Rheumatology Care Inspired My Advocacy

Do you see a rheumatologist for your psoriatic arthritis? From the very start of my 28-year journey with psoriatic arthritis, I have been lucky enough to have rheumatology care and inspire my advocacy.

I was 22 years old when I was first diagnosed. I was unable to get up off my floor after leaning with my back on the couch and watching the floor-model television. (Yes, I am that old!)

When I finally got up and got to the emergency room, I needed bloodwork. I was amid some arthritic disease.

But what kind? Doctors had no idea. I was referred to a rheumatologist. Sounds totally corny, doesn't it? The truth is, he was a great doctor. 

Rheumatology expectations and the first visit

Do you ever wonder what you should talk to your doctor about? I know I did. I felt like I was expecting the doctor to take the lead. 

My expectations: I would walk into the room, and he would ask a couple of questions and then tell me exactly what needed to be done to fix my health. I knew I was in an awful lot of pain with literally every step I took. 

My goal was to see this doctor and he would know the magical answers to stop the pain. I would walk away completely fixed.

When I arrived at the office, it seemed nice. This was the first real doctor I had been to besides my family doctor. Little did I know that it would be the first of many appointments.

The nurse called me to an interior door. The office was small and just had two exam rooms: a main nurse station and an office with a closed door. I could only assume that it was the doctor's office. 

There was a standard exam table. I sat down there, and the nurse asked questions. When did this start? How did it start? Is this the first doctor I have seen?

I was a little surprised by the amount of questions. She looked up and must have noticed my overwhelmed look. She assured me the questions were to help me to get the best info for the doctor to help me. 

My first encounter with psoriatic arthritis

The doctor came in and smiled. He introduced himself and took over. The nurse moves and he sits down.

The doctor asked me, "How much do you know about psoriatic arthritis?" I explained I had never heard of anyone my age getting arthritis. 

As we talked, I felt quiet and unsure. "Where is your pain?" Doc asked. Well, I could definitely answer this question! "My knee on my right leg. It buckles"

I found that this was normal with the disease. The doctor explained that there was pain control and damage control. 

The doctor told me he wanted to order X-rays and an MRI. He explained that I should have a baseline and see if there is damage to my joints.

It was all scary hearing the different testing. The doctor noticed my hesitation," Melissa, I want to offer you some advice. You are new to this whole experience. I do not want to scare you, but this is lifelong. It can be controlled but will never stop. You are in full control because it is your body. When you need to ask questions, ask them! Do not be shy!" 

Learning to advocate for myself and others

I looked at him. "Doc, what kind of Damage? How bad does it look from what tests you already have? Do you think I will be crippled" Suddenly, I found my voice and wasn't afraid anymore. He gave me the power to advocate for myself. 

I learned that my arthritis was considered an early diagnosis but severe. Though I no longer have him as a doctor because he retired, I have never forgotten his wisdom on how I should advocate.

Now, I help others advocate for themselves and bridge the gap between doctors and patients. Recently, I have been working with drug companies, doctors, and patients helping to advocate.

I think back to the beginning and try to think of all the things I would have wanted to learn or know. This helps me keep my focus on helping others.

Learning that you have as much say in your care as your doctor does is so freeing. You must have the ability to fight for yourself because if you don't, no one else will!