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Flaking Nana Finds New Strength
from Patty O.

Dear Ed:  I have been devouring your site for over a year now and feel that it's finally time to pipe up and say thank you — among other things. I have had psoriasis since a teen and now, on the cusp of middle age (should I live to be a hundred and ten), I find myself thankful for this curse. 

To elaborate: I developed psoriatic arthritis circa 1982 and it escalated over the next eight years.  My skin was never horrid.  I had the “please don't think this is dandruff”  syndrome.  I wore long sleeves in the hottest possible conditions.  I adored the life of an ex-pat in England but upon returning to the states in 1990 found myself nearly paralyzed and in pain from waking to sleeping and often in between. I went on a regimen of Methotrexate and topicals.  I lifted my first grandbaby in my teeth and crooked arms.  I slept on my hands to keep them still because if I moved them the pain was excruciating.  There was no way I could get down on my knees or even out of a chair gracefully. Down the line, liver biopsies were threatened.  I declined. 

Lo and behold.  The new millennium — eight grandchildren later.  My skin is totally revolting.  What started as small flaky patches has grown to encompass most of my body (which co-incidentally has grown into the billowy, soft proportion that befits a 'nana'). Even my face is affected, and my hands (always loved them — no liver spots, just blisters and scars now).  I itch.  I feel like a leper sometimes.  My grandbabies want to bring me Band-Aids for my owies.  I will not be 'doing' the bathing suit thing this year (but did I ever?)

But, I walk two and a half miles a day. I can haul around a 30 pound grandchild and even crawl on the floor with the new ones.  I prepare meals for our ever-burgeoning family and still want to dance with 'papa' when they load up the vans and leave for the day.

I don't know why I have this nasty skin thing.  In the night I search for the soft skin that my husband used to love.  My back has become a map in relief: mountains, craters, and every now and then a smooth little river of skin. It is a good memory.

I take one naproxin tab a day.  If I think of it, I use one or the other topical steroids or an over the counter tar coal med for my obvious flaking.  And in the morning I wake up, not to excruciating pain as I did for so many years, but to a dear old lady, the one who wears turtle necks, long sleeves and long pants — even when the sun is shining.  The one who waits to hoist a baby up high on her hips; the one who organizes a day at the beach.  The lady who doesn't remember when the pain stopped in her arms and legs.  The one who just feels so blessed to be here.

Don't get me wrong.  This total skin degradation is not so nice.  I read everything I can and my friends are all too willing to share the latest 'cure' — diet, pill, meditation, etc.  Frankly, I am a hussy to this disease.  I would quite willingly try most anything.  But I don't want to mess with this new found strength.  Maybe it's a trade-off? 

I have no idea why I am feeling so strong and fit these days.  I harbor this great fantasy that I will somehow make my skin respond in kind to my will.  So far it's not working — but, hey — anything is possible.

Sorry for going on so long here.  I have found such strength and humor in this site. I truly felt as if I was alone with this quirky, horrid, antisocial disease.  It's been wonderful knowing that I'm not.

If anyone else has this correlation with psoriasis/arthritis...I would love to hear.  Thanks Ed,  for your great site and your compassion and your beacon! -Patty O.

*****

Ed’s Response:  Thanks for sharing your story Patty.  You’re a beacon yourself.  Your email came at a propitious moment in my own “career” with P.  I’m undergoing a transition from cyclosporine back to methotrexate and the psoriatic arthritis, which has been mostly a memory for the past two years, is back to become reacquainted.

And what was the first thing I thought about?  How I could not toss around the grandchildren, bounce them on my knees with such alacrity, carry them for acres on my back and shoulders. What’s hurting most?  The sore, swollen joints, or the loss of those opportunities? 

Elsewhere I recounted how one of my granddaughters, four years ago when she was three, quite accidentally caught papa undressed and surveyed the full extent of his P.  Later, attempting I suppose to make me feel better, she said, “Papa, when I grow up I’m going to have spots just like you.”  For two of the past four years this grandchild, and all the rest, have forgotten about Papa’s spots.  A few days ago, that same granddaughter got a close-up glimpse my hands, which look awful again, and she recoiled while hissing, “Ohhhh.  Psoriasis!” as though it were a bug we thought we’d gotten rid of. I think she’s outgrown her desire to emulate me.

I’m not sure, Nana, what the source of your new-found strength is, but the fact that you found it gives me hope.  I’m looking for my own cache now.  Stay in touch, Patty.  -Ed

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