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Thread: Lupus rash and its down fallls

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    Angry Lupus rash and its down fallls

    I've met a handuful of people with lupus since i've known of the disease(when i was diagnosed) and I have yet to actually see some one with a rash. My rash is obvious. Very pronounced. I have both SLE and DLE so my rash is not only red but also raised. I get massive edima under my eyes when i'm having a flare up so unfortunetly for me it looks like i got beat up or something. I should of just left out the or something because it looks like I got beat up. I can't tell you the amount of times that people have made comments either behind my back or strait to my face about how "he's not worth it" thinking I was in a bad relationship. At times I have brushed it off knowing it was not thier fault that they knew nothing of what was going on but I have to admit, most times I wanted to just scream. How come I have not met any one or seen even on here pics of people that have the same type of rash that I do? Can any one help enlight me and either show me pics of times when they've had to deal with this or just tell me that they too have had this physical malfuction. My rash doesn't cross the bridge of my nose instead it's both cheeks and the sides of my face. When not in flare mode, the sides of my face(near my ears) are permanently brown because of scarring but my cheeks always have a little red. My face has not been clear since I was diagnosed 10 years ago. I use to think I was pretty but I just don't see it anymore. Is anyone else going through this and how have you learned to deal with other people who don't know you but feel the need to comment? Please enlighten me.

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    Hi Lucy Lu,

    Even though I do not have a real bad rash, I do get red spots on my face.
    I am very famliar with people, who make stupid remarks. I bruise very easy and have bruises all over my body, mostly on my arms and people will say things, or give my poor husband dirty looks.
    I feel more sorry for my hubby, because I don't care what people think.
    Try to ignore it, you know what the reason is, for your rash.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Thanks Debbie, was starting to think no one was listening. Luckily my hubby cares not what others think/say but it does still affect me emotionally. And I hear you on the bruising, have a new one at least once a week. thanks for paying attention. Lucy Lu

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    Hi Lucu Lu;
    I am sorry that you were beginning to feel that no one was listening to you. In fact, most of us here pride ourselves on the fact that we do listen and that we always try to be as helpful as we can. I apologize if you felt that we were not providing you with what you need.
    Many of our members have discussed the rashes on their faces and their bodies. You should know that there are so many different Lupus rashes and the chances are great that no two persons will have the exact same type of rashes. What you describe, however, does sound like one of the most common Lupus rashses.
    We have recently updated our site and moved to a new server. We are still working out the kinks and uploading pictures may be one of those kinks that is not working quite right yet.
    I am sending you these links so that you can see pictures of Lupus rashes in order to see if any of them resemble yours. I would venture to say that there are many with rashes that may be worse than yours and many who have rashes that are not as serious as yours. As I mentioned, our rashes are as varied as the disease itself.

    http://www.lib.uiowa.edu/hardin/md/lupuspictures.html

    http://www.lib.uiowa.edu/hardin/md/ui/lupus.html

    http://cure4lupus.org/store/index.ph...=187&chapter=1

    http://www.dermis.net/dermisroot/en/38333/diagnose.htm

    I hope that this has been helpful to you. Please know that we are always here for you.

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

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    Saysusie, I'm sorry if you felt as if I was attacking the site. I didn't mean to make you feel like that at all. It really seems like you have a good group of people here. I just get frustrated with my symptoms and need to vent. I've had the rashes for over 10 years, identifying them wasn't the problem. I've never seen someone else with SLE that has a rash. I've met about five or six people that have Lupus but no visable signs of it. I wake up in the morning and think "okay, only one side of my face is swollen I can still see out of the other eye, it'll be a good day." Not to mention the other symptoms I get. But thnk you for listening I ment no harm with my venting. Namaste Lucy Lu

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by Lucy Lu View Post
    Saysusie, I'm sorry if you felt as if I was attacking the site. I didn't mean to make you feel like that at all. It really seems like you have a good group of people here. I just get frustrated with my symptoms and need to vent. I've had the rashes for over 10 years, identifying them wasn't the problem. I've never seen someone else with SLE that has a rash. I've met about five or six people that have Lupus but no visable signs of it. I wake up in the morning and think "okay, only one side of my face is swollen I can still see out of the other eye, it'll be a good day." Not to mention the other symptoms I get. But thnk you for listening I ment no harm with my venting. Namaste Lucy Lu
    Lucy,

    Venting our frustrations is one of the reasons we are here. Getting it all out is a good thing, and you need not apologize. You should read some of my angry rant/vent posts. I just totally cut loose, and I almost always feel better when I'm done.

    Rob

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    Lucy, I agree with Rob, we all vent at times and on here we can do so with people that understand what we are going through. I know sometimes I vent out of anger or frustration and after I click on post reply I start second guessing myself and wonder if I maybe got a little carried away only to have fellow members come on that can relate. with out a doubt this is the best place to be for us lupies. I know it is hard to ignore the people that say things, they just don't know any better. I hope all goes well and just remember that we know what is going on Keep your chin up and best wishes to you. Jim
    Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulations, that we may be able to comfort those who are in any trouble, with the comfort wich we ourselves are comforted by God. 2 Corinthians 1:3

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    I did not, in any way, fee that you were attacking the site or our members, so there is no need to apologize at all. As Rob and Scubagramplit have stated, all of us come here to vent our frustration and anger because we know that this is a safe place to do that. Also, everyone here truly understands and will never judge you or belittle you! The people here are very understanding and you will find that there is always someone who has been through what you are going through. So, again..there is no need to apologize.

    You are correct, there are many of us with SLE who do not suffer from any of the rashes. I am one such patient. I do not get rashes, but my skin does get red and every inch of it hurts and/or burns. It feels as if my entire body is suffering from 1st degree burns, but no rashes to explain it. On the other hand, there are many SLE patients who suffer from rashes that are mild to severe with open, fluid-filled lesions.

    Lupus is a disease that has so many faces that it becomes almost impossible to predict anything with this disease. But please know that we will always be here to help you as much as we can.

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

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