What Were They Thinking?

I started experiencing psoriatic arthritis symptoms when I was in my early twenties. Like so many people who live with PsA, it took decades before I got the correct diagnosis.

By the time I got a diagnosis and was being treated for psoriasis arthritis, I was already 50 years old.

The impact of pain

Throughout my life, before a diagnosis, there were times the pain would be so bad I could not even lift small items. My fingers constantly felt like they were falling off. I couldn't comb my own hair.

I will never forget the nurse who told my mother that I didn’t have good hygiene and I probably contracted polio. This was back in the sixties. What was she thinking? I would say this was the first time I have been accused of having poor hygiene, but it wasn't the first or the last.

It's more than just psoriasis

Initially, the pain I was experiencing would come and go on a daily basis. My feet would be so sore, that I would whine in pain. My shoulders and elbows would be constantly in pain. My fingernails would lift at times as the scar tissue grew underneath. It was not a pretty sight.

While some of this may have been caused or related to my psoriasis, the doctors I saw never tested or even mentioned psoriatic arthritis.

What were my doctors thinking?

The funny (or frustrating) part about my journey is that the doctors would tell me that this excruciating and debilitating pain was simply in my head. Even so, they would give me pain medication every time I visited. Again. What were they thinking? The pain kept getting worse as the years went by.

My life changed when I was finally advised to see a rheumatologist at fifty years old. He finally diagnosed me with psoriatic arthritis. I could finally get the right treatment. It took over twenty-five years to come to this point. I laugh every time I share this part of my story. Yes, he diagnosed me with PsA, but in the same breath, he told me that black people didn't get psoriasis. What was he thinking?

Navigating treatment options

We are all different and we have to take and try different treatments to find out what may work. Isn't this crazy? You have to tell your doctor what you want out of your treatments. For me, I just wanted to be able to walk without pain and that is what my doctor focuses on. You really have to know your body.

Currently, I am lucky enough to be on a biologic. Honestly, I have tried several because sometimes they just stop working for no reason. It’s heartbreaking when the medication stops, but I suffer so much less. I cringe every time I think about how hard life would be for me if I was not getting the right treatments in my life right now.

One frustration after another

My biggest challenge was not my treatment for psoriatic arthritis but getting the insurance company to approve it. I had to go through a process called “try and fail first”. This meant I had to fail on a cheap drug first. Spoiler: I always got worst.

This had to be done before I could get a more expensive drug that I was confident would help. I recommend contacting your insurance billing department to discuss and argue this approach. Again, I asked. What were any of them thinking?