Week 1: (Leading Up To Diagnosis)
In November 2008, I caught a severe cold and went to the doctor. After the exam, the doctor gently took my wrists and asked if I had RA, noting my bent fingers. I explained to her I was only 52 years old, not realizing that RA can affect anyone at any age. She referred me to a rheumatologist, and before my first appointment, I did a ton of research on websites such as CreakyJoints.com, WebMD and RA Warrior. I had a lot of questions: How did I get this? Is there a cure? Does it cause premature death? And more.
At my first appointment with a rheumatologist, which included a full-body X-ray, I was shocked to learn that I had joint and bone loss/damage in my small finger, toe, and wrist joints, as well as having spinal stenosis. I always had assumed that the pain and stiffness I experienced was related to previous, difficult spine surgeries, and never thought about the possibility of arthritis.
Even though I had a rheumatologist, it took a while to find the right rheumatologist who allowed me to partner in my care. I changed doctors several times. I had to advocate for myself – a lot – along the way, even escalating an appeal through my insurance company to get a mobility scooter when I got to the point where I could not walk without pain in my feet and back. It was important to me that I felt heard by my doctor, and in 2010, I finally found the right one – I’ve been his patient for ten years and counting. He is well informed and encourages questions, which is essential to my healthcare.
Week 2: (Understanding My Disease)
Early on in my RA diagnosed, I would explain to family and some friends my daily pain, fatigue, and joint pain. Their replies were shocking: “RA is an old person’s disease,” “It’s just lack of exercise,” “Take some Tylenol or Advil,” “Suck it up and quit complaining, you don’t know what pain is,” and this list goes on. It was frustrating and hard to hear those statements. Now, since I joined two specialized websites that have patients from all over the U.S. and a chat blog, I feel supported and never have to hear those statements anymore.
Through these websites, I have a community of compassionate RA/autoimmune people who have the same or similar joint pain, fatigue, immobility, surgeries, etc. We share our concerns on a daily basis and support each other. On these sites, I personally encourage anyone to find a doctor who does Vectra testing. I explain to people what the Vectra test is and how it can help their doctors evaluate and monitor their treatment to hopefully slow down or put their RA into remission.
The RA websites also have been a huge source of information. In the first years of my diagnosis, I tried to learn as much as I could about my disease through websites like CreakyJoints and RA Warrior, as well as reading books, magazines, pamphlets, and asking my rheumatologist questions. I also exchange ideas in my online support groups. In the support groups, we share information and give hope to those suffering from joint pain, flare-ups, fatigue, and other issues. My motto is “One person helping another” through an unwanted disease in hopes to educate and share our journey and to provide love and caring words to this community of people throughout the United States. Having a support system is important in managing my disease.
Week 3: (How Vectra plays a role in [guiding treatment decisionss)
Around the beginning of 2015, my doctor wanted to try a new type of lab test, called Vectra. He explained that Vectra was different than the regular “every three months” full lab work I had been having. He explained that the 12 biomarkers used by the Vectra test could help in guiding our medication decisions and monitor the disease.
After getting the first results, which showed a high score, he started to adjust my medication. He changed how often I gave myself my Enbrel injection and methotrexate. As the years went by and I had two Vectra tests per year, he noticed the Vectra score mostly going down. When my score went up in 2017, he again adjusted my medication once more, and my score began going down again. In July 2019, I was doing well enough to be considered in borderline remission! So, for now, I believe I am getting the right treatment as he monitors me closely, which includes Vectra tests twice a year.
A few years ago, I became a Vectra Ambassador. I fell in love with this program, and I am proud to be a Vectra Ambassador today. What a journey! Although advances are being made with medications all the time, I wish more rheumatologists knew more about and the importance of Vectra testing. For me, Vectra saved me from further joint damage and more severe pain. I believe Vectra, when administered by a knowledgeable rheumatologist who can adjust medication and do what’s necessary to prevent further bone and joint loss, is an essential tool for patients.
Having lived with RA for over 10 years, I have learned that one of the most important parts of living with RA is accessing my many support systems. My wife, my true supporter, is the best cheering team I could ask for, and I’m grateful for having her in my life. Next is my rheumatologist, who has been compassionate and available, always taking time to provide me information and answer my questions. Finally, I have a few websites I belong to with RA and autoimmune patients and moderators. I give and receive support on these sites.
I have a saying …. “You can’t laugh and cry at the same time.” So, I try to instill humor with others who suffer this disease, and when they laugh, they forget about their pain and their disease. (Me too). It’s not a cure but a distraction that has worked for me for the last 3 years. I do what I can within my range of motion and try to enjoy each day.
For me, an important part of living with RA is being realistic with treatment goals. My treatment goals are long-term, with no set dates. Most of us RA’ers are in a hurry for a quick fix or a cure. I personally approach my disease, “One Day At A Time.” Dealing with daily pain and fatigue is just that … DAILY. Each day is different, depending on how I get out of bed and start my day. I have a gift for inventing things to help make my daily functions easier. I enjoy and get satisfaction finding unique solutions to get things done! Stay tuned to the Vectra Voice for a future blog post from me about some of my best tips!