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Re-invented Her Self-esteem
from Kelly Z.
Hi Ed. It has been a while since I wrote you but I wanted to respond to your current frame-of-mind brought on by your clearing [see August Briefing]. From the time I was diagnosed (age 12) until I was 18, about 80% of my body was covered including my face! That was hell on a child who was still developing her self-esteem. When I was 18, I was introduced to PUVA (Psoralen + Ultra Violet-A light). I cleared up 100%! It was as if I went back to being 12 and finally developed my self-esteem. I no longer hid in the locker room changing for gym class and I no longer saw everyone staring at me in horror. Instead, everyone appeared to be looking at me in a different light. Not that they necessarily looked at me differently, but they appeared different in my eyes. It was at this point that my attitude toward P changed. It no longer controlled me — I controlled it. I no longer felt helpless against this disease. There was something out there that actually helped me not to look like a freak! I was completely cleared for about 6-12 months. Slowly it crept back into the picture.
I am now 30 and have gone through several more rounds of PUVA, each one becoming less effective. Creams and ointments are a waste because it takes me about 20 minutes to put that gunk on and the improvement is minimal. I even tried methotrexate with NO results whatsoever.
But my attitude about P has not changed. I still control it (to a level) knowing that with PUVA I can clear up.
I do not hide under long sleeve shirts or pants (even in corporate America). I wear shorts and a bathing suit (not a bikini because of my weight) in the summer. I am happy to say that it never returned to my face after the first treatment of PUVA. The thing that concerns me now is not the effectiveness of PUVA but the increase in my chances of getting skin cancer, so I try to limit how much I use PUVA.
In addition to P, I am losing my hearing. Several people have asked me if I had my choice, hearing or cleared skin, which would I choose? There is no doubt in my mind that I would choose clear skin. This world Ed is a visual world. First impressions are a lasting one and unfortunately people are still not understanding enough to accept someone with P. The world deals with a deaf person better than a person with P.
Over the next 9 months, I am going to be a lab rat. I am becoming a research subject for my own reasons. I have signed up for the monoclonal anti-body Anti-CD11a study. I have read Stealth’s notes on the study and it appears that they were in the first phase of the study. Based on your diaries, I feel that I want to keep one and I will let you know how it works out. From my understanding, the anti-body is to suppress the immune system in relation to the skin only. It will not affect my internal organs. I guess we'll wait and see. I will give you an update as I proceed through the study. Rumors are that they have more lab rats than they originally estimated. I guess it is the flakers way of crying out for help. They remind me that this is not a cure but a gentler systemic drug. They say that when the drug becomes available it will have to be paired with some ointment or light treatment.
Must go back to work. Ta, -Kelly Z.
Ed’s Response: Thanks for your retrospective, Kelly. When one’s in a funk it often helps to hear from others who have been there. Your story humbles me because I’ve not had P as long as you have, and I did not have it during my formative years. In my case, the severe flaking came close to conquering an already aging sense of self-esteem. But now you have me rethinking.... Perhaps I was given an opportunity to re-develop my self-esteem. Perhaps my glass was half full rather than half empty. I do think that in many respects I am a better person because of P, more sensitive to other people, more tolerant, and the big one — more patient while being less complacent.
I had to stop and contemplate the hearing vs. flaking issue and, I must confess, my answer would be different than yours. My hearing is a principle source of pleasure (second only to reading). I’m the only person I know who has a full-blown surround sound system with a considerable library of classical, jazz and rock music in his office. I can work by myself and not miss the fellowship of others, which means I can flake away in private much of the time. But those hours alone would be hell without my hearing.
Odd thing: You mentioned that since you’ve cleared your face the lesions have not returned. I’ve pretty much had that same experience. However, until I undertook the systemic therapies, I continued to use a mild corticosteroid on my face where I knew the lesions were in hiding. It will be interesting [gulp!] to see if any rebound when I must stop the systemics will cause these lesions to reappear.
We look forward to your drug study diary, Kelly, so don’t forget to send it our way! -Ed