I made Vietnamese Pho!
(And those are my favorite socks in the photo, too. Okay, they are kinda my only socks, hence the favored designation.)
A better and more descriptive update on my life is way overdue, but for now—THIS: I have healed enough of the brain impairment from Lyme disease that I can actually follow an honest-to-god real recipe.
This was impossible before. Totally impossible.
Who knew how much I love to cook, right? Could there actually have been a foodie buried under all that pain? I’m nodding my head with a resounding maybe.
Hmmmm—better yet, yes.
Food is life. Flavor is life. The desire to enjoy food is also the desire to live. And I won’t mention how many people with Lyme commit suicide, because let’s not go there, where it’s howling with darkness.
I can no longer eat at a restaurant, prolly not ever. At best—rarely. So what I make at home with organic whole mostly Paleo foods has to be exciting, and healing, and hopeful, too.
Has to be. Because hope is life driven.
And if you are fighting a disease with no known cure, trying to get to the mythical lands of remission, giving up hope will sink you faster than being swallowed by a sentient black abyss with two red glowing evil eyes. Being hopeless is pretty much being dead already.
At my lowest, toward the end of 2014 when I started treatment and learned what the horror of herxing truly means—when I struggled immensely just to count to three—I’m not kidding—struggled just to try to count my Cowden tincture drops into water to take my dose and not become hopelessly confused by the time I reached THREE drops, and then become further confused to which bottle I had JUST been holding; to now, when I can follow a complex recipe with teaspoons and tablespoons and temperature and succeed with my kitchen tools whisking and measuring and mincing up something quite tasty at the end.
Pho. And a movie.
It was The Impossible, by the way. (With Naomi Watts and Ewan McGregor). Good show and I cried because, holly crap—the hope thing.
Gotta have it.
Still alive. Still fighting. Still slowly improving but sometimes really scared the improvement is not real, or not getting all the infections, or will stop working—will leave me here. Just here and it’s not enough.
Meanwhile—Pho. And banana pancakes. And Mongolian Beef, homemade red sauce, Szechuan Beef, Chia Chocolate Pudding, chili and cornbread, gluten-free pizza, Kahlua Pork, Chicken Tikka Masala, and red wine. Yes. I did. Happiness.
It’s my two year Beeversary.
Two years ago I embarked on this journey to treat late stage chronic lyme disease with bee venom therapy’s broad-spectrum anti-microbial properties. Two years ago.
That’s completely bonkers.
I’ve come so far. Healed so much. Done the impossible. Words can not describe this unimaginable journey, what I have been through physically to endure the stings and the herxes, what I have learned spiritually. Bee venom has been a powerful medicine like no other I have ever known. It has stripped me to the bare white of bone, it has lifted me up into the unbound sky. I have held on for dear life through cries of doubt, through wintry storms of fear, through the painfully pink new growth of healing and the deep release of skin after old, leathered skin of me to find the person underneath this nightmare of chronic illness. The real me. The actual me buried alive. The person I’ve been digging up and fighting for freedom with; using the claws of medicine of everything I know and have and can find and still more. The person worth it all, over and over again.
I am so grateful.
Thank you bees. I am here: stronger. Fiercer. In service of light. I am working to save you as you save me.
I have at least another year of treatment for bartonella, (a persistent bacterial co-infection of lyme that is to many people more debilitating than lyme disease itself), maybe two years—all guns blazing, um actually—I mean all stings.
This past weekend I saw a plane disappear right out of the sky. I’m being totally serious—but I’ll get to that later.
I took my son camping with friends. I set up our tent. Cooked him a hamburger over the crackling fire, played barefoot in a cold mountain stream, and watched shooting stars in the big night sky from under the warm covers of our sleeping bags.
It was classic.
But there’s something about the outside world that has been bothering me for a long time.
I remember so many insects from my childhood in Northern California, a million different kinds—crawling over the ground, buzzing around my face, or springing off the high grass to escape my boots. Where are they now?
And what about the green frogs? The silver and blue fish? The sticky spider webs that I’d get caught in and always made me think a huge spider had crawled down my back and was going to fang my spine? Try kicking over a rock. Is anything even living in the dirt anymore? Nature used to be so alive, and now it seems to have so softly, so quietly—become eerily silent.
At least in the area of Oregon that I live.
The small section of ZigZag Creek that I waded in—I mean, this epically beautiful mountain water—seemed almost devoid of life. Just ice cold water falling over rocks.
Clear, empty water. And alarm bells are ringing in my head. They’ve been ringing for awhile.
There used to be more birds. Too many neighborhood trees look sick now. The hot summer air this year sometimes felt almost viscous, poisonous. In fact, everything looks sick. Every damn thing. Including myself: Lyme.
I am sitting at my kitchen table. I just stood up and walked to every window of my house upstairs and downstairs, and I count six trees in obvious distress. One is fully dead.
Remember the book Rachel Carson wrote? Titled Silent Spring? Yeah, that. I think it’s full on happening. And our cell phones are ringing, the TV is blaring, and we’re all just telling ourselves over and over: The bad thing outside is not happening. It’s not happening. It’s just not happening.
Clinically, they call it denial folks.
Oh yeah, so getting back to the plane that disappeared right out of the sky.
I was standing in the center of our tent camp, looking up through a wide circle of trees into the deep blue sky—I had even said aloud to others, hey, look at that plane. (It seemed so much bigger than usual because we were 2,200 feet up in elevation.) I was looking right at the plane when it vanished before my eyes.
Full visual contact: I saw big metal wings, fuselage, tail. The normal shape of what I’d describe as a 747-ish plane shape. I saw a thick line of chemtrails coming out from behind the plane in a white plume. Then, the white plume cut out for a moment. Then came back on with a spurt of white. And then the plane vanished.
The white trail stopped abruptly.
And what the hell?
Not obscured by trees. Not flared out by the sun. The large plane disappeared in the middle of clear, blue sky. I didn’t even blink: it was just GONE.
And then cut-off white plume just slowly floated away in the wind, toward the east, like nothing weird had just happened.
Not only am I tired of being poisoned from land, water, and sky, I’m also tired of being lied to by our government, mega-nasty corporations, and the private interests of unconscionable people.
Strange things are going on. And nature is trying to tell us it’s being poisoned to death. I know I’m listening. Trying not to die of Lyme myself—and still listening to everything around me with my heart and soul.
So if you ever see a plane vanish right out of the sky as you’re looking at it: you can tell me, I’ll believe you.
Apitherapy: The use of products derived from honeybees as medicine; including bee venom, honey, propolis, pollen, and royal jelly.
Bee Venom Therapy: The use of honeybee venom is an ancient therapy, going back into the mists of time to Egypt and Greece, and still practiced today in modern China and in other cultures around the world. Many individuals in the U.S., whom have embarked on a bee venom treatment protocol after exhausting many or all other modalities of modern medicine to treat chronic disease, have done so because there is nothing left to do but deteriorate and die, or sting. Currently, modern science is revisiting this ancient knowledge and scientific studies are forthcoming. There is still much that is unknown.
If I had a time machine, I would not go back to last year, July 30, 2015—okay, I’ll go back. But I’m just quickly dropping off this note to myself and zooming forward to right now again. Because right now is just starting to be good, and I don’t want to miss out on anything moving forward in my life. Just in case good turns even better, and then better becomes awesome.
It’s my life, after all. And I’ve fought hard for the rest of it.
Dear Myself From Last Year (and Other Readers, too):
The beginning of bee venom therapy was super hard for me. I sometimes screamed involuntarily when I stung myself on the spine. (If you are trying to imagine how a person can sting themselves along their own back, imagine reverse tweezers and two mirrors. I guess it’s kinda like a yogic thing.)
There were times after a sting that I dropped to my knees crying, sweat rolling out of my armpits, clear fluid out of my nose, saliva creating a pool on the bathroom floor. Barred teeth. Hair clutched in fisted hands.
Some stings were so painful they had a momentary paralytic effect, too—like I’d just been shot with a ray gun from outer space and been immobilized. Like total systemic shock.
And when my breath came back I would tap my fingers together rhythmically on the wall or floor, or hum and bob my head unintelligibly, like the instant onset of adult autism. Yah, yah, yah—mum, ma-mum, mum. But let’s call it a somatic coping mechanism. You know, like an intelligent way to distract the nervous system. Just get through this. Each. Second.
I really didn’t have a choice. The brain goes into autopilot. (more…)
It’s not my disease. It’s my LIFE.
And I want it back—I want my life back from being taken hostage by stealth pathogens that might, or might not, have been engineered as bioweapons.
The book to read is written by Michael Christopher Carroll, titled Lab 257: The Disturbing Story of the Government’s Secret Germ Laboratory.
The blurb on the back cover: “Based on declassified government documents, in-depth interviews, and access to Plum Island itself, this is an eye-opening, suspenseful account of a federal government germ laboratory gone terribly wrong. For the first time, Lab 257 takes you deep inside this secret world and presents startling revelations on virus outbreaks, biological meltdowns, infected workers, the periodic flushing of contaminated raw sewage into area waters, and the insidious connections between Plum Island, Lyme disease, and the deadly West Nile virus.”
And need we mention—if you ever have the misfortune of finding yourself teleported onto the sandy shores of Plum Island, New York (don’t get bit by a tick)—it is a mere 10 mile drift across the cold, choppy waters of the Atlantic Ocean to the town of Old Lyme, Connecticut.
Indeed, the very epicenter of the outbreak of an unknown disease in 1975 that would come to be called Lyme.
It’s not my disease. It’s my LIFE. And I want it back.
Through a whirlwind of events, in a handful of intense weeks, I have become a beekeeper. I did not consider being able to learn beekeeping until just suddenly about three weeks ago, I saw a photo of a top bar hive and I thought, that’s my hive. It was literally like the photo on the internet awoke something in me.
Like a knowing. Kinda like the same way I started BVT over ten months ago, shotgun style. Just go now, figure out the details later.
And then there was the bee that flew into my kitchen four separate times in one afternoon. It flew in through the open sliding glass door, came near me in the air, flying gently near me. It didn’t go toward anything else in the house, it didn’t go toward the windows, or the ceiling lights—it flew to me. And I raised both my hands and said you have to go back outside, and the bee flew just a few feet in front of me as I walked it back outside through the kitchen and the family room. Then I shut the door.
I felt a little guilty, like maybe I’d had a visitor and I’d been rude.
And three other times that warm day, when the door was open again, the same exact scene played out. And by the fourth and last time, I was like, this is not normal. This is a message.
I wish I could write more elegantly about it all, but the words are not flowing. I had to push my body very hard, almost beyond what I can do without making myself sicker, but I followed each day step by step. What do I do next? This thing. What do I do after that? This other thing.
When I went to my first bee class, the metal chair dug uncomfortably into the ten stings on my back (sting day), and I didn’t dare tell anyone about BVT. I don’t know why, I just felt shy about it.
I learned a little about hives and realized the season for starting a new hive was ending. The teacher said, there is still time. On the way home I was at a stoplight when I realized there was a bee crawling across the driver’s side of my windshield. I opened my window and reached an arm out, and the bee crawled on my finger.
I just sat there, this bee on my finger at a red light, with four lanes of traffic and concrete and steel everywhere. I thought, this is probably not normal. Then the light turned green and the bee flew out the window and I drove home. If I’m supposed to have a hive, somehow this all comes together. I don’t know why, or how, but somehow it comes together—and if it doesn’t, that’s okay, too.
And it did.
I love my new bee friends and I’m so grateful to be a beginning beekeeper. But now I feel quite sick and I must rest. Love and hugs to everyone doing BVT, or on a healing path—hang in there. This is hard, but it is worth it sometimes to do the harder thing.
Please enjoy the beginning of my short story, The Sting Girl, and if you’d like to read more, this story is available for $2.99 as an ebook on Amazon, iBooks, and elsewhere.
Early Spring, 2034
On Tuesday the national news announced it was a World War again, by Thursday all the Chronics had been rounded up from their San Francisco homes and apartments, and sometime in the middle of a pitch black Saturday night Trinity Jane Nickelfire finally stumbled from a monster-green Army transport truck and was herded by drones into a medical camp by bright, blinding lights.
Now, she now lay like a broken China doll on a damp patch of dirt, shivering under a piss-brown tarp, trying to keep her twitching muscles from jumping out of her skin.
The tarp crinkled like birthday wrapping paper.
It was annoying.
When she’d finally fallen asleep, she’d even had a stupid birthday dream where her mom and dad were singing in a sunny yellow kitchen and everybody was all excited, the lemon poppy-seed cake had seventeen candles, and then bam! the cake blew up and her parents ran around screaming with blood spurting from their flesh-peeled faces.
Bacterial nightmares were a drag.
When you woke up you really quick had to count ten good things that you knew were true. When you were done counting, the lies in the nightmare would already be fading away.
Because for one, she’d never had real parents, so they weren’t going to lose their faces.
And secondly, she couldn’t eat sugar anymore. So any kind of cake was like broccoli and she didn’t miss it.
Not when sugar made her symptoms worse.
Trinity realized suddenly her neuro twitch had stopped. She held her breath under the tarp. Even the low-grade buzzing vibrations under her skin were gone.
It was always a freaking miracle when her infected body went still.
She almost smiled. But it was too much work.
A coughing fit punctured the night. That same phlegmy lung-hacker from inside the Army-green blowup tent had started up with his whoop again. Damn mucous-filled stranger, laying there inside that sea of metallic folding cots with the other parchment-paper faced people gripping their woolen blankets under the glow of blue service lights (that made everyone look like they were wearing black mascara)—hack, hack, hack.
The terrified whispers. The uncontrolled moans. The psst escape of stinky cabbage farts—then hack, hack, hack.
But really it was the cabbage farts that had been too much. Who could breathe?
Within the first hour, Trinity had dropped out of her cot and crawled secretly along the modular plastic floor of the Army tent on her hands and knees.
Just to find fresh air somewhere.
The hexagonal floor pieces had been snapped together like a jigsaw puzzle and the little drainage holes had pinched circular imprints into her palms. Trinity had slunk past one row of pot-bellied cots and then another. The tall folks with their feet dangling. Cold blue toes.
Her bony knees spiked with pain through moss-green drawstring pants—the identical bottoms they’d all been issued with white T-shirt tops.
Trinity had thought the spherical nurse drones would track her movement at the canvass exit flaps, but for some reason their ocular sensors didn’t sense her.
The nurse drones had panels that could open, and all kinds of medical gadgets could extend on mechanical probes. Each drone had a different numeric identifier and a barcode. They floated down the rows, smooth white basketballs with a big red plus sign, monitoring their human horde.
While one had crawled secretly away.
Technology was stupid.
Set the scene: It’s lunchtime on a zippy little summer’s day. I’m driving home from swinging kettle bells in the appropriate black spandex attire, kinda zoned out from trying to get my lymph system moving. And even more zoned out from Lyme disease in general and the constant daily visitations from my dear friends, the symptoms.
(Note: The words the symptoms is particularly funny to say out loud when you sing it like the musical ditty to The Simpsons cartoon.)
So this is what suddenly happens: It’s a two lane road, shopping center draped in an invisible cloud of french-fry smell on one side, and a chain-linked, peeling-paint middle school on the other side. Traffic slows down both ways because, well—because it’s lunch and people do this thing called eat.
The Mercury Sable ahead of me is seriously grumpy.
I notice this because the Mercury enters the middle turn lane, gets blocked from turning by the river of cars, and then angrily swings right again and crashes into the car in front of it.
Full on fender-bender in real time. And I’m a real Honest-To-God witness.
I wasn’t even distracted or blinking.