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marion
12-17-2007, 05:02 AM
Hi there,
I am Marion from Holland and have had CDLE for years now.
I hope by coming here I can learn more about lupus and make friends:)

PJ
12-17-2007, 06:49 AM
Hi, I'm PJ and I'm new here too. I don't have anything useful to contribute I just wanted to welcome you.

joakris
12-17-2007, 09:52 AM
CDLE? is that the skin ? I have SCLE! where do you get it? and does it come in the same spots?

marion
12-17-2007, 12:13 PM
Hi there,
I get it on my right cheek and yes it comes on the same spot.
Never get it on any others parts of body.
At the moment though my whitebloodcell count is low and am on plaq 400mg.

joakris
12-17-2007, 01:05 PM
hmmmm... they think i have scle whic has been one big nightmare! it first started on my left arm then moved to my upper arm then my thighs and my chest, it was reeeeeeeeeeaaallllly bad on my legs ( I took pictures ) i looked up the rash online and hoestly my pictures were worse then what they had pictures of online! I thought for sure I would never have normal looking skin again.
Now i have spots of discoloration and little patches here and there but not anything like i had.. I hope i never get that bad again! I think it got that bad because i didnt know what was going on. and what to look out for.. but now as soon as i think my rash is starting up again I apply tycnamolione 2xday! I have noticed that the more stresssed out i am the worse it gets.. I used to go tanning alot before this lupus thing and now havent gone in over 4months! my derm says never go again! so i guess this pale pasty complection is what im gonna have to get used to. I cant imagine having this or any other type of skin problem on my face. I really feel for ya. I know how much I went through motionally just with this on my legs and arms, thank god i could cover it up but after awhile i realized this is ME and no one can or will make me feel like im not beautiful. ( dont get me wrong I still get depressed about how i look) but days are better lived not worrying about the petty stuff.
keep me posted with how you are doing this is good for me.. I dont feel so alone

marion
12-18-2007, 04:01 AM
What a story Joakris and I also feel for you.
At the moment my dermatologist says the lupus is very active so I suspect SCLE as wel.I need to see him again in a months time.
What sunblock do you use though in the sun?I am a red head so sun has always been a nono for me.20 min in the sun and I am toast:)Keep me up to date with things ok?:)

Saysusie
12-18-2007, 08:36 AM
Hi Marion, Joakris and PJ;
I am a little late in welcoming you, but I wanted you all to know that we are very happy that you've joined us. As you've already seen with each other, the people here are very responsive, informative, supportive and comforting. We want you to know that you are not alone and that, regardless of the type of Lupus that you have, someone here knows what you are dealing with!

Peace and Blessings
Saysusie

marion
12-19-2007, 01:56 AM
Thank you, I feel very welcome!