Tuesday, December 22, 2009

hitting the wall

After 4 months of adapting to the invigorating and infuriating perks of Prednisone Mania (P.M.), my first weeks without Prednisone are proving to be severely fatigued, and I'm losing my hair in thick handfuls each day.   I did alright through the taper; mild vertigo and a joint ache here and there, but generally well progressed.  Now that I'm completely off, I've hit a wall.  I've slept in until 930-10am over weekends and struggled more than I ever have to get up in the morning for work by 7am.  Today, I finally gave in and called in sick to work in favor of sleeping in until 11am.  If it seems to you that I shouldn't be worrying about needing this kind of rest, know that I worked heroic 8-12 hr shifts last year that ran anywhere from 4am to 10pm, averaging 6am clock-ins.  So I'm disgruntled with this interruption to my upbeat morning lifestyle.  I'm also back to being too nauseous in the mornings to eat breakfast.

Fatigue is a common symptom of Prednisone withdrawal, as is hair loss (Murphy et al 2009; Miozzari & Ambuhl 2004).  So I guess I'll deal. 

On the bright side, I saw a dietitian today.  Unfortunately, dietitians/nutritionists within hospital systems tend to be... less knowledgeable than those of us who come in with specific questions might hope.  I mentioned my concerns for balancing
1) soy products (as I don't eat dairy and need my fermented foods, but have been warned about over-consumption of soy and inflammation),
2) grains (high residue, high carb, my interest in leaning toward vegetables to substitute most grains/breads, etc.), and
3) sugars (even when I was diagnosed twelve years ago, one of the first things I was told was that I ate a lot of processed/complex sugars which probably exacerbated my gastrointestinal sensitivity among other things, and to stay away)
Her response to my inquiry regarding all of these things was, "oh I wouldn't worry about that."  I kid you not.  I attempted to coax a more detailed explanation out of her, as I was eager for her opinion of what I had gleaned from my own research.  Nada.  She did not even allude to the Elimination, SC/Paleolithic, Mediterranean or any IBS-friendly diet.  I'm so glad that by some glitch in the system there was no copay for this appointment.  I understand that most nutritionists see patients who are new to approaching their medical care through a dietary component, and that many people just need to be told not to consume more than 200 daily grams of fat or drink more water or that they're allergic to some foods.  It's not her fault she couldnt tell me exactly what I wanted to hear.  It is her fault that she was totally unaware of how to answer any of the questions I asked -- I posed them to be specifically familiar to people in the nutrition profession (I have a friend who in nutrition whose first reaction to hearing the summary of the last four months was to ask if I had tried the Elimination diet and what it told me if anything).  Clearly, if I want a more straight-forward conglomeration of all the research I've been doing, I need to see a naturopathic nutritionist, or someone straight out of college who still knows how important it is to understand how nutrition and disease interact.

On the actual bright side, I made apple/fennel/butternut squash soup with supper tonight.  Pureed veggies are my saving grace.  H.B. liked it!  Yayer!

Monday, December 14, 2009

Chanukah Miracles

This year marks H.B.'s and my first holiday season together (get all the cooing out of your system now).  Chanukah is not a high holiday, and were I a good Jew, I would not be so excited about it.  However, I am a semi-Semite, a historical Jew, and I look forward to the opportunity to celebrate an event in geopolitical history.

Roughly 2300 years ago, the Graecian Alexander the Great conquered Judea.  At the end of his reign, his kingdom split into the tension-riddled Seleucid and Ptolemaic kingdoms, between which Judea was caught.  While the two Greek factions fought for political control, the Jews successfully turned Jerusalem into a recognized city while maintaining their Temple and practices in exchange for paying extraordinary taxes.  For a hundred years, taxes paid for peace until Seleucid King Antiochus entered the stage and attacked the Ptolemies.  Antiochus lost and was presumed dead, which invited his crown to be lobbied for, and a former High Priest began this revolution in Jerusalem.  Furious, Antiochus carried out a slaughter of Jewish people, declared martial law and decreed many Jewish practices capital crimes.  Desecration of the Temple ensued.  Judah Hasmonean and his followers revolted and successfully overwhelmed two of Antiochus' armies via guerilla warfare.

A year after the defeat, the chanukah of the rebuilt Temple -- chanukah being the Hebrew word for "dedication" -- was declared by Judah to last for eight days as a reminder of Sukkot, which also lasts eight days.  But things were not all sunshine and happiness in Judea; civil war lasted for twenty years following the defeat of the Seleucids until the Hasmoneans won and regained governing power.  And although there was warring in Judea, the Seleucid Empire was collapsing under the budding Roman and Parthian Empires who joined forces with the newly recognized state of Israel... and then exploited and retracted its independence as Octavian sought to out-do Caesar's expansion of the Roman Empire. 

Although the Hasmonean family governed for nearly a century, there was severe tension between them and the sages.  The myth goes that when the Talmud was finally written seven hundred years later, the story of the single day's worth of oil burning for eight days was the result of the sages not wishing to credit the Hasmonean family, and Chaunkah was regarded in somewhat of a tainted light. (The Book of Jewish Knowledge: 613 Basic Facts About Judaism).

But enough history -- onward to this year's Chanukah miracles!

1.  I am officially off Prednisone and am beginning to shed (very, very slowly) its various layers.

2.  A week after being denied by the two urologists in Oregon who my insurance covers, the symptoms of my mysterious infection-which-was-not-actually-an-infection-of-any-kind attenuated and are now almost non-existent.

3.  I have only woken up one or two times a night for the past several nights now.

4.  H.B. and I did some serious cooking on Night 1, which yielded almost zero Crohn's pain.


5.  My parents gave us a menorah which dwarfs my baby one from college in size and effulgence.

6.  We decided, this being the season for giving, and since our first anniversary is probably going to be amalgamated with my birthday and New Years, to each give four small presents to the other.  The miracle, here, is that we can both afford to give a few nice things not only to each other but to family.  Sorry, friends; a heartfelt letter of undying love must suffice.

7.  This has been a particularly challenging year for too many of the people I treasure.  Career stifling unemployment, seemingly insurmountable isolation, health obstacles without healthcare and the deaths of loved ones have played all too frequent and dominating parts in the lives of those who have met them with courage, passion and optimism.  One thing just seems to rear its ugly head right on the tail of another.  This year continues to be a very fortunate one for me, which has allowed me to continue to support the people I care about in whatever capacity is appropriate.  I am thankful to have not lost any of the people I hold most tightly.  My having not been touched by misfortune this year, and instead being flooded with opportunity and overwhelming happiness, is not really a Chanukah miracle so much as the universe being somehow content with my behavior... but I'll acknowledge it on Chanukah, anyway.

8.  The Eighth Miracle of my 2009 Chanukah is Aaron Zelinsky, and his article in the Huffington Post comparing Judah the Macabee to Barack Obama.  Yayer.

Chanukah sameach!