RA isn't just about inflammation and your joints. RA is a systemic disease, also affecting muscles, organs and other systems in your body. The first time I learned about that was when I was 12 when it tried to kill me by attacking my heart and liver.
The reason there has historically been a mortality gap between people with RA and those without has a lot to do with the impact of the disease on your heart. So since I'm now officially middle-aged, my rheumatologist and I thought it would be a good idea to start keeping an eye on those potential systemic effects. Which is a long-winded way of saying that my family doctor arranged for some blood tests, including my CRP (an inflammation marker) and my cholesterol. Last Tuesday I went to get my shot and inquire about the results of the blood tests while I was there. She looks through them and I ask how my CRP is.
"Hmm…” She says, sounding a bit surprised.
"What is it?" I ask.
"What's it supposed to be?" I ask, feeling like I ought to know, what with being the Community Leader for RAHealthCentral, but I've never paid much attention to blood tests and not just because I'm from an era where you weren’t told your blood test results.
And then I make a tortured joke about how based on certain criteria out there, I guess that means I'm not in remission after all.
I spent some time that day and the next freaking out a bit. Which doesn't look any different than my normal self because I was too freaked out to talk about it. How can all my joints be okay and my inflammation marker be that high? Does this mean I have a crapload of systemic inflammation going on? Does that mean I’ll have to start dealing with my disease again?
Does this mean I’ll have to start dealing with my disease again??
Somewhere in the middle of the madness, I decide to try not to freak out until I’ve talked to my rheumatologist. This, however, does not help the anxiety. I once had a button that said "I'm not tense. I'm terribly, terribly alert." This perfectly describes my state of mind last week.
Living with RA is like walking a tight rope over an abyss filled with monsters. You have move carefully and not look down, or the fear will make you fall.
About 24 hours after I had seen my family doctor I remember that I normally very deliberately don’t know too much about my RA-related blood tests. Instead, I rely on how I feel and what my joints look like. I remind myself that since I feel fine and there's no inflammation in my joints, the impact of any potential inflammation in my body is probably not different that particular day than it was before I knew what my CRP was. I decide to stop fretting until my rheumatologist can weigh in on the matter. This time, I'm somewhat more successful.
Thursday, I go to see my wonderful rheumatologist and we chat about this, that and the other thing and then I mention the CRP and how it's a lot higher than it should be.
Her first question to me is about the state of my health when I went to see the vampire in the lab - did I have an infection of some sort? I mentioned that I have been battling a sinus infection (because thanks to the side effects of Humira, I am almost always beating back a sinus infection). She looks at my hemoglobin, which has been unnerving low for most of my life, but thanks to Biologics is now normal and tells me not to worry. She goes on to say that this is why tests like the CRP and ESR (another inflammation marker) are no good at telling you much about RA, because if you have a sinus infection or bladder infection or something else is going on in your body, they'll go up. You have to balance that level against hemoglobin and how the joints present. If hemoglobin is normal and the joints are looking okay, then the inflammation marker is up for a reason unrelated to RA. She also remarks that my sugar is perfect and my cholesterol excellent, so get a grip and she'll see me in six months.
And this is why I don’t pay too much attention to the blood tests. Because they will only freak you out.
These days I’m freaking out (but just a little, as instructed) with Laurie who has a realreason for it. Please pop on over and give her some support.