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Docs Didn’t Tell Her Everything
from Sherr’ee C.

Hello Ed. I had the pleasure of reading your book [Flake: Confessions of a Psoriatic] during a brief hospital stay. I ended up getting strep for a second time, suffering from dehydration and a mild kidney infection.

My hats off to you Ed — it is a great book ... but I find it difficult to believe you had retreated from the world.

I’ve had my first experience with the painful P: hurting just from touching lesions or moving my skin. And bleeding, which I’m sure I caused from scratching in my sleep.

One derm told me that there was no guarantee my P will go away soon. Another derm said that I will most likely deal with P the rest of my life. They are basing these pleasant prognoses on the fact that with my second strep infection I’ve also had another flare. But this time it is different ... larger spots.

Maybe I should start a clothing line for P sufferers! Men and women. I wish I could design something to stop the flakes from finding their way to the outside of the clothes. I cannot tell you how relieved I was to learn that I was not the only one to find my DNA being left absolutely everywhere I have been. I guess I never really thought I was, but no one ever really said it and the Docs don't exactly tell you everything. For example, they never said it might show up on my genitals.

I would actually like to find a derm that has P. I think that we would all get a little more sympathy towards treatments and life. Well I have a lot of work to catch up on. Talk to you soon. -Sherr’ee C.

*****

Ed’s Response: There are derms that have P. One derm-member of the National Psoriasis Foundation is on video saying his P motivated him to go to medical school and become a derm. I don’t know if NPF annotates their referral list with derms who are also flakers, but you might think about zapping them an email with a request for referrals in your area.

The full gamut of what P can be like is so vast I really can’t fault derms for being somewhat tight-lipped. There’s a one-liner in the Don’t Say This list here about a derm who showed a new flaker a photo of a person with erythrodermic P (most if not all skin affected) and, even though this patient had a few modest lesions, the derm said, "That’s what you have." Imagine how that person felt! Fact of the matter is, no derm can look at any case of P and predict with any certainty what it’s going to look like in the future. Predictions can become slightly more reliable as the doctor’s knowledge of a patient’s history grows, but completely accurate prognoses are a pipe dream. Who knows? You may find that a change in climate clears you ... or that starting to eat something, or ceasing to eat something clears you. You may find a prescribed regimen that "freezes" your P at an acceptable level of involvement.

So, on the chance that stress is a trigger for a patient, why stress a flaker-newby with grim possibilities? I think this is the logic many derms exercise when they "fail" to tell us things we end up learning elsewhere.

I remember my first visit to my current derm. I came to him after a succession of unsatisfactory appointments with another derm and my face was a mess. Nose, forehead, eyelids, ears, chin — lesions everywhere. (You read about this in Flake: Confessions...) During that first visit my new derm was very optimistic. After I related to him all the things the earlier derm had tried, he said, "Well, she’s pretty much tried all the low-power remedies." (Note the professional ethics at work there.) Then he proceeded to prescribe what he was certain would have my face clear in a week or two. In retrospect, I don’t know why he was so certain, because knowing what I know now it’s blatantly obvious that he had no business being certain, but I’m glad he was. I was relieved when I left that first appointment and diligently applied my new batch of topicals. About 10 days later my face was clear. Now, you tell me, which medicine was most important to me at that moment? The topicals, or the uplifting of my spirits and self-confidence this derm inspired?

At that time my derm elected not to suggest my facial P would probably return, and I might develop more lesions on other body parts, and a whole succession of therapies over the next decade would prove to be temporary fixes at best. He elected not to show me any pictures of what, in fact, I did end up looking like years later. But he couldn’t have known where my P was going, so I’m glad that he didn’t scare me with where it might go.

That your recent hospital stay was brief suggests to me that they’ve gotten rid of the strep and kidney infections and re-hydrated you. I hope you’re doing well. I’m glad you enjoyed Flake: Confessions... and look forward to hearing from you often. -Ed

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