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Treats from an Objectivist Flaker in New Zealand
from Ross

Hi Ed.  Thanks for your wonderful site. I've just discovered it quite by accident as I've never been a great seeker of information regarding P other than that which my derm has supplied to me.

I'd like to relate my story in the hope that it may offer some support, information, and perhaps hope, to my fellow flakers.

I live in South Canterbury, New Zealand, which is on the east coast of our South Island. For those of you who don't know, NZ is a country about the same size as Japan, the UK or the state of California. It has a temperate to sub-tropical climate and is 2,000 miles east of Australia. I have lived in the same area all my life. The climate is quite dry in both winter and summer and ranges from mild (8-12 deg C) in the winter to warm (20-23 deg) in the summer. I was born in 1963, and of this writing (Jan 03) I'm 39.

I first developed P at the age of about 7 or 8. It occurred as a patch on my right lower leg and only on the front. We were required to wear uniforms to school and for boys that meant shorts. I was lucky in that we also had long socks which I could keep pulled up to just below my knees to hide the rash. I used to put a very large sticking plaster over my P when I went swimming. Treatment for my P at this time of my life was coal tar creams, Betnovate and later Dermovate.

At about the age of 10 or 11, my P increased in severity. It spread to my scalp, the groin and the trunk. It was particularly bad during my teen years and I was hospitalised for intensive UV treatments and therapeutic baths. I did a year of high school by correspondence and this had a profound effect on me in my later years. Back to that later. It was in my late teens after leaving school that my first very bad flare-up occurred. Seeing your skin go from comfortable and manageable to a vision of hell is not only physically disruptive but psychologically distressing. I'm pretty sure (although my memory is fuzzy here) that this is when I first tried Tigason (oral retinoid). I had a very good response and my P basically went into total remission for about a year.

So, through my 20s and 30s, I have experienced a pattern. Tigason treatment, almost complete clearance, slowly worsening spotting and plaques, then sometimes a vicious flare-up followed by another course of Tigason. This is a 2 to 3 year pattern. So since my late teens I have had around 7 courses of Tigason.

The last 4 years have been perhaps unusual. I had my last course of Tigason exactly 4 years ago. I am now a week into my current course. In that space of time I have experienced a very slow increase in the severity of my P. Starting with the usual problem areas of scalp, elbows, knees, groin, it has spread to my entire body. However, it's been in a very slow, measured way. My back is not particularly bad or my chest or abdomen. In fact, at other times in my life I would have classed my current level of P as a troublesome annoyance. However, I've got less patient as the years have gone by and I decided to take a course of Tigason before I experienced a flare-up. My hope is that I haven't pre-empted the situation. That is, I'll finish the Tigason, my rash will be very good, but then two or three months later I will get the expected flare-up regardless. It will be interesting (eek!).

I'd like to mentions a few specifics:

Social contact/Mental well being

I had the normal measure of friends as a young boy and early teenager. However, as my P got worse with age, I shied away from making new friends and for a couple of years became a virtual recluse, only having contact with my family and others who were essential to my well being. These effects have stayed with me to this day  although I don't consider myself to be schizophrenic or manic/depressive. (I've never seen an analyst or ever had the desire/need to do so. I fully understand the solace that many flakers may find in having a professional shoulder to lean on, but I have never felt that desperate.)

Sex/Intimacy

I love women. I love sex. I have no Catholic guilt about it at all. But, it has been awkward. It's been frustrating . It's one thing for your partner to tell you that it's Ok and to tell you it's not an issue (and you may believe them completely) but it's quite another thing to FEEL that way within yourself. We are islands within ourselves and another person's comforting words can only go so far. It's not just the physical aspect (the itch, the pain, the tender groin and genitalia) but also the second-guessing of your own desirability. Attractiveness is an aspect of desire. Non-flakers may feel bad about sex first thing in the morning with puffy eyes, bad breath and messed hair, but try it with scaly skin, prickly itch, raw privates, etc and see how bad you've got it then.

But, I've leaned one important thing with regards to this subject. I've never had a one night stand or a chance encounter. Never. And, it's obvious why not. I have to get to know someone first. I have to let them know me. To know that I have P and that it is a defining force in my life. Only then can physical intimacy take place. And you know what? It has always worked for me. I have never had a bad experience where  my partner has said "Yuk! What's that! What's wrong with you!" I have always had women who understand, accept and, I believe, genuinely disregard my P as a downside. I believe it's about honesty, courage and self-esteem. The honesty to tell your partner up front. The courage to deal with her reaction. And, the self-esteem to withstand the awkwardness and pain of a possible rejection. The only other choice is heartache and celibacy.

Treatment/Severity

It's fair to say, that up until now, Tigason (now NeoTigason) has been a near miracle drug for me. I have taken it 7 or 8 times in the last 20+ years and each and every time it has been a wonderful relief. I take 35mg for 6 weeks and then 25 mg for another 6 weeks, making a 3 month course. I usually notice a marked improvement (thinning of the P, fading) within 3 weeks and almost complete eradication within 6 weeks.

I have not experienced any bad side effects. I have dryness of the mouth and lips, so I use a lip balm and drink water. I can't say I've been aware of any muscular pain, specific headaches or other indicated side effects. I have not had a bad liver function report. So, let's do the math: in the last 20 years there have been 1040 weeks. I have used Tigason for 48 of those weeks with mild side effects. Seems like a great cost-benefit equation to me. Now, I have always been in indoor employment, but now I am outside in the sun for at least 6 hours a day. And, it's high summer in NZ with 28 deg highs and cloudless days. Tigason can (I read) cause dermatitis after strong sunlight exposure. So, I plan to wear wide brimmed hats and apply sun block liberally to my exposed arms and neck at all times. I'll report back.

Now, I could have taken Tigason at many other times but I've always considered it a drug of last resort. I, like many others I suppose, tend to live with my rash as long as it is not extremely aggressive. So, for the last few years I have used Daivonex ointment and cream for the body and mild coal tar in aqueous cream mixed with a low dose steroid (elocon, betnovate, etc) for the scalp, face and groin. These topical agents are only effective as maintenance/relief treatments. They will do NOTHING for me during a flare-up. However, having said that, I have found Daivonex to be quite interesting in it's effect. My arms (but not the elbows) and hands seems to respond very well to a stop start regimen of Daivonex. I notice a fading and thinning over a 7 day period with a mild peeling around the edges of the patch/spot. This is followed by a settled period of another 7 days after which time the rash flares in that area again. Some smaller spots (2-4 mm) can be knocked off completely and leave a pigmented stain like a freckle. Funny old thing the skin, eh?

I have had UV treatments on several occasions and these have always been beneficial. When I lie outside I am careful of too much exposure. Once, I was burned on my arms and this caused my P to flare up quite badly. However, if I have been burned on the neck, scalp or face, this seems to be no problem.

I have had P everywhere. For  few years it was quite troublesome on my hands and feet, palms and soles. I also used to get it worse on my face and neck, but not anymore except for a few spots which seem to respond well to mild coal tar/steroid application. Nails are always a problem, especially the thumbs for some reason. Two of my flare-ups were pustular in nature which was very frightening, but that was about ten years ago. Fingers crossed!  Twice I've been virtually incapacitated where it was painful to walk, bend limbs, etc.

Triggers/Precursors/Indicators

This is the way I look at it: what's generally bad for the skin is going to be generally bad for my P. Nes pas? The theories about stress, alcohol and diet have never seemed to be obvious triggers for me. I'm not a smoker, although at times I do enjoy a cigar. I like beer, wine, spirits — I'm an equal opportunity drinker. I eat anything I like, although I'm not a heavy consumer of sweets, biscuits, ice cream, etc. I eat spicy food as often as possible, etc. I have never noticed any immediate or delayed reaction from diet or alcohol consumption.

Stress? Well, all I can say is that in the last 4 years I've undergone enormous stress with financial, personal and relationship difficulties and my P has been reasonably well behaved, with, as I've said, an extremely slow increase in severity, but no flare-ups.

I generally know when a flare-up is going to occur. I get irritable, my healthy skin feels tighter, different and I'm generally a little uneasy. Of course, that can happen when I see a picture of Hillary Clinton, so go figure :-)

Personal Philosophy

Psoriasis has made me who I am. It's that simple. And here's the big news: I wouldn't want to be anyone else or see the world from any other perspective. Despite the pain, the frustration and the anger that my P has caused me, I have realised for years that it also saved me from an "ordinary" life. Yes, of course there are many times when I long for the FREEDOM of an unblemished skin, but let's face it, you can have perfect skin but suffer a much worse physical ailment, or be an EMOTIONAL cripple. I have never contemplated suicide or an anti-social crime-ridden lifestyle. I've made mistakes, BIG mistakes, but so do non-flakers.

When I was a teenager, I was introverted because of my P. So, I read. Voraciously. I taught myself. In fact, all that I know that is vital to my life, I have sought out and learned by my own effort. I know what I believe and I can defend my beliefs with rational argument. I have an extreme distaste for shallowness and vacuity. I learned early that beauty IS only skin deep, and that the inner person, what they believe, what they do, is what's really at issue. Sure, we're all attracted to beautiful people, but there's an inner light that shines from a truly spirited soul and that has nothing to do with transient beauty. Trust me, I've spoken to some very vain and empty people in my life and there is nothing more repugnant.

I learned to seek out truth and substance. I had to expend so much emotional energy on coping with my P that I had no time for anything else. I still don't. I have few genuine friends but the ones I do have appreciate me as a person as I do them.  I have little time for moaners or those that are always claiming or feigning victimhood. Yes, each to his own, and we can only see the world from our own perspectives, but I believe that if you can cope with your situation (whatever that may be) then it is your ethical duty to do so without burdening others. Yes, we can all use a shoulder to lean on or a friendly ear, but that is far removed from the cry babies and emotional leeches we see so much of in our societies today. I know there are people in this world worse off than I. What's a little pain and awkwardness compared with the horrors that some people face daily. Stand up! Have character! Support  those who truly need it. Don't moan about your life and your life will be better! You will be stronger, more resolute, more benevolent and more understanding. Don't give in to hopelessness and victimhood. You're still a human and this thing won't KILL you. When your rash is bad, you just need to stay focused, count your blessings, rely on your strengths, grit your teeth, hold on, take some shit and get through it.

I am an atheist. I always have been. And I'm glad of that. I could have spent my life praying at an altar of hopelessness, but I realised that my P is nothing more than a genetic glitch, a mistake, a cruel accident, and not the result of some spiritual failing or curse. And, it's the hand of man and science that will eradicate it, not religious pomposity.

As I said above, my introspective ten years caused me to read voraciously. By a completely unexpected and circuitous route I came across a philosophy called Objectivism and it's founder Ayn Rand. It was psoriasis that caused me to find this philosophy and it is this philosophy that has given me the insight and strength to survive it without becoming bitter and twisted. It is a rationalist, libertarian, reality-based philosophy and I won't burden you with it's fundamentals here. There are many sources and sites for info on Objectivism but if you're interested then you might like to check out this link:

http://solohq.com./

I hope it helps. You might even find some of my writings there :-)

The Future

Now, I can't say what the future will hold for my P, but worst case, if it stayed in the cyclic state it's been in for the last ten years then I'd be a happy person. It's a thing you live with. It is you. It defines you whether you like it or not. All you can do is learn to live with it and not go nuts. My biggest fear (when I consider it at all) is that it will change it's nature, it's modus operandi, so dramatically, that I will have to readjust my whole lifestyle, treatment to cope with it. I'll just have to wait and see.

Much of what I've written will be familiar to many flakers. Some of us suffer more, or less. But we all have this thing in common and I think it's wonderful to have a forum such as this. Thanks Ed !I wish you all well and hope that 2003 is a low-flake year for everyone.

Regards, -Ross

PS: if anyone wishes to contact me for an email chat then I'd love to hear from you.   [email protected]

*****

Ed’s Response:  Every other month or so I get an email (or several) from people wanting to know if “moving somewhere else” will help their P.  Here in the U.S. there has been a surge of New Zealand tourism promotion (playing off the back, I think, of the Lord of the Rings movies that were filmed in New Zealand).  After seeing those promos, my old longing to visit NZ gets rekindled, and while it would help to think it’s a place that cures P, it isn’t.  Your testimony is one of a handful in the archives here and certainly an eloquent presentation of your flaking life in “paradise.”  Not that this fact mitigates my desire to visit.  I’m flaking as it is — why not take my flakes and myself to someplace where I can do the same but in beautiful surroundings?

Your email needs no embellishment by me, Ross, so I won’t detract by trying. 

Must say, though, how interesting it was to hear you reference Objectivism. Late last year I re-read Ayn Rand’s Atlas Shrugged, in its special 35th Anniversary facsimile printing from the 1st edition (1957/1992).  This edition has a special introduction by Leonard Peikoff (Rand’s editor and executor) in which he quotes extensively from the diary Rand kept during the years she was writing the novel.  Collectively, these snippets are two things: an inside glimpse of Rand’s particular creative process, and the seminal thinking behind her philosophy called “Objectivism.”  I hadn’t thought about objectivism in thirty years and for weeks after closing the back cover on Atlas Shrugged I found myself comparing my 1970s reaction to the precepts of objectivism to my current reaction, which is different in many ways.  It’s an exercise in reflecting on one’s experience and maturation from an unusual angle (and, I’ll add without expansion, a not-always-flattering reflection).  For the record, this 35th Anniversary Special Edition of Atlas Shrugged is hardback, 1168 pages facsimile from the 1st edition, published by Dutton (Penguin Group), ISBN 0-525-93418-9.   

Thanks for sharing, Ross and we hope to hear more from you.  -Ed

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