Wednesday, September 19, 2012

It's been a while...

Yeah, so it's been a while since I last updated this blasted thing. In 2010 I'd hoped that by 2012, I'd be writing about how I'd kicked Lyme's ass and was a super ninja warrior. Or something.

But I'm not. Since my last post, the Rocephin and/or my family history of gall stones led to the removal of my gall bladder. In May of 2010, I was probably the best I'd been since this whole thing started. I was up to maybe 45% of "normal" energy on a good day. Cognition was good. But then there was surgery and I stopped Rocephin for a few months. And when I went back on the Rocephin, it just didn't work anymore. Eventually I had the PICC removed.

And slowly, very slowly, I started to slide backward. I've tried a number of treatments--drugs, herbs, detoxing--and in June of this year my doc suggested that I could try IV doxycycline. Which is more complicated than IV Rocephin and looks to be fairly expensive. It'd also be difficult for me to do in the summer, since doxy makes me very sensitive to the sun (and I already burn very easily).

At that point, I was pulse dosing my antibiotics--two weeks on, two weeks off. I felt so much better on the "off" weeks. Probably because I wasn't dealing with side effects plus die off. Still, I just got to a point where I couldn't do the drugs anymore. I needed a break. So I'm on a drug holiday, and not the fun kind in Amsterdam. I've been off antibiotics since June.

June and July were pretty great. I spent July in Oklahoma with family and friends, and despite the raging heat, I felt pretty good. Just being there, in the company of a dear friend, in contact with the land that has been my family's home for over a hundred years, land that is twisted into my DNA, land that I am connected to on a very primal level, well, all this was good. It was healing in itself. It fed my soul, which has kind of been wasting away.

Now it's September. In a few days I turn 34. In a couple of months, I'll mark the five-year anniversary of this illness. Physically, I'm not doing well. I'm back down at around 20%. Cognition has slipped a bit, but I'm still at 75%, which isn't terrible. I'm in a lot of pain. Emotionally and spiritually, I'm kind of falling apart.

I need to figure out what to do next. I can always just wait and decide later. I can go ahead with another drug or another treatment plan altogether. Or I can just stop and make peace with the idea that this is it. That this is my life now and for as long a future as I can picture. And then, with that acceptance, go ahead and figure out what I can and can't do, where my limits are, and try to make a life here, in this moment, without all the striving and struggling and drugs and side effects. I know it kind of sounds like quitting, but at some point the treatment is more damaging than the disease.

And I don't know where my life is headed. I won't go into specifics, not on the Internet, where anyone can read this. But I will just say that might lose or maybe am losing or have already lost the structure and security and...crap, a lot of shit that I've built my life around. And I'm older and lonely and so fucking tired. I feel like there's little I can rely on, and my future is a big blank dark space.

So there's the update. No awesome progress report. No happy ending.