Folly Beach

this post is written in gratitude to Teal Emyln, who has shown me such warmth, love, and art.

Over the course of the past year, I haven't given much thought as to whether or not the people in my life, from the readers of this blog to my closest friends, have believed -for lack of a better word-just how sick Lyme Disease has made me. The pain, fatigue and insomnia are so vicious and destructive when they swell that to even consider having to validate them to others is a ridiculous notion. 

I know people who have struggled intensely with this issue, their level of disability and despair are challenged by the very people who should be providing them with the warmest care and most tender support. 

I've managed to escape, for the most part, this particular callousness, but there will always be those whose judgement can never be avoided. If you post pictures of yourself from inside the deepest of gloom, hospital gowns, oxygen tubes, the rumpled self portrait of the third consecutive day in bed, pale skin, dark eye circles and sweat- then you're asking for pity, stuck in a self-perpetuating cycle of negativity and inactivity, driving yourself towards decay with full compliance. Just get out of the house, go for a walk, you'll feel better! 

But when you project instead the image of all the things you still can do, standing in the sunlight, happy and at ease, color in your face and your hair is wet, eating at a restaurant with a friend or sitting with your back against a tree in the middle of a forest, good heavens, even exercising- then you're not so sick, are you? We knew it. 

I won't go any further into it, because the last thing I want to do is set an example for other Lyme sufferers that they should ever have to feel the need to validate the new world that this illness has created for them, and all the outrage, pain and struggle that can exist inside of it. But I am becoming curious as to how my story, which has been stretching on now for over a year, is being perceived. 

More specifically, I wonder how I - the old me, pre-illness- would feel reading this story if it were about someone else. Every week I meet with one or two Lyme patients, and through hearing their experiences, as well as certain excruciating moments of my own, I have been exposed to a level of suffering that the old me simply could not have understood.

 I can see the old me growing frustrated with the character on this blog, the girl who keeps assuring everyone she's getting better and yet she's still not in remission, she still cannot work full time, still has no children, why isn't she working just a little harder? Her words are becoming monotonous, sometimes even inconsistent. What could she possibly be doing with her time? She must not truly want to be healthy. At this point, this has to be of her own making. 

Are these the type of thoughts that would be running through my mind if I were to have read this just two years ago? I think yes, although it's painful to admit that. I've had similar notions in the past towards others whose pain completely outside my realm of understanding, whose misfortunes seemed endless, although I would never have had the indecency to question, blame, or accuse them directly. 

I have a friend with a similar strain of Borrelia as I do. She is quick witted and funny, curious and smart and proactive. Recent photos show her laughing on a dock that stretches into a foggy lake in the early morning, cuddling a baby nephew at a birthday party with a look of dreamy contentment on her face. Yet she sleeps every night with a razor on her bedside table, the idea that she could choose to escape the pain and indignities of her illness being the most comforting thought to her, so soothing that it is what puts her to sleep. That is the maddening and nearly incomprehensible juxtaposition of invisible illness, and it makes sense to me if you do not understand. Two years ago, I certainly would not have understood.  

These photos are from a two day trip last week to Folly Beach outside of Charleston, South Carolina. Whitney had been spending some time on the ocean after a wedding, and was feeling so renewed and healthy being so close to the water that she invited me down for a mini Lyme retreat. The past week I've been on an antibiotic "holiday"as directed by my doctor, hoping that my immune system will kick into action and do some work on its own. These holidays are not holidays at all, it was a week of extreme fatigue and spasms and a pounding heart. You may have even seen me up on Haywood Avenue, sitting down on the sidewalk every few yards as I try and walk the dog. The five hour trip to Folly Beach sounded daunting, but I knew that water and sun and a change of scenery would be a real benefit to my health overall. 

We had a wonderful few days, but you probably would not have wanted to come along. Whitney's health began to crash when I arrived, and despite the slow improvement in my strength and energy that accompanied the joy of being on the ocean, I still couldn't venture more than a few minutes out of the beach house. We went swimming in the salty, sun warmed Atlantic, relishing the power of the waves crashing over our heads, and then laid down in the house with the shades drawn for an hour. Another excursion, this time to a local park on an estuary, but it was too hot and there was no shade- we paid the entrance fee but we had to leave. 

The trip was not without triumphs. On the advice of one of my readers, we found our way to the enormous, ancient "Angel Oak" on Johns Island. We found a farmers market with a cooling breeze and a Venezuelan food truck, we both slept well from the intense heat of the day, we ate Cuban Food outside in a rain storm and enjoyed one another's company immensely. I was able to return to the state park in the evening, when it was overcast. On the third day we had planned to venture into Charleston to explore a local homeware store I was interested in, and stroll down Broad Street, but instead we drove home. We were both crashing quickly, and what a luxury it was to not feel guilt about ending a trip early. 

I treasure these trips with Whitney, feeling such a close and almost cozy kinship with her. But the illness flared viciously for both of us upon returning home. This week, I gratefully began what should be my final, four month long protocol with the addition of Rifabutin, a brand new antibiotic for me. As soon as I was back on the killing drugs, I felt better, lighter and stronger. I am doing the work. I am doing all of the work. I want to be healthy again more than I've wanted anything else in my life- but then again, you understand that.  

Catch up on the Lyme Disease Story by clicking here
Thank you for helping me afford this treatment, which is not covered by insurance. 

Melina's Lyme Ninja Radio Podcast

How about a listen today instead of a read? Check out my brand new episode of Lyme Ninja Radio. This podcast has been a huge source of comfort and information, I've listened to every episode! I hope you enjoy and are able to glean something helpful from mine. Always feel free to contact me by leaving a comment here, or emailing me: thewildercoast@gmail.com

Final Stages

This post is written especially for Gayley and her kindness. Gayley, there is something very special in the mail for you!

Mid August, and we are beginning to detect a change in seasons as summer rolls into its final stages. The heat and humidity of the day are still too much for me, especially since I'm burning up on the inside with a fever that ebbs and rages but never quite leaves me completely, but long afternoon rain showers are becoming more common, the evenings fall earlier and bring with them a drop in temperature. Before bed we open all the windows and turn the fans on, and the house takes a deep breath as the air starts moving through.

I can not remember ever being so enthralled with the seasons turning, not even in Vermont where the shift from summer to fall is so sharp and vibrant. I have never wanted, or needed, time to pass as quickly as I do now. Every day that passes takes me one step farther from the past winter and spring, which, looking back on it, feel like nothing but a fog of fear of despair.

These days- in their sameness and their routine of pills, chores, rest, walks- blend together, and on the days where it seems like I am not recovering, the very essence of time starts to blur. Doesn't there have to be change in order for there to be time? Maybe not. I don't know. But then in the midst of such questions I'll see an advertisement in the paper for Halloween decorations and it reminds me that things are moving forward, however slowly, however strangely.

Whoever designed that particular advertisement and arranged it in the right hand corner of the Mountain Times had no idea that a girl, sitting at the breakfast table one morning, scratching the dog with her foot, would find such triumph in reading it. That she would stand up and exclaim, "I KNEW IT!" then march it over to the bedroom where her husband was still waking up and say, "You see? This summer will end! It should be over soon!"

Not that it's been a terrible summer, not at all. I listen to a podcast called Lyme Voice where on each episode they discuss their "Fight Heal Live" mindset. I believe that I spent the past three seasons Fighting, and somewhere back in June I transitioned over to Healing. I can't wait until this is all behind us and I'm back to Living, but healing is a breeze compared to fighting.

Fighting was fear and convulsions and herxing and tremors, fearing food and telling my husband I was ready to give up and crawl back home to my childhood bed in the upstairs of my parents' house. Fighting also meant taking my medicine at exactly the right time every singe day, spending hours each night researching and taking notes, weekly acupuncture and therapy and daily PEMF treatment, salt baths, saunas and screaming and conjuring an enormous amount of strength and courage just to get out of bed every morning.

I wouldn't describe my summer as anything like that. Now I sit across from Whitney at the cafe and compare symptoms the way two mothers might compare the behavior of their two year olds. We roll our eyes and pay half attention- what's new this week? I'm sure this stage won't last too long, what else is new?

Yesterday I even forgot to take the Killing Medicine in the evening, which was not good, but it meant that my illness was not the first thing on my mind. Dave and I were at the YMCA swimming leapfrog laps, which means we swim under one another like leapfrog (four whole laps!) and we were having the greatest time, when we got home it was almost 10pm and after taking the dog for a walk we went straight to bed. In all the normalcy I forgot to swallow my Omnicef, Cipro and Mepron, it was fantastic. And it set me back one whole day.

I went to see a regular doctor the other day, not a Lyme specialist, and he frowned and appeared quite concerned about all of my enlarged lymph nodes. If my CBC was off just a little bit, he told me, he'd send me to the hematologist. I left that office shaking and light headed with fear and frustration- I'm so tired of this! Every time my phone rang for a week I'd jump out of my seat but it was always something innocuous- the computer store, the North Carolina Democratic party, a wrong number. Eventually the results came by mail, everything is normal. The doctor called later that day with a follow up. "Who knows," he said. "With Lyme, all bets are off."

My LLMD, June, told me my last visit that she's thrilled with my overall progress. In two weeks she's starting me on a four month course of Rifabutin, Minocycline and more Cipro and after that- I don't mean to jinx anything here, but I could transition to a year of maintenance antibiotics, which sounds like a walk in the park compared to this past year.

 One thing she made clear, however, is that because of my personality, I'm at a big risk for "Blowing it." Those are her words. David agrees with that wholeheartedly. He sees me wanting to take on more and more as I start to feel better- more writing assignments, bigger excursions away from the house, more exercise. We've agreed that traveling to New Hampshire for alternative treatment at a Lyme Clinic in September, a couple of low-stress articles for Roots Rated and a low residency course in positive psychology coaching that I'm starting in October along with Whitney should be more than enough. I'll travel home for Christmas but no trips besides that.

Other than that, it's just more of the same. Finding waterfalls to swim beneath, writing thank you letters, swallowing a handful of medicine each night to get to sleep, listening to podcasts as I do the dishes, trying to speed up time with my mind, keeping a tally of every clue that autumn is almost upon us, trying not to blow it.

Thank you all so much.
Click here to see my Lyme story from the beginning. 

We're not dead, Evelyn

This post is written in gratitude to Kelly Koetsier and his family, who have been a beacon of light in the form of sanded Burl.

Whitney and I have made good on our promise to get each other out of the house as we start to feel better. It's been a beautiful summer here in Western North Carolina and we are grateful for every day that we get to wake up and enjoy it. 

I saw June the other day, my Lyme doctor, and we agreed that since I was still running fevers and experiencing severe dyspnea, it would be unwise to continue with the treatment plan we'd come with a few months prior. 

I thought that after five month-long rounds of a complex protocol targeting Babesia, a co-infection similar to malaria, I would be free of that disease and ready to roll on. Instead, June wrote me yet another rounds of script for Omnicef, Septra, Mepron, Flaygl and Diflucan. I told her I couldn't do the Coartem tablets anymore, not if there was any possible way to avoid them. There are only so many times my husband can find me lying on the kitchen floor, too nauseated to even explain to him why I'm down there. June agreed. No more Coartem.

Just last Tuesday the temperature mercifully dropped a few degrees into the mid-80's. Whitney and I took that as a sign that we ought to take one of the field trips we'd been dreaming up. We spent the morning picking blackberries at Hickory Nut Gap Farm and feeling remarkably healthy out there under the afternoon haze. We had the thickets alone until the last fifteen minutes when a pair of middle-aged ladies suddenly appeared. One of them must have overheard Whitney and I talking, because out of nowhere she popped up behind a bush and said, "You girls here about the 5,000 year old man they found perfectly preserved?"

Whitney and I looked at one another. We shook our heads. 

"They found a spirochete in him, too!" She exclaimed, fanning her face as if she was on the verge of fainting. "I certainly hope you girls were tested for co-infections, because there's one....eurlich- eurlichia? I can't pronounce it but it'll kill you in three days."

"Stop it, Evelyn!" Her friend piped up, straightening up from the row behind her. "They're obviously not dead." 

That's right, Evelyn, we're not dead and we're lucky. In fact there are moments that come and go when I feel better than I have in years, owing to the fact that the mere absence of pain still makes me feel like I'm floating on the Dead Sea- weightless and soothed. I wonder what it would take to be able to hold onto that feeling, even as I continue to get better and this all fades away behind me, that even something as mundane as walking across a parking lot to reach the drug store is a miracle. 

After the berry picking we floated down the road to a farm stand that accompanied a field of pick your own wildflowers. There was nobody around, just a bucket to put your money and rows of produce in foggy glass bins. 

Whitney and I like to talk about the future, our upcoming treatment at a Lyme clinic in New Hampshire and a positive psychology coaching class that's starting in October. Something about hour we passed inside the long, quiet rows of bright zinnias, however, made us feel safe enough to bring up a little of the trauma from the past year. 

"I used to wail." I said. "All January I just cried and wailed, I didn't even sound human." 

Whitney nodded. "I had those days. My boyfriend would say, 'This can't go on like this. This can't go on like this."

It's taken a lot of hard work to get where we are, a place that June assures me is "halfway there" although it feels much farther than that. I've only had one new symptom lately- an intense pain that wanders up and down my right leg, and then the muscles of both legs will suddenly seize and become rock hard. This happened to me at the farmers market down the street the other day and I fell forward onto a booth, narrowly missing crushing about two dozen fresh eggs and startling the farmer. I picked myself up, brushed myself off and told him I must have tripped on something. 

Every day as I take my medicine in the morning, I hold my breath and pray that the heart pounding and the dyspnea do not return. At a recent Lyme event that I co-hosted, an older woman cupped my face with her hands and told me urgently, "You will never get rid of the Borrelia. Ever! It's with you for life. But the co-infections: you can kill them. You can eradicate them- be diligent! Promise me!"

I promised her so I could have my face back, but it was her voice that I heard in my head when I agreed with June to do one more round of anti-malarials, just to be thorough. So far, besides a fever of around 99.9 that emerges about an hour after I take my medicine, I haven't seen any evidence of a Herxeimer reaction, which means there is less and less Babesia left to kill in my red blood cells. My body is burning it off from the inside out.

Four pounds of blackberries yielded five half-pints of spiced jam sweetened with honey. I've taken up canning and preserving as a way of keeping busy inside the house, where it's cooler and I can quiet and calm and alone. By the time I filled up one whole cabinet with over 20 jars of preserves, however, I realized I'd discovered something that I truly love to do.

I wish I could say I loved going to museums and art galleries and movies, as it would certainly make me a more well-rounded individual, but I generally can't find the interest. David and I both have short attention spans and endless reserves of energy when we're healthy, and what we lack in creativity when it comes to entertaining ourselves around town we make up in a genuine delight in exploring in the wilderness. Besides for reading and straightening up the house, I'm not quite sure what to do with myself when I'm inside. At times, these past six months of being quasi-housebound felt like they were killing me, although in reality they were doing just the opposite.

Now that I'm putting up food, I've found a way to pass the days in a happy and satisfying manner while still reserving most of my energy to fight off the diseases. David comes home in the evenings and finds me on my feet in a cloud of steam, the kitchen splattered floor to ceiling in boiled raspberries, or I crawl into our bed hours after he's gone to sleep because I've been waiting on the boiling water bath for the tomato sauce, and I can see him start to soften around the edges, begin to let go of the fear that this might never end and have faith that after so many dark moments the two of us might make it out of this thing together. 

Thank you for helping me to win this battle against Neuroborreliosis. Here is how to help, and here is how I am saying thank you.