WINTER SLEEP

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

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

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?

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

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.