I recently had the opportunity to read Carla Jones’ e-book titled “Death by Rheumatoid Arthritis” where she writes about her mother’s diagnosis and a long battle with Rheumatoid Arthritis (RA). As a sufferer of RA and its deliberating and unpredictable nature, I can relate to the mother’s struggle and her family’s many questions about this still quite confusing disease.
Carla’s mother, Celia Veno, was diagnosed in 1988 at which time her long and difficult battle with RA began. As Carla describes,
“[a]t fifty-eight my mother had the beginning of what would be the biggest battle of her life. In the spring of 1988, her hands and feet began to ache, especially in the morning. The smallest outing would tire her, drain her and even going to the grocery store was exhausting. Her general doctor wrote a prescription for blood work to investigate the problem. Her worst fear had been realized–the diagnosis: rheumatoid arthritis. Her faith and positive attitude prevented her from wallowing in self-pity. Frequently she’d say, ‘Just remember, there’s always someone out there who has it worse than you.’”
“Just remember, there’s always someone out there who has it worse than you.” I often utter similar words to myself on the days where I cannot get myself to sleep because of how much my joints ache. I think that strength is something that we find in ourselves when we least expect to find it. Celia’s diagnosis came at a time when most disease-modifying drugs were still in trial phases. In fact, aside from methotrexate (which has been around since the 1950s), there were not many options for aggressive treatment of rheumatoid arthritis in the 1980s and early 1990s. I envy Celia’s courage and that of my maternal grandfather who, similar to Celia’s father, died of heart related complications due to rheumatoid arthritis. While I was only a small child at the time of his premature death (he was only in his early 60s), my mother and aunts often say that the last few years of his life were long and very painful and that all he wanted was for the pain to end. I often tell myself that I am fortunate that my diagnosis came in 2008 and not in 1988 or 1958 but it does not make this disease any less difficult.
According to the Centers for Disease Control and Prevention,
• An estimated 46 million adults in the United States reported being told by a doctor that they have some form of arthritis, rheumatoid arthritis, gout, lupus, or fibromyalgia.
• An estimated 1.3 million adults were affected by rheumatoid arthritis in 2005.
• Twenty-two percent of the arthritis related deaths per year are those affected by rheumatoid arthritis.
• The mortality for RA patients twice the expected rate in the general population (1) and those with rheumatoid arthritis are five times more likely to die within the next five years than are those with milder rheumatoid arthritis (2).
• Mayo Clinic epidemiologists have found that the systemic inflammation characterizing rheumatoid arthritis may be to blame for the increased risk of cardiovascular death in patients with the disease.
When people (non-sufferers and even sufferers) think of RA symptoms, they think about the stiff, painful, and inflamed nature of joints. Most people cannot even begin to imagine the many complications of the disease that affect various parts of the body. That same inflammation that wreaks havoc on our joints also affects eyes, lungs, skin, the heart, blood vessels, and other organs of the body. Further, many of the medications prescribed bring with them unwanted side effects. In addition, when RA is a daily part of your life, it brings with it emotional stress that can lead to depression.
Celia Veno spent many years of her life bravely fighting and living with many of the most complicated physical symptoms of the disease. After visiting many specialists, she finally was diagnosed with spinal cord syndrome, which came because of the nature and complexity of her RA. By the time she was properly diagnosed, corrective surgery was not an option. The erosion of Celia’s vertebra in her cervical spine could have been caught by a simple spine x-ray and her life could have been saved if diagnosis came early enough. Further, if her daughters had not investigated and questioned her symptoms, they would have kept wondering what sealed their mother’s fate. Celia’s long battle with chronic pain was over on July 19, 2005, and the most important lesson that came from her death was Carla’s mission to bring about understanding and awareness of cervical instability in rheumatoid arthritis patients, of which a simple x-ray can diagnose, assuming the patient and/or patient’s family is aware of the symptoms.
The following are signs and symptoms of cervical instability:
• Weakness, paralysis
• Breathing difficulties (from paralysis of the breathing muscles)
• Spasticity (increased muscle tone)
• Sensory changes
• Loss of normal bowel and bladder control (such as constipation, incontinence, bladder spasms)
• Blood pressure irregularities
• Abnormal sweating / trouble maintaining regular body temperature
• Migraine-like headaches (3).
As I read Celia’s story, I realize that there were moments of her battle that year or two ago, would have brought me to tears, but the person I am today admires and envies her strength. I am often told that my own strength with RA and Fibromyalgia (FMS) is one that, too, can be admired, but if anything, it is God’s guidance on a daily basis that allows me to keep fighting, and I thank God for my strength and my ability to accept and learn from his testing. I hope that my strength can even reach half of what Celia’s was at the time of her death because her strength reminds me why RA advocacy and education are so vital. Celia should not have suffered but she did because RA is a condition that brings with it more questions than answers. In my case, diagnosis took ten years and the damage is irreversible, but I am not angry at the medical community or God. If anything, I push and I ask for education and awareness about arthritis and autoimmune disease. My conditions have not made me angry or bitter, but instead they have made me a better person. Of course, there are days when I just want to be left alone or I want sympathy, but neither of these things changes my diagnoses. Therefore, I can make a choice to dwell or a choice to advocate and educate.
I will now share with you Ms. Jones’ words on the importance of advocacy.
My readers, be my fellow advocates whenever necessary, to empower those around them with more knowledge of this unpredictable disease called rheumatoid arthritis. One may never know who you will interact with in your future. You may be a healthcare professional, treating a patient. Perhaps you’re a physical therapist who hasn’t considered cervical damage as a possible roadblock as to why your patient with RA just can’t tolerate movement due to their headaches. You may be a parent of a child with RA, needing to ask the right questions about cervical degeneration at their next rheumatologist’s appointment. You may be the one with RA and are starting to experience these seemingly unrelated symptoms.
Not only does rheumatoid arthritis have the capacity to take away your ability to function in your daily life, it can completely cripple you, steal your independence, and then eventually kill you. Don’t ignore the warning signs. Don’t avoid your rheumatologist and stop putting off that much recommend spinal x-ray. It could be the last thing that you do.
I join Ms. Jones in her message about the importance of advocacy and education about rheumatoid arthritis and its complicated nature. With awareness and education, we can save many lives, including our own because every life is valuable to someone.
You can download “Death by Rheumatoid Arthritis” through the publisher’s website for a small fee. A percentage of the proceeds from the sale of the eBook will go to the Arthritis Foundation.
(1) Wolfe F. The natural history of rheumatoid arthritis. J Rheumatol. 1996; 23 (suppl):13-22.
(2) Pincus T. The underestimated long term medical and economic consequences of rheumatoid arthritis. Drugs. 1995; 50(suppl):1-14.
(3) Jones, C. at p. 25. Medline Plus, A service of the U.S. National Library of Medicine and the National Institutes of Health, Spinal Cord Trauma Jan 1, 2007.