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SweetRumble
05-08-2007, 01:11 AM
:? I'm new to this site, I find it very interesting. I'm hoping to find a support group or just some people to talk to about DLE....discoid lupus....
I have had DLE for about 4 years now....for me I have to live with these sore looking things on my face...about the size of a quater. I have serveral. I have to admit i have very low self esteem now...I'm not sure how to handle these sores on my face. I use consealer to hide them as much as possible but wearing the consealer makes if worse and even hurts, I do try to go without makeup but that is where the low self esteem comes in. Anyway, i would love to get some kind of info. or just advise on how to just live and go on with it. Thanks a bunch.

utenutter
05-08-2007, 02:24 AM
hello and welcome,
i get rashes on my face all the time and sometimes it gets quite large and really purple and raised,it wierd sort of, i know they are there but i dont realise they are there until i walk down the street and some one is staring at me, then it hits me again,(i know what i want to say but i can't put it in words am i making sense)
i suppose overall i think to myself i know who am i, i know what i got, i know my family will always love me for what i am so everyone who is outside this square don't know shit!

i use a cream called advantan oitment i takes a couple of days to work but reduces the rash,swelling etc

i am sorry if that was hard to follow and hope you can something from it.

keep strong everyone here will always listen

shane

Ruth1980
05-08-2007, 03:33 AM
Welcome to the site!! I am sorry to hear about your troubles, I know how frustrating that can be. Please know that you can always vent, cry or talk here as much as you want, everyone is really good at replying and supporting one another. Best of luck!

camyskitties
05-08-2007, 07:21 AM
Hi and welcome...

I have DLE too. Did your doctor discuss meds and makeups you can use? There are some makeups that are for very sensitive skin that might help you. I have a problem finding a good one b/c my face breaks out too. But I hear a lot of good things about the mineral makeups. And I am assuming you use sunscreen right?

I understand how you feel. I wish I had some wonderful insight to give you about dealing with this but I don't. I'm still looking for a way to deal with it myself and I have had it for nearly 10 years. It is extremely frustrating to live with. And most people I know do not understand what it is like to see this every day when you look in the mirror. Hang in there and if you ever need to talk don't hesitate to email me. :)

IloveHistory
05-08-2007, 01:53 PM
Hi SweetRumble!

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

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

Keep well! :)

SweetRumble
05-08-2007, 04:30 PM
I just wanted to say thanks to all that replied to my message, it's nice to know that there are others that know what I'm dealing with. I think i cried for hours reading the replies. I appreicated it alot, this is a very sensitive subject for me because i do know little about it and i do notice people looking at me like..what tha...i did go to the dr. when i had one on my cheek...since then it has gotten worse i went from having one on my cheek to having more than ten all over my face, it is depressing...I hate to look at myself in the mirror...i haven't been to the dr since it got alot worse, but not that i dont want to , when i was diagnosied i had insurance and now since things have changed i dont have insurance to cover me without paying an arm and a leg....they say i have a pre-existing condition...any ideas on what i should do or what i can do. Thanks so much again all you guys out there.

Saysusie
05-10-2007, 07:25 AM
Check with your state health department. Many states make arrangments to cover people who don't qualify with private insurers, usually through some kind of high risk health insurance pool. Other names these programs can go by include "Medicare Supplement Plans," "Specified Disease Policies," and "Catastrophic Policies." Call your state Department of Insurance to see if such a program exists and find its cost. Your hospital social worker can help you as well. It's expensive (some states, by law, have the rates set 2x higher than the average state rates) but probably not as expensive as a catastrophic illness without any coverage at all. The same pre-existing conditions will likely apply, but if you can COBRA until you get the state one set up, they'll probably cover everything. If there's a lapse in coverage, the pre-existing conditions should apply.

I hope that this has been helpful :lol:
Peace and Blessings
Saysusie

wombat
05-10-2007, 07:37 PM
:? I have had DLE for about 4 years now....for me I have to live with these sore looking things on my face...about the size of a quater.

Hi SR.

I'm not sure if you can get the same medications in USA as we do in Australia, but a good cream to use may be Paraderm Plus. It is a mild antibiotic, anaesthetic and antihistamine. The antibiotic kills any surface bacteria (that may make the sores worse), the anaesthetic will ease any soreness or itchiness and there the antihistamine takes out the inflammation.

cheers
wombat.

SweetRumble
05-11-2007, 07:42 AM
I didn't except so many of you to lend an ear or to give me your thoughts and help about in this situation, you guys dont know how how much i appreicate every one of you. I will definately look into what you all are saying. I'M SO THANKFUL I FOUND THIS SITE...so thanks each and everyone one of you, I will comment back again soon,to each one of you.... I dont have much time today...daughter is sick.
THANKS AGAIN!

camyskitties
05-11-2007, 08:17 AM
SweetRumble:

I am in the same boat as you with no insurance. It is difficult to get the care I need since I have to pay for it all myself. Jody recommended a couple of sites to go to to find low cost or free clinics. I went on and found one here locally. Maybe she will see this and post it again. If I can find my post where she told me about it, I will put it on here for you. Or maybe you can email her.

But she also told me as everyone else did, not to get discouraged because stress will make it worse and I know that is so true. Take care...

camyskitties
05-11-2007, 08:20 AM
Hi, me again:

I looked back at the original post where Jody told me about the free clinic. The site she listed for me was only for North Carolina. Maybe you can research on the web to see if there are any ones in your area. Good Luck, wish I could be more help.

MARYCAIN
05-11-2007, 10:27 AM
Edited - the link I posted wouldn't work - will try again.

MARYCAIN
05-11-2007, 10:29 AM
Here is a link to the national free clinic directory


http://medkind.com/Scripts/Modules/Module6/A1.idc?Code=

If none of those locations are anywhere close to you, please send me a private message with your location, and I will see if I can locate anything in your area.

IloveHistory
05-11-2007, 12:24 PM
Hi Sweet Rumble!

I am SO sorry to hear that your daughter is sick! :( Please know that I will pray for her speedy recovery and sincerely hope that she feels better soon!

Keep well! :)

camyskitties
05-11-2007, 01:10 PM
Yes, I hope your daughter is feeling well too. How old is she? My daughter is two!

mnjodette
05-11-2007, 06:56 PM
Marycain, that's a great (and important) link. Maybe it should be posted on the "links" forum as well. There are so many out there with little or no insurance, and it can be devastating. Thanks for the post.

Jody

MARYCAIN
05-11-2007, 09:37 PM
Jody, I posted a link to that and some other directories on the Links forum. :)

SweetRumble
05-11-2007, 11:30 PM
Thanks for all that replied back to me....

Ruth1980: Thanks for the welcome....and yes, I see that everyone is good at replying and supporting one another....and that's more than anyone could ask for.

camyskitties: Thanks for your support, I would really like to talk to you sometime, I've never talked to anyone with DLE...so I would really like to spend alittle time talking to you, if you dont mind. And yes I use CoverBlend? It's good to use to cover scars but it hurts like heck every night to wash my face when most haven't scared over yet....I'm trying to find one about the same but not so heavy. And yes...i use sunscreen (DONT LEAVE HOME W/O IT) . I think we may have alot in common on how we feel about dealing with DLE. I hope to chat with you soon..thanks again for your words. Oh, and I will go and check out that site you recommened..asap. I'll let ya know what i found, hopefully something close. thanks also for the get well wishes for my daughter....she is 8 and i also have a son who is 10....your daughter is 2, what a sweet age.

IloveHistory: Thanks for the welcome, I really appreicate it. I have this site as my HOMEPAGE now. Thanks for the prayers for my daughter thanks exactully what she needs and thank you for doing so. Many thanks.

Saysusie: I did check with a few health insurance places...and the cost is so outrageious...I did try for Cobra also, but they say the never recieved my info. and then it was to late to do anything, they pretty much said i was screwed, of coruse, in a nice way. But I am definatly looking around for something, I do appreicate your helpful advice and all, so thank you.

wombat: I will definately look into that product, anything to help the soreness/itchiness/inflammation, is worth a shot, so thank you.

MARYCAIN: I will do...Thank you so much, will get back to you ASAP!

Saysusie
05-13-2007, 07:51 AM
How is your daughter? I hope that she is doing better.

Saysusie

SweetRumble
05-13-2007, 04:01 PM
My daughter is doing alot better, thank you for asking :D

Saysusie
05-13-2007, 08:30 PM
Good...so happy to hear it. :lol:

IloveHistory
05-15-2007, 01:19 AM
Hi Sweet Rumble!

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

Keep well! :)

mnjodette
05-15-2007, 05:47 PM
Marycain, thanks for posting those links. I passed them on to my colleagues at work, and they were very appreciative of the info!

SweetRumble
05-21-2007, 09:20 AM
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.

Saysusie
05-22-2007, 08:42 AM
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

SweetRumble
05-22-2007, 10:54 PM
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

camyskitties
05-23-2007, 04:37 AM
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. :)

Saysusie
05-23-2007, 09:57 AM
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

camyskitties
05-23-2007, 10:19 AM
Amen to that Saysusie!

SweetRumble
06-11-2007, 10:58 PM
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?????