As told to Liz Sauchelli
When I was 30, I woke up one morning unable to move a single joint in my body. I’d gone to sleep the night before feeling unwell, but I didn’t think much of it. I was still recovering from the birth of my third child, and it had been a difficult one. I’d needed a blood transfusion, and in the 10 months since, my body had remained weak.
But that morning was completely different. I couldn’t make a fist to brush my teeth. I couldn’t bend my knees or my hips. I had no idea what was wrong with me, and I was terrified. I called my sister and she took me to the emergency room. The doctors didn’t know what was wrong with me, either, but they pumped me full of steroids to relax my joints. I stayed in the hospital for two weeks because every time doctors tried to ease me off the steroids, my joints would lock up again.
When I was released, I still had to rely on steroids and I got referred to an internal medicine doctor. Like the others, that doctor didn’t know what was wrong with me and told me to see a rheumatologist.
It took me months to get an appointment and in the meantime, I kept taking steroids. They
increased my appetite, and I put on 100 pounds in a matter of months. It was a huge struggle for me, to be sick and then packing the pounds on. I felt so deflated. The mental health aspect
was way more difficult to deal with than the physical symptoms.
By the time I saw the rheumatologist, I’d developed little red spots all over my body that
resembled chicken pox. He diagnosed me with psoriatic arthritis (PsA) — a form of arthritis that is related to psoriasis, a skin condition that causes itchy red spots all over the skin and has no cure. After a year of waiting for a diagnosis, I took it in stride. My main question for him was, « How do we make it manageable? » I had three children under the age of 10 and needed to be able to care for them.
The doctor put me on an incredibly strong chemotherapy and immunosuppressive drug that made me miserable. I took it every Saturday and the next day, I would feel so weak I couldn’t leave my house. It caused terrible headaches and messed up my digestive system. It was hard to function, but when I told my doctor, he dismissed my concerns and said taking the drug was in my best interest despite the side effects. I stayed on it for two years.
Then one day, I woke up and decided I was done. The drug made me feel terrible, and I refused to take it anymore. I found another doctor two hours away who actually listened to me. He put me on a different, less intense medication and my PsA was more manageable.
The next six years were a challenge. There was a lot of trial and error. Sometimes a medication would work for a little while and then stop being effective. Or it didn’t work at all, but I refused to go back on steroids after my first terrible experience. I also had extreme amounts of stress in my life at the time. The pressure of being a busy mom, working and going through a divorce took its toll on me.
Since I developed PsA, I’ve learned that stress can be a trigger for an outbreak. Food can be, too, and I’ve changed my diet as a result. I eat fruits, vegetables and organic meat, and try to avoid processed foods. At the same time, it’s all about balance: I’m still going to eat a piece of cake when I want a piece of cake.
I’ve also become very selective about who and what I allowed in my life. In order to feel as good as possible, I had to evaluate and improve every aspect of my life and find the best balance for me.
I also try to walk or lift weights every day. If I take even a couple days off, I can feel my body get stiffer, but as long as I’m moving, I feel OK.
About two years ago, I started using injectable drugs and it was a game-changer. Sometimes, I’ll get psoriasis patches on my elbows, shins and hands, but my joints have never again locked up like they did that first morning I awoke with PsA. Taking better care of myself has also helped me emotionally because I know if I have a flare-up, I’ve done everything I could to prevent it.
Another lesson I learned is that I need to be vocal with doctors about my needs. I used to think that if doctors told you something, it must be true. But that’s not always the case. I ask more questions now. If I don’t like how a medication makes me feel, I push to try a different one.
Now 44 and living with PsA for 14 years, I stick up for myself in a way I didn’t have enough confidence to do in my 30s. We are a military family and that means we move every three years, and each time, I have to find a new rheumatologist. But the transitions are seamless because I make sure I keep great records and advocate for myself.
I also find joy in my family. Four years ago, I got remarried to my high school sweetheart. We
have five kids between us, with two grandbabies and another on the way. I love to laugh and try not to take life too seriously.
The key about PsA is to catch it early and in that sense, I was lucky. I have connected with
people online who have spent years trying to get a diagnosis as their condition gets worse. It is crucial to be your biggest advocate and listen to your body, even — especially — if doctors tell you differently. Talk to other people who have PsA because it’s lonely when you feel like you’re the only person going through something. There are so many of us with PsA and nobody needs to fight it alone.
This resource was created with support from Bristol Myers Squibb.