Saw my rheumatologist Thursday and he says I have pleurisy, not pericarditis (which was what my PCP said). Chronic pleurisy, to be exact, because now that I know what to look for, we realize that I’ve actually had several stints of it. It was just so bad this time that it scared me and made me do something about it. Of course, it’s all Stew’s fault.
He’s used to me being super stubborn about medication, so didn’t push too hard when I steadfastly refused to do a course of prednisone. Oral steroids are the devil, as far as I’m concerned. Hangry times 1,000. Like Turbo PMS. I’ll take the pleurisy, thanks.
What’s weird, though, is that he acted like he’d never heard of those side effects before. He seemed legitimately surprised that I’d experienced mood changes and intense hunger, and that surprises me. Worried that I was imagining thngs, I googled it after I left his office and it’s common knowledge–listed on every drug/medical info site I visited. Someone on a forum describes themselves on prednisone as a “crabby little hungerball”, which is as perfect a description as I’ve ever seen.
This is one of the most annoying parts of dealing with the medical community so much, the disconnect between what they know and what you know. Sometimes you have to trust that you know something they might not, which can be difficult because we’re conditioned to defer to their authority. Lived experience shouldn’t be discounted, though.
Great example in this case: When I described my symptoms to my friend, I said it was my lung. When the pain got bad enough that I decided to see the doctor, I told my PCP’s office it felt like my lung. At the appointment, I said it was my lung. When I left the appointment with a diagnosis of pericarditis, I spoke with a friend as I drove home, still insisting it was my lung. (She’s had pleurisy, btw, and called it from jump.) By the next morning, though, I’d begun to convince myself that my PCP was right, that it must be pericarditis, because she said so. And what was it in the end? My lung. Rheumatologist saw no signs of pericarditis, it is textbook pleurisy.
I have had so many similar experiences both before my autoimmune diagnosis and since. So no steroids. I’m trusting what I know about my body. I’ll save those for when shit gets really real. I took them for my bout with gout (ha), and if you’ve ever had a ride on that pony, you understand exactly why I did. That’s the bar I’ve set.