Thursday, 27 August 2009

My News

I have had a real battle on my hands suffering with psoriasis in fact I don't think I have one part of my body that hasn't got a patch of sore cracked skin, from the top of my head down to the soles of my feet.
I went to see the consultant who was very nice and gave me a carrier bag full to the brim of potions and lotions to apply but in reality said that I needed Ultra Violet light treatment but unfortunately there is a waiting list for it.
After waiting a few weeks today I got the call to say that they now have a place for me and that I will start my new PUVA treatment on 8th September.
For those that have never seen what it is like to live with Psoriasis I've added a few pictures of what my skin is like at the moment.
it is supposedly caused by stress I had mine pretty much under control until Dad passed away last October


44 comments:

Anonymous said...

Hi JAK,
wishing you a speedy recovery.

Katie Renz said...

Wow Jak... I have to say it and I know you already know it, but it looks bad. I am so glad that you will be getting some treatment for it. Maybe more time with that little grand baby will help the pschy too!!!

SharDon Exclusives said...

Dear girl, I hurt for you! Does a tanning bed have the same lighting? I am clueless about that sort of things. (Obviously!) (Maybe someone could come up with a bed that had the right lights & you could hook up to ear phones with soft music and a grand baby sounds. I have insomnia from stress but that is SO much easier to deal with than yours. You are in my thoughts and prayers, Sharon

Sue from Oregon said...

Hey my brother has this too and he emptied out a closet in his house, lined it with foil and bought the special lights and made his own treatment area! Good luck!

Peggy Maier said...

So sorry you have to suffer with this! I pray your treatments will clear it up quickly!

Tertia said...

Thinking of you and sending you lots of prayers and hugs.

Anonymous said...

Ouch!! so sorry to see you going through that and so glad you will get your treatment soon.

Patti Jo said...

You must be miserable! Don't know if the tanning beds do have the same lights that you will be going under, but a friend of mine used the tanning beds and it really helped. Besides that, she had a nice tan and looked like she just got back from a nice vacation! Will pray for a speedy recovery!

Leigh said...

I hope the treatment works for you and quickly.

eva said...

My friend suffered, even wanted to die. Unsuccessful treatment, nerves, and she threw herself under a tram.
But managed to stop the tram.
She was in stress dolgo.No saved her man, who was living with her.
And she got sick of the fact that her husband was a tyrant.
She told me about it when I said that I had never seen such a beautiful skin like hers.
Good luck!

Pamela said...

Omg, Jak you poor thing. I do hope your treatment happens soon and that it gives you the relief you so badly need. Keeping you in my thoughts and prayers, and sending gentle hugs.


Pam x

Linda Horn said...

Hi Jak. I know what you're dealing with, have it my self. I just want to tell every one, who was wondering about a tanning bed. A tanning bed has no effect at all on psoriasis!! But in the summer, one can get better out in the sunlight. This special treatments for psoriasis doesn't make the skin glow like in an tannning bed, but it's a terrific treatment for thoose - like Jak - who has a lot, all over the body.

I'm lucky, I just have some small spots here and there. Of course them bother med sometimes, but it's not so obvious to anyone.

Hoper you get better with the treatment Jak, both you and I know that your'e not to be completly recovered. But I hope that the rach will fade away a bit.

Sorry if my English isn't so good, hope you all understand med anyway.

Many hugs to you Jak, in your fight against the psoriasis!!!
/Linda

Ali said...

Jak I totally understand what you are going through i too suffer from Psoriasis and also have Psoriatic Arthritis. My FIL was like yourself last year that bad he had to be hospitised and the only thing that helped was the PUVA treatment. Hang in there honey it will be slow but worth it. Sending you huge hugs Jak, please let us know how you are doing.

Anonymous said...

Hi Jak
have you tried methotrexate
Ive been on it a while but you have to have your blood taken once a month it seens to be working
good look

Lesley said...

Oh Jak I feel so sorry for you, I am in my late 50s and all my life I have suffered with Eczema, it's not the same, but from the same family. Yes, stress worry, coming into contact with certain things (polish was one of my allergies) also certain foods can spark it off, Jak I don't know if this will help, I expect you already know anyway but, any dairy product is a killer for me especially cheese! I do wish you well and you know that there are lots of your crafting buddies out there all rooting for you. Hugs "OUCH", keep your chin up,all the best Lesley.

Mad Mary said...

Oh Jak, that looks so painful. I am so glad that you are going to be getting treatment soon. One of my aunty's is on methotrexate for hers and it does help. Take care lovely lady .

Lots of love

Mary xx

all-tea-towels.co.uk said...

Jak,

You are in my thoughts, and I hope the UV light treatment will greatly help you.

take care.

Tracey said...

hi jak.
i just had to stop by and tell you my 13 year old daughter lauren Had and i repeat had the same condition as you have.It is so lovely to now be able to say had you can imagine cant you.Hers came out after a very stressful time when we went to court for the custody of my 2 year old granson who had been living with us since he was 6 weeks old. we won thank god.But it was so stressful.I didnt relise how much she had took on board. A week or so later spots appeared i thought it was chicken pox at first but no 1 month later she was covered as you are from the top of her head to her toes.The steriod creams was not working and i was so worried about the side effects phisically and mentally.she handeled it is well im so very very proud of her.She had patches on her face as well.People would stare and sometimes ask her what was wrong with er skin at any age i think it is difficult to handle such a conditon but at 13 . she was great she knew she sun was the best thing for it so she would go out in just a strappy top and shorts she said she didnt care just wanted it to go away.
well we went to see a specialist at the hospital who started her straight away on the same treatment you are about to have. every 2 days she is at the hospital and 6 weeks later she hasnt a spot anywhere absolubility no where. it was such a joy to watch them disappear. so i just wanted to tell you her story so you know there is hope. She still has to go for another week or so to make 100 per cent sure.
Plenty of mouisteriser helps and special bath solution.When she started the treatment they gave her a stronger steroid cream to apply.But we didnt use it thoought if its going to go away the hospital treatment will do it and it did.
Jak good luck and i would love to know how you get on .

angel wishes tracey xxxxx

Millie said...

Jak, this looks as if would be devastating, painful & itchy?? I am so sorry you have this and hope the treatment gets rid of it.
Hugs, Millie..

Marge said...

Oh, Jak, I feel so bad for you; I'm praying your PUVA treatments work wonders for you, my friend!

Linda Peterson said...

Wow, not a fun thing to have. Bless you as you go thru the treatments and get rid of it really quick.

paola said...

You poor soul it looks just soooooo painful i am sore for you, my prayers are with you i just could never comprehend what you must be going through. G'ds speed to recovery.
well wishes love
Paola

Dawn Loring said...

Jak one of the girls I work with at Tesco has had this treatment and the improvement in her skin is un believeable. I hope it works as well for you as it has for her

Anonymous said...

Hi Jak, fellow psoriasis sufferer here... just watch the PUVA Jak, I've had it and it didn't really help me too much. Whilst you have it you have to be very careful about exposure to sunlight too.And how many times you repeat the treatment. Mine isn't as bad as yours but the splits I get in my fingers are agony. I mainly have it on hands and feet with a smidge in my hairline, so no perms or colours for me, lol, and I can't use household chemical cleaning agents or furniture polish unless I wear rubber gloves. Hope yours goes well Jak, it does look so sore.

Anna.

Anonymous said...

Hi Jak,
I am so sorry to hear that you are suffering again. My brother has pseriatic athritis(probably spelt it wrong) caused by psoriasis and has now had several ops. My mother bought an ultra violet lamp back in the 50/60's which really helped his skin. He was however the only kid in school with sunburn in January!
Take care, God bless
Lesley

Smiffy's Particrafting adventures said...

Hi Hun
Have the same problem but luckily mine is confined to my hands, feet and hairline. I know how debilitating it is. Some days you just want to chop off all the bits that hurt and itch just so you can have 1 day without the pain. Hope the UVA treatment works for you. It has a good clearup rate on most parts of the body (but not hands!). I took Neotigasan (sister drug to Methatrexate..or however they are spelled). It worked wonders but yucky side effects. Good luck.
Pam (with VERY itchy hands!)

Liz said...

Hi Jak

I have seen many such pictures as in the course of my business I sell a natural product range that fights the dreadful soreness, itchiness and reduces the plaques. I sell Pure Australian Emu Oil and Emu Oil Products. I can only suggest you go on line and read what we have to say about psoriasis and Australian Emu Oil, go to http://www.naturesnaturalbeauty.com/catalog/psoriasiscare.php. All I can say is it really does work, or so my customers tell me, and it is totally natural not one chemical in sight. Let me know if you need any advice.

Baukje said...

Oh Jak, you poor thing, that does look terribly sore, all three of my children have different degrees of this condition, my eldest daughter the worst, but nothing like yours, so I know a little of how you must suffer. I am a big believer in positive thinking, so I know it will work.

Baukje

Val said...

Hi Jak

I really feel for you, and hope that the treatment goes well for you.
Love and Hugs
Valxx

Linda w said...

My sons girlfriend has this bad also. She is now taking Humira with good results. She gives herself an injection once every other week. I hope your treatment helps.

Rita said...

Hi Jak, I don't suffer myself, but I'm so glad you are getting some treatment for this. It must be awful for you, just thinking of the itchiness itself sounds terrible. Sending you lots of Hugs and hopefully your condition gets cleared up soon. Rita xxxx

Norma said...

Jak that looks so painful.
I hope when your treatment starts
it works for you.
Good luck with it all

HUGS

Norma x

suan said...

Oh my! Jak, it looks like you are suffering horribly! I wish I knew how to make it better. You have so many friends here in the internet world and I feel certain that someone is going to offer some helpful suggestions. You need to de-stress and enjoy that new grandbaby! Just wait, when he starts talking and says "grandmum", all of your worries will melt away.

Anonymous said...

Oh Jak, I do hope the treatment helps your condition. I can empathise with you because I know of someone who had it as bad as you and he had to use the same treatment to keep it under control. I do know how painful it can be. So think positively.

Alice (beemer)

Anonymous said...

Ooooh Jak that looks painful! I'm so glad you will be able to receive your treatment soon and hope it works quickly for you. Viv xx

KraftyKoolKat said...

Ouch hunnie that looks painful I hope they can do something for you soon. Cathy xxx

Only by His Grace said...

Oh! that looks so painful.
My prayers go out to you.
Hugs marion

Anonymous said...

Hope the treatment works for you Jak it looks very very painful,good luck and take care.

Hazel x (nuttylady)

Cazzy said...

You poor thing, I hope the UV does the trick.

Cazzy x

Helen said...

Poor you Jak- I had no idea how you suffered with this complaint. I do hope the treatment works for you.

Helen

Nicki said...

Ouch Jak, that looks sooo painful! hope your feeling better soon hun
take care
Nicki
xxx

Bella said...

Hi just passing by...

I also have psoriasis but a very very mild form. I didn't know that UV treatment helped. My doctor said there was not much to do, but baths in salted water seem to help. And yeah, stress and nerves make it worse.

"Luckily" I also have atopic ecyzema which seems to keep the psoriasis in control and vice versa -- it seems that the antibodies of both disorders are antagonists.

However the sores from your fourth photo are very similar to my ecyzema sores.

Hope you get better well.

Heather said...

How awful this must be for you! I read these comments, wondering if anyone would post this (I did notice one mention of Humira). I have another form of arthritis and have monthly infusion treatments. I say this because next to me are a few who suffer from the same as you and they swear the infusions have virtually 'cured' them. It's worth looking into (I'm in Cdn). The name of the drug is Remicade. Look it up and gather as much info as you can- from whatever source possible. Even a blog!
Best of luck to you! No one should have to suffer and clearly you are. Please take heart and feel better soon :)
Heather in Montreal

Chris (Wellnifty) said...

Oh Jak, that looks so painful, my hubby gets psoriasis occasionally but no where as bad as yours looks. Hope the treatment helps

Chris xx