wherein the anti-inflammatory diet bites me back

On September 27th, I woke up with stomach cramps.  They weren't strong enough to prevent me from biking to work and I expected that they would wear off by mid-morning as they and nausea typically do.  On this occasion, however, the opposite occurred and the cramps not only got stronger but began cycling through the wave, with which all Crohns are familiar.

For those unfamiliar, the wave is a cycle of pain in which the sensation begins modestly and proceeds to grow like a swell before hitting a peak around which it dawdles for a time and then swells back down.  Each cycle can last anywhere from 1-10 min depending on how violent is your episode.

The day before, I was very proud to have gone my first complete day without eating any "illegal" foods on my self-imposed anti-inflammatory diet.  Like a veteran, I weened myself away from refined sugars and carbs very slowly:

Breakfast:  banana and blueberry smoothie (with coconut oil) 

Lunch: leftover steamed veggies and roasted fennel

Supper: coconut flour biscuit with lox and raisin cashew carrot salad (with lemon juice)

Apart from the food -- none of which was new to my system nor should have done any harm -- the day was not without a very significant amount of stress, which no doubt contributed to the episode the following day.

Since I had a masters and undergraduate student arriving on the 27th to be under my supervision, and the 4th day of 12 straight days of behavior to conquer, there was to be no standing down.  By 10am, however, the waves had picked up their ardor and I found myself clutching my stomach while giving a microscope tutorial and a brief anatomy lesson.

At 1130am it was time to traipse from the medical to the main campus (~10 min walk) to do behavior.  By this time, the waves were such that when I walked I could feel every reverberation from the placement of my feet -- a shock spiraled up my spine each time my heel hit, the ball of my foot, my big toe, the rest of my toes, and as weight shifted back to the ball of my foot, to the side, and as my heel lifted and weight transfered to my ball and toes again.  It took me almost 20 min to make that trip, slowing down in attempt to increased the fluidity of my steps in vain effort to avoid the reverberations.

Just 2 hrs, I told myself, and H.K. will pick me up and bring me home to drug myself into oblivion and hopefully avoid a visit to the ER.  To briefly elaborate, the wave is almost never a sign of a rupture or abscess.  Four times in my Crohn history a day like this has been as debilitating: the first, when I was maybe 14 and no visit to the ER was made, and I was fine; the second, third and fourth when I was in my early 20s and made visits to the ER during which I was given morphine and a CT scan after which time I was sent home with a bottle of percocet and told that nothing was wrong.  The all-too-familiar gab of a physician who doesn't give a shit.  As a scientist, I can tell you via very basic logic, that if the body allows nociception to deliver enough consistent pain to knock a person off their feet, there is something wrong.  There just is.

I have no idea how I survived those 2 hrs of behavior.  Honestly.  I'm fairly certain that I took the opportunity to black the fuck out during my 20 min break.  As to my subjects?  I have tremendous and impressive control over the projection of my chakras.  If they knew anything was amiss, I would be flabbergasted.

In any case, I did not go to the useless and unhelpful ER.  I did, however, take 20 mg oxycodone over the course of the evening, and a hit from my vaporizer each time I awoke in pain throughout the wee hours (1, 3, 4 and 5am).  Yes, my friends, it was in fact that bad.  On this day, I was only able to stomach a few spoonfuls of broth and 2 saltines, and that only to give the oxy something to mingle with.

On Sept 28th, I did not move from my bed until 11am, at which time I needed to return to the lab to do more behavior.  This was a most assured FML event.  H.K. was wonderful enough to put off his own work for a few hours to stuff a Boost down my throat, drive me to my destination and run an errand for me while I did my thang.

Upon returning home, I again relieved the still miserable but notably less excruciating pain with more drugs and slept until the evening.  Not a BM to be found through this whole saga, mind you, nor was this gas related.  So the remaining culprits are stress and food intolerance.

Today, the 29th, I am sore, weak, bloated and nauseous, but the wave is gone.  I performed my behavioral tests today in significantly less agony.  And I am slowly adding back solid -- although not remotely anti-inflammatory -- foods back into my system.  Saltines?  Noodle soup?  Jello?  This is a documented instance in which anti-inflammatory food brought me to my knees and carbs and sugar revived me.

tremendous pain and throughput reunited

Last night, I was paid a visit from my dear old friend, Tremendous Pain.  TP -- stoked to see me -- insisted on re-hashing everything we had ever done together (ALL the old times).

As luck would have it, my oxy had not expired.   Neither had the Promethazine I was out like a light by 8pm.  Until 3am, when the roaring from my tummeh all but woke H.K. from his own deep slumber.  The next two hours were spent crumpled intermittently on the floor of the bathroom.  TP had revitalized his old buddy Throughput, and together they had a splendid time bringing me to my knees.  Fortunately, as soon as the battle quelled I had an hour left to rehabilitate in bed.

Somewhat less fortunately, I had a 3 hr class to teach this morning.  Yeah.   TP was ready to call it a night, but Throughput was still eager to party.  And Promethazine?  That bitch just does not metabolize.  So this morning, I lectured and taught a 3 hr lab to a group of unsuspecting undergrads as a Throughput Zombie.

What is the point to all this complaining, you ask?  To prove that I am a bad ass mother, and that TP, Throughput and Promethazine be damned, my students will learn neuropharmacology today.  In all honesty, I have no idea how I made it through without a vasovagal event.  The only thing I want in the entire world right now is to sleep it off.  But Raga has a presentation tomorrow morning...

the traveling Crohn

The adventure, three days in, has already been packed with thrills, chills and hospital billz [yo].  On a mild Sunday evening in the Bay Area, I find myself with a moment to reflect on the first phase of this great adventure.

The back story is very important here.  I have never lived more than 1 hour away from my childhood home, in which 20 nigh consecutive years of my life were spent.  When I went to college, I was an hour south.  When I went to work, I was half an hour north.  Although I have traveled some, I have never done the "big move"; and the "big move" includes a three-bdrm apartment of stuff that I didn't have before getting married last year.  With that in mind, let us begin.

I had planned for Wednesday the 27th to by my final full day at work, giving me a little buffer room to wrap up final minutiae.  Come Monday evening, and after accepting that the newly deposited moving POD is probably too small for what we need, I receive word that someone very dear has been addicted to narcotics for the past three years and is now ready to seek support in deciding the next steps toward recovery.  As if I weren't stressed enough -- if you ask H.K., "freaking out" would be his word choice -- this was pretty much icing on the cake.  Or fondant, if we're going for the full-blanket "heavy and surprisingly not good" analogy, and I am.

Tuesday morning during a short tea with Boss Man, I announce that I will be finishing up everything today and that I will be leaving early to be able to devote some time to Loved NA before I disappear.  Emotions abound during good byes and I flee the lab and go directly to Loved NA's abode.  It is pertinent, here, that I have not eaten much/well in several days because nausea and evening Crohn's attacks have become frequent and increasingly more painful.  This made the evening spent with Loved NA et al much less fun than it could have been.  However, it was a productive evening and I was sure that I could leave knowing that Loved NA was in good hands and of good-ish mind.

H.K. has already spent Tuesday packing up his small business into the POD, and Wednesday morning brings my involvement.  We get the thing a bit less than halfway packed before retiring.  I spend the night in and out of the Thunder Dome (ya like that?).  Thursday morning is blur of half-consciousness and sore limbs (does it come as a surprise to anyone that I'm totally out of shape but still lifting boxes and furniture twice my size? no.).  Loved NA is over helping a bit while kept a close but friendly eye on.  My mother has come as well with a repeated strain injury in her wrist and still clambering to help so I am delegating her to very small items.  Bless their hearts, delegating is the last thing on this earth that I want to be doing.

Wednesday evening, happiness arrives in the form of Minister Man (*totally unaffiliated best bud who kindly got ordained solely to hitch H.K. and I).  At this point, my diet of saltines, broth and beans has rendered me Throughputless, and I indulge in salmon and rice.  Then, I die.  The next morning, H.K. and Minister Man take over the heavy lifting as my body is near useless.  Mid-morning, I get a call from Loved NA, whose "watcher" has been called away and who is in need of a safe place.  I drop what I'm doing (which in honesty is not much), and leave the boys with the packing burden for the next hour, the poor things**.

Eventually on Thursday evening, our lives sans the trash and recycling bins and a dragon flower plant are packed, the apartment is in better condition than we received it despite the gaping cement hole and Frankinsteinian counter in our kitchen.  Without the extensive help of Minister Man, my mother, my sister and Loved NA... there is no way in the world that this could have been accomplished in two days.  No friggin way.  H.K. and I spend the night at my parents, where I [again] indulge in foods which encourage peristalsis, and [again] spend the evening with the Thunder Pot in more excruciating pain than I have been in over two years.

Had we not planned on leaving at 330am the next morning, I would have woken H.K. and fled to the ER for morphine salvation.  Instead, and without any form of painkiller, I endured.  Because I am an idiot.  And then got up at 330am.  Because I am an idiot.  You betcha.

H.K. was kind enough to do the majority of the driving to the Bay Area (a 12 hr trek).  We arrived with ample time to greet and have dinner with his family, after which we made for the ER where I was plugged into saline and chugged a gallon of CT scan contrast (in apple juice, which I have never had but was surprisingly effective).  Four hours later, I had peed I'm pretty sure at least 20 times, was given a "negative" CT scan and prescribed oxycodone and a very acute steroid dose.  Come again?  Acute steroids and no inflammation?  Sorry bud, not going there.  The oxycodone will do me just fine until I get down to New Home Base and find a new Dr. GI with whom to discuss an actual treatment plan.

The weekend has been lovely so far, with morning swims in the heated outdoor pool directly on the Bay, breezy walks on the Bayside promenade, coffee to encourage the Throughput and relaxing games, all less than 10 min from the nearest Thunder Dome.  I'm starting to return to functional status.  H.K. is loving this mini-vacay.  Neither one of us are yet dreading next weekend when we drive down to L.A. to meet our moving POD.

** lest I have over-sold my impotency, please know that in reality I did a ton of work for this move.  just... the heavy lifting paled in comparison to H.K. and Minister Man.

in which Remicade is a Mercedes Convertible, and I decipher Russo-English science

It has finally happened.  I -- organizational and scheduling fanatic -- have missed an infusion.  By two weeks.  How did this happen?, you may ask.  I'll tell you.

I rescheduled my infusion to be two days after I met with Dr. GI, so that if we decided to scrap the Remicade and move on to "sexier cars" (his words), I would have drug-free buffer room to start immediately.  In fact, what happened was that when the nurse rescheduled me, she in fact neglected to reschedule me.  So my appointment came and went, as did my alleged infusion date, and I called the clinic to see why they had no appointment for me.  "You were a no-show on the 14th," is what I was told.  "But I rescheduled for the 27th of May, I just did not receive a reminder from Epic as I typically do and so I have not yet been infused -- I must not have been rescheduled" I retorted.  "Oops," the nurse replied, not at all withdrawing the reprimand from her previous remark, mind you.

Not all that exciting a story, really, but I wanted to get your hopes up.  The recent increase in Throughput over the past two weeks may be in part because I am overdue for my drugging.  Dr. GI was firm in his conclusion that it is not because I've increased my veggie intake.  My miniature experiment wherein I ate only crackers/rice/broth for a day and produced a 50% decrease in Throughput the following 24 hr period was noted.  The 50% reduction did not convince him.  And since I've been buffering all my veggies with fluffy carby foods over the last week with no Throughput let-up, I am beginning to side with him.  It is possible that my notably increased nausea and dependence on Percocet to survive the evenings are weighing in.

So... I'm taking my Remi from the 8- to the 6-week interval -- perhaps the 4 -- and if in the coming two months I do not see improvement, I will concede to move on to "sexier cars".  For now, I will deliberate between Humira (the Benz), Imuran (the Lexus) or LDN (the Prius).  I refrained from challenging Dr. GI as to whether Imuran was a Lexus or, in fact, an Astin Martin.

Meanwhile, in my small corner of the world of science, I am reviewing my first manuscript as a Peer.  It has been translated from Russian, and while the findings are very exciting, the syntax, run-on sentences and hugely neglected Methodology section have been problematic for my novice brain.  I spent 6 hours on Sunday trying to get through this thing (during this same period, my boss pummeled through a 140 pg dissertation... pwned).

Something I am gleaning from my meager experience in reviewing and being reviewed is that reviewers tend to hope that you cite them in your work.  Often, when we (my lab) produce(s) manuscripts, we request reviewers whose work we cite in the present work.  The Russian paper from this weekend didn't cite any of our work anywhere, which was not really offensive so much as remarkable because their findings were so intertwined with ours, and supported by some of our previous publications.  They did not defend discrepancies between their data and that of other studies which they did cite (which was a weird door to leave open), nor did they speculate on the correlations within their own data set (also odd).  It is a very different experience to read a submitted manuscript than a published article.  I think I like it...

What it is to be Addicted

I will always purport that I do not have an addictive personality.  My Crohn's, however, has a different grasp of physiological priority.

We all know the taste of sweet freedom that comes with the alleviation of a flare.  The opportunity to stuff ourselves with forbidden sweets, meats, fiber and alcohol is oddly new every time it occurs.  Be it a week of starvation or six months, the gustatory ambition that surfaces at the first sight of a pain-free day is unstoppable.  This is celebration (and, perhaps, weakness), but not addiction.

No, the phenomenon of which I speak is of a chronic and somewhat masochistic nature: a beast that hibernates during the most turbulent parts of Flare Season and soon overwhelms the first glimpses of attenuated agony that might suggest the ingestion of food without consequence.

I speak, of course, of The Compulsion.  Normally, The Compulsion takes the form of the homunculus in my brain who demands that I constantly have something constructive for it to do.  Lately, after eight months of excruciatingly limited diet, The Compulsion is more concerned with food.

Primarily when we have guests staying for weeks at a time in our home (which is more often than you would suppose), The Compulsion wants to be a good host and assumes the responsibility of eating and drinking those forbidden sweets, meats fibers and alcohols that our friends appreciate in our cooking.

And so, Dear Friends, the last week has once again been especially filled with pleasant dining and indulgence in my favorite wines (in the tragic way that only an oenophile can treasure good wine after eight months prohibition).  This, while keeping The Compulsion happy and contented, has been accompanied by nightly sits with the hot pad; teaearlgreyhot; the toilet and, occasionally, our loving companion, Percocet.

This is the plight of an addict -- to lack the composure to say no to food and drink in social scenarios, even when the pain is immediate.  Seriously; if you've ever tried to quell alcoholism or quit chain smoking, this is the mental state I am in right now.

Madness, Glorious Madness

I hesitated to report until I was sure the following occurence was not a fluke.  Still not 100% convinced, I am willing to at least admit that I am utterly flabbergasted.

Beginning on Thursday April 1st, 2010, there was a noteable absence of  stomach pain/nausea/dizziness/hot flash that lasted the entire day.  An April Fool's joke from my insides, I thought, a silly trick my own mind is playing on me by bestowing a fleeting power to ignore all discomfort.

Lo' and behold, I awoke Friday April 2nd with yet another suspicious lack of agony.  What is this chicanery, I thought.  Since when do April Fool's tricks legally last beyond the first 24 hours of the month?  Naturally, I tried to out-do this mind-gut-wizard triumvirate by stuffing myself with a full serving of rice noodles.  Surely, this will welcome back the pattern of food=pain=nofood=pain that has characterized the last 2 weeks.  Alas, I returned home with a psychotic energy and not enough time to utilize it.  I ran, I cleaned, I made business phone calls, I added a few unpromising pages to Raganovel 20??... no percocet or hot bladder required.  Tea, however, is always required.

When Saturday came and I was approaching 3 full days without the familiar stomach pain/nausea/dizziness/hot flash to which I have become accustomed, I decided a further assault was in order.  Sushi.  That's right.  Raw tuna, crab, yellow tail and avocado.  And I waited impatiently for an army of nociceptors to wreak havoc.  Half an hour later, thirty measly minutes of stomach bloating.

Sunday I was beginning to think this was something I may have to get used to, so I pushed it to the max: pasta with a few peppers/zucchini/chicken/garlic and a bit of oil in the sauce, some organic gummy candies and a diet ginger ale, and a hardboiled egg wish horseradish (yeah, serious business).  Nothing.  Not a god damn peep.  Total comfort, almost total sleep aside from waking up every three hours for no apparent reason, total abandonment of the hot water bladder (for whose neglect I feel considerable guilt).

Today, Monday April 5th, 2010, is the last of four hellfire Mondays of this experiment at work, and I not only ran before work for the first time in 1.5 weeks, but am on a productive and enthusiastic roll.  My doctor may have been right about my experiencing a delayed withdrawal from Prednisone.  We shall see in the coming days.  Remicade VII is up to bat this weekend.

Cheers, Crohn's, you have me convinced that I am at the very least experiencing some kind of prolonged bodily displacement.  And Tummeh... job well done.

Can you feel it?

The stomach situation has escalated.  I'm in a routine now where I wake up in the morning feeling fine, and avoid eating until 10am or so when I absolutely have to because at 10am I take stomach-annihilating meds.  After I eat -- no matter what I eat or in what amount -- I am fine until an hour or so later, by which time I have developed a crippling bloating nauseating pain in my stomach (literally, it makes me have to transition into work where I'm sitting down and not using my brain).

The bloating nauseating pain in my stomach slowly amplifies until 7pm (two hours past when I usually have to eat in order to avoid intestinal pain) at which point I determine whether it will be more beneficial to pass on dinner and take my antibiotics on an empty stomach or to eat a bit.  Either one intensifies the situation more -- there's no way around it.

I started off taking ginger to help it settle which did absolutely nothing for three days, so I have stopped.

For the last four days I've been a complete baby and come home from work to hot tea, a percocet, my boiling hot water bladder and the couch.  H.K. is worried that I'm going to give myself skin cancer from eleven years of hot pad/water bladder burns.  The only way I can lessen the pain in any significant way is to burn it away.  One percocet does very little to relieve pain and taking two knocks me out cold until 11am the next day.  Which I absolutely not afford right now since my coworkers are all out of town or otherwise not in for the next few days and not only to I have to make sure I hit all my time-sensitive deadlines, I have to take care of one or two little things of theirs... so I kind of have to be at work.  Screw percocet.

This has been the pattern for six days.

The other pattern has been an odd heavy nausea/vertigo/hot flash situation whenever I exert energy:  running, crying, losing a little blood.  Apparently my body goes into minor shock at every minuscule effort?

Dr GI says all of this can be caused by prednisone (which I haven't taken for three weeks).  He is contemplating a more comprehensive working theory...

On the bright side, I think we figured out a way to plan this wedding that makes everyone at least happy enough to pretend they're not pissed off.

The Biggest Disappointment, and the Greatest Happiness

At this moment, H.K. is submitting his film to his first festival, and I am sitting on the bathroom floor pumped full of oxycodone, in tears (due to shame, not pain) and attempting to burn my pain away with my hot water bottle. 

I am missing his film debut because of this wretched stomach spasming that can be avoided neither by eating nor by starving.  This is something I have been looking forward to for two months (since he started this projects).  All of his cast, crew, my family and some of our close friends will be there to support him.  I will not.  

This damn burning, aggravating, undiagnosable "non-UTI" which I posted about the last time it occurred is back full throttle on top of this strange stomach situation.  It is unbearable, and makes the stomach pain twice as irritating... so you can imagine that the disappointment and shame of not being able to attend H.K.'s debut makes everything much worse. 

I will not be able to sit in the audience when he accepts his first place award (which I have no doubt he will) and say, "that strapping young steed who just blew all your minds with his newly discovered talent is the man I'm going to marry; you can't have him."  Neither will I be able to punch out all the groupies who flock to him after the showing.  But most importantly, I will not be there to support him in this technically small but momentous event.  What if Daniel Baldwin is there and offers him the sponsorship of a feature length on the spot??

My mother, sister and I found my wedding dress today.  I -- a ragamuffin who does not wear nor own dresses -- apparently look good in wedding dresses in general.  I was very pleasantly surprised.  I was also surprised to choose a more formal long gown over a less formal tea length (similar to the confounded befuddlement that accompanied my choice of engagement and wedding ring).

I am so overwhelmingly excited to marry this man.  And so devastatingly upset to not be with him tonight.  Damn Crohn's disease today, and damn urologists who refuse to see me because my variation of dying isn't serious enough to them, and thank goodness I have an appointment tomorrow with a trusted gynecologist who will probably do more for me than the urologist would anyway.

Of Percocet and Superglue

Bless me, Intestines, for I have sinned (apparently); it has been two weeks since my last prednisone.

Because it took five months on prednisone for me to notice any non-painkiller-mediated improvement, I had given up on this (and last) year's flare being a fresh area.  This shaky conclusion left me befuddled, because the pain had been focused in a new area (a.k.a., not the ileum), and so I suspected that prednisone would clean up the new dirt, as it were.  Low and behold, I am but two weeks without prednisone and am again unable to eat most anything in my [generally] modest diet without experiencing heavy bloating, nausea and pain.  Apparently prednisone was doing some good after all, it just took five months to show it?

What is interesting about this new baseline is that it is central to my stomach -- yeah, very much not the ileum or any part of the intestine -- but that it resembles the pressure and pain I felt in my intestine several months ago.  The pain, although not nearly so crippling, now accompanies the feeling of imminent explosion in my stomach pouch.  It is an interesting ordeal trying to figure out what has happened over the last two weeks to encourage this development.

1) some yogurt-covered raisins
2) tomatillo sauce
3) two slices of marionberry pie (no seeds)

So I've started from scratch again over the last 3 days (broth, crackers, egg) to see if I can regain calm seas.  It's not worked yet.

The non-food culprit exists, however.  Affectionately named Allergy Magic, and pharmaceutically marketed as Allegra, the tummeh proper is very sensitive to this drug.  It must be taken on a full stomach, but NOT with food.  Half an hour after food is the recommendation, and a non-sugary meal, at that.  A full 12 oz of water is an additional must.  These precautions may not be enough to keep my stomach from reacting poorly.  It is a possibility.

In spite of it all, I have taken an oxycodone this evening, hell-bent on indulging in chicken, zucchini and some light pasta tonight...  before crusading for wedding dresses tomorrow.  Am I good, or what?

And most importantly, I sliced the tip of my index finger this afternoon whilst cutting bread.  With a giant serrated bread knife.  I'll find out tomorrow how deep it is, but based on how quickly the pain was quelled (10-15min), I concluded that I did not scathe the bone.  I did, however, cut plain through half of my fingernail, which is quite gnarly and could be bent away.

Although I didn't figure myself too frightened, and although H.K. and I iced/ethanoled/pressed/gauzed the poor piggy fairly efficiently, I noticed that I had a small wave of shock.  My body heated all but instantaneously to the point of black-spotted dizziness and I had to sit down -- the shock itself was the only thing that actually shocked me.

My favorite part was supergluing the gushing gap shut.  Oh yes.  This is a frequent medical practice; did you know?  I didn't.  So instead of going to the ER, we glued my finger tip back on.  It was awesome.  H.K. is a fine doctor.

A Crohn's Affair

me: hey, could you email me something...?

H.B.: you want an email that says, 'something'?

me: there is a document on my desktop

...

H.B.: k, sent

me: you are my prince

H.B.: lame, i want to be a knight

Announcing the promotion of H.B. to H.F., via engagement to yours truly.  However, as requested, instead of henceforth being referred to as "Heroic Fiance", "Heroic Knight" will be applied; to be replaced by "Heroic Husband" in July.

Yes, we are expiditing.  No, I am not pregnant.

Crohn's-Relevant Considerations that I thought were amusing:

1)  Location:  We chose to have the ceremony on HK's family's gorgeous property in San Rafael (ahem... next door to Lucas Ranch...).  This decision was made primarily based on sentiment (gross) and comfort.  However, it was also chosen because I am anticipating a day of moderate to high restroom visit frequency, and would like to be able to slip away nearly-unnoticed, which may actually be possible there.  Other thoughts: how funny would it be if I were stuck in the restroom for 30 minutes and everyone began to assume I had fled?...

2)  Cake:  Hi.  No dairy, please.  Seeing as wedding cakes in particular are purebreds of butter cream and sugar (leavened solely by magic), my options here are quite limited.  Options:  a) indulge, b) scrape off my icing in front of EVERYONE watching, c) pay $475K for a dairy-free cake and risk 40 refusals to eat more than a forkfull of the thing.

3)  Food:  To appease all, the menu will have to include normal, vegetarian, vegan, cooked, raw, oily, and oil-free options.  Whoever I convince to prepare these dishes for me is going to hate me.

4) Wine:  Make sure I get all the moping and crying over not being able to over-indulge in life's-greatest-gift-to-man out ahead of time so my Moon Face is not exacerbated by swollen glands.

5) Drugs:  Make sure that I spend the days before the ceremony eating mildly so that I do not have to toke up on painkillers and nausea medication and fall asleep during the big moment.

6) Hair:  What in the world to do with my hair (which I would have otherwise worn down) to hide the fact that I only have half of it left on my head.

7) Those who have done this before me:  Am I missing anything?

Summary

I've always appreciated the opportunity to be a big fish in a small pond.  My undergraduate studies were formative because in a liberal arts environment I was able to build what I wanted to exist if it was not already at my disposal.  I am able to flourish in my work environment because I work in a small lab, and am proficient in almost all of the many techniques we employ -- an opportunity devoid in most research technician experiences in major labs.  Why in the world I thought I wanted to become a water strider in a small pond, I... well, I was naively drunk on ambition and high on painkillers at the time.  It happens.

It has taken me longer than I expected to come to terms with what I am finally admitting was, in fact, not a major failure or condemnation of my prospective life.  Explaining this requires an extrapolation of the last two years.

In 2008 when I graduated, my plan was to stay in Portland working in my newly salaried lab position, get a grant funded, get a paper published, and apply to medical school.  However, having met H.B. and had a heart to heart with my boss, I relented to the reality that medical school would probably be my physiological undoing.  That was June of 2009.

So mid-June, I put away my MCAT books and invested in the GRE (which is much cheaper, much simpler, and much much less inspiring).  That was a Friday.

On Saturday, I was writhing on the bathroom floor unnerving H.B. with labor pains such as I hadn't felt in ten years.

In August, I finally met with Dr GI who was content to see me after staving me off with oxycodone for two weeks.  Glossing over the finest details, I took the GRE at the end of the month on painkillers, nausea medication and having eaten only fake broth, baby food and crackers for several weeks.  Not one of my best performances.

Nonetheless, I applied in November to four of the most prestigious PhD programs in Neuroscience that I could find.  In my defense, it's not my fault that the only places who offered my ideal program-PI combo were the hardest to get into in the country.  It is my fault, however, that I was so fool-heartedly naive as to think I might be competitive in those programs (as a non-resident), and to discard any opportunity that wasn't up to par with my quixotic dreams.

Since November, the condition of my guts has improved astronomically.  That being said, I am not yet what I would call "physically well".    But it's getting there.

And here, my dear readers, is the kicker: I'm not crushed by this failure.

I am nothing if not obdurately and nonsensically ambitious.  Making the drastic changes of heart and career direction that I did in June should have been, of themselves, enough to convince me to take another year to get it all put together the right way.  A healthy me might have been sufficiently adjusted and prepared applications by November.  Having been in pain, starved and on drugs, however, I am willing to make the concession that I was hasty and would have fared better from having given myself a year to stabilize.  That wise thought did not occur to me at the time.  The things a deadline can do to one's soul...

I now have another year to make myself invaluable, to heal and to get it right the next time around.  And I can survive this set-back.  Things may actually get accomplished this year, too; I have three papers and two conferences in the works, and will be moving toward disability accommodation so as to avoid another tragic event as that which usurped my intentions last August.

Needless to say, I'll be looking into smaller ponds next year.

Currently, I have had six Remicade infusions, have dropped 6MP, and have finally tapered successfully (or so it seems) off of Prednisone after six turbulent months.  I am eating 4-6 small snack/meals a day and avoiding pain 70% of the time by having eliminated quite a few foods entirely.  Nausea is usually quelled by the late afternoons, and fatigue has been mild and tolerable.

Another year to spend in my beloved lab, in my beloved Portland, near my beloved family and with my beloved H.B..  Things could be worse.

sick day 2; sit rep

I should, perhaps, not make documentations during the wee hours (no pun this time) when I am particularly irritated by the fact that I am not sleeping.

I jinxed myself, it appears, by bragging that I slept an almost healthy cycle last night.  The Gods of Pharmacy are having their sweet revenge (they are easily embittered).  Let it be known that throbbing is not always classified as "pain", and is therefore not always defeated by painkiller, a lesson that I am learning through practice at 2:30am.  Let it also be known that it is, in fact, possible for throbbing irritation to override the sedative effects of oxycodone -- a particularly impressive demonstration.  I am now semi-convinced that my negative urinalysis may not have been a screw-up, and I may be taking extra antibiotics for no reason.

Second unexpected report: Boost sent me to dust off the promethazine bottle after several weeks of successfully fended-off nausea.  Perhaps sugar was the culprit.  I also learned that although I typically do not react poorly to cooked carrots, dried carrot chips do initiate an allergic reaction.  Toast has once again won-out in allure, today.  And an egg.  

On the other hand, I'm plenty awake enough to do some reading without falling asleep five pages in (as has been my habit the last several days/weeks).

On that same, auspicious hand, I finished a draft of the textbook chapter today, which reminds me: my boss and coworkers are incredible, very few are so lucky.  I am plenty happy with it; the weekend will be for fine tuning and healing only.

Finally, the very same proverbial hand seems to have facilitated -- after painfully ridiculous and prolonged chasing down of various graduate admissions personnel --  the confirmed reception of all of my letters of recommendation!  You'd think a graduate school that promotes online applications but also accepts/requires portions in hard copy would have an efficient system of making sure the combined records eventually met in the same system.  Apparently, this is not a safe assumption.  Those universities which offer stubborn old-school professors the option of snail-mailing letters of recommendation do not necessarily have a system of marking that record in the online system (which, for the last few weeks, has listed my application as "unfinished" because admissions had not entered that particular letter of recommendation into the system).  All four of my schools are guilty of this, by the way.

why driving during a Crohn's attack is not a great idea

As soon as I stepped onto the bus this evening after an awesome sushi date with my ex-post-doc, last night's record mysteriously began to play itself again.  Only this time, it was dark and rainy and I was twenty minutes further from home.  Can you feel the suspense building already?
Well I must disappoint you, here; the pain was not quite so spine-stiffening as last night.  In fact, I read a full eight pages of my book, and absorbed roughly three (compare to last night's 2:0).  Once again, I requested H.B.'s assistance in preparing my hot pad, and as I stepped into my car I realized that I was about to embark on a unique four-minute journey.  It is a bad idea to drive during a Crohn's attack because when applying the brakes and/or turning the vehicle, you make more use your lower stomach muscles than you probably realize.  I've never induced a muscle cramp in my stomach from driving before, but one of the turns I made tonight mid-pain-wave was made tight enough by the rainy road.  I subsequently sat up straight to try to relieve it and, in so doing, released the spasms of my left large intestine and lower middle small bowel.  So I hunched over again.  This back-and-forth continued until I got home, had to park at the other end of the complex (on the solitary night that I would have preferred not to be caught in the rain), and had to shuffle-sprint (this must have been utterly hilarious to behold) an eighth-mile to my dominion.

Do not drive during a Crohn's attack.  It will give you muscle spasms.

What I forgot to mention yesterday was the resurfacing of heartburn.  It emerged a month ago when I began reintroducing solid/mush foods.  That was completely understandable as my esophageal sphincter was likely reacting to the transition from pure liquid to slightly solid -- an increase in pressure, provoking reflux.  This time, however, there is no new food.  I ate cauliflower soup, egg, chicken and rice yesterday.  I ate a bagel and a bit of sushi today.  There is no excuse for heartburn, yet here it is.  It is noteworthy that in eleven years of Crohn's disease I have only ever had heartburn when reintroducing solid food following a liquid diet stint.  Another new (or at least newly placed) symptom!  Hoorah!

Once again, I am thoroughly enjoying watching Mythbusters and tea whilst high (on oxycodone).

on waiting it out

No sooner had I convinced my poor parents that waiting it out was the best plan of action than I had another major attack.

I have had a somewhat intense past two days at work, but I don't presume that to be the cause.  I am further baffled by which of my meals during the past 48 hours could have caused such dramatic upset.  Leftover cauliflower soup, tuna/crab sushi, egg, toast.  These are all foods I've eaten before with no direct consequence; they have all only been associated with pain via the Weekly Throughput, save for cauliflower.  I have, however, had three small servings of pureed cauliflower soup since Sunday, so perhaps it was the cauliflower...

This was a fairly sudden attack, as they go.  I was fine the whole day until a few minutes before I stepped onto the bus home.  I then spent the next 45 minutes starring stiffly into the pages of Copernicus' Secret trying not to appear cracked out or release any agonizing noises (from either end).  I think I turned two pages for the sake of appearance, and read none.  This was an attack similar to the ER episodes of this flare; waves of climaxing and waning pain that lasted less than a minute each.  The difference with this episode was that the pain was not only in my lower middle abdomen (where my small intestine is clean as per Dr. S and obstructed as per Dr. P), but also in my left large intestine (the new locale that entered the scene just before my SBFT, and about which neither doctor said a thing), and more subtly all throughout my bloated abdomen. 

So I did it: I road the bus all the way home in peak rush hour traffic with an attack.  I did, however, call H.B. upon reaching the park-and-ride and ask him to ready my heating pad so that I could immediately apply my favorite antidote upon walking through the door.  He also served me a bit of prune juice with some oxycodone (my first dose in three weeks).  I have no idea how I have come to be so lucky as to call this man mine, but I call dibs forever.

The wait-it-out plan is still in effect, and will not be diverted from due to this unexpected episode.  The reason is this: I want to know what Remicade's potential is for me.  I want to get off the prednisone and see what Remicade can do for me without the aide of steroids.  I want to continue on purinethol and Remicade together so that I can observe any helpful effects of the additional immunosuppressant (which may be protecting me from developing antibodies to the Remicade itself).  After the 5th infusion, I want to stay on Remicade alone for a few more to observe my reactions and how my symptoms change, even if they do not "clinically improve."  These observations are important to note before I start reintroducing supplement and dietary interventions (my original plan of action).  If my baseline level of pain remains at this slightly higher constant, and if I continue to have weekly intense attacks, that is important to find out as well.

With the help of H.B., oxycodone, my hot pad and some Mythbusters, I enjoyed a bit of chicken and rice with soy sauce for supper tonight.  I'll be alright.

Slaking the Compulsion

The Compulsion and P.M. aside, I actually slept in until 830am on Sunday.  Granted, there were about four half-consciously bumbled trips to relieve my ever-shrinking bladder, but otherwise an impressively sound sleep.

The Compulsion wins when I am unable to turn off the barage of "what ifs".  If I didn't have a car, I would have had to walk to the transit station at 6am in the pouring rain and black freezing cold while having an attack... and I would not have survived.  If H.B. wasn't also currently stay-at-home-boyfriend, I would not be able to solicit his chauffeuring services on days when I don't think I'll make the bus ride home without an incident... and I would not survive.  The Compulsion doesn't like to let me enjoy these small pleasures, these cosetting habits of which I take advantage, because it thinks that without them I would be lost.  Thanks ever so much, Conscience, for reminding me in such anxious terms that I depend on certain luxuries in order to function.

This weekend is the first that I can report, aside from the bloated pains of having anything in my gut at all, there was no major attack. ....?!! That's right.  The oxycodone bottle sat neglected on the nightstand.  For the first time in 3 months.  Another luxury on which I depended this weekend, without which I would not have been able to put together my journal club presentation, or edit my post-doc's manuscript, or write an already belated letter to my aunt, or put together Halloween gifts for the lab. 

You know something, though?  This weekend was lovely because The Compulsion and P.M. did not win.  It's just not healthy to assess everything you do in life based on how easy you have it while you're doing it.  I've earned my life.  What luxuries it has, I've proven myself capable of functioning without before.  Just because I'm living easy now doesn't mean I've forgotten how to work around obstacles when things are not so pleasant.  In fact -- and hilariously -- I touted that strength in my Statement of Purpose.  Never convinced that I have enough time (when I always make sure I do); never convinced that I'm not taking the easy way out (which usually results in my burning the candle at both ends).  I blame P.M. for revitalizing The Compulsion, but I blame myself for letting it rule over rationale.

There is always time.  There is always warrant for method.

Remicade Round III, and Other Stories

Epic events of the week of October 5th 2009:

1)  My boss brought up that he finally noticed that my face had become a planet.  He had been watching for it, apparently.

2)  I lifted an older woman off of the concrete at the entrance to the Hospital, where she had face-planted after tripping over that obnoxious yellow striped curb.  Approaching the scene, I was about six feet away from her when she fell, headed speedily toward my bus.  Seeing her mid-flight, I surveyed the number of samaritans around that might save weak, immuno-suppressed me from having to be the one to lift her off the ground; a hospital guard, the Veterans' bus driver who delivered her, and three other Veterans were present.  Nonetheless, none of them moved toward her... they just kind of peeked over at her without wanting to get any closer -- yes, the Veterans Hospital GUARD and the Veterans Hospital ESCORT -- and so I was forced to diverge from my path.  Crouching in front of her, I did as I was trained to do as a physical therapy assistant back in yesteryear, blah blah, a crazed and delusional encouter occurred.  I got her to a stable upright position, and glared mercilessly at the guard and escort who had stood by and watched a fellow employee of half their stature do their job for them.  "Is she okay", the guard shimmies toward me with his arms crossed to ascertain the liability of the situation to the hospital.  All she was able to coherently report was that she was fine and that she had fallen over the curb, which is what I relayed to His Daintiness.  Little does he know -- if he didn't deduce from my glare of death -- that he almost got his face punched in.  I may still have the compact build of a gymnast and walk like I'm six feet tall and own the turf beneath my feet, but it just doesn't strike me as logical to let a little girl pick up an older woman twice her build (indeed) when that kind of thing is in your job description for the express purpose of hospital liability.  Hopefully this woman was just crazy, and not carrying any diseases for me to contract.

3)  Monday's Bus Attack was mimicked yesterday.  The pattern of the Weekly Episode has been aggitated: this fourth "weekend" attack which I currently attribute (perhaps erroneously) to the shortening in Bisquik, has officially been three-days prolonged (possibly by the beets, for they were first ingested following Monday's original attack).  We're still looking at three days negative Throughput.  [What this means, I couldn't say.  Neither could my GI, because he is incommunicado.  Neither could his nurse, for she is not allowed to make medical speculations, apparently.]  Fortunately, I got home before the worst set in.  Unfortunately, I had to tank up on oxycodone before heading to my third Remicade infusion, which was delayed by an hour and a half because Wednesday nights are apparently peak traffic time for the Infusion Center.  No Tylenol because the oxycodone was based in Tylenol.  No Benedryl because Benadryl + Percocet = exaggerated sedation and constipation.  No poor reaction because, well, I'm a rock star.

4) Today, I learned to inject rats.  My coworker is on vacation beginning tomorrow, my boss is in New York until Monday, and I -- the Mouse Lady -- have been commissioned to do some palliative sucrose care for some rats who are not recovering ideally from past weeks' surgeries.  Coworker is the Queen of Rat Handling, among other things, and has prepared me well.  The only thing that can stop me from cosseting these sicklings is if my allergy to them activates, which, with the help of Remicade-Prednisone-Purinethol, will not be a problem!  Pretty sweet luck, eh?

5)  My new favorite part of the weekday is Breakfast.  In attempt to develop a habitual food-drug ingestion pattern, I've begun frying an egg with a piece of toast every morning, accompanied by the first of the day's drugs, and a few rounds of board game with H.B. before meandering off to the transit center.  The food is rather crucial to the Prednisone not causing nausea (and thus the additional ingestion of Promethazine).  The board game is essential to getting face time with H.B., which is minimal these days, and for pacing what would otherwise be an unnecessarily rushed morning (id est, I wake up at 530am and leave at 7am instead of 6).  Huge. Fan.

6)  The Pharmacy has me disgruntled.  They did not think that it was necessary to notify me that my GI being incommunicado, they did not successfully get him to renew my Prednisone prescription, which was, consequently, not prepared for me.  At all.  They thought it would be opportune to wait to tell me this until I confronted them.  Fortunately, I had some expired pills from last year's bout, for whatever good they did.  Unfortunately, the pharmacy only gave me three days worth of hold-over pills until such time as they could... do not a damn thing to move the instigation process forward with my GI. 

"Ma'am, I can see there is a record that Dr. S has been notified," says the kind pharmacy technician.

"Yes, I understand that, but he is out of town until the end of October and hasn't responded to the notice.  Since I need this prescription within the next two days, would it be possible to forward the renewal notice to my PC?"

"No, there is a notice for Dr. S so he should respond to it within two days."

"... <dumbfounded pause> Alright, but if he were going to respond, it seems like he would have done so already since I initially called in the renewal ten days ago.  Is there no way to renew the prescription through someone else since it is critical that I pick it up within two days?"

"No, the notice is in the box so he will respond.  If he doesn't respond within two days we will send a notice to someone else," she's quite on-the-ball, this one.

"... Is there a reason we can't just do that now given the time-sensitive nature of the situation?"

There wasn't a reason.  But there was also no going-around said non-existent reason... so I'll be calling again tomorrow.

I don't understand why they don't understand how to pick up a phone, but I know enough about the language and intertwinings of medical services to beat them at their own game of Feigned Idiocy... so I'm on them.

dirge of the adventure food

It waited, today.  It waited all the way through 9 hours of tissue preparation and number crunching until I stepped onto the bus.

I love getting attacks on the bus.  Really, and truly.  It proves a most suspenseful mission to hold in the fetal curling, labor moans and throughput.  Having made it halfway home on the first bus, I retreated into the Fred Meyer across the street and inhabited their fine IBD-friendly establishment for an hour.

As it happened, my bus pass had expired without drawing the attention of any of the bus drivers to whom I'd flashed it over the last five days.  The Indian woman beside me was kind enough to point it out as I clamored like Igor off the bus in front of Freddy's.  I thanked her (I think, but I can't be sure) and proceeded to engage in the activities of the above paragraph.

How fortuitous that I was in a Freddy's, whereupon regaining an erected spine I was able to get an October bus pass and stock up on rice cakes!  And how propitious that H.B. is currently also stay-at-home-boyfriend and was able to come pick me up... for there was no way on this earth that I would have survived another twenty minute bus segment in such a state.  The immediate acquisition of oxycodone was imminent.

In conclusion, Adventure Food of the week was a bust, and I have deemed it a little too soon to be eating even the most benign of cooked veggies.  And am somewhat embittered.  But, for beets?  Totally worth it. 

My GI is out of town until the end of the month, and his nurses know about half (graciously) as much as I do about gastroenterology (which I think is unfair to me), so I am left to speculate this one for myself.  The weekly Throughput appears to prefer the weekends, and to occur in short-lived bouts of unprecedented agony.  The pain continues to focus on my central intestine below the ileum, which, again, is a new location.  New location implies that prednisone should have quelled this fresh inflammation by now.  Seeing as it hasn't, we've either got some seriously increased obstruction from old scar tissue going on or the prednisone is working and IBS is taking the opportunity to mobilize in response to the extreme deficiency of fiber (and variety) in my diet -- the latter, only to mess with me and make me think I'm not recovering when actually I might be.  We will hope for the latter.

another step backward...

Tonight I made roasted chicken breast with beets (my adventure food of the week!) and onion (which I had to discard).  As soon as I put the dish in the oven, on came an attack quite similar to the one I had last weekend at Family Grill Night... only longer lasting, and more painful.

One major episode a week is fine.

One major episode a week when I'm eating as little as I'm eating while on three different kinds of intense medication is not okay.

What I love about roasting chicken is that it tastes perfect without any additional seasoning, which is great for me; the less rococo the better.  Even the safe seasonings like paprika and turmeric have their short-term risks, sadly.  Fortunately, oxycodone kicked in during the time my supper was roasting, and I was able to enjoy a small portion of it.  I can't explain how incredible roasted beet tasted after so long...

camping

When all is said and done, I can't say that I appreciate the rain following me down here from Oregon with such persistence, but it did serve the purpose of chasing me home from a deluge-esque, and health-threatening frolic in the woods of the Gualala Coast.

I had never seen this part of the 101 before; between Sonoma and Gualala is indisputably the most gorgeous strip of crashing waves, sea rocks and fielded cliffs I've ever beheld.  Seventy miles of curves right on the edge of the water.  Cows included.  Epic.

Yesterday was gorgeous - cool, but sunny and without wind - and the mile hike from the campsite to the ocean was (cue trill) also epic.  Having never been camping during a flare before, I noticed it was particularly difficult to watch everyone else devour sausages, chilli, smores and several nefarious fluids without partaking... I did finally give in and stuff a roasted marshmallow into my mouth.

For whatever reason - and I think I may have somewhat identified it now - my body decided to conduct Round III of the prolonged attacks of this flare.  On the camp ground.  Awesome.  Thank god for individually isolated restrooms.  Fortunately, I pre-funked with hyoscyamine, promethazine and oxycodone which, if they didn't serve to alleviate any pain - and they didn't - at least put me in such a state of mental turbidity that the agony of the first two episodes was diluted.  I stumbled back to my tent and collapsed straight into sweet drug-induced slumber.

And this morning, the rain came.  So we drove home.

Conclusions:  A nutritionist is officially necessary.  Why gastroenterologists have no idea what actually occurs during digestion is beyond me.  However, since I have identified a pattern between Rounds I-III of this flare, I can conclude that a nutritionist may be helpful in usurping its redundancy.  Without going into too much detail, it has become apparent that a week's worth of complex carbohydrates are simply sitting in my gut doing nothing more than nurturing unwelcome flora, and when I finally eat something that has the strength to push its way through - i.e. the tiniest bit of butter or fiber - everything comes out together, including that which has not yet been digested.  A veritable parade of the Untouchables of the gustatory world.  Huzzah.  I need a balance of complex carbs and other nutrients that wont destroy me on contact that will work together to go through me in a paced and "healthy" fashion.

Remicade plus 1

I walked out of the hospital last night without stumbling. No nausea, no fever, itching or any other indication of allergic reaction. They didn't prep me with the standard Benadryl mix either because I had so much painkiller in me already. This old post I found was very helpful in last-minute preparation.

H.B. survived his second procedure at my side; I have a hunch that as this continues he's going to experience an eventual inuring toward needles and IVs. My parents initiated him into the world of being my advocate. Poor thing has no idea how much this may interrupt his lifestyle. Maybe I'll be able to go alone to these infusions eventually. Until then, I am insuperably lucky.

This morning, I'm sucking down prune juice and amylase-heavy boluses of cracker. Oxycodone is sitting untouched on the dresser and all the pain left in my colon is masked by the discomfort of 6 days bloating.

Still shoveling 40mg/d prednisone accompanied by 100mg/d 6mp until the Captain indicates otherwise. I want a teriyaki chicken burger.