Saturday, May 28, 2016

Fun Friday Flip Out #2

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.

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.

Thursday, May 26, 2016

go hide and be brave

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.

Tuesday, May 24, 2016

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.

Friday, May 20, 2016

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: 



Wednesday, May 18, 2016

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.