Wednesday, February 10, 2016

Circadian Interruption

Part 1: Nobody Down There Will Help You

Part 2:

It's September. I cannot sleep. This sleeplessness looks different from week to week, but every night shares the same common denominator: the apprehension and eventual dread as the day draws to a close and the normal bedtime routines begin, the mute frustration of lying wide awake next to my husband, trying not to move or make a sound, hoping to at least protect his sleep if I cannot have any of my own.

Before long I move out of our bedroom and into the guest room. The walls are a creamy yellow, there's a ceiling fan above the bed that spins languidly through the still warm autumn air. After a few nights it's no longer the guest room, it's my room. Interstitial Cystitis forces me to get up 16-20 times per night, catching splinters of sleep in between.  It would be impossible for anyone to share a bed with me and get any sleep. I make halfhearted jokes to Dave that we're already sleeping in separate bedrooms after two months of marriage. He gives a halfhearted laugh in return.

After a few weeks, the IC pain melts away, transformed into a new set of symptoms. Lyme symptoms are migratory, they come and go and blossom at random into something seemingly unrelated, which is part of what makes the disease so difficult to understand. I'm prescribed the highest legal dosage of Ambien, and that combined with the lack of urgency to get up and pee every three minutes means I can sleep for five or six hours straight. I swallow my pill and watch the world of my bedroom start to loosen around the edges and then bubble away. I even start sleeping next to Dave again, although not for long.

Late September I wake up around 2am soaking in sweat. It runs down my face and chest and pools in the slight curve of my lower back. I kick back the blankets, damp and clinging, and feel a cool draft of air wash over me. The next morning I peel back the fitted sheet to let the mattress top dry out. This becomes a nightly occurrence.  If I flip around, head by the window instead of at the headboard, I can find a piece of my bed that isn't soaked in sweat. This is how I wake up each morning, reversed.

Night sweats are a side effect of Babesia, a common co-infection present in nearly all Lyme patients. Babesia is a parasite, a protozoan similar to Malaria that requires its own regiment of treatment outside of antibiotics. It's one of twelve currently recognized co-infections that can accompany Lyme. Patients who are unaware of their confections and do not treat them appropriately do not recover.

By Halloween, the sleeping pills bring no more than three hours of sleep. I'm awake again at 2:30 am. If I take another sleeping pill, I get two more hours. The frustration is getting to be unbearable. I make a rule for myself: if it's after 4:30 am, I'm allowed to roll out of bed and begin my day. Whenever I turn over and see that it's 'morning', in my world, I feel immense relief.
Like the majority of people infected with Borrelia Burgdorfia (Lyme disease), one of my most aggravating symptoms, ubiquitous yet also hard to pinpoint, is hyperacuity. When I'm finally diagnosed in December, I'm nearly gleeful to learn that there's a mechanism to blame behind my growing intolerance of sounds, my sensitivity to light, the way I startle and flash with anger when someone in the cafe drops a cup too forcefully into the dish bin.

And so, like other patients, I begin to view those early morning hours, dark and calm, as the most tolerable and desirable of the day. Feet on the cold floor, I dress and drive across town to Starbucks, often waiting for a few minutes in the driveway as the wipers scrape the first frost from the windshield. Asheville is a notoriously laid back city, most coffee shops aren't even open till 7:30am, but Starbucks, thank goodness, opens at 5am.

I take my coffee back home, climb back into bed with the light on, and enjoy a few relaxing and productive hours of work. Most day I drift back to sleep in the afternoon, waking up an hour or so before David returns from work. I take a shower, hurry to change my clothes and busy myself in the kitchen so that when he walks in the door he'll see me like this, functioning, purposeful.

Another puzzle: regardless of whether or not I've slept all afternoon, I always come to life between 8 and 10pm, on the dot.  I am not just awake but energized, in an absolutely outstanding mood, sliding through the hallway in my socks, rolling around on our bed in a fit of laughter. David's bemused, then annoyed, then asleep.

Still feeling very cheerful, I go to the kitchen, open the computer and try to work, although lately I've been distracted by reading those useless little articles that pop up on Facebook, about how lemon juice will cure cancer, and people who suffer from insomnia are statistically more likely to be to highly creative geniuses, (sources unknown, studies not cited, none of it true.) But alone in the kitchen with the whole dreadful night stretching before me, those little articles and their accompanying photostock images of lavender plants and women in bathrobes, they feel so easy and hopeful. Maybe I'm just a highly creative genius. I knew it.

Except for what's happening to me feels different than an everyday bout with insomnia, a condition that's run through everyone in my immediate family multiple times over. This is, as one Lyme literate psychiatrist, Dr. Robert C. Bransfield, describes as, "a complete circadian interruption," caused by the damage done by spirochete to the neurons in the brainstem, which control your sleep-wake cycle. "When you lose some of those neurons.....this can create a vicious cycle of neurodegeneration."

A vicious cycle because when you cannot sleep, you cannot heal.

A disturbance in sleep patterns is often the first presentation of chronic Lyme disease. In one study, 100% of Lyme patience suffered from sleep disorders.

So I continue to sleep in strange, sporadic bursts, my daily routines shifting and resettling, breaking away from those of my husband and the people around me and beginning to floating away like a piece of ice in a stream. I continue to lose sleep, and I get worse.

Thank you for following my story of fighting chronic neurological Lyme Disease. Follow me on Instagram: @thewildercoast and @from_lyme_to_emerald. Feel free to share this story to help promote the understanding and acceptance of chronic lyme disease. 

Monday, January 25, 2016

Nobody Down There Will Help You

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On December 8th, 2015, I walked out of a brand new practitioner's office holding 13 prescriptions. Among them were anti-psychotics, anti-seizures, anti-convulsants, neurotrophic meds, sleep meds, anti-depressants and mood stabilizers.

This might seem odd, considering that the half dozen doctors I'd visited in the previous two months had insisted, in what felt like a single orchestrated act of dismissal, that I was, in fact, "a very healthy girl".

So I kept switching general practitioners, making the assistant fill out the paperwork she wasn't happy to be filling out, transferring my files to someone new, someone who might listen to me as I sat on the examination table, trying to steady my voice as I read through the growing list of symptoms that I keep recorded on my phone. 

At these appointments, in an effort to appear like someone who should be paid attention to, I always dressed as if I might be attending a job interview afterwards. I learned to keep my words even, free of emotion, as if I were a lawyer presenting the case on behalf of myself. I would try to get through my list of symptoms as quickly as possible, but there was never enough time. I'd choose my top five, the ones I found most disturbing, the most difficult to ignore.

But it kept not working. One by one the doctors appeared in front of me, white coated and dully impressed with themselves. They'd glance at their clipboards and assure me there was nothing much to worry about. One of them handed me a thick white binder filled with the names of local therapists. Another fixed me with a sympathetic look and said, "I'm so sorry you're depressed."

I never said I was depressed. 

On one particularly confusing afternoon, a younger MD I'd been seeing on and off since I moved to Asheville, seemed to be absorbing what I said. She listened, leaning forward with her hands clasped around her knee, nodding at the appropriate times. But the time I'd gotten through my allotted time, she smiled and sighed, with a dramatic shrug. Then she asked brightly, "So are you planning on having a baby any time soon?"       

By the time thanksgiving came around, I was, if not depressed, then at least completely baffled by the fact that nobody would help me. It was the first thought to hit me every morning when I woke up and felt the symptoms descend. On some mornings, my mind would awaken up but I'd find myself unable to move or even open my eyes- a type of nocturnal seizure. I'd lie there for a minute or two, conscious but paralyzed, rolling the question around in my head.

Nobody will help me.

Why will nobody help me.  

It was over thanksgiving that I dragged myself and my husband to a privately run urgent clinic, having been hit with an intense and mysterious symptom known as mal de dembarquement. If I was unable to catch the attention of any doctor, then maybe husband could. 

We were spending the holiday in south central Vermont, where I spent over half my life. At the clinic, I asked for a blood draw to test for lyme. I figured I could take advantage of being in New England, where Lyme is endemic and the doctors, I believed at the time, were savvy ("lyme literate."). The two times I had requested a lyme test in Asheville, I was immediately shut down. ("We don't have lyme in North Carolina.") On both occasions I backed down, thrown off by the way the doctors' faces instantly stiffened with annoyance. 

This time, I demanded the test. I refused to leave until they agreed, until I watched somebody leave the room holding a vial of blood. And the doctor fought me. At first, she gave me the familiar chorus: "Look at you, you're healthy." 

"I'm not healthy. I can barely walk right now."

"You say you can barely walk. Come back to me when you can't walk. Then we'll discuss what could be wrong." (This is not an exaggeration, although it's such outrageously bad medicine that if my husband had not been there to witness it, I probably would not believe my own memory.)

"I'm covered in this rash. It feels like I've been burned. I never get a rash."

She waved her hand- "That'll go away. You need to see a therapist."

"I already see a therapist."

"Listen, I could give you a lyme test, but the tests are largely inaccurate. They give false negatives the majority of the time."

"Maybe mine will be positive." 

"It won't be positive. But what if it is? What if you discovered you had Lyme disease, why would you even want to know? Listen to me. You live in the South. Nobody down there will help you."

This is when David spoke up from his chair in the corner, completely even-keeled. "If she has lyme, she wants to know because it's her right to know."

The doctor turned to face him, incredulous. "And you approve of this?" 

We both just stared at her, barely comprehending the audacity of a doctor to ask approval from a patient's husband like this. She threw her hands up. She was over us. "Fine." The door clicked shut behind her.

She was correct about the lyme test: they are complicated, and notoriously inaccurate. Many people who suffer terribly from lyme disease are presented with false negatives. (The CDC criteria misses between 1/3 and 2/3 of all true positives, especially in later stages.) In many cases, lyme is so covertly hidden within the body that the blood shows up as clear, the blood lies, although mine didn't. 

Tuesday, November 3, 2015

Stories, October

Thank you this week to Katherine in Texas and Katie in Maryland 
On Monday I go to see my doctor. Just my general practitioner, not a specialist. The nurse weighs me, remarks on my weight loss. "Good for you!" She says, brightly.

I don't respond. I'm curious why she mentioned it at all, it's only a few pounds. I don't tell her that I only weigh less because I have less muscle than I've ever had before.

I do tell her, once we're both settled in the tiny white examination room, that's it's been frustrating to feel continuously awful when I live such a healthy lifestyle. "It's been tough on me and tough on my marriage- I've only been married four months." She nods her head and waits. "I'm trying- I see a chiropractor, and an acupuncturist, and I mean, I don't even drink alcohol anymore! That's how healthy I am!"

"Oh- then have a beer!" The nurse says, waving her wrist as if to say, well that's an easy fix! "Nothing wrong with that, I drink a beer every day!"

"Oh, it's not by choice," I explain. "I'm allergic to alcohol. Alcohol and chocolate. And fruit."

The nurse widens her eyes and lets her jaw drop, an exaggerated pose of horror. Then she leans in and whispers, conspiratorially, "I would kill myself."

This is, of course, the moment where I should gently inform her that perhaps, with future patients, she might choose her words a bit more delicately, remind her that many people who chronic illnesses do indeed kill themselves, or at least live with the idea as a permanent, morbid fixture in their thoughts. Not me, I'm not that sick. But many.

But I don't. I don't say anything, just study her for a moment and move on. "Well, I've gotten used to the diet. But not being able to exercise when it flairs up, that's what's really tough on me."

"It's a good thing you don't have to exercise," she says, turning back towards the computer.

"What?" I'm missing something. "What do you mean?"

"Well honey, look at you. You're in good shape. For people in good shape, like you? They don't have to exercise. It's not so important."

I lean back, exhale slowly. "I think I should see the doctor now," I say, and close my eyes.
David, my husband of four months, comes home from work one day after I had a particularly sedentary weekend. He's hiding something behind his back. I'm in my room, rearranging a drawer, avoiding work. "This week is treat week," he announces. "I'm going to bring you a treat every day." Then, with a flourish, he presents me with a delicate white and purple potted orchid. I look at the flower, look up at him, at his perfectly familiar face.

For a moment he looks shy. He traces a finger around the ghostly thin white petals. "You're supposed to feed it an ice cube of water once a week."

I keep the orchid on my bedside table, next to the two succulents we bought to replace the first succulent, which lived outside and melted. We figured two would be happier than one.

In the week that follows, David brings me something new every day. A tiny carton of salted carmel ice cream, a carmel apple. He makes french toast waffles and brings them to me in bed so I can eat them, turn my head, and fall back to sleep.

One day, he drives me out to Hickory Nut Gap Farm so we can visit the pumpkin patch, some inane, little-kid outing I've been wanting to do all season.  There was nobody around in the field, so we stopped in at the farm store. It smelled like woodsmoke and roasting meat and cold mornings inside the store, exactly like my house in Vermont. I felt a wave of homesickness wash over me, and then another wave of guilt for feeling homesick. "We'd like to go to the pumpkin patch," Dave announces to the young girl standing behind the counter.

"You don't want to do that," she says. "It costs six bucks per person, and it's not really a pumpkin patch. It's just pumpkins in a field."

So we go outside, and pick a pumpkin from a pile that's been laid out by the shed. A woman approaches and asks if I would take a picture of her with her husband and their toddler, who has red hair and marble blue eyes. David pats my shoulder. After they leave, I take a picture of him and the dog, smiling in a sea of bright orange. I love them so much.
Every morning I go to the forest at Richmond Hill and I walk for three miles, sometimes five, on an intricate network of narrow, looping trails. The trees are either shockingly yellow, not gold but bright yellow, or completely bare. I listen to audiobooks or podcasts as I walk, or talk on the phone to my best friend, the girl in Seattle whose life took a serious unexpected turn in the last few months. Together, we try and grapple with her new reality which is, for the moment, a stark one. We haven't figured it out once, but we keep talking. Once every day.
There's a bakery down the street from my house that I've taken to writing in every afternoon. It's busy, and cheerful, almost chaotically loud at times when the great groups of friends that gather around the tables (magically, in the middle of the day, how is is possible to have so many friends in the middle of a week day?) raise their voices to be heard above the hiss of the milk steamer. 

It's especially nice to work there when it rains. It's been raining a lot lately, the sky dark and lit with diffused light, the puzzling type of light that doesn't seem to make the world any brighter. The clouds feels very close when it's like that, more like a ceiling than a sky.

I particularly likes that this bakery has stacks of a magazine that currently features an article of mine. I love that I'm simultaneously inside the magazine and watching other people leaf through its pages as I'm waiting to order.

I've been writing a lot, nothing poetic or personal or profound (not that it would be, when I see writers try their damnedest to say something elaborately profound I immediately set the book back on the shelf, most of the time) but articles for work, easy but time consuming.

Well, they're not exactly easy, I shouldn't say that. But they're not impossible either, the way some things feel, which is a good start.
join us on Instagram @melinadream
And now for the winner of Mystery Prize Monday. Thank you all for your patience over the last few weeks! I am sorry it's taken me this long.

Blogger Marie said...
I'm in a happy place, feeling as if finally, my ship is coming in. But, scared at the same time, because one never knows this for sure, but one day at a time. Hoping this is it for me.
October 20, 2015 at 10:46 AM
Congratulations Marie! We are so happy that your ship is coming in, what a great feeling. Now you can expect a ship, and mystery prize in your mail box. Just email, and we'll get you all squared away.

As always, everyone- thank you. See ya. Soon.

Monday, October 19, 2015

A chemical love, but a love all the same // mystery prize monday

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Well this will be fast and informal. I have two deadlines fast approaching, and I'm catching up on thank you cards, mystery prizes and sea glass necklaces to those of you who donated. I did not want to post again until I've dropped the last of those in the mail. However! I realized that with the most recent post, I may have leaving you hanging just a bit.

It's been two months since I've had any alcohol, and I miss it less than I thought I would, although the release of Highland Brewery's Cold Mountain Ale might be a tough evening to get through. It's been three weeks since my last tomato.  It's been four weeks since I've had any fruit except pears. It's been four weeks since I've had anything to drink besides pear juice.

Except Coffee. Every day I drink a Trader Joe's sample cup of coffee and as a result, I've fallen in love with Trader Joe's. Their ridiculous gourds, their collection of orchids. All those cheerful team members. It's an artificial, chemical-based love, but it's love all the same.

I tried to stop drinking coffee completely and I my brain stopped. It was during those days of rain we got a few weeks back, when the hurricane veered south but we caught the fringe. I sat at the computer and wept because I couldn't write without my brain, and alright, I could live without writing, I've never claimed otherwise, but who would tell the good people of Western North Carolina where to find their 10 spookiest halloween adventures?
It was Kelli who saved me, mother of the coffee-drinking Chihuahua, of all people. She scraped me off the couch, she buckled me safely into her Subaru and drove me to the grocery store. She administered a sample cup of coffee (she is a nurse, after all) we bought Mums, and suddenly I felt cheerful again. "My god," I said, the caffeine lighting me up like a Christmas Tree. (God help me should I ever become addicted to something stronger.) "It's like I'm seeing this grocery store for the first time. It's so colorful. Look! A baby holding a carrot!"

Kelli said, "Yes, dear." As if she were my husband of fourty five years. "Yes dear."

Since then I have returned to Trader Joe's every day for my daily swallow, and before you judge me too much, please understand that I always make a purchase. Some days it is a 19 cent banana. Or a white and orange striped 'lil tiger' mini pumpkin.

It's completely disconcerting but until someone comes up with a better plan, I'm sticking with it.

I fired my IC specialist. She was not special. She was not good for me. That felt good.

I saw an acupuncturist the same day I fired my specialist. She spent two hours just listening to me. She nodded at the end and she said, "This all makes sense."

Then I flew home to Vermont.
Sometimes when you're stuck in a cycle of chronic pain, you have to change the scene. Something has to change and you've tried everything else. I'm 30 years old and I went home to my parents house. I took walks with my mom around our land. It was a late foliage this year in Vermont, almost as if it were waiting for me. I arrived at the peak and all week watched bright gold leaves glitter down from the trees onto the dirt road. It was like walking through a music box.

I wrote my articles during the day and in the evenings I watched Veep with my mom and dad. Then I would fall asleep.
Some of my good friends from Seattle just happened to be visiting Vermont to see the leaves, and we hiked to the top of Deers Leap in Killington. I didn't feel any pain on that hike. I was very cautious, moving slowly, as if I were glazed head to toe in a very thin egg shell. I moved like that for five days. On the flight home I sat in my seat still as a statue, like those people who were frozen in ash after Pompeii erupted. I was a fly suspended in amber, the amber being the complete disbelief that I felt such relief after 3 months of agony.

I've been back in Asheville for a week and the pain has not returned. I'm not cautious any more, not because I don't think it will come back, but because I know it will, eventually. So for now, I find myself filled with a raging, howling sort of energy. The other morning, Dave watched quietly as I ran sprints through our tiny kitchen, touching one wall and then the other before I disappeared into the shower. A few minutes later he watched me devour a stack of his famous Egg Dipped Frozen Pumpkin Waffles (they're amazing) and he said, "Someone's feeling good today."

It's like this. You've been maybe a little bit bedridden, and then one day you're up out of bed, and you're very very very behind! And you must work very hard to catch up. And that's where I am.

Where are you?

That is our mystery prize monday question. Where are you? And I don't mean your physical location. I am not going to say anything else. I know you guys will run with that question in whatever way you need to.
If this is your first Mystery Prize Monday, here's how it works. Leave a comment, and then help yourself to all the other comments that everyone else leaves. We have a good community right here. I'll choose the winner by randomly selecting from within the comments. The winner gets a hand written photo card, and a mystery prize package delivered right to their mailbox.

As always, I can't wait to hear what you have to say. I can't wait to know where you are. I've really grown to love you. 

Sunday, October 4, 2015

Life on Mars

I'm going to tell you something: for the first time in seven years I have no idea how to do this. I've wandered into alien territory, the isolated, wizened, unrecognizable, sun-deviled, starless landscape of chronic pain. It's like Mars here. I'd rather be on Earth.

BUMMER. It's all I got right now! Those two words- Chronic and Pain, are two of the most dismal words imaginable, and who gets psyched up about going over for a potluck at The Dismals? Nobody!

When my good friends go through bad times- and I mean bad times, periods of life when the nobility of the soul is put through the spin cycle- I always give them the same sing-song advice: take notes. I give them other advice too, although I'm learning (in tiny increments) that the best thing to do, always, is to hold off on the advice and just listen- attentively and without interruption- until advice is explicitly sought. (When trying to achieve this, I try to picture myself as nothing but an enormous human ear on the end of the phone line, or settled into the cafe chair or perched on a bar stool. I find the visual helpful.)

Take notes I say! One day soon, although you can't see it and can barely dream of it, such is the nature of the beast, you'll be out of this. You'll feel better, and your experience miring through this damp, black tunnel will be of great service to you and to those around you.  Once you've been through the tunnel, and you are familiar with its peculiar and convoluted layout, then you'll be able to run back in and grab others when they need to be rescued.

I took my own advice. "Be your own hero!" Dave told me once, as a joke, when I was very upset that my sandwich from Earthfare had been made without mayo, despite my specific request. "You march in there," he said, holding me by the shoulders, "and you GET that MAYO!"

So I was my own hero, and I took some notes. Here Is What It Feels Like To Be Diagnosed With a Disease or Chronic Pain. I scrawled it across the page, like a sixth grader diligently responding to a writing prompt in Language Arts class.

And let me tell you, ain't nobody want to be reading that. Not me, not you, not anyone.

NOT TAKING FIELD NOTES ON THIS MISSION, I said to myself the next morning as I buried the papers in the recycling bin. But a few hours later, after a walk and one of those Trader Joe's free coffee samples, which I'm allowing myself daily to get my brain up and running again, I felt like I ought to give it another go, this time here on the blog. Write Everything being my (currently very shaky) philosophy. Besides, writing on the blog forces me to be more articulate and purposeful in how I express myself, and so I dug up the papers and tried to drain some of the copious amounts of self-pity out of the words.

Didn't work. So I started over and wrote something super! poppy! Everybody get on the bus we're going for a ride and I brought individual fruit cups for us all!

Needless to say, that was terrible.

I cannot sugar coat my experience thus far in the agonizing world of chronic pain. Even if I could, that would be a huge disservice to the millions of other people here on Mars, the ones that I can't see, but they're with me all the same. Nor have I learned how to artfully express my time here without melodrama or what feels like dismal and purposeless complaint. Seven years into this blog and for the first time, I honestly don't know in which direction to move.

I need a map. I will find myself a map.

I will say though, the 99 tips that you left in the previous post on how to cheer up and take care of yourself when all else fails, reading those felt like somebody had illuminated a string of christmas lights inside the tunnel.  It was as if all of you set up an aid station on this planet, with Gatorade and a stack of nice books to look at. Thank you, it's been enjoyable.

People with chronic pain often are forced to live minute by minute. That's what I've had to do these last few weeks, but by jumping from comment to comment and using them as direct medical directives, your tips have helped me fashion together bright and elaborate sequences of good minutes- even good hours and good afternoons have flown by (By the way, as a group, we really love podcast and drinking hot liquids.)

So, for my thank you, here is this week's Mystery Prize Winner:

Blogger Jamie said...
I am over halfway done my accelerated nursing program and have experienced a wide range of emotions since its start - hopelessness, anxiety, stress, stress, stress, excitement, wonder, etc. One thing that is stressed throughout our education is self care and taking time for ourselves. I have found that beyond exercise, sleep and healthy eating, I try and watch a funny TV show when I'm feeling especially low. Some of my favorites are the Mindy Project, and especially Friends! Anything that makes me laugh out loud by myself usually does the trick!

September 29, 2015 at 5:03 PM
Jamie, taking your advice led to one sublime hour of Friends, season 3, episodes 6, 7 & 8. Thank you for that! Congratulations on being halfway through the ABSN program, which I hear is itself a bit of a dark tunnel at times. Please email and we'll get you all sorted. 

Thank you for commenting, everyone. I love you and I sure needed you this week. See you back here soon.