Living with severe rheumatoid arthritis (RA) has shaped the course of my life in profound ways. After years of pain, medical treatments, surgeries, and setbacks, I’ve come out stronger. In this post, I want to share my story—one of overcoming physical challenges, finding the right medical team, and persevering in the face of constant adversity.
The Game-Changing Biologic: A Glimmer of Hope
For many years, I battled severe RA, trying different medications with little relief. When my unknown biologic came into the picture, it felt like a breakthrough. Suddenly, I was able to manage the pain and stiffness that had dominated my life for so long. My mobility improved, and I was optimistic about the future. But RA is a relentless condition. Despite the success of the biologic, my joints continued to deteriorate, and surgery became inevitable.
Facing Hip Replacement: The First Major Surgery
In early 2000, I was referred to an orthopedic surgeon in Winnipeg (Wpg). After reviewing my x-rays, he told me that the joint damage in my right hip was too severe, and I needed a complete hip replacement. The thought of major surgery was daunting, but I knew I had the best team of professionals on my side.
The surgery happened a few weeks later. Miraculously, I was up and moving the very next day, albeit with the help of a walker. It was a different type of pain than I had experienced before—this was a healing pain, not the constant agony I had been feeling when trying to sit or walk. After a few days in the hospital, I went home to continue my recovery. Within six weeks, I regained most of my mobility, and that healing pain slowly subsided.
The Unexpected Turn: Discovering My Neck Issues
A few months after my hip replacement, I went for a routine check-up with my orthopedic surgeon. During our discussion about my progress, he recommended replacing my left hip next, as it was similarly damaged. This time, I suggested they take a closer look at my neck before intubating me for the surgery, just to be safe. When the x-rays came back, they revealed something unexpected and alarming—I needed to see a specialist for neck surgery immediately.
When I met with the neck surgeon at the Health Sciences Centre (HSC) in Wpg, I was hit with shocking news: if I didn’t have surgery on my neck right away, I could be paralyzed from the neck down. My world turned upside down at that moment, and I reeled from the news. I knew I had no option but to go through with the surgery.
The Life-Saving Neck Surgery: My Journey of Recovery
The surgery was performed, and I underwent a C1-2 instrumented fusion. It was a terrifying time, but I came out of it with my mobility intact. I was sent home with a neck brace and began the slow process of recuperation. Six weeks later, at my follow-up appointment, my surgeon told me the procedure had been a success. I didn’t need any more surgeries for my neck, and the worst-case scenario of paralysis had been averted. It was an immense relief.
Another Hip Replacement: Reclaiming Mobility Once Again
In 2001, my left hip was finally replaced, just as my surgeon had recommended. The recovery was similar to my first hip replacement, with healing pain gradually fading as time went on. By the end of the process, I had regained full function in both my hips. This gave me a renewed sense of freedom, and I was able to return to traveling for my advocacy work.
One thing I found amusing during my travels was navigating airport security with my new titanium hips. I learned to give myself extra time since I consistently set off the alarms! But I was back on my feet and living my life, so a little inconvenience was worth it.
The Battle Continues: Knee Troubles and the Next Chapter of Surgery
For the next several years, I walked, traveled, and carried out all my activities without any significant issues. My advocacy work took me across Canada, and I felt empowered to keep going despite my RA.
However, by 2010, my knees started to bother me. They were stiff, sore, and made it difficult for me to get up, walk, or sit comfortably. I went back to my orthopedic surgeon, who took x-rays of my hips and knees. After examining the images, he told me that the damage in both knees was severe—so bad, in fact, that he couldn’t tell which knee was worse. He was surprised I had waited so long to come in and told me that I needed knee replacements for both knees.
The decision was made to replace both knees at the same time. I spent the winter preparing mentally and physically for what I knew would be another grueling surgery and recovery process.
Knee Replacements: Overcoming New Obstacles
In the summer of 2010, I went into surgery at a Winnipeg hospital and had both of my knees replaced. The medical team had me out of bed the same day, and I faced the reality of relearning how to walk with new knees. The pain was intense, but it was a different kind of pain—healing pain, much like what I had experienced after my hip replacements.
With family support and determination, I managed to get through the difficult recovery period. By the end of that summer, I was walking around my complex with a walker, gradually getting stronger each day.
Reflecting on My Journey: Gratitude for My Healthcare Teams
Looking back, I can’t express enough gratitude to the healthcare teams who have helped me throughout this journey. From the initial diagnosis of my severe RA to the surgeries that restored my ability to walk, their expertise and care gave me my life back, time and time again. I am beyond grateful for the biologic that controlled my RA and the surgeons who performed life-changing operations to repair my damaged joints.
Moving Forward: A New Lease on Life
Now, I am able to walk, travel, and continue my advocacy work. Every step I take is a testament to the perseverance, family support, and exceptional medical care I’ve received along the way. While RA remains a constant challenge, I have learned to live with it—and even thrive—despite the obstacles it presents.
This journey has been long and filled with pain, but it has also been one of resilience, healing, and gratitude. I continue to push forward, knowing that I have the strength and support to face whatever comes next.