Mar-Apr '03 | briefing | mail | don't say this | flakers' jargon | flaker creativity | articles | other places | archives | send mail | ed dewke | legal stuff | order | search | 2001 Ed Dewke

Pretty in Pink
from Kathy L.

Ed, well I have spent all day on the web, which I do every now and again, looking for the miracle cure for my psoriasis. I must say your website is by far the best one I found, even if you didn’t have the miracle I was looking for.

I, like most others, have tried starving myself with cleansing diets, used creams, emollients and assorted disgusting tars and treatments. What works? Sunshine. Living in Oregon it is a commodity I don’t have much access to. I use olive oil when I am wet and just getting out of the shower. It keeps the lesions from cracking and it is cheap. I don’t have medical insurance, but even if I did, after reviewing all of treatment options I have read on the web today, my guess is that I have saved myself a lot of money by not paying educated people to experiment on me. Well, I guess they do practice medicine, I just don’t want them practicing on me.

The only time I have been cleared is once when I was in a horrible auto accident and was in ICU for 12 days. During that time my family said they literally saw my psoriasis disappear before their eyes. When I finally regained consciousness with 2 fractured legs, broken hip, fractured pelvis, my first words to the doctor were, “Where did my psoriasis go?” A telling measure of how much this condition overtakes one’s mentality. Of coarse they didn’t have a clue why my skin cleared. My psoriasis started coming back from the moment I became conscious and has yet to leave.

My theory is that I was born on the wrong planet and that I am allergic to everything on this one. The reason that it is genetic is because my ancient family line started from aliens who had no idea that long-term exposure to the planet earth was going to cause large patches of itching, flaky red skin to form on the ones they left behind to integrate with humans. While my sarcastic theory may be far-fetched, it is no more ridiculous than filling my body with chemicals some researcher comes up with that will kill every other organ in my body, but will make me easier to look at. So I will be a spotted six foot tall woman the rest of my life with my liver, kidneys and other organs working correctly without interference from toxins prescribed by well-intentioned doctors.

You have a great website and I will continue to visit it occasionally when I am sitting around feeling sorry for myself, which happens when one has psoriasis. The rest of the days I will rely on the support I receive from a husband who never complains about having to dust the flakes off of his side of the bed before he goes to sleep at night, and a daughter who, after seeing her mother sob one day in the mirror said, “Don’t cry. You look pretty in pink.” -Kathy L.

*****

Ed’s Response:  Thanks so much for sending this, Kathy.  It’s made me smile a lot — and not because of the site praise (but thanks for that, too), but because of everything else in it.

One thing we don’t get a lot of here at FlakeHQ is correspondence from uninsured flakers who think they might be fortunate.  What you’ve done for me is open a new “section of the spectrum” of what it means to have P and live with it.  I think you represent a large contingent of people with P.  Perhaps larger than that contingent of people who have P and live with it, but live more with treatments and the pursuit thereof.  I know I’m tap dancing around my meaning here.  Let me try again.

For many people, P is far from debilitating, it’s simply annoying. So much for the “physical” aspects of having P.  Many people within this group also have sufficient self-esteem to be little bothered by stigma.  I don’t believe anyone who sports lesions in obvious places can go through life never feeling bad about the way others perceive them — but you’ve underscored this in your email.  Even you have sobbed in front of the mirror from time to time.  So, what we have here is a contingent of flakers — I’m guessing a rather large one — who are little hampered by the disease.  I think they (you) represent the flaking population’s version of a “silent majority.”  One of the things that characterize members of this contingent is relative passivity about treatments.  This could be considered an “acceptance” of one’s lesions and perhaps for some that is adequate.  But your email puts a different slant on your own “passivity” (and I know that’s not exactly the right word).  You know that all treatments today are palliative — meaning they do not cure the condition — and some of them are very expensive.  You have asked yourself the question, “What real quality of life improvements am I going to achieve by being aggressive in my search for effective treatment?” (Which would include spending a lot of money.)  And your answer is what you reflect in this email.  Though I’m obviously not a member of that contingent — being insured, I can and have pursued every compelling treatment I could find — I respect you and anyone who does belong to that contingent.  We now know, for example, that my parents and some of my grandparents had psoriasis.  Some of them were uninformed, but others knew what they had and accepted it more like you than like me.

Your one period of remission, when you were hospitalized and recovering from a serious automobile accident, isn’t unheard of.  Massive trauma (general or local) has been known to result in acquiescence of P (as opposed to minor trauma, which tends to aggravate it).  Does this have to do with T-cells being too busy everywhere else in the body to waste their time creating P lesions?  Does this have to do with mental state?  We don’t know.  It’s not something likely to be well-researched soon.  (And it's probably related to individuals' unique triggers.  I experienced major trauma after carrying around a burst appendix for eight days and during that surgery and long recuperation in the hospital my P was worse than ever.)

You didn’t say, but I bet if you were asked, “Was getting rid of your P worth going through the accident and all that followed?” ... I bet you’d say Not on your life.  Am I wrong?

You sent no picture, I’ve never met you, but I have absolutely no doubt whatsoever that you are, in fact, pretty in pink.  :)

Thanks again, Kathy, and please visit again soon.  -Ed

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