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I'm wasting away and leave bits of myself wherever I go

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I'm wasting away and leave bits of myself wherever I go
Thing Offline
Newbie


Posts: 3
Threads: 1
Joined: Oct 2016
Gender: Male
Location: London
Treatment: Nothing right now.
#1
Smile  Sat-08-10-2016, 04:22 AM
Hello,

I don’t normally talk about my condition. Well, not unless it is to a doctor. Actually, I lie, I have not talked to a doctor in six years. When I used to talk to them I used the minimum number of words to describe my condition and then spent the rest of the time staring at them foolishly and trying to keep my anxiety under control.  Come to think of it, I did the exact same thing with dentists, pharmacists, grocery store owners and random tourists asking for directions.

Two days ago, I caught a cold and now my whole body feels so tight I wish I were a snake so that I could shed this skin and get some relief. But, since I couldn’t do that and since I’m typing this at four in the morning, my best next course of action was to do what I’ve done for years, go to uncle Google and see if there are any new treatments and tricks to ease this discomfort. Through a circuitous route of adverts, websites requiring registration before you read them and clinical journals, Uncle G eventually sent me here.

I always knew I wasn’t alone in this. I read about others suffering from the same thing and sometimes, on a crowded train or bus, spotted one or two with very clear signs. Sadly, they didn’t return my “kindred spirit” looks and probably thought me very creepy. Now I find there is a whole forum of people with the same condition and, even if this is my last ever post on here, know that I could read their postings and occasionally mutter to myself “that’s exactly how it is.  The irritating unreachable spot under the shoulder blade, right?”

In fact, it’s not only the shoulder blade. It’s in the bits that clothes can hide and the bits it can’t. I have a black face but the constant use of those strong creams in the early days have made me look like one of Theresa May’s favourite leopard skin heels (all pigmented and multi-coloured). The bits on my arms and legs are as if I walked into a tattoo parlour and demanded they paint bits of poppadum all over me. I could swear I have one in the shape of a heart.

Beards are trendy these days.  I would love to grow one and know that mine would be great.  I can actually grow a full beard if I wanted to, there are no missing bits of dry islands on my face (well other than the plaque). But, like buying a Ferrari when you’re banned from driving, growing a beard that you can’t stroke is pointless.

I once was having lunch with two female friends. One of them started praising my hands and the other laughed. Then both took a hand each and went on and on about how great and smooth and glowing my hands were, how shiny my nails were and how beautiful my skin was.  I asked them to volunteer any positive comments on the rest of me but they were only interested and fascinated with my hands.  When the condition started and found its way to my (allegedly) lovely nails, I kept my hands in my pockets whenever I met those ladies again.

I used to have hair. I am not sure if I lost it naturally or because of the condition. Incidentally, I refer to it as the “condition” because I don’t really like its name.  I once had an idea that the reason all the medications were never a full cure was because psoriasis was never a full word. That ‘P’ gives me the same itch as the plaque itself.

Anyway, I’m forty-five, a father of four and had this condition for over 20 years.  I apologise if I bored you with my whinging but I really have a cold and my skin really feels tight and I wanted to vent to (what I hope are) like-minded people.

p.s
I know I should probably go see a doctor and I will.  I probably should also go to sleep but will try to keep an eye on the site on a daily basis. Glad to be a member of you’ll have me. Bigarm
Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,560
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#2
Sat-08-10-2016, 08:06 AM
Hi Thing ! Smile

There is no doubt. You are welcome with us on Psoriasis Club. Indeed a fellow group of sufferers of this nasty condition called psoriasis.
What we found out over here all together is that psoriasis can be controlled with the right kind of medication.
I don't know if you have used medication before, but indeed it usually starts with a visit to the dermatologist.
So you will have to get a prescription for that.
Before you go there, it can be wise to read over here and to chat with us on what probably will happen over there and the possible reactions you can expect.

I really wonder how your wife and kids are dealing with your condition. Have they grown accustomed to it?

Psoriasis has a different expression with everyone, but of course there are many common things, amongst us. In this forum we talk about it, talk about experiences, about new treatments, etc.
And if we are tired with that, we gather in the Off Topic section for a drink and a bit of banter between us all.

We hope you will find yourself comfortable with us and that perhaps you finally will find a way to drop off that second skin. Big Grin

Cheers,
Caroline
jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#3
Sat-08-10-2016, 09:47 AM (This post was last modified: Sat-08-10-2016, 10:10 AM by jiml.)
Hi "T"  I can't call you a thing..... Big Grin I'm glad google pointed you towards us.....but 4am is even a step to far for me  Big Grin
But you have come to probably the best place for advice and support for the disease, and now you are a member of a great community all with at least one thing in common the life of psoriasis, some of us are controlling it very successfully, but I'm afraid that does need the help of a dermatologist.
You will find here a great friendly group, if you want proof then look no further than the off topic section.

What I will say is don't waste your money on " cures" for psoriasis as there isn't one....but there are many scams to get your money....offering you relief....they will just relieve you of your money not cure ......they may moisturise your skin.....but so will a good quality virgin unprocessed coconut oil

Do enjoy your time on here and browse the health boards ....but mostly my advice is see your GP and get him to refer you to a dermatologist and come here often........I so enjoyed your way with words in your introduction .....looking forward to reading more

Jim
Enjoy a slice of cake on us

JohnB Offline
I wanted to be an Engineer when I grew up, but was told I could'nt do both

100 + Member I Just Cant Stop !
Posts: 4,725
Threads: 36
Joined: Jan 2016
Gender: Male
Location: Lancashire UK
Psoriasis Score: 10
Psoriatic Arthritis Score: Hmm Maybe
PQOLS: 5
Treatment: Otezla/Apremilast & Enstilar occasionally.
#4
Sat-08-10-2016, 13:29 PM
Right let's try this again. I spent 10 minutes writing a nice welcome for you while I was having breakfast in M&S my phone tossed a wobbler and threw the lot out.  Angry . 

So a warm welcome to you T,  Wave . I'm with Jim on the thing bit, it just doesn't feel right, its not how we are on here. First off I would strongly recommend you go and see your GP explain the negative impact that this disease is having on your life and insist on a referral to a Dermatologist and get the ball rolling for some proper treatment. This disease is manageable with the right treatment. It may take a few attempts at finding a suitable regime but there will be one. You shouldn't have to suffer.
As for offloading, don't give it two thoughts, that's what we are here for. We all have a story to tell and advice to give but remember non of us are medically trained it is just experience, good and bad. Nobody will judge you and if they do let Fred or a Helper know and the culprit will be 'recalibrated'. We are open all hours as there are people all over the world so don't worry about the time. In any case we can always wake Jim he tends to be a light sleeper  Thumb .
Have a good look around their is a ton of knowledge here for the taking and a healthy off topic section for some frivolous banter. Enjoy.
JohnB
Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 67,108
Threads: 3,898
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#5
Sat-08-10-2016, 14:30 PM
Hello Thing  Welcome to Psoriasis Club.

*I don't mind calling you "Thing" you chose it as your username so you're obviously happy with it, if not then please let me know and I'll change it for you.
Besides the Addams Family found him handy.  Big Grin

I'm pleased you filially found us through google, it does take a while as we won't pay for advertising. So we get there by merit and nothing else. You won't find any advertising here or requests for donations, and as you have found you can freely read the health boards without any annoyance. I do however recommend people to join us as they soon find out we are a friendly bunch, and we also have the members only section where even your Uncle Google can't read.  Wink

I have a beard, I was born with one.  Big Grin Ok I started growing it when I was about 20 as a bet and I've had it ever since, and I'm often found stroking mine.  91 Especially reading some of the post in [Group Specific] if you venture in there you will find I'm the only sensible one.

No need to apologise, we are here for people to have a good old grumble if they want. Some of us just enjoy supporting and/or listening to others, so don't hesitate to jump on in.

I don't have much more to add after what the others have said, but as you see we are all in agreement. You must go and see a dermatologist. They are better suited to find you something to control it, and you may be pleasantly surprised when you can get your hands out of your pockets next time you meet those ladies.  

Good intro by the way, I found it easy and entertaining to read.  

Regards.

Fred.
Turnedlight Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 6,147
Threads: 62
Joined: Apr 2015
Gender: Female
Location: Uk
Treatment: Skyrizi
#6
Sat-08-10-2016, 16:58 PM
Hi there nice to meet you! Are you a writer because that bit about Theresa May did make me smile..
I'm using nothing right now and I've got very pale skin with a leopard skin pattern in bright red.
I know what you mean about seeing other people with it - I once brought it up to someone with psoriasis when mine was highly visible too, but I quickly found out they didn't want to talk about it.
Hope you like it here!
Thing Offline Author
Newbie


Posts: 3
Threads: 1
Joined: Oct 2016
Gender: Male
Location: London
Treatment: Nothing right now.
#7
Sun-09-10-2016, 02:26 AM
Hello all,

Thank you for the warm welcome.  I read some of the replies earlier in the day but couldn't answer. I am awake at an unhealthy hour again. Wall 

I chose the name because, in my good moments, I like to think of psoriasis as some sort of super power. Like "Thing" from the Fantastic Four (don't tell me the thought he has psoriasis never occured to you as you watched the movie or happend to see a comic?). He's called Ben Grimm, so you can change it to Ben if you like. Smile

My wife is not too bothered by it and keeps coming up with her own cures "have you tried rubbing the skin of a lemon on it?".....she also once overheard people in a cafe talking about how they cured their skin condition (we have not established what sort) by pouring camel urine on it.  Of course, she ditched the idea once I explained the difficulties of finding a camel in London, getting hold of some of its urine and showering in said urine then later sitting on her sofa or sleeping on her bed. I will not lie, I was secretly tempted. The older kids take it all in their strides and only keep asking if I was in pain. When I used to put the Devobet on the face, they used to hate it because I always stopped them from giving me random kisses with the shout "no, no, I've got the cream on". The four year old thinks all these patches are injuries and keeps telling me to be careful when I "play".

I had medications in the past but they were all creams and scalp treatments. I wasn't sure what the long term impacts of all those steroids would be so I stopped.  Still, this time I've decided to tackle this thing once and for all. I made the first step by joining you here and you all seem VERY nice.

(I promise to post messages at a normal time in future). Big Grin
jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#8
Sun-09-10-2016, 14:38 PM
I'm enjoying your posts Thing .....if you are happy with the name I'll use it .... Big Grin

It's nice to know your wife comes up with things to try .... but Camel urine 85 ... s57 I myself had heard of many of the remedies, and for a while I spent a fortune on bananas as rubbing the skin on was supposed to help and I smelled like a banana for weeks as I gave it a good try......my dermatologist fell around laughing when I told her

I still think a visit to a dermatologist would improve your life immensely and stop you wasting away  Smile

You post whenever you're comfortable people are on and off here at all hours

pcwrite
Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,560
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#9
Sun-09-10-2016, 15:10 PM
No Jim NoNo

The camel-urine treatment is a very good one. Whistle
I have met people that had used it and I have never seen any psoriasis anymore on their skin. Mostly because I backed off so far that I couldn't see the psoriasis anymore and I avoided meeting them again as they smelled awful .. 84 Rolleyes

Poor Thing, what will he think know?
"What the hell kind of forum I got lured into?" may be one of his thoughts. Tongue

Just kidding Thing.
There have been tried so many weird Thing's to cure Psoriasis, but upto now none of them has ever helped. (nice name, Thing, you can do a lot with it).
So we over here tend to make a bit of fun out of it. Partly because making a bit of fun also enlightens our life. Smile
jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#10
Sun-09-10-2016, 15:22 PM
(Sun-09-10-2016, 15:10 PM)Caroline Wrote: No Jim  NoNo

The camel-urine treatment is a very good one. Whistle
I have met people that had used it and I have never seen any psoriasis anymore on their skin. Mostly because I backed off so far that I couldn't see the psoriasis anymore and I avoided meeting them again as they smelled awful .. 84 Rolleyes

Poor Thing, what will he think know?
"What the hell kind of forum I got lured into?" may be one of his thoughts.  Tongue

Just kidding Thing.
There have been tried so many weird Thing's to cure Psoriasis, but upto now none of them has ever helped. (nice name, Thing, you can do a lot with it).
So we over here tend to make a bit of fun out of it. Partly because making a bit of fun also enlightens our life. Smile

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