A messy pile of unfinished puzzle pieces.

Trying to Understanding My RA

I’m debating whether I even want to delve into this topic because I don’t know if it is possible to understand this disease.

Rheumatoid arthritis (RA) is so unpredictable that even a person with multiple PhDs, a medical degree, and 50 Masters cannot understand it. Why is rheumatoid disease the way it is?

Why doesn’t it act like the flu? We know the symptoms, we know what medications to use, we know the side effects of those medications and how they work in the body. So, why can’t we control this autoimmune condition?

I thought managing RA would be a cinch

A long time ago, when I first embarked on this life-altering journey, I thought managing my RA would be a cinch. After all, I had the best doctor (still do), I had access to the right medications, I had generally mild symptoms and I caught the disease early. Isn’t that the formula for success, said my overanalytical brain?

I could not comprehend that even though the variables were just right, I couldn’t manage my RA. The experiment must have gone wrong somewhere. I tried to find the error: different medications, a variety of anti-inflammatory diets, and who knows how many lifestyle changes. Nothing worked.

Eventually, we found a combination that sort of managed my symptoms at least, enough that I could live a relatively happy existence. Did I find it? The perfect equation? Somewhat effective medications + a lot of sleep + monitoring my activity levels = a manageable life?

Symptoms and treatment response vary

Nope. It was too easy. RA was way more nuanced than that. It was not just the broader disease management but the everyday nitty-gritty. My symptoms and capabilities changed from day-to-day and it was expected (by the world) that I manage them.

But once again, it was not quite that simple. The same exact symptom could affect me in a number of ways. Why was it that one day, my fatigue was manageable with a little extra sleep and a dosage bump of prednisone? But, the next week, I was immune to both and felt drowsy beyond recall?

Why was it that one week, my methotrexate (MTX) made me feel alive and pain-free so I could do my work and chores and have a little extra leftover for the things I loved while the next week, the same dose of MTX caused me to vomit and stay in bed for almost 24 hours? That doesn't sound quite right.

Many factors to consider

Why is RA such a rollercoaster and why is it so difficult to understand? Have symptoms, treat symptoms, manage symptoms. It sounds easy as pie. Actually, it sounds even easier since there is no baking involved.

But, that's not quite all, is it? Symptom X on Day 5 means taking Medication G for Y number of days for an Outcome of Purple Unicorns Dancing Over My Head. Substitute any variable for any symptom or medication. There are an infinite amount of possibilities.

Maybe there is no perfect formula

Why is RA so complicated? Maybe there is nothing for me to “understand”. Everybody is different and everybody has a different immune system that reacts differently to the different medications. RA is a full-body sport that can affect every cell, each of which has its own tolerances.

Maybe there is no perfect formula and we just take every situation as it comes and we try to manage the disease that way.

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