With chronic disease, we’re stuck in a body with a mind of its own, often reminded of our lack of control more than we’d like at the most inconvenient of times. We wish so much to control some aspect of the disease. But what if we can try to beat it at its own game by becoming our own advocate? Of course, there are those days when all you want is to stuff your head under the covers and pretend none of it is happening – an all too common progression into depression. You just don’t want to care anymore because it’s hard enough, it hurts, and it’s exhausting. Finally comes a day where the desire to know more clicks on inside your head, refusing to shut off until you ask those questions and admit that you need more answers; “what if?”, “what else?”, and “why not?”
In the beginning years of my disease, it was enough just to get through each day with my symptoms and leave it to my doctor to figure out. We tried methotrexate and plaquenil. Eventually, not enough. I still took Naprosyn but was taken off after 5 years due to the bleeding risks. Cortico-steroid injections were given in my fingers, knees, and the bum injection that is supposed to alleviate symptoms for a month. Still not enough. Then came Arava and there went some of my hair; though it did provide relief from major disease activity. I mostly rolled with my RA care back then, as I was generally lost and overwhelmed from just dealing with the pain, finishing high school, and trying to be college-bound. Part of my attitude was due to being in the regimented military medical system until cobra coverage aged me out at 23. I was very fortunate in that my first Rheumatologist, at the base hospital, was thorough in assessing my symptoms. He would inspect my inflamed joints, especially my damaged hands, and would explain the ins and outs of what was going on, what this meant, and the available options. My 2nd Rheumatologist, a civilian doctor, was assigned to me while I laid in my ICU room trying not to die from a heart valve infection. Strangely enough, despite the massive infection, my disease was not flaring as badly, so they didn’t prescribe any treatment. My heart pretty much won priority among the team of doctors caring for me. Once recovered, treatment continued with Arava until my symptoms worsened in the winter of 2006. I started auto-injecting Humira biweekly that Spring, continuing to this day. Even while having beneficial treatment, the urge to ask questions does not fade away. If anything, it motivates me to keep my eyes wide open despite the gnawing fatigue, looking for the latest information and treatment “just in case” my DMARD stops working, “just in case” a new symptom arises, and “just in case” I can’t cope.
It wasn’t only Rheumatoid Arthritis that prompted me to become more aware in caring for my health. My anxiety issues and panic attacks, which worsened after my cardiac issues, forced my crippled hand to grab on and climb out of that willful ignorance. Due to the RA and my heart surgeries, I was a bit behind on achieving self-sufficiency in adulthood. I needed to obtain an education, a job, move out, succeed. But after nearly dying and undergoing two open heart surgeries on top of the RA, my capacity for coping with anything was shattered. I thought the sky would fall on me at any moment, over and over again. Even if my joints were aching due to cold or rainy weather, the agony of my anxieties and panic level were far more excruciating for me. But I couldn’t let myself become too afraid to step outside. I couldn’t let the anxiety strangle my will to live, especially after nearly dying. I didn’t want to lose all that I had gained from surviving the odds. I discovered that information could light up my world, leading to empowerment over my health.
With chronic disease, you want to understand what these symptoms mean, why it’s happening, how the disease operates, and what options are available to bring and maintain relief. So the desire to understand what’s happening, why these feelings are creating havoc, how they trigger, and how to focus and feel good despite being overwhelmed was all too familiar. It became necessary to always look into what options can help me be better, which specialists are available to help me improve my condition, what therapies and medications are helpful, and what might I do on my own effort to bridge the gap. Doctors can only do so much, especially when they’re looking from outside your experience. But we’re the ones sitting in their office, stuck in our fear and frozen by our disease. It all comes down to us as patients to speak up and ask “what if?” and “why not?”. We deserve to empower ourselves as patients, so that we can live despite our lingering disease.