By Ashley Krivohlavek, as told to Stephanie Watson
It started when I was 12 years old. I went to get a haircut, and when my stylist took one look at my scaly scalp, they told me I had lice. I tried everything from lice shampoos to having my mom dig through my hair for hours, but after 2 weeks of treatment it was still there.
When I finally went to a dermatologist and learned that I have psoriasis, I was relieved. The doctor reassured me that it was something we could treat with special shampoos. The first shampoo I tried was coal tar, which smelled awful. It took days of washing to get the odor out. I was embarrassed to go to school. Finally, we landed on a prescription shampoo that didn't smell bad and put my psoriasis into remission.
I Can't Move
My psoriasis was under such good control that I pretty much forgot that I had it until 6 years ago. I moved home with my parents to finish my master's degree and to work for my dad's chemical company.
One night in September, I went to bed feeling perfectly fine. The next morning when I woke up, I couldn't move. My joints were stiff and painful.
I went to see a rheumatologist, and he ran me through a list of questions. When he asked, "Do you have psoriasis?" I said, "No." Then it came back to me. "Oh wait, yes I do."
He told me I have psoriatic disease of the joints. I figured it would go the way of my skin plaques -- I'd take medicine, go into remission, and be able to move on with my life.
One Drug After Another
The first medicine I tried was hydroxychloroquine. I had a horrible reaction to it. My stomach was so upset that I could barely eat anything for 2 months. I couldn't hold anything down. I lost about 25 pounds.
Figuring that oral medicines didn't agree with me, my rheumatologist and I decided to put me on methotrexate, which I still take. It's an injection. Because I have a vasovagal reaction to needles -- a sudden drop in my blood pressure that makes me feel dizzy and sick to my stomach -- I have to use an autoinjector to give myself a shot.
I've also tried just about every biologic there is. It seems like I've been on a different drug each year. Apremilast worked well. Unfortunately, it didn't agree with my stomach. Other biologics would work for a while, but then they'd gradually stop working and my swelling and joint pain would come right back.
My Life With Psoriatic Disease
During a symptom flare, which happens with the change of seasons -- fall to winter and winter to spring -- I'm so exhausted that I can go to bed at 8 p.m. and sleep until 11 the next morning. Or I get "painsomnia," which is when I can't fall asleep until 1:30 a.m. and I'm back up at 3:30 or 4 in the morning because I just can't get comfortable.
Trying to get up and out of bed is a struggle because I'm so sick and tired. In the middle of a bad flare, it can take me an hour and a half to get my body moving in the morning. I do a lot of stretching and move gradually -- going from the bed to a chair and sitting for a while before I get up.
Heat is essential to keeping my joints mobile. If a joint is swollen, I'll put an ice pack on it instead. I try to stay away from nonsteroidal anti-inflammatory drugs (NSAIDs) because of my stomach issues. I do take methotrexate once a week to control my joint inflammation, plus folic acid daily to ease the brain fog, fatigue, and hair loss that the methotrexate causes.
I haven't been able to work a full-time job in years. And when I am on the job, I take things slow and ask for help when I need it. I'm fortunate that the nature of my dad's business is cyclical. I can work less in the winter, which is a difficult time for me, and more in the summer when I feel better.
How I've Adapted
Exercise is an essential part of my routine. I lift weights and do Pilates and yoga. I modify these routines to avoid putting too much stress on my painful joints.
My rheumatologist recommended that I eat a Mediterranean diet, which is pretty much how I've always eaten. I've been mostly vegetarian my whole life. I believe that eating a plant-based diet has kept me healthy. I feel a lot better when I'm on it.
The support of my friends and family has been everything to me. I'm so proud of the people in my life who have stuck with me through this journey. My friends are there to listen whenever I need to talk. And when I have a flare, my parents step in to do the things I can't do for myself, like cooking and doing laundry. They've all been great, and I'm so grateful for them.
I tell others who are newly diagnosed with psoriatic disease to take it slow. Be kind to yourself. You're going to be frustrated, not only with yourself but with your situation. Don't hesitate to talk to a professional if you need help.
When I was first diagnosed, my mind wasn't in a good place. Autoimmune diseases run in my family. I had seen my grandfather become disabled from rheumatoid arthritis and pass away from its complications. An aunt passed from lupus. I thought I might have the same outcome.
But I caught my psoriatic disease early and treated it. I've had some joint damage, but fortunately it's been minor. Even though I've had this condition for so many years, I'm still in the process of finding the right group of medications that will temper the inflammation.
It's going to be a journey, but I have the tools and the support I need to face it.
Ashley Krivohlavek lives in Oklahoma and continues to work for her parent's chemical company. In addition, she works with several advocacy programs including The National Psoriasis Foundation and Global Healthy Living Foundation. Her goal is to make health care accessible to everyone.