Tuesday, October 28, 2014

Dancers and Demigods

Here's a link to my most recently published story. Many thanks to Phoebe Journal, Alex Henderson, and Ah-reum Han, who did a wonderful job editing!


Muse of dance and music

Thursday, October 23, 2014


It's been six months since my last blog post. A busy, happy six months that might possibly justify my neglect of this blog.

I've struggled so long with ups and downs of Lyme treatment, and it seems natural to keep the blog up when Lyme is more at the forefront of my life. When I'm feeling well I want to push Lyme to a corner of my brain so I can work on my short stories and find an agent for my memoir, not to mention dance, read, run, and bike up to the pool while I yak away with my buddy Emily (then swim for 45 minutes and take the long way home, yakking away again).

Dancing with my friend Estela in the Seattle Solstice Parade this June. (I'm on the right. Yes that is a band-aid on my leg from giving myself a heparin shot right before the parade!)

Then I got a gentle reminder that when I'm feeling strong and the universe is showering me with luck, I should remember my blog.

It came when I put a profile up on OkCupid. Yes it was time to start dating again! I'd been gearing up to date for a while, even taking some selfies when my hair was looking good because I knew I would need photos.... But I was mostly putting off online dating because the thought made me nervous. By early September, though, the time was ripe. I gathered my best photos and typed OkCupid into the search engine.

I've been sick for so long that I've racked up some experience dating while chronically ill. Not that I have any idea what I'm doing, or have a sure-fire strategy for explaining this confusing illness to potential boyfriends. But one thing I do know is to be upfront about it. There are plenty of guys out there who probably don't want to take on this added complication, and I'd rather not waste my time meeting them. So I mentioned Lyme disease once or twice in my online profile.

To my surprise, within 24 hours of putting myself "out there," I was fielding messages about Lyme disease. And I don't mean, "You're so beautiful and intelligent and I don't mind at all that you have an illness." I did in fact I did get that type of message, but these were not what flummoxed me. What threw me were messages asking me who my doctor was, what type of testing I'd had done, and specifically how I was treating Lyme.

Help! The separate worlds were colliding! I was just trying to maybe have coffee with someone single and attractive, and instead I was getting sucked back into the quicksand of the Western Blot and the Burnher Protocol? Would I ever escape Borrelia Burgdorferi, for even just a second?

And then I calmed down. It was only two guys. One was in the process of getting diagnosed and had randomly come across my profile, he said. The other seemed to have done a deliberate search for Lyme on OkCupid because, he figured people on dating websites were clearly doing better than so many people out there with Lyme. Pretty damn smart of bachelor # 2.

And then I remembered how starved people are for information about what works. And how few people who get better take the time to share their success strategies with others.

I remembered that on this blog, my posts on medicine get the most hits (no, the world at large is not so interested in my personal life or my humorous stories about friends, family, and pets). People are looking for information. I know that. I was there myself. Support groups can sometimes be great, and sometimes make you feel like someone just destroyed every map that was ever made. Certainly this is an illness with no good map.

So here's what I can share.

I am no longer trying to beat this illness into complete submission. At this point it doesn't seem realistic. I'm accepting with as much grace as possible that Borrelia Burgdorferi has a partial hold on my existence.

It's not so bad, compared to where I started. For years I spent all day in bed, often crawled on hands a knees to get to the bathroom, or on 'good days' walked one full block for exercise. Yes, my current relationship with Lyme is far better.

Currently, Lyme is still woven throughout my day. Scarcely an hour goes by that I don't think about it in some way or other. I count on dedicating ten hours each night to sleeping--although I'm not asleep the whole time, I need that much time getting ready for bed and in bed in order to sleep the eight or nine hours I need. I also take a couple short naps/meditation sessions during the day.

I have the luxury of pursuing my career from home and my house is a carefully controlled place, with no toxic chemicals, no mold, vacuumed to the hilt. (And somehow there's still dog hair flying around!)

As for Lyme-killing meds. YES. I am currently on a combination of anti-microbial herbs:

Pau D'Arco

My hero of a scientist, Dr. Eva Sapi, has done research on Samento and Banderol in combination and found them to be more effective than certain antibiotics, in certain Lyme scenarios. (I am paraphrasing one of my doctors here. Please don't take this as bona fide medical information--just trying to explain how I got to this combination of medicine.) My naturopath, Nesreen Medina, suggested including the Teasel, which made a huge difference for me in my allergy/congestion symptoms. We added the Pau D'Arco because I have a history of parasites from my time in Mexico. Neem, ditto. Also it seems to help with sleep.

Before I started these herbs, I was on very high doses of antibiotics, for years. I don't think the herbs alone would have been significantly effective to kill off Lyme. Not for me. But they are good at keeping it in check and helping me make slow, noticeable progress. (Less brain fatigue, longer runs and swims, etc.)

At any one time I'm on 5 out of the 6 of the herbs. This allows me to rotate, which is important because we know this bacteria is really good at resisting whatever you throw at it. So the rotation keeps beating it back from different angles.

I take these things before I go to bed. They are liquid drops and I have to count them out, which is annoying at the end of the day, but so be it! When I first switched to herbs, Dr. Marty Ross prescribed them to me twice a day. I tried taking the second dose before getting out of bed in the morning, or at lunch--meaning right before my afternoon nap. Either way, that second dose had me essentially unable to function for a large part of the day. So I cut it down to just one big dose at night. This has me sleeping through the night (mostly) and (mostly) alert during the day.

I also take lots of other pills: vitamins, anti-inflammatories (quercetin and bromelain), and herbs such as burdock to support my liver. I'll explain these in another post. That's it for now. It's time to go running.

Recent photo while organizing my medicine. Yes, it's still complicated! And it's worth it.