Musings


I am not a particularly imaginative person. I am instead better at observing, synthesizing, and interpreting data. To encounter unquantified mystery and produce novel results is generally beyond my ken.

I’m fairly equivocal about this truth most of the time. I lament that it causes each song I write to end up sounding and feeling a lot like every other song I’ve composed, but apart from that and my comprehensive inability to pen fiction, I don’t find it really interferes with my quality of life overmuch. It has instilled in me a reverence for people who do possess that kind of visionary knack. It is curiosity and courage wed to intangible inspiration and it is the closest thing to magic that we can encounter with regularity.

There is after all an upside to this lack of imagination; though I conjure worst-case scenario fantasies as readily as anyone, it turns out most of what I come up with is fairly tame and doesn’t begin to be as awful and crippling as some of the things I hear other people fret over. I worry about my daughter crashing my car and my insurance rates going up – her father worries she and everyone involved will be decapitated. For example.

That being said, when I have access to that data I like so much, I can work myself into a FRENZY OF CONJECTURE based on the available information and outcomes I can gather from various sources. I thank my training in the scientific method for the ability to verify with rigor the quality of the data I encounter; this saves me a lot of time on the internet trapped in the equivalent of a bad drug deal:

“No, man… I just came in here looking for a peer-reviewed research paper about treatment modalities for this syndrome. I don’t want to see your lesions. Or hear about how Melaleuca cured your pancreatic cancer and post-nasal drip all at once. Nope… don’t want to hear about the healing power of Jesus. Or to show you my boobs.”

That being said, with the exception of things like Celiac – for which there are blood tests and a distinct treatment protocol – the nature of a lot of gastrointestinal ailments are such that they are notoriously hard to diagnose, have multivariant symptoms that overlap, and rarely present a clear mechanism of cause or cure.

Crohn’s Disease is one of the slippery kind. It was first suggested as a possible cause of my distress back in early October of 2014. I had been having symptoms off and on – much more off – since about 2010. I chalked it up to a wide variety of causes before it finally became clear there was something systemic going on that wasn’t just going to resolve on its own. Some of the highlights of conjecture:

  • Food Poisoning: given the rather dubious quality of my diet, this was of course a natural place to begin. Problem here being that I was eating much the same crap all the time and only having wrenching gut pain and firey liquid excrement as an (ahem) outcome once in a great while.
  • Antibiotic Poisoning: this one was very convincing for a long time. After being hospitalized for a serious pelvic infection, I was put on IV antibiotics for 4 days and then a course of other equally nuclear pills for the following 2 weeks. I am absolutely positive it killed everything in my microbiome dead as a doornail and I have never been quite the same since. I do think this is at least a point in the map of the constellation of conditions which lead me to where I am now gut-wise.
  • Food Allergies: eliminating dairy, being tested for gluten intolerance all yielded nothing, and like the food poisoning, it was so intermittent and seemingly unaffected by what I was or was not eating it didn’t really ever present a compelling case.
  • Endometriosis: in this particular case, I did in fact have stage four (!) endometriosis and a bum ovary. However, their treatment and removal did nothing to abate the symptoms I was hoping to alleviate. On the whole, my quality of life has improved in lots of other ways since I lost the extraneous ladyparts, so I see that as a net win, but it wasn’t the answer I’d hoped it to be.
  • Porphyria: I was never sure about this one, though my doctor insisted we test for it. Minus the hallucinations, I wasn’t convinced. Lots of other symptoms did fit, but I could never quite see King George and me really having that much in common.

So this list of options eliminated, no less than 4 different kinds of pipes, tubes, and cameras strung through various openings in my intestinal tract, and 9 months of increasing physical and emotional distress I was last week finally vindicated to hear my gastroenterologist concede it was “almost certainly Crohn’s.” This continued equivocality would trouble me more except that this turns out to be the most definite she is allowed to get without an actual tissue sample. Obtaining such would require yet another possibly-fruitless trip up my bunghole, and since I am the opposite of keen on that, it’s what we’re going to work with for now.

This kicks into motion all sorts of contingencies that I wasn’t quite able to be sure were the right course of action for me. Being both viciously sick and held in abeyance all these months has been incredibly difficult physically, emotionally, and psychically. Everything felt futile and interminable and unknowable. Simply having an answer – even a hard one with long term consequences that are Decidedly Not Awesome Mostly – is still far better than the aching sensation of searching for a horizon that cannot be seen for the glare of blistering uncertainty.

It’s not what you thought, when you first began it

More, it frees me to collect data – very specific data – about my condition, my treatment options, and what lifestyle choices I can make that will best support my ability to heal and minimize future insult to my system. So much of what was frustrating was the sense that any action I took would be a wild shot in the dark as likely to cause additional distress as any kind of relief.

In fact, much of what I had been doing to try and “improve” my diet over the last few years likely contributed – not to the cause, which is autoimmune after all– to the exacerbation of my symptoms. Eating a varied high fiber diet loaded with nuts, olives, berries, and coconut all turns out to be really hard on the lining of the intestine afflicted such as mine.  My previous tendency to eat fast food 6-7 times a week, though obviously less than ideal in many other respects, was still in the main less problematic for my compromised GI tract to process.

Oh, the irony.

The “low-residue” diet that is recommended for the Crohn’s patient is a pretty amusing read. The things I “can” eat are hilariously, notoriously not the stuff we all hear we should be eating. Some highlights:

 

  • Breads/Starches -White breads, rolls, biscuits, muffins, crackers, light rye bread without seed. Pancakes, waffles, refined cooked cereal such as cream of wheat, cream of rice, grits. Dry cereals including Corn Flakes, Rice Krispies, Special K, Puffed Rice. White or sweet potato (no skin), white rice, pasta
  • Vegetables – All allowed except those not recommended or those with skin or seeds. Cucumber, green pepper, romaine, tomatoes, onions, zucchini tomato, carrot
  • Fruits – All allowed except those not recommended or those with skin or seeds. Apricot, banana, cantaloupe, honeydew, nectarine, papaya, peach, plum, watermelon
  • Meats/Proteins – Tender, ground or well-cooked meats. Fish, poultry, eggs, tofu, creamy peanut butter
  • Fats – (A favorite category, this one) Bacon, margarine, butter, vegetable oils, salad dressing, mayonnaise, cream, plain gravies, whip cream, creamy peanut butter
  • Miscellaneous – Plain cakes, cookies, pastries, pies, sherbet, gelatin, sugar, plain hard candy, condiments, coffee, tea, carbonated beverages

Meanwhile, I CANNOT have:

  • Whole grain, stone ground cracked wheat, pumpernickel or dark rye bread. Whole grain crackers, muffins or cereal. Corn bread, corn muffins, bran cereals, granola, oatmeal, whole wheat pasta,
  • Legumes (beans and peas–kidney, navy, lima, black, chickpeas or garbanzo, pinto, soy, black-eyed split and yellow peas, lentils, peanuts, crunchy peanut butter
  • Lima beans, green peas, broccoli, parsnips, corn
  • Seeds, nuts, olives, coconut, poppyseed dressing, crunchy peanut butter
  • Horseradish

So. Those corn-tortilla chicken chilaquiles & $5 bloody Marys I was so cranky not to be getting at Henry’s last weekend turn out to be bad for me. Guess I can stop being irritated they have all but eliminated brunch, now.

The olives, beans, and nuts are the biggest blow as I eat them basically every day; though my extreme fondness for coconut is right up there in terms of bummerness. In the main though, it is actually kind of comforting to know the things I should be avoiding are things I have been eating like it was my job. Because if this level of distress is at least due in part to continually shoving exacerbating elements into the mix, it is a huge relief to think I could easily just stop doing that.

Even more, a lot of things I was imagining I’d to have to eliminate – bread, cheese, bacon – are all on the list and a pretty decent consolation prize for being relegated to the consumption of the clearly inferior creamy style peanut butter. My need to have exclusively tot-chos, and never again Juanita’s Crack Chips of Doom under my black beans and heaping cheese.

I was imagining it would be a lot worse, is what I’m saying. Now, armed with data – and access to bacon – I feel much better about the things I am confronted with. The horizon, now visible, is still a hard climb but surmountable nevertheless. 

One of the side effects of all the steroids I’m taking* is that my already tenuous grasp on sleep has become even slipperier. Though I have gone to considerable lengths to control for sound, light, and other elements of sleep hygiene it has been my custom these last few weeks to waken at about the same time the very faintest traces of light begin to show in the eastern sky.

The Angle of Approach

The Angle of Approach

This works out to be a time that a lot of people still consider the middle of the night. And I am one of them.

Try as I might, I am usually unable to coax myself back to slumber. At some point, I realized that given the turn of season, and the impossibility of running after work for the intolerable temperature that time of day, I might as well avail myself of the insistence of my body and use my wakefulness to put some miles under my feet.

I love running first thing in the morning. Everything is limned in pinkish light and cool as it will be all day. It is quiet and still on the streets and down the trails I favor. The city is stripped of pretense and beautifully bare. Places are unhaunted by a populace too occupied with their devised reality to notice or participate in the full flower of the one around them. I am elated to encounter the bronze-haired Portlandia as I have always known her; maiden earnest, singular, and strong. That is how I prefer to see her, rather than the awkwardly hewn caricature she has been wrought of late.

So, despite a list of complaints that range from a shocking need for drinking straws at every turn for my newly sensitive teeth, to aching tendons, to butterface of EPIC proportions, I am grateful to these chemicals in my blood. Not least that they allow me to rise from my bed of pain at all, but also so that I do in such very good time as to see my city in a way that reminds me why I love her after all.

 

*Not the kind one takes to get mad gains in the gym, though don’t kid yourself; ‘roid rage is a thing. I can’t speak with authority about whether my testicles have shrunk…

I eat a mess.

Don’t Forget Greasy!

While I’m not immune to the appeal of the trite and its conferred understandings, I like to think I approach most areas of my life with more nuance than clichés will usually afford. In this case, given all things in consideration, I’m willing to concede the allure.

Today, I’d felt sort of defeated by the onset of tasks I was previously able to defer for one reason or another. Whether it was the lack of a clear diagnosis for my ongoing health issues, a series of beloved out of town guests, or simply the weekend there were a slough of excuses this past week to keep me from any sort of practical application toward the undertaking of some much needed lifestyle modifications.

I thought I had come upon a clever solution to skirt the hardest part of the changes I want to make, and was quite pleased with myself on account of it. Upon further inspection and in consultation with both my doctor and a friend who is much more experienced with dietary restrictions (plusalso smarter and more observant) I realized this clever plan was both bad and self-defeating as it actually failed to eliminate several of the components I am trying to isolate from my diet for diagnostic purposes.

Confronted with this information, I started crying.

I have always had a combative relationship with food. I know most people encounter food as a joyful sensory experience to be savored. I generally encounter it with the satisfaction of a well-completed chore I’d prefer never to repeat. Like cleaning out the lint trap; I love when it all comes off in one piece, but better to never have to deal with it in the first place. It has perpetually seemed like a cruel cosmic joke humans don’t run on batteries or gasoline; something one could obtain, of which there was basically only one kind and quality that did not necessitate further planning or preparation than plugging the full thing where the empty one was and moving on with the day. This was why when the Kickstarter campaign for Soylent came about, I was super excited. This seemed like a thing for me! Something I would willingly try and possibly find perfectly suited to the amount of time and energy I would ideally like to expend thinking about, obtaining, and consuming food. 

Things have gotten much better in the past few years as I am both more rational and less cavalier about the results of ignoring the consequences of putting things in my body I should not, as well as depriving it of things it needs. Yet even with that being the case, I am still occasionally brought to a complete halt by the decisions I have to make about eating. The last time I tried an elimination diet to the ends I am aiming for this time, with my very patient and compassionate boyfriend going so far as to prepare meals for me on a regular basis, he was nonetheless baffled by all the tears I shed over what I was – or was not – eating. Without anyone holding my hand or looking over my shoulder this time, I am even more intimidated by this prospect.

Hard experience has taught me how to minimize these occurrences; planning, easy access to acceptable options, and the support of the people I am eating with are all very helpful. However, even bringing all of this to bear, there are still moments – and they are both more frequent and intense when I am trying to defy my natural tendencies in a systemic way – where I feel so overwhelmed by the task of nourishing myself that I simply refuse to do it at all. I have legitimately taken a sleeping pill so I could sleep to avoid making a decision about what to eat.

With a Crohn’s diagnosis, I have an explicit set of challenges to consider with regard to my diet going forward. While the condition itself is autoimmune and not driven by dietary factors, there are undeniable connections between diet and immune response. Moreover, since the gut is the arena-of-action, as it were, there is no real way to extract the process of eating and digesting food from the experience of having Crohn’s. All that being said, there isn’t consensus about the kind of diet that serves a person with Crohn’s best. There is ample anecdotal, testimonial, and promotional advice, but no evidence based, peer-reviewed dietary recommendations for this diagnosis. The most echoed sentiments are things like “Patients must pay special attention to their diets as concerns about nutrient absorption persist with this condition.”

Read: “since whatever food you do eat will likely shoot out of you at both ends in a spray of hot bile and sadness, make sure you take some vitamins, okay?”

Being my particular difficulty with the whole idea of confronting food that isn’t bacon, ice cream, or potatoes as a source of thwarting my attempts to consume more bacon, ice cream, and potatoes, this lack of dietary guidance feels especially ironic and defeating. 

Hearkening back to the Soylent; I thought I might have a simple solution to eliminating some of the main culprits in my diet that might be contributing to the inflammatory response in my guts. I could simply spend a week or so NOT EATING FOOD AT ALL but instead having that decision already made, and a meal just the quick shake of a plastic tumbler away. It seemed likely to remove most of the emotional angst about the process and I was fuckin’ pleased with myself for thinking of it.

Alas, it was not to be.

For you see, in my head, Soylent was dairy, gluten, and soy free. In reality, it is only one of those things, and the other stuff they put in it to make up for it not having dairy are weird and turn out to be pretty counterproductive in terms of providing any kind meaningful information about things I might need to keep away from.  

So then, crying.

Luckily, that smart friend of mine is also someone who cares enough about me to make an effort to suggest some alternatives and offer meaningful practical support like going to the grocery store with me. She may not be my boyfriend, but I still think I can count on her to look over my shoulder if I ask her to. We found another option which really IS gluten/dairy/soy free, and though I probably can’t just survive on it alone, it can be a go-to default option should I arrive in the valley of the hard stop where my options seem only to be defeat or starvation. 

So here begins my attempt to gentle my ileum into complacency again with tender words, good intentions, and apparently nothing that tastes good ever again.

Time to clean up the mess.

 

ɡrit/

noun

  1. Abrasive particles or granules, as of sand or other small, coarse impurities found in the air, food, water, etc
  2. firmness of character; indomitable spirit; pluck:
  3. a coarse-grained siliceous rock, usually with sharp, angular grains.
  4. sand or other fine grainy particles eaten by fowl to aid in digestion.

verb (used with object), gritted, gritting.

  1. to cause to grind or grate together.

verb (used without object), 

  1. to make a scratchy or slightly grating sound, as of sand being walkedon; grate.

Idioms

  1. grit one’s teeth, to show tenseness, anger, or determination by or as if by clamping or grinding the teeth together.

 

Tires On My Go Machine: AKA Happiness in Pink

Tires On My Go Machine: AKA Happiness in Pink

 

I get it in in my shoes sometimes, grit. My tendency to wear ankle socks, instead of something sensible when I hike, my headlong enthusiasm for the shore, covered in sand; all these result in carrying home tiny passengers which will take up residence in my bedroom rug.

I also demonstrate it on occasion; when faced with opposition.

I feel like my life has required an uncustomary degree of the stuff, for about the last year and a half. I am both impressed with my fortitude and tired of needing so much.

It has cast all that came before it in terms that help me realize how precious certain things I once took for granted turn out to be; freedom from intense physical distress, a reasonable presumption that laid plans can be executed given sufficient will, only chief among them.

I woke up early this morning. No particular reason, but my mind was scampering around such that I knew no more sleep was to come. Lying there in the early dark, I took stock of my physical well-being. I do this every morning now, and I am very sorry to say that for the last few months in particular, the answer is almost never “I feel well/good/fine.”

Some days, indeed it is not so much an inventory of my flesh as a catalogue of affliction. There have been respites – aided by medicine that is somewhat vile to take and odious to endure – but not since early in March has there been a string of days together where I was not in pain and some other alimentary torment. I cannot eat, sleep, work, exercise, or even lay still like a beached walrus with any degree of comfort or surety that the activity will not send my guts a-roiling in fashion like to result in moaning and exhortations.

I have resorted to medicaments, ablutions, and medical invasions I would have declared unthinkable this time last year. The various caretakers attempting to unearth the cause of all this fortitude are as yet stumped. Various incomplete and unsatisfying suggestions – along with odious and drastic treatments accordant – have been floated and ultimately found wanting; if they are not wrong entirely, they do not encompass the entirety of what seems to be going on.  

So, it happens I have become keenly aware of the exquisite value of a moment when I feel able to set my mind to a task such that I believe my body can complete it. When the sun is shining inside my skin, oh the hay I make, these days.

So then I strapped on my shoes – which are too tight because my feet are swollen from the meds that keep me on them – and went for a run. I managed 3 miles at more or less my top speed and was very pleased indeed I did. Now that I am sitting at my desk, barely able to sit up straight for the grinding inside my belly, it pleases me all the more.

 

The parameters and articles of love change over the course of a lifetime. From our earliest experiences cradled in the arms of our parents and caretakers, we develop a sense of the shape and texture of attachment. 

Some elements take on greater prominence as we grow into adults who engage in companionate, romantic, and parental love. The ways we both give and receive affection change to suit the moment and object of that love. I experience a profoundly deep and abiding love for my daughter that applies to no other person, nor ever shall. My attachment to the beautiful brilliant women of my most intimate acquaintance cannot be compared to the enduring bond I share with my brave and brazen mother.

While all of these are precious and necessary, they are unto themselves none entirely sufficient. Though I detest the trite ubiquity of the term “soul-mate” I do know it attempts to encompass and illustrate a connection most humans crave above all others.

We begin to sketch the margins of this personified role when we come awake to the longings of our body; when these are clamoring at such pitch that all other considerations are lost in the din. Some people never move beyond this manner of framing the place inside they are asking others to occupy.

Ideally, as we become more who we really are, the parameters and expectations for this relationship also take on the nuance and scope of maturity. We learn enough about ourselves to see who and how we are; who and what we need.

I’ve referred before to the fact my own experience of this process had soundtrack. This morning, while I was listening to Jackson Browne, I realized that part of my template had always been hidden in the middle of a song about blue-collar struggle.

“We’ll make love until our strength is gone. And when the morning light comes streamin’ in, we’ll get up and do it again. Amen.”

That I have been fortunate enough to experience this kind of passion is one of the great blessings of my life. That it was heretofore all but unknown makes it seem almost like a miracle.  No pretending.

[gid-ee]

adjective, giddier, giddiest.
1. Affected with vertigo; dizzy.
2. attended with or causing dizziness: a giddy climb.
3. frivolous and lighthearted; impulsive; flighty: a giddy young person.
4. feeling or showing great happiness and joy

 

I am it. 

I am so tired I cannot even properly express how tired I am.

Bit of a hangover and pressing chores prompted me to consume an amount of caffeine that was both uncustomary for me and potentially lethal for a small pony. That coupled with a remarkably compelling conversation that began around the time I usually consider bedtime. Well… not so much with the sleep, after.

I did take a nice photo of the moon this morning on my way to work…

 

 

IMG_20150406_063103

On the day that the Christian world celebrates the great sacrifice of Jesus on the cross, I am in the mind to think of suffering and surrender.

As I was lying full of needles yesterday, seeing green throbbing visions behind my eyes in the pursuit of some relief, two teachers visited me in their turn:

Gotcha ~ This fellow was there to warn me of the dangerous poison of stagnation. My recent bout of non-stop sickness has indeed left me feeling stuck. Too exhausted to make progress, indeed barely able to keep afloat. His appearance reminded me this would not always be so, and that sometimes that which dislodges us from our torpor are the results of the ancient Chinese curse “May you live in interesting times.” Powerful motive then, to shake loose the languishing tendencies I’ve been indulging.

Himself ~ Possessed of magic and charged with the care of both the hunter and his prey, this energy was also warning of a narrow focus on one aspect of existence and the dangers of forgetting both power and duty. He warns that if I cling to my perspective, I will continue to be thwarted and robbed of my energy. His presence suggests a sacrifice is required to free myself from the snare of my own expectations.

So, I’ve decided to make my own synchronicity, and forestall karmic rug-pulling by simply coming awake to my own stubborn alliance to the notion there is nothing I can do about my circumstances. Whether or not I can magically heal myself of the physical ailments by which I am beset, I can always choose either despair or confidence in the face of circumstances. I can select for the cognitive bias in favor of my ability to rebound, or the likelihood that the onslaught of difficulty will be unrelenting.

Even if I turn out to be wrong, it seems there are clear advantages in sacrificing the belief that suffering is eternal. To accepting that what cannot be avoided might be to some greater and more meaningful end. Seems like a good thing, indeed.

Filtered, falling, failing after

hours unlived yet.

Unfettered, skimming heedless, over

moments all unmet.

Trailing, tripping, weightless under

anchored violet skies.

Aloof, aloft, descending as

the passionate unwise.

image

Wildwood

[ri-myoo-ner-uh-tiv]

adjective

1. affording remuneration; profitable: remunerative work.

2. that remunerates.

“When we talk on the phone, I can’t right click on words to find out what they mean…”

On this Ash Wednesday, I’m repenting of any number of things, of both sacred consideration and mundane. It has become clear to me that I am doing much that does not best profit me; and for this, I most ardently repent.

How then, to redraw the lines of focus and application such that this might change… Ah, the perennial question, that.

 Knowing, as I do, that to expect different results all the while repeating the same patterns is madness defined, I am changing. What, how, and when I eat, along with the quantity and quality of food, sleep, and sweat are all under scrutiny and cultivation. The pursuit of educational designation to increase viability in the grown-person-full-time job market accompanies these efforts at a more personal increase in quality of life.

Also undergoing revision is the manner in which I consult myself about what is not working. I’ve started talking to myself in a variety of new ways about the things I repent. I’m not entirely sure it’s all that helpful, but at least it passes the time. Occasionally, I’ll surprise myself when I ask the gentle probing questions I would pose to a friend.

Pardon me, what was that?

 It feels like a lot to take on, this project of rebuilding myself from the ground up, but I’m out of ideas about what else I might try. The constant frustration and disappointment under the current administration does not warrant re-election on any account. I should repent of it, ever after.

 

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