Today I have an appointment with a rheumatologist to discuss the joint and muscle pain I’ve been having. My GI suspects I have rheumatoid arthritis, in addition to Crohn’s. I may have confirmation today, because Dr. D sent me for blood tests that may give some sort of confirmation. In many ways, just like when I was first diagnosed with Crohn’s, the promise of a diagnosis is bittersweet. I’d rather not have it. Really really really rather not. And yet, I find myself hoping they say to me, yes, you have RA…because at least with a diagnosis there’s hope of treatment. Because when it comes down to it, I have the pain. It’s there. It’s chronic. It goes away, but it always comes back. And just because a doctor says, no you don’t have RA – that doesn’t mean that instantly the pain will just go away.
“Hey, body! You don’t have RA!”
“Oh, ok, whoops my bad. I’ll stop hurting now.”
I just want to have hope, you know? I want to feel like there’s an end to this. Or a way to manage it. People say this a lot: pain management. That’s what I have to hold on to. Not “end of pain” or “cure.” Just pain management. Taking the edge off. Making it manageable. Living, despite it. Sounds shitty, to be frank.
But then, is that really what it means? What if I get on a good medication, like the Remicade has been, and I’m totally pain-free for years? THAT is where the hope is. That’s where the light is for me. I can find something that can make me feel very normal for a very long time. That may be all I can have, but for now I’m okay with that.
Coincidentally, the NY Times just put out their Patient Voices on RA. You can see that and the entire series (including one for Crohn’s) here: http://www.nytimes.com/interactive/2009/09/10/health/Patient_Voices.html?ref=health It’s an amazing series. But to be honest, I didn’t watch the one for RA. Not yet. Somehow, I’m just not ready. Just…not until I know.