Getting completely well is harder than I thought. I am so close to the end yet farther away than ever. This is where I should get some kind of power surge, both mental and physical. I am sputtering. No surges here. Instead, my head and body seem united in a small rebellion. Anyone who knows me well has seen how hard I work at getting better. Clean eating (and by clean, I mean no gluten, dairy, sugar, processed food or caffeine. Go on, try it. I dare you), early bedtimes, naps, gentle exercise, mindfulness, and strict adherence to taking my medications. I’d give myself an A+ in this, until now. Now I find myself skipping my medications. I ate dairy the other day. It did not go well. I had half a drink on a date, and it was delicious (it was also a great date. I want to see him again, see if the chemistry holds, but Trump fucked that all up). The alcohol didn’t affect me as much as I thought it would, but I had maybe half a shot of a Rusty Nail. God, I love a good Rusty Nail on a cold winter’s night. I eat too much or too little. I eat chips for lunch sometimes.

Maybe this is to be expected, a more realistic path than the monastic life I have led for the past two years. Maybe I am frustrated, and tell myself “what the fuck, it doesn’t matter. After all I’ve done, I’m still sick.” This is a dangerous time for me. I have to be able to see the light at the end, and it’s not there. Why is healing so hard? Why does Lyme have to be so goddamned hard? 90% is no better than 50% for living a life. In some ways it’s worse, because you get a glimpse of a normal life again, but can’t quite do it. In a sick way (sorry, bad pun alert!), nodding off on the sofa was preferable, because I had no choice in the matter.

How did I handle this in the past? If I look back, I always hit this stage at some point post-surgery. After my ACL replacement, I hit rock bottom around three weeks after. My ex, an old hand at taking care of me after surgery, knew my pattern well. He brought me a dozen oysters and a bottle of Pouilly Fuisse (or fussy pussy, as it was known in our house). It helped tremendously. Lyme is different. I get a string of days where I think this is really it, this is the end. I’m going to feel great. Then I don’t, and I don’t know why. This turned into a bit of a whiny rant, hasn’t it? I don’t care. And that is at the heart of my rebellion. I think I am mentally tired of being positive. I also think the political turmoil that is Trump has been soul-sucking and spiritually exhausting. I’m going to have to find a way to tap into some good juju.

Update: I had an acupuncture treatment this morning. There are reasons I don’t feel well, and they are spelled h-o-r-m-o-n-e-s. Ha! Held hostage by my body once again. By the way, acupuncture rocks. It’s hard to find the words to describe the way it feels. For me, after the initial shock of some of the needles, (if your liver is flaring up, the needle zings as it goes in, and not in a nice way) it’s like a warm electric current flowing through my body. She cradles my head and does acupressure up and down my spine, neck and hips. It is heaven. Oh yeah, she said relax, give yourself a break, you’re only human. I think I’m gonna be alright.



I like my body. I’ve never quite trusted it, because it was broken when I was seven. I fell out of a tree and fractured my skull. I was in a coma for about a week. It’s funny what you remember about hospital stays, especially when you’re young. I definitely remember the nurses coming in and taking my temperature (they did it anally back then, HELLO!). I I remember the doctor’s name: Dr. Fountain. I remember him sitting by my bed with his watch, asking if I heard the ticking. I don’t remember that my answer fazed me one way or another. At seven, one accepts change easily. I remember my Nanny gave me a Snoopy stuffed animal with a built in radio. We listened to a baseball game together in my hospital room. I went home to a new house, because I managed to fall on a Sunday afternoon at my dad’s new bosses’ house during a relocation.

The whole year after my fall is a large chalkboard with four or five sentences, the rest erased completely. My brothers found a live bat in the yard. My dad held its quivering body in a towel wrinkled by its tiny claws. I had daily headaches and dizzy spells. I practiced on our new grand piano in the new living room. The house was a modern, open ranch with tile floors. I loved to bang out loud, lively pieces. The notes hung in the air and crashed throughout the house. That was power.

The next insult to my body was deeply personal, another kind of power wielded by my brother without my consent. I have never and will never forgive him.

I had a partially detached retina when I was 17. The surgery was routine. However, my horrified parents got to listen to me hit on the poor orderly while I was high on some magical pre-surgery drug. Afterwards, I was rolled into a storage room with a rubber glove filled with ice over my eye. I must have been considered a low risk patient. After that I had many minor and major surgeries, all having to do with my faulty lady parts. That’s all I need to say about that. All told, I’ve had eleven surgeries; four major and seven minor. Great preparation for Lyme.

My mother was a functioning anorexic for most of my life. At the end, she became a non-functioning anorexic, and it killed her. She was 59 lbs when she died. One of the gifts she gave me was a healthy body image. Whether she did it on purpose or not, I am grateful. She taught me that my brains and personality would last far longer than sex appeal. She taught me that a strong, healthy body was the most important thing. These lessons didn’t sink in as easily as I make them sound. I went through a dork phase that was epic (pixie cut, blue granny glasses and braces for buck teeth). I fretted over my looks like most young women. To this day I think my head looks like a potato in pictures. My boobs weren’t big enough. My legs were too skinny. I rarely dieted, however, and always exercised. I abused my body with drugs and alcohol and had lots of sex. But I never quite trusted that I was indestructible.

By the time Lyme hit, I had lots of experience in dealing with physical setbacks, or, let’s be honest, the problems that can happen if you’re female. Endometriosis, ovarian cysts and scar tissue wreaked havoc inside of me for years. It was a relief to have everything taken out. I developed an allergy to morphine and food sensitivities. Lyme was no walk in the park, far from it, but I had experience. I am tough as nails at enduring. I consider my body ‘temporarily offline’ right now, as it has done off and on throughout my life. I’m babying it along, taking special care with diet and rest.

On my worst days, I hate my body, both in appearance (I’m starting to bear a startling resemblance to Mr. Peanut) and performance (another day of aches and fatigue). I tried positive imagery, imagining the billions of little spirochetes, bacteria(s?), and protozoans dying and being swept out of my body. What I usually got was gross negative imagery, of squiggly microscopic creatures burrowing in my brain and eyeballs, teeth and joints, heart and liver. This was a new kind of battle for my body, unlike any other I had endured. I’m almost well now, and my body is the last to know it. I tell my body every day that I am better, I should feel better. So far, the body does what it wants. I still like it though, it’s the only one I’ve got.



I am scratchy and irritated these days. Is it the nature of healing? Is being constantly annoyed a sign that I’m getting better, and if so, why? You’d think I’d be all happy and excited, and I am, but I’m also fractious. I curse at all the drivers on the road, loudly and often. This isn’t new, anyone who has been in a car with me knows my predilection for cursing at other drivers. What’s new is the vehemence and frequency, the lack of control I have over my rage.

One of the symptoms of bartonella, the last co-infection to die, is irrational anger. I do have that, and I don’t like it. This fractiousness is more an angry restlessness at my life, what I’ve lost and how much farther I still have to go before I’m well. It’s also frustration at how hard it is to pick up your life again, especially when it dawns on you that you can’t go back to what isn’t anymore. So now I have to move forward, whether I want to or not. It’s scary, and I don’t like scary. The whole thing exhausts me!

It’s also getting harder to comply with the Lyme protocol. I don’t like answering questions about how I am. People look at you like your doctor is exploiting you, or he’s making up your treatment as you go along, because it’s always something. That’s Lyme disease. In a sense, he is making up my treatment as we go along. Every case is different, because every tick bite is made up of different bugs. We get misdiagnosed, under-treated (2 weeks of Doxycycline? Please, bitch!), and denied treatment by insurance companies who believe that anything over 30 days of treatment is uncalled for. No wonder I am fractious. It’s a miracle I’m not starkers. Wait…oh yeah, that symptom is mostly over.

In a way, I like the irrational anger. I am not prone to irrational anger. It’s almost fun to blow up, at least in private. I can now imagine what angry people feel all the time, the release of…what? I’m not sure I know what is being released, only that something loosens inside when venting, and the pressure backs off a little. To turn this rage on another person would be unthinkable to me, though. I contain myself to screaming at nothing. Once, however, I screamed at the dogs. I NEVER do that, even though I’d like to sometimes. That one scared me more than anything.

There is a lot of yelling going on in the world today. A lot of anger and distrust. I will not be a part of it. Listening to an angry person is a soul-sucking endeavor. A part of this fractiousness is an impatience with the world today. I don’t have the time or energy to put up with toxic people. At the same time, I have to participate in the world, such as it is today. I often wonder what we will call this new era. The Age of Hypocrisy? The Age of Rage? Whatever history dubs it, it won’t be flattering, that’s for sure. So my small part will be to keep my grumpiness to myself. It’ll be tough. Curse words will be used liberally while I talk to myself. Cleaning, music and hiking will be my anodynes. I hope. If any of you catch me bitching, slap me, please.







Being sick is boring. I used to joke that Lyme had transformed me into a swooning Victorian lady until shit got real. Then it wasn’t funny anymore. Seriously, think what it must have been like to be sick before, say, 1910. There would have been days, weeks, hell, months of confinement with little to do but lie there. Of course, if you were rich, there was a staff of servants to tend to your every comfort, but aside from talking to other people or watching the world outside your window or reading, there was nothing to do. Some people might argue this was the perfect time to contemplate one’s navel. I would argue they have never been really, really sick for a long time, so fuck them and their lofty goals.

This is where modern comforts become indispensable. It’s as though all of our advancements have been designed if not solely for long term illnesses, most certainly for our convenience. Hot, instant showers, check. Microwaves for easy cooking, check. Cell phones so you can stay connected, check. Television to pass the time, check, check, check.

TV is complicated. It can be used to enrich, enlighten, and entertain. That’s the good side. TV can also pacify, stratify (take a look at the differences in TV habits of America if you don’t believe me), and nullify. That’s the bad side. I liked the bad side while I was sick. When I say bad, I mean mindless. I watched, in no particular order, Law and Order: SVU, Snapped, Property Brothers, Fixer Upper (okay, this one is not that bad), Chopped, House Hunters, Hoarders, Intervention, Toddlers and Tiaras, and Project Runway. Oh, and the Hallmark Channel (at some point I will dedicate a whole blog to Hallmark). What is it about these shows that tickled my brain when it was inflamed? I’ve thought about it a lot and I think these shows have some similarities that I needed. For one, each of these shows followed a strict pattern. They all had distinct noises/theme music that signaled each segment of the show. None of them require any thought (except maybe Law and Order), and all can be watched with half of your attention, which is good because while I was sick I had the attention span of a Retriever puppy. All these things combined made them perfect for entertainment while sick.

I’ve never been one of those people who had “my shows”. My nanny used to talk about her shows as if they were close friends with rigid schedules. Saturday night? Lawrence Welk. Sunday night, Ed Sullivan. She had her soaps. She LOVED Carol Burnett and Red Skelton. At the time, I thought these were signs of a deeply impoverished life. Now that I’ve spent over a year living a deeply impoverished life, I don’t judge. TV fills the void. You’re too sick to socialize, or do anything useful, but not sick enough to stay in bed all the time. TV brings life into your own life, people talking and doing things. For many shut-ins, TV becomes a lifeline to the outside world.

I did watch other things. I tried watching the news until the election coverage became so shrill and disturbing I had to turn to something else less contentious, like “Bad Girls Club” (If you haven’t seen it, you should, if only to see how low TV can go). I tried watching movies. The only ones I could follow were either children’s movies (“Up”, “Toy Story”, “The Incredibles”) or stoner movies.

With my brain returning, my TV time has sharply decreased. What I do watch is more cerebral and less filler. I’ve returned to Netflix to see shows like “Stranger Things”, or “Frankie and Grace”. I still can’t watch long convoluted dramas like “House of Cards” or “Game of Thrones”. To be fair, I don’t like shows like that much anyway. What I’ve learned during this whole ordeal is sometimes TV, especially bad TV, has a place. I’m not recommending a steady diet (GIGA is real), but when getting through the day is your only goal, TV can be a lifesaver.