Still fighting the fog

I’ll tell you right up front that writing this post has been a struggle. I’ve been trying to put it together for weeks but I keep finding myself blocked. Part of the problem is that it’s a long one…it’s been a long time since I’ve written about my treatment and there’s a lot I want to talk about. But the larger problem is my ongoing brain fog.

Sustained expressive thought has been extremely difficult for me for some time now. Interestingly, receptive thinking is not as hard. I can feel a clear difference between the two, although that difference can be tricky to describe. Reading seems like it’s mostly a receptive process, for instance, but it’s really not. Reading requires us to hold a set of themes or concepts in mind over a longer period of time, to engage in the expressive task of assembling meaning from the elements in a text. What I’ve found is that I can do pretty well reading short pieces like magazine articles – even if they’re fairly complex. But finishing a book has felt like an epic, nearly unachievable task.

These difficulties multiply when I try to write something of my own. When I try to imagine the shape of a piece of writing, I struggle with the cognitive work of holding  a series of related concepts in mind at once. In this post, for instance, I want to talk about a series of events (all of which happened several months ago) in my treatment and my day-to-day experience of living with chronic illness. In the first place that requires me to parse my experience during this time, identifying the moments which are most relevant and meaningful. And because I’m wanting not simply to chronicle my experience but to try to make meaning of it, I then need to consider what ideas and themes emerge from my experience, and to let my mind make associations to those themes so that they can guide the shape of an essay that develops.

I used to do all of this without much effort, certainly without having to think much about what I was doing as I was did it. But these days when I try, my mind grinds to a halt. That is literally what it feels like. I stop being able to think.

(What’s strange to me is that I’m pretty certain that by the time you’re actually reading this it’s going to sound pretty natural and effortless. I’ll have eliminated most traces of the struggles I’m describing. Because I’m not going to let myself sound like someone who is cognitively impaired. This creates a certain dissonance between my public persona and my inner experience. People often tell me that I don’t sound like I’m struggling cognitively. It’s good to know, but it’s also frustrating that people have no idea how effortful the act of thinking is for me, how much work it’s taking me not to sound impaired.)

The truth is, I can’t tell you how much time I’ve spent over the past year simply staring blankly into space. Dead time, in which I am aware of all the things I want to be doing without being able to do any of them. As I described in my book The Next Ten Minutes, I’m not a person who tolerates this sort of tedium well. In fact, it’s a sort of torture to me. Which is why I was happy to read Lyme advocate Ashley van Tol describes this aspect of chronic illness in a recent post about her experience with Lyme disease. “Honestly,” she writes, “being sick is really boring. Do you know what it is like to literally be able to do next to nothing day, after day, after day, after day?”

When people discuss chronic illness they usually focus on the pain, the physical limitations, the fear, the expense…all of which are very real issues. But personally, I could find a way to tolerate all of those things if I could just have my mind back.

 The good news is that I’m showing signs of improvement lately. Even cognitively. But the road to this partial improvement has been rough. Symptoms cycles persist and as always, trying to figure out the prognosis of my illness by looking at my symptoms at any given moment is not unlike trying to predict the future by looking at a pile of animal guts. Not (as readers of this blog are well aware), that I’m opposed to animal sacrifice in the service of healing from chronic illness.

Working with transference

In my last update, I talked about the overlapping anxieties I experience around each of my medical appointments. Since that post I’ve realized – again – that there can be good reason for those anxieties. Medical professionals are human, after all. Even the best of them sometimes they have off days. Sometimes they screw up. Sometimes pretty badly.

(That should give you some idea where this post is going.)

Given this fact it’s been helpful to me lately to reflect on the psychological phenomenon of transference, which plays such a powerful role in how we all navigate my medical treatment. It’s a concept which originates with Sigmund Freud, who described how, in the normal course of psychoanalytic treatment, inexplicably positive and negative feelings toward the analyst arise:

 We mean a transference of feelings on to the person of the doctor, since we do not believe that the situation in the treatment could justify the development of such feelings. We suspect, on the contrary, that the whole readiness for these feelings is derived from elsewhere, that they were already prepared in the patient and, upon the opportunity offered by the analytic treatment, are transferred on to the person of the doctor. (Sigmund Freud, Introductory Lectures on Psychoanalysis,)

 It’s safe to say that the core of most transference reactions comes from the feelings and hopes that linger from unresolved childhood experiences with our own parents. More specifically, as an attachment-focused therapist, I tend to see these transference dynamics as expressions of unmet attachment needs and attachment-related anxieties.

To put it more directly: deep within all of our psyches lies the fantasy of the perfect parent – the person who understands our needs exquisitely and without our having to express them, and who meets those needs unfailingly. Obviously this is not a realistic desire, but it’s a powerful fantasy and if you pay attention you’re likely to find it creeping out in many relationships in your life (not least of all with your actual parents).

Correspondingly, we all harbor within us some ancient and visceral sense (“memory” seems too refined a term for it) of our reaction to the failure of our parents to meet our needs. And that (picture an infant being denied the breast) in its rawest form is rage. The expectation of being disappointed (for we all come to develop such an expectation) also seeps into our everyday relationships. As much as part of us longs for the ideal parent, another part of us is always waiting to be disappointed.

In some of the more dramatic forms of psychopathology (borderline personality disorder, say), the oscillations between these two extremes become violently dysregulated. But in most of us, it’s a low-level force that operates subtly in our relationships, only occasionally getting more dramatically triggered.

It’s most likely to get triggered when our attachment needs get activated (i.e., when our need for either care or for autonomy is at its strongest), as inevitably happens within doctor/patient relationships.

As a psychotherapist, I’ve trained myself to be acutely alert to transference (and counter-transference) both within the therapeutic relationship as well as in my everyday interactions. That awareness is what makes it possible for me to stay level-headed when a client refers to me (as one recently did) as a Jedi Master. Because I can know that I am not in fact an all-powerful teacher but rather I’m the beneficiary of that client’s positive transference reaction. It’s also what keeps me from acting irrationally when I project the same sort positive transference onto the people who care for me, by, say, developing  a crush on my yoga teacher.

Because of their role in caring for others, medical professionals can be the targets of some of our fiercest psychological transference reactions – both positive and negative. And all of us who endure chronic illness would be wise to do a little work to understand the nature of our own transference onto our practitioners. Do we head into our doctor appointments filled with the unrealistic hope that we’ll receive a miraculous healing? Or do we brace ourselves, expecting to be ignored, dismissed, abandoned? I guarantee you that both of these fantasies are active in you to some degree, consciously or unconsciously, every time you interact with a medical professional.

It gets trickier when those fantasies find a foothold in the actual behavior of physicians and nurses. Because medical professionals are not pure vessels of therapeutic and diagnostic procedures. They are subject to their own psychological storms. They have the same fantasies and anxieties about care and being cared for that we do. Sometimes they really do perform extraordinary acts of healing. And sometimes they really are assholes. The point is not to ignore the reality of these actual behaviors, but simply to learn to figure out the difference between our fantasies and the reality in front of us.

In my particular case (and without going into a full-blown psychological self-assessment), I’ll summarize my version of this struggle by saying that my childhood experience imprinted upon me a deep fear of expressing a need for care to others, which is reinforced by a stubborn expectation that expressing such a need will lead to my being dismissed, ignored, and shamed. That expectation doesn’t extinguish the need, however. It just drives it underground where it grows more fierce.

As a result, even when I’m at my best I’m always scanning hyper-vigilantly for any sign that the person who is supposed to be caring for me is uncaring, dismissive, scornful or simply inattentive. Some part of me is always ready to slam the door on the relationship at the first glimmer of disappointment.

And I suspect that I’m not alone in this experience.

Agitation

So here are the series of developments which wound up putting  all of this lovely theorizing to a real-world test.

First, there was the process of getting blood drawn for the new tests (for mold and fungal infections) that my doctor had ordered at my last visit. These tests, it turned out, were highly specialized and the doctor wanted them done by a particular lab. After several fruitless visits (fasting, of course) to the lab at my local hospital, and many phone calls, I finally located a doctor’s office here in Missoula who worked with the right lab.

At the same time, I’d been phasing in all of the new medications that had been ordered at that last visit. I phased out Rocephin and Tindamax, and started a new cocktail of Rifampin, Septra, Plaquenil and Lamisil.

A few weeks after I’d phased in all of these new medications, I started to experience a confusing shift in my physiological and psychological state. One night I found myself agitated, unable to sleep. I was up for a lot of the night and I braced myself for a difficult time the next day. But oddly, I didn’t feel tired during the day. Rather, I continued to feel agitated and restless, like my metabolism was revved up.

This was very unusual for me – I usually need lengthy naps in the afternoon – and stranger still was the fact that this state continued over the following days. It wasn’t some momentary anomaly (of which Lyme has created many). It was a distinct shift in state.

The most disturbing aspect of this shift was that it gave rise to an anxiety which was very difficult to regulate. Now, as I’ve described in the past, I’m no stranger to anxiety. I’ve got an anxious temperament and I’ve had doctors try to blame all of my health problems on that anxiety. But, as I’ve also described, I’m on pretty good terms with my anxiety. I’ve worked with it for years and it no longer disrupts my life in any significant way. My anxiety and I understand each other well, and with the help of a great deal of psychotherapy, we’ve learned to coexist.

Which is how I knew that what was happening to me was unusual. This wasn’t the anxiety in myself that I knew so well. As I observed my mind, I saw that the content of my thoughts was no different than usual. I was worried about the same things I always worry about: health, money, relationships. The difference was that I suddenly found myself to be unable to manage that worry. Now it seemed to be driven by a physiological shift that I couldn’t control.

I realized that my mind wasn’t actually anxious, but that my body was mimicking the physiological state of anxiety, which was fooling my mind into behaving anxiously.

Understanding that helped to keep me from getting completely swamped by anxiety. But it still took a lot of energy to keep my head above water.

Then a call from my local doctor confused matters more. I continue to have blood work done every three weeks ago, to check on a number of different baseline levels in order to be certain that none of the meds I’m taking are causing any damage – in particular, liver trouble. Mostly I didn’t hear anything about those tests and I assumed they were all normal. But it turned out that the most recent results showed that one of my thyroid levels had risen distinctly.

What made this particularly strange – aside from the fact that I’d been on a consistent regimen of thyroid medication for years which had kept these levels in a tight range – was that while my subjective experience (agitation, anxiety, a revved-up metabolism) would indicate that I might be hyper thyroid, the test showed that my blood levels were in fact hypothyoid.

Very strange. My doctor didn’t know what to make of it, and she wanted me to talk with my Lyme doctor about it, due to all the possible complications with the medications I was taking.

So I called.

Now I rarely call the doctor in between scheduled appointments. That’s part of my transference reaction toward doctors – anticipating that I won’t be cared for adequately, I try to minimize their perception of me as an overly needy or demanding patient. It’s a bit of subconscious bargaining that corresponds with my attachment history: if you care for me well enough, I promise not to need you too much.

So when I do call, there’s a good reason for it. But this call was, to say the least frustrating. I spoke to an office worker I didn’t know, who in turn communicated my concerns to one of the practitioners, then conveyed their response back to me. (In other words, it was literally a game of telephone.)

          Throughout the call I had the distinct feeling that I wasn’t really making myself understood…that I wasn’t being understood. And that is a significant trigger for me in terms of the transference dynamics that I’ve been describing here. Not being heard puts me in a bind. If I protest too much I worry that I’ll alienate my caregivers and lose the care that I need. If I don’t protest, then the whole interaction becomes a pointless pantomime, in which I’m accepting advice which is not grounded in an accurate understanding of my complaint. I try to thread that needle, but I know that when I’m under stress I err on the side of not advocating for myself enough.

I was looking for something specific in that call. I was seeking to tap into the collective experience of this office in treating tick-borne illness, to be able to put my symptoms into some sort of context. Was this a symptom they saw commonly? Had they seen other patients react to medication like this? Or did it seem to them like an anomaly?

But when I described the agitation that I’d been experiencing they responded that I was experiencing a “flare-up.” Given that what I was describing was a new symptom, this seemed to me an utterly non-sensical term. A flare-up of what?

It felt like a brush off.

That frustrating call – I never felt like they had an accurate grasp of what I was describing – ended with several concrete suggestions. They sold me a supplement with the idiotic name RelaxMax (I’ll save for another day my rant about the conflict of interest involved in doctors’ offices selling supplements to their patients) and asked me to try that for a while. If it didn’t help, they suggested stopping the Rifampin for a few days to see if that was causing the problem.

In spite of my frustration with the call, I was willing to give these suggestions a try. The RelaxMax didn’t affect the agitation in any noticeable way. So I moved on to Plan B and stopped Rifampin. Doing this heightened my Lyme symptoms so much, so abruptly, that I never had time to figure out whether Rifampin was the source of the agitation. After a few days I started it up again, relieved to at least have figure out one thing: Rifampin seems to be a good drug for me right now.

That left me with the agitation, which it seemed to me was something I would just have to live with. At the end of the call to the doctor’s office they told me to call back if these two solutions didn’t help. But given how frustrating that call had been, I wasn’t motivated to go through it all again. I’d just live with it. Which is what I’m continuing to do. Months later, the agitation has calmed down somewhat but not completely. I’m back to my exhausted afternoon naps, but if I’m not careful my ever-day worries can still spin too quickly into panic.

Preparing for the phone consultation

Several weeks after that impromptu call, I had my next regularly-scheduled phone consultation. Ahead of every doctor’s visit and phone follow-up, I prepare a summary of my current condition and symptoms, along with a complete list of the medications and supplements I’m taking. I fax all of this to the doctor’s office a few days before the appointment. (They shouldn’t need a list of medications from me – they should have that – but I send it anyway just to be completely sure that they have the correct information, given how many meds I’m taking and how often they change.) I put a lot of thought and energy into these summaries, in the hope  that they will provide the proper focus for the clinician, that we won’t waste time while he or she gets up to speed about what’s going on with me. We can hit the ground running.

The other reason that I focus so much energy on these summaries is that the appointments themselves always makes me anxious. Why? Once again, it all comes down to transference. I’m acutely aware that for the next fifteen or thirty minutes I’ll be engaged in a relationship in which I am seeking care from another human being. And as a result, all of my attachment anxieties are activated.

I know several things about myself when it comes to medical care. I know that ahead of any interaction with any medical professional I will struggle with fantasies of both perfect care and absolute disappointment. I know that the latter is a stronger fantasy than the former. And knowing this, I do my best to hold both of these notions in check so that I can be as clear-headed and realistic as possible during those interactions, in the hope of being able to accept the care that is actually offered while simultaneously being realistic about the fallibility of my caregivers.

I do my best to stay conscious of all of these dynamics, to remain aware of them without giving in to them. It’s emotionally exhausting, but absolutely necessary if I’m going to express myself clearly and hear clearly what is being said to me during these appointments. (Transference, by the way, is yet another reason why I always record my appointments. What I think was said to me during an appointment, and what I actually hear when I listen back to the recording are sometimes strikingly different.) I think I’ve gotten pretty good at rising above myself, at letting myself be cared for in the face of these unhelpful dynamics.

This month the call was scheduled with the doctor’s assistant, who was the first person who had treated me at the office and with whom I felt I had a decent rapport. There was nothing in particular about her personality, in other words, to trigger my anxiety.

In my summary to her ahead of the call I described my ongoing symptom cycle, which, although possibly incrementally better, was largely unchanged since the previous appointment. I emphasized several issues that I needed to discuss. The first was my elevated TSH level on my last blood tests. Second, I wanted to hear from her about the results of my blood tests for mold. I was mildly annoyed that the office hadn’t communicated the results of those tests, but I set aside that annoyance knowing that I’d have the chance now to discuss them. Finally, I described a brief anomalous period of cognitive clearing which happened shortly after I’d started on Rifampin. For several days my thoughts began to flow again. It was a remarkable experience, which put me in mind of the movie Awakenings. I had ideas about things I wanted to write, and I could see the shape of those projects. I began mapping out ideas in my notebook. It was my brain functioning the way it used to. Then it went away. And losing that clarity was an exquisite sort of torment. It seemed a hopeful sign that it had happened at all, but it was puzzling and maddening that it had proved to be to fleeting. In the end, I simply didn’t know what to make of it.

The Consultation

From the first moments of the call I could feel that something was off. As a therapist, I’ve got a pretty good ability to read another person’s level of emotional regulation…and there was just something out of balance in the assistant’s tone of voice, in the rhythm of her speech.

Sensing this, my anxiety bumped up a notch. As I’ve described, part of me is always on guard against the moment, in which it is revealed that my caregiver is unable to meet my needs. I tried to damp this down. If she’s not at her best, I told myself, I’ll have to work a little harder at this. It’ll be okay.

“So,” she started, “it sounds like the Rifampin did good things for you.”

With that statement, my anxieties began to find some purchase. I’d described the experience starting Rifampin as an anomaly, but she’d taken that as a summary statement. It made me wonder how closely had she actually read what I’d written.

“Well,” I said, “I had a couple of good days there. But I haven’t had any since.”

She tracked through the evolution of my symptoms in more detail. She asked about my sleep. My sleep was okay, I told her, but the agitation that I was feeling during the day was still quite bothersome.

“So your local doctor thinks that it’s about an interaction with the medication?”

“No,” I corrected her, increasingly aggravated at how wrong she was getting things. “That was a concern about the thyroid levels. She also wanted me to talk with you all about that.”

She asked me what specific levels had been tested.

“You should have the results there,” I said. “She faxes them to you.”

I listened as she shuffled papers.

“I don’t see those lab results in your chart here,” she said.

My frustration ratcheted up another notch.

She made a vague comment about the possibility of drug interactions. I grew more direct.

“You need,” I said, “to have those tests results in front of you.”

But she didn’t, and in that moment there was nothing to be done about it. So we moved on.

“You also had mold tests done,” she said.

“Yes,” I said, “and I’m really anxious to hear about those results. You should definitely have those in front of you there.”

More shuffling as she found the papers.

“There are two parts to the testing,” she explained. “The first tests for the presence of mold antibodies. They’re scored on a 0-5 scale and you were reactive to some of them.”

It was hard to focus on the content of her speech because I was so distracted by the process of the conversation. She clearly hadn’t reviewed my chart or my test results before the call. She was figuring things out as she went along.

She moved on to the next part of the test, the Shoemaker Panel, which she described in some detail. Then she said something that rendered all of that explanation irrelevant.

“Unfortunately,” she said, “that part of the test wasn’t run because they didn’t have ripe samples of your blood. So we might have to re-do some of these, she said, to get a more clear picture.”

“Right,” I said. I felt furious at this point, but too off-balance to know what to do with my anger.

She continued. Had this visit been in person she might have seen from the look on my face how distressed I’d become. But over the phone she seemed not to notice.

“So the tests show you are reactive to some of the mold antibodies,” she said. “And fatigue and brain fog are some of the biggest symptoms we see with mold.” She noted that I’d been put on Lamisil, which addresses some of these issues.

“At this point,” she said, “I’d like to put you on a medication called Cholestyramine.”

As she launched into an explanation of what Cholestyramine is and how it’s used as a neuro-toxin binder, I felt my head spinning. I was forced to literally interrupt her, to remind her that she had put me on Cholestyramine at my initial visit, but that the doctor had just taken me off of it at my most recent appointment.

“Whatever you all think I should be on is fine,” I said. “But I just want to make sure that you’re not just moving me back and forth between things without one person knowing what the other is doing.”

She reversed course without acknowledging her error. She moved through a seemingly random set of questions about symptoms and reactions to medications. She asked about oral thrush. She asked about how I’d done when I’d stopped Rocephin. She talked about Bartonella and asked about pain on the bottoms of my feet, night sweats, vivid dreams. She said she wanted to put me on a new supplement, the amusingly-named BLT tincture. She took me off of the anti-fungal (Lamisil) that I’d been taking and she called in a prescription for Sporanox instead.

“Any questions?”

Oh, I had questions. But at this point all I really wanted was to get off of the call.

After I hung up I felt agitated, frustrated and frankly a little scared. The call had been a complete mess. I felt the two sides of my transference competing within one another. Part of me was ready to bolt, to abandon my treatment altogether. Another part of me wanted to minimize my caregiver’s obvious failings. That part of me was ready to bargain. This is lousy care, the logic went, but if I rock the boat I might not get any care at all, so I’d better just go along with it.

As these voices did battle in my head, I did the thing that I know to do when my attachment anxieties get so fiercely activated: I made myself wait. A few hours, I told myself, a few days. Nothing had to get figured out right at this moment. Let it settle out inside me. I’ll give myself time to tease apart old anxieties from the present situation. I didn’t have to do anything right away. I had time to figure it out.

The morning after

The next day, I still felt upset but the intensity had diminished. I went to pick up my new prescription.

My pharmacist, whom I love, leaned over the counter urgently as I approached.

“I didn’t fill your prescription,” she said, “because this drug they want to put you on has a huge interaction with something you’re already taking, your statin.”

She went on to describe the awful things that could have happened if I’d been allowed to take Sporanox and Simvastatin at the same time. Severe kidney damage from the break-down of damaged muscle tissue. Rhabdomyolysis. It’s right there on the drug’s information sheet, plain as day:

Human pharmacokinetic data suggest that SPORANOX® (itraconazole capsules) inhibits the metabolism of atorvastatin, cerivastatin, lovastatin, and simvastatin, which may increase the risk of skeletal muscle toxicity, including rhabdomyolysis. Concomitant administration of SPORANOX® (itraconazole capsules) with HMG CoA-reductase inhibitors, such as lovastatin and simvastatin, is contraindicated.

“I’ve called your doctor,” the pharmacist said, to ask them what they want to do. But I’m certainly not filling this one for you.”

With that, I reached a point of crisis regarding the continuation of my care. I was deeply shaken. This wasn’t just inattentive care, it was dangerous neglect. It confirmed my sense from the day before that the assistant hadn’t done the basic work of reviewing my chart before discussing my care and making treatment recommendations. She’d neglected to do one of the most basic tasks that anyone needs to do when prescribing any medication, which is checking for risky drug interactions.

If my pharmacist hadn’t caught it (and if I didn’t have an exceptional pharmacist it might well have been missed) I would have added another debilitating illness to everything that I’m already struggling with.

I needed to do something. Yet even in the face of this awful error, the idea of changing providers felt overwhelming. I didn’t want to change. I wanted this office to acknowledge it’s errors and make it right. But I needed to figure out whether I could trust these professionals with my care at all. Which meant that I needed to figure out a way to figure that out.

As I described my dilemma to a wise colleague, she gave me some very good advice. Put it in a letter, she said. Lay out what happened. But don’t do all the work for them – ask them to address the issues but don’t tell them exactly how. Give them the chance to rise to the occasion and that will tell you whether they’re able to own up to their mistakes and repair the relationship.

That’s exactly what I did. And through a series of interactions, things have worked out. In fact, they’ve worked out quite well. I feel happy about how I approached the situation and about the letter I wrote, which I ultimately allowed me to navigate between the twin transferential risks that I always carry with me as a result of my attachment history – abandoning all hope of care, and abandoning advocacy for myself.

In my next update I’ll post the text of that letter. I’ll describe the response it generated. And I’ll discuss how I’ve moved forward from this seemingly impossible point.