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Flaked for 34 Years and Still Counting — Derm-free For Awhile
from JPH

Hello Ed: I just discovered your site and read a few of the letters you posted. I feel, probably for the first time in unremembered years, a very small sense of hope.

Though it goes without saying, I say, nonetheless, that I too suffer from Psoriasis. I was diagnosed at 8 years old, and I've had the goddamned disease now for over 30 years. Until I read some of the mail at your site, I never knew that additional health problems were commonly experienced by other P sufferers. This was very comforting to learn as I've been fighting the appellation of hypochondriac most of my life, and have, in some of my lower moments, questioned whether I did in fact deserve it.

From time to time, I've passed through other P sites, personal and professional, and found most of them dreadfully discouraging and depressing, filled as they were with stories of failure and hopelessness. Frankly, I experience enough despair over my own Psoriasis privately that I can find no comfort in a public forum that is openly awash in it.

Why am I writing to you? I write to you because your site doesn't serve up doses of dismay, it offers normalcy and humor, and I, quite frankly, am in desperate need of both just now.

I am sometimes (and particularly so lately) wracked with so much self pity that it collects in my chest like black lung and smothers me. I need a reminder now and again that there is still also joy in the world because I become so caught up in my own pain that I forget that there are reasons for laughter and that being alive is good thing.

What's my Psoriasis history?

I have Psoriasis over my entire body: head, face, neck, trunk, arms, hands, legs, and feet (I have arthritis as well). In the last couple months, walking has become very painful because of the psoriasis on my feet.

In 34 years, I feel like I've used everything. From cortisone and vitamin-based topical applications (triamcinalone, Temovate, Kenalog, Dovonex, Tazorac, Psorcon, etc.) to anthralin, to various coal tars (RX and OTC), oral vitamin therapy (rosehips, vitamin A & vitamin D), psoralens and PUVA, UVB, methotrexate, ad nauseum, and none have worked for very long. As a child, I had P only on my scalp, but it quickly and steadily worsened over the years (my P has been "classed" as severe most of my life), and about 2 or 3 years ago it changed suddenly from severe Plaque to a combination of Plaque, Pustular, and Guttate after I briefly used Tazorac.

I stopped seeing dermatologists on a regular basis some years ago, and then after the Tazorac fiasco, I stopped visiting dermatologists altogether (my GP prescribes the meds I tell her I need). Last week, however, I asked my GP for a dermatological referral because I can no longer battle this monster alone.

Cynic and skeptic though I be about the medical profession as a whole (and dermatologists in particular), I need some surcease from this unwinnable war.

In all these years, I have only ever briefly met one other person with Psoriasis (about 17 years ago). In all these years, I have only ever spoken about Psoriasis with dermatologists. In all these years, though I've had the love and support of my spouse, I have never spoken with anyone who truly "understood."

Forgive that I have rambled on so at such extraordinary length. In spite of, or even perhaps because of the anonymity in sharing this with strangers who nevertheless understand, I am, if only momentarily, eased. Thank you. -JPH

*****

Ed’s Response: No rambling in your email, JP. Rather, an eloquent summary of a P-life — from childhood through adult — that illuminates (hence enriches) our own experiences. I thank you for sharing it with us.

Of the many points worth re-reading in your email, these two I want to address for a moment: the first about other health problems experienced by flakers (your second paragraph), and the second, your disenchantment and prolonged abandonment of dermatologists (your fourth paragraph from the end).

Your comment about flakers having other health problems really made me sit back and think (and also browse a bit in the archives here). As immersed as I am in the day-to-day communications here at FlakeHQ, it had not occurred to me that our many exchanges on other health issues aren’t all that common. I thought about why.

I think your point about being thought a hypochondriac must be a factor. When I was diagnosed a type-1 diabetic in ’97 I weighed 140 pounds (for the previous 30 years my weight had normally been between 190 and 215). I’d shed 50+ pounds in a matter of months and, because I wasn’t feeling all that bad, and because I was enjoying being skinny (though now people tell me I looked cadaverous), I was disinclined to consider something might be seriously wrong. Then I learned suddenly — shockingly — that something was seriously wrong and my life was in jeopardy and steps had to be taken. It just so happens that in those first few weeks of discovery my P was flaming. (I may have been skinny, but I was still disinclined to show off much of my skin). My P was obvious, my D was not. To talk about my D when all people saw was my P made me uncomfortable. I know I look like hell, but actually, what you’re seeing is the least of my problems at the moment. Can you believe that? Let me tell you what else is wrong with me.... Fact is, I was not used to having a health problem that was not obvious.

At FlakeHQ, flaking is a common denominator. We are also sharing an environment in which our knowledge of each other is not based on sight. Because you are a flaker, as I am, I do not regard your P a discriminating aspect of your personality. It does not set you apart, here. Other things distinguish you.

When we are not pre-occupied by the obvious, the potential relatedness of other health problems becomes a natural and fascinating issue. For example, overuse of steroids is considered a known trigger of diabetes (see Diabetes as Psoriasis Treatment Fall-Out).

Also, the whole idea that P is an immune-system-related disorder suggests countless relationships (some of which are accepted as genuine — e.g., the correspondence about ulcerative colitis in the Archives — others only suspected, a few clinically discredited).

In a sense I suppose we are typecast. We have this visible affliction and when a non-flaker thinks of our health this business with our skin is the first and foremost (if not only) consideration. We may be disinclined to suggest our thyroid is acting up when we suspect the well-meaning inquirer will think, Good Heavens, this poor soul is preoccupied with his thyroid when it’s perfectly obvious he’s falling apart from the outside in.

Most regular visitors here will read your email, JP, and see you have tried just about every traditional therapy for treating P and probably a host of less traditional therapies as well. You have tried the safe regimens (vitamins, etc.) and one of the least-safe (methotrexate). It is, therefore, most fascinating — albeit understandable — that you gave up on dermatologists. For many of us, you are like a fellow who climbed Everest. An authority whose actions are noteworthy. How many times have I asked myself, why do I need a dermatologist? Why can’t my GP prescribe this stuff?

(Bear in mind, we are precipitously close to blasphemy, here.)

This is not a rhetorical question: If a flaker were to stay on top of the state of the art in P treatments and research, via devoted attention to the National Psoriasis Foundation (publications and web site), are they likely to be less informed about their condition than a dermatologist? (The Archives here are peppered with reports from people with reason to believe they are better informed than the doctors with whom they consult.) If a General Practitioner believed the flaking patient stayed so informed, and through earnest communication with the patient negotiated what both believed to be good therapy options, would the General Practitioner provide less appropriate "care" than a dermatologist?

This is an important question to consider because it has an equally consequential flip side. How many of us have seen a dermatologist within the last twelve months but not seen a GP for over a year? Before I was diagnosed diabetic I made no attempt at regular preventative visits with a GP. I went to the doctor when I was sick and, either because of or in spite of the fact that for years I belonged to an HMO, ironically I was only treated for my complaint. That meant that, essentially, my derm was my primary care physician by virtue of being the only doctor who saw me regularly. Now consider this: My diabetes was initially detected by a home care nurse attending my mother-in-law. She agreed, on a lark, to test my blood sugar after just having checked my mother-in-law’s. My blood sugar level was over twice normal. Her eyes widened and she suggested, with forced serenity, that I see a doctor about this right away. Regular visits to my dermatologist had not and probably would not have yielded this indication because, at the time, I was on no regimen that required testing my blood.

This is a dark side of medical specialization. While I’m not privy to the debates, I know the issue is recognized. Either through ignorance or uninformed affinity, or through pressures of limited financial resources, patients will, given the opportunity, attach themselves to doctors who are specialists and not positioned to be primary care givers. Of course, the so-called managed care in vogue in the U.S. at this time is supposed to mitigate this danger because the patient under managed care is served by a "team" of care givers — all who communicate with each other. This is an evolving concept that is neither perfect nor universal — and for some it is contentious (see Tiffany's HMO Restricted Referrals = Bad P Treatment in this month's mail).

I have received many emails from flakers who for reasons like your own have given up (permanently or "for the time being") on dermatologists. When and if they resume visits, I rarely hear how things go from resumption on. Though you weren’t specific about when you stopped going to a derm, you did say "after the Tazorac fiasco" and I know Tazorac hasn’t been around that long (my experiences with Tazorac were equally disastrous, as noted in my August ’98 Briefing). I would be very interested to hear from you again, after you resume care under a dermatologist. Is he (or she) recommending anything new to you? And, of course, what results are you obtaining from whatever regimen is prescribed.

In the meantime, while the jury may be out, we aren’t. So, do stay in touch no matter what. Thanks again, JP. -ED

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