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.

Share

mental

I’ve been thinking about suicide a lot lately. Wait, don’t panic! Not in a real way, but in a Lyme way. There is a difference, and it is significant. Psychiatric problems from Lyme are well-documented and common. After all, there are, quite literally, bugs in your brain, wreaking havoc. So when I say I think about suicide, there is a layer once removed from actual thought of suicide. My recent psych problems dovetailed with an article I recently read about a family who has five sons suffering from Lyme. One took his own life. He was twenty-four. https://www.lymedisease.org/touched-by-lyme-when-the-perfect-storm-is-too-much-to-bear/

For me, the jags of crying, depression, anxiety and suicidal thoughts are  unwanted  surges in an unwell brain. The trick is to hold on and wait until the storm subsides. You might ask how I know this to be true. I’m not sure why. It could be a product of age and a lifetime of introspection. If I were much younger, or not used to examining my thoughts, I might think this was a real crisis. I’m not saying I haven’t felt depression and anxiety as true emotions. I have. The nature of Lyme neurological problems gives these feelings a different flavor.

When the surge subsides, it is though it never happened. There is no residual fallout, nor is there guilt, or lingering thoughts, another reason I know they’re not real. The inflammation Lyme causes acts as an electrical probe that homes in on the parts of my brain where emotion lives. It is more annoying than anything. A thought will pop up, unwanted and unconnected to much of anything (unless I’ve been on Twitter reading about the GOP and Trump), and lodge itself in the forefront of my brain for a few hours or a few days. I will cry at nothing. I might watch a cheesy movie, or watch videos like people reuniting with their dogs to help release the tears. It is a physical, not emotional reaction when Lyme is the cause, and I feel relief after crying. The depression/anxiety part is exceptionally frustrating. In the past, pre-Lyme, I sometimes got mildly depressed, and very, very occasionally experienced anxiety (like before my graduate school lecture, duh) but never in an irrational way. If you suffer from either of these regularly, wow. You have my deepest sympathies. My anxieties drift into obsessions, like buying lottery tickets or never leaving the kitchen dirty overnight. They don’t make sense, but it’s easy enough to pick up tickets or clean up.

I have never, not once in my life, thought seriously about suicide. I would go so far as to say I didn’t understand why anyone would want to take their life, until one cold February day two years ago when I was extremely sick, and had been for over a year. I realized I could easily reach a point where I wouldn’t want to go on if I knew I would never feel better than I did that day. This newer phase of neurological problems is more abstract, less direct and real. I’m not explaining myself well here. All I can say is that the flashes come and go quickly, and they don’t touch me deep inside. I’ve moved from being upset about them to being intrigued. What is happening in my Lyme brain? I’d love to have an MRI while I’m in the grip of what I call my Lyme neuroses/psychoses.

This is NOT a cry for help or a ‘poor me’ moment. It is an attempt to explain one of the more bizarre Lyme disease symptoms. I’m not embarrassed to talk about this the way I would be if I didn’t have Lyme (and that’s a whole other topic, why most of us would rather talk about our sex lives or money than admit to suicidal thoughts, anxiety and depression). It’s one of the dozens of strange things that Lyme does to my body, like my aching teeth and liver today. I didn’t recognize what was happening at first. Once I did, he imagery that came to my mind is from an old Star Trek movie, the one where Khan puts a worm in Chekhov’s ear. https://youtu.be/3i42Smtbmeg

Each reaction in my body becomes something I deal with. My coping skills have moved into gold-medal territory by now, honed by injuries, endometriosis, surgeries, and now Lyme. As for these particular symptoms? Marijuana blunts them, housework makes them bearable, and sleep removes them entirely. I cook, or watch stupid TV, or rage against Trump and the GOP on Twitter. I drag myself to work and forget about Lyme for a short while. I go out with friends if I can, and listen to their lives. I walk the dogs. I write obsessively and badly. One day I’ll wake up and my brain will have regained its’ equilibrium and clarity and I’ll get back to fully living for a while until the next cycle comes. Then I will go back to my mad coping skills until the storm passes once again.

Share

Stalled

I been holed up lately, because there’s not much to say right now. Yes, I’m still sick. No, I don’t know if I’ll ever be completely well. No, there’s really no clear path or prognosis for me. Yes, it sucks. The uncertainty and grind of being sick for so long has started to wear me down a bit emotionally. Since I can’t change the fact that my future is not predictable or stable, I have to change the way I look at it. This is euphemistically called ‘adjusting my expectations. What a loathsome phrase. We all know it really means ‘tough shit, your life is not the same, it’s never going to be the same, and you’d better fucking get used to it’.  After four+ years of Lyme, I am stuck in the ‘almost well’ category. Why? Who knows. Maybe I’m not trying hard enough. Maybe my body reacts to things differently. Maybe there are other factors in my environment. Maybe I’m one of the unlucky few that just can’t quite get well.

It doesn’t really matter at this point, the adjustment has to be made. I’ve been working on accepting that I managed to get a serious illness since the onset of Lyme. Lyme keeps moving the bar and fucking with me. I get better, something pops up, I get sick again. What is truly mind-boggling is how obtuse I can be to the cycle.

It’s a level of stupidity that I can only ascribe to both Lyme and my own inclination to turn a blind eye to bad things. The signs are all there: I forget dates, I’m exhausted, I cry at nothing, I can’t concentrate, my neck hurts, my hands throb, and my teeth hurt. The same damn things every time and still I’m blindsided when I have another relapse.

After that, I accept the fact that I have to hoard my energy, and always plan for the worst. It makes my social life unpredictable and my working life difficult, but I do it, and without too much fuss. Emotionally, though, I struggle every day with adjusting. This is where I stamp my foot an scream “but I don’t wanna!” Lyme doesn’t give a rat’s ass what I want.

Picking which adjustment has been the hardest would be impossible. Is it that I can’t work full-time? Or maybe that I can no longer just up and do something. Perhaps it’s the uncertainty that if I DO do something, I might not get out of bed for a few days. It also could be how weak and puny I feel about myself when I get sick once again, as if my body is betraying me again. Maybe it’s the guilt I feel about constantly cancelling out on friends, or ignoring their emails, texts or phone calls because I just can’t summon the energy to talk to them like a normal person. It could be all these things, but I think the main thing is if I adjust, I am admitting I am an irrevocably changed person from Lyme disease.

For one thing, my life is much quieter than it was. It is amazing how having to parcel out your energy gives you a laser focus on what you want or need to do. I suppose I could blow off taking care of the house for a more active social life, or I could give up everything else and work full-time. Or I could simplify my life until I only have the essentials and free up time from maintenance for something else. Most people have to make some of these decisions, but not to the extreme that I do. When I decided to celebrate Thanksgiving and my birthday, it took four to five days beforehand devoted to resting and taking care of food and cleaning. Even then, I was knocked out the Sunday and Monday after Thanksgiving and my birthday party. It is ridiculous, and I hate it.

However, hate is an emotion that wastes a lot of energy. In fact, all extreme emotions use up energy. Love, hate, sorrow, anger, all suck the vitality right out of you, so they are best doled out in tiny portions. Bonus: I don’t have the energy to sweat the small stuff.  It’s been tremendously hard to wrap my brain around the various labels ‘adjusting’ conjures up: disabled, chronically ill, and malingerer come to mind. Once I get over that, I might be, no, I will be in a better place. If I know this to be true, then why is it proving so difficult?

Share

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.

Share

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.

 

 

 

 

Share

lapses

Now that I am attempting to resume my interrupted life, I’m discovering a few things. Earlier in my life, I had many surgeries, mostly for having a reproductive system, but also cryosurgery to repair a torn retina and ACL replacement. After each of those surgeries, there was a period of time that I simply lost. Things were misplaced. Bills were not paid, or paid twice. Books were read and completely forgotten. Lyme brain fog is an entirely different animal. If I ever wanted to know what early Alzheimer’s, psychosis, deep depression or OCD were like, I’ve found out. Lyme mimicked all of those things at one time or another, sometimes at the same time. My brain was, quite literally, inflamed.

I’ve struggled to explain what an inflamed brain is like. At one point I felt as though I were on tranquilizers and paralytics while drunk. Other times I felt as though I were on a never ending acid trip while severely depressed. There were still other times that I felt like I was coming out from general anesthesia. None of it was pleasant. It also lasted for SEVEN MONTHS. Not every once in a while. Every. Single. Day. If you saw me during this time, count yourself as one of the few. I hid myself away as much as possible. I had hours of lucidity, the occasional rare day of partial sanity. That was almost worse, because I would realize what was happening.

These were the months of scribbling in my notebook, trying to keep track of what was happening to me. These were the months of letting Katie lead me around the grocery store, helping me make decisions and handling the payment and bags. These were the months of moving from my bed to the sofa back to bed, watching bad tv or listening to music or simply existing, like an eggplant or something.

I haven’t always lead with my brain. I don’t know why not, other than I took my brain for granted. I have never taken my looks for granted. Is there a difference in the way men and women are rewarded for having brains? Most certainly. Are some people threatened by other people’s intelligence? Definitely. What I didn’t realize is how much of my personal identity is tied up into being smart. It is probably the most valued asset I have (that, and my optimism). To lose what you perceive as your greatest strength is devastating. You can’t articulate what your fears are because your fears have come true: you’ve lost your marbles.

The nice thing about an inflamed brain is that you’re not quite aware how fried you really are. Things sort of melt away. Days drift along, one much like another, a wet, gray blanket of blankness. The minute you can think, depression and anxiety crowd out rational thought. For me, medical marijuana and bad television made the worst days if not tolerable, survivable.Schedules and goals, no matter how small, helped, too. Get up. MAKE THE BED. Make coffee (Decaf now <SIGH>). Eat something. CLEAN THE KITCHEN. Go back to bed. Sleep. Get up. Stare at the TV (it’s interesting that, like everything else from this time, I have the memory of watching but none of the details). Try to walk the dogs. I actually accomplished this almost every day, even if it was less than a quarter mile. The dogs have been stalwart companions through all of this, and  their companionship made my life immeasurably richer. Unconditional dog love is real, people!

My mental faculties are returning. I still have lapses. I talked to a patron at the pool this week. She asked me if I had read Eudora Welty. Of course I had, I knew this as a certainty. However, I could not recall one title, one plot line or character. Holes remain, and I don’t know if they will refill or simply disappear. Memory is a slippery creature at best, Most of us simply trust that what we remember is true, we don’t delve too deeply in the mechanics that make it so, nor do we give credit to memory as personality. After all, who are we if we don’t have memory and thought? I lost both temporarily, and it was like I had been erased.

Share