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  1. #1
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    Default Hello

    I am new to the forum , but not new to Lupus. I have been fighting this disease for 15 years and cant do it alone anymore.
    I look forward to sharing and learning from all of you!

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Pstrand1 :lol:

    Welcome to our family where, one of the most important things we want you to know is that: YOU ARE NOT ALONE!!!!
    Everyone here is more than willing to provide you with answers, support, understanding, comfort, information and most of all, FRIENDSHIP!!
    I am happy that you've found us and I truly hope that we are able to provide you with some of the things that you are looking for!

    Welcome Again!!

    Peace and Blessings
    Saysusie

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    Hello New Friend,

    Welcome to this wonderful family of friends, you will soon feel right at home with all of these people. Like you, I thought I was strong enough to handle the unpredictable turns that lupus and its progression would take me through; but I sincerely believe that we were never made to live our lives alone.

    I believe that we ALL have the need to find that safe harbor in our lives, where we can bring our fears, burdens, questions; and feel safe that those concerns will be treated with great care and respect.....and I have to tell you that this is where I have found my safe harbor.

    There are so many caring, knowledgeable folks here that can help you through this rough time. This disease is not for sissies; it brings the strongest of the strong to their knees at times; so please know that there are so so many people here who are willing to walk beside you and help you through those valleys; as Saysusie reassured you - you are not alone....and you never need to be alone.

    So hang on, hold on to hope....and remember once we get through those valleys- we all look back and can see that while it's beautiful and majestic on the mountaintop - it's in the valley where all things grow; our hopes, our strength; endurance; perserverance.....and it's the place where good friends feed your soul and keep your spirits strong....so, welcome to your new family of friends.

    Stay in touch, keep connected and soon you'll discover; as we all have - that you never need be alone. Life is so much easier to bear when you don't have to do it alone.

    Take Care -

    Much love,
    Browneyedgirl
    "I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." - unknown

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    Default Thank you for the welcome

    I am so glad I made this step. I am 45 years old and I have just started having the skin changes, blothes and color changes associated with lupus. I have been very good about using sunscreen year round but this summer even the slightest amount of sun made me ache all over.
    Anyone else experiencing this?

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    Saysusie's Avatar
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    Oh Boy have we!!!!
    I use sunscreen (45 SPF and above) as my daily moisturizing routine and body lotion :lol:
    I also NEVER go out in the sun without covering my body from head to toe in lightweight cotton or linen. I have thousands of pairs of sunglasses and at least 30 hats.
    Even with all of this protection, if I am in the sun too long..I get very, very sick!!
    I think most of us here has experienced that. So, we have to limit the time we are in the sun and take every precaution to limit our bodies to uv rays when we have to be in the sun!!
    Give yourself a few days to recuperate and know that you are not alone!!

    I wish you the best :P
    Peace and Blessings
    Saysusie

  6. #6
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    Quote Originally Posted by Saysusie
    Oh Boy have we!!!!
    I use sunscreen (45 SPF and above) as my daily moisturizing routine and body lotion :lol:
    I also NEVER go out in the sun without covering my body from head to toe in lightweight cotton or linen. I have thousands of pairs of sunglasses and at least 30 hats.
    Even with all of this protection, if I am in the sun too long..I get very, very sick!!
    I think most of us here has experienced that. So, we have to limit the time we are in the sun and take every precaution to limit our bodies to uv rays when we have to be in the sun!!
    Give yourself a few days to recuperate and know that you are not alone!!

    I wish you the best :P
    Peace and Blessings
    Saysusie

    Hi Everyone,

    Even living Texas I an not an "outside child". I feel like my skin is baking or frying as I watch. And that is with me being covered with sunscreen. I family and I took a trip to Disneyword in FL for 7 days in July. I still have sores on my arms even with the steriod cream, etc. I don't think they are ever going to go away. I try to stay out of the hottest part of the day and do any outdoor activities late in the evening. That help alot but it not alway fesable to do everything a night.

    Have a wonderful night.
    May you have a blessed day.

    Yaya

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