Question:
Hi all,
I noticed that we have a sudden abundance of newbies! This is so great, but I am having a hard time keeping track.:rolleyes: Must be hormonal.
So, newbies, please post the following information, if you would.
Name and location
Onset and current status of your p
Current medications
Something interesting and personal about yourself.
What you hope to get, and what you hope to give, to this board.
Thanks for humoring me. Your new friend....:p
Good morning,
I'm Mandy, 25 and from Germany. I have P since the age of 12/13. It began on my scalp and is still there plus elbow, spots on my shinbones, feet, shoulderblade and its all few weeks showing up on my right hand + underarm, staying there for a while and then disappearing again. As I said, its on my scalp since Day One and in the past years it began to get more and showing up all around along the hairline (forehead, etc) and that's what has caused me the most distress so far. I told Taryn already yesterday, that I was always one of the quiet ones and the P totally turned me into "Miss Shy, no one wants me anyway" during my teenager years (actually until recently).
I never really talked about it, cried my tears alone. It's only since January that I try to deal more "actively" with my P. Trying to talk, learn and inform myself, accept and live with it, instead of bottling every feeling up inside of me and shutting myself away from people. I tend to keep myself to myself, in general.
This change was actually caused by a friend that I met online 2 years ago. For 2 years I always "wanted" to tell him, but the fear of rejection or negative comments was stronger, comments that I've heard often enough the past 10 years. But then I just did it, told him first in a mail, later on the phone about my P. I tell you, when I saw that he replied to my mail, I was holding my breath, trying to guess his reaction. It's weird, inside of me I knew that his reaction would be okay, yet I was "afraid" to open the mail. My friend's blind by the way and has his own "daemons" so to speak, not the blindness itself, more what he had to go through since childhood with close to 40 surgeries and everything that comes with them. So in a very special way, he could understand many of my feelings.
But since I told him, things began to change a little bit for me. I still have often tears, even when I just write or talk about my P, but nevertheless this helped me more than to keep it all to myself. For the time that I did this, I always broke down sooner or later with all the sadness, anger, feeling of embarrassment and whatever else I have kept inside of me.
Okay, I better stop here. Have to hurry to catch the train :p
Take care and have a nice day everyone!
Mandy
Name and location - Amy - 28 - Upstate New York
Onset and current status of your p -
Have had it since I was 7, currently have it on scalp, elbows, knees, hands, feet, ears, little on arms and legs. P only gets white on knees, elbows and ears. Everyhere else is pinkish. I also was diagnosed with PA in 1997 - it affects my back, hips, ankles, wrists.
I am an old child - neither of my parents have p but my maternal grandfather had a little bit on his hands. My maternal grandmother had Lupus and some have said I could have gotten a bad chemical from her and it came out as p. As far as I know, I had strep and them bam! P was here.
Current medications -
None - ok, don't think I am nuts - I have Dovonex and Tazorac for my skin and Lidex for my scalp but I hardly ever use them. For me, Bath & Body Works Body Cream (not lotion) works better for me than anything else and for shampoo I use Head & Shoulders Intensive Treatment. When I was younger and had it alot worse I did light treatments, tar, everything time consuming and a pain.
For PA I don't take anything either. Just a pain pill when it gets bad. I will find out next week if I also have Iritis. (thanks to my PA)
Something interesting and personal about yourself -
Well, I didn't think this was so interesting until I started reading the stories on this board - I had no idea how badly P affected some people.
I have never let my P bother me. I wear shorts and short sleeves and I don't care what people think. The only questions I ever get is "Do you have poison ivy?" and "Does that hurt?"
I just say "No, it is Psoroasis" and that is the end of it.
A few people asking stupid questions will not deter me from doing what I want.
I am a very outgoing person and have always had a very active social life. It breaks my heart to read the stories of the teens that are recent p sufferers and what they are going through in school. I have had it for so long that by the time I reached hs everyone was used to it. It was never an issue in college either.
I guess I am lucky - but I also think it has a little to do with the fact that it has never been an issue for me mentally so maybe people notice that and move on.
I went to my GP yesterday and I told him a few stories about the board and how someone was refused entrance to the pool at a resort because of p and he went crazy. He thinks it is such a shame people are so ignorant. I travel alot (resorts and cruises)and I have never had anyone say anything to me about my p. I am more self conscience about the fact that I need to lose a few pounds.
I also have a wonderful boyfriend of 5 years - waiting for the ring...lol...and no children.
What you hope to get, and what you hope to give, to this board -
I hope to make some new friends and learn more about what life is like for others with p. I also have already learned alot about meds and treatments that I didn't know were available.
I hope to give some support to those that need it. Maybe offer a little advice when I can. I am planning to join as a member soon so I hope to be able to chat live with others.
Wow - that was alot - thanks PJ for posing the questions - I wasn't sure how to tell my "story".
Amy
I'm from India & have it since i was in high school. M father has it too. I've tried allopathic medication, ayurvedic & homeopathic.Homeopatic works best for me. I'm 25 years old , Male.
ByE!
Wow,
I am really impressed and touched by the responses. You are incredible.:cool:
Hi Mandy, I am so glad that you shared your story with us, thank you. I understand that even though it is written and not in person, it is no less difficult. In fact, I often find my written words more powerful than the spoken ones. Somehow it makes what I've said more real, and permenant. When talking about an issue as close to the heart as p can be, it seems to me you have taken a big step.
I did read your post to Taryn the other day, and knew something about your online friend. I did not know he was also handicapped. It seems that his acceptance of your p as ok was a major turning point for you. I am so pleased for you!:p Seriously, some folks never even get to that place. Hang around us long enough, we'll have you feeling sorry for all your poor body has gone through. That is different from feeling sorry for yourself, which is also ok in moderation, and only on odd numbered days. The evens are all mine!:rolleyes:
As far as the tears are concerned, they are ok. Reaching out to others, here and in your life will help to make you feel better and heal your heart. I doubt there is a person who posts on this board who has not felt those same tears.:(
Hi Amy , Thanks for introducing yourself. Your story makes me wonder if it is easier for those who get p at an early age. Not that I would wish it on anyone. But, you sound like you have such a healthy additude about having p. You mention that by hs you just didn't much care , it was not an issue for you, but you have concern for those with teen aged onset.
I think its great that you found non prescription products that work so well for you. Just stay away from the strep! :rolleyes:
BTW, the person whom was refused access to the pool was me:mad: . It was at the Hilton in Honolulu in 1980. Got a room upgrade, and my entire bill comped, but no access to the pool. Boy am glad that things have changed! You are fortunate and wise to have a dr with that sort of reaction to your stories. It is a good sign.
I look forward to hearing from both of you fine ladies, and perhaps more from vexal.
A most sincere welcome to the board!
Thanks for your welcome :)
You're right, to talk to my friend was a turning point for me. It was after years the first time that I told a friend directly what it is that I have and gave the name of it.
Those days were strange. Something inside of me knew, that he'd be okay with it, yet I was "afraid" of his reaction; perhaps because it were in the past also several times friends who reacted negative.
But he was in fact very caring and from that day on, he'd frequently ask me, how I am doing. Not just this kind of quick "What's up?", but how the P on my scalp or wherever is doing, what kind of meds I take, he asked me to mail him info's. Sometimes he'd search the net and tell me about treatments, asking me if they might be a chance for me ... all that, his willingness to listen to me and to learn, instead of quickly jumping to conclusions, meant a lot.
I got so many negative reactions in the past and at one point I was fed up with it and my thoughts were like "i might as well stay alone etc".
But after the talks with him, I changed my mind from thinking "if i tell someone about the P, s/he will react negative", to "why not trying to tell a friend, when i feel ok and give him/her a chance and wait for the reaction, instead of assuming that it will be a negative one".
When I told him about the feelings that I had during the past years, how I changed my behaviour in certain situations etc, he told me that he understood. He had to go through almost 40 surgeries and lost his sight at the end. He told me that you dont go through that for 20 years without having something left over from it. The blindness is no problem for him, but surgeries leave scars and he told me, that they are in fact what tortures him every day. He knows about wearing only certain clothes, or not going to the pool, the looks and comments from strangers ....just as example. So our cases may be very different, but the feelings we had, were often similar and I guess thats partly where our good understanding is coming from.
Hehe, I did it again! Found a way to avoid housework and cleaning, thanks to the messageboard :p
But I better hurry up now.
Mandy
I am not brand new, but fairly new, so I will do this.
I am 30 and live in Las Vegas, NV. I have had P for 9 years and it has very slowly gotten more and more. I have an appointment with a derm on the 8th of July (my first appointment ever with a derm for this.) My spotty and dotty (i guess guttate) P is spreading slowly and so I need to do it but I am embarrased. Also, I work in law enforcement, and it it getting to the point now that the p is in areas not covered by my uniform. I hope the derm can do something. I have only taken one medication from my family doc 3 years ago, he thought it may have been excema, but from pictures and such i think it is p. It was a steroid cream started with an E, but it didn't do anything. I hope I can learn something from board, or something can be done to contain P.
Name and location: Taryn, Connecticut USA
Onset and current status of your p: I had my 1st case of P just after I graduated from high school in 2001. I was diagnosed with Gutate, but I have patches of Plaque also. This is the 3rd time I have had it flare up. It always seems to flare up in the late springtime and go away in the early fall. Right now it is the worst it has ever been.
Current medications: I just moved to CT last year, so I don't have a derm yet and I need permission from my doctor to see one in order for my insurance to cover the visits. My doctors appointment is the 14th of this month. Hopefully I will get meds soon. My previous meds have been topical creams.
Something interesting and personal about yourself: I am married to a submariner in the US Navy, I have 3 ferrets, and I was born and raised in the same town in the same house in Montana and never even saw the Atlantic Ocean until 2002 (now I live about 5 miles away from it).
What you hope to get, and what you hope to give, to this board: I hope to gain confidence in myself and learn effective ways of physically and emotionally dealing with my disease; I want to meet other people that I can relate to and hopefully create lasting friendships with; and I want to be able to inspire someone else through my example someday.
Name and location: Brian recently relocated to San Diego
Onset and current status of your p: I had mild spots on my back & hands pop up around 23 or so, 36 now. Somewhat ironic - When I first started having symptoms I went to several doctors and none of them diganosed it for what it was, I heard everything from "ring worm" to "mild skin cancer"! I met a female derm at a bar one night and she out of the blue asked me what I did for my p., and I said "huh"? Anyway, it was mild to moderate until the last year or so (got divorced, changed to a "high-stress" job) and in the last 3 months it has just got out of control! As I'm sure you all are aware- I have been going thru all the head stuff that goes along.
Current medications: Have Dovonex (creme & ointment), Ultravate, and betamethasone. I travel extensively for work so I do not follow the treatment like I'm suppose too which sucks because the dovonex actually worked well when used properly. I'm pretty concerned now because it has gotten so bad that if I were to use it properly I would use 200 grams a week! I have an appt with the doc next week to ask about enbril or amevive. I am curious if anyone on the board can give me some feedback about the home UV devices.
Something interesting and personal about yourself.: I'm sorry to write a book here - but it really helped me out yesterday- I live in San Diego and I have a group of very active friends. I was invited to a bbq for the fourth. All these people are very much loyal beach goers and I know that they have been talking about bbq'ing on the beach for the holiday (big thing in S.D.) for about a month. When they invited me, I obviously turned it down for the obvious reasons. Now they have never asked me "what's wrong with your hands" or "why do you wear long sleaves in the summer", but about 2 hours after I told them no thank you, I got a call and was told "would you come if we bbq'ed at the park"? Let me tell you, I did'nt realize how good of friends I had till that very moment! These people have never even mentioned or acknowledged my p. To top it off, it is known that I am originally from Chicago and that I LOVE to grill- I was even asked to make the burgers. For a day that I had assumed that I would sit around the house - turned out to be an incredibly great day!
What you hope to get, and what you hope to give, to this board: I really can't answer that. Until recently I did'nt even acknowled to myself that I needed this kind of support but so far I am very glad I did and am making plans to attend the convention. So if your planning on attending and can appreciate a cold beer and good conversation - give me a holler! Sorry for the book.
brian
Hi............ I'm from northwest corner of Indiana (near Chicago) I'm not only a newbie to this forum but also to P.....about 3 to 3.5 years ago I developed scales on the scalp, that I and my dr. thought was seborheic dermatitis.............and then this past winter I started breaking out on elbows, under stomach, under boobs. and down the thighs....no strep throat, nothing I can pinpoint brought it on....I have a nephew in Las Vegas that has P since he was 18..... my sister and I both thought that he got it from his dads side of the family....NEVER OURS!!!!heaven forbid.....then I got it...! he and I are the only ones to have it.... parents, grandparents....as far as we know did not have P...but then people tend to hide the fact if they do! so who knows!!! I do not want to use steriods, so have searched for various methods ....to be continued
(I think I was over limit.....)read the Paganos book and am eliminating all "nightshades" from diet.....take two Ts of lecithin and two Ts of flaxseed meal that I grind.....from all natural flax seeds, drink the teas recommended by Paganos....take Coral Calcium (Paganos and Robt Barefoot stress a balance of ph factor) recently discovered MIRACLE2 soap for skin and shampoo and I have really noticed a BIG difference using them plus the neutralizer (that site also talks about ph factor) I found MIRACLE 2 in another forum when it was recommended to a mother with a small child that had P....I don't know if she searched it out but I did..and it has helped!! no scale on scalp first time since it started.
Something interesting about self....I'm a portrait artist....also do whimsical art for kids rooms...lots of nursery rhymes, I also specialize in animals, Santas, Victorian houses and damsels etc.
What do I hope to give?....a big shoulder... and to get....WELL!!!!
I am senior citizen Sally
Hello again, dear,
I am glad that you are among us, I am sure you will contribute a great deal to this board. Your honesty about your feelings and situation will help others dealing with the same issues. You are quite likely to inspire others.
It takes courage to face the issues you have been dealing with. I am glad you have a friend who is supporting you in such a helpful and appropriate manner. We all need at least one of those.
I hope that your courage will demonstrate to you that giving others a chance to be kind and gentle can and will pay off for you. However, I do think that the first, most important step you needed to make was seeing yourself through those very eyes.;)
Don't be a stranger.
Hi Z,
I responded in some length to another post of yours, but want to respond here as well.
Many of us here understand the worries when the p starts to spread to the visible areas, namely hands and face. The concerns of facing the public with p are very real, mostly people are afraid that they can catch it. The rude variety will just be that, the more tactful are just as worried, but suffer their concerns silently. Personally, I'm not really sure which is worse.:rolleyes: Well, I do hate the rude ones.:eek:
I hope that you have a positive experience at the derm, and come away with a good plan. Please let us know if we can help in any way. The folks here are so great....you'll see for yourself.:)
Hi Taryn,
I've already said welcome to you.:)
You really made a huge change in your life moving to CT. I bet your submariner is a great guy. Me, I come from a long line of fishermen, and I love the men who love the sea. They are a special breed, as are their women.
I am sorry you are having a bad time with your p, and hope your appt on the 14th will give you some relief. If you are seeing a gp, ask him for some medication to relieve the symptoms while you wait to see the derm. There are topical medications to help with the plaques, and oral medications to help with the itch and to help you sleep. If you have pain, ask for help with that too.
Good luck, glad you are here, and I look forward to getting to know you better.
Hi Brian,
Welcome to the board!:)
You are indeed a fortunate man! I love you story about your 4th party. I bet you deserve every ounce of caring that you recieved. ( I'd say "love" but that's not really a guy word)
I had a similar experience recently when I had a very terrible flare and the entire commnit came together to help. I was reminded of how much I generally contribute, which is considerable. I got back much the same, and it felt wonderful. I bet you felt just like that!
It sounds to me like you are ready for giving something unique to the board, and I bet we can help you too. Just ask.;)
Hi Sally,
Welcome to the board!:) Thank you so much for posting your reply. :)
I am interested in what is helping you, think I'll look for the Miracle 2. Where does one get it?
Sounds like you are a veteran of p...and I can respect your desire to stay away from the steroids, they can do a lot of harm. Best avoided when possible.:cool:
https://www.storesonline.com/site/402042/page/59192
http://home.earthlink.net/~tpco/mir...stimonials.html
hi: PJ the first url has the best prices that I could find...and the second one has some testimonials, which can or cannot be believed....these people are very religious so doubt they would fabricate ....at first when reading all the different sites (did a search in GOOGLE) I was kind of questionable about some things, but thought what the heck I'm going to try it.....I'm very pleased with the soaps and neutralizer...no more itching after 4 days and the plaque on my scalp is gone as long as I wash every day or every other.... nothing did this before and I must have 15 different bottles of shampoo...scalp is still pink (not red). Plaque spots had been fading prior to use but seemed to get even better....if nothing else its good for the planet and your garden.
Sally:D
35...live in NJ, work in NYC as an editor.
I was dx on my birthday! June 16th. Dr. said I have about 2% coverage, but I think it's a little more now. Using Dovonex and steroid creams. My right hand looks much better (that was the worst spot) but still pink.
I also have a "lupus-like" connective tissue disease, migraines, endometriosis and mitral valve prolapse.
I live with my wonderful DH, our "baby" Winnie (5 yr old Eng. bulldog), 2 spoiled kitties and an 11 yr old cocker spaniel we adopted when my mom-in-law moved and could not take her.
I'm the very proud aunt of 3 terrific teenaged nieces.
Hi! My name is Jackie. I am 25, and I live in Southeast Kansas.
I was diagnosed with p. 8 years ago after a horrible bout with strep. The p. came on fast and very quickly got out of control. I went to my dr. and he sent me to a derm who put me on Dovonex. I have plaque, guttate, inverse, and scalp p. 2 months ago I went to my dr. about pain I was having in my left hand, right knee, and my feet. He feels certain it is pa. but wants me to see a rheumy. Since I have no insurance, that is just not possible at this time. Right now my p. is healing fabulously. I've been getting lots of sun and moisturizing like crazy. My spots aren't scaly anymore, just pink & itchy.
I've not taken any meds since I went off the Dovonex. I just couldn't afford it anymore. For years I tried "just living with it". But the sun has helped alot this summer.
I can't think of anything interesting to tell you about myself. I am married to a very patient man who puts up with my ranting and raving when I feel like I can't take it anymore. I have a daughter who is 8 and a son who is 3. Both are p. free! I just hope it stays that way! I am a stay at home mom since I quit my high stress job 2 years ago. My health is better and I'm not giving my paycheck to a babysitter anymore.
I just absolutely love this board. I have read posts and laughed and cried. It's nice to talk to people who understand. I'm always looking for new information about this disease and this is the perfect place to find it. I want to help anyone who wants it and meet many new people.
Bye!
Hi Sally,
Thanks for the information and the url's.
Hi 'luv,
I am glad to hear that thigns are improving for you. Having p on the hands is really hard.:(
I love puppy dogs, too, and have one as well. No kitties, though. I hope the progress continues, and thanks for posting!
Hi Jackie,
Not having insurance and having p is a bummer. lol...all of the meds are expensive, but dovonex especially so!:mad:
I am really glad to hear that you are healing and doing well in the nice weather. I find that the sun does me a world of good, too.
I do wonder if there is a teaching hospital near you. That is often a source for free treatment and meds. I am glad to hear that you have a supportive partner. Having children has always helped me to focus on the important things in life. I hope it does that and more for you too.
Hi. My name is Sharon and I am in Washington state and I have had P since I was about 5 and am in my 30's now so pretty much all my life. When I was younger it was only on my arms and back of my legs but over the years it has spread from my forehead to my feet so I guess you could say I have it from head to toe.
I have tried all kinds of creams and ointments and it still comes back and at times gets worse. The only time I noticed that it was gone was when I was pregnant with my son.
What I hope to get out of the is just some friends who actuallly know what I am going thru and understand how frustrating it all is. What I hope to give is support to who ever needs it.
I work for a local school district and am around young kids all day so I hear a lot of does that hurt what is it and I just tell them that it is dry skin and not it doesn't hurt. I wear shorts in the summer and short sleeves and tank tops so I won't hide it. It is a part of me and it is who I am.
Welcome all newbies.....I, similar to PJ, have noticed all the new comers.....and have trouble keeping track. Of course I will only start to recognize names as people post more frequently. hope to be in communication with all you new folks (via the forum) soon, receiving and giving advice and support!
PJ - I do believe that having it so long (for me) made me have the "I have p so I better deal with it" attitude.
After reading these posts I find myself watching people in public now to see if they stare...lol...haven't seen anything weird yet.
Sharon - Seems you and I have the same feeling towards our p - it is part of us and we aren't going to hide it. I used to work with pre school aged children and during story/movie time they would want to sit next to me and they would rub my knees...lol...almost like a soothing affect on them. Like I was a silky blanket or something. So innocent how children have no worries and were never concerned that my p would harm them.
Jackie - Can you get samples from a doctor? I have insurance but my GP always gives me bags full of Tazorac and Dovonex to "save me the trip to the pharmacy". I would think your Dr. would be doing anything he/she can to help you continue your treatment. Good luck!!
Amy
Hey,
My name is Pam Marz. I am from South St Paul, Minnesota and I have had P for about 30 years now. I'll be 50 in Sept and first got P when I was a senior in High School. Yuk! I hid it to the max. No shorts or short sleeves....and it can get pretty hot in Minnesota in July and Aug! Anyway, it really flared up when I was pregnant and raised my daughter on my own....no stress there huh? LOL Well, she is 31 now and thank goodness she never got this ugly, ugly disease!
I joined the NPF in June and am totally impressed by it. I will be attending the conference in Aug and am looking forward to meeting and learning all sorts of new things!!!
So, there you have it! That's me in a nutshell! Yes, when you get to know me you will figure out I am a NUTCASE!!!
Glad to meet you all!
Hugs, Pammie ;)
Oh, I forgot to mention what is helping my P for now! I am using Dovenex and Ultravate...they work, but not all the time. I was taking Neoral a year ago and it completely worked! You can only be on it for a year or your liver will act up. So they let you take it for 6 months and then take you off for a year. Well, I am ready to go back on when my July 10th appt comes up this week! This makes me very happy! Hope you all have a wonderful day! :D
I noticed that we have a sudden abundance of newbies! This is so great, but I am having a hard time keeping track.:rolleyes: Must be hormonal.
So, newbies, please post the following information, if you would.
Name and location
Onset and current status of your p
Current medications
Something interesting and personal about yourself.
What you hope to get, and what you hope to give, to this board.
Thanks for humoring me. Your new friend....:p
Answers:
Good morning,
I'm Mandy, 25 and from Germany. I have P since the age of 12/13. It began on my scalp and is still there plus elbow, spots on my shinbones, feet, shoulderblade and its all few weeks showing up on my right hand + underarm, staying there for a while and then disappearing again. As I said, its on my scalp since Day One and in the past years it began to get more and showing up all around along the hairline (forehead, etc) and that's what has caused me the most distress so far. I told Taryn already yesterday, that I was always one of the quiet ones and the P totally turned me into "Miss Shy, no one wants me anyway" during my teenager years (actually until recently).
I never really talked about it, cried my tears alone. It's only since January that I try to deal more "actively" with my P. Trying to talk, learn and inform myself, accept and live with it, instead of bottling every feeling up inside of me and shutting myself away from people. I tend to keep myself to myself, in general.
This change was actually caused by a friend that I met online 2 years ago. For 2 years I always "wanted" to tell him, but the fear of rejection or negative comments was stronger, comments that I've heard often enough the past 10 years. But then I just did it, told him first in a mail, later on the phone about my P. I tell you, when I saw that he replied to my mail, I was holding my breath, trying to guess his reaction. It's weird, inside of me I knew that his reaction would be okay, yet I was "afraid" to open the mail. My friend's blind by the way and has his own "daemons" so to speak, not the blindness itself, more what he had to go through since childhood with close to 40 surgeries and everything that comes with them. So in a very special way, he could understand many of my feelings.
But since I told him, things began to change a little bit for me. I still have often tears, even when I just write or talk about my P, but nevertheless this helped me more than to keep it all to myself. For the time that I did this, I always broke down sooner or later with all the sadness, anger, feeling of embarrassment and whatever else I have kept inside of me.
Okay, I better stop here. Have to hurry to catch the train :p
Take care and have a nice day everyone!
Mandy
Answers:
Name and location - Amy - 28 - Upstate New York
Onset and current status of your p -
Have had it since I was 7, currently have it on scalp, elbows, knees, hands, feet, ears, little on arms and legs. P only gets white on knees, elbows and ears. Everyhere else is pinkish. I also was diagnosed with PA in 1997 - it affects my back, hips, ankles, wrists.
I am an old child - neither of my parents have p but my maternal grandfather had a little bit on his hands. My maternal grandmother had Lupus and some have said I could have gotten a bad chemical from her and it came out as p. As far as I know, I had strep and them bam! P was here.
Current medications -
None - ok, don't think I am nuts - I have Dovonex and Tazorac for my skin and Lidex for my scalp but I hardly ever use them. For me, Bath & Body Works Body Cream (not lotion) works better for me than anything else and for shampoo I use Head & Shoulders Intensive Treatment. When I was younger and had it alot worse I did light treatments, tar, everything time consuming and a pain.
For PA I don't take anything either. Just a pain pill when it gets bad. I will find out next week if I also have Iritis. (thanks to my PA)
Something interesting and personal about yourself -
Well, I didn't think this was so interesting until I started reading the stories on this board - I had no idea how badly P affected some people.
I have never let my P bother me. I wear shorts and short sleeves and I don't care what people think. The only questions I ever get is "Do you have poison ivy?" and "Does that hurt?"
I just say "No, it is Psoroasis" and that is the end of it.
A few people asking stupid questions will not deter me from doing what I want.
I am a very outgoing person and have always had a very active social life. It breaks my heart to read the stories of the teens that are recent p sufferers and what they are going through in school. I have had it for so long that by the time I reached hs everyone was used to it. It was never an issue in college either.
I guess I am lucky - but I also think it has a little to do with the fact that it has never been an issue for me mentally so maybe people notice that and move on.
I went to my GP yesterday and I told him a few stories about the board and how someone was refused entrance to the pool at a resort because of p and he went crazy. He thinks it is such a shame people are so ignorant. I travel alot (resorts and cruises)and I have never had anyone say anything to me about my p. I am more self conscience about the fact that I need to lose a few pounds.
I also have a wonderful boyfriend of 5 years - waiting for the ring...lol...and no children.
What you hope to get, and what you hope to give, to this board -
I hope to make some new friends and learn more about what life is like for others with p. I also have already learned alot about meds and treatments that I didn't know were available.
I hope to give some support to those that need it. Maybe offer a little advice when I can. I am planning to join as a member soon so I hope to be able to chat live with others.
Wow - that was alot - thanks PJ for posing the questions - I wasn't sure how to tell my "story".
Amy
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I'm from India & have it since i was in high school. M father has it too. I've tried allopathic medication, ayurvedic & homeopathic.Homeopatic works best for me. I'm 25 years old , Male.
ByE!
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Wow,
I am really impressed and touched by the responses. You are incredible.:cool:
Hi Mandy, I am so glad that you shared your story with us, thank you. I understand that even though it is written and not in person, it is no less difficult. In fact, I often find my written words more powerful than the spoken ones. Somehow it makes what I've said more real, and permenant. When talking about an issue as close to the heart as p can be, it seems to me you have taken a big step.
I did read your post to Taryn the other day, and knew something about your online friend. I did not know he was also handicapped. It seems that his acceptance of your p as ok was a major turning point for you. I am so pleased for you!:p Seriously, some folks never even get to that place. Hang around us long enough, we'll have you feeling sorry for all your poor body has gone through. That is different from feeling sorry for yourself, which is also ok in moderation, and only on odd numbered days. The evens are all mine!:rolleyes:
As far as the tears are concerned, they are ok. Reaching out to others, here and in your life will help to make you feel better and heal your heart. I doubt there is a person who posts on this board who has not felt those same tears.:(
Hi Amy , Thanks for introducing yourself. Your story makes me wonder if it is easier for those who get p at an early age. Not that I would wish it on anyone. But, you sound like you have such a healthy additude about having p. You mention that by hs you just didn't much care , it was not an issue for you, but you have concern for those with teen aged onset.
I think its great that you found non prescription products that work so well for you. Just stay away from the strep! :rolleyes:
BTW, the person whom was refused access to the pool was me:mad: . It was at the Hilton in Honolulu in 1980. Got a room upgrade, and my entire bill comped, but no access to the pool. Boy am glad that things have changed! You are fortunate and wise to have a dr with that sort of reaction to your stories. It is a good sign.
I look forward to hearing from both of you fine ladies, and perhaps more from vexal.
A most sincere welcome to the board!
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Thanks for your welcome :)
You're right, to talk to my friend was a turning point for me. It was after years the first time that I told a friend directly what it is that I have and gave the name of it.
Those days were strange. Something inside of me knew, that he'd be okay with it, yet I was "afraid" of his reaction; perhaps because it were in the past also several times friends who reacted negative.
But he was in fact very caring and from that day on, he'd frequently ask me, how I am doing. Not just this kind of quick "What's up?", but how the P on my scalp or wherever is doing, what kind of meds I take, he asked me to mail him info's. Sometimes he'd search the net and tell me about treatments, asking me if they might be a chance for me ... all that, his willingness to listen to me and to learn, instead of quickly jumping to conclusions, meant a lot.
I got so many negative reactions in the past and at one point I was fed up with it and my thoughts were like "i might as well stay alone etc".
But after the talks with him, I changed my mind from thinking "if i tell someone about the P, s/he will react negative", to "why not trying to tell a friend, when i feel ok and give him/her a chance and wait for the reaction, instead of assuming that it will be a negative one".
When I told him about the feelings that I had during the past years, how I changed my behaviour in certain situations etc, he told me that he understood. He had to go through almost 40 surgeries and lost his sight at the end. He told me that you dont go through that for 20 years without having something left over from it. The blindness is no problem for him, but surgeries leave scars and he told me, that they are in fact what tortures him every day. He knows about wearing only certain clothes, or not going to the pool, the looks and comments from strangers ....just as example. So our cases may be very different, but the feelings we had, were often similar and I guess thats partly where our good understanding is coming from.
Hehe, I did it again! Found a way to avoid housework and cleaning, thanks to the messageboard :p
But I better hurry up now.
Mandy
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I am not brand new, but fairly new, so I will do this.
I am 30 and live in Las Vegas, NV. I have had P for 9 years and it has very slowly gotten more and more. I have an appointment with a derm on the 8th of July (my first appointment ever with a derm for this.) My spotty and dotty (i guess guttate) P is spreading slowly and so I need to do it but I am embarrased. Also, I work in law enforcement, and it it getting to the point now that the p is in areas not covered by my uniform. I hope the derm can do something. I have only taken one medication from my family doc 3 years ago, he thought it may have been excema, but from pictures and such i think it is p. It was a steroid cream started with an E, but it didn't do anything. I hope I can learn something from board, or something can be done to contain P.
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Name and location: Taryn, Connecticut USA
Onset and current status of your p: I had my 1st case of P just after I graduated from high school in 2001. I was diagnosed with Gutate, but I have patches of Plaque also. This is the 3rd time I have had it flare up. It always seems to flare up in the late springtime and go away in the early fall. Right now it is the worst it has ever been.
Current medications: I just moved to CT last year, so I don't have a derm yet and I need permission from my doctor to see one in order for my insurance to cover the visits. My doctors appointment is the 14th of this month. Hopefully I will get meds soon. My previous meds have been topical creams.
Something interesting and personal about yourself: I am married to a submariner in the US Navy, I have 3 ferrets, and I was born and raised in the same town in the same house in Montana and never even saw the Atlantic Ocean until 2002 (now I live about 5 miles away from it).
What you hope to get, and what you hope to give, to this board: I hope to gain confidence in myself and learn effective ways of physically and emotionally dealing with my disease; I want to meet other people that I can relate to and hopefully create lasting friendships with; and I want to be able to inspire someone else through my example someday.
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Name and location: Brian recently relocated to San Diego
Onset and current status of your p: I had mild spots on my back & hands pop up around 23 or so, 36 now. Somewhat ironic - When I first started having symptoms I went to several doctors and none of them diganosed it for what it was, I heard everything from "ring worm" to "mild skin cancer"! I met a female derm at a bar one night and she out of the blue asked me what I did for my p., and I said "huh"? Anyway, it was mild to moderate until the last year or so (got divorced, changed to a "high-stress" job) and in the last 3 months it has just got out of control! As I'm sure you all are aware- I have been going thru all the head stuff that goes along.
Current medications: Have Dovonex (creme & ointment), Ultravate, and betamethasone. I travel extensively for work so I do not follow the treatment like I'm suppose too which sucks because the dovonex actually worked well when used properly. I'm pretty concerned now because it has gotten so bad that if I were to use it properly I would use 200 grams a week! I have an appt with the doc next week to ask about enbril or amevive. I am curious if anyone on the board can give me some feedback about the home UV devices.
Something interesting and personal about yourself.: I'm sorry to write a book here - but it really helped me out yesterday- I live in San Diego and I have a group of very active friends. I was invited to a bbq for the fourth. All these people are very much loyal beach goers and I know that they have been talking about bbq'ing on the beach for the holiday (big thing in S.D.) for about a month. When they invited me, I obviously turned it down for the obvious reasons. Now they have never asked me "what's wrong with your hands" or "why do you wear long sleaves in the summer", but about 2 hours after I told them no thank you, I got a call and was told "would you come if we bbq'ed at the park"? Let me tell you, I did'nt realize how good of friends I had till that very moment! These people have never even mentioned or acknowledged my p. To top it off, it is known that I am originally from Chicago and that I LOVE to grill- I was even asked to make the burgers. For a day that I had assumed that I would sit around the house - turned out to be an incredibly great day!
What you hope to get, and what you hope to give, to this board: I really can't answer that. Until recently I did'nt even acknowled to myself that I needed this kind of support but so far I am very glad I did and am making plans to attend the convention. So if your planning on attending and can appreciate a cold beer and good conversation - give me a holler! Sorry for the book.
brian
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Hi............ I'm from northwest corner of Indiana (near Chicago) I'm not only a newbie to this forum but also to P.....about 3 to 3.5 years ago I developed scales on the scalp, that I and my dr. thought was seborheic dermatitis.............and then this past winter I started breaking out on elbows, under stomach, under boobs. and down the thighs....no strep throat, nothing I can pinpoint brought it on....I have a nephew in Las Vegas that has P since he was 18..... my sister and I both thought that he got it from his dads side of the family....NEVER OURS!!!!heaven forbid.....then I got it...! he and I are the only ones to have it.... parents, grandparents....as far as we know did not have P...but then people tend to hide the fact if they do! so who knows!!! I do not want to use steriods, so have searched for various methods ....to be continued
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(I think I was over limit.....)read the Paganos book and am eliminating all "nightshades" from diet.....take two Ts of lecithin and two Ts of flaxseed meal that I grind.....from all natural flax seeds, drink the teas recommended by Paganos....take Coral Calcium (Paganos and Robt Barefoot stress a balance of ph factor) recently discovered MIRACLE2 soap for skin and shampoo and I have really noticed a BIG difference using them plus the neutralizer (that site also talks about ph factor) I found MIRACLE 2 in another forum when it was recommended to a mother with a small child that had P....I don't know if she searched it out but I did..and it has helped!! no scale on scalp first time since it started.
Something interesting about self....I'm a portrait artist....also do whimsical art for kids rooms...lots of nursery rhymes, I also specialize in animals, Santas, Victorian houses and damsels etc.
What do I hope to give?....a big shoulder... and to get....WELL!!!!
I am senior citizen Sally
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Hello again, dear,
I am glad that you are among us, I am sure you will contribute a great deal to this board. Your honesty about your feelings and situation will help others dealing with the same issues. You are quite likely to inspire others.
It takes courage to face the issues you have been dealing with. I am glad you have a friend who is supporting you in such a helpful and appropriate manner. We all need at least one of those.
I hope that your courage will demonstrate to you that giving others a chance to be kind and gentle can and will pay off for you. However, I do think that the first, most important step you needed to make was seeing yourself through those very eyes.;)
Don't be a stranger.
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Hi Z,
I responded in some length to another post of yours, but want to respond here as well.
Many of us here understand the worries when the p starts to spread to the visible areas, namely hands and face. The concerns of facing the public with p are very real, mostly people are afraid that they can catch it. The rude variety will just be that, the more tactful are just as worried, but suffer their concerns silently. Personally, I'm not really sure which is worse.:rolleyes: Well, I do hate the rude ones.:eek:
I hope that you have a positive experience at the derm, and come away with a good plan. Please let us know if we can help in any way. The folks here are so great....you'll see for yourself.:)
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Hi Taryn,
I've already said welcome to you.:)
You really made a huge change in your life moving to CT. I bet your submariner is a great guy. Me, I come from a long line of fishermen, and I love the men who love the sea. They are a special breed, as are their women.
I am sorry you are having a bad time with your p, and hope your appt on the 14th will give you some relief. If you are seeing a gp, ask him for some medication to relieve the symptoms while you wait to see the derm. There are topical medications to help with the plaques, and oral medications to help with the itch and to help you sleep. If you have pain, ask for help with that too.
Good luck, glad you are here, and I look forward to getting to know you better.
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Hi Brian,
Welcome to the board!:)
You are indeed a fortunate man! I love you story about your 4th party. I bet you deserve every ounce of caring that you recieved. ( I'd say "love" but that's not really a guy word)
I had a similar experience recently when I had a very terrible flare and the entire commnit came together to help. I was reminded of how much I generally contribute, which is considerable. I got back much the same, and it felt wonderful. I bet you felt just like that!
It sounds to me like you are ready for giving something unique to the board, and I bet we can help you too. Just ask.;)
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Hi Sally,
Welcome to the board!:) Thank you so much for posting your reply. :)
I am interested in what is helping you, think I'll look for the Miracle 2. Where does one get it?
Sounds like you are a veteran of p...and I can respect your desire to stay away from the steroids, they can do a lot of harm. Best avoided when possible.:cool:
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https://www.storesonline.com/site/402042/page/59192
http://home.earthlink.net/~tpco/mir...stimonials.html
hi: PJ the first url has the best prices that I could find...and the second one has some testimonials, which can or cannot be believed....these people are very religious so doubt they would fabricate ....at first when reading all the different sites (did a search in GOOGLE) I was kind of questionable about some things, but thought what the heck I'm going to try it.....I'm very pleased with the soaps and neutralizer...no more itching after 4 days and the plaque on my scalp is gone as long as I wash every day or every other.... nothing did this before and I must have 15 different bottles of shampoo...scalp is still pink (not red). Plaque spots had been fading prior to use but seemed to get even better....if nothing else its good for the planet and your garden.
Sally:D
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35...live in NJ, work in NYC as an editor.
I was dx on my birthday! June 16th. Dr. said I have about 2% coverage, but I think it's a little more now. Using Dovonex and steroid creams. My right hand looks much better (that was the worst spot) but still pink.
I also have a "lupus-like" connective tissue disease, migraines, endometriosis and mitral valve prolapse.
I live with my wonderful DH, our "baby" Winnie (5 yr old Eng. bulldog), 2 spoiled kitties and an 11 yr old cocker spaniel we adopted when my mom-in-law moved and could not take her.
I'm the very proud aunt of 3 terrific teenaged nieces.
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Hi! My name is Jackie. I am 25, and I live in Southeast Kansas.
I was diagnosed with p. 8 years ago after a horrible bout with strep. The p. came on fast and very quickly got out of control. I went to my dr. and he sent me to a derm who put me on Dovonex. I have plaque, guttate, inverse, and scalp p. 2 months ago I went to my dr. about pain I was having in my left hand, right knee, and my feet. He feels certain it is pa. but wants me to see a rheumy. Since I have no insurance, that is just not possible at this time. Right now my p. is healing fabulously. I've been getting lots of sun and moisturizing like crazy. My spots aren't scaly anymore, just pink & itchy.
I've not taken any meds since I went off the Dovonex. I just couldn't afford it anymore. For years I tried "just living with it". But the sun has helped alot this summer.
I can't think of anything interesting to tell you about myself. I am married to a very patient man who puts up with my ranting and raving when I feel like I can't take it anymore. I have a daughter who is 8 and a son who is 3. Both are p. free! I just hope it stays that way! I am a stay at home mom since I quit my high stress job 2 years ago. My health is better and I'm not giving my paycheck to a babysitter anymore.
I just absolutely love this board. I have read posts and laughed and cried. It's nice to talk to people who understand. I'm always looking for new information about this disease and this is the perfect place to find it. I want to help anyone who wants it and meet many new people.
Bye!
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Hi Sally,
Thanks for the information and the url's.
Hi 'luv,
I am glad to hear that thigns are improving for you. Having p on the hands is really hard.:(
I love puppy dogs, too, and have one as well. No kitties, though. I hope the progress continues, and thanks for posting!
Hi Jackie,
Not having insurance and having p is a bummer. lol...all of the meds are expensive, but dovonex especially so!:mad:
I am really glad to hear that you are healing and doing well in the nice weather. I find that the sun does me a world of good, too.
I do wonder if there is a teaching hospital near you. That is often a source for free treatment and meds. I am glad to hear that you have a supportive partner. Having children has always helped me to focus on the important things in life. I hope it does that and more for you too.
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Hi. My name is Sharon and I am in Washington state and I have had P since I was about 5 and am in my 30's now so pretty much all my life. When I was younger it was only on my arms and back of my legs but over the years it has spread from my forehead to my feet so I guess you could say I have it from head to toe.
I have tried all kinds of creams and ointments and it still comes back and at times gets worse. The only time I noticed that it was gone was when I was pregnant with my son.
What I hope to get out of the is just some friends who actuallly know what I am going thru and understand how frustrating it all is. What I hope to give is support to who ever needs it.
I work for a local school district and am around young kids all day so I hear a lot of does that hurt what is it and I just tell them that it is dry skin and not it doesn't hurt. I wear shorts in the summer and short sleeves and tank tops so I won't hide it. It is a part of me and it is who I am.
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Welcome all newbies.....I, similar to PJ, have noticed all the new comers.....and have trouble keeping track. Of course I will only start to recognize names as people post more frequently. hope to be in communication with all you new folks (via the forum) soon, receiving and giving advice and support!
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PJ - I do believe that having it so long (for me) made me have the "I have p so I better deal with it" attitude.
After reading these posts I find myself watching people in public now to see if they stare...lol...haven't seen anything weird yet.
Sharon - Seems you and I have the same feeling towards our p - it is part of us and we aren't going to hide it. I used to work with pre school aged children and during story/movie time they would want to sit next to me and they would rub my knees...lol...almost like a soothing affect on them. Like I was a silky blanket or something. So innocent how children have no worries and were never concerned that my p would harm them.
Jackie - Can you get samples from a doctor? I have insurance but my GP always gives me bags full of Tazorac and Dovonex to "save me the trip to the pharmacy". I would think your Dr. would be doing anything he/she can to help you continue your treatment. Good luck!!
Amy
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Hey,
My name is Pam Marz. I am from South St Paul, Minnesota and I have had P for about 30 years now. I'll be 50 in Sept and first got P when I was a senior in High School. Yuk! I hid it to the max. No shorts or short sleeves....and it can get pretty hot in Minnesota in July and Aug! Anyway, it really flared up when I was pregnant and raised my daughter on my own....no stress there huh? LOL Well, she is 31 now and thank goodness she never got this ugly, ugly disease!
I joined the NPF in June and am totally impressed by it. I will be attending the conference in Aug and am looking forward to meeting and learning all sorts of new things!!!
So, there you have it! That's me in a nutshell! Yes, when you get to know me you will figure out I am a NUTCASE!!!
Glad to meet you all!
Hugs, Pammie ;)
Oh, I forgot to mention what is helping my P for now! I am using Dovenex and Ultravate...they work, but not all the time. I was taking Neoral a year ago and it completely worked! You can only be on it for a year or your liver will act up. So they let you take it for 6 months and then take you off for a year. Well, I am ready to go back on when my July 10th appt comes up this week! This makes me very happy! Hope you all have a wonderful day! :D
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