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On Crys B.’s Lonely 20 Year Vigil
from Mike B.

Hi Ed.  I'm currently working through your Jan-Feb pro-tem postings with delight, as always (I take it Nov-Dec never did materialize?), and as usual I've got two cents to throw in. (And since I'm on fixed income, I'll happily accept any change back ;) )

A few words for newcomer Crys B. [Alone With This for 20 Years] — as Ed says, a great deal of the comfort/discomfort battle with P depends on your acceptance that it's your own problem, not anyone else's, and YOU have to decide how you feel about it.

Obviously my own case is unique, as are those of all of us, and may not relate in any way to yours.  But with the rare exceptions of bad erythrodermic flare-ups, which in the past have been maybe 10 or 12 years apart, generally I don't bother with medical care and have gotten into a routine of Vaseline or whatever to help get some scaling off coupled with occasional topical cortisone to relieve discomfort if itching becomes severe.

I do see a derm out of town, but just once a year to stay on his current-patients roster because he has admitting privileges at the local hospital (which has some excellent P people on its staff).  And while he's said to me that I make him feel useless if I won't undergo ongoing outpatient treatment, he can accept being just my emergency backup resource when and if needed.

Basically, I take the attitude that in my own case, 99% of the time P is far worse to look at than to have — and I'll cheerfully tell "outsiders" that.

Best, -Mike B.

*****

Ed’s Response:  Thanks for this, Mike.  I hope Crys is reading. 

And this is a good opportunity to plug another one of your regular haunts, Mike ... PsorChat (http://groups.yahoo.com/group/PsorChat).  This is a Yahoo! forum established about a year and a half ago by Rob T., also a FlakeHQ correspondent and recent continental wanderer of the William Least Heat-Moon (Blue Highways) and John Steinbeck (Travels with Charlie) variety.  Mike and Rob are only two of the nice people who hang out there....

I would imagine there is a huge subset of flakers whose physical discomfort because of their P isn’t too traumatic, flakers who can and do function normally and are able to tolerate their condition with little focus on treatment.  For these the stigma, which Crys is finding overwhelming, is the true hurt caused by the disease.

Manifesting the symptoms and then learning what the condition was angered me initially and then, as the lesions spread, the stigma, for me, was nearly life-changing (in many respects I guess it was life changing).  But it wasn’t until the onset of psoriatic arthritis (PA) that I realized I could be debilitated by the disease.

Like so many FlakeHQ correspondents, I learned about the more effective treatments and their terrible potential side effects and — until the PA came — it was not difficult me to say “no, I won’t go that far.  It’s not that bad.”  And I went about fighting my stigma any way I could (this web site has been, by far, my most effective antidote to stigma).

The PA scared me bad.  It didn’t take too long for me to change my mind about those hardcore drugs with all the potential nasty side effects.  The drugs accomplished what I hoped they would.  I haven’t been UNable to drive (my most frightening indicator of awful things to come) since I was on my first round of methotrexate in 1999.  Now I’m taking Enbrel — one of the new biologic drugs — in hopes of continuing good fortune with considerably less risk.  (As of February, 2003, and two months of Enbrel, my PA remains at bay while my plaque psoriasis is returning.  But there are extenuating circumstances that, I think, make any judgment of Enbrel still premature in my case.)

When I read this email from you, Mike, I paused to ask myself, “What would I be doing for my P right now, treatment-wise, had I NOT developed psoriatic arthritis?”  Would I, like you, have established a level of tolerance that minimized my focus on treatments?  To me, that’s like asking, Would I have come to terms with my stigma and learned to live with it?  I considered what has happened to me, health-wise, outside psoriasis during those intervening years and concluded something would have changed.  Too many major additional health issues have come up — ones that ARE worse to have than to look at.  I think I probably would have come to terms with my plaque P.  Perhaps not to the extent you have — I’d still see a derm every 6 months or so to ensure the steady availability of prescription topicals — but unless there had been a gross increase in skin area effected, I’m pretty sure I would have stayed away from the hardcore systemic drugs (methotrexate and cyclosporine).  A part of me says, “That’s too bad.  Now you know those drugs haven’t hurt you and for many months you enjoyed lesion-free skin.” 

What does all this prove?  Nothing, really, save we are all different in what we need.  Perhaps it proves that, contrary to popular opinion, 20/20 hindsight isn’t all that clear. 

Thanks for giving me a reason to reflect, Mike.  -Ed

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