40

My birthday is the day after Christmas, which means three days ago I turned forty.

Like all birthdays, the number attached this year was bigger than on the last birthday, but this number felt particularly big--bigger, I'm sure, than forty-one will feel. In fact writing "forty" out just now made me cringe a little, so evidently even seventy-two hours on, I have not quite come to terms it.
 
After the hubbub of Christmas and the strain of working my Byzantine medical schedule, naps, and uncooperative appetite around holiday traditions and family visits, I just wanted a day when I had as little to do as possible.

I didn't want to go shopping, although that's how I usually spend the day (because the best sales of the year are on my birthday). I didn't want to go to a museum and have to pack all my medicine in a bag and then rush home once the fatigue set in, I didn't even want The Poet to take me out to dinner as he had repeatedly offered, because I didn't want to make a reservation and worry about my dietary restrictions and whether I'd be hungry on time. I didn't really even want to talk to people, because conversation when I'm on the Samento-Banderol-Teasel protocol can sometimes be exhausting.

I've come to my parents' house to hibernate for a few months and that was exactly what I did. I hid out in my bedroom/study. I wrote a blog post, I looked for quotations for my memoir, and took an hour and a half nap. When I woke up I was still tired. I tried reading, and when I realized I couldn't really focus on the sentences, I gave up and just laid back against my bedrest, half-meditating, half-contemplating.

Most of the time my thoughts are in the mix. I think about my writing or my medicine, making plans with friends, what to cook for dinner, or when I'll go running and how best to take care of The Poet and Cleo. But the day you turn forty is the day you inevitably do some tallying up.

And these were the numbers that came to mind:

40 years of life
15 and 1/2 years of health problems
14 years of full-blown Lyme
14 years without gainful employment
6 years since diagnosis
5 and 1/2 years of treatment
213 days no-holds-barred treatment
60 drops of Samento per day
60 drops of Banderol per day
60 drops of Teasel per day

These numbers, especially the first part, are good grounds for feeling retropsectively sorry for myself.  This was no pity party, however, because I know I made the most of those oh-so-tough years. I can't quite call them lost years because I learned things about myself and about life, and I made the  most of what little energy I had.

It was also no pity party because in my mind, the last four numbers are good ones. I don't know if the Samento-Banderol-plus-Teasel protocol will work. Experience has taught me that the fat lady really does need to sing. But at least I can tell myself I'm doing all I can, the rest is up to the universe. And in the last few days I've had moments--a few hours here or there--when things in my body have felt different, that is to say, better.

And also floating through my mind was this bit of wisdom I'd found that morning, from Benjamin Franklin:

"He that can have patience can have what he will."

EASY VEGETABLE RECIPES

My mother asked me to make the vegetarian dish this Christmas dinner. Although many people in my family are vegetarians, I am not. But my sister, who is a vegetarian, would be busy up to the last minute running her bookstore, and I love to cook. I also claim, without being vegetarian, to be the family's biggest vegetable eater. While my vegetarian brother, sister, sisters-in-law, neices, and nephew are downing the cheesy pasta and bread, I am serving myself second helpings of salad and cauliflour and thinking about the next way I'll cook the delicata squash.

This is partly due to my restricted diet that allows no gluten and no sugar. But that's not all. You can be gluten-free and emancipated from sugar and still avoid vegetables. Not me, no siree! No matter how much the Poet teases me about my mild obsession with vegetables, I am not deterred. Vegetables are among the best things in life.

When I read about the diet most recommended for Lyme disease and many other illnesses, generally called the anti-inflammatory diet (which means you eat far more vegetables and fruits than meat or grains) I realized I had by instinct eating in the way that made me feel best.

Special foods when you are sick are a blessing and a curse. They make you feel wonderful but can wall you off from the rest of the world. It is difficult to go out because menus are perilous, portions for meat and french fries are gigantic while vegetables are "sides", and eating organic is astronomically expensive.

Staying home can be equally difficult if it requires cooking. But the recipes I made for this year's Christmas dinner are easy.

The first is socca, a very simple chick-pea cake. The recipe I found is so good it needs no amending, so here's the link:

http://www.theveganchickpea.com/2011/10/vegan-mofo-french-week-day-17-savory.html

In addition to this I made a dish of my own invention, which I call:

EXCELLENT EGGPLANT

2-3 many medium to large eggplants as you like, cut in half lengthwise
1-2 red or green bell peppers as you like, cut roughly into 6 to 8 pieces
2-3 medium onions with paper skins left on, quartered
3-4 cloves of garlic, roughly crushed under the heel of your hand
1/4 to 1/3 cup Pitted kalamata olives
1/2 cup parseley, in 1 inch dice, stems chopped to a quarter inch

The amounts of vegetables are not a cause for stress. If you like roasted bell peppers, put more in. Ditto for onions. It's your life!

Preheat oven to 375
Cut eggplant in half length-wise, salt for 30 minutes then rinse and pat dry
Meanwhile cut the other vegetables and parseley

Mix together:
1/2 cup red wine
1/2 cup olive oil
salt to taste and plenty of good quality black pepper
(The amount of oil and wine can be variable, so long as you have enough to generously coat your vegetables.)

In a large roasting pan, arrange eggplants and onions skins up, cut side down. Put the garlic garlic and parsely beneath the onions and eggplant so it doesn't dry out. Add the red peppers and olives in the gaps between the other vegetables and pour the oil and red wine mixture over everything, being sure to coat the onion and eggplant skins completely.

Cover pan with lid or aluminum foil.
After 40 minutes, start checking to see if it's done. When the eggplant is soft enough to almost fall apart when cut with a butter knife or side of a fork, it is done. The sliced sides of the vegetables should be nicely browned by then. Remove the papery skins from the onions and serve.

Variation:

Omit parseley
Omit olives
Substitute lemon juice for red wine
Substitute ground coriander for black pepper

This dish is scalable and can be made in large quantities as long as you have enough roasting pans to put two or more in the oven. It freezes well so you can make a big batch and freeze in small containers to have at a later date, any easy way to eat lots of delicious, healthy vegetables at home.

Enjoy!

painting at top of this blog by Sandra Galda

CLEOPATRA GOES TO WASHINGTON

 

 

Beautiful day, beautiful dog. Merry Christmas to All!

 

(Thanks to Gonzalo, the dog walker, for taking this fabulous photo!)

 

THE THIRD HERB: TEASEL

I have added Teasel to my herbal protocol, and it’s doing things the Samento-Banderol combination wasn’t doing alone. The sinus infection, which simply would not go away, not with eight different antifungal meds, not with nasal sprays or neti pots or extra long q-tips pushed up my nose, is now on its way out. I’ve been spending half my days plastered to the couch from the Herxheimer reaction, feeling the far back of my sinuses get itchy and drain; the other half of my days are mostly devoted to the busy-work of illness, with an hour salvaged here and there for writng.

A week ago as I was filling out a lab bill, I asked The Poet what our zip code was. For the life of me I couldn’t remember it, except that it started with nine and probably had an eight in it. I’ve also been extremely crabby on Teasel, and at other moments suddenly drowning in cry-me-an-ocean sadness. I’ve had a few days when I felt high—time seemed to be passing in a slow, ethereal, pace and simultaneous sprinting by too fast for me to take in. I couldn’t think ahead about anything, not even what I was going to have for lunch or what shoes to wear. On those days, I lay on the couch in a dreamy state with Cleopatra on my legs. A different week, I almost thought I was coming down with a cold: I had a sore throat, my sinuses were flowing, and I was coughing yellow phlegm out of my lungs. But these things were not a cold; they waxed and waned with each dose of Teasel until they passed.

With the Samento and Banderol, I felt the Herx mostly in my body. I gasped for breath in a moderately paced dance class. My back ached when I went out to run. My ribcage was so tender the Poet couldn’t hug me without me yelping with pain. (The Byron White herbal remedy called “NT Detox” helped with both these things.) Teasel, on the other hand, is bringing on more Herxheimer action in my upper body and head. It makes me glad I’ve been using the two-doctor approach. Dr. Ross (my MD) put me on the Samento-Banderol in the first place, and Nesreen (the ND) added the Teasel. I’d be interested to hear if anyone reading this has found other herbs helpful for Lyme disease. Comments welcome!

PROGRESS REPORT: SAMENTO & BANDEROL

Last May I started the Samento-Banderol protocol for Lyme disease. According to recent research, these taking these two herbs in combination is extremely effective at killing off “dormant Lyme,” meaning that last little bit of Lyme bacteria that’s so good at escaping the antibiotics. These two herbs are so effective, they’re actually better, in lab tests, than antibiotics are at killing off Lyme in a biofilm. (And the biofilm is part of what makes Lyme such a tough enemy.)

One of the early signs of effective Lyme antidotes is the Herxheimer reaction, which is when your symptoms of disease increase as the medication kills Lyme and floods your body with toxins from dead bacteria. (Here's a beautiful illustration of the Samento plant!)

Judging solely by the Herxheimer reaction I had when I started Samento and Banderol, they have to be just as good or better than antibiotics. I have also been deliberately going for as big a Herxheimer reaction as I could, based on a theory that this is the best way to kick an entrenched case of Lyme. Instead of increasing my Samento and Banderol liquid herbs at the recommended rate of one drop every other day, I increased by two per day. By July I was on the full dose, and by August the big “Herx” reactions seemed behind me. So far, so good.

Enter my naturopath Nesreen. When I told her about the maximum Herx theory, she agreed. “You have to feel worse before you feel better,” she said. She also admitted it’s a tough sell. She’s lost patients who simply won’t, or can’t, go through the healing-by-fire method.

(And I realize that Herxing on Lyme meds is in fact a luxury in our screwed-up world. Try doing that while taking care of kids, holding down a job, or keeping up with homework assignments. Until our society recognizes Lyme for what it is and your friends and family rally round with casseroles and babysitting and the world at large accepts that you cant keep up with your job or your school work, the way it would if you had any number of other serious illnesses, turning the volume up to eleven on your Lyme symptoms—so you can actually get over this disease—will remain a luxury.)

At Nesreen’s suggestion, I added the herb Teasel and this has cranked up the herx even more. More on that in an upcoming post!

When I lived in Mexico these dried Samento pods (una de gato) were for sale on the street as amulets. They were said to ward off evil, and I actually wore one around my neck for some time. I'd love to get another but they seem hard to come by in the States.

SMALL TRIUMPHS: SKY HIGH

 

A week ago my parents called me and asked how I was ever going to get on my plane to DC.

 

“When’s your flight again?”

 

“Eight a.m., but I have to get there ninety minutes ahead to check Cleo in.”

“So you’ll have Cleo, and then you’ll have all your bags?” Cleo is my new dog.

“Yup,” I said cheerfully, although I had already been fretting over this little piece of logistics for some time. I blame it on Lyme disease that I never manage to travel light. Besides all my clothes, which I have trouble cutting back on, I’ve got a smallish suitcase crammed with my thirty bottles of supplements and prescriptions. I have my six daily pill boxes which I pack into my carry-on the night before. I have thirty-six hours worth of heparin needles in case my bags are lost or I get stuck somewhere overnight. Same for my thrice-daily cholestyramine, carefully doled out into Ziplocs. I’ve got my no-gluten, no-sugar, no-preservatives, no-additives, organic breakfast and lunch. And normal junk: book, laptop, iPod, cell phone.

 

It adds up to two immensely heavy suitcases, a backpack, a shoulder bag, and a laptop case. A turtle is streamlined in comparison. An elephant would beat me to the check-in line.

 

And now I had this extra air-travel appendage: Cleopatra.

 

Experts agree: Cleo is awesome. They also agree she is an integral part of my Lyme recovery. This last few months herxing on the Samento-Banderol-Teasel protocol, it has made all the difference in the world to have her sleeping next to me, chasing her tail in the morning, forcing me out of the tiny apartment for walks and runs.

 

“Cleo is the best decision you’ve made in a while,” The Poet tells me a couple times a week.

 

And yet when leaving for a three month visit to my parents she is one more thing to manage at the airport.

 

“Who is going to drive you there?” my dad asked.

 

“I’m taking a cab.”

 

“Will the cab be big enough? Does the dog crate fit in a cab? Will it block the rear window?” he asked. “What are you going to do once you’re at the airport with all your bags and the dog and the crate?”

 

“Oh, well, there’ll be people around. The cabdriver will help,” I said. “I’ll give him a big tip.”

 

“He can’t get you to check-in,” my dad said. My dad was also of the opinion that there would be no roller-carts handy, curbside check-in might not exist at all, and there certainly would be some regulation against checking a dog curbside, not to mention a suspiciously heavy suitcase crammed with Vitamin C powder, turmeric capsules, and syringes. He said I needed to send a box or several boxes ahead of time with all my pill bottles and things, so I would have all my hands free to handle Cleo.

 

I didn’t send the box, but I did buy a super sporty, hiking-style backpack with a laptop compartment, forty-seven pockets, and bungee-cord lacing on the front. (Somehow I still ended up with three carry-ons.) I called the cab ahead and told them about all the boulder-ish suitcases and the dog and the crate. I told them to come at six.

 

And I worried. More than about checking in, I worried about getting up at 5 a.m. to walk Cleo, do my own morning medical insanity, and get all my boulders down the stairs and out the door for the cab all while feeling like hell on my Lyme meds.

 

Miraculously, I felt decent getting out of bed at 5. By 6, Cleo and I were out in the front yard throwing and chasing a ball, our mountain of stuff stacked by the driveway. And not only does curbside check-in exist, but the tall white guy working curbside at SeaTac airport is my new hero.

 

After the cabby pulled up to the terminal and heaved all my stuff from the cab to a spot that was an equally impossible distance from the cart stand and the curbside check-in stand, then wished me a Merry Christmas, I just stood there, stranded and with an extremely energetic dog on leash. If moved to far from my bags to get help, security would surely swoop down on my stuff and destroy it in seconds. Cleo was running and hopping in as many directions as her leash would allow, all the while giving out little nervous barks. It crossed my mind that my dad was right. It was impossible. And then the curbside guy dashed over to me and told me not to move. He went to-and-fro with suitcases and I.D. and even ferried my credit card over to the stand and brought the receipts and the check-dog forms and back for me to sign while I stayed with Cleo and her crate.

 

Easy peasy lemon-squeezy.

 

So now I am in flight to three months with my parents, which I’ve been longing for, sometimes maniacally, over the past few weeks. The Lyme meds are doing their job, which means my body cycles out of symptom hell several times a day. I am deliberately taking as high a dose as I can stand, because I’ve been treating this illness long enough. It’s time to kick it at no matter what price of present-day discomfort. But being in the house I grew up in, with my mom and other family around, is a kind of support not even Cleo and The Poet in Seattle can approximate.

 

DC here I come.

 

 

INJERA: THE EASY GLUTEN-FREE BREAD

The word on the street is that true injera is difficult to make. This is not true!

Really? you are saying as you scratch your head, injera is easy? I always thought you needed some serious cooking mojo to make that. I thought there was some secret to injera that no average muggle could master.

Not at all. Injera is not hard to make, it's a simple injera recipe that's been hard to find-- until now.

But wait, you are asking yourself, what is injera anyway?

Injera is the flat, spongy, circular bread traditional to Ethiopia. It is somewhere between a crepe and a pancake, it stores well in the refridgerator and can be easily reheated before a meal. It's a sourdough bread, which is part of what makes it so tasty.

Injera is made from teff, a gluten-free grain that is highly nutritious. (More on teff here.) If you go to an Ethiopian restaurant, they will serve you injera, but chances are good it won't be gluten free. In the U.S. at least, most of the injera has wheat flour mixed into the batter. (Sometimes it is made entirely from wheat.) You can make your own pure teff injera quite painlessly at home, however.

But why, you ask, would a person want to do that?

If you are on a gluten-free diet, like me and like so many others with Lyme disease or other causes of gluten sensitivity, then a simple, delicious bread recipe might well be welcome. If you are health conscious and obsessive about reading food labels, like me, you know that most gluten-free breads on the market are full of junk, and no more nutrious than your average white bread. Teff on the other hand is packed with protiens and minerals, and has a nutty, whole grain flavor that brown rice or chickpea flours can't hold a candle to. It has the robustness of a good whole wheat or rye, something I've missed sorely since I gave up gluten. Teff's taste is smoother and subtler than those to grains, however. Teff makes me want to jump for joy!

So how do you make injera?

Funny you should ask....


EASY INJERA RECIPE

STEP ONE: SOURDOUGH BATTER (Make two days ahead)


In a large mixing bowl, combine:

1 cup of filtered water
1 cup of teff flour

Wash your hands and use them to mix the flour and water together, smoothing out all the lumps.
Cover the bowl with a clean cloth, set on your kitchen counter and leave for approximately twenty-four hours.

While the earth makes a full rotation on its axis, your batter will show signs of fermentation. It will bubble, it will puff up, it will have a pleasant, sour, grassy smell. Some water may well separate to the top by the end of the twenty-four hours, and have a bluish-brownish tint to it from the teff. This is fine.

At the end of first day, stir batter back together (you will see bubbles) and add:

1 cup of filtered water
1 cup of teff flour

Again, mix batter together with clean hands until lumps are gone, cover with clean cloth, let sit at room temperature for approximately twenty-four hours.

If you want to enhance the sourdough flavor from the start, or if you want to make more flour for a bigger first batch of injera, repeat this step as many times as you like. You can add as little as 1/2 cup water and 1/2 cup teff flour per day, but remember the two basic principles: 1-1 ratio of flour to water; feed batter every twenty-four hours while it is at room temperature. Ifyou are impatient to have injera sooner, you can cook your injera after two days, using step 2 first (see below).

You are now on the path to having a good sourghdough batter. This is a living thing that you will keep alive by saving approx. one cup of the batter each time you cook and storing it the in refridgerator for next time.


STEP TWO: CHEATING A BIT

While I was figuring out how to make injera, I found many recipes on the internet that added quick-rising flour immediately before cooking, meaning adding wheat flour with a bit of baking powder and salt mixed in. Since we are making pure teff flour, this step will be a little different for us. Here we go:

Save at least one cup of sourdough batter in a jar. Put in fridge and mark the date on the lid.

Measure the rest of your batter. Per one cup of batter, add:

1 tsp baking powder
1/4 tsp sea salt (optional-- salt can also be sprinkled on bread at table to each person's taste)
stir briskly with large spoon or with hand held blender


STEP THREE: COOKING THE INJERA

Use a skillet or cast iron pan such as you would use to cook pancakes (or crepes if you have such skills) and a large lid that fits tightly on the pan. (I have found it's easiest to use a glass lid that is small enough to sit on the bottom of my largest cast iron skillet, so the seal is complete.)

Oil pan lightly with high-heat oil such as grapeseed or organic canola (non-organic canola is GMO, folks!). Put burner on medium heat. Test pan by flicking one or two drops of water. If the water sizzles and evaporates, pan is hot enough.( If oil starts to smoke, turn down heat.)

With a ladle or large spoon, pour batter onto skillet, starting in center and making a circular, outwards motion.

Stand patiently over your pancake and watch while bubbles form and the edges start to brown, about thirty seconds.

Cover with lid, set timer for seventy to ninety seconds. Do some dishes or straighten up kitchen until timer goes off. Once timer rings, remove lid, use spatula to take cooked bread from skillet and put on a plate to cool.

Rinse and repeat, rinse and repeat, until you have used all your batter.

Note: there is some finesse involved in cooking you injera, so the cooking time is approximate. My cast iron skillet tends to get hotter as I cook, especially once I've used the lid to cook the first pancake, so after that I turn the burner down to 3 on my crappy electric stove.

Bigger Note: this is homemade, whole grain injera. It's just not going to look like the injera at a restaurant. That's Barbie injera. This Naomi injera. The bread I cook isn't going to win any beauty contests. It's not perfectly circular and it's not giangantic. At first I aimed for making larger and larger bread, but then I realized I didn't have a container big enough for easy storage, it's harder to get off the pan, and the burner under my skillet wasn't big enough to cook it evenly. So now I just make injera about the size of the burner under my skillet, or about the size of dessert plates.

One cup of injera batter will make about five dessert-plate sized injeras.

Injera is delicious hot off the griddle, or you can cool it, layer it between waxed paper, and store in fridge in ziplock bag or large tupperware.

Refridgerated injera will keep up to nine days or so. I think it taste best hot, so I pop it back into the toaster for a bit and sprinkle with salt before eating.


STEP FOUR: REPEAT

Store the cup of batter you saved in the fridge. As I mentioned, there are living, healthy bacteria in this batter (just like yogurt) and you will need to feed them to keep the sourdough going. Every week or so, take the batter from fridge (it will have separated a bit, don't worry), transfer to mixing bowl, stir it up and add flour and water as in step one. You can cook more injera the next day, or you can return the batter to the fridge for the next week. I have gone as long as nine days between feedings and all was fine.


STEP FIVE: CUT OUT STEP TWO

Over time, your sourdough starter batter will be strong enough that you no longer need baking powder to help you form the bubbles when you cook your flatbread. You may notice the fermentation is going faster, the smell is stronger, or you might just feel ready to cook it without the baking powder. After you've fed your batter and reserved  your cup for future batter, you can stir up the remainder with a ladle and start cooking your injera directly, without baking soda. (If it's not spongy enough, no harm done, just add baking powder and try again some other time.)

This is what 100% teff injera looks like. Mine, as I said, is considerably smaller. (Photo borrowed from National Geographic.)

CLEOPATRA SAVES THE DAY

I have been wanting a dog for years. I grew up with dogs and was the only member of my family not to have one. I could barely take care of myself, how could I add a dog into the mix?

On the other hand, when you are sick you spend lots of time at home, alone. If you are a writer you spend lots of time at home, alone. It's not as exciting as it was for McCaulay Culkin. In fact, it gets lonely. It makes sense to have a pet.

"It's really too bad you're allergic to cats," the Poet kept saying. "A cat would be perfect for you." But I am allergic. A ferret? A gerbil? Tropical fish? None of these things conjured up what I wanted, which was companionship.

For a while I thought about getting birds, until my massage therapist for an inexplicable reason brought her two parakeets to work and had them in the massage room during my session. The birds spent the whole hour diving at the massage table (i.e. at me) only to swoop away at the last second, return to their perch and chirrup frantically until they were rested up for their next dive-bomb feint. No, I decided, birds were not for me.

It was a dog I wanted. As I got stronger and more active, a dog seemed in the realm of the possible--maybe just a glimmery figure barely within the far edge of that realm, but within the realm nonetheless. And the trick, I told myself, was getting the right kind of dog. Dogs came in all shapes, sizes, ages, energy levels, and temperaments. I could get a suitable dog. For example, not a puppy, not a puppy that needs to be potty-trained and walked at six a.m. and taught not to eat books or tear your clothes to shred. Definitely not a puppy. And not a Grate Dane either. We live in a tiny apartment.

And now is when I need to come out and say I hate lap dogs. I have friends with tiny dogs, and you, dear reader, might love tiny dogs. More power to you. I don't love tiny dogs. Anything can be said to yip I do not find comforting. Anything that yips gets on my nerves. Anything that is so small that I would have to slow down to walk it would get on my nerves, because walking slowly gets on my nerves. Walking slowly is high on my on-my-nerve-getting list. It might be number one-- or number three, after yipping and blue grass music.

And also I go running. I needed a dog that would run with me so I didn't have to walk a dog after I went for a run. There are just so many hours in the day.

Last March the Poet and I were at the Ballard farmer's market when we saw two dogs, spotted brown and white and in the forty-pound range. They were dogs that looked built for running. Not ghostly-skinny greyhound type dogs, but athletic looking dogs. Their owners had lean, runner-type bodies and were wearing jeans and windbreakers that were not the windbreakers they would wear while out for a run but announced nonetheless that these people were runners. Were distinct from the grungy REI hiker fleeces you see in Seattle.

I followed these people until I caught up with them and asked them about their dogs. Pointer, French Pointers, to be exact. Yes, they were great runners. "She just ran six miles with me," the man said, petting the smaller one. "And then when they're in the apartment they just want to curl up on the couch and take a nap with you."

This was my dream dog. I needed a pointer of approximately 40lbs. A 40lb, rescue pointer that was four years old.

On August 14th I adopted a 37-lb, two-year-old, black and white pointer-mostly mix. The rescue lady had named her Oreo. As in Nabisco, as in health-rotting, environment-destroying, soulless coorporate greedsters who call what they sell us food when it is really poison. (Yes, I loved Oreos too when I was a kid.) I renamed her Cleopatra, or Cleo for short.

Cleo has a good, strong bark, but she only barks at appropriate times, for example when someone's at the door. She loves to run with me. She chases her tale and catches it several times a day! She laps up my bathwater when I am taking an epsom salt bath and gets really upset that I don't let her into the shower with me. She licks the shea butter lotion off my calves and arms and is the reason I now have under-lotioned skin. She follows me from room to room in the apartment. When take a nap she climbs on my legs and slumbers with her head on my lap. When I write, she lies on the floor at my feet and chews her bone.

She also needs to be walked, which is good. Although she will sleep however late I manage to sleep, I have to take her out every morning, and no matter how crappy I feel when I get out of bed, I'm always a little better for having walked a few blocks and then let her off the leash to chase her ball for ten minutes in the yard.

Last night I got home and was in a Lyme-medicine induced terrible mood. Plus I'd gone to the dentist. The dog walker had taken Cleo out for a long time that morning (one of my bargains with the Universe was to spend a small fortune on dog walking in exchange for having a two-year-old dog while undergoing intense Lyme treatment) so I thought I didn't really need to walk her more than a short bathroom outing. But not so. Cleo has this way of hurling herself at me when she needs to burn off energy. I was just going to have to walk her. I was tired and hungry and in tears over some stuff that had gone wrong with my rental property and it was rainy in Seattle for a change and I wanted to stay home and be miserable. I had to walk her instead.

I put on my raincoat and found my Dorothy Sayers audiobook on my iPod and got Cleo leashed up and out the door we went.

A friend had once told me about a scientific study that concluded people who own dogs walk more. It is true.

There is also a study, or two or ten thousand, that says walking elevates your mood and balances your blood sugar and lowers your heart rate is good for what ails you. It is true. I felt a whole lot better after Cleo and I walked for half an hour.

OUT TO LUNCH

Wow-- my last post was August 8. I have been woefully neglecting the blog while I worked hard on the 5th draft of my memoir and searched for an editor to help me get it ready to send to publishers. I'm glad to say I found a top-notch editor who hand picks her clients. I will be paying a small fortune to work with her but somehow it seems like I'm the one who won the lottery. Getting the book published is still a long shot, but with Marjorie working with me I know I'll have the best of all possible chances. So last week I finished draft 5. I will send it to Marjorie soon and she will read it in January. So can now get back to the blog. I'm sure the universe is wailing away for more tales of my battle with Lyme! More posts coming up, on this same bat channel.

HUMBLING MOMENT

I just picked up the New Yorker and read a paragraph about a man in Burma who was released from prison January 12th. He had been a literature major in college (like me), when in 1998 he was arrested for taking part in a demonstration. He'd been in prison since then.

1998 to 2012, I thought. How many years is that? Then I realized it's an easy number for me to calculate. 1998 was the year my health fell apart, the year I was forced to stop working as walking got harder and harder until I could barely leave the house. Since then I've been on an Odessey of diagnosis and recovery. Little of it has been easy.

And yet I have not been in a jail, beaten, starved, cut off from friends and family.

A humbling moment.

Please click on this link to learn more about Inanna House, a non-profit group that is trying to create a holisitc center where people with Chronic Lyme can go to heal. Lord knows I've been longing for this very place over the past few months! Even if you can't contribute, just clicking on the link and looking at their page can help their cause.

Thank you, Sarah, for all the work you have put into this.

APART TOGETHER

Written in the air between DC and Seattle, posted a few days later

It’s not easy being the partner of someone with Lyme. Fifteen different times a day I have to stop to take pills and powdered medicine drinks and injections. My nap schedule and medical routine make day trips and weekend getaways impossible. And when my Lyme came back in February and March, I dropped into flash depressions, crying at suddenly feeling too sick to move around, or wailing how about how horrific and lonely life was. Just all part of my symptoms, but difficult to be around and not take personally.
Add to that scenario the Poet’s own emotional journey, about things from his past that are mostly separate from me and entirely separate from Lyme disease. Recently, this aspect of his life has been busting into the center of our relationship, duking it out with Lyme disease over which is the most bad-ass of all. I’d been trying to give him the support and attention he deserves, but Lyme is so emotionally draining that I didn’t have much psychological fortitude left to spread around. For his part, the Poet was doing all he could to support me, and while succeeding more than I was, not quite managing either.

So at the start of April I announced I was flying back to my parents’ for a few weeks. He resisted, said he’d rather have me there and that I deserved to have love and doting kindness from him. What you deserve and what your boyfriend can actually give you are not always the same, however. I could see he was burned out. He wanted romance and spontaneity and I was giving him big, sexy pill packs. I couldn’t give him the kind of spontaneity he wanted, so I interpreted his push for romance as a need for things to just not be about illness. It was time for me to lean on someone else for a while.

My original plan was to go for three weeks, but at the end of that time the Poet told me he missed me and loved me, and he appreciated my wisdom in making the decision to leave and give him the break he hadn’t realized he’d been starved for. I was so wise, in fact, that he thought I should extend my stay in DC. It was a bit of a surprise, but also a relief. I was feeling better being near my mom, who is good at doing logistical things to make being sick much easier. In DC, I could make things all about Lyme, which unfortunately was what I needed.

So we agreed, with lots of affection, to be there for each other and away from each other. We phoned and skyped and texted. The Poet told me about his personal revelations, I called him up about the medical decisions I was making and talked over the questions I had while I worked on my memoir. We had many, many conversations about our relationship, what has worked and what hasn’t. We got to a level of greater ease and greater honesty. We read the same books (“A General Theory of Love,” which I highly recommend, and “Autobiography of a Face,” also excellent.) The Poet sent me orchids, I sent him freeze-dried organic peas. It doesn’t get any more long-distance romantic than that.

And now, after three months, I am on the plane back to Seattle. David is already there. I am on the high dose of my Lyme meds, Samento and Banderol, and will do all I can to bend my medical schedule so that I can function as step-mom and girlfriend in the evenings, after their camp and work are over. When David heads back to his mom’s, the Poet and I are planning a week long trip to Whidbey Island, or maybe Columbia Gorge. Somewhere we can be together and relaxed. We’ve already decided which books to read together, this time it will be Jorge Luis Borges.

SHORT PAUSE: CHASING THE HERX DAY 21

Yesterday I finished the first final draft on parts one and two of my memoir. I say "first final" because I'm sure there will be a second and third final draft, quite possibly a fourth. But the point is I made major changes based on feedback from someone who knows what she's doing. Up next is the third section. But before I started, I just wanted to say, "Hooray for me!"

I've been trying to make myself feel as sick possible on my Lyme meds, and I've found this to be a pretty unpredictable process. Yesterday, for example, I thought I'd feel OK, based where I was in my detox/medical schedule. Not so. Sometimes whole days are really rough. Other days I'll feel good for a few hours, then awful for a few, then good again.

Still, everyday I've had at least a half an hour when I can focus enough to do a little work on my memoir. For the past few weeks that's meant going through the manuscript and looking at just one aspect of it for coherence and consistency--how I describe a certain friend and tell her story, for example. This has leant itself well to the type of short windows of concentration I have right now.

The most important thing, which I have to keep reminding myself over and over, is that I can't put writing before medical considerations. Not now. I'm fighting to get my life back once and for all, so every decision has to be about hitting Lyme as hard as I can. I've told myself I have to increase the Lyme herbs, as tempting as it has been at moments to increase them slowly so that I can focus better on writing the next day, or have energy for babysitting my neice and nephew. But that's not where it's at right now. I want my whole life back, not just parts of it.

Still, it's nice that incidentally I've gotten a little work done.

IN THE GROOVE: CHASING THE HERX DAY 13

It's day 13 of trying to herx as much as possible. It's day 5 on Banderol, meaning I am doing the Banderol + Samento combination, and the Clarithromycin + Diflucan combination. I woke up today feeling very Lyme funky. It was nausea that woke me up, actually. Fatigue built up throughout the morning as I was writing. After a couple hours of slowing-to-a-crawl work, I called it quits and went into detox mode.

And this is what I mean by detox:

Water enema
Coffee enema
Vitamin C
Liver detox drink (Charcoal, Cholestyramine, Bentonite Clay, fiber, veggie juice, cayenne pepper)
Plenty of Magnesium, Quercetin, electrolyes, and 90 % dark chocolate (all this after lunch and long after the Cholestyramine drink)

Lunch was a giant plate of collard greens, raw beets, a little goat cheese. Dessert meant devouring half a lemon, including the rind. My diet isn't always this extreme, but on detox days I go with what I'm craving and it's usually maniacally healthy.

I rested for an hour after lunch, and that meant primarily icing my ear and back of head so the swelling in my lymph nodes will go down (I dozed off for a few minutes in the midde), went swimming at 4:15. It was like swimming with cement arms for the first twenty minutes, so I told myself not to worry about going fast (Ha! As if I could have!). By the second half, it was easy to pick up the pace.

After dinner I felt so normal I didn't even think about how I was feeling.

I've had this ongoing project of making injera-- Ethopian flatbread-- from scratch, including the sourdough starter, with 100% teff, which is the traditional Ethiopian flour. This is not an easy thing to do. Almost all injera Ethopian restaurants is made with refined wheat flour and therefore inedible for me.

I'd already botched the injera twice with dubious recipes I found online. This was my lucky third recipe, lucky third time. I'd started the whole process, with the sourdough fermentation and all, last Wednesday. Tonight was the night to cook it, so after dinner I set to work. I was so preoccupied with whether the sourdough part had worked and if I had thinned the batter enough and how long to cook the bread before putting the lid over the frying pan that and how long to keep the lid on the frying pan that I forgot entirely to think about whether I was herxing.

Just in case you've never felt the fatigue of Lyme disease, it's impossible not to think about the fatigue of Lyme disease unless you aren't actually feeling the fatigue. Trust me. I've got years of experience in this department.

I was so caught up in the beautiful fact that I was actually, successfully making injera, that it took me a full 45 minutes to notice I'd also pulled out of the herx. Completely. So completely that after letting the bread cool, layering it in aluminum foil and storing it in a tupperware in the fridge, I'm now spending twenty minutes writing this post instead of crawling to bed.

So take that, Lyme disease!

Now it truly is time for bed. In half an hour I'll have swallowed my next round of Lyme meds and be lying down to sleep. By morning I'll be back in the Kung Fu fight. I'm almost looking forward to it.

IN THE CRUSH: CHASING THE HERX DAY 6

It's been almost a week since my Eureka moment last Wednesday, when I decided I needed to get as big a Herxheimer reaction as possible, for as long as possible, in order to finally kick this last bit of Lyme. Since then, by ratcheting up my Samento (herbal drops) and Diflucan (prescription meds) I've managed to crank up the fatigue, joint pain, rapid heart beat, and noise sensitivity.

I've even had little shimmers of brain fog--when I couldn't quite put sentences together or mixed up some pretty basic words. I was sending a text to my mom yesterday and realized I didn't know how to spell "heaven." I think that qualifies as brain fog. I gave myself a silent cheer. Good for me!

I'm coming to realize that one of my biggest Herx symptoms is the crash depression. This one I'm not so good at cheering for. I suddenly get overwhelmed by how lonely I feel, how desperate my situation is, how terrible it is to have illness keep me from writing enough, how high the chances are that Lyme will ruin my relationship with The Poet. And on and on.

I try to just wait these times out, let myself cry, then get some exercise or do my detox routine. It helps a lot to have learned from Pamela Weintraub's book, "Cure Unknown," that it is very common for Lyme patients to experience increased psychological symptoms when they go on antibiotics. So yes, the even the depression is part of the Herx. I should welcome it as part of the healing process. Easier said than done!

CHASING THE HERX DAY 3

It's here! At about 7pm the fatigue slammed me, plus I have an aching low back, slight headache, am even mixing up words at times. All it took was increasing the Samento to 16 drops twice a day, and one more drop after lunch put me over the top. Now I have to be brave and stay on this high dose.

CHASING THE HERX DAY 2

I stayed up on the non-approved high dose of Diflucan today, approx 600mg. Made a BIG difference with my sinus/ear infection. I feel like something deep in my ear is finally shifting and my jaw is loosening up.

My sleep hasn't been too bad, but it's been intense-- like I'm going down to the bottom of a well while I'm alseep. I usually wake up spontaneously around 5:30 a.m., so this is when I take the Clarithromycin and Diflucan combo, plus the Samento. This morning on the high Diflucan dose I fell back asleep hard, and had almost-nightmares. One was that I was in charge of my stepson, David. He wanted to go shopping with me (this had to be a dream, right?) so I told him to come along. Then I completely forgot about him and he got lost. (Strange thing about that is I've written a short story with the same underlying plot line. No, I there's no shopping involved, but due to a bizarre illness, the protagonist loses track of her stepson and has no way to contact him. When I woke up this morning I made the connection.) The other dream, involving The Poet, was actually worse-- pretty terrible.

The funny thing is when I'm awake and take this same combo of meds my reaction is to fall into a vicious depression. Ha! I'd actually rather be asleep and have vicious dreams. At least when I wake up it's over and I feel rested!

I also got myself up to 15 drops of Samento 2 times per day (or per night in my case). No headache yet. A bit of fatigue, but I did my coffee remedy and went for a good long run with plenty of energy. Where's the herx?

CHASING THE HERX DAY 1

In the last twenty-four hours I increased my Samento by 4 drops, took the full dose of Diflucan at the same time as my a.m. Clarythromicyn because in combination the meds hit me harder, and I even took a 1/4 pill extra Diflucan. (Because I'd kept myself at a half dose for the first week, I have a few pills left over from this months' supply and I decide to put them to good use. And NO, I did not OK this with Dr. Ross, so he has absolutely no responsibility for my decision.)

I actually slept a little longer and harder than most days this past week. By the afternoon my legs felt pretty heavy-- perhaps the start of a herx. I went swimming for my usual forty minutes all the same. I didn't push myself to go fast, but by the end I had the energy to do a few laps at a quick pace.

As I'm going to bed, I can feel big changes in my sinuses, back inside the ear where the infection has been hanging on, impossible to kick. Now it's feeling as if things just might be loosening up there. I'm goind to stay on this illicit, slightly higher dose of Diflucan for a few more days to see if I can kick the sinus infection once and for all.

A BIG SHOUT OUT

Laurie is in the house! The house of Lyme, that is. My friend Laurie was in agony for years with a nightmare fibromyalgia diagnosis-- debilitating pain and migraines round the clock with no hope for recovery. Dr. Marty Ross just ran her Western Blot and it came back positive! You go girl! She's already on meds and herxing, but it's good to have some test results that say for sure she has Lyme, fair and square. She can now give fibromyalgia the raspberry. Here's to Laurie, and to a good, strong recovery and the end of pain!

FOLLOW YOUR HERX

Well, here I am back on the antibiotics after my Lyme crash in March, when I went off my Samento to do the Lyme test. (The test came back negative, by the way, but since I had horrific symptoms off the Samento, it was clear I still had Lyme bugs in my body.)

In my last appointment with Dr. Ross, he said we are now dealing with “dormant Lyme”—those last few spirochetes that make themselves into cysts or hide in biofilms, or just hangs out deep in your brain until you think you’re better and stop taking your antibiotics, and then they come out to play again. (Disclaimer: that last part about the brain is my speculation—not something Ross said.)

So the question is how to get at the last, nastiest bacteria. According to Ross, I have two options. One is a Samento & Banderol combination that has been shown in petri-dish experiments to kill Lyme in biofilms. The other is the Burrascano approach of pulsing. This means getting a good strong dose of antibiotics until you feel well again, then going off the antibiotics until you feel really sick again, which indicates the Lyme has become active and is no longer hidden in cysts or biofilms. Then you hit them with megadose antibiotics again.

And rinse and repeat. And rinse and repeat. Until Lyme is obliterated.

During my appointment with Dr. Ross, the Samento-Banderol approach sounded way more appealing. I mean, who wants to put themselves through the Burrascano hell? Dr. Ross also mentioned he’s had lots of patients get over dormant Lyme on Samento-Banderol. I’d pretty much decided for that option, although I wasn’t expecting to start it for a few more weeks.

For now, I’m now taking Biaxin (Clarithromycin) and Samento, plus Diflucan, which kills Lyme cysts and yeast. Yeast has turned out to be a component of this sinus infection it’s been taking me so long to kick.
But today I h
ad a brainwave—a brain tidal wave, actually. It happened while I was reading "Cure Unknown" by Pamela Weintraub. Weintraub is a top-notch medical journalist who herself had chronic Lyme disease. I’m reading her book partly because this is just a really good book that anyone with Lyme should read, and partly because she did the Burrascano pulsing and I wanted to get her insights into it.

I got to the chapter on pulsing today. You had to go off the antibiotics until you felt as sick as you’d ever been, Burrascano told Pamela Weintraub, and you had to go back on the meds whole hog, with the aim of getting a nice big Herxheimer reaction. And I quote:

“It was a grave mistake to keep the dose [of antibiotics] low, Burrascano warned, because that would selectively kill the weaker, more reachable germs, leaving a stronger, deeper infection behind.”

Well, in all my years on high dose antibiotics, I’ve never had a full blown herx. I’ve felt the meds hit me, and I’ve had to take extra naps, and worked like crazy to keep my lymph draining. I've had nausea and every now and then a headache, but I’ve never had the over-the-top herx so many other patients describe.

“This is a marathon, not a sprint,” Dr. Ross told me when I started my treatment. Another thing he’s told me, with each new round of antibiotics, is to work my way to the full dose at my own pace. “It’s your foot on the accelerator,” he said.

I took him at his word. I’ve always done things gradually, trying to keep my body—and particularly my precious sleep cycles—in as much balance as possible. There have been times when I’ve even backed down or changed antibiotics if things got too rough. When I was on Rocephin, I stayed on for ten months instead of the full year because suddenly, in the home stretch, my sleep went haywire.

But insomnia is one of my chief symptoms. At this point, insomnia is my toughest, most-hanging-on symptom, the cockroach that keeps surviving the nuclear fall-out. So it dawned on me, I shouldn’t have backed down those times. Maybe my sleep going haywire was a good sign. Maybe I shouldn’t have been so afraid.

I wish now I’d stayed on Rocephin those last two months in 2009, painful as it might have been. It might just have killed off that last reserve, the nastiest of the spirochetes that were screwing with my brain, that are still screwing with my brain.

So I'm rethinking how to take my meds right now. I’ve been easing myself onto the Diflucan, taking just half, then ¾, and taking it separately from the Biaxin because the two at the same time were knocking me down hard.

Now I get it that I want to be knocked down hard. Or rather, I want to knock the Lyme down hard, and to do that, I have to crash myself into the fray. If for no other reason than it’s one thing I haven’t done in four years of antibiotics and ten months of Shoemaker protocol. So it stands to logic I should try it, because what I’ve done just ain’t workin’ like it should be.

With all due respect to Dr. Ross, I’m not thinking of Lyme treatment as a marathon anymore. Lyme treatment is a rugby match. A really long rugby match. Call it a rugby tournament if want. So yes, it’s about the long haul, but it’s also about smashing hard and to that you have to let yourself get bashed up a bit. It's about scrumming it up and jumping into the chaos.

Let’s play.

ONWARD

In the midst of the chaos of the last two months, undoubtedly because of the chaos, I realized one thing. I must write again, and write more, at all costs. That whole cliche about the suffering artist, who feels her soul is ripped from her body if she can't persue her art-- that has been me.

The price of the past year's medical confusion has been writing. I've only done it in tiny snatches, and mostly not at all. The memoir I've had to box up entirely because the project just seemed too big.

Instead I've edited a handful of short stories, written two short ones, and used my spare fifteen-minutes a day to keep sending my stories to magazines-- one story in particular, called Maximum Love, which received many encouraging, personally-written rejections from editors who told me they liked it, it was so funny and original, but they just didn't have space, or didn't like the ending, or didn't know why this character said thus and such, blah blah blah.

I rewrote and rewrote that story, and every time I received a rejection I sent it to four more journals.

But mostly I didn't write. I kept saying, soon things will get better, be patient, it's just around the corner. Days, weeks and months ticked by and I found myself that dark, soul-ripped place. I cried on and off for days, and came to the conclusion I needed help. In a concrete way, I needed someone to do my dishes and laundry and pick up my supplements and keep the apartment allergen-free. Because I needed any time at all back so I could write again.

My mother and The Poet agreed whole-heartedly, and now I have someone coming three times a week to do all those things. It feels better, much better. At first this just meant I spent more time on medical appointments, but this week I wrote a bit more.

There is this guilty part of me that keeps saying: how can your family be paying for someone to do chores for you just so you can indulge yourself in writing? You're a grown woman, can't you take care of yourself, do you really need your grapes peeled? But The Poet and my mom and other close friends have kept saying no, this is important, you need this. Thank god for their encouragement, I am acually crying from gratitude while I write these last two sentences.

***

The short stories are sticky-- I get a new idea for one, and I want to write a draft while it's glowing in my head. Then I need to edit and edit the last one I wrote. Then there are the submissions, which always take thrice the time I anticipitated. I get so caught up in the yo-yo of short stories that the memoir never happens.

So this week I gave myself a deadline. Finish up the shorts and go back to the memoir. Something book-length is so daunting when I'm feeling this sick. On the other hand, I'd planned to finish it last July and August, and it hurts how long I've delayed. So no more.

Maybe there was something about that resolution. I opened my e-mail Sunday to see a reply on my story Maximum Love. Ho-hum. I couldn't even work up an ounce of nervousness, or hope, or even dread, just boredom at the thought of one more more rejection. I opened the message.

"We want to publish Maximum Love," they wrote. "We love it." At last! A perfect send-off from the universe's chaos. Time to put the stories to rest, get back to the book.

Yesterday I sent out ten new submissions for my most recent story, and those are my last submissions for a long time. This morning I'm updating the blog. Tomorrow, or perhaps this afternoon even, I will open the box that holds draft 2 of the memoir.

BACK ON BIAXIN

Looking back at my last post, I am struck by how peaceful it
was, and by how much has changed in the nine weeks since. It was just about
then that I agreed to do another test for Lyme because I should have been done
with the Shoemaker protocol and off most of my supplements by then, and I
wasn’t. Dr. Ross said active Lyme might possibly be the culprit. This was
exciting in exactly one way—that there now is a non-antibody test for Lyme with
80% accuracy.

Before the blood draw, I had to I stop taking my one-drop/day
dose of Samento, a Lyme-killing herb, and a couple other herbs I’d been taking
that had an anti-bacterial effect.

And so began my further descent. I slept less, tried to
solve it by detoxing more, got nowhere but exhausted. I worried the lurking
sinus infection, which I’d been trying to get rid of for six months, was
causing all my trouble. I redoubled my efforts to clear it out, which took more
time from my day.

More than ever, I felt from the moment I got out of bed that
I was racing the clock to get through all my medical tasks-- injections to
powders to pills to enemas. And now the nasal sprays and essential oils on
q-tips inserted into my sinuses, which I found myself doing at 11pm, because I
couldn’t get to it sooner, which is hardly a way to induce a good night’s
sleep.

I did the blood draw, the lab mixed up my test results, I had
to stay off my herbs for two more weeks until I the replacement test kit
arrived.

And then came the day I lifted my arms to braid my hair, and
I felt an all-too familiar feeling: that horrible, domineering, sluggishness I
lived with for eight years before my diagnosis. My arms were made of liquid
lead and I just couldn’t lift them for more than five seconds.

“This feels like the bad-old days,” I thought.

Mind you, I was still going running and to dance class and
doing my grocery shopping by foot, but the absolute feeling of Lyme took over
my body from time to time. Sometimes it was a just a passing moment, a few
mornings it was a good two hours. There is tiredness, there is sickness—such as
food-poisoning or the flu—and there is Lyme. It has its own particular feel.
You can say “flu-like”, but the feeling, for me, is subtly and entirely
distinct from the flu. It has a particular flavor, its own color, as unique as
the face of an old friend. You may not have seen that face for a few years, but
you would not call it by any other name.

I put myself back on Samento—one drop, then two drops per
day—felt wiped out enough to call it a die-off reaction.

So I was in Dr. Ross’s office last Monday declaring that I
could not wait six more weeks for test results. (Yes, this amazing new Lyme
test takes time!) I also told him just how stubborn this sinus infection was. I
left the appointment with a prescription for Biaxin (generic name Clarythrosmycin
for all you anti-biotics geeks), which would treat the sinus infection and the
Lyme.

Dr. Ross reassured me that people in my situation bounce
back quickly—I haven’t gone back to square one. And this week, despite the
waves of nausea and other die-off unpleasantness, I’ve felt a bit better than
the week before.

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.