Everything I Tell You is Hearsay

This week started out with such promise, then came the descent.

Oscar went rogue in a way that required a more-than-customary degree of medical intervention. 3 days into this hospital stay, I still have no definitive plan for the immediate future. It’s clear I’ll need surgery, but not precisely when, where, or to what extent the procedure will reach.

Double Dose of Dahlias

As ever, there are several considerations at play which impact my course of treatment; my recurring flares have not responded to the biologic intervention and are currently only quelled with steroids. This is problematic because apart from making me feel awful in a whole host of ways, steroids have a raft of nasty side effects [high blood pressure, bone loss, impaired endocrine function] rendering them untenable as a long term treatment. Moreover due to their tendency to cause excessive bleeding problems and delay healing substantially they are troublesome in terms of surgical intercession.

There’s a lot of uncertainty around how to proceed, and coupled with the fact that I Am Not A Patient Man, I also find it difficult to maintain my emotional equilibrium in the face of ongoing ambiguity. Plus, I might have to get a doo doo bag. For THREE MONTHS.

I feel very fortunate to have a supportive group of people taking as much care of me as I will let them. I’ve had well-wishers, and foot rubbers. Clothes-bringers and entertainment providers. Flowers and conversation have arrived at beneficial intervals, and I am moved again at the generosity of my selected family and friends.

I have also had a compassionate troop of caregivers here at Providence who have only reinforced my admiration for this health system where I am fortunate enough to work; to underscore that it is well-founded and grows by degrees. Their obvious interest in my physical well-being is complemented by an equally apparent desire to comfort me emotionally. Lastly there is a manifest willingness to patiently communicate with me about my concerns and questions that lacks any hint of exasperation or condescension that stays in O(ther) (H)ospitals (S)adly (U)pheld*

I’m trying to keep busy and positive, and to rest as much as I can. I am hoping that though this week took a dive, I’ll rebound like the little rubber bouncy ball I really am inside. A swirly purple glitter one.

*That was a stretch, but I am on morphine, so it’ll have to do.

[hez-i-tey-shuh n]

noun

1. The act of hesitating; a delay due to uncertainty of mind or fear: His hesitation cost him the championship.
2. A state of doubt or uncertainty.
3. A halting or faltering in speech.

Which Way When

I don’t generally suffer from indecision. Even if my choices aren’t always wise, I make them with gusto. It is remarkable then, when I feel unable to proceed apace with a clear notion of what my chosen course should be. It is remarkable, now.

I am feeling well. I have for days now. It has literally been more than half a year since that was true. When the character of my flares first changed from being a difficult few days each month to a near-constant circumstance of life, so did my attitude about my illness. Where once there had been an unwarranted assurance that I had rounded a corner and was surely free of a recurrence of such intense symptoms, there instead lingered a conviction that I would never again feel hale.

Post diagnosis I experienced a resurgence of optimism that having identified positively what was actually wrong it would be only a matter of taking appropriate action to make everything right.  Nearly two months later, no substantial change in my condition had begun to erode my confidence in that supposition.

About the middle of last week, I started to feel notably less unwell. By Saturday my guts had reached a degree of quiescence not experienced in months. It has persisted and is still the case. At this pass, I have no clear opinion about what might have provided me with this respite.

Notable is the addition of a new piece to my regimen at the beginning of last week based on some inductive reasoning and research about the mechanisms of my disease. It’s a minor change, easy to maintain along with other things I have been doing for a long time that while not curative, are certainly useful and help me feel better overall. Considering this, any effects should persist as long as I continue the routine.

It is also true that some of the medications I am taking for my condition take some time to reach critical mass in the system and achieve efficacy. It’s entirely possible they are finally asserting their influence and the results will also be ongoing as a result.

Yet I am also forced to acknowledge that occasionally, I just spontaneously feel better for no apparent reason. This is of course the most depressing possibility as I have no control over, ability to predict, or capacity to produce this result.

That realization has left me with a bit of an emotional hangover and an appreciable residue over any part of my life where might linger uncertainty. Instances in which I might not have all the information suddenly loom and cause disquiet. Circumstances that might otherwise barely capture my notice take on huge and ominous import.

It is as though the all the physical distress of the long lead up to now grew to occupy space suddenly come vacant. To fill the yawning void, in rush uncertainty, worry, and their fickle sister doubt. I think it is now my task to usher them out and introduce patience, faith, and assurance that whatever may pass I am capable of facing it bravely; even if I require a measured pause, before.

I am delighted to report I am finally starting to taper off the steroids I’ve been taking since April. While they made life bearable and allowed me to remain largely functional, their laundry list of side effects have been nasty to deal with. Here I cite:

• Sleeplessness: Waking up at 4 a.m. is obscene and I was doing it no matter when I fell asleep which varied between 8-11 p.m. depending on how readily my body cooperated with my efforts to go to bed during what still appeared to be daytime.
• Muscle tension: Much like Goldmember, everything was very toight! This lead to some injuries despite my efforts to stretch and left me achy more or less all the time.
• Hearing and Vision Changes: This tripped me out, but both my eyes and ears underwent a certain degradation in acuity. Ears felt constantly full and like they needed to pop. My eyes were much less responsive to attempts to focus and freaked me out more than once when I looked up from a book I was reading and literally could not see anything in the distance as more than a goopy blur. I am assured this is temporary. Just what I one-eyed girl needs is a downgrade in visual clarity.
• Increased Blood Pressure & Glucose: You stay on this stuff long enough you’ll seriously degrade your vascular health and get the dia-bee-tis.
• Dental Sensitivity: Leeches the calcium right out of your bones. Including teeth. I’m drinking everything through a straw these days. Osteoporosis is another common problem for folks who require long-term treatment with steroids.
• Weight Gain: My personal favorite and loudly lamented to everyone’s extreme annoyance. Thirty pounds people. Thirty.

Living in this body has felt a bit like driving around someone else’s decrepit, temperamental, clunky Asphalt-Barge when I am used to piloting a trim, responsive, and sleek ZoomGo-er.

Of course, now coming off of the meds has it’s own set of drawbacks.

After weeks of not being able to sleep properly, I am now constantly exhausted. This of course makes all the sense in the world, but since I do not have the leisure of simply snoozing the next month away, it’s been a bit of a drag. Even with the influx of enough caffeine to cripple a small buffalo, I am still logy more or less all the time. Working, running, chores, and anything other than lying down and sweating profusely seems beyond my current scope of practice. 

Also, now that the muscle tension has begun to subside, my joints ache like it is what they were made for. Headaches, as the vascular constriction I have been suffering for weeks starts to relent. Mood changes are also very much par for the course, and I have been more than a little weepy of late. All of this, coupled with the news that NSAID’s are basically the devil incarnate for anyone with Crohn’s and I am an achy, tired, weepy piece of work.

My second infusion of Remicade is Monday. They tell me with that treatment, my symptoms (GI, not so much the withdrawal) should start to substantially diminish. I’m hoping that since I’ve already noticed them subsiding to a certain extent, that this dose will drive Oscar* into hiding for the long term. Once he’s vanquished I hope to reclaim my body once more. During that process, I ask for your patience if I am weepy, your forbearance if I am slothful, and a blankie if I nod off…

“You Talkin’ To Me?”

*Oscar is what I have named my digestive complaint. The gurgling noises that emanate from my guts have a distinct personality; much like the can-dweller it has an acerbic sense of humor, irritating timing, and lives somewhere pretty gross.   

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.