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|Coping with Rebound
Previous email: Cyclosporine the Only Thing That’s Worked (August '00)
Oh, I am embarrassed! My about 5 years of suffering P somehow became 25 years [in the August email]. Like most of you who became flakers later in life, I just keep going because it's the only option. I have made 3 promises; to my husband, to my husband about my son, and to one of my best girlfriends, that I would not end my life. I've been a cockeyed optimist all my life, and that attitude keeps me going. It ain't easy!
Thanks for the suggestion about Soriatane. The derm wanted me to try it. I read the foot-and-1/2-long list of possible side effects and said "no way!" The side effects I've had to deal with so far have been bad enough. When I ended the Cyclo in '99, my 60% P came back as 75% cover. As I said, I also had lots of emotional turmoil that didn't help. Friends and family tried to be helpful: "At least it's not on your face and hands."
Praise God for Elocon — that's been keeping my face clear. The spotting is all over the back of my hands now, and my palms are peeling like a sunburn. When I ended the Cylco [again] in June '00, the rebound was wicked. My scalp is now 95% covered. Everywhere I had spots before, I now have them 3 times as bad. I've decided to wait to go back on Cyclo for when I get really bad, when the pain from the spots is practically unbearable.
This all brings me to coping. Let's see, the partial hysterectomy, the resulting marriage problems, the depression that sunk in so deep it has taken several years and numerous meds to bring me to a fairly normal way of life, plus those stupid flakes everywhere ... hmmm ... coping. I have been extremely fortunate to have a primary care doc who knows how to deal with depression.
I have been just as fortunate to find a wonderful psychotherapist. In her office I can vent, I can say unreasonable things. Then we work together to find ways for me to keep going. Since I have made the decision to keep going, I have decided that P will no longer get me down. I have it. It's
not curable. It flares, itches, flakes. I do the oils and lotions. All I can control is my attitude. So there! I refuse to let this stuff defeat me! I brush off any attempts by "helpful" passers-by to get into a discussion. I need my strength to keep going rather than educate others.
Well, Ed, more than I intended to write; hope it makes some sense. So I cope by sheer, grim, determination. Smile! -RIA
Ed’s Response: Thanks for replying to my response last month, Ria. (I asked Ria in the August mail to write back with details about how she coped with the serious rebounds.) Also thanks for correcting the mix-up about 25 versus 5 years. You’re depression makes more sense to me if your condition has become this serious in only 5 years. (In fact, your case sounds like a repeat of my own, when my P arrived and exploded between 1989 and 1995.) Don’t be embarrassed by the mistake. Or, think about this one: In my book Flake: Confessions of a Psoriatic, at one point the text says that psoriatic skin cells grow "forty times faster than normal." That’s supposed to be "fourteen times." Now, that’s embarrassing!
Reading this additional detail about what you’ve been through convinces me we’re cut from the same cloth. Neither one of us is likely to reflect back on the nineties and consider them "our best decade."
Your depression seems mitigated by a strong penchant for common sense, especially in the way you are approaching meds. I abstained from taking the systemics for almost a decade because I, too, feared the side effects — or did not consider my condition "debilitating enough" to risk those side effects. Eventually the P did become debilitating and I — appropriately, I hope — changed my mind. You appear to be "pulsing" your use of cyclosporine (using it to clear, but not for long periods to maintain clearance) and you are holding it "in reserve" for when your P gets "really bad." To me this suggests you are adapting and assuming some control over your P. As you put it, "All I can control is my attitude. So there! I refuse to let this stuff defeat me!" You found the key, I think ... attitude.
Please stay in touch with us, let us know how things progress. If I issued membership cards to FlakeHQers, yours would be in the mail right now. -Ed