Something many people don't know is that I’ve dealt with autoimmune conditions pretty much since birth.

The good news is that I don’t know anything different — it’s become ingrained into who I am, just as much as I identify with having blue eyes and blonde — errr — brown hair. The bad news is, well, autoimmune.

At the age of two, I was diagnosed with juvenile rheumatoid arthritis (JRA) — a debilitating disease for a little child who barely just learned how to walk. After my family noticed me crawling around dragging my inflamed knee behind me, they knew something was wrong. According to WebMD, JRA affects 50,000 adolescents in the United States under the age of 16. So not rare, but definitely not as common as one would think given the prevalence of autoimmune conditions today.

There’s lot of conflicting information out there as to whether autoimmune conditions are genetic, or whether environmental triggers, such as pollution and diet, are more directly correlated. But being diagnosed at the age of two (hardly enough time for my environmental conditions to wreak havoc on my immune system), leaves me scratching my head. For me, is it really all genetics?

The New Normal

Like most kids with some form of uncommon (and unfortunate) condition, I got along just fine. I went from being in a wheelchair at the age of four, to full leg casts and choking down six chalky baby aspirin at a time (because back then, I couldn't swallow pills like the adults did; I had to chew), to having most of my childhood memories filled with being in hospital waiting rooms… always waiting for something: from blood work and coordinating financials (my mom was a single mom and could hardly afford all my treatments; we’re so thankful for what was called Children’s Medical Services back in the late 80s), to physical therapy, eye exams and gold injections.

But with all the doctors’ visits and good behavior came reward. I got an obligatory “I feel so sorry for you, honey” trip to Toys R Us with nearly every visit — my grandmother always thought I was so brave and took me for a special treat as a way to make us all feel better.

But out of the fog of my younger years and once I grew into the condition, things got better. We found the proper medicines, my condition improved, and I spent time going in and out of remission. Even though I was in a wheelchair at a young age, I went on to play soccer like the normal kids in fifth grade, to becoming a JV cheerleader in high school — I didn't let anything hold me back. I had to make up for lost time. And, quite honestly, I liked blending in among the “normal” healthy kids. It was good to not feel different for once.

And I wanted it so bad. I remember every time I had to jump for those toe-touches in cheerleading practice, it hurt my knee every time I landed, but what did I care? I was living the dream, doing what I wanted to do — what I set out to do —  and blending in better than ever.

Feeling in Control

Fast forward to college, and I became a gym rat. Yep, obsessed. I was at the gym five days a week — determined to run, lift weights and do whatever it took to feel strong and in control of my body. And, looking back I'm thankful for this time that I had: Committing to doing something that was hard.

But maybe it all stems from that feeling of control — my body always felt like it was something way out of my control. And at the gym, I owned it. I told it what to do. I was the captain of my ship. And I fell in love with it. This began a long love affair with fitness, and I was determined to pursue it regardless of my condition.

From One Thing to the Next

Since I had been dealing with JRA from a young age, I was used to it, didn’t think much of it, just carried on and tried to make the most of the cards I was dealt… dealing with the roller coaster from remission to flare that comes with having an inflammatory condition.

But about five years ago, during a routine trip to my rheumatologist for a checkup and to get blood work done, he delivered some bad news. I had new markers in my blood that indicated that the RA had moved out, and systemic lupus erythematosus (SLE) had moved in.

Shocked, I didn’t want to believe it. Of course he was wrong. There’s no way that the condition I had since I was two was now something else. But, then again, something had not been feeling quite right — I was tired all the time, literally wanting to fall asleep at my desk at work, and didn’t understand it. I wanted a second opinion.

But, turns out he was right; I just didn’t want to hear it. The RA that I had always known had somehow left the building, and it’s ugly cousin — that, to me, seemed way more scary than RA — had taken its place.

This meant new medicines, new treatment, a new way of looking at myself. And new setbacks. While RA had always mainly attacked my right knee, causing muscular atrophy in my right leg literally my whole life, lupus had decided to attack my left knee. Go figure… if one chicken leg wasn’t bad, now I’d have two. (I’ve always reluctantly referred to my “skinny” right leg as a chicken leg… figured giving it a cute name would mask how I really felt about it.)

But with my body now pumped full of prednisone, methotrexate and hydroxychloroquine, I felt the side effects, but the lupus slowly went into remission. And at that point, I was thinking it wasn't so bad. I was able to do what I always wanted to do — be active and get into shape despite the setback.

I was lucky enough to reach a point of brief remission for about two years, between 2015-2016. And I felt great. I threw myself into diet and exercise, took care of my body and pushed it to new levels. I saw the atrophy in my right leg nearly disappear through new muscle growth and dedication to rid my chicken leg from my life once and for all. And during that time, I felt amazing. I felt as though not one thing was wrong with my immune system — light symptoms, less harmful medications, no feeling sorry for myself.

Remission Never Lasts

As anyone who has or knows someone who has an autoimmune condition, remission never lasts. The lupus slowly snuck back in, and I wasn’t wanting to acknowledge its presence. But, despite my kicking and screaming, I listened to doctor’s orders and got back on the meds I hated so much.

Sick of the headaches, my hair falling out and knowing it was tearing up my liver, I took myself off methotrexate in February 2018. Just to see what happened and how I’d do without it. I kept taking prednisone and hydroxychloroquine, but hated the methotrexate. I thought I was doing fine, until I was calling my doctor’s office, like clockwork, every two months because I was in so much pain.

Fluids kept building up in my left knee because of the active lupus and inflammation in my body. Every time, a brief sonogram on my knee revealed a reservoir of fluids that had been causing all the pain. If fluid is left in your joints, it can cause irreversible damage, so it would have to come out. Each drain was followed by a steroid shot to the center of my joint, and within 24 hours, I’d feel like a million bucks. But, of course, two months would go by, and I’d be right in the same spot.

My doctor finally had a Coming to Jesus moment with me and said that I can no longer run from the active lupus. He’d be putting me on Benlysta. I start it in the next month.

So, after running from it for a bit — and frankly being in denial about my condition — I'm facing it head on this fall. I’m determined to get it under control and feel like my body is mine again. Not Lupus’.

On the journey to get there, I'll be loading myself up on medications (I've already started the methotrexate, and the headaches have returned), changing bad habits, increasing my workout regime (flare or not, I'm getting my sweat on), examining my diet and uncovering which foods trigger inflammation and gut issues, and cutting out anything that doesn’t overall contribute to my state of health.

Autoimmune Doesn’t Control Me

We’re the ones in control of how we treat our bodies, what we put into them, whether we give ourselves time to rest and recover. Just when you have an autoimmune condition, you can’t afford to neglect yourself for too long. With this change in insight, I’m committed. And knowing my headstrong self, I think I can actually put this lupus back into remission pretty quickly. I’m going to give it three months once all the new medicines have kicked in.

Beyond RA and lupus, there are so many autoimmune conditions out there. According to National Center for Biotechnology Information, women get autoimmune diseases at a rate of about two to one compared to men — 6.4 percent of women vs. 2.7 percent of men. So, ladies, we’ve been blessed with being the main recipients of these conditions. But I think that’s because we’re stronger — we can push through. Still raise kids, take care of our families, be a good wife and daughter/sister/friend, go to work every day, clean our house, and manage to live life and take care of ourselves through it all.

Do you have an autoimmune condition or know someone who does? Chances are you do, because it’s estimated that approximately 50 million Americans, or one in five people, suffer from autoimmune disease.

The key with managing your health — and your mental health — is to not let it run your life. Acknowledge it, welcome it along for the ride, and do everything you can to kick it out of the passenger seat. While I’ve oftentimes viewed my condition as a curse, it’s actually quite the opposite. It’s made me stronger, more resilient, work harder for what I want, and really kept things in perspective.

Without it, I’m not sure I’d be such a committed practitioner of self-care, self-love and grateful for the body I'm in regardless of all of its differences.