y'give me feeeeva

Music for a special occasion, when your immune system actually decides to get involved.  It's been over 2 years since my last full-fledged fever.

things i need to work on

I have an unfortunate tendency to let people walk all over me.  Sometimes because it is not worth my time [read: energy expenditure] to argue, sometimes because I am -- despite my best efforts -- afraid of appearing the "bitchy woman".

I am not a fan of when people try to one-up me constantly, especially when I have worlds more knowledge of the subject at hand than they do.  This is not easy to avoid in any profession where men feel that they must appear the wisest and most knowledgeable.  I test the waters on occasion when the opportunity arises.  For instance, in lab the other day the topic vaccination came up and I mentioned the fascinating tidbit that Edward Jenner had created the first smallpox vaccination in 1796, which I knew because I had recently read the book Pox: An American History by Michael Willrich.  My labmate responded, "oh yeah, absolutely" as if this was a very obvious fact of which he was obviously aware (which was not even remotely the case).

I am particularly not a fan of the general response to my willingness to ask people about their perspective or experience being interpreted as weakness or stupidity.  For instance, when I observe that a  colleague uses a different technique than I practice, I inquire as to the reasoning behind it.  I am typically met with a verbose pontification explaining what is trying to be achieved and why their method is best.  Thereafter, I typically share the method that I use and express interest in both methods working equally well (although, not to toot my own horn, but often it turns out that the way I do things is more appropriate).

An occasion arose this past week on Friday when I attended a lecture on the Jewish perspective on stem cell research.  The talk was fascinating and I went home that evening and did some research on as many religious perspectives on stem cell research policy that I could find (note: there are surprisingly few books on this subject out there!).  During the talk, the lecturer mentioned that in the 19th century doctors only received 1-2 years of schooling.  A renowned professor in the audience then quipped, "of course: one year for blood-letting, and one for leeches."  Needless to say, having read several books on the evolution of medicine in the 19th century, I cringed.  I wanted so badly to raise my hand an mention that this was actually because at the time, the surgeons and dentists did many years of both apprenticing and schooling, and performed 90% of all medical procedures as the doctors themselves disliked physical involvement, believing that it separated them from God and made them "dirty".  Of course, as meagerly as I would have phrased such a correction, I said nothing as I did not want to appear the "bitchy know-it-all woman".

Clearly, there are some things I need to work on.  Clearly, if the men around me have no filters for sharing whatever is on their minds -- be it correct or not -- I should not feel shame in doing so either -- particularly when I am correct.  Clearly, I need to remove the sign from my forehead that says, "please, walk all over me and try to one-up everything I say."  Clearly, I need to accept that I probably do not come off as bitchy or know-it-all in the slightest, and be more assertive and exert my presence and my contributions to the environment around me.  Clearly, I need to start being more bitchy.

inner peace

I left work early today.  It was one of several instances lately when I have thrown up my hands before the ten-hour mark.  And I began to feel that inner grumble that mobilizes behind a shield of guilt in preparation for the battle against your will to take care of yourself amid the insanity.

Not only did I leave "early", I bailed on a last minute evening venture to see family up north.  Instead, I made myself some soup (oh yeah, also have been working through a cold lately in prolonged immuno-compromised fashion) and watched a stupid movie.

Right when the army of inner grumble set to charge, my phone rang.  It was a call from a most dear of loved ones, with whom I had not spoken for the long long end of several months.  A medical student herself, she had called to ask for my neurobiological expertise [read: expertise is her word].  The conversation extended, as long-craved ones do, far beyond the initial subject culminating in "so I'll get you from the airport and we'll grab dinner before you give your lecture!"  But further, it ended in our both being reminded of who we are and how we once functioned when we were college roommates.  I don't think it unfair to say that I was far more in need of that reminder than she, and far more in debt to her presence in my life than she to mine.

Of late, I have underestimated myself to a greater degree than is standard.  I have fallen into the stereotypy of academia: feeling like I have to do everything in my power [and out of my power] to impress people at all times, and making absurd excuses to myself for why I cannot always be impressive, and do everything, and be excellent at everything, and be a brilliant scientist at every moment.  It's a very hard thing for me to admit that that is an unrealistic and unachievable expectation.  For I have somewhat of a Sherlock Homes complex [read: not the genius, the obsession], or what Francis Crick calls an inclination toward mad pursuit.  An obsession with making the puzzle fit and finding the right pieces and doing it all in a timely fashion [often inhuman] with minimal mishap and maximum impact.  And I get upset when I cannot accomplish this while also being a marathon runner and party thrower and regular soup kitchen volunteer.

This is because it seems, to me, that everyone around me is accomplishing all these things with perfect grace and professionalism.  In reality, I have very flawed vision and graciously give all these accomplishments to all people, when in reality they are divided among many.  My brain knows this, but my mind does not.  And mind wins over brain every single time.

My dearest, most remarkable and admirable friend who called this evening reminded me that I need to suppress the incessant need to impress people all the time in every aspect.  That I have already impressed them, and need to take care of myself now.  Advice that keeps her alive and  in balance these days.  And so I have quelled the inner grumble, and am at peace with my decision to bail on work and on social call to take care of myself.

SfN 2012

I love the Society for Neuroscience meeting.  I am beyond excited to explore new research and people and see New Orleans -- well, the French Quarter at least.

People act like traveling to this event is no big deal.  And to most, it isn't.  But organizing how I get to and from work each day and accomplish tasks and errands is as involved for me as traveling to this conference is for most people.  I am now what can be considered a seasoned veteran of the SfN extravaganza.  The meeting itself is dangling in front of me like an unimaginable treasure chest.  So on the eve of flight, I am Zening like a mofo [read: zoning on too many episodes of The Walking Dead with H.K. beside me].  Checking off the packing of forms, drugs, ER addresses and food supplements like a master, and doing everything in my power to avoid those panic attacks that have been cascading me into Crohn's episodes for the last 4 months.

This year I have 2 poster sessions, the first a requirement in light of my travel award.  And real, purposeful shmoozing.  I cannot wait.

This is the least healthy that I have ever been prior to travel like this.  And I'm so looking forward.  And so anxious.

in which i meet my Crohn mate

Y'all: today, the most exciting news surfaced.

Turns out, one of my most favoritest colleagues is a Crohn.

!!!!

I have never had an IRL friend who also has Crohn's!  With the exception of the most outstanding Kara, who I had the privilege to meet but once [thus far]!  But, y'all.  A new Crohn in my life?  In my lab??  Who I see on a daily basis?!

This is so epic, in fact, that when said colleague approached me today to have that serious and confident conversation, my first reaction was "no shit!" after which I proceeded to smile with glowing eyes as she explained her current condition.

Incidentally, I had just had that same serious and confident conversation with my BossMan after the episode from September 27th which knocked me out for 5 days.  He could not have been more concerned and considerate about the whole thing, by the way.  That's 2 BossMans in a row that have regarded me with respect and kindness even after learning my [additional] shortcoming.  Can I pick 'em, or can I pick 'em?!

grad school priorities #12

What I should have accomplished today:

Recovering from last week's trifecta of PCR, cloning and transfection failure.

What I did accomplish today:

Two free exquisite gourmet meals provided by my amazing building in honor of symposium day, and the purchase of ubernerd embroidered patches for my lab coat.  Met a fellow Crohn right in my own backyard!

OMGSUCCESS!

grad school priorities #11

What I should be doing:

Relaxing and feeling good about my convalescent accomplishment of ascending a flight of stairs and going on a light walk today.

What I am doing instead:

Organizing and reorganizing tomorrow's calendar, freaking about about the lack of breathing room between obligations from 6am-5pm, and mourning over the preparations that I should have made during Saturday and Sunday instead of healing. 

concerning the ineffectual techniques and person of my GI doctor

Last week -- strangely, just a few days before the big episode -- I had an appointment with my GI doc.  This was not a regular check-up, nor did he care to see how I was doing.  I made this appointment because for the last 6 months, he has not been able to find my medical records.  Yes, truly.

He says "they're here in the office somewhere, I know I didn't throw them out," Yes, I know I didn't throw them out.  This is an actual thing that he said to me.  For the moment, I withheld the threat of a HIPAA lawsuit.

The medically related subjects we touched on were these:

1) "So when was the last time you got a CBC/liver panel done?"

"Well, that was something I wanted to request since during the first 2 years that I was on Remicade, I had panels done once every 3 months and I haven't had one for over a year now [since I have been your patient]"

"Oh sure, yes let's have those done then." 

2) "My 3-part-sagas have been infrequent and I finally found an antispasmotic that works, after 10 years of trying things that did nothing"

"Oh that's great, what is it?"

"Marijuana."

"Oh..." He huffs a little and looks at the floor, disappointed. "Well have you tried everything else?   Bentyl?"

"Yes, you prescribed me Bentyl last year, it didn't do anything"

"Clidinium?"

"Yes."

"Hm."  With that, he was out of ideas and proceeded to ask me about pot.  A series of idiotic questions that made it abundantly clear that he had no idea how it is used medicinally.  "So how did you get it?  It had to be prescribed, right?  So you go to a doctor who examines you and gives you a card?  Do you smoke it?"

"Yes, it was prescribed.  I use a vaporizer, which only releases the medicinals of the leaves.  There is no burning, and no smoke."

"Can you... I mean, are you able to do things afterward?"

"If you mean, do I get stoned, no I do not.  I take one hit and that is sufficient to relieve my abdominal pain within 10 minutes."

"Huh.  Because you know I have a patient who uses marijuana and smokes every day, and does nothing with his life and lives in his mom's basement.  So..."  

"That is unfortunate, if only your patient had access to a psychotherapist who could help him work through Crohn's related depression and dependence.  But not to worry, I do not have an addictive personality and I have the motivation to avoid drug dependence.  I use it once or twice a week."

"Well, I guess whatever works." Let me emphasize, at this point, that this is an OD, not an MD.  An osteopathic physician whose schooling is specific to harmonizing the body, not just about which prescription drugs do what.  This is a man who should at least know what marijuana is and how it is used medicinally.  This is a man who should be open to non-pharmaceutical therapy, not excessively closed minded toward and ignorant about it.

3)  "So I'm trying this new anti-inflammatory diet and it seems to be going pretty smoothly.  I've been weening into it for a month now.  But still, I eat a banana and I'm constipated for 2 days."

At this, he laughs.  "Yeah, I have another Crohn's patient that that happens to."  That was the end of his response.  No commentary about how often I should be eating bananas, or other ways by which I might acquire potassium -- not that I need direction.  "So you're not eating any grains then?  No wheat, no rice -- well, except brown rice -- no oatmeal?"

"Well, oatmeal actually has anti-inflammatory properties," I corrected as nonchalantly as I possibly could.  How does this guy have a gastroenterology practice and not know anything about marijuana or diets?  How, I ask you.

"Well alright, let me order those tests and I'll give you a call when the results come in."  Really?  You have nothing to say about my dietary choices?  No recommendations based on my medication?

"What should I do about not feeling that great lately?  Lots of constipation, nausea and the big D?" I asked desperately trying to get any kind of medical advice out of him before he shuffled me out the door.

"Well, it's up to you.  Do you feel like you want to increase the dose?"

"Is that something you recommend based on my symptoms, or do you think they are just IBS and not related to inflammation?"

"Well, it's really your call on the Remicade.  You can increase or decrease it at your discretion."  Again, not remotely answering my question or giving any kind of medical advice.

This is the kind of medical treatment that student insurance covers.  God help me survive the next 4 years, or until H.K. gets rich enough that he can help me acquire real health coverage once Obamacare finally kicks in and I can no longer be denied for pre-existing.

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.

hi's and lo's

What is provoking this sudden flurry of posts??

Back on the anti-inflam diet today.  Feeling good.  Even rejected the primal urge to partake in free baked goods and coffee at a seminar.

[leftover] coconut flour biscuits courtesy of Comfy Tummy, cashew raisin carrot salad.  Dried ginger and cherries for dessert.

Eaten away by the hour, however, upon discovering this morning that I had made a mistake several months ago now that has been causing the problems in an experiment a colleague and I have been working on [on and off].  With each hour, it becomes more difficult to tolerate the mistake.  Minimally my fault as I was a complete noob thrown into a DIY cloning situation with almost no direction other than an end goal.  But months wasted nonetheless, and my own integrity disintegrating in the eyes of my colleague.

Funsies.  Evening deprecation.  Romanticizing about what a good night's sleep once felt like.  Feeling thrice my age.  Losing patience with my GI (elaboration to follow).

fasting on yom kippur

Today is Yom Kippur, the holiest day of the year for the Jewish people.  Every year on this day of atonement, I find myself mostly atoning for not fasting.

I'm not a religious person, so why the quandary?  Tradition.  And unity.

As I have alluded to in many a post, I am a history fanatic.  It's a nigh unhealthy obsession.  And with my particular strain of historical fanaticism comes a deep and bulging appreciation for, and need to be a part of, the strings that hold  a people and their origin together.

So I try.  Sort of.  I learn the stories, I dissect their legitimacy and find ways to base them in a reality ruled by physics.  I recognize and have great respect for the meaning of the holidays.  But I don't fast.

Our ancestors sacrificed and suffered to make the world a better place for us, and I am doing my part to make the world a better place for my potential progeny.  That, to me, is as equal a representation as any of my atonement.

Lastly, and probably most relevant, I get really messed up when I don't eat.  It necessitates being bedridden for the day (due to drugs and fatigue, etc.), which I cannot at present accommodate.  So, this Jewess will atone for her sins (one of which, involving primer design, was just discovered this morning -- how delightful) by fixing the problems she has caused, and by eating enough to support the calories necessary to do so.

Happy Yom Kippur!  Tzom Kal!  and, g'mar hatimah tovah!

health food addiction

Healthy food is like a drug.

When I get on a diet kick, and realize that I have actually made time to plan, shop for and prepare healthy meals, I like to stay on that kick.  Because when a day comes to interrupt my high where I cannot plan, shop for or prepare a creative, healthy and -- let's face it -- fun meal, I crash.

At the end of a long and taxing day -- never mind how productive or fulfilling -- I feel even more awful eating things because they are easily accessible (read: carbs) than I did before my diet kick.

 Curried tofu (bad) with celery,peas, avocado and tomatoes.

 Whole roasted cauliflower with thyme, basil olive oil sauce.

 Avocado alfredo with zucchini noodles and roasted fennel.

Almond butter cookies (no flour, good sugars, minimal egg).

Cooking healthy foods is vastly similar to reading a brilliant and dense book: it can be intimidating and take a good while to capture your enthusiasm, but once you get going you cannot stop reading for your life.  Two months ago, I finally got back the "time" and enthusiasm to work on this anti-inflammatory diet that I've been tip-toeing around for ages.  I have loved it.  I have loved the innovation and simplicity of most of the recipes I've discovered.  I have loved experimenting to make strictly SCD or Paleo recipes edible for myself (read: no dairy, no red meat, no peanuts, must have sushi).  And I have loved feeling good about what I'm putting in my body (irrespective of whether I have an attack afterward, which occasionally is the case -- consequences of transitioning away from that to which one's gut flora is accustomed).

But sometimes I can't make it happen.  Sometimes it is the middle of the week, and I have worked a 12 hr day and came home to a full sink (read: entire kitchen countertop) of dirty dishes, an empty fridge and a pile of clothes to alter/hem... and I just have no interest in making it to the grocery store.  And H.K. and I get takeout.

Takeout is inevitably carb loaded (pho), or sugar loaded (dressings/ candied nuts), and ordering food without dairy/red meat or carbs makes the meal completely not worth it.  It does not help that I forgot to make breakfast this morning and ate a free bagel at work today... and that that is all I ate until I got home and inhaled some leftover roasted fennel from last night.

So tonight, I'm crashing, exhausted, and craving healthy food.  Put it in my veins.

____

UPDATE:  I grazed through a fish wrap with grilled veggies and dates from our go-to "South African"restaurant.  Not as bad as could have been.

sweet victory

It should not take Blue Cross Blue Shield 6 months to figure out how to correctly bill a Remicade treatment.

It should not take over a year of my calling every representative of every department of Blue Cross Blue Shield to finally get to the one person who actually tells me the truth about how badly their company has fucked up my billing.

Blue Cross Blue Shield should not then be able to legally bill me retroactively for the amount of money they fuck-upedly did not charge me originally, after straight up lying to the tune of my having to only pay a $20 copay.

It should not take over a month for Blue Cross Blue Shield to process an E.O.B. for my Remicade treatment which I then have to call and have them fax to RemiStart.  I should not then have to make a separate call to Hoag Financial Services to have a Payment Report faxed to RemiStart because the E.O.B. says "chemotherapy", not "Remicade".

I should not have to have RemiStart's reimbursement card get denied because Hoag Financial's "terminal" isn't connected to RemiStart's "terminal".  I should not then be responsible for making sure that a "ticket" is submitted somewhere in debit card space so that that connection can be made.  I am the only patient at Hoag Memorial Hospital that has a reimbursement plan with RemiStart?  Really?

I should not have to do these things.  Especially not in the midst of a time-sensitive behavioral experiment and while the IBS component of my Crohn's is bringing me to my knees.  But I live in America.  So when that godforsaken reimbursement payment goes through after a year of exhausting, harrowing, brutal financial stress and anxiety... victory is sweet.

Invisible Illness Awareness Week: Lucky Ones

We are the lucky ones who are well enough to work and to follow our dreams in any measure.

During Invisible Illness Awareness Week, I am reminded again of how fortunate I am to be in graduate school, and to be able to do what I love and be [somewhat] content with my performance.

With no exception, I am inspired by everyone I meet or read who works so hard to best their invisible illness throughout the day, each and every day.  From the gentleman fighting MS who I met in the infusion clinic to fellow bloggers with crohn's, fibromyalgia, migraines or lupus to my best friend who owns her lyme disease.  These folks are my inspiration.  They feed my urge to work harder and take advantage of my "health", and they remind me that I am not alone in my confused and frustrated negotiations with my immune system.

NFL iPhone app

Deep down, I feel that the NFL iPhone app was made for those of us who have to spend second quarter in the restroom.

sunday nights

spent the entire weekend ignoring how blazingly overwhelmed i am, and how deeply it feels like i am failing everyone.

blast sunday nights.

grad school priorities #10

What I should be doing:

Working on my SfN poster... or analyzing behavior... or working on my grant-writing workshop presentation... or working on my journal club presentation...

What I'm doing instead:

Abating nausea.  Touché, CD. 

is it fall yet?

I'm effing tired.

Everyone seems to think that I'm effing tired because I work 60-70 hrs a week.  We've been through this, folks.  I work 60-70 hrs a week because I'm obsessed, not because scienceownsmysoulomgfml.  I gave my soul to Science freely.

I'm effing tired because it's effing hot outside and I bike every day.  I'm effing tired because I have Crohn's disease.  I'm effing tired because the most horrifying and consuming tragedy I have ever experienced has been looming over me for the last 6 months and threatens indefiniteness.  And I'm effing tired because my entire lab seems to think that I don't contribute beyond my own projects (even though I do most of the lab-wide organization and cleaning up after people), and that I have no idea what I'm talking about (even though I have more experience with most techniques than anyone else and am actually quite good at what I do, despite the Jack Sparrow facade).  Perhaps I need to be more outspoken about my menial daily achievements?..

So before you tell me that I look exhausted and need to take time off of work, please consider that my work is one of 2 things (the second being H.K.) that is keeping me from a serious mental and physical breakdown.  Plz.  Thx.  Much love.

On a less snarky note, I got a SfN sponsored travel award to go to the conference in October.  Yay!

grad school priorities #9

What I should be doing:

Slicing brain tissue.

What I'm doing instead:

 Watching Olympic soccer with my labmates.

grad school priorities #8

What I should be doing:

Reading my book and watching the olympics.

What I am doing instead:

Revising lab protocols and data sheets and watching the olympics.

Damn you, Dropbox... 

first grad student summer

I heard rumors.  People said, "take a real vacation before you start grad school, because you'll never have a summer again."  I took the counsel too lightly.  "I'll be fine," I assured them [myself] confidently, "I know how to avoid burn-out."  And the moment I realized that I had survived my first year of graduate school (by who knows what means), summer plans erupted.

I was going to go camping/hiking/state-hopping every weekend!!!  I was going to have energy during the summer -- oh yes.

Turns out, I've been working a lot of 10-12hr days 5-6 days a week, barely making an appearance at some wedding events and taking a whopping 2 days off with H.K. to enjoy nature, lakeside, and isolate ourselves (for the most part) from our work.

Proof!

Almost none of my "summer plans" have come to fruition.  I haven't visited loved ones in Colorado, I haven't yet been far enough north to see one of the greatest people on earth, and my shot at seeing my family this summer weighs on their being able to come down here.  Also, no camping has been achieved.  Much to accomplish before late September...

When people said "you'll never had a real vacation again"...  I suppose I didn't understand that that meant "you'll hardly ever have a free weekend again".  Semantics.

But as long as other people can forgive me, it's okay.  Because I love the small peppering of time I have with H.K., I love my new porch garden, I love being able to work through my large stack of leisure reading, and I love drowning in science.

why i am a workaholic/anti-social

I have been having more frequent bouts of depression recently.  It hits me at night, after a 11-hour work day when my eyes are inflamed (see "blepharitis" posts) and all I want to do is be with H.K. and sink into the couch/bed.  It is then that my mind slows down and I realize how many people I've blown off lately and what a shitty friend I have been and how in the world I thought I could meet all the social demands I had set for myself.

When this happened two nights ago, I unloaded in "drunk-dial" fashion on my dearest friend, Liz.  Master and Ninja of all things Life -- particularly mindfulness and self-acceptance in terms of chronic illness -- Liz helped me to find some perspective.

For more perspective, see this article.  Only after reading it have I been able to piece together my position on the social bailing that has made me so upset lately.

I have had a very difficult time explaining, not only to other people but to myself, why I have the energy to work 60-70 hours a week but not to socialize.  It comes down to two things: 1) I am a troglodyte, and 2) I absolutely love my work and am bewildered that I am actually healthy enough right now to do it.  The latter of these, as you may have guessed, is the more pertinent.

Having had Crohn's disease for ~14 years now, I have experienced many lows and highs.  During the lowest lows, I am bed-ridden, emaciated, and in consistent immense pain.  But during the highs... there is freedom.  There are windows of time when I can do whatever I want to with the energy that I do have.  And I chose to do science, because I love it almost as much as I love H.K., and I am compulsively -- sometimes obsessively -- driven by it.  It is much harder to find windows of health that allow me to embrace research than it is to find the stamina for being with people I love.  It may seem backwards, and/or fucked up, but I take advantage of my rare working windows at the expense of socializing.  It has nothing to do with my love for people.  It is simply a reflection of my passion taking precedence where/when it can.

The above article explains this conflict well.  You do what you can, when you can.  Sometimes your body bails on you and plans change.  Sometimes you overestimate what you will be able to accomplish and things further down on the list get put off or dropped.

Just because I am working does not mean I am healthy.  It means that I am healthy enough to do some things, but not everything.

year one recovery

Around the time that my last final exam was submitted for Core, I slept until 3pm.  I got out of bed at 3pm for the sole purpose of seeing Prometheus.  I went back to sleep immediately afterward.

Since that day -- roughly 2 weeks ago now -- unless I am in lab or otherwise actively doing something, I am constantly exhausted.  The kind of exhausted where I opt to remain where I am sitting/laying instead of obtaining food.  Since almost nothing (sans incredible pain or nausea) has the power to make me abstain from food, this state strikes me as noteworthy.

In the same period, I have now had 2 bouts of extraordinarily painful attacks.  The kind where the pain can't be contained by the gut alone and invites the spine to orchestrate the party in nearly paralyzing waves.

It occurs to me that this is yet another one of those instances where stress has suppressed my immune system (the other part of the immune system that Remicade does not touch) so intensely for so long that immediately upon release from said stress, the body goes wild exercising all the things it could not do during suppression. Namely, sleep and flare.

Thank you, Core.  Damn you, and may we never meet again.

grad school priorities #7

What I should be doing:

Writing my final take-home exam.

What I am doing instead:

Anything and everything else that I can possibly think of. 

grad school priorities #6

What I should be doing:

Absolutely not a damn thing.  Hiking, maybe?  Cleaning my house?... the sky is the limit!

What I'm actually doing:

Freaking out because I'm not in lab or studying.

grad school priorities #5

What I should be doing:

Studying for the midterm that may decide whether or not I get put on academic probation.

What I'm doing instead:

Way too many surgeries and perfusions.  All week long.  Thanks to my PI for that last-minute timeline change. 

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...

carrots

After 13 years of not being able to eat raw carrots without inflaming my lips and throat to the point of speaking like a dying frog for six hours,  I can eat raw carrots again.  Not without a hummus or tea chaperone, mind you, but made no less random or extraordinary by that.

It is very important to note here that before Crohn's, carrots were my most favorite food.  Cheese weighing in at a close second.

This.  Is.  Baller.

grad school priorities #4

What I should be doing:

Refining my lecture on scientific writing for tomorrow morning.

What I am doing instead:

Drinking wine and eating sushi, because the Week 1 of 5 Weeks of Hell will not give me a break even in my dreams.  Also because I rocked the pants off of my departmental presentation today.

grad school priorities #3

What I should be doing today:

Practicing my departmental presentation.

What I'm doing instead:

Shopping for grown-up clothes to wear for my presentation, and running Western Blots.

grad school priorities #2

72 hours to midterm: anxiety

24 hours to midterm: depression

10 hours to midterm: apathy

grad school priorities #1

What I should have done before class this morning:

Read papers for discussion so as not to look a fool.

What I did this morning instead:

Realigned my bike wheel, Sharpied over the spots on my sweater that got bleached in lab, sewed up a hole in my sock.

Adventures in the Cancer Infusion Center: Real Live Support Group

Many of us are fortunate enough to have loved ones of all types who recognize our limitations and support our ventures in overcoming them.  H.K. is one such phenomenal human being.  But in the end, there is nothing like talking to the MS patient in the infusion chair beside you for two hours; he with his Tysabri and you with your Remicade.

Mr. Jones was a happily married father of two kids in college.  He was, without question, the most talkative person I have ever met in the infusion center -- and although creepily Michael Keaton-looking, the youngest besides myself.

He was diagnosed with MS when his children were 9 and 11 years old, and took advantage of every feasible route to being able to keep his job and contribute to supporting his young family.  Last year, with his kids finally moved out of the house, Mr. Jones had to retire (there is no way the guy was over 45) due to the cognitive irregularities and physical strain he suffered from MS-induced lesions.  He started Tysabri treatment, and I met him today during his 14th infusion.

Interestingly, Mr. Jones brought me into a conversation with his nurse about recent numbness in his limbs (a side effect of Tysabri).  He was elated to inform me that he has never fallen, because when he notices he is walking funny, wherever he is, he sits.

I was regaled with stories of other MS patients in his support group who are confined to wheel chairs and whose spouses left them because they could not take the demand.  Who fell out of their wheel chairs trying to get out of their houses because their adult sons (yes, plural) could not build them a plywood ramp... or help them cross the threshold, evidently.  I was brought to the verge of tears several times.

He was visibly perplexed at my being in graduate school.  "Dude, aren't you totally exhausted all the time?" he entreated, "how to you think clearly enough?"  We addressed each other as "dude", which I thoroughly enjoyed.

"Well -- hah -- I am, and I don't really.  Especially during exams," was my reply.  And it could not be more true.

Being surrounded by other graduate students is amazing in many ways, one of which is that I feel completely normal in their company.  The caveat, of course, is that I begin to wonder why I am not acting so normal.  Why am I not up for a study group until 2am?  Why am I not up for going out to dinner on a Wednesday night?  I tell them that I need to spend time with H.K., which could not be more true.  But I don't tell them that I am impossibly wiped out from the day and I can't think of anything but eating and sleeping.  Omitting the latter excuse from my responses makes me forget that I'm not just being the troglodyte homebody out of lack of interest... I'm being a troglodyte homebody because I'm not healthy.

This is not to say that I'm not doing incredibly well.  Sans the blepharitis, nausea and exhaustion I am healthier than I have been since I was 10 years old.  Mr. Jones reminded me that I am legit.  He also reminded me how fortunate I am to be doing so well on Remicade.  And he reminded me how phenomenal is my spouse.  I couldn't feel more honored to have met him.  Thank you, Mr. Jones.

Second term wraps up

I have officially passed my second term of graduate school.  "Unscathed" and "successfully" are not the right adjectives, but I feel like a more evolved scientist no matter what the politics of graduate school think of me.  To celebrate, H.K. and I went on a small hike this weekend.

Yes, that thar is the ocean.

That is not to say that I haven't done well.  I have.

Yours truly is -- as of several weeks ago, actually -- part of a new lab home.  Where did I end up, you ask out of unbearable curiosity?  Why, in the bustling and exciting new lab of Dr. StemCell!  I have a tremendous project manipulating cell therapy in several PD models and cannot wait to imbue myself full-time this summer.

The Crohn's baby has been oddly tolerant of the inordinate levels of stress that this term has induced.  Only three minor flares the whole term.  The rest of my body, I'm afraid, has not been so tolerant.  It seems that I have developed anemia again, and consequently have been demonstrating vasovagal responses all too frequently for anyone's liking.

Apparently I have joined the ranks of the chronically anxious (although one would think that anxiety would be accompanied by more frequent flares, hence, "oddly tolerant").  My awesome university physician has a philosophy that there are two kinds of graduate students: the kind that are on SSRI's and the kind that should be.  She also recommends the greens, which I can't say that I'm opposed to.

In other fascinating news, my constitutively dry eyes which were "diagnosed" roughly a year ago have advanced into a new stage of dysfunction.  Welcome, Blepharitis, to my platoon of Misfit Side-Effects!  Since the psoriasis, exoskeleton nose and bladder infections calmed down I've been aching for a new challenge.  Srsly though, thank god for polyquaternium eye drops.

And -- AND -- my new anti-nausea drug (Zofran) does not knock me out cold.  Which means that I can actually take it when needed.  Score.

Things I learned in graduate school, Part II

1.  Do not forget to eat food.

2.  Do not forget to eat food and then half a cup of coffee and a handful of Pringles for lunch.

3.  Do not forget to eat food, have coffee for lunch, and then take a full dose of antispasmotic.

4.  Do not forget to eat food, have coffee for lunch, take a full dose of anti-spasmotic and then nearly fall out of your chair from being high while your PI is explaining a complicated procedure to you which you will be expected to perform for the first time on your own the following day.

Raga Conductance

Remember the graphic projection from last week, folks?  This most recent set of 24 hr bins has not been good times all around either.

My most recent week.  Plotted as the slope of Raga current over Raga driving force.

The week began with residual driving force (V) from the one before -- roughly less than 0 enthusiasms.  As the week continued and midterms were confronted one after the other, driving force increased steadily as was demanded by scheduled events through the continued failure of lab projects, the continued battle with insurance for coverage, the increasingly aching body and cognitive blips (which are new) and the return of a particular midterm grade.  Driving force, still not in positive range, saw Raga current (I) approach 0 and Raga channels all but give up.

Then, on Friday evening, a peep of hope.  I learned that my particular midterm grade was actually quite reasonable when weighted through the class as a whole.  My trouble-shooting efforts in lab were rewarded with a high-yield experimental result.  And my insurance broker called to say that the appropriate paperwork was being transferred and that it should all resolve in the next few weeks.

And with that, Raga reversal potential (ERaga) was met, and current slowly began to creep upward into functional levels.  With Raga driving force now increasing due to internal and not external factors, it's off to mini-golf and amazing food that is bad for me in honor of H.K.'s birthday, which was so cruelly ignored last week due to recruitment and midterm prep.

I could survive this, yet.

Exponential decay

We are learning about neuron equivalent circuits in school.  In honor of said topic, I present my own example of exponential decay.

~

Last week was the most idyllic example of an exponential decay in condition that I have ever experienced.  Laughably so.  And thus, I share.

Monday (100 enthusiasms): Treated to a fancy dinner with a group of excellent people.  Up all night with epically bloody Throughput despite only eating beets and salmon.

Tuesday (10 ens): Receive denial of insurance coverage for the Remicade that I have been getting under new student insurance since October.  They just now decided it was "not medically necessary".  Morning spent on the phone with the GI, the infusion center and the insurance broker instead of doing science.  Experiment set back by two full days because I am a noob blundering about a new lab with no one to tell me to parafilm my culture dishes so they don't dehydrate.  Still losing irregular amounts of blood.

Wednesday (1 ens): Journal club blitz presentation for a particularly terrifying professor*.  Afternoon spent haggling pharmacy over whether or not my prescription renewals have been translated instead of doing science.  Fell, despite my greatest efforts, into behind-the-scenes mediation of a high school drama-esque conflict between two classmates.  Still losing irregular amounts of blood.

Thursday (0.1 ens): H.K.'s birthday, for which I could muster only a card.  Intense nausea all day long.  Managed to do some science.  Still trying to encourage adult resolution of a childish conflict.  TA'd a lab.  By late afternoon, running only on the fumes of media broth and some desperate hope of still being able to impress my PI this rotation.  Continuing to lose irregular amounts of blood.

Friday (0.01 ens): Wake up with an un-concealable budding stress-induced cold sore.  Recruitment day!  After an extra-painful extra-long 4 hours of class (instead of the normal 3), the afternoon was spent escorting/interviewing/socializing with fresh meat instead of doing science.  By the evening, cold sore noticeable, muscles aching from lack of oxygen, I couldn't even bike home.  H.K. had to pick me up.  I was in bed by 8pm, falling asleep on my study materials.  Dreamed of my two midterms coming up on Monday and Wednesday.



*Of my classmates, I was the only presenter that she said "good job" to, which provided a fleeting blip of positivity in my week.

Perspective

I just watched the documentary "Under Our Skin", which is about Lyme disease and the disgusting politics surrounding the insurance companies and medical boards (surprise) that prevent it from being properly treated.  One of my most favorite people in the universe has Lyme, and her perseverance has always been inspirational to me.  It's an important message about how biomedical research is just as susceptible to being stunted by corruption as any other major enterprise.

Consequently, watching these types of documentaries is incredibly depressing to me.  Though there is always a ray of hope at the end, I can't help but sink into guilt.  I am not earning my health, there are people so much worse off than I am that I must be faking it, I should be in toxicology or immunology or infectious disease instead of neuroscience, etc, etc...

H.K. is kind enough to remind me of what pitiful condition I am in without the right medication -- how dysfunctional I was before Remicade started to work a year and a half ago, the concern for what will happen when I can't take Remicade anymore, and that even though the pain is now benign and infrequent I have acquired all kinds of side effects.  One of them is being in grad school.  For which, though I complain (because that's where camaraderie comes from), I am so incredibly grateful...

Bring it on, 2012.