Living and Thriving with RA: Jesse’s Story
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. Here, women who live daily with RA share their stories and their experiences, hoping to inform and inspire others affected by the disease.
Jesse Knori, Sun Valley, Idaho
I was diagnosed with juvenile idiopathic arthritis (JIA) eight years ago, at age 10, and was later diagnosed with RA and spondyloarthrosis.
When symptoms of JIA began, my knees and ankles would swell up so much you couldn’t verify that there was even a joint in the area—my knees were the size of large grapefruits. I couldn’t tie my shoes or brush my hair, and I couldn’t move my neck without my shoulders moving—and when I did, I would feel a burst of pain like an electric shock. These symptoms soon spread to both knees, my right elbow, my neck, my hips and spine, and my wrists and fingers.
I tried acupuncture, chiropractic treatments, Celebrex® (celecoxib), and fish oil before finally seeking medical help, which, early on, included regular cortisone injections. At age 16 I began an ongoing trial of various arthritis medications, one after another, including Cambia® (diclofenac) and Enbrel. Now I take Humira® (adalimumab) and Indocin® (indomethacin).
I can’t say I wish I never had RA because it has brought me so many great things. I feel that with a chronic disease, I already know it’s going to be hard—I already know I’m going to be in pain every day—so why not just accept it and move on?
Before my diagnosis and in the early years thereafter, I was really into volleyball, swimming, and track. Because of my diagnosis, I had to quit all three due to the strain on my joints. I am a pretty competitive person, however (a day without exercise and I’m a little on edge), and I kept searching for another interest. My friends urged me to try cross-country skiing during my freshman year of high school, and it changed everything. While originally more of a social, fun scene, it soon became clear that Nordic skiing was something I loved deeply. I committed to the sport, and I haven’t looked back.
Now, having graduated from high school I spend my days training for competition as a member of the Sun Valley Ski Education Foundation post-graduate development team. We spend about 600 hours training year-round, and that is a lot of wear and tear on the joints—especially during the summer and fall months, when running and roller-skiing are part of the training plan. Training often wears at my joints to points where I have to ski with my arm in a sling or stop doing lower-body weight lifting because my knees are not in a strong enough place to stand that much pressure. Still my love for the sport keeps me moving forward toward my goal of one day competing in the Olympics.
My life with RA hasn’t been easy, but it has made me the person I am today, and I am so grateful for that. I would not trade the challenges in my past for anything. I believe that without great struggle and significant setbacks, one cannot discover who one truly is. One of my favorite quotes is by Maya Angelou: “I can be changed by what happens to me, but I refuse to be reduced by it.”
Tanya Martin, Torrance, California
I was diagnosed with RA in 2004, but I believe I had symptoms from a very young age. As a child I was often tired; I had pneumonia six times before I was 12; and, I had very swollen eyeballs. Though the swelling may have been related to allergies, it still stands out in my mind as a possible early indication of my later RA diagnosis. As a teen, I was often fatigued, and I had foot pain, spine pain and swollen fingers, which I did not report because I was certain I would just be told that they were not serious and that I should just ignore them.
After I had my children, I went to the doctor several times and asked about the continued fatigue I was experiencing. The doctor always said that my blood tests didn’t indicate anything abnormal. However, in 2003, when the fatigue became more extreme and I also began experiencing more pain, fevers and stiffness, my sister recommended I see a rheumatologist—who ultimately diagnosed me with RA.
I have dealt with many symptoms related to RA. In addition to pain and stiffness, I have experienced: optical migraines and other types of debilitating headaches; pins and needles and numbness in my arms, legs, hands and feet; frequent urination during hard flares; breathing and choking issues; thyroid issues; and dizziness.
I am managing my RA by taking Cimzia monthly, vitamin D daily, B-12 shots weekly, and Ambien as needed. I also drink lots of fresh juice and try to walk daily and spend time outside in the sun as I can. I also try to incorporate stretching, yoga, and other exercise into my days when I’m able.
In my daily life, I do my best to anticipate how I will need to accommodate my disease; I know I can’t sit in chairs without backs or stand or walk for very long. I recently purchased a wheel chair, which I probably should have done earlier—my denial of the severity of my situation led me to put this off for longer than I should have.
At this point I am striving to educate other patients, doctors, nurses, caregivers and friends about RA through my blog and through advocacy work. I hope that by sharing my experiences with RA, others can see what RA does in a real patient, instead of thinking of the disease as a checklist of symptoms. I think this is important because often symptoms can be ignored by doctors who don’t understand the extent of certain issues in the lives of their patients. Right now, for instance both my younger sister (who also has RA) and myself are experiencing extreme pain and stiffness in the neck and upper back, but neither of us are finding support in this area when we express our concern to our doctors. This needs to change.
I would urge anyone who has a friend or loved one with RA to consider offering them help and compassion. Assistance with simple chores like grocery shopping, cleaning or preparing meals can make a big difference, as can special gifts like massages. And, helping to spread awareness about RA through organizations like the Rheumatoid Patient Foundation (rheum4us.org) will also go a long way toward helping ensure we can make the changes we need in healthcare a reality.