This is getting silly now....

[mickyfinn007]

Hi Jess, I can sympathise with everything you have put in your post, when I first came across this site over a year ago, I was at the end of my tether.
After chatting with some of the regular people on the site, I realised I was not alone anymore.
I have had Psoriasis now for about 14/15 years, and I went through a stage where I didn't think there aws anymore treatment out there, let alone be anywhere near normality again.
After trying numerous creams and potions that the GP gave me, I really thought I was battling a lost cause, but then the lifeline came, and that, believe it or not was this site.
After reading about different types of treatment that people were receiving, I did some extensive research of my own and and got referred to my now regular Dermatologist.
After Fred advising me how to work with the Dermatologist, I finally started telling them what I wanted done, and now I am finally starting to finally get results.
I was always stressing and going through bouts of depression, but after receiving advice from some of the members on here, my stress levels dropped dramatically, which in turn helped my treatment.
After the creams, I was referred for topical treatment, where I attended out patients 4 days a week for about 6 month's, what a waste of time that was.
After this I was referred for UV light treatment, this worked in the short term but after 10 weeks it was all back again.
I have recently started on Methotrexate, which is a tablet dose once a week with daily Folic Acid.
This treatment has it's pro's and con's, but as with anything, it's worth a go.
As Fred mentioned, get yourself referred to a Dermatologist, and YOU tell them what you want.
Also, do your own research, if you are not sure, ask on here, someone will always help you out, believe me, I know.
In the mean time, try not to get too stressed, it doesn't help, look to the next step and with the help of us all, we can get you through this.
I wish you all the best for now, and good luck, there is a light at the end of the tunnel.
Regards Micky.

[JustJess]

Thanks Micky, I've only been on here a short while but it's already helping and I certainly don't feel alone in this anymore and that's really important. It sounds like you've had a really long road with this thing I hope the Methotrexate helps improve things and that the side effects are not too bad, Jess x

[mickyfinn007]

Jess, I've started a thread on Methotrexate to let you all know how I get on with it.
This will be an ongoing thread with regular updates, so everybody knows what is going on.
Believe me when I say that STRESS does not help, because I have done this with different stress factor's, and things only get worse if you dwell on it.
Take care for now, and if you get stressed, talk to us on here, we really can help.
Good luck
Micky.

[JudithH]

Hi Jess. This is the first time I have ever joined a forum to write anything but your story made me so sad.

I live in Brisbane Australia and have had psoriasis for 49 years since I was 7 years old. It sems to recede at times (eg when I was pregnant with my 4 babies 30 years ago) and at other times it is in full blown rage.

My skin splits at the top of my buttocks and under my breasts making wearing a bra very uncomfortable but not wearing one worse since the skin gets smelly and disgusting. It hurts to turn over in bed as everything seems like it is splitting.

However, I have found some things that help me control it.

1. I use a mixture of oil (and sometimes sorbolene cream or any other body cream) and sea salt. Keep it in the shower and massage your skin GENTLY before turning on the water. It does really sting but the salt acts as an antiseptic and dries the plaques while the oil then moistorises. I use this all the time. When travelling overseas or even in Australia, I make up a mix of any kind. Attention Hotel Room Cleaners:-I am the person who leaves the saucer of salty, oily, creamy gunk in the shower. Not sorry.

2. Sun, salt water and the beach. Every chance I get, I go to the beach. Not possible in London I realise - I think that is where you live from reading the thread. I massage my skin with the soft sand and rinse off then sun bake. At present I am too busy with work to get away and my skin is in a bad place.

3. I see a dermatologist every 6 months as Australia is the skin cancer capital of the world. Even he recommends the sun. We have big discussions about psoriasis v sun cancer and he says to spend 10 minutes a day or 1 hour a week with as much skin exposed as possible. I use heaps of sun block on my face which has stayed quite soft and nice given 40 or so years of sunbathing.

4. Stress is a trigger for me. Can't do much about that but I do take antidepressants for depression. Doesn't help the psoriasis.

5. I too really hate it. It is painful, hideous and awful. I suffered terribly at boarding school because of it. My parents shaved my head when I was 7 and first got it because my mother said it was ringworms. It has really affected my confidence but I have managed to run my own business for 8 years.

6. I dread my grown up kids getting it and now I have grandchildren I freak out everythime they have a patch of dry skin on their precious little bodies.

7. One of my sisters has it badly as well and now she has psororiac arthritis which is ruining her life.

My husband doesn't seem to notice it and is great at putting cream on my back when I have the courage to ask him which is not often.

I feel so sad for you and understand some of what you feel. I think if the medical world knew the psychological impact of this afflication, more would be done. I pay taxes too.

Please accept a hug from the other side of the world. Judith xxxx

[JustJess]

Hi Judith,

Your hug is greatly received, so thank you very very much for that and for sharing part of your story!

You're right, there isn't much chance to getting to the beach where I am!, while I feel more relaxed about things as the autumn days get cooler and it's easier to cover up, I have made a promise to myself that from the Spring I'm going to make sure I get atleast 10 - 15 mins a day in the garden with my arms out!...I'll work on my legs the following year! lol

It's inspiring that you have run your own business for 8 years, I have also recently registered self-employed making and decorating cakes. While it's an odd thought with this disease I can pick my work and take a break when it's bad and obviously take food hygiene standards really seriously the rest of the time. At the moment, I'm happy because it gives me something to focus on but I can feel myself not really 'going for it' because of the psoriasis, I'd love to run cupcake classes for children or exhibit at wedding fayres but am not ready for standing with all eyes on me just yet! On a plus side I made some cakes last month for Peter Andre who is from Australia and now a successful celebrity/pop singer over here and they were featured on his reality tv show which is on national tv so that was pretty cool! I'd be interested to hear if you've overcome any situaitons with your business where psoriasis affected your confidence and how you overcame them

I'm sorry to hear about your sister, I don't have any arthritic symptoms so far so I'm keeping my fingers crossed that I don't get that complication.

What kind of oil do you use in your ointment and is the seasalt rock salt or the finer kind?

You're totally right about the medical profession and them not taking the psychological impact seriously enough. It's bugs the hell out of me!!!

Thanks again for your kind words, I hope you find the forum as useful as I am. I don't feel alone anymore and we're all here to help, support and listen to each other and that can only be a good thing!

All the very best and sending you a big hug back!
Jess x

[JustSuzy]

Hi Jess,
I have now written 3 pages of answers to this thread and erased them,lol. I tend to get carried away now an then.

1st a big hug for you...


I think everyone with p feels the same as you at one time or another. It is a constant battle to find something that works for most and even that changes after awhile.

My very best advice to living with this disease is...
1)Acceptance-It is going to come and go throughout our lives and has no cure.
2)Look around and know it could be so much worse.

Life goes by so fast and the best we can do is try and enjoy each moment and try and not let the p define us or control us.I have many regrets about what I missed using p as an excuse.

As far as relationships go with or without p the best rule is friends first then the rest works itself out.

Of course it is easy to say but much harder to live.


Suzy

[JustJess]

Hi Suzy,

Thanks so much for your reply and the hug (love cuddles! ) I'm starting to feel in such a better place than I was when I joined the forum and your advice is great, totally agree I've missed out on too much stuff and am reeeeeaaalllyyy trying to force myself to get back 'out there' and claim back my life even in small ways. Good advice re relationships too. Not sure when it will happen but am open to the possibility so we shall see!

Completely accept there is no cure for this evil little disease and am trying to work on accepting me as I am now and trying to stop mourning the loss of the old me. Tough, but I'm trying. This site helps so much with that! Starting to think of myself as a Psoriasis Fighter rather than a Psoriasis Sufferer!
Big hug back to you

Jess x

[Fred]

Completely accept there is no cure for this evil little disease and am trying to work on accepting me as I am now and trying to stop mourning the loss of the old me. Tough, but I'm trying. This site helps so much with that! Starting to think of myself as a Psoriasis Fighter rather than a Psoriasis Sufferer!

Great news Jess, you keep that positive attitude. and remember your not alone.

[JustSuzy]

Hi Suzy,

Thanks so much for your reply and the hug (love cuddles! ) I'm starting to feel in such a better place than I was when I joined the forum and your advice is great, totally agree I've missed out on too much stuff and am reeeeeaaalllyyy trying to force myself to get back 'out there' and claim back my life even in small ways. Good advice re relationships too. Not sure when it will happen but am open to the possibility so we shall see!

Completely accept there is no cure for this evil little disease and am trying to work on accepting me as I am now and trying to stop mourning the loss of the old me. Tough, but I'm trying. This site helps so much with that! Starting to think of myself as a Psoriasis Fighter rather than a Psoriasis Sufferer!
Big hug back to you

Jess x

You are a fighter! One day at a time.


Have a super day!

Suzy

[Hanna]

1. I can't take my daughter swimming. (breaks my heard because she always asks me if I'll be able to take her when my skin is better to which I have to say 'yes' because she's desperate for me to go with her even though I know it'll never be better enough to do it.