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Rheumatoid Arthritis Through the Eyes of a Patient

Rheumatology Practice Management October 2018 Vol 6 No 5 - Patient Perspective
Andrea Zlatkus, CPM, CHRC
Editor-in-Chief, Rheumatology Practice Management
President, NORM

 

I have been in the rheumatology field for approximately 23 years, and I have seen many patients with rheumatoid arthritis (RA) come through my practice. As a rheumatology manager, I can sympathize with the various struggles they have, including concerns over the cost of their therapies. I would say I am a very compassionate person toward our patients.

Although my compassion for our patients is very real, it does not compare with the compassion I feel for my co-worker, Lisa—a very dedicated employee who is also involved with several activities outside of the office. She is passionate about our environment and loves animals. She also engages in exercise programs that would challenge anyone without RA.

When Lisa began suffering from RA flares, I witnessed firsthand the pain she felt in every step she took, and the stiffness in her gait and movements. Our staff also noticed her suffering. It broke our hearts that with all of the treatments we had available, we were not able to help her more. I asked Lisa to share her journey with you. As you will see, she can relate to our patients in a way that I cannot. She is a patient advocate and will fight for each and every patient. Here is her story.

Lisa’s Story

As an employee at a busy rheumatology practice, I feel that I have a unique perspective given the fact that I am also a patient here. In 2002, I was diagnosed with RA at 40 years of age, and began seeing a rheumatologist shortly thereafter.

At first, I thought that I had just stubbed my toe very badly, but I could not remember doing it. It was one of my middle toes—a toe that is not very easy to stub. After weeks of limping around, I made an appointment with a podiatrist who said he thought that I had RA but could not be certain until he received the results of my blood test.

I had heard of RA and remembered a family friend of my husbands, in her 70s, who had crippling RA. When she was diagnosed in her 20s, the only treatment she was prescribed was aspirin. I was worried (and still am) that I was looking at my future. The podiatrist informed me that if it turned out that I had RA, it was a really good time to get it because there were so many new drugs coming out. He referred me to a rheumatologist who prescribed methotrexate and sulfasalazine, and who told me that I needed to avoid alcohol and sun exposure while on these medications.

I was not prepared for my first major flare, which sent me to bed, unable to move. I remember trying to take 1 small step at a time, hobbling my way to the bathroom, which seemed a mile away. I remember crying and asking my husband, “Why did this have to happen to me?” No one in my family has this. Where did it come from?

It was difficult for my husband to see me in such pain and hard for me to let him see me in that condition. We are coming up on our 25th wedding anniversary and my husband is still with me. I try not to break down like that anymore and sometimes I think he actually forgets that I have RA until it prevents me from doing an ordinary task, such as opening a jar or gripping a doorknob, and I need to ask him for help.

I have been prescribed almost every RA medication available, at various stages of my disease, including infliximab, rituximab, abatacept, golimumab, and tocilizumab. I have been taking tocilizumab for approximately 3 years now. Although it does not seem as effective as it did when I first starting taking it, I know that I would be much worse off without it, so I remain on this treatment and also take prednisone as needed.

A turning point came one day when I was feeling kind of mopey. A man without legs came rolling by me in a wheelchair. He had a big smile on his face and seemed happy just to be alive. I made a pact with myself that day to stop feeling sorry for myself and to be grateful that I had legs. It helped me to put things in perspective.

Shortly thereafter, I was in the waiting room at my rheumatologist’s office, waiting to receive my next infusion. I struck up a conversation with one of the women in the billing department and mentioned that I was looking for a job. She jokingly asked, “Full time or part time?” and I said “either one.” Before I knew it, I was filling out an application and interviewing for the position.

That was almost 7 years ago, and the work I do has become a big part of my identity. I meet many patients who are newly diagnosed with RA or are ready to try a new treatment plan that involves a biologic medication. I tell them that I know what they are going through and can empathize with how they are feeling. Their demeanor immediately softens, and they become more vulnerable because they know that I can relate to their situation.

Although I would prefer not to have been diagnosed with RA, having this disease has led to some important and rewarding experiences with our patients. I feel that, in some small way, I am making a difference in their lives. My goal is to continue being the best health advocate possible on their behalf.

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Last modified: November 2, 2018
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