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Long Sleeves In Spite of the Heat
from Lois B.

I just want to say I’m trying to tell myself what you quote is so true — Why stay so stressed over something we cannot cure?

It’s been so terribly hot and humid in NY and not being able to wear the clothes I want is very depressing.  I’m always wearing sleeves.  The other day I finally decided to wear a tank shirt and two men commented on my skin condition.  Now I’m back to sleeves, regardless of the heat. 

I’m unable to attend the conference [National Psoriasis Foundation® 2002 National Conference, August 9-11 in Orlando] — do you ever appear anywhere else? –Lois B.


Ed’s Response:  Well, Lois, you won’t get any “thicken-your-skin” lecture from me.  For half of the year I was on cyclosporine I was entirely flake-free.  I mean, no lesions anywhere, and family hounded me through the summer to try something a little more seasonal — like short sleeves at least.  That summer I used as my excuse that I didn’t own any short sleeve shirts (which was true), but then had to quell others’ intentions of buying me some.  Why? I ask myself in retrospect. 

I wonder if I wasn’t protecting the status quo inside my own mind.  I had no misconceptions about the temporary-ness of my remission.  I knew that cyclo was a 12-month reprieve and there was little hope of staying clear once I stopped using it.  Would it have been torture for me to feel life in short sleeves again?  (Something I’d not felt for nearly a decade at that time.)  Worse yet, would it have been too bitterly depressing to have to stop wearing those short sleeve shirts down the road a few months?  No, it was easier for me to keep wearing what I had become accustomed to wearing.

At the moment it has, for several days straight now, hovered right at 100-degrees around my home.  Men have been here working on the house — putting up new siding.  Yesterday, in fact, during one of my few and brief appearances outside among them, one of them commented:  “You can tell who’s working in the air conditioning!” I was wearing black sweatpants and a dark long-sleeve knit shirt.  Spending five minutes out doors [100 degrees by the thermometer on the porch] was misery.  “Why don’t you put on something fittin’ and give us a hand?” 

I heard myself respond, “No.  I don’t wear things fittin’ for this weather.  And you would be glad I don’t.”  I left them to ponder what that meant.

So, no Lois, no lectures from me suggesting you toughen up and wear what feels good despite the comments.  The sun and summer isn’t my cup of tea.  You will find me in the air conditioning, dressed as though I’m waiting for something, which I am.  –Ed

P.S. — The NPF Conference this weekend is my first speaking engagement in the psoriasis community.  I attribute that to the great courage, compassion and gambling esprit de corps of the Foundation.

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