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Thread: Feel All Alone

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    Default Feel All Alone

    Hi! My name is Gracie. I am 48, and was diagnosed about a year ago, wit no support follow up. I would realy like to correspond with others who have Lupus. I think Lupus is ofetn misunderstood. I have been accused of just being lazy. It's just my two daughters and myself at home and they do help me a lot. But, I just feel so alone sometimes.

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Gracie;
    Well, you are most certainly NOT ALONE! There are people here, on these forums, from all over the world and we all want to let you know that you are not alone.
    Lupus, as you said, is a very misunderstood disease and almost all of us have been called lazy by ignorant people who do not want to understand the disease. Our problem is that many of us do not look sick. Here is a story written by a person with Lupus that many of us have shared with each other and with others. It is called, "But You Don't Look Sick" and it gives a very good explanation about how we feel:
    www.butyoudontlooksick.com

    Please know that we are here to help you, to provide answers to your questions, to provide information, to give you support and comfort and to make sure that you know that there is always someone who understands and who knows how you feel. I am happy that you joined our family!

    Peace and Blessings
    Saysusie

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    Hi MsGracie48!

    Welcome to the Forum! I'm really glad that you found us!

    Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

    Keep well!

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    Hi Gracie,

    Being alone, feeling alone is an awful feeling. I am sorry you are feeling it. I know. I've even have felt alone while in a room with people in it. Times we get lost in our heads in our illness.

    I hope words on a screen will help, want to email? My address is on my profile or we can chat privately, the PM button at the bottom of the posts. Or messages in the forum is good too. Your call.

    I am 46, my husband travels. No children, tried wasn't sucessful. Currently, he is trying to minimize his duration from home. This week gone, will be back on Thursday night.

    Who are these people who call you lazy? Uninformed indeed. Maybe pass along the book Saysusie recommended. Some people need to see it in black and white to get the jest of it.

    Being called lazy does assault the self-esteem. I hope you do not call yourself that in your head. I use to do, before I understood Lupus and Sjogren's Syndrome.

    The disease can be isolating. How are your symptoms? Currently in a flare? Do you exercise, even just stretch? Into anything spiritually? Doesn't have to be religion. Prescription drugs?

    I will listen to your woes, your happys, your blahs, your angers, your yahoo moments....

    Really, you are not alone. Maybe words on a screen may not be enough...but our suggestions, advice and our experiences, regimes we use to help us feel better maybe will help you to open up the door to your isolation from Lupus. To help you to interact with people in real time without your disease side stepping you. My experience here....it has helped me in that way. I hope it will for you too.

    Just a window away.
    Keep well,
    Oluwa

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    hi gracie, welcome to the forum, and the lupus family.
    I'm 26 year old lupie, had it since i was 15. I know exactly how u feel.

    In all this time not once has anyone in my family been able to relate to me with regards to my illness. on top of that i've had some very bad emotional experiences. But enuff about that .

    Welcome to the lupus family,I promise u'll always feel welcome and cherished.

    And remember, things can only get better.
    I intend to live forever, so far so good

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    Default not alone

    As you can see from the responses, you are not alone there are thousands of us out here. This seems to be the place to share successes as wel as concirns. I'm new to this site as well, but so far it has provided much needed information.

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