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Thread: Newbie...looking for support in Texas

  1. #21
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Good...so happy to hear it. :lol:

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    Hi Sweet Rumble!

    It's an absolute pleasure! I'm SO happy to hear that your daughter is feeling better!

    Keep well!

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    Marycain, thanks for posting those links. I passed them on to my colleagues at work, and they were very appreciative of the info!
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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    Default feeling crazy today.....

    not feeling so hot today i just HATE the way I look!!!! I just cant find someone out there that doesn't want an arm and a leg to be treated, that hurts.....alot....sorry guys just need to vent!!! I'm so angry or maybe it's just tried..... of trying to do anything about my situation.....I dont know anymore....


    ok, I think im done....



    maybe not....GOD I HATE MY FACE!!!!!!!I HATE THE THIS CRAP, I KNOW IT'S NOT AS BAD AS DLE CAN BE,BUT IT'S CLOSE......I HATE MIRRORSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSS SSSSSSSSSSSSSSSSSSSSSSSSSSSSSS
    I HATE TO LOOK AT MYSELF, I HATE TO SEE PEOPLE LOOKING AT ME. I HATE PEOPLE THINKING I HAVE A HUGEEE ACNE PROBLEM!!!!!! I HATE LIVING WITH THIS!!!!!!!!!!!! I HATE IT, I HATE IT, I HATE IT!!!!!!

    okay done for now, i feel somewhat better.



    sorry guys i really am trying to just deal with it and live with it and go on with my life but there are days like these that put me back in my place.

  5. #25
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    And..you go right ahead and scream and yell and fuss and vent as much as you need to!! Of course you are going to have moments when you hate the disease and when you hate what the disease has done to you and your body! We have all been there at some point ourselves! We either have swollen faces and bodies due to the steroids, or open lesions due to the disease, or bald heads due to the lesions, or swollen joints due to the inflammation and I could go on and on with the physical suffering that we endure because of Lupus and its many symptoms. It's ok to be angry sometimes and to feel frustrated and fed up!
    Just trying to deal with this takes a lot of strength and, whenever you feel like you need help, we are here for you. Just remember, whatever you are going through, you are not alone!!!

    Peace and Blessings
    Saysusie

  6. #26
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    Default SaySusie

    Thanks Saysusie, I know I dont have it as bad as it could be..... I know one day I will learn how to eventually live with the lesions, losing hair, aches and pains, the looks of others....and all the discomfort that comes with this disease...I'm more thankful that I found this site to release some of my fustrations about it...helps alot!!!!! My daughter had a music play today Outside in the HOT HOT SUN.....when I first got there I just sat in my car, back kind of far from everyone out of the sun for a while....I had no makeup on, so I really didnt want to be seen, somehow I got up the courage to put on sunscreen and I put some facepowder on , which doesn't really cover anything, got out of my car and slowly walked my way up closer to where I could see her...I saw that she was looking around for me, so I went in alittle closer, were alot of other parents were sitting......I got a few werid looks but just focused on getting that right spot so my daughter could see I was there, she finally saw me and she had the biggest smile on her face, I teared up just knowing she didnt care how I looked, she was just glad I came out to see her. It felt pretty good not thinking about the way I looked, even though it was in the back of my mind, I could feel the looks,you know that feeling when you know someones looking at you..I just tried not to think about that. I felt like I had control today and didnt care about everyone seeing all the lesions without makeup on......for that one moment..... I dont know if I'll do that again, without wearing all of my makeup...... anyway I felt like I accomplished something, not sure what it was but I felt good today........... So thanks for understanding and letting me VENT, CRY, VENT, and CRY some more. I'm sure I'll be back soon to VENT, CRY, and CRY some more til I can get a better understanding about Lupus-DLE and firgure out a way to make it a part of my life, instead of it controlling my life. Slowly but surely I will get there.
    Thanks for listening
    SR

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    SweetRumble:

    Oh I'm so sorry you had to go through that.....but you know what... You're right...your daughter was just happy to see you there watching her and she does not care that you have DLE on your face. That made me want to cry when I read it. I ofter worry too that when my daughter starts school, will she notice that my skin does not look like the other mommy's ya know?

    That was VERY courageous of you to hold your head high and not worry about others and what they think. Thank you for sharing that story...I hope you and your daughter have a good day today.

  8. #28
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    And, it makes us all stop and realize that there is nothing more important in this world than the unconditional love that we get from our children and our families. That, just seeing you there put a smile on her face was the most important part of the entire day. You are her mommy, she loves her mommy no matter what and all she wanted was to see her mommy and there you were!!!
    If the other people in the audience could not recognize the beauty and importance of that moment, then it was (and still is) their loss. You and your daughter shared a beautiful moment that goes beyond your Lupus, your lesions and even some of your pain. And, just think, there will be so many more of those moments to come, especially as long as you realize what is truly important to you and to her!!
    You are Truly Blessed!! I applaud your bravery and your love for your daughter!
    I wish you much Peace and Many Blessings
    Saysusie

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    Amen to that Saysusie!

  10. #30
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    Default Hey Guys.....

    Just wantd to stop in a minute and say HI , sry it's been awhile...getting ready to move. So here's my update....I finally got an appointment with a new Dr.. Even though it's in January, I finally found someone that doesn't charge alot...for first time visit.....hopefully he will help me out with these lesions, speaking of lesions....I had wayyy to much sun this passed weekend and paid dearly........was sick for about two days and ended up getting more lesions....but not on my face this time (very thankful for that), now they are on my hands and shoulders/back......I guess thats what i get for spending too much time outside. Even wore sunblock like it was perfume...it's just so hard because the kids are wanting to do so much for the summer, outdoors. And most of the time it's soooo hot and trying to wear long sleeves, hat, pants....it's hard to breath because it's so hot......Sometimes it makes me feel pretty bad that I stay indoors alot, I wish i could explain what's going on so the kids can understand why mom doesn't like being outside for too long.....I've tried telling them and explaining whats going on but I dont think they really understand. I thought they did but I'm not sure.Maybe they just forget, but I dont want this to be such an Issue for summer......any Idea's on some Inside summer fun?

    Ok, enough of that for now....How is EVERYONE out there?????

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