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Can People Read that will Make Them Understand?
My P started when I was 9 years old, with a small spot on my scalp.
With the passing years, hormones, and associated stress, it soon covered
the back of my scalp. I was never properly diagnosed.
At 27 I was
diagnosed Bipolar, Type 1 (manic-depression), and I went on lithium, which
helps me so much I don't want to go off it. Yes, I've tried most of what's
out there — I'm actually taking more than one mood stabilizer. The
bottom line is that I'd rather pick mental health over physical health if
given that harsh choice, not that P doesn't have its psychosocial
implications. But I digress.
my P did nothing short of bloom. It spread upwards and outwards across my
scalp, down the back of my neck, behind and on my ears, forward from my
ears onto my face on one side where a sideburn would be. I got lesions on
my forearms, my lower back, and my thighs, including one that looks like
it's making its way perilously close to my crotch (please, God, anything
but that!). A lesion on one
hip ... I'm sure I'm forgetting something, but, as you can see, I have a
bit of a problem.
I have no
insurance, so I can't do much else but the coal tar, salicylic acid,
Vaseline, baby oil shower cap routine, along with gentle bufpufing of some
of the more stubborn lesions.
OK, that was
all by way of introduction. My main problem, since I was 9, has been
people telling me not to scratch, with questions about me leaving behind
my "bad dandruff." I've
been leaving behind P scalp flakes since I was about 12 or 13.
Do you know of
any books, or pamphlets even, that would help non-P relatives understand
psoriasis, especially the fact that we can't control when, how much, and
where we will flake — and also the urge to scratch is essentially
impossible to ignore?
I'm writing not
about the parents of a child, but about the parents and other relatives of
an adult (me).
Perhaps I might
print out some of the letters on FlakeHQ to show them all the various ways
P can make life miserable.
If you have any
suggestions, any and all will be much appreciated.
Response: I’ve read and
re-read your email several times, Kathleen.
You’ve made me think. Think
hard. This is the
question I’ve been thinking about.
you know of any books, or pamphlets even, that would help non-P relatives
understand psoriasis, especially the fact that we can't control when, how
much, and where we will flake — and also the urge to scratch is
essentially impossible to ignore?
stuff that comes close. The
National Psoriasis Foundation’s brochure titled “A Guide to
Understanding Psoriasis” comes close.
But it isn’t the answer to your question.
(You can download this brochure as an Adobe Acrobat file from the NPF
web site, if you are a member.)
told by some folks who’ve read my little memoir, Flake:
Confessions of a Psoriatic that it helps explain P to non-flaker
friends in a non-clinical way. But,
though it’s short, it’s not short enough to be an answer to your
is available here.)
I think The Answer to your question doesn’t exist — yet.
What you need, what we all need at some time or another, is a short, brochure-length
statement that describes and explains what other people are looking at
when they look at a flaker. It
will describe the visual symptoms and
the non-visible symptoms. It
will address some of the more common flaker behaviors (like indefatigable
scratching). It will talk in general, non-clinical terms, about what
flakers do to treat their disease.
In other words,
The Answer will be something
written about us and to readers who are not us.
The only thing The Answer will assume is that the reader is interested to know why
we look the way we look and act the way we act.
I can help to
facilitate the creation of The
Answer, and edit it, but I can’t create it all by myself.
I think this is something we need to do together.
I mean, anybody who visits FlakeHQ and has an interest should be
able to put their two cents into this thing — The
we’ll go about it. I’ll
draft it. I’ll post the
draft here as a Microsoft Word file that people who use the Internet
Explorer browser can download automatically and import right into Word.
For people who don’t use IE, or Microsoft Word, I’ll make a
vanilla file version (.RTF) that you can get by emailing me.
These download and import versions are intended for people who want
to seriously contribute to the document by using their own word processors
and returning their changes to me. For
those who may be interested in simply reading the draft on-line and
emailing a thought or two, I’ll also post a version here as another web
page (.HTM). By the last
update of FlakeHQ this year (Nov-Dec), we’ll complete the document and
I’ll publish it “fancy” and make it available here as an Adobe
Acrobat file (.PDF).
We can come up
with The Answer, Kathleen.
In fact, nobody is better-equipped to do so than us.
P.S. — In the
meantime, Kathleen, if you want to print and share pages from FlakeHQ with
others, please feel free to do so. -Ed