|Mar-Apr '07 | briefing | mail | interviews | articles | psorchat | psorchat review | don't say this | flaker creativity | flakers' jargon | other places | archives | send mail | ed dewke | search | acknowledgments | legal stuff | ©2007 Ed Dewke|
Veterans Feel the Stigma
Dear Ed, First I want to say I just stumbled on your site yesterday and I need a little more time to go through it all, but it's wonderful! I've always tried to maintain a sense of humor with my family in having psoriasis. It recently began to flare up badly in the last year (a very stressful year by the way. I suppose that's a big factor.) I have terrible flaking on my scalp, the red/scaly/itchy patches on my legs, and sometimes back and trunk, but that's faded slightly since my teens.
In the last few years I've had it terribly in my ears, I call it a skin overgrowth, that hardens and sticks to my inner ears, it's terrible! Everyday I'm cleaning them out and it never stops. I have to get to the dermatologist again very soon. I just don't have the insurance at the moment. Anyway, it leads me to my comment for this page.
(With a female and 2 male friends) I just washed my face with Noxema and came out of the bathroom, my girlfriend says, what's that white stuff on your ear? (It was Noxema) and my male friend says to other, “There's always white stuff on her ears.” I wanted to die. He thought I didn't hear him, ‘cause I said, “What?” all innocently. I'll never forget it, but it was brushed off.
Psoriasis is so damaging mentally, I know I get very discouraged, my skin is gets completely dry, sometimes I want to scream when I'm in a cold dry room, it feels like my back and legs are cracking and on fire. I haven't worn shorts for 5 years, my legs are 10 times whiter than the rest of my olive toned skin. I'm sorry to dump my complaints on you. I really just wanted to give you the comment. My family helps me with my flaking scalp problem, we call them hills and say “There's a snowstorm in the Himalayas.” I know it can get very gross, but I'm trying to treat it and live with it.
Thanks for your time, -Ginger R.
Ed’s Response: Thanks for writing, Ginger. I’m glad you found us.
Achieving and maintaining a positive attitude when you are flaking is a challenge for all of us, and it’s that issue — more than anything else — that fuels FlakeHQ. When a portion of the world pooh-poohs our ailment as a “cosmetic condition,” another portion avoids us as though we were lepers, and even the health care community can, at times, seem indifferent or belittling about our complaints … it can be difficult to keep on smiling. Hopefully communities like ours are helpful.
I know I enjoy and gain tremendously from the mail that comes to FlakeHQ. My depression these days tends to be an extension of disappointment — usually disappointment when a med or regimen isn’t working as expected. I’ve gotten to the point with my topicals that I’ll apply them as a matter of hopeless due diligence, so I have an answer when a doctor asks, “What are you doing about these active lesions?” For the most part, all those topicals stopped working well for me years ago.
I’ve experienced complete remission from flaking enough times to know it’s possible. As I’ve written elsewhere in this site, that’s both a blessing and a curse. It makes the rebounds more painful.
Another source of depression for me is the fact that my most effective treatments also happen to be the most expensive — biologics. I’m lucky to have very good insurance with a more-than-reasonable monthly co-pay — but that’s tied to a job and these days jobs don’t feel all that secure anymore. There are no doubt thousands of us out there getting used to a flake-free — or nearly flake-free — lifestyle thanks to the biologic therapies and insurance to pay for them. What will life be like for us if, for whatever reason, we lose all that? Most of us, I suppose, will rebound, go through the depression, but recognize our circumstance from our own past experiences and eventually find some way to cope.
Obviously the best of all possible worlds would bring us a cure. Until that happens, I don’t believe in closing any doors. My monthly mail suggests there is a surge of interest in dietary approaches to treating P. Many people find relief along this route. For most of us, the dietary recommendations seem harsh and difficult — pills, goops and shots are easier to handle. Nevertheless, I take heart in all the success stories I read from people who have tried dietary approaches. I try to stay informed. (This month’s FlakeHQ Interview with Deirdre Earls is a case-in-point.)
I wish you the best, Ginger. Know you are not alone. And, if you haven’t already, look up “Scalp P” in the Archives — or search on it from the home page search function — to see what’s been said here, through the years, about dealing with P on our heads. -Ed