Facing Forward is a series that shares the lives of people living with arthritis and other invisible illnesses. The goal of the series is to see how we are similar and how we are different – and to remind us to keep moving forward because we aren’t alone!
Location: Ottawa, Ontario, Canada
Diagnosis: Juvenile Idiopathic Arthritis (JIA) / Rheumatoid Arthritis (RA)
Age at Diagnosis: 14 years old
How are you currently treating your condition?
I've been taking biologics to treat my disease since 1998. The effects were nothing short of a miracle - I felt a significant difference within 12 hours of taking the injection. At the time, biologics weren't available in Canada (still pending with Health Canada approval) but my parents found out about them and set up an appointment with a rheumatologist in Boston to see if we could obtain access to the drug. My parents paid out of pocket for the medication for two years until the drug was approved in Canada. Yes, you've got that right, that's $25,000/year! I think they did what any parent would for their children if they could and for that I am forever thankful. From that point on, my grades in university went up, I was in a lot less pain, and I felt like a real person again. I'm really not sure where I would be without biologics.
I think exercise has had just as much of an impact on the disease. I work out three times a week doing everything from Zumba, muscle conditioning to Pilates and Yoga. I actually participate in these aerobics classes with healthy, able-bodied people! Biologics set the foundation to control the disease but exercise has maximized what my body can do. Surprisingly, I can do a heck of a lot even with the damage done by arthritis over the last 24 years.
What are the biggest challenges you have faced since your diagnosis?
The initial diagnosis of JIA when I was 14 was a pretty significant life challenge. I struggled with coming to terms with it and add adolescence to the mix and I remember my teenage years as a very dark time in my life. It made me grow up really fast and to this day I feel like I lost a part of my childhood. But it also prepared me to take on life wholeheartedly and to adapt to whatever challenges life presented me. I learned discipline, hard work, and to never give up. I have to work twenty times harder for the "normal life" everyone else has. So this prepared me to take on the ultimate challenge...the birth of my sweet boy, Charlie.
I first started having difficulties breathing in my eighth month of pregnancy. I had a cold that improved on its own except my breathing was still labored. I was admitted to the hospital three times in the final five weeks of pregnancy. The Internal Medicine team was stumped. No one knew why I was having difficulty breathing. I was diagnosed with asthma but my lungs seemed fine. One day before my baby was born, the doctors suspected my breathing problems were as a result of a flare of the cricoarytenoid joints (which control the opening and closing of the vocal chords. A flare would impact breathing and/or the voice). I knew I was at the end of the road. I needed to concentrate intently for every breath. If I got upset, angry, or cried, I wouldn't be able to breathe. I was terrified for me and my baby boy.
My airway just kept closing in until I could no longer breathe. My blood pressure spiked to 220/160 and I had a seizure. I crashed but luckily I was being prepped for a c-section. I think somebody upstairs was smiling on me that day as we both could have died. To this day, I can hardly believe how my baby boy is just so perfect.
After the surgery, I was admitted to the Intensive Care Unit and when the breathing tube was removed the next day, nothing had changed. I was sent for emergency surgery for a tracheostomy. A week later, I went home with a newborn baby and a tracheostomy tube in my neck.
What are your favorite tips and tricks for managing everyday tasks?
Caring for my two children, Claire (8 years old) and Charlie (3 years old) is demanding. My children were never great sleepers so it didn't take long until I was exhausted and then, of course, my arthritis would flare. It took some experience but eventually I learned that if I didn't care for myself, I wasn't effectively caring for my children. By the time my second child was born, I would sleep every time he napped during the day. These challenges also prompted me to try to find answers, and when I went looking I could hardly find any information. For example, how can I open this car seat when my hands are so badly damaged from RA? How can I carry my child around for hours on end when my body hurts so much? How do I get up in the night with my baby when I already suffer from debilitating RA-induced fatigue? This is when I decided to launch a pregnancy and parenting project in my role as a Board member of the Canadian Arthritis Patient Alliance.
How do you manage to keep facing forward every day?
I've learned to adapt to so much in life so I'm now confident, after 24 years of living with Rheumatoid Arthritis, that I will be able to handle most of what life throws at me. Don't get me wrong, there is still stress, especially when it affects other people around me, like my husband or children, and I feel helpless. But for the most part, I have to accept that I can't control what is happening to me, but I can control how I respond. Having a near-death experience also puts things in perspective. I realize I need to take care of myself, not just for me, but so that I'm there to watch my kids grow up.
If you could go back to diagnosis day and tell your past self one thing, what would it be?
Don't be afraid. You'll be able to get through it. Your body may be weak but your mind, attitude, and spirit is not. Keep family and friends close and don't push them away.
Do you have a blog you would like to share?
I don't have a personal blog, but I have been a member of the Canadian Arthritis Patient Alliance (CAPA) Board of Directors since 2006. With the support of CAPA, I'm leading the pregnancy and parenting with arthritis project. The first phase of the project is the launch of a survey to indetify patient information needs as it relates to pregnancy and parenting. The ultimate goal is to develop an educational resource for people living with arthritis. You can learn more by visiting this page on the CAPA website. There is a link to the survey, which is available in both English and French. Please share the survey information widely as it is crucial that we hear from as many people as possible!