Sunday, September 22, 2019

Psoriatic Arthritis Setback

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What a week it has been! I went to the orthopedic surgeon on Thursday because of pretty severe hip pain. In my mind, the surgeon would give me a cortisone injection in the hip, send me to PT and tell me to come back in three months. In three months, they would then recommend hip replacement. Boy, was I wrong! 

As it turns out, the pain stems from my low back. After nearly three decades of arthritis, it should have come as no surprise to me when she said, “extensive degeneration” in my spine. That degeneration is pinching nerves and that’s what’s causing my hip and leg pain. She also told me I have scoliosis and showed me a very curved spine. Since I was visiting the knee and hip team, I had to get on the schedule of the spine team. In the meantime, I got a prescription for Gabapentin and PT. I see the new doc in 4 weeks where, if I’m not experiencing noticeable improvement, I will need an MRI and then, potentially, a steroid via epidural.

When I was in the doctor’s office, I was so glad to have scheduled my appointment with my surgeon’s compassionate PA. While my surgeon is very skilled and did a fantastic job on my knee replacement, he’s not known for his bedside manner. The PA answered all of my questions and didn’t flinch by my tears.

When I left the office, I completely fell apart. All I could think about is how far I’ve come since I started having symptoms of psoriatic arthritis. That was 28 years ago and I remember the pain like it was yesterday. I remember how hopeless and uncertain I felt then. That’s how I felt on Thursday.
Way back in my first signs of psoriatic arthritis (PsA), I couldn’t imagine how I would get up and go to work day after day. It never occurred to me that at 50+ years old I would still be able to work. But here I am! On Thursday, I wondered if this was the beginning of the end. It was a hard day for me. So, I did what I do. I jumped into action. I scheduled four weeks’ worth of PT at a local wellness center where I will be able to use the therapy pool. I scheduled a immediate appointment with my mental health therapist for that very afternoon. She helped me find a lot of clarity about my strength and perseverance and when I left her office, I felt much more hopeful.

Setbacks happen. PsA is a difficult disease to manage. For days, months or years, you might feel fine. And then one day you wake up and remember how bad this disease can make you feel. Know that this is normal. As many times as I’ve been through really bad times with PsA, my life is more good than bad. In fact, it’s pretty great. I’ve got an understanding family, caring friends and a job that allows me to use my skills to make a positive impact.

It might come as a surprise that I consider PsA one of the positive things in my life. After all, with this disease, I wouldn’t be the person I am today. I wouldn’t be as determined or as compassionate. I’ve met so many people I know through the chronic disease community as part of my patient advocacy. This disease has given me the opportunity to make a real impact on other people through my volunteer work.

Don’t give up on yourself. True, your life with psoriatic arthritis, or any other chronic disease, might not be what you expected. It’s the life you have now and it can be satisfying and fulfilling in spite of the struggles.

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