Author Topic: Me & P'  (Read 1624 times)

0 Members and 1 Guest are viewing this topic.

Offline *Niki*

Me & P'
« on: May 18, 2008, 11:15:39 PM »
Me And P’

He first entered my life when I was 7 & didn’t make much of an impression on me infact he was quite a mystery.  I didn’t know why he’d come or what he wanted.  He was just “there.”

He was patient, he knew what he had in store for me but I was blissfully unaware until Christmas 1975. I’d been ill with Chickenpox but they wouldn’t go little did I know he’d chosen his moment to enter my life again, only this time he wasn’t about to leave without a fight.  He was all encompassing, ruined my Christmas & I hated him for it.
I was young & confused, I didn’t know why he’d chosen me & I wanted him to leave me alone.
He finally disappeared from my life in the spring of 1976. I was so happy to see the back of him & thought I’d never have to see him again.  How wrong I was.

It was 1979 when he visited me again & ruined my school photo’s, I was distraught but I couldn’t have imagined what was to come, he was to do far, far worse.

Autumn of 1980 he was back & he was angry. This time he was intent on killing me, he almost succeeded but I was young & fit.
He changed the way I looked, the way I thought, he put me in a wheelchair & took my hair. I despised him & everyone around me for allowing him to do this to me.  I found an inner strength & slowly I grew strong, he grew weak & I was elated that he‘d gone.

Unfortunately he never stayed away for long, he visited me every year turning up like the proverbial bad penny.  With each year that passed I got to know him better; knew his traits & knew what he’d come to do, I learned to prepare.
I acquired some powerful allies, they helped me in my fight. Some turned against me, others helped me yet he always seemed to grow in strength & my powerful allies became powerless against him leaving me to fight him alone.

He’s back in my life again; gaining strength with each passing day while I become weaker. He’s a parasite; he feeds on my misery, adores my pain & rejoices in my suffering - I loathe him; this partner of mine!












rachelD

  • Guest
Re: Me & P'
« Reply #1 on: May 19, 2008, 12:48:40 AM »
Nikinak,

Words fail me. Are you receiving any treatment for it?

I know how desperate I was when my p flared up really badly and how it made me feel as a person. Be strong.

Offline *Niki*

Re: Me & P'
« Reply #2 on: May 19, 2008, 01:10:15 AM »
You are not allowed to view links. Register or Login
Nikinak,

Words fail me. Are you receiving any treatment for it?

I know how desperate I was when my p flared up really badly and how it made me feel as a person. Be strong.

I've just had the first lot of tests done to hopefully start Humira but i'm not allowed any topical treatment so am blathering myself in diprobase 3-4 times a day. 
This is the end of my road having had many, many topicals, phototherapy (am now photosensitive) almost every systemic & 3 biologics.  Infliximab was fantastic but someone didnt note i have ANA's ( i should never have been given it) & it had to be stopped because of the infections i got but i'm hopeful Humira will work  :)
« Last Edit: May 19, 2008, 01:27:32 AM by NikiNakiNooo »

rachelD

  • Guest
Re: Me & P'
« Reply #3 on: May 19, 2008, 01:15:52 AM »
I hope it will work for you.

I have gone down most routes.

Done the topicals, uvb, puva, mtx, cyclo and now on enbrel . worked fab the first time not so good the second time so started on ditrocream as well a few weeks back just on legs and suddenly all p has gone from all over.

I guess I am lucky that the enbrel is stabalising my p.


Offline *Niki*

Re: Me & P'
« Reply #4 on: May 19, 2008, 01:28:56 AM »
Thanks & i'm glad enbrel's working for you   :)
« Last Edit: May 19, 2008, 01:31:10 AM by NikiNakiNooo »

chrisis

  • Guest
Re: Me & P'
« Reply #5 on: May 19, 2008, 08:24:55 AM »
Nice to hear from you again.
So sorry youve flared so badly. Its summer isnt it? The sun is a powerful enemy to folks like us. I have a special  polysheeting on all my windows including car windows as the bad uv rays can pass through ordinary glass. All totally useless of course when I just nip out to put the washing out or something with no gloves on. It only takes a minute, but thats long enough to get me. I also have about 20 bottle of Garnier stuff that you recommended last year placed in strategic places by the doors so I'll remember to use it. I'm getting a bit forgetful these days.
Heres hoping the next treatment is the miracle for you.

Chris.

Offline *Niki*

Re: Me & P'
« Reply #6 on: May 20, 2008, 12:14:06 AM »
You are not allowed to view links. Register or Login
Nice to hear from you again.
So sorry youve flared so badly. Its summer isnt it? The sun is a powerful enemy to folks like us. I have a special  polysheeting on all my windows including car windows as the bad uv rays can pass through ordinary glass. All totally useless of course when I just nip out to put the washing out or something with no gloves on. It only takes a minute, but thats long enough to get me. I also have about 20 bottle of Garnier stuff that you recommended last year placed in strategic places by the doors so I'll remember to use it. I'm getting a bit forgetful these days.
Heres hoping the next treatment is the miracle for you.

Chris.

Thanks Chris  :)  I've flared because i have no drugs to control it  :(  Tacrolimus worked wonders when i first had it in 99 but had to be stopped because of kidney involvment & has left me with nephritis.  I tried it last month but am now allergic to it.
I have everything crossed that i'm ok for Humira & hope the Garnier works for you too - mines too sore at the mo to put it on so i'm in sweatshirts but that's fine because i'm so cold all the time  ;)

Offline SJ

Re: Me & P'
« Reply #7 on: May 20, 2008, 08:15:18 AM »
Empathy and love from me...that is exactly how I get if I don't 'control' it with systemics. I have tried alternative remedies, but once it gets past a certain point, I know I have to get medicated because I just can't handle the psoriasis, physcially or emotionally. I reckon I deserve a medal for doing Pagano for six months and suffering  ;)

Hope Humira comes through - I suggest making a 'nuisance' of yourself by calling everyday to see how it is all progressing....

 :-*
« Last Edit: May 20, 2008, 10:46:11 AM by SJ »
You are not allowed to view links. Register or Login

Offline TrishR

Re: Me & P'
« Reply #8 on: May 20, 2008, 08:59:24 AM »
God Nik that looks so sore.  I really shouldn't grumble about mine.

Fingers crossed for you that the Humira is approved and started very soon.

 :-*

Offline *Niki*

Re: Me & P'
« Reply #9 on: May 20, 2008, 11:52:31 PM »
Have told them today that i cannot cope just using moisturisers & that i wasn't sure the trial was for me, to which the clinical trials assistant sed "hurry up & make your decision because we have others to see"
OMG i was mortified, all they are bothered about are facts & figures. I am a person not a number on a piece of paper & made my thoughts known.  This is my life, not a game & i am in agony, can't get diprobase because of a prob with suppliers & just feel so so ill  :(

I said if i could be admitted then i would continue, this apparantly has not been received well with the drug company, it is seen as a "severe episode." 

I don't have anything else but tbh i now couldn't care less about the drug, i have never allowed my P to rule my life and atm it is  :(