Rheumatoid Arthritis: “I’m a Nurse Not a Patient”

Kathy FurbeeIn this blog post, Kathleen Furbee shares her story of being diagnosed with and treated for rheumatoid arthritis and how after 10 years of treatment she is grateful for the medical advances that allow her to live a full and happy life.

By Kathleen Furbee            

When I was in my early fifties I came down with an odd sort of “flu.”
It started with typical flu symptoms but was accompanied by a crushing sort of fatigue. I had never before experienced such exhaustion. It was difficult for me just to rise and walk across the room.

I was a busy person and didn’t have time for exhaustion. I had a challenging new job, a family, friends, an elderly father I cared for, a big garden, and, at the time, a neighbor with a wound I was dressing every day. As a nurse, I used to do those sorts of things for neighbors. Before my illness I could walk the quarter mile to my neighbor’s house easily, without even thinking about it. After the “flu,” however, I just couldn’t make it. I was so weak.

I saw my family doctor, who ordered an RA factor. When that came back positive, she sent me to a rheumatologist, who, surprisingly, had an opening within the month.

At my first visit the rheumatologist gave me what I perceived to be a skeptical look when I described my fatigue and pain. I also told her about the “red spells” I had experienced for several years prior to this, in which I periodically ran a low-grade fever, became very flushed, headachy and emotionally labile. Doctors had attributed my symptoms to perimenopause, and, I suspect, my imagination.

The rheumatologist ordered lab work and when my anti-CCP level came back high her attitude toward me changed. I had rheumatoid arthritis (RA), she explained, and, being a nurse, I understood what that meant. I had cared for many RA patients in my career, and remembered, with a sense of dread, the deformed hands, the twisted limbs and the grimaces of pain that I had seen.

The rheumatologist prescribed a disease-modifying antirheumatic drug (DMARD) for me, but I opted to wait three months until after my daughter’s wedding to start it. I didn’t know how my body would react and I felt I had too much to do to think about it at the time. In retrospect, I believe I was in denial about the change in my health status. I was not someone who took medications. I was a nurse, not a patient, and switching roles was a difficult transition. During the three months I chose to delay, my fatigue only deepened and the pain in my hands and wrists and feet, the twisting of my fingers, the lumps growing on my joints, and my generalized achiness increased.

I did experience some improvement with the drugs once I dared to try them, and I have learned since that, yes, medications ARE my friends. As the disease has slowly progressed one drug and then another has been added to my regimen.

A big turning point in my treatment came when I started using an injectable biologic. It was scary to contemplate, and I resisted trying it at first. There was risk of lymphoma, infection, and the cost was exorbitant. Thanks to good health insurance and the drug company’s patient assistance program I have been on the drug problem-free for several years now. There was one particular moment when I knew using it was a good decision. I found myself carrying two cups of coffee, one in each hand, for my husband and I to drink. I hadn’t even thought about it when I picked them up. Before the new drug it was difficult, painful, and precarious for me to try to carry just one cup using both hands.

It’s been 10 years now since my initial RA diagnosis and I am walking, living, and functioning independently. My symptoms have even improved in many ways. I do still have unpredictable RA flares and periods of exhaustion. I have learned to plan for rest periods after particularly busy days, such as when I care for my small grandchildren or do something strenuous outdoors. Overall though, I am enjoying life, living mostly pain free, and I am so very grateful for the medical advances, and my access to them, which make this possible.

Kathleen Furbee’s short stories, essays and poetry have been published in a variety of literary journals, including KestrelAnthology of Appalachian Writers and Fed from the Blade: Tales and Poems from the Mountains. She is in the process of retiring after more than 40 years of nursing and is looking forward to spending more time with her four grandchildren and her fictional characters.

Thank you, Kathleen, for sharing your story about your RA journey with our readers.

If you have a story to share with our readers about participating in a clinical trial, overcoming adversity, or living with a chronic condition, please let us know. We’d love to have you guest blog for us. Guest blogging helps others outside of your disease area learn about your struggles and discover your passions. We will help promote your website and social media accounts, as well as your favorite advocacy group. Contact us to get started sharing your story now!

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