Closer to the Heart

מִזְמוֹר לְתוֹדָה: הָרִיעוּ לַיהוָה, כָּל-הָאָרֶץ
עִבְדוּ אֶת-יְהוָה בְּשִׂמְחָה; בֹּאוּ לְפָנָיו, בִּרְנָנָה.
דְּעוּ– כִּי יְהוָה, הוּא אֱלֹהִים:
הוּא-עָשָׂנוּ, ולא אֲנַחְנוּ– עַמּוֹ, וְצֹאן מַרְעִיתוֹ.
בֹּאוּ שְׁעָרָיו, בְּתוֹדָה–חֲצֵרֹתָיו בִּתְהִלָּה; הוֹדוּ-לוֹ, בָּרְכוּ שְׁמוֹ.
כִּי-טוֹב יְהוָה, לְעוֹלָם חַסְדּוֹ; וְעַד-דֹּר וָדֹר, אֱמוּנָתוֹ.
–Psalm 100, “A psalm of thanksgiving,”

Yesterday, Sarah and I went to CFA for a 6-week sonogram. This is the point we hadn’t gotten to in the past – that is, in both of the prior pregnancies, it was a sonogram at about this point which determined that the foetus had died.

This time was different. Dr. Sacks was extremely blasé about it – “oh, here’s the baby, and there’s the heartbeat.” They didn’t give me a digital image, but it looks like this*:

I started crying right away – and only came back to the present when he said “let’s hear it,” and played a staticy audio – it was clear (at 112bpm).

I am grateful to have been brought to this place now, and like the psalm says, I will serve the LORD in joy.

I’ll try to stay in today, but daydreaming has a way of getting the better of me, and this sure sounds like the coolest thing ever.

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* Given the whole discussion about ultrasound and abortion in Virginia recently, the audibility of a heartbeat at 6 weeks throws the positions of the partisans into sharp relief.

Persistence of Vision

I had an odd interaction yesterday. A person wrote me out of the blue, looking for the version of Rorschach which used to get played on Big Monkey Comics’ Superhero Radio. See, I had first met Scipio, the proprietor of Big Monkey, when he was outside with his dog on Wisconsin Avenue. We chatted a bit, and I mentioned that my band did geek rock, and he mentioned that he did Internet radio, so I quickly got him a few early mixes from the sessions that would become To the Rescue!. Well, it turns out, and I had forgotten this, that I had given Scipio a version of Rorschach which had Anna singing on it rather than Noah (which ended up on the album), and this fellow liked Anna’s version better. So a trip down memory lane reminded me of why I couldn’t help him out: I lost all those originals to a spectacular hard drive crash. We had had to re-record Conception in B, Rorschach, and I had to pretty much re-create the electronica for Seven Layer Cake. So no file for him.

I have a sensation like the image which lingers after seeing a bright light: translucent and elusive – it’s a constricting narrowness, to look at the younger me, who wrote and played with abandon, and not remember what it’s like to feel that way.

I tried playing guitar last week. I made it about 15 minutes before my wrists rebelled. Perhaps it’s just a matter of de-conditioning, or perhaps something else, but it didn’t feel natural. I might force myself for a while: like making a kid sit through lessons, the discipline could bring enjoyment back. Or maybe it won’t.

I expect this to be a week of high emotional stress – part of me wishes I could lose myself in playing for a bit, but another part sees that as escapism. Then again, is escapism really so bad?

For as bad as my health trouble is (and I certainly don’t recommend it), I know several peers who have it a lot worse than I do – I don’t know whether they escape or not, or whether they have their version of the Bene Gesserit Litany on Fear:

I must not fear
Fear is the mind-killer
Fear is the little death that brings total annihilation
I will face my fear
I will permit it to pass over me and through me
And when it has gone I will turn to see fear’s path
Where it has gone there will be nothing
Only I shall remain.

I think Herbert was on to something when he wrote that – fear of pain is for me worse than pain. And yet the fear is such an insubstantial thing, but it has a way of focusing attention and capturing imagination which isn’t quite like anything else. It’s almost like a mental hard-drive crash, and that brings me back to where I started, except I’m perhaps a bit more aware of the cost of a crash.

Out of the Fry Lab…

The image is of a polymerase chain reaction (PCR) screen under fluoroscopy done by Fry Labs.  The bright blue dots are protomyxzoa, which is a relatively newly identified protozoan (roughly the size of a red blood cell!). 

Apparently, this is one of the big problems in Lyme-related biofilms, and this protozoan is both a catalyst and a protecting agent for the other bacterial components of the biofilm. 

The primary treatment for this is ivermectin, which is also the main ingredient in HeartGuard.  So now Kacy and I have multiple medications in common – yet again, I get the feeling I should be seeing a vet…

This does explain part of why I’ve been feeling so completely cruddy – neither narcotics nor μ-opioid receptor meds are doing any good against pain.  Interestingly, low dose naltrexone may prove to be a real help with this.  We’ll see!

Forever

Recovery from surgery is a drag. I’m not a good patient by any means- I’m more of an “impatient”- but the 80/20 rule applies to healing as well, and the long tail of debilitation feels to me like it is longer than it should be.

So one thing I tend to say to myself when I’m troubled by whatever-it-is, is “it’s not forever; it’s only for now”. (cue Avenue Q, “For Now”).

But I started thinking about this, and had the realization that “forever” is merely “now” repeated. Given our perception of time, that every day is today, and every time is now, what would it mean to differentiate between them?

Obviously, forever is a plural concept, but is it qualitatively different than “recently” or “soon” (likewise plural concepts, where they represent specific relational subsets of forever)?

Likewise, the proverbial formulation gam zu ya’avor (this too shall pass) implies a sameness between all of the various nows, the sum of which are forever.

I’m not sure where that leaves the “only for now” mantra: it’s certainly true, but is it trivial? Is there actually a perceptual difference between forever and now, or can that only be understood in retrospect? In any case, it is less of a salve than I would have expected.

Perhaps that expectation may be part of the trouble? Expectations in general cause more trouble than gain, and the whole difficulty here is unmet expectation of a complete healing, right now. So maybe this is a reminder that I am neither the first man created, nor was I there when God created the earth. My expectation of understanding causes difficulty, and this could be telling me that I should focus instead on my actions, and on acceptance of the realities which confront me rather than dwell on “how long?”

A phrase I will never use again

I would give my left nut to do/have X

I’ve said that blithely regarding items of extreme desire: often, musical opportunities or the like.

Given how close this came to reality today, that won’t pass my lips again.

Note: the following may be TMI but it is SFW and as not-gross as possible, although is extremely cringe-inducing. You have been warned…

Background: Sarah and I aren’t terribly into kink, but we’re quite literate regarding it (for no obvious reason). As an example, we’re much more likely to have heard about (or read about in a book) some random practice that Dan Savage will mention than we are to finding said practice the least bit enticing. This background is necessary because I had learned that there are in fact men who fetishize what I’m about to describe (if you look up “ball-busting” you will quickly get to NSFW stuff, but that link is Wikipedia), and I do not want to give the slightest impression that this is something we’re into.

Anyway, last night, I had a little bit of pain- well know to all men- that I had attributed to a bit of “congestion” for lack of a better euphemism. No big deal and a matter of routine which can be ignored or not.

And then something changed: I found I couldn’t focus for ma’ariv, and would have to stop and catch my breath in the middle of washing dishes, and I’d find myself on the edge of doubled over. This went on for a few minutes while I thought it would pass, but it didn’t.

Using the google, I quickly found the Mayo clinic’s wonderful site, specifically the pages about testicular pain.. There’s a couple of scary things there, and seeing it I got a bit scared. Between the pain and fear, I found myself both nauseous and having flop-sweat (which leads to chills but it took me a bit to figure out).

I woke up Sarah, who urged me to calm down and take deep breaths (good advice), and I eventually paged the on-call doc at my PCP practice. She responded a few minutes later, and after about a minute of description she said that I needed to go to the ER and that it sounded like testicular torsion.

To clarify the pain level involved, it would hit peaks and then back off a little. The peaks were as painful as (or more than) anything I’ve ever experienced, and they made the spinal tap, EMG, and all of the other recent unpleasant procedures feel like nothing.

So Sarah drove me to Sibley Hospital (because we’ve learned that Sibley, unlike some other hospitals, is both uncrowded AND staffed by people who really want to help patients feel better), and we got into the ER there. The ER doc did an exam & ultrasound to confirm the diagnosis, and then paged the Urology team and OR staff, and gave me some dilaudid (hydromorphone) to dull pain. That’s a pretty powerful opiate, but even it couldn’t remove pain: it just reduced my ability to focus on or care about the pain, which helped.

I was surprised to learn that you can’t feel ultrasound.

Another surprise: 1 ER doc, a Urology attending, a Urology resident, 1 ultrasound technician, and a couple of nurses- that is more people touching my junk in a non-airport situation than I wold have expected, and I wouldn’t have thought that I would be totally fine with it. I had no concept of just how quickly personal modesty preferences or quirks (for instance, reticence regarding using hand urinals in a bed while nurses are present) would fall away. We asked what could cause torsion, and while the most common causes are athletic (running & biking), it can happen randomly for no obvious cause. One nurse said that in 20 years, she’s seen 5 cases, so it’s not common, but also not unheard-of.

When they told me that I was going to need surgery, that the risk was possible loss (requiring amputation) of testicle(s), and that they were optimistic, I felt a LOT of fear. Thank God Sarah was there to comfort and support me – I have no idea how hard this must be for someone who is alone – she is a rock in a crisis, and she and I prayed together, and that helped calm me down. I don’t share Sarah’s ability to compose payer on the spot, but it is a great skill.

Lesson here: maintain a list in some easy to describe manner of the logins / passwords / account numbers etc, so that if you’re about to do something dangerous, this isn’t a concern. More important lesson: tell the people whom you love that you love them often- it was a comfort to me that I tend to do that, so there would be fewer things unsaid.

So the surgery came and finished- I was out before I knew what happened (no “count backwards from 100″ like I expected), and the next thing I knew I had a lot more pain and my throat hurt. I presume that the doctors visited in recovery, but I have no recall of that at all.

I had a tough time coming out of anesthesia- my blood pressure is normally low, and got low enough to trigger alarms several times, but the bigger deal was that the respiratory function (needs to be > 16 to not b a problem) would fluctuate from about 12 to zero, even when I would focus on deep diaphragmatic breathing.

We were told that the doc saw evidence that their had been torsion, but that it has corrected – either the ER doc had put it back, or the Dilaudid allowed enough relaxation for it to restore. Regardless, one of the treatments is the horribly-named “orchiopexy“, where the testis is attached to the scrotum so this can’t happen again, and that’s most of the recovery time.

Eventually we were able to leave, and I realized the problem with wheelchairs are that they really make you put your legs together (ow!). Stairs are also a drag, so I’m mostly living upstairs the way Sarah did after her ankle surgery.

The prognosis is good, but recovery isn’t fun: using the toilet while one’s genitals are bound inflexibly is unpleasant, and it’ll be a while before I’m allowed to lift Kacy (let alone allow her on my lap, which is where she wants to be. Happily, neither potency nor virility is expected to be impacted.

So the big lesson from this for men is twofold: first, don’t ignore intense testicular pain; second, marry a woman who is awesome and caring.

An Answer at Last!

I got my results today from Optimal Health, and now I have some results. I have confirmed cases of lyme, bartonella, strep (!), and a suspected case of babesia.

Apparently there’s a sign up in the microbial world: “come on in, the plasma’s great!”

Here’s the scary parts: first, both the really awesome rheumatologist and the excellent neurologist performed assorted Lyme tests, including of spinal fluid (!), and yet the infection did not show up on standard tests. This goes to show you that the standard tests completely suck. OHP uses Fry Labs, which has really, really thorough methodology of actually looking for organisms themselves. Here’s what Bartonella and the biofilms look like:

In addition, they use IGeneX labs which in their work provides a much more thorough Lyme analysis, looking at more bands and providing more detailed results, and this was how they confirmed my Lyme and got the inconclusive babesia.

Second, OHP’s working theory on this is that when I got the wicked-bad parvo infection in February, and swelled up, the steroid treatments I got (which were absolutely necessary, and reduced the swelling) dampened my immune system enough that latent infections were able to become active. They believe that tremendous numbers of people in the mid-Atlantic region have latent infections of this type, which cause subclinical symptom levels. Yikes.

Third, it turns out that both Lyme and Bartonella can be transmitted sexually, so it may be the case that I got this from Sarah, or perhaps she got it from me. This is an unpleasant line of reasoning, and I don’t think I’ll go very far down that path, but it needs to be more widely known, so that if one partner gets a confirmed Lyme, the other should get checked as well.

So then there’s treatment. There’s a whole bunch of dietary changes (argh – pizza is *so* far out…), a metric ton of supplements, along with two antibiotics and an antimicrobial solution. The OHP approach is “low and slow” – it’s designed to get rid of the parasites as fast as possible without killing the patient. Emotionally, I’d prefer the bazooka-size antibiotic dose, but that wouldn’t kill the infections any faster, and would just make me more miserable, so maybe that isn’t such a hot idea after all.

But in the words of a real American hero, “knowing is half the battle.”

We have met the enemy and he is us

Walt Kelly, who famously said the title of this post, did not live to see a specific case of this phenomenon. I just learned about the new FDA guidelines for doctors regarding opiate medications, and I’m not pleased with what I’m learning. As background, both my wife and my mother are disabled and suffer from chronic pain which can be pretty debilitating. I’m in the midst of a significant pain episode – possibly due to Herxheimer reactions caused be one of the 20 pills I took this morning (or maybe one of the 16 I took tonight – who knows?) – so as would be easy to imagine, making it more difficult for doctors to prescribe cheap, effective painkillers is not something which gives me a warm fuzzy.

I know about the abuses: about the so-called “doctors’ offices” which are the size of a closet, where “patients” are bused in from all over the country; I know about the straw purchasers and about how some of those meds can be crushed and snorted to significant effect; and I even have a family friend who is wrestling with the demon of addiction to opiate painkillers. All of these cases speak to a significant question: why are we doing this? Who, precisely, benefits? What is the harm we are trying to prevent?

When I’ve asked that question of multiple very smart people today, the answer I was given was “it’s a big problem if people take morphine and drive” – which of course has nothing whatsoever to do with whether they took it legally.

So I come back around to a more pointed phrasing of the question: given that many of the societal problems we are experiencing are the direct and indirect consequence of the prohibition regarding an individual’s use of these substances, is the cure worse than the disease? It sure looks that way to me.

Concentricism

I am filled with anger and frustration today. I got an email from the fellow who used to run one of the great venues for small-time local bands, indicating that he’s now the booker for a new club, and asking whether we’d like to come play.

Well, yes but, it just so happens that I can’t play guitar for more than 5 minutes without hurting myself, so I’ll have to take a rain check on that.

And then there’s the sudden, unpleasant GI distress, coupled with the back pain from the blood patch, not to mention the various and sundry unwelcome side effects of the pain meds, and all in all, it leads me to a pretty unwholesome place.

It feels like my world has gotten smaller all of a sudden: that the boundless possibilities I had merely last year are so far beyond reach. Hell, the ability to take public transit to work as a choice would be nice- I’m a conservationist and all, but I miss driving.

And the worst part of all of this? I still don’t have a diagnosis with more explanatory power than “you’re broken right now, but if we wait long enough, maybe you’ll get better on your own.”

So today is not a good day. Maybe tomorrow?

I’m a minority

apparently 30% of people get the “Spinal Tap headache” – this is basically like a particularly bad migraine which does not respond to normal treatment. The way you can tell if you have it is that it gets better (somewhat) when you’re lying on your back. Extra caffeine is supposed to help (check, but didn’t help much). So fortunately the neurologist is quite responsive: I get to have a blood patch tomorrow morning, and hopefully that will stop the symptoms (which are just below the “claw my eyes out” level).

It goes to 11

For those playing along at home, a spinal tap is pretty short: about 5-15 minutes of truly excruciating nausea-inducing pain. It is not a worse experience than the EMG, but it hurts more than any one part of it. Oh, and th effects linger: sitting up for more than a few minutes is quite unpleasant. The va’ad of greater Washington will be issuing a statement describing this as “not recommended.”

I’m particularly grateful for Sarah taking care of me: she’s the best blessing I’ve ever received.