I have this fantasy. In it, my RA is sitting on my green couch, perched in the middle, not making a commitment to either cushion. It looks uncomfortable, its foot vibrating with nervous tension. Its hands are clasped and tucked between its knees, shoulders hunched as it shrinks in upon itself. I am positioned in front of it, pointing at it, leveling my index finger with a determination and ferocity so intense that any minute now, a laser-bright beam will burst from my fingertip.
“You may share my life — I will accept that,” I say in a voice that will not be denied, “but you may not control it!”
And the RA cowers.
I don’t remember a time without rheumatoid arthritis (RA). The first symptoms of juvenile rheumatoid arthritis (JRA) appeared when I was four years old, a deep, grinding pain in my right wrist after helping my father paint the living room. Most of my childhood and adolescence was spent in and out of hospitals, fighting back flares, fighting to keep function, once fighting for my life when my JRA went systemic and attacked my heart.
When I was growing up, there were very few medications for RA and none of those available worked for me. When puberty hit, my disease went supersonic. The next four years were spent in hospitals, going home only on weekends. By the time I was fourteen, my hips had fused and I could no longer sit, so I spent my time lying in a hospital bed, waiting for custom-made hip replacements. At sixteen, I had both hips replaced, enabling me to sit again. I went home, for good this time, in a power wheelchair.
After years of hospitals, medications and doctors, I couldn’t wait to be a regular teenager. All I wanted was to have as normal a life as possible and forget about having a chronic illness. So I joined my peers in high school, graduated and moved from Denmark to Canada. I got a couple of university degrees, found a job that I loved, traveled, went dancing (a lot of fun when you include a wheelchair), dated, volunteered and spent time with family and friends. In other words, I created a life. Throughout these years, my RA was on the back burner, simmered down by high doses of anti-inflammatories. It wasn’t possible to forget or ignore my disease, but most of the time I managed to find ways of living well with it.
And then in 2004 the disease came roaring back, consuming everything in my life and almost killing me. I had no choice but to shift my focus and make it all about RA while I fought the battle. Thanks to a new class of drugs called the biologics, I got a miracle: for the first time in four decades of living with this disease, I responded to a medication. Although that big flare has left me more disabled and in more pain than before, I did get my life back and I’m making the most of it.
Living with RA means coexisting with an unpredictable and cantankerous shadow that will, at random intervals, try to swallow your life. Sometimes it will succeed and everything else will be derailed for a time while you and your doctor fight to get ahead. Sometimes — hopefully most of the time — life will come first while the RA mutters in the background.
Even when you find a medication that works, it doesn’t solve everything. Although the RA may be suppressed, it still needs to be considered, sometimes coddled. It can be issues related to meds and their side effects or pain control and managing energy. It can be about connections with others, family and friends, developing a good relationship with your doctor or finding better or different ways to work. It can be about finding better shoes, traveling comfortably, doing chores or figuring out the least painful way to have sex. Having RA means your whole life has RA.
So how do you get to the place where it all becomes integrated in the every day, so you can focus on life, not the disease? How do you get to the “living well” part, to taking back control?
First, you need patience. It’s a process, a journey of learning. Finding ways to live with and around the disease takes practice. Discovering the path to taking back control of your life means taking wrong turns and hitting dead ends. Doing it on your own can be a long and sometimes lonely road of frustration and beating your head against a wall. Having a friend along for the journey can help. Having a friend who’s been there before can be even better. Someone who can show you the shortcuts and hold your hand when it gets dark and scary. A friend who’ll sit with you on a comfy couch, share a bottle of wine or a pot of tea, hand you tissues when you cry and give you the skinny.
Your Life with Rheumatoid Arthritis is that friend. It’s a series of books designed to be your portable go-to guide on your journey to reclaim your life. This book, Tools forManaging Treatment, Side Effects and Pain, is the first in a projected series of three. Each book will offer information, suggestions and tips for dealing with pretty much everything about living with RA. The goal of the series is to help you become empowered, take control of your life and go out there and live it.
Much of the information in the series and on the accompanying website (www.yourlifewithra.com) will be mined from my own experience — forty-five years of living with RA, at your service! As well, for the past four years, I’ve worked as Community Leader for the RA Community at www.HealthCentral.com. It’s been my dream job, one that has allowed me to learn much more about the ins and outs of this disease. Together, my personal and work experience combine to create a fuller picture of everything that goes into living well with RA.
Before we get started, a couple of notes.
When you need specific medical information or advice, you should consult your rheumatologist or family doctor. I don’t claim to be a medical expert and you shouldn’t view me as such. There is information and suggestions in this book, but they are of a general nature. Use them to start conversations with your doctor and check with a licensed health professional before you apply them.
Not once in this book will you see the terms “RA sufferer” or “suffering from RA.” There’s a reason for that. There are times when living with this disease is hard. Very hard. When you start the day crying in the shower and when pain shadows your every move. On these days, it’s not an exaggeration to say that you’re suffering. However, I strongly believe that to identify yourself as an “RA sufferer” makes it harder to cope. How you view yourself and how you interact with the world is reflected in the language you use. If your identity is one of someone who suffers, the disease is in control, not you. Being a “sufferer” makes your life about the RA first and foremost. My goals have always been to put the disease firmly in its place and to be in charge of my life. Everything in Your Life with Rheumatoid Arthritis reflects that philosophy.