Random question or is it just me???

[OBIWAN]

Hey guys,heres an odd one for you...given that most of us im guessing have had p or its forms for sometime,i got to thinking about the things that effect how you feel about having it and what it maybe stops you doing.
I dont wear shorts,go swimming,show my body to the general public(not literally you know)lounge around the house in my pants-you know what i mean.
I was wondering if there are anythings that having p does not stop you doing and never would,things you are passionate about,maybe stuff that makes the p look stooopid???I love playing my drum kit,always have,always will i hope.but isnt it odd how i can play with my shirt off infront of others but wont take my daughter swimming??!!its like a comfort zone or something,i dont know....what do you think????

[LadyHawke9973]

It's not just you, however I don't really have any activities I'm passionate about that are better served with short sleeves, shorts, etc.

Though, I will put on light pants and short sleeved shirts to go play in the park with my daughter somedays. It depends on how I'm feeling about myself. Up until recently that's been a crapshoot. Now, I've no problem with it, however my P HAS been reducing to less noticeable status with my study med.

I hope we hear from more people who have activities where it's really appropriate to expose skin they normally wouldn't expose....what a great question!

[OBIWAN]

Its quite an odd one for me really,this may sound a tad strange but im happier sometimes to be less dressed in front of strangers eg walking round town etc than i am with my immediate familly!!EH? i hear you all say...eh indeed!!

[Geffy]

SWIMMING in public!! I love water. I do it anyway, but do I feel 100% comfortable? NO. I don't feel passionate about it, but I'd like to have the guts to wear a bikini at the beach or pool. That would make me nervous as heck. I truly believe it is a comfort zone issue and how you feel. There is nothing wrong with choosing to expose or not. I choose to expose as much as possible.

[nesielheum]

Hello Obiwan,
The psychological side of PS always seems to create lively conversation here. Personally, I do not have a problem wearing shorts, going swimming, or otherwise having others see me for what I am. a Psoriatic. On the other hand, my wife feels totally embarrased by my condition. So, I feel compelled to be tolerant of her feelings and I will often times wear long pants to summer picnics, and make other small sacrifices to make her feel more at ease. Personally, I am far more self concious of my expanded belly than I am with any of my scales. :eek:

[OBIWAN]

i can quite believe that!!my good lady is the same,feels a tad awkward when my p is on show,not that i go out of my way to show it,i dont like to make her feel uneasy so dont really talk of it or leave myself open to verbal attacks.i guess its quite easy to assume what people may be thinking.tell you one thing thats a bugger about having p........i have a few hand drawn tattoos and a couple are invaded by the evil p!!!!now thats a bummer!!!

[baldwin123]

My p comes and goes, but my knees are usually the most affected, and I do not like to wear shorts, and I tend to avoid skirts or dresses which show my knees- but I have NO problem wearing shorts or bathing suit to the beach to make sand castles with kids, or playing in the community baby pool with my youngest...I guess I figure people are going to see my kids and the fun they are having more than me? And it feels soooo good to do these things on a hot day! Maybe in your case, you know the music is good (I am sure it is!) and that takes the pressure off how the p looks? You know people are seeing more in you than your skin? Hope you are able to enjoy swimming with your daughter some day...! Take care!
Jen

[Kimbercat]

This is a bit off topic, but it pertains to the reactions and embarassment of your significant other in public about your exposing of your psoriasis. I've never been one to cover mine up, even at its worst, mainly because I felt more comfortable without clothing touching some of my irritated areas. Quite often, I could feel that this embarassed my husband and children, who really didn't understand the disease, and didn't really want to listen when I tried to explain it.

This past year my husband's attitude started to slowly change (possibly because I'm 99% clear), and I was able to convince him to attend the local screening of the documentary video about psoriasis and psoriatic arthritis made by Fred Finkelstein. That film made a major impact on my husband, and he finally understands at least a portion of what we go through. I'm eternally grateful to Fred and everyone else involved in the making of this incredible film.

If you have a chance, and think something like this might help your friends and family gain this same understanding, you can order a free copy by registering at Beyond Psoriasis (http://www.beyondpsoriasis.com/about_skin_on_fire_film.jsp). If you don't want to register there, you can also purchase the dvd at Fred's website, "My Skin's on Fire" living with psoriasis (http://www.skinfire.org/) for $20.00.

Good luck, and I hope everyone can help change at least one person's attitude among the general public. Every step we take puts us one step closer to safe and effective treatments, and eventually a cure for all of us who suffer, as well as our loved ones who suffer with us.

[Stillworking]

Before developing PA I would go square dancing, you know the short full skirts, twirls and all. as I was 75% covered, I supposse it was rather shocking for those who were seeing me for the first time. It really made me feel that looked the same as everyone else in costume.

[ademas]

I'm a bit self-conscious about it, to be honest. I wish I weren't.

My nails are affected, and I find myself hiding them sometimes when I pay for something, or go out to dinner--just in the way I hold my hands.

I also never wear sandals that don't have my toes covered. It is to protect my toes, because the PA is very painful, and the nails are weak and brittle, and if I stub my toe it hurts like the dickens. But to be honest, my toes are so ugly, I wouldn't wear sandals even if pain wasn't a factor.

I used to enjoy massages more frequently than I do, and I know that has to do with a tough spot on my back.

By the way...where are all you people???? I work in a public setting, and I go about living my life, and I never see anyone with nails like miine, or plaque.

I do notice things like people wearing long-sleeves and long-pants on a very hot day, and wonder if...

I once had a customer with eczema on her face, and I asked her how she was doing, and she was very touched that I said something. She mentioned how most people just look horrified and then avoid looking at her and making eye contact. I told her about my P and PA and we had a wonderful talk. I swear, we were both almost in tears at one point. It was a real connection.

[Geffy]

I was thinking last night about what actually makes me nervous about exposing P. I had mentioned earlier that I will go swimming in public without problem. That is exposing a lot in a bathing suit, but really why not the bikini? I think the difference for me is whether the outfit I am wearing is supposed to be sexy. A bathing suit is just a suit, but a bikini is sexy. Not that a one pc suit can't be sexy, but a biniki is like I am TRYING to be sexy. It is the same with any other outfit too such as a short skirt. Just a skirt or a Oh WOW skirt?

Have you ever walked in the mall and saw someone trying to pull off a hot outfit and think to yourself "What WERE they thinking when they looked in the mirror"? That's how I imagine people think in their head if I have a outfit on that is supposed to be "hot".

I haven't really had any family embarassesed by P. My husband neither. I had P and PA before we met. Maybe that makes a difference. There is always something embarrassing to me about them anyway that I never mention too :p If kids are embarrassed, I start joking about it.

Ademas, I have P in my nails. My toesy are the worst. I do hide my hands because I have had people think that I could give them fungus. Luckily it only the pinky and next finger over on my right hand. I hand strangers things like a magician taking out a palmed coin.

I hope someday no one will have to be embarrassed.

[OBIWAN]

well its great to know everyone here is soooo positive,not that i arnt but i think we all are a little conscious and down on the inside?!its great to here the answers to my post in that most who replied seem to just say to hell with it and go for it...thats easier said than done for me,if i was playing my kit all day everyday then maybe i would feel better....hmmmm???music as therapy anyone??!!

[Geffy]

well its great to know everyone here is soooo positive,not that i arnt but i think we all are a little conscious and down on the inside?!its great to here the answers to my post in that most who replied seem to just say to hell with it and go for it...thats easier said than done for me,if i was playing my kit all day everyday then maybe i would feel better....hmmmm???music as therapy anyone??!!

I don't think it is easy at all! It wasn't easy at first. I have had P since I was 8 or so and you have had it longer. I think it may depend on where you are coming from. It takes alot of self to truly TRULY believe that you are equal or superior the way you are, P and all.

Yes, why not music as therapy? Whatever works for you. Maybe a small step of exposing a tad more skin. However, maybe put on those headphones and think in your head that you are THEE drummer. Try not to look for people looking. It is YOUR time and you have all rights to walk down the street dressed like everyone else if you wish. Focus on your music maybe when you are out and about alone. Just don't focus on what others MAY think. Use the "force" of those drumsticks. :)

Just my .02 worth, but that has worked for me. It does take a long loooong time though.

[OBIWAN]

hey yeah,thanks.
so much of it is telling yourself to deal with the effect mentally and not to worry what others may think,i just seem to remember how as a youngster,you look at people with "abnormalities"that are visible as the yeuck factor,kids can be cruel and adults crueller sometimes.its a state of mind,very unlike alot of other physical problems.

[Geffy]

:p Why be normal?

[cjg]

I live in the hot, muggy deep south, and if I wear long sleeves this time of year, people are more likely to comment than if I just wear short sleeves and show my elbow P. I wear long sleeves usually, though, because many buildings (including the one I work in) have the AC going full-blast, and I'm cold-natured. So everyone gets used to seeing me in long sleeves. I have a little nail P, just ridges and pits (nobody would know it's P unless I told them), so I only wear my wedding jewelry and don't call attention to my hands, don't paint my fingernails. They look like I spent too long cleaning without gloves or something.

The only thing I'd really like to do that P prevents me from doing is to wear dark-colored shirts without worrying about my scalp P snowing all over the place. Also, I'd like to wear my hair up sometimes, but the scalp P unfortunately extends to my ears. I can't grow my bangs out because it extends beyond the hairline on my forehead. Oh well, I'm too old and wrinkled now to be without bangs anyhow! ;)

These are just small vanity-related things, so I can easily live with this. Mostly I'd just like to go a day without the infernal itching on some part of me.

[peggyb]

This evil p and my attitude about it have ruined my life. I'm not the same person I was ten years ago, right before it showed up. I'm 70% affected, and I have practically become a recluse, especially in the last year. I wear short sleeves and capri pants in the summertime because I can't stand the heat, but my hands, arms and legs are just covered in it. I'd never wear shorts or a tank top now. I went swimming for the first time in three years a few weeks ago, and it was hard to do. Swimming used to be my favorite thing to do in summer--I went all the time. I used to sing and dance and act in local community theater at least once a year--last summer was the first time I'd done anything for years, and the only reason I did is because I played a nun and I was covered from head to toe! The pa has taken away biking, bowling, and dancing. The only thing I do now that I truly enjoy is some karaoke now and again. Not trying to brag, but I guess I'm good enough at it that people look past it when I'm singing. I miss my old life. I miss me. I wish I'd come back. If it were not for my son and husband, who are two of the best people I know, I might not even be here writing this. I can't let my son grow up without a mother. But I'm not much of a mother. I'm not setting a good example for him at all. I know p and pa can't kill you, but as bad as I feel every day of my life, I'm afraid of what's going to happen to me. Wow. I sure know how to bring a room down. Next!

[baldwin123]

You're not bringing the room down! You are still YOU, and someday soon you will find what works best for you to clear the p and manage the PA so you can do all the things you love to do...wow, Karaoke! Wish I could sing! :)
Take care everyone!
Jen

[OBIWAN]

isnt it funny how when you read others peoples thoughts and you see their mindset you immediately sympathise with them as we suffer the same but to various degrees,the funny thing about it is that it doesnt make you feel better yourself.i sometimes go to the extreme of hating myself and my body and this makes me go into myself quite a bit,sometimes im just so antisocial its untrue but catch me on a good day and im the guy people have a laugh and joke with.i get scared that the downsides to having p will one day take over and who knows what will happen.im in the same boat as you peggy with the exception that im not 100% happy with what my wife thinks about me and the p,never have been.my main concern is how my girl will grow up seeing me and the way i am with it,and the examples i set her because of it.ho hum!!!

[carumba15]

I wish i had the strength of character many of you have written about.

Psoriasis has absolutely controlled my life since it appeared when i was 18. When my skin is bad i am a total recluse. Except for groceries and work, i don't leave the house. I have missed many Christmas dinners and social functions because of my psoriasis. My occupation is not what i would have imagined when growing up, but it was a choice i made because it has minimal contact with other people. My plans were to be a teacher, but i quickly nixxed that idea when i developed psoriasis.

I can get myself clear with methotrexate. Since i don't want to overuse it i would say my skin is acceptable 6 months of the year. My life revolves around psoriasis so i end up planning ahead for the upcoming year in terms of big events. Hawaii holiday in march ? Start the metho in January. Golf holiday in August...start the metho in June etc etc

Of course it is always a problem for relationships. I would really only be "available" 6 months of the year. Meet someone, then a few months later having to explain about my psoriasis. Most naturally say it didn't bother them , but i never totally believed that since it bothered me so much, and, i think would bother me if i didn't have psoriasis and someone else did. I am used to waking up with skin flakes scattered all over me and the bed but i cannot imagine what someone without psoriasis feels like waking up to that.

I can handle the itch and being uncomfortable, but the sight of it makes me sick. It is such an ugly condition. The look of revulsion people give when they see it is far too common. I still remember having a few spots when i was 18, and going swimming in our complexes pool. People actually left the pool, and later got the manager to talk to me, to see if i was contagious with something. I don't blame them. The ironic thing is if we go swimming, the person at risk is us, since we are much more exposed to bad things from other people, compared to other peoples risk of exposure to psoriasis...which is zero.

Very depressing post i know, but just trying to give an honest comment for the OP.

But, the light at the end of the tunnel for me, and i hope for everyone here. Like i mentioned in an earlier post, i am involved in the cno 1275 (sp) trial. Four weeks in and i am 90% clear. I do not have the words to describe it. I just saw Shawshank Redemption 2 nights ago ( for the 40th time, great movie), and when the old guy got released near the end and was very confused how to deal with the world ( because he was an "institutionalized" man ). That's what i feel like now. 26 years with psoriasis and i am just not used to the clear skin and the legitimate hope that this is the long term answer for me and everyone here. I am sure not used to throwing on a pair of shorts to go check the mail, and definetely not used to getting an invite out somewhere and looking at my skin to determine if i can go or not.

Peace



and clear skin :)

[OBIWAN]

wow,i think the more i post the more i understand that im really not alone with this,i felt so isolated in terms of people understanding how it makes you feel and how it can stop you doing things,its sooo hard to get people to understand!?dont know about anyone else but i read a little of myself in everyone elses posts,the good the bad and the ugly!!the comments not the people!hehe!!im so thankfull already of finding this board.HI,IM MARK AND I HAVE PSORIASIS!!!(that hurt!)