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I was diagnosed with late-stage Lyme in July of 2005. At that time I could barely walk without losing my balance, I stuttered badly and couldn't remember simple words. A large percentage of my body was covered with painful lesions. A staph infection had sent me to the emergency room the month before. I'd been diagnosed with eczema, and couldn't understand why I was getting increasingly sicker. It was the most frustrating experience of my life. When Lyme was finally diagnosed and I began treatment, a whole new host of symptoms kicked in and my world shrank even smaller.
Throughout those agonizing days this diary became my lifeline, my connection to the larger world. It started as a blog where my family and friends could check in on me. I wasn't fit to talk on the phone but I could still manage to write. I was trying to make sense of the symptoms and events. Written down, my fears seemed a little less potent. It seemed important to record my anguish and my progress, but more importantly, my joy and profound determination to heal completely.
During my initial phase of research about Lyme, I discovered a universe of disagreement in the medical communities about how to diagnose and treat it. I needed clarity, but I was detecting denial, confusion and cover-ups instead. Misdiagnoses are common. The people suffering are at risk of getting lost in the muddle. Throughout the past year, I've learned that regardless of the path we choose for treatment—western medicine or integrative—it's up to us to educate ourselves and commit to our own healing. Even when we can't think straight.
The most surprising thing has been discovering what a dynamic force healing is. It's teaching me how crucial it is to draw my boundaries, not allowing toxic people or substances in my environment.
We can heal from Lyme. Nine months ago, the county doctors were ready to write me off with Multiple Sclerosis, fibromyalgia and a severe case of eczema. Even with positive test results for Lyme, they were prepared to ignore the diagnosis and channel me through a dismal battery of tests for vaguely defined immune deficiency conditions. They informed me that I satisfied the requirements for disability benefits. I saw no benefits whatsoever in disability, and determined to get well instead.
Now, my naturopathic doctor agrees that I'm a miracle. I'm about 90% better after only nine months. I'm self-employed and I have fun written on my calendar for years to come. I feel like my life is just beginning.
Wherever you are, I wish you wellness.
-- Rob Brezsny, Pronoia
This rash makes no sense. Yesterday it was biting cold, but I can't pull my gloves on over my hands. Called around to see if I could get in to see a dermatologist but none of them are accepting new patients.
“Unless,” says one of the receptionists, “you have, like, terminal cancer.”
I've made an appointment at the women's clinic. If they can't help me, I'm lost. I could use some luck. I could use some health insurance. I've got a boatload of determination, just wish I had a compass.
Why is it that the healthier I eat, the worse the rash gets?
Other than the rash, I feel fine. My mother has suggested that I'm stressed out, so I'm meditating. It's true that I've been through a lot of recent, big life changes, but welcome to the 21st century. We've all been going through big changes. I'm a resilient, creative person. I know how to express myself, and I'm not famous for repressing my emotions. Just ask my mother.
The nurse practitioner at the women's clinic welcomes me into her office. She asks me why I'm there, and I hold up my hands for her to see. She looks closely at the rash spreading across my fingers and the backs of my hands and examines the blossoming red splotches on my lower arms. She asks thoughtful questions about how the rash forms and spreads. She listens. She quizzes me on my diet and my daily routines.
After awhile she sits back and folds her arms across her chest. “You have eczema,” she announces. “Get some cortisone cream from the drug store and pile it on.”
Eczema? All my research on skin problems has suggested that eczema happens to people with poor diets, or people who are dependent on antibiotics. I don't fit the profile. I tell her that for these reasons, I'm skeptical of her diagnosis.
“You have eczema,” she repeats. “Lots of people develop eczema, usually from stress.”
When I stand up to leave, she peers over the tops of her glasses at me. “Better do something about reducing that stress,” she says.
So, eczema. She's convinced me. I desperately want to be convinced. I want to put a name on this scourge and start doing something to stop it. She'd given me a list of foods to avoid, and foods to eat more of. She told me that garlic aggravates eczema. So I gave it up. Along with citrus. No morning orange juice. I had already cut out coffee and wine a year prior, so no big sacrifices there. I cut out the sugar in my morning tea. No sugar, no onions, no fermented foods like soy sauce, and no garlic. Out of all of the above, I miss garlic the most.
wheat, wool and the divine wow
I've never had a food allergy, but people say you can suddenly develop one. I cut out the common allergens: Wheat, gluten, eggs and dairy. I pile on the cortisone cream. It doesn't help. My hands and arms itch. I try not to scratch. I freeze water inside empty vitamin containers and hold the ice-cold surfaces to my itching skin instead.
I give up knitting. It could be the yarn. I don't think I'm any more stressed out than the next person, except now I miss the knitting, which really helped me unwind my mind at night.
After five months of being on cleansing diets for my intestines, which is where skin problems begin, I'm still breaking out with this mysterious rash. Cleanse your colon, heal your eczema. Sounds simple.
But it's not working. I tried Chinese herbs specifically blended to cure eczema, and I've fasted on vegetable juices. For the first three months I thought the herbs were working, but now I can see they haven't made much difference. The rash is worse. What is happening to me?
Evan and I go to lunch at the Black Bean a couple of times a week. Louie, who prepares my salad, must think I'm loopy. I order the only thing on the menu that can be modified to fit my strict dietary needs. It's the Chicken Feta Salad, except hold the chicken, hold the feta, substitute avocado slices, no tomatoes and no vinegar. Swimming in olive oil, the lettuce keeps slipping off my fork.
My mom remarks that I'm looking thin. I joke that it must be the workout I get trying to eat my salad. There's not a lot of fat in dandelion greens and carrot juice. But even after months of eating like this, cleansing my liver and intestines and eating only vital, healthy foods, this rash has never gone away.
I start demanding answers out loud. “If there is a Divine Wow, and you're listening, please tell me what the heck is going on here.”
death at 2:30 am
I wake up in the dark with the urge to pee, roll out of bed and put my feet on the floor. Out of nowhere, pain slices violently into my right ankle. I reach out to support myself against the wall and manage to lurch across the room without putting any weight on my foot.
Sitting on the loo, my ankle throbbing, nausea overwhelms me. I think: must be from the pain. I remember hearing that intense pain can make you vomit. That must be what's going on. The nausea increases.
My whole body breaks out in an ice-water sweat, and what's worse, I cannot breathe. I slip off the toilet and collapse like a towel in a heap on the bathroom floor, horrified that I have to let go from both ends at once. As this happens, I feel my body's core shutting down.
My boyfriend's voice echoes through the tin chamber of my head. "What is happening to you?"
I am not able to answer. His face swims in front of mine. He looks utterly terrified. The thought occurs to me that I might be dying right now, and I don't know why. There is no bliss, no white light. No angels welcoming. Just the bathroom floor. I am utterly bewildered.
The crisis passes, my body temperature normalizes. I'm able to breathe. Evan helps me up off the floor, although I can't put one ounce of weight on my ankle without the pain slamming into it again. He asks again what's happening to me, what's wrong with my foot. I want to explain it how it feels but inside my head is blank. I ask how long I've been on the floor.
“Five minutes,” he says.
I could have sworn it'd been two hours. All I had wanted to do was get up and pee.
I glimpse myself in the bathroom mirror, do a double-take. Alarmed to see myself this way, I draw my fingers across my face, which is devoid of color. Lips chalky white. I look like I've been poisoned.
home with a borrowed cane
The following three days I stay home from my housecleaning jobs, sitting in front of my computer with my foot propped up on a chair. Walking has become excruciating so I borrowed a cane. I can't put one ounce of weight on my right foot. Clothing is becoming a major challenge, finding long skirts or dresses that won't cling or bind to me in the sensitive spots.
After the bathroom experience, I had been afraid to fall back asleep, wondering if I might die during the night. But exhaustion trumped fear and I woke up the next morning still alive, mulling over the strange experience.
I pick up the phone and make an appointment with the nurse practitioner at the women's clinic who had diagnosed me with eczema. Confused, I call back ten minutes later and cancel. I'm afraid she'll just tell me to put more cortisone cream on it.
Who do I call? I'm so used to being healthy, fixing any illness with a healing diet, hot baths and rest. I've been fighting this rash for months and I haven't been able to walk for eleven days. We're relatively new in town and Evan and I work for ourselves so we don't have a lot of contacts here. With no doctor and no health insurance, I'm at a loss to find help. My brother has a doctor, but he also has health insurance. I wonder if his doctor would see me.
The rash spread to my hips, my lower back, and it is getting worse. The rash covers my shins on both legs, and it's starting to wrap around the back over the calves. The skin is almost completely open. Nasty looking. Hamburger. We take pictures of my legs with my mom's digital camera. They're horrible. I find myself suddenly afraid that it will spread to my face.
What if I had died during the night? What is happening to me? Who do I ask for help?
saved by bro-in-law
In retrospect, I'm sure it looks stupid not to have gotten in to see a doctor, any doctor. I really don't know what I was thinking, other than, I don't have a doctor and I'm not insured, so I've got to cure myself.
The nurse practitioner had told me that I had a bad case of eczema, and I kept thinking that the ankle pain was just a temporary setback. It would go away if I just rested, ate healthy foods and took mega-vitamins.
Wondering it's a severe reaction to mold in our house, I decide to leave town and go stay with my mom for a few days. If the rash subsides, I'll know it's a reaction to something in my immediate environment. Since I am unable to walk or drive, she comes to pick me up.
I'm trying not to show my mom how scared I am, or how much pain I'm in. Like me, she's not thrilled about going to doctors either. She's convinced that herbs, vitamins and other beneficial superfoods are just as good, or better, than pharmaceutical medications. My sisters and I have inherited a lot of our interest in integrative healing from her. We're generally a vital bunch, but I'm seriously starting to doubt my ability to heal this myself.
My foot is propped up on the dash in front of me, because the moment I let it down the lower part of my leg floods with searing pain.
“You want to see the new homes they're building over here?” she asks in a cheery voice.
She's just trying to distract me, but I can't believe she wants to stop anywhere. It's absolutely the last thing I want to do. All I want is get to her house and rest. I'm also thinking that when I get there, I'll call my brother and sister-in-law who live nearby, on the off-chance that I might be able to get in to see their doctor.
“It'll only take a minute to drive by,” she says, turning onto a rural road.
I want to scream, but my energy is drained so I give in.
A moment later, though, I recognize this neighborhood. In a flash, I remember that my ex brother-in-law lives in a house on this very road. Always having had a good relationship with my ex's family, I tell my mom that since we're here anyway, I'd really like to stop at Lon's and see if he's there. It's been six or seven years since I visited him here. He gives great, gentle bear hugs, and I could really use one.
My mom pulls the car over as we reach Lon's property, a few large, spreading oaks and a modest house. I hobble over to the low picket fence. The gate latch is closed. A dog lying near the front porch raised his head to watch me. I turn to limp back to the car when I hear a familiar voice.
Lon had glanced out his window and recognized me standing by his gate. “That you?” He walked across the front yard, and I gratefully received one of his famous bear hugs. Then he stood me back at arm's length to get a look. “What's wrong with you?”
My ankle was pounding. “I'm messed up. I don't know. I've got a bad rash.”
“Let me see,” he said.
I pulled my long skirt up from around my ankles to the knee, so he could see my shins. They were raw, red, exposed.
“Oh,” he said, “you've got staph.”
Leaning heavily on my cane and with Evan's help, I manage to limp through the clinic doors. It is 4 o'clock on Friday. No one else is in the waiting room. The nurse practitioner appears distressed as she sees us approach. Walking sideways like a crab and keeping one eye on me, she guides us into an exam room. One peek at my lower legs and she won't even touch me.
I wonder if she's being a bit overly-dramatic as she lifts one arm and points across the street, in the direction of the hospital. "You should be in the ER. Now!"
The emergency room. Lon was right. Years earlier he'd seen a staph infection on a friend and never forgotten the way it looked.
Is it possible for me to have had this infection since last November? Might I have had an underlying bacteria, not quite bad enough to make me ill, but bad enough to give me this terrible rash?
It's possible that I never had eczema, which might explain why my cleansing diet and none of the herbs I was taking to cure it, were working.
The ER doctors sprung into action. They immediately put me on an IV of antibiotics and gave me a second type of antibiotic to take orally. I had a frightening reaction to the oral antibiotic. I couldn't get a deep breath. My head rushed fiercely. I requested something less potent, afraid I was having a toxic reaction, and that it might kill me. The doctor reluctantly switched me to a prescription of a different kind of antibiotic instead.
During the weekend the ER doctors directed me to return two more times for more intravenous antibiotic. They advised me repeatedly to get myself over to an MD as soon as possible, and see a dermatologist to determine what is causing this rash.
One of the doctors advised me seriously not to "muddy the waters with health food."
I find that to be a rather confusing request. Exactly which foods constitute “health food”? Why would I eat any other kind? For seven months now, I haven't eaten white sugar or fast food, I haven't had any alcohol or coffee for over a year, and I drink green tea daily. I eat oatmeal for breakfast, dandelion greens for lunch, whole fruits and vegetables, brown rice and a few times a week, salmon. I drink rice milk and snack on dulse seaweed. I consume shots of wheatgrass and organic carrot juice on a regular basis.
Potato chips are my worst habit. I'm boring as heck, nutritionally speaking. I admit it. I eat health food.
It may be too late for me. My waters are already muddied.
--from my notes, after listening to the ER doctor
A faint beep pulses from a machine above and behind my bed, as the antibiotic flows into my blood stream intravenously. To my left I can hear another woman groan and whimper in pain. The emergency room personnel are efficient.
"Who is your physician?" asks one of the ER doctors.
He looks freshly scrubbed. His eyes are bright blue. He stands near the head of my bed but his voice sounds distracted. He fiddles with something behind me, just beyond my range of sight.
This is the fourth or fifth time I've been asked in the past couple of hours, since being admitted. They don't seem to hear when I tell them I don't have a regular doctor.
"The good news is we can stop the staph infection,” he tells me. “Your white blood cell count is fairly low, not too elevated. That means the infection hasn't gotten into your blood yet. We were afraid of that," he adds, glancing at my mom and Evan where they sit in metal folding chairs.
"Who did you say was your physician?"
“I am.” I'm not trying to be a smart ass. I'm too weak.
"You have a grave condition underway," the doctor retorts. "And when you start a war, you cannot go in halfway. You have to use nuclear bombs," he adds sternly.
“Something is underlying the staph infection. Staph is serious, but it's a secondary infection. There's something else going on, but we don't know what. We can't diagnose it here. You must get a punch biopsy by a dermatologist, no later than Monday."
At the sound of its name, I know I don't want it. I picture a metal hole punch sinking into my damaged flesh. So much of my skin is dissolved by the staph already. A punch biopsy sounds like a bad idea. However, I want the doctor to think I'm being mature about it, so I pose a question.
"Will the biopsy allow them to definitively determine what the problem is?"
"Oh, yes," he smiles, flopping his head toward his left shoulder. "But what you need first is a general practitioner. A dermatologist won't see you unless you have a GP. They need to be able to talk to each other and create a feedback loop."
He touches his fingertips together, forming a little ship. "You need a GP to be the captain of the ship. Then the captain of the ship can talk to all the others and decide on the best course."
The doctors told me I was very lucky, that I would have certainly been dead within two days if I hadn't gotten to ER that night. The infection was about to go septic.
Go figure, I was planning to spend the weekend resting at my mom's. Nobody would've been as surprised as me if I'd died.
Later, I'm recounting all of the ER doctor's war metaphors for Evan. "But, you have a skin rash," he says. "Aren't nuclear bombs bad for your skin?"
“you're too late!”
I'll never forget her, the GP at the community health center. Breezing into the exam room, she asks why I am here. I explain that the ER doctors sent me, that I've just spent the weekend there with a staph infection, and that I'm on a 10 day course of antibiotics.
She nods imperceptibly, briefly touches my chest and back with her stethoscope, directing me to breathe in and out.
She sees the white bandages covering my lower legs. I tell her I'm not taking them off. I offer my arms for her to look at.
“Eczema. Extremely severe,” she barks. “Why didn't you come in six months ago? What have you been doing about this?”
I tell her that I went to the women's clinic six months ago, and the nurse had recommended foods to avoid and foods to eat. I told her I had changed my diet entirely in an effort to heal it.
“Your diet has nothing to do with it,” she said angrily. Then she added, “You're too late!”
Have I really just heard what I think I heard?
“You're too late,” she repeats, emphatically. “You must see a dermatologist.”
Stammering, I explain that I intend to, but I have to have a GP before a dermatologist will see me. That's what I'm doing here, I say.
“But you are in a very bad position here,” she continues. “Without health insurance, no dermatologist in this county will take you.”
She dashes off a script, rips it off the pad and hands it to me, along with her card. “Corticosteroids. It will keep your rash from spreading. Start today. Without a dermatologist, I am your last hope. Come back to see me in two days.”
I was raised to treat doctors with respect, so I thanked her.
Today I had a meltdown, a genuine psychotic freakout.
I'm in the kitchen. My phone rings. I answer. Wrong number. It rings again, I answer. Wrong number.
My phone rings five or six times in a row. Each time, I tell the same woman, “sorry, wrong number.”
By the third time I'm starting to get mad. “Stop calling me!” I yell into the phone and slam it into it's cradle. I mean: wrong number. Which part do you not understand?
This was ridiculous. Any normal person would not have kept calling the same number thinking that she was going to get it right eventually.
But my anger shot off the scale, way out of proportion to the situation. Evan heard me yelling, got out of the shower and appeared in the kitchen, where I was pretending to wash dishes.
“What's going on out here?”
I told him I was having a nightmare. Right there in the daylight. I had come unzipped. It was the prednisone. Tremors started in my neck and my head wobbled like Katherine Hepburn's. I couldn't even talk, the phone calls had stressed me out so much. Everything I said, I stammered. I couldn't believe it was me talking. I've never stuttered in my life.
Evan got dressed and told me he'd be back later. Before he left, he suggested that I call my mom.
My mom showed up, sat in the chair across from mine and just stayed there with me. She was calm. Her energy helped me settle down. She wasn't there to make suggestions about how to help. She wasn't there to tell me that I should or shouldn't be taking the steroids. She did exactly what I needed someone to do. Just sit with me.
I wanted to cry but I held back. I tried deep breathing. I did not move out of the chair. I couldn't. I was afraid that if my body started moving my mind would boil up and over again. We chatted quietly, without moving, for several hours. We talked about little things, the handmade tile tabletop. The color of the curtains. The reflection of light on the wall.
caution: dermatologists at work
The health center GP had been right about one thing. I wasn't able to get in to see a dermatologist. However, thanks to strings pulled by my sister-in-law, I was able to make an appointment with a dermatologist's assistant for the following day, as long as I could pay cash upfront. The dermatologist would oversee any diagnosis and treatment protocol that his assistant made or recommended.
The dermatologist's assistant briefly scanned the rash on my hands and arms. He affirmed the diagnosis of eczema made by the doctor at the community health center and the nurse practitioner at the women's health clinic six months prior. He asked no questions.
While I waited on the table in his sterile office, considering the illustration of acne on the wall poster, he disappeared from the room. Ten minutes later he reappeared with the dermatologist.
The two men approached, barely acknowledging my face. They talked about me as if I were a bag of damaged skin, saying “the skin is this, the skin is that.” The dermatologist peered at the nasty rash on my forearms and the backs of my hands.
“The ER doctors advised a punch biopsy,” said the dermatologist's assistant to the dermatologist. “I'm ready to do it.”
“Umph,” the doctor grunted. He was staring into my wounds at close range, nodding his head vigorously. He gestured to the white bandages wrapped around my calves.
“I'm not taking those off here,” I said. I was stuttering and tremoring. “They're worse than my arms. I don't like the steroids,” I added, even though he hadn't asked. “I don't think they're working. I don't think I have eczema.”
The way they glanced at me, dismissively, you'd have thought I had just said, “I'm against nose-picking. You can't make me.”
“You have to keep taking the steroids,” said the dermatologist as he rinsed his hands at the sink. “Do you want to make your rash much worse?”
I tried to reason with him. I told him that honestly, I thought the steroids were making me feel crazy. They gave me the tremors and made me stammer.
“Yes. Many of my patients tell me that steroids make them feel certifiably psychotic,” he said. The dermatologist wasn't addressing me. He was speaking directly to my mother, who had come into the room with me and was sitting quietly by the door.
He turned to the assistant. “Wait a day or two on that biopsy,” he said. “Skin's infected.” He closed the door behind him.
The dermatologist's assistant was scribbling on a notepad. He ripped the page off and handed it to me. “I'm extending your steroids prescription.”
Neither the dermatologist's assistant nor the dermatologist himself had asked me any questions. I tried to tell them about my near-death experience the week prior to being admitted to ER. Neither of them listened.
Their lack of curiosity astounded me.
I hate the antibiotics and I hate the steroids. I feel drugged-out, slow and I can't sleep because my heart is rushing. I can't talk or think right. I'm disoriented. I am so not into drugs.
My rash is flaring. After a whole week on steroids and antibiotics, this is heartbreaking.
I am hoping I'll discover that the staph infection was responsible for the rash in the first place, that it never was eczema. The diagnosis of eczema never made sense to me. Hoping that when the staph infection is completely gone the rash will disappear as well.
Meantime, due to heavy rain, we've discovered mold underneath our house. Maybe it's the cats or fleas or sulfur or pesticides in the air. I'm cutting the prednisone in half. I may not take any tomorrow. I'll see what transpires. I am not fond of psychosis.
Praying for genuine healers to assist me in this mystery.
Paige calls me from Colorado. It's so good to hear her voice I almost cry. She asks how I'm doing. I can't get the words out straight. I try to describe my life at this weird moment.
“B-b-b-b-b-b-b-b,” I start. “B-b-b-b-b-b.” Complete frustration. All I can do is laugh manically, and she joins in. We laugh long and hard, till tears are streaming down my cheeks, and it feels just as good as crying.
Stuttering badly, I say, “I d-d-don't know if you can tell, b-but I stammer.”
We bust our guts again, laughing so hysterically that Evan flashes me a worried look from where he sits reading in his chair. Finally, we sigh and quiet down.
“I can't remember what I was going to tell you,” I say, wiping the hilarity tears away.
Paige giggles. “Well, whatever it was, it started with a 'B'.”
fumbling towards an answer
I stay so far away from the conventional American medical world that being forced to enter into it has been a shock, a curt reminder of why I stay away. For one thing, I can't believe how suspicious the doctors are of what they call “health food.”
The ER doctors, their eyes lit up like Christmas trees, had mentioned the possibility that I might have a “serious auto-immune deficiency disease.” As a generally vitally healthy person, I was astonished to hear them suggest it.
I still suspect that my body is simply fighting a strong poison here. I just need some help. Maybe it's a bacteria, who knows? I know I can overcome it. It's going to take hard work, but I can beat it.
Instead of going home to my own house, I'm staying at my mom's. After the weekend in ER, Evan thought it might be better if I didn't have to worry about the cats jumping on me, and everybody thought I would rest better at my mom's, and she could keep an eye on me. I'm a little homesick when I think about it, but I'm so out of it most of the time that it doesn't matter.
Evan needed my mom to help me as much as I did. He was overwhelmed. It's horrible to be so sick, but obviously it's hard when your partner is the one who gets sick. If we knew what was going on, if only we had a clue what to do, it might be a little bit more bearable.
To tell the truth, I can't take care of myself at this point. I can't prepare a meal or change my bed or even remember when to eat or drink. I need a full time nurse, and Evan is not going to do it. He's sick of me being sick.
I am too.
It's been almost two weeks. I have no clue when I'll be going back to my house. I feel safe here. I don't feel the need to decide anything big as long as I'm here. It's an illusion, but it allows me to believe that all I have to do is get well.
Can't sleep more than a few hours at a time. The steroids buzzing in my body and head. My heart beats fast and irregularly, rushing, pulling my breath out of my mouth. I'm exhausted, heavy, like there's a brick wall lying on top of me. I can't fall asleep because when I do, I often forget to breathe. I'm drinking so much water that the minute I do fall asleep, I wake up anyway because I've got to go to the loo.
I can't walk and I can't talk. I can't even think. Something is affecting my sense of balance. Stammering, tremoring and wobbling, I get through the days, most of the time lying in bed half asleep.
My journal is lying on the bed next to me. When I wake up I write in it. If I write down whatever is in my head, it clears space in there. Every night I write for hours until I can sleep again. Journaling is helping me digest this surreal journey.
I have hallucinations. They aren't visual. They're sensations, feelings in my body or voices no one else hears.
Here's the most common one: I wake up with a high fever. I call out for water, reach for the digital thermometer that my mom put next to the water jug on my nightstand, but every time I take my temperature, it's normal. The first time it happened I believed the thermometer was broken, so she brought me a different one. Same result: 98.6.
One day as I stand at the bathroom sink brushing my teeth, I hear my dad call my name.
“Suzanne,” he says sharply. It's startling. I haven't heard from him for so many years.
I snap my head in the direction of his voice. He must be standing in the bathtub, which doesn't make any sense. It also doesn't make any sense that he'd be calling my name, since he died when I was fifteen years old.
Searching my mind for answers about the original cause of the rash---which are suspiciously centering on cat scratches I got last fall, around the time the rash began. I start to suspect the cats. Cat scratch fever? Evan and I talk on the phone every day. He researches symptoms of cat scratch fever. All I can think of is the Ted Nugent song.
The only places on my body that are really still rashy are those original cat scratch wounds. They're sticking out red and raised, looking like poisonous spots. Until a couple weeks ago they were virtually invisible. Maybe whatever poison I've got entered my system through them, and is leaving through them last.
I may have to give up the cats. My major attachment. I keep trying to visualize all of us, Evan, me, our three cats, happy, healthy and getting everything we need and want. I'll figure out how to make that come true, somehow.
I spend the afternoon focusing on imagining my cats being cared for by a kind and generous, loving person.
It overwhelms me with sadness to consider giving them up.
going for the garlic
I'm officially off the antibiotics. Tomorrow I start taking garlic capsules, which are natural antibiotics. I'm already taking vitamin C and GSE. I'm impressed at how quickly some of my skin is repairing itself and healing so beautifully. Parts of me are all new, almost, like I've had a major peel.
In my head, I repeat mantras that I make up, like “I choose health.” I believe the mantras and all the dandelion greens, spirulina and fresh green juices are really helping. The doctors would be aghast at my liberal use of health food.
When you're sick, your universe shrinks down to the size of the moment you're in. Nothing else exists. It's tough on my relationship with Evan. I'm too sick right now to think about it. Deep down, I have a feeling we'll be okay in the long run. I'm a little sad, but not overly-anxious about it for some reason. We're being tested. We'll either be a stronger together or this'll finish us off.
I know I have no real choice but to go with the flow at the moment. Being so naturally curious about human nature, I actually think that even experiencing these horrible symptoms has been, in a very weird way, a good sort of an experience. Now that I'm in this, I want to understand what pain is. I want to give compassion to others. I've been so fortunate in my life. I've never been sick, really sick, before this.
I am anxious about not being able to work. I try not to think about money, but I'm worried about it all the time. It's a tricky thing, like walking a tightrope where you can't look down or you might lose your balance and fall off.
searching for the narrative line
Looking back over the past six years, at all the heavy duty changes I've gone through, I realize that I have indeed been sick quite a lot. Stress. What a health-buster.
Let me list the changes. Long-term marriage ended; moved (not once, but several times, in and out of three different states, over a period of four years); fell in love again; lost my job; got a new job; borrowed money; over-borrowed money; got a construction loan; physically built a house with my new partner (not a standard house either, but an off-grid house in the middle of the desert); got a mortgage; went bankrupt; foreclosed on the house; moved again and started a small business.
Now that I think about it, I see that only an ill person would do all that.
When our house-building project dissolved, my antidote was lots of wine for the following year. So much sugar and alcohol and not nearly enough water in my system created chronic bladder infections. I also got pneumonia and a wicked fingernail fungus.
I also turned to bead therapy. At least it was creative.
But that's a lot of illness for me. I'm beginning to suspect they're all related somehow.
This is the most disorienting experience. Since I got staph, I've heard so many stories of people going into the hospital and then contracting staph, then how it takes months and months to get over it.
My writer instincts tell me that I would start to feel better if could sense a shape to these events. Similar to having a story come together in my head. So I'm telling myself this story, so it will make more sense and feel less like chaos.
I want this mysterious illness to have a shape. I want it be a purposeful journey through a meaningful landscape. The landscape is my body, mind and spirit. I'm searching for the narrative line.
I can't help but ponder the confusing comments that the doctors have made. Your diet has nothing to do with it? I find it unbelievable that a person with a medical degree can suggest that diet and nutrition has no bearing on one's state of health.
As for muddying the waters with health food, the vital, organic foods I eat are probably saving my life.
I think I've had some kind of an infection for a long time, and the doctors are just not finding it. I've probably had it at least since last fall, and maybe even longer than that. I don't know what it is yet, but I know that the reason I survived the staph infection is because of the clean, nutritious food I was eating, thinking I was on a cleanse for eczema.
Can't wait to get off the steroids. I'm not built for these chemicals. Feeling more than a bit psychotic today. I guess at least now I've got an excuse.
tracing my health history
What lead up to my getting Lyme? Maybe I can find out what's going on in the "now" by investigating my health history.
On February 1, 2004, I quit drinking red wine when I had a harrowing bout of acute cystitis. Red wine is believed by some doctors to trigger cystitis. So I quit.
Cystitis is called the “migraine of the loins,” because of its torturous pain. When it hits, you can't do anything but deal with it because its intensity demands that you drop everything else. It had become an annual routine over the past four or five previous years. Once a year like clockwork, the intense, searing pain and pressure would force me to stop whatever I was doing and deal with it. I'd cure myself by drinking copious amounts of lemon water, taking hot sitz baths, taking herbal remedies, whatever worked.
On that February day cystitis got me for the last time. I became determined to do whatever I had to do to never suffer from it again.
I researched other things that were believed by nutritionists to be triggers also, and cut them out as well. As the months went on I became an aesthete in my choice of foods and drinks, and because I'd always been used to dealing with problems through the haze of good wine, I also started dealing with feelings that started surfacing, like bubbles in a pond eventually do.
During that year, I started earning money writing. I discovered I had a lot of extra time in the evenings, when I had previously been too buzzed to be productive. With Evan, I wrote the contents of our business web site, countless marketing articles and four ebooks that began to sell and bring in an income.
In November I started getting this rash. I kept expecting it to go away as I adopted a cleansing diet. I ate very consciously and monitored closely any chemicals to which I exposed my skin. The rash got bad. I got anxious.
Feeling somewhat human this morning, as I cautiously cut back my use of the steroids a little earlier than the dermatologist's assistant directed. It is not easy for me to make this decision. I'd like to trust the doctors, do what they say, and have faith that they can cure me.
I don't feel clear about what to do, and I'm fearful of the rash reappearing, so I'm taking it one hour at a time.
Meantime, I'm having my blood tested for Lyme disease. I can't imagine how on earth I would have gotten Lyme, but my dear friend Saint Patricia, who happens to be a doctor, thinks I should get tested. She's concerned that I'm on steroids. She's been on the phone with me every week, asking for detailed descriptions of my rash. I wish I lived closer to her, but she's in another state, so we talk on the phone.
waiting for results
Had my blood drawn just after Fourth of July. It's getting tested at the only lab that Dr. Saint Patricia trusts: IGenIX laboratory in Palo Alto. Results should be in by Monday or Tuesday.
Meantime, I tell myself that it's not that important to know what is causing this illness, so much as training my focus on full steam, straight-ahead healing. I'm determined to be vibrantly healthy.
I also know how many other levels of healing are involved, and am feeling gratitude for the great blessing of this experience.
Gaining perspective. Normally, it wouldn't have occurred to me to gain perspective like this. Most people don't go there unless they're driven by crisis, illness or ruin.
I meet my shadow in the deepening shade.
Can one become a little panicky? That's what I was last night. All day I had been nauseous. I couldn't figure it out. The rash began reappearing too, which concerned me. I even broke down and cried for an instant. So tired of dealing with this.
With the insane itching, I was physically uncomfortable. Difficult to stay positive and say the mantras. I read myself to bed last with Rob Brezsny's book, Pronoia, which was a present from Evan when I came back home. I read about all the miraculous things that happen in our bodies while we sleep, without our even needing to be aware of them.
By morning, the rash had settled down quite a bit. What I hope is happening is the reaction phase of getting the steroids out of my system. The effect may seem bad at first, but I expect it to lessen as time goes on. It seems to get worse at night.
The only danger is if the antibiotics didn't completely kill off the bug or bugs that caused the rash and the staph in the first place. It would be good if I had a doctor, an MD who cared about my welfare, who could keep tabs on my white blood cell count, which can indicate what's going on.
I've been cautioned that the bug would come back even stronger if it's not actually killed. That's too frightening to imagine. So I don't.
I may have just been dealing with this for a lot longer than I ever guessed. The good news is that I feel that I'm on the verge, so close, to figuring it out and really reaching a point of wholeness, balance, and health.
Still waiting for the results of the blood test for Lyme's. With Dr. Saint Patricia, I feel better already. I've located a smart ally to assist me.
off the steroids
I think I get it now, how tricky and yet how crucial it is to be determined to create health.
I feel so much better after getting off the steroids. Mom supports me in not continuing and just as long as I keep a vigilant eye on the rashy areas, I will not. I think it's completed its job. Its important for me to get feedback from her and from Evan, who also thinks I shouldn't take it anymore.
Feel like I'm half inside, half outside of my head, a curious sensation. I seem determined to keep writing. It's the only thing I can do.
found a lyme expert
I finally found a doctor here who can help me. Just in the nick of time.
I knew it wasn't eczema. I've been misdiagnosed from the start. Why don't the MDs and the dermatologists know about Lyme? They made me feel bad, guilty for not having taken care of myself. When all along they were just too lazy to think outside their own boxes.
According to my blood tests from IGeniX, I have Lyme disease. It is characterized by an underlying bacteria population, a very nasty bug: the spirochete.
To make matters even more interesting, the steroids prescribed by the county doctor and by the dermatologist's assistant are contraindicated when Lyme is underlying, because steroids replicate the spirochetes.
The diagnosis of Lyme, to my relief (as relieved as you can be in the situation), explains a lot: the tremors, slow speech, brain fog, inability to sleep, manic emotions, the frustrating stammering, my feeling of dread and my dramatic energy crash last week, as well as the sudden return of the rash. There is a neurological component to Lyme's which apparently enables me to write, yet not speak very easily.
I am now, as of two days ago, back on antibiotics, under the care of this new doctor, who I trust. He's a Naturopathic doctor, an ND. Normally, he's not into prescribing pharmaceutical medications. He'd prefer to work with herbal remedies and homeopathics to return the body to balance, to a place where normal health can be restored. But he's started me on a strong antibiotic and a host of supportive herbs and other things, liver protectors and thyroid balancers, etc.
My friend Deena emailed to ask what the prognosis is. How long will I be sick? When will I get better?
I don't know what the long-term prognosis is, from the medical point of view. I only know what I tell myself. My personal prognosis is that every little cell in my body is healthy and happy and well, and even now conspiring to create jubilance in my body-mind and spirit. I sing little ditties about it and have posted up affirmations all over my house.
It's a fascinating trip, on one hand, when I'm able to stay rational about it. When the symptoms aren't fully stressing me out. I'm reacting to the new antibiotic, so there are new horrific symptoms to deal with. It's called a herxheimer reaction.
I have glimpses of sunny sky through the clouds. Those precious moments, when the brain fog lifts and my mind is suddenly clear, give me lots of hope.
My natural propensity is to turn lemons into lemonade. There is no other way to proceed through this landscape of icky-sick except singing.
As Winston Churchill is said to have advised, "when you're going through hell, keep going."
the first level of courage
to create radiant health
and beautiful skin that's worth admiring.”
Okay, this is a nightmare, but even so I'm confident I can kick it. I'm singing my mantras. Still, it's easier to be strong when it doesn't hurt so bad.
This is a bad day. Unbearable itching. Itching like this shouldn't be called itching. It's pain. I have nervous tremors in my hands, arms and neck, I stammer when I speak, and I have constant, dull arthritic pain in my wrists and knees. The most depressing part is that I look ugly. My face is rashing out too now. This too shall pass. Or if it doesn't, you can call me Elephant Girl.
Reading Pema Chodron's words help. Tonglen practice. When you're in pain, you simply say, “others feel this too.” That's the first level of courage. There are two more levels. The first is where I'm at this morning.
Pema says it helps you realize that you're not locked away in isolation, the only one in the world who feels this way. People in pain, whether it's physical, emotional or otherwise, always feel isolated.
Lately I've been overwhelmed with compassion for the suffering in this world. What do people do who drop into crisis and don't have anyone to help them, anyone who cares for them? I am so fortunate to have people who love me here.
I'm becoming another person, larger, yet also leaner. I'm being stripped down to an essential being who is able to feel for the very first time.
how does one get lyme?
Doctor Saint Patricia, Doctor of Chiropractic, Saint to all her friends and patients, had Lyme disease herself for ten years before it was diagnosed. She knows someone else who was misdiagnosed for twenty-something. I got a tick bite that became infected when I was ten. My ND says that it's possible the tick could have infected me then, and that I am just now experiencing the symptoms, almost forty years later.
There isn't a whole lot that the medical world knows about this disease, I'm discovering. They suspect that Lyme bacteria can be carried in a cat scratch, flea bite, mosquito sting, and an infected person's body fluids. You may be able to get from repeated sexual intercourse with an infected person. It's beginning to be accepted by the medical profession that Lyme is a lot more common than previously believed.
when the enemy is inside
Thict Nact Hahn talks about how we will find a way to end violence when we recognize that violence is inside us all.
It's easy to apply war metaphors to illness. What's more, it's effective. Naturally we want to destroy something that's harming us. We want to beat it, kill it, stomp it out. It's important to defend yourself. We use the war metaphors in casual talk. Arm yourself against the flu, add vitamin C to your arsenal.
It's difficult to even think outside the metaphor, it's integrated so deeply in our cultural consciousness. The ER doctors use it lavishly, and you can see their point. It does feel like waging war. Kill or be killed. You imagine you're engaged in face-to-face combat and the winner gets to live. Lyme is defined by an enemy inside: an apparently wily and resourceful spirochetal population.
Suddenly all the comic strips make sense. The enemies are clearly drawn, the Joker, the Penguin, Major Screw.
Here's one of the imagery techniques I use. In this battle, I always see myself winning. I envision the spirochetes swimming in my bloodstream, looking like ticks. I swim after them, chasing them with a lighted rod. When I touch them with it they shrivel up dead.
There is another tactic though, another useful way of thinking about illness without engaging the combat metaphor. Assimilation, where you perceive the enemy as looking similar to you. Not to say that I LIKE these little bastards swimming around in my bloodstream. No. I'm intent on killing them all.
But I'm also learning how to re-frame my perspective of this illness and assimilate its effect into my life. It's changing me. And right now I'm doing everything in my power to handle it the best I can. That means doing both, paradoxically: Combat and acceptance.
Never in my worst nightmare could I have imagined that I'd be writing about such a devastating, nerve-jangling beast, least of all from personal experience. But because of Lyme I'm changing alchemically, and so is my perception of it as devastating and icky.
a walk downtown
Got a nice walk in with Evan, first thing around 9 am. Our little town is dead on Sunday mornings. I miss walking downtown to Greta's Café. I can only make it as far as the street with all the London Plane trees, about three blocks. Everybody loves Mill Street.
We laugh that everyone's either in church or sleeping off their Saturday night, like we used to do. Nowadays, kale and cucumber juice is our drink of choice. Evan's skin is gleaming in the morning sun. He looks 22 years old.
I feel good. The shingles on my forehead and around my lips are barely active at the moment.
Last week was hell. It was like having sixteen hundred microscopic biting insects trapped in place between my eyes and in my eyebrows.
Now the skin there is mostly calm. Even my ankle hasn't swelled up any worse and the skin infections look less red on both legs. I feel sort of normal this morning until I try to answer the phone. The stammering is frustrating. And the tremors in my head. And the ache in my wrist. And the lesions on my lower back. (But aside from that Mrs. Lincoln, how did you enjoy the play?)
re-framing my story
Evan reminds me how our brains create pathways, habits of thinking. This is how the stories we repeat to ourselves and others become true.
He encourages me to re-frame my story. Watch my word choice. I agree. Remembering “What the Bleep,” the animated brainstorm, helps me visualize what's happening inside my head.
Re-framed story: Finally figured out what's wrong with me. Confident I'm on the right path now. Had to take the heavy-hitter antibiotics in the beginning, just to get me out of the red zone. Working with a Naturopath doctor and taking homeopathics to support my whole immune system. When I finish up the antibiotics I intend to take on a gentler healing routine, because the antibiotics override my natural immune system, and I prefer to work with it, not against it.
Short term memory is shot this morning. Wonder, can I blame all my brain farts over the years on Lyme?
here's what's up
I am tripping across the tricky landscape of attempting to heal the natural way, but meantime, I'm also strapped into the only health care I can afford right now, with the help of temporary aid from the state of California.
The experts at the community health center have informed me that I qualify for disability. I can hardly believe that with my own ears. Me--disabled! I am, normally the healthiest person I know. To qualify for disability is unbelievable. It feels like I've slipped into a deep, dark hole and can't get myself out. If I wasn't in such horrible pain, I would feel the frustration down to my toes.
Dr. Saint Patricia is the only doctor I talked to over the past few months who exhibited any curiosity about my rash, the near-death experience, and my horrible reaction to the antibiotics I took for the staph infection. she had suspected Lyme was present when I had that specific reaction.
Dr. Saint Patricia asked me detailed questions about all of the above, and listened to my answers. She's a brilliant diagnostician. She recognized that underneath the staph infection was another infection, or as it turns out, many co-infections, and that was why I was going through hell.
I'm going to heal completely, but not without first becoming a new person. Suffering pushes you beyond the boundaries of yourself. Physically this is a nightmare, but spiritually, I am thankful for every minute of it. When I'm not mortally depressed.
My right wrist is sore and my right knee. Does this indicate a swarm of spirochetes in my joint fluid? I'm still trying to understand how this works.
My speech is still slow and affected but I'm not walking all stiff-legged like C-P3O from Star Wars at the moment. Of course, it's hard to tell. I sit most of the time. The best news of the morning is that I honestly feel better. Still woke up with pronounced tremors in my fingers and hands, still have a bit of intense itchy-crawly pain on the forehead, but the swelling in my right ankle's gone down some and the skin on both shins and calves is not as red as it was yesterday, and I'm no longer worried about the staph infection returning. This is great news.
My mom asks why last week was so awful for me. I wish I could get it straight myself. From researching, I think it was the herxheimer reaction. But does that mean a reaction from starting on the antibiotics? Or is it also partially due to the Lyme cycle peak itself?
I suspect that my particular Lyme cycle, the classic four-week cycle according to Dr. Burrascano Jr., has always coincided with the week before my menstrual period. During the months I was suffering under the misconception that my rash was eczema, I searched desperately for a correlation between eczema and hormones. I couldn't find any reference to it.
Now I realize that it was the Lyme cycle that happens to peak while I'm premenstrual. What luck. And it's usually a full moon to boot...let the loonies out of the bin.
Vacillating between extremes. Felt pretty positive most of the day today, symptoms not horrible, just terrible. Then I heard from the Naturopath and it sent me into a black funk.
Trying to figure it out. He took an oath, Hippocrates, “do no harm,” and tells me he does not want to go in the direction of using antibiotics. And even so, he tells me because I am not out of the woods I have to use the drugs. He says because there is a neurological involvement, we have to address it. He calls it neuroborrellia.
He tells me again, that he thinks I should be on IV antibiotics, very likely for several weeks. This means getting a catheter stuck into my arm and bringing home a portable IV stand with a bag, and then injecting myself with antibiotics every day.
This depresses me. I don't have any idea if, A) it would even work, and B) how on earth I could afford that. I have no health insurance. I'm on the state of California's medical plan, temporarily, to help me pay the ER bill from a month ago.
Now I'm in the position of trying to get the help I need from the county health program. This program is profit-driven and deals with large numbers of people. I highly doubt that the infectious disease doctor with whom I've got an appointment on Friday will be well-versed in Lyme.
I doubt that this doctor will think an IV is necessary because the protocol he'll probably follow is the AMA protocol, which says Lyme disease is treatable with a course of oral antibiotics for thirty days. Period.
The problem is, there's so much evidence that long-term antibiotics are the way to go, the only way to prevent the symptoms from returning.
I'm not feeling so hopeful at this moment. I don't want the catheter, I don't want to stay on antibiotics, but I do want to kill these spirochetes. I do want to get completely well.
Evan's convinced, however, that I'm coming along really well. He is my cheerleader. He counts on his fingers. Look at the numbers, he says, you've only been on the antibiotics for 12 days. You added a second antibiotic on Friday. You herxed in misery for most of that time, but instead of that being a bad sign, he says, that proves the antibiotics are doing their job. They're killing the spirochetes efficiently.
The term the doctors use is “die-off.” As a Scorpio, I can relate. We're into dying and rising from the ashes.
trying to figure it out
They call Lyme the Great Imitator. It often goes misdiagnosed as one infection or another for a long time. Cystitis for example. Could my chronic cystitis attacks have been related to Lyme? What about the nail fungus, and the pneumonia that knocked me flat on my fanny a few years ago?
I'm learning that the infection is generally treated with antibiotics, but after the symptoms clear up and the coast is clear the spirochetes get back to work. Or they morph into other forms, or hide in your organs, or create cysts to protect themselves so your immune system has a hard time locating and recognizing them.
The neuro-confusion that I assumed was caused by the steroids was actually the Lyme, though the problem was exacerbated by the steroids. One way you know that Lyme has involved your brain is that you start stuttering and slow-talking. You get aphasia, which means you can't think of words.
Testing for Lyme's is tricky. It's difficult to know whether a negative test means no. And when you want to test whether or not the antibiotics got them all, it's hard to tell when the spirochetes are dead. The most well-informed doctors put patients on longterm antibiotics for 8 - 12 weeks or so, I guess just to make sure. But unfortunately, many patients experience a return of the symptoms. Dr. Saint Patricia still has episodes she suspects are from Lyme, headaches, irritable bowel, and colds that are tough to get over.
The ND I found just returned from a Lyme conference and he's learning the cutting edge info on it. It worries me, now that I hear him saying that I should have an IV in my arm. NDs aren't into pharmaceutical medications as a rule.
My brain's full.
I feel terrific tonight. This is a breakthrough, although there are actually new little raised bumps that hurt and itch violently. But I'm talking almost normally, and my mind is really clear. I'm even spell checking something for Evan right now.
It's like looking through a dirty windshield for a really long time, so long that you get used to the grime and don't even notice it anymore. Then someone comes along with a cloth and wipes a clean spot right in front of your nose.
I think my sister's right. I have to tune out other people's ideas about how long this is going to take for me to heal from.
I started noticing how good I was feeling while eating dinner. Might have been the flavors. Hot cooked sweet potato and ripe cool avocado with a mixed green salad full of dandelion leaves, sprinkled with a generous handful of sprouted beans. Oomm. And my favorite dressing of the moment, olive oil and brown rice vinegar. Mmm. Sweet potato and avocado together in one bite full is delectable.
I feel good enough to dance. My facial skin is rough where it got involved and rashy over the past couple of weeks, but it's hardly red anymore. My thigh skin hurts and so does my lower back, but my joints aren't too achy. And best of all I have great energy. I wish we could go dancing.
The cats are in a good mood, chasing the string under the paper bags on the floor. Evan's talking about potty-training them all. I can just see it, the two of us waiting in line behind them while Burt reads the morning paper on the pot.
a question of faith
I want to read a book I saw on beating Lyme. The writer says that even IV antibiotics only kill 85% of the spirochetes, leaving 15% stronger to fight. He claims that “suppressing therapies,” such as antibiotics, take away from your life instead of adding to it. He argues that people who go for a whole life-style change adds quality to their lives.
It's so wild to see things changing so fast in my body. The skin on my left hand tonight is insanely, painfully itchy. I'm watching as it gets more rashy and bumpy too. And yet I feel pretty good still. Hope that by morning it's better.
I've got to believe in my own body's ability to heal from this.
scheduling the nutritionals
Something about the quality of this morning brings me back to staying home sick when I was a kid in school. Can't tell exactly what reminds me of it, maybe the drone of a lawnmower down the street, or the cat snoring. Feels like everyone else is off doing their lives, and here I am, doing nothing.
Thank goodness for the Internet. Never alone.
Try as I may to adhere to my schedule it eludes me. A half-used journal has become the record-keeper of my nutritionals. I was calling them “meds,” but Evan suggested “nutritionals” instead. He's right. Calling them meds keeps me in the "I'm sick" frame of mind, whereas the term "nutritionals" suggests proactivity.
Keeping up with the vitamins and homeopathic remedies is like having a part time job. It requires a certain amount of concentration. Some supplements shouldn't be taken around food or drink, some shouldn't be taken with other remedies. The particular antibiotics I'm on should be taken with food. Then there are the drinks: 10 glasses of water throughout the day, with added minerals - thanks, Cynthia, they taste awful so I know they must be good for me. Next, we have Dr. Saint Patty's concoction, papaya-chalky but oy, potent.
Then there's Evan's freshly juiced green drinks: kale, dandelion greens, parsley, celery, cucumber, garlic, ginger. The more vile-tasting, the better. Green is good for healing the heart chakra too. Then there are the blood-purifying teas. Simmering burdock root and red clover on the stove top for 15 minutes is believed to release their blood-cleansing powers.
When I'm not drinking fresh green juice or water or downing supplements, I'm sipping green tea, an antioxidant. As a bonus it also supposedly reduces tooth decay.
All of the above is custom-designed to help me heal quickly and easily, and as a big bonus, give me smooth, shiny, radiant skin. Bring it on.
I bust out laughing tonight when Evan genuinely expresses his admiration of a little spot of skin on my shoulder, which is one place I've never had a rash. He says it's a sign of good things to come.
grand ave adventure
Got my walk in this morning. My first solo excursion since I've been sick.
Walking around our block is a little complicated. First you have to walk up a slight incline past three or four houses, then veer right at the next street. Then you turn left at the end of that block, because you can't turn right. Next, you pass the three or four old olive trees with the knobby trunks, and the house for sale. Keep going up to the next corner and turn right, then walk up Grand Avenue for two blocks, then turn right on our street. That's walking around the block.
Walking in public by myself for the first time in several weeks, I suddenly feel self-conscious. I'm wobbly, but I can fake it pretty well. Except I have to get a pair of sunglasses that fit over my spectacles. I can't wear my contact lenses anymore, but I'm way too near-sighted to go walking around without my glasses. I have to get a pair of prescription sunglasses, but till then, I just place my sunglasses on top of my regular glasses. I'm sure to start a fashion trend. Geeks with Lyme.
Felt great now, yet much more drained of energy than I was last night.
Last night was a miracle. Gotta have more nights like that. Other symptoms of the moment: the itchies are fairly painful, especially on my lower back. My entire back feels stressed, mostly around the spine. Skin lesions are weepy on my right leg in one spot, and there is more of a rash than I expected (I didn't expect any) on my ankles and calves. Right elbow is achy, on and off. During the night I had a few surprising electric-cattle-prod sensations inside my left hip. They wake me up and make me jump.
The good news is, I am celebrating two normal-talking days in a row.
stress & symptoms
Did I jinx myself by talking about how great I felt? I've been nauseous now for the last couple of hours and the fog in my brain has settled into the cracks and crannies. I'm stammering. Plus, my forehead is unbearably itchy-crawly again. No, I don't believe in jinxing myself. I believe it's stress.
It started during a phone call from my mom. She's wanting to get information about me and the Lyme test results over to the community health center doctor I'm supposed to see on Friday. We had a conversation about it and it really stressed me out. I can't think about details like where to find a copier machine between my house and the clinic. During our conversation my slow-talk returned.
Mom's my guardian angel, and I know she's only trying to reduce the risk of Something Going Wrong. But it felt like she was manufacturing more work for herself. I don't want her driving around in traffic, especially if it's unnecessary.
More to the point, I've haven't met this doctor yet. For all I know, he's likely to want to follow the AMA's protocol.
I've made that link before, between getting stressed out and the stammering slow-talk.
taking it with a grain
Evan took me to the bookstore today, one of my first outings for over a month that wasn't to the doctor's office. I was poring over the Harvard book and others, looking for more information about Lyme. Reading about late-stage or chronic Lyme really scared me.
When Evan came and found me in my chair, hunched over the pages of the book, I guess I looked pretty frightened.
"Let me see that," he said, lifting the heavy book from my lap.
He flipped through the pages and started laughing. Then he read me this passage out loud. It's so bizarre it made me smile too, and shook me out of the momentary fear-trap I'd gotten snarled in.
“In severe cases the sweat glands can be surgically removed from the armpits.” And they're not even talking about Lyme. They're talking about body odor.
Body odor, for goodness sake. Severe cases? What about changing your diet? If your armpits are that smelly, perhaps there's something wrong with your food program. Try eating veggies, grains and fruit instead of dead meat.
Thank heaven for Evan. Putting it in perspective. Gotta remember to take it all with a grain.
The confusing part now is about which path to choose for healing.
After researching Lyme I realize that there is debate, even fierce controversy, over how best to kill the spirochetes and eliminate the symptoms.
Some say long-term antibiotics. A lot of people, including the writer Amy Tan, who was misdiagnosed and thought she had a brain tumor, are lobbying for long-term. But not everyone responds to that. Some people's symptoms return, even after even eighteen months of antibiotics, even after intravenous treatment.
Others say a course of short-term antibiotics, and it's over. These are the conventional doctors who are heavily lobbied by the health insurance companies, who don't want to pay for long-term care.
Doesn't seem to me as if anybody knows for certain whether long-term abx, short-term abx, or something else is the right way. Maybe there are multiple right ways. Meantime, people are suffering and getting lost in the cracks between protocols.
living healthy takes commitment
Thank them for how crucial they've been in your education.”
The only thing about healing I know for certain is that it has to originate from me. And I have decided to be radiantly healthy. That's the most important goal in my life now. I believe I can achieve that goal.
This is no idle wish. Every day I work to create my life as a paradise. Every day I educate myself about healing Lyme.
It isn't convenient. It takes persistence, commitment and planning. It takes money for quality supplements and organic food.
It takes focus to stay on the path and constantly realign myself with the goal of vibrant health.
I apply myself every day to living healthy, and this is the path I was on even before I discovered I have Lyme disease. Since my diagnosis, I'm even more convinced that I have to take charge and make healthy choices, including (gasp!) eating health food.
I have been more genuinely surprised than anyone that my perfect health could be ambushed by bacteria. I wonder if my ND, who is recommending intravenous antibiotics, would honestly believe that I would be better off with an IV if he truly understood my intense commitment and approach to self-healing.
red wine ritual
Living healthy is fun. I am fine with not drinking. Believe me, this is coming from someone who used to be in love with her red wine ritual. It made me feel sensuous and lovely and dreamy. I was emotionally attached to it. And addicted.
I loved it, but over the years it got so I had to plan to go to the liquor store on Saturday every single week, because in Colorado there are blue laws and you can't buy wine in the grocery store, and the liquor stores aren't allowed to open on Sundays. Every other day of the week I could just pop over and pick up a nice bottle to compliment dinner.
So slowly, over a period of a few years, I became a secretly pathetic creature who always had to be aware of what day it was so I could be certain to have enough red wine on hand. I didn't dare get caught on a Sunday with nothing to sip at night.
I always had an excuse. At first it was because we'd just moved to Colorado, and moving was stressful. Then, it was because I was starting to make new friends and they always seemed happy to see a big carafe of wine on my counter top, and I was even happier when they wanted to hang out with me and laugh and swap stories and drink. Later, it was because of the divorce, and then moving again, and then it was really fun to get sloshed with Evan after working so physically hard on our house all day, and then, and then, and then....
So. I never thought it would be fun to not have a glass of crimson wine in my hand in the evening. But it is. I don't even think about it anymore. And now that I know about Lyme, I am so grateful that I dropped the habit in the beginning of 2004. I need all the energy I can muster, and alcohol isn't going to energize me.
Why'd I quit? I developed chronic cystitis. Red wine's a trigger. Now, looking back over the year and half since then, I suspect that my symptoms for Lyme disease were getting "worse" as I was getting better. Without knowing it, I was attacking the spirochetes through persistent cleansing and strengthening my immune system. As some of the spirochetes died off they created the rash.
The beginning of 2004 was when I began my commitment to living a radiantly healthy, creative and spiritual life. My health issues have been a major challenge ever since.
from "Voices of Wisdom" by Pema Chodron
When someone you know is sick, when you wonder what you can do about all the pain in the world, or when you're dealing with a crisis yourself, the Tibetan Buddhist practice of Tonglen offers a way to direct your awareness toward healing. "What keeps us unhappy," says Buddhist nun Pema Chodron, "is our tendency to seek pleasure and avoid pain."
Tonglen (the word means "giving and receiving") challenges you to embrace the undesirable aspects of experience and transform them, using the breath. On the inhalation, visualize taking in negativity and suffering; on the exhalation, radiate love and peace. Breathing in negativity might seem counterintuitive, even scary, but by opening your heart in this way you overcome fear and self-absorption while developing your capacity for compassion for yourself and others. This technique can be practiced in sitting meditation or during everyday activities, for example, while driving in traffic, or arguing with a friend.
happy birthday dad
I returned to the community health center to meet with the internal medicine doctor. After waiting for nearly two hours beyond my appointment time, Evan and I were about to give up and leave, when a woman behind the glass window finally called my name.
We waited again. This time in a freezing cold exam room, for another twenty minutes or so. At last the doctor came and moved us to another room, warmer. Little things make a big difference when you feel like shit.
He seems smart and agreed to work with my ND. In other words, he'll be the second-opinion guy, and sign off on my antibiotics prescriptions. This is very big. It means I can continue to get my scrips filled through the state program I'm on temporarily. Without this doctor's help, I was up the proverbial creek. Financially, I am unable to afford these drugs.
When I told him that his colleague had prescribed steroids, he groaned in pain. "Oh my god. That is so wrong," he said gravely, shaking his head. My ND had told me that one of the things that makes Lyme go chronic is the use of steroids.
I told him that I began to have this neurological trouble when I got on the steroids. I asked if he'd seen or treated any cases of Lyme, and he said he hadn't seen one in three years.
Evan later remarked that perhaps the doctor hadn't seen a case of Lyme in three years because they're all going to the family doctor for their rashes, and she's prescribing steroids. In other words, he hasn't seen any that he knows about.
New fun symptoms today: blinding headache, more rash, violent pain in my ankle skin and lower back. Forehead skin is worse, more itchy. Unbearable? I can't think of another way to say it. I can't stand it, but here it is, and here I am. I guess that makes it bearable. I am simmering in constant pain. It is exhausting. I don't know how to break the pain cycle, and I don't know what to do to relieve it. I'm getting to my wit's end, reaching a wall.
Tonglen practice is the only thing that helps. Also, a shoulder massage from Evan and email from people who love me.
Disappointed in these herx reactions. Been two weeks since I started on the first antibiotic and one week since I started on the second. Two weeks is a long time to bear these symptoms, especially coming off of the past ten months of the insane itching rash and the surprise killer staph infection. No wonder my body's so tired.
I read somewhere that the worse the herxheimer reactions are, the better the antibiotics are working. Theoretically that's because when the spirochetes die they release toxins into the body, and the toxins are what causes all the inflammation and pain.
Therefore, many of the herbal or homeopathic remedies I'm on are specifically for reducing inflammation. Plus I drink Evan's fresh yet bitter green juice and they're helping too.
I tell myself that the worse the pain gets, the closer I am to healing.
The important thing is, I feel like I can get the help I really need now. Now I just wonder when I have to get the catheter in and start the IV? I'm scheduled to play at my nephew's wedding in September. Can I play the flute with an IV stuck in my arm? Of course the really big question is the most difficult one: what am I going to wear?
Forehead's going nuts tonight. Blazing, itching, on fire. Researching how to handle the herx is enlightening. I drank the juice of a lemon about an hour ago and that did seem to calm it down a little bit. The in-your-face quality of this forehead pain is unbearable. But I guess it helps to be motivated when you're seeking answers.
My face is building up again with this rash. It had built up for about a week, then smoothed down quite a bit but left rough patches. Now those rough patches are crawling. Feels like microscopic insects biting and stinging. It doesn't stop.
I thought the herx was peaked out a week ago. Wrote about being over the hump. Guess that was a bit premature. Wondering if I should lower the dose of the antibiotics this weekend. This is almost too much to bear. I hope it's a sign that the spirochetes are dying off though. That's what it's supposed to be. Also, I read that the bigger the load of bacteria you've got, the worse the herx will be when the antibiotics get to work on them.
Evan just handed me a big jug of Noni juice and it's not too bad-tasting. I'm doing such a pure diet. That's got to have a bearing on this herx too. I'm reading most people's diets are too acidic, not alkaline enough. Mine is pretty alkaline these days.
But I'm not sure if that's helping me any. The herx itself could be a result, partially, from having such a good diet. Could “health food” be bad for me, after all?
no matter how much the world seems to resist,
because that is ultimately
what we have to give to this world and one another.
Sitting on a bench above Brauntosaurus Caves Park this afternoon with Evan. We're watching the ocean waves, observing a colony of pelicans, and listening to a domesticated parrot squawking raucously from his cage on the porch across the street.
An older woman saunters past us along the paved walkway above the beach. She stops and turns, waiting for a young boy who follows her. Her legs are lean and muscular, sticking out from her white shorts, but her waistband swells out like a bell. Her breasts sag under her shirt like yesterday's balloons.
The sun shines on all of us, the pelicans on their rock, the seagulls floating around, the women posing for pictures with each others' cameras. Me with my hairy legs hidden underneath my long cotton skirt. I can hear the waves crash against the rocks below and it reminds me of being very young.
My forehead is still crawling. One extremely tender spot on my head hurts like a headache, but it's on the outside, in the skin. The sores on my right thigh hurt. My ankle skin has been blistering and weepy for three or four days now, and my elbow is still arthritic. But I have a positive attitude. In spite of it all I feel optimistic.
I am confident I'm going to kick this thing.
There is a distinction between the types of rashes on my shins and the one on my thigh. The ones on my arms and legs are also different from the one on my face. Evan thinks maybe the ones on my shins are parasitic. He keeps them clean with tonics he mixes up, blends of aloe vera juice, tea tree oil or sodium chloride.
Right now, although no one is touching me, it feels like someone is prodding my ankle with a large electric needle. I just realized there was a hard bump on the skin and pushed on it. It popped and wept. The skin around it is now burning, violently itchy and red. The other rashes don't blister and weep.
Two hundred pelicans in a colony don't make as much noise as one parrot in a cage. Is it because the pelicans are free? The compassionate sun shines on the parrot and the pelicans.
montana de gold
The backs of my hands are bad, especially the right hand. The rash continues to expand, looking like blistered burns. My lower back is blistered the same way. Both make it impossible to get comfortable lying down. The hellish burning and itching pain is constant.
About 4:15, after not sleeping a wink all night, I got out of bed and went to the kitchen. I was compelled to press on the spots on my lower right shin and ankle. I kept pressing, popping blisters and sopping up the weepy fluid with paper towels for a half hour, meantime my forehead was going crazy with microscopic creepy crawleys again. Just after the sun rose I finally fell asleep, out of sheer exhaustion.
When I awoke at noon my heart was racing. It does this every morning. I have wicked tremors today too, and that constant, vibrating rumble inside my whole body, like I'm an engine idling. There is also pain in my wrists and shoulder joints today. About the only thing that doesn't hurt is my hair.
Great to see my niece this afternoon, with her two beautiful young daughters.
I want more girlfriends in my life again. Course, it's hard to create that right at this moment. "First, seek rest," like my dear friend Ginny says. Then, as I heal and start to get back to work and life again I'm looking forward to putting more energy into friendships.
I've done nothing but work for the last year and a half. I love working if working means writing and playing music. That's not a problem. But I also want to make more time for fun. Thank goodness my relationship with E is so good, but I know he'd also like more people to hang out with. We're good at being there for each other, but illness strains any relationship no matter how good it is.
Later in the afternoon, Evan drove me out to Montana de Gold. I have no energy for walking, but just sitting in the car, gazing out over the little bay felt really good.
I love the ocean, the perpetual movement, the smell, the colors. Today is all muted blues and grays, with a heavy fog sitting down close. It isn't cold, but soothing, cool. Evan took a walk down the beach. I sipped my lemon juice and watched the bay below.
From the sandy beach, two kayakers launched themselves and their boats into the water and rowed straight out toward the horizon, quickly adopting a rhythm that took them all the way out to a large bed of floating sea kelp, where they finally stopped. They didn't stop till they reached a bed of sea kelp. A long line of seabirds flew from north to south above the kayaks, in single file.
In the bookstore the other day, I picked up a book full of stories about miracle healings. One woman suggests that we each have the answers to our own healing within us. She says most people are just too busy and noisy to hear them. She says when you ask your guide or inner light or whatever you want to call it, they will provide an answer. You just have to be quiet in order to hear them.
So while I sat watching the water and the birds, I asked: What information do I need in order to bring about my full and complete healing?
Evan's walking back up towards the car, he sees me watching and gives me a sweet smile. He's bearing four small beach rocks, all distinct colors and shapes.
a paper bag and a string
Lyme disease is so bizarre. I felt really brilliant for about fifteen minutes, talking like my old self and everything.
Now suddenly I'm dizzy, trembling and nauseous. I was going to sit down and record the moment when I felt normal. Then the moment passed. I'm eating a ripe, organic avocado with a spoon. Maybe that'll help.
Playing with cats is an incredibly underrated healing activity.
Three cats are best, but do what you can. Spark doesn't like to play that much. She's more interested in food or keeping watch out the window, protecting us from foreign invaders. But the other two, Court and Burt, are prime players.
Court's almost always ready to play, even though she's five years old. Maine Coons are like that. When she was little she'd play by herself vigorously, for twenty minute stretches. What a great cat. Evan is of the opinion that she's the most annoying of the three. That's true too.
Before I got sick, I didn't take much time to play with them. We'd buy those furry stuffed mice, and toss one across the floor as we were walking out the door for the day. The cats would glance at at languidly, then stare at the door shutting. Their favorite toys are paper bags spread out on the floor, and a long string.
Since I've been sick, I play with them every night. I have to, or they keep me awake during the night because they're indoor cats and they need their exercise. Pull the string under the bag so it trails along like a mouse's tail. Court pounces as it disappears, capturing it under her big paw casually, then turns away as if disinterested. I yank on it slightly, and she pounces again, sliding across the carpet on the paper bag. The string gets away.
Tomorrow I'll talk with the ND. We'll discuss symptoms. He'll probably tell me I need to start the IV antibiotics. I wonder how that'll affect my life, having an IV in my arm. How am I going to pay for it?
Tonight I'm taking extra homeopathics for pain. Tylenol doesn't help me at all, neither does aspirin.
The pain is in my skin, focusing my entire attention. It's all-encompassing and it never lets up. I'm tired. I wonder how much longer I can bear it.
essential oils therapy
Something unusual happened today. My mom traveled to the center of the galactic universe (wait. that's not the unusual part) She brought me back a very important message. Try essential oils. Now, I don't know about you, but I believe that if something works, it isn't prudent to question the delivery system. Just use it, and give thanks.
So thanks to my mom, my main earthly guardian angel, I now have a way to deal with that incredible constant pain, the pain that makes me not think straight. I'm trying it out anyway. So far, the oils seem to soothe, if not stop, the pain.
Last week, the ND had suggested that I try lavender oil to reduce the pain, but I used a lesser grade and it didn't feel good so I stopped. This is grade A lavender essential oil, which as my mom reminds me, was used routinely in hospitals, long ago, during less medically-sophisticated times, for its pain-relieving and antiseptic qualities. Just getting a whiff of it makes your whole body relax.
I'm also using heliachrism essential oil. This is not cheap. A bottle as tall as two lines of Helvetica font size 12 costs $50. I expect it to deliver what it promises, which is to heal damaged nerve tissue and synapses, among other wonderful things. I'm determined to believe that it's going to help. Other people have said it helped them, and I believe it's going to help me too.
There's more: Clarity oil and defense oil. Clarity oil is for the brain fog that accompanies Lyme. Brain fog is what people who don't have it endearingly call it. Defense oil is particularly alleged to address the Lyme bacteria and kill it off without creating any adverse reactions. I'm ready for that. Defense oil smells spicy, cinnamony, like something good to eat. I rubbed a little bit on the bottoms of my feet earlier and now my feet are deliciously toasty.
This is hell. The antibiotics are causing a nightmarish return of the rash. It's definitely spread in my lower legs. I have a sense that I'm improved in a general sense since I started on the abx, but then I have days like the past two, where my legs swell up like water balloons and thousands of teeny razors stab my skin and prevent me from sleeping.
I'm so grateful for my beautiful mom and her courageous trip to the galactic heart of the universe.
Oh, the unusual part? I didn't spend the day sitting at my computer.
to face whatever comes your way.
You can transform an unexpected turn of events
into a positive process -- one that sets you on the right path
and teaches you something about yourself along the way.”
Good. I love it when the cosmos aligns with my own determination to heal. I'm doing it anyway, but gee whiz, it's great to have some help from the universe.
I want to start walking. Rather, I'd prefer to start dancing on my own two feet down that path.
This morning, like so many other mornings, my legs are like tightly-filled water balloons. They're heavy and tight. Mentally, I feel a little more "on" than yesterday. It's still early, if 12:30 pm is early, and I'm usually better earlier in the day, though not always.
Looking forward to waking up and feeling my heart beat at a normal tempo, peacefully, instead of racing. I'll be very happy not to wake up to an itchy forehead (that stays terribly itchy all day), and a tremor in my hands and neck.
But today I've got the essential oils and I'm using them. They helped somewhat last night as I was getting into bed, which has been the worst time. It's impossible to get comfortable when so much of my body is covered in lesions. The slice of time when it hurt unbearably was cut down considerably. Thanks to Evan's shoulder massage, the Tonglen breathing meditation and the essential oils, I was able to relax enough to sleep through the night. That's so important because nighttime is when most of the healing can happen.
I spray on the lavender blend every twenty minutes or so. It takes genuine effort to remember to take all the right supplements, antibiotics and oils at the right time in the right amounts. It takes more effort than I ever imagined I'd have to put forth to heal myself--I considered myself vibrantly healthy before this unexpected turn of events.
Thankful that the cosmos is aligning on my side. It can help me remember to make choices that work to heal me now.
and visualize the Symptoms Bonfire getting weaker.”
Yesterday on the phone, Rebecca told me that I had to start working on healing myself. She told me that I had two bonfires going, and it was up to me to choose which one to feed.
I've decided not to add more fuel to the Symptoms Bonfire. I've decided to start feeding this other bonfire instead, the one made of the passion and creativity I feel inside when I think about being healthy again.
Talked to a friend who knew someone in Connecticut. She'd been misdiagnosed with one condition or the other for five years before they detected Lyme disease and began treatment. And Connecticut is considered ground zero for Lyme. Why haven't the doctors there woken up?
The intense media buzz about West Nile Virus is mind-boggling, when Lyme's is so much more widespread and equally as potentially devastating. I am waging my own fight to restore my body's systems back to balance. But I also want to help people who are getting misdiagnosed. Nothing compares with the relief of a correct diagnosis. That's when the healing process can truly begin.
Here's a good place to practice your powers of imagination, visualize me now tossing a big log onto the Creativity Bonfire. We need more productivity, love and peace in our world. And correct information. And most of all, healing.
Conditions like illness, loss or grief force you to think about things in a fresh way. I'm consciously taking the opportunity here to think about pretty much everything in a new way. I want to change the course of my life. I think that's one of the brilliant gifts this illness is giving me.
At the heart of every important quest lies a question that contains the key to the answer. Our questions can change from time to time. I've been asking lots of questions along this path. Sensing subtle changes in my inner garden's weather.
My question has shifted from "how do I heal myself from Lyme," to: "What do I want to do with my life when I get well?"
When I picture my life as a chronological progression, I imagine the future, and it's very bright. I am emerging into that brightness from a dark place. I don't believe in the duality of dark and light, but it's a convenient metaphor.
I may have hid my light under a bushel, as Rebecca phrased it. I don't plan to hide it anymore. I may have been afraid to use my gifts. I'm not afraid anymore. In fact, one of the things I want to do with my life is start singing.
Some of us are fighting to get healthy and some of us seem to be fighting to get ill. Like smoking cigarettes. As a flute player, I've never been a fan of smoking, though I did smoke for one month when I was 24 years old and thought I was a bad ass. I smoked those hand-rolled clove imports from Jakarta. Thought they were so cool. But the day I pulled a long black hair out of my ciggy was the day I quit. Now if I ever smell a clove ciggy burning it turns my stomach.
Years ago, I attended a poetry performance of Allen Ginsberg's at McCabe's Guitar Shop in Santa Monica. He walked out onto the tiny stage and a woman in the front row popped out of her seat and reached up to place a long flower lei around his neck. He bowed, then sat cross-legged and began squeezing his harmonium and rhythmically chanting "Don't smoke the government shit." It was an earnest ditty, full of funny rhymes and it got big laughs out of the audience. During the break, a lot of people headed outside into the summer air to light up a cigarette.
Ginsberg's song described how government-subsidized companies put untold amounts of poisons and toxins in their cigarettes and addict the young kids. His hilarious lyrics specifically advise the kids to go ahead and smoke, smoke anything, everything, except the government shit.
I remembered that Ginsberg song this morning, while I was lying in bed doing the homework that Rebecca gave me yesterday. My task is to think of all the gifts I have and be grateful for every single one of them, before I get out of bed. Every day.
As I was attempting to focus on my task, and ignore the violent itching and nerve pain in my skin, a really nasty sound broke my concentration. Evan's teenage son was hacking himself awake in the guest bedroom. Smoking a pack of Camel's a day will cause a cough like that.
Here's this beautiful young man, choosing to destroy healthy cells. Excited about it. And meantime, here I am in the next room, visualizing, listing, breathing, thanking and banking on my body for creating healthy cells. Excited about it.
What an ironic species we are.
Wrong-Doing and Right-Doing
There is a field
I'll meet you there.
In the Babylonian myth about Inanna, the Queen of Heaven, Inanna descends into the Underworld upon an invitation from her sister, the Queen of Hell. Inanna frets about what to wear. Her servant is a little afraid about sending her mistress off to the Underworld, but nevertheless, she helps prepare Inanna's prettiest dress and curls her hair. The servant's concern mounts when Inanna finally tells her where she's going. But Inanna quells her fears by telling her that if she doesn't come back within three days to come looking.
Inanna doesn't come back. She's having a rough trip. How rough? She has hung her own carcass on a hook. When she does return she is a different girl altogether. She's gone through a door that's sealed tight behind her. She's undergone the transformation of initiation.
Stretched and bursting, your mother pushes you into this world. Her life is irrevocably changed. One look into your eyes and her maiden self is lost to her past. A new self is born, the mother.
Last night a friend in my community asked me where I'd been for the past two months. "You just sort of disappeared," she said.
I told her I'd been in the underworld, hanging my skinny-ass carcass on the hook, and that I'd undergone a complete and thorough change. Funny how saying those words pales in comparison to actually doing the changing.
seeking the goddess of change
that something valuable will emerge when we step into the unknown.
There are elements of surrender and letting go
which have more to do with flexibility and the ability to change direction,
than with defeat and annihilation.
When my friend Kim asked what I'd been doing in the year(s) prior to my getting Lyme disease, my mind's eye conjured pictures of patiently building, literally building my house in Taos. Hand-mixing adobe in wheelbarrow after wheelbarrow and building a new life from recycled parts. I see Evan and me driving our rented moving van away, three years later, ashes from a nearby forest fire raining down on the highway for miles, like an exodus scene in the Bible.
The pictures floated by, pages flipping backwards in a faded photo album. I saw myself prior to building my house. Giving up my seventeen-year marriage in a lawyer's office on Canyon Blvd in Boulder, my husband and I somberly signing the separation contract on the bottom line. Afterwards, in the parking lot, we hugged and held each other tenderly, both of us crying. A few minutes later we drove our separate ways. The summer storm clouds let go, their large raindrops drenching the road ahead and behind.
I saw myself back in time, even farther back and in a dimmer light. Leaving the hospital with no baby in my arms. Looking back beyond that, I saw myself at another funeral for a friend. I saw myself leaving behind a cherished job, teaching writing. So many moves in so many years had frayed the strings of connection I had tenuously knit together.
Moving from loss to loss like skipping stones over water I could see how grievances tie themselves to each other, making a kind of chain of events of disparate situations. I can see the beauty in all of these losses. After all, if each of these dear dreams had never existed in the first place, how much less rich would my life be.
If there is a goddess of flexibility I need you now. I seek the deity of the ability to surrender. I want to learn how to change directions without losing my way.
The year previous to getting Lyme disease, I cleaned houses. Cleaning and clearing clutter was my way of serving others, of simplifying my life. Getting down to the pure basics and preparing myself for whatever stage was to follow.
It hasn't always been easy, yet I have always trusted in the value of stepping into the unknown. Joseph Campbell quotes this advice, offered to a young Native American upon his initiation:
you will see a great chasm.
It is not as wide as you think.
community hell center
While waiting in a freezing cold doctor's office in my local community health center one day last month, under those fabulous florescent lights that bring out all my symptoms, I browsed the pages of the June 2005 JAMA, the Journal of the American Medical Association.
Absolutely no mention of Lyme disease, which experts are calling an epidemic. Not surprising. But judging from the frequency of the slick, four-page pharmaceutical ads, the advertising dollars they pour into JAMA could feed an entire nation, perhaps even this one. These high-dollar ads reflect the American obsession with pharmaceuticals as the only treatment for regaining health. But how healthy are we? The health workers themselves, without exception, all appear unhealthy. Not an inspiring bunch.
I flipped to the brief bulletins. Interestingly, one of these reported that the percentage of new patient enrollment in CHCs such as the one I sat shivering in were rising fast. Since 2003 the percentage was up by 11% to as high as 73% in some areas. These are people who do not have any medical insurance at all. Like me.
The bulletin went on to report that hospital emergency rooms are overwhelmed these days with these uncovered people. I too, fall into that category, since I was forced to go there in an effort to save my own life in June.
In fact, it was the nurse practitioner at the local women's clinic advised me to get to the ER when I limped into her exam room with staph. "You need IV antibiotics. Go to ER. Legally, they can't turn you away."
The health center waiting room is a vortex for the community's left out, left-over people, the pariahs, the uninsured self-employed. Like me. A television blaring cartoons sits high on the wall spewing "entertainment" into the crowded room full of waiting people in various stages of falling apart.
You can wait for up to two hours for your appointment. The restroom is disgraceful. This is not a place that invites people to take responsibility for their own health care.
heart of art
This is another good day. Itchy, yes. Fatigued, yes. But this morning I was able to work and last night I had a great conversation with Dr. Saint Patricia until midnight. Since she knows firsthand about Lyme, talking with her makes me feel less crazy. She's also hilarious and busts me up even when we're both hurting. I just got back from an excursion to the art store where I have been wanting to go for two months. And tonight I'm going to have some fun.
I told my friend last night that having active Lyme disease wouldn't be so terribly horrible if once in a while you could take the day off, like a vacation day. Time off for good behavior. Well, last week I had at least two whole days where I felt mostly normal, where my symptoms seemed to be less intense, the nerves in my skin hurt only hurt marginally. I was even talking fine and not incredibly tired. Getting a good night's sleep is so important. If I miss a whole night of sleep, might as well write off the next day too. I love getting sleep. It's when the body can really enter into a healing stage, when our minds are off in dreamland and not interfering.
So I'm into an art project tonight. Art makes a big difference in the way I feel about myself. Engaging creatively makes me actually feel normal, gets me out of that mental loop the pain causes. I try to pay attention to the repetitions of my mind, to replace the negative affirmations that I'm barely even conscious with positive ones. Sometimes it's really a challenge. Especially when things hurt and I can't think straight. Sure, it's way easier to be positive when everything's peachy.
Making art is my vacation. My time off from Lyme. I hope to get good enough to be like my two little nieces I saw a few weeks ago. They can crank out drawings faster than a Xerox machine. I love their style.
And my flute student too. She drew me an adorable scene that I hung on the cabinet where I keep all my supplements.
In her vision of me, I'm playing my flute seated on a park bench under a big leafy tree, at the edge of a beautiful lake. A gentle breeze ripples through the air and a bird flies past. Bushes bursting with purple blooms line the edge of a cobblestone path, and the sun shines generously over everything.
She also wrote me a card that said she misses me and can't wait until her next flute lesson. I can't wait till I feel good enough to do that.
Making art and music puts the treat back in treatment.
deceit & confusion in the community health center
One week, the doctor at the health center tells me that he'll be glad to work with the ND I'm seeing because this ND is educated about Lyme and can help me heal. The health center doc tells me to go ahead and get my antibiotics through their pharmacy. He'll prescribe what the ND suggests.
The following week the same health center doc informs me that he can no longer help me. He's been taken off my case. There was a committee meeting about it. But, he assures me, you can still get your meds through our pharmacy.
On Thursday I received a call from the pharmacy. Can't fill my order. Hasn't been approved by the medical director.
Confused, I call the medical director. I'm told to call my doctor in town. I don't have a doctor anymore, I explain, the medical director took him off my case.
I hang up. It's Friday afternoon, and I'm getting the runaround again. The weekend passes. My skin begins to clear up, not so horribly red and boiled looking. Monday rolls around. I email Costco to find out if they'll fill an ND's scrip. They will, for antibiotics. But even so, this one is expensive.
I go to the health center again yesterday. Doc won't be able to advise you, I'm told. He's not your doc anymore. I get that, I say. Let me see him anyway, and by the way, I want my complete medical records.
They tell me it'll be two weeks. Lots of people in front of you want their records too. I imagine they do, I think, they want the hell out of here just like I do.
I can't wait two weeks, I say. I may need to see an outside doctor, someone who can help me get well, and I need my charts.
Two weeks, she says. Can I help? I tell her, I have a master's degree in English, I can work a Xerox machine. She says no.
Then I'll just have to call the Insurance Commissioner, and the State Medical Boards, I tell her, and reach for my bag. I have no cell phone and no clue what their number is, but it doesn't matter. At the mere mention of "Insurance Commissioner," all the health care workers behind the glass stop dead in their tracks and turn to look at me. They look like mice who just noticed the cat.
Five o'clock, she tells me. No sooner. And that'll be fifteen dollars.
I reach into my wallet and pull out a 20 although I really think it's ridiculous I have to pay them for my own medical records. Complete records, I say, all the lab work too.
I'm ushered into a room to wait to talk to my ex-doc. I have no idea what I'm going to say, except to ask him, what happened? A nurse comes in and hands me a manila envelope. Here are your records, she says. The doctor will be right with you.
He comes in, opens up the chart on me, and immediately I notice that they've failed to copy one whole half of the papers in my chart.
I want my money back, I tell him, or give me all of my records. I just paid for those.
There is more confusion, between him, a few nurses, some passersby in the hall. I look around the dismal exam room and the blaring colors of the chart displaying the gastrointestinal system. Actual fresh air breezes in from an open window. Must be some mistake. Real air in here? It could hurt somebody.
On Friday I got shafted in the very same way I've observed, through my Internet research, other Lyme patients getting shafted by Lyme-illiterate doctors. I was given an ultimatum by the medical director. My scrip ran out, and my ND had written a scrip for a different antibiotic to see if it would help me any better with this terrible skin herx.
My ND doctor is not affiliated with the community health center, but he's a Lyme expert I trust. The protocol for Lyme disease treatment is far from agreed upon in the medical community. My ND and the MD from the health had conversed on Thursday. As far as I knew, everyone loved everyone, and it seemed for one bright, shining instant that I was going to be able to continue getting my antibiotics through the health center, which means I can afford them. Outside of the health center, I probably cannot afford them, since I'm uninsured.
So, imagine my surprise when someone from the pharmacy calls me Friday and announces that they can no longer fill my ND's scrips. And by the way, they've taken my health center MD off my case, so to speak.
This story that is just beginning to get interesting. I saw the health center MD on Thursday morning, and he showed me my charts. The medical director (and whoever else on high) had removed his remarks from my chart, where he had amicably agreed to work with my ND to make me better.
Even more intriguingly, the MD who had prescribed steroids for me in June, thus fiercely complicating my symptoms and making me really sick with Lyme, well, her comments had been altered on my charts. If this sounds illegal to you, you're not alone.
In my opinion, the bottom line is that they care more about saving their asses than about allowing a patient to continue on a path that is working for her. They are afraid that since corticosteroids are contraindicated when Lyme bacteria is present, that I might sick a lawyer on them. But the funny thing is, I hadn't even had the Lyme test when that MD prescribed the steroids.
She didn't know. I didn't know, although I suspected it.
She just ignorantly told me that I had eczema and that I needed steroids, and whipped off a scrip. She was quite rude. She actually told me that I was too late and out of luck. I find these people annoying and incurious. The more I deal with them, the less I like their way of doing business.
I know this is confusing. But suffice it to say that what happened Friday was that the pharmacy, which I am legally entitled to use, cut me off. The ultimatum was this: I start over with all kinds of tests for auto-immune deficiency diseases, drop my ND, ignore the Lyme diagnosis from IGenIX and go completely with the community health center doctors.
They sent my blood out for a second Lyme test, without my knowing it. Now they're telling me that even though the Western Blot test performed by the Igenix lab was positive in July, the Lyme test the health center ran is negative. A test which is notoriously inaccurate. The ELISA.
They're telling me that they're not certain I have Lyme disease.
They need to make certain, so instead of continuing on with the medicine that is clearly making me better, they're going to make me stop. They now require that I get an MRI and a bunch of other tests. They suspect that I have Multiple sclerosis.
It makes absolutely no sense to me.
As sick as I am, now I have to argue and advocate for my own healing path, when it would be so simple for them to just allow things to continue the way they were going. But I'm not arguing. As of Friday, I'm not even being acknowledged by the doctors at the community health center anymore, and unless I agree to drop my ND and go with their doctors and submit to their tests, I won't ever be.
At this point, I've cranked up my remaining stash of antibiotics to 1,000 mgs per day, which is high for this particular abx, according to my ND. But I've had lots of arrhythmia, which I do not like, and I still feel like it's too early to get off the antibiotics altogether.
or regulated. It isn't true that everyone should follow one path.
Listen to your own truth.
It's amazing what a good meal will do for you.
Just finished dinner. Baked salmon inside my favorite black handmade casserole dish, with sliced Meyer's lemons, yellow onions, green olives and these tiny little red rose potatoes my mom, the guardian angel, brought me from the farmer's market on Saturday.
Before dinner I was fuzzy and foggy and feeling "all in a kerfuffle," as my old friend Gerald Johnson would say. But right now it's like, Lyme who? Symptoms, me? All I feel right now is fat and happy. Hallelujah.
Yesterday we bought one of those inflatable exercise balls you can sit on. Now I can stretch my achy lower back, write, and play with the cats all at the same time. I love this thing. About ten days ago I started having genuine muscle soreness, which is a common symptom in most Lyme patients, but I just never noticed any before. I don't think I had it. I'm taking LymeMed, a homeopathic remedy, for muscle and joint pain. I have to say I'm very delighted not to be experiencing any arthritis pain at the moment. Last week I felt a little in my knees while I was on a long walk which included some stairs down to the beach, but that was it.
Feeling gratitude for everything that feels good tonight. Focusing on what's working.
Meantime, I've had to step outside the lines and get my own antibiotics. Costco. The pharmacy there was very polite, cooperative and answered my emails quickly. They informed me that although Naturopaths are restricted in their ability to write scrips, they saw no problem with antibiotics. I was starting to feel so darn good last week. I just don't want to stop the antibiotics right now.
I am getting better. Now I guess I should go wash the dinner dishes. No rest for the satiated.
"What did your doctor prescribe this for?" The pharmacist asks as I tuck the small Costco bag into my purse. She has left the sanctuary of the back room, behind the glass, to come after me as I'm about to leave.
"Lyme," I tell her. "I know it's not the usual antibiotic, but I have skin issues." I hold up my arm so she can see.
"Oh," she nods and smiles. "Okay" she says, but still looks concerned.
On the way out to the car I ponder whether the pharmacist usually questions peoples' prescriptions. Or is it because this was a prescription written by a Naturopath, not an MD?
The other day I was writing about how the people in the community health center all look sick. Even the health care workers don't look like they're at all proactive about taking care of themselves. I feel like I live in a different world altogether when I'm there.
In my world, we juice organic veggies almost every single day. We try to exercise daily and laugh and be creative and express our love for our friends and family. We don't drink or smoke, and not because we "shouldn't," but because we've tried those things and found that they don't fit with the vital, gracious lives we want to live.
In my world, we're profoundly interested in having fun and being healthy to the core. Working is very important, but only in the sense of Right Livelihood, to me. I watched my dad burn out at the tender age of 51 while sacrificing his joie de vivre for the studio heads at Universal. He didn't get time in his life to continue to explore the authentic creative self he'd enjoyed as a young man.
I feel like I owe him that, as one of his daughters, to live my life healthy, free and happy. And as I understand it, freedom costs something. In this case, the cost is that I have to take responsibility for attending to my own healing.
I wish the community health center reflected more people like me. I go there with a great deal of apprehension, because I can feel my independence being drained out of me the minute I turn in the driveway. My socks fall down, my hair frizzes, I start shuffling instead of walking. I fear I may even start drooling.
I'm so sick and so not insured. So I'm grateful for the community health center, while at the same time whenever I enter that world, I feel the force of something working on me. I'm a foreigner there.
mandalas and bicycle helmets
More and more, I realize that the lesson of this disease has to do with me recognizing my own part in the cure. I read a description of coloring mandalas, and why the act of coloring is so helpful for most people in a healing crisis.
My first reaction to learning that coloring is good for you? Wa-hooo!
I probably spent thousands of hours throughout my childhood coloring. I still love coloring books. So now I hear I'm actually engaged in healing while doing it, my inner-coloring-book-lover is pretty happy.
It makes sense. We all have a chitter-chattering voice going on in our heads at any given moment. What's it saying? It may be repeating worries, fears or other negative memes. I know that mine has, and it's caused underlying stress that I believe probably opened the way for infection in my body.
I've changed my inner mantras in the past few months. 'I choose health' is one that I repeat now. Given enough repetition, those repeated phrases are literally recorded as "reality" by our cells. That's what's meant by the phrase, we create our own reality.
Mandala research shows that when you're coloring, your conscious mind is turned off, or the chatter is turned down at least. It's similar to being in a dream state. With your standard chatter quieted, your unconscious mind, which is vastly larger than the conscious tip of the iceberg, is able to talk to you. Answers can present themselves. You can receive information about the next step for healing.
Any kind of coloring will work. Mandalas are special for many reasons, and probably the best kind of design because of their circular symmetry. But I'll color anything handy. I just painted Evan's bicycle helmet (he asked!). It started out plain white. Now it's sky blue and covered with vines, leaves, flowers, a bird and a butterfly. The palette and the leaf design was inspired by a little book I have on William Morris. I had such a good time coloring I didn't want the project to end. Now I'm eying the white cabinet where we keep all our supplements. A perfect white canvas.
It may be pure synchronicity, but while I was concentrating on coloring in my designs, I really couldn't feel the pain, which has been so constant that a week or two ago, it broke me down. No joke: art saves lives.
advocating for yourself
I'm on the Internet all day long. Surfing for other people's stories about healing from Lyme. What I want to know, when I get sucked into other peoples' experiences, is: who are these people? How do they eat? What do they do to handle stress? Are they using alternative treatments too, or simply relying on western medicine to cure them?
I know it's important for anyone in any condition, healthy or not, to make an effort to cure themselves. No matter what the doctors say, or what anybody else says. It's up to us. No one lives inside our bodies but us. Only we can really know how we feel, what we need, moment to moment what can make us healthier.
I have a strong belief that our bodies are magnificent organisms, capable of self-repair and self-healing beyond our wildest imaginings.
Today I had to advocate for myself again, at my appointment with the health center. I know I'm not alone, that there are literally thousands of others with Lyme who are standing in my same shoes, being put in this position. But it does make you feel all alone to have to stand up for yourself when you are so sick.
This diary contains my documentation, to the best of my ability, of my account of what happened to me at the community health center over the past two months. Because I write down everything that happens, I've got copious notes. It's just the way I am. Because Lyme has taken my normally quick mouth and set it on the slow burner, I have a hard time talking about what's happening to me.
But I can still write my story, this gritty story of health care in America. This is a success story. I'm beating Lyme. I'm willing to do what it takes to get completely better, in spite of the conventional medical practice.
Thank goodness for the Lyme literate doctors who are listening to their patients and educating themselves. They are in a paradigm shift, as we all are. These are brave and astute doctors who really care more for their patients' wellbeing than making their medical practice a business. They aren't afraid to help people in need.
This diary is a record of my ongoing research. I'm convinced that the way I eat, my patterns of thought, my unconscious beliefs and other mysterious forces are at work here.
Anyway, I have a big bowl of organic black beans and quinoa, tossed with snippets of dandelion greens and slices of ripe avocado in front of me, so I'm going to go eat.
I sea salt and C
Today is another very good day. Yesterday wasn't so good.
I tell friends, when they ask if I'm getting better, "Yes! And it's a roller coaster of symptoms." But one can always expect a miracle, right? I am planning on tomorrow being an excellent day as well.
Yesterday, come to think of it, had its ups and downs. The entire day wasn't awful, the evening shook out pretty nicely. In fact, for the last three nights, I have not had acute skin pain as I try to fall asleep - lemme hear a big HALLELUJAH! Amen, sisters and brothers. So, I think I'm shaking up the healing schedule. My goal every day is to keep on changing it, recognize the patterns of pain, and change them. I accomplish this by changing my supplements subtly.
This week the naturopath also had me add another antibiotic into the mix, which wasn't so subtle. This abx is not typically used for Lyme disease. But with the majority of my illness being processed through my skin, this abx is a miracle to me right now. My skin, at least the skin on my arms if not my legs, has very nearly cleared up. This is astounding, considering what I looked like even just a few days ago. This abx is supposed to address skin troubles, and it sure is addressing mine. This is reason to smile.
I also re-read a page online this week about treating Lyme with sea salt and vitamin C. I have to say that after the expense of all the homeopathics and the antibiotics, this ultra cheap method appeals to me. Of course, I'm thrilled with the way things are going healing-wise at this time, but I don't see any harm in adding some sea salt and C into my diet also. First time I tried it was two days ago, and my skin looked visibly better by the evening. Less purple, less swelled. In some places the scabs are now completely gone. Now, why are my symptoms clearing up? Probably as a result of a mixture of things.
My ND doesn't want me to start on too many things at once - I'm wanting to start on Samento, for example - and I haven't mentioned the sea salt and C to him yet. I understand why he wants to be cautious but I'm impatient with being a patient. I am so determined to heal.
Sea salt and C tastes terrible, I'm using bulk powder C and health food store sea salt (it comes in tablets but I haven't ordered those through the pharmacy yet - no need for a scrip or anything). You're supposed to drink a ton of water with this method and be ready to spend a lot of time on the pot.
Keeping things moving is the name of the Lyme game.
"I do know when you're going through this it feels like you'll never get better. But you're on the road now."
I never thought I'd hear those words, emailed to me by my friend, sister, doctor, fellow Lyme patient and all-around adviser Dr. Saint Patricia. But today I definitely feel good. Symptoms still flirting around the edges. Brain's still a bit on neurologically disorganized side (at least I can still blame that on something), still waking up tired, but even my skin is looking better today. Just tinges of an edgy cutting sensation on my thigh rash.
Overall? I feel wonderful. Wonderful. I haven't felt this good since I think...last October. Eleven months ago.
Ah, you know, you can hear it a million times in your life, "if you've got your health, you've got everything." But for me, that little piece of folky wisdom has never chimed with such profound significance.
The new abx is working on my skin. My skin was bad. The ND wants to keep me on for another month, 300 mgs twice daily, along with 500 mgs of the other abx.
Meantime, he and the big-hitter Lyme literate doctors think that some of the spirochetes are forming cysts in my body, to protect themselves and hide from the antibiotics. So at the end of this month we plan to hit them with a really strong abx.
I've got my reservations about this plan. But I am getting better, so I'm more inclined than ever to go along with it. Because, so far the plan is working.
Nothing feels so sublime as dancing in your living room all by yourself and laughing/crying at your own incredible good fortune.
I'm alive, I'm not in pain, I'm ecstatic. And grateful.
giving thanks for our skin - it covers our whole bodies
I'm pretty tired today, but happy and overall feeling great. Just saw my ND, had to go replace a few empty supplement bottles. In addition to the antibiotics, I'm taking about 20 + vitamin supplements, homeopathic remedies and herbal mixtures a day. Because Lyme attacks the organs of elimination and all the systems of the body, and the antibiotics can be hard on the liver, many of the supplements are necessary to support my natural immune system and my liver, kidney and lymph node functions. Some, such as copper and zinc, vitamins C and E and MSM, help to strengthen the skin that's been struggling with cellulitis since last November.
The homeopathic remedies dermaliquitrophic and ranunculus help with the pain, it's called neuropathy or neuralgia. This is a constant burning pain, and I only have that in one spot, thankfully, on the patch on top of my thigh. My research informs me that neuropathy is caused by nerve damage from the Lyme bacteria. It sends two opposite signals to the brain, one is: I don't have pain, and the other is: I have pain. According to medical researchers, that confuses the spinal cord and the brain, leaving the patient in pain. I've decided to talk to my spinal cord and my brain about this. I know that I can change that pain pattern.
Cod liver oil actually tastes good to me. I take two tablespoons a day. The best part about taking it is that ever since I started, I can tell the difference in my skin. My healthy skin is moist and toned. The compromised skin has been steadily improving for about a week now. Where it was rashy and dark red it is becoming mostly skin color - my skin color. I LOVE MY SKIN!
Say it out loud with me: "I love my skin! Thank you, skin!" (repeat)
In spite of what the ignorant doctor at the community health center told me ("your diet has nothing to do with it"), I also stay away from sugar and refined foods of any kind. I incorporate bitter greens into my daily meals, which stimulate and support healthy liver function, and about 6 days a week I drink these incredibly strong green drinks. I think Evan gets a kick out of watching my expression as I swig down his latest concoctions made from organic kale, celery, cucumbers, parsley and garlic.
Chlorella is an ingredient that most of these dark green foods are high in, and it's a vital addition to any healing diet because it actually rebuilds the cells. And that's what I've been up to, rebuilding, recreating, re-alizing my vibrant health dreams. The naturopath's protocol is working. I'm better every day.
queen of the world
--the enchanted prince, Howl's Moving Castle
It's been frustrating to be on antibiotics for so long. I look at my skin, though, and I'm thrilled. One week ago I still looked like a wreck, embarrassed to go out in public with a short sleeve shirt. Every day brings a big difference. Each morning as I wake up I find myself smiling, anticipating that I'm going to see my skin has turned gorgeous when I open my eyes. And it has.
Ah, vanity: the great motivator.
Clearly the 300mgs of abx daily is making a huge difference in my symptoms. That and my insanely healthy diet. I've got the world's most expensive probiotics to take too, to help me avoid the charming side effects, specifically the one that rhymes with "beast infection."
Can't believe the mess in New Orleans. My heart goes out to everyone dealing with those challenging conditions. It doesn't take a genius to see how we could take care of each other and improve our quality of living with a few simple priority adjustments.
As my disease and my symptoms fade and I feel my energy returning, I can more easily turn my attention to others in need. I do Tonglen meditation, breathe in the bad and breathe out the good, imagine peace and clean running water.
Battling ants in my kitchen. Warm weather and cat food lures them inside. The cats mill around under my feet, worried about their constant source of food.
The Divine Ms. Spark, the fiercest of the three, tracks one single ant as it crawls past her across the floor. I tell them they're fortunate cats that they don't live in New Orleans.
No use being anxious about the future. It hasn't happened yet. And the past is gone. The present is the place to stay, although that's easier said than done when you're in pain. And pain is relative. The abx is helping but my skin isn't completely better yet. I practice breathing in and out, trying to stay in the relative peace of this moment.
Humbled and heartbroken by the stories coming out of New Orleans, I also sense the warning bells going off. We all live as if it couldn't happen here. But we're as vulnerable as the ants milling around on the kitchen counter. I can't even imagine the stress loads on the people of New Orleans. Where will they go? How will they start over? How will they stay healthy in the wet muck of whatever's left of "home" when they do return?
Buddhists say that everything is impermanent. Slowly I breathe in, feel my belly rise, exhale, feel it fall. On the inhalation I envision taking it all in, the flood waters, the dark anxiety, the disbelief.
On the out breath, I imagine clean, dry houses and people at peace and fulfilled. Well-nourished, well-hydrated people, happy and healthy and dancing.
every moment so sweet
are dying with us, we start to have a burning, almost heartbreaking sense
of the fragility and preciousness of each moment
and each being, and from this can grow
a deep, clear, limitless compassion for all beings.”
-- Sogyal Rinpoche
My energy ran down a couple hours ago. I lay on the bed, next to the cat, and placed my ear gently on her fur to hear the rumble. She was so heavily asleep that she didn't even purr. Her stale breath was sweet to me. It's probably a cat-person thing.
While CNN played the song "the City of New Orleans" along with a slide show of the catastrophe that was once a million peoples' daily lives, I couldn't hold back the tears. So many ghosts so close to the living.
Today the sun is out. The dishes are done. Oranges glow like lanterns on the tree outside the door. Curious about what the humans were up to, I was well enough to walk downtown this morning to Greta's Cafe and meet E for tea. The itching on my arms and legs is present and despite the abx there are new small lesions.
But Lyme seems nothing more than just a bad idea today. I have too much living to do.
shifting gears and medical paradigms
"The paradigm of Western medicine and how it views the human body needs a radical shift. It doesn't understand that everything affects the complex balance of your physiology in one way or another for good or ill---everything you eat, everything you do, every thought you think, the company you keep, the music you listen to.
Western medicine doesn't understand that all diseases come from imbalances or that correction of these imbalances causes most chronic illnesses to improve and, sometimes, to be cured.
An integrated system of medicine---one that combines the best technologies of Western medicine with those of ancient holistic systems of medicine---will serve us best." -- Christine Horner, M.D.
One of the reasons I've stopped writing about my symptoms in detail is that I am fervently concentrating on feeling what IS working right in my body, mind and spirit.
As the author of a book I'm reading states, "Don't tell more than five people about your pain. Your brain is listening."
In other words, the repeated phrases get into your brain and become a part of the loop that plays over and over in your mind. Repetitions tend to become reality.
It's the way country music works too, impressing SOD (soap opera drama) into the listener's mind. And the news on television, radio, the Internet. I'm learning about what to let in and what to keep out of my brain and heart. It's a fine line. Being informed and taking action is compassionate and useful. Being saturated and depressed is not.
up and down days
This one is not as up as I wish it were. Tonight, fatigue is setting in early. But the really icky Lyme days are getting fewer and farther between. Got a sweet note in the mail from my wonderful niece and a drawing from one her fabulous little girls. I love kid art. It really helped pick up my spirits. And now there's a big rainbow on my fridge.
I want to say how important it is to me to hear positive stories of people who healed from Lyme. My niece's card included a handwritten note addressed to me, by a woman who got over Lyme. This woman told me she'd sought out a Lyme support group in the early days, but her impression was that it was a “misery-loves-company” situation. She fought Lyme with medicine for four years, then swears she finally kicked it completely with three months of colloidal silver.
In her note she appealed to me to listen to the "experts," but most importantly to remember that above all, the only expert who matters in living in my skin 24/7.
I know. That's what I find so difficult. There is nobody, no doctor, no friend, not even another Lyme sufferer, who can tell you exactly how to heal from Lyme disease. You have to make the most important decisions regarding how best to heal from this devastating disease while your mind is foggy and your short-term memory is shot.
Um, what was I just talking about?
create creative creator
Okay, something cool is going on. I've had another epiphany about creativity and healing. My friend Ginny, an artist, says that not enough people in the world know about the connection between these two things.
I had called her to tell her how much fun I had at my nephew's wedding. I almost couldn't believe it myself, I'd been all wobbly, weepy and weak for the previous five days, then whammo - I got hit with a load of solid love! Hugs all around, and all of a sudden I felt like dancing.
Good thing there was a superb Reggae band - plus, who can feel bad when they're singing "everything is gonna beee alllright" ? Woohoo! How much fun was that? My sisters are so gorgeous and fun, and Cheryl's a kick-ass dancer and great to follow. Everyone was out there - at least all of us "old folk" who obviously don't get out often enough. We couldn't drag ourselves off that floor until the band had zipped up and gone home. And can I tell you how much fun it was to dance with my adorable and brilliant little nieces? And how just being with every beautiful one of my family was a balm to my sagging spirit. Love is the most vital medicine of all.
I woke up smiling the next morning, and the morning after that. But this is the really fun part - even though my sister and I stayed up talking until the wee hours (obviously we need to get together more often) I felt like a million bucks the day after the wedding party. I mean, I slept for practically 24 hours the following day, but I still feel good.
Ginny says the way she thinks about it is that when you're creating, you're with the Creator. It makes a lot of sense to me. All I have to do to continue to heal is to stay creative. That, and take my load of antibiotics and homeopathics. That, and stay in touch with this amazing creative family of mine.
I'm really whipped tonight, but I think that's because it's been a big day, following a long week. So I'm perfectly entitled. I've had icky symptoms, the return of the rash and a hard time talking for about a week. Aside from THAT, Mrs Lincoln, I've been enjoying the show.
I am working full time now. Luckily my freelance work never has to involve phone calling, if I don't want it to. Even though I'm still stammering and slow-talking, my writing skills are intact and my attitude is good. Well, most of the time it's good—sometimes it's great.
New and old rashes on my lower legs popped up over the past week. I worried a bunch over them, especially because there was also more swelling in my ankles. But today it's slightly down, the rash and the swelling.
I'm still on 500 mgs of abx and 300 mgs of another abx, daily. Started the other day adding coconut oil into my diet, and lipase enzymes. I hope to add in the Samento but I tried it a month ago, and it corresponded to this rash I'm having now, so I stopped. I can't imagine setting off another herxheimer reaction.
But I don't think it was the Samento. There's a pattern. A month ago I was also premenstrual, just like now.
Somewhere in the thousands of pages of info that I've plowed through since my diagnosis, I remember reading that Lyme has a 28 day cycle, which, for me, corresponds to my other cycle. Great fun for the whole family.
I think it's a good insight about the cycles, though, because now I know that this is just a temporary setback on my road.
Had a moment of clarity this morning that seemed to last until lunch. At lunch, that familiar drunken wooziness came over me again. And I'm wiped out this evening, but apparently well enough to babble on about it.
What I'm trying to say is, I'm getting better every day. Honest. I have setbacks, and the going is slow, but I'm getting better. The ND told me Friday that I was a walking miracle.
I told him "I told you so," and he had to agree.
I've started including more supplements in my arsenal. A homeopathic blend of copper, gold and silver. More zinc. More vitamin C. And enzymes - lipase enzymes to be specific. Plenty of organic coconut oil. Amazing stuff. I actually love it in my steel cut oatmeal every morning. Mmm.
I'm back at work too, which is another kind of miracle altogether. Since I work at home, it's a convenient, cheap commute and I can wear my jammers, but I get dressed anyway. Sure I do.
The skin is still icky on my legs. It's splotchy and discolored from all the rashes. I'm treating the round lesions topically with an anti-fungal homeopathic remedy, whose first ingredient is "ranunculus bulbosa."
Still drinking strong, fresh green juices every day (well, almost every day). Thank goodness for the local farmer's market, and also thank goodness that I now have the energy to get up and go there on Saturday mornings. I got some wonderful fresh burdock root last weekend and I've been putting that in the juicer with the cukes and celery and kale. Very good blood purifier. The farmer who grows it tells me that he's got people fighting cancer who use the burdock root regularly, and they tell him it's helping to heal them.
The ND says I need to reorder the abx from Costco. I've only got three more days supply. I'm resisting, not just because I hate being on abx, but also because I don't know how to pay for it. But he's right, it has made the difference in my skin.
If only money grew on this tree outside the door, instead of oranges.
wrapping up soon
Occurs to me now that I haven't written anything about being sick for a whole month. I've come a long way from the summer, when writing this story felt like my job -- my only connection to the larger world.
When you're terribly sick, your whole world shrinks down to the constant pain. You don't see outside the veil that's been drawn around you. You focus on getting through the days one minute at a time. Thank goodness I'm not there anymore. As the Buddhists say, I wish for all beings to know the cessation of their suffering.
Nothing compares to the paradise of feeling good after you've gone through hell.
Still have symptoms, for the record. And some days are better than others. But I'm in this period where I'll have 98% clarity in the mornings, as opposed to 30%, which was the case during July, August and most of September. I've been slowly emerging from the brain fog so prevalent with Lyme disease. What a boon. I've been writing again. Can use my thought faculties, and I'm starting to be able to rely on my memory again, I think.
Still dealing with recurring rashes on my left hand, my lower back and shins. It's been over a year. The rashes are not as bad as they used to get, that's for certain. But they're still itchy, painful, and somewhat constant. I do sleep well, and always have, with a few exceptions. I'm fortunate there, and I think my amazingly healthy diet probably helps. Green juices, sprouts, a variety of fresh organic veggies every single day, and all these strong herbs and homeopathic remedies.
The ND mentioned that he still wants me to address the cysts that the Lyme bacteria are hiding in now. He thinks I should take the very strong abx. I don't want to. I'm putting off making this decision. This abx that he's referring to is, from my understanding, potent and toxic. It will definitely cause a flareup of symptoms.
Now that I know what it feels like to not be in pain every moment, I am sure as hell not excited about taking it. Besides, I read that even with this particular abx, people have experienced a return of their illness. I am on a healing path that is right for me. I want to stay on it.
The best thing the ND said last week: "We want to test you again and then talk about wrapping up."
That makes me smile.
You know you're getting better when it doesn't even occur to you to write about how sick you are.
AHhhhhh! That was a big deep breath. If you're reading this, bless your heart. Take a big breath and relax. There is healing going on in the world. Every moment. Sometimes that just has to be enough, just knowing that.
I was lying in bed this morning thinking back to the summer, when every night I'd cry myself to sleep from the pain in my nerves, my skin, every square inch of my flesh that hurt so badly.
I remember thinking then that if someone could just tell me when this would end, when I wouldn't be in pain every single second of the day and night, that I could make it. All of the symptoms, the whole entire orchestra of torture that was my body, would be bearable, if only I could know with certainty that they would end someday.
Here we are, at the winter solstice. If I had known at the summer solstice, six months ago, that I'd be out of pain and distress, feeling human again by the winter solstice, maybe I'd have been relieved. I don't know. It might have sounded like a hell of a long time away.
Oh but right now, who cares! I ended my main abx the other day, after 5+ months. And the day after tomorrow I'll run out of the other one. I started taking Samento yesterday, just one drop per day. My doc says he'd have preferred if I'd have gotten tested (for remaining Lyme bacteria) before I stopped the abx. But to tell you the truth I just can't wait to get off them. I realize they probably saved my ass. But I'm so sick of being on them now, and so happy to get off of them, because now my own gorgeous devoted immune system can kick into gear.
Still drinking chlorella drinks, lots of green juices, wheatgrass, fresh burdock, cod liver oil, and so many other fresh veggies I could list them for an hour.
The skin on my legs is baby soft, resilient, and it even has a lovely shine. This, in itself, is a pure miracle, considering that my legs were hamburger for half the year. I am still getting bits of itchiness here and there.
The ND recommends painting a homeopathic blend on these spots, because we're pretty sure they're a sign of one of Lyme's co-infections. Like a fungus, probably. I'm taking lots of strong anti-fungal stuff, like organic garlic capsules, a tincture of oregano oil, and Pyloricin, which is some heinous herbal capsule blend of artemesia, ginger, oregano and garlic. I am kicking fungal ass here.
notes from 4 am
Actually, it is 10:30 am, but this is the wacko stuff that was going on in my mind at four.
I slept the 'split shift' as my mom calls it. The split shift is when you wake up halfway through the night, then fall asleep 3 or 4 hours later and sleep till late morning.
I usually sleep well, which as Dr. Saint Patricia tells me is phenomenally an anomaly. I'm unusual for a Lyme patient. She has said that insomnia is the worst part of Lyme disease. So I count myself lucky, most of the time. About once a week or so I have the split shift.
My sister tells me that I should start toning a 'C' and that'll help balance my thyroid. She's into the voice healing connection, and it makes a lot of sense to me. The thing that woke me up last night was a dull throbbing pain, at the base of my throat on the left side. It's still there. I told my sister I would start right away, yesterday, then promptly forgot about it when I hung up the phone. I remembered it when I woke up at four.
I haven't had that bad of fuzzy of a mind lately, but some things just go in one ear and slip out the other without so much as a hello.
Ginny laughed when I told her that. "That's the real reason why women over the age of 50 don't have babies," she said. "They'd set 'em down and not remember where they put 'em!"
I promise I'll try singing a C today. My sister says to do it for 30 minutes. I'm not doing it yet, as I've noticed. I'll do it though.
The thing is, I don't have many symptoms lately. I have some annoying ones that hang on, like these little teeny itchy warty-blisters that popped up the other day on my fingers. And a couple times a month I'll have days when I wake up exhausted, and just do the best I can dragging my sorry butt through it. But most of the time I'm doing pretty well.
I've been strenuously, spiritually, and absolutely dedicated to getting well, eating right, exercising and working. I find myself saying to people, I had Lyme. Had it. Past tense.
One woman, who I was being introduced to, looked at me in wonder when I said I had had Lyme but that I was now healing from it.
Her eyes grew wide. "You mean they can do something about that now?"
I wanted to say, but I didn't, “who do you mean 'they,' woman?” They is me. Nobody cares more about your body and your health than you do. No doctor, no nutritionist, no professional nowhere, no way, no matter how great they are, lives inside your skin.
I think it's up to us, each and every one of us, to acknowledge our own magnificent, miraculous body-mind-spirit connection. Not just acknowledge it, but take action because of it. Especially when you've been told you “have” something, like an illness or a condition.
I'm not giving away my body's own healing power. I'm not waiting until someone else does something for me. I'm taking charge of creating the conditions for my body to heal itself. “They” is us.
put fun all over your calendar
My brother was diagnosed with Hepatitis C and arthritis. This morning I asked him how he was feeling. I haven't heard him talk about his symptoms lately.
When he talks about his softball league though, his blue eyes sparkle like sun on the sea. He tells me that nothing in life—nothing—makes him feel as good as softball.
The doctor told him his viral loads for Hep C are looking good. But he suggests that my brother's got to start thinking about switching sports, something that's not so tough on his ankles, like swimming or biking.
Brad won't hear of it. “Those aren't sports, man!”
He tells me about the $200 Miken Ultra 2 softball bat, which, as he puts it, is his new habit. This is the ultimate ankle-saving bat, because with it he can send a softball over a 300 foot fence with regularity. Then you get to jog around the bases, nice and easy.
But his Hep C is undetable? I'm impressed. “What accounts for that?”
He lowers his voice a little. “This might sound stupid, but I think it's because I've got fun written all over my calendar. Something to look forward to.”
The Miken Ultra 2 bat is his new heroin, he chuckles. “I bought one last week for the new season, went out and must've hit it 700 times. I broke it, instead of breaking it in.”
It doesn't sound stupid to me. It's smart. It makes me think about my dreams for the future and plan for health and happiness. My brother doesn't have Hep C written on his calendar, he's got a year's worth of softball games there that are going to make him happier than anything else in life.
“What would you put on your calendar if you could put anything on it, anything you love to do,” he asks me. It's a great question. I'm going to think about it.
A little toast:
(raise your glass)
Here's to making future plans.