When Down Means Up

Every three months I get to have my blood tested in preparation for my quarterly appointment with my rheumatologist on the state of lupus in my body. Thankfully I have great veins. They just pop out and make fat targets that are hard to miss and nurses rarely do. And I bleed so fast that nurse – patient conversations are typically short, but never boring.

For example, we have discussed weight loss. Not my idea, trust me. I am not that stupid even under the influence of mind-altering medication. Rather blame the nurse who after noting my weight was down sighed that she wished it was that easy for her. “It’s the drugs,” I said. “The anti-depressants.” I was then left somewhat speechless when she responded: “Mine just make me fat.” Where does one go from there? A moment passed. And then another. Despite the fact that I was bleeding into one collection tube after another, some smidgen of pastoral care kicked in; empathy of a sort since we had just declared ourselves part of the same family. “Weight gain, that’s my greatest fear,” I said. Thinking that or major organ failure. If a person has a needle in your arm, go with the flow.

Of course I will be going on an indefinite melodrama sabbatical since my blood tests reveal numbers going down across the board. The presence of the disease active in my body appears to be diminishing. The medication isn’t supposed to do that, so as to the “why,” it is anyone’s guess. Lupus flares up and goes quiet; rinse , wash, repeat; with the blood test numbers often anticipating which direction it is leaning. Has my self-care contributed to its apparent desire to slumber? A bit more exercise? The yoga? The care I now take out in the sun? The daily regimen of anti-anxiety and anti-depression meds finally combatting the stress that has been slowly killing me for years? Is it my kitten, which follows me around everywhere, takes naps on my chest and purrs a lot? My giving in to my wife’s healthier eating suggestions, including salmon and something called “super greens?” Those bottles of vitamin supplements? My cathartic discovery and watching of the TV show “Arrow” on Netflix giving me the heart of a survivor with a purpose? All that prayer people have been offering in my direction? As the commercial from my childhood declared: you roll your dice and move your mice. The numbers are going down and I am feeling up. Less fatigue and bed-ridden-ness. Fewer headaches and body aches and my thumb hasn’t looked so un-swollen since my last Easter.

And I am not taking it for granted.

I have moved back into the church office after primarily working out of a home office for a dozen years. This is partially because I am now, after budget adjustments, the de-facto office administrator, but more to the point I am reclaiming my home life. Establishing healthier boundaries between work and not work. It used to be I would work all the time at home, carving out a little time here and there for myself and my family. My home computer was my work computer and my desk was one enormous inbox. And since home was the office I never really left work. I am attempting to make home, home again, a great re-programming of my daily life. If you receive an email from me after work hours from now on chances are it is my kitten, which has become obsessed with trying out my computer. Though he is much better at texting at this point. I am also being careful. Resting more. Walking more. Eating better. Avoiding stress. Avoiding becoming over-committed. Delegating more. Laughing more. Spending more time out in the wildness of the Everglades, camera in hand, and just entering the peace of the moment.

Next week I could be flat on my back, head crushed in pain, staring blankly at my smartphone and wondering why all my friends are so much smarter than me at Words with Friends, me unable to focus. Or maybe never again. Who the hell knows? We are all called to be faithful, and sometimes foolish, but never stupid. Working oneself to death, even for the sake of the church, is really an act of ego and selfishness, even if we tell ourselves it is otherwise.

We are called to live and set an example of a better way. DSC_0056

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