No one said this was going to be easy and most days that’s just fine with me. I’m not looking for easy; I’m looking for doable.
Being diagnosed with a chronic disease changes your life in many ways. You bounce between relief that you know what’s wrong with you and horror that you know what’s wrong with you. Not to mention you are inundated with information: about what you should do, what you should not do, when you should do it, when you should not do it, how you should do it, how you should not do it, and the new order of things goes on.
After a time, if you’re fortunate, you stabilize and that’s when it hits you that you’re the passive participant in your own life. You wait for the specialist to tell you the type and amount of medication to manage inflammation, fatigue and pain. You wait for the technician to tell you when they will draw blood. You wait for the receptionist to tell you when your next appointment will be. And, you wait for someone else to tell you the results, consequences, and next steps of every test you take.
If you look at lab results as a sort of report card on how your disease is being managed, you get a sense of how impatient a person can feel waiting to hear about those results. And, if you don’t hear about the results unless there is something terribly wrong, well, I don’t know about you, but I like to know before I fail that something is going in that direction. That’s why I’m getting my lab results online from now on.
You could ask: But what if you can’t do anything about the results? Good question.
I mentioned in my last post about watching erythrocyte sedimentation rate (ESR) as it indicates inflammation level and is one piece of information that my rheumatologist uses to decide if my medication increases or changes. For someone with RA, it isn’t unusual to have a slightly higher than normal ESR. Anyone living with inflammation can tell you if their disease is active just by being conscious.
Seeing an increasing trend in ESR is useful to me for two reasons: the pain is real and I need to address it, and it gets me prepared for a conversation with my rheumatologist.
When I say the pain is real I mean just that, which could seem ludicrous to some people, but there it is. The problem is that when you’re living with chronic pain, all too often you don’t know when it’s too much until you find yourself crying in the corner. I see my ESR increasing over a couple months and I will take the discretionary anti-inflammatory medication more readily as opposed to toughing it out.
Every time you have a conversation with your physician, you need to be your own staunchest advocate. By this I mean, you simply cannot agree to take more of a medication because you are told to, nor can you agree to taking a biologic without doing adequate due diligence. Remember, this is your life, not someone else’s. By all means, listen to all the good advice of these experts, but don’t ever forget: you are the driver.
All this brings me back to getting access to my lab test results … and it isn’t nearly enough, but it’s something that helps me manage and that has to be good enough reason to do it.
There’s a joke I like to tell that illustrates the difference between involvement and commitment. It’s about the roles that the chicken and pig play in making bacon and eggs for breakfast. The chicken is involved, but the pig is committed. I may be the pig, but no one is going to call me chicken.
You damn right it’s not easy, but this is my life, and I’m committed to living it with all the information that is mine.