This is where I get excited about my life. Or depressed, or confused, or any of the things that make me tick. Speaking of ticks, I was bitten by one in 2014 and contracted Lyme disease, but didn’t start treatment until mid-2015. Big mistake. I started this blog to talk about how I found joy while living with Lyme. Now I am trying to live life AFTER Lyme, if there is such a time. Like all things worthwhile, it ain’t easy.
I can always tell when I’m fighting an infection now. Babesia, a malaria-like protozoan parasite co-infection that hasn’t been in the picture for over two years (maybe more, I can’t keep all this shit straight) has returned. It’s probably due to an overload of stress and activity. I’m selling my house and down-sizing. I made the decision, traveled to Denver, prepared the house, and sold it all in three weeks. Fortunately, I have plenty of experience in this area. I’ve moved 39 times (give or take a few hasty moves in my college years) both as a child and as an adult. When I was married, I was the one who did all the legwork to prepare the house for selling and moving. As a child, I watched my mom do the same thing. She was highly organized and I don’t recall any trauma from a poorly thought out move. So I scrubbed, cleaned, packed some things up, and made the house look like someone would like to live there.
Houses are selling in less than a weekend in Denver at considerably more than the asking price. I don’t know when I’ll ever see a stronger seller’s market for houses in my price category again. It was no surprise when we had an offer Monday morning after the first weekend.
All that activity wore me down and that’s what babesia was waiting for. This is part of the reason I’m downsizing in the first place. The more stress I can eliminate from my life the more I can control relapses (I hope!). There was no sneaking up with this infection. It barreled in back in early June and it is raging right now, in spite of being on medication. And babesia has a unique set of symptoms: my eyes ache, itch, water, and blur, my teeth hurt deep in my jaws, I have a sharp headache constantly, I break out in sweats, my muscles ache, and my brain gets anxious and angry. I know, you’re thinking it sounds a lot like my other co-infection symptoms, and you’d be right. It’s the nature of the symptoms that is different. I could write pages on the differences, but I’d bore both myself and you. Let’s just say you know it when you feel it.
At any rate, the end result is a body in combat. I sleep a LOT, like ten or more hours a day. This Sunday I couldn’t stay up for the entire Wimbledon Men’s Championship match. Bear in mind, this was 10:30 am. I’d been up for four hours. In my defense, I detest Novak Djokovic, so not seeing him play isn’t exactly a hardship. It’s just frustrating to bow down to my body’s needs instead of doing what I want. I slept until a little after twelve and when I woke up, Djokovic had won. Yuck. I don’t like him. I find his whiny arrogance combined with his neediness that tennis fans adore him off-putting. I didn’t had the energy to do much else. It is one of the truths of chronic Lyme that it takes a tremendous amount of energy to fight off active infections, especially a parasitic one that feasts on red blood cells, like babesia.
The other sign my body is working overtime is my appetite. I am constantly hungry. Not junk food kind of hunger, but a deep urge to eat nourishing foods. I crave fruit, protein, vegetables, and fats. I give in to the cravings because I think my body knows what it needs when it’s laboring like this. Today it was leftover grits and fried catfish with some eggs on top for breakfast. Lunch was a big salad and sardines (go ahead haters, sardines are delish). I had popcorn for a snack and dinner was a baked sweet potato and steak. I’m still hungry. But I’m full. It’s annoying. What isn’t annoying is that I don’t gain a pound while this is happening.
So, I’m sleeping and eating or thinking about both most of the time right now. It’s a strange activity, fighting infections. I don’t necessarily feel ‘sick’. I feel like a bear must feel at the onset of hibernation. Grumpy and eating and eating for the long winter and becoming increasingly sleepy. If I don’t have anything else to do it’s not bad. I basically plan meals, cook, and lounge around waiting for sleep to overtake me. But I don’t get too much else done. I can only hope that allowing my body the rest and nourishment that it needs will get me back on track soon, because I have a lot to do in the next few month. I have to find another place to live, pack, and get rid of a bunch of stuff. I have to line up movers and a service to sell all the things we don’t want. I’ll have to sign a bazillion pieces of paper in order to sell and buy a place. I can’t say the process will be enjoyable. I can say moving is one of my life skills that has proven to be incredibly handy. I’ll do what I always do: forge ahead and remind myself daily that when it is over, I’ll be in a better place, physically, mentally, and financially.
I’m in the “I need to give myself a good talking to” phase of recovering from this latest relapse. It’s the stage where I’m returning to normal and I always do that better physically than mentally. Unless you have experienced unpredictable lapses in your health, understanding the amount of mental strength it takes to get your head straight once again is hard to fathom. It’s real though, and to deny your brain the time to heal, too, is just plain silly.
That doesn’t alleviate the frustration of reclaiming your brain. The mental effects of Lyme are perhaps the slipperiest symptom of all. Quantifying mental distresses like anxiety, depression, OCD, and depersonalization can be tricky, especially if they are directly tied into an unpredictable, yet reliable pattern of illness, like Lyme. I’m not sure medication would help me, for I function quite well (translation: I hole up and hide from the world) even when my brain has walked off the job for a while. At any rate, I’m weepy and angry and sad and anxious and scattered and blank when I’m sick and then I get better. It’s that in-between phase that I inhabit right now, the sputtering back to life of the ol’ bean.
The first thing to come back is the need to ‘put things back in order’. I think I’m doing great and keeping up with everything and then I discover all sorts of stupid shit that I’ve done. Once that’s sorted out, I have to see what emails/business/friends I’ve neglected or forgotten and reach out. Then I must clean and reorganize. This time it was my closet, moving around my “winter” clothes for my “summer” clothes (quotes intended, because in Tucson, they’re the same!). So. My life is back in order and it’s time to start thinking and writing again. I’ve tried to write while relapsing, and I can assure you that it is an exercise in foolishness, the writing wooden and the thoughts going nowhere. I still do it, if for nothing else but the entertainment of reading it later.
There are a few things I’ve discovered about my process, the main one is every single fucking time I think my brain is not going to come back. I grow impatient and start scolding myself. Thus the “give myself a good talking to” phase. It that an old-fashioned phrase? I’m sure I heard my mother say it and read it in books. I started using it once I left home, and had no one to do it for me. The voice is usually my mother’s, her pragmatic, tough view of getting on with it has served me well over the years. Not with Lyme, though, because the act of getting on with it is more complicated than buckling down and working harder. My brain is still warped while I’m doing said talking to and attempting to buckle down. Like old furniture, my brain takes time to warp, and more time to repair, the wood coaxed back to its former shape with pressure, clamps and glue. There is no rushing the process. Telling myself to get going again is my version of clamps and glue, applied liberally to quite literally straighten myself out.
Sometimes I wish there was a way to see what is happening inside my brain matter during relapse, recovery and periods of wellness. I imagine my brain swollen during relapses, the neural pathways squeezed so tightly they only partially function, and when they do, they misfire. During recovery, I see the pathways opening randomly at different rates, struggling to reestablish the known and familiar. It’s the wellness phase that I’m most curious about. Have some of those pathways been squeezed too hard by inflammation and been destroyed forever? On the other hand, I try not to think about this too deeply, because I’m not comfortable with the idea that every relapse invites a bit of destruction to what makes me myself.
I have a lot of freaky thoughts while my brain reawakens. I’m sure this is completely expected and considered normal by neurologists who study brain traumas, but man, is it weird. The good thing is that they are fleeting and not so weird that I worry about becoming permanently mentally ill. In fact, there is something exhilarating in knowing that all these strange manifestations are caused by an identifiable source. Katie likes to remind me of this frequently when I tell her I’m not thinking clearly.
“I’m not thinking right now and I can’t figure out why,” I say.
“Yes you do,” she says. “It’s your stupid fucking Lyme.”
Katie is the angel/devil on each shoulder and I am lucky to have such an uncensored voice. She doesn’t scold or sugar coat. She tells it like it is to me, as she has done her whole life, whether I want to hear it or like what I’m hearing. She also tells me to relax, I say this every time and every time I get better. This is far less guilt inducing than my mother’s voice. From now on Katie’s voice is the one I am going to strive to channel whenever I feel this urge to give myself a good talking to.
I don’t normally post links, but this very short article on the chronic-symptoms of those of us who continue to suffer from Lyme long after we’re “supposed” to is very good at explaining the experience in our society and healthcare system.
I’ve never particularly been one for self-denial. Not that kind! Jeez, people. The kind where I don’t ‘allow’ myself to do things I might enjoy because I’m chronically ill. There are several reasons for this, but the main one is that over time, I have come to feel guilty for still being sick and have twisted this into a toxic “I’ll do it when I’m better” mantra. This was extremely easy to stick to during COVID, but now that the world is coming to life, I’m starting to wonder why I’ve been doing this.
As I expected, there are tons of articles about this. There is guilt, embarrassment, shame, and disappointing others, and whoa! back up…grief. I think I’ve discussed this one with my therapist, but I shrugged it off as something I’ve already been through. What if I haven’t, though, and this stupid mantra is one of the ways I’m dealing with mourning my old life. I didn’t know this, but ‘serious illness’ is #6 on the life-stress scale, after Death of a Spouse, Divorce, Marital Separation from a mate, Detention in Jail or Other Institution, and Death of a Close Family Member. I suppose I have ceased to think of Lyme as a serious illness anymore. It’s been with me for over six years now, but it’s nowhere near as debilitating as it was for the second, third, and fourth years.
Wow. Maybe I am grieving, because sometimes I forget that there were THREE WHOLE YEARS of being sick over 80% of the time. That’s crazy. I could be either beginning to grieve again, or emerging from a long period of grief. Ugh. I’m going to have to think about this.
Fortunately, I’m not alone in my journey. So many people are having trouble emerging after a year of lockdowns that there are columns offering advice on how to rejoin the world. The decisions can be overwhelming, especially if you have worries about catching anything. Can I fly? Is it better to drive? Where can I go, and once I get there, what can I do? When do I where a mask? What if someone confronts me about wearing/not wearing a mask?
Overall, I’m not particularly worried about any of these things. My fears are more existential, it seems. Do I deserve to be out here? Should I allow myself to be frivolous, to have fun? If I do, will it be my fault if I have a relapse?
I just noticed the language I used above, the words ‘deserve’, ‘allow’, ‘frivolous’, and ‘fault’: I am limiting myself, I’m not sure it matters if it’s because I feel guilty, or I’m embarrassed, or grieving. Now that COVID restrictions are lifting, there is no excuse for self-denial. I have to re-learn how to let go and do more things that I enjoy. This is different than relaxing. I have to relax and take it easy to stay healthy. But what good is a life that isn’t lived?
I came back to Denver this week for a lot of reasons, but one of the main ones was to see my Lyme doctor. I knew something was off kilter, but didn’t know what. I’ve had a return of babesia and bartonella. I asked him if it could have been something I’d done. He said maybe, or maybe they made a return for reasons unknown. I hate the feeling of bacteria, parasites, and spirochetes hiding in my body, little bombs just waiting for an opportune time to reemerge and proliferate and not having much control over it.
Babesia is a real fucker, and I’d forgotten the crippling symptoms. The main ones are burning, blurry, itchy eyes, neck pain (like whiplash bad), headaches, body aches, a wicked intermittent sore throat, drenching sweats, and constant fatigue. This one, though, is the one that gets me: migrating, unrelenting, throbbing pain in my teeth and jaws. It gets so bad that I can’t chew. I spend quite a bit of time thinking that it’s not babesia, that one or more of my teeth are truly rotting or cracked or something. That’s the babesia speaking, as there is also a mental fog/rage/OCD component to deal with. And then the pains move somewhere else, and my teeth are just fine. All in all a miserable experience, one I was glad to put behind me several years ago. Seems that babesia has other plans for me, forming cysts in my body until the time is right.
When I’m relapsing and herxing, self-denial is the last thing on my mind, the thought of ‘getting out there’ momentarily shoved aside. On a day like today, I feel thankful to walk the dog, get through some Spanish, and take care of myself.
But like everything Lyme, I’ll take the herbs and medicines, and the flare-up will subside in a while. I will play catch up, and then I will start wondering if I should get myself out there into life. Logically speaking, if there is no predicting when I will relapse, wouldn’t the strategy be to ‘plan’ for a relapse after I’ve had a trip, or a conference, or whatever I choose to do? That’s kind of what I’m thinking about now. I’m not ashamed to admit that I’m scared. Scared of making plans and scared of NOT making plans. Both choices carry risks and neither is a guarantee that I won’t relapse and feel as awful and numb as I do right now.
I can’t live like that though, and I’m going to have to figure out a way to spin this to myself in order to move forward and live. I want to stop denying myself the pleasure of playing pickle ball, or taking a trip to see friends once in a while, or going to the movies, or even relaxing one afternoon to binge-watch tennis.I think I’ll give myself credit for recognizing my dilemma and work on stopping this self-denial and start planning for the future. When I feel better.
I try mightily not to be judgmental. In the effort to put myself in someone else’s shoes, I fail most miserably with myself. Some of the ridiculous judgements I make (only with myself): should you be doing this? Why aren’t you doing that? Do you really feel that bad? You’re just being [lazy, a drama queen, too soft, too hard, not serious enough, too serious] and more, every permutation a judgment on me.
It’s hard not to do this when you’re always navigating a chronic illness. Chronic illnesses like Lyme are floaty ephemeral things, randomly disrupting your life in dozens of ways. That makes it less real and concrete, unlike, say, arthritis, or diabetes, or an illness like cancer. In these illnesses, the causes of those diseases are measurable by tests and the core symptoms never shape-shift and morph on a whim.
And Lyme, along with its co-infections, may be chronic, but it is mostly—and I fucking hate this word— manageable. And so I judge. I look at people I know who have far deadlier and scarier challenges than Lyme and all of a sudden my ability to see things as they are for me vanishes.
When I get in a judgmental funk, I often second-guess what other people are thinking. ‘Well, she was able to [swim, hike, write, clean, cook, shop] so she can’t feel that bad,’ ‘She was fine yesterday. How can she be sick today?’ Maybe they don’t think any of these things, but I think they do. I tell my self to stop it, but I don’t listen when I’m in this kind of mood. Like an overtired toddler, once I’m wound up, I can’t unwind.
I tend to second-guess myself, too. At least twice a week for the past six years, I wonder if I really have Lyme. I wonder if I am relapsing at all. You’ve felt pretty good for the past <day, week, month> my brains says. You’re probably not sick at all anymore, just goldbricking. Cool etymology, goldbricking. Look it up.
That’s when I catalog my current symptoms, the ones that make me doubt everything. Yet, they are the realest part of all. They may not operate on a schedule, but an aching liver, shooting pains in my teeth, a neck ache, sore feet, and muscle pains are concrete, solid things that, as much as I deny them, cannot be denied. Stoicism does not equal wellness. The other symptoms, like fatigue, or when I forget dad’s phone number and address, or what day it is, are much easier to judge as non-worthy symptoms of illness.
And so I scrutinize, picking at myself relentlessly. It starts from the moment I wake up and assess how I’m feeling. How bad is that headache I ask myself. Bad enough to not walk? You have to walk. I suppose if I am being generous with myself, I’d say that this state actually gets me to do things, regardless of how I’m feeling. I almost always begin the day charging hard, getting up early and getting as much done as I can. That’s because it could all grind to a halt at some point in the day. I’m okay with that if I’ve managed to accomplish a few things before the crash.
This has been workable during COVID. We all seem to have had a collective fever dream where ordinary life has hung suspended from the pandemic. Being judgmental took a vacation as we struggled to deal with isolation and fear.
Now that most people’s lives are slowly returning to ‘normal’, I’m certain that the critical cacophony in my head will increase in direct proportion to my perception that everyone else is moving on. And I will respond with the urge that I have to work harder and do more, an insane reaction when I think about it. But that’s just it, isn’t it? My brain becoming mushy with a relapse, my body betraying me once again. I’ll obsess about lottery tickets, fight the feeling that I am running out of time (for what, I don’t know), and worry that I need to write and do things to prove I am worthy, even while I am sick.
My therapist tells me things like, ‘be kind to yourself’, and ‘give yourself some credit’. Easier said than done. I don’t know why I’m harder on myself than on anyone else. If I knew me, I’d think I was handling a shitty hand pretty damn well. Maybe I’m harder on me because I do know me: my foibles, weaknesses, and bad habits. Lyme has a way of exacerbating the bad parts of me and obscuring the good parts. I need to keep working on things that matter to me because I want to, not because I’m struggling to define my self-worth outside of being a chronically ill person.
I have a feeling this is going to take some time. I’ll probably stomp around on my walks muttering to myself, trying to figure out how to accept that who I am is not defined by my illness, nor is it defined by how hard I work to show that I am not ill. It’s a stupid conundrum that is self-created. It will become one of those opportunities for growth that I have come to loathe.
I love the etymology of words and phrases. Yesterday, I wanted to say “on an even keel” in Spanish and struggled to explain what that meant. Two of the students are men in their twenties, and the instructor is a Puerto Rican woman in her twenties. Idioms are lost on younger people now (not all, I’m not trying to start a generation war). Many idioms endured for centuries, but the context has been lost. Not so for “on an even keel.” Boats still have keels, and sailors like them to stay even.
These days my goal is to stay on an even keel. That means different things to different people. When I was young, I didn’t know my mom’s devotion to order and structure kept our house on calm seas until I was older. All I knew was that when I left home at 17, my life was most definitely not on an even keel for a long time, both physically and mentally. It was difficult for me to figure out what I needed to have that sense of balance and stability.
College was one big choppy chaos. I moved often, had no firm schedule, and didn’t care. However, as school came to a close, I looked for a way out of that chaos, and chose marriage. I don’t know why I didn’t have the cojones to forge out on my own, but I didn’t, not back then. I think I wanted to be rescued, or share the burden, or some such nonsense. Of course, this did nothing but add more chaos. I don’t think I felt on an even keel until Katie was born. A newborn baby is hardly an even keel, but for me it was the first true source of stability in my soul.
Over the next years, I discovered how to create my own calm seas, both for Katie and myself. I learned that for me, making a home went a long way towards alleviating chaos and stress. Inside, though, I was still not on an even keel. I was constantly fiddling about in a vain attempt to make someone else happy. It wasn’t until I divorced that I realized I’d been off course for years and years and years.
Even after I got Lyme and was terribly ill, I felt more at peace than I had in the last thirty-five years. I think many times people mistake (or hope) that having things, or having a busy, scheduled life is the same as being on an even keel inside. They usually aren’t, as I suspect many people learned after this long year of COVID. Inner turmoil and unhappiness will find a way to burst forth, and if there is no deeper sense of balance and happiness, things can go south in an instant. BTW, “go south” is an interesting saying, with no clear source. Could be from Native American’s euphemism that to “go south” is to die, or from the notion that if you committed a crime in the 1800s, you could escape the consequences by “going south” and crossing the border into Mexico.
For me, Lyme gave me stability. I had no other choice, but it’s true. I had to find a balance to give myself any kind of life. A funny thing about a chronic illness: any pretense is stripped away, and if you don’t like what you see, you’ll never be on an even keel. I’ve worked extremely hard to figure out what makes me happy, what I can live with, and what I can change.
Your balance might look entirely different. I’ve known people who thrive on pressure and constant change. I’ve known people who have everything going for them and are never in balance. Being on an even keel doesn’t mean everything in your life is going well. It means you’ve gotten your boat in tiptop shape, you’ve learned how to navigate rough water, and you manage to keep your boat relatively stable, at least until you it calm waters once again.
Now that I have that straight in my mind, I can weather any storm. I can even find contentment where others would see nothing but a big old storm bearing down on them, with no chance of not capsizing.
Lately I’ve been looking at my life as a set of bowling pins. The bowler is life, and when all ten pins are gone, the show is over. I like the bowling pin analogy, because when one pin goes, it tends to knock down the other pins. If the ball strikes hard enough at the right spot, a lot of them topple. Many people go a long time without having any pins knocked over. Their bowler tends to roll a lot of gutter balls, or the kind of rolls that make the pins wobble without falling down. My bowler came out with a wicked spin before I was even born, knocking out the head pin. I’ve managed to reset the adoption pin over and over throughout my life, relegating it farther to the back. The knowledge of being unwanted when I was born has become easier to bear as I’ve gotten older.
At the age of seven, my bowler knocked down about eight pins when I fell out of a tree and fractured my skull. I managed to reset those pins when I came out of a coma with only the loss of hearing in my left ear.
After that, the bowler messed around for a good long time, knocking down a few pins here and there. Then I don’t know what happened, maybe the bowler took some lessons or something, because at twenty-one I was diagnosed with endometriosis. That knocked down three or four pins with every surgery and every new treatment, until I had all the lady parts taken out. The last surgery was when I was 42.
At each juncture, I was able to reset almost all my pins. By the time I got Lyme, I’d say I was at eight pins, ten being perfect health/life, and zero pins being, well, dead. Since then, Lyme has been the number one pin, with a shifting cast of health problems behind. I’ve started re-reading Dr. Richard Horowitz’s “Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease.” Not a very exciting title, but it’s jam-packed with information. Aside from bartonella, most of my miseries are the secondary infections and inflictions brought on by an immunocompromised body. Dr. Horowitz calls this ‘MSIDS’, or ‘Multiple Systemic Infectious Disease Syndrome’. Quite a mouthful for what is essentially a pretty easy concept to get. He believes that diseases like Lyme open the door for parasitic or fungal infections, allergies, environmental toxicity, compromised immune function, and many others.
I’ve had all of these, labelled on the pins behind Lyme for varying periods of time. The grossest one wasn’t parasites, although that was definitely an experience. Note to all of you: deworming is not fun. No, the one that made me gag (literally) was thrush. My tongue and mouth were coated furry white with fungus. Most disgusting thing I’ve seen on my body. At my worst, I’d say Lyme and all of its shitty friends had me down to about four pins. I’ve reset many times in the last six years, although the amount of upright pins has dwindled to seven, maybe eight or so on my best days. That’s because I’m never completely well. There’s always some niggling symptom or problem.
The newest pin behind Lyme is not technically new. It’s a new name for a bunch of unexplained problems I’ve had since my early thirties, about the time I had my eighth surgery. I itch when I exercise. I’ve had an unexplained cough for over twenty years. I have random allergies, most definitely not seasonal, and sometimes I wheeze when I cough. I don’t know what it was, or is. The symptoms come and go, and have never been bad enough to incapacitate me. However, after I had the Johnson & Johnson vaccine, I had itchy, watery eyes, blurred vision, headaches, and itchiness over my body, plus a wheezing cough.
I read something on a Lyme forum about a ‘mast-cell storm’ after a Lyme sufferer had their COVID vaccine. This meant their immune system overreacted to the vaccine. At any rate, to calm a mast cell flare, doctors recommend using H1 and H2 histamine blockers. Sounded complicated, until I read more. Zyrtec and Claritin are H1 histamine antagonists. Tagamet, Pepcid, and Prilosec are H2 histamine antagonists. I was so miserable I bought some of both and took them. Within two days I felt much better, and I mean much better in general.
Is this mast cell storm a one-time thing, or something else? The information is, like Lyme, all over the place. Yes, it’s a real thing, called “Mast Cell Activation Syndrome,” or MCAS. And yes, there is a Lyme connection. But for me, these two little pills made a difference in those other problems I’d had for years. I’ll bring it up with my LLMD on my next visit to see if he’s had other patients with this.
Some people think this would be a failing of my doctor not to notice all these symptoms and put them together for me. I would say those are people who don’t understand how complex and perplexing MSIDs are. Part of my job is to help him by analyzing my symptoms and noticing patterns and unintended consequences, like taking medicines after the vaccine. Is it frustrating? Sure it is. But these kind of diseases are on the rise, so the model for patient-doctor-doctor-doctor relationships needs to change (I put a couple of extra doctors in there because Americans LOVE their specialists).
My bowler so far has been frustratingly competent, always knocking out a few pins. There have been no strikes, but there have been a few spares. It is inevitable that one day the bowler will roll a great, booming strike in my sleep—at least that’s what I hope. Because if I had my druthers, it would be when I am a ripe old age, after a fabulous meal. Some great sex would be nice, too, but then one can’t hope for too much.
Since I have been on the subject of herbs, I might as well talk about my favorite herb. I have a long and complicated relationship with marijuana. Sometimes she’s my bitch, and sometimes I am hers. Mostly it’s a solid, happy union that makes us both happy. Since legalization, I’ve been able to choose what strains I want, much like going to a liquor store and deciding if I want tequila, rum, or scotch.
I smoked for the first time when I was twelve, with my brother and his friends, on a Tuesday night in Covington LA when my parents were attending the symphony. We stood in a circle in the driveway, and I remember that sense of being included with the older kids. It did nothing. The second time, I was thirteen, at the base of the dam at Evergreen Lake. It was fucking freezing, and the snow was deep. That time, I felt something, and I liked it.
Later that year I also had my first paranoid moment while high. We had smoked while caroling in Hiwan Hills. We ended the night at someone’s house on Meadow Drive, near Hiwan Ranch. Their parents had an open house night, and there was a nice spread of food. I remember feeling overwhelmed with the colors, the people, and the food. I didn’t want to talk to anyone, but I really wanted one of the rum balls. One of the grownups came up as I was reaching for my third or fourth one and started talking to me. I’ve never forgotten that moment of utter panic as I tried to form coherent answers to his questions.
Once I moved to Kingwood, I found a group of kids who liked to smoke and drink. I never smoked before or during school, nor did I smoke on school nights. On the weekends, I smoked whatever I could whenever I could. Here’s a fun fact: I never bought pot until 2014. Another fun fact: I’ve never rolled a joint. In the ’70s and ’80s provenance of supplying and preparing pot was a mostly male one. I’m sure some of my girl friends bought and rolled because they wanted to have it for themselves when they wanted it, but I was content to let boyfriends and other guys do all the work for the pleasure of my company (Ha! Totally doubtful, but I guess it worked).
It was when I went off to UT Austin that I really started smoking in earnest. My freshman year, I was high every single day except Christmas Day. Back then, what I was seeking was…I’m still not sure. Pot relaxes me, and shuts down the constant chatter in my mind. Kind of what alcohol does for a lot of people, but without the calories or hangover. I get horrible hangovers from not much alcohol. After that crazy year (it was so much more than smoking pot. Things were consumed. Risks were taken. Stupidity ruled.) I worked to find balance. I went months, even years without smoking. I slowly gave up drinking. I cleaned up my lifestyle. When I went off to Bennington, I was an occasional drinker, and had decided not to smoke at all while in school.
Katie and most of my friends who smoke consider me an absolute flyweight when it comes to smoking pot. I say I smoked everyday, but that is one or two hits off of a pipe that wouldn’t even get most stoners a mild buzz. I don’t know if there is a term for being a cheap stoner, but I am one.
Then came Lyme. Fortunately for me, I had gotten a medicinal license back in 2009 and kept it up, more to make a political statement than any urgent need, other than an achy knee. After I got sick, I couldn’t sleep, everything ached, and I was depressed as hell. Katie took me to the dispensary and I got a daytime strain and a nighttime strain. They worked so well I never needed painkillers or sleeping pills. Of course, I was stoned 90% of the time, but I was sick 100% of the time during that period.
Right now, I am in a nonsmoking phase. It was too much trouble to worry about bringing anything to Arizona and I was feeling good. I have times where I wish I had some, but then I look at the map and see that I have to drive half-way across Tucson, and they only have eight strains, and the prices are astronomical so I decide I can wait. I may never go back. I may become an occasional smoker. I may smoke every day again. Like I said, we have a complicated relationship.
People are often amazed by how many herbs I use for Lyme treatment. Our medical community has done a fine job of discrediting the use of herbs to treat many illnesses effectively. I think people imagine me wandering down the aisles of Whole Foods or Natural Grocers, picking up things that will help me with little clue other than ‘I heard it might help’. I do buy herbs or supplements like this, especially for sleep, but not for Lyme. The fact is, any LLMD worth their salt will attack Lyme using many different methods, including herbs. Some herbs are better for one thing, and others are better for another. I buy the herbs I need through my LLMD. Usually, they are proven protocols cited by leading authorities in the field of Lyme, like Dr. Richard Horowitz, or Steven Buhner.
So when something flares up, we (this is not the royal we, Lyme patients have to be adept at describing what is happening) have to evaluate what strategy to use and why. It might be bartonella, or an opportunistic secondary infection, or a return of babesia. There are several possibilities and one medicine does not fit all.
Anyone who thinks herbs aren’t ‘real medicines’ needs to wake up. Aspirin, digoxin, quinine, and morphine are just a few drugs derived from herbs. It’s no wonder drug companies have an active interest in suppressing herbal medicine. I can see some people rolling their eyes, envisioning the very thought that herbs or supplements have any place in medical care. Fine. I don’t care. Trying to convince someone that this is not true is useless, as is trying to convince people who think all pharmaceuticals are bad, or ‘not natural’. To me, both positions show a profound unwillingness to place results over beliefs.
This is not new. It’s as old as the art of healing. With a complex disease like Lyme, the push and pull between science, traditional healing, and other factors like diet, exercise, and religion, leaves most Lyme sufferers with far too many options. The cost of treating Lyme means many patients don’t get proper treatment. Insurance usually doesn’t cover much more than 30-60 days of doxycycline.
This is compounded by the belief that illness and/or ill health is an option, that your lifestyle or lack of discipline is to blame for your illness. Not everyone believes this, but in wealthy countries like America, there are groups who frame illness and ill health as a failure to a) pray enough, or b) not exercise enough, or c) not take enough supplements, or d) not have the right healthcare and/or not visit the doctor/get tested. There are probably a lot more subsets, but it is a strong system of ‘blaming the ill’.
But I digress. I am at a stage where I rely mostly on herbs. If I have a severe relapse, I’ll take whatever is recommended to get back to health. I’m not a snob. Nor am I a fool. Lyme support groups online are filled with ‘miracle cures’ and also with long, long sagas of literally dozens of tests, doctors, and medical treatments. I don’t have to go to the doctor every time I feel out of sorts, or have a new symptom. I won’t jump on the Rife machine bandwagon, or coffee enemas, or whatever someone has said worked for them. However, when dozens of other Lyme sufferers say there is something new that might work, I’ll ask my LLMD when I have an appointment. Dapsone is one such pharmaceutical that has made a huge different to some patients. Stevia is another one when it was found to be a biofilm buster.
It really is a lot of work staying current with treatments and protocols. I have biases. Maybe coffee enemas have helped some people. I’m just not a fan of any enemas, so I’m not going to try that one. You won’t ever find me praying to get better, but I don’t mind if people say they are praying for me. I actively avoid going to the doctor for the little things, and that a might come back and bite me in the butt someday. I’m willing to take some risks as a tradeoff, as are almost all ill people, because a life spent striving for perfect health might not be living at all.
It could be said I take a relaxed approach to my illness, if that makes sense. Obviously this isn’t always possible. One of the luxuries of Lyme (Haha, like there really are any) is that when it is controlled, it’s not likely to kill you, at least not for a long, long time. So I take my herbs, as I did this past week, when I had a flare up. The herbs caused a herx (Jarisch-Herxmeimer reaction, or ‘when the cure makes you feel like shit’) as I knew they would. They also made me feel better, as I hoped they would. When that happens, I wake up feeling better. The clouds part and the sun shines and all is right with the world once again.
I haven’t been hospitalized, nor have I used IV antibiotics. I feel well a good deal of the time. I have accepted that perhaps Lyme will be with me always. I use herbs and pharmaceuticals. Perhaps one day Western medicine will become more flexible about how to heal their patients. Until then, I’d say my choices have been right for me and I stand by them.
I got the Johnson & Johnson COVID vaccine this week. Surprisingly easy, except for the questions. “Have you had any COVID symptoms in the past week?” “Have you had muscle aches, fever, or fatigue in the past 24 hours?” Ummmm…yes? I’ve learned to lie when asked these kinds of questions. It’s not technically a lie, but the explanation of Lyme is too lengthy to go into. It’s more of an omission. I easily separate Lyme from the rest of my health history. If someone asks me if I’m healthy, I say ‘yes’, because I am healthy, aside from Lyme.
Most people my age are on some kind of prescription for something. Blood pressure, cholesterol, thyroid, etc. Not that they aren’t healthy, but they need a little help. So far, I have none of those problems. The ol’ colon is clean as a whistle, the boobs lump free, and no weird moles or skin things (thank you, birth mom for my genes, and real mom, for making me wear sunscreen). My blood pressure is always 116/72, my pulse is in the 50s, and my weight is still teetering a few pounds shy of ‘mildly obese’. So yeah, I consider myself healthy.
And yet, almost every day there is something that hurts or doesn’t feel right. The brain doesn’t fire properly or my throat hurts, or my joints, or my eyes are blurry and irritated. I’m fatigued, or my body aches. There are a ton of other minor problems that come and go, like death from a thousand paper cuts, but none of it is a big deal to me anymore. It just is. Once, while at an appointment with my Lyme doctor, I mentioned some things that had been bothering me. He said, “Why didn’t you call or go to your primary care doctor?” I answered, “Why bother? Almost everything that goes wrong is Lyme-related and disappears or changes.” He agreed with that, and I’ve learned that I’m the one that has to separate how I’m feeling. I use two categories: “Lyme-related” and “getting old.”
I suppose there is a third category, the “Oh shit” one, but so far, I’ve been out of that column since I burned my right hand six years ago (I think it was six years ago, but I just got my daughter’s age wrong, so I can’t truly be trusted with anything time and date related). The thing is, through Lyme I’ve learned that people tend to freak out about their health far more than I do. I haven’t gone to a primary care doctor since that burn, because I haven’t needed to. Virtually everything wrong with me is Lyme related.
As far as COVID goes, many of us Lyme patients have had to play the really fun game of “COVID or Lyme?” After all, the early symptoms for COVID and ongoing Lyme symptoms are virtually the same. I usually allow myself about five minutes to assess how I feel and then I wait to see if anything changes. It usually does, either within hours or days. The pain migrates, disappears, or morphs into another symptom that has nothing to do with COVID.
There is another dimension, the question of how vulnerable Lyme patients are to COVID. My immune system is compromised, but how vulnerable am I really? I chose to stay safe and isolate myself rather than find out the answer to that question. And I chose to answer the pharmacists’ question as it pertained to COVID, not Lyme. The week before the vaccine, I had been experiencing some old symptoms that I knew well. I had already contacted my LLMD and gotten the answers I needed to begin treatment. I had no fever and I wore a mask. I know my body very, very well and had no doubt that what I was experiencing was not COVID. So I went and got the vaccine.
And after the vaccine, I don’t know if I had a reaction to the vaccine or if it was Lyme. I guess that part doesn’t really matter, since it wasn’t going to change the fact that I had gotten the vaccine. Now I have some measure of comfort that if I were to get it, I won’t die, or have to go to the hospital. Those are big things, especially for the chronically ill. We are always on the edge of a health care crisis. They always cost money. The last thing I need is one more.
I’ll continue to separate my general health from Lyme. This paradigm has, oddly enough, motivated me to take the best care of myself so that I can so I can continue to brag that aside from Lyme, that “I’m very healthy.” Diet, exercise, and positive thinking are the only controllable factors I have. If Lyme is the reason I am staying healthy, then that is one of the positive aspects of chronic illness, and that, my friends, is positive thinking.
I watch over myself like the guardian of a high-powered executive. Although the pay sucks and I’m anything but high-powered, I like to think I’m a pretty good gatekeeper. So I hoard my energy, get my rest, take the various drugs/herbs/supplements that are working at the moment, take care of the everyday tasks to be comfortable, and inspect myself endlessly. How am I feeling? Good so far? I’d better do the laundry, take a walk and write while I can. Still good? Great! I can go grocery shopping or keep studying Spanish.
Most days I lie down in the afternoon. Sometimes I take a nap. Other times I lay on my back and think. Sometimes I just play FreeCell for twenty minutes. Some days I don’t get up for hours. It all depends. And when it comes to a social life, I’m more like the harried chaperone of a future princess who would rather screw the stable boy (I know this is sexist and old-fashioned, but I can’t come up with anything better at the moment). Literally the only two people I will drop everything for are Dad and Katie. Everyone else will have to wait. Don’t fret, I don’t make people wait for long, unless I’m really sick and have turned off my phone and turned out the lights. Otherwise, at the very least I will text: Not feeling well. Talk to you later.
Needless to say, this looks a little hinky if you don’t understand what living with a chronic illness is like. It strains old friendships and puts a damper on new ones. But I’m the guardian of this body and mind for as long as I’m alive, so I have to be vigilant. And the one thing that gets my hackles up is when anyone thinks this is a choice. If by “choice” you mean conscious decisions to not expend energy that you don’t have so you don’t feel terrible, then yeah, it’s a choice.
The difficult part is acknowledging that some people require more of your energy than others. That’s good and bad. Sometimes the person works with you and you dread interactions because it is exhausting. I know plenty of people who feel that way about their parents. I have friends I love to be with, but we have so much fun that again, it can be exhausting. I don’t like this new habit of weighing every single activity and social interaction in units of exhaustion. The very act of sifting through all of this takes energy.
That’s another thing that’s hard to explain. From an outsider’s perspective, it looks like I’m doing fine. “Well, you took a walk this morning and attended a Zoom class, and you don’t look sick” means that I am doing a great job managing my energy. What they don’t see is all the things I didn’t do so I could do those two things.
One of the many ways Lyme sucks the energy right out of you is through social interaction. Texting is great. Emails are great. Talking on the phone is problematic, depending on how I feel and who it is. Zoom calls and classes are stimulating and tiring. Seeing people is always exhausting and I have to weigh what else is going on in my life before I commit to anything. If I have to go grocery shopping and then see a friend for lunch, it is near impossible to see people later, unless I’m looking forward to doing nothing for a few days.
I fight with myself a lot, the guardian clashing constantly with the part of my brain that wants to do whatever it wants. ‘Go ahead,’ it says, ‘eat that gluten-filled pizza/swim another 500 yards/go see that friend/take another writing class/go out late with friends/quit being such a BABY’. The guardian steps in and reminds me that this might not end well. Sometimes I simply don’t have a choice, it is something that I must do, like travel between Tucson and Denver, or go to the doctor. Then I make sure I have blocked off plenty of time before and after to rest.
This strategy means that currently I am more well than sick, the relapses farther apart and less severe, the recoveries, if not easier, more bearable. This is good, right? Mostly, except when well-meaning people comment that ‘now I can get back to normal.’ It used to vex me, too, this idea that I’m doing so well I can go back to how it was before. But that’s the whole fucking point! This is my normal now. I will always be forced to plug any activity into the energy formula. If I don’t mind anymore, why does it bother other people so much?
I would argue that it is precisely this energy output strategy that has led me to my current state. The tougher my guardian is and the more time I spend taking care of myself, the better I feel. Now that I have given my guardian full control, taking care of me first has become easier. I still argue with her. However, I know my guardian is the one I have to respect. She is one mean bitch, but she always has my best interests at heart.