Re: Re: How does p affect your social life?

[Guest guest]

HI this is in NJ, i have psoriasis on my face , my hands, arms leg and

no way it can be totally concealed. I get stared at and pointed at all the

time and go from good days, i dont mind to days i feel like a mutant. Just

divorced and wanting to date again, is a scary thing,will anyone want to touch

me.

But this summer i said, who cares and wore tank tops and my hairdo covers a

bit on the face but gotta live, so i do. Thanks for all the info and support

you guys give.

[Editor's Note: This (PA, primarily P, & social lives) is a subject which we do

not discuss all that much--certainly not in proportion to its significance. I

doubt any of us (except in the blessed temporary absence of visible [to others]

psoriasis) have never modified our actions due to the presence of visible

lesions. (When is the last time you went to the beach or a public pool?)

, it sounds like you have reached a point where you--at least some of the

time--act precisely in accordance with your desires, without regard to the

obvious presence of your psoriasis--and, without regard to what others will

think. I for one find that admirable. More than that, it's inspirational. I may

intentionally recall your attitude from time to time, especially if there is

something I would really, really like to do, and I find myself about to NOT do

it--for the obvious reason.

It's understandable--certainly by us--why we are, in all likelihood,

under-represented in the world's nudist colonies. I don't think we should beat

ourselves up about it (i.e., not putting ourselves at risk of ridicule,

suspicion of communicable disease, etc.). Is it some sort of weakness or defect

that we hide our P? I think it's as normal as can be. (Which is NOT to say that

it isn't a definite plus, to, at least from time to time, be like .)

Perfection is in remarkably short supply in this life; if we can accept our

(largely to fully unavoidable) imperfections, it isn't too much to (implicitly)

ask others to do the same--at least to the degree that they not cause or promote

offense, at our expense.

Lastly, regarding PA and social lives, alludes to dating and (my addition

here) " intimacy " issues-- that point at which it doesn't matter where the P is,

odds are it will be encountered--and how to deal with all of that.

I think it would be useful for us to begin, or perhaps I should say continue and

enliven, a dialogue on these issues.

Meanwhile, I'm going to think about how I can be a little more like , now

and then. :-)

D.]

[Guest guest]

hi, its susan again, i'm not too emotional- holidays or lack of meds but what

nice things you had to say in reference to my letter, made me all mushy.

Happy Holidays

[Editor's Note: Hi, ; Thanks--I'm pleased you appreciated the ruminations.

I hope we'll hear more from you soon. The only negative, regarding your posts, I

can think of is, they're just too darn short :-} I for one look forward to

hearing more from you: I sense there lurks someone with clever wit, ease and

dexterity with the language and a beguiling sense of humor.

On the more serious side, I wonder what your thoughts are on the following: Re

dating issues, I wonder how many of us are single, and whether it might be

useful to ever do one of those " live chats " , or something else, on the greater

topic of being single, and without significant other, and desiring to see if

there is someone out there for us... (I've never participated in one [live

chats, not sig others], and for that matter, seem to have enough on my hands--or

fingers--in trying to follow Instant Messaging on AOL, as it seems I always wind

up having two [constantly changing] conversation threads going at once, and what

I just sent hooks up with what we're not talking about, now...)

Well, here it is, 1:10 AM on Christmas Day, so you can see what a life I've got

going...Happy Holidays to you!

D.]

[Guest guest]

,

I liken having P and PA to being gay in America. For many people, a

tremendous amount of energy is spent living in fear of being discovered and

hiding

parts of ourselves that we cannot change. It is hoped that over time, we learn

to realize that the people who should be ashamed are the people who wallow in

their ignorance and fear of things they do not understand. Those of us who

were born different should strive to be the best we can be. If we do that, we

have much to be proud of and we should hold our heads high anywhere. The way I

look at it is that God doesn't hate people who are different - people do.

For those of us living with P and PA, that means learning to let the love in and

the self-loathing out. As the song says, " I am what I am " . If we strive to

be good people, kind of heart, generous of spirit, forgiving of nature - we

are also the best anyone can ever hope to be. Wow! Recognize any of the people

here? I do.

Kathy F.

[Editor's Note: Hi, Kathy...Reading you loud and clear: I agree with everything

you say.

I had my first experience with discrimination (against me) in the late

sixties to early seventies. It was such a mild case, too; let me tell you about

it (kinda funny, now). I grew up in South Florida. When I was growing up there,

it was Florida as it used to be-- " cracker country " , redneck, bible-belt, Klan

country, outside tourist areas. (Miami was the only " cosmopolitan " ,

modern-thought city, as Atlanta was to Georgia). Our official high school

" mascot " (the guy/gal inside a Eagle, Wildcat, whatever) was, literally, a guy

wearing a white sheet over his head, with eyeholes, waving an Confederate flag.

(He was supposed to be the " spirit " of Ft. Lauderdale High. We were utterly

oblivious to any thought of racism, by which I mean we were unaware of our own

tacit discrimination--the drinking fountains the bathrooms, etc., had " always "

been that way, hadn't they? The school was all-white, due to illegal, yet widely

practiced, gerrymandering by the school board.

Anyway, it's against this backdrop, a few years later, that I had this

experience: Some friends and classmates and I were back in Lauderdale for the

Christmas holidays, and hungry for lunch. We were all politically active on

campus at U. of Florida, and looked like it: long hair, maybe love beads, I had

on a (1) " Frodo Gave His Finger For You! " button and a (2) NAACP Youth & College

Division Freedom Fighters button; Freaky Fred was wearing a silver peace symbol

lapel pin and paisley fruit boots, and so on: I think you have the picture.

We headed to the Sweden House, a location of a chain of all-you-can-eat

Smorgasbord restaurants, where you would sit down, a waitperson would take the

custom prepared, waitperson-served portion of your order, and get your beverage.

We went in, took an open table, and waited. And waited, and waited. People who

sat down after we did were served. We attempted to catch someone's eye; no luck.

Now, they couldn't have missed, or overlooked, us; there were 5 of us, at at 6

'1 " and 215 lbs, I was the smallest of our group (the biggest, Little Tony,

whose real name was Tony Little, so of course ;-}, was a 6'8 " 265-lb ex-Green

Beret and member of Viet Vets Agaist the War).

We were left there--with a few comments to the establishment in general, but

nothing really raw. It actually took us a while to figure out; and our suspicion

was validated when we were leaving: one of the " greeters " , a sympathetic,

pleasant-faced young woman standing apart from the others, out of eye-shot of

the managers, made a hair-cutting, and then a what-can-you-do, gesture, to us as

we left.

Boy, I've gotten long-winded on this; all I wanted to do was agree with you. I

apologize! Anyway, my point here was that I remember how I, how we, felt after

this. It was an incredibly minor discomfiture. There were plenty of other places

to get a bite. And then it occurred to us: Look at how irritated we were at

being treated that way. Imagine if " they " , whichever " they " we're addressing

now, were depriving us of something more meaningful than one mediocre restaurant

location. And not only that, but what if--unlike the length of one's hair, which

is elective--we were being deprived of equality based on something (color,

height, sexual orientation, you name it) about which we could do nothing? What

then?

Kathy, thank you for sharing the thoughts in your post, and for reminding me why

it's important to maintain our justice, fairness, and honor.

D.]

, it sounds like you have reached a point where you--at least some of

the time--act precisely in accordance with your desires, without regard to the

obvious presence of your psoriasis--and, without regard to what others will

think. I for one find that admirable. More than that, it's inspirational. I may

intentionally recall your attitude from time to time, especially if there is

something I would really, really like to do, and I find myself about to NOT do

it--for the obvious reason

[Guest guest]

In a message dated 12/24/2003 6:31:43 PM Eastern Standard Time, SQFoxx5 writes:

> following: Re dating issues, I wonder how many of us are

> single,

Hi and ...just to weigh in, I am also afraid of the whole dating

thing...I split up with the guy I was with through the time of my diagnosis, and

he loved me even with nails falling off, rash on my face and stomach, you name

it. I worry that someone else might not be so understanding, or that they also

might think I am some kind of hypochondriac, because the illness does really

impact so many aspects of my life...

[Ed.Note: Hi, ; OK, that's three of us...and I think I ran across at least

one other. I think this is a topic worth exploring. Maybe we should send out a

questionnaire (I'd be willing to do that), and see what the level of interest

is. (I don't see it being a seperate site; it fits within our " charter " .) Since

I'm working on two other projects connected with the group, plus the moderating,

I could help with a singles group, but I just couldn't take on a " point person " ,

or facilitator, role. We'd have to see if there is anyone out there willing to

take on that role, or there's no point, in my view anyway. (Who knows? Here's a

couple issues, off the top of my head: (1) There are a bunch of internet singles

groups; a good project would be finding them all (i.e., at least those of

sufficient membership), and finding out if any of them have " arrangements " , or

programs, for " handicapped " (which is not really what I mean, but I know you

understand); another project might be to see if we have enough singles to see if

there are any potential matches within the group... just thinking out loud. And,

of course, within our group we could visit our special issues that separate us

from the married members.

Anyway, let me know what you think.

[Guest guest]

Hi, its , i think its a terrific idea, 1) a conference of some type to

meet, i d be there and or 2) a group within our group to find someone , that

would be wonderful. I am so tired of explaining what psoriasis is and how its

not catching. Tired of explaining the fatigue and that its not laziness. Someone

to love that understands is like a dream. Lets keep exploring this.

[Editor's Note: Great! I think ( & please let me know what you think) the first

step is to find out how many people are interested, and to get some basic

demographic information.

Would you be willing to write a post explaining that we are doing an exploratory

survey for the purpose of determining whether there is interest in participating

in a singles social group.

Let me know what you think here; it seems to me we need to know how many members

would participate, before we go any further--i.e., whether it's something we can

keep within the group, or do we need a new board; should we correspond with

other similar websites, etc., to see whether it's do-able as a joint effort, an

so on.

Your thoughts?

D.

[Guest guest]

At 07:28 AM 12/27/03, you wrote:

>Hi and ...just to weigh in, I am also afraid of the whole

>dating thing...I split up with the guy I was with through the time of my

>diagnosis, and he loved me even with nails falling off, rash on my face

>and stomach, you name it. I worry that someone else might not be so

>understanding, or that they also might think I am some kind of

>hypochondriac, because the illness does really impact so many aspects of

>my life...

Hi guys,

I'm also single, and I think I'm fortunate in that I don't have severe P so

that aspect of my disease is not obvious, visible, or a turn-off to

prospective suitors.

Having said that, the PA still gives me a lot of concerns. Like

said, I also fear that people might think I'm a hypochondriac because of

that whole " but you look okay " factor with the arthritis (unless I'm really

visible swollen or limping, which isn't all that frequent on my meds right

now), or that they won't understand some of my limitations due to either

physical issues or fatigue related to the disease and/or meds.

It's been a *long* time since I dated (long story there) and I worry a lot

about how I will ever find a loving and understanding mate when this

disease is such a real part of my life. Heck, I had trouble finding anyone

before I got PA -- I just wonder who would want me *now*, if they didn't

then, you know?! :-(

[Guest guest]

Well, I guess i've developed a " rhino hide " I don't cover it all up in the

summer...i just can't take the heat. I still can't go to the beach and have

people stare or walk away from me...but in street clothes...you take me as is. I

don't hide it. And if people quiz me i tell them the truth....and say...I just

call it my " rot " or my " jungle rot " ....i try to bring humor into a hard

situation, to endure. I am getting some relief from the scales with Enbrel...as

well as the benefits for arthritis. Hopefully this summer i can enjoy going to

the beach. But then i'm very fair, so have to watch too much sun. " AIN'T LIFE

GRAND " ? I just try to be me...and not cover it up.

Donna in Mich.

[Guest guest]

To all,

First off, having psoriasis since the age of 5, I feel like I

should answer this question te best and honest way I can. YES, P. does

affect ones social life if you have P. as bad as I did and still do. It

sure was not easy growing up with psoriasis. Teen years was bad for me

cause I loved sports. I had at that time around 30 % coverage but I

would not play basketball on team because of having to wear shorts. I

have never been in remission and find each year brings on more psoriasis

and other problems. I did have friends and I never felt rejected from

anyone. After school then I went to work and psoriasis went wild. I

guess stress played a part in this. Well, I then became my worse enemy

because I came down on myself hard. I put thoughts in my mind that there

was no body out there that would or could ever love me. I dated, but

would not ever let my wall down I had put up to love or being loved. I

lost many, many good and precious years past me by. I had close friends

and they are still around me after 30 some years. Psoriasis is not a

big thing for them except they hate that I have to suffer with it. I

then found someone I loved. He had health issues and so I let my guard

down and we got married. I figurd

we could work thru his and my problems. WRONG !! He was Bi-polar and

with my P and Pa it became war. I fell into a deep depression and

wanted and need out of the marriage. Finally I got out of the marriage

but he had really done a number on my mind. He told me too many times

there was no one out there that wold ever love me because of my skin. I

was about 95% covered by then. I beleived him. I moved back home to my

Moms and I lived in my darken bedroom for almost one year ! Had it not

been for my special friends would still be there I bet. My friends

pulled me out of my room and I mean pulled me out ! They made me go

places with them and I hated it. I was not a vey happy camper, and it

sure was true friendship they had for me because you talk about moods I

was in. I just thank God for my true friends now. On love, well I had

gave up. I wanted and needed someone but afraid of the rejection

because of my skin. I prayed and ask God if I was meant to never have

love then please take away my desire to be loved. God didn't ! Instead

he sent my way a wonderful man. He knew about my skin and is not one

bit taken back by it he said,even tho sometimes he has to walk thru

scales I leave just walking accross the room. Even tho I still get

moody when I am hurting from the P or PA.

What I want to get across to you is don't sell yourself short. If

they love you they love you from the inside not the outside. Give love

a chance, we all have to kiss many a frog until our prince or princess

comes along. There are very understanding people out there who will

love you if you only let them. You will know when the right one comes

along and you will fill comfortable enough to share your self with and

if they really love you they will understand and want to share the rest

of their life with you. Zoella

[Guest guest]

oh thank you so much for sharing, susan in nj

[Guest guest]

Julirose,

Thank you for the sweet email you sent me. We all suffer so much

and yet we hide our pain and selfs from the world. I remember how many

nights I would pray to God for the right soulmate to have. I even

thought if he was blind the better because then he would not see my

skin. I look back and see how stupid I was because if someone falls in

love they really love the inner you. I knew I didn't have much to offer

on the outside but I had alot to share with the real true person I am.

I feel so blessed God answer my plea and was giving the best to be in my

life to share with. He is a High School teacher so that meant I had to

go to all school activies, I even still go to proms. He is class

sponsor. just cover my bode up and enjoy. I know it is hard on him

seeing me in pain cause he is very healthy and has never been around any

one like me with so many health problems but he does good. When I am

really bad or get a bad report from my Dr. he holds me and cries saying

I don't want to ever lose you. Sometimes I don't think it is fair to

him having to put up with me but he tells me if I ever have to be in a

wheelchair he will push me around. He helps me DR. my skin with 80%

coverage and never ever complains [ except if it is during a football

game!] He helps out alot and even with my trail of scales he just never

complains. He tells me WoW, Zoella, you are all over the place here but

most of all you are in my heart.

There is hope for anyone. There is so much turmol going on in our

minds that no body would or could love us but please don't give up. I

cried many Holidays, and nights too but put it in Gods Hands and be

blessed. Zoella

[Guest guest]

zoella,

hi,

i read your positive letter. i have to offer you what

i have offered a few times before. take 4-6 weeks for

yourself. go to the dead sea in israel. you will be

amazed to realize what will the combination of the

sun, the sea, rhe atmosphere above the sea, the black

mud and the solfure will do to you. after 4 to 6 weeks

weeks you will probably get put of there brown as

chokolate. cleaned off psoriasis. all without anr

medication. you use only baby oil to absorb the sun.

buy the way, sun beams do not cancer in the dead sea.

all the treatments are natural. and you relax there.

it is great. slowly slowly your body cleans. fantastic

filling.

arie

[Guest guest]

Arie,

Thanks for your email. I would love to be free to go to te dead

sea but money gets in my way. I have always dreamed of being able to go

there. Maybe someday my dream will come true! Thank you, Zoella