Rheumatoid Arthritis

Rheumatoid Arthritis is a chronic, incurable autoimmune condition that causes the immune system to attack the tissues of the body.

Joint inflammation with heat, swelling and pain
Joint stiffness, particularly in the morning or after a long period of rest
Fever
Nausea, lack of appetite
RA can also lead to damage of other tissues such as lungs, heart, eyes, nerve tissue

There is no cure for this disease but it can be controlled through the use of medications to alter the immune system’s function. These medications can greatly improve function and quality of life, but often come with their own sets of side effects.

My Experience with Rheumatoid Arthritis

I began experiencing joint pain in my TMJ (jaw) joints at age 17. I saw various dental and orthodontic specialists but no diagnosis was made. In 2005, I had an incredibly fierce and debilitating flare when I was 6 weeks post partum with my firstborn. I did not know at the time but autoimmune conditions often go into “remission” in pregnancy but return with a vengeance in post-partum. I was referred to a rheumatologist but the wait time was 10 months and by that time that symptoms had subsided so I was not diagnosed.

My second baby was born in 2008 and that post-partum period was vicious. At 6 weeks post-partum I awoke unable to bend any of the joints in my arms. My joints felt like they were full of battery acid and any movement was torture. I felt feverish, flu-like and very miserable. Thankfully, my previous referral to a rheumatologist helped fast-track me to the front of the line. I had a blood test and was serologically positive for RA. We finally had a diagnosis and the on-going dance of finding an appropriate treatment began. With a newborn and a pre-schooler to care for I was completely overwhelmed. When I was unable to lift or change our newborn I was heartbroken. I struggled mightily with depression and grief for the enormous change in my plan for my life.

Over the years I struggled to find a good medication that would work for me. I am grateful for the support and ingenuity of my medical team. There is no quick resolution when dealing with autoimmune conditions. Medications can take months upon months to see if they are effective. The side effects can sometimes be as unpleasant as the illness itself. I have had several severe adverse reactions as well as two anaphylactic reactions to medications. Add in the perpetual balancing act of adding in steroids (prednisone, kenalog) to tamp down the raging immune system. It truly is a delicate and tactful process to discover the right combination of meds to work for the individual.

In 2012 I had given birth to identical twin boys to complete our family. I still cannot believe my good fortune to be blessed with four beautiful, healthy sons. My final pregnancy was carefully monitored and my medications strategized so that I avoided the debilitating 6 week post-partum nightmare.

While I was busy living life, my TMJ continued to degrade. I was routinely driving to Edmonton (5 hours round trip) to the University of Alberta for injections to help me function and reduce the debilitating migraines that were plaguing me up to 4 times per week. I had gotten to the point where I couldn’t even drive myself anywhere without triggering a migraine so severe I would have to immediately pull over and check into a hotel. We finally came to the realization that the best opportunity for me to keep up with life and my busy young family was a total bilateral TMJ replacement.

I was scheduled for my surgery in February 2014. The diseased joints were removed but the completion of the surgery with placement of the prosthesis was aborted due to the discovery of contamination in the OR. I waited until April 2014 for my second surgery to place the new prosthesis joints in place. Recovery was slow but steady, but in August 2014 I ended up with an infection in my right prosthetic which required twice daily travel to the hospital for IV antibiotics for many weeks. My kids got reallllly good at being patient and ate their fair share of hospital popsicles during this period of life. As a result of spending so much time in a hospital setting I ended up with C. diff infection so began an entirely new batch of antibiotics to treat that. It was an incredibly difficult season of life.

The repeated surgeries resulted in complete loss of nerve sensation in most of my face, lips and tongue. Speaking and eating became difficult due to frequently biting myself. As the new TMJ prosthesis settled into place my bite changed significantly. My bottom jaw had receded to the point where my lower incisors rested on my upper palate. It was decided that I would undergo orthodontics (braces) followed by a lower jaw advancement via sagittal split osteotomy. I underwent this third jaw surgery in 2018.

Over the 7 years that passed since my initial surgery I continued to have recurrent infections in that right prosthesis. Each time it reared its ugly head I would have to stop my autoimmune treatment, risking flare of my rheumatoid arthritis. Each time it was accompanied by frequent IV therapy at the hospital. We sadly came to accept that the only way forward was to remove the R prosthetic and replace it with a fresh one. It was during this time I started to really struggle with anxiety, panic and began seeing a therapist regularly to deal with medical PTSD.

In 2021 I underwent the initial surgery to remove the right prosthesis and antibiotic block was put in the empty space to give it time to completely wipe out any remaining infection. The hope was to have this gentamycin block in place for 3 months. Unfortunately, due to complications with COVID restrictions and surgeries I had to wait 9 months to finally receive my brand new clean prosthesis. The unfortunate side effect of waiting 9 months without a joint meant a lot of soft tissue compensation and asymmetry which I am still struggling to rectify today.

I am now on a very promising combination of medications that help control my disease and allow me to function. The largest thing I have learned along this journey is that when it feels like there is very little you can control in your life circumstances, you can always choose how you react. And I choose joy. In all things, I choose joy. Although my health has been a difficult struggle I am exceedingly blessed with an incredible family, support system and of course, horses. I have learned to celebrate my resiliency in the face of adversity and celebrate the small things every single day. Its not always easy, but it is definitely worth it.