Living and Thriving with RA: Deserae Constantineau

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Rheumatoid arthritis (RA) is a debilitating autoimmune disease that affects approximately 1.3 million people in the United States, striking women three times more often than men. The disease causes the immune system to attack healthy body tissue, leading to damage to joints and organs. Patients with RA can experience fatigue, joint pain, stiffness, fever, and pain. The impact of these largely invisible symptoms on patients’ lives varies, necessitating lifestyle changes and ongoing medical attention.

Despite the many challenges that those living with RA face every day, patients continue to strive to live full, meaningful lives within the “new normal” of the diagnoses. In “Living and Thriving with RA,” women who live daily with RA share their stories and their experiences, hoping to inform and inspire others affected by the disease.

Deserae Constantineau, 38

Phoenix, Arizona

Diagnosed with juvenile arthritis (JA) in 1983 at age eight, I have spent most of my life living with Arthur (arthritis). Though it was 30 years ago, I can still vividly remember the onset. It began in October, with a sore wrist. My aunt wrapped it with an elastic bandage, and I remember joking, “Oh no, I have arthritis.”

Two months later I found myself in gym class, unable to walk. The pain was excruciating. I spiked a fever, and my mother was called. I spent the next week in the hospital as they ran test after test to figure out what was wrong with me. My parents were relieved (puzzled but relieved) when the diagnosis was JA. “Thank God it’s not cancer.” We had no idea what was in store for us.

I have been in and out of a wheelchair since adolescence. I have been in and out of the hospital for most of my life. Yet I still lead a relatively normal (for lack of a better word) life. I’ve been on my own (with and without roommates) since I was 22. I earned a college degree and worked for many years in income development and community relations for a large national nonprofit organization. In 2009, however, I found myself on my last leg—literally. My right hip, the last real joint in my lower body, was shot. With the physical and emotional stress of a 60-plus-hour workweek and needing a major operation, I retired from the organization and went on long-term disability.

Going on disability was a very difficult decision. In a society that often measures you by what you do, I struggled with that question we all ask ourselves at one time or another: What am I going to do with my life?

Luckily, I was a founding board member of Arthritis Introspective, a national nonprofit dedicated to uniting people living with arthritis in the prime of life. Having a community of people my age who understood what I was going through made all the difference in how I settled into my new life. I became a full-time volunteer for the organization, serving as secretary of the board of directors and as the marketing and communications chair. I also volunteer for the Arthritis Foundation and do freelance writing and consulting.

Adults diagnosed with JA are a unique group. I have been on almost every medication that exists. I was on a biologic for years, with great results. Unfortunately, it did eventually lose its efficacy in 2005. Since then every other biologic has failed due to secondary complications. Currently, I take prednisone (oh, the love/hate relationship we have with steroids), Imuran® (azathioprine), and ibuprofen, along with various other pills for stomach, bones, and other issues. I also believe in complementary therapies such as acupuncture, reiki, and meditation.

I have found that when the disease is flaring and I can’t do much more than hobble to the bathroom and lie in bed, concentrating on my mind rather than my body helps calm me. My motto is This too shall pass, and I try to hold on to that when the storm hits. I know that the sun will eventually come out and I’ll be able to move again. I do try to maintain an attitude of gratitude (thank you, Oprah). On the good days, when I can walk with relatively little pain, I say a silent thank you to the Universe. On the bad days, I say thank you for the cat cuddling next to my aching body or the friend who comes over to help me out.

Life with Arthur is all about adaptation. Instead of saying, “I can’t,” I try to ask, “How can I?” I use a sock aid for dressing. I buy cute, slip-on shoes and adjustable sandals. I have an extended reacher in every room of my apartment. I have a jar opener and a shower chair, and the list goes on.

The point is, I make it work.

That’s the main message I would like to get across to women living with arthritis (and other chronic illnesses or disabilities), especially those newly diagnosed: You can make it work. As a woman with a disabling chronic illness, it’s my mission to show other women like me that we are still awesome and able to live fun, full, and productive lives! I may have two knee replacements, metal rods in both shins, and countless bruises and scars, but I can still rock a sassy silver skirt. And, believe me, I do!  _

 

For more information about Deserae or Arthritis Introspective, visit arthritisintrospective.org or contact deserae@arthritisintrospective.org.