, Bactrim, Xopenex, Lisinopril, Ultram

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