Man navigating a video game-like path to collect medication and avoid flares

Leveling Up With RA

Leveling up. It’s for video games, sure, but for those of us who suffer from rheumatoid arthritis, we do it every single day. "What could you possibly mean by that?" I hear you ask, and I’m here to explain it in my unique and witty yet poignant style. I know you are excited, and I am, too! Let’s see where this goes — I have high hopes.

Living with an ankle fixation device

I have lived with rheumatoid arthritis for over 3 decades, and I realized something the other day. I was trying to distract myself with video games from the agony and, frankly, excruciating annoyance of having this awful fixator on my right ankle, with its seven metal rods going in one side and out the other. The device is shockingly low-tech, and every day I say to myself, "This is the best solution they’ve come up with?"

It rattles all the time like Jacob Marley’s chains from A Christmas Carol, it bangs into doorjambs and table legs like a drunken Roomba, and it rings my bell EVERY. SINGLE. TIME. It even breaks now and again, and instead of pulling out gauze and medical tape, my brother pulls out his toolbox — the same one he uses to fix pool equipment for the business he owns. Yup, with a crescent wrench and a locking washer, not Neosporin and a Band-Aid. It’s absurd, it’s painful, and I want it gone, but it did result in an epiphany, as I said. Those of us living with chronic illness just keep on leveling up each time something happens to us, just like a video game.

What does it mean to 'level up'?

What do I mean by that, exactly? Well, when you are first diagnosed with RA or whatever chronic illness you have, it is a confusing and overwhelming time until you find a routine that works. Then, you live that routine until you hit your first real test — be it a joint replacement or pneumonia or a serious fall, whatever the case may be, you face that tragedy. You do your best to deal with it and then you move on.

The thing is, if that same thing happens again later, you probably don’t get as scared or as upset, and you know pretty much what to expect. Well, guess what — a much more succinct way to say that is that you’ve leveled up!

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Leveling up can also have a downside

That’s what we do, folks; we live with our chronic illness and we level up. Each time we face a trial, something we have not dealt with before, we overcome it, we put it into our basket of experiences, and we take the knowledge and the mental and physical strength we gained and put it away until the next serious issue. By the time you have lived with RA for 10 or 20 years, you have leveled up so high that not much scares you. Seriously, when I got diagnosed with cancer, I think I literally just went, "Oh, ok, so what do we do? Also, when is dinner coming?" After 30 years of life-and-death situations, I just don’t get fazed very easily anymore, and, well... yes, that’s not always a good thing.

Sure, it is beneficial to not freak out during a crisis and to be tough enough to react and think critically when you are in pain or in distress, but leveling up also has a drawback. It sometimes can make us ignore or downplay things that maybe we... shouldn’t... do that with... ever. For example, when I got the first infection in my right foot where the pins enter my leg, I said to myself, "It hurts, but I’ll just deal with it, because getting in touch with the doctor is a hassle and I'm basically an amateur doctor anyway.”

And that’s what I did — Discount Dr. Dan. I just dealt with it... that is, until the visiting nurse came by a few days later and said, quote, "Dear God, you are leaking more pus than a Dr. Pimple Popper video. Are you on antibiotics?"

Of course, I played it down as if it was nothing — a trifle, really, a blip — but the truth is it could have spread to my other implants and devices and been a huge issue, if not life-threatening! Thinking you know better than the doctors can be dangerous, but for the most part, leveling up keeps us sane.

I wear my toughness as a badge of honor

After 30-plus years of RA and more comorbidities than I can count, I have likely leveled up to the maximum level possible for a human being who is also still alive. In fact, the other day, the surgeon who installed the pins in my leg told me I was one of very few patients who doesn’t complain about the pain, to which I said, "I’ve had pain for 30 years — we are old frenemies. Besides, what is complaining going to do?"

He laughed, but it was pretty much true. I’ve leveled up to the point where minor aches and pains don’t even make me flinch. You need to come at me with at least a 7 on that idiotic pain scale to even get me out of bed. Or keep me in bed, as the case may be. Mentally? It’s the same. I rarely get anxious or worried because I’ve literally stared death in the face, and you think charging me an overdraft fee is going to move the needle? Try again, Chase Bank.

Living with chronic illness doesn’t have many upsides, but leveling up seems to be one of the few, albeit with one slight downside. In fact, I wear my toughness as a badge of honor, and the fact that I know exactly what I am made of is a point of pride. How many people can say that they leveled up to the max? Talk soon!

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