How to take Prednisone

Be patient. Please be patient.

I see far too many people on forums and at the doctor worrying about how quickly prednisone will do its job, and how quickly they can safely taper off of it.

It is so important while taking this drug that you understand two things:

1) Prednisone works at a different rate for every person and every flare - it will not perform the same way in your body twice.

• Langhoff et al 2004, Euro J Clin Pharm
  
• It takes only 7 consecutive days of prednisone for adrenal suppression and dependency to occur; fatigue after a few days is an indication that prednisone is doing its job. The more you split up your doses, the slower the effect takes hold. If you can manage taking your full dose at one time of day, the hormone response will do its job more quickly.
  
• 7 days worth of prednisone is sufficient to induce insulin resistance [Pagano et al, 1983, J Clin Invest], which is what is responsible for high blood sugar, fatigue, weight gain and intestinal bloating. NEVER FEAR - much of this can be helped by keeping your glucose uptake low while on prednisone ( I recommend Boost Glucose Control).
  

2) Yes, the side effects are miserable. Prednisone (along with many other corticosteroids) is messy and intense... but it will always clean up a fresh flare. And it is so important that you allow yourself to taper off of the drug slowly; the consequences of draining your body too quickly are even more agonizing than the drug itself.

• Prednisone is a corticosteroid. That means that in your body it is directly involved with your major stress hormone axis, beginning at your adrenal glands. Since your adrenal glands are part of your endocrine system, the high level of steroid interference will take control of regulating of the hormones that control your stress and immune responses. THIS IS GOOD.
  
• Specifically, the metabolite of prednisone, prednisolone, mimics the effects of adrenocorticotropic hormone (ACTH) that is naturally produced by your adrenal glands. By producing the steroid for your adrenals, the drug conditions your glands to NOT produce corticosteroids on their own. Tapering off the drug when you are ready is crucial to do slowly because it re-trains your adrenals to produce corticosteroids for themselves.
• If you taper too quickly, your adrenals may not adequately recover their moderating function. In this case, you can develop Addison's disease. Do not fight your gastro on this one!
  
• Chronic prednisone adequately replaces your body's ACTH production which is what allows it to suppress your immune response. However, another corticosteroid called DHEA is uncompensated. The deficiency in this particular hormone is responsible for imbalances of sex hormone production, bone health, and neuropsychiatric status (aka irritability) [Friel et al, 2006; Altern Med Rev]. NEVER FEAR - combat these risks by getting sufficient calcium, reducing salt intake and talking to people about what is going on with your body. Support is a very influential factor.

Patience is probably the most key factor in keeping side effects minimal, and making them disappear as you taper off of the drug. This is a difficult therapy to endure, especially over long periods of time. It is helpful to be able to talk to someone who has been on prednisone or who thoroughly understands its wrath in order to keep yourself sane and to recover with aplomb.

touché, Bisquick

Recently approved edible solids: rice noodle, refried beans, potato.

Recently learned non-edible solids: Bisquick.

For the abominable crime of indulging in a new solid food today (in prolonged celebration of checking off a certain exam), my third major attack of this episode assaults.

It's about 2/3 what the first two were in terms of pain - ultimately quite worth it, by the way <crosses fingers in abject fear hoping that it doesn't get any worse> But really? Really, intestines? Bisquick in water with no eggs or even rice milk, and only a pinch of baby food bananas to suggest flavor?

It was the shortening, wasn't it? It had damn well better have been the shortening, because if my system is kicking back flour after 2 weeks of prednisone I'm going to be severely agitated. To be fair, however, it is just as likely an issue of having too much weight in my tummeh in general. I did, after all, have some oatmeal, 2 small pancakes and some baked potato strips all today, with two glasses of water and some tea. <smiles innocently>

beans!

Today, at ten hundred hours, my first GRE experience came to an end.

Scratch that -- this post must rightfully begin at its rightful beginning.

My brilliant plan was to wake up at 530am, allow my body some time to adjust to being upright, possibly load it with some Ensure and drugs, and hopefully get any cramps or junk out of my intestines before heading off to the test center.

This was not what occured. At 530am, my alarm did not go off. At 622am, I jolted up in bed to realize that my alarm had not gone off. I did not shower, I did not eat, my stomach received no ablution. At 640am, I left my house to go take this damned GRE.

And at 1030am, it was all over. Fortunately, my ten-minute break came just in time to accomodate the inveighed grumbles of my gut. Otherwise, the rest of the exam proceeded without pain or aggitation.

My raw scores were mediocre, but above-average enough to get me into school. Hopefully, the weighted scores will be higher, but in any case, they will be neither my ruin nor my prized asset.

And I am celebrating by throwing all care to the wind and eating some refried beans. Yes, those savory legumes which have taunted me for weeks on end now sit satisfyingly on my tongue. If I am lucky, this indulgence will not result in hours of toilet agony.

... why in god's name am I craving to study for the GRE Biochemistry subject test?  It's the Compulsion... I haven't planned any projects to get myself through all the after-work hours this week, and the Compulsion is upset.  What terrible debriefing skills on my part...

on the practicality of scientists with health problems

In the interest of re-endowing this blog with its intended voice, it has become necessary to divert from the traumatic events at hand.

I have been reading a biography of Galileo Galilei, and stumbled upon a thought that - quite oddly - I have yet to address in this blog. The practicality of scientists with health problems is one of the most inchoate issues in science. Nobody talks about what it is like to pursue an intense academic career under physiological strain. I decided, after a more in-depth education on Galileo's chronic arthritic and rheumatic seizures, that it was time to give this some serious regard.

Galileo, while employed as a mathematician at Padua, was maimed by a 16th century air conditioner. Italian villa AC consisted of a conduit which delivered cool air from a mountain cave on a hot summer day. Unfortunately, one particular cave sported noxious vapors which proved fatal to two colleagues after an afternoon nap, and left Galileo with a chronic flares of pain which, for the rest of his life, confined him to his bed for weeks on end. The godfather of physics was intermittently bedridden for most of his successful career.

Of course, time was a different thing in the 16th century; a "minute" was not even a calculable unit of time, and canonical hours were long. Galileo's observations of pendulum motion, in fact, would be instrumental in the standardization of time measurement. Modern time, however, may seem to suggest that a scientist does not have time to be ill, and I would like to propose that this is not necessarily true.

I have come across a very unique book called Faculty Health in Academic Medicine: Physicians, Scientists and the Pressures of Success. It is the first of its kind to conceptualize the influence of these careers on exclusion of personal well-being, and design interventions within academic systems. However, this resource, albeit outstanding, does not address physicians or scientists entering the academic world with pre-existing conditions, which is the nexus of this discussion.

My general philosophy on pursuing demanding goals with chronic health problems is that you are forced to develop creative ways to maneuver obstacles. Creativity being an essential component of being a scientist, this is excellent skill conditioning!

For instance, I am currently negotiating a balance between a severe Crohn's flare, studying for the GRE, applying to graduate programs in Neuroscience, and maintaining productivity as a research assistant in a Neurocytology lab. It is proving to be very demanding on my creativity and efficiency, but I am by no means straggling. Burn-out is perched, minatory, on my shoulder, and I am finding that my greatest battle is not with keeping up, but with the frustration of anxiety.

What if my study regimen is not sufficient? What if my boss does not write me a strong letter of recommendation because I have missed a week of work? What if I continue to miss work? What if I am too stressed/ill to prepare my scheduled presentation for Journal Club? What if I am still so ill when I take my exam that I perform poorly despite good preparation? What if Stanford rejects me because they suspect my illness will dampen my contributions as a scientist and hinder my ability to bring in funding?

These fears are not unfounded, but they are more damaging than are their realities. I found an article with some interesting set of statistics regarding scientists with "non-apparent disabilities [such as]... chronic illness such as celiac sprue, a psychiatric condition such as bipolar disorder, or even a history of childhood cancer":

• "According to the National Science Foundation, 5.4% of employed doctorate holders working in the life sciences in 2001 were disabled. While NSF stats suggest that working science and engineering grads with disabilities make as much money as their peers, their statistics - as well as the sharp difference between the percentage of life scientists who are disabled and the percentage of disabled persons in the general population - suggest disabled scientists may have difficulty finding jobs. In 2001, 27% of science and engineering degree holders were out of work, versus 10% of S&E grads without disabilities.

• "Disabled doctoral degree recipients appear to form postgraduate plans that are roughly similar to those of their peers without disabilities, with 26% choosing academic employment, 17% choosing industry, and 38% planning post-doctorate study, compared to 22%, 22%, and 39%, respectively, for non-disabled individuals."

This suggests, to me, that while it may be more difficult to convince academic institutions to invest in a chronically ill scientist, it is certainly not impossible, and definitely sustainable. My ambitions are not to become Stephen Hawking, but I do want to spend my life asking unique questions, suggesting prolific theories and teaching. Presentation deadlines and funding demands do not scare me. I have proven myself capable of obtaining research funding, performing protocol, interpreting and expanding on implications, teaching and learning.

Crohn's disease is particularly destructive under conditions of chronic stress. This is a serious concern in careers of academic science because stress is what Faculty Health and Academic Medicine cites as the primary cause of scientists neglecting their health. No kidding. I firmly believe that there exist ways to maneuver academic demand in such a way as to limit the potency of stress. Perhaps I will find them in this book, and perhaps I will find them through experience (likely, learning the hard way as is typically my preference...).

Pythagoras had epilepsy, Thomas Edison had diabetes, Albert Einstein was dyslexic, David Bohm had chronic depression. I will make great contributions to modern neuroscience.

Additional Resources:

Able Scientists Overcoming Disabilities

Disabled Scientists with Successful Careers

...but it wanes

Two things happened today:

1) My boss mentioned how awful his GRE scores were and that he didn't think he could get into Stanford's program today. He then commented that many people who he deems scientists worth training apply to OHSU with scores barely breaching 1000.

2) I tried to eat some rice and nearly died.

My reactions to these things were as follows:

1) Inspired by my boss's honesty, I went home and did another practice test using scratch paper this time instead of trying to train myself for speed by doing everything in my head. 20% improvement. :) My boss's vitiating of the general GRE was inspiring. This is a man who I respect a great deal; it is exceedingly rare to find in one person a great scientist, mentor and boss. So I have decided, with the help of his accidental encouragement, to concentrate on my health and let the test go what way it will. If Stanford refuses to interview me because my algebra and vocabulary analogies are mediocre, it is truly their loss. Well... and mine, because I would miss out on their Masters of Medicine program... but mostly theirs. The 20% improvement is also very settling.

2) I'm fucking sick of Ensure, broth and emulsified cracker. So I attempted the unthinkable: Jasmine rice. Five minutes later, I repented. Very, very desperately. To the gods of Kobol.

On a more relevant note, Dr. S got back to me today and said exactly what I expected him to: if I'm not getting any worse, stick to the prednisone and try to tough out the lack of diet. Prednisone doesn't work at the same rate for all flares. I am hoping that if I shift my concern away from the GRE (having accepted its overly dressed self-importance) and focus on staying happy and calm, I will sooner be able to enjoy such tasty things as... potato!

the wanting comes in waves

Forcing my calorie-deprived brain through the truculent process of studying after talking about and doing science for 8 hours is frustrating. I'm tired, I'm irritable and even though I've accomplished what I wanted to this afternoon, I feel defeated. You would think that obdurate nature would be more helpful during times of much-needed motivation. Unfortunately, my obstreperous intestines have so lowered my blood sugar, caloric intake and, thusly, my sanguinity that I'm finding it very difficult to keep my spirits on top of this one. <slakes three GRE vocab words!>

My exam is in three days. I have three afternoons to recalibrate my attentions toward algebra, 8th grade level reading and debate tactics. Easy, no? 1 hour of math, 1 hour of reading/argument, twenty minutes of vocab. Why don't I feel the slightest intimation of improvement? Why, after every time I take these practice tests do I get the same fucking score? When I'm feeling rational (aka, before I come home from work on an empty stomach), I remind myself that there are almost zero calories feeding my brain. Therefore, in theory I should be doing worse on the tests than I did back when my brain was being fed. The fact that I'm doing the same although my brain and body are in worse condition should indicate that I'm doing well despite the circumstances, yes? Yes.

Unfortunately, my Stubbornness is of a mean turpitude. Instead of propitiating rationality, it works in sedition against me. It preaches that I am above physiological disability, and that despite illness I should be a genius at everything. It knows that I am an amazing scientist, and have incredible things to offer the world of medical research besides a rococo GRE score. It knows that if I absolutely bomb a portion of the GRE I can retake it at the end of September when I get back from California. <knocks out 4 more GRE words>

But my Stubbornness yields me no respite. It furtively convinces me that instead of giving myself some slack through this health crisis, I should continue to push myself extra hard, and punish myself all the more for not showing more confident practice scores. <dourly shuffles the last of the uncertain GRE words into the mud and watches them suffocate>

crash and burn

Well then. I have used my scientific analytical skills and deductive reasoning to ascertain the culprit(s) of last night's relapse. Weighing in at 1.5x as painful as this flare's initial attack, striking an epic 9.9 on the richter scale and legitimately petrifying my boyfriend into thinking I had gone into labor... last night's attack was (drumroll...)

... due to two slices of gluten- and allergen-free tapioca bread?

Seriously? Really?

Since gastros always tell you to eliminate dairy and fiber from your diet when dealing with Crohn's flares of any magnitude, I'm introducing solids back into my diet by way of the gluten-free realm. Safe, right?...

That's right, folks. I was so impressed that six days of prednisone had allowed me to keep down Lipton Soup Secrets noodle soup and a few Nilla Wafers that I strode boldly into the land of gluten-free starches to put some taste back on my pallet. I am willing to suggest that this was one of the worst mistakes of my life. Well... this mistake was, perhaps, not the tapioca bread but the fact that I brilliantly decided to sample the other goodies I found - a few puffs of Veggie Pirate's Booty and a small cocoa-tasting cookie thing.

CLEARLY this was too much excitement for my Nilla Wafer- and broth-fed tummeh. Good god. Two+ hours of some of the most violent pain of my life. I opted for 15mg oxycodone as opposed to heading to the ER for a morphine/anti-nausea drip at 1am the day I was supposed to return to work.

Oddly enough, I had the energy to actually go in to work today. At 7am (courtesy of my stay-at-home-boyfriend and chauffer). I know - I was shocked, too. And now I'm studying... I have no idea how the stimulant perk of prednisone chose to kick in at 6am this morning, but shit am I happy about it.

The only problem with going to work and trying to study all day is that... well... I'm freaking hungry. icanhaz toasted onion bagel with vegan shmear, lox and capers??

Conclusions: 6 days of 40mg prednisone was not enough to quell this flare, and new foods no matter how disgustingly mild should be introduced one at a time!

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.

scratch that again - T minus 30minutes to Remicade

My mother is magic. They're going to triage me because of the severity of my condition. Why they needed to hear this from my mother and it had no weight when I said it this morning, I have no idea. But it worked. So I'm off.

scratch that - T minus 3d to Remicade

I thought it was noteworthy that less than 1 hour after I confirmed my appt. for tomorrow afternoon, someone called me to postpone my appt. because the infusion center is short staffed.

I work in a hospital, I understand that this happens, but I still hate it. Two more days of being drugged out of my mind and being nearly completely dysfunctional. I lose two more days of studying, I can't go into work on Monday to pick up all of the pieces that have fallen apart since I've been gone this week, and it's going to be harder to make sure I get my second infusion on Sept. 5th with no exceptions because my flight is on the 6th.

I'm so pissed off. And my stress level just shot through the roof... so much for that streak of aplomb.

T minus 1d to Remicade

My biased assessment tells me three things:

1. that prednisone is working after 4 days,
   
2. this flare is indeed from newly disturbed tissue and not previous scar tissue,
3. Remicade will be the solution and I will not have to undergo surgery 8 days before the GRE and two weeks before I go to California to meet with my academic future.
   

My unbiased assessment, on the other hand, has me concerned that

1. the prednisone may not be working as well as we hoped,
2. I am only deflecting the pain with oxycodone and by not eating anything,
3. this flare may, in fact, be from old scar tissue and I may, in fact, need surgery... god damn it.
   

<takes a moment to actually call Dr. S's advice nurse to inquire about symptom progress as I was told to do>

Vicki says, "Bless yer heart... well, we're going to go ahead with the Remicade infusion tomorrow and treat this, for now, as if it is a fresh flare."

Cool. From the horse's mouth. As I assumed, four days is not sufficient to be able to tell whether prednisone is or is not working. It's not just because I've also been on constant oxycodone which is blurring my actual symptoms. It's also not just because I'm still on a liquid diet because baked potato didn't go down well.

If I do need to progress toward surgery, I will find out in a few weeks. Hopefully after California. For now, I will put off studying until Sunday, by which time I shouldn't have to take oxycodone and should be able to study. Next week will be a studying powerhouse, which is probably a better style for me anyway.

drug malaise + studying

I woke up today in a bent of depression. I've missed three days of work, all spent in a blur of drugs, pain and sleep. With the stimulatory effects of prednisone now battling the suppression of the oxycodone and promethazine, I find myself in a limbo of consciousness where I can neither sleep or focus in an adequate way.

I decided that now was an opportune time to play around with that psychological rule of learning: if I attempt to study when high, will I then have a better chance of performing decently if I have to take the GRE under-the-influence. Oddly, this served to alleviate the depression instead of exacerbate it. Hilarious relief.

My point of struggle in studying is with reading comprehension. I find it stupid that the single test parameter that got me recruited for TAG (talented and gifted students) and advanced course placements is now my downfall in standardized testing. <takes a minute to giggle with disturbing hysteria>

The disappointment in this activity is that I can't see straight, so not only am I trying to focus on content/context... but on reading the words themselves. It is deliciously pleasing, however, that I'm managing to do just as well if not better whilst high than I do when healthy. I think a great deal of this success should actually be attributed to my newfound ability to hold testing tips in my mind while "assisted".

For instance, my reading comprehension tricks are to mine the first third of the passage for main idea and purpose, then answer the first questions which usually pertain to what the author would say about such and such and what is the purpose of this passage? I then return to the passage when the questions become detailed. I paraphrase each following paragraph keeping track of target words. From there, I can detect the fishy answers in the remaining questions by the way they fit into the main ideas and paraphrases, and easily identify the correct answers based on how they relate to the target words or paraphrased paragraphs. Granted, I have not used these tricks yet while sober, but it is comforting to know that they improve my malaise performance.

Remicade...

Based on the condition I was in yesterday - stuffed with painkillers, prednisone and promethazine - I expected today's appt. with Dr. S to go smoothly. Dumbly. This morning was more like an indolent rendition of Sunday's pre-ER bout. Ten minutes after waking up I was planted in that oh-too-familiar place of bowel boot camp until my escort arrived to drive me to the hospital. Thank goodness I had a twenty minute window devoid of not-so-friendly fire during which to speed to the clinic.

This was the first time my new doctor had seen me so ill-composed and delirious, so he took the problem seriously... as much as can be interpreted from a man of medicine who speaks in analogies and terribly limpid metaphors. I love Dr. S; he is straightforward and caring and extremely quirky.

Since, after two days of prednisone and oxycodone, I was still in miserable shape, my options were laid out as follows:

1) If the prednisone begins to do its job by Friday (two days from now), and if my TB test is cleared (which it will be), then I will begin Remicade this coming Saturday afternoon.

2) If the prednisone does NOT begin to do its job by Friday, and if I continue to writhe in inexorable pain during that time, then I will be admitted once again to the ER and register as an inpatient so they can feed me saline/morphine/food through an IV until they figure out which section of my colon they want to remove.

As you might imagine, I am voting for the former. Remicade is not an exciting prospect, but I much prefer it to having my insides taken out and the entire next few years of my life destroyed.

As of yet - mostly because I am still so very high on painkillers (which Dr. S demanded that I take MORE of, btw!) - I have not thought too seriously about what will happen to my un-accommodated GRE exam in two weeks, or the destruction of my job, or the annihilation of my two week frolic to California in mid September to flirt with the primary investigators at Stanford and USC who have so graciously allotted time to learn my face... a face that, by the time I meet them, will indubitably be covered in steroidal acne and sporting hefty chipmunkness.

No, no. For now, I will take my drugs and take care of the most immediate ramifications of illness: finding someone at work who can pseudo-perform my most important tasks while I lay bed-ridden for the rest of the week, and finding a way to study between drug-induced naps.

I am by no means broken, and am looking forward to whatever needs to be done to make me well. If I bomb the GRE as a result, I will apply anyway and bank on my performance in all other areas of interest. And I will continue to live off of broth, Ensure and baby food.

GRE registration mayhem

For all those who register to take any ETS exam during a period of remission, a word to the wise: your condition may resurface at any time - plan ahead.

ETS is no better than any other bullshit company who makes its profit by performing one task and one alone. And even that task is performed in a malaise.

After returning from the ER this weekend, where the last 2.5mos of symptoms finally culminated, I attempted the impossible: getting disability accommodations through ETS for a previously scheduled exam.

Basically, their policy is that "if you had a medical emergency, you're out $75-$225". In their defense, I may have navigated the loopholes of this process more efficiently had I not been high on morphine.

What happened:
I called ETS to see if I could receive disability accommodations to be applied to the date of my previously scheduled exam (the end of this month). They told me to immediately cancel my current appt., submit request forms to the disability branch and re-register once I'd received approval.

What went wrong:
-I was NOT told that requesting disability accommodation (yes, even something as simple as extended time) had to be done by snail-mail or that it would take a minimum of 6 weeks.

-I was NOT told that a full refund of the original cancellation depended on approval of accommodations.

-I was NOT told that the number which I was given on the website actually doesn't work anymore, and that I'd have to make my way to the correct disabilities department through a chain of transfers.

-I was, lastly, NOT told that the departments involved in ETS registration and accommodations don't actually know how to help you with what you are told they can help you with. They are impersonal, they do not try to figure out how best to help you and it WILL result in your being screwed over if you are not in the condition to advocate for yourself. [note: yes, some of these are obvious, but not to someone distressed and high on painkillers]

Words of wisdom:
-If you have ANY suspicion that your remission may see its end by your desired test date, apply for medical accommodation with a two-month cushion. Do not wait until the last minute. Because I am applying to schools this year, I can't take advantage of this option (even though I had an unexpected medical emergency).

-DO NOT register for a standard test until you have received your letter of approval from ETS Disabilities.

-the computer adaptive test (CAT) IS available to those who need accommodations, even though ETS makes it seem like you will be restricted to the paper form offered only twice a year.

12d to the GRE

Well then. It seems that I've finally caught up with myself. At 9:20am this morning I began my first full GRE practice test - timed - since the initial assessment test. Ten minutes in, I had to retreat. I planted myself on the toilet with a heating pad in the most agonizing pain and horrendous diarrhea I've felt/had in over a year. I stayed there for three hours. The only thing that challenges this episode is the bout from last summer when I vomited up straight bile for four consecutive hours before passing out.

When, around 1230 this afternoon, I finally decided I could survive the twenty-minute ride to the hospital without shitting out my intestines, Heroic Boyfriend took me into the ER. As usual, they pumped me full of saline and morphine, prescribed a buttload of oxycodone and prednisone and sent me on my merry way.

I will make an effort to inquire as to the possibility of a non-timed GRE examination. Just in case prednisone doesn't begin to do its job over the next 12 days, I want to have an option other than walking out of the test with nothing. As deadline dictates, however, I must take the CAT version if I still hope to apply to schools this year. The CAT is not really available non-timed... I suspect. Who the hell knows, though. I will have a note from my doctor from my scheduled appt. two days before the exam. It's possible.

I am disgusted that a diet of Boost, baby food and potato sent me into such a violent flare. I'm debating whether or not to go to work tomorrow. I am not debating whether or not studying today might be worth it. I will save the practice test for a day when I am not deathly ill and high on painkillers. How I perform on the GRE is of little importance in the scope of my career. If I can get an interview with my current repertoire, I will be in. During the interview, I am convinced that I will impress, and the GRE will be neither damaging nor stunning.

The rest of today is for lassitude.

18d to the GRE

Tuesday morning: Boost, 6mp, levisin, peppermint pill, probiotic.
Tuesday afternoon: Boost, ginger pill, levisin.
Tuesday evening: baked potato, peppermint pill, minus a cup of blood.

Symptoms: nausea (the kind that you get high in the stomach when you vomit nothing but bile for hours on end), fatigue, pain (stomach and intestinal), diahrrea, blurred vision, and an insane craving for Chinese food.

Well, I haven't studied for two days and I'm feeling anxious. But not enough to try to study between running to the restroom every ten minutes. I think I'm still on the right track, though. It can be done. I keep having to remind myself that the reason my scores aren't improving on the practice tests is because I'm not focusing and my attitude is, "I'll do better when I'm more alert"... as if magically I'm going to be more alert and less nauseas 18 days from now.

I plan on taking the practice exams in sections from now on (still timed) instead of all together. This should help the maintain focus. Should. I have no interest in masking this - it's fucking hard. The material is simple, but the task of focusing and blocking out the pain and the malaise and exhaustion is... well, exhausting. Honestly, my motivation to do well at this point is so that once it's overwith I can meet with my prospective mentors in California the following week with pride and purpose.

I'm finding the confabulatory prognostication of failure and defeat to be more harmful than helpful, as usual. Therefore, my goal for the next three weeks is to concentrate on what I'm doing now, and agree with myself that if I study assiduously, the outcome of the test will be indicative of that. Baring in mind that I am not a genius, and, in fact, have other qualities that trump that quality, I can be content with an above-average score... which is usually where I fall academically.

Speaking of research experience (which is my second most attractive scientific asset), I'm actually writing this at work. Truth be told, when my boss is out of town and my coworkers don't even see fit to come in, I have no quams about sitting here writing for the bulk of my time. I feel no obligation to perform above and beyond when my boss is not here. So I'll write, I'll get the critical parts of protocol done, I'll read some journal articles, I'll run to the restroom about twelve times, then I'll catch a bus home and hopefully be able to study a bit during the ride... and not have to get off the bus and waddle to the nearest public restroom and finally find one only seconds before... you get the idea.

This is a bit how my internal pep-rally goes:

I am not an academic prodigy, but... I have intelligent creativity, tremendous work ethic, astronomical ambition, indestructible curiosity, a history of begetting and carrying-out great things, and a unique ability to write and communicate that almost zero scientists that I have met can challenge.

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?

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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.

the naturopathic method

What kind of environmental activist would I be if I didn't indulge at least once in the digestive supplement movement?

I've actually tried supplements before, but in a more half-assed and unenthusiastic way. Various enzymes have all made me supremely nauseas in the past, so I turned away from the prospect of non-pharmaceuticals. Ten years later, now that the pressing symptom is, itself, nausea, and because my doctor isn't able to see me until the end of the month (after waiting for two months already), I'm revisiting the realm of botanical medicine. Below is the assemblage of my arsenal:

GINGER. Because the newest and most severe current symptom is nausea, I have been adding ginger chews to my astronomical intake of tea (which I have drastically decreased from eight to one or two mugs). Riyazi et al reported in 2007 that several compounds in the volatile oils of ginger root have antispasmotic effects. They are but one of several instances of this observation. So I will begin with 1-2 chews a day, which equates to ~1/2tbs ginger oil.

LICORICE. I have written before about the digestive benefits of licorice. The deglycyrrhizinated licorice chewable tablets (DGL, fructose free) I'm about to begin taking somewhat deviate from my original suspicion that glycyrrhetinic acid was the more prominent anti-inflammatory constituent. Glycyrrhizin is the sweetening component of licorice, which is helpful if you are using pure licorice root at low doses. However, what studies have targeted the anti-inflammatory benefits in humans (Meletis and Zabriskie 2008) of higher exposure of other chemicals in licorice root. Since these are more benign and helpful in higher quantity, and glycyrrhetinic acid becomes harmful (auditory and visual side effects) had to be eradicated. Licorice is typically a more colitis-esque approach, but I'm giving it a go.

PEPPERMINT OIL. The intestinal mucosal complements of peppermint are far from obfuscated. In fact I'm sure I've written about them, too... somewhere. Peptogest is my new favorite oil tablet because the uncontrolled release of teas and leaves does more harm than good. The timed release of concentrated peppermint (menthol, particularly) is essential to getting the chemical to the intestine without releasing in the stomach where it is a known irritant.

PROBIOTICS, HONEY and GARLIC. My final and key player in this offensive is Ultimate Flora Critical Care 50 Billion. I figure, if you're going to do probiotics, go full throttle. I've heard good things about this particular breed of gram-positives. There is a particular sugar in most honeys (fructooligosaccharides) that helps these little buggars to proliferate. This same sugar is found in garlic. So... honey garlic chicken, honey pancakes, garlic toast, honey garlic potatoes... my boyfriend's going to want to kiss me interminably.

Day 1. Here we go.

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.

preface

When this thing began, I kept a journal - a medical log, rather - of the progression of the disease. Diagnoses, drugs, successful and destructive food combinations, endo- and colonoscopy photos... I thought I was going to discover some profound pattern in my body's behavior.

The Crohn's baby responded: fuck you and your predictably-repetitive-universe hocus pocus - I will ransack your preconceptions of bodily behavior and mobilize a stealth squadron of endothilial destroyers from your throat to your ileum, and you will never know my next move! ... And so I abnegated, and stopped.

Ten years later, having overcome denial and admitted that an MD-PhD will probably be my undoing, I'm PhD-bound. And I know that there are other Crohnies in the world who are doing the same thing, but there is no support network. There is no way to gauge how much give to take, or how much push to shove.

So here I am, once again making record of how this process proceeds. It is my hope that it will serve as a resource for some, and that it will inspire guidance from others.