Special Camp Counseling Made Me Feel Lucky
Hi Ed! I've spent the last few evenings reading over the information (including your archived letters) from your web page. I'm 36 years old and I've had P for the last 19 years. I live just north of Pittsburgh, Pennsylvania. I had a very mild case of P from high school until the birth of my daughter in 1986, then I steadily got worse. Now I'm considered severe.
I have erythradermic psoriasis which my husband says looks like someone threw hot oil on me and burnt me from head to toe (except thankfully, my face has been spared). It does not become thick and scaly, but stays constantly peely and itchy.
I also have thick P covering my entire scalp and ears and also P under my fingernails and toenails. I got one of those "Don't say this" comments yesterday... I was told that I had something in my hair that looked like oatmeal. The woman proceeded to try and remove the "oatmeal" until I told her it was a P flake. With a disgusted look on her face, she exited the room very quickly.
I am currently taking Methotrexate (2nd attempt at this drug) and have had some relief, although with this drug, alcohol is forbidden (which I enjoyed socially before the drug), so I don't know if I'm getting relief from the absence of alcohol, tanning (natural or artificial) or the drug.
In the past, I have tried Tegison (which is used in cancer patients) I found this a horrible drug with many side effects that are not worth the benefit of my skin clearing. I've also tried Accutane, many creams and ointments, and PUVA as well as UVB. I have been involved in drug studies and done 3-week P daycare (all-day/hospital in-patient treatment with tars and lights). I also use approximately 200 grams of Dovonex every 10 days or so (occlusive), which require periodic calcium level blood testing.
So far, although not a cure, Dovonex has given me more relief that any other ointment or cream. They also make Dovonex liquid for the scalp, although I personally do not like it. For my scalp, I use Derma Smoothe FS. I wet my hair, massage the solution on my scalp and sleep with a shower cap on. The next morning, I lay in a tub full of water and gently scrape the scales off with my stubby fingernails or a comb. Because it's a pain in the @**, I only do this about once every two weeks, but could definitely use it more often. Usually, two shampoos take out the oil very nicely. I also use a compound of 10% Urea in Diprolene lotion for the flaky scalp days.
The many years of PUVA have caused extensive freckling all over my body, which is as ugly as the P, but then freckles don't hurt! I have a very supportive family and friends. I try to enjoy life as much as possible, but no longer wear bathing suits, or t-shirts or shorts. I am not comfortable with the stares and whispers. I try to educate as many people as I can that come in contact with me, but some people are just plain ignorant and still stare and/or back-off. Those people do not become my friends. Their loss.
My daughter has developed a little P on her elbows, but luckily at this point, a mild steroid has cleared this up. Unfortunately, I get P from both sides of the family. My father has it and also my maternal grandfather had it. My brother was also mildly affected, but one of the lucky ones who cleared up with a steroid cream.
I have many P pen pals through The P Contact Page which is maintained by Dave Keats (the address of the Contact Page is: http://www.richmond.edu/%7Edkeats/psor/contact.htm. It's great to correspond with others who are going through similar experiences. Last summer I was a camp counselor at Camp Horizon (run by Dr. Howard Pride), which is a camp for kids ages 6 through 15 who have chronic skin diseases. WOW, those kids were the bravest, most special kids I've ever met. It actually made me feel lucky that I developed this disease as an adult. It was a very rewarding experience.
I wanted to thank you for making me smile! My email address is: [email protected] if you would like to email me. If you get the chance to post my email, you may post my email address also. I would like to hear from others. -Sincerely, Michelle :o)
Ed's Response: I'm adding Dave's P Contact Page to OTHER PLACES, here. Thanks for reminding me about it! ... I have heard from very few other women whose P was triggered by pregnancy; many others who have reported their P acquiesced during pregnancy. Sorry you had to be on the wrong side of that sort, Michelle.
... Your attitude about Tegison reflects my own, but I was glad to hear you have experienced good results with Dovonex (unlike me). I haven't yet tried the in-patient treatments, but if next year is any worse than this year, that might be in store for me, too.
... I, like you, have forgone the "revealing" clothing for good. I no longer even possess a short-sleeved shirt, nor a pair of shorts or cut-offs. I think I would be quite comfortable settling in some arctic climate.
... At least you tolerated the PUVA & UVB long enough to freckle. I just went from my typical albino-like coloration to painful crab-red inside three minutes of exposure, so the treatments were terminated.
... You are my second correspondent this month who reports sleeping with a medicated antipsoriasis shampoo on their scalps. Both of you are compelling me to give it a try, as my usual overnight concoctionScalp Cocktail (compounded by a pharmacist)is very expensive. Every year (it seems) NPF writes about the camps for kids with skin problems, including Camp Horizon, and your experience confirms their glowing reportage. One year NPF published a first-person article written by a counselor. It must be a remarkable happening. I wonder why there are no camp-like experiences for adults (except as counselors at the kid's camps)?
From the tone of your letter, Michelle, it sounds as
though your P has neither decimated your self-esteem, nor inhibited
your active life. It's highly likely your daughter will grow up similarly
strong, even if her P worsens. That's the secret to being able to find
happiness within this life state, isn't it, Michelle? To be the recipient
of unconditional love and empathy, to be expected to be no more nor
less than your best regardless. Thanks for another poignant pointer
to that truth. -Ed