Sunday, September 30, 2012

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?"
"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"
"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.

Saturday, September 29, 2012

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.

Wednesday, September 26, 2012

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!

Tuesday, September 25, 2012

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.

Tuesday, September 18, 2012

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.

Thursday, September 13, 2012

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, September 9, 2012

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.