The Show Must Go On: Rheumatoid Arthritis
Cheers To Rheumatoid Arthritis
This month I celebrate the two year anniversary of my RA diagnosis, and weirdly enough, it is cause for celebration.
If I’m being honest, I think I’m afraid, terrified to record what it is like to live with this disease. Scared even to call it that… a disease, but that is in fact accurate. RA is an autoimmune condition where my immune system mis-identifies my joints as a foreign body and attacks these joints as it would an invading germ or bacteria. The result is terrible swelling, inflammation and pain, and without treatment, the destruction of perfectly healthy joints. It often manifests itself between the ages of thirty and fifty years old, and so despite the fact that people I meet express the idea that I am so young to be suffering, I am actually right in the middle of the age range for onset.
It is now January 2019, which means I began to notice odd, seemingly benign symptoms almost 4 years ago. Some people with RA experience an acute onset, usually brought on by some type of physical trauma. My onset was slow and sneaky: sore, tired feet at the end of the work day, moderate pain in my hips and knees, stiffness in my feet when I first got out of bed. This was Fall 2015.
Fall is an important time for me - you see, I am a Performing Arts teacher. (In fact, I was little Jer Bear’s Drama teacher, musical director and improv coach!) During the 2015 school year, I injured my shoulder after crashing into two students during a drama game. (This may sound a bit wild for a public school classroom, but it is a common occurrence in the very physical development of theatre. There’s a reason we call it a ‘play’!) It was an injury that required a week off work and months of physiotherapy to settle the swelling and inflammation. I felt that I was affected more than I should have been by a simple fall, but I chalked it up to age. “You have to remember you’re not in your 20s anymore,” cautioned my mother, but it was at this time that I began to sense something might be wrong.
By the following summer, I was experiencing occasional numbness in my fingers and toes throughout the day, as well as even more pain in the morning. Getting out of bed was like walking on glass shards for at least 15-20 minutes. The stiffness and tenderness wore on until 11am, sometimes noon, then I would get 4-5 hours relief until supper time when my hands and feet would begin to cease up again.
A Google search of my symptoms led me to think it might be something more serious, such as RA, definitely autoimmune, and so I went to see my family doctor. She did everything right. She listened. She asked the right questions. She sent me for blood tests. Nothing came back. (It turns out 30% of people with RA do not demonstrate an elevated rheumatoid factor in basic blood tests - sadly, I belonged to that figure.) The only thing she didn't do was send me to see a specialist. Her recommendation at the time was regular massage, pain medication when needed, epsom salt baths and rest. I was teaching full-time, very physically demanding courses like Dance and Drama, and my youngest son was 3 years old. Rest was very difficult to find.
At this point, it gets blurry for a while. Looking back, I think I was in survival mode. I had what the Hubs called my ‘team of experts’, a group of professional women who were keeping my body going. I was seeing two massage therapists, one for relaxation and the other for very specific techniques for pain management, a chiropractor, and in the New Year of 2016, a naturopath and an acupuncturist. The combined expertise and efforts of these women managed my pain and symptoms, and enabled me to keep working and living my life, despite the growing chronic pain that had become a part of each day. I am so thankful for each of them - many of whom are still part of my disease maintenance - supporting me with (considerably less) pain management, and helping maintain my health, strength and flexibility.
In May 2017, I found out I was to teach two new courses; Grade 9 English and Grade 9 Core French. I fell into a tailspin. One new course, perhaps I could have handled that with my current health situation, but two? I felt overwhelmed and stressed out. Within weeks, I found myself in the middle of my largest flare up to date. Despite all the expertise, therapies and dietary restrictions designed to manage my pain and inflammation, I found myself unable to get the swelling down in my hands and feet, unable to manage the pain without medication, unable to work. I returned to my family doctor and asked for help. Actually, I begged. I pleaded with her to refer me to a rheumatologist and asked for a safe form of prescription pain meds. I left with a script for Naproxen, two times a day and a referral to the rheumatologist of my choice.
That was a tough summer. The heat had a dramatic effect on my hands and feet, and I was often puffy and sore. The pain meds helped take the edge off, but there was still a sense of never-ending discomfort. I wasn’t able to stand for long periods of time, I could no longer write as using the keyboard caused immediate pain in my right wrist, and dancing, jumping, running, walking for longer than fifteen to twenty minutes… all of these activities were out of the question. You remember, of course, that I was a mom with 2 young boys and a teacher of very active classes….
That Fall, I couldn’t work full time. It was one of my lowest points. I cried in front of my students as I explained that it was taking more energy than I had to teach 5 days a week and that I was going to be taking Wednesdays off until further notice. I was sleeping most of the weekend and going to bed at the same time as my children. I had no social life, no time alone with Hubby and no energy for managing our home and finances. Things were shit. I felt like a poor parent, a terrible wife and an incompetent teacher.
Then two years ago, I parked on a side street in downtown Halifax and hobbled my way up to a rheumatologist’s office on the second floor of the Professional Centre. The appointment began with a conversation. She asked me to explain what had brought me to her office. Within fifteen minutes, I had an initial diagnosis. “Your story is that of rheumatoid arthritis,” she said. She did send me for further blood work (more specific and expensive testing that would show I had superhuman amounts of inflammation in my bloodstream) and gave me a very thorough physical exam where she plotted my affected joints on a strange map of the human body. The doctor told me another 6 months without treatment, and I would be walking with a cane. As it is, I have permanent damage in the joints in the toes of my right and left feet, in my right wrist, and in the fingers on both hands. I cried, sobbed actually, right there in her office. She passed me a box of tissues with the reassurance that I was young, otherwise healthy and strong, and we were going to treat this disease aggressively and quickly to prevent any further progression or joint damage.
Finally, a diagnosis. A prescription. A disease. It was cause for celebration. I do feel lucky. I have responded perfectly to the initial prescription (Methotrexate) and dosage. The full body xray showed no progression past my ankles and wrists, which is good news as RA can affect lung tissue. There has been no further damage to my joints and most days I am pain free, or at least able to tolerate the discomfort. I have not had a serious flare up in almost a year. And greatest blessing of all, I have been given the perspective of disease, a remarkable lens through which to view my life.
The big Ds (disease, divorce, death, disaster) are checkpoints, if we allow them to be. They are a moment of pause and reflection to take stock of our lives… yes, they cause a wee bit of YOLO, the knowledge that this is it. Health and life are not everlasting and we gotta use the time we have. It’s cheesy, but it’s been real for me. I have never experienced ongoing illness like this and as a result, I’ve been changed.
And so now, I celebrate - I raise a glass to my diagnosis and my disease, and the new lens it’s given me through which to see my life, my health, my passions and the ones I love. It’s altogether too short, the time we have to do the things we love, to be the person we want to be, to care for those most important to us. I wish that each of you reading this might never have to experience illness or disease, but chances are you will. We are human, after all. However, if and when you do, I hope for healing, and the clarity and insight that comes with walking through the that dark night into light.
Cheers to you, reader, to Sickboy and of course, my Rheumatoid Arthritis!
jeremie & mo circa 2006