Friday, April 22, 2016

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, or scroll down to the bottom of the screen and hit the 'see web version' option to make the donate button appear.)

Tuesday, April 19, 2016

You were wrong, doctor.

Please consider helping me fight my battle against Neuroborreliosis. I am five months into one year of intensive and incredibly expensive treatment. Absolutely nothing is covered by insurance and the expenses have become impossible. As a thank you, I will write you a written thank you card in the mail, and ship you a freshly picked, handmade sea-glass necklace if you request one. Please click the yellow donate button on the top right column. And thank you. 
left side bells palsy and eyelid droop, both markers of Chronic Lyme
--(To hear more of my story, listen to my new episode on the Dirtbag Diaries Podcast) --

When the doctor at the urgent clinic in New Hampshire told me that nobody down South would be able to help me, she was more than just bizarre and callously dismissive. She was completely wrong.

A few days after returning to Asheville after thanksgiving, I found myself under the care of a Lyme Literate PA who works under Dr. Jemsek- 'Dr. J' as he's known in the Lyme community.

Perhaps the world's greatest expert on the treatment of chronic Lyme, Jemsek's story is the focus of the documentary "Under Our Skin."  He began treating critically ill chronic lyme patients with intravenous, high dose, long term antibiotics, and these patients who had been offered no hope from decade's worth of doctor, dismissals, misdiagnoses and drugs....were starting to recover. Many of them completely.

The insurance agencies, however, were not keen on expensive, long term antibiotics being doled out to every chronic lyme patient out there. For treating these patients in a manner that was considered outside of normal protocol (although there is no medically accepted or effective protocol for Chronic Lyme) Jemsek lost his medical license for one year.

The patients who had finally found the answer, the doctor, and potentially the cure, had to go without help or treatment for a year as their health continued to deteriorate.

Jemsek is now back in practice, running the Jemsek Specialty Clinic in Washington DC. He continues to treat the most severe cases of Chronic Lyme in the world.

There are only a small handful of medical practitioners that work below this renowned physician, and one of them lives in Asheville, NC and was able to see me three days after I had a positive ELISA test, and then a Western Blot that showed multiple markers of Borrelia Burgdorferi.

I wish to tell that urgent care doctor how wrong she was.

Somebody 'down here' is helping me.

I wish to tell her that next time she comes across a woman sitting on the butcher-paper lined exam table, a woman covered head to toe in livid red spots who can barely use her legs and is begging for help, she might consider saying something other than, "you need deep psychological counseling."

I wish to explain to her that the symptom I was presenting with, an overwhelming experience of being sucked down to the ground as if by centrifuge, one that made walking impossible and lying down a nauseating, stomach-dropping experience is not 'anxiety' at all but a symptom known as mal de debarquement. MDD is a hallmark symptom of late stage, Neuroborreliosis.

Most of all, I wish to tell her exactly what it was that her ignorance cost my husband and I, because it is brutal, and impossibly sad, and we will never fully recover from it.

----please share my this story. The culture of ignorance over the growing pandemic of Lyme Disease is leading to despair, suicide, bankruptcy and suffering for patients and their families---

Tuesday, April 5, 2016

Chill

Please consider helping me fight my battle against Neuroborreliosis. I am five months into one year of intensive and incredibly expensive treatment. Absolutely nothing is covered by insurance and the expenses have become impossible. As a thank you, I will write you a written thank you card in the mail, and ship you a freshly picked, handmade sea-glass necklace if you request one. Please click the yellow donate button on the top right column. And thank you. 

Hello everyone! I'm checking in from White River Junction Vermont where it is currently 4 degrees outside and bluebird skies. So I know it's been a while, but the truth is I've been lucky enough to have a lot of writing work outside this blog. In fact! Some of that work requires that I keep quiet on here and not tell all my stories, so they can be brand new when they show up in the book or the articles.

What's to become of The Wilder Coast? This is nearly eight years worth of writing, most of it so so bad but remember what Ira Glass says: you have to get all the shitty stuff out before you can write something worthwhile. Anyhow, I'm not ready for this space to fade into internet oblivion like that girl who sang the song about Friday.

So many of you started off as readers and then became friends. I love all the comment and discourse, emails and letters and visits- hell, who wouldn't? And I miss you. So I'd like to try something new. I want to write on this blog as if I'm speaking directly to you. That means, it will be casual, imperfect (which is of course in stark contrast with all my other work, which is perfect, totally perfect) and maybe a bit more stream of consciousness.  Although- god, that term makes me cringe. So axe that last one one.

What I'm trying to say is this. I spend all day grinding out words for other projects, banging my head against a wall, and swallowing fistfuls of supplements and pharmaceuticals (not the fun kind) so when I get on this blog I want to just chill. You know? You know.

Let's begin. Hi! How have you been?


Friday, February 12, 2016

Interlude : The Glowery

Please consider helping me fight my battle against Neuroborreliosis. I am five months into one year of intensive and incredibly expensive treatment. Absolutely nothing is covered by insurance and the expenses have become impossible. As a thank you, I will write you a written thank you card in the mail, and ship you a freshly picked, handmade sea-glass necklace if you request one. Please click the yellow donate button on the top right column. And thank you. 

@theglowery
Not long after being diagnosed with Lyme disease, I became very trigger shy when it came to searching the internet. Personal accounts of people living with the disease are pretty spooky, filled with broken marriages, bankruptcy (insurance does not cover treatment for Chronic Lyme) and some pretty extreme suffering. The amount of information is overwhelming but any consensus, from diagnostics to treatment, is vague and hotly contested. The medical community is fiercely divided between those who acknowledge Chronic Lyme and those who do not. Those who acknowledge it are further split on whether or not it can ever be cured.

I needed to find a website or a book that documented all of the different ways that people can live with and recover from Lyme, without scaring the pants off me. I needed it to be glossy, poppy, and sort of fun. Light reading. Easily ingested. I needed this to accompany, not replace, the books (Stephen Buhner's Healing Lyme and Why Can't I Get Better by Richard Horowitz, MD) the forums (Healing Well has an excellent forum on Lyme that I highly recommend) and the websites (International Lyme and Associated Diseases Society, 10,000 others.) Needless to say I didn't find it, so I decided to create it.

I chose Instagram as my platform, because it's as glossy and emotionally lightweight as it comes. Ingesting information one bright square at a time is the electronic equivalent of being spoonfed. The original intent of this account, the glowery  (@theglowery) was to document my own experience with Lyme disease, but not long after creating it, I came to a startling revelation: I'm not the only one who is sick. Woah. And Lyme is not the only misunderstood and disabling disease out there.

In all the research I've been doing about nutrition and alternative forms of medicine, I keep running across these chronic diseases that share a set of symptoms, probable mechanisms and possible treatments as lyme: chronic fatigue syndrome, multiple sclerosis, rheumatoid arthritis, fibromyalgia and lupus, to name some of the hard-hitters. In fact, people suffering with Lyme Disease, which has been called "The Great Imitator," are often misdiagnosed with one (or many) of these conditions.

There is a growing community on social media of people living with invisible illnesses (spoonies), connecting with one another, swapping information and hope and horror stories, documenting the doctors appointments, recipes (the autoimmune paleo protocol is all the rage right now) IVs, acupuncture, oils, exercise plans, mystery rashes, crystal therapy, insurance battles, injections, ultrasounds, juices, herbs...

And a good deal of it could be very useful to anyone who wants to (gain a deeper understanding of chronic illness, develop empathy over sympathy, help a loved one, be a good friend, all that but also) live healthier, feel better, have more energy, and look great. Paradoxically, people living with invisible illness often look very healthy, they have nice thick hair (a result of drinking collagen powder and bone broth) and luminous skin (juicing, essential oils, detox rituals) and are in excellent shape (following a whole foods diet, yoga). In many ways, getting sick forces you to become healthy.

What I mean to say is, what The Glowery is no longer just about me, or about lyme disease. It's also about living healthier, feeling better, having more energy, and looking great. Often, served up with a twist of Lyme.

In the past few days I've received a few questions on the Instagram feed about juicing, recipes and oils. I'm going to post responses here, since typing anything lengthy on IG will make you crazy.
@theglowery

Juicing 101 and Celery Juice 

I invent my own juicing recipes based on whatever specific vegetable or nutrient I want to be consuming in large doses that week. You don't need a recipe for juice: there, I've come clean. Just buy a juicer, cram it full of vegetables, add a little bit of fruit for sweetness, then drink up. But if you're new to juicing, this might be helpful to you.

Celery juice keeps coming up in my research lately, so for the past few weeks I've been drinking a lot of it. Celery is soothing and alkalizing, and it's a nutritional powerhouse, filled with the coveted B vitamins (B1, B2, B6) folic acid, potassium and phosphorus. It's mild, refreshing, and cheap, so it's perfect for creating a high volume of juice, to which you can add smaller quantities of other veggies and herbs.

If you are experiencing mysterious stomach pain or any sort of gastrointestinal issues (if you're treating Lyme with high-dosage antibiotics you may fall into this category) I recommend starting your day with a big glass of straight celery juice. Nothing added. Unless you hate celery, you get used to the taste very quickly. It's very calming, and the trace salts and micronutrients work with the hydrochloric acid in your stomach and aid in digestion all day long. If you're not up for straight celery juice, fair enough. Try one of these recipes:


The Detoxer
1 Bunch of organic celery
1 handful of parsley
1/2 an apple

Hawain Surf 

1 bunch of organic celery
1 whole bunch of romaine lettuce
1 slice of fresh pineapple

The Refresher 
3 Stalks organic celery
1cucumber
1/2 bulb fennel
1/2 an apple

Super Green
3 stalks organic celery
1 cup spinach
1 cup kale
fresh mint leaves
1/2 an apple

Tips:
-Put the ingredients that will be harder to juice, such as parsley, mint, and spinach into the juicer first.

-Make sure and juice the leaves as well, they contain a high dose of vitamin A

-Juice is quickly digested and the nutrients hit your bloodstream very quickly....as does the sugar. It's easy to ingest a lot of sugar without realizing it, so be as sparing as you can with the fruit. Begin with what's listed here and then reduce as you get used to the 'green' taste.

-I use this centrifuge juicer. It's worked great for years, but when I eventually buy a new one, I'll invest in a Masticating Juicer (sounds dirty.) It's much more expensive, but it's more efficient at juicing leafy greens, and the nutritional integrity of your juice lasts longer, so you can make one batch and keep it in the fridge.

-If you use a centrifuge juicer, drink the juice immediately.

@theglowery




Wednesday, February 10, 2016

Circadian Interruption

Please consider helping me fight my battle against Neuroborreliosis. I am five months into one year of intensive and incredibly expensive treatment. Absolutely nothing is covered by insurance and the expenses have become impossible. As a thank you, I will write you a written thank you card in the mail, and ship you a freshly picked, handmade sea-glass necklace if you request one. Please click the yellow donate button on the top right column. And thank you. 

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 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 Burgdorferi (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 float 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.