Friday, January 11, 2019

Health update: loops and spirals

A few days ago, our cat Abby "discovered" one of the toys our cats got for Christmas, thanks to my Mom: a little plastic spiral, simple as can be but apparently Very! Exciting! on a grey winter afternoon. She batted at it, bit it, pushed it and ran after it, jumped over it, and generally made such a commotion that our other cats became curious and started playing with it, too. A good time was had by all! It was funny that the toy had been sitting around for two weeks without the cats noticing it, apparently, and then suddenly it was a Fabulous Thing.

Abby and her new toy. Thanks, Busia!

Around that same time, I got some test results, long awaited, from the Cleveland Clinic: the more accurate (and expensive) bloodwork than the test I had done before showed that I have four tick-borne diseases, including Lyme, and the CC lab also showed that I have four "co-infections" as well. The Lyme spirochetes are floating around in my system, burrowing their spirals into my organs, my brain, my white blood cells and red blood cells, making themselves at home in my body.

Lyme spirochetes, Borrelia burgdorferi
Content Providers(s): CDC [Public domain], via Wikimedia Commons

I feel validated--in part because I now have labels that I can produce when I tell medical professionals and insurance workers that I am sick and exhausted, that I feel terrible, that I am disabled, that my body struggles with the everyday tasks of being a grown-up human (cooking, showering, working, thinking). I have diagnoses to point to rather than being a medical mystery.

I also feel like my immune system is kind of badass; after all, it took EIGHT infections to take me down! And that's on top of thyroid problems, an autoimmune disease or two, and Epstein-Barr! My body worked really hard for a really long time to operate despite these problems, and it did a damn good job--I have (had) a career, I ran and rode horses and did yoga, I wrote things, I traveled, I learned things, I raised a kid with my partner. My body is amazing!

At the same time, I am feeling a certain level of dread. It's Lyme, after all, which is "controversial" in its diagnosis (one reason it took 3 years for someone to order the more accurate blood test, which insurance does not cover), and in its treatment. (Here's an article that details some of the weirdness of having Lyme. I can also tell you that the closest "Lyme-literate" doctor--someone who has a clue about the latest research, which is changing swiftly--who takes our insurance is a 1.5-hour drive from here. The one closer to us, in Columbus, doesn't take insurance; the first office visit costs about $800, and that's without any treatment or testing.)

It's highly likely--pretty much certain, actually--that my trajectory from ill to well (or at least better) will look nothing like a straight line. I will most likely need to try something, see if it works, try something else, try a combination of things, try again, go into remission, experience a flare-up... Loops and loops of therapies, care-taking, ups and downs, good days and bad days.

I have long loved the image and metaphor of the spiral--coming back around to the point you saw before, but from a new perspective, the past carrying an echo of the present which in turn echoes into the future, like the seasons each year, or like rereading a favorite book. Looping back to a place you've been before, but with new experiences and new knowledge. Dancing a spiral dance and looking into the faces of your beloved friends, winding and unwinding connection and then winding it again.

Fiery spiral
from the blog Ideas on Fire, which looks pretty great...


So today I am wondering how to take in and process this news about the spirals in my body that I will try to expel, and about how to proceed when I can't see around the bend. About how to hope for better times, if not resolution. About how there's no way to go but forward.

May you find peace today,
Karen