Lyme Diaries – The Only Thing to Fear is Fear Itself

Kathleen Bowman is a person who lives in our small community up here in Downeast Maine, and a few years ago, she saved my life.

A few weeks ago, she and her husband came into the gallery with some friends who were staying with them. I didn’t say hi at first as I was talking to one of the friends who was gazing out the back of the gallery at the garden; there is a beautiful, luscious garden of hostas and rhododendrons and a small pond out the back of the gallery, and it is mesmerizing. He said, “do you know my friend Kathleen?” I said and smiled, “Kathleen saved my life”. He looked at me, quizzically, and we walked to go and say hi.

Since Wednesday of last week, I have been experiencing crazy edema in my legs and an increasing sense of pain in my back and abdomen, coupled with digestive troubles. It feels as if my whole system has become locked up and like it is stopped. It is a disconcerting and painful feeling. The swelling of my legs is scarier still, and makes walking uncomfortable. It also reminds me of a very scary time in my life when this happened before, when I was 18 years old, during my senior year of high school. At the time, for months, I hid the edema under the baggie pants that were customary in the late 90s. I loosened the shoelaces in my Vans to accommodate swollen feet. In Creative Writing class, I sat on the couch under the classroom’s tiny windows. I loved that class, obviously. One day, my teacher crouched down near me to help me and friends with something, and she noticed my swollen ankles under my pants and she asked me about them and how long they had been like that. I said I didn’t know and she asked a friend to walk me to the nurse. The nurse asked me the same question, and I said a few months. (Why? I was asked a lot during that time. I was afraid I was dying, and I was a sad and lonely child, and thought maybe it was better if I just did that, quietly). My mom came to get me and I went to the doctor and they admitted me to the hospital with a blood count of 1.7 (normal is 7). I spent the next two or three days in the hospital, and it was one of the most lonely times of my whole life.

I know my mom dropped me off at the hospital; she must have. But I was alone at night, and the doctors were assholes because I was (probably) a teenage asshole to them. I watched “Boogie Nights” and didn’t sleep and wondered if I was going to die in there by myself. I was on oxygen, which was great because I could actually breathe for the first time in a while, but thought to myself, over and over, “this isn’t good”. Some friends came, but the best ones didn’t, as it was too scary. It was too scary.

When the edema showed up last week, immediately I became scared; scared of what was happening, scared of the lack of answers, scared of the fact that this entire month I have just progressed into feeling worse rather than better, and scared of having to go to the hospital. My doctor told me on Friday that she wants me to go to Bangor Hospital and not MDI because it is bigger and has more resources. Immediately I was sent into an emotional tailspin that lasted until tonight, when I caught the truth on the wind and spotted the rise of a crescent moon that I could wish upon. I wished for it to help me alleviate my own suffering; my fear of being alone in a hospital at night. At the moment when I realized it, I realized how scared my younger self was all the time, and I remembered when Kathleen saved my life.

Kathleen is an energy worker of a sort; I can’t really tell you what she does exactly. She “tunes in”, she says, and then pictures show up in your head and she asks you to describe them. Sometimes you lie on her massage table and she does something Reiki-like that isn’t Reiki, moving her hands above your body. Over time, I began to trust Kathleen, and then one day it all came clear; the young version of myself, trapped in a cold cave that was made of stone. After a while, she was coaxed to come out of the cave, and the older version of myself was standing there, tall as anything, with a cloak or wings on, or both, and wrapped her in a hug and told her she was safe and could stay out. Tonight, on the driveway, under the moon rise, I remembered that moment, and sighed and cried at my littler self, the one who was so scared and alone a lot of the time. She didn’t deserve it, and she was just a child, and also, she doesn’t need to drive the bus anymore.

All of a sudden, I knew I would be ok and I just have to figure out how to be. I smiled at the moon and thanked her for always being there, right where I need her to be. I felt relief and that a 100-lb weight had been lifted. Now, my stomach is still killing me and my legs are still swollen, but I know I won’t be swallowed up in fear.

I have been in family therapy for the last few months with my mother and brother, and I have learned to appreciate my mom a lot more than I ever have done, but I have also learned that things were more messed up than maybe I realized. I was, after all, only seeing it from my perspective. Now I see things from my brother’s and my mom’s perspective, too. So even though I felt alone and scared so much as a child, I don’t think it was anything intentional on the part of my parents. My dad was actively seeking to maintain a series of delusional stories that covered up hard truths, and my mom was running around behind him, cleaning up. Tonight our therapist asked her why she did that for so long, and my mom said she was in survival mode until she started her career as a realtor. Our therapist asked, then, a harder question, which was “do you think you were really in survival mode the whole time, up until the point when he died?”. Hard truths. How can you parent your children when you are just trying to survive yourself?

Deep thoughts on a dark night. Everyone has told me that Lyme teaches you lessons, and that part of the disease is figuring that out. I learned tonight that I don’t need to be afraid of being alone in a hospital, breathing oxygen, watching bad tv, and being afraid of dying. When we all took care of Mary Ann, we never left her alone. We watched stupid tv and put on makeup and played with Instagram filters and listened to Tupac at 5am when the morning nurses came in. We took copious notes about treatment and laughed as much as we could and made the couch look like a hospital bed so we could be close together and giggle. That’s how my hospital stay will be, if there is one. If I am to die, and we all will, I won’t be alone. I will be surrounded by people who I love and who love me.

What a gift, what lightness. Let’s not stress when there is so much beauty in the world.

Lyme Diaries – Hot Showers & Tummy Aches

I started having symptoms of what I thought was anaplasmosis on Tuesday, June 24th: my half birthday, no less. Turns out it was anaplasmosis and Lyme disease, and I have had a stomachache since that day, every day, without fail. It is becoming frustrating and demoralizing. A monthlong stomachache!

In good news, I followed my doctor’s advice and started to use heat to help with pain and have been taking very, very hot showers. Almost immediately they stop the nerve pain, as if my body gets distracted by the heat from the pain and all the attention goes to it observing, “wow it is hot and that feels good!”.

I woke up at 4am this morning with a stomachache. I also have edema, as of two days ago, which either means the bacteria is causing it, or one of the medicines I am on is causing it. I tried and failed to not take any pain medicine last night, even though I have to say that the pain is much better than it has been.

This is a journey, and a difficult one at that. No one seems to know much and every time I ask they all say, “everyone is different?” and while logically, biologically, I understand that, it is a very annoying thing to say to someone who is just looking for answers as to why her stomach has hurt every day for a month, and why now her legs are swelling so much that squatting down is uncomfortable and feels like I am wearing a pair of tight pants.

My doctor also told me to keep a positive attitude so here goes:

  1. Super thankful for Cody cooking dinner last night. We made polish sausage and cabbage and I wonder if the cabbage has made my tummy upset. But it was so delicious and our first cabbage from the garden!
  2. Super thankful for my devoted doggo, Oscar. He never leaves my side.
  3. Super thankful for my cute and sweet and not stressful job. I could not teach and go through this at the same time, no way.
  4. Maine summer and the garden, even though I can’t go in the sun.
  5. Flowers! Stars! Winds of change! All of the natural processes that go on around me while I wonder when this will feel better.

It is now 5:58 and I am wondering if it is worth it to try to go back to bed, but my stomach says no. I hope you’re well out there and helping me ideate a tiny bazooka for all the ticks.

Lyme Diaries – Weird Thoughts

This is my fourth week of antibiotics for Lyme disease. It appears that I have chronic Lyme and may have had an infection years ago, or months ago, or who knows, that is now flaring up with all sorts of weird symptoms.

One of the big ones is appetite related. My stomach hurts almost all the time, and so I don’t want to eat. Not wanting to eat oversimplifies the feeling; I think my body is telling me not to eat because I feel so sick. But if I tell it no, and eat food, I feel better.

Here we are in the mind-fuck part of Lyme disease: it is like it is trying to trick you into doing things that aren’t good for you. I know that other diseases and conditions can do this, so it isn’t a huge surprise but also — it is? How can this be caused by a tiny spirochete bacteria named Borellia bugdorferi?

Right now I am drinking water with a splash of bitters in it. It is late on a summer night. My back hurts alot but I am hoping a hot shower will help (learned that trick last night). I am trying to not take anti-nausea medicine as it really messes up my digestion, which is already messed up thanks to antibiotics (doxycycline). My solution? Keep taking the Doxy and start to carve small, life-sized charms of Doxy pills. You gotta laugh.

My husband and I are having issues as he can’t do anything about my illness and so is becoming irritated at its longevity. I keep telling him that it bothers me (probably) more than him, but … I just don’t have any energy for anyone even myself right now, and for that, I feel very bad. I feel that it is a major accomplishment that I get an outfit together (with jewelry!), get some food together and get to work. I also feel accomplished that I am able to fake it at work every day, sort of; I am able to maintain and get things done. I hate to feel this selfish, but when he gets frustrated with it, I either get frustrated back or just get so tired I just kind of shut down.

The mind fuck of it all. What IS Lyme disease? No one knows. So many people have it. How is that possible. When might there be a vaccine? When did life get so complicated? Is our country changing irrevocably? I lost another friend to pancreatic cancer last week; why isn’t there a screening tool for it when so many people die of it so young? This life is so mysterious and makes less sense the more time I hang out here.

Sending love to you – I hope you are all right. Hang in there, baby.

I love this sweet song – I am not a super Taylor Swift fan (don’t tell anyone!), but this one really struck me today.

Night Pains

It is 4:20am and I am writing because I have been woken up with pain, again; this has happened the last three nights. I am tired, and I am sad, and I miss days without pain like this. And the thing is, I am used to chronic pain. I have had it since I was 18 and was first diagnosed with the autoimmune disease that makes illnesses like Lyme and anaplasmosis and shingles so much worse for me: agammaglobulinemia. The constant, chronic pain that I have learned to live with is in my hips and my hands. But this, this is different. I don’t know exactly how to describe it save it is a burning feeling emanating from the bones of my ribcage, lower back, and abdomen, as if there is something slow burning there, like charcoal. It wakes me up and begs for relief. I took one tylenol and two iibuprofen per instructions, and now I wait, as I took 2 gabapentin before I went to sleep.

The doctor’s assistant told me on Friday the pain could be the pain of the bacterial “die off” which I find gross and rude (on the part of the bacteria). My tummy is distended and I have had a stomach ache now everyday for three weeks. I can’t put any pressure on my stomach at all without feeling a lot of overwhelming pain. I feel terrible about this as it means it is hard to hold my husband’s body at night, and hard for him to hold mine, without causing discomfort. Pain is alienating on top of being sad and frustrating.

This is a short entry, written in the early hours of a Sunday morning. I do not know what to do. I surrender to this, but it does me no good as the surrender is simply because I am lost to this pain and lost to a real solution to it. During the day, I can manage it with medication, but at night, I try to sleep. For the first three weeks, it was like my body turned off at night and so did the pain, but no more. I hope we are reaching the end of this, if not, I am worried that we will have to do something different; more medication, different medication, more impactful drugs than what I want to do.

I said this the other day and still think it today; I am so thankful for modern medicine as if we were in the olden days without antibiotics and pain medication. I would be lost. But then I read that the first case of anaplasmosis was diagnosed in 1993 and wasn’t even fully identified til 2003, so it didn’t even exist in the olden days, thank god. I just googled Lyme disease and it has only been around since 1975 so, big whoop, these diseases are of the modern age! I am sure though there are lots of diseases that are hundreds of years old and are miserable without medication.

I am hoping the meds kick in so I can go back to sleep. This is a sad moment, but hopefully it is just a moment that will pass and I will remember it but not dwell on it.

Tick-Borne Illness Discoveries

Current diagnoses: Lyme disease and anaplasmosis

Current feels: meh? The mornings are usually ok as long as I follow —

Current regimen: Get up, drink water, eat something and take medicine

Current prescriptions: Doxycycline twice per day, Ondanestron/Zofran once per day in the morning, Gabapentin 100mg up to 3 @ 3x day, 1 Advil with 2 Tylenol twice a day, probiotics one hour after Doxy, Grapefruit Seed Extract, Fiber, Chasteberry & Cat’s Claw

Conclusions: Tick illnesses are whack and you have to pay very close attention to them.

I have been suffering from extreme pain, weakness, and fatigue especially over the last 10 days. I started antibiotics 11 days ago, so I should be feeling better but by two days ago, I realized I was getting worse and not better. I called my wonderful doctor and she talked me into taking Gabapentin (“But Maddrey I don’t want to take a whole bunch of drugs dude!”) and it helps, so much. The pain I am feeling is in my upper back, from my shoulders down to the bottom of my rib cage. It is such a strange and specific pain and very intense, like burning beneath the surface of my skin, all through my tissues. I hate it!!! I had shingles about 13 years ago and the fatigue of this reminds of shingles, but this is not shingles.

I have often said about my self that my brain/mind is strong and good, my heart center is good and loving, I am working on my emotional health and my tendency to copy parental patterns of controlling codependent behavior (what a challenge! But I think it is getting better), but my bod! My bod sure likes to get illnesses and I am hoping we can work on that as well. I am not sure why I am so sensitive to illnesses, but here we are.

Signing off to go water plants. xx P

A Tick-Borne Summer

As I listen to my surroundings, I hear the song of many birds, the hum of summer traffic on the road, and the wind moving through the thousands, millions, of trees on our land here in Maine. Every year, later than I would like, the leaves come back to the trees after months of absence. One day, they are tiny speckles of lime green, and the next, there are millions, billions of lime green leaves dancing in the air. Just before that, the birdsong comes back with the birds, and the silence of a wind-whipped winter is over. I love sitting outside in the wind, in the sun, in nature, in this tiny sliver of peace and paradise: a small house, green, with a nice porch, and plants all around.

I started feeling really crummy two Tuesdays ago, but couldn’t place the feelings; was it bad hummus? Had I drunk pond water on my Monday swim when it was so hot and clear the only thing to do was to swim? Or perhaps I had done that on my Tuesday swim, when conditions were similar only cloudy? On Tuesday evening I started to feel like there was a rock in my belly, or a beach ball, or something that was taking up all the space that I usually fill with tasty things like roast chicken or tacos or muffins in the mornings. My belly also became swollen out like a little kid’s. Usually my tummy is fairly flat with its fair share of mid-forties curves and wrinkles. I have been exercising alot on my elliptical and feeling proud of being stronger and my tummy flatter. But no longer. On Tuesday evening I tried to eat dinner as normal but barely ate half of it, saying I didn’t feel super well. I thought: tomorrow will be better.

Wednesday came and went and the stomach trouble became worse: it hurt very much and was very uncomfortable, and with it came this weird back pain across the whole top half of my torso. I had a hard time standing or sitting for long periods of time. If I could lean back, I was ok. If I could lie down, that was better. I was annoyed.

On Thursday I thought I caught the chill of a cool day that followed a few hot ones, but as I drove home from the gallery I recognized the familiar feelings of a fever. By the time I made it home, I was shaking, cold, and feeling rotten. So began my days of spiking 101 degree fevers (high for me as my normal temperature is about 97 degrees), breaking fevers into crazy sweaty messes, and the realization that something was wrong with me.

On Friday I managed to get in with a random doctor who told me that she thought I had a stomach bug that was roaming around. I asked her if she would run a tick panel just in case, and she said yes, so we did. I took the rest of the day to chill out, thinking I might be feeling better til the fever started again.

On Monday, I went to my regular doctor and told her I was worried I had a kidney infection and she said she was worried I had Lyme disease. Luckily, the tick panel was already being processed, and on Tuesday, she called and gave me the gross and terrible news that I have anaplasmosis and Lyme disease, together.

Blech.

She also told me I have to take antibiotics for at least 30 days and they are these fun ones that cause you to sunburn so easily you can’t really be out in it. She apologized for ruining my summer (I blame the tick, personally). And since Monday I have been taking two types of antibiotics, twice a day, and probiotics 1 or 2 hours later. I felt better on Thursday, and then yesterday I felt bad again. Today is Saturday, and I am very tired. I wonder if I am now feeling tired from not eating enough, because one of the things with that stomachache from Hell is that my appetite has gone on vacation. Somewhere good, I hope.

One of the strange emotional responses to these illnesses is that I am determined to not sweat the small stuff. That feels good, like I am doing something right in a situation that I cannot control at all. Anaplasmosis is super scary and can kill you in various ways (spooky!) if not treated early, so I am proud of myself for going to the doctor. So in the vein of not sweating the small stuff, I am trying to be a nicer version of myself, more understanding, and quieter. I am trying to spend time thinking about what I think about the state of the country, but not react to it as much as maybe I have been. I am thinking about the importance of creating art in times of dread and sadness, and trying to be participatory in that process.

The energy level is the challenge. Fatigue is real with Lyme and anaplasmosis. I haven’t felt this fatigue in a long time, but I am not unfamiliar with it; legs made of lead or concrete, not strong, dragging through space. I would like to go swimming or maybe just sit in a lake. Today is hot and I hope to fill up our cowboy pool with the cold, cold well water that comes from deep within the earth. I plan to put it on the leechfield, on top of the septic field; I think it’s mostly harmless to that process going on below. Last year when I filled up a giant pot to dip in on the hottest days, the water was so cold it was shocking! (There are photos to prove it!) This year, I will fill up the stock tank and let it sit for a day or two to warm up before I dunk myself in. Over by the leechfield I have planted lots of medicinal herbs and witchy plants, as MOFGA told me I could plant shallow-rooted perennials. Over there we have hops, madder, weld, motherwort, marshmallow, thyme, yarrow, blue vervain.

Ho hum. One of the good things about having peaceful, slow hobbies is that when you are slow yourself, you can still do them. Today I want to work on jewelry, so I am about to head to the studio to do just that. I am working on a series of rings, and I need to order some materials for a custom project I am working on. One of my recovery plans is to wake up early and write in the mornings, as I have much more energy when I wake up than when the afternoons roll around. By then, I feel quite ploddy, like I am going through mud, mentally and physically. These illnesses don’t make me sad, exactly, just tired and a bit disappointed. I like having lots of energy, high vibrations, and excitement. I am sure those will all come back; I just have to let this ride out.

Current projects are:

1.Working on the second edit of the book and finding all the photos that go into it

2. Power rings of various interesting stones and two pendants for a show in August

3. Finishing the third quilt in a series, photographing the three, and sending them to their destinations. The third one has no home, so I wonder who will claim it?

I am drinking coffee now, still listening to those same sounds but the wind is stronger, the sun higher in the sky, the air is warm and dry. My living room is orange and bright with sunlight. We are on new journeys in this life, new career paths, so much exploration! We asked for an adventure and we got one! Who knows what the future holds, but we have managed to pay for everything so far, and I can only hope the blessings continue and continue to grow. Every night I look at the vast spiderweb of stars and ask them to keep helping us, protecting us, guiding us. The Big Dipper right now is just above the driveway and, every night, reminds me that “my cup runneth over” and ain’t that the truth.

I hope you are well, wherever you are, and if you are not, that you can figure out some ways to make it work while you are sick.

xxP