My Psoriatic Arthritis Journey: Connecting With My Rheumatologist
After I gave birth to my daughter in December of 2012, my joints were painful and swollen, and I was exhausted, but I assumed it was just a result of having a baby. I figured giving birth does wonky things to your body, and it was all part of being a new mom.
That summer, though, my ankles still looked and felt like I was nine months pregnant, and I noticed a cut on the back of my foot that wouldn’t heal. I went to a podiatrist, one of the few specialists in my small Louisiana town, and he said I probably just stepped on something sharp. He gave me some topical medication and sent me on my way. But then, I noticed dry, flaky skin around the area, and told the doctor; he said it could be athlete’s foot. I took all kinds of medications and creams and nothing helped. And then, it started to spread to my other foot. My heels got so painful and dry that I had to walk around on my tiptoes. I knew something was wrong, but I figured that the doctor knew best.
Then, in January, the same thing started happening to my hands. At that point, I knew this wasn’t just athlete’s foot or some other mild problem. I went to my primary care physician, and he diagnosed me with atopic dermatitis. He gave me a steroid cream, which cleared up my hands a little but didn’t affect my feet. I tried to get a dermatologist appointment, but the only dermatologist in town was booked for eight months. I started to feel desperate, until my friend said I should go to her aesthetic dermatologist. Even though she usually focused on cosmetic fillers and skin rejuvenation, she was still a dermatologist, so I went in to see her.
"This Is Psoriasis"
The second I walked in the door, the dermatologist said, “Oh my goodness, your psoriasis is so bad!” I told her my doctor had said it was a fungal infection. But she looked at me and said, “Honey, no. This is psoriasis.” She sent me to see her husband, a nearby dermatologist who could confirm her diagnosis. He told me the same thing, and got me started on a biologic medication.
I was so happy to have a diagnosis, but unfortunately, the first biologic didn’t work for me. My psoriasis actually spread to my shins and elbows, and my feet were in such bad shape that if I tried to walk, I would leave trails of blood behind me. I ended up having to quit my job because I just couldn’t walk or stand.
I went back to the dermatologist, and he asked me if I’d been having any joint pain. I told him my joints had hurt for a long time and I was really stiff, especially in the morning. Again, I just figured it was because I had a new baby. But he said, “I think you have psoriatic arthritis.” I had no idea what it was. He had me see a rheumatologist, who dismissed the diagnosis, telling me that a dermatologist can’t diagnose psoriatic arthritis. I decided that enough was enough—I’d run around to too many doctors and I needed answers. I had it out with her. I told her I needed her help, but she was just ignoring my problem. I walked out of her office and found another rheumatologist.
At our first appointment, I was just in tears. The new rheumatologist took one look at me and said, “we’re going to get you fixed up, I promise.”
Tackling Psoriatic Arthritis
After he confirmed it was psoriatic arthritis, I had a whirlwind of emotions. I was so happy that I finally knew what was wrong, but I didn’t know what my diagnosis meant. At that first appointment, nobody told me that my disease is incurable, and I’m going to have it for the rest of my life. No one said that my body could be 90% covered in scales and it could even land me in the hospital if it isn’t treated properly. I only found out how serious both psoriasis and psoriatic arthritis are after I got home and did my own research. I spent a lot of time on the National Psoriasis Foundation’s online message boards—they saved my life, in a way. My husband was wonderful and listened to me when I needed him to, but to read the story of someone else who knew exactly what I was going through was so powerful.
That’s when it became real to me. I realized this was not something that a medicine will magically take away. It’s something that’s going to affect me the rest of my life. It took a while for me to accept that.
I was also frustrated that I still wasn’t happy with my health care. I shouldn’t have had to turn to the internet for information; my doctor should have told me about the disease. So after a while, I found a new rheumatologist—three hours away. But that drive was and still is worth it.
Finding My Rheumatologist
Once I found the right doctor, his kindness and genuine care for me were so comforting. It took a long time for me to find someone I trusted, who treats me as a priority. But this struggle to find a diagnosis taught me how important it is to find the right care—and to find the right specialist. You can’t get the best treatment and take care of yourself if your doctor doesn’t listen, doesn’t empathize, doesn’t show that he or she cares for your wellbeing.
I went through many trials and tribulations just to find a diagnosis and the right doctor, but now I’m getting the care I need. I finally found a medication that worked, even if it means I have to drive three hours to get the infusion, wait three hours, and then drive back home. It’s worth it.
Now, I’m very involved with psoriasis awareness and support groups, and I tell everyone the same thing: when you’re choosing a doctor, you don’t have to settle for what you think you can get. It takes a lot of work, but if you don’t give up, you’ll find the right care. It’s so important to be in good hands—and it’s worth the struggle to get there.
Summer Scirocco lives in a small town in Louisiana with her husband, where she’s a community ambassador for the Arthritis Foundation and the National Psoriasis Foundation. She’s also an active volunteer with the U.S. Pain Foundation and other organizations across the country.