I’ve been a little blog- and twitter-avoidant for the past week or so. Partly because I’ve been exhausted in between being busy and being sick, but also because, as I mentioned in my last post, I had reason to believe that one of these chronic illnesses I carry around with me had decided to attack my kidneys. And it didn’t see particularly useful to rehash my anxiety over and over again on here, even if that was what was going on in my head. It took almost a week for me to actually get in and re-do tests (but not before I had waited and then left my GP’s medical practice nearly in tears– on two separate occasions) and then I had to wait for the results. The good news is that my kidneys are not leaking protein, so lupus nephritis can be ruled out. But my creatinine is still elevated slightly. While leaves us with… vasculitis? (It’s certainly not all that “muscle-building” exercise I’ve been doing, since I haven’t seen the inside of a gym in months.) The jury is still out, but at least I have been able to quiet the catastrophizing voices in my head. Well, turned them down, anyway.
What this last round of anxiety has taught me is that despite being ill, I’m still pretty vain. Which isn’t necessarily an attractive attribute, but it tells me that I’m still invested in my whole self and how I appear in the world. One of my first thoughts was “Oh god, does this mean I’ll have to go on high-dose prednisone?!?” About a year ago I finally lost the last of the (30+ lbs of) weight I gained the last time I had an adventure like that and I have no desire to fight that battle again.
I started this post as an entry to the current Patients for Moment Blog Carnival, but I realize that I’m not sure I have any wisdom to add. Because I’m not very good at accepting new diagnoses (or calmly addressing the questions brought up by new symptoms). I try to tell myself that I can’t always control my illness, I can only control my reactions to it (a variation on my self-help strategy for dealing with frustrating people) but since my illness is a part of me, not a person or thing outside of me, that just ends up making me feel kind of confused and incoherent. On the other hand, I suppose while my symptoms are a part of me, my diagnosis is outside of me. My diagnosis says more about a consensus within the medical field than it says anything about me and my individual experience. A small distinction, but maybe an important one. Just because I have an unusual lab result doesn’t automatically condemn me to a life of chronic kidney disease. And just because my symptoms are flaring now doesn’t mean I’ll feel this way for the rest of my life. It could get worse, or it could get better. I think about my grandmother dealing with her diagnoses thirty-plus years ago—how no one offered her anything except Mobic and prednisone and cortisone shots because there just wasn’t much else to do. At least I have options, whatever the diagnosis might be.