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Taken Time to Learn to Live With P
just want to say thank you for your web site. I have had P since I was 8
and I am now 40, so I have lived almost all my life with it, tried almost
everything. The only time that I have been completely free was when I was
pregnant, but I think that staying pregnant is a bit extreme not to say
I have gotten older I no longer care what people think.
If I want to wear something that shows off my skin, I do.
Other people may have a problem [with that] — not me.
But it has taken me many years to feel this way. When I was younger
I had very few playmates.
Many parents thought their children would catch “my disease” if
they played with me.
husband developed P when he was 34 and his mother asked if he had caught
it from me. He found it very difficult to cope as he could not understand
how he got it.
husband died last November and I have a new partner who calls me Madam
Mim (the witch from the Sword in the Stone) as I have got P all
would just like to say thanks again. -Jacqueline
This was refreshing to read, Jacqueline.
Your words humble me in that I haven’t quite obtained your level
of self-esteem and assertiveness.
My wife and children have not missed an opportunity to point out
that, while I’ve been mostly clear on the systemic regimens —
alternately MTX and cyclosporine — I still haven’t changed my manner
of dressing, which keeps me covered from ankles to wrists, and I haven’t
shaved the beard that I can no longer justify as a cover for the lesions
on my cheeks and chin.
My one concession has been hair cut shorter than I ever let it be
when the scalp P was raging.
wife, Clara, was diagnosed with P for the first time in 2000.
We were both startled, as she has had no sign of P in 48 years,
although she does have some history of it in her family.
She was obtaining only modest clearing of her half-dozen or so
lesions using topical corticosteroids when, last May, in a household
accident, she broke her collar bone, fractured her wrist and probably some
of the bones in her face.
Within weeks of this trauma her lesions were clear — and to date
they have not returned.
(Probably this should be cause for celebration, but it’s hard to
celebrate a P remedy that involves multiple bone fractures and much lost
glad your husband has attached an endearing name to you which
embraces — rather than ignores — the flaking part of who you are.
I am always warmed to hear stories — and there are no end of
these stories — about people who find love despite their own belief that
it would be impossible because of their flaking.
You know — we know — that this simply isn’t the case.
True love is, at best, momentarily entertained by what we are on
It is not deterred or derailed by P.
I look forward to hearing from you again, Jacqueline. -Ed