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Thread: New to the site...Lupy from MA

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    Default New to the site...Lupy from MA

    Hi all,
    I was diagnosed with SLE in September of 2003. It's been an interesting ride. I had been showing symptoms for almost as long as I could remember, and it took them until I was 21 to diagnose.

    I am very fortunate in that I have a loving and caring husband-to-be who takes very good care of me. Together with our families we have been able to raise money for Lupus research, and I am so happy and proud to have this support system.

    That being said, it is still hard sometimes to convey to them exactly how I am feeling, and I know that they try to understand, but they just don't get it sometimes. It's hard to explain the loneliness, the sadness, and the pain that comes along with this disease. Sometimes when I am having a flare, I just get so sad and lonely - I can't explain it. My fiance tries to comfort me... but it's hard to get comfort for something that you really can't explain or share. I know it is hard for the people that I work with to understand my disease. And I feel guilty missing work when I am sick. When I am there, I try to be diligent and work hard, but every time I am out it feels like a major set back. I don't tell them the details of how I feel everyday - simply because I don't want pity and I don't want to be a sob story. But it makes it hard to tow the line sometimes, knowing that they don't know how hard it was to get out of bed because I was so exhausted and hurting.

    I've read some of the posts and look forward to hearing all of your stories, thoughts, concerns, and suggestions. We have to stick together, and together we will make each other stronger.

    xoxo

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    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hello DaughterofHera :lol:
    Welcome to our family where everyone does understands and you do not have to hide how you are feeling. We all know the loneliness of this disease, we all know how frustrating it can be to try to make others understand. Many here are also dealing with the employment issues of being extremely exhausted, unable to be as productive as they once were, and some have even had to give up their jobs or find more compatible employment.
    There are many wonderful, caring, informative and understanding people here. There will always be someone here for you when you need answers, when you need information or if you just need to vent. I am happy that you found us and that you decided to join us. I look forward to your participation and I hope that we are able to provide the support that you need.

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Thanks for the warm welcome Saysusie!!

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    hi there

    i have to give my welcome too. ive only been here a few days, and already this community has given me a reason to keep positive. im sure it will do the same for you.

    i too have issues conveying how i feel, the pains, and complications with others. im not in search of pity or the easy way out. just your understanding that this is a serious issue, like any other mainstream diseases and conditions. you are really lucky to have your family
    anyways, welcome
    suffering from lupus, wish i were living with it, and surviving

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    Hi Rachie,
    Thanks for the welcome.

    I'm sorry you don't have your family's support. I can't imagine how hard it is. From what I've read on this board already, you've found a good place to fill the void. Surrounding yourself with caring, loving people is the best way to lift yourself up.

    Best wishes,
    D

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hello from your northern neighbor, and welcome! So many of the concerns you talk about are common themes amongst all of us here. I think you'll find the people here down to earth, and very caring. I know I have. Once again, welcome!

    Rob

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    Quote Originally Posted by rob
    Hello from your northern neighbor, and welcome! So many of the concerns you talk about are common themes amongst all of us here. I think you'll find the people here down to earth, and very caring. I know I have. Once again, welcome!

    Rob
    Rob, I am originally from ME. Great place. I still have a lot of family up there.

    Thanks for the welcome!

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Very cool! Where are you from in Maine? I grew up in Houlton, and now live just outside of Bangor. Small world huh?

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    Quote Originally Posted by rob
    Very cool! Where are you from in Maine? I grew up in Houlton, and now live just outside of Bangor. Small world huh?
    You have got to be kidding! I grew up in Houlton and a lot of my family still lives there!

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    wow, thats amazing

    you both have just shrunk the world. i wonder if u both have ever come across each other b4
    suffering from lupus, wish i were living with it, and surviving

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