A Journey of Resilience

Nothing in life can ever prepare you for the news of a life changing illness of any type. This was the case in 2006 when I was diagnosed with Complex Regional Pain Syndrome or CRPS for short. A rare neuro-autoimmune disease that causes constant chronic pain and can also affect the immune system, skin, muscle, joints, and bones it is known as the most painful chronic pain condition there is. The other name of which people refer to CRPS is “the suicide disease”, for which no explanation is really needed.

I live in Regina, Saskatchewan. If you don’t know where that is that’s in Canada. As a happily married father of two very special girls, family life was everything and more leading up to diagnosis. I held a position in senior management with a large company and my wife had decided to leave nursing to pursue her desire of being a stay at home mom. Life was good! Then our world was suddenly flipped upside down as a simple surgery to remove a cyst in my left wrist went really wrong.  Immediately after the surgery I started experiencing a burning in the arm. Not to mention the severe pain and swelling that was going on. Something was very wrong and the pain getting more unbearable by the day.

This would set off almost an almost two year journey into trying to figure out what was causing such horrific pain. I also began to display numerous other symptoms associated with CRPS. Symptoms like sensitivity to touch and temperature, waxiness of the skin, hair loss, and disfigurement to name a few.  Eventually, I would visit upwards of twenty physicians being tested for every disease you could think of. Yet no physician was able to make any form of a diagnosis. Without answers trying to treat this disease was difficult. Eventually, I was unable to use my hand at all, and the pain left me unable to function on most days. So I would be forced to go on permanent disability.

After virtually exhausting all the resources within Saskatchewan I would have to seek help outside the province. With paperwork already filed with the Mayo Clinic and preparations being made to go, we received a phone call from a friend who is a physician and knew of a specialist who specialized in chronic pain. We flew out to Vancouver, B.C. where the specialist was able to make the diagnosis of CRPS and tell me there was no cure, and that there was very little he could do to treat me.  As I walked out of his office I remember being hit by a wave of emotions!  Suddenly everything was becoming so real. Things like fear and anger were trying to take over my mind. I didn’t know what to feel or where to turn next.

As if this wasn’t enough, after an injury to my ankle CRPS spread into my left ankle and leg. This would eventually mean that I would need to use a cane to walk at all. To say the journey up until this point was frustrating is an understatement! Not wanting to focus on the negative however I remained optimistic in my pursuit to find the help I needed. Through a series of tests that I would have in order to try and manage the pain in my leg, I would finally find a specialist who could help with a treatment plan.

It had been almost two years up until this point but I finally felt as if there was a little bit of hope that something could be done to help me manage this disease. I had finally been referred to a neurologist who works with a small team of professionals who worked with CRPS patients. This is the part of my story that I get so frustrated with because we had gone full circle only to end up right back here in Regina. Had other physicians or specialists been more aware of CRPS then quick diagnosis could have happened.

It was refreshing finally having a team of healthcare professionals who truly understood what I was living with. The goal was to try and help me gain back a quality of life I had lost and maybe more. So over the course of the next several months I would form my treatment plan which was to be a combination of medications and surgically implanted neuro-stimulators.  After ten major surgeries and extensive physiotherapy I started walking short distances. I also started working with a psychologist to try and help with aspects of my mental health that I was struggling with. These were both positive steps and gave me the motivation I needed to keep moving forward.

As I started coming to terms with everything I was going through with this disease I began to see that I didn’t have to let it hold me hostage. Sure, things might be good one day and bad the next but I could chose to be positive and move forward to the best of my abilities. I had to ask myself a really hard question. Was I going to let CRPS define who I am or what I can do with my life? There was still so much about my life that was so good! I was just having trouble seeing that through all the emotions. Once I figured all of that out, it made moving forward so much easier. It was at this point that I decided to start using my story to help others and to advocate and raise awareness.

There are so few resources available to those of us struggling to find diagnosis, treatment, or even support programs with a rare disease like CRPS. So in the middle of the night I wrote a letter to our Premiere outlining my story, similar to the one here asking him to declare Nov 2 CRPS Awareness Day in the Province of Saskatchewan. The goal of this was just to do my little part here in my part of the world. Before long this was in place and I now have a yearly event taking place. Right here in my city we have had Feb 28 declared Rare Disease Day, and I have started a Peer2Peer support group through the Rare Disease Foundation. I speak at, and attend conferences across Canada and the U.S. in order to try and raise awareness and create change. Those efforts are making a difference because here in Saskatchewan with the efforts of CRPS Awareness Day we have managed to see changes in the teaching curriculum for second year med students.

Trying to fit thirteen years into what I’m writing today isn’t easy because it would take a book to try and explain all the different ways that chronic illness affects an individual’s life. My story that I’ve outlined here for you today, really only touches the tip of the iceberg when it comes to what my family and I have had to endure. However, I’m choosing to see only positive and the things that bring me hope in my particular journey. Things like the levels of awareness that have been raised within my community and province. Or the personal friendships and support from different communities that I have gained along the way. I can’t say what will happen down the road but there are a lot of things that are in our control. What choices will you make?