Lyme Story

WINTER SLEEP

2012-01-15T21:06:00.000-08:00

The last few days have been simple and sweet. I've just been doing whatever my body needs, whenever it needs it. I've slept enough every night, had patience with detoxing, energy for exercising, and a few hours in between for writing. One of the best parts about writing again is while I'm doing all my detox tasks, my mind wanders around in my stories, thinking about my characters or how I should revise a sentence. So much more fun than ruminating on which supplements I've taken.

The Poet and I have been trying to have a meal together, but it gets difficult while I'm on the Shoemaker protocol. So many times I end up eating dinner at 9 at night because the cholestyramine, my naps and exercise push my eating schedule later and later. Finally yesterday we agreed to stop trying. "We're good," we said, "we're spending time together anyway."

The first snow of the winter was today. I went for my usual four mile run, grateful I could run again after so many years of illness, and enjoy the big, wet flakes stinging my cheeks and covering the ground like powdered sugar. My book group was cancelled, so the Poet and I ended up having dinner together. We managed, at last, to be hungry at the same time. He cooked simple vegetables and fish-- it was lovely. And now I've found this wonderful illustrator, Jackie Morris. The picture of the woman and the bear sleeping is hers.

DR SHOEMAKER, OR HOW I STOPPED KVETCHING AND LEARNED TO LOVE DETOX

2012-01-13T16:17:00.001-08:00

I had a wonderful day today, and I have to thank Dr. Ross and the twenty-four hours of soul-searching he put me through. It's not that I'm following his advice. To the contrary, I've decided definitively and happily to carry on with the Shoemaker-protocol-plus-extra-detox I've been doing for the past four months. Dr. Ross might be surprised if he knew, but my experience as his patient tells me he would entirely respect my decision.

Those who are close to me know I've done my share of complaining about my current medical program, and even as I complained there was this part of my brain going--but weren't you the queen of accepting your circumstances? Didn't you do all that Buddhist stuff so you could get your soul in line with life-as-suffering? Why isn't it working anymore?

Well, for a long time it wasn't. I'd felt so close to completely better that a year ago I said 2011 was the year I'd be through with Lyme. And when Lyme, or Post Lyme, suddenly took over again, I just couldn't get my head around it. At my parents' house for Christmas a few weeks ago, I wept on my mother's shoulder for all those lost hours I'd spent just dealing with being sick.

But suddenly, yesterday, when faced with the alternatives, I felt at the most visceral level how deeply I still needed to keep on the detox plan. Because detoxing means rest and sleep, and I need that more than anything else in the world, more than the happiness writing brings me. or the joy of swing dancing, or the tempting trap of getting on with my life sooner rather than later. So what if there are a few more months when I don't do much besides drink teas and take naps and give myself enemas? Compared to a couple months of insomnia and a possible lifetime of managing sleep disturbance, I can afford to be patient.

Yesterday, something in my spirit just shifted, and my mental battle against the detox tasks melted away. I sank onto the couch in the afternoon and drifted in and out of sleep, I did a water enema before bed and slept soundly through the night, taking my regular dose of Cholestyramine the one time I woke up. In the morning, after the Poet's alarm went off, I stayed in bed, took more supplements and dozed for another hour. When the thought that I might be doing something more satisfying drifted among the half-dreams, I told myself no, this was the most important-- to give over to rest, to retrain my body to sleep all it needs to.

And when I did get up, I had a lovely day. Even though I spent quite a bit of time on detox, there was some time for writing, too. Nothing felt hurried, nothing felt out of joint.

NOT SO FAST

2012-01-12T17:17:00.000-08:00

Yesterday Dr. Ross laid out a plan for me to stop all my supplements-- just go cold turkey. And why not? After all, my physical energy level is good, my mental concentration is good, and recently my sleep is good. The thing that is keeping me from having a normal life is the detox protocol-- or is it?

Last March my sleep, which hasn't been good since I got sick, worsened and worsened, until by June it had been months since I'd slept eight hours a night. Six was the norm, seven a victory (although it never felt all that victorious). I woke up most mornings after six hours of rest thinking, "please kill me now."

In July, diagnosed with a genetic liver disorder, I went on Cholestyramine. But the Cholestyramine alone had me still pretty miserable, so in addition my naturopaths added in all sorts of support—Bentonite clay, herbal teas, fiber, enemas (because the Cholestyramine made me constipated), herbal sinus sprays, saunas, Epsom salt baths. It worked. I was no longer having insane allergic attacks, I wasn’t wiped out with exhaustion or constipation or aching limbs. By the last week of August I was sleeping eight or nine hours half the time, seven the the other half. I went through a rough bit again in November, but by December, eight had become the norm.

But to sleep, I've had to keep doing the detox. And the detox is so time consuming that it obliterates most everything in its path, particularly writing, which means particularly my soul. As my hours of sleep have increased, so has my level of frustration.

But when Dr. Ross said I should first cut down my Cholestyramine, then go off all my detox meds, my first reaction was apprehension.

Why would my dream of being free of my detox prison make me feel tense? My body was saying I wasn’t ready.

But Dr. Ross explained I might have developed physiological dependence on all the supplements. My body was just so used to having herbs and supplements pumped into day and night it that it didn’t know how to operate without them. Logically it made sense. By the end of the appointment he had me convinced.

“It will take three to four weeks for your body to adjust,” Dr. Ross said. “In the meantime, you could be pretty miserable and have trouble sleeping, so just wait it out.”

Of course, it could be a low level of active Lyme disease causing my continued need for the supplements. But we won’t know until my test results come back in three months. Or I could need the supplements for detox support, but I wouldn’t know that until I was through the four weeks of cold turkey.

“There are some people who are just left with sleep disturbance even after they get over Lyme disease,” he said we were winding things up. “We just manage it with meds.”

“Ugghh,” I said. “That’s not an acceptable possibility for me.”

I called the Poet after my appointment and he psyched me up to go off the supplements.

“This stuff has been making you miserable, sweetie. Ross is right. Just stop them all,” he said. “It might be brutal, but don’t worry. I’ll support you through it. Take the month, don’t worry about whether you sleep or not. Your only goal should be to watch as much Netflix as possible. It will be like a vacation for you.”

It didn’t sound like a vacation. A vacation would be waking up rested, writing every day, going to a dance class in the evening, or for a long run, and sleeping nine hours each night. But maybe I’d get there if I dove off this cliff into the cold-turkey canyon.

Yesterday I took the first step and cut my Cholestyramine in half—was supposed to do that for a week before I deep-sixed the rest of detox. I woke up this morning way too early with my body taught as a high wire. Things got worse from there.

At 9 I called my mind-body therapist, Jeanette, whom I’d been working with for years. Luckily, she had time to do an appointment with me at 10:30. I thought the relaxation therapy would help my body adjust to the decrease in meds, but as I talked things through and paid attention to how my body reacted, it was clear I needed more than that.

“I’ve worked so hard just to get things normal, to clean the mold out of the apartment, to find new clothes that fit me [I lost weight on the Cholestyramine], to clear away the sinus infection and do all the detox so I can sleep again, and now that I am sleeping Dr. Ross wants me to go through insomnia again. I just want things to be stable.” Just the thought that I would be starting on another round of physiological upheaval had me in tears. Willingly putting myself through more insomnia felt like psychological sabotage.

“I almost feel like if I put myself through more insomnia now, I might do permanent damage to my sleep patterns, and I’ll never be able to sleep well again.”

Truly, I just needed things to be dependable again. I don’t like the detox routine, but I know it, and by now there are dependable things about it—sleep being a big one, and my daily routine of when I eat and exercise and nap being the other. Just flying home for Christmas had disturbed my routine enough that I hadn’t slept well. Now that I was back in Seattle, I’d really been looking forward to things being normal, with no hurdles or upheavals or changes in routine.

Jeanette agreed.

By the end of my appointment with her, I had no doubts. I would do what I had to do to sleep, so that I might just have two or three consecutive months of normal sleep—something, I now realized, I needed more than I needed time to write or freedom to go on a trip or any of the other things I fantasize about doing when I’m done with Lyme.

Because I’m sure eventually I will be done with Lyme. So sure that I don’t need to rush it. The thing is, when I get there, I want to be done with Lyme and done with sleep disturbance, too.

IS THIS IT?

2012-01-11T15:50:00.000-08:00

Dr. Ross suggested a radical thing at my appointment today: it might be time to go cold turkey on my medical protocol.

PART A

After four years of antibiotics for Lyme followed by six months of post-Lyme clean-up (Shoemaker protocol), my daily workout has changed from walking two blocks to the mailbox and back to running four miles through my hilly neighborhood. My mental concentration is good, and although my chronic sleep troubles have not disappeared completely, most nights I get around eight hours of sleep. This last has come at the huge cost of spending the bulk of my waking hours keeping up with a crazy routine of liver detox drugs, nasal sprays, heparin injections, face masks, stints in the sauna, epsom salt baths and enemas (both to stimulate liver detox and to compensate for the constipation caused by the liver-support pharmeceuticals. (And this is with me keeping it simple: I've refused to do the neti-pot, mix my own bulk teas or make thrice-weekly colonic appointments, all of which have been suggested to me more than once.)

For the past five months on the Shoemake protocol, I felt like I spent my days sprinting on a gerbil wheel, sweating it out just to stay in place.

But the truth is I haven't stayed in place. While I felt like I was running in circles, I was spiraling up toward the light. Because now ti's pretty much normal for me to sleep eight hours out of every twenty-four. And while I still have chemical sensitivity and some level of mold allergy, during my Christmas trip home I could sit on my parents' perfectly normal couch without going into a sneezing attack, ditto for snuggling under a down comforter, two things I could not do a few months ago.

So maybe I am done, but I might not know until I try.

I certainly feel like I need all the supplements. Each time my sleep gets a little worse, it's invariably adding a new supplement, or often adding back a supplement I tried to drop out, that makes me sleep better. And when I forget to take my magnesium my legs ache, and when I later remember to take it my legs stop aching, and I feel all tingly and relaxed, which then leads to sleepiness.

But as Dr. Ross said, it could be the combination of supplements that creates the need for each one of them, and it could be that my body is just so used to being pumped full of vitamins, herbs and minerals that it's developed a physiological dependence on them.

What is undeniable is that my chief complaint right now vis-a-vis my illness is not that I'm tired or can't concentrate or am in pain, it's that all the medical stuff I have to do takes so much time I can scarcely do anything else. I am living in a virtual prison of supplements and detox procedures.

PART B

There is also the possibility that the reason I feel like I need all these supplements is I that I do, in fact, still need them, because I might still have active Lyme bacteria in my body.

AMAZING NEWS

Those with Lyme know all about the trouble with testing. Well, Dr. Ross informed me today there is a new Lyme test with 80% accuracy. In Lyme testing, this is tantamount to a miracle. So far so good. But here's the wrinkle: although the test is amazingly accurate(compared to other Lyme tests) it isn't all peaches and cherries. It takes a full eight weeks to get the complete results, and I can't have had even a drop of herbal microbials in the month before I take it. Given that I took a drop of Samento (an anti-Lyme herb) yesterday morning, I'm looking at three months before I see the lab reports.

So my work is cut out for me:

1. Stop anti-Lyme herbs
2. Cut Cholestyramine (liver pharmaceutical) by half for a week to see if I'm ok at that lower dose, then if I am I move on to
3. Go cold turkey on all my other meds and supplements, and then
4. Get the new Lyme culture test done and wait for results

I will record my progress on the blog

ALLERGENS::MY APARTMENT as SUPERMAN::KRYPTONITE

2012-01-05T16:05:00.000-08:00

My last post was Sept 10th-- almost four months ago. I keep a pretty strict policy not to post when things are going badly—to protect my own mental health as well that of my precious readers. Writing about how bad I feel just isn’t cathartic for me, and I’m sure reading about it isn’t therapeutic for anyone else.

My primary reason for not posting, however, has been even more basic than that: no time.

At the end of September, I flew back to Seattle after two months at my parents’ in Washington DC, and the Poet flew back from two months in Egypt. I arrived at our tiny apartment (a little gem of a place with a view of Lake Union, a shimmering emerald back yard, and in walking distance of anything you need) to breathe in mold.

To clarify: MOLD, the thing I am most allergic to in the world, so allergic that I have suicidal thoughts after a few hours in forced air heat or air conditioning, or—perhaps the more palatable alternative—become a raving, sobbing lunatic after said exposure. Don’t even talk to me about basements. To cop a metaphor from the title of this post:

Kryptonite:: Superman
as
Mold:: Naomi

except with way more melodrama in the mold-Naomi scenario.

Back to my story. While the Poet and I were away, condensation on the old, single-paned windows had created mildew on the decrepit paint of the window casings. The spores in the air had overwhelmed my air purifiers, which I’d been smart enough to leave running, but not smart enough to get new filters for. I’d also left strict instructions to our house sitters to keep the windows open, or at least cracked, but this clearly hadn’t been enough. The moldy, musty smell (ie mold spores) had gotten into every textile in the apartment.

So I spent September 27th through November 20th or so dedicating my every free moment to coordinating the mold patrol (house cleaners armed with bleach) and then getting rid of bedding, clothes, curtains, pot holders, papers, art supplies notebooks, and wood book cases, and my futon couch. I had such a steady stream of giveaways set out on the corner that neighbors asked if we were moving.

While this was going on, I had some terrible allergy attacks, one when I had to run out of the apartment with my teeth chattering uncontrollably as tears streamed down my eyes and I shouted incoherent things to my mother, whom I happened to be talking to on the phone. Thank god for that happenstance, since she is one of two people on this planet who could immediately understand what was going on and talk some sense into me. She got me to call my naturopath, Nesreen Medina, who came up with a wonderful solution:

SHOEMAKER PROTOCOL/MOLD ALLERGY TIP #1

1. Bentonite Clay. Nesreen was such a sweetheart she actually brought me this stuff on her way home from her office, since I was in no shape that day to drive to pick it up from her. It calmed me down quickly, and I was even able to go back into the apartment after I’d had my first dose of it. I’ve been taking it every day since then. According to Nesreen, it binds to “neurotoxins,” that is, the mold and other junk those of with Shoemaker livers can’t detox on our own. I love you, bentonite clay!!!!

So, after that crisis, I was able to go back inside and keep stripping things out of my apartment, until, with the passing of time, winter was coming on and I was left with the 15% of my clothes (the summer 15%) that I’d managed to salvage by running through washer countless times with industrial quantities of Seventh Generation Essential Oil of Lavender Blue Mountain Purer than Pure Eucalyptus and No Added Chemicals Laundry Detergent, and these precious clothes were stored in plastic laundry hampers in the kitchen, and I was sitting on the new organic cotton meditation cushion I’d bought at the Soaring Heart Futon and Mattress store (yes, that’s the real name), shivering in a summer sweater while I awaited delivery of a new air purifier filters and a new futon couch and read the instructions to my new Dyson vacuum cleaner.

(AN ASIDE:

DOMESTIC TRUTH #1:

It is an infallible principle of Newtonian physics that no matter how many plastic laundry hampers you have, they will always be in full use. I would like to note that two Decembers ago, after the freak snow storm that sequestered Seattle, the Poet and I used our plastic laundry bins as sleds, to excellent effect.)

The allergies until then had always been the sideshow of Lyme Disease, the bearded lady, so to speak, but now that I was out of the big tent, away from the clutches of the Ring Master, with all his fatigue and brain fog, it was time for me to take a good long look at the bearded lady, and then duel it out.

So I had my Dyson, and I had Ghusun (remember Ghuson—no?—well, she plays the role of kick-ass, no nonsense friend; if you don’t have a Ghusun in your life I suggest you go get one) who took me in hand and told me I had to allergy-control the apartment. No papers exposed to air, no clothing stacked on open shelving just because I was allergic to the dresser I’d tried to buy a couple years before at IKEA. No dust building up for years under the bed, no book creep as the Poet snuck more and more used books out of the extra room and into the comfort stacks next to his living room easy chair, no waiting until next week to vacuum.
Basically,

Ghusun:: Bearded Lady
as
Kryptonite:: Superman

I couldn’t have taken on the sideshow without her. I could not found my way out of IKEA without her, I could not have Dysoned under the bed without her, nor pulled the musty boxes from the way back of the closet without her there. And then she got a job.

So enter Susan, whom my mother found through a personal assistant agency. Susan was an angel disguised as a part-time nursing student. While I kept up with the Shoemaker protocol, she brought her sewing machine and hemmed the new curtains, made cushion covers for the bed, assembled a new set of drawers, organized closets, carried away boxes and boxes of books, sealed up the vents of the forced air heating system (which we’ve never used but nonetheless was putting dust into the apartment), and washed and dried and folded and organized and Dysoned everywhere as she went. Not to mention that every hour or so, she said, “This job is so much fun!”

And then the apartment was finally allergy resistant. We gave Susan a big hug goodbye, and it was time for David to arrive for Thanksgiving.

The bearded lady? Please. Don’t make me laugh.

A LITTLE BETTER

2011-09-10T14:42:00.000-07:00

About seven weeks since I was diagnosed with a genetic liver disorder and started the Shoemaker protocol for it, things are getting better. Clearly, I have a long way to go on this treatment plan—months more, for sure—but for the past ten days or so, the majority of nights I’ve slept over eight hours. The best my sleep has been in half a year!

The prescription drug Cholestyramine is at the heart of the Shoemaker protocol, and I’m only taking slightly more than half of the full dose it (3 grams 3 times a day, instead of 4 grams 4 times a day). After talking with my naturopath, I am resigned that this is probably all I’m ever going to take. My body just can’t handle more. I’m also giving myself a coffee enema every three days to further detox the liver, and this key. The night before the coffee enema is invariably the night I am short on sleep. I wake up and do the enema, am sure to get enough exercise that day, and I sleep well again for two more nights.

I am also downing liver-detox herbs round the clock. Ditto with magnesium citrate and Perque Potent C Guard (vitamin C powder), in order to keep my bowel moving. I am meditating again, and ratcheting up my relaxation exercises and my deep breathing. Basically, it’s back to 100% focus on my health now, and it’s starting to pay off.

SWEET REASSURANCE

2011-08-31T11:01:00.000-07:00

Extreme foods I’ve been eating lately: Watermelon rinds and sprouted buckwheat. My stepson’s friend showed me this summer how you can eat the rind of a watermelon. He took just a few bites from the slice he had in his hand. Last week I chopped up the flesh of the organic farm-share melon, froze it for later, and put the rind in the fridge. Have been eating a piece or two each day. Full of nutrients and perfect to get my cholestyramine-laden digestion moving! And the crunchy buckwheat is wonderful in yogurt.

*********************************************************

I have a policy of not going to the blog when I am down, because I can really write my way even further down, to the very bottom of the well of self-pity, and because I doubt anyone out there wants to hang out in the bottom of the well with me. (I’m sure whining and melodrama creeps into few of my posts anyway, but I do my best.)

So now I am coming clean: the first month on the Shoemaker protocol sucked me in like psychological quicksand. I was fatigued, I was overwhelmed with little medical chores that extracted my soul by the end of each day. I was barely sleeping more than I had before I started the protocol, and insomnia is scarcely a recipe for health and optimism. To make it worse, I am staying at my parents’ house, scene of my previous helplessness at the hands of Lyme disease, and I couldn’t help but wonder if time really was circular.

And I didn’t have any explanation for what was going on. I was supposed to be feeling better, and suddenly I had lost all the ground I’d gained from four years of antibiotics. Could all my progress vanish in a matter of weeks?

Yesterday I had a phone appointment with my naturopath, Amy Derksen. She reassured me all my symptoms were normal for someone starting Cholestyramine: the fatigue, trouble sleeping, over-the-top flare-up of mold allergies, yeast symptoms, continued need for blood thinners, etc.

“This just means this detox is a really big deal for your body.”

Which makes perfect sense. Two years living in extremely polluted Mexico City, then ten years of undiagnosed Lyme disease, followed by four years of industrial quantities of antibiotics while living with a compulsive collector us musty used books, and all of it, I’ve just learned, on a genetically handicapped liver. The detoxing would unquestionably be a big deal, and I guess this is just what it feels like. You’ve got to feel worse before you feel better, pain = gain, etc.

Just knowing what’s going on is enough to make me feel optimistic again.

Amy knows her stuff forwards and backwards, and she had quite a few suggestions for me, the first one being, increase your adrenal support—those poor adrenals are shot. So I’m back up to 9 Isocorts per day (had dropped it down to six a couple months ago and cheered at my progress). Other suggestions: a new technique for the enemas that helped quite a bit with digestion issues, and adding back in some neurotransmitters at bedtime, and some chromium to help with blood sugar regulation. All easy enough, all supplements I had just lying around since I’d optimistically stopped taking them a while back.

So yes, time is cyclical. I’ve looped my way back to the old pills I thought I wouldn’t need again. (Time is very frugal that way.) Time is also linear. I’m still heading in the direction of full health. Time, then, is shaped like slinky, and the bottom of the stairs is coming into sight.

CHOLESTYRAMINE

2011-08-30T18:34:00.000-07:00

On July 20th I learned my liver does not break certain toxins down into water-soluble molecules but instead dumps them into my colon as fat-soluble molecules, where they are reabsorbed into my bloodstream. This created the toxic back-up that eventually lead to chronic insomnia for the past six months.

To treat this problem, Dr. Ross has put me on Cholestyramine. I drink it down before meals, and once it’s in my intestines it absorbs the fat-soluble toxins as they exit my liver.

After I first took Cholestyramine I felt a little drowsy, so I lay down on the futon and took a little nap! After months of insomnia, any sleep, even for a few minutes, is a godsend. I took this as a sign the stuff was doing what it was supposed to.

I am now at the end of week four on it, and here are some observations:

The regular Cholestyramine you’ll get at your drugstore tastes like Tang—one of my favorite drinks when I was eight years old. Yum! From the label, I saw what I was drinking was actually about 40% Cholestyramine and 60 % sugar, preservatives and flavoring. If, like me, you are taking Cholestyramine to support your liver, this is not a good thing. Probably, like me, you have chemical sensitivity and you can’t tolerate sugar or food additives.

(Under normal circumstances, I would not come near anything that tastes remotely like Tang. Anything that even smacks of a food additive—and that includes the “natural flavors” that are in the ingredients list of practically every packaged food, including organic foods—makes me feel ill. But for prescription medications, what can you do?)

After a week at a half dose of Cholestyramine, it was giving me a little headache each time I drank it. At three-quarters dose, the headache was intense and round-the-clock.

It turns out you can get Cholestyramine from Clark’s Pharmacy, in Redmond, WA, without all the sugar and additives, and thus without the accompanying headaches. I ordered mine as soon as my naturopath told me about it, and was never so happy to get a package in the mail.

In it’s pure form, Cholestyramine is a white powder that smells like fish. When you mix it in water, it’s the consistency of wet cement. In your bowels, it turns into dried cement. All around, it’s a very pleasant medication!

The best thing I’ve found to mix it with is tomato juice, or Knudson’s Organic Very Veggie Juice. It’s pretty pulpy, so it suspends the cholestyramine and ameliorates the sandy consistency. If you add some cumin and cayenne pepper, it’s a pretty tasty drink!

Once you have a few rounds of cholestyramin in your intestines, you can feel pretty uncomfortable. I’m already on Vitamin C, magnesium citrate and the coffee enema to prevent constipation, but there have been days when I still felt like I had my whole street’s worth of sidewalk paving squares in my bowels. I’m now taking fiber capsules with Very Veggie concoction, and that helps. My naturopath has also told me to take up to four capsules of magnesium citrate 30 minutes after swallowing the cholestyramine. I’m trying it today.

LINKS

2011-08-26T15:19:00.001-07:00

Ok, so I haven't been that great on putting useful links about Lyme disease on here. I'd just like to point out, however, that there are quite a few followers on this blog and many of them have very useful links to sites with good information about Lyme. Thank you, followers! And thank you for reading!

THE COFFEE ENEMA

2011-08-20T14:16:00.000-07:00

There are two types of people: those who view coffee as a drink and those who go to great lengths to put it up their butts. Once, I was in the first group. Now I am in the second.

So how did I cross over to the dark side? My naturopath Nesreen Laham Medina first suggested I try an enema. I was so desperate for sleep at that point, I was willing. She didn’t say coffee—I’m sure I would have balked if she had.

“A water enema,” she said. “We’ll give you the equipment, and you can do it yourself in the bathtub. You can hang the bucket from the shower head so that gravity helps the water into your colon. It’s very easy.” So I went home with a special little bucket with a small spout at the bottom, and a bunch of flexible tubing that connected to the spout.

It turns out that hanging the enema bucket from the shower head is not a good idea—at least not with my type of shower head. I got everything set up and was lying the bathtub with the tube up my butt when the bucket came crashing down on my head. All right then. As my stepson says, “do-over.”

I de-tubed myself and washed everything out and looked around for another solution. In my bathroom there is a slowly dying spider plant on a four-foot high plant stand next to the toilet. In no time I had said spider plant on the floor and the stand next to the bathtub, with the enema bucket on top of it. It was sufficiently high off the ground to get the gravitational effect I needed.

The water enema was a success! I slept really well for the next couple nights. But the second time I tried it, it didn’t have the same effect. (This was in fact, a pattern over the past six months—anything I tried to get to sleep worked well once or twice, but then, as the toxins kept building up in my system, the insomnia overrode any minor detox effects I’d achieved with these baby steps.) But I had a powerful intuitive hunch that the water enema had me headed in the right direction.

So what to do? I had this vague notion about a coffee enema. I’d heard about it somewhere. That wasn’t quite recommendation enough—a hazy idea that people somewhere for some reason put coffee up their butts. But someone—a doctor, a friend into health stuff, must have mentioned it to me, because it was floating around in my head, and surely I didn’t put it there. I may write stories about people who keep pet vampires, but I couldn’t have come up with that, even in my wildest imagination. Looking over the instructions that came with my enema kit, I saw they were in fact for a coffee enema, not a water enema! My next appointment with Nesreen wasn’t for another week, and once again I was desperate for sleep, so I thought, why not?

That first coffee enema was transformative. I did it about 11 am, and for the rest of the day I felt wonderfully relaxed, also desperately thirsty, and I could feel a tingly, pin-prickly buzz in my arms and legs as I felt the effects of the enema pulling stuff out of my body. I can’t tell you why, but it was a distinct sensation of things coming out of my cells. Usually when I feel a healing buzz, for example when I take Vitamin C or B12, it feels as if things are going in to my muscles and cells. It feels nurturing. But this was inarguably a sensation of extraction—an extraction that needed to happen. It was sweet relief.

I slept well for the rest of the week. In fact, I was so relaxed I spent a great deal of time on the couch, watching TV or just spacing out. I couldn’t really move, I was so relaxed. The way you might feel after months of tension have been washed away. And it’s been true love-hate ever since.

So here’s the short of it on detoxing: you can take all the cholestyramine and charcoal and chlorella and liver flush herbs you want, but nothing beats the coffee enema. I wish it weren’t so, because this is surely the most time consuming solution I’ve found so far for my Lyme-and-liver woes, but I’ve also come to be quite fond of the process, simply because it works.

TIPS AND TRICKS FOR THE COFFEE ENEMA:

1. Don’t hang the enema bucket from the shower head. Use a plant stand, night stand or tall kitchen stool next to the bath tub.
2. Take your time—and do what you have to get it. Tell your family you will need privacy in the bathroom, lock the bathroom door, ask your spouse/partner to take the kids for a bike ride, or let the kids play video games. Whatever it takes so you know you won’t be disturbed.
3. The first few times, give yourself a full hour. This will include set up and breakdown, and plenty of washing of the enema equipment. I run hydrogen peroxide through the bucket and tubing before the enema, and wash with lots of Dr. Bronner’s liquid soap afterwards, and use hydrogen peroxide again on the red tube (the one that’s just been up my butt). As you get more practiced at the enema, you can get the total time down to closer to forty minutes.
4. Buy the biggest container of hydrogen peroxide you can find. It’s cheap and is the safest, most non-toxic way to sanitize.
5. Plan ahead. Make the coffee three or four hours beforehand so it can cool to room temperature, or put it in the freezer for an hour to cool it down. Perhaps this is obvious, but: do not use hot coffee!
6. I use a full coffee grinder’s worth of coffee and brew it in a 28-oz French press. This makes about 24 oz of coffee and I use most of it for the enema.
7. Do the enema after you’ve had a bowel movement, so it’s easier to get the tube up there and don’t feel cramping, but also do it as early in the day as possible. If you do it after 12 noon, it can keep you up at night.
8. Use a chemical-free lotion to lubricate the tip of the enema tube, such as one of the Alaffia Shea-butter based products. Put a folded towel in the bathtub and lie on your back while you give yourself the enema.
9. Once the coffee is in, hold it in for up to fifteen minutes. (Ten is fine at the start if that’s all you can manage.) Set a timer, lie on your back or on your right side and read a book or listen to something that relaxes you. Since your organic lotion is handy, use it to gently massage your stomach in a counter-clockwise direction, starting at the lower left pelvis and going along up under the ribs and back down again on the right side. This helps keep the coffee in, pushing it up towards your liver. The instructions that came with my enema kit advise against keeping the coffee in for more than fifteen minutes, and from my own experience, I do too.

It’s not dangerous if you keep the enema going for a minute or two more, but the times I’ve done it for closer to twenty minutes the detox effect has been over the top--almost like I'm on a drug. (I feel fabulously relaxed, yet my brain is going 90 miles an hour and I can't keep a thougt in my head for more than five seconds. My senses are intense, and on high alert, but also quick to flip into edginess.) This usually leads to trouble sleeping that same night, and if you do it repeatedly it will put a strain on your system and wear you out! I'm not saying never do the enema for more than fifteen minutes--for example, if you've got a terrible detox headache and think doing a longer enema will help, go ahead. But don't do it regularly.
10. After fifteen minutes (or less), the coffee has done its work on your liver and you’re ready to expel. Again, take your time. It might take a few minutes for everything to come out.
11. Plan to get a good dose of exercise later in the day, even if you’re just doing the ten minute version. This will help move the coffee out of your system and help you sleep.
12. Drink plenty of water, and add electrolytes, because the enema pulls them out of you. If you don’t have electrolytes (and I don’t mean Gatorade!), call 877-CRAYHON and ask for Peltier Electrolyte Concentrate.

THIS IS WHERE I GOT BITTEN BY A TICK

2011-08-16T08:17:00.000-07:00

Pretty, isn't it? This what you see from the porch of my parents' weekend house. I was bitten here in March of 2000, and in all likelihood once before then, probably when I was teenager. I haven't been back since I moved to Seattle in 2004, both because once I was in Seattle I began to suspect I had Lyme disease, and because I have terrible, kill-me-now allergies when I am inside the house, which is built on top of a cache of mold of WMD proportions.

With hindsight, I know it wasn't just the tick bite that brought on all my health problems. Although I undoubtedly had Lyme disease, it took going to Mexico, where I got parasites and exposed myself to tons of pollution, to set it off. I also now know I have a congenitally weak liver (see my posts under the label "Shoemaker protocol" for more on that), which I'm sure contributed to the downturn.

Still, I've avoided the place until last Friday, when loneliness got the better of me. My entire family, minus me, goes here at least a few times a year for the 4th of July, etc. My parents go every weekend, and in the summer my brother and his family usually join them. And last week, after two weeks of living like a hermit, I decided I just had to go so I could be with my family-- mom, dad, bro, sister-in-law, neice and three-month-old nephew. It was just this overwhelming desire to be part of things. I decided it was worth the risk to go for the afternoon. I stayed in or right next to the pool, where it's paved, always wore my shoes when I cross the grass to the house, and no, I didn't get a tick bite. I also had a lot of fun.

I think it's worth a repeat. Today I will also order Daminix, something I've been meaning to do
for a long time, because it reduces the risk of anyone there getting exposed to Lyme, and although my family seem oblivious to it, I don't want them to be running that risk either.

So here's what happened when my two and a half year-old niece, Maggie, painted her toes (nail polish compliments of the other grandmother!)

LIFE IS FULL OF PLEASANT SURPRISES

2011-08-16T07:44:00.000-07:00

I have been without internet for quite some time, but meanwhile life on the Shoemaker protocol has inspired me to write a few more blog entries. I will be posting them here over the next few days.

August 5th

I arrived at my parents house two weeks ago, where I’ve been sequestered here with my French press, my enema tubing, and my array of powders and teas. I am dealing the new medical regimen. Despite Dr. Ross’s optimistic suggestion that I “cut down on my supplements” (see last post), high speed detox is not easier than antibiotics. We’re talking two naps per day, coffee enemas, neti pot (yes, the dreaded neti pot) and nasal spray and bulk herb teas, etc, etc. It’s pretty much a round-the-clock job, and I have to schedule it when my body wants to do it, not when I want to.

After a day of all that, it just seems too complicated to pick up the phone. All I want to do, really, is get back to writing my short stories and eventually my memoir. By avoiding the Motorola and heading instead to my laptop (as soon as I get a break from the medical stuff, that is) I’m managing to eke out a half hour or hour here and there. Not much, but enough to polish a couple stories and think about where to send them for publication.

In short, I haven’t seen anyone since I got here but my mom and dad, and The Poet via Skype. It’s so easy when I’m here to go into Hermit-of-Lyme-Disease mode!

But eventually there comes a day when I feel really down. Yesterday started out just fine—the high point being about 11 a.m., right after I did my coffee enema, when I felt the tightness in my body swooshing away, followed by a cascade of relaxation so glorious it bordered on euphoria. But within a few hours the relaxation had shifted to heaviness that stubbornly refused to give over to sleep when I lay down for my afternoon nap. And once I got out of bed, for my supposed writing time, nothing worked—the internet connection was so slow I couldn’t look up the facts I needed to finish a short story. So frustrating!

By the time my mom and I had walked back from picking up the CSA at 5pm, I was despondent. The excess of vegetables felt like the weight of the entire world hanging over my head, an obligation to cook when all I wanted was a few hours—even twenty minutes!—when I could use my brain—read, write, anything. I put tomatillos and zucchini and bell pepper and onions and okra and cucumbers in the fridge, which in itself seemed to take forever, wearing on my worn-thin patience for menial tasks. And also I had to get outside—I’ve barely been outside all summer, and I desperately need to get the sun on my skin. I changed into my bikini. Whatever I would do in my one task-free hour of the day, it would be outside in the sun.

Not by coincidence, the day before I’d gotten one more rejection of a story I’ve been trying for eight months to get published. Rejections are part of the game—usually I shake them off in a split second. But this one managed to sink just a bit. My life makes little sense at those moments—mind-numbing medical tasks all day, and then the suspicion that writing, the thing in life that makes me happiest, might be just a pathetic dream after all.

If I just had someone my age to talk to, I thought, I might feel better. My mom’s great but it’s like she’s practically the only person I’ve seen (duh, she is practically the only person I’ve seen)…. If there were someone else around, a friendly face…. And finally I remember I do have friends in this city, and they do have phone numbers!

So I called people, and got their voice mails.

I took my book out to the sunny back patio. I read in waves of concentration that alternated with tsunamis of despair—times when I put my head down and just felt how tired I was, how tired my brain was. And worried about my changing symptoms—like, how tired I get after the coffee enema, and irritated my sinuses are. I can’t even sit on the upholstered living room couch anymore (once a favorite refuge) because the cushions are now, suddenly, so musty to me I can’t stand to be near them. What’s up with that?

So should I call Dr. Ross and ask to test for the sinus infection—and possibly go on more antibiotics? So should carry on with the herbal remedies and neti pot? Could I find probiotics for my nose? Maybe I could look it up on the internet—doh! The internet isn’t working.

And so on.

And then, at 9:30pm, I tried checking my e-mail. Lo and behold it worked! And I learned I won an award for a short story I finished a year ago.

!!!!!!!!!!!!!!!!!!!

I’m not supposed to say what award, because it’s supposed to be confidential until the publication comes out, and it’s not a Pushcart or an O’Henry or anything like that, but does sound pretty fancy!

Hooray!!! Hooray!!!! A big dollop of joy and a sprinkling of redemption. I’m not just a crazy woman who spends half the day putting coffee up her butt. I am a writer who puts coffee up her butt and who has won an award!!!

THE EVIL NATUROPATH

2011-07-31T11:25:00.000-07:00

“Go see your naturopath,” Dr. Ross told me at my last appointment, “and cut down on as many supplements as possible.”

Yippee! At last some relief from the endless gerbil wheel of pills, powders, bulk teas, injections, ointments, lozenges to be dissolved under the tongue, and end perhaps even the enemas. Dared I hope for that? The coffee enema, which requires making coffee, cooling it down in the fridge, cleaning a system of tubing, setting up said tubing, laying down towels, washing towels, washing tubing, washing my bottom, washing the coffee pot…. I called my naturopath’s office as soon as I got home from Dr. Ross.

My regular naturopath, Nesreen Medina, is out on maternity leave, so saw the naturopath who had stepped in for her, someone I didn’t know. I brought along my pills in their big black bag, a full-bodied eco-grocery tote, filled to the brim.

I wasted no time explaining to the naturopath that I had been diagnosed with a genetic liver disorder and had just started cholestyramine and gone off my antibiotics.

“At this point it looks like I might be over the Lyme, but I need to detox and then the next step would be to see if I have a sinus infection that might be dumping more toxins into my system.”

I told her about the insomnia, and how I’d been taking more and more time-consuming supplements in the last six months, to the point where just doing medical stuff was eating up almost all my time, and I was only barely managing to get enough sleep to keep from going crazy. “I really need to simplify the routine because I can’t stand it anymore.”

“All right, sounds good. Let’s cut down on your supplements.”

“Great!” And the next thing out of her mouth was (I swear to God):

“Have you ever tried the neti pot?”

I was a half millimeter from screaming. Did this woman not understand the word 'simplify'? I told her as much, as politely as I could, although what came out of my mouth did include the word ‘scream’ in close conjunction with ‘neti pot’.

“OK, I understand,” she said. “Maybe we can give you a nasal spray instead. That would be easier.” She explained that she was quite familiar with the Shoemaker protocol, and in all likelihood I did have the sinus infection. “So you can do all the detox and liver support you want, but if that fungal infection is still dumping toxins into your system, you’re not going to feel a whole lot better.”

Got it. Very good to know. Burn out is burn out, however. There was still no way I was going to start using a neti pot—yet another vehicle for forcing a liquid up an orifice of my body that is not designed for having liquids forced up it; said vehicle and liquid also requiring preparation and subsequent cleaning.

It just wasn't happening. Give me the nasal spray!

At the end of the appointment I had two new nasal sprays, a new powder to be mixed in water before drinking, and instructions to buy a machine that cleans away mold spores by dispersing bee pollen into the air (don't ask me to explain this one). True, she had not forced the neti pot on me (and that is not me in the above picture, by the way!) and she had cut down my supplements by two thirds, but everything she cut was a pill. This will save me money, but not time. The twice daily injection and every powder that requires mixing, bulk tea that requires brewing, and lozenge needing to be absorbed sublingually was still in the mix. And I had instructions to increase the coffee enema to three times a week.

“I had hoped I wouldn’t need the coffee anymore, but it makes sense to keep doing it,” I said, trying to be cheerful. The coffee enema is a powerful liver cleanser. I always feel miraculously relaxed after doing it, so I couldn’t argue against it.

“Keep in mind that cholestyramine causes constipation,” the naturopath said. “So the enema will help with that. Actually, what would be best is a colonic. Do three colonics before you leave for DC.” That was six days away. If I told her I would scream with the neti pot, what did she think would happen when she asked me to get a colonic every other day?

I drove home stewing about all the new things I would need to add to my daily routine, trying to sort out when I would get them done. By the time I parked on my block I'd come to the conclusion that the naturopath was delusional. There's only so much a person can reasonably do to get better, no matter how desperately they want to be healthy again. I did not order the bee pollen machine, and I did not get three colonics before I left for DC.

And yet, despite the title of this post, the naturopath was not evil. The nasal sprays and the powder turned out to be quite useful. I increased the coffee enemas, and even did a salt water one (the poor woman's colonic) and all of it is helping my body unwind from years of antibiotics and six months of toxic hell. So I realized the naturopath was simply the messenger, and the message was one that was hard to hear: even off the antibiotics, there is more work to be done. I’m not free from aggravating medical tasks yet. It’s undeniably a lot of work, and the other part of the work is to make peace with the work, so it becomes less aggravating.

It can’t go on forever, I tell myself. Soon, I will get my time back, get back to finishing my memoir, which has been on hold for months. Be patient, I tell myself. Meanwhile, I am sleeping eight hours a day, last night it was more than eight, and that is a relief.

SPROUT CRAZED

2011-07-29T11:43:00.000-07:00

My co-op stopped selling sprouts, so I learned to make them myself. How happy this makes me!!! (A much better health-nut kitchen project than home brewed kombucha, at least for those of us with yeast/fungal issues.)

There's an infinity of stuff on the internet about how to sprout, so I won't add to it. I'll just say that when I eat sprouted lentils, I immediately feel energized. They're packed with enzymes, vitamins and proteins, and they taste delicious.

My favorite so far: sprouted buckwheat, toasted to a nice golden brown and mixed into yogurt. Yum!!

RAINBOW

2011-07-20T11:14:00.000-07:00

My appointment with Dr. Ross started like any other.

“On a scale of 1-10, where would you say your energy is now?” he asked. And I came back with my usual reply:

“7, but that’s not what my issue is now.”

How could I convey what my life has been like? On Saturday morning, when I got out of bed after only six hours of sleep for the nth time in the past six months, I felt desperate and teary. It wasn’t just the standard why-don’t-I-just-kill-myself-now that can pop up on these occasions and that I know how to steel myself against. This was a physical sensation, of being physically battered, imprisoned in my body, and with it came the need to fight back, without knowing how.

“I just want to break my body!” I sobbed to the The Poet. “My body is torturing me!”

And now, in the appointment with Dr. Ross, I said. “I have physical stamina, but I can't function like a normal person. I can’t be on any schedule other than my body’s, or it’s extremely painful. I can barely function if I don’t take naps during the day, and I’m taking so many supplements, brewing tea and mixing powders in water, that it takes up half my time.”

“How many supplements, roughly? Twenty?”

“Thirty. And I get terrible headaches and I’m now giving myself a coffee enema twice a week. It’s the only thing that clears up the headaches and allows me to get barely enough sleep.”

I wanted to ask him if he knew anything more about the Shoemaker protocol. Even if I didn’t have the liver condition that I’d been hoping for, there was still the chance of the nasal infection that could be treated. But Ross was interested in the coffee enemas, took a few notes on what I told him.

“I have some new information for you,” he said, putting aside his laptop. He picked up a book, and on the back I recognized Dr. Ritchie Shoemaker’s photo, the same one as on his website. Ross got up from his chair and sat in the one next to mine, so I could see the page he'd opened in the book. He also opened my medical file to my lab tests, the ones from May, with the HLA-DR liver typing.

“I finally talked to Ritchie Shoemaker,” he said. “And I pinned him down about how to interpret these tests.” He showed me a chart in the book, and how certain numbers on my lab results matched up to the ones in the chart. I had a perfect match, three out of three.

“So this means I have the genome for the weak liver you were talking about?” I asked.

“Yes,” Dr. Ross said. “It means your liver doesn’t make the correct enzymes to get rid of toxins, especially mold and Lyme toxins.”

So it was true after all. My liver wasn't working the way it should be. I let the news sink in, the air around me felt lighter, brighter. It almost shimmered.

Beautiful surprise. As thrilling as when I got the e-mail that my first short story would be published--even bigger than that. Everything would change now. Stupendous.

“For real?” I asked.

“Yes.” Dr. Ross was crossing the room, back to his usual chair so he could make notes on his laptop.

“So I have the ‘dreaded genotype’?” (Amy Derksen had used this phrase.)

“That's what Shoemaker calls it.” Ross looked like he wasn’t sure whether or not to smile.

“Oh my god, Dr. Ross! That’s wonderful! I want to hug you!” I jumped up from my chair and threw my arms around him, and we both burst into laughter.

"OK, let's talk about treatment,” he said once we'd regained our composure.

“Cholestyramine?”

“Exactly,” I sat back down, reached for my notebook to start taking notes again, still in amazement. I knew at last why I’d been suffering so much. I felt tears in my eyes and turned my face down to my notebook until the moment passed. To hug my doctor was fine, but to then start sobbing would have been too much.

We discussed Cholysteramine—a prescription medication that will bind up the toxins my liver isn’t processing correctly and pull them out of my bowel.

“And I want you to stop your antibiotics,” he said.

“You do?”

“Yes. At this point, I’m not even sure you still have Lyme. It could all be caused by liver issues. Let's let the cholestyramine work on its own. And go see Amy Derksen again so you can cut down on your supplements as much as possible.”

I walked out of my appointment transformed. I might be able to break out of this prison after all.

THE SHOEMAKER PROJECT

2011-07-19T19:27:00.000-07:00

When I last saw Dr. Ross, he was excited to try a new approach, pioneered by Dr. Ritchie Shoemaker, which focuses on chronic inflammation caused by factors other than Lyme. That would be (as Dr. Ross explained to me) low Vitamin D, a sinus staff infection, and liver issues. When I ran the tests my Vitamin D was in fact low (see above), but when it came to my liver test (HLA-DR typing) Ross said he needed to do more research and talk to Shoemaker, but he was 90% sure I didn’t have a genetic liver problem.

I was really, really disappointed I didn’t have this. Yes, I know well and strangely pickled when you find yourself wishing for irreversible genetic typing that corresponds to health issues, but that’s where my life is right now. I’m up to my eyeballs in liver detox herbs (five at last count!), liver flush teas that need to be brewed daily, coffee enemas, vitamin C and fiber that need to mixed thoroughly in water before I can take them (three or four times daily)…. It goes on and on, until I feel like 75% of my waking hours are taken up by fulfilling these thirty-second to ten minute tasks—all for the purpose of detoxing, recovering from antibiotics, getting the Lyme die-off out of my system. And as soon as I slack off it means I won't sleep! So the genome typing would have explained a lot of things.

As for the sinus infection, the test kits for it are unavailable for now. I’ll go see Ross next week for a follow up. Here's hoping he's got that test kit.

In the interim, I went back to my old naturopath, Amy Derksen.

“At this point, I’m surprised at how things are going,” I told her. “I’m at the four-year mark on antibiotics, and I’ve made tremendous progress on physical stamina, but the other symptoms, especially insomnia, won’t budge.” She agreed with me, and said she thought the Shoemaker protocol would be helpful. Given the rate I’m needing to do coffee enemas, she said, I have major detox issues, and it’s time to ask whether all of the toxicity is coming just from Lyme or if there are other causes. She changed a few supplements, adding a couple to speed up detoxing, but again she wasn’t familiar enough with Shoemaker’s work to launch into it full on right now.

So I decided to take matters into my own hands. For August and September I will be at my parents’ house in DC. Since Shoemaker is in Maryland, I looked him up on the internet so I could schedule an appointment. It turns out this is not as simple as I had imagined. There was no phone number on the website. I had to fill out an online form requesting an e-mail reply that will give me a phone number to call in order to schedule the appointment. I have yet to receive the e-mail, but the info on the website explained I should be patient—it can take up to two weeks before they send it. So now I am on the wait-list for an opening in the schedule of the appointment scheduler! Now that's a doctor in demand.

THE CHAOTIC TIME OF YEAR

2011-07-12T21:02:00.000-07:00

My last post was over two months ago! Not surprising, given everything that’s been going on: installation of a multi-tiered network of soaker; picking up my friend Kelly’s dog from doggy daycare twice a week, since Kelly had a stroke and couldn’t walk him for a while; reducing, organizing and storing The Poet’s hoard of books that had taken over every square foot in the second bedroom, in order to set up a bedroom for my stepson, David, which required buying new furniture; and, since April, practicing and for the Fremont Solstice Parade. All of this culminated in Daniel’s arrival on June 11 and the parade itself on June 18th.

Throughout it all, my body has been on its own break-neck healing schedule. I got up to the full dose of 12 amoxicillin capsules per day, plus two tetracycline and one giant diflucan pill at bedtime. There’ve been killer headaches, and the insomnia has persisted. Everything I’ve done to get myself sleeping again has worked—for about three or four days. Then the insomnia bounces back—after increasing Vitamin D, stopping monolaurin, restarting monolaurin, increasing quercetin, doing coffee enemas, drinking liver detox tea, adding Sacro B…. Needless to say, the steps in my Lyme treatment routine have become baroque lately.

By early June my ever-expanding to-do list became so overwhelming I had to write out not just a daily list on a palm-sized note pad as I usually do, but create a multi-tiered flow chart that showed which tasks were highest priority for the coming week, and which could be put off until the week after. Said chart took up an entire page in my writing notebook. Doing this actually made me feel calmer, since the tasks were no longer swirling around in the whirlpool of my brain on five hours sleep, but instead anchored to a sheet of recycled wood pulp, where I could clearly see which ones I had to worry about today, which next Wednesday.

There were times when I caught myself longing for the good old days when I had just started my antibiotics, back when my life was much simpler—when I was too sick to write or care whether The Poet was turning the apartment into a mausoleum for moldy books, or consider landscaping a garden. This was before I had the energy to take on things that approximate a normal life, something I’ve done over the past couple years as I’ve gotten stronger and had more energy and sleep has been fairly reliable. Back before all that, my big event of the day was walking the four blocks to the mail box and back, at which point I’d finished my to-do list and gotten all the exercise I could handle.

UPDATE ON SLEEP

2011-05-08T07:22:00.000-07:00

I slept 7.5 hours last night, and am about to go back to sleep again now that I've had my heparin injection, breakfast, antibiotics and supplements. Since my appointment with Dr. Ross I've made some improvements in my sleep. Here's what I'm doing:

1. Increasing quercetin. I've only needed three caps a day until now, but I doubled it because of Dr. Ross's theory about inflammation.

2. Starting Sacro-B. This is the "good yeast" that your gut needs, and it's on Dr. Ross's list of basic steps to reduce gut inflammation.

3. Coffee enema! (More on this in a future post.)

4. Getting to bed early

5. Meditating, staying calm, giving myself all the time I need to fall asleep-- even if it takes an hour of meditation in the morning just to fall asleep again for half an hour. It's worth it.

2011-05-08T06:56:00.000-07:00

Yesterday I rode my bike a couple miles over to Dandelion Botanical Company to attend a support group called "Dudes and Chicks with Ticks". I've only gone once to a support group and it was a disaster. Way too much complaining, not enough constructive information sharing.

But the meeting yesterday was called "Lyme Success Stories" and we were told to bring positive attitudes, so how could I not go? We all sat around a table in the upstairs conference room and shared what had worked for us in our treatment, and it was really great to meet others with Lyme who had a positive attitude.

At the end of the meeting, two women who were in remission spoke about how they had gotten there. (Remission, in this case, means they have finished their Lyme antibiotics and are feeling completely recovered, but they still take care of themselves with naturopathy and diet.)

Some comments these two women made that stuck with me:

Anna: "Being stubborn is good. You need to be stubborn to beat Lyme."

Malia: "It's not a few little things, it's a hundred little things you need to do to get through this treatment. But I kicked Lyme's ass.... And you all know that the phone gets very heavy when you have Lyme, but we need to learn how to pick it up ask for help."

It changed my thinking to learn Malia was on antibiotics for five years, and now she's in remission. As I approach the four year mark of antibiotics, and even with all the progress I've made, I've had some moments in the past month when I've thought "Will I be on antibiotics for the rest of my life? What if I just stop making progress and I'm stuck in this half-better, half-sick state, and I never get a full night's sleep again?"

Hearing that it took someone five years changed that. So what if I'm not 100% yet? It doesn't mean I won't get there if I keep trying.

A NEW APPROACH TO INSOMNIA

2011-05-05T06:50:00.000-07:00

As I mentioned in my last post, times have been a little tough here at Lyme Story. (To wit, I am writing this post on six hours of sleep, which, more often than not, is all the sleep I get.) After years of antibiotics almost all my energy has returned, but my other big Lyme symptom, insomnia, has not improved. Over the past four years I've gone through a cycle of insomnia every few weeks-- sometimes it comes on after a couple months' absense, sometimes ten days, sometimes three weeks. I can usually get over it in a few days by adjusting my supplements. Perhaps I need more vitamin C, or to take monolaurin to help with the viral load that accompanies Lyme, or even to increase my antibiotics. Until now, I've always gotten back to solid sleep by making these adjustments.

But starting three months ago the insomnia has been stickier than that. No matter how I change things around, the insomnia comes back after a day or two. So I went to see Dr. Ross yesterday and told him how badly I was doing, not sure if he would have any new ideas. To my relief, he did. He had just attended a conference on the weekend and heard a lecture by Dr. Ritchie Shoemaker.

Shoemaker has an entirely different approach to chronic Lyme and Dr. Ross said he wants to try it on me and his other patients who are stuck in their treatment. (I am ready to admit that right now I'm stuck!) It's not about killing the Lyme bacteria, but about reigning in the other reactions the body has to Lyme disease. To summarize Dr. Ross's explanation:

1.Chronic inflammation: Lyme creates inflammation, and the inflammation creates cytokines, and the cytokines create oxidizing agents, and the oxidizing agents create cytokines, and the cytokines create oxidixing agents....

2. Toxicity: Is the liver strong enough to get toxins out of the body? If not, the toxins can enter the brain, effect the hypothalmus and interfere with sleep.

It turns out I am doing pretty much all the basic first steps toward controll inflammation in the digestive tract, where the biggest problems can be. (I am taking tumeric, Vitamin A 5,000 iu's or more, Vitamin D 1,000 iu's, I am on a gluten-free and anti-yeast diet and of course I take probiotics.) That leaves one more thing to check, which is wether I have a nasal staph infection that could be causing inflammation. I will do that once Dr. Ross's office has the test kits for it. And I got a blood draw yesterday to check if my liver is strong enough to be doing its job. (This test is called HLA-DR typing.)

Meanwhile, Dr. Ross gave me a couple new supplements. If they help, I will report on that. And I decided on my own to increase my quercetin, a supplement that keeps inflammation in check. I've been taking three capsules a day, which up to now has been adequate, but maybe I just need more for whatever reason right now. I will update in the next few weeks on the outcome!

PS: Due to my lack of sleep, I haven't put in many links on this post, but Ritchie Shoemaker can be found online, and there is more info on this blog about the anti-yeast diet.

THE TIME OF CAMELS AND HORSES

2011-04-24T19:35:00.000-07:00

True confessions: the last couple months have been pretty difficult for me. I’ve been largely silent on the blog, in part because I’d rather not write when I’m down. It’s too easy to cement feelings of frustration in words, building them into sky scrapers that overshadow all the gains made, all the good times that slip so easily from my mind when I’m down.

But today I’m going to admit to how hard it’s been recently: insomnia three or four days out of the week, headaches that have all but paralyzed me, and in the middle of it all, just as a little bonus, food poisoning. Yes, there are consoling thoughts, like my worst now is still so much better than it was four years ago, and the notion that this is a herx, that it must mean this latest round of antibiotics is penetrating deep into my system, perhaps into my brain the way Dr. Ross suggested the high dose of Amoxicillin would.

It’s just that as I approach the four year mark of antibiotic treatment (this July), the question at full volume is, can it really take this long? Evidently yes.

The second question, posed by a thoughtful reader a few days ago, is are you worried about all the antibiotics? Yes. And also no, because what good does that worry do me? One thousand times greater than my worry is my gratefulness for them. Thank you, antibiotics, for making my life into something more than an empty shell, my body into something more than a 130-lb prison!

And yet it’s been just plain hard these past two months. It’s felt like a prison again, although a more mobile one. The insomnia is horrible, and the worst is the time it takes up. Contrary to what you might thing, not sleeping takes time. So much time lying in bed, trying this or that combination of supplements, getting up to do a heparin injection, stopping on my way back to use the bathroom, lying down again, not sleeping, putting on headphones to listen to books on CD in case that will lull me to sleep, realizing twenty minutes later that it hasn’t and so deciding it’s now time to try some vitamin B, then fifteen minutes later more vitamin C, and then another quarter hour later the herbal drops the naturopath gave me last week.

All this while the Poet is in the bedroom with me, in various stages of sleep. I reach for all my pill bottles as silently as possible, but it hardly matters. Pills rattle, bottle tops squeak as I open them. Vitamin C fizzes as I mix it in water. The discman clicks and whirs when I hit play. The Poet often snores through it, but when my noise wakes him up I feel terrible.

So Saturday morning went, from six a.m. on. He was lying in bed reading, and I was busy not sleeping, having coaxed my body into slumber after midnight the night before. I didn’t know the Poet was hoping to read himself to sleep. I thought he was just reading, not minding my little noises that echoed all over our little room, until after an hour he said something.

By noon, when we had been up and dressed for quite some time, and pretending to ourselves we didn’t feel quite as crabby as we did, we started squabbling. But we’ve grown by leaps and bounds in this situation, and a full-blown argument did not ensue. Hooray for us!

And yet as we worked our way through our differences, heading towards reconciliation, I broke down and cried. It’s got to be tough for him, surrounded by this illness all the time. And yet this is where it gets tough for me. After all, I feel I’m about 40% an interesting, energetic person and 60% Lyme disease, percentages varying from day to day, of course. And how attractive can that be? I know there are so many women out there, and I worry the Poet will just get tired of me, or tired of my noise that keeps him awake, and say enough.

“I never imagined,” I said, “that this treatment would take so long, and that it would be this awful even when it's been almost four years. If I had known, wouldn’t have asked you to come along with me.” The tears slid down my cheeks as I talked.

“Oh sweetie,” he said. “I’m glad I came along with you. I don’t ever regret it, not even today. You’re such a rare, rare person. Nothing else matters.” Of every compliment he’s ever given me, this one meant the most. This is the one I will always remember.

“Sometimes,” I told him after kisses and a few more tears, “I worry that I’ll never get better.”

“Don’t think that, baby. You know how things have ups and downs,” he told me. “Illness is that way. Lots of things are that way. When people are working hard to lose weight, they have times when they gain a few pounds. And in the Egyptian revolution, there was a day when the enemy sent camels and horses into Tahrir Square. How crazy was that! So maybe this is your time of camels and horses. You just have to stand your ground and keep fighting, and eventually you’ll get Mubarak to stand down.”

So I’ve been telling myself since then. My time of camels and horses. I can hang tough, especially with a poet in my corner when it matters most.

THE ANTI-YEAST DIET DAY 60

2011-03-08T07:03:00.001-08:00

Back in early January I started the anti-yeast diet for what I thought would be two weeks. I'm still on it two months later and intend to stay on it for as long as I can.

It is the best diet I've done in my life. As soon as I started, I was sleeping nine and ten hour per day, which, given my chronic battles with insomnia, felt like manna from heaven. But the best part was what it did for my concentration.

Brain fog was one of those things I didn't know I had until it was gone. I never had the outsized brain fog I've read about-- forgetting words, losing my way when driving, etc. But I did have times when I just couldn't concentrate very well. Even though most of my physical energy had returned to me, it was hard to keep working (writing) throughout the day because my thoughts would get slow and mushy at times.

That is gone on the anti-yeast diet. And so, despite a few difficult days in the middle (more on that in the next post) I'm sticking with it.

1:41 A.M.

2011-02-04T01:58:00.000-08:00

The Poet and I went out for dinner to the Japanese place that serves brown rice. Both of us had cooked salmon with brown rice, although I could only eat about 1/4 of the rice because they had put soy sauce on parts of it. I was still hungry when we got home, and had little snacks all night-- fried tofu with miso, popcorn cooked in ghee, avocado, a piece of cheese. I finally stopped feeling hungry, was exhausted and fell asleep by 10pm.

12:45 and I was awake again, hungry.

Now the thing about this diet is that it does make me very hungry, and I have lost some weight on it, which was definitely not my goal. I'm eating as many high-fat foods as I can manage so I can keep my weight up. (The Poet is skipping most of the high-fat stuff and losing weight, but that is what he wants).

But what is real hunger and what is the hunger of the yeast? Because I've realized in the past month that these are two different things.

And then there is the third kind of hunger, which is when I need one of my supplements, or I've forgotten to take a round of pills, I can sometimes feel hungry too, even if I've had enough to eat. It sounds crazy, but this is how my body tries to remind me to take those pills I forgot. (Doesn't always work-- sometimes I just end up eating more and not realizing I should be taking pills.)

So I reviewed if I'd taken all my pills: yes. I then tried taking some Vitamin C, and then my charcoal, although it was early in the night for that. Lay back down again, still hungry, not falling asleep.

The Poet, fast asleep, made this panicky noise he makes sometimes when he's sleeping-- a sort of half-cry of fear, half-wimper. I always assume he's reliving something terrible from his childhood at those moments, and I try to get my arms around him as fast as I can. So I jumped from my bed and into his, put my arms around him, he clung to me, snuggled around me, turned over and went back to sleep. Or maybe he never woke up. So I kept holding him, and thought, OK, I'll lie here and fall asleep. Nothing helps me sleep better than lying next to him (assuming he's not kicking me, which he does half the time, which is why I sleep in a different bed).

Fifteen minutes later and the Poet is snoring, and I am still HUNGRY!

So I decide it is real hunger and get up. The clock says 1:41. How can this be? I moved around very little today, due to exhastion I attributed to yeast die-off. I ate a big bowl of popcorn, some avocado slices and cheese right before I went to bed. It makes no sense to eat in the middle of the night like this, but if I don't sleep, tomorrow will be ruined for working as well.

So here I am. I've eaten yogurt, quinoa, carrots (yes, carrots) and cashew butter. Still feel a little hungry, but I think I will be able to sleep. Tomorrow I will give in and cut open the kabocha and steam it up. I can have it Saturday for breakfast. Four days of extreme diet is enough.

ANTI-YEAST DIET DAY 27: PARING IT DOWN

2011-02-03T12:25:00.001-08:00

Over the past two days, I realized that my anti-yeast diet has been flawed.

That is not to say the diet wasn't working. It was working. I was getting benefits from it. But was I implementing the diet the maximum extent possible? I was not.

The culprits were kabocha squash, sweet potatoes and lemon juice. I thought these things were ok because my naturopath Nesreen told me I could eat no fruit, but any vegetable was fine, and I could have lemon.

I understood this to mean lemon juice was good, anti-yeast-wise. I was having a lot of lemon juice, filling an eight ounce glass with half lemon juice, half water, and drinking that twice a day. I would drink it at the end of lunch and dinner, when despite all that I'd eaten I still felt hungry. I thought the lemon juice must have been doing something kill off the yeast.

But what Nesreen really meant was I could get away with a little lemon here and there, in salad dressing, etc. Downing four ounces of lemon juice at one sitting was, I've now concluded, actually feeding the yeast.

Since Tuesday night, I've cut out lemon and also sweet potatoes and squash. I went to bed hungry, despite having eaten a good dinner plus popcorn after, which usually fills me up. I woke at 4 a.m. starving, ate yogurt with brown rice and beans and went back to sleep still feeling starving.

All yesterday morning I was so hungry I could barely concentrate on my work. I had snacks and then lunch, and when I was still hungry after that, I decided it must be the yeast screaming out for lemon juice, a carrot, anything the least bit sweet.

I was way too tense to sleep, started crying while I listened to a BBC report of the events in Egypt, and decided I should go for a walk. It was a sunny day, and path along our corner of Lake Union, underneath the soaring Aurora Bridge, was as gorgeous as ever. As I walked, I told my body to calm down, I took long slow breaths whenever I remembered, and I thought about my feet, which always, for some strange reason, eases tension. By the time I got home I wasn't feeling hungry anymore. I took my Vitamin C and slept for an hour, woke up feeling like I'd crossed a bridge into the land of calmness.

By the evening, I had the tell-tale die-off headache. I'd starved out a stubborn hoard of yeast.

No more lemon for me. I will see if I can make it a few more days without squash or sweet potatoes either. I know these things are low on the glycemic index, so I was telling myself they were ok. But I looked on line yesterday for more information on this diet. As usual, the internet is full of conflicting opions, but one website definitely said no sweet potatoes, no carrots, no corn.

Does this sound easy? It does not. Do I really, really want to eat some squash? Yes, I do.

I'm telling myself I can do anything for a few days, anything if it helps me get over Lyme.

THE ANTI-YEAST DIET DAY 25

2011-02-01T19:30:00.000-08:00

The two week mark came and went, and I am still on this diet. I have quite a few motives for staying on, one of which is to support the The Poet, who is on a diet that excludes everything mine does and quite a bit more. On the days when I wanted to quit, the thought of bringing and apple into the apartment made me feel so guilty I couldn't do it.

But an even bigger motive are the results. I am still sleeping nine or ten hours a day, still have better concentration, and at about the two week mark I noticed my lymph felt better.

Poor lymph drainage has plagued me since I've been on the antibiotics for Lyme, and I often felt as if it were getting worse than ever. If I hadn't exercised enough, and in the right way, to drain my lymph, I couldn't sleep, and even then eight horizontal hours were difficult. I took to sleeping a chair for part of the night, or I would wake up with my head and armpits so congested (yes, my armpits can get congested) that I couldn't get back to sleep if I didn't get up and flap my arms around like a chicken.

The Poet once woke up in the middle of the night and saw me doing this and said "Heaven save me!" But I digress....

Funny how there are some things you don't miss when they're gone, don't even notice that they're gone when they're gone. My lymph problems were one of them. It took me more than a few days to realize I didn't need to do my arm weights for twenty minutes in the afternoon in order to sleep at night, that I was waking up in the early hours, taking my pills and going right back to sleep without even thinking about my lymph.

I still feel my sinuses draining from time to time, but not constantly and at an alarming rate the way it was three weeks ago. I'd alway attributed this to the pressure on my lymph system from the Lyme die-off, but now it's clear the yeast was a big part of it. I thought I had no yeast problems. I did.

I had a few days that were rough, right around the two-week mark-- headaches, difficulty sleeping, and I was tired and cranky after I exercised. I went to Nesreen and she put me on a B-12 supplement (Perque B-12) and that did the trick. I'm sleeping again, I'm running for miles and feeling good afterwards. I'm happy again.

So for now, I'm staying on this crazy diet. I've even gotten used to it. Sure, I'd like an apple, but I'm no longer pining away for one, or thinking endlessly about blueberries and mangoes. Yogurt and purple cabbage and sweet potatoes are interesting enough. It helps that Nesreen gave me permission to have dark chocolate again-- not the one I used to eat, but the 91% cacao bar made by Theo (the chocolate factory in my neighborhood!). It tastes sweet, and about one square centimeter every other day is all I can handle. That's how food virtuous I've become.

But mostly around here, we're not thinking too much about our tandem diets. We've been watching and reading and talking non-stop about what's going on in Egypt. The Poet is Egyptian, and he has been bursting with wonder, pride, excitement, impatience and joy this past week. Leave, Mubarak, leave!

RANT: PLEASE DON'T STAND SO CLOSE TO ME

2011-01-16T21:55:00.000-08:00

Why does anyone douse themselves with perfume before they go the gym???? And why do they then chose to use the stair stepper next to mine, forcing me to breathe in the said perfume until I finally abandon my beloved, addictive exercise machine for the lowly stationary bicycle????

Why do people not know that there are many people in the world allergic to perfume??? And that the others who aren't allergic to perfume do not want to smell it from two exercise machines away???

AND NOW FOR A TREAT WE'LL HAVE, UM, NOTHING, also known as THE ANTI-YEAST DIET

2011-01-15T15:45:00.000-08:00

Today is day eight of the anti-candida diet that my naturopath Nesreen put me on. Yeast, or candida, is a fungus present in everyone's digestive system that thrives on simple sugars. So for this diet you can't eat refined flour, sugar, juice, maple syrup, or even fruit. And also no kombucha tea, no soy sauce, and no unfiltered vinegar.

According to my doctor, Dr. Martin Ross, Lyme Disease and yeast reinforce each other, and being on the antibiotics harms good intestinal bacteria, giving the yeast room to multiply. That's why before Dr. Ross started me on antibiotics, he put me on an anti-yeast medication. Now I've always assumed that I'm good in the yeast department because for years, even years before my Lyme diagnosis, I ate no sugar and no white flour, and I had no yeast symptoms.

But I've always had a few sweet things, as long as I saw the nutritional value: ginger bread sweetened with molasses and honey, pomegranate juice for the antioxidants, and recently, as I've been to busy writing to bake, and the Flying Apron gluten-free, vegan, organic sustainable bakery opened a few blocks from my house, I've been relying on their muffins (sweetened with maple syrup) to get me through most days. Actually, the amount of maple syrup (for the trace minerals) and frozen berries (for the antioxidants) and dark chocolate (for the antioxidants) I consumed each day was creeping up and up.

But that was OK, because I love vegetables above all else, and compared to everyone else I know, who eat cookies and ice cream and drink vodka, I am a food saint. Virtue is practically my middle name.

Or so I thought until Nesreen brought me down to earth a week ago Friday: No fruit or sweeteners for one to two weeks.

It just so happened The Poet had started a similar diet, for different reasons, a week earlier. So I went home and told him we'd do the diet together.

"That's great, sweetie, it's a really good diet," he said. "Let's do it together until the end of the month." Without thinking, I agreed.

After one week, I now know I was never, ever, a food saint before this. This no fruit thing is the toughest diet I've ever done. Before now I've stopped eating the aforementioned sugar and white flour, and wheat, and even for long stretches soy, or dairy, or chicken or eggs. None of it was hard. This is.

Without anything sweet at all, without even vinegar or soy sauce to flavor your food, time moves differently. It slows down, it feels undifferentiated. Weirdly, the savory foods I've always loved-- kale sauted with garlic, goat cheese, buckwheat noodles flavored with sesame oil and sea salt-- just aren't that exciting without the contrasting splashes of sweet throughout the day.

On the other hand, I slept really really well this week. Nine or ten hours every day. And my energy was even and steady, my concentration clear throughout the day, and yes, when I went dancing, I was spontaneous and graceful. I truly had one the of best nights for dancing I've had in a very, very long time.

So Nesreen said try one or two weeks, and The Poet said let's do it for three. As of today, I've decided to go for two weeks.

New Year's Resolution Remix

2011-01-09T15:19:00.000-08:00

If you read my last post, you know my resolution for the new year was to make my own kombucha, as soon as I returned to Seattle. I came back Thursday, feeling pretty horrific from a herx as I tried increasing my Amoxicillin from ten capsules a day to eleven (making me one capsule shy of the full dose).

This Friday morning, before my appointment with my naturopath Nesreen, and before I'd had a chance to do anything about the Kombucha Project, I opened the refridgerator for breakfast. I pulled out the yogurt and scooped some into a bowl. Then I pulled out the bottle of maple syrup I usually put on my yogurt. I was already hungry, but when I saw the maple syrup, my stomach lurched with hunger. I was a strange feeling-- as if something inside me saw the maple syrup and was yelling "gimme gimme gimme!" I poured the maple syrup on my yogurt, the way I always do, and ate it.

Meanwhile, The Poet had come back to Seattle a week earlier, seen his own doctor and started a strict detox diet. No gluten, no fruit, no tomatoes, no nuts besides almonds and pumpkin seeds, no vinegar, no dairy, no... well, it's basically chicken, fish, turkey, vegetables and quinoa.... I said I would do it with him, but I wasn't really considering cutting out fruit, yogurt or maple syrup. I figured I'm virtuous enough since I never eat wheat or any refined sugar.

So I was explaining all this when I saw Nesreen later that day, even the part about the small monster inside me wanting the maple syrup. And guess what she said? I should do the diet with The Poet. Not just a symbolic giving up tomatoes and salad dressing.

"No fruit, for real?" I asked.

"No fruit, no sweeteners, no vinegar," Nesreen said. "You have yeast and you need to get rid of it. This diet will do it."

"No maple syrup?"

"Absolutely no maple syrup. For at least one week, two if you can do it."

"No grapefruit?"

"Grapefruit is a fruit! No grapefruit."

"Dark chocolate?"

"Nope."

"What about kombucha?" I asked.

Nesreens eyes widened. "No no no no! No kombucha!"

She explained that while kombucha is a probiotic, it usually contains yeast, due to the fermentation. That sediment at the bottom? Yeast.

So my resolution went out the window, only to be replaced by a harder resolution: the anti-candida diet.

While making kombucha at home sounds like fun, even hip, even glamorous (my twenty-three-year-old Manhattanite cousin was all over the kombucha idea), eating no fruit or maple syrup or vinegar is just boringly difficult. Now I really understood how disciplined The Poet was being with his diet for the past week.

Interestingly, all I could think about for the rest of Friday afternoon was how tragic it was that I couldn't eat any blueberries or frozen mangoes. Now on day three, I'm starting to get used to the all-veggie thing, but after every meal I find myself thinking "and now I'll have a piece of fruit." Or I start to make a grocery list, and the first thing that pops into my head is orange juice. And so on.

To compensate, I've been fantasizing how the anti-yeast diet will in just two weeks leave me focused when I write, speedy when I run, graceful and spontaneous on the dance floor, free of that clogged-lymph feeling and of the tight muscles and lingering tendonitis in my left calf.

And if it doesn't happen, I've promised myself a certain cardigan sweater I've been longing for, if I can make it through the whole two weeks. But then again, at the end of two weeks that first taste of dark chocolate will be its own reward.

A GOOD YEAR

2011-01-02T12:59:00.000-08:00

Time was, this part of the year had me in bed with the covers over my head as I cried myself to sleep. Christmas, my birthday, New Year's--all markers of one more year gone, one more year of nothing but illness to look back on.

But I can look back on 2010 and say it was a truly good year. The Poet and I had many happy moments together, I had two short stories accepted for publication, I danced in the Fremont Soltice Parade, I started running and riding a bike again, and I passed many content hours working on my stories and my memoir.

And yet, when people ask me how I am doing and how I spend my time, this is only part of the picture. The truth is, I still spend hours and hours a day being a Lyme patient. The routine I go through just to get to bed (Heparin injection, endless pills, several glasses of Vitamin C and Alkaseltzer Gold, plus brushing teeth, etc) takes 45 to 60 minutes! Many more minutes go by during the day taking pills, calling pharmacies, going to the doctor, getting myofascial release so my legs don't cramp up, and of course the daily nap and 90 minutes devoted to exercise so my lymph system doesn't clog up and keep me from sleeping.

It seems so crazy, almost impossible to explain-- how can I be so much better and still have so much of my time taken up in these seemingly trivial tasks that in my mind should take no time at all? Why does taking a nap and exercising each day mean I can't also spend a full day writing, or holding down an actual job?

The truth is, after three years of treatment, I still spend over half of what I consider 'work' hours on Lyme, and it's no less complicated than it was.

But now the hours when I am free from Lyme are truly mine. I'm not watching TV, or staring out the window in a daze, or sewing because it's all I have the energy for. I am strong and focused, I am zooming around. My sister-in-law, who has only known me after I got sick, said last summer when I arrived at her house on my bike, having just been swimming and now ready to babysit, it was as if she saw the real me for the first time.

Time was, on New Year's Eve I would always say the same thing: 'let this be the year, please please let this be the year I get better.' Now I now that in the coming year I will get better. I am still working with Lyme, or working my way around Lyme, but now I have other hopes for the coming year that have nothing to do with Lyme disease at all.

NEW YEAR'S RESOLUTIONS

2011-01-01T13:25:00.000-08:00

I'm generally of the opinion that you don't need a new year to tweak yourself, but this year I happen to have two big resolutions.

1. Eat Slowly Again.

I used to be a very slow eater, still on the main course while everyone else moved on to dessert. This worked out well since I don't usually eat dessert. But in the past year I've been eating faster and faster. Why? Because now that I am feeling better, I am back to trying to squeeze more out of my day, feeling the need to hurry up most of the time. And also because The Poet eats very fast, and when he's done he starts eating the food on my plate. To defend against this I've started eating fast. Life should not be this kind of competition!!! I will eat slowly again and tell The Poet to get his own food.

2. Make Kombucha

Here's one I've been resisting for some time. Yes, people have told me you can make it at home. One guy at the grocery store, who saw me buying a $3.29 bottle of the stuff went off on a monologue about how he brews it up in his bathroom. "Yuck!" I thought. "I'll just keep buying it."

For those who don't know: kombucha is this fermented drink full probiotics. You can get it at Whole Foods or you organic co-op, but it's pricey. And it disappeared for a few months this summer after the Bureau of Alcohol, Tobacco and Firearms advised stores to pull it from the shelves because the alcohol content (natural result of the fermentation process) might possibly have been above the legal 5%.

Kombucha fans know how expensive a habit it is, and hard core fans might suspect it's just not as good as it used to before it took its hiatus and came back in government regulated form.

Meanwhile, the massive doses of Amoxicillin I'm on are doing a number on my digestion. I've been going through $50 bottles of probiotics like they're bowls of popcorn. Kombucha also helps, but how can I afford to drink it every day?

So when I saw an article in the Washington Post on how easy it is to brew Kombucha at home, I knew it was time. I'm in DC now visiting the family, but I'm back in Seattle next week, and day 1 at home is day 1 for Kombucha brewing. I'll keep you posted.

LIFE AS A PETRI DISH

2010-10-25T14:59:00.000-07:00

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

2010-10-02T17:48:00.000-07:00

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?

2010-10-02T17:36:00.000-07:00

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?

2010-09-06T11:53:00.000-07:00

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

2010-07-13T12:11:00.000-07:00

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

2010-06-22T11:05:00.000-07:00

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

2010-06-21T11:56:00.000-07:00

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?

2010-05-24T14:23:00.001-07:00

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

2010-05-12T10:56:00.000-07:00

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

2010-03-03T08:08:00.000-08:00

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

2010-03-02T10:24:00.000-08:00

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

2010-02-26T13:58:00.001-08:00

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

2010-02-20T17:35:00.000-08:00

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

2010-02-04T22:07:00.000-08:00

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

2010-01-21T10:04:00.000-08:00

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.

A LITTLE CLOSER TO FREE

2009-12-19T06:13:00.000-08:00

I have been home almost a week, and have written every day. I'm up to 40 pages now.

I've also added some cautious jogging to my usual Capitol steps workout, and haven't worsened my tendonitis. It's I sign I've broken through a big barrier in the eleven month struggle with that.

I had a moment yesterday when I was feeling so strong and healthy, that I thought "I feel right now like I don't have Lyme at all, it might not be long now until it's true." Then my eye caught the little table next to my bed, its surface crammed with the various supplements I take throughout the day, and I remembered I still need them all to feel as good as I do.

Oh well, it was a nice thought while it lasted!

Two days ago I added Biaxin as the 4th medicine in my Lyme protocol (in addition to Rocephin, Flagyl, Minocycline). Since the Minocycline makes me sleepy, I assumed the Biaxin would, too. It did the first night. Last night again I took them both right before bed, with a heparin injection, and bingo, I was up until 3:30 am, with my heart pounding loud and fast.

So I'm a little tired today, trying to plan the best strategy for writing at least 1200 words, my minimum daily goal.

No jogging today, we have a foot of snow and it's still coming down hard.

FROM HOME TO HOME

2009-12-12T13:03:00.000-08:00

Well, the Poet boarded an airplane for Egypt an hour ago, and I am sitting in the airport (where there is free wi-fi) before my flight back to DC. We will be away from each other for a month.

The repeat question of the past two weeks has been, "why aren't you going to Cairo with him?" For now, a trip to Egypt would be too much, much too much. At last check planes across the country did me in, so traveling for 24 hours, to get somewhere full of automobile exhaust and people smoking in every indoor location would be too much for me. There may be a trip in the future, however, one that features a few short days in Cairo and more time in a less poluted part of Egypt. That is feeling more a more possible as time passes.

I have had a morning of good signs. First, I woke realizing that I had failed to take all my bedtime supplements last night, the ones that get me to sleep. I had slept through the night just fine without them!

After the injection and seeing the Poet off, I headed to the gym, where I jumped on the beloved stair climbing machine at the gym and stayed on it for half an hour, going at 80 steps per minute the whole time, with the exception of a couple minutes of "sprints" at 100 steps per minute. Less than a month ago, 60 steps per minute was my maximum speed.

I still long for the day when I will be able to dance again. It was January of 2009 that I had to stop dancing due to Lyme-related tendonitis. It has been a long, painstaking 11 months, with much of my time eaten up by myofascial release and physical therapy appointments. But the past two weeks I have been able to walk up the hill to my house without my calves spasming.

(True confessions: I have spent a good 10 months going up the hill backwards so as not to aggravate my tendonitis. Who is the neighborhood crazy lady? Moi.)

So I head back to DC feeling closer and closer to signing up for another dance class, and closer the end of Lyme Disease. Again, the hope is cautious, but it is real.

GOALS FOR THE MONTH

Over the past week the Poet and I have been talking about my writing. For the past 18 months I have been happy with piecemeal projects, as my energy and schedule (at the mercy of naps and doctors appointments) would allow. This has meant a book-length project from a few years ago is still on the shelf, blogging is sporadic, and short-stories get started, even completed, but rarely polished. Still, writing anything is progress at all!

This month I will have no appointments, so I will have large stretches of free time. What else should I do but write? The Poet knows I have been wanting to get back to my young adult's fanstasy novel, but he made a different suggestion: write something easier.

His idea was another novel, which I rejected flat out. Not another project, while I have so many others half-completed! Besides, he was really suggesting I write the type of novel that he wants to write. (Advice is always biased!) Mulling it over we agreed the fanstasy novel is still too big a project for me right now, but a memoir would be a realistic goal.

So I head to DC with the promise to myself that I will write 3-4 pages per day of a memoir.
Writing about myself is not my first choice, but it is much easier to write about material I don't have to make up. And I would like the satisfaction of taking on a larger project, perhaps one that I can take a little more lightly than fiction.

The plane is boarding. I'll post this now. (Thank you Google for free wi-fi at the airport!)

KEEPING A CLEAR HEAD

2009-12-05T17:11:00.001-08:00

I have turned over a new leaf this past week, getting up on the early side and going to the gym before my appointments. (This isn't that early, mind you. On my first day I was greeted by Molly, my cheery yoga instructor, with, "What are you doing here mid-morning?" So much for my idea of the crack of dawn!)

This usually puts me on the stair master about 30 minutes after the Poet has given me my Rocephin injection, and soon after my morning Minocycline so I imagine I am pumping the medicine through all the hard-to-reach tissues of my body. Sometimes my body feels a little heavy-herxy while I'm going up the moving stairs, but it doesn't slow me down.

It's really nice to get the jump start to my system, and also to have my exercise over for the day. The thing I like best, however, is that for the rest of the day I have none of the fuzzy-headed feeling I've been experiencing when I try to write.

Today, however, I slept an extra hour, skipped the gym, and went off to meet
my writing buddy Brian at the all-raw-vegan-vegetarian-not-even-eggs-in-site Chaco Canyon Cafe. (Since Brian has trouble getting himself to sit down just write his book, we meet once a week at a cafe with our laptops and write). And there was the brain fog again. I forced myself to work through it, but I realized I'd been feeling a little slow and sleepy every since the Minocyclene at breakfast.

So my plan from now on is to take Mino with breakfast if I am heading to the gym right away. Otherwise, I'll put it off until lunch, which is always followed by a nap, and see if my brain has an easier time functioning this way.

WHATEVER HAPPENED TO THE MALM and OTHER STORIES

2009-12-01T17:43:00.000-08:00

The past month has gone by without a moment to post anything here. One reason is that I am trying (although not necessarily succeeding) to focus on other writing.
I was enrolled in a class on plot structure at the Richard Hugo House, Seattle’s non-profit writing center. When I signed up, I thought it would jump-start my fiction writing, which has been slowly cooking on back burners over the past year. Unfortunately the class went by mostly while I was in the MALM-induced limbo. The apartment was a wreck, and I had nowhere to sit down and write. (I still enjoyed the reading assignments and getting feedback on a story I’d written months before.)

Only in my last week of class did I get the bedroom rearranged with my old excuse for a dresser and the fabulous new writing desk. I’ve had a few good days writing there, now that the class is over.

Meanwhile Ghusun decided she wanted to buy the MALM from me, at the bargain rate of $70. This thing was a tar baby to the very end. Ghusun loaded the drawers into her VW beetle, but we couldn’t get the frame to fit into my car or the Poet’s. (She and I discovered this only after we had carried it down two flights of stairs and had it sitting out on the sidewalk. It was a sunny day, but since we live in Seattle we were convinced that it would start to rain on the MALM at any minute.) The Poet jumped into the chaos on his lunch break to help get the thing back inside, then a few days later drove it over to Ghusun’s condo, by what he and Ghusun called “the Arab method”: seventy-five percent of it sticking out of his car trunk, the whole arrangement tied together by an extension cord in lieu of rope.

When my prescriptions came up for renewal, two of my main medications, preservative-free Heparin and Rocephin, were temporarily unavailable from the manufacturer. I spent most of a week’s free time scrambling around getting my Rocephin from a different pharmacy, and then ordering the blood-thinner Lovenox from Canada, as a substitute for Heparin. Even at Canadian bargain rates Lovenox is about $650 a month, whereas the equivalent amount of Heparin bought in the U.S. is $250. My insurance covers the Lovenox, but it won’t cover the Heparin. Go figure!

Once I was over the stress of wondering whether I would have any medicine, David arrived for Thanksgiving week. Since the Poet had to work, I ran Camp Naomi for the first three days. David is almost nine years old and arrived still not knowing how to ride a bike. (???!!!!) By the time he left I had him riding all over the place.

Throughout it all I’ve been going daily to the gym to work up a sweat on the stair climbing machine and the rowing machine. It boosts the immune system and makes me sleep soundly every night. Hooray for strength at long last! Hooray for exercise! This is the corner I’ve been waiting and waiting to turn… I didn’t know that by the time I’d got here, there would be yet other corners I’ve gotten myself on the wrong side of. It’s turning out to be more of a five tetrahedra compound I’m trying to get myself around.

My calf is starting to feel a little better, but now my low back is hurting. When will I dance again? It’s not clear.

Robyn, my physical therapist, says she thinks the two are related, and as we begin to clear up the tendonosis through myofascial release the back issues my calves/Achilles were compensating for are now coming to light. And so it goes on…

A GOOD DAY

2009-11-29T22:39:00.000-08:00

From 3 pm until now I've been working on a short story, with only short breaks to take medicine and eat dinner. It's first time since the onset of this illness that I've had the time and energy to sustain writing for such a long period of time. (And now my brain is a bit fried, sorry if these sentences don't make much sense.)

I have been absent from the blog for a long time now, I'm hoping I'll catch up in the next few days.

MALM 2, Naomi 0

2009-11-05T22:03:00.001-08:00

I put up a good fight, but in the end the dresser got the better of me.

On the second attempt to put my clothes in the thing I was still smelling the fumes, less of them, but enough to make me slightly ill and extremely irritable.

My recommendation to those with chemical sensitivity: don't buy a MALM dresser. I've had no trouble with anything else I've ever bought from IKEA, so I don't want to knock them. And anything from the MALM line that doesn't have drawers is probably going to be fine. It was the inside of the drawers that were invincible.

Instead of shoving the thing out the window in frustration, we've decided to put it in David's room. David will be here soon for Thanksgiving and he has no dresser so that is a useful thing to do with it.

As for a new dresser for myself, I am giving up for the time being. I feel too traumatized by the MALM to risk myself again on another that will probably just break my heart in the end.

Fortunately I never got rid of my old dresser (if it can be called that). It is truly the ugliest piece of furniture I own, perhaps the ugliest I have ever seen, but it doesn't give off sickening fumes and for that I am grateful. I put my clothes back in it today and it felt nice to have them organized again.

MESSING WITH THE MALM

2009-11-04T10:09:00.000-08:00

It’s been 10 days since my last post, and my readers must have been waking up each morning with one question on their minds: what happened to Naomi? Was she swallowed up by the MALM, or did she successfully cook it? Will her apartment ever rise out the chaos it has become?

Before I answer the question, I will remind my audience of where I left off. Unable to stay in the same room (i.e. my bedroom) with the new dresser that was making me ill from toxic offgassing, I decided to fight back by blasting it with space heaters until the fumes cooked off. At last report, I’d burned out the motor of one space heater, then decided that was good enough, I was going to put my clothes in the dresser.

HA HA HA HA HA HA HA HA HA HA HA HA HA HA! O how sick I felt while attempting to line the drawers with eco-friendly, unbleached parchment paper. Sick and irritable and tired of sleeping on the couch and having my clothes piled up on my bed and in the hallway. I just couldn’t do it anymore. I wanted to throw the MALM out the window and watch it splinter into useless pieces on the sidewalk. It hardly mattered that it would never fit through my miserable little window.

For twenty four hours I was down. “What did I do to anger the gods?” I wailed. “Why me?” And then I woke the next day with a new outlook. “I can do this,” I realized. “Sleep on the couch? Pah! Live for another ten days in chaos, what’s that to one who has been through the ravages of seven years misdiagnosed with chronic fatigue syndrome, what’s that to one who has braved two years of the harshest double-dosed antibiotics, who has faced a daily injection into her butt for the past six months? Bring it!”

I set the second space heater on the dresser. My plan was simple: one drawer per day. If twenty four hours in close proximity to raging-hot electric coils couldn’t cook the fumes out of a MALM drawer, then I would honorably concede the dresser was the greater man.

Day one: in the face of intense tropical temperatures the middle drawer spews its fumes into the atmosphere, leaving me choking and gagging with each foray into the bedroom. By morning the smell had changed to a warm, woody scent with only faintest traces of a chemical overlay. I keep the heat on two more hours before switching to the next drawer.

Day two: my mother reminds me that drawers can be removed, thus making it easier to point the space heater directly at the little buggers. The battle intensifies.

Day four: all the big drawers have undergone the Treatment, it’s just the top drawers left.

Day five: in the early morning I enter the bedroom to find it cool and dark, Poet wrapped tightly under his quilt. What happened to the heater’s warm glow? What’s going on?

The second space heater has died.

MALM 2, Naomi 0

Or, if you look at it differently:

MALM 2, Naomi 5.

The only problem was, I was running out of space heaters, fast.

The source for space heaters is Fred Meyer. Who doesn’t love this box store, where you can also buy ice cream makers and lottery tickets? Each trip to Fred Meyer is a chance to win the Mega Millions jackpot. Let’s go.

Three trips later I:

a) hadn’t won the jackpot and

b) had returned more defective space heaters than I care to go into detail about.

The last heater I bought, the most expensive Fred Meyer had to offer, was going to work, I was sure. It looked beautiful coming out of the box, but wait, what was the big red tag on the cord? It read “Caution: this product has been covered in a protective coating to safeguard it during shipping. Upon initial use of the appliance the coating will dissipate into the air and let off an unpleasant odor.”

At that point, I began to believe in fate. Not destiny, but fate. It was my fate, I decided, to sleep on the couch into eternity, while my boyfriend slept in the bedroom amidst toxic fumes and the continuous roar of the air purifier, an endless battle of mid-weight household appliances, with IKEA furniture thrown in just for fun. Sisyfus would understand.

I accepted fate. I plugged the heater in. I set it on high. If my air purifier went up to eleven, you know I’d have put it there.

The bedroom stank. So much that the Poet even noticed the smell and agreed an open window was a good thing. Things stayed that way, in a time that was beyond time, that stretched toward all horizons, infinity, contained in a messy bedroom. I decided not to care, I decided I would live my life as if this were forever. (I really can’t tell you how many days it was, I just stopped counting.)

And yesterday the last of the fumes softly slipped into the air purifier and were gone.

As I write this, I am sitting at my new desk with my new computer. I am a foot away from the MALM. I am in the bedroom. The air purifier is on low, so low you wouldn’t know it’s running if I hadn’t told you, and I am breathing easy.

I haven’t put my clothes into the drawers yet, but one of these days I will, maybe even tomorrow.

MAKING OMLETTES

2009-10-25T21:51:00.000-07:00

It's official. After running the space heater in the bedroom at full blast for three straight days, the thing has died.

As Lenin famously said about cooking, sacrifices must be made. In my case it was the source of warmth for our bedroom. Fortunately, the second heater (which is so bright we can't use it when we're sleeping) still works, so I have a way to keep cooking my dresser.

I've kept at throughout the day (day #4) and am about to declare the thing done. The outside doesn't smell at all. With drawers shut I can be right next to it and breathe easily.

I only get a wiff of the fumes if I stick my nose right down into an open drawer and really breathe in. And I'm so tired of keeping my clothes in laundry baskets in the living room that I'm ready to put aside my paranoia aside about the chemical smell seeping into my t-shirts while they sit the drawers, and just put my clothes in the damn thing at this point.

If my underwear does end up smelling like the chemical coating on a flimsy IKEA dresser, I'll take them out, wash them, and start the process over. For now, I'm ready to be done.

On the upside, with the aid of the air purifier running on high, I've been able to sleep in my bed for the past two nights. After the previous nights on the sofa it feels truly luxurious to stretch out on a mattress, even there is a pile of transient sweaters next my pillow.

In the end this is all about getting all my clothes and possessions rearranged into a paragon of efficient space management, thus allowing me to have a functioning desk with a functioning desktop computer on it, that is to say, a space of my own to write. For Virginia Wolfe it was a room of one's own, but for me it is coming down to a desk of my own. I envision this as not just opening up a space in the apartment, but also a space in my brain, somewhere I can go physically that will allow thoughts to develop and stories to gestate.

COOKING THE DRESSER

2009-10-23T18:30:00.001-07:00

This is how you cook a dresser: with heat lamps. It gets the chemical fumes to intensify, which means you are baking them off. (You must read the previous post for this to even begin to make sense.)

In the case of my MALM, the smell is worst inside the drawers, so I am pointing the heat lamp at them one by one. I've been getting a little anxious about a) whether this will work, and b) when will it be over?

The chemicals are saturating the air, so at some level it is working. (My head started to hurt a little even while I was taking this picture.) But will it be enough that eventually I wont mind being in the same room as the dresser? And what about putting my clothes in it? Will they start to smell like chemical fumes as well?

For the past two days I've been staying out of tbe bedroom as much as I can, and sleeping on the couch. I miss my bed! Tonight I will try closing all the drawers, turning down the heat and seeing if I can sleep with the air purifier running.

IT'S ALL FINE

2009-10-21T21:33:00.000-07:00

As I have made only passing reference to in this blog, along with chronic Lyme comes chemical sensitivity. For those who don’t know, chemical sensitivity means you feel irritated, exhausted or choked for breath around chemicals, especially airborne ones. By chemicals I am referring to molecularly altered, toxic substances that for some reason we, as a human race, have decided are a good thing to incorporate into every dimension of our existence.

In the world outside my house people are wearing perfume and hair gel, spraying innocent apples with pesticides and antibiotics, and spewing exhaust fumes into the air as they idle their engines for the sole purpose of eating their lunches while sitting in their drivers’ seats, parked, on beautiful 70 degree days, often at public parks WHERE THERE HAPPEN TO BE PLENTY OF BENCHES! (They are no doubt enjoying their car air fresheners.)

I am member of NRDC and the Sierra Club who will someday rule the world and ban all such disgusting chemicals from our lives, but on an immediate level there is not a whole lot a person can do about these things. I once approached someone idling her engine in the parking lot of a city park and asked her, quite politely, if she would mind turning off her engine. I got the finger.

I have since taken up avoidance tactics. When I am out in the world and a wave of airborne chemicals comes toward me I hold my breath and get away as fast as I can.

The tiny apartment is my only real sanctuary. Here you will find no cleaning products besides Seventh Generation, nor is there new carpeting, nor mattresses laced with fire-retardant agents, nor sheets that were not fathered by pristinely organic cotton plants. The shampoo in the bathroom contains no phlalates or sodium benzates any other substance with names more than three syllables long.

And yet at times I must buy new furniture. In the past I have bought much of my furniture at the Soaring Heart Organic Futon and Mattress Store. This a store where an air filter is always running although no toxins could possibly be malingering, and whose primary means of advertisement is in the Seattle food co-op’s newsletter, in the form of a small-print 500-word diatribe about mindfulness, crowned by a cartoon of a heart with wings. Month after month, this thing, which they consider an ad, never changes. In other words, it’s the kind of store I love and wish I didn’t love so much, partly because it’s embarrassing to be associated with that mindfulness over-indulgence, and partly because their stuff is really quite expensive.

The other place I’ve come to rely on for furniture is IKEA. Because IKEA is a fairly enlightened company, it turns out. They have standards about child labor and sustainably harvested wood and recycling and so forth. This includes not putting too many chemicals in their furniture. For example their particle board is manufactured by European standards, meaning next to no formaldehyde or other toxic chemicals go into it. I have been told by an expert on chemical sensitivity never to hang around particle board that wasn’t made in Europe.

And so, on a budget yet desperate to organize an apartment slipping toward the appearance of a rodent’s lair, I turned to IKEA.

And when I say turned, I mean I spent hours pouring through the pages of the IKEA catalogue, and staring dazedly around the tiny apartment, relocating beds and book cases in my head. I bullied Ghusun into driving down to IKEA with me, twice, and we wore ourselves out in the maze, I with my tape measure and notepad and Ghusun, for reasons only she knows, determined to see everything there was to see and file it away meticulously in her head.

And now this: the furniture has been delivered, and all is assembled. The computer desk I put together myself, I’m proud to say in under four hours. On the bookcase and dresser I sprung for an assembly service. The cute college kid who puts these things together arrived today and did both in about five minutes. They look great, and the dresser, the MALM, has been giving off noxious fumes all afternoon.

I first noticed when I was taking my nap. “Oh it’s nothing, a little an initial smell since all the pieces just came out of the box,” I told myself. But when I woke up it bothered me more and more, so that while putting my clothes into the dresser I found myself fighting the urge to run out of the house. The thing was undeniably making me sick.

I went into the living room where I could relax and possibly brainstorm. I pawed through the IKEA catalogue once more, and reviewed the money I’d spent on this thing: MALM $140, delivery $100, assembly $66. I could never get that money back from a craigslist sale. I also checked out the pure, noble, virtuous maple dresser on the Soaring Heart website: $1,200 and change, and not as big as the MALM from the looks of it.

Then I put on my jacket and ran out of the house. Once I had some fresh air in my lungs I did what I always do when I am panicking: I called the Poet first, then my mom.

“Well, why don’t you try to cook the smell out?” my mom said. We had done this before in my first months in Seattle, when I had briefly rented an apartment that turned out to be full of toxic fumes. Paint and other minor fumes can be cooked out by cranking up the heat and later airing things out, we learned. More substantive outgassers, i.e. new carpets made from petroleum derivatives, will keep letting off fumes for months, no matter how high you get the heat or how many fans you run.

So I got back home and turned up the heat in the bedroom. The Poet called me back and before I could get into full panic said why didn’t I just meet him at the bar and then we’d go out to dinner. “We’ll work it out,” he kept cutting in before I had a chance to get the details across about the heater running simultaneously with the air filter, the clothes piled all over my bed, the old dresser fighting for floor space with my yet-to-be-stashed file boxes and the reason why I had to sleep on the living room sofa tonight.

Once we were home he deliberately remained oblivious, then toddled off to bed where I found him already quilted and drifting off amidst the chaos, murmuring to me “this is fine, baby, don’t worry, it’s all fine.”

A MESSAGE FROM MY MEDICATION

2009-10-15T22:33:00.000-07:00

Everytime I see this I think "No, you flip off!" And then I think, I love you, Rocephin, what did I do to deserve those words from you? What could you possibly have against me? It must be one of those "fuck you"s that tough-guy Soprano-mafioso-macho types use affectionately with their macho friends. The sort of term of endearment that I, as a WASP, have never encountered in real life. Until now.

So flip off, my darling Rocephin, flip off.

AN HOUR AWAY

2009-10-14T21:10:00.000-07:00

My mom gave me a membership to the Seattle Art Museum for Christmas and so far this year I have not used it once. This afternoon I made it there for an hour. The Andrew Wyeth exhibit is about to close, which made it easier to push all the things on my to-do list aside and ged down there at last. I would have kicked myself for a long time if I'd missed those paintings.

The curator gave a 20 minute talk about this painting, Brown Swiss. She seemed to know everything about Wyeth, which was interesting enough, but the experience of standing in front of the one painting for 20 minutes made me look and look and look at it, until I was in a state of marvel. The bold shadows across the field, the way he creates the hills with just inferences, the symmetry between the pond and the shadows across the earth. I could go on and on, but here's my favorite thing: at first glance the house's reflection in the pond is the mirror image, but if you keep looking you see how the perspective in the pond is slightly shifted, because the angle of the water's reflection and the angle of the viewer's gaze toward the house is different, of course!

A HAPPY DOCTOR

2009-10-02T15:00:00.000-07:00

Just back from my appointment with Dr. Martin Ross. I told him how well I am doing on Rocephin and he was genuinely excited for me-- more than I am yet. It was nice to see him laugh and smile, even if I am not quite ready to give in to jubilation.

I did dare to ask him what the end of treatment would look like. I haven't asked this question of him or any other doctor because I haven't yet in all my years of illness come even close to having that be a relevant question, but perhaps now it might be... who knows when but I might very well get there.

Dr. Ross said he keeps treating until patients feel they are 100% better, then continues for two more months to be sure the bugs are beaten down enough that the immune system can take care of them on its own.

And if people never reach 100%? I asked.

He said yes, there are some people who have to accept they have some permanent damage from Lyme. In that case he will keep treating until the patients feel they have reached a plateau, then two months past that. He then switches to a low dose of antimicrobial to help the immune system.

So I will fall into one of two categories. I have decided I will do all that I can to be in the first.

The management of my recovery can really drive me crazy. Just yesterday I had quite a few moments when I felt overcome with despair at the drudgery of my life right now. And now today I was reminded that all the little tasks that try my patience are the most important thing in my life right now.

That means redoubling my patience, sticking to the routine, and especially keeping up the exercise that is building up my strength and my immune system every day.

That said, it's time for my nap.

LESS AND LESS

2009-09-29T21:01:00.000-07:00

Since the start of the summer I have cut down most of my supplements by half or more. Half the iodine, one third the Vitamin D, one third the zinc, one third the herbs for my liver. Before I’ve cut my vitamins down and then just had to increase them again a few weeks later when my symptoms flare up, but this time that hasn’t happened.

In fact, I am feeling better and better. After four months on Rocephin, things that used to tire me simply don’t, and my energy feels steadier throughout the day. I go to the gym and push myself and instead of collapsing later, I can feel my endurance improving.

I have moments when I catch myself in the simple reassurance of the strength returning to my body, and realize I have an unquestionable feeling this strength will get me over this illness. I imagine myself free of taking pills around the clock and going to doctors, and I wonder if I dare to trust that life will come through, just this once, on the promise it holds out to me. And then it turns to a prayer: O please, let things be straightforward this time.

TASTE BUDS

2009-09-27T15:10:00.000-07:00

Carolyn Humpreys once sold me a fermented soy liquid that she considered an elixir. She had just got this brownish grayish drink in and told me I should try it for whatever problem I had at the moment. “It’s so nutritious. It stimulates your body to take care of whatever’s wrong,” she said.

My attitude towards supplements is mixed. On the one hand, the right supplement can work wonders for all sorts of problems, from headaches to insomnia to bad breath. On the other hand, once you’re up to twenty different supplements a day, the cost adds up as does the hassle of remembering to take them all at the right time. So when the prospect of taking a new supplement arises, I think twice.

In this instance, Carolyn’s enthusiasm for the soy elixir was so great that she won me over.

“The people I’ve put it on are doing really well. You might even be able to drop some of your other supplements just from being on this.”

I bought two bottles and put them in the refrigerator when I got home. When I opened one, I found the taste was a mix between old gym socks and cat piss.

Over the next week I tried to remember to take the soy stuff at the right time—or at any time. But since it was out of sight in the refrigerator, and since it tasted so disgusting, it was easy to forget. In the end I decided to accept reality: I wasn’t going to drink this stuff.

Carolyn was completely understanding at my next appointment, and took back the unopened bottle for a refund, but what to do with the opened bottle? I knew she couldn’t give me money for it, but I suggested she might have another patient who would want it—the stuff was expensive and I didn’t want it to go to waste.

“I’m not allowed to do it for health reasons,” she said. “What about the Poet?” The Poet [my boyfriend] was also Carolyn’s patient and just so happened to be out in the waiting room.

“But he doesn’t have Lyme. It can help him with ________?” I asked.

“Oh yeah,” Carolyn said. “It helps with all sorts of problems.”

I was still skeptical. “I don’t know, given the way it tastes it’s going to be hard to get him to take it.”

“You never know. Some people love the taste.”

“You’re kidding,” I said.

“No, if your body needs it, your brain can sometimes help you out. I have people who swear this tastes like chocolate. All kinds of people tell me supplements taste like chocolate.”

Feeling a bit like I was in a Life cereal ad, I followed Carolyn out to the waiting room and offered the soy beverage to the Poet.

“You might really like the way it tastes,” I said helpfully. He looked interested. We poured out a tablespoon and he put it to his lips. He swallowed.

“Well?” I said, eager to see if Carolyn’s theory was true, if this was a real elixir that would solve all the Poet’s problems, make his brain turbo charged and his body full of energy, sleeping soundly at night and waking each day full of happiness, and if that were the case, would his taste buds tell him the drink was like chocolate and cry out for more?

“Well?” I asked again.

“That’s disgusting,” The Poet said.

Carolyn nevertheless told him what a panacea it was, and since the price was right (free) he was enthusiastic about it. He even, if I recall correctly, gave me some money for it. We took it home again and he finished the bottle, and perhaps, among the other supplements he was taking, it contributed to the gain in health he had while he was going to Carolyn. Who knows.

Last night I remembered Carolyn and this incident. Around 10:30, I mixed up a drink of filtered water, powdered algae (cracked-cell-wall chlorella to be specific), a few drops of silica with sunflower oil, and a few drops of electrolytes. I drank it, as I do every night at bedtime.

Throughout my life I’ve had many memorable drinks: a Newcastle Brown Ale after a long rugby game, dark hot chocolate for breakfast at a hotel in Paris, the grapefruit soda sold at street stands in Buenos Aires, and in Mexico I liked to sweeten my café con leche with the full-flavored black sugar I found at the market. But last night as I drank the mix of algae and silica, I thought, that tastes really good.

And then I realized that I had just thought that— about algae. It didn’t taste like chocolate, but it was good. I actually enjoyed it. Carolyn’s theory must be true after all.

TIME

2009-09-22T21:24:00.000-07:00

When I started this blog, I imagined I would write things in real time. The problem with this idea is that real time is happening in real time. When David visits, I am face to face with my limitations, and also the breakthroughs I’ve had since his last visit, and I want to write it all down, but there isn’t a moment to make it to the computer. Likewise for so many days and moments, and this has been my pet frustration as I slowly, steadily recover from this terrible illness: not enough time to write. Days are still full of the hassle of being sick and having to constantly take care of my body, even as I have more strength and feel better throughout it all.

In DC Last week, amidst a few days of nausea, a weekend trip to dear friend's and packing my small personal pharmacy to head back to Seattle, I managed to do something I’ve been postponing for a long time: put together the two quilts I have been working on. This requires floor space. That is, somewhere besides my tiny apartment, so I got it done during the stay at my parents’. I asked my mom to take a picture, and haven’t had a chance to post it until now.

I highly recommend anyone who is sick take up some kind of craft activity. Quilting was great for me because I could do it in bed during the long dark years when I spent most of my time there. It was the one thing I could count on to keep me calm and happy, no matter how bad things got. Now it still brings a sense of solace and accomplishment to stitch for half an hour before I go to bed, especially after a long hectic day of appointments and sorting out miscommunications between doctor’s offices and pharmacies.

HEALTH CARE REFORM OR A BOOST FOR THE INSURANCE COMPANIES?

2009-09-17T10:03:00.001-07:00

Here's one article in the New York Times that sheds some light on Max Baucus's plan.

No government option.
No requirement that employers provide health insurance
No Medicare negotiation on pharmaceutical prices
Government subsidies for the poor and lower middle class who would be required to buy private insurance (= a tax-dollar funded subsidy ending up in the hands of private companies)

Yes, there are some taxes here and there on the insurance companies, just enough for them to have something to protest about so it doesn't look as if they wrote this bill themselves.

No wonder health insurance stocks rose yesterday.

I am going to call my Senators and tell them I hate this bill!

FLYING HIGH

2009-09-16T11:20:00.000-07:00

Written a thousand miles off the ground and posted later.

Physical therapists are the bomb. Physical therapy for my tendonitis has been a godsend, and in the process I have learned valuable things, like how wearing clunky, unfashionable shoes can make you happy.

In fact, I now have two physical therapists. The second one is the amazing Liz Waldner, who is helping me with my stiff neck, headaches, tight jaw, teeth grinding, et al. She has been working with me to shift out of the rounded back, head-thrust forward posture I tend to slip into when I am reading, writing, etc.

(You must be thinking that I go around hunched over like a Quasimodo, but that is in fact not the case. Or so Liz has reassured me. “We all do this,” she says.)

This all relates back to my latest obsession, Lymph Drainage. Ever since I stopped dancing I have had terrible problems getting my lymph to drain. Lymies know the symptoms: headaches, swollen lymph nodes, that congested feeling in the armpits and the groin, general malaise. On Rocephin it’s gotten worse, and I am compelled to do huge bouts of exercise daily just to keep the systems in my body moving.

According to Liz posture plays in as well. If I can keep my chest open and neck straight, the lymph will drain more freely. I have been noticing this is true over the past few weeks, and I have tried, whenever I remember, to engage the middle back and drop my tail bone down just a little while I am sitting. This brings the shoulders gently back and opens my chest. I always feel better until I slip back into my habitual hunch.

I think over the past two weeks in DC my posture has gotten a little better—at least enough to for me to now notice when I am really uncomfortable and doing my lymph a disservice. For example, when I am typing at my laptop computer: totally hunched up.

And now today, on the plane home to Seattle I have had a revelation.

I have always been miserable on planes. I get blinding headaches, preventing me from reading or watching movies to pass the time. I also have become violently ill from flying. On one terrible flight I sat through a particularly rocky last twenty minutes before landing trying desperately to hold onto my cookies. I tried to put my head between my legs to help with the sickness, but United Airlines no longer accommodates such luxuries—my forehead hit the seat in front of me. So instead I put my head in the aisle. The stewardesses bumped into me as they strode past, but it was better than the alternative.

We landed to everyone’s relief except mine. Instead of getting better, my nausea got worse. Then we sat and sat, waiting for a gate to open up. I fumbled for the airsickness bag just before I lost the contents of my stomach. Not feeling much better, I shakily pulled down the tray and put the bag, hoping a stewardess would come by. I rang the bell, but evidently no one was allowed to get up in that situation, because no stewardess arrived. For an endless ten minutes as we waited to be allowed out of our seats, I sat with a bag of my own vomit on a tray in front of me. No one asked if I was OK.

So needless to say I don’t look forward to airplane trips much. To add to my apprehension about today’s flight, I’ve had headaches and nausea over the past few days without even coming near an airplane. I managed to get over the worst of it, enough to think it might be OK to fly, but not enough to feel happy about it.

As soon as I took my seat a headache started up. We hadn’t even pulled away from the gate.

I noticed that the head cushion (unremovable) was thrusting my head and neck far forward and forcing my back into that terrible hump. There was no adjusting possible. Was this really causing all my trouble?

The night before my brother had given me a midsized hardback novel he thought I would like (Michael Chabon) and I had hastily thrust it into my backpack on my way out the door. I had little hope that I would read on the plane, but it turned out to be the best move I’ve made in a while.

Sitting hunched up in the ergonomically evil airplane seat, I thought of the book (who wouldn’t?), pulled it out and placed between my back and the seat. Voila! My back was brought forward just enough, I could now comfortably rest my head against the immovable cushion behind and everything was in alignment. I felt much better.

As it turns out, due to Swine Flu there are no pillows on airplanes anymore, so I have spent the entire flight with my brother’s book behind my back. And I have felt great! Tony the Tiger Great. Thinking happy thoughts, no headache, and hardly any nausea. (For that I have some fiber and charcoal capsules and they are taking the edge off. The nausea is only an indication that the lymph is draining, down into my unhappy stomach.)

Reading my book is, of course, not possible, but fortunately I wasn’t planning on it anyway. I brought my quilting on board and I have been stitching away, until I was inspired pull out my computer and write this post. Using the laptop is not ergonomic nirvana, but with the hardback in place it isn’t giving me a headache either.

Chronic Lyme Gets Mainstream Attention

2009-09-04T17:15:00.000-07:00

I am a secret fan of Diane Rehm. Way back, when I thought what I had was chronic fatigue syndrome, she did a show on it. Now she's done a show on Chronic Lyme.

TOO MUCH

2009-08-30T08:20:00.000-07:00

For the past two months I have been living by one precept: I won’t sleep if I don’t get enough exercise during the day. I am on a constant rotation of stair machines, swimming, power yoga and powerish walking. I am suddenly in wonderful shape, fitting into the jeans that I was too fat for a few months ago.

I also have days when my body cries out for a break. ‘You'll kill us with a big workout every day,’ my muscles scream. On those days I let the hours slide by, and in the evening I take a slow walk 10 blocks up and back on my street. At bedtime I am wide awake and I spend most of the night that way. The next day I am back at the gym.

At some point I was going to truly collapse, and that’s what I got after a night of little sleep, a big workout, a five hour plane flight, and another workout the next day. I did it all in hopes of keeping myself in balance. What I got instead was the opposite: too exhausted to sleep, too exhausted to move around.

I spent yesterday feeling as if my bones had been through a bone crusher and my muscles had been through a muscle crusher. In fact, such a machine exists, with both functions combined into one and having the added advantage of putting your body clock at odds with the schedule of those around you; it is called The Airplane.

Now, after years of practice my brain is pretty much stuck in the groove of constantly thinking about how to avoid physical discomfort: take pills at the 15 different proper times throughout the day, eat the right foods at the right times, don't eat the food that make you feel like a car crash, don’t lie down in bed too long, but do take naps, give myself daily injections and get others to give me more daily injections, if I can’t sleep try taking more chlorella, if my legs ache try taking Heart Gems (yes, I take a supplement called Heart Gems!) but not too many or you might not sleep, etc. Flagging in any of these duties brings on some form of physical discomfort —headache, insomnia, nausea, fatigue, etc. I put this all under the noble label of Taking Care of Myself and Keeping My Body in Balance, but really I am just trying to keep from feeling rotten.

Yesterday there was simply no way around it. I was going to feel bad. All I could do was get myself fed and lie on the couch, working on a quilt. I hurt too much to do anything else. At night as I lay wake in bed, having tried all the supplements that usually get me to sleep, I started to panic. I ached all over, I was exhausted and I just couldn’t drift off. I had failed to keep my body in balance! And then I remembered there is another approach I used to take when things were just bad all the time: acceptance. I thought, well, this is the antibiotic treatment for Lyme Disease. What do you expect? Sometimes it’s just going to feel awful and there will be nothing you can do about it.

And yes, that was a comfort. Simply accepting that I felt pretty rotten helped. I got up and searched through my old cassette books on tape and found an Agatha Christie to listen to, and lay down in bed and felt how tired I was and told myself that was OK.

INTERIOR DEGRADATION

2009-08-20T02:47:00.000-07:00

On my return to Seattle two weeks ago, I took a look around the apartment and decided things had to change. And I wasn’t just considering the dust The Poet let accumulate in the month I was gone. The piles of books on every horizontal surface; the bags, shoes and DVDs stored on the floor for lack of shelves; the futon/sofa with the broken slat, filthy cover and futon itself perennially slumped halfway down the frame; my medical supplies sprawled across the dining table. And lastly, the kitchen table, which has turned into a sort of desk for the Poet. (seen in the picture.) This is how far things can go when you don't reign them in.

Because at last I have the energy to do something about these things, at last I’ve reached the crisis point when I just can’t take it anymore.

So, between medical appointments, I’ve spent two weeks running around to places like Storables, and considering whether I can afford a new sofa that is non-toxic (the answer is no, absolutely not) or whether I should put the effort into fixing what I’ve got (yes, because it's all I can afford).

Is this getting on with my life? I’m really not sure. So far, the apartment doesn’t look all that different. It’s going to take a few more weeks plus a trip to IKEA before I have the transformation I really want, and I'm not sure I'll ever get The Poet to do anything about the piles of books in the kitchen corner.

Meanwhile I am not writing, not the blog, not anything. I miss it, and I feel my brain is succumbing to a vapid, all-encompassing preoccupation with consumer choices. I am telling myself this is a necessary step before writing. I am thirty six years old and my apartment compares unfavorably with a rodent’s nest. When things are respectable I’ll start to write again.

HOME AGAIN

2009-08-06T19:15:00.000-07:00

I'm back in Seattle after a long, fabulous visit to my family. When I arrived last night our apartment looked familiar and strange at the same time. And also tiny! (It is.) I had been missing The Poet so much, but I was also tired from the plane that I wasn't swept away at our reunion. It was still very, very nice but mostly what I felt was I had a headache. I hate it when I'm too tired to feel what I normally would feel.

I was so fried from the plane I couldn't sleep-- I took extra herbs and vitamin E and lay in bed for awhile, but in the end I got up and ate the homemade ice cream (sweetened with honey) I knew was in the freezer. Alone in the kitchen-living room I took a deep breath and realized our apartment smells like cardamon with a hint of jasmine, plus a very faint smell of old books. It made me happy. These are all smells of The Poet, and mixed together they are also home.

ONE WAY THINGS ARE BETTER

2009-08-05T08:31:00.000-07:00

I used to drink down vast quantities of water. Remember the story about the girl who took ecstasy and drank so much water that it killed her? That was me, minus the drugs, the glow sticks and death. I drank water constantly, and not just any water: high quality bottled water or water filtered at home with my absolutely fabulous Nikken filter. Buying water when I was out was dicey—Dasani or other cheap brands gave me headaches, tapwater was unthinkable. I never left the house without my 20 oz stainless steel water bottle already filled.

This was not just out of compulsion. If I ran out of water, within a half an hour I’d feel thirsty, and soon after that get tired. When my Nikken filter arrived via UPS, about three years ago, there was some assembly required—it contained many different parts that needed to be flushed out and screwed in place and the task looked daunting, given my general energy level. So I only motivated to do it when I ran out of bottled water. Putting that thing together had to be easier than going the store to buy more water, right?

Only I got thirsty in the process. And more thirsty and then tired, until I stopped reading the instructions in order to take a little rest. When The Poet showed up forty minutes later he found me collapsed on the bed. I asked him to bring me water from the co-op. As soon as I drank a few glasses I perked up and put the filter together. I have loved it ever since, because with it I never run out of water.

Now I am in DC visiting my parents, and I am drinking environmentally sinful bottled water, so it’s easier to keep track of how much I drink. And I have noticed something: I am drinking less. I used to drink one and a half gallons of water a day; now it’s close to half that. Today I put a half liter of Evian in my purse—just a tiny half liter!—and headed out on foot in the 90 degree heat to shop and hang with my niece and brother. When I got home four hours later I’d drank only half the bottle.

What difference does it make? It means fewer trips to the bathroom, and it means I am free of the hulking bottles I’ve been cramming into my shoulder bag. A lady-like half liter is adequate. That makes life much easier.

WHY LYME DISEASE MAKES YOU DO SMART THINGS

2009-08-03T13:39:00.000-07:00

Since I've been sick I am unable to function without one nap a day, sometimes two. And I'm not embarrassed about it. Read here for confirmation that it's a good idea.

A CAPITOL WORKOUT AND EXPLODING DOG

2009-08-02T20:39:00.000-07:00

In order to sleep at night I need to move around a lot during the day. I am not up to running yet, and with my Lyme-tendonitis there are limited things I can do—biking outside is not OK, but riding the exercise bike is; walking up steep hills or hiking is impossible, but stairs are OK. (Go figure,)

The best workout I’ve found while I’m staying with my parents in Washington DC is to walk to the US Capitol grounds, a mile from my parents’ house, then bust my butt up and down the huge flights of stairs just installed for the underground visitor’s center. (They look tiny in this picture, but believe me, they're not.) If I make it up and down twenty times, plus the two mile walk, that’s a good workout. Considering before I started the antibiotics for Lyme I was tired at five blocks, whole thing makes me pretty happy.

Today I brought the family dog, Kramer. When she comes along, I tie her leash to railing at the top step and give her a pat each time I come up. Today I was on my eight ascent, taking the stairs two at a time, when a Capitol cop at the foot of the stairs stopped me.

“Excuse me, ma’am,” (I hate being called ma’am. It hasn’t been long since I was getting carded buying cooking wine at Trader Joe’s. Now I am a ma’am.)

“Excuse me, ma’am,” he said, “you can’t leave your dog by itself there.”

“But I’m not leaving her,” I explained. “I’m just going up and down the stairs for exercise.”

No matter. Apparently from the vantage point of some cop on the huge plaza at the top of the stairs, there was an abandoned dog whose owner kept showing up from time to time to pat it, then abandon it again.

“She’s considered an unattended package, ma’am.”

?????????????????

“It doesn’t matter if it’s a backpack or a dog, it’s still an unattended package, and you know what a threat unattended packages are for us.”

I was torn between being horrified at the thought of-- what?-- feeding explosives to the family pet?-- and laughing at the preposterousness of it all.

I was about to point out that a skinny dog whose owner is always in sight of her, whose owner is in fact returning at sixty second intervals while she exercises, is not an abandoned backpack, but I thought better of it. Lots of crazy people come to the US Capitol, and some of them try to kill tourists and the Capitol cops themselves, so there are rules and the job of the cops is to enforce the rules. Even if this guy could see perfectly well that I was just a goofy girl (or should I say lady?) who lived nearby and was trying to walk her dog and get exercise at the same time, he had to follow the rules.

I unhooked the leash from the railing to head for home when I had an idea.

“Kramer, do you want to go up the stairs with me?” I asked. I didn’t have high expectations. Kramer weighs in at thirty pounds, and although her wippet ancestry has made her quite a sprinter, she has a neurotic aversion to stairs.

Well, she bounded up those stairs lickety-split. I think she found being compared to backpack so insulting she had to show the guard a thing or two. I had to hussle to keep up with her, and even the down leg, usually the most unnerving for Kramer, posed no problem. After about seven rounds, her tongue was close to hitting the granite pavement as she dragged behind me. I decided to call it a day.

The guard had been watching us the whole time, just in case Kramer exploded, I guess. When we left I thanked him and he gave me a wave.

DR X PART TWO, THE START OF A GOOD THING

2009-07-29T14:03:00.000-07:00

Continued from the previous post

In the months before I went to Seattle I had been in the depths of despair, and I went to see a therapist for a little while. When I told her my decision to go see Dr. X, one comment she made stuck with me. She said, “Well, if you have been sick for six years you shouldn’t expect to get better in just a few months. I would think it would take quite some time to reverse what has been going on in your body.”

I don’t know if for other people it has been this way, but while I was the most sick, especially when I didn’t have a diagnosis or any way of making sense of it, I lived with the amorphous idea at the back of my mind that at any moment I would be cured quickly. It wasn’t something that I consciously expected, I certainly worked with doctors and gave them time to help me (I gave one acupuncturist a year before realizing I hadn’t made progress); it was just that it continued to seem so absolutely strange, so alien to me that I couldn’t get up and walk around, that the opposite of this state of affairs, i.e. a simple cure, seemed of course the most normal, natural thing in the world, like water running downhill.

So when this woman said to me it was only logical that it would take some time for me to get better, even with the best doctor, it wasn’t exactly what I wanted to hear. It did, however, bring me down to earth. I realized I had been secretly harboring a childish expectation, and it was time to put it to rest. I would go to Dr. X with an open mind, and I would give her time. I couldn’t expect instant miracles. The plan was for me to spend three months in Kirkland, a suburb of Seattle, getting as much medical care as I could before I returned to DC and continued with treatment I could do at home in DC.

My mother and I arrived at our first day eager and excited. When the appointment finally started, an hour and a half after it was scheduled, we weren’t disappointed. Before I arrived Dr. X had asked me to write out a medical history, starting from before my birth (was their anything while I was in the womb?), and she went over this in detail. She asked a myriad of questions about my illness now, and wrote up a list of tests she wanted me to get done right away. When I told her I was concerned I might still have parasites from my time in Mexico, she called a doctor at the University of Washington with expertise in that area, and asked him what test she should be running for me. These were added to the list.

As an osteopath (OD instead of MD), Dr. X believed the alignment of the bones had an effect on the health of the body, and vice-versa. After the medical history she did a twenty minute physical exam, with an assistant taking notes on the length of my legs, the minute torques in my hips, the tension in my neck and arms, etc. Before she was done she had her receptionist scheduling me to get orthodics and see a dentist to begin an elaborate process to correct a misalignment in my bite, which was causing me all sorts of TMJ-related headaches.*

By the end of that first appointment, I was hooked. No one had ever taken that kind of time with me, cared so much about my symptoms, or made that kind of effort to work with other doctors. When we left I was tired and very hungry—it was close three o’clock and we had arrived at the office at ten am—but I also excited and hopeful once again.

As we ate an extremely late lunch after the appointment, my mother and I talked over events. The most surprising thing had been that Dr. X was extremely overweight. (Just to round out the description, she also had short white hair and a friendly smile.) My mother said despite her weight, Dr. X gave the impression of being strong. I had to agree, she somehow didn’t look unhealthy, although we usually equate obesity with poor health in our society. When it comes to doctors, we expect them to at least look healthy. Perhaps it was Dr. X’s confidence and strength of character that kept us from judging her too quickly.

One thing was clear from our interactions with her: she was going to do things the way she thought was best, ad she didn’t really care what anyone else thought. Her medical practice was radically different from any other I had encountered, and it impressed me that she had the wherewithall to pull it off.

* These things turned out to be fabulous turned out to be fabulous. The dentist made a small appliance that fit over my teeth and was calibrated to make my bite line up in the position that would have my jaw, head and spine as relaxed as possible. My upper body had been locked with tension for years, but I felt the change as soon I started using it. It worked beautifully.

As for the orthodics, once I had them most of the aching in my legs went away. I still tired out very quickly, but I no longer had the immediate sensation when I stood up that my legs just couldn’t handle it. With both the dental appliance and the orthodics, the quality of my tiredness changed. This may not sound like much, but it was. My body was no longer a tense gridlock of aching muscles, day and night. I could actually rest, that is, lie down and feel a sense of peace, my whole being now hummed with the productive work of rest.

For anyone dealing with this kind of chronic fatigue, I suggest looking into orthodics. They are relatively inexpensive and insurance usually covers them. The appliance for my bite was not at all cheap, but worth it if you can afford it and are absolutely miserable with TMJ. This a world away from a normal night-guard any standard dentist will give you. The dentist I saw was Dr. Rhys Spoor.

HISTORY: DR. X

2009-07-27T07:50:00.000-07:00

Looking back on the eighteen months I spent as Dr. X’s patient, much of it is hard to explain. Those who have been in my position—cripplingly sick for many years without a diagnosis or treatment—might understand. The irrational decisions made by those facing death we tend to forgive. Someone who is facing a lifetime of constant suffering, followed by death, may make decisions that are just as extreme, or just as compromised. There is nothing keeping her from the terrible abyss but hope of a cure, so she searches out one medical solution after another. She will never stop searching, and as the first choices fail she will look further and further afield simply to have hope.

By the time I reached Dr. X, I had been sick for five years; for the last four, standing on my feet was a colossal effort and I spent the vast majority of my time in bed, listening to books on tape. At the start I was twenty six years old, at the end I was thirty one, and I was living in my parents’ house.

The doctor immediately before Dr. X was Dr. Wu, a sixty-something Chinese acupuncturist who read the energy in my meridians with a computer program and a sensor that plugged into his laptop. He spoke little English, but enough to tell me “you don’t worry, I take care you,” as he put twenty or more needles in my body, then draped a sheet over all of them before leaving me to fall asleep for half an hour.

I would leave Dr. Wu’s office with a brown paper bag of dried seed pods, bark and twigs. I boiled these up in a special clay pot, three times for forty-five minutes each, each time pouring off half the brew and adding more water. The final product I kept in the fridge and drank several times a day.

Soon I saw some improvements—sitting up wasn’t quite so exhausting. I felt calmer, clearer-headed, perhaps a little stronger. Towards the end of the three months I tried walking very short distances, then even a few blocks at a very slow pace, and was happy to find that I was alright afterwards.

Then came the day I tried to walk the same short distance and found myself exhausted and aching in a way that was all too familiar for me. I went back to Dr. Wu and tried to explain the problem to him, but he seemed not to understand. There was something fundamental he was missing. If his English were better (or if I spoke Chinese) perhaps I could have explained it. I rested and hoped for a return of that little bit of lost energy, but as weeks passed my despair grew. The only way out I could imagine was death.

I remember crying uncontrollably at this time. I was unable to tell my mother how bleak things were in my mind. All I could say to her was, “I don’t know what I should do. There is nothing left for me to try. What would you do if you were in my position?”

“I would call Dr. P,” she said. “You haven’t been in touch with her for a long time, and she might have some suggestions.”

Dr. P was an extremely kind, slightly absentminded MD, one of the few medical doctors in DC with respect for alternative medicine.

Of all the doctors I had seen, Dr. P had produced the most lab work confirming there was, indeed, something biologically wrong with my body (low nutritional levels, high markers of toxic substances and adrenal function close to zero). She was still far from having a complete picture of what was wrong with me, and all her attempts to treat me had backfired, sending me into week-long relapses. This was no different than other practitioners I’d been to, but when I called her tell her things went wrong she didn’t blame me—and that was different, so I kept working with her. She earned my respect in the end by telling me honestly that she did not know herself what to do. Her first suggestion was for me to go to a doctor in Seattle, but I wasn’t ready to go so far from home, so she told me about alternative therapies in the city. Dr. Wu was the sixth practitioner I had tried since then.

When I called Dr. P that late spring of 2004, having given up all hope on a cure from Dr. Wu, we agreed I’d tried everything in Washington worth trying. She suggested again I go to Seattle. When I told my mother this, she surprised me by saying it was worth considering.

I, on the other hand, was skeptical. I had been to so many doctors, in Mexico where I had first gotten sick, and then here in Washington. I had been to John’s Hopkins University Medical Center. I’d been to doctors praised to high heaven by friends of friends whose symptoms were close to mine. A parade of Western doctors had run tests that turned up nothing. I had tried acupuncture, homeopathy and vitamins, acidophilus and biofeedback, cranial sacral therapy and Nambudripad’s Allergy Elimination Technique. I had even been to a specialist who had wanted to operate on my sinuses, although I had no problem with my sinuses.

And here was the thing: all the doctors I’d been to (with the exception of the sinus guy) offered plausible explanations for my illness. In the initial visit they diagnosed me so well I was sure I had found the answer to my problems at last. And each course of treatment ended much the same way: my body was pushed too far, without any means for recovering from Lyme disease, which was really what was wrong with me, although no one knew it. For all my money and effort, I wound up feeling worse, with my hopes torn to pieces.

After five years of that, why would I go to Seattle to see another doctor who probably didn’t know how to cure me either? Dr. P insisted that she would know how, but I remained doubtful.

A phone call was arranged. As a journalist, I had a list of questions for Dr. X. How many patients with symptoms like mine had she seen? How many patients had she seen who reacted to treatments in the opposite way than what she was expecting? (This was often the case for me.) What would she do if something she tried didn’t work?

For all my questions she had answers that convinced me she was willing to think creatively, if her effort failed she would not simply blame me for it, as most doctors did, but go back and reassess her own work. This was more than anyone had done for me so far.

On the other hand, as a journalist I knew this was her own version of events, and it was always worthwhile to get a different perspective. I asked if I could speak with her patients.

Her office sent me a list of seven patients who had agreed to speak with me. I called them all. Each had gotten nowhere with standard medical care but had made great progress with Dr. X. Some were at the end of their treatment, others had only been with her a few months. Each had at least one symptom that overlapped with mine, and all had good things to say about Dr. X.

One other thing I heard over and over: she is not a normal medical doctor, she will do some unusual things, but if you keep an open mind she will help you.

So it was that my mother and I boarded a plane to Seattle in June of 2004.

This story continued in the next post.

LET'S GET COUNTED

2009-07-22T11:58:00.000-07:00

The California Lyme Disease Association is conducting a survey to help Lorraine Johnson, (JD, MBA) in her testimony before a panel to set new Lyme treatment guidelines. Up to now the official Lyme treatment guidelines have been terrible, spreading misinformation and promoting ignorance about the disease.

That could change, thanks to a Connecticut court case. Ms. Johnson is a Lyme patient advocate who will try to give a complete picture of what Lyme is really like. Help her by filling out this survey. Click here.

KEEP CALLING

2009-07-21T07:11:00.000-07:00

If you have any doubt about where all the money that should have gone to cover your antibiotics and doctor's visits went, read here.

It turns out that Max Baucus, Democratic Senator from Montana and Chairman of the Senate Finance Committee, has been accepting campaign contributions from BlueCross BlueShield, the same people I was on the phone with last week, the same people who have been denying my health care coverage for years, not to mention throwing out my claims forms, etc, etc.

This company does not operate in Montana, and has no business giving this guy money except to encourage him to prevent meaningful health care reform from happening.

I just called his office and told them I think Mr. Baucus should support meaningful health care reform with a public option. The receptionist said thank you, he would pass the message along.

It's not much, but it's at least something. Let's call in and let him know sick people from across the country want him to do something to help them!

Here's the number: 202-224-2651

BlueCross Blue Shield and all the other insurance companies have all the money they've skinned off of us, and they have used it to dole out $3 million to Max Baucus over five years. (It truly pisses me off!) The system is corrupt, we all know that. But let's call anyway. Obama is putting everything he's got into this, let's show what support we can!

Call your representative, call you Senator, and for goodness sake, call Max Baucus, because chances are good he's accepted money from your insurance company, too! The deck is stacked against us, but if health reform doesn't go through, do you want to have to accept that knowing you didn't even call???

WORKING THE PHONES

2009-07-16T19:53:00.000-07:00

So this morning I had to call the insurance company. I went into it with the best, most positive attitude. Yesterday I'd sat down and read through my plan description for an hour, and was pleased to find that the latest round of denials (of all my prescription claims) was completely unfounded. My prescriptions are clearly covered. I was stoked up and ready to send in my appeal.

Before I can send in my official grievance, I am required to call Member Services because "usually concerns can be cleared up by just gathering more information."

That is, you call them and ask why your claim has been denied when clearly it should be covered, and some pitiable person with a lousy job tells you it's all perfectly reasonable for your claims to be denied and you are completely mistaken to think otherwise. Just one more step in the company's attempt to keep from reimbursing you.

It's all just part of the game, I've been through it many times before, and I know the poor person at the other end of phone is not out to get me, she just has a terrible job that she probably needs very badly, or she would have quit long ago.

INDIGNATION

Usually I pride myself on not losing it with this illness. Of course every now and then I do lose it-- I cry and scream and even throw things, but these occasions are rare, and getting rarer. Long ago I figured out that being angry about being sick is just a waste of energy. I'd rather enjoy all the things that are great in my life and deal with the myriad elements of sickness as best I can.

So why, two minutes into this phone call was I furious? I was shouting at this poor woman on the other end of the line, at a call center in Kansas, and I was close to tears. Tears of frustration, not just at the phone call, but for the ten years of my life lost to illness and the countless indignities I have to go through. Break out the violins!

Perhaps it was how nice and reasonable this woman sounded, like she really was a nice, nice person, the kind of person who would bring me raspberries from her garden if I lived nearby-- even while she was describing to me an entirely different set of rules and regulations that were nowhere to be found in my health care plan, and in this parallel universe where the prescription benefits administrators live none of the medicine that treats Lyme is covered, especially not the injectable kind, which of course is the kind I'm on like crazy and costs a fortune. She seemed puzzled that I didn't know about all these rules and regulations in her world, but ultimately she could do nothing. She couldn't even give me the address where I should send my appeal-- she told me to call a different number to find that. (Of course at the second number they told me to call the first again, but that's a different story.)

THE SYSTEM

In the whole discussion and debate about health care and the insurance industry, the thing that makes no sense to me is how people keep using the word "system" to describe the current state of health care in our country. I just would like to say, what system??? Perhaps Medicare and Medicaid have a system, but as for the rest of it, from what I can see and what I've experienced, there is no system. There is just a horse manure everywhere you go, with a few truly good people in the midst of it, such as Dr. Ross and Carolyn Humphreys, managing to help a few of their fellow humans.

When I hung up the phone I felt terrible for yelling at that poor woman. I'd already apologized to her several times before I hung up, having realized how badly I'd behaved. The worst part of it is I should be able to call up the executives running my insurance company and scream at them for an hour. I don't know if it would be productive, but at least my anger wouldn't be misdirected.

Instead I called my Congressman's office, and told the sweet woman who answered the phone that they should be sure they were working as hard as they could to make Meaningful Health Care Reform come true, because my insurance company was making me miserable. She asked my zip code so she could chalk up my call in the day's tally, and told me how sorry she was I was having a terrible time, and then we said goodbye.

I felt a little better.

DEMOCRACY AT WORK (THAT MEANS YOU!)

So here is my plea: Call your congressional representative.

If you are as miserable as I am with this or even if you aren't but you know me or you know someone else who goes through this stuff with the so-called system. Call and keep the pressure up so this legislature goes through.

It's not a big deal to call. They have people there whose job it is just to answer the phone when constituents call, and the best way to let them know you want change is by calling. Obama is the closest thing to a demi-god I have witnessed in my thirty-six years, but he can't do it all alone. We need to help.

ICE

2009-07-14T08:23:00.000-07:00

I have a sneaking suspicion that I am the only person out there giving myself subcutaneous shots of heparin to treat Lyme disease. I know I'm in the minority when it comes to Rocephin by injection instead of IV. I'm writing this anyway, in case there is some kindred soul out there, trolling the internet for the one-long lost person who also shoots up these drugs.

I love my injections. Not the part with the needle going into my flesh, but I love what the medications do for me.

I loved heparin from my very first time, four years ago, when I felt a warm tingling washing away the ache in my legs and fell into a rich, deep sleep a half hour later. I don’t fall asleep right after my injection anymore, but it keeps my blood circulating, makes me wonderfully relaxed, and allows me to do good things, like walking, for instance. When I miss my injection my shoulders stiffen up, my hands and feet get chilly and I don’t sleep that well.

(Apparently besides thinning my too-thick blood, heparin also has a therapeutic effect on the Lyme itself. According to my MD, Dr. Martin Ross, (and I'm paraphrasing wildly here) there is a kind of protective sack around the really hard to treat Lyme, and Heparin helps break this force-field down so the antibiotics can more easily get at the spirochete and destroy it.)

Rocephin I wasn’t quite so sure about at the start, but on the third day I discovered that moving around-- not lying down as I’d been doing—right after the injection got rid of the pain and also the despair that had been taking over. Since then I think Rocephin is great. On Rocephin I’ve cut down from two naps a day to one. I feel more solid and more energetic. I am working better, walking better, feeling better. I don’t want to miss a single dose.

Both these injections cause bruising, each in their own special way. At first it’s negligible, but over time the bruises build up. The best thing is to get on them right away, before they get the upper hand.

I used to ice right before and right after I injected my heparin, until naturopath Amy Derksen told me it was better to ice at a different time, so my body would absorb the heparin more quickly after I’d shot it into my fat. I’ve taken the same approach with the Rocephin—walk around, get it circulating. Ice later if you remember.

That means on a good day, when I'm home and can remember to do it, I shove ice packs down my pants. Generally I do this in private, although the baggy shirts I've been wearing to protect myself from the sun allow me to walk around outside with a surreptitious ice pack on my hip. Sometimes all the crazy things I do to get over Lyme disease just dovetail in the most marvelous way!

Besides the ice there is also Arnica, the very famous homeopathic, available as a topical cream at any self-respecting co-op or health food store.

The Rocephin also creates swelling and tough, lumpy spots under my skin that are sore when I touch them, lie on my side or do certain yoga poses. Just a few days ago I discovered I can massage these away. To do this a lotion that is thicker than your garden-variety moisturizer is helpful, something that is mostly shea butter or cocoa butter, i.e. solid at room temperature. (Don’t use Vaseline—that stuff is made out of petroleum!) Once the shea butter is on there, press down gently but firmly and move your fingers around until you feel the nubbly texture in the swollen area. You can then use the same gentle pressure to massage these little lumps away. I do this before bed and wake up in the morning happily de-lumped and looking forward with delight to my next injection.

IT'S WORTH IT

2009-07-12T20:03:00.000-07:00

Last fall, The Poet and I took an overnight trip to nearby Vashon Island. We had scarcely travelled together before that, given how sick I’d been and how The Poet eats up his vacation on trips to Egypt. I don’t remember how I got the idea of the weekend away into my head—I must have decided it would be fun to see some of the beautiful spots outside Seattle I’d heard so much about. It was pretty last minute, so I spent a couple hours trolling the internet and calling around for an available room. I also spent an hour and a half packing my medicine, injection gear, clothes, some back-up wheat free food and my infra-red mat for sleeping. When we arrived at the bed and breakfast I spent another hour unpacking it all.

While we were away I still had to take my two naps per day, do injections, keep track of taking my myriad of pills (harder to do when they’re not in the usual spots around the apartment) and worry if I would be able to eat what food came my way or able to sleep on sheets washed in detergent I would most likely be allergic to. In the end that didn’t matter—I tried to sleep next to The Poet for about half an hour on the queen sized bed, but he has a tendency to kick anyone in proximity to him while he sleeps, so I ended up spreading my far-infra-red body matt on the floor and using my backpack as a pillow. I woke up feeling pretty stiff, then had to worry about doing my injection and drinking down medicinal liquids before I made it down to breakfast, then back upstairs to pack all my stuff up before the checkout time.

We spent the remainder of the day walking through the hilly grounds around the B&B, then exploring the island. The trip was so short that by the time I was home and resettled it seemed the ratio of planning, packing, napping and travel to leisure time was 3:1.

The Poet, on other hand was delighted with the excursion. He frolicked on a sandy beach and insisted on wearing his socks to wade through the chilly surf to a beckoning sand bar. Such a simple change of scene was magic for him; he returned to Seattle ebullient. I, on the other hand, felt worn out from the strain of it all. Couldn’t we be just as happy at home, with all Seattle had to offer and so much less hassle?

So I gave up on traveling. I decided the only trip really worth taking was home to my family, where I know what food I will be eating and what bed I will be sleeping in, and where can stay for three weeks without racking up a huge bill. Otherwise, I told myself, I could be perfectly happy at home. As Emily Dickinson wrote:

There is no Frigate like a Book
To take us Lands away
Nor any Coursers like a Page
Of prancing Poetry--
This Travers may the Poorest take
Without oppress of Toll--
How humble is the Chariot
That bears the Human soul

True that, until at last the Human soul feels it will Scream if has to look at the same white walls of the same tiny Apartment for yet another Day, no matter how good a Book said Human soul might be reading.

So it was that a few weeks ago I found myself casting around for anywhere we could go at the last minute for two nights. We ended up in Portland. Not surprisingly, given my travel record, I had never been there.

Yes, I spent forever packing, and unpacking, and even ended up missing taking some of my supplements at the right time. Expecting the floral scented sheets to be sickening (they were), I brought my own pillowcase and sheets to throw on top of the hotel linens. To my surprise, The Poet was moody on the first day, as he really wanted to go to a beach and didn’t find being in another city that exciting.

I myself had a glorious time. Yes, Portland isn’t all that different from Seattle, except there is no sales tax. There are also many fewer hills, so I could walk all I wanted without aggravating my tendonitis. But the best part was just to be somewhere different, with no dishes to wash or dinner to cook or garbage to take out.

By the second day The Poet had relaxed a bit, and we had several truly good meals, went to Powell’s books and did some unexpected things like stopping in the 3D Museum and riding a Ferris Wheel.

At age 16 I went to Costa Rica to learn Spanish, at 20 I boarded a plane for France and at 21 another to Buenos Aires. At 36 climbing aboard a ferris wheel in Oregon almost felt like more adventure than I could handle. I was worried that the ride would be too fast—I kid you not. This is how dull my life has become, but the upside was I could get a big thrill from riding a ferris wheel. We shrieked and laughed and marveled at the view.

I’m not sure if there ever was a trip in my whole life that I appreciated so much as the one to Portland. Before my diagnosis, before my treatment, I could not have dreamed of such a trip—three hours on the highway for starters, then lugging bags up and down stairs to the hotel room and walking around the city most of the day. But it was more than just another marker of how much stronger I am. The Poet and I both left Seattle crabby and burned out, and came home happy with ourselves and happy with each other, and it has lasted. With all due respect to Emily Dickinson, there is no frigate like the Honda Civic.

TWO YEARS ON ANTIBIOTICS

2009-07-10T13:07:00.000-07:00

In early July 2007 I swallowed my first antibiotic pill to treat Lyme disease. At the time I had been sick with Lyme for at least seven years, probably longer, probably nine or more.

I spent most of those years lying in bed, gathering up tiny wisps of energy by means of elaborate breathing exercises, and pushing the wisps into a ball, so I could sit up for an hour a day and draw, then collapse back onto the nearest couch and start marshalling my breaths all over again. To pass the time I listened to NPR, and then every single book on tape I could get my hands on. Driving was too much, reading was too much, the noise inside a baseball stadium was too much. At times even walking to the kitchen was too much.

I stood on my feet only with trepidation, knowing that within seconds the dead feeling would be there, in my lower legs, and if I let it go on too long it would creep up my calves to my thighs and then the rest of my body, until there was nothing to do but cry from the pain of it and no way to get out of its stranglehold, not even with the most byzantine breathing or the most glorious meditation, no way besides waiting it out for the next few miserable days, in bed and aching, until brief moments of relief would come and go and coalesce into the bliss of just feeling OK, and I had one more chance to stay inside the lines, repentant now for whatever it was I’d tried to do—make a cake or walk over to the neighbors—and I would start gathering my energy again, keeping my sights low, thankful for my hour when I could just sit up and draw or sew.

And now here I am, after two years on antibiotics. I can walk anywhere I like, go the gym, spend the whole morning shopping and teach David to play baseball in the afternoon. I can read for hours and go to a ballgame. I cook dinner and grocery shop and clean the house, and at times I even remember to be grateful that I can do these last three.

When I first saw Dr. Ross and he told me I had Lyme disease, he said the antibiotic treatment would last two to three years. It seems at this point it will be three. Despite all the many things I can do after two years, there are quite a few that are still not possible. The main one is just get through an entire day without downtime and a nap. The other is count on a good night’s sleep. One huge change since I started the antibiotic Rocephin six weeks ago is I can function quite well on just seven or even six hours of sleep, so the insomnia is not the source of misery it once was.

Because of the Lyme-related tendonitis that flared up six months ago, there is a whole range of physical activity that is off limits to me, the ones I particularly love, like dancing and jumping on the mini-trampoline and walking up hills fast. But all in good time, I tell myself, I will be able to do anything I want.

There is one last thing that has not unfolded quite as I had hoped. As I started the antibiotics I knew it would be tough. I was right: there are myriad prescriptions to keep track of, and herbal drops to take and special drinks mixed up and a battery of supplements to organize. On top of that I find I need to go to the sauna every few days and take long walks and do yoga daily so my lymph drains. I have physical therapy and myofascial release therapy for the tendonitis and then the regular doctor's appointments.

None of these things is that bad, in fact some of them bring me a kind of mind-numbing enjoyment. None of them is optional either, and added all together they come out practically to infinity and there is scarcely an hour in the day when I can read, or write, and drawing is a thing of the past.

This is not what I had anticipated, not at least for year three. I had somehow told myself that as Lyme loosed its grip on my physical self, I would be able to write. At this point in the timeline I envisioned myself writing perhaps two to three hours a day, if not more. In fact, I saw it as a sort of heavenly time when although I didn’t have the stamina to go out and hold down a job, I would be happily at home, typing and thinking and taking blissful naps.

What I didn’t reckon on was that being able to write and having time to write are two entirely different things. Lyme may not be running my body anymore, but it is still running my life.

It’s a pretty weak complaint: not that my fantasy of recovering from Lyme didn’t come true, but that my fantasy of what it would be like while I was recovering from Lyme didn’t come true.

As for the first fantasy, I am far from giving up on that.

THE POET

A special shout out goes to The Poet on this post. He and my mom have both been there for me when I needed them the most, my heroic mother during those years spent in bed. But these last two years it has been The Poet who has lived with me, who agreed I should move to his apartment before I started the antibiotics, who didn’t have to sign up when he went on that first date with me, who could have backed out any time, like when the Plaquenil made me hysterical or when I asked him for one more ride to the doctor, or to give me an injection in the butt every day, but who instead has stayed right where he is, has never flinched.

BACK TO MYSELF AGAIN

2009-07-02T21:55:00.000-07:00

Phew. Yesterday was insane. After writing the last post I drank down some Vitamin C in hopes of cleaning out my system. Made myself more nauseated instead. I got dressed and got in the car for a previously scheduled doctor's appointment. I felt worse and worse as I drove, and was quite sure I shouldn't be on the road. My teeth were chattering from the nausea and pain as I pulled up to the office-- so much for assuming I'd be better soon.

I actually didn't know nausea could be that excrutiating. In the past nausea has just been nausea, if it got worse it was only until you threw up. But in this case I wasn't nauseous because of anything in my stomach, so it just ricocheted around my body until I felt every second like I was about to explode. That lasted around an hour.

Dr. Ross suggested extra magnesium to get calm down the muscle spasm in my head, and agreed that it was probably related to die-off and an extra-long session of myo-fascial release that had increased the circulation to my head. He suggested a glutathione IV if the nausea didn't improve.

I had texted The Poet on my way into the appointment, and when I walked out he was already in the waiting room, ready to drive me home. Hooray for The Poet, my hero! He is keeping the streets of Seattle safe from half-blind, nauseated drivers.

At home I forced myself to swallow down chlorella and magnesium glycinate, then figured out that if I lay on the couch without moving a muscle the nausea disappeared. I fell asleep.

When I woke up I called Jeanette, who does a relaxation/nervous system therapy called SRT. We did a session over the phone, and at the end of the hour the nauseau was about 25% of what it had been, much to my relief. I was well enough to get David from camp and drive us both home. Normally we don't watch much TV, but yesterday we saw the whole baseball game and the second half of Star Wars Episode IV and everyone went to bed early. I woke up feeling much, much better.

P.S. Had an appointment with Amy Derksen today. She thought the episode was set off by the visiting doctor who increased one of my supplements (P5P) a couple weeks ago. This caused me to detox heavy metals a little too quickly. The chlorella and the magnesium were the right things to take, and I have dropped the P5P for the time being.

The Herxheimer Reaction

2009-07-01T10:34:00.000-07:00

Here it is, the Herx. After two years on antibiotics, I've never had a full blown one like I've been having over the past few days. Splitting headaches and nausea. This is no fun.
I'm going to try some extra tumeric capsules, although the thought of swallowing anything now daunting.

THE SUN

2009-06-24T11:45:00.000-07:00

When a girl goes shopping at the urban intellectual’s favorite box store, she is faced with many choices. There are clothes for women who work in offices, clothes for women who walk on the beach, clothes for women who play tennis and others for women who run on treadmills at the gym. There are clothes for women who ate too much, and clothes for women who did not use birth control, but where are the clothes for the women who take multiple mega-doses of antibiotics and burn the moment the sun hits their skin?

Such a section would offer flattering wide-legged linen pants in a range of colors and gauzy tunics with cool and practical bell-shaped long sleeves. There would be broad brimmed hats that somehow managed to be dignified, even chic, instead of floppy and smacking of middle age. There would perhaps be delicately woven shawls that could be draped dramatically over the head and shoulders for some impromptu shade.

These thoughts drifted along with me as I wandered through the ladies’ section of Target the other day. I found no such articles, so I settled a pseudo-straw hat that was the best of the floppy bunch.

A month ago a ferocious sun burst out from behind Seattle clouds and ever since has reigned down fiery flames that scorch my skin on contact. This came as a bit of a shock to me, as I had been happily anticipating the golden sunlight that we Seattlites dream of, yearn for, reminisce about for nine months of the year. Now that I am taking Zythromax, and Rocephin, and Plaquenil and Diflucan, I can no longer manage even the meager fifteen minutes of daily basking in the mild northwest sun that last summer, when I was taking only Bicillin, I could enjoy. Thirty seconds is more like it.

And so I found myself pondering the organic sunscreens at the food co-op. The one I picked out met the approval of the checker, who was himself practically an albino. I took him to be an expert in sunscreens and was quite satisfied when he told me the titanium and zinc in it were micro-particles but not nano-particles, so they wouldn’t clog my pores or damage my skin.

The sunscreen worked, in that it kept my skin from turning pink. But it oddly created a mild burning sensation on my arms and face a few minutes after I rubbed it in. (This is probably due to my chemical sensitivity, a collateral of Lyme Disease. Although the sunscreen was 70% organic it still contained Potassium Sorbate and Phenosynethanol, identified as “preservatives.”) The micro particles also gave my skin a ghostly whitish hue. I decided to use the stuff sparingly, and thus my trip to Target for protective clothing.

I left the store in disappointment, and came up with the best anti-sun garments I could find on a budget: said floppy hat and one of The Poet’s old oxford shirts, about ten sizes too large for me. This combination, a friend has pointed out, makes me look like the Fat Albert character whose bell-shaped hat covers his face, save the strange holes for his eyes, and wears an oversized shirt to boot.

Within a few weeks vanity took over, and I had switched out the Target hat for a $3 one I found at H&M: much jauntier, with the trifling disadvantage that it didn’t quite provide shade for my chin. No problem, I had my sunscreen.

Or so I thought until two days ago, when a glance in the mirror showed that after a brief walk in the sun the skin around my mouth was covered with hundreds of tiny wrinkles. The whole area looked a bit red and was, to top it off, dry and bumpy.

I have always assumed that 99% of women’s beauty products are pure bunk. I use shampoo and conditioner, soap and a scrubby cloth. Due to my chemical sensitivity all these products have no chemical additives or preservatives, and I always assumed this simplicity was the key to youth and longevity. Now I began to reconsider. At this rate in about a week I was going to look like I was fifty, or at least my chin would. I needed a really good moisturizer, bad.

What was this Dr. Hauschka I had heard so much about? Hadn’t my sister said something about wild and organic botanicals harvested at the peak of their potency, then distilled by a brilliant chemistry PhD obsessed with creating the best lotions in the universe? I made a beeline for his or her products that afternoon at the co-op. Rose Day Cream, Quince Night Time Rejuvenator, special tiny jars for puffy eyes. I made my best guess for the appropriate potion for a wrinkled chin. Fortunately there was a sample tube of Quince Day Cream. I took a little and rubbed it in. Then I looked at the price tag: $36.99 for a one-ounce tube! Horrified, I rushed out of the Body Well Being aisle and carried bravely on with the rest of my grocery list.

Whether it was for better or for worse, at the end of fifteen minutes of grocery shopping my skin, having absorbed the sample quince cream, was noticeably softer and smoother. I found myself back in the face care section, contemplating paying thirty-seven dollars for a one-ounce tube of youth. I just could bring myself to do it. Instead I decided on $13 for two ounces of Aubrey Organics facial moisturizer, $28 on MyChelle anti-aging sun screen, and $10 on a second sun screen, in case the first didn’t work out.

I also found myself contemplating using a little Dr. Hauschka from the tester tube each time I shopped at the co-op. From the looks of the tube, I wasn’t the only one with this idea.

In life we are constantly weighing now versus later. Spend money now on things that make you happy, or save it for later when you might need it. Be relaxed and carefree now, or spend time and effort being organized to avoid bigger problems later. Go through grueling, painful medical treatment that worsens your symptoms now so that later you are healthy.

For the most part, when faced with such decisions, I prioritize the future.
My choice for the moment is about all about vanity: I can wear the chic hat now and walk down the street in dignity, or spend the next three months looking like Fat Albert’s friend Dumb Donald and prevent wrinkly skin later. I am choosing the latter. Next year, I hope to look good.

MEDITATION

2009-06-22T13:31:00.000-07:00

David arrived a week ago for his summer visit. We’ve been playing baseball and soccer, having the usual wrestling/tickling wars, and consuming countless grilled cheese sandwiches. We spent half of last week at nearby Whidbey Island, the other half visiting friends, enjoying the Fremont Solstice Parade, and tripping over each other in our tiny apartment. This morning he left for his first day of summer camp.

Precious peace. Until 3:30, the place will be quiet. I can slow down and think about taking care of myself, re-order my prescriptions, take my supplements at the right time, eat lunch without rushing, write a little.

And especially I can sit down in silence to meditate.

I came to meditation strictly for survival, not out of any spiritual inclination. Without meditation I would not have made it through the darkest years of Lyme Disease. Without meditation the grueling recovery on antibiotics would be impossible.

In my life I try to avoid giving too many suggestions—most people can figure out what they need to do far better than I could figure it out for them. But I strongly suggest anyone who is chronically ill learn to meditate. When you meditate, you give your body and your mind a chance to relax deeply—perhaps more deeply, or at least differently, than when you sleep. Meditation pulls your body out of the cycle of tension that we all operate under almost continually; it puts your nervous system into the state known as parasympathetic, when your immune system and digestive system take priority and your body works to heal itself.

When I meditate, I feel better about myself and my life, my mind becomes calm and my thoughts become optimistic. I can feel warmth and tingling spreading to my hands and legs and I get a profound rest. It is usually easier for me to fall asleep at night if I have meditated during the day.

The kind of meditation I do is the easiest kind there is. It’s called mindfulness meditation. (I hate the words mindful and mindfulness, but that’s a different post.) You simply sit down in a quiet place, where you won’t be disturbed, and close your eyes and let your mind rest on your breath, until eventually your attention wanders away (it always does, it always will), and eventually you also notice your attention has wandered away, and then you return your thoughts to your breath. You can also notice your body, and notice how the out breath brings relaxation it, until eventually your thoughts wander away again, and the cycle starts all over.

Learning to meditate was difficult for me. When I sat down without doing anything—no reading, tv, even sewing to distract me—my mind instantly filled with all my fears and anxieties. And there were a lot at that time. I was twenty seven, could no longer work, had moved in with my parents, could barely walk and couldn’t even cook a meal for myself. And worse, I didn’t know what was wrong with me.

It is amazing that I stuck with it, but I had heard so much about the benefits of meditation that I kept at it. In time, and less time than you would imagine, the troubling thoughts didn’t bother me. That wasn’t to say that I stopped having them, but when they showed up I knew they were just the normal thoughts anyone in my situation would have, and I didn’t need to let them get to me. They were just thoughts, they came and went, and soon started to come less often and occupy less of my mind. They never went away completely and never will, but meditation allows you to put these kinds of anxieties in perspective, to neither avoid them nor give them too much weight.

Meditation was so difficult for me at the beginning that I found ways to make it easier. I always set a timer, and kept it short so I wouldn’t feel overwhelmed. “I can manage 5 minutes,” I’d tell myself. Often when the timer went off I would already felt so much more relaxed that I wanted to keep going. I would set another 5 or 10 minutes on the timer.

The best crutch was audio tapes. Andrew Weil and Rodney Yee both have excellent tapes (now maybe CDs or even MP3s) of breathing exercises. They walk you through, step by step, when to breathe in and when to breathe out, and give you imagery to think about. You don’t have to do anything on your own, the tape will guide you the whole time. This isn’t strictly meditation, but it will induce the same kind of relaxation you’re going for, and is much easier to do if meditation seems too difficult.

A few other tips for meditation:

*Sit in the most comfortable chair you can find. I sit with an ottoman under legs too. It’s not about asceticism or a spiritual journey for me, it’s about getting myself to relax so I calm my nervous system and maximize my immune system.

*Make sure you won’t be disturbed. Turn off your phone, the radio, tv, and tell your family you will be meditating so they don’t barge in and ask you what’s for dinner.

*Don’t stress about whether you’re doing it right or wrong. Whatever works for you is great.

*Listen to Pema Chodron’s talk, “Pure Meditation” from Shambala for a more thorough and insightful description of meditation, its process and its benefits.

PS: I am posting this quickly, without a chance to put in hyperlinks to the audio-recordings I've mentioned. Hope they can be found easily on the internet and I will try to get the links in soon.

THE FIRST WEEK ON ROCEPHIN

2009-05-28T11:31:00.000-07:00

For the past ten months, I have been giving myself an injection of the antibiotic Bicillin. Despite some rocky early episodes, the thrice-weekly Bicillin shot quickly became routine and I was glad to be on it as my strength slowly improved. At about the eight month point the drug started to lose its effectiveness. I added in the antibiotic Zythromax to bolster the effect of the Bicillin, and a few weeks ago I added Plaquenil (an antimalarial that can also treat Lyme), but my body still needed more effective medicine. The original plan was to continue this course until the end of June. In mid-May I decided to skip the last six weeks of Bicillin and instead start the Rocephin right away.

Rocephin can be administed by IV, but this means getting some kind of plastic tube put into my veins and left there 24 hours a day for the duration of the course of antibiotics. I have chemical sensitivity, so even the smell of plastic makes me feel unwell. The idea of implanting a plastic tube in my body gave me the heebie-geebies.

The other option was an enormous daily injection of 5 ccs of pain-killer mixed with Rocephin in powdered form. Last Thursday The Poet and I went to the doctor's office so he could learn how to give it to me. It is a strange kind of intimacy to have your loved one give you an extremely painful injection every morning, but I am grateful for it. This in one that I just couldn't do myself.

The first couple days on the drug were rocky, as I expected. Some of the anxiety and despair I felt when I first started Plaquenil came back on days one and two, and I had, as usual, some trouble sleeping.

Day three we left for a weekend trip to Portland, and that distracted me enough to keep the anxiety at bay. Whenever I felt my mood plummeting, I told myself I was on vacation, I hadn't dragged The Poet with me to another state to have us both be miserable, so I should give an outward show of cheerfulness at least. And you know what? It worked. We had a good time and my anxiety melted away completely. By Sunday I noticed that my energy was generally better than I expected.

For the past five days I have felt better, and more consistently better, since I don't know when. My night time sleep is starting to even out, I haven't needed a morning nap, and my days have felt more productive than before.

Tips:

The biggest trick I've learned is to move around after the injection. The Poet gives it to me in the morning before he goes to work, and after that I try to be active, even if its just watering the garden. Yoga helps, as do a few minutes meditation before my afternoon nap and before bed.

For those who are chemically sensitive or who have a stressed out liver (and who doesn't) procaine can be used in the injection solution instead of the usual pharmaceutical pain killer. Procaine is non-toxic and breaks down into B vitamins. Ask your doctor about it or leave a comment for me if you need more details.

ON WHY I SHOULD LISTEN TO PEOPLE WHO KNOW MORE THAN ME

2009-05-26T23:12:00.000-07:00

For weeks my physical therapist, Robyn, has been bugging me about my shoes. The first appointment I had with her she told me there was a Mary Jane shoe by Dansko that would alleviate my tendonitis.

She told me the same thing on the second and third weeks, and the fourth and fifth, always with a smile and laugh, never with an I-know-better-than-you attitude. Nevertheless I resisted. My excuses being I liked my old shoes, I had no time to go shoe shopping (I truly didn't), I didn't want to spend the money, and I had a problem with shoes with an elevated heel.

The last excuse was the biggest and most legitimate. Even the lowest heels did something to my posture that made me exhausted. I always chalked it up to the fatigue from Lyme disease and gave up on anything but absolutely flat shoes.

So I held out. I wore the flimsy, converse-style sneakers I already owned and Robyn had reluctantly conceded might be OK. Weeks went by and my tendonitis slowly got better, then got a little worse, then a little better and then worse again. At last I had to admit it might be worth giving the Danskos a try.

When I put them on, I was amazed. My feet simply felt good. Walking around in them made my lower legs actually feel stronger, and made me feel happier. I kept them on all day, and went for a long walk in the afternoon.

After the walk my heels hurt and my Achilles tendon felt cramped. It was the elevated heel on the shoe.

I stretched my Achilles gently, and again before bed. I stretched them when I woke up in the morning, then decided to make a leap of faith and put the Danksos on for second day. I kept them on until the end of the day.

My calves ached here and there, and my Achilles tendon still needed stretching, but by the third day, my body had adjusted.

I am now wearing these shoes every day and I love them. I feel stronger when I have them on, my legs feel stable (there’s no other word for it) and I feel just a little bit more relaxed and confident, all the time. It’s great.

Post Script on the Tendonitis:

This has not cleared up entirely yet, but the new shoes have been a big—well—step forward. I am continuing with the myofascial release and physical therapy and making slow progress that has nonetheless been consistent over the past month. Robyn has admitted my recovery is slower than most peoples’, and we’ve chalked that up to Lyme disease. It will likely be months more before I am dancing again. Meanwhile, I’ve rediscovered the joy of yoga and am getting reacquainted with sit-ups and push-ups.

TAKE ME OUT TO THE BALLPARK

2009-05-18T16:39:00.000-07:00

My last post was bleak. Up until Saturday afternoon I was feeling at the end of my rope with the side-effects of plaquenil. On Friday I had a session of SRT (more on this wonderful relaxation technique in an upcoming post), which lifted my mood and helped me feel I was stepping out of the morass of crazy thoughts I’d been having since I started plaquenil.

But it wasn’t quite enough. I woke up too early on Saturday morning, feeling terrible again, spent too much time trying to get back to sleep, and by the time I was out of bed The Poet was heading out the door with a stack of books in his hand. He grumbled something about needing to have time to himself. I know from experience to let him go at these moments, no matter what I’d planned or hoped for the day. We call it “Poet Time” when he goes off for the day to read and write. He’s usually home around 4 and in a good mood once again.

I, however, was not in a good mood. I called friends to find someone to go for a walk with me, but ended up on my own, feeling more and more blue. I ran an errand, read, did yoga, cleaning the kitchen and tried to nap. I just barely dozed off and woke up feeling even worse. I began to cry when I got out of bed—and there were those crazy thoughts from the plaquenil again. At least I had sorted out that it was the plaquenil and not the state of reality that was turning my thoughts black, but it didn’t seem to make me feel any better.

“Just keep going,” I told myself, and started packing my gym bag, hoping exercise would help. Just then The Poet came home. I expected to find him cheerful, but he seemed even worse than he had been in the morning. I didn’t know what was going on, but I knew better than to ask. .

Usually on weekends we invite friends over and sit on the floor around our coffee/dinner table, we eat and talk and laugh and the time flies by. When it’s just the two of us we go out for Indian food, sit in a booth and read books together. It seemed like we were heading for the second option, which I didn’t think would lift either one’s spirits.

“Come on, let’s do something different,” I said. "Let's go out somewhere." I was willing even to splurge a little to get us out of this funk. After calling the opera and finding there were two tickets left for $300, we decided on baseball. There were plenty of Mariners’ tickets for resale on craigslist.

Leaving The Poet in charge of buying, I ran off to the gym for the quickest of workouts and then rushed back home. There was the usual hassle of taking all my medications and being sure I had my water bottle before we could leave, nonetheless I was excited. At age seven, I could recite the entire roster and vital statistics of the 1980 World-Serries Champion Philadelphia Phillies and I loved to go to the Baltimore Orioles games and cheer for slugger Eddie Murray.

Once we were on our way to see the Mariners I was truly happy. So of course I started to sing “Take Me Out to the Ballpark.” Only The Poet, being from Egypt, didn’t know the song. I tried to explain the importance of it to him, but he was still in a grouchy mood and didn’t want to listen.

“I know my own songs, but they’re from Egypt, so nobody can sing them with me,” he griped.

“But this is the baseball song—you need to know it if you’re a baseball fan!” I told him. It was no use. He wouldn’t let me teach it to him, which maybe is understandable, given the way I sing.

As we got closer to the stadium he cheered up. It was a beautiful, sunny evening, perfect baseball weather.

I called my parents and told them we were on our way to a baseball game. They said they would sing the song for The Poet. I handed the phone to him as they started to sing, but he quickly handed it back to me. There were baseball fans j-walking in front of us, a parking attendant signaling him to go one way and a policeman signaling him to go another. Better to be ignorant of the lyrics to “Take Me Out to the Ballpark” than to get into an accident on your way to the game.

We drove in circles and finally found a questionable parking spot on the street, then rushed to the stadium in time for the second inning.

It was as good as I had hoped. The Mariners didn’t win, but there home runs and double plays, and peanuts and crackerjacks (which of course I can’t eat anymore), and lots and lots of cheering. We did the wave, and when the seventh inning stretch came around, The Poet was surprised to hear the whole stadium singing my annoying little song. The lyrics were on the TV screen; he got to his feet and sang along. I looked over at him and he was smiling.

*******

We went to bed considerably cheered up. As we headed home from the game I remembered the last baseball game I had gone, about five years ago, had been a disaster. To my Lyme-sensitive ears the roar of the crowd and the loudspeakers was unbearable— I went home exhausted and with a headache. This game had been no quieter, but entirely different. It had been fun. That is one Lyme symptom that has simply gone away—extreme sensitivity to noise.

I woke up too early again the next day, but instead of trying to get back to sleep, I just got up and started writing. When the Poet got up I suggested we go down to the Pike Place Market for breakfast, something we hardly ever do because I usually don’t feel that great in the morning. This morning I decided to ignore the aches and weariness, and I think just moving around a bit did me good. As the day wore on I kept waiting for plaquenil’s dark influence to take over my brain again, but it didn’t, nor has it today.

For the past couple weeks I have been working hard to combat plaquenil’s side effects—yoga, sauna, extra exercise, extra charcoal capsules and meditation. But sometimes what you need is to stop thinking about it all, break the routine and just have a good time.

ON PLAQUENIL

2009-05-15T14:16:00.000-07:00

When I started this blog I resolved not to write when I was down. There are plenty enough cries of anguish on the internet when it comes to chronic illness, and I’m not sure it does anybody any good, particularly not the readers.

Suffice it to say, things have been a little crazy around here for the past few weeks, and not in a good way. Since I've added Plaquenil to my mix of anti-Lyme drugs, I have despaired. Not because I am feeling worse physically-- not at all. This drug messes with my brain, and I find myself swinging wildly between the bleakest thoughts and a buoyant sense of progress toward a bright future, and back again to feeling my life is nothing but useless suffering.

I am figuring out how best to ride this out. In the past I have relied on patience and attitude to deal with fatigue, insomnia, and any number of physical sufferings. The problem with Plaquenil is it takes away my good attitude and my patience. So far, all the usual naturopathic and homeopathic tricks have made little headway. I took Plaquenil before, about a year and a half ago, and Carolyn Humphreys did something magical to calm down my system. I have not been able to replicate it at home.

I’m starting to think the way through the next little bit is beyond the bounds of things I’ve considered before. I have a few ideas I’d like to try and if any of them work I will blast it loud and clear.

Meanwhile, despite not having had nearly enough sleep, I have a strong desire to make some gingerbread, so I’m off.

*******

MARVELOUS MELLIFLUOUS MOLASSES GINGER BREAD (not for the faint of heart)

1.5 cups flour (I use brown rice or millet flour plus a teaspoon Xanthan gum, but your favorite whole grain flour will do)

1/2 teaspoon baking powder

1/2 teaspoon baking soda

1/4 teaspoon salt

1 teaspoon (or more!) ground cardamon

1/4 teaspoon ground clove

1 stick butter (coconut oil can be substituted)

1 large egg

3/4 cup molasses and honey mixed

2-3 Tablespoons fresh ginger, minced or shredded

Bake in a buttered bread pan at 370 for 25 to 35 minutes

Let cool before turning out of pan onto a cooling rack

Today I added 1 teaspoon ground coriander and used mostly molasses so the bread came out very dark and spicy, just the way I like it. If you want a sweeter, milder bread, cut down on the ginger and molasses and increase the honey.

LIVING INSIDE THE BOX

2009-05-01T09:50:00.000-07:00

At my appointment with Dr. Martin Ross last week I asked him if Lyme disease was causing the ongoing Achilles tendonitis that has brought my dancing to a halt and curtailed most of my other physical activity. "Absolutely," he said, explaining that Lyme causes inflammation, which often effects tendons as much as it does joints.

So here it was again-- Lyme, my most intimate relationship, so invisible, so close, my old friend and my greatest enemy. Knowing for sure that Lyme was the cause of my latest problem shifted my perspective. It was an explanation at last for what as seemed so very strange to me. In January the pain in my heels came out of nowhere, for no apparent reason, and in the months since I have found no easy treatment for it. I've made small gains with physical therapy, but progress has been slow and frustrating. If the problem is Lyme than it is deeper than I thought, but there are also more ways to treat it.

For the past two years I have been beating Lyme with determination, patience, a bit of intelligence and (unfortunately) lots of cash. Recovering from Lyme has been the first priority in my life, not out of choice, but out of recognition that there was no other way. For the last six month, however, I'd been trapped in a real estate venture that often forced Lyme into onto the back burner. There was no way to say that the tendonitis was a direct result of that, but now was the time to redouble my efforts.

Thinking I was on familiar territory, I started the week with a plan to get the upper hand on Lyme and tendonitis:

1) Add plaquenil to my medical regime as Dr. Ross had suggested
2) Add a high dose of turmeric to my supplements, to control inflammation
3) Get a bike so I could exercise outside without having to aggravate my tendonitis by walking up hills
4) Stretch, stretch, stretch

Each day I checked an item off my list, feeling satisfied. It was all about keeping focused. On Saturday I filled my plaquenil subscription, on Sunday I made up my own capsules of organic turmeric bought at the co-op. I had fewer side effects on the plaquenil than I expected, and by Tuesday my energy was even improved, apparently thanks to the plaquenil. On Wednesay morning I walked to the neighborhood bike store for a helmet. When I mentioned I was riding again for the first time in years, I got into a conversation with the mechanic about Lyme disease and how I was recovering from it. As I joyously mounted my clunker craigslist bike on Wednesday afternoon, I thought I had it all figured out.

By Wednesday night my heels and lower calves were hurting again. It seems my brilliant solution to exercise—to ride a real bike, outside—had set me back again. Just a little, but enough to give me pause.

My legs and lungs and heart are longing for long, hard exercise, the kind that would get my blood pumping and make me feel high from the joy of motion, the kind that would have me sleeping deeply at night and leave me a little stronger, week by week. I long, in fact, for the kind of exercise I was doing in January before the tendonitis started. I have to hand it to Lyme—it is a clever adversary. Just as I was turning that corner where my body could at last get stronger of its own accord, Lyme has managed, in turn, to hobble me again.

And there is nothing to do but accept that.

On Sunday, as I packed capsules full of turmeric, I imagined writing a blog post about will power. Instead I am writing this one, about limitations. Now it seems apparent it is not the power of my will that matters, but its flexibility. It's the same game I have played for years: recognizing my limits and working within them, and finding the happiness to be had there.

For the foreseeable future I can't go dancing, or for long, hilly walks, or ride a bike outside. There are other ways to enjoy being outside, however (like writing a blog entry while sitting in the garden, for example), and other ways to enjoy being in my body. After all, two years ago I was living with much greater physical hardship than this. Once I’d remembered that and accepted that riding an exercise bike was the best thing for me for now, I enjoyed my stationary bike ride at the gym more than I had before.

A NEW LEAF

2009-04-24T17:13:00.001-07:00

Here's the view from my window: it's Spring in Seattle! I want to plant seeds and dig in the dirt, and jump on my bicycle and fly thorugh the bright air on two wizzing wheels!

But my heels hurt when I work in the garden and I have no bike. Nor have I had energy or time to buy one, even though I had planned to this week.

This Friday afternoon has me feeling tired and a little blue, probably because I did not do what I hoped I would this past week. I had thought I would be writing and having fun. Instead, I spent the week going to doctors and feeling pretty exhausted. The conclusion: I need to ramp up my Lyme medication. Tomorrow I start plaquenil to kill the Lyme in its cyst form and in a few weeks I will change my penicillin injections for a stronger antibiotic.

For the past five months all my spare energy has gone to fixing up and renting an old, neglected and needy house. At long last, it is rented, the tenants are set to move in Saturday, my work on the yard ended on Tuesday. (Nevermind that on Thursday I realized the pipes to the upstairs bathroom were leaking. My builder Sean was there last night to fix it.)

As I labored through the winter and early spring, I longed for nothing more than time to sit down and write-- all the imagined blog entries that occurred to me at odd moments, and the short story that has been shelved for months on end. I knew it would be the first thing I did once the house was finished. Instead, as I put away my trowel and screw driver and made the last phone call to Sean to fix the pipes, my body has been screaming out for attention. That is the nature of this illness. Once again I'm coming to terms with that. And it is OK.

Next week I will be on new meds, but I will also have no doctor appointments. I will buy a bike, I will ride it, I might even plant some seeds, and above all I will write.

ON REIKI

2009-04-15T23:35:00.000-07:00

And therefore as a stranger give it welcome.
There are more things in heaven and earth, Horatio
Than are dreamt of in your philosophy.
--Hamlet, Act 1, scene 5

Several weeks ago, my friend Shifa taught me reiki level 1. Taught is a bit of a misnomer. In fact, the word that reiki practitioners use is attunement, which evokes tuning in, as to a radio station, or a frequency that is already out there. This is a closer approximation of my experience, although to me it seemed more like-- well, like being handed magic powers.

According to the text Shifa gave me, "reiki is the laying on of hands with positive healing intent," and "the traditional modality of reiki practiced today is transferred through a series of energetic attunements that open the receiver to become a channel for reiki energy." (from "reiki scroll" by Anna Dorian.)

So you may be wondering what this all means. When I have been on the receiving end of reiki, the giver simply has simply laid her hands gently on different spots on my body. I usually experience a warmth and tingling in the place of contact, and I become extremely relaxed throughout my body. The hands of practitioner can also feel hot to me, but I have been told that is the heat from my own body, or that it is the reiki energy that I am feeling.

Afterwards an overall sense of well being and blissfulness can remain with me for hours, and I sleep very well.

By undergoig the attunement, I was becoming a novice reiki practitioner, so that I would be able to do reiki on myself and others.

On the day of my reiki attunement, I was excited. I had a little more energy than usual, despite not having a good night's sleep in several weeks. I cleaned and tidied the apartment so that when Shifa got there it was looking its best, and I cooked food for us to eat afterwards.

We placed a chair in the middle of the living room, facing the picture window, for my attunement. Shifa instructed me to hold my hands in prayer position in front of my forehead ("my third eye") while she stood behind me and drew symbols in the air over my head. She then came around to face me and blew air in a vertical line from my heart up to my forehead. She repeated these steps three more times, and the attunement was complete.

I had expected that if I were to experience anything unusual, it would be during the attunement, but up until this point I felt nothing in particular. I couldn't even see the symbols Shifa was making over my head, so as far as I was concerned it had really only been sitting in a chair for a few minutes, holding my palms together above my face.

I was not inclined to get up from the chair, however, and within a few minutes a heavy sensation filled my feet and progressed slowly up my body. Then I felt very light, and felt laughter surging up in my chest. A moment later there was a comforting warmth between my shoulder blades, in the spot where I carry perpetual knots of tension. A moment later tingling filled my lower legs and feet, and a prickling seared the place on my heel where I'd had tendonitis for the past three months.

At last I got up and we both drank water. Shifa then showed me where to place my hands on myself or on another person to give a treatment, and we talked a little about the experience. She told me to practice by giving myself a reiki treatment each night as I went to sleep.

I felt slow and heavy after Shifa left, so I got into bed early. I tried the reiki on myself and was happy to feel a tingling spreading throughout my body. I was indeed able to channel the reiki energy, and I slept better than I had slept in a month.

All this raises the question: what energy?

There are several answers to this: 1) the energy that is out there (duh!)
2) universal life force 3) divinity 4) I don't know.

Personally, I prefer the last one. This is one of those questions, along with "do people have souls?" and "does god exist?" that most of us have gone back and forth on more than once and have even stayed up late into the night discussing with our college roommates. These questions are, ultimately, unanswerable. It is impossible to prove definitively that god does or does not exist.

Most of the time I don't believe in god, but I also recognize this comes down to a matter of belief; two of the people whose hearts and intellects I hold most dear do believe in some kind of divinity, and I respect that.

So much for god, what about the energy that I have absolutely, unquestionably felt when receiving a reiki treatment and after the attunement? The same energy that I am now able to channel?

I know it exists because I have felt it. For me the encounters with this gentle force have been, on the whole, positive. As to what the energy is, where it comes from, or where it is going, I can only say I haven't a clue. As usual, no has said it better than Shakespeare: There are more things on heaven and earth... Than are dreamt of in your philosophy.

The energy is there, I am glad of it, and I am humbled by it.

THE WEEK OF HEALING CONTINUES: REIKI

2009-03-28T22:41:00.001-07:00

On Wednesday my friend Shifa taught me Reiki level 1. This means I now have healing powers in my hands. As healing powers go, they are still in the developmental stages, but I have already had one or two mysterious, inspiring experiences when I was practicing on myself.

THE WEEK OF HEALING

2009-03-25T20:09:00.000-07:00

The week of healing began Saturday night, when I took that crazy boot cast off my leg and threw it away.

I had been wearing it for two days, and by the end of that time my leg was killing me. With every step the boot managed to bang up against my shin, no matter how much I adjusted the straps and Velcro and padding. I had also spent a good part of the two days crying and in a deep depression.

This was due the fact that even with a thick-soled running shoe on the left foot, the boot had my right foot so far from the ground that my hips were uneven. My sacrum hurt when I went up and down stairs. Having all my bones slightly misaligned skewewd the mysterious and delicate balance of my body, and this was evidently effecting my entire nervous system. There is a reason we wear identical shoes on each foot.

When The Poet said, “You should take that thing off, it’s not helping you,” I knew he was right. I wanted it to work, but it was a disaster. I can congratulate allopathic medicine for one more humongous failure.

Once I was free of the boot, I collapsed onto the couch, relieved and exhausted. The Poet kissed me goodbye and left for Egypt for a week. As I lay on the couch, taking in how much I’d just put my body through, I realized I needed to do things differently.

The experience with the boot and the MD who gave it to me was, in fact, typical of so many experiences I’ve had with traditional western medicine. The doctor himself conveyed to me that he didn’t have the time or inclination to really care about me or my injury, and the treatment he offered me was woefully inadequate and showed how clueless he and his field are about how the human body really works.

I’ve had this experience time and time again. (A few MDs have been exceptions, most notably Dr. Marty Ross, who is currently treating me for Lyme.) And time and again I have found ways to get better with help from practitioners who don’t have the glorious title of MD, but who are often more knowledgeable about the complexity of the body and how it functions as a whole.

The two days with the boot had also brought home a simple lesson to me: if I am stressed out, frustrated and in despair, how in the world is my tendon or any other part of me going to get better? I needed to do what it took to get myself out of that mindset.

I was already anxious about The Poet being away, as these are times when I often feel lonely and don’t sleep all that well. I’d made one massage appointment to alleviate some of that stress, and I decided I needed more of that. I would make use of my time alone to heal, both with appointments and by slowing down, focusing on my body and what it needed, and trying to put myself in a relaxed state that would promote recovery.

And The Week of Healing began.

Here's the schedule:

1) two hours of meditation and visualizations every the morning
2) three 90 minute sessions of myofascial release therapy for my calves and ankles
3) learning reiki level one from my dear friend Shifa
4) appointment with naturopath Amy Derksen to address insomnia
5) setting up physical therapy appointments for next week
6) baking breads with natural sweeteners, no more sugar!
7) sauna & lots of stretching my achilles tendons

I have had some difficult moments. Nevertheless I feel much, much better now at the halfway mark than I did at the start.

The myofascial release has been a godsend. With each treatment I feel my calves and heels are more relaxed, when I stretch my feet and ankles I am more flexible, and the pain in my tendons, while not gone, is breaking up and lessening. Also the work on my body has made me feel just plain happy, the way you can feel happy for no particular reason other than physical well being. I’m still not sure this will be the entire cure for my tendonitis, but I must be heading in the right direction.

For a long time I’ve been too busy to slow down and focus on what my body needed, and I have found myself feeling tired and overwhelmed, and complaining more and more. I was casting around for answers, but the most important answer was to pay attention to my body. Healing takes lots of time and patience, but I’m reminded that, as with so many things that are difficult at first, putting in the effort can get you into a groove, and the change you’ve been seeking comes around-- quickly or slowly-- but it comes around.

NEWS OF MY HEELS

2009-03-19T16:51:00.000-07:00

For the past two months' I have been suffering from tendonitis in my right heel. I had to stop dancing, which was the main source of joy in my life, and then give up long walks, a second source of joy. I tried to minimize aggravation, but as time wore on and I walked less and less and iced more and more, the pain did not go away.

Last week I tried acupuncture without much success. I have also tried myofascial release, which helped with some of the pain but my heel was still burning and aching when I walked too far, or uphill. Yesterday a pediatrist gave me this boot to immobilize the tendon entirely so that it can heal. I need to wear it all day long, everywhere, for the next two months. I am doing it gladly.

The greatest happiness for me since I started antibiotics for Lyme Disease has been to exercise again. After seven years of barely being able to stand up, to then feel my heart working and my body in motion was a joy that had no comparison. A few months into the antibiotics I started Lindy Hop classes-- during those hours I was happier than I can describe. As my strength built gradually over the months, I took more classes and spent more time each week dancing. No matter what else was going on in my life, if I could make it out to dance I could count on being immensely happy for the evening.

So in January when my heel started to hurt, I stupidly kept dancing, until I simply couldn't anymore. I rested it and tried again in a week-- only to make it worse. When I saw my naturopath, Amy Derksen, she said the Lyme Disease was further aggravating the injury and making it difficcult to heal. I started a second antibiotic to put the Lyme in check, and now, with the boot and a little patience, I am hoping this will do the trick. If I were the praying type, I would pray. I want to dance again.

HOPE OF RECOVERY

2009-03-18T15:09:00.000-07:00

In the last couple months I have spoken with three women who have just been diagnosed with Lyme Disease. Only one clearly recognized that this was a good thing. Her symptoms have been relatively mild (she is still able to work) but she has seen enough of Lyme in others to know getting diagnosed before her health has completely deteriorated is a blessing. Realizing she’s dodged a bullet, she is charging ahead with her treatment.

The other two, who have been sick for many years, greeted the news with more pessimism, skepticism, and even panic. This is understandable—Lyme is a difficult diagnosis to accept.

Diagnosis is the first step to recovery, and for people who have been in pain for years it should be welcome news. We all know, however, that it’s not that easy. With treatment so long, difficult and expensive, it is easy to feel discouraged before even beginning the recovery process.

For all these women, I wished I were a better example of unequivocal success—but I’m not there yet. After a year and a half of antibiotics, I am much, much better. There is no question for me that I made the right decision when I started the pharmaceuticals: it has changed and will continue to change my life. On the other hand, I am still sick, still injecting myself daily with heparin and penicillin, far from gainfully employed, and going through one particularly frustrating setback at the moment. So I can't just say, yes dedicate the next three years of your life to taking antibiotics—you’ll love it!!!

But here is someone who perhaps can. As of today, I am adding Lymie Lisa to my links page. She has recovered completely—or infinitesimally close to completely—from Lyme. She has a full time job. She travels, she acts in plays, cooks, baby-sits, decorates her house, takes beautiful photographs—in short, leads a full, busy life that anyone who hadn't been ill might lead.

I have linked to her posts about Lyme. You might want to scroll down to the very bottom, to her earliest post, as it is very encouraging. You might also want to read the other posts about her current, very creative, healthy life.

THE HOUSE IN WALLINGFORD

2009-03-12T09:50:00.001-07:00

Three months ago, I bought a house that is five blocks from our apartment. From the sidewalk you climb a long flight of stairs up a small hill to the front porch. Looking out from the porch, there is a view of the gracefully arching Aurora Bridge, the green trees of Queen Anne Hill, and that icon of the Seattle skyline, The Space Needle. The living room of the house has two large picture windows that show off the view and let in waves of sunlight.

I had wanted to buy a house for many reasons. Right now The Poet and I live in a tiny apartment that we love, but we are renting it, so I don’t feel secure that we can stay here always. I also wanted to have a home that was more energy efficient, with a dishwasher and little luxuries like screens in the windows and a stove vent fan that doesn’t sound like Hell’s Angels are arriving in my kitchen.

Besides, I thought it was the right time to get into the real estate market. If you can recall how things were in August, house prices were dropping, but the economic collapse had not happened, so it seemed like a good time to get into the game. I started looking.

And I looked, and I looked. I wanted to stay in Fremont, where everything is a pleasant, hilly walk from our door, and I can get my library books, groceries and exercise all in one trip. I looked for two and a half months, and saw some pretty awful places, or places that weren’t quite right, or had no good windows, or were tiny and overpriced. As I looked prices came down a little more, and at last I saw the house I wanted.

At that point I didn’t care that the house was old and badly needed renovations. I could update it myself, it would only take a month or so.

I didn’t have money to make the down payment and do all the necessary repairs, so I put in a very low offer. When, to my surprise, I got a counter offer just a few thousand above that, it seemed too much of a good thing to turn down. On the brink of actually buying a house, and one that need extra work on my part, made me extremely nervous. I talked it over with my parents and The Poet and decided to take the deal.

Three months later, I can’t believe how naïve I was. Looking back now, I wish I’d paid attention to how nervous I felt and backed off. In the last few weeks, as the renovations have dragged on and on and the final tally on the cost has been apparent, I’ve known I wouldn’t have undertaken this project had I been able to see into the future. And yet, there is no use thinking that way. I’d gotten myself into it and there is no going back. I simply have to see it through.

At some point along the way, The Poet and I decided the most sensible thing would be for us to rent the house. Taking on the mortgage would have almost doubled what we pay now in rent. I had hoped to defray this by making the basement into a separate apartment, but the other renovations cost so much that I had to put that off. With my medical expenses, and lack of a job, it’s best to keep other expenses at a minimum. We love our little apartment, so this isn’t too much of a hardship. To tell the truth, recently I haven’t minded washing the dishes by hand as much as I did when I started looking at real estate. (This is a testimony to improvement in my physical stamina. Dishes don’t seem so tiring when I’m not so tired myself.)

There are other advantages to staying where we are: being a few blocks closer to the library, the food co-op and the gluten free organic bakery; not having to move or buy furniture or rugs for a bigger space. I think we might even spruce up the extra room so that it’s a decent guest room and not just a place full of suitcases and stacks of old books.

Meanwhile, as I have suffered through the last few weeks of the renovations, I have often wanted to scream at people to stop asking me what kind of light switch I want and to stop calling me at 8 am when I am not yet awake, and not to expect me to make one more trip to Home Depot when I need be taking a nap.

In my exhaustion and frustration, and I have asked myself over and over why I did this. At my lowest moments I have felt that I’ve wandered far from my values and I am being punished for it. I have fallen into the trap of chasing after more: a bigger space, better things, but things—like pretty bathrooms and hardwood floors—that ultimately I don’t care about and I know won’t make any difference in my happiness or the Poet’s.

Yet deep down I know why I did this. It wasn’t the devil, or the trap of materialism, or thinking a dishwasher would change my life. It was one simple thing: I want to adopt a child. I know it can’t happen now, and because of Lyme disease having my own baby is not practical, but for some time I have carried a wish around inside me: to have a child once I am better, perhaps a six or seven-year-old, who needs parents and a home.

This would hardly be possible where we live now, with The Poet and I going through an intricate space-sharing dance each day, in a place so small we don’t have a kitchen table or room for a desk (now writing is done in the armchair or on the couch). The new house, although not large, easily doubles the 750 square feet we live in now, and would be perfect for a family of three.

Who knows if this will ever happen. For starters, I have to get over Lyme disease. Then there is The Poet, who likes the new house, but is only lukewarm on the idea of adopting a child. When we met, he was more enthusiastic about babies, although we both knew it might not be possible for me. As his work has been more draining and he has struggled through his own insomnia, he has begun to declare more vociferously that he does not want to have children because it takes too much time and energy. Still, on other occasions he has said that he would be willing to give foster parenting a try. (He is already a wonderful father to his son David, who unfortunately lives so far away that he only comes here twice a year.)

Then there is also my other dream: to write. When I think about what I am working towards, what I hope from my life when I am better, it is these two things: to be able to adopt a child, and to write.

But having a child takes money, and writing is the opposite of earning money. When I think about it truthfully, I probably won’t be able to have everything I want in the future. I bought the house so there might be room for a family, and yet if I want to write I would have been better off keeping my money in a CD and using it to buy time for writing once I am better. Now that the money is in the house, I don’t have that option.

“Don’t worry,” the Poet tells me. “The house will be a good investment if you give it time, even if we don’t end up living there. In a few years you can sell it and have more money back.”

He may be right, and yet I know that I will have hard choices to make once I’m over Lyme. I will need to sell the house if I can, or I will need to find some source of income, even if it’s part time. Ten years of illness will have its price, even after I am better.

These are things I cannot worry about now. I can only take small steps, as I am able, toward the things I want. For the past three months it has been fixing up a house. Now it is about finding someone to live in the house and turning my thoughts and energy back toward healing from Lyme disease. Meanwhile I am finding an hour, here and there, to start writing again.

LIFE IS FULL OF PLEASANT SURPRISES

2009-03-09T13:58:00.000-07:00

Last night I received an email that one of my short stories will be published in a literary magazine. My first publication in ten years, my first story publication ever!

Thanks go the Poet for encouraging me to submit it.

UPDATE

2009-03-05T16:56:00.000-08:00

Here's a list of my current prescription medications:

Bicillin (Penecillin injection) 3x per week
Diflucan 1x per day
Azythromycin/ Zithromax 1x per day
Heparin injection or sublingually 2x per day

At the moment my body is demanding two naps per day, which I am happy to do. The more sleep, the better!

For the past two months I've had tendonitis in my achilles tendons, primarily the right one. This started while I was dancing, but there was no particular incident that set it off. It hurt a little, then a little more, until I just couldn't dance anymore. I stupidly tried to dance on it a few days later and made it worse. I have since cut out all dancing and long walks, I've been icing it up to four times a day, and even used a far-infra-red light to stimulate healing, but it just won't get bettter.

According to my naturopath, Amy Derksen, I had a small injury or stress there, and Lyme disease swooped in and is now preventing the tendon from healing. The zythromax is supposed to help, but after an optimistic ride on an exercise bike, my heel hurts again.

Has anyone out there been through something similar? Let me know what might help!

HAPPINESS IS WORK

2009-02-24T22:14:00.000-08:00

(Originally posted as three separate entries)

After a time he chose to be happy, which is always preferable.
-- Julio Cortazar, Acephalia

When sickness got the better of me, it was with relief that I finished up my last news article and put my job aside—for just a short time, I thought. I was exhausted and my head ached constantly, but still I tried to spend as much time as I could scrawling out drafts of short stories in a notebook. I told myself that this was more restful than writing articles, even though I had to keep every muscle clenched as I strained beyond my capacity to sit upright in a chair.

As a newspaper reporter and the winner of a handful of poetry awards, I thought of myself primarily as a writer. To be a real writer and not just a reporter was more an ambition than a reality, but that was where my heart lay. Since I could remember, I had been a hard worker and an ardent student, loving to learn and experiencing a deep sense of well-being when I was surrounded by books and writing out sentences of my own. On the flip side, the thought that I might not always write was one of my greatest fears. In college I would become distraught if I went several weeks without writing a poem. I did not know how to be happy without writing.

Conventional wisdom has it that being a workaholic is undesirable, but my love for my work has made more and more sense to me in recent days, as I’ve mulled over a section on work in the Jonathan Haidt’s The Happiness Hypothesis. In his book, Haidt reviews scientific research to explore just exactly what humans can do to achieve happiness. Some of his advice is about nuts and bolts—avoid continuous exposure to loud noise, avoid spending time in traffic—but much of it focuses on the two most important factors in creating happiness: personal relationships and work.

This is work, of course, in the broadest sense of the word. It might very well be selling refrigerators or writing software code, but it is also playing sports, cooking, taking care of children, dancing, writing, carpentry, etc. Meaningful work is as important to people as love is. When we are immersed in complex and challenging work, we are as happy or happier than when we are eating caviar or making snow angels.

So it makes perfect sense that in 1999, although I no longer had the energy to race around doing research and interviews for news articles, I tried to do what would make me happy—keep writing. However, as I strained to sit in that straight-backed chair at the pine table in a small house in Mexico City, I grew more and more exhausted. As the weeks went by I wrote for shorter and shorter stretches of time, with longer breaks in between.

Soon I moved back to the US to live with my parents, having abandoned any hope of a quick return to journalism. And yet I thought of everything in terms of gathering enough strength to write. The moment I felt a little better, I went to the computer. In less than an hour I would be in a state of utter frustration, my head hurting and my mind in despair. I saw all the flaws in what I’d tried to write, but couldn’t keep my thoughts straight long enough to fix anything.

In time I realized that I was wasting those few precious hours when I felt OK on something that drained my energy. And just as draining was the thinking, waiting, and yearning for the chance to write. I would be better off focusing on what my body needed, which was rest, and more than rest—exactly what I didn’t know, but it was time I dedicated myself to finding out, without having my heart in a different place. In order to do that, I decided I would not write until I was better.

So it was that my greatest fear came to pass: I gave up writing.

PART 2: WHAT DO YOU DO?

What does it mean to stop working?

Before reading Jonathan Haidt’s book, The Happiness Hypothesis, I thought of it in concrete terms. Obviously, it meant giving up my source of income. For me, this had happened long before I gave up writing altogether. When I stopped working as a reporter and my money ran out and it no longer made sense for me to stay in Mexico, I moved back to my parents’ house. While for many people this might be the greatest blow, to me at the time it was not. If I had known I was going back to my parents’ house for the next five years, and to financial dependence on them for the next ten, I would have felt differently about it, but at the time I thought I would be with them for a few months at most, until I got well again.

Of course, work also gives us a certain, specific status, and connects us to a social network. I used to think of work and writing primarily in these terms. The illness left me helpless and jobless, while my friends graduated from grad school and got jobs, or left their jobs for school, moved away from DC, moved back to DC, got married. I stayed frozen in time—no job, no higher degree, no wedding and soon enough not even a boyfriend.

The simple question “what do you do?” which popped out at me every time I met someone, became the bane of my existence. “What do you do?” can simply be an attempt to make small talk, but it also means “who are you?” and “where do you stand in the social fabric?” When I stopped writing, I lost, in essence, my title. I lost my place in the world.

But I had always known that writing was more, even, than that. When I stopped writing I experienced a fundamental change that went beyond status or even self-esteem. Something at the core of my being had fallen down dead, irretrievable except in some dream future I dangled before myself merely for the sake of keeping going.

IT’S ALL JUST CHEMICALS

Whether or not it is crass to reduce our emotions to biochemistry, I learned from reading The Happiness Hypothesis that writing had been my daily source of dopamine, the neurotransmitter our brain releases when we are working that makes us feel rewarded—not by the outcome but by the process of our work. It is dopamine that brings that deep feeling of contentment I always associated with writing. When I was left without the daily happiness that writing gave me, and without the hope that I would feel it any time soon, I had to figure out how to be OK without it.

As the months became years and my break from writing stretched on, I never shook the feeling that the best, most essential part of me was gone, that I was temporarily a lesser person. And yet losing this one source of happiness forced me to find a different kind of happiness altogether. In all the previous years, when I was able to write, simply existing without writing was not enough for me. I had to write for my life to have meaning. Now I had to learn the value of my existence without writing.

It took a while. It was, in essence, learning to live all over again. Days and hours were no longer the precious raw material I wrung the most out of as I worked to achieve my goals. Instead, my time became as plentiful and abundant as the ocean, and as difficult to use as a stream of water flowing through nothing but my outstretched hands. My body was no longer a wonderful machine at my disposal, but a tiny prison, in charge of me now and relentless when I broke its rules.

Out of force I learned a different happiness. When you are physically unwell from head to toe, you quickly learn that adding unhappiness to the mix is a bad idea. I am not talking about screaming Serenity Now or frantically repeating the words Calm Blue Ocean. Nor was it about finding happiness in a set of good circumstances. I did have my blessings, my parents the first and foremost, but on a daily basis things were pretty bleak. I would have to find happiness in an entirely different way.

PART 3: A DIFFERENT KIND OF HAPPINESS

Piece by piece I have assembled my happiness, over time, with the patience and determination it takes to learn new habits. Once I accepted my physical and mental limits, I considered what I could do within those limits that made me feel better. I couldn’t walk or run, but most afternoons I could do certain yoga positions, and felt better after, so I did them daily. Whereas before I had mostly preferred time to myself and my inner world, I learned that now I could ill afford to pass up socializing, and I came to appreciate my friends and family in a way that I hadn’t before.

I learned to meditate and do breathing exercises, and gradually increased the time I spent on them each day until I was up to an hour and half. As I meditated, I could feel my thoughts shift towards the positive. Often these thoughts were close to fantasies about what I would do when I got better, but they were positive thoughts nonetheless, so I enjoyed them while they lasted even though I didn’t expect any of them to come true any time soon.

Even my taste in movies and books changed, as I switched from Ana Karenina to Pride and Prejudice, from Wim Wenders to Seinfeld, and from Michel Foucault to PG Wodehouse. I no longer had the luxury to brood or face down the dark side of life. My life was dark enough on its own, I needed anything that would lift my spirits and entertain.

I miss the part of me that ate Foucault for breakfast, but having my literary and cultural horizons expanded has been good. Not only is Wodehouse funny and lighthearted, he is a genius of a writer I would have passed up if I hadn’t become sick. Before I would have scoffed at Harry Potter and The Lord of the Rings as low brow or dweebie genre writing. Once I was sick, I read them for entertainment and appreciated them for the masterworks they are.

Another thing happened along the way: I learned to banish dark thoughts. As calmer, more positive thoughts increased, I realized that the times I let myself become upset about my situation were not helping me in the least, so I stopped getting upset. Of course I did have negative thoughts from time to time, but I learned I didn’t need to give in to them. I trained myself to notice when my thoughts became negative and to counteract them by focusing on what was good and what I could do to change things, or at least make myself more comfortable even if I was suffering physically. In time, this habit became second nature to me.

My friend Beth taught me to quilt, and my mother drove me to a drawing class at the neighborhood arts center. When I had a little energy, for about an hour a day, I sat up to draw. The rest of the time, even when I was at my worst and lying in bed, I could usually manage to sew by hand and found comfort in it. Having my hands occupied in slow, rhythmic activity was soothing.

Did these things give me the dopamine I was missing without writing? Yes, to some extent, but it was not about the work itself any more. Sewing was a way to make the time go by, to keep myself calm and happy. I took pride in what I made, but these were hobbies that served my purpose, not callings that bent my life to follow them.

So what does it mean to lose one’s work? In a way, everything. It is fair to say that for many of us, myself included, our work is who we are.

Without writing, I became a different person. Even today, I hardly recognize myself. I have become practical, engaged with the boring minutiae of health-related tasks that before I scarcely would have had patience for. The depth and complexity of thought that writing brought me is still mostly absent while I make my way without writing on a daily basis. If I let myself think about it, it would upset me, but I don’t.

It almost seems at times that I truly don’t feel things, besides perhaps my own physical suffering, as deeply as I did before I became sick. This may be in part because what I have been through physically has been so profound that it has drained me of surfeit emotion. But it is also because I have trained myself to stay happy, to avoid emotional extremes and instead keep my brain on the light side of things. This has been a survival technique, a way to get through many long, lonely years—and who’s to say it’s all that bad.

Although I don’t get to choose what kind of happiness I have, I did, in the end, get to chose to be happy, and that has been enough.

REMEMBER DECEMBER

2009-02-09T22:57:00.000-08:00

Here I am, dancing with my friend Dan. (No, this is not The Poet. Not only does The Poet not dance, but he doesn't look remotely like Dan, except perhaps in height. The Poet declines to have his photograph on my blog.)

The picture was taken at Killer Diller Weekend, a big swing dance weekend that takes place each December here in Seattle. A friend just drew my attention to it on Face Book, and it's made me pretty happy.

For the past month I haven't been able to dance due to tendonitis made worse by Lyme. I am working hard to get over it, and the toughest part is staying home when I wish I were dancing. Seeing the photo reminded me that I used to dance and will dance again. I remember how happy I was that night. In fact, dancing always makes me happy, even when I am screwing up and making a fool of myself.

Soon enough I will be back at it; right now I am settling for the stationary bike and sit-ups for exercise. Not nearly as fun, but getting me through.

HELLO AGAIN

2009-02-07T22:35:00.000-08:00

The work on the house is slowly winding down, and my thoughts have been turning back to this blog over the last few days. I've missed it. I've missed many things as I've been busier in the past two months than I'd counted on or have chosen, but I am grateful that I've made it through.

I have a feeling that once the house is completely done, I will find myself with more energy and time in my day than before this all started. Right now it feels like I never have enough of either to get through my to-do list, which has a knack for growing longer even as I cross things off the top.

The end is in sight, however, and I thought I would write this as my official declaration that once again I will have time to tend to my body and soul, and once again I will be posting here on a regular basis.

I'm glad to see Joe is back on his meds, and also that others whose blogs I follow are making it through the winter, alive and kicking.

I wanted to end with a link to a really good article I read recently on antibiotic resistance--something everyone should be concerned about, especially those of us undergoing treatment for chronic lyme. It's important to respect these precious drugs and use them safely, so that we can continue to benefit from them when it's necessary, and at the same time avoid the dangers of overuse when they're not necessary.

The article also contains one more compelling reason to stick with organic food. If I had any doubt before if those organic apples were worth the price, I don't now.

Here it is.

RENOVATION

2009-01-10T18:54:00.000-08:00

Since my last post two and half weeks ago I’ve been busy renovating a house. Too busy to keep up with the blog, busy to the point that I cherish having even an hour to rest and unwind, and my afternoon nap feels like one more thing to schedule. There are countless details to take care of and phone calls to make and appointments to be at. For years I have been saying that getting over Lyme disease is like having a job, and renovating the house is like having a second job.

I am managing to hold down both of them, but I am also glad that this won't go on for long.

Meanwhile, I found this definition at Merriam-Webster’s online dictionary. I got a kick out of how it applies to not only the house, but my own body and health as well:

renovate:
1 : to restore to a former better state (as by cleaning, repairing, or rebuilding)
2 : to restore to life, vigor, or activity : revive