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Crys B.’s Lonely 20 Year Vigil
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.
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.
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"
Best, -Mike B.
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 ...
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.
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