consummate actress on a morphine drip

This post is written in gratitude to Jona from the boat, whose kindness is epic. And to Third Eye Blind.

What a tight rope walk it has been.

Inside a cafe in Decatur, Georgia, David and I find ourselves across a table from his brother, Jeffery, and our sister-in-law, Ariyele. No stranger to our odd little planet, Ariyele has been fighting chronic and autoimmune disease, chronic lyme included, for the past ten years. Jeffery by her side. When they ask how we're doing, they know the magnitude of such a seemingly simple inquiry.

Outside in the square, the day is scorchingly hot, the sun so bright that I can barely think beyond its brilliance. The cafe is a cool refuge, although I cannot resist ordering an almond croissant with my peach blossom tea iced tea. David gives me a quizzical look, opens his mouth to say something, and then stops.

I try and explain to Jeffery and Ariyele, who already understand, what a mixed bag it's been; all the ways that this past year of sickness has made us stronger, more empathetic. What a teacher it's been and how it unveiled what it is I want to do with my life, which is ( in its boiled down form) to learn everything about Lyme and then help everyone who has been infected. Abruptly, David excuses himself to use the bathroom.

Later on, driving North through the shimmer of heat that hangs over the green stripes of South Carolina Farmland, David says to me, "Lyme is pure evil. There is nothing good about it. Nothing."

You are right, my darling.

And so am I.

We lose each other almost daily.

To survive the daily sacrifices, limitations and sadness of living with someone who has been infected with Chronic Lyme, to say nothing of the financial burden and the stress of stretching one income to cover the cost of three: the two of you and the illness, which is always hungry, always demanding, never cheap, with unending reservoirs of patience, empathy and resolve would be possible only for a saint. Last time I checked saints are not real, they exist only in storybooks and statues.

To survive the daily indignities, dissolving identity and ever-changing blueprint of Lyme's greedy and ubiquitously painful claims on your brain, spirit, hemoglobin, heart, eyeballs, throat, stomach, voice, sense of balance and well being and the skin of fear and confusion that encompasses everything like an eggshell without becoming, on occasion, a maddening, wheedling, whining, angry, incoherent bore, a complete drain on resources in every sense of the word, would only be feasible for a saint, or a mannequin or a consummate actress on a morphine drip.

And would you believe it, nobody will give me morphine.

We slid off Compression Falls the other day in Tennessee. It was smooth ten foot rock slide over the lip into a twenty foot free fall, with just enough time to bicycle your feet like the coyote that moment he looks down and realizes the earth has vanished beneath him, and then you hit the aerated pool at the bottom in a remarkably soft landing. Then we spent the afternoon diving as deep as we could go and swimming along the river bottom, in a world that is decadently cold, dark and silent.

Our friend Charles has a farm not far from the waterfall and that's where camped out for the night. When we find each other again, it's usually in places like this, a couple of hours away from the house and its buckets of medicines, stacks of books by Buhner, Cowden, Horowitz, all of the bedding stained with bright patches of yellow from a Chinese tea that I soak in rags and lay across my eyes, the constant reminders.

On such evenings I like to sit beside the campfire in between David's legs and pull his arms around me as tight as possible. I call him my Hug Contraption. We watch rainclouds gather and break open over Roan mountain in the distance, and later, he'll wake me up to see heat lightning quietly brighten the sky with flashes of violet.

Very slowly, so slowly I'm not even sure if David is entirely aware, our outings are getting longer, becoming more involved. The other day we went for a mountain bike ride. Then an evening paddle boarding trip-

in the same day.

(Unfortunately the dog fell in, and consequently contracted pink eye.)  I survived three hours of Atlanta traffic behind the wheel without batting an eye, how many people can say that? Instead of going straight home after a night of camping last week, I lasted well into the next afternoon by falling asleep in a hammock. That may not sound like much but it is much. 

Sometimes I measure my progress in the amount of baths taken. This past spring essentially amounted to a three month long soak. Talk about pruning. Lately I find myself going for days without resorting to the tub. Victory!

I still need to sleep a lot. I vomit more than would be considered desirable, that's really the only way to put it. My eyeballs pulse with a stubborn pain that will not seem to leave me alone despite direct order and gentle coaxing and Tramadol.

I breathe very hard these days, as if I've just run a mile (ha! as if!) my chest feels as if its caving in and my heart thinks it's an animal that needs to pound its way out of my rib cage, but as we have come to learn, just like the fevers which still glide me every now and then into a filmy and secret world, these things too are to be celebrated. All of the Mepron, Omnicef, Minocycline, Septra, Cipro, Wormwood, Enula, Xylitol, Coaratem and Lactofernin from the past twelve weeks of the Lyme Biofilm and Babesia Protocol Part B is peeling off the infections layer by despicable layer and the Babesia infection is finally dying off, and making a big fuss as it goes.

Go on, little protazoa, pitch a fit, enjoy your funeral! You don't scare me anymore.

Life right now is so pretty and so ugly and so pretty and so ugly and so pretty and so ugly.

To help me afford my regiment of effective and unbelievably expensive medications, which are not covered by insurance, 

click here to learn more.

Relapsing Remitting

You can catch up here, if you need to.

Thank you letters and tokens of gratitude

are sailing through the postal service with more to come. I am giving each letter the time and attention it deserves. I am very well organized. Thank you for your patience. 

written in gratitude for Aimee and Sharon 

Five months into treatment, I develop a fever. It comes and goes; some nights I'll wake up burning and drenched in sweat and by the morning I'll be perfectly fine. Other times I'll be walking through a field, running my hand against the tops of the tall grass and it strikes me, the air becomes suddenly thick, the earth beneath me tilts. 

One particularly humid night it finds me on the dance floor of an outdoor wedding, spinning and energized. I push through the crowd, wobble past the cake table and the DJ and the long, long path through a meadow until I'm safely in my car with the motor on (guiltily) breathing refrigerated air as I slip backwards into the glossy back alleys of my consciousness.

My doctor tells me that this is as encouraging a sign as I could hope for at this point in my treatment. A relapsing remitting fever and flu-like symptoms (essentially, the flu) could be a herxeimer reaction from the Babesia, a protozoan that infects my red blood cells and steals my oxygen from the inside. This would mean that we have defeated enough of the Borrelia (the lyme causing agent) for this particular co-infection to finally emerge from hiding, and we are successfully destroying it. 

I love my fevers. They make me feel powerful, mystical even, like I exist between this world and the dreamy, filmy world that I slip into when they hit. I have been infected with Lyme for ten years, tortured by Lyme for one full year, and this is the first sign that my body has noticed something is wrong, that it's starting fighting back. 

The six week on-agan-off-again flu steals my appetite. I've lost twenty pounds since I was diagnosed and now I lose a few more. I am prescribed Marinol to increase my appetite. I never dreamed there would be a day in my so far ravenous life that I would have to swallow a tiny little ball so that I'd want to eat. David starts making me these blended monstrosities and sitting across from me as I sip them, his arms crossed, foot tapping against the linoleum. 

I feel more powerful every day. It doesn't matter that I'm not hungry and that sometimes it feels very much like I am drowning on dry land, and I can say that for certain because I nearly drowned once. I become out of breath with this intense pressure in my face and I cannot speak more than two words at a time. It's a particularly venomous Babesia symptom known as Air Hunger. Nevertheless, something has switched inside of me, something only I can detect. It may not be visible to the outside world yet but inside my own dreamy fever world, I can feel it. I am no longer defeated by Lyme. I'm winning. The symptoms come and go and I observe them, but I am not attached to them. I don't cower in fear the way I used to. 

One afternoon, at a bakery in Vermont with my mom and my uncle, I'm trying to tell a story about something that happened to me in Burlington the day before. I breathe in short gasps, one word per breath, and I'm stabbing my sternum with two fingers, hard- some habit I've picked up that helps me cope with air hunger. My other arm, without me noticing, is flapping against my side, the heal of my hand beating my left leg. (Sometimes, when a limb goes numb or tingling, I find it helps to hit it over as if to prove to myself that it's still there.) 

So I'm stabbing myself between the ribs and flapping my arm and trying to tell this story between gasps and I don't even notice any of it anymore. But my uncle is looking at my mother and my mother is looking at me with this expression of horror, and then she reaches out and holds onto the arm that is beating my leg and she says, "Let's not do that here, honey." 

I freeze. "Sorry." I say. 

"Why don't we go home now," she says gently, standing up and gathering her belongings. 

this is mom

My doctor tells me to buy a pulse oximeter to wear on my finger when the drowning begins. "Try to stay above 95%, ok?" She writes. 

"What do I do if it goes below that?" 

"ER." 

I keep the device in my glove compartment. Sometimes I wear it at night, mostly out of curiosity. I watch the numbers flicker up and down.  I smile to myself. It's a game to me now, the killing. Lyme hates oxygen so I take huge deep breaths, watching the monitor. I fall asleep inventing a video game in my head: Borrelia Hunter. The Spirochete Slasher. See how many ways you can kill it without killing yourself in the process.  

Still, despite all of this, David and I have a remarkably normal trip back to Vermont. We swim every single day, driving up and down the spine of the Green Mountains in search of swimming holes. The cold water acts as a full-body anti inflammatory; it slows my heart-rate, reduces the vice grip on my chest and resets my breathing. We dive into waterfalls, disappear into potholes beneath the current and swim through storms of hard, warm rain. On our one year anniversary, we take a boat ride on Lake Champlain. "To a wonderful year," we toast. "Actually a fucking terrible year." And then we both break down laughing. 

It's done now. That first year is behind us. Finally, we can refer to it as in the past. 

The passing of time means nothing to an invasive, hole-drilling bacteria, but it means something to us. 

Is it over? 

Can we breathe now?

Our trips become longer and longer as I get stronger. We drive with the windows down and stop along the way to buy sandwiches and iced coffee. I travel with instant ice packs that will pop open with a squeeze just in case I need them. It's no bother at all. Two days pass in which I take no prescription pain medicine, then three.  

My aunt and uncle up the road have a small cedar sauna built into the corner of their basement, and every evening David and I sit and swelter until we can't take it any more, and then we run down the road and plunge into the pond. We swim after dinner and before bed. I lie on my bed in the afternoon and listen to my mother playing piano in the living room, my uncle playing the oboe upstairs. 

One day, I feel so confident that I leave the house for an overnight, my first in a very long time. I meet up with my friend Elissa in Burlington, and we walk all over town and down along the waterfront. We talk about the apocalypse and our old friend who fell off the Quechee Gorge and lived. "I'm not sure if he fell," she explains, "or if he sort of bounced."

More than anyone else in my life, Liss is able to help me transform the trauma of this past year into something that feels powerfully human. She listens when I tell her about grief and pain and everything this year has taken from us and instead of sympathy I detect a sense of admiration. Like she's proud of me. She watches these pieces of me fall out, instinctual and vulnerable and messy, and then it's as if she reaches out and lifts them away from me, crushing them inside of her fist and the opening her hand to reveal a palmful of diamonds. 

We eat dinner out, watch River Whyless play at Common Grounds. She teaches me how to make an infusion of daisies and red clover. I sleep on her couch beneath a weighted blanket she's sewn herself - "don't ever try and sew one of these, they'll make you want to kill yourself" - and I wake up at 6:30 am to her toddler running in circles through the living room. She makes me a bracelet of Baltic Amber to help with the pain, and every day there is less of it. 

I felt so normal after that trip to Burlington.  And normal doesn't mean normal anymore, it's something way better.  

Imagine every time you walk you feel like you're floating. Every time you're able to run an errand it feels too good to be true. You spend a night away from the safety of your own home and you feel as proud of yourself as if you had summited Everest. 

That's what I've been doing. Getting stronger and stronger and higher and higher until some days I'm floating on the ceiling, all by myself, just enjoying the very fact that I am still alive.  

Shine Light on Lyme : The Event

just a few of the businesses participating in the raffle and silent auction!  

I am so excited to meet many of you this upcoming Sunday at the Shine Light on Lyme Benefit and Gala!

The festivities will be held on July 10th, from 2-5pm at Urban Orchards Cider House in our fine neighborhood of West Asheville.

Trader Joes is providing free food and Urban Orchards has plenty of delicious, house-made cider on tap as well as plenty of good Carolina beer and a full menu of local bites.

I'll be giving a very brief talk at 3pm just to discuss the purpose of this event : simply put, to connect those who need to be connected. Lyme warriors with other Lyme warriors, healers with those who need healing, friends and families of patients with chronic illness who need support and connection themselves. It is HARD to be a support person, to be an ally, a friend, partner, parent, of someone who is suffering. It takes a saint-like level of selflessness and patience. They need recognition as well, as well as some kick-ass raffle prizes.

I have not had to suffer in silence because of a combination of luck and resourcefulness, and now I want to share both of those things with others. Nobody should have to go through this feeling as if they are alone. We are anything but alone. We just need to find one another- hopefully on Sunday, on the sunny lawn of Urban Orchards with hammocks and drinks and food and prizes.

Everyone is invited to this event! No RSVP needed and there is no charge to attend. The raffle is STACKED! Art, photography, adventure packages, gift certificates to restaurants, breweries, juice bars, raw food cafes, health clubs, acupuncture, barber shops...there will even be a mobile clothing boutique on site!

Sunday will be uplifting, refreshing, helpful, honest, and fun. I cannot wait. And for those blog readers who I know will be attending (you know who you are...).....I am counting down the minutes till I can finally give y'all the hugs you deserve!

Any questions, please let me know. We are still warmly welcoming any additions to the event and the raffle / silent auction, so please let me know if you or your company would like to be involved. I am working with small businesses, artists and makers to help them get some great exposure and marketing as a thank you. A portion of the funds is going directly to the Lyme Light Foundation, which helps young adults and children afford facing Lyme and co-infections afford their treatment.

Together, we can transform this painful, mysterious, and frustrating health crisis into something worthy, something illuminating, lovely, a piece of our lives that brings us together instead of driving us apart, uplifts us instead of crippling us. A huge thank you to all of the local businesses who stand in solidarity with us that Lyme disease needs more recognition, awareness and acknowledgement! SEE YOU SUNDAY!!

Treasure

this post is written in gratitude to Linda Sharps, whose bravery inspires me daily

- You can catch up here, if you need to - 

I'm beginning to feel different than everyone. Not lonely, but apart. There has been this aesthetic trend in the past year or so, you see it on social media mostly, to display a life that appears dainty and muted, every tiny detail presented in a manner that is off-handed yet quasi-sacred, rustic but always so very dainty. It seems as if there are whole armies out there of slightly more lackluster Gwenyth Paltrows, faces covered by the oversized brim of a sunhat, eating a tiny meal at a long white table decorated with neatly folded linens, populated by a dozen or so beautiful if slightly wan looking thirty-somethings.

From the looks of it, their sweet and effortless lives involve plucking a single daisy and poking its long, slender stem into a milk-glass bottle, wrapping babies origami-style in swathes of fabric, catching on film a single chip of rainbow light, cast from a twirling prism, as it journeys across a vast white wall, re-wrapping the babies, perhaps a single leek for lunch, or a lilac-tinted endive clutched in a child's small and earnest fist, extended and photographed against the same ocean-wide white wall.

I'm envious. 

I'm envious because I can't even stage that kind of existence, much less live it day in and day out, and it seems so very tempting. Even with its all its irritating qualities, it's faux-humble gentility, it still manages to somehow appeal to me. How pretty and soothing; how far from my grasp. 

Everything in my life right now is so vivid. That's the only way I can think to describe it. I woke up a few nights ago with a bright red eye, a yellowish, blood-tinged tear slowly oozing down the side of my nose. You hardly even notice these things anymore. The cystitis has returned with a vengeance; I sleep with an ice pack between my legs. It's hard to appear dainty when you sleep with an ice pack between your legs.

We drove to Vermont a few days ago, stopping for the night at motel outside of Harrisburg whose blinking neon sign was barely ten yards away from the shoulder of I-81. For the first time in my life, I fell asleep in the bathtub. The next morning as we rolled North the landscape grew brighter and brighter, until by the time we arrived at my parents' house the world appeared as if in technicolor, ebullient and buzzing with insects, croaking with frogs, the sky blue and marbled with traces of thin white clouds. The peonies in the garden were fat explosions of magenta, their stalks bowing under the weight of their incredible feathery heft. The fields surrounded the roads and houses in a haze of tall, citrus-hued grasses.

 David and I spent the first few days in New England constantly seeking out water. Swimming has become an absolute joy, an escape from ubiquitous pain and the only time when my heart doesn't thump against my chest like an angry rabbit. When my vision softens and fades around the edges I look for a body of water in which to dunk my head, open my eyes beneath the surface and enjoy a world that's always blurry and cool.

When I'm fully immersed in fresh, living water, the weightlessness and ecstasy of the experience overcomes me and I'm flooded with intense feelings of coziness and contentment and goodwill. The feeling of pulling myself out of the cold, clear water of the quarry and pressing my body against a slab of sun-warmed granite on my stomach is better than opioids. Swimming is a temporary cure but it is a cure nonetheless.

 We've swam in the clear blue hole beneath the iron bridge in downtown Woodstock, where the perfectly manicured lawns slope down to meet the river, and every now and then a figure will pause on the bridge below us, wave and point a camera. We've floated around Silver lake on two air-filled tires, dipped below the pollen that dusts the surface of the pond like powdered gold, jumped off the shattered shale on the steep banks of the Quechee Gorge into the icy, dark green river.

Maybe on day soon, I will have my slender daisy in the milk-glass, a quality of airy cleanliness that follows me like a soft mist, a life free and clear of the

small, perpetual horrors of Lyme disease. 

For now there is the crush of pain against relief, bright and rough, the cold shock of river water that swallows and protects me from the burning day and the treasured moments of joy and calm that blink like fireflies against a black summer sky. My life is filled with mess, filled with uncertainty, full of treasure. 

From Lyme to Emerald


I want to give you a glimpse into the financial crush of treating Lyme and its Co-infections (Anaplasmosis, Bartonella, Babesia.) A good writer shows, not tells. 

The figure below shows the cost of the loathed anti-viral Mepron, you know, the one I complain about all the time- the foamy yellow liquid that comes up as often as it goes down.  I go through a 750 ml bottle about every 1.5 months. The bottle costs around $3,000, which means every time I throw up a teaspoon, it costs me around $100. That's some serious incentive to swallow. 


Insurance has paid a good portion of this medication until now. It's arbitrarily decided it is done with the Mepron. Oh, Blue Cross Blue Shield of North Carolina, I wish I was done with it, too. 

I would like everyone who has donated to my medical expenses or shared my blog online (a huge help) to see a concrete example of what Lyme patients are up against, and how you are helping to afford the treatment that is saving my life. Yes, Lyme does kill people. It works its way into the heart and it kills. I have a tendency to be hyperbolic but when I say that you're saving my life, I mean it. And many of you have never met me outside of the internet : I think you are especially astounding. 


Here is something I wanted to share today. My hometown of Woodstock, Vermont, led by an incredible woman named Leanne Velky who went to elementary school with me, has created a raffle (and created that lovely event banner) to help me afford the exorbitant cost of treatment. You can check out the items and buy tickets here. 

The enormous, life-altering swell of gratitude that I feel towards everyone involved: Leanne, Woodstock, Simon Pearce Glass, the massage therapists, the creator of those beautiful sea glass and pearl pendants and everyone who has donated to help me fight this monster of an illness....that is a different post for a different day. Some of it is private and belongs only inside the thank you cards that I am writing out every single day. 

I don't want to be an astronaut on the moon anymore. I want to go home and not feel sick all the time. I want my eyes to clear up and my hands to stop shaking and my pulse to stop bounding and this fever to be gone. I want to wake up and not be scared. I want to give David a break from this because he needs one. I want to be healthy enough to have a baby one day, and not be wracked with fear that she will be born with Borrellia already drilling holes inside of her. 

For now, I am going to swallow my morning's worth of the killing regiment: Mepron, Omnicef, Septra, Enula, Lactofernin, Artimisinin and Xylitol, and keep hoping. 

Fun Friday Flipout #3

Welcome to the third edition of Fun Friday Flipout. This is the time each week where we all just get to relax, enjoy ourselves, and examine the brighter side of things.

Last week wasn't so bright, so we didn't flip out on Friday. But today is a very good day, one of the best I've had in a long while. Let me tell you why.

I was getting my blood drawn this morning for my safety labs when I received an email from a girl here in Asheville who also has chronic Lyme. She said a friend of a friend had told her about me and would I like to get together for a dairy-free, sugar-free, wheat-free, soy-free something or other and talk?

I texted her immediately: "Yes. Now. Immediately."

Half an hour later we were sitting inside the cool brick and copper of Trade and Lore Coffee House, gauzy white wallhangings lifting in the breeze from the ceiling fans, drinking almond milk lattes and talking about everything. We share many of the same symptoms, swallow the same supplements, and even adhere to a similar antibiotic regiment. Besides part time writing and side gigs, we're both too sick to work and we spend every moment of every day trying to find a way out of this.

She is beautiful, capable, funny and optimistic. We both hope to become health coaches one day and help others navigate their way through chronic Lyme, and so we devour books, attend conferences and absorb as much information as we can about this monster that has invaded our organs and stolen our lives. We are both success stories in the making.

As I spoke with her, I felt a little of the terror that still clings to me after this past year melt away. We spoke the same language: anaplasmosis, air hunger, anger, babesia, borrelia meningitis, confusion, costochondritis, doxy, dismissal, eye twitch, fatigue, liver enzymes, optic neuritis, port lines, pulsed ABX, safety labs, uveitis. I felt instantly connected and less crazy.

Together we planned a summer filled with bite-sized excursions: paddleboarding, yoga, lying around, juicing, gardening, podcasts, hikes that are either short and sweet or long and slow, walking the dogs.

We're not sure who connected us, somebody told her friend about my blog and I don't know who it was, but thank you. Whoever you are.

There were other nice things this week, like cotton candy grapes, minted ice cubes, cold glasses of juiced collard greens, my red haired husband yanking ruby red beets from out of our garden, vegan peanut butter ice cream, an old friend who sent me a piece of sanded burl in the mail that is so unearthly beautiful that I cannot stop touching it, our friend Dan playing an acoustic set at the Mothlight and piles of thank you cards all neat inside their white envelopes and ready to go, but what I'll always remember from this week was meeting Whitney.

Imagine you live half your life quietly alone on the moon, sifting through moondust, searching for a way back to earth. You are coping but you're very lonely and you're afraid you might be losing your mind. And then suddenly a spaceship lands and another little astronaut emerges. "I'd like to get back to earth, too," they say. "Let's figure this out together."

Imagine. Just imagine what a difference that would make.

Spiral

This one is for Ashley and Dan, in gratitude. Dave and I love you both.

(You can catch up here, if you need to.)

It's a small thing, a scheduling error, but it leaves me crying over the sink, rotating the sponge in circles on the plate like a record player. I am a record player, my chip of diamond catching in the groove and repeating, repeating, repeating.

We do something wrong, my husband and I, we forget about a work obligation and so we have to cancel the weekend plans. It is nothing, nothing out of the ordinary, but just enough to splinter the thin exterior gloss that we skate on every day, and we fall through. For a moment we are suspended in that bleak space below the surface, acutely aware that since we cancelled the weekend plans, it means I will have been almost completely homebound for three weeks. David has done nothing but go to work and come home and I have done nothing but the dishes, the dog's daily walk, the shuffle of pills from orange bottles to plastic squares to my own throat, morning and night, a glass of water. Repeat. Repeat. Repeat.

This below-surface world is darker than the one we have tried our best occupy for the past year, and cloudier. On the surface we are bright and buoyant, we speak of this disease in terms of the lessons we've learned and the gifts we have received, both of which ripple through the landscape like thin veins of sparkling gold yet still this place is one we would both leave behind in an instant, given the chance. We discuss the future as if the cure is not just inevitable but close, out of eyesight but certainly, so close. We have come so far, we have made such progress and that keeps us afloat- doesn't it? Haven't we?

We have come to understand, by now, that things are decidedly more complicated than we thought they would be. We like to tell ourselves that we are moving forward, a slow yet gradual climb but really, time inches forward in a tedious spiral. We move in these slow circles and after completing each rotation we get a little bit further from where we started, yes- progress!- and yet our life is still composed of circles. Over time, the looping makes us feel a little bit insane.

We shuffle our schedule, I hang up the phone, mark the calendar, and then lock the doors to the house. Alone, I return to the sink and start to cry, my voice high and sing-songy.

I consider kicking the cabinets but decide against it. The tears dripping down my face feel almost indescribably soothing to my eyes, which are swollen and infected by Bartonella, Cat-Scratch Fever. Tears are probably the best thing for me right now. How funny. Maybe crying is the medicine I need- not in some trapped-bird release metaphor but in terms of chemistry. And these days, I'm much more invested in the chemistry of recovery than in anything less tangible.

I am not in remission. I have a good week but then I catch a virus, just a little virus with a fever and swollen glands, how quaint. But while I wait for it to pass I have to pause my other medication and that is the very last thing I want to do. I do not want to stop this train, I want to run it off of the cliff and be done with it.

While we wait, we baby my liver with Milk Thistle and Glutathione. We're keeping close tabs on my liver with CBCs, but my eyeballs remain stubbornly bloodshot and opaque. What is it, the Bartonella, or the medication that we use to combat the Bartonella? Do we tiptoe backwards, carefully and apologetically or do we keep plunging ahead? That's not a question I'm asking you to answer. I just need you to know the type of thought that consumes me on the days when you don't hear from me. Please try and trust my team of doctors. Please try and understand how tricky this is.

I have spent long hours in the past few months embarrassed that my life has shrunk down to the size of a city block. How paper thin my excursions have become, how witheringly repetitive I must sound. But then I'll drink a cup of coffee and stumble down the road with the dog in a caffeinated haze, perky and taking pictures of clouds, and I'll return home with some five-cent profundity about what a meaningful thing it is to live so close to home. 'I look deeper now,' I'll chirp. 'Not further- deeper!'

But that's not real. Not to me. It is cheap for me to say that because that is not how I feel.

But here is the one thing that I have realized: it does not matter how I feel about my circumstances. Whether or not I feel satisfied by what constitutes my days- it does not matter because I am not entitled to anything more. I did not move willingly from the world of the healthy to the world of the sick, but then again, nobody does. Any moment of grace or joy that I find here is treasure, and I have found more of that than most people because I have been absurdly, obscenely lucky.

I thought I was owed more. My life until now has been so clear and carefree that it was easy to imagine that it would all continue to roll forward like that. I thought I was entitled to so many things, my health included, simply because I wanted them. But I was wrong. Thank god I'm finally beginning to understand that.

If you're interested in helping me get better, 

here is how, here is why, and here is how I'm going to say thank you.

I've decided that today I am going into remission

I have decided that today I am going into remission. 

That means that this is the last time you're going to see what Lyme Disease- no, wait- what Multi Systemic Infectious Disease Syndrome (that's what we're calling it now) looks like. At least in my life. 

It's been a terror and a mess.

It's a bore and I'm done with it. A cure, as in the complete eradication of the disease-causing agent, feels so complex and improbable that right now I will settle for remission. I mean, think about it, we're attacking this thing over and over and over- it's bacterial, it's fungal, it's viral, it's a parasite- in order to achieve the cure and yet nobody knows for certain if a cure is even possible. 

But I'm starting to feel better now, I'm starting to feel as if I'm inching towards remission. So maybe that's what I've been after all along- reaching the point where I can coexist with this thing. Forever. Maintenance and monitoring and medicine for the rest of my life. Or until they come up with something better. 

Anyway, here is what it looked like on a bad day. Here it is even though I don't want you to see it, exactly. I just don't want to forget it. This is important for me to remember. 

Fun Friday Flip Out #2

First, some business: If you're just joining us, would you like to read my Lyme story from the beginning? Catch up a bit by clicking here.

If you'd like to listen, I recorded an episode with The Dirbag Diaries. Click here to listen to The Miracle of Darkness. 

Now. On with the story.
A huge thank you to Brenna Hersey. Check your mailbox girlfriend!
Hello and welcome to the second Fun Friday Flip Out here on the Wilder Coast. So what if it's Saturday? I was not feeling too well yesterday, but today is A-Ok, so let's just go with it. Fun Friday is a time to relax, enjoy ourselves and focus on the good things.

It's one thing for me to want to give an accurate portrayal of life with a space-age, misunderstood, hotly-contested, often debilitating and fascinatingly complex disease, but I'd rather not do that at the expense of all the color and contentment in my life, because how long is this thing going to drag on? I have no idea. Maybe I just have to get used to living like this. Good days and bad days. Here are some of the good days. And remember, on these posts I get to loosen up and write just like we were chatting at a cafe.

David, the dog and I went hiking at Mt. Mitchell State Park. Mitchell is the tallest mountain East of the Mississippi, can you believe that? I would have put my money on Mt. Washington, and I would have lost my money. The views up there are heavenly and slightly overwhelming. The wind was blowing and I walked to the edge of every cliff and peered over, I have absolutely no fear of heights. David has a fear of me walking next to cliffs, however, because my balance is not everything it should be at the moment. I miss climbing a whole lot. I can't wait until the day I'm better enough to climb again. Better enough- that should be my new goal. 

Most of the time, Lyme symptoms keeps me tethered to my neighborhood. I'm living very locally these days. I consider small outings to be great adventures. This week, Kelli and I ventured over to Villagers, the urban homesteading shop down the street, so she could buy a new cactus. I didn't like her cactus because it bit my finger, but she found it just delightful.

 I pay much closer to very small things. I'm getting to know the immediate world around me in great detail. 

Molly and Yonton took me to a brand new cafe by their house. It's gleaming and gorgeous inside and it made me miss Seattle for a moment. It was a brilliant day, clear and nearly 90 degrees, so we sat inside under a fan and drank iced coffee. Then we walked back to their house on a street I've never been on, stopping to examine gardens filled with poppies and azaleas, colorful walls and vines growing on fences. 

It's wonderful to have friends who don't mind taking the smallest excursions with you.
There's a nasty man lose in the wilderness right now. He tied a woman to a tree up at Craggy Gardens and almost beat the life out of her, but she lived. He's been spotted a few times but not caught, so everyone is advised not to hike alone- not even in the local parks like Bent Creek or Richmond Hill. The poor dog is getting sick of trotting on pavement as we wait for this guy to be removed. A few days ago, Steffi and I went to Bent Creek together and ate strawberries as Hometeam took a grateful dip in the water. 

Although, I am not supposed to eat any fruit. Too sweet. Can you believe that? What a bother.

Abby and Ella from Tera Preta Farms brought over a huge box of greens. They were off to Cincinnati for the weekend to see Abby's parents and they had a surplus of collards and enormous kale, bigger than the ears of an elephant, so they brought them to me. We sat on the back porch for a little while and drank cucumber spritzers and caught up until my eyes stopped tracking. When my eyes stop tracking I have to go lie down and lie black stones on my eyes, like some sort of old-school Egyptian corpse. That's me! I didn't think I could get through that jungle of greens all by myself but I did- I pulled up a stool next to my juicer and for two days straight, pausing only to sleep and use the bathroom- which, as one could imagine, was more than a few times- and juiced everything and then drank it. That's really all I did for two days. Now I feel like a superhero.  

David and I went to our friends Laura and Steve's wedding. I had to spend most of the afternoon curled up on the couch (the wedding was at Laura's family's cabin) but luckily, around 8pm my energy came back. It does this- I wrote about it a few months ago- I really come to life between 8 and 10pm. I googled it once, because it is so pronounced, and it appears that becoming wildly energetic between 8 and 10 is a symptom of adrenal fatigue, if you choose to believe in such things. Whatever if is, I live for those hours. I danced for two hours straight. People told me I had a wild look in my eye.

A long time ago, a friend of mine named Jess taught me that when it's time to dance, put your hair in a side pony tail and just go to town. So that's what I do.
join The Wilder Coast on Instagram! @thewildercoast
On the dark drive home from the wedding, David and I wrote a lengthy and involved joke about a pack of marsupials, and when I see you next, believe me I'm going to tell it to you. 

I drove Dave and his boys to the Greenville airport a few nights ago. We left the house at 1:30am and I didn't get home till 6am, then I slept for an hour and went to treatment at 8am. Come to think of it, that may be why I didn't feel so great on Friday. But it felt good to be Better Enough to be able to do that. 

Dave and his 7th graders are in Costa Rica for the week. That means Hometeam and I are bachelorettes. Any ideas of what we should get into? We're up for anything that does not involve alcohol, dairy, staying up late, eating grains, being away from the bathtub for more than six hours, fruit, vigorous exercise or legumes. But beyond that, we're up for anything! Watch out world!   

Now- here are some of your bright moments. From brand new babies to corgis on SUP boards, I love seeing what we're all getting into these days. Thank you for sharing your color and adventure and letting me live vicariously just a little bit. Tag your Instagram photos #thewildercoast and join us!


Thank you @ielaraj, Christina (@nitrosister), @midbynorthwest,  Sharon (@wakeforart), Aimee (@ahain0013), Jaclyn (@jccline), Amanda (@amandabuck), and Ellie (@barefootmontana) and Mackenzie Nicole (@oncewildhere)!

And finally, here is what made my heart explode this week. My cousins Tracy and Todd adopted a little baby! Welcome to the world and to the family, Mr. Finn Coogan Plants!! Wow....just....wow.

go hide and be brave

First, some business: If you're just joining us, would you like to read my Lyme story from the beginning? Catch up a bit by clicking here.

If you'd like to listen, I recorded an episode with The Dirbag Diaries.

 Click here to listen to The Miracle of Darkness. 

Now. On with the story.

thank you to Sarajane. Check your mailbox and enjoy your tiny treat at Trade and Lore!

I don't feel well enough today to write anything. I don't have any thoughts about it, either. So much of this disease is blank space. Staring up at the ceiling with nothing new to think about. Same four walls. Same bed. Same bathtub. Pain is frightening and certainly exhausting, but it's the blankness that I find to be the most agonizing. The world is streaming along outside the window, bright and humid, early summer, but time has stopped for me today. I have a feeling tomorrow is going to be better- it usually is these days. Still, it's been a year now that I've been sick. It does start to wear on you.

Dave took that photo of me the day that I was diagnosed. We had this idea that we were starting some new adventure, however macabre. We were curious, confident, ready to pull out all the stops. Grateful to have an answer, finally. My doctors suspect that I was infected nine years ago, and the funny thing is, I can read through this blog and see hints of it. Nearly a decade of troubling symptoms and misdiagnosis and finally we had an answer. I thought it was something worth posing for, brave little silhouette I was.

Later that night I called my sister in law in California. She heard my raspy little voice-

excited

little voice, I was

excited

- and she said, "Okay babe, from here it gets a little more complicated." But what does she know. She's only suffered from chronic lyme for years, and years.

A few weeks before my diagnosis, our friend Michael drove up the Carolina coast, checked himself into a motel and shot himself in the head. The night before his funeral was when I first noticed the rash behind my kneecaps. David called Erich into our room. I was lying in bed in my underwear. "Just turn over so Erich can see it," said Dave, because Erich's in medical school and he is our best friend, although Michael was his best friend. I rolled over onto my stomach, embarrassed, feeling like a little kid. Erich said it looked like poison ivy.

But the next day, as we were driving home from the funeral in a storm, we stopped at a gas station and in the bathroom's silvery, graffitied mirror I spotted the same red, blotchy pattern blooming up my neck and across my jaw. The skin was rough and raised, and it felt burned, like a hair drier held up to my face. That rash stayed with me for three months.

Then there was more, and more, and more, until we flew to New England and David propped me up on the papery examination table at an urgent care clinic, and two weeks later a chipper lab technician called and announced, with inexplicable triumph, "You have Lyme disease!" Sometimes, because of the timing of it, I joke with David and Erich that this was all Michael's fault. We resort to gallows humor. We say terrible things.

So began our big adventure, and I did sun salutations on a rock to show the world how feisty I was. The very next day our friend Taylor drowned. Erich called me in the morning, which is what he did the day Mike died, which is how I knew it was bad, otherwise he wouldn't call me in the morning. "Would you mind telling David," he asked, "I can't do it. I can't do it again."

So I call David at work and I tell him that Taylor drowned, this lovely young man who only knew how to kayak because David and Mike and Erich taught him for six years in a row at summer camp. David suggested that he go to Ecuador to paddle, because that's what David did when he was Taylor's age. Taylor went to Ecuador and drowned. I told David and he goes, "Does that mean he's dead?" I said Yes and David said Ok and hung up the phone.

Listen, I didn't know how to write any of this and I certainly didn't want to. But a few weeks ago my eyes turned yellow from the detoxification or babesia in the liver, and that sort of freaked my husband out. It's tricky to have an illness that is for the most part invisible, although I've lost 20 pounds which is a clue, but all in all David finds it reassuring that I look so normal. So when my eyes became a little jaundiced he didn't like that at all.

Here's the thing though, last week I wrote that some days I feel like this disease and what it's done to our life is not bearable. It is bearable but sometimes it feels like it isn't. I never wanted to write that before, because one does not want to invite pity. Pity makes a sad party worse. But I wrote it, finally, and the very next morning my eyes were white again.

I needed to get this out, the thing about Michael and Taylor. Nobody I know had a great autumn, we certainly didn't. Yes it does get a little more complicated. Perhaps you are safer as a silhouette with no features to discern. Hide. Although you know what they say about hiding. There's no place and you can't run now, either. Blame the bad joints. It is an adventure you were right about that. But you never could have anticipated the blankness that's settled between your ears, or the empty hours: not the sheer amount, nor how slowly they will pass.

If you're interested in helping me get better, 

here is how, here is why, and here is how I'm going to say thank you.

This is how we kill the bad things

Thank you to Jeanne, Erica, Karen and Sri. Check your mailbox soon. 

First, some business: If you're just joining us, would you like to read my Lyme story from the beginning? Catch up a bit by clicking here.

If you'd like to listen, I recorded an episode with The Dirbag Diaries.

 Click here to listen to The Miracle of Darkness. 

Now. On with the story.

Can I get a hallelujah? Because we're done with the Mepron. At least for the next two weeks. Actually, I haven't received the next treatment regiment, the one that comes after I complete the Lyme Biofilm and Babesia Protocol Part B, so perhaps we're not done forever. But for two weeks at least I don't have to swallow the Mepron and for that I'm happy. 

Mepron, also known as Atovaquone, is a liquid antiparasitic and antifungal that is used in Lyme patients to treat Babesia, one of the many co-infections that the tick transmits when it throws up its blood meal into your body.

Mepron is neon yellow and has an instant numbing effect on the mouth and throat, and because it's so foamy and buoyant it's difficult to get all the way down the tubes. It stains the measuring spoon, your fingernails and your teeth. I used to swallow it over the sink each morning, but it came back up so often that our sink and any dishes in the sink became splattered in what looked like thick yellow paint. Now I take it over the toilet. Swallow, throw it up, spit up out, swallow again, clamp my mouth shut, keep it down.

Thumbs up on whatever the Mepron was doing to my invaders, but I hated what it did to me. One odd side effect of the medication is that it makes it difficult to talk. I'm not sure how much of this was Lyme and how much was the medicine, but for the last few weeks I've stuttered, lost my thought mid-sentence, got caught up on my S sounds ("Dinner tonight? That ssssssssssssssssounds like fun") and my T sounds ("I've been having a little T--------------t----t-ttttttttt-trouble T---------t-----t-tttttalking lately.") It's been sssssssssort of tttttttttttroubling. 

This week is all about the Coartem tablets. Coartem is an antimalarial, and I'm taking it alone this week without any antibiotics or cyst-busters, no cipro, no omnicef, septra, enula, artemisinin or lactofernin. This week is a direct attack on the Babesia, a malarial-like parasite also known as a piroplasm that infects red blood cells. It's the culprit behind the drenching night sweats, air hunger, my constant need to yawn, yawn, yawn, nonstop, for hours at a time. It's the reason I run out of breath in the middle of a sentence and have to gulp in air like an excited toddler, and the reason why my liver is painfully enlarged.

I'm telling you. Lyme Disease is no joke. 

A friend of mine who lives in Africa gave me some gentle advice about the Coartem. "Try not to lie down after you take them, because they can get really lodged in your throat." She said. And then, carefully, as if it were a casual aside: "They also have been known to bring on a little fever."

Last night we had dinner early. On Mondays, David only has an hour break between work and Real Estate School which he attends at night, so we eat around 5:00pm. I swallowed my four Coartem tablets and had the kitchen all clean by 6pm. I thought I'd take a little outing up the street- we'd run out of lemons- but halfway to the door I suddenly felt like I was swimming and if I didn't get to bed that instant, I might lie down on the floor and die. It seemed like breathing was no longer a reflex- I had to focus on drawing each breath, letting it out, taking another one. If I could just keep breathing, get to bed, keep breathing. What is my job? My job is to get to bed. To keep breathing. That's my only job in the whole world. That's all I have to worry about.

Seeing how it was the early evening in late spring, it was very bright out, and I still haven't gotten around to putting up curtains in my room. I lifted the dog into bed and crawled in next to her. What is my job?  I was freezing, so I got up one more time to close all the windows, then fell back in bed, dug myself a spot beneath the flannel covered down comforter. Keep taking breaths. I remember one final thought before I tumbled into a thick sleep swimming with strange creatures- "What is my job? My job is-" 

David came home a little after 10 and found me burning up in my bed, slick with sweat and smothered in blankets. I woke up just briefly as he threw open the windows and yanked the comforters off of me. The dog startled and rolled over onto her back. The next part I either dreamed or it really happened- Dave was sitting next to me with a bucket and a blue cloth, wiping my forehead and murmuring, "It's okay sweetheart, fevers are how our bodies kill the bad things." To which I replied, or I think I replied, "I never get fevers." 

My friend Steph called me the other day. Stephanie, who has been through her own 16 month long journey to hell and back. "Is this real?" She asked. "Is this actually happening? I keep wanting to believe this is just some dramatic story you're telling."

I think it's real, Steph. Although I'm just catching up to that fact. I think I've been in denial for a long time about this situation, how serious it is, how long it might last.

What is my job? 

Join me on Instagram: @thewildercoast & @theglowery

If you're interested in helping me get better,

here is how, here is why, and here is how I'm going to say thank you.

Fun Friday Flip Out #1

come say hi on Instagram! @thewildercoast

It's entirely possible that weekly features are the kiss of death for a blog. They're really hard to keep up. I don't know why. Remember All in a Week? Actually I did pretty well with that until I stopped doing things with my week because I got sick. That was a bummer but I'm sure I'll feel better within a year or three. That's what they tell me. 

I look back on those posts and think man, I used to have a lot of energy, also a lot of Patagonia tank tops. Yonton's cat ate most of them when I first moved to Asheville. Yonton's cat is named Rupert and he's coming for your threads.

Nevertheless I am moving boldly forward with my new weekly series, and I'm calling it the Fun Friday Flip-Out! Things have gotten weighty on the formerly wild coast! Which is fine, everything has its season and all that, but I'm thinking on Friday we can all have a little break. Post some photos. Relax.

And we can all be part of it, kind of like Mystery Prize Monday. (Now, THAT was a good time!) I would love to feature some of your vibrant, colorful, fun and adventurous photos on the Fun Friday Flip Out. Whatever you consider to be vibrant. Tag your Instagram photos #thewildercoast. I really look forward to seeing them.

We need something uplifting after this week in particular! We had the insurance blow, I started the 2nd week of the Lyme Biofilm & Babesia Protocol Part B which isn't too much fun, one of my childhood best friends got rushed to the ER with acute Lyme and I threw up a lot of Mepron into the sink and David saw. I prefer to throw up with only myself for company. 

An aside here- a friend of mine from boat world, Jona, is British but he lives in the Middle East. Yesterday he wrote me, "Now David- that man deserves a medal or a biscuit or a bottle of Whiskey." This is correct, particularly after the Mepron sink incident. That stuff is neon yellow and...how to say this....quite foamy.

Anyhow, today on

Instagram

I posed this question:

(Quick note from disgruntled internet user from no-response account: 'You look fairly ridiculous in whatever that is. Do you ever think you might feel uncomfortable later on in life having this up here? Just a friendly reminder that every thign (sic) you put online stays there forever.'

Response : I think you're playing it fast and lose with the word 'friendly'.)

Lately, I've been thinking about all the wonderful ways I'm going to pay forward all the lovely things that people have done from me, from letters to donations to sharing their own stories. I keep thinking BIG, like so big that it won't actually happen unless I build a time machine, turn back time, and invest in the very first Starbucks stock like my friend Dave did. Then I would buy everyone their own castle, with big a pasture filled with corgi puppies and a barn filled with some more corgis.

Until then, what are some kind, selfless gestures that do not require one to spend much money? Because there are a lot of us who would love to do nice things but do not have a disposable income at the moment.

Of course I am thanking each person who is helping me recover from Lyme individually.

I am enjoying writing personal thank you letters and choosing the perfect treats for those who donated, so it's not a fast process. Thank you for your patience in the meanwhile.

What I'm talking about here is life in general, because the kind and generous people who are helping me are inspiring me to live a better, more generous life of my own. One filled with more actions and less intentions. I posed this idea on Instagram, and here are some of our ideas so far. Leave more in the comments if you got something, anything:

- When you receive great service somewhere, ask to speak to the manager and tell them the name of the person who helped you and what a good job they did. Managers mostly here angry comments, so they take note when they hear something positive. This could mean a really good day, job security, even a promotion to someone who works really hard, and it will only take you a few minutes.

- Check out a Women's Build with Habitat for Humanity -Molly

- Mix Tapes! Playlists! - Freedom

-  Take the time to share your experience, hope and knowledge about difficult things with friends and even strangers who are going through something similar. This will require being open about your struggles, but it may help someone feel less alone and connect them to potentially life-saving resources. -Sharon

- When you think about it, getting paid is a valuation of your time. Time = Money. But if you're a mathmagician (his word, I love it) then Money = Time. So yeah, time. Phone calls, text messages, long walks at the beach at sunset. -Austin.

- Last year I started growing organic herbs and I dehydrate them and give small jars to peeps to use in their cooking! -Kelly

- Only buy coffee is you can afford to leave a tip. That doesn't mean don't buy coffee....it just means, factor tip into the total as you consider the cost. I'm not sure this really fits with your question but it's a good approach to making the world a better place, one hard-working barista at a time. -Sam 

-I made a resolution to write and send one handwritten letter a week, just because. - Jacyln

- Remember the 'what makes you proud' post? I will never forget someone's comment that she gathered all the stray grocery carts in the parking lot, and someone saw her and remarked on how thoughtful and kind a gesture it was. I have remembered that for two reasons: I try to look for the inconvenient need and rise to meet it, and also I try to catch other peole being kind and tell them I see them. Both matter immensely. -Sara

-Instead of buying cards, I find scrap materials and draw and make thank you cards for people. Homemade is always more meaningful. I have a lot of old magazines, so I flip through and find images that make me think of the person, and paste that on as well. -Kayla 

-If a friend or neighbor mentions they're going on a trip, offer to water their garden or drive them to the airport before they even ask. Many people will never ask for help, so you gotta pounce and offer! If they say they don't need it, ask one more time.

-If you're headed to the park or on a walk, offer to take someone's dog out with you if you know they're at work. 

tag your favorite vibrant photos with #thewildercoast and you could be on the next FFF

- At work (Toms) we talk about thankfulness a lot. My company send all our full timers on a "giving trip", in which we go out with the nonprofits we partner with and help put shoes on children. Maybe the most powerful moment for me going to Nicaragua with Feed the Children wasn't feeding or clothing these kids, but rather playing with them. Like Austin said, TIME. What we can give or do to ease heavy burdens is so valuable-- and on the other side of that, to have immense gratitude for what we *do* have in life.

 - Adriane 

-I've been making an effort at being more positive in general lately and working on not putting others down in a joking way at all. I check in with friends I haven't heard from in awhile or ones I know are going through a difficult time; making a point to reach out and see if there's anything I can do for them, but letting them know there's someone to listen to them as well. - Casey

- Go out to coffee with a friend and ask them a lot of questions, all about what's going on in their life, what their childhood was like, where they've traveled to. It doesn't have to be an interview! But people really light up when they talk about themselves and feel heard. - Drew

- My best friend doesn't own a car, so I text her every single time I go to the grocery store to see if she wants to come along. - Sadie 

- When you're out with friends, take lots of happy photos, and make sure to send them out via text or email when you get home. It's so fun to get photos! 

-

If someone has become ill or if they have a family member who become ill, take a few minutes to learn just a bit about what they're facing. The best thing I heard after I got sick with Lyme is when people said, "I did a little research on Lyme disease, because I didn't know much about it." You don't have to go into peer-reviewed academic papers, but it's a really nice gesture that says- I want to understand a little more about what you're going through. 

- If a song, youtube clip, podcast, image, anything makes you think about someone- send it to them! All you have to write is, 'I thought you'd enjoy this!' Knowing that someone is thinking about you throughout the day is the best feeling. -

Aimee

Thanks everyone! Post more in the comment section if you some more ideas and remember those instagram shots: #thewildercoast. I love you! But not you, disgruntled internet user. Sorry. I don't love everyone. 

If you're interested in helping me break free of Lyme disease, here is how, here is why, and here is how I'm going to say thank you.

Oh....and since it's Fun Friday Flipout and I can post whatever I want....here's my favorite flip-out I've ever seen: 

almost

David came home from work today and I was lying in bed. I just started Cipro. I hear it's full of fluroquinolones. I don't know what they are. They makes you feel really sick. Omnicef, Azithromycin, minocycline, mepron, flagyl, diflucan, septra, coratem, and now Cipro. So I was curled up and David walked into the room and he was crying.

My husband works full time as a middle school teacher. Towards the end of this year the board of his school agreed that the staff would receive health insurance.

Next year will be his sixth year at the school and he will finally get health insurance. Spouses, too! The board said they were 90% percent sure. David filled out all the paperwork and that night I took him out to a restaurant and we celebrated.

I am happy to have insurance. Insurance doesn't cover Lyme Disease but I'm happy to have it. But it is hard to afford, nearly $1,000 a month for the two of us, and our parents help us pay for it. We could not afford it otherwise. If you're in the working class you can't pay for health insurance and pay for a disease and pay for a house and ever get ahead. 

We're looking better now, things are getting easier. 

But today the board changed its mind. It decided at the last minute that it was not plausible to provide the teachers with health insurance. David cried and held my hand as he told me.

I'm so sorry. There has been so much hope and gratitude and delight lately. I want to share it with you. I will soon. You are a bright light in a cold harbor.

But the hard stuff is getting to me tonight. Tonight I can't handle this anymore. It feels like it is killing me. Maybe it's the fluroquinolones.

I think I'll feel better in the morning. I'll try and get back on here tomorrow and think of something a little lighter to say.

If you're interested in helping, here is how, here is why, and here is how I'm going to say thank you.

Azalea

find us on Instagram: @thewildercoast
Let's talk about something else today. This thing is dragging on and on. I want it to be over. I want to wake up one morning with no pain, no trembling or spasms or confusion and 20/20 eyesight, then I'll hop over to the place where they collect my blood in tubes every week and the blood will show no sign of infection: no evidence of spirochete flagella, no elevated this or that, just the right balance of red and white swimming along, nothing to see here!

Then David and I will celebrate with a bottle of wine, and I will have one perfectly chilled glass, and the next day I'll drive over to the pill collection center like a responsible citizen and heave my bucket of medicine into their special bucket of medicine which will later be incinerated, so that the fish in the river don't become dazed and sterile, and later that day I'll redecorate my bedroom just to signify how different things are going to be now.

We'll have a fat red headed baby and I'll work part time at the newspaper, David and I will argue a little over the bills and the dishes, and that arguing will sound like a musical compared to the silence of sickness. We have a second baby, a little girl with blue eyes, the fat red head is now a burly toddler who chews on his sister's arms and wrestles his dad. Money is tight but I go back to school, the newspaper throws me a goodbye party in the break room with a sheet cake, and I become a counselor who helps people who are sick with chronic or mysterious illness and I write a second book, a friendly guidebook for people with Lyme that says Relax, here is a road map with all the answers, this is the definitive guide to health, read this and only this, because I've done all the research for you.

And whenever I happen to run into you, you who is reading this, I fork over the squirming red head and the blond baby, the two lights of our lives, our little joys, and I say: thank you for these two. We tried everything to get rid of my Lyme, we did everything, and something worked, and now look who we have.

This is what scares us most. I can deal with my own body, my own day to day health. But Lyme is congenital, while it's still inside my blood and my organs there's a strong chance that I would pass it to my baby and she would not be born at all, or she would be born very ill. Or she would come on out just fine, screaming her lungs out while we looked on in awe, it's hard to say. It would be quite the dice roll.

I guess we never talked about something else. At this present moment, I suppose I don't actually have too much more to say. It's azalea season. I'm so lucky. I'm very tired.
If you're interested in helping, here is how, here is why, and here is how I'm going to say thank you.

"when they die- they don't want to die"

Behold, some solid evidence as to why I'm not a video blogger. I did want to show you these two clips, however, because the difference between makes me hopeful that this cruel thing can be reversed, not just for me, but for all of us.

This first one is from my 3rd hour-long Pulsed Electronic Magnetic Frequency session. As you can see, it's difficult for me to talk or concentrate. (I didn't do such a stellar job explaining the Herx reaction, did I.)



Now here we are at hour eleven. Please turn your head sideways as I don't know how to edit video. They cranked the machine way down to make the whole process easier to endure, even if it means extending the amount of hours prescribed. At this point I have 19 more sessions to go. First thing you'll notice is I lost the sunglasses; the photophobia is easing up and indoor lighting is tolerable for the first time in a while. Second thing you notice is that I can talk!

In this one, I begin to say thank you.



I'll be saying thank you for the rest of my life.

Princess



May. Mornings:

On certain mornings I still wake up locked in sleep paralysis. It's a sluggish, weird thing, not the greatest omen for the day. Once my mind is awake, I begin the uncomfortable process of reconnecting it to my body, beginning with my eyelids. I open them heavily, they fall shut. I do it again, keeping my eyes open for a few seconds longer each time.

David helps to unlock me. He brings me coffee in bed every morning at 7am. About half of the time I'm asleep in our bed. The other half of the time I'm passed out in my own room, electrodes from the TENS unit still stuck to my shoulders, the oil infuser blowing lavender steam, fan blasting, sound machine set to Tropical Summer Night. David wades carefully into the room, switching off the various machines as he makes his way towards the bed.

Dressed for work, he props me up, leans over and tilts the cup of coffee into my open mouth.

Recently, my friend Aimee sent me a mug that's tapered at the top, so it's easier for him to feed me (drink me?) without spilling. David and I have gotten used to this bizarre ritual, the way you eventually get used to most things.  He calls it, 'First sip.'

"Are you ready for first sip?" he'll ask as he enters the room, switching off the sounds of Jungle Night. After the first sip, I'm ready to drink on my own.

David's sweet but dry humor has gotten us through a boatload of misery this past year as we try and make our way through the murky landscape of Lyme Disease. One afternoon I tried medical marijuana- a god sent for many, but it sent me into convulsions. Lying on the couch watching television, I twitched like a rag doll, pressing my palms against my eyes. "Well," David remarked calmly from his chair. "I guess that didn't work."
Every morning I drive out to the neuropathy center on highway 40 to receive an hour of Pulsed Electro Magnetic Frequency treatment. The nurses there are very kind. They call me Sugar and Sweetheart. They say the headgear makes me look like Princess Leia. I lie there and soak up their maternal clucking, accepting their offers for an extra blanket or a glass of water.

My favorite is a young nurse named Becky, who has straight dark hair and is constantly chewing gum. She's sarcastic and witty and fun. When I first started going to the center a few months ago, I told her I felt like I was dying. (Melodramatic, certainly- lying on the table, whispering, a wide-eyed stare- but what can I say, other than those early days were marked by pure terror.)

"Oh, you aren't dying," she responded in the heaviest North Carolina accent I have ever heard. "But you are real messed up."

That's what I like to tell people now when they ask how I'm doing. "I'm not dying. But I am real messed up."

*****

Please consider helping me fight my battle against Neuroborreliosis by clicking on the yellow button on the top right of the screen. I am five months into one year of intensive and incredibly expensive treatment, not one dime of which is covered by insurance. I've dreamed up an elaborate way to say thank you.   

An Open Letter to the Girls at Woodstock Union Middle School

To the Young Ladies at Woodstock Union Middle School,

Oh, ladies, welcome. Welcome to the increasingly complicated world of being female. With so many in power trying to turn back the clock on human rights, I am sad to say that I feel your initiation into this world was inevitable, but I am so sorry that it had to happen this early. And I am deeply sorry, bewildered, and irate that it happened at the hands of your teachers, those who have been entrusted to guide and empower you.

Ladies, the specific teachers and school administrators who were responsible for the decision making that led up to the events on April 22, 2016 utterly failed you.

By now you have no doubt heard that the community is outraged- a community that includes teachers, parents, alums, and members of the community. Rest assured that we are vocal, organized, and intent on seeing that the correct actions be taken to remedy what we see as a shameful mistake. But I wanted to write a letter to you, because I was you not so very long ago.

I attended WUMS from 1997-1999, and I remember all of it. I remember every class project, every algebra test, the fantastically awesome Euro-market (do you still have that? tell me you still have that!) every walk between classes in the mint-green hallways. I learned an enormous amount from dedicated teachers who had my best interest at heart.

But academics are not why I attended middle school, it turns out. I attended middle school to learn how to interact with my peers and my teachers, to begin developing my social skills and start to understand the impossibly complicated nuances of flirtatious interactions, to test my boundaries, to be corrected when I stepped out of line, to learn that contrived social hierarchy is a shape-shifting animal that should be observed, understood but not taken for law, to be crushed by disappointment and uplifted by tremendous joy, to learn to apologize, to learn how it feels to be picked on so that I might never, ever find myself picking on others.

And then- yes, there's more! There's the sweaty stuff nobody wants to talk about but that nonetheless consumed me and all of us. I spent all of 7th grade dreading the onset of my period and yet utterly mortified that it hadn't arrived yet, trying in earnest to hide my flat chest while others tried just as dutifully to hide their fully developed ones. I lived in my cousins' hand-me-downs and had no idea what the right clothes were and where to shop for them (remember, this was Woodstock before internet shopping...pity my generation!) and on top of it all, it would be years and years and years until I kissed a boy and this notion laid heavily upon me.

All this? This is enough to deal with. And I came from a loving home, the perfect paradigm of family. Think of all the young ladies who are struggling to keep up with all of this at school while dealing with much more complex issues at home.

And then, ladies, in the midst of all this, they corral you into the gymnasium and place upon your shoulders the crushing  concepts of shame and victim blaming, those potent seeds of the Rape Culture that's grown so inexplicably and horrifically rampant in today's world?

Oh please.

Listen up, ladies. There's nothing wrong with a dress code. School is a formal place where we begin the process of learning how to be young professionals. (Speaking of, did they inform you, at this little gathering, of the wage disparity between men and women? Never mind- another time perhaps.) Certain styles are not appropriate for school, and that's fine. This is true for everyone, regardless of gender. School is probably not a great place for pajamas, for example. Except on pajama day.

A dress code may be put in place to help you and your male counterparts prepare for the professional world, not because your bare shoulder may detract you male counterparts from his work. Do I have to even say this? It appears I do. What an archaic, backwards, and above all, damaging concept they tried to instill in your developing minds. Once again, I am so very sorry that you had to experience this. At school. At your age. At all.

Ladies, you are not burdened with the responsibility of how men choose to act. That will NEVER be your responsibility. Oh, you will hear it, again and again. You will hear on the news that a rape victim's case was dropped in court because she chose to attend a party where alcohol was served. You will hear terrifically terrible things aimed directly at women.

Do not internalize it. Fight back. Fight back with respect, dignity and fire. Now is the time- and you're already doing it, I'm thrilled to see it- for eloquence, for conviction, for respectful dissent. Now is the time to organize, write letters, make phone calls, stand up and keep standing, because this is only the beginning of a long, hard fight.

I hope you realize just how many of us are standing with you and fighting for you,

In Solidarity,

Melina Coogan,WUMS '99

(Third from left, in 8th grade, wearing a JC-Penny tank top that would be considered 'too provocative' by WUMS current dress code.)
find me on Instagram : @thewildercoast






junkie


January.

I'm lying in my bed covered in insects. I try and brush them off with my hands but I can't get rid of them. They're the worst type of insect- everywhere at once, biting, stinging, invisible. I twist against the blue flowered sheets, trying to relieve the crawling. The twisting becomes twitching, my muscles spasming until my I'm nearly jerking off the bed, rattling around like that time I was driven to the put-in of the Grand Canyon in the back of a pickup, bouncing through the rutted roads of Polygamy Country in an ice storm.

But there is no adventure now, no story to tell later on and no river waiting for me at the end of the road. Only me and a disease that half of the medical world will not admit exists, even though the Borrelia antibody continues to show up positive in my blood, band after darkened band on the Western Blot Test.

David is lying next to me, although I wish he would leave so I can be spared the terrible look on his face. He strokes the hair around my face until the convulsions begin, then he draws his hands back, the two of us repulsed by whatever mechanisms is causing this grotesque misfiring of my neurons.

By now, one month after the official diagnosis, my nightstand is piled with books on treatment, on Lyme Disease, littered with tissues and pill bottles, mostly benzos: ativan, seroquil, klonopin, lorazapam, ambien. I look like an addict, like some overprescribed fiend whose future is nearly guaranteed to lie in the hands of some Xalisco-boy black tar heroin cell whose drivers will arrive at my doorstep spitting balloons out of their mouths.

Only I hardly ever take these prescriptions; each one of them is like a hand that pushes my head under water. Half of them don't work, so why bother. The others will relax my muscles but they'll also soften my brain, leave me feeling drugged up for days, lost in a heavy fog of fatigue and nausea. They are not worth it. Instead, when these episodes hit, we wait them out.

When the convulsions first began, we considered going to the hospital, but that was a brief notion. I'm a smart girl; I know you can't show up at the Emergency Department and explain how you feel bugs crawling all over you. They'll just waive you away or ship you off to psych. I don't blame them for that.

As a matter of fact, you can't show up at the Emergency Department and tell them you have Lyme, either, no matter what the symptom. They'll waive you away or they'll ship you off to psych. I do blame them for that.

Poor David. This isn't what you thought it would be like, is it, honey.
find us on instagram : thewildercoast
***

Still January.

David is costarring in a kayaking film and we're driving down to Charlotte to watch the premier.

The day before, we had dinner with some of David's old friends, one of whom has battled chronic Lyme since she was a teenager. Since I am about to begin treatment, she was trying to prepare us for what the first few weeks or months might look like, when the disease becomes temporarily and often violently worse before it gets better, a phenomenon known as the Jarisch-Herxheimer reaction.

David held my hand as we walk back to the car after dinner, his face set. He barely said a word that night, just threw his keys on the nightstand and fell into bed.

And now we're driving in silence on what should be a night filled with excitement, the sprawl of Catawba County streaming past in a blur of neon.
My new husband's capacity for compassion and patience rivals that of my parents', whom I consider to be the pinnacle of kindness. Yet my own abject fear and paranoia has left me acutely aware that, unlike my parents, David could walk away at any minute. Our town is teeming with young women who love to run around in the outdoors, who would delight in my husband's humor and bright red curls and enormous heart. He could fall in love again and get married again, and hope that this time his bride would not transform a few weeks after the wedding, as I did, into a thing that shakes and cries and stutters and slurs, that drops plates and glasses and torpedos into walls and asks over and over, "what is happening to me?" 

I know he won't leave me, but what I don't know is whether or not I can stay with him if I get worse, if I can pull him down with me. Is that what you do to someone you love?

(Is it?)

I cannot take the silence in the car, and so I make a split second decision. I tell him that if I don't recover within the year, I am going to leave him. I will not burden you with such a choice, David, whether or not to stay with me. I will leave you.

He grips the steering wheel.

He says, "Thank you."

That night, my husband runs first descents in Labrador, Canada on a huge projector screen while a hundred beautiful young kayakers in trucker hats look on. Up in front of the crowd after the show, David explains that three days after returning from this trip was his wedding day. "This trip was my bachelor party," he says, and the crowd laughs. My friend Maeve tells me this later, because I miss the movie, I miss all of it. I'm locked in a stall in the bathroom, holding my head in my hands, sobbing.

Things are so bad. Things are very, very, very bad for us right now.

But they get better. I'm writing this in May. There is more to the story, but our life doesn't look like that any more.

*****

Please consider helping me fight my battle against Neuroborreliosis by clicking on the yellow button on the top right of the screen. I am five months into one year of intensive and incredibly expensive treatment, not one dime of which is covered by insurance. I've dreamed up an elaborate way to say thank you.   

Joy


I've learned that gratitude is a vitally essential component to healing from illness.

For the next few weeks it's my job to find creative ways to be grateful for you.

I posted something on Instagram a day or two ago on how paying for my Lyme treatment has left us broke, as it does almost everyone who is faced with this insidious, painful, cruel disease.

As a freelancer, I pay 500$ a month for an insurance policy that does not cover my condition.
Insurance does not cover Chronic Lyme because the CDC does not recognize it as a treatable condition. My husband works full time as a teacher, but because his school has less than 50 employees, they are not obligated to provide benefits to their workers. Like me, David pays an exorbitant amount every month for private insurance.

 This disease is relentlessly complicated and incredibly expensive- thousands and thousands and thousands of dollars for doctor visits, alternative therapy, pain management therapy, supplements, medication, medication to cover the side effects of the other medication. The cost has crushed us, but we refuse to accept that this potentially degenerative condition is untreatable. There are effective treatments- they are cutting edge, experimental, and expensive.

I've been thinking lately about a creative way to help raise money to help pay for my recovery. I am four months into what should be a year or more of intensive antibiotics. It's made me feel a lot better so far, but my recovery has reached a plateau, which I was warned could happen. My neurological issues have not improved, including diminished eyesight, muscle tremors, cognitive impairment and severe neuropathy pain.

My doctors are now recommending a treatment called Pulsed Electro Magnetic Frequency. It is a 30 hour treatment spread out over ten weeks. They have seen this method, PEMF, drastically change the course for people with illnesses that present neurologically, as mine has. The cost, unfortunately, is prohibitive. Three thousand six hundred dollars, on top of what we are already paying and already owe, is impossible. What we find the most daunting about this situation is the longer you wait to treat, the harder it becomes. Permanent brain damage is a very real possibility.

So, back to my brainstorming over what I could offer in return for donations. Yesterday I realized: there is no one thing that would appeal to everyone who is kind enough (and able!) to donate (and please note that I understand that there are many, many of us who are not in a position to donate) - so instead of trying to invent a one-size-fits-all thank you, I'll just ask you!

If you donate to my treatment fund by clicking here or on the yellow button at the top of the page, Paypal makes your email available to me. I will contact you via email, and we can discuss what would give your day the brightest little spark of joy as a thank you. Yesterday, after a few donations came in, I wandered around town with my best friend (and was out of the house for three hours! A record for me lately!) and browsed around for tokens of appreciation: gemstones, little packets of coffee, silver and gold bird banners, prints of mountains and funky camper vans, stackable brass rings...all sorts of things, all local to Asheville.

Of course, I can also offer any print you'd like from my collection of travel and landscape photos (I will post them next week) or homemade sea glass pendants from freshly picked sea glass, even essential oil and flower petal infused bath salts and other organic beauty products I make myself.

And finally, every gift comes with a hand written thank you letter. And as you know if you've donated to The Wilder Coast before....I really fill up that card! I guess I have a lot to say.

This photo was taken of me yesterday, during my time browsing about town feeling incredibly grateful. My mom says that I look that happiest she's seen my since I got sick....and I was.

Thank you. And if you're not in the position or mood to donate, the next best thing you can do for me? Is to read my blog. It helps to tell my story....it helps make everything better.

(If you would like to donate from your mobile phone, click here.)