john,Hulk
...feeling okay john,Hulk @chewbacca

Secrets, strangers

I am surprised how many flakey people there is on Flaym that dont comment here,Theres a lot near me,where i live,Maybe they join and look in and see theres no cure and flee ? its a shame, be good to hear their input, :)

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53 responses

psomom
psomom @psomom

I’m sure there are lots of lurkers like me who are reading from the shadows :) I’m not shy in real life but usually quiet on social media. Because I don’t have P myself I feel like I want to participate in order to give back something (anything) in order to show my gratitude for letting me in to this group, and for all the amazing info, ideas and support here.


 john,Hulk
john,Hulk @chewbacca

Thats nice Psomom :) believe or not, i am quite shy but confident behind a pc :) yes its a great site good thing, we like to help each other ,not like some sites and we do have some laughs on the way, good treatment for P :), hundreds of lurkers believe me, i keep trying to follow them all,geeeze, i am stalker haha thank you :)


Michelle
Michelle @michelle1021

Most are looking for a cure. Unfortunately...


popeye
popeye @el1

I'm surprised too John and if it was'nt for this group who would know about " LEMONS" I've not seen anyone else on here from London ?? Maybe i'm the only one ?


 john,Hulk
john,Hulk @chewbacca

True Michelle i know,I am sure if there was one,it would be advertised in a lot of places,be a chance for more money to be made though it would be worth it :)


 john,Hulk
john,Hulk @chewbacca

True as well EI, there used to be quite a few from London on here last year, maybe they fled ?


Karin
Karin @karinm

I’m in London. Some of the time anyway.


Joyce
Joyce @joyce6

I don’t post often but check out the posts avidly for more insight into methods of control. I only have a relatively mild break out at present, just on the back of my left hand but unlike many on here, mine is actually made worse by the sun as it’s very dry to begin with so itches a lot more in summer.
I love this site as it is so positive but only tend to post when I have anything useful (or hopeful) to contribute. 🙂🙂


 john,Hulk
john,Hulk @chewbacca

I usually find that there are the regulars like myself and others that post or comment everyday more or less, Theres the ones who come in and stay for a few months and leave ,some that come in for a couple of weeks and go, I have seen so many people come and go in around 18 months,theres hundreds that dont come in i have seen and follow,i know its to look for a cure for this ,Well who ever finds a cure will be living the dream and rightly so with all the lives that they would change :)


Joyce
Joyce @joyce6

I feel kinda sorry for those looking for a cure, they don’t understand the nature of their condition. The best you can aspire to is to control it to the extent that it goes into “remission” but it will always be there just waiting to catch you off guard. 😔


Michelle
Michelle @michelle1021

True Joyce. Mine went into remission for about 10 years. Due to emotional stress it flared up again and I was 95% covered in P. My flare disappeared quite quick though, about 4 months later and I had 5% P to show. People should not concentrate in getting a cure as per yourself, rather look after your body and stay healthy. :)


 john,Hulk
john,Hulk @chewbacca

Yes i know what you mean Joyce, i am sure we would know about it if there was one?Psoriasis is still quite taboo subject for a lot of people as many do not want to talk about it , its the shame factor, i have been there, Gladly i know how mine works after a life times worth thank you :)


Lindakay1948
Lindakay1948 @lindakay1948

THERE IS NO CURE...just time to wish there was. I am out in my Garden John stop by if your ever close to me North East of Reno Sixty miles to Farmland and I will be the woman in jeans kicking Butt Love you..oh and flakey on my back hoe hahahahaha hate those bumps..I drop about 2 pounds of flakes..into my clothes at least I step on my scale hoping I dropped that last ten pound but flakes and scales lie


 john,Hulk
john,Hulk @chewbacca

Haha, shame , you are too far away Lindakay otherwise i would :) i am in the uk, thats so funny haha oooh thats a lot of flakes, you can sell it for weddings, makes good confetti :)


Chris
Chris @Chris70

I'm so quiet ....well maybes not believe you should voice an opinion and on here is a brilliant way to do itn


Lindakay1948
Lindakay1948 @lindakay1948

Chris Opinions are just opinions...so swing away Chris swing away


Lindakay1948
Lindakay1948 @lindakay1948

John has given me a New Legacy Gift "Confetti Flakes"...gosh just the thought of some poor bird flying off with bits of this to their nest distracts me completely :) Funny John hahahahaha


 john,Hulk
john,Hulk @chewbacca

You like to flake upon your land,,,,,, you peel them off with a flakey hand ,,,,,,You scratch your butt see all the flakes ,,,,,you know about the mess this makes,,,,, The itch is much and hard to bare,,,,, its cos of all your flakey hair :)


 john,Hulk
john,Hulk @chewbacca

You okay Chris? thanks


Susan
Susan @godcares

john I didn't know that. I know there are quite a few in BC that I haven't heard from either. Many of us have found cures, many give advice, many just need emotional support.


Jill
Jill @jilliemac

We need to encourage and support each other...Since we are on the front lines, anything we try that helps ,we should share.⚘⚘


Clint
Clint @NJClint

Share lemon 🍋 if you dare...😀


 john,Hulk
john,Hulk @chewbacca

Hello Susan :) Its a shame as there are quite a lot of people near me very close by. Would i go for a meet?, yes sure i would as long is it wasnt too depressing that would be okay as i couldnt deal with that,Only if they were commenting on here now and again etc those people who lived near me,then i would arrange a meet up. :)


Chris
Chris @Chris70

Hey John I've never met another flaker like you would like to but only on a positive note


 john,Hulk
john,Hulk @chewbacca

It would be nice Chris, As we both agree with a positive note and maybe make a friend or 2, :)


 john,Hulk
john,Hulk @chewbacca

i know 3 people with psoriasis and they dont get it like i do though mines not bad compared to a lot of people here say, At the moment i look like a clear skin well near enough, odd flake here and there and my toxin portal patch that cant make its mind up whether its staying or going :), i have seen bad psoriasis on people though, residents in the nursing home where i work,i dont think i would cope with what i seen on them to be honest, My step mothers said when i was around 12/13 i think ?, that i should meet/marry someone with psoriasis,i have never needed to have a relationship with a psoriatic i dont think? ,i think she said that as i had it bad as a child at that time , :)


Michelle
Michelle @michelle1021

Give your portal patch some time and sunlight. Not direct sunlight though. I think it will take longer as you're wearing a shirt the whole time except if you go camping. Our P needs to breath and needs fresh air/rays. It will get better John :) We don't need to be in a Psoriatic relationship to feel accepted and happy. Clear skins can make us happy too. There are clear skins who like me the way I am. P and all and its nice. I think your step mom tried to make you feel better by saying that John. You know now what she was trying to say. :)


 john,Hulk
john,Hulk @chewbacca

Thank you Michelle,yes only time i dont wear a T shirt is in my bedroom though i got to remember to put it on for going to the toilet as we have a muslim lady in the room next door, i did get caught out a few weeks ago and she didnt know where to put her face, cant show my chest off because of her beliefs etc otherwise i wouldnt care as my skin is good and i dont think my house friend would care about me going topless and she wouldnt notice i have P i dont think? i would i keep my arm to one side over my toxin portal patch :)Yes i have always been accepted by clear skins,i wouldnt have had relationships with anyone otherwise i dont think? :)


Jen
Jen @jen1984

I think a lot of people who look at Flaym get 'frightened' because we talk a lot about diets and natural approaches and I think they are reluctant to try because they don't want to give up the foods they like. They would rather swallow a pill. No offence to those who use meds or biologics. As John always says 'its a choice for everyone'. I have spoken with some Flakers here and they all say 'no thanks ' to diet suggestions. Each to their own. Other sites are all about meds/biologics.


 john,Hulk
john,Hulk @chewbacca

I agree with you Jen and about other sites with medication etc, i am in the view its all a choice and i dont judge like a lot of us dont as we just want all this gone and thats it, i understand that for sure,When i first came here Jen, Diet/lifestyle changes were laughed at, rarely anyone mentioned it a few that did say about it were told to get lost and its stupid,I did listen and i started seeing some changes mainly in my joints and skin less flakey etc,i thought i was going to be a clear skin at that time though i know i wont be but, i have improvements and thats accepted since last year and now. A few of us were putting posts up about diet lifestyle changes etc and what can work for a lot of people over a year ago, its so different here now than since i first came here Jen, it was all posts about creams and pills, biologics, i saw a lot of this posted at that time,I see a lot of these people that do these medications slip away from here in a short time, so i am convinced these are not good at all, its a miracle to begin with at the beginning and then you hear nothing from them,,, thank you :)


Jen
Jen @jen1984

Well John the anti inflammatory diets have helped a lot of us and the first time I heard about this was through Susan and you. I know the P will always be lurking somewhere waiting to hit again but the things we do to fight it seem to be successful. So thanks Susan and you John and both Michelles and Sarah who have helped me through this since I joined. I don't think I'll ever leave. There's always something new!


Michelle
Michelle @michelle1021

You are so right there Jen. I have spoken to a lot of Flakers and they disregard the diet/lifestyle changes advice. They are broken people. I mean, mentally and some physically but the only thing they will listen to is when you suggest a med. I just tell them that everyone is breakable, but not everyone is aware that it is a choice to stay broken. The choice start with oneself. I have changed my diet so much since joining Flaym. Thank you to you as well. This is a great site. Like you said, there is always something new and it don't just stay with P. We are improving ourselves, mentally and physically. Thank you Jen xx


 john,Hulk
john,Hulk @chewbacca

Thank you very much Jen , kind of you to say that though i have slowed down a lot here now compared to last year with giving out diet/lifestyle plans, almost retiring lol though i need not to worry as i am not a flaym ambassador so i dont and never feel commitment which is great for me :) , I am glad we can help each other as thats what it is all about i think,Yes Susan, 2 Michelles and Sarah are great and you are too Jen dont forget yourself as you put enough input in too :) :) I have tried on other sites and its a waste of time,i just left another site yesterday as it was stressing me with unhappy people that didnt like what i was saying regarding lifestyle changes , though i did help a couple of people which is something than nothing,cant see the point getting abuse trying to help people with my posts , ah well, my stress has gone now :) thank you very much Jen :) :)


Michelle
Michelle @michelle1021

ambassador or not John, you are the reason why some Flakers are still here. You give excellent advice and I'm one of your followers. John is right Jen, don't forget about yourself. You are giving great advice and your input means a lot to everyone.
:)


 john,Hulk
john,Hulk @chewbacca

Thank you very much Michelle, Kind of you to say that ,same for you and others here that want to help others with this :) well there lots of lovely people here, why i stay thank you , :)


 john,Hulk
john,Hulk @chewbacca

Ah and dont forget LEMON MAN CLINT great advice and good feedback from a lot of flakers :)Ah see Clint i didnt forget you with the yellow looking minaiture rugby ball :)


Michelle
Michelle @michelle1021

I'm a big follower of Clint as well. The lemon made a huge impact on this site. Thank you Clint!


Clint
Clint @NJClint

Thanks John and everyone I was on flaym reading all the ideas way before I came across lemon 🍋 I wanted to share my success with others diet is important also you flakes are great frosted or not...😎


Jen
Jen @jen1984

Thank you for your kindness John and Michelle.
I don't post very often. Only when I feel I can offer advise or have a question. But I read everything. Sometimes I type a very long response and it disappears for some reason and then I can't be bothered anymore. Sad I know...
Also I find if we cannot mention any meds - even OTC -then how can we help eachother. But I understand and I'm aware of the reasons why. There's always private messages as well. Also sometimes I don't seem to be able to click 'like'. Thank you.


Michelle
Michelle @michelle1021

Thank you for sharing it with us Clint. You have made a difference in our P. :)


Michelle
Michelle @michelle1021

I'm sorry about that Jen. I find it very frustrating when the comment/emotions icons are grey'd out. I don't know if anybody else experience the same? When I go on Flaym from my phone, I usually experience problems.


 john,Hulk
john,Hulk @chewbacca

I do get the same problem, i click on the emotion i want and refresh and look to see if its there, it does work for me, i did have a problem a few months ago and had to put new updates in and that cured that problem also,i just clicked that i love Michelle and refreshed ,worked straight away, worth a go :)


Jen
Jen @jen1984

Yeah I remember that John you weren't very happy about it. But all good now.


 john,Hulk
john,Hulk @chewbacca

Sorry, love michelles comment :)


Jen
Jen @jen1984

It's ok you can love Michelle.


Michelle
Michelle @michelle1021

Hahaha. See, it shows there's a problem and it's not us. lol


 john,Hulk
john,Hulk @chewbacca

Why not ,Who dosnt love Michelle@michelle 1021 here :)


Michelle
Michelle @michelle1021

Well I love you all too xx


psomom
psomom @psomom

Weird. I just wrote a longish gushy grateful for you all post that disappeared


Jen
Jen @jen1984

Yeah that happens to me too. You can only use 250 characters I think. And if you write a second post you have to wait for 5 minutes.


Michelle
Michelle @michelle1021

Same here psomom especially when I do it from my phone but not always. :)


psomom
psomom @psomom

I had included a link I wanted to share...I am guessing now maybe that is a no no so my message was not posted.


Michelle
Michelle @michelle1021

We are not allowed to post links on here but you can send it in a pvt message Psomom. :)



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 john,Hulk
john,Hulk @chewbacca
Salisbury, Wiltshire, United Kingdom

DONT MAKE ME ANGRY, YOU WONT LIKE ME WHEN I AM ANGY, I TURN VERY FLAKEY I am a maintenance operative in my job, i am a plumber by trade.I have had psoriasis all my life since birth 50 yrs, psoriatic arthritis 16 years.




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