Developing psoriasis in her mid-30s after the death of her husband, Tracy S. found herself forced to give up windsurfing, the sport she practically lived for. But for Tracy, her psoriasis, bad as it became, was as much a beginning as an end. She works three jobs and is currently taking part in a clinical trial that has made a big change for her.
My two passions
I have two strong passions: farming and windsurfing.
Then: Windsurfing
I had been windsurfing for 12 years. I became quite well known for it and at one point I was writing for a windsurfing magazine. People would page me at work [saying] it's really windy and you should come here now. I would leave the office around 4:00 to go to what I called “board meetings” and be on the water by 6:00. After the psoriasis got worse it was difficult for me to change in and out of my wetsuit around people, so I have not gone windsurfing for 5 years now. I just didn't want them to see the sores all over.
Now: Farming
A friend and I started farming 4 years ago. It has been a lot of fun. One of the things about farming was that my grandfather had done it. So when an opportunity came up to do a farm, it felt good. We have thirty chickens and I think we have eight goats.
Goats have long memories. They hold grudges. They just glare at me, like. “Yeah, you're the one who gave me the shot.” They're cashmere goats, their fur looks like cotton balls. You just comb them like a dog until they struggle away and then you grab another goat. I mostly give [the cashmere] to friends who die for it, because they can't believe that they're getting natural cashmere.
And my day job: A state energy agency
I work for a state energy agency. I wrote something called the Governor's Energy Report. That was followed by a conservation report that describes the state of energy efficiency. Then I worked on an electric vehicle program, which was great fun. And now I'm really excited I'm working on oil and gasoline issues.
You know, I'm kind of an obsessive compulsive. I keep wondering if people who have my disorder are driven like this.
When my psoriasis started
I started with [psoriasis] when I was 35, after my husband's death. I knew what it was because my sister had it when she was quite young. I learned the psychology of it—you want to hide, you don't want to be around people, you don't want to show anybody your skin. You don't want anyone to look closely at you. Every time I gave blood I had to roll up my sleeves and the phlebotomist would say things like, “Eeew! What's wrong with you?”
Embarrassing moments
I remember walking to the office with one of my coworkers one day, who I really liked, who said “Oh, look! You have confetti in your hair! Isn't that pretty!” He wasn't teasing—he really thought I had confetti in my hair. That's how thick it was dropping off of my skin.
You know, you get up in the morning, and you have these scales all over your sheets. I also walked into my office one day not knowing I was bleeding through my dress, and one of my female coworkers thought I had an “accident.” It wasn't that, it was my psoriasis sores bleeding.
You know, that's the problem with this disease—you hide and hide and hide because you're ashamed, and if you're good at it like I am, nobody believes you're sick. There was a time that a female coworker didn't believe I was ill, so I took her into an office and that was the end of that discussion.
Doctors, treatments—and hope
People with psoriasis lose hope. Because this disease is treated too much like a skin disorder instead of an immune disorder, people really give up. One doctor flat out told me that there would never be a cure for this disease so I should learn to live with it. So I changed to a new doctor.
I researched out the best dermatologist and received a course of medications that did not work. I was pretty aggressive about trying to find medications that were right for me—and spent about 7 years getting worse and worse.
The thing that has shocked me about this disease is that some people who have been suffering for 10, 15, 20 years—longer than I have—are still being treated with cortisone creams. And that makes me nuts.
My experience with research treatments
Then this friend of mine said, “Why don't you think about drug trials?” So I'm on my third trial right now. The first two were not successful.
A time for bravery
[Now] I'm just working on getting well. It's been too painful thinking about the future. It's mostly just staying in the present.
One of the greatest things I have done in my life was to have the bravery not to care if I made mistakes. Like the farm thing—the worst that can happen is that it's not going to work out. The worst that was going to happen in windsurfing was that I wasn't going to get up out of the water. But I was out having fun while I was learning.
The Tracy that I try to project to the outside world is the good Tracy, someone they really like and enjoy, who is not a sick person. So I've been able to get out into the world, which is where I really want to be, and have friends and do things, instead of being alone in my room.
The importance of friends
There are only a few people outside of myself who really know what's going on. Those are the people that I call at night when I can't sleep, or when I'm in a lot of pain. I didn't even tell my boyfriend for 6 years. When he actually saw my skin he was pretty darn surprised. I felt it was time for me to let him get closer to me. If you're lucky, you find a person who can handle this terrible sight. I found someone who is a bigger person who can deal with me dropping scales all over my bed at night.
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