Newbie...looking for support in Texas
:? 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.
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
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!
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.
Welcome to the Forum! I'm really glad that you found us!
Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!
Thanks so much......
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.
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
Re: Newbie...looking for support in Texas
Originally Posted by SweetRumble
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.
Thank all of you ....
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.
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...