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My Ongoing Journey with RA

Living with rheumatoid arthritis (RA) is challenging, and for me, the first six years after my diagnosis were a rollercoaster of hope and despair. During this period, I tried every medication available, from NSAIDs to DMARDs, all under the watchful eye of my rheumatologist. Yet, each treatment failed, leaving me more incapacitated than the last. This blog shares the turning point in my RA journey—a journey that transformed my life thanks to a new biologic drug.

When you’re diagnosed with a chronic illness like RA, you expect that modern medicine will offer solutions. Unfortunately, that wasn’t the case for me. Despite trying various medications, including NSAIDs and DMARDs, none of them provided the relief I desperately needed. My condition worsened over time, and I found myself reliant on a wheelchair by 1999.

The year 1999 was particularly difficult. For about six months, I was confined to a wheelchair, and even the simplest tasks became impossible. Home care workers visited me daily to help with everything from brushing my teeth to putting on deodorant. My arms were too weak to lift, and I couldn’t even hold a toothbrush. Despite these challenges, I made sure my kids got off to school every day. But deep down, I was struggling with the reality of my situation.

That summer, my rheumatologist mentioned a new stem cell transplant study in the US. The idea was intriguing—could this be the solution to my severe RA? The prospect of traveling to the US for six to eight weeks was daunting, especially with young children at home. My husband and I took time to weigh the pros and cons. Ultimately, we decided against it. The risks were too high, and there was no guarantee that it would work. I couldn’t bear the thought of being away from my family for that long with such uncertain outcomes.

As Thanksgiving approached that year, my rheumatologist asked if I wanted to participate in a new drug study for RA in Winnipeg. This time, it was a biologic—a new class of medication that promised better results for severe cases like mine. After discussing it with my husband, we decided to go for it. What did I have to lose?

The study was a double-blind placebo trial, meaning neither the doctors nor I would know whether I was receiving the actual drug or a placebo. I was still in a wheelchair when I arrived for my first appointment. After completing all the paperwork, I received my first injection. I left the clinic feeling hopeful but cautious. After all, I had been down this road before with other medications that had ultimately failed me.

That night, I went to bed with the usual pain and stiffness. But the next morning was different. I woke up without pain. For the first time in years, I got out of bed without the usual struggle. I even got dressed by myself and greeted my home care worker at the door—standing. She panicked, thinking I would hurt myself, but I was ecstatic. I felt like I could dance! This new biologic had transformed my life overnight.

The following weeks were nothing short of miraculous. I regained my independence, something I had feared I would never experience again. Simple tasks that had once required assistance were now effortless. I could take care of myself, my family, and enjoy life in a way I hadn’t been able to for years. This biologic wasn’t just a treatment; it was a lifeline.

Looking back, it’s hard to believe how far I’ve come. The first six years of my RA journey were filled with pain, frustration, and a sense of hopelessness. But this new biologic changed everything. It gave me my life back, allowing me to be the mother, wife, and person I wanted to be. It’s incredible to think that a single medication could have such a profound impact.

My experience underscores the importance of medical advancements in the treatment of chronic illnesses like RA. While the medications available in the early years of my diagnosis failed me, the development of biologics offered a new, more effective solution. It’s a reminder that we must continue to support research and innovation in medicine.

Throughout my journey, I learned the importance of hope and perseverance. There were moments when I felt like giving up, but I knew I had to keep going—for myself and my family. It’s easy to feel defeated when you’re living with a chronic illness, but sometimes, the next breakthrough is just around the corner.

My family played a crucial role in my journey.  My children were always my motivation. Their unwavering support gave me the strength to keep fighting, even when things seemed impossible. Having a strong support system is essential when dealing with a chronic illness like RA. I always tried to show my sons that we together, could live a full life with RA.

For the past 22 years, this biologic has been a part of my life. It has allowed me to manage my RA effectively and live a full, active life. While there have been ups and downs along the way, I am grateful every day for the opportunity this medication has given me.

This experience has profoundly impacted my outlook on life. I’ve learned to appreciate the small things and not take anything for granted. Living with RA has its challenges, but it has also taught me resilience and gratitude. I’ve become more empathetic towards others facing similar struggles and more vocal about the importance of access to effective treatments.

While these biologics have given me a new lease on life, the fight against RA continues. I remain vigilant about my health, regularly consulting with my rheumatologist and staying informed about new developments in RA treatment. I’m also passionate about raising awareness about RA and advocating for better access to care for those who need it.

My journey with RA has been one of transformation—physically, emotionally, and mentally. The first six years were incredibly tough, filled with failed treatments and declining health. But the introduction of a biologic drug changed everything. It restored my mobility, independence, and hope for the future. Today, I share my story to inspire others facing similar challenges and to remind everyone that even in the darkest times, there’s always a glimmer of hope.