From Juvenile RA to adult RA – the many obstacles to care
Congressional District: VT01
Bone / Muscle Disease, Chronic Pain
Issues and Challenges
Lucinda has encountered: Invisible Illness
My story is one of a winding path to diagnosis, complications, and advocacy.
I was 13 when my right ankle started bothering me. It was stiff and achy. I was a dancer, studying in private classes, taking classes in school, and practicing all the time. I wanted to be a professional dancer. I also was a competitive roller skater, practicing and travelling to competitions around the country. I was very active and the pain in my ankle got in the way. My mom took me to the pediatrician who thought it was an injury and sent me to an orthopedist. He decided it was a ligament injury and put me in a cast for six weeks.
I was upset at my forced rest and could not wait to get the cast off and get on with my life. At the end of the six weeks, I knew that my ankle was still bothering me, and the cast treatment had not helped but had actually made things worse. My pediatrician ran more tests and determined that I had what they called back then, JRA. This was 1971.
I was started on a regimen of aspirin. I developed hives, so they stopped that treatment and then later restarted it with baby aspirin in small doses to try to sensitize me to the drug. The aspirin was not very successful, so I was placed on prednisone – yes, during puberty. I learned how to rest and reduce my activities when I had flares, and my life slowed down, and my activities changed. I no longer continued the dream of being a dancer.
Time passed and I had many times where I felt fine, and other times when I felt horrible. I went to college and was fine until the summer between my junior and senior year. I had a flare that caused permanent damage to my left elbow and causes so much fatigue that I spent much of that summer resting. I was hospitalized for tests and treatment. Nothing much worked, so they increased my prednisone. I distinctly recall the hospital staff running three different pregnancy tests, even while I was having my period and it had been several months since any sexual activity. I felt like no one listened to me. When my elbow started constricting and losing range of motion a rheumatologist gave me three consecutive steroid injections and I got an infection in the synovial fluid. I was a mess.
I continued in college, working, and studying. I graduated with many semesters on the honor roll and decided to go to graduate school, taking a year off to relax and work to save money for school. I lived in St. Augustine, Florida and felt better than I had in years. I went to graduate school and got my master’s degree and many hours of coursework for my Ph.D. I started having frequent flares again and had not really been on a good treatment or medication plan. I dropped out of grad school to work full-time so I could get health insurance and afford care and medication. I tried to see a rheumatologist but ended up finding a good internal medicine specialist. She was a godsend and tried to find me a good medication plan. Eventually she placed me on a time-release form of aspirin, and I had an anaphylactic reaction. I thought I was going to die. So, back on the prednisone.
I continued on that medication. It helped my RA, but it caused my blood pressure to go up and I wanted to get married and have children, so I went off of that medication, weaning slowly. I lost weight, my blood pressure went down, and I felt good. Flares were few and far between. I had one son and then another two years later. I nursed both of them and felt great. No one told me that pregnancy and nursing could cause remission, but I was just glad to have the energy to enjoy being with my children and my husband.
We moved to Vermont in between the birth of my two sons and I stayed home with my sons as long as I could. I noticed that my feet were starting to hurt all time around my toes and in the balls of my feet. I had never experienced this before, so I went to a podiatrist. He wanted to remove what he called nodules in my feet. Luckily, I decided to see a rheumatologist first for a second opinion. He told me that it was my RA back in full force. I had completed the new patient paperwork and listed my severe aspirin allergy, but this new doctor decided to prescribe me a medication that is contraindicated in patients with allergies to aspirin. I had asked my husband to look up the new drug in his offices PDR and once he told me that information, I decided to find another rheumatologist. That was 24 years ago, and I am still with that same doctor. She is one of the first doctors to encourage my advocacy. She felt my experiences and my ability to communicate and empathize with others could allow me to be a strong advocate.
I had some other bad experiences along with way.
I developed an odd thing that I call a super-flare. In 2008, I developed intense pain in my left knee. The knee became hugely swollen and red and hot to the touch. The pain was so severe that I woke up vomiting in the night, unable to put weight on my leg, or even for anyone to touch my knee or leg at all. I was upstairs and my husband and I were unable to even figure out how to get me down the stairs, so we called an ambulance. My heart was racing, and I kept vomiting. The ambulance EMTS were so kind and caring, but then I got to the ED and the situation turned into a nightmare. They gave me a shot of morphine and left me on a gurney. They never checked my heart, nor did labs – nothing. Three hours later they told my husband to take me home – no idea what was causing my pain, no idea of how to treat it, nothing. When her office opened, my husband called my rheumatologist and she told him to bring me in immediately. She removed a large amount of fluid from my knee and the white blood count was dangerously elevated. She put me on a high dose of antibiotics and was concerned about sepsis. She felt the ED staff were negligent and I filed a complaint with them. The doctors had viewed me as an older patient with arthritis, ‘just’ experiencing some arthritis pain. They did not listen to me, nor did they adequately examine or evaluate my condition.
This was a big turning point in how I conducted myself as a patient. All my past experiences combined with this one and steamrolled into me. I knew that if I did not learn to speak up and ask questions and demand better care, that I could die if I was not treated properly. I had always read up and researched my conditions, even before the advent of the internet, but I knew I had to step up my efforts to become the most informed patient, as I could not always trust medical personnel.
In 2010 I noticed that I was short of breath all the time. I went to my PCP to check it out and he heard crackles in the base of my lungs, so he sent me to a pulmonologist. She ordered a CT and it showed I had many swollen lymph nodes on my right chest/armpit area and two areas of ground glass opacity in my upper right lung. Punch biopsies of some of the lymph nodes was ordered, and a wait and see pattern for the lesions. I had to stop my Enbrel and Methotrexate while we watched the lung lesion, so increases in prednisone were necessary. One of the lesions vanished, but the other grew a focal center. The pulmonologist wanted to observe this for two years, but I enlisted the aid of my rheumatologist to argue for me for a more proactive process.
My case was presented to a multi-disciplinary committee and the recommended removal of the lesion, as a previous biopsy attempt did not go well. The lesion turned out to be an adenocarcinoma, which was categorized as Stage 1. The surgeon told me it was a surgical cure, and I did not need to follow up with oncology at all. I again worked with my PCP to push for a follow up appointment just to see what oncology thought. They recommended follow up CTs and appointments every 3 months. The oncologist and the pulmonologist also both insisted that I could never take any biologics again for my RA. After 2 years of all clear checks, I petitioned all my doctors to allow me to try the biologic medication again. I researched and made an informed statement presenting my case regarding quality of life, productivity, and already having long term exposure to the biologic medication. I agreed to get all pertinent annual cancer screenings – colonoscopies, chest CTs, dermo full body exams, mammograms. I have been cancer free since 2012.
It was not too long after this that I learned about advocacy through the Arthritis Foundation and I was able to attend a training and participate in an advocacy event in Washington, DC. I also completed this same type of activity with the American College of Rheumatology, even though I had to use a motorized wheelchair during this event. I enjoyed learning how to use my voice and my patient experiences and direct my needs and the needs of the programs to the staffers on the Hill. I also began to serve on the Benefits Advisory Committee of my union, working with our HR department on the health insurance plans for State of Vermont employees. The HR director has told me that I bring a very important voice to this work and that my contributions are valued. I have served on a roundtable with the press and others regarding prescription medication costs with my national congressional Representative and he recently used my story in a blog contribution to The Hill. I also communicate regularly with all my congressional representatives, both nationally and state. I feel like I can contribute in many ways towards the needs of patients with this horrible disease.
I do have to tell you that I experienced another use of the phrase, ‘it’s just your arthritis,’ from my PCP recently. I acknowledged to her that while her statement was technically valid, that it made me feel like she was diminishing my symptoms and the need for treatment and that made me feel like I should not seek or receive treatment for the issues I was experiencing and that was not helpful. The work of advocacy is constant and does wear you down, but we all must keep fighting every day. Whether it is fighting for appropriate language, removing hinderances to care and medication, or fighting against the high costs and insurance limitations of vital medication – the work continues.
My Motivation and Inspiration
My motivation initially was self-oriented - to get the care I needed and not be diminished by healthcare practitioners. Then I became motivated to help fight for others with RA.