moving

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.

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talking to myself

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.

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denial

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.

 

 

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Even keel

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.

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pot

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.

 

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Herbs

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.

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guardian

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.

 

 

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resettling

I railroaded my dad into letting me move in with him this past September. It seemed like a good time with COVID and lockdowns and my continued journey with chronic Lyme. The original plan was to sell my house, move in with dad for a while, and later on, move to Costa Rica. Then came COVID and a radical change in plans. I kept my house. Katie is living there and taking care of everything. Keeping the house  was more of an emotional decision than purely financial. It didn’t  (and still doesn’t) seem like a good time to take risks.

Isolation was wearing on everybody by this point. I had stopped writing, unable to draw on any of the emotional and mental strength writing requires. I was sick of Lyme, sick of COVID, sick of myself. There was no life-guarding or teaching swim lessons.. Airbnb had ground to a halt. Strangely, none of these things particularly bothered me. Trying to help dad solve his everyday problems with his computer, or his phone, or some mail he received, that bothered me.

It would have been about time to go for a visit without COVID. The more I thought about it, the more I realized that I should be down there for a much longer stretch of time. Not anything concrete or pressing, just a feeling that we could, and should help each other through this time.

My best friend Laura ( I can say that, right, Laura?) needed a break from sheltering with the four males in her household and offered to drive me down to Tucson. We set out the day after a freak September snowstorm and arrived in Tucson late in the afternoon the next day for my 14 day quarantine. Our first place was a tiny condo across the street from dad with NO WIFI. I cannot stress this enough. NO WIFI. We got another place and saw my dad every night outside with masks on.

I moved in the house on the 15th day. Dad had cleaned and moved his office out of the room next to my bedroom. This visit was very different from earlier ones. We were going to co-exist for a long time. I truly appreciate his willingness to turn over parts of his house to me, allowing me to make them functional for myself. There was another person in the house, though. My mom has been gone for ten years. Most everything has been left the way she liked it. I helped dad go through a LOT of her things after she died, and we got rid of the things that accumulate in illness and old age: blankets, medical equipment, assorted kitchen things that haven’t been used in years, and knickknacks that must have meant something to someone at some time. We never really moved any of the furniture., though Dad had moved a few items out of his bedroom and rearranged the den and his office, but that was it.

This was more cataclysmic. My mom was precise. Not house proud, exactly. Everything had it’s place for both aesthetic and utilitarian purposes and it was to be kept like that. I felt like I was thirteen again, rearranging my room late at night, knowing mom would not be thrilled.

The kitchen was where I started first. Dad, like many widowers, had adapted to a simple kitchen routine: coffee, OJ, English muffin and sausage for breakfast, granola and milk or a sandwich for lunch, and either crackers, cheese and fruit or a frozen dinner for dessert. He used few of the many things in the kitchen. I started small, rearranging the pots and pans and cleaning out the pantry. Then I forged ahead and went through the cabinets. So many mysteries! Why were  there so many mismatched storage containers and lids? Why did we have three candy thermometers? And the biggest mystery of all, why did we keep spices from at least the 90s?

There must have been about thirty containers. I took a photo of some of them. Note the labels and prices. When was the last time you saw any spice for .57¢?

After I cleaned out the spices, I found it easier to change things in the house. I’ve rearranged my bedroom and office. I’ve added plants. The pantry and the fridge are well-stocked, just the way I like it.

We do pretty well, all things considered. Dad’s small retirement community has been and is very isolated, the threat of COVID moving through the community a powerful impetus to not gather or go out. Zoom classes don’t come close to filling that gap. Sometimes, like in my Spanish class, it highlights the differences in how people act during COVID. The three people under thirty have done the bare minimum in terms of isolating and social distancing. They talk about their travels and adventures while the three of us over sixty listen. We don’t do much at all, except go to parks or drive to pick up groceries, or go to appointments that can’t be avoided.

Sometimes I get frustrated when I see how differently people act during the pandemic. I can’t work up too much anger, though. I would probably do the same if this happened when I were much younger. It seems to me that it’s easier to hunker down at home and keep busy when you’re older.

At any rate, I can’t control what other people do. I can only control me. So I write, read, hike (a LOT), cook, clean, and keep trying to learn Spanish. I get depressed, I have relapses. I try not to think about when everybody else goes back to normal and I’ll still have Lyme to deal with. I think about letting go of the illusion of control to gain control, a futile, koan-like pursuit that so far, has not given me any intuitive enlightenment or tranquility.

I have done everything that I can do to protect myself and Dad from COVID and from the crushing loneliness self-isolation brings. Next week the Australian Open begins and we’ll watch tennis together, something we’ve both missed far more than I would have thought pre-COVID. We’ll continue to do our best to get along. I’ll ponder the fact that I have become my mother about many things. And then I will return to what I’ve learned best in the last six years with Lyme: the full-time business of coping.

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One of those days

There is truth to the adage Johnny Depp quoted in “Pirates of the Caribbean”: “Crazy people don’t know they’re crazy”. Whenever Lyme is flaring up, I am always slow to realize it’s happening. The first signs are the same. Aches and pains, headaches, a heavy fatigue, and a brain that skips and skitters. Obviously I ignore them all. If my balance is off, or I drop things, well, it’s because I’m tired, or stressed, or hungry, or too cold, or too hot, or not thinking. Ahhh, the not thinking. I NEVER think I’m not thinking. Instead, I have days like yesterday and today.

I went for a walk early in the morning, when it is cool. The bottoms of my feet throbbed (a strange, but telling sign of a bartonella flare up) and I fumbled and dropped the dog’s leashes more than once. What else did I do? It is the day after that I write this, and I can’t fucking remember what I did yesterday. Another sign I conveniently shove aside. Oh, right. I cleaned the kitchen, vacuumed, and mopped the floors. Then I studied Spanish for today’s class. Did I cook? I don’t think so. I did do the Sunday crosswords. I do the NYT, LATimes, and Washington Post Sunday crosswords. Don’t be too impressed, I’ve been doing them for years.

My friend Kathy Fernandes and I used to do crosswords together waaaaay back in 1978. I struggled mightily back then, but now, on a good Sunday, I can complete all three in under an hour. Jesus Christ. I’ve been doing crosswords for over forty years. I’d better be good at them. So. I did those things, and read a little. Still hasn’t dawned on me that I’m not thinking clearly.

Today I walk early again, without the dogs. I drop off my ballot for tomorrow’s primary at Lakewood’s City Hall, a short ten-minute walk from my house. I come home and let the cat out into the back yard. Oops, the neighbor’s cat is in our yard and Esme streaks away, chasing the other cat. I call out to her, as if she were a dog and would listen. I debate on whether or not to call Katie and tell her the cat is gone. In the time it takes me to check the front yard and walk back through the house, she’s reappears, licking her paws and looking quite pleased with herself.

I check my email. An invoice I paid yesterday has bounced back. I didn’t enter the correct information. I drop a bowl and break it. I check my Facebook feed. Here’s where it gets tricky, ever fucking time. I read someone else’s good news about their work, and start to wonder what I’m doing. I start to mentally beat myself up. I sit down to study. No dice. I sew some masks and realize I have sewn the elastic in backwards. I throw the masks down in frustration and begin to study again. My mechanic calls and tells me my car is nearly dead, unless I want to spend a few grand on the exhaust system and manifold. I don’t know what a manifold is and I know my car is dying. What am I doing with my life? I prick my finger with the seam ripper and stew inside.

This is where the light bulb goes off. Well, it’s hardly a light bulb…more like an old-fashioned match in a very dark cave. “I’m having a flare up,” I think to myself. “I’m not thinking clearly!” Then I think about that for awhile. Is that true, or am I just being (insert a myriad of words here: lazy, stupid, stubborn, stressed-out)? Nope. Definitely a flare up.

The admission gives me an instant sense of relief. It’s not technically an admission, since I’m not admitting anything to myself. I’m recognizing that my brain isn’t working well at the moment. The next step is deciding what I have to do and what I don’t have to do in the near future. Naturally, since I’m not thinking clearly, I decide to write a blog instead of making more masks, studying for tonight’s Spanish class, or writing. My throat hurts a little. Maybe I have COVID-19. It’s not a stretch. Many of the symptoms are the same. I’ve spent a fair amount of time these last few months playing ‘is it Lyme or COVID?’ Nope. Not COVID.

My brain will not be able to stay on any topic for too long. I’m going to have to flit from task to task, accomplishing what I can and letting the rest go. This will mean some time will be spent discovering mistakes and missteps and having to correct them, like having to pick the seams out of three masks and resewing them. I’ll go ahead and publish this before I’ve checked to see if makes any sense. That way I can go back and read it later and wonder what the hell I was thinking.

I don’t know how long I’ve been this way this time. Katie has been house sitting or with her boyfriend. Maybe my friend Laura noticed something on Saturday. It doesn’t really matter, in some ways. In other ways, it does. I left the hose on for over an hour yesterday when I was filling the pond. What things would I overlook if I was alone? The fog will disappear at some point, and I’ll forget all about it until next time. Then I will go through the whole cycle once again, none the wiser, again. A perfect Lyme circle.

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sequestered

There’s a difference between quarantined and sequestered. Quarantined means YOU have the illness. Sequestered means I DON’T WANT THE ILLNESS. I’m back to where I was three years ago: stuck at home being sick. Bartonella, one of my co-infections, is the bane of my existence. Borrelia burdorferi and babesia have been contained (not eradicated, contained). Not Bartonella. It continues to rage inside of me, hiding and dodging despite our best efforts. So I’ve started a new medication, Rifabutin, a powerful antibiotic used in AIDS patients as a prophylactic against mycobacterium avium complex (whatever that is, it’s probably deadly if you have AIDS). In Lyme patients with Bartonella, Rifabutin has proven useful in recalcitrant patients like myself. The bacteria hides in white blood cells, where other medications can’t reach. Rifampin kills the bacteria, and also the host white blood cells. This means that my WBC count is going to drop. A lot.

Because I’ve taken quite a few drugs with nasty side effects (mainly related to the liver), I wasn’t worried at first. I texted Katie and bitched about the cost ($484!). When I got home, Katie read the drug warnings on the package. She didn’t like the sound of this one. If I get sick, I could get very, very sick, and if the illness is serious enough, possibly die. My doctor warned me of these things, but I glossed over the warnings, because what choice do I have, really? I can feel shitty most of the time or I can take another shot at feeling better most of the time.

In my last blog I wrote about Bartonella’s nasty symptoms, and they have not improved. I feel disconnected from my own reality, as if I am watching myself exist. Panna Naturopatich describes chronic Bartonella very well (http://www.pannaturopathic.com/bartonella-treatment), along with treatment options. Feeling disconnected from one’s own life is a strange, disturbing feeling, and I want it gone. That’s why I’m willing to take Rifabutin. That’s why I’m sequestering myself at home for the next 4-6 weeks. I cannot risk getting sick.

Katie strongly urged (okay, insisted) that I sequester myself at home until we know just how low my WBC will drop. She’s right, as are the two medical professionals I know who also advised me to be very careful when I explained my situation. I’ll get a blood test two weeks after starting Rifabutin. I’m a little over one week in. Friday was my last day of work for a month, and I’ve stocked up on groceries.

I like the word ‘sequester’ as opposed to cloister, cut off, insulate, withdraw, close off, or segregate. I don’t really mind hide, or the more philosophical enisle, or island. Secrete just sounds wrong, and draw back is too close to the truth. I have drawn back, for both my mental and physical health. I’m cocooning, without the promise of emerging better and more beautiful, or the coziness and growth cocooning implies.

What will I do with myself? I guess it depends on how bad I feel. The first week was rough, as it often is when I start a new medication. My body is worn out from fighting recurring flareups and die-offs. If earlier herxes are my guide, there will be many days where I won’t feel like doing much more than playing games on my phone and lying in bed. When I feel okay,  I’ve got yard work, reading, writing, binge-watching TV, cooking, and cleaning. I can walk the dogs in the park if I stay away from people. I just can’t go to public places where lots of people congregate. That means no Rec center,  no movies, no going out to eat, no library, no grocery store, no writing classes, and no volunteering. I’m sure some people would shudder at the thought of not being able to go out. I’m not one of them. I’ve long joked I would make a great astronaut, because I have no problem being confined to small spaces for a long time, as long as I have things to do.

This is one of those times where I have to view Lyme as a full time job. I am making the transition into accepting that Lyme is my full time job now, its shitty, erratic hours and insane demands on my life crowding out everything else. Once I look at my voluntary sequestration that way, things become much, much easier. This is not, once again, a ‘poor me’ post. This is a reckoning with a new drug and the possibility that Lyme might be with me forever. I am learning to deal with it, in much the same way I deal with any setback; imperfectly and less than enthusiastically, I will inch forward until it’s over.

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