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...

blue skies, hail, nausea and wine

Monday mornings never sink me like they do many people in my midst.  Usually, I'm excited to begin whatever needs beginning on Mondays.  This morning has not been my average Monday.

It's beautiful outside, with a classically PNW combination of blue skies and hail.  It's very fitting with my acid jazz and manuscript-writing ambiance.  What doesn't fit is this biting maelstrom of nausea and acid reflux that I've had since last week (boosted, indubitably, by Boardgame Night's over-the-top partaking of 4 glasses of wine Saturday evening.. oops).

The manuscript is in the "accepted pending revisions" phase, as I choose to interpret it.  So in a mish-mosh of protein analysis, scoping and drug administration, I'm finalizing my fourth first author paper.  It's not that I don't enjoy this kind of day, sans the physical irritations, but I want nothing more than to sit at home in my calmly lit reading chair with a huge pot of tea and my book about George, Nicholas and Wilhelm and the events leading up to WWI, pop a promethazine and wait for sleep to catch me before emesis does.

But I will resubmit this manuscript first.

It's a Moondog kind of day.

cry of the neglected tummeh

Alright, I can take a hint.

I've been far too stressed, eating too many salts and sugars, indulged in a little more wine than I should.  Or, I have a stomach virus.  The fatigue, nausea and pain are indicative of either.

For the second day in a row, my gut is calling out for attention.  "Drug me!  Heat me!  Love me!"  I'm not a thrilled.  But I totally deserve it.  Perhaps its also calling, "Slow down!"...

I'll give it another day or two before I implement Prednisone or Promethazine.

in which i grow tired

Well, I am broke.  Thus far in October, I have had eight separate doctors appointments spanning five doctors.  I have three more -- count 'em, three -- this coming Wednesday before I head south to Willamette U. to be on a career panel for up-and-commer scientists and then get infused with Remicade before flying to San Diego for my first major conference.  With all due gratitude to my government bosses for providing excellent coverage for their employees, never underestimate the paycheck-dissolving power of copays and prescription fees.  I can no longer afford to eat sushi twice a week.  Woe is me!  My bedside table is officially over flowing with all my vials of drug, and I'm not entirely sure that my body is tolerating them either.

However, our home is thoroughly draped in Halloween splendor and this Saturday's party -- whether or not my guests decide to appear in costume, ahem -- will be well-worth the cooking frenzy (let's not kid ourselves -- I am not above a last-minute run to Costco to make sure the meal is edible).  And Sunday... Sunday is reserved for horror flicks and football.  Hell.  Yes.

The cycle has snowballed, and I am, as yet, uncertain whether it is calming down.  Despite all the more tangible symptoms, the fatigue is what is most getting in my way.  Because of the fatigue, I don't run in the mornings.  When I don't run in the mornings, the depression comes on all the more easily.  When the depression sets in, I don't sleep because I spend the evening terrorizing and bloating my sinuses.  When my sinuses are bloated, not all the sinus irrigation/flonase/sudaffed/fexofenadine or promethazine in the world can help me sleep.  And when I don't fall asleep, it doesn't matter how many times my bladder forces me to get up through the night.

Where is my colon in all this, you ask?  It's fidgeting on the sidelines trying so valliantly to get onto the field.  "Lookit me! I'm giving you car sickness every morning and every afternoon!" it wails, "I'm giving you the most delightful smorgasbord of Throughput and you're not even paying attention to me!"  Alas, my loyal companion, you have taken a back seat to other -- dare I say, more pressing -- issues.  Never fear; your time in the lime light will come again soon.

the Fall and the full

 Halloween approaches, and so I begin my ritual of orange-food gorging, pie making and home-spookifying.  This year, I have inherited a few decorations from my mother; among them, a porcelain child in ghost costume holding a glowing Jack-o-lantern which so encompasses all of my warm childhood memories of this very important holiday.

In honor of this conferment, and of all the new drugs I am on, I have decided to throw a small Halloween party this year.  To hone (read: stumble embarrassingly through) my hostessing skills?  To give my apartment some personality and to fill it with warm and spooky company?  Because I am feeling well enough to truly enjoy the season?  Perhaps all of these are their own motivation.  However, it's mostly because I want to make edible eyeballs out of lychees and grapes and hide them in peoples' soup.

In the spirit of the winter season, the beautiful rain, and my venture back to a balanced state of mind, I have visited enough doctors and filled enough new prescriptions lately to account for well over half of my paycheck.  The elusive urinary tract syndrome, which has been addressed by GI, primary, OBGYN and urologist is being treated with yet another antibiotic which seems to be at least participating in warding off the next episode.  The outer ear infections are being treated with antibiotic as well, and the crusted plasma-oozing sore behind my right ear is being treated with a clever combination of cortisol and athlete's foot creams.  The dermatologist assigned to me The Next Big Thing in acne antibiotics and tried to convince me to try Accutane (yes, on Remicade.  yes, I rolled my eyes at him and explained what Accutane is, what Remicade is and what a liver is).  My nasal exoskeleton is on its third (or fourth?) week of the Allegra-Flonase-Sinus Irrigation trifecta and is being admirably defeated (read: the reasons I don't sleep at night are no longer because of my inability to breathe).  And lastly, I have been put on sleeping medication as a first serious approach to overcoming this ghastly depression which has been pwning me since July.  Promethazine finally procured although it took a month to convince my GI that the vomiting actually is impeding my ability to work (that's a lie, because work is going exceedingly well, but what's a girl to do?).  Now I just need to go to the dentist.  When I get my next paycheck.  And if I don't first spend that paycheck on Halloweeny Essentials.

This body is currently full with drugs.  Damn antibiotics for working far better than any Astragalus, Ashwaganda or l-theanine supplements I've ever taken.  H.K. remains, of course, my most effective medication.

This weekend, we acquired several very large and very face-friendly pumpkins.  Hamicar and Toby remain faithful guardians of our domain, although only when the sun is out.  Next weekend, H.K. has nobly volunteered to help me experiment with the Halloween menu items so that I don't kill any of my guests.  Successful recipes will be posted.  Unsuccessful recipes will probably also be posted.

sugar and spice, and everything disgorged

ugh. 

not good.  i do not feel good.  double dose of promethazine and some tylenol and i am still head-achey and flagrantly nauseous.

admittedly, i did have a lot of sugar today... not smart.  i do not feel smart.

this evening, i wanted nothing more than to eat my yukons scalloped in rice milk and read my book on Eve Ball.  alas, i made some poor decisions today (like not running; eating three mini gluten-free cornbread muffins, a quarter of a chocolate waffle and four pieces of salt water taffy; not drinking any water until 2pm).  not hungry.  i do not feel hungry.

i was hoping to avoid a repeat of the last year, but this whole back-to-where-i-was-last-April business is not promising.  not promising.

sick day 3: sit rep

I can't really tell if the nausea is due to revitalized pre-flare Crohn's, or from the absurd amount of drugs I'm taking for all the other symptoms that have suddenly arisen.  The pharmacists assure me that they check my file every time they prescribe me something new to make sure nothing clashes, but they are just as full of BS as anyone else, I find.  Just because the cross-referencing of two (or thirteen) drugs doesn't pop up a glaringly flashy warning sign does not mean they are safe to take together.  Did the pharmacist count the number of prescriptions I'm on that are 1-3x daily?  Probably not.  So I really have no idea what's going on, except that I feel like a zombie.  A very nauseated zombie who hasn't slept in 2 days.

Since I last posted (at 230am yesterday), I have slept about four hours, which is to say that I have slept roughly four hours of the last 48.  This would be totally tolerable except that I'm ill.  And since I know that lack of sleep is working against me in terms of healing whatever is wrong, I am particularly irritated about it.  I have accomplished, however, an excessive amount of movie-watching.  My heating pad has contributed more to the electricity bill over the past three days than during any other time during this current Crohn's flare (also impressive... I'm very impressed with the artifacts of this medical enigma in general, it seems).

Good news:  In the eb and flo of nausea, aching and other effects of what we will temporarily call "kidney infection" (even though that is clearly not what is going on), it escaped my attention that I have not had Crohn's pain for nearly five days.  Unheard of -- absurd!  And very, very encouraging.

As for the inauguration of Sick Day 4, I am off to urgent care shortly.

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.

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.

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.

two steps forward, one giant leap back

I was doing so well, I thought. Refried beans seemed to be fine in small amounts. The poached egg I tried two days ago had no negative ramifications. Even the small sampling of dry catfish I indulged in yesterday seemed to go smoothly enough; it did not stay in me for long. Last night I took it a step further and tried some chicken broth. Real chicken broth. From a carcass. Why did I think this was a good idea? Because after straining out what I considered to be all but the most benign coagulation of fats, broth seemed quite safe.

To my chagrin, a single cup of soup took less than 45 minutes to assault me with the most violent nausea I've had since beginning prednisone (3 weeks ago). Of course, we had guests over for dinner, so I was given the opportunity to demonstrate just how good of an actress I am. Apparently, I pulled it off.

This was not the usual nausea that began in May and for which I have been taking promethazine since. I think I'm recognizing a culprit, now. What happened last night was a very prominent type of heartburn. The type that sits too lightly in the stomach and wafts upward to petrify the esophagus. The kind that means hours of bile and dry heaving.

My suspicion is that the fats in the chicken broth were the final straw; my body had put up with beans, an egg and a bit of fish this week, and this was my portent.

I held out for three hours chatting and playing board games, trying to calm the frozen fire in my throat and bubbling bile in my stomach with hot tea. Not more than four seconds after people dispersed for the evening, I retreated to the bed to attempt to calm the swell with breathing, dark and quiet. I have never needed to take more than one dose of promethazine per episode, but last night begged it. This is one drug, however, that you do not fuss with; there is a reason the dose is rationed to one every 3-4 hours, and for fear of further upsetting my insides I settled with one pill... but god, how I wanted something to knock me out cold.

Today, it's back to rice noodles.

This is the longest that prednisone has ever taken to work its magic. I'm tired, I'm moon-faced and I have three important interviews next week.

crohn's and coeliac

Sunday morning: 6mp, levisin, peppermint pill, ginger tea, probiotic and oatmeal.

Sunday afternoon: split pea soup.

Sunday evening: levisin, promethazine, peppermint pill, ginger tea... baked potato and spinach.

Now then. Way the hell back in 1984, the two most prevalent instigators of Crohn's were dairy and wheat (Workman et al). However, most Crohnies are told that wheat is the lesser of the two evils and end up embarking on a primarily bread-packed diet, especially when ill. A decade later, there is a notably high prevalence of Coeliac disease in Crohn's patients (Tursi et al 2005). Huh... I wonder how in the world this might have happened.

[note: I reserve the right to use the scientific spelling of coeliac disease, since celiac is meant to be called the disease of the coelem...]

I have two working theories.

1) Crohnies seek out the most mild diet possible, including wheat breads to try to give some kind of nutritional value to the meager gustatory regimen and subsequently develop Coeliac or gluten-sensitivity due to the overload of gliadin and transglutaminases that are the trademarks of gluten/wheat intolerance.

2) Coeliac and Crohn's are actually cohorts.

I like the Tursi study because, unlike many medical case studies, it actually has a pretty thorough methods protocol (yes, I am particularly scrupulous about scientific protocol). When they conclude that all patients should begin a gluten-free diet upon CD diagnosis, this recommendation is sound. Namely, all of their case study patients were diagnosed with CD for the first time immediately prior to being subject to this correlative Coeliac study.

What I would have liked to see is the prevalence of actual villous damage in CD patients with antibody markers of Coeliac. This study, however, looked only at biomarkers of Coeliac, and not at histological damage. If most CD patients with Coeliac disease do not have villous atrophy, it suggests that Coeliac evolved after the onset of Crohn's inflammation, is in early or benign stages, and is the result of an elevated wheat intake (likely inadvertent) in the quest for a "Crohn's friendly" diet.

I would also like to see a study in veterans of CD to see what symptoms of Coeliac they exhibit, which would confirm or reject my working theories. A girl can dream, eh?

--

The point of this post is that I'm now trying to modulate (but not eliminate) my gluten intake... just for the hell of it. Coeliac disease has been discarded from my list of contributing ailments by several blood tests, so I'm not really concerned, but it is interesting.

24d to the GRE

T-minus 24 days to the GRE. Today, I could not care less about how I'm going to perform. Middle school level algebra, astounding vastness of vocabulary memorization and the most laconic style of writing imaginable do not scare me. After two months of studying for the MCAT, switching to the GRE seems somewhat of a let-down for a scientist. I'm not excited, I'm not nervous... but I don't expect to do well either because I don't care enough.

I continue to make contacts and arrangements with potential mentors whom I have impressed enough to meet with me in September and discuss my eligibility for the graduate programs and their labs. Encouragement from these PI's along with my CV remind me that my acceptance depends more on experience than the GRE... fortunately.

This attitude, though probably not common among Stanford and UCSF applicants, nevertheless helps to keep the stress level at a minimum. I have also been chronically fatigued and nauseas (both new symptoms) for the last two months. More recently, the frequency of IBD-esque attacks has increased as well. My doctor has been slow to attempt to target the causes or long-term solutions. I'm currently on promethazine for the nausea and my lifelong pal levisin for the acute attacks.

Promethazine is a godsend... except for the fact that its primary side effect is severe fatigue. Awesome. So I can no longer ride my bike to/from work because I can't get over the nausea without the promethazine and I can't bike safely on the drug. There goes my daily exercise ritual. There goes whatever help exercise was lending to the fatigue. There goes my stress-queller.

Solutions: primary liquid diet through work hours with mild solid suppers. I use the evenings to study and find it excruciatingly hard to focus with no weight in my stomach. Liquid nutrition helps the brain and body to function... but does NOT beguile the psyche into feeling like it is satiated.

Obstacles: the trick to overcoming my basline level of fatigue instead of fomenting it with promethazine and levisin remains elusive.