priorities

I am bouncing back from a particularly shitty relapse. I’m feeling overwhelmed and hopeless, like I can’t manage my own life anymore. The worst part of this relapse and aftermath has been mental. If you haven’t heard from me in a while, you are not alone. I prefer to be wiggy in private. To add to all this crap, it’s been four years since I was bitten by a tick. FOUR YEARS. I’ve read anecdotal evidence that people have relapses around the same time they were bitten. If so, it makes perfect sense that I relapse now. On top of that auspicious milestone, heat causes some Lyme patients (me included) to feel much worse.

This one blindsided me. I was, I thought, on the road to real recovery. And so began valuable lesson #1 with Lyme ‘recovery’: plan to relapse at any time whether you like it or not. The hallmarks of any valuable lesson is suffering, humility, pain, and a bunch of other emotions I avoid. Denial, my old bitch of a friend (denial is female in my world), came for a nice visit until I dragged my ass to my LLMD. It seems that my bugs like my brain. It’s where they hide when I’m feeling good. He announced the return of bartonella. YUCK! Bartonella is the worst. Sore feet, sore teeth, ear pains, headaches, neck aches, muscle aches, creaky joints, muscle cramps, watery, itchy, achy eyeballs, and mental problems. I love a good euphemism, and “mental problems” is right up there with “small setback” and “not too bad”. Why is it so hard for me to admit to depression, anger, anxiety, hopelessness, lack of motivation, and obsessive compulsiveness? Everybody has some of these feeling sometimes. If anything, I should announce them like a badge of honor, because I have bugs in my brain.

Denial left the house and self-pity moved in. I wallowed around with him (of course self-pity is male!) like a pig in a mud bath for a few weeks. I cleaned. I cooked. I slept a LOT, walked the dogs and gardened very early while it was still cool. That was all I could manage. Self-pity is that friend who doesn’t like any of your other friends. After that, I had hours to fill with all those fab feelings of worthlessness, sadness and guilt. I was able to read some ‘beach read’ books, and the sheer mindless entertainment helped a little.

It wasn’t until I found Downton Abbey that self-pity had a challenge. I know, I’m late to the party. At this rate, I’ll probably start GOT in 2022, and Breaking Bad in 2024. What can I say? I was hooked. Katie will remember this as the summer her mom sat in the cool dark of her bedroom at midday, the sunlight cracking the edges of the blackout curtains, lost in the delicious machinations of the Crawley family.

My relapse was also worse because I had four months of relative clarity and sanity. Is it harder to bounce back mentally each time my brain becomes inflamed? Is it harder for anyone else in this situation? I meet so few people who suffer from episodes of an inflamed brain. Is the quality of the crazy different if it’s a chemical imbalance, rather than an illness-induced debilitation? These really aren’t the kind of questions I can ask most people. There is the possibility that I won’t ‘work through this phase’. What if I never truly get well? What if I have to live a different kind of life than I thought? What would that look like and would it be so bad?

In a sense, I’ve been given the gift of getting my priorities straight. What adjustments am I willing to make to concentrate on what matters most to me? And what matters to me the most? At the end of the day, how do I want to have spent my time? This is not an easy task. The options all have good and bad sides.  What irks me the most is the adjustment I am struggling with now: the loss of endless possibilities. The emphasis is on ‘endless’. That part of the equation is simple. I can’t do it all. I have to make the hard choices in order to stay healthy. This must be what makes Dad worry so much—he is far more aware of the implication of limited possibilities than I am.

What I must do is what I have always done, and that is to find the positives in relapsing. In that, I have boundless confidence. It’s what I do best, even with an inflamed, fragile brain (and for me, my brain is my vanity, my Achilles’ heel) and low, low self-confidence. As with all things Lyme, this will pass and I will feel better, at least for a while. If I can figure out my priorities and can handle my new levels of expectations, then everything else should be gravy, not the other way around.

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vacation

I like vacations. I especially like unexpected vacations, like the one I was just on. I say “unexpected”, but I mean “forgot about”. This happens to me more than you’d think. To many people, being sick IS vacation. There is the luxury of staying home and taking care of yourself. I don’t know what this says about our society, that a “staycation” can be as desirable as a vacation, but I do know that being housebound because of illness is no vacation.

I don’t quite remember how this vacation came together, yet here I was, two days before departure, bitching to Katie about leaving. I am one of those people who feel compelled to leave a clean house and yard. I know, no surprise there. It’s more work up front, but always worth it on the return side. So I was running around the house, cleaning and weeding and watering and organizing, and not packing a single thing. Was this vacation worth it? Should I be leaving at all? What was I thinking back in March? Oh yeah, I had planned on being well.

The journey itself is enjoyable to me. Something about solo travel makes me feel competent and free. The whole flavor of travel has changed for the better since becoming single. My ex was an impatient, tense traveler. I’m chill to the point of sending my itinerary to my friends because I can never quite remember the particular details of dates and times (see first paragraph—it happens a LOT). Still, I get myself from point A to point B with little fuss and trouble.

Some people, myself included, struggle with the idea that sickness deserves a vacation. The answer is emphatically yes. Serious illness gives few breaks, and a respite punctuated with illness is better than no respite at all. Or, as my friend Paul has said, “I can be sick in Paradise or sick at home. I choose Paradise”. I knew that many people would think going on vacation would mean I was better. I am better, but I am not well. I knew I would have some bad days, perhaps during, but definitely afterward due to the stress of travel and fun. What I didn’t know was how worth it going on vacation was.

Something else went on vacation, too. My medication schedule. I can do that with Lyme. Each bug, borrelia, babesia, and bartonella, has intense defense mechanisms (biofilms,  cysts, and hiding in tissues where there is no blood flow, like eyeballs and joints and the brain), so the protocol is always changing. Most doctors pulse medications in monthly bursts, to constantly hit them with something different. That means I can, theoretically, miss a week or so of most medicines and not mess up my treatment.

Almost all Lyme literate doctors use both pharmaceuticals and herbs to treat Lyme. The pills are easy. I can take up to seven pills in one gulp, if they’re not huge. The herbs are different. I mix all the herbs in a glass, 15 drops at a time. Then I put in maybe an ounce of water and drink it. Katie watched this once and said, “That smells like some foul shit.” A note about some of the stuff I take: it is some foul shit. I don’t think about how it tastes. I just chug it. I’m still trying to figure out what in my life made me such a champion medicine taker and I’ve got nothing.

I always feel a little bit naughty that first day I don’t take my meds. The freedom from that tedium is immense, I can’t believe how easy it is to NOT take medicine. I have them with me, too tethered to the thought of needing them to leave them at home. Sometime in the afternoon of day two, as on most vacations, something loosens inside of me. I don’t care what’s going on in the world. I quit checking my phone and my computer lies idle. The medicine migrated to the bottom of my suitcase.

Isn’t that the whole purpose of vacation? A rejuvenation of mind, body and spirit? Too often we pursue vacations with a grim purpose to pack as much activity and fun into them as possible, leaving exhaustion and frustration in the wake. I much prefer my friends’ pace: puzzles, hammocks, a vague daily plan which may or may not involve an actual activity, games at night, and the freedom to do whatever you’d like.

I got myself home with little fuss, and a small bonus: dinner with another friend. I milked a few more hours of vacation, and returned home to Katie and the dogs. That might be the best part of vacations for me—the moment I walk in the door of my own home. The smell is deeply familiar and comforting, as my home smells like both my childhood and adulthood. The dogs greet me as if I’ve been gone forever. Katie bounds up the stairs and gives me a hug. “I missed you!” I’ll start retaking my medicine tomorrow. Tonight I will unpack before I let out that final exhale of vacation, before thoughts of tomorrow, with schedules and chores, creep in.

 

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doublechecking

I like to google the side effects of the drugs I take. I used to do this several times a day, mainly because I could never remember what they were from hour to hour. I do it a lot less now. A month ago, some not so good symptoms crept back (a whole other google rabbit hole). I went back to the doctor and I started taking liposomal artemisinin, a Chinese wormwood derivative that is effective against malaria, babesia, and Lyme (babesia is often a Lyme co-infection) The liposomal part is a fatty matrix that stabilizes the artemisinin part and helps the body absorb the artemisinin. I’m also taking a few more herbs. Cumanda, an anti-bacterial herb from the Campsiandra Angustifolia tree in the Amazon is one. Cumanda is for neuroborreliosis,  or “Lyme brain”. I’m also taking teasel root extract. That one is from Dypsacus Sylvestris, a biennial teasel plant. Teasel root extract is a cyst buster and biofilm remover. See why I had to google this shit several times a day?

I wondered which one of these herbs was causing my brain fog, liver pain, fatigue, itching, stomach problems and achy bones. As usual, there is no definitive answers. Could be the liposomal artemisinin. Some of the symptoms might be from teasel root. Others might be from cumanda. Why do I care? It doesn’t really matter, does it? Either way, I have to take them, or the alternatives, Flagyl or Mepron, or any of the pharmaceutical drugs I have also used. They have some of the same side effects, and some others that are worse.

One of the things I’ve noticed now that I am noticeably better is the herxes don’t get easier. They are not as bad as they were earlier, but again, does it matter? Sick is sick. These are mostly walking around doing things and crashing later in the day herxes, so shouldn’t I be thankful for that? I should be, but I’m not.

Oh, I forgot the last one I’m taking now, MC-Bar-2. That one is for bartonella and is a medley of herbs like Skullcap, Jamaican sarsaparilla, cordyceps, Pau d’Arco, White Willow and more. I started to read about each ingredient, but stopped after cordyceps, a fungi that the Chinese grow on caterpillars (and I’m drinking that shit? GROSS!). Also taking low-dose naloxone, the drug they use to reverse heroin overdoses. They caution me against taking any narcotic every time I refill that one, but I happily down the little white pill in hopes that it does, in fact, boost brain activity in inflamed brains like mine.

Sometimes I wonder why I keep taking all this stuff. Then Lyme comes creeping back. Once bugs get in your system, it’s hard to eradicate all of them. Once Lyme goes untreated for any length of time, no one knows if you are ever “cured”. Each bug has unique properties that make them hard to eradicate. Cysts, biofilms, protein-changing strategies, even immune modulators in tick saliva,  It’s as though the ticks and the pathogens they carry form an evil synergy  designed to fool the human immune system.

I am not making this stuff up. I wish I were sometimes. The Lyme community debates the validity of herbs vs pharmaceuticals, IV antibiotics, diet, and alternative therapies, like rifing (a highly controversial technique using electromagnetic waves, the patient holds a metal cylinder in each hand, rather like a jumpstart cable for car batteries). The herxes  I experience tell me that the herbs work, sometimes more effectively than the pharmaceuticals. Sometimes  I wonder if I’ll be on some form of maintenance herbs forever. That wouldn’t be too bad, except that the herbs taste foul. They have to be taken on an empty stomach, with a small amount of water. I look at the mixture as a tastebud wake-up call.

Why do I keep looking up both the disease and the cure? I think I have to double check to see if a) I have Lyme, and b) I am still sick with Lyme. There is a third option. I have the ridiculous theory that since I have Lyme, I will get no other diseases. The sheer lunacy of this insures that I double and triple check my symptoms, making sure that I only have Lyme. You can die from Lyme, but it is rare, if it is treated. I had to google Lyme fatality rates just now. They are low, but phrases like “drastically shortened lifespans” and “death from secondary infections” pop up too often for my taste.

There can be no other reasons than these. It’s fucked up that I still need affirmation that I do have Lyme. I don’t want it. Is that why I do it? Maybe this time I’ll see that all these symptoms are not Lyme! It’s something else, something easily cured with a few pills. And don’t you think I’d be okay with being sick by now? Apparently not. <sigh> Google will have to continue to be my support group, because I don’t particularly like support groups. It’s not that I don’t want to share information. It’s the few people who seem to use the forum as an opportunity to whine on and on about how sick they are.

Ooh, that was kind of mean. I’m sure they can’t help it, and really need the support. I like a different kind of support. I like it best when people treat me normally, teasing and harassing me as if everything is fine. It is, mostly. Except when it’s not. Then I google away, double and triple checking. Just in case.

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fractious

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

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

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

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

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

 

 

 

 

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