On the Other Side of Disease

The Real Rheumatoid Disease

Fact: Remission is Rare. Daily pain is Not.

(This post is part of a blog carnival in recognition of Rheumatoid Awareness Day.)

Three and a half years ago, I was diagnosed with Rheumatoid Disease. I was lucky, though. Very, extremely, rarely lucky. From July 2012 until March 2013, I was in miserable pain, but that was a blink of an eye in time compared to what it could have been. Once I rounded the corner into the second trimester of my second pregnancy, my symptoms alleviated, and since that time, I've been mostly symptom-free. In November 2013, my doctor officially said the "R" word: Remission. My miracle baby #2 was a blessing not only to my life but also to my body - and not a day - not one freakin' day - goes by when I don't think about how lucky I am that I'm on this side of the disease now.

I think about how lucky I am - and I think about how that could change any minute. As I draw closer to the birth of our third baby, I am terrified that the prison of a body I was caged in when my first child turned one will return after I deliver this child in a couple short weeks. What if I've "undone" remission? What if hormones or something about pregnancy and post-partum healing resets my body to a state of disease after 3 years of increased mobility, painless joints, freedom from stiffness, full range of motion, and never feeling flulike? What if this lucky break was just that - a break? What if my ability to squat, to kneel, to jump, to open a jar, to lift my babies - what if it's all taken away again?

This Tuesday, February 2nd, is the 4th annual Rheumatoid Awareness Day. I can recall the very first one - the year I was on the verge of remission and had no idea that the pain, anguish, and misery was coming to a closer for me so soon. Those days were dark - not knowing if I'd ever run and play with my toddler how I wanted to, not knowing if I'd have a pain-free body again, not knowing how much longer I'd have to deal with the isolating feeling of the invisible illness I was having to manage on the inside all alone. I wish I had known then that relief was coming, but all I really care about is that it did come! And thank God it did. But, we are so far from a cure for this disease. What made me lucky? Why did a pregnancy help me so much? Why can't we tap into that and find a cure for everyone? How can I be sure it won't come back again?

Remission. A word I worried I'd never hear once I began my heavy research about RA and rheumatoid diseases. A word I longed to hear and - thankfully - got to - unlike so many invisible sufferers. Being on this side of the the disease is a relief, a blessing - one I don't take for granted! But, without more research and a cure for this puzzling and misunderstood disease, this word is one I'm terrified won't always describe me. Even though I'm in remission and fully enjoying the benefits of being on this side of my disease, in a way, it still has a hold on me. I live in both gratitude and fear. I appreciate the time I've had of being in remission, and I pray that it will continue... but that comes with the understanding that it may not, I may be back on the other side one day, and that haunts me. The truth is that no matter how long I'm in remission, I'm never truly free from the disease. I'm never really unaffected by the threat of disease return.

This coming Tuesday, as we await the news of the groundhog (or in my husband's case, watch Groundhog Day again and again!), take some time to make yourself aware of Rheumatoid Disease, of how it might feel to have this disease, of how we need to find a cure for this disease, of what a cure would mean to so many people, or of how lucky you are that you don't have it. I know I will!