Question:
Melissa; I know and understand your frustration. I am 40 had Psoriosis since 1995 when a sudden onset hit my face in the form of a butterfly rash that was blood red. I am now undergoing UVA narrowband light therapy for my Psoriosis that has covered nearly 80% of my body. My wife has been my biggest supporter thru all this and continues to be as we journey into the 2nd level of treatment. I can only tell you to hold tight to the love of you family and especially your husband as you fight this thing. He will be your rock and support. And most of all, stay in touch with us here on the newsgroup. We know what you are going thru and understand the emotional stress that goes with it. Stay focused and most of all don’t give up the fight. Cheers, Mark SC – Hide quoted text — Show quoted text – I’m a 26 yr old mom of a wonderful 2 1/2 yr od little boy named Chance. i’ve had psoriasis bad for about 8yrs or so. it’s pretty muck all over me. my scalp, legs(bad), arms(bad sometimes), back(in spots), stomach(in spots), chest(spots), for head(sometimes). i’m lucky so far that it’s not on my face. most people don’t even know i have this in the winter when i wear long sleves. i have a great husband that says that he doesn’t even see my spots as i call them. but the thing is i see them and they bug the hell out of MEEEEE. i’m not sure what to say because the only people that hear these thoughs in my head are me and god at night when i pray for a cure and that my baby never has to feel the way i do. i don’t know anyone with sp that i can talk to or even cry with so if there is any onethat would like to talk and share there feeling please e-mail me. right now i’m dealing OK. i’m useing LYDEX on my arms and leg. the medicine alone doesn’t work so i wrap up in cling wrap at night and that has made it disappear on my arm and made my leg not so red and softer. although i hardly sleep at night. when it’s not so visable to the world i can sometimes forget sometimes. melissa
Response:
when a sudden onset hit my face in the form of a butterfly rash that was blood red.
I hesitated before posting this because I do not want to worry anyone, but if you have a "butterfly rash" on your face, you should have a doctor, preferably a rheumatologist rule out another autoimmune disease, Lupus. It is often listed as the first symptom used to identify the disease. Since you are already seeing a dermatologist chances are you do have psoriasis and there’s nothing to worry about,( except for the psoriasis of course!) but just in case you, or anyone reading the board has this rash and assumes its psoriasis, it may be a good idea to look into Lupus, just for piece of mind. Good Luck, Ava
Response:
Hello Melissa – hang in there and get on with your life as best you can. I also went through all your symptons -i felt so bad about myself that i partly withdrew from my interests and friends to eventually been so misserable and self conscious about my looks and what i thought other people were saying about me. Only for the love of my wife and two kids 8 and 3 i eventually started to get back into reality again and let people know that i had a skin disease and that it wasnt contagious and i was still the same person. It is still hard stripping of in the gym or beach without people staring at you but if it wasnt psoriasis it could be something else. So i guess i have learned to live with it and try my best to control it but it does get the better of me at times especially my scalp – awful embarassing going to the hairdresser with all those flakes all over the place. Well Melissa best of luck to you and have a good christmas. Paul – Hide quoted text — Show quoted text –
Response:
Melissa, Welcome! As usual, Lindasham has summed it up all very well. You have a lot of friends here and there is a great amount of useable information… Irv—in Alabama
Response:
I’m a 26 yr old mom of a wonderful 2 1/2 yr od little boy named Chance. i’ve had psoriasis bad for about 8yrs or so. it’s pretty muck all over me. my scalp, legs(bad), arms(bad sometimes), back(in spots), stomach(in spots), chest(spots), for head(sometimes). i’m lucky so far that it’s not on my face. most people don’t even know i have this in the winter when i wear long sleves. i have a great husband that says that he doesn’t even see my spots as i call them. but the thing is i see them and they bug the hell out of MEEEEE. i’m not sure what to say because the only people that hear these thoughs in my head are me and god at night when i pray for a cure and that my baby never has to feel the way i do. i don’t know anyone with sp that i can talk to or even cry with so if there is any onethat would like to talk and share there feeling please e-mail me. right now i’m dealing OK. i’m useing LYDEX on my arms and leg. the medicine alone doesn’t work so i wrap up in cling wrap at night and that has made it disappear on my arm and made my leg not so red and softer. although i hardly sleep at night. when it’s not so visable to the world i can sometimes forget sometimes. melissa
Response:
Hi Melissa I echo Linda’s comments. Remember there are lots of people here who are willing to listen to you as you voice your frustrations about psoriasis( as long as you are willing to listen to us too). Hang in there and enjoy your beautiful baby. He is at such a wonderful stage. Try not to worry too much abouthim getting it. In my case at least, stress and worry cause the psoriasis to flare. Thanks Linda for putting all those excellent references into one post. I’ve saved your post for future reference. Happy holidays Jeri – Hide quoted text — Show quoted text – I’m a 26 yr old mom of a wonderful 2 1/2 yr od little boy named Chance. i’ve had psoriasis bad for about 8yrs or so. [snip] but the thing is i see them and they bug the hell out of MEEEEE. i’m not sure what to say because the only people that hear these thoughs in my head are me and god at night when i pray for a cure and that my baby never has to feel the way i do. Hi Melissa — It sounds like you’ve said it all pretty well! This is a great group for discussing how it feels to deal with P — some have it severely, some mildly, but everyone’s gone through at least some of the same things you’ve mentioned. In case you’re not sure where to find information, here are some links that should help you out: http://www.psoriasis.org/ The National Psoriasis Foundation.. A non-profit advocacy group for people with P. It offers tons of information and help. http://w1.2380.telia.com/~u238000263/flaker/docs/index.html Aase Marit’s psoriasis site http://www.flakehq.com/ Ed Dewke’s psoriasis site. Both his and Aase Marit’s sites are great for helping anyone with P to feel less alone. They both offer great tips, support and fun (sounds weird to hear fun mentioned in the same sentence as psoriasis, doesn’t it?? Still, it is possible to get to the point where you can laugh at it, at least sometimes). http://www.pinch.com/skin/ Ed Anderson’s site. Very helpful if you’re searching for medical info — you can link up to a lot of resources through it. Also you can find a guide for this newsgroup there, and also Ed’s "Hall of Pshame," a great way to read reviews of various remedies that some recommend for P — it’s always nice to get a *second opinion*! Also, if you get to the point where you’d like to delve more deeply into psoriasis and get some books to read about it, Jerry J. (another person who posts) has a site that links up to some of the big (trustworthy!) bookselling sites on the net. The nice thing about this page is that any time books are bought through there, a percentage of the sale is donated to the NPF (Jerry doesn’t make any kind of profit from this). http://www.jhj.com/pbooks/ i’m useing LYDEX on my arms and leg. the medicine alone doesn’t work so i wrap up in cling wrap at night and that has made it disappear on my arm and made my leg not so red and softer. Melissa, are you doing this under a doctor’s supervision? Occlusion (cling wrap on the skin) combined with corticosteroids (I’m assuming you mean Lidex [fluocinonide] when you said "LYDEX") can cause some long term skin problems like skin thinning and stretch marks. The greater the potency of the steroid (Lidex is a high potency steroid) combined with occlusion can really increase your chances of this happening. Can you speak with your doctor about other treatment options? There are a surprising number of effective choices available for psoriasis. It’s scary to think about your son getting it — I know. My son developed it (his skin is clear right now, luckily). I tried to look at it from another perspective, though. I figure since I have it too, I’m in a good position to help him out; I can show him that it doesn’t have to rule your life. His having it made me grow up a little (just a little, mind you!). By the way, Chance is a pretty neat name; I like it! I’ve got links for chatrooms for people with P (and other resources!). I’m running out of time, though, so if you’re interested in them let me know and I’ll send them to you. Anyway, I’m glad you posted — you are definitely not alone in this! – Linda
Response:
I’m a 26 yr old mom of a wonderful 2 1/2 yr od little boy named Chance. i’ve had psoriasis bad for about 8yrs or so. [snip] but the thing is i see them and they bug the hell out of MEEEEE. i’m not sure what to say because the only people that hear these thoughs in my head are me and god at night when i pray for a cure and that my baby never has to feel the way i do.
Hi Melissa — It sounds like you’ve said it all pretty well! This is a great group for discussing how it feels to deal with P — some have it severely, some mildly, but everyone’s gone through at least some of the same things you’ve mentioned. In case you’re not sure where to find information, here are some links that should help you out: http://www.psoriasis.org/ The National Psoriasis Foundation.. A non-profit advocacy group for people with P. It offers tons of information and help. http://w1.2380.telia.com/~u238000263/flaker/docs/index.html Aase Marit’s psoriasis site http://www.flakehq.com/ Ed Dewke’s psoriasis site. Both his and Aase Marit’s sites are great for helping anyone with P to feel less alone. They both offer great tips, support and fun (sounds weird to hear fun mentioned in the same sentence as psoriasis, doesn’t it?? Still, it is possible to get to the point where you can laugh at it, at least sometimes). http://www.pinch.com/skin/ Ed Anderson’s site. Very helpful if you’re searching for medical info — you can link up to a lot of resources through it. Also you can find a guide for this newsgroup there, and also Ed’s "Hall of Pshame," a great way to read reviews of various remedies that some recommend for P — it’s always nice to get a *second opinion*! Also, if you get to the point where you’d like to delve more deeply into psoriasis and get some books to read about it, Jerry J. (another person who posts) has a site that links up to some of the big (trustworthy!) bookselling sites on the net. The nice thing about this page is that any time books are bought through there, a percentage of the sale is donated to the NPF (Jerry doesn’t make any kind of profit from this). http://www.jhj.com/pbooks/ i’m useing LYDEX on my arms and leg. the medicine alone doesn’t work so i wrap up in cling wrap at night and that has made it disappear on my arm and made my leg not so red and softer.
Melissa, are you doing this under a doctor’s supervision? Occlusion (cling wrap on the skin) combined with corticosteroids (I’m assuming you mean Lidex [fluocinonide] when you said "LYDEX") can cause some long term skin problems like skin thinning and stretch marks. The greater the potency of the steroid (Lidex is a high potency steroid) combined with occlusion can really increase your chances of this happening. Can you speak with your doctor about other treatment options? There are a surprising number of effective choices available for psoriasis. It’s scary to think about your son getting it — I know. My son developed it (his skin is clear right now, luckily). I tried to look at it from another perspective, though. I figure since I have it too, I’m in a good position to help him out; I can show him that it doesn’t have to rule your life. His having it made me grow up a little (just a little, mind you!). By the way, Chance is a pretty neat name; I like it! I’ve got links for chatrooms for people with P (and other resources!). I’m running out of time, though, so if you’re interested in them let me know and I’ll send them to you. Anyway, I’m glad you posted — you are definitely not alone in this! – Linda
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