LIFE AS A PETRI DISH

There should be an expression for herxing similar to ‘when it rains it pours’. Something along the lines of ‘when it herxes, it berserkses.’ (Well, that could use some improvement.)

I don’t know about anybody else, but the herbal Lyme killers give me the worst herx reaction. From Samento I get a splitting headache, ditto for Graperfruit Seed Extract, with an added bonus of vomiting.

I discovered this last phenomenon two weeks ago. I was having some insomnia, as I often do, and my naturopath suggested I increase my GSE from three to four pills per day. It worked beautifully—I slept soundly for four nights, and on the fifth I woke up at 3am with a devastating headache: like little goblins had put steel bands around my head and were tightening them every ten seconds. Plus the god-awful nausea and subsequent hurling.

Needless to say, I stopped taking all GSE for about five days, then added it back in to my pill boxes when I felt I needed it. Of course I did need it; it's part of my current treatment plan.

Well, as Dr. Ross said in my last appointment with him, “you are your own best Petri dish.” (Thanks, Dr. Ross. I've always longed to be called a Petri dish!) Meaning, I can go to him or my naturopath Nesreen all I like, but in the end I need to find out what works for me by putting it into my body.

Unfortunately, it’s this trial and error method that works best. So it was that I added GSE back into my anti-Lyme mix, first one, then two, then three little brown pills per day. At three I was back up to my original, non-herx-inducing dose, mind you. And that day the die-off headache started again. Once it starts, in my experience, it just keeps going on its own schedule, no matter how fast you stop taking whatever pill it was that set it off.

That was this past Friday, the first day of a weekend-long class on how to find a publisher or literary agent, and how to market a book once it's published. I’d signed up six weeks ago and had paid $269 for it.

As the Mexicans say, ni modo. Or, as the Americans say, screw it. I went anyway.

It was all quite bearable on Friday evening, when the headache was in its nascent stages. On Saturday, however, I was operating on four hours of sleep and in addition to the crushing headache I had a jittery sort of feeling, as if the goblins had now got a hold of my molecules and were ripping them apart at break-neck speed. (Well, at least I wasn’t vomiting.)

The weekend actually marked a turning point for me. Until now, I have always put the the well-being of my body first. As I got out of bed on Saturday, I considered staying home. The added strain of being in class wasn’t going to help me get over the herx, I knew. From a health-care point of view, it would have been better to meditate, do yoga and take a good, long nap in the afternoon.

But screw yoga. I decided the class was way more important. Yes, I felt so trampled by 5pm on Saturday I could barely see straight, but I held it together for the duration of the class, and the class turned out to be invaluable.

(This was Alice Acheson's class. Take it if you are a writer.)

By Sunday I was feeling only slightly trampled by elephants, and I was quite a bit more articulate during class. Now that it’s Monday I feel as if almost all my molecules have been sewn back together again. So herxes come and herxes go, but I’m still not planning on taking Grapefruit Seed Extract for the foreseeable future.

BETTER LUCK ELSEWHERE

I recently described my internet foibles while attempting to submit a short work of fiction to the super hip magazine McSweeney's. Well, all's well that ends well. No, it didn't get accepted at McSweeney's, but another literary magazine, Chiron Review, will publish it in their December issue. An older writer tells me this a first-rate magazine, but like so many literary publications, to the most of us the name means little.

Since this is a print publication, not available on the internet, I will post the full story, "Vampire Snippets" on this blog in a few weeks. I think round about Halloween will be a good time for it.

Meanwhile, posts to the blog have been scarce. This is because I am concentrating on the second draft of my memoir. As I edit the first draft, I am amazed at what I remembered. I put myself into a time-warp trance while I wrote the thing. Now the memories often read as someone else's-- did all those things with all those vivid details really happen to me? Alas, there are volumes of it, and so much of it just isn't going to make the final cut.

The whole thing reminds me of journalism. The first draft is like one long interview I did with my memory, now for the second draft I need to sort through the raw material of the transcript for the good parts, and streamline it all and make it into something perhaps interesting to read.

DID YOU HEAR ABOUT MY BOYFRIEND?

The Poet read at a bookstore on Capitol Hill this week. It was a pretty big reading, with many poets from the local press who publishes them. So "The Stranger", one Seattle's alternative weeklies, wrote the thing up on their blog. And The Poet, my poet, was the star of the review. Here's the closing paragraph (with his name changed so he can keep his anonymity on this blog):

"And for those who do not yet know: [Naomi's boyfriend, The Poet] is the shit. If you're looking for good local poetry, you should definitely seek out his new book. [The Poet] read a couple of short poems, and then closed out the night by reading a long poem by the late Harvey Goldner, the much-beloved Bard of Belltown. [The Poet] passed the poem around the room, and a number of the readers took a turn at a few stanzas. It was a touching impromptu tribute to a great talent, and a lovely close to the proceedings."

HOW HARD CAN IT BE?

Last night I drew up a list of places to send my story "Vampire Snippets", and threw in McSweeney's, the hyper hip magazine founded by Dave Eggers.

Instructions are to send submissions by email. Easy-peasy. I'd already written a cover email to another magazine, so I copied the text, change the name from "Blah blah blah" to "McSweeney's" and pressed send. Only after I hit send, I realized I hadn't attached the story.

OK, so I'd email embarrassed myself in front of an anonymous member of the anti-establishment literary establishment. It stung, but I bucked up. The Poet did the same thing once, with a poem he submitted to the big reputation (that is, big in the world of experimental poetry) online magazine Jacket. He ended up getting published.

So, OK. I cut and pasted the text into a new email, checked that I had the correct address and I'd spelled "McSweeney's" correctly, and hit send. Only after I clicked the send button I realized I had forgotten, again, to attach the story.

Doh!!!!!!

Suddenly, I felt exhausted. I looked at the bottom right corner of the screen. It was 10pm. "Serves you right for trying to do this stuff so close to bedtime!" I said to myself. I resisted the urge to send one more email to set it right. Wiser to wait until the morning.

So this morning after breakfast, I fired up the computer, attached the story before I put in any text or even address, so I couldn't make the same mistake a third time. Put in a PS excusing myself for the previous two emails. All good. I pressed send, moved on to the next submission.

Next email submission, I copied my text from the McSweeney's submission email. Only then did I realize I had called McSweeney's an "online magazine". Nope, wrong, not an online magazine. Aaarrggghhh!

There is no way to reach out into cyber space and pull an email back. I can only hope the anonymous, hip, literary counter-establishment member who reads the emails at McSweeney's just skims.

WHERE I'VE BEEN THE PAST SEVEN MONTHS

Last week, I finished the first draft of the memoir I’m writing about my illness.

That is to say, I did it! For the first time in who knows how long, I’ve completed a long-term project that is not a quilt. It’s the first time since getting sick I’ve written anything longer than a short story! Actually it’s much longer than a short story—roughly 600 pages. Over the past seven months, I’ve been blurting into my Cruzer (G:) drive far more than anyone cares to know about a ten-year period in my life. (I didn’t know I had it in me to be that self-obsessed.)

I find it embarrassing that I’ve written so much, as if the 600 flabby pages were flesh and not verbiage. Flabby is still the right word for it. I haven’t reread it, but I’m sure it’s full of excessive recollections and boring tangents, as unsightly as cellulite. But that’s OK. No one has to see it until I cut away all the blubber. This is also known as writing the second draft.

As tempting as it is to start rewriting it now now now, I’m going to set it aside so that when I can come back to it with a fresh perspective. This, I am told, is the most effective approach. Even Zadie Smith recommends it.

After a few days of paying bills, downloading some new music for my ‘pod, and calling the credit card company to tell them to stop sending me those *%#*&^* checks I never asked for (it works, it turns out: they told me they’d stop sending them—try it yourself!), I’m devoting the rest of the month to short stories, perhaps even catching up with this badly neglected blog, and playing Connect 4 and basketball with David, who just arrived last night for his summer visit.

In August I’ll start toning and shaping my whale of a memoir.

THE SOLSTICE

Everyone in this city is preoccupied with sunlight. Day in day out we are longing for those precious breaks from the rain and clouds and long winter nights.

Now is the time of the year when the sun goes down at 9:30 at night and comes up at 5 the next morning. In other words, time to celebrate! In my neighborhood, that means the Solstice Parade— it's not just a parade, it's the best parade in the world! Thousands of people come from all over the city to see it. Here’s a video so you get the idea.

Last year I watched the parade with the Poet’s son David, and we had a blast. I was going through my Lyme tendonitis at the time and hadn’t danced since January. I looked with envy at the dancers going by, but also with an eye of appraisal. Most of them were just so-so, I thought. Then at the end of the parade the samba dancers swished down the street, bursting with energy, all their steps in synch, their band playing to beat the band, everything about them just plain fabulous.

I had one desire at that moment: to be part of the samba dancers.

“If my legs get better in time,” I told myself, “I’m going to join that group and be in the parade.”

Here it is one year later, and I did it! I saw the parade this year from the inside, looking out at the spectators as I danced down the street, full of energy and moving in synch with all my samba buddies. I haven’t had so much fun since I don’t know when.

OK, one more video. It starts with some painted people on a float, then there's my dance group, Girasol. (If you look closely, you can see me.)

Photos courtesy of The Poet!

SHORT STORY PUBLISHED TODAY

Life can be wonderful! A few weeks ago I got an email that my short story "On Money" will be published online. Today it is up. I am so happy!

ON MONEY

Do I really need to take an afternoon nap?

For the past ten years, the afternoon nap has been sacred. I cannot function without it, and the few days here and there when I was forced to skip it did not come out well, not at all.

A nap is a good thing. My naturopath tells me a short nap can be equivalent to three extra hours of sleep. I always wake up feeling refreshed, even I'm asleep for just five minutes. I also have to plan my day around this. Between the hours of one and three, I can't just be out anywhere without a bed handy.

But yesterday, I postponed my nap to work on the float for the parade. Everyone in the dance group is supposed to pitch in, and 1pm was the only time I had. I ate lunch and forced myself out the door, feeling a little groggy. By the time I was at the float construction station, five minutes later, I had a spring in my step.

It was a beautiful day. I worked energetically for an hour, then helped everyone clean up and walked back home, feeling strong and alert.

"Boy, I don't need a nap at all," I thought to myself. I took my antibiotics, which I usually take right after lunch, and I immediately started to feel sleepy. I lay down and slept for an hour.

And again today, I walked over the library after lunch to pick up some books, and didn't feel sleepy at all. I have yet to take my antibiotics, but when I do, I'll probably need my nap.

So am I safe to conclude that if it weren't for the antibiotics, I might get by without a nap?

Perhaps the point is moot, since I am, in fact, taking antibiotics right now. It gives me hope, however, that someday I won't need the antibiotics or the nap, which means I could do things-- like say, hold down a job, or go to an all-day dance workshop, or go to an all-day anything. It just might happen.

(This picture, "Sleeping Woman in Blue", is by Konstantin Somow.)

THE END OF AN ERA

Well, the blog has been getting quite a few comments lately, causing me to realize it's been two months since I posted. So here's a quick update:

1. I am done with the Rocephin injection! Hooray!!! Many thanks to the Poet who gave me the injection for nine of the 11 + months, even when it was more of a pain in his ass than in mine to do it for me. And thanks to my Mom, who did it for two and a half months and was tortured by it every time.

Also thanks to Abby, Samer, Nina and Ben, my casual encounters (so to speak).

OK, end of Oscar speech.

2. I got over the virus I mentioned in the last post, but it took a long month to do it. Have been back at normal speed since the end of March.

3. I am now on Omnicef, Clarithromycin and grapefruit seed extract, which feels like a dream compared to the last antibiotic combination I was on. Still taking tons of supplements, and giving myself Heparin injections, and must take a nap every afternoon. It also feels like I'm on the last lap of my treatment. Just one more year to go?

4. Progress: I am now dancing, riding my bike instead of driving, and running about three miles three times a week. Thanks to my amazing myofascial release therapist, the tendonitis is in the past. I've been taking Samba classes since February, and on June 19th I will be in the Fremont Soltice Parade with Samba dancers. Hooray!

CYTOKINES

After seeing Dr. Martin Ross yesterday and the naturopath the day before, the general conclusion is that I just have a virus.

"But it feels so much like my Lyme symptoms coming back," I said to Dr. Ross.

Not to worry, he told me. The Lyme symptoms are caused by cytokines, which cause the achy feeling and everything else, and the immune response to the virus creates more cytokines.

"Well, it's really thrown me for a loop," I said. "I was doing so well in December and January!" This virus has been dragging on for over two weeks, and iit's the second virus to hit me in the past month.

Dr. Ross always has a way of reassuring me.

"Don't worry, I see this a lot," he said. "With Lyme it can sometimes just take a long time to get over something like this. But you will. I can see you are so much stronger than when I first saw you. You have a essence of strength that you didn't have at your first appointment with me, and that isn't gone even though you're feeling a little run down right now."

Then he popped the question.

"Do you want to get off the Rocephin injection?"

Do I? Of course I do!

And I said no. It's working and I don't want to change anything that's working, even if it means a big fat needle in my derriere every morning. Besides, after two more months I can brag about getting an injection in my badonkadonk every day for a year. Serious street cred.

So I signed myself, and the Poet-- the manly administrator of said shot-- up for two more months.

Overall the mood of the appointment was light-hearted. This the second appointment with Dr. Ross when we've made jokes and laughed. He was downright celebratory. As for me, I kept saying, yes, I'm really happy. But it was the kind of happy when you just say it. You don't let your heart feel it, because you have this crappy virus, and besides, you don't want to jinx yourself. Because it feels like that day might come when you will throw your hands in the air and boogie, and you don't don't don't want to spoil the chance of that happening.

NEED DOCTOR RECOMMENDATIONS FOR VERMONT

This is for a fellow lymie in need. Does anyone know of a good lyme doctor in Vermont, or a naturopath who has some knowledge of Lyme, also in Vermont?

Here's another picture of Apollo, god of medicine and healing, to bring good luck to you, Samantha!

NOT SO FAST

So much for my idea that I could just coast from here to the finish line. A couple weeks ago I came down with what I thought was a virus, haven't been out dancing or done much of anything since. To add to it, the Poet and I got in a fight, partly due to some things I said when I was sick and crabby, which led to one of our bi-annual breaks-ups.

During this process we decide to end our relationship, and only after that do we stop shouting and listen to each other. After about two hours of this improved communication, we decide we would be happier if we stayed together. Generally the next day flowers are bought and we return to a state of relative sweetness and bliss.

Having gone through that on the weekend, and got out at last for a long walk with friends on Sunday, I thought I was over the worst of the virus. Instead it's been malingering, coming back full force today after I ventured out dancing last night.

Now I'm starting to wonder if it's some weird kind of herx, a reaction to increasing my heparin to the full dose as I increased my exercise, or perhaps the Rocephin losing its effectiveness over time. Anyway, I feel pretty crappy.

I'll be going to the naturopath on Monday to try to sort it out, and on Tuesday I have an appointment with Dr. Ross. It might be time to change up my antibiotics once again.

Whatever it is, I've been sleeping peacefully through it all. I send my thanks to Hypnos, the god of sleep, that wacky guy with the wings sticking out of his head!

BETTER LATE THAN NEVER

Here's to my cousin, Stephen, who has ridden his bicycle around the world to prove to himself and, well-- the world, that he could do it despite the fact that he has epilepsy. (That is not my cousin in the photo.)

He is giving a presentation at the Wilkinson Public Library in Telluride, CO this coming Wednesday at 6pm, just in case there's someone out there reading this who might be in the vicinity.

I've been meaning to put a link to Stephen's webpage, Seize The World, for some time-- about two months, in fact. Which shows how self-absorbed I've been lately.

Stephen came through Seattle with his bike in December. He'd just gotten off the plane from Japan (no, he didn't ride across the wetter parts of the world) and was about to head down through Oregon and across Idaho on his way back to his original starting point in Colorado.

Since I last saw him, he's been out on his bike every day, pedaling into winter winds and sleeping in a tent at night. Meanwhile I've been inside heated rooms, worrying about word counts and whether I'm taking my pills at the right time. Makes my own health stuff seem pretty wimpy!

I'm glad you've completed your trek, Stephen. You are one tough cookie! You're way cooler than the cool dude in the photo and you don't even have a moustache! (Thank god!)

UPDATE

No news is good news! I haven't posted here for a long time because I've been busy with other writing projects.

In my month in DC I met my goal of writing 50,000 words of my memoir. (164 pages.) I'm now back in Seattle and up to about 250 pages. It's a very rough draft-- meaning most of it is crap, and I'm sure I'll end up cutting about half of it. It's ludicrous that this thing is so long-- how can I be so fascinating to myself? Somehow I am. My brain keeps spurting out more and more elaborately detailed memories and I delude myself into thinking they're worth writing down.

I'm starting to suspect a good memoir is particularly difficult to write-- because almost everything about oneself seems significant, but to judge what is interesting to others and to tell it well is tricky.

And to put it all in context, at long last, at the 2.5 year mark, the treatment for Lyme is now like sailing on a glassy lake with a steady wind filling the mainsheet. I am on Rocephin, Minocyclene, Biaxin and Flagyl. Yes, FOUR anti-lymals, but the side effects are nothing more than sleepiness after I take my pills. (I ask you Apollo, God of Medicine, why couldn't I have had that side effect from the start?)

I am sleeping 8 to ten hours a day, every day: deep nourishing sleep. And I have managed to cut down on my supplements to boot. Now I'm only taking half a bazillion pills a day. Hip hip hooray!

During my trip home I started running-- running!-- and I have been able to keep it up for close to two months now, going 2 to 3 miles a few times a week. On the other days I do the gym machines or yoga or just go for a long walk. Exercise, I've discovered, is the key to keeping everything in balance.

My best advice to anyone starting treatment is move around as much as your body will allow. If that just means walking once around the block, that's fine. Be patient, build your strength, but move what little you can, whenever you can!

Last week I started dancing again. It's been a long year with the tendonitis, and I was worried I'd forgotten how. To my surprise, I did alright. There were some moves I'd forgotten, sure, but I'd actually say that in a way I was a little better than I was a year ago. For one, my body was much stronger than it was in January 09, and that made me more confident out on the floor. And then, since I hadn't taken a class in so long, I wasn't really worrying about which moves I did when, I was just going with the flow. It all came back to me without having to think about it too hard, and I was just... dancing!

INJECTION HUMOR FOR FANS OF THE OFFICE

Scene: The Poet giving me the injection. Over the past two days we've been sqabbling over whether I should put my hand back and brace the syringe while he has two hands on the plunger.

Me: I think I need to brace it, because once you started pushing yesterday it went in farther than it was at first, past where it was you checked for blood.

Poet: That's OK.

Me: No, because there was blood in the needle when you drew it out. (Blood in the needle is not good.)

Poet: OK, I'll pay attention so it won't do in any further, even after I start pushing.

Me: OK, I won't brace it then.

The Poet jabs in the needles and starts pushing down hard. I can see it's dipped down into my flesh, past the original point where The Poet checked for blood. It starts to sting as the Rocephin goes into my muscle. It stings too much.

Me: OK, this is going in way too deep!

Poet: That's what she said.

Me: (Starting to laugh as I put my hand back to brace the needle) No fair!

Laughing is not good while you're getting an injection. Your whole body shakes while you have the needle in and it hurts even more, which makes you laugh even more. I manage to keep the laughter in check, so I can better enjoy having this thing stuck inside me. That's what she said.