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Chapter Five
Body Parts

Ears

I didn't know I had psoriasis in my ears until one derm discovered it. “Oh boy, you got it here, too.” That meant yet another prescription — a liquid steroid solution — and the need to start ensuring a supply of Q‑tips™. 

For many months thereafter the ear psoriasis remained deep in my ear canals and I had to leave my solution and Q‑tips™ in sight or I'd forget the twice daily applications. But eventually this manifestation decided to grow, too. It crept slowly out of my ear canals and spread over the folds of my outer ear. Then it became more symptomatic of the psoriasis I knew and hated; i.e., itching, flaking visibly, a more or less constant irritant.

I do what I can to keep my outer ears flake free, but I believe what I'm told: remove flakes by picking at them when the lesions are dry and you're more than likely to compound the problem as well as bleed. So, I've tried to avoid getting into the habit of picking at my ears, especially in public, and to mask the psoriasis I've let my hair grow longer.

The ear psoriasis has come in handy. My second wife used to chastise me for “not listening to her” when she was trying to irritate me.

“You don't hear a word I say.”

“Well, honey, it must be the psoriasis, see?” Then I'd show her and for a few days she'd leave me alone.

Hands

My hands erupted on an extended business trip to Washington, DC and several points in Ohio, in mid 1995. I have plaque psoriasis on the backs of my hands and pustular psoriasis on the palms of my hands. The only effective therapy has been high potency steroid cream and wearing so called “food handlers' gloves” overnight. I ran out of high potency steroid cream on this business trip, and had no food handlers' gloves with me. My hands had been quiet for weeks before this trip, so I stupidly wasn't worried. About ten days into the trip I looked like a leper.

For me, hand psoriasis is the worst. You can't hide it (short of wearing gloves, which is equally conspicuous), it's tremendously uncomfortable (itching, cracking and sore­ness), and it can be debilitating to someone whose work involves a lot of typing.

My trip to Ohio was a corporate television field production expedition. The producer/videographer and I (her assistant) visited a factory in Cincinnati to shoot two days of video “on location.” En route from DC to Cincinnati, we stopped over night at the producer's parents' home in a small Ohio hamlet north of Columbus. My hands looked like they'd been dipped in acid or held over an open flame. I felt like Freddy Kruger. As is usually the case, people couldn't help but notice then felt embarrassed about staring and unwilling to ask probing questions. But, also as usual, innocence overcame inhibition and a four-year-old finally broke the ice.

We were sitting on the patio on a humid afternoon. I was doing my best to conceal my condition by hiding my hands between my crossed legs, but I'd been served a beer and this meant I had to occasionally grasp the can. Little Jacob saw my hand while I took a sip, charged up to me and said, loud enough for all to hear, “Ouch?”

What could I do? I let little Jacob peruse my hand and said, “Yes, ouch.” This caused a momentary embarrassing pause in the adults' conversation, but they recovered quickly. At least I was less timid as I finished my beer.

Two days after the little-Jacob episode, I was with my producer on location in Cincinnati. She was picking and setting up shots. I was dragging equipment around and, supposedly, getting people ready to be interviewed. This meant attaching their lavaliere microphones to their clothes and getting them comfortably seated for the interview. Only none of them were too comfortable having someone whose hands looked leprous run microphone cable under their jackets and apply powder to their foreheads. The women interviewees seemed especially fearful.

When you're on a field shoot in someone else's back yard, you don't like to make waves, so I cast desperate glances to the producer/videographer. Eventually she relented, did her own miking and powder jobs. Nobody after that had to be exposed to my “disease.” I carried cables and equipment around twice as hard, logged shots (i.e., wrote down where she pointed her camera), and just tried to be relevant and necessary.

Fingernails

I'd read about nail psoriasis long before I ever manifested it, so when it finally happened at least I knew what was going on. The gross deformation of the nails caused by psoriasis can be socially paralyzing — you just can't hide the tips of your fingers all the time!

I'm told some people have their psoriatic nails removed and replaced with artificial nails but, when the psoriasis manifests under the nail bed, won't such a procedure be a short fix at best? I don't know; that level of vanity is not my problem.

In fact, when I was a boy a manicurist told me my nails were “hopeless,” and that was years before psoriasis and I made our tryst. The manicurist worked at the barbershop where I shined shoes. The proprietor of the shop was particular about his bootblacking. “You put the wax on your bare hands and you rub it into the shoe with your skin — your leather to the shoe's leather.”

The manicurist, a pudgy middle aged woman with no disposition whatsoever, thought this was an assault on personal hygiene. Often, when the shop was empty, she'd call me over to her station and labor to get the shoe wax out from under my nails. It was during one such session that she said my nails were “hopeless.”

She based that prognosis on the ragged evidence that I was an accomplished nail biter. I'd be the first to admit: psoriasis or no, you'd not want my hands to appear in close-up on your TV commercial.

Nonetheless, watching the nail psoriasis hit both my thumbs at the same time was a real horror show. In many respects nail psoriasis can be the most insidious variety because it manifests slowly and acquiesces even slower. In my case, the psoriasis in the thumbnails first appeared as a yellowing of the “moons” just beyond the cuticle. Then the “yellow” part of the emerging nail pushed up so the nail had a distinctive ridge. Over the next weeks and months the nail grew like an ugly yellow wave, up and down. Eventually, the nail was totally corrupt, from cuticle to the end I chewed off.  I really did look like something a horror movie special effects supervisor would love to replicate.

No derm has been able to offer an effective topical remedy for my psoriatic nails. One fellow talked me into something called “Russian Formula.” This was an unguent comprised of beeswax and something really nasty. It was applied liberally to my right thumb nail. Then they covered it with plastic (occlusion) and then standard medical gauze and tape. My instruction was to keep all this dry and in place for ten days. What happens after ten days? I asked. I was told my nail would peel off allowing a new nail, hopefully a healthy nail, to grow back in time. Meanwhile I would just walk around without a thumbnail.

Sounds a little radical to me now, as I write this, but I do recollect how grotesque the psoriatic nail looked, and how anything, even having no nail whatsoever, sounded better at the time.

Well, trying to keep your thumb dry for ten days is easier said than done. I showered with a latex glove on that hand; tried unsuccessfully to keep the dressing clean.

The night before I was scheduled to have the dressing — and nail — removed, Lexington got hit with one of its worst snow storms in years. I made it to the dermatology clinic but the good doctor who'd administered the “Russian Formula” did not. But it was okay; another derm was there and volunteered to fill in.

Off came the dressing — what a relief! There was the nail, psoriatic, ugly and a bit rubbery. It wouldn't come off. The stand-in derm even went at it with a scalpel and managed to cut my nail bed severely.

As it ended, I drove home over icy streets with a new dressing on my thumb, this one to prevent infection. The nail had survived, was still there. As I was checking out of the doctor’s office, I said to the cashier, “Next time I'm going to try Scandinavian Formula.” She smiled and nodded and hadn't the foggiest idea what I was talking about.

When nail psoriasis spread beyond my thumbnails to, eventually, affect every nail on both hands, I got desperate. At the time I was developing some computer software applications for a client of mine and I was expected to demonstrate the software for the office staff. That meant sitting at a keyboard, office workers hovering around me, while I typed and described the elegance of my handiwork.

The inelegance of my hands themselves made me extremely self conscious.

The night before the grand demo I went at my deformed nails with an emery board and much to my surprise (or maybe I was fooling myself) I seemed to achieve some improvement in their appearance. I managed to level out some of the ridges, straighten up some of the rough edges. Yeah, anybody who took a look would know something was grossly wrong here, but the nails weren't as bad as they had been prior to the emery board treatment.

Later, I got real creative. I rigged a way to attach sandpaper to an electric screwdriver. Talk about your high tech manicure! My fingertips were literally smoking.

Because I'm nuts or something, that year I concluded the family holiday video to my parents with a macro‑close-up of my nail psoriasis and a narrative description of the way I was “sanding off the rough spots.” My dad took this to heart and bought me a high speed handheld router for Christmas, complete with a set of sanding tips.

I've since cooled to this method of cosmetic dermatology for nail psoriasis — especially after the pinky finger on my left hand caught fire.

Feet 

I remember saying to myself, when my hand and nail psoriasis was first getting bad, “Why couldn't it be my feet?” The psoriasis gremlin eventually answered: “Why not your hands and your feet?”

I'm fortunate in that I can stay more or less gainfully employed and not spend a lot of time on my feet, because when the plaque psoriasis rages on your feet, walking can be painful. 

My office is in my home. Yes, I'm one of those lucky stiffs who can leave their ties in the closet on most days and spend weeks in those old, stretched out, comfortable loafers or athletic shoes. But I own a few pairs of nice dress shoes just like I own a few suits — for funerals, weddings and equally morbid business appointments.

There are a few cities in which I really love to have overnight business, because such trips give me an opportunity to enjoy these cities. New York is one of these. When I'm in Manhattan I walk. Doesn't everybody? I walk to lunch, dinner, shows; I walk along the waterfront.

One of my favorite Manhattan walks is from Times Square down to South Ferry. I love to arrive at South Ferry just after nightfall, then take a round-trip on the Staten Island Ferry to enjoy that illuminated New York skyline as we chug past Liberty Island.

On one such trip to Manhattan in the spring of 1994, I decided to take my late afternoon midtown‑to‑downtown walk and did so, because I had no alternative, in my business attire. This included a crisp pair of tight Oxfords which, though several years old, hadn't seen but a few blocks of wear.  They still weren't really “broken in.”

My feet were “beginning to holler” by the time I got to South Ferry, but I blamed this on the shoes. I'm sure it had a lot to do with the shoes. 

I remember sitting in my hotel room later that night, watching TV and quite casually rubbing my “sore” feet. That night I didn't pay much attention to what else might be wrong with them. 

I had another business appointment the next day and noticed before my shoes had been on for an hour that my feet were really hurting. “I just over did it with my walk yesterday,” I said to myself, and tried to make it through the meeting, then lunch, then the next meeting without limping visibly.

After my last meeting of the day, I relented and took a cab back to the hotel.

That evening I noticed the big red splotches running down the sides of my feet, and the scattering of nickel sized lesions on the instep. “Welts,” I thought. Those shoes were just too damned tight to walk in.

I didn't really suspect psoriasis until I was back home, back in my comfortable athletic shoes, but still limping around. When I took my next close look the real culprit became clear. Those red “welts” were flaking. It was most prominent after I spent several hours barefoot. I rather imagine that's because my feet had an opportunity to dry out, hence the extra thick layers of psoriatic dermis at the surface turned white and scaly, just like on every other plaque lesion.

I've learned the foot lesions aren't particularly difficult to treat — especially those on the insteps — if you wear loose shoes. I've been more or less successful with high potency steroid ointments. Thick lesions on the soles of the feet are more problematic; for one, like corns, walking on them can put pressure on the nerves beneath — hence the pain. Also, I think the very act of standing and walking on these lesions has much the same effect scratching other lesions has: it irritates them, magnifying the condition.

The next time I was on a business trip in one of my “walking towns” and didn't have comfortable shoes to change into, I smartened up. The first thing I did was walk to a department store to buy some comfortable shoes.

The lesions on my feet are ever present; they wax and wane like all the others. I've read or been told that occlusion therapy can work on feet just like it works on hands; however, I've not heard of “food handler's slippers” that work like “food handler's gloves.” I've thought about going to bed with large size freezer bags over my feet and taped to my ankles, but gosh, what if my house caught fire and I had to run outside and be seen by my neighbors?  What would they think of me in my shower cap, wearing a pair of food handler's gloves on my hands, and sporting two freezer bags on my feet?

Privates

If you just sat there and got psoriasis, and didn't move, and didn't aggravate the lesions, you would probably live until you starved. Skin growing fourteen times faster than normal is not typically fatal (for humans). Ironically, derms seem more concerned about the consequences of treating psoriasis than they do about the disease itself (as well they should given the nasty side effects of some of the treatment regimens). The exception to this is any and all psoriasis activity that “breaks” the skin. When you bend skin that is overly thick (or overly thin) and overly dry it will tend to crack; and when this happens it's just like having a cut or a scratch — infection can set it. Infection is a threat when the skin breaks or cracks, but usually before infection becomes a problem there's the pain with which to contend. When psoriasis hurts — I mean, really hurts — it's often because the affected skin has cracked.

At one time or another, I have had this happen to most of my lesions. That's because I, like every other psoriatic, am not at leisure to just sit there and manifest the disease. I, like every other psoriatic, have to get up and move around — get on with life. Here is something I learned the hard way: The skin over your joints isn't necessarily that which has to be most “flexible.” There are a couple of other areas where skin elasticity is very important — your anus and your genitals.

All right, now you know what I'm about to get into is unpleasant. I'll definitely understand if you want to skip this part.

In the Fall of 1993 I was working on an extended assignment in Washington, DC, when I learned I was needed for one day in Philadelphia. Normally, you'd hop a train to commute from DC to Philly and back, but I decided to rent a car and drive back through Lancaster County, Pennsylvania — a part of the country I really love and hadn't visited for nearly a decade. On the outbound part of that drive my anus began to burn. It literally felt like someone was holding a lit match under my seat. I'd never felt pain quite like this before.

As I cruised along sweating profusely, I tried to determine what the matter was. Because I had no history of such a sensation, all that I could conjure was images of my father, thirty years earlier, when he was suffering from hemorrhoids. The pain used to make him sweat, too.

I managed to get through my appointment in Philadelphia and start the motor trip back, but I couldn't make it all the way; it was just too damned painful to sit and drive. At least I had the tenacity to make it to Lancaster County, where I found a motel and looked forward to a good soak in the tub. While the tub was filling I used the commode...

...and thought that I would not live to see another Sunday!

I look back on the experience now and call it “The Agony of Evacuation.” I don't want to go into further detail; just remembering it still makes me sweat.

I just knew it was hemorrhoids and made an appointment with my GP long‑distance to ensure he could see me the minute I got back home to Lexington, Kentucky.

“Who is your dermatologist?” my GP asked while he was conducting his “behind‑my‑back” examination.

I told him.

“Has he examined this?”

“Examined what? My butt?”

It wasn't hemorrhoids, it was a psoriatic lesion “involving” the anus, and it had cracked (no pun intended).

My GP and my derm put their heads together and came up with yet another expensive topical unguent — a moderately potent steroid cream combined with an antibiotic. Thank God, it worked 

Now, flip me over. Psoriasis on the genitals. That's another story.

I can only address my own experience with psoriasis on the penis. I've no personal, anecdotal or clinical experience with psoriasis on the vulva (but my heart bleeds for those who do).

“Damn! It hurts,” I said and reluctantly rolled away. The room was dark.

“Is it me?” she asked, tenderly.

Snap. A lamp went on. I was blinking while my eyes adjusted to the light. “Oh Lord!” she exclaimed, “You're bleeding!” Sure enough, I was.

Forget my pain. How do you suppose that made her feel?

Upon examination the problem was obvious. A quarter sized lesion on the inner side of the penis, encompassing the foreskin, had stretched beyond the limit of its psoriatic durability and cracked during intercourse. Until that moment I hadn't known I had this lesion. (Rather wish I still didn't know, to be honest with you.)

Here again derms go gentle with the steroid creams. I was prescribed one of the mildest on the market; but I didn't let my derm off the hook so easy.

“So,” I said, “Maybe this stuff will quiet it down, maybe it won't ... but if it's like every other lesion on my skin, we know it won't go away forever. Is it not safe to have sex if this lesion is flaming?”

“Use a lubricant,” he said. “And be gentle.”

I'm just glad the solution wasn't occlusion therapy.

●●●●●

Ed’s Postscript (2/20/2008):  My ears have continued to flake, on and off, even after I started systemic therapies. Flaking ears plagued my father his entire life, but it wasn’t diagnosed as psoriasis until he was in his late sixties or seventies. As far as I know, the ears were the only place he ever did flake. Eventually my derm and I discovered Fluocinonide solution was best at subduing psoriasis activity both outside and inside my ears.  As with most topical corticosteroids in my experience, the Fluocinonide solution works best if it is used sparingly and infrequently.

Occlusion continued to be the only answer for my hand psoriasis until I started taking systemic meds. And occlusion was only reliable with potent corticosteroid ointments like clobetasol or betamethasone. But occlusion never did much for my nail psoriasis. The first treatment I had that eradicated nail psoriasis long enough for healthy nails to replace the corrupt ones was cyclosporine, an oral systemic used primarily to dampen tissue rejection in transplanted organ recipients.  Flakers take much smaller quantities than transplant patients, so we can usually remain on the medicine for longer. High blood pressure, fluid retention leading to edema (swelling) and kidney dysfunction are the side effects that usually signaled me to stop my course of cyclosporine — and that usually had to happen after 10 months on the drug. I was also lucky about my cyclosporine rebounds (return of psoriasis when the drug is stopped). Skin lesions would return relatively quickly with the exceptions of hands, feet and nails.  All of these parts stayed clear longer than the rest of me.

The fact that cyclo helped my nails while occlusion did not may have something to do with where it started. For nail psoriasis, lesion activity can be in the nail matrix, where the cellular activity that generates new nail material occurs. This is beneath and further down the digit from the cuticle and “moon” of the nail. If the psoriasis dysfunction is causing tissue growth in the nail matrix to occur too fast, the ridges and thickened nails will happen. But lesion-like activity can also happen directly beneath the nail, in the nail bed. In this case, scale similar to what we experience on other skin lesions builds up beneath the nail, lifting it and, sometimes, causing it to separate completely from the finger. When my nail psoriasis was at its worst, the skin on top of my cuticle was always inflamed. To me this suggested the underlying nail matrix was the culprit.

It’s been true for me that once I’ve had a significant lesion, that place on me doesn’t forget and future lesions are likely to occur right there, too. My anus has been no exception. Fortunately, now I know when it’s starting to happen. Fast use of the corticosteroid/antibiotic cream thwarts the problem before it gets to the awful stage I reached on my painful journey to Philadelphia all those years ago.

Genital psoriasis is among my most recalcitrant types. I get inverse psoriasis, which is a type characterized as inflamed but without flakes and thickening. At times it virtually engulfs my scrotum, parts of my penis, and the folds of skin that attach all of this to my groin. In 2003 I had an orchiectomy (removal of a cancerous testicle). My genital P was active at the time and I anticipated a Koebner Phenomenon response to the surgery that would make it even worse. Well, it didn’t get worse, but since that time it has been ever-present. When my genital inverse psoriasis is flaring it itches terribly, but giving it a good scratch (when occasion permits) is an awful idea. It seems to take a lot of scratching to make the itch subside and then, over the next quarter of an hour or so, what you scratched catches fire. Literally. Like somebody is holding a lit match to your balls (or, in my case, “ball”). So, it should come as no surprise that, in the Dewke household, anti-itch cream is ALWAYS at hand.

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