Friday, January 29, 2010

Food of the Day: Onion

It has been far too long since I wrote about food...

Onions are supposed to be on the list of a Crohnie's worst nightmares because of their acidity and propensity to cause gas.

I have two secrets.  Although you definitely to not want onions anywhere near your gut during a flare, when the slightest irritation can cause a major downfall...

1)  Onions are infamous for their anti-inflammatory properties.  Namely, [Lanzotti 2006].  But of particular interest to me as a Crohnie was a study by Merhi et al of Paris and Tours, France, indicating that some of the thiosulfinates in onion (and garlic) inhibit the production of TNF-alpha.  Albeit this study used leukemia cell lines (U937, established from a diffuse lymphoma; NB4, isolated from a promyelotic leukemia) to implicate foods high in thiosulfinates as cancer fighters.  However, they happened to also suggest that thiosulfinates might be directly inhibiting TNF-alpha.  The U937 and NB4 cell lines were developed for their proliferative properties, and this being a characteristic of the immune system it is not inconceivable that a similar mechanism might be working in the intestinal cells overexpressing TNF-alpha in Crohnies.  Maybe I should go into gastroenterology research instead of neuroscience... I'm already proposing breakthrough studies.

In 1990, Walter Dorsch of the University of Munich claimed that another thiosulfinate (diphenylthiosulfinate) displayed anti-inflammatory activity greater than that of prednisolone (yes, the active metabolite of the infamous Prednisone).  Although Dorsch's group was also using leukocytes, the implication for general inflammatory activity is clear.

2) If you cook the onion, the acid content goes down considerably... 

During this latest escapade wherein H.B. has switched his career to film making and is now diligently and scrupulously working on his first grand production, his brother, h.b. (hungry brother) is inhabiting our guest/lego room... and kitchen.  And yes, I am talking about the next generation of Coen Brothers.

h.b. is a fine chef, and has graced us with several superb meals thus far in his stay, not the least of which being Onion Soup.  He bought 8 giant onions -- never before had I seen so many in a kitchen at once -- and sauteed/wilted them down to a meager pile of oniony goodness.  It is thoroughly embarrassing to admit it, but I was like a small child watching cotton candy being made.

Two quarts of chicken broth and a generous splash of red wine later, we were pouring this most amazing olfactory treat over toasted french rolls and Gruyere (my "Gruyere" was, of course, grated soy cheese).

I survived this meal with zero ramifications.  Zero.  Finally, one of these drugs is doing something right.

Can anyone tell that I've been reading a lot of Alison Weir lately?

Wednesday, January 27, 2010

my favorite, weirdest symptoms

1)  my teeth are so temperature sensitive that I can't eat anything straight out of the fridge... all must set until lukewarm, be nuked or be grilled.

2)  without fail, and regardless of whether or not I'm wearing wool (which I never am), I get shocked by door handles.  I swear this only started happening two weeks after I started Prednisone (way back at the 40mg dose).  I wonder if it's possible to incur lasting nervous system damage from continuous and prolonged microshock.

Saturday, January 23, 2010

the masochist

"Please don't be cynical.  I hate cynicism -- it's my least favorite quality and it doesn't lead anywhere.  Nobody in life gets exactly what they thought they were going to get, but if you work really hard and you're kind, amazing things will happen.  I'm telling you, amazing things will happen." -- CoCo is not a revolutionary, but he made a point that I needed to hear.

I never watched the Tonight Show, I never appreciated the humor of Jay Leno or David Letterman, and only on the rarest of occasions did I watch Conan O'Brien.  But I watched his last show this morning because, well, I'm moody.  Hulu wins over other Saturday morning  activities when I'm moody.

Fairly fitting then, I suppose, to be slapped in the face by a guy who I didn't respect until said slap.   I'm actually a little embarrassed to admit that he made me feel significantly better.  The way I feel when I'm not mopey.  Don't be cynical.  I didn't used to be cynical.  Skeptical, yes.  Cynical, certainly not.  Not during these last few years. However, it is the end of January and the rest of my life depends on what happens -- or, is supposed to happen -- over the next two weeks.  And I am mortified.

I'm not anticipating utter rejection so much as acceptance.  The fear of being welcomed into my dream education and not being able to take advantage of it because I'm doomed to linger in this purgatorial state of pseudo-illness is my ultimate cynicism.  It's not unrealistic, I don't think.  It is, however, the force against which I started keeping this blog in the first place.  It can be done... maybe.

If my GI continues to revert me to steroids while ignoring the other drugs that my liver clearly feels I should be off of by now, I just don't see enough progress being made to sustain me through that venture.

The second taper didn't work.  Round One: 10 and 5mg/d weanings = failed; Round Two: back up to 10mg/d, then 5 and 1mg/d weanings = failed; Round Three: back up to 10mg/d again, then 1 and 1/2mg/d weanings.  My third steroid treatment in six months?  Are you serious?  Very.

Maybe if I hadn't worked 50 hours last week.  Maybe if I had taken naps when I got home instead of hoping that staying awake would tire me out by 9pm.  Maybe if I got some more exercise instead of moping around the house in the evenings.

But the adrenaline I get from my work is the only energy I've got.  Naps have never had any reviving effect for me, and I have been trying to walk the few blocks to the bus when I'm awake enough to catch it, and doing a lot of stair climbing at work.  So at least I'm being moderately proactive.  Right?  Lighten up -- don't be so cynical.

Friday, January 15, 2010

Remicade Round V, and other stories

1) Since I have been doing well without Benadryl or Tylenol, I went to my fifth infusion alone.  I discovered two things: a]  there is orange juice if you ask for it, and b]  four hours is far beyond the tolerable duration of headphones, and I will be bringing a book/laptop next time.

2) The step backward into more Prednisone in attempt to avoid severe fatigue and nausea in the second taper is proving questionable.  Just as my moon face was fading away, its return was stimulated immediately.  The fatigue disappeared for a week -- likely due to the initial P.M. -- and now I am exhausted again although not to such an extreme degree.  Although I have cut my hair it continues to fall by multiple handfuls each day (thank you mom and dad, for affording me such thick locks to begin with that this hasn't yet been devastating).  And lastly, the chronic nausea and cramps in my legs have returned.  Killer week, for sure, but all this aside, life is good.

3) And the cold sweats -- the cold sweats are awesome.

4) Rejection letters and interview invitations begin arriving this week, and as such, panic mode has settled into the forefront of my conscious.  Let the trauma begin!

Monday, January 11, 2010

happy new yar part IV

Comfortably back on Prednisone for the last six days, I was able to appreciate this weekend's escapades.  My body has not been this thoroughly sore since returning to gymnastics after a foot injury ten years ago.  We're talking about soreness on the level of annihilating one's ability to roll over in bed (but, oddly, not one's ability to spend another six hours back on the snowboard the following day). 

It feels amazing.  It feels like I'm alive in a very non-crippled way.

The thing about teaching graduate students is that while lengthening my days and draining my brain, it's also energizing in a very unique way.  It's what I got from teaching gymnastics.  It's what I get from learning new things.  It's what I got from the mountain this weekend, and what expanded today at work.

I haven't decided whether the repossession of my ability to wake up in the morning and do things is due to reintroduction of Prednisone or Placebo, but I'm content to feel like myself again.  Another three weeks and I'll know why.

Friday, January 8, 2010

happy new year part III

The Goodness just keeps rolling in.  A "surprise" weekend on Mt. Hood (in quotations because I technically knew about the adventure several weeks ago, but proceeded to forget [twice] to put it on my calendar [absurd] and, consequently, forgot about it until the night before, at which time H.B. and I had to go on a frantic night trip to several clothing retailers to hunt for affordable snow clothes which neither of us possess; hopefully I wont spend the entire weekend feeling guilty for having cheated my graduate student out of a full day of practice surgeries).

Today was a full one of learning how to snowboard (which apparently necessitated the bruising of my tail bone and a backward face plant [affectionately known as a skull plant]), swimming in an outdoor heated pool and hot tub in 30 degree weather and having a surprisingly benign lentil patty with mustard and arugula. Sore and satisfied, I'm sitting in a fire-toasted living room with my brother, his best friend and H.B. who are scattered across floor and lounge chairs playing Super Smash Brothers on the LCD screen hovering above the flames, and my father on the couch to my right reading the far-over-rated-but-entertaining book that was displayed on the Mt. Hood In Pictures hardcover adorned the coffee table (The Brief and Wonderous Life of Oscar Wao, by Junot Diaz).

I am content to soak up this warmth (and wet cold) for two more days.  This is the perfect New Year's Treat.

Wednesday, January 6, 2010

happy new year part II

There are two reasons I stay with my current GI:
1) he is the supposed "best", and
2) when he actually has time to meet or speak with me (as opposed to sending messages through his sweet, "bless-your-heart", but less privy nurses), the conversation is valuable if only in that he agrees with my speculations enough to write me prescripts.
He called me himself last night -- likely because it was late and the nurses had already gone home -- and together we re-hashed the mish mosh of notes from his nurses and came to some unpleasant but necessary conclusions:
1) the fatigue and chronic nausea are probably due to Prednisone withdrawal, even though I've never experienced them in the past.  Therefore, back on Prednisone I go, ready and enthused for re-enhanced chipmunk cheeks and P.M. (which is actually highly welcome considering the sluggish through-put I've had at work lately)!!  A week of 10mg/d, a week of 5mg/d... a week of 4 mg/d... a week of 3mg/d... etc.  I'm so thrilled.
2) nausea is never a poignant sign of anything in particular, is just comes along with whatever, so we'll hope it subsides with the Prednisone, and if it persists after this second taper we'll "reach into his bag of other tricks."
3)  the folks at the infusion center with whom I scheduled my next few rounds of Remicade are apparently not in charge of the 6-8 week rule, I am.  If I'm not feeling well, it's every 6 weeks, and they do not get to tell me otherwise.  I like when my doctor gives me power over other medical staff.
Any type of moving forward is welcome, for I need to teach surgeries tomorrow and must be, well, functional. 

The New Year has taken a more pleasant turn since the dreadful whining of last week's post.  Thanks, in no small part to H.B..  For whatever reason, as draining as it is, teaching brings out a kind of aplomb that allows me to breathe through the melancholy pudding that is chronic fatigue -- which, for the record, should really be called Chronic Deadweight Syndrome.  Tonight, my first social excursion of the year (and in several months, excluding my parents)!

Saturday, January 2, 2010

happy new year

must i welcome in the new year with depression?  it seems it must be so.  for the two weeks i have been off prednisone, i have been more fatigued than ever before in my life.  at first i just had trouble crawling out of bed for work by 6am... then 8am... and now 10am, with the exceptions of thursday morning on which i awoke at 3am to begin the day's work having "slept" on two chairs in the lab the night before (my personal regard to 4 inches of snow), and friday which i spent sunken heavily in my bed until 4pm.

and i'm loving the now visibly thinned and brittle locks.

when you experience fatigue this severe following steroid taper, it is recommended that you notify your physician.  this particular symptom is usually a sign that your adrenals are not responding to the lack of exogenous hormone control and are failing to return to their normal modes of corticosteroid production.  kind of a problem.

why have i waited over two weeks to notify my gi?  1) see previous posts ranting exclusively about the incompetence and disappointing failure of my medical team. 2) in the quixotic and naive hope that my body would catch up eventually on its own.

the upcoming weeks, which until recently i looked forward to with great anticipation and preemptive enthusiasm, may be my undoing.  with my boss on medical leave, i am completely in charge of the progress of my own projects and the training/project management of our rotating graduate student.

it is more than five months now.  this is the kind of disability i can't afford to yield to if i am to ever survive graduate school.

meanwhile, i have no idea how or why h.b. is still putting up with all this crap.

i hope to denounce the demeanor of this post in the next week or so.