(February, 1999)

How Do I Stay Informed?
from Susan M.

Wow! Only today did it occur to me to get on the net and look up my wretched condition! I've had this psoriasis thing for EIGHT long years now and the only time it ever "hid" from anything was during my pregnancy. And even then, it reappeared immediately after my daughter was born.

I'm using Dovonex now mixed with Diprolene and Betamethazone (or however you spell these things) but I seem to become immune to things quickly. I smell like a re-paved street every day and more often than not, it's for nothing.

I've actually learned to enjoy peeling my skin. Shorts and short sleeves are out of my wardrobe completely and I promise, I'm too young for that. The nice thing is, I could have SWORN I was the only one going through this all this time.

Ultra violet light treatments are a joke. The tanning booth seems to help though. Oh, and why do people bother telling us to stop scratching? In eight years, my only revenge is TO scratch!

Help. Please send me any and all updates or tell me what I need to do to receive such things. Thanks. -Susan M.

*****

Ed's Response: Welcome aboard, Susan! We appreciate that sudden uplift upon learning you're not alone. But soon the euphoria will dwindle and cynicism creeps in. You'll ask yourself, "Jimminy! If there's so darned many of us, how come they haven't licked this thing yet?"

You asked why people bother to tell us to stop scratching? Well, there's the heartfelt reason: Scratching exacerbates the condition. This is true but conditional. We itch because our skin isn't responding normally to its environment—and by "environment" I mean the air around us, the clothes we wear, the sheets we curl up between, the water we sprinkle ourselves with, etc. The thick lesions and rough coat of scales makes our skin interaction with the environment abnormal. Before we had docs and such, itching saved our butts. Those wee critters who could get "under our skin" but were too slight to feel had to make us itch before we knew to get rid of them—i.e., scratch them off. Without the itching, we'd be infested and eventually turn into bug chow. But it's the nature of this beasty called P that itching usually makes it worse. How lucky can we get? But when I said the advice was conditional, I was pointing to this condition: If we don't do SOMETHING to get rid of the flakes, our topical medications don't work too good. We all know the easiest way to get rid of the flakes is scratch them off. If we let them pile up—walked through life on tippy-toes and relentlessly protected our lesions of becoming deflaked—the goop would never get through the crust to the live stuff underneath. So, when I come up with a gentle way to scratch away the lesions I'll let you know—as soon as I've patented it.

But there's another not-so-heartfelt reason why people tell us not to itch: We leave flakes everywhere! What a mess! That should be easy enough to figure....

Staying informed about our P has never been easier. Join the National Psoriasis Foundation first (I like to think of my membership as my "license to flake"). Then stay on top of the sundry web sites out there. All in all, this one (FLAKE HQ) is probably the least authoritarian. We visit here not so much to stay on top of things, but to lighten up. Hell, what would you be doing with your time if you weren't here? Probably watching Clinton's Senate trial and scratching flakes all over your living room. Right? So, stay in touch! No one can become upset about the pile of flakes you leave around your chair while you are reading letters from fellow Flakers at FLAKE HQ! (Hell, I've been told even some NON-flakers get itchy just by browsing here!) -Ed

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