May-June '08 | briefing | mail | interviews | articlespsorchat | psorchat review | don't say this | flaker creativity | flakers' jargon | other places | archives | send mail | ed dewkesearch | acknowledgments | flake: confessions...  | legal stuff | ©2008 Ed Dewke

Chapter Nine
The Flaking Way of Life

“Manic Itching a.k.a. Pruritus”

In August of 1993 I was flaring mightily. Of seventy some lesions I could count on my body, all but a handful were raging (my forehead and nose were, thankfully, more or less under control). I left trails of flakes everywhere I went.

Unfortunately, that same month, I and a colleague of mine had to make a joint presentation at an industry trade show in Washington, DC. “That's all right,” I thought to myself. “Wear the shower cap for a week before the show; apply the unguents two times a day; you'll be wearing a suit — only the hands pose a problem.”

My colleague flew to my home in Kentucky about four days ahead of the trade show. We prepared our presentation there and planned to drive to DC. My colleague, whose career is largely based on standing up in front of groups, suggested that we “perfect” our dog and pony show by videotaping it a few times then analyzing the videotapes. So I set up the camera on a tripod, flipped it into record, and we went through the motions, which had him working at an easel on stage right, me moving around or standing behind a podium at stage left.

When we reviewed the tape for the first time, I was pretty pleased. No major screw up in delivery; overheads were legible and seemed paced appropriately; my colleague's performance at the easel was as smooth as I expected it to be; my smiles and one liners seemed well timed. We sat in silence, watching the video and taking it all in.

“What did you think of my performance?” my ever-≠diplomatic colleague asked when the video concluded.

I wracked my brain to think of something to criticize (that was, after all, the purpose of this exercise). Finally, I said, “Your hands look fat on the big screen when you place the overheads on the projector.”

He didn't miss a beat. “I'll try to keep them out of the picture next time. Did you notice anything about your ges≠tures?”

“My what?”

“Your gestures.”

I thought fast again. What was I doing? Using my bird finger to point? Grabbing my crotch like Michael Jackson? He answered for me.

“You're scratching yourself constantly.”

I had been totally unaware of it. I rewound the video so I could see this myself. And yes, there I was, scratching my scalp, my arms, my chest, my back, and my thighs. All it seems I didn't do is raise my knee, or bend over, so I could scratch my calves. I even saw myself scratching my buttocks. I looked like some gorillas and baboons I've observed doing the same thing at the zoo.

An occasional scratch, especially of one's forehead or cheek, is considered a contemplative behavior. Psoriasis can, on the other hand, bring on what might best be described as “manic scratching.” This is considered eccentric ... no ... repulsive behavior — even more so when the consequence is a circle of flakes on the floor surrounding you.

It's been written that some psoriatics don't have a problem with itching. All I can say is the only lesions on my body that have never itched are in my inner ears (even the ones in my outer ears have itched from time to time).

The most helpful advice I've ever received from a derm about controlling the itch was simply “Don't scratch the lesions; it will only make them worse.” The prognosis seems to be correct in my case, but the preventative is nearly impossible. I scratch in my sleep and when awake. Nothing I've tried prevents this behavior entirely; however, I have made a few small discoveries.

My cat suffered from “manic scratching” for awhile. It was so bad she was losing whole clumps of hair and then scratching until her skin bled. (We're quite close. Do you think this could have been ‘sympathy scratching’?) The vet identified the root of the problem and prescribed some concoction to take care of that, but in the meantime, to control the cat's itch, he prescribed an over the counter (human) antihistamine. We allergy sufferers know all about histamines and antihistamines. Histamines are something your body generates that, when in excess, make you itch. I suppose back when we were filthy furry creatures this was a natural safety measure: Itching aggravated the fleas and other multi-legged pestilences that bear diseases and make us irritable. Even though we eventually lost the fur (or most of it) we kept the histamines. Histamines need something to do, too, and have found that raging against environmental things like pollen, dust, smoke, mold spoor, etc., can keep them occupied. So, when we people who are allergic to such things can't avoid them, the histamines come out in force. Antihistamines are just that: chemical agents that counteract the histamines.

I tried the antihistamine treatment myself the next time I found psoriasis related itching to be a problem and, sure enough, obtained some relief.

As I've said, I know of no sure-fire way to get around the itching. Antihistamines help some, but at a cost — most of those that abate itching effectively also induce drowsiness, so they're not always a desirable course of action. The best long-term regimen to fight scratching appears to be keeping your skin moist. Not just the lesions, all of your skin. This means frequent application of a good lotion and use of a moisturizing soap, or a soap-like cleanser that does not have any real soap. I had a cardiologist once — yeah, a heart doctor — offer this bit of unsolicited advice: “You have no business using soap at all.” He told me to use Dove bar soap, which for nearly a decade I did. Now I'm trying Dove Body Wash and it seems to work even better than the Dove bar soap.

Oh yes, our presentation at the trade show in DC went well and I never scratched. To not scratch was foremost in my mind during the presentation, so it's a good thing I had my lines down pat. And my buddy kept his fat hands mostly out of the overhead projector.

But I must confess, after our presentation I returned to my room, stripped, and scratched until, in places, I bled. A good thing to do? Of course not. But I would rather have done that than had sex at that moment.

 

“I am food for dust mites...”

For awhile I was dating a woman who lived in another State. Our encounters were brief and always precipitated by circumstances beyond our lust. In other words, we were lucky enough to find occasions to get together, usually paid for by someone else.

I was so excited by this one opportunity I splurged and reserved a suite at a prestigious hotel in downtown San Diego. Hardwood paneling, thick pile, dark ruby carpets... Great! Just the place for a flaming psoriatic!

Scheduling complications precluded her from joining me my first night there, so I used room service for my dinner and spent the evening lounging in bed while watching in‑room movies and, of course, scratching. The next morning I was horrified. Parts of me were everywhere. That ruby red carpet showed every flake as though it were a diamond on black felt. Thank God the bed sheets were white; but suspecting the worst, I wiped them off and watched a shower of flakes deepen on the carpet surrounding the bed.

She would be joining me that afternoon. This was unacceptable. I had to be as flake free as possible. Instead of my usual morning shower, I opted to soak in the bathtub, let those flakes get soft and lethargic, and then eradicate them with a powerful terry cloth scrubbing. I went at it with a vengeance.

When I uncorked the tub, stood up and dried myself off, I was more ruby red than the carpet in my suite, but if there were loose flakes on my body, I couldn't see them. All right. I felt good. I was confident the maids would come before my afternoon tÍte-ŗ-tÍte, and I appeared flake free for the time being.

The only thing I was right about was the maids. They did come and clean the flakes out of my room before my lover joined me there that evening. But my rough “bathtub treatment” backfired mightily.

My current derm calls such treatments “atomic bombs.” Psoriatic lesions are areas of the skin your body suspects need reinforcing (i.e., these areas are under attack, but it's not true) so your body expands the blood flow into these areas and supercharges the skin's growth rate.

My derm says, “We try to figure out why the body can be fooled into thinking there's a problem when there isn't one, but treatment isn't helped when you make a problem where there wasn't one.” Interpreted, that means my rough removal of flakes in the bathtub that morning — working over my lesions with the washcloth until they almost bled — simply reinforced my body's assumption that something was wrong. So, for the next eight hours, it stepped into high gear to replace all those scales I'd scraped away.

Lord knows, I knew it was happening, all day long as I sat through my business meetings. I could feel my skin grow like Kansas farmers can hear the corn grow.

By the time I got back to the hotel, she was already there. Flowers, champagne, room service already ordered. I stayed in my suit, tried not to itch, for as long as I could. But this was, after all, a romantic liaison. Finally I had to say, “My Sweet, my psoriasis is raging. Let me go see how bad the situation is.”

As I rose to go to the dressing room, I saw the dusting of flakes on my black Oxford shoes.

Minutes later, she knocked on the door to the dressing room. I was standing before the mirror, naked, totally appalled — every lesion had rebuilt every flake I had taken away that morning, plus some!

“Yes?” I called back to her knock, trying to sound calm.

“If you're going to bathe,” she said, seductively, “let me join you.”

She was an extraordinarily sympathetic lover.

The next morning we laughed together and I said, “Look what I have to put up with!” then swept flakes out of the bed onto the ruby red carpet.
 

“You should always live in hotels, then,” she said, pulling the sheet around her. “So you'll have maid service daily.”

“But it's disgusting!” I whined.

“It's job security,” she said.

“What? What do you mean?”

“You are a perpetual harvest of food for dust mites,” she said, “And God loves dust mites, too.”

 

“The clothes make the man — feel better”

Before my psoriasis I had a very casual attitude about clothes. I hated long sleeve shirts, liked Bermuda shorts, loathed spending lots of money on “business attire.”

When I was transferred to Washington, DC, I was given an office next to an older woman who was appalled by my lack of taste in clothes.

One day, after we'd been together for several months, Nancy couldn't stand me any longer. She stopped me in the hall: “Ed, why don't you take the afternoon off and go buy a new suit?”

“Nancy,” I said. “I'd love to take the afternoon off, but I don't have eighty dollars to spend on a suit right now.”

This was 1980. Nancy was floored. “Eighty dollars? Ed, you can't buy a suit for eighty dollars!”

Now I was insulted. “Nancy, I've never spent over eighty dollars for a suit in my life. Why should a suit cost more than eighty dollars?”

Nancy evidently sensed a window of opportunity. There, in the hall, she launched her lecture on quality clothing. She explained how suits are fabricated, cut, stitched together.... About the seasonality of different fabrics, the importance of linings.... This went on for several moments, until my eyes glazed over and it became apparent to her that most of what she was saying was sailing right over my head. Chagrined, she stopped her lecture and said, “Well, Ed, how do you judge a suit's quality?”

I looked at her completely deadpan and said, “Nancy, it's easy. I tug at the seams to see if they'll hold up in the wash.”

A year later, Nancy's and my paths separated. Since then, every few years we run into each other at a trade show. The last time this happened I saw Nancy before Nancy saw me. I crept up behind her in the conference exhibit hall and tapped her on the shoulder. “Look Nancy,” I said when she turned, “Not a man‑made fiber on my body!” She grinned broadly and hugged me.

“Took you long enough to catch on, Ed.”

What drove me, eventually, to quality clothing was no epiphany of style. It was the psoriasis that did it for me.

My second wife bore the burden of years when my psoriasis was budding. I did not associate clothes with discomfort — itching, scratching, bleeding and flaking — but she did. She bought my first silk shirt. What a difference that made! The silk floated on my skin, felt almost as though I were wearing nothing at all. It should surprise no one to learn that if the clothes they wear irritate their skin, their “skin problems” are going to be exacerbated.

Furthermore, I learned that most of the time garments that feel good look good, too. Until I was forty, I don't think anyone ever said to me, “Gosh, Ed, that's a good looking shirt.”

One of the joys of working at home is what I call the “Hefner Effect.” Hugh Hefner, founder of the Playboy™ empire, use to be well known for living in pajamas and bathrobes.

When you “telecommute,” as I do, you can work all day in your robe if you want to. Now, I don't do that normally, but there are many days when I'll get up before sunrise and put in an hour or two at the computer before getting dressed for the day. When I do this it is always my worst “flake time.”

When I converted my garage into my office I made a dumb choice in carpeting: It's blue and shows every flake. On some of my “bathrobed” mornings I used to leave a veritable doughnut of flakes around the chair at my workstation. This resulted from my “manic itching.” I sat there, staring at the computer screen, deeply engrossed, and when my fingers weren't on the keyboard they were scratching somewhere.

This went on for a few years. It would still be going on, but I finally wised up. It wasn't just the psoriatic lesions begging to be scratched, it was the combination of psoriatic lesions and my terry cloth bathrobe. Terry cloth, especially as it gets older, tends to be very abrasive.

The day I switched to a silk robe the pre‑dawn doughnut of flakes quit being a problem. Thanks to my silk robe, my vacuum cleaner can anticipate a longer life.

●●●●●

Ed’s Postscript (5/22/2008-5/27/2008): I don’t think it would be an overstatement to say that if you can’t control your scratching, you will never be lesion free.  I think my manic scratching had a lot to do with the fast spread of my psoriasis in the early and mid 1990s. I may be mistaken. I did grow some lesions that never itched and others that may have but couldn’t be reached to scratch (e.g., middle of my back). But interestingly, these lesions usually weren’t medicated, yet they healed as well as others that got gooped all the time. The lesions that I scratched the most hardly ever improved, no matter how much goop I drowned them under.

My scalp is a good indicator of my scratch-and-flame theory. All my scalp lesions itch horribly. I have this one chance to improve my scalp with prescription topicals, which is to catch the lesion growth on my scalp early while I still have the will power not to scratch, then apply the topicals and leave them alone. Nine times out of ten the scalp psoriasis subsides, or at least doesn’t get worse.  HOWEVER, if I falter and begin to scratch, a full scalp flame time is inevitably ignited. No amount of topical goop will overcome the damage done by scratching. This is why for years I’d have flaming scalp psoriasis while lesions elsewhere on my body would come and go, improve or fail to improve under the effects of assorted topicals.

Scratching a psoriasis lesion is like tilling the soil of your garden. It just makes it easier for your psoriasis to grow.

A typical plaque psoriasis lesion releases flakes of silverish or whitish scale. Each scale is a cluster of dead skin cells from the top layer of your skin. When they are alive, these cells are translucent and supple and live for up to 30 days before they are displaced by new cells pushing their way to the surface.  These newer cells enjoy the life support provided by lower levels of skin (blood flow containing oxygen and nutrients) effectively “killing off” the older, outer cells.  In psoriatic skin, the normal replacement of old cells by new cells happens in more like 4 days instead of the normal 20-30. The old cells can’t be shed in a leisurely fashion; instead, they clump together as scales and tend to hang on until environmental factors — clothes rubbing, being bumped, abraded or scratched — detaches the scales.

But what’s “typical” about psoriasis scale does have some interesting variety associated with different parts of the body.  The scalp is one of these exceptional scale-generating places.  The scale doesn’t form that much differently than it does in other places, but the density of hair up there makes the result different.

I wager there’s not one among us that hasn’t experienced the exercise of wrestling a “chunk” of psoriasis off a strand of hair.  For one, the natural oils exuded from hair follicles mixes with the dead skin tissue to form a thicker, more snot-like substance. This “new” substance tends to bunch around hairs, building up like mulch mixed with glue.  You can break these away from the scalp by scratching, combing or brushing, but then they become loose rings of psoriasis snot floating on hairs like shish-kabob pieces on a barbeque skewer.  For straight-haired flakers these pieces slide off easily, but curly or kinky-haired flakers have a tougher time with final removal. The way I’ve expressed it here is misleadingly unpleasant. I can spend hours meditatively deflaking my scalp. All I need is healthy fingernails. I’ve heard from many other flakers who say the same thing. It may be a long-forgotten animal trait that had soothing or social value. I’ve read that chimpanzees spend hours picking bugs out of each other’s fur. Scalp deflaking might feel like that (stress reduction?). I’ve never tried deflaking another flaker’s scalp, or having another flaker deflake my scalp. But that’s not to say I won’t have the opportunity to try it in the future.

Places on the body that tend to stay moist — armpits, groin, skin “folds” — are less likely to form the dry scale associated with plaque psoriasis.  In fact, they have another name for the type of psoriasis that manifests in these areas: inverse. I’ve also heard it referred to as “flexural” psoriasis. When inverse lesions itch, WATCH OUT. Scratching these lesions can result in burn-like pain that isn’t immediate. This is particularly insidious because you scratch and the kind of pain that actually “feels good” and abates itching occurs for a time, so you tend to keep scratching. Then, some minutes later, the burning starts. The longer you scratched, the worse it is.

My worst inverse P is on my scrotum and around my scrotum in the groin area. I’ve learned the hard way about the post-scratching agony. These days, when I happen to catch one of those old Michael Jackson music videos with his trademark crotch-grabbing gesture, I don’t grin or giggle, I wince and writhe.

Another unique psoriasis scaling experience is reserved for people who have “inny” type navels (bellybuttons).  Two pictures of flakes in the navel are contained at ShockingPsoriasis.com and a glimpse of these may help you understand what I’m about to say.  If the navel is deep, as mine is, and flakes are actually generated inside the aperture, as mine are, the most unique thing happens at the very bottom of the navel: the flakes ball up and become compacted and attached to the healthy skin.  This psoriasis ball must be pried loose (I use medical forceps). I call what I pull out of my navel this way a “kernel,” because it reminds me of an unpopped popcorn kernel. Recognizing that one has a P-kernel deep in one’s navel, then going through the procedure of removing it, is without a doubt for me one of the most rewarding activities provided by this obnoxious disease. I have no idea why this is so. Is it a perversion? If so, judge me not until you have pried your own kernel from your navel and understand the satisfaction....

But by far the most startling story about “manic” removal of flakes (now that we’ve moved on from simple scratching) had to come from Mike B., whom I interviewed in July, 2007.  I quote....

I'd always assumed that the buildup under my heels, and to a lesser extent the rest of my feet, was simply years of accumulated callus, since I've always preferred to go around barefoot at home.  During my hospitalizations for erythrodermic psoriasis, years of psoriasis build-up on the bottoms of my feet cracked.  I'm not sure if the cracks were caused by the erythro flares, or the treatment, or both or neither.  Anyway, those large cracks opened almost the entire length of my feet, from the back of the heel to just behind the toes.

I conned my wife into helping me enlarge this crack with a pair of thin barber-style scissors, and at that point we were able to peel the whole thing off in almost one piece, like some kind of monstrous sock.  Getting it over the toes was very uncomfortable, borderline-painful, but the results were amazing.  It was many weeks before I got even a hint of fresh scaling there. 

But the usual foot treatment involves working on the thickest chunks with the serrated knife.  What the heck, while I get uneven chunks off, it does (for a while) encourage new semi-loose edges that I can play with. –Mike B., FlakeHQ Interview

My feet have been just about as bad as Mike B.’s depiction.  Here’s a photograph of the sole of one of my feet when it was very bad.  I’ve saturated some of the colors to add contrast for easier viewing.  The “yellow” is psoriatic skin — the type Mike peeled off like some “monstrous sock.”

The tendency to want to peel one’s psoriatic feet (and “peeling” is, truly the right word to describe the process) is, in my opinion, related to scratching. In my case, it was the distinctive kind of itch generated by foot lesions that lead me to discover they CAN be peeled. Once I made that discovery, I was hooked as long as there were lesions active on my feet. I have one “piece” of psoriasis from my foot in a desk drawer.  I shaped it to make a mandolin pick and put it there to “age” thinking it would get tougher but retain some flexibility. I looked forward to eventually using it as a mandolin pick. Years have gone by and I haven’t used the “flake pick” to play mandolin. I fear it has become too rigid. It will either break if I try to strum with it, or it will play but not “sound right.” I’ve decided, though, not to throw it away. It isn’t bothering anything in my desk drawer. I take it out sometimes and remember how long it’s been since my feet had such atrocious lesions on them. That is a good thing to be reminded of.

A couple of additional things to read about “itching”...

●●●

It’s been a long time, now, since I’ve left piles of flakes everywhere I go. I must make myself stop and remember how awful that used to be. The experience recounted here — a romantic tēte-‚-tēte — pains me to recollect and makes me completely sympathetic to the intimacy anxieties suffered by any flaker. Having said that, I’ve received tons of email from people recounting how understanding their lovers have been. I would say this email outweighs its opposite 10 to 1. There are, however, disparities between female and male experiences.

Most of the email I’ve received on the subject from male flakers has reported understanding partners. Most of the email from female flakers has also reported positive experiences, but the anxieties leading up to those positive experiences have been longer and harder.

My favorite recent story is from M.G.  It started in early 2006 and ran through the fall of 2007. In this order, M.G.’s story is a terrific and inspiring read:

Another story came from Gene R. as a response to M.G.’s first chapter (Can’t Let a Boyfriend Get Close). It’s a male point of view with an interesting twist:

●●●

That clothes can aggravate or mitigate one’s experience of living with psoriasis is a fact as far as I’m concerned. Since I wrote the final section of this original chapter in the early 1990s, I’ve learned that even the detergent I use to wash my clothes and the softening “sheets” I use in my dryer can make a difference. (For me, all these products need to be allergen-free.)

Another side of the “dressing for psoriasis” experience is fashion and style. How many emails have I received over the past dozen years from upset folks who couldn’t wear what they wanted to wear?

For the psoriatic, the style and color of clothing is often determined — at least in part — by how many lesions can be covered, and how flakes can be made inconspicuous.

For women this often means slacks and pastel colored long-sleeve blouses, sweaters and jackets. Men have less difficulty “dressing for psoriasis” because styles in business and formal attire usually “cover up” most of their skin. Both sexes have trouble with leisure and “activity” styles. And, when psoriasis lands on the hands, face and scalp, dressing to conceal is hopeless.

I’ve heard from a number of flakers who staunchly advocate doing nothing to conceal one’s psoriasis. Dress as you would like, they say, and if people have problems with what they see let them look away.

Sometimes I experience this attitude as courageous resolve. None of us “are” what our skin might suggest we are (monstrous ... diseased ... grotesque....), so to be exposed and disprove that we are these awful things is a good, admirable act. But I have occasionally witnessed it being not so admirable. I’ve seen mean people with bad tempers flaunt their psoriasis in ways intended to be off-putting. It is as if they are saying, Back off, people, I AM an ogre, as you can see. On those rare occasions when I run across this type of flaker, it makes me recoil and want all the more to hide my lesions from society.

Last year (2007), Mike Paranzino, founder and publisher of Psoriasis Cure Now!, organized national “Short Sleeve Day” (September 15, 2007). This year it is “Short Sleeve Days” (plural, September 12-14, 2008). Mike is skillfully playing off the passion we all have to be treated as “normal,” to be able to “dress like the rest” without inhibition or qualm.

Over the years there have been a number of similar attempts to “free us” from our dressing constraints by grouping us together. Cruises for flakers have been recommended. Later this year (2008), at the National Psoriasis Foundation annual meeting in Orlando, a “pool party” is being arranged. All of these opportunities underscore our natural desire to have skin we can expose with impunity.

The flipside of our compunction is to cover up with style. A telling example is the recent reception given to Viri Elena at PsorChat when she suggested she and some friends are considering starting a line of clothing for flakers. If you could equate enthusiastic replies on a message board as “applause,” you’d have to conclude Viri Elena’s idea drew a standing ovation. (To review the correspondence, search on Viri Elena at PsorChat.)

Appearances, and our subservience to them, are hardwired into us. We can overcome this social programming if we really want to, but we do not want to. Rather than lose or cover up our psoriasis lesions, is there anyone who would rather lesions come "into style?” I didn’t think so.

Contents of Flake: Confessions...

www.flakehq.com
©2008 Ed Dewke