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!

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!

Remicade Round IV

Why Round IV was grand:

1.  They started me on a fancy new protocol last night for the super cool patients who have gone three infusions with no "problems".  Instead of coming in every 15 minutes to increase my rate, they're starting me off at full throttle and letting me run the 2.5 hours.  Apparently, this makes almost no difference to me in terms of time consumption, but saves the nurses the hassle of coming into my room every 15 minutes.  I am an awesome patient.

2.  No Benadryl or Tylenol.  This is also the first time I've appeared for my appointment without being high on painkillers or in raging pain.  Awesome.  Next time I'll be able to drive myself and spare H.B. the wasted four hours of his life (which he insists he does not consider as such, but who wants to spend Saturday evening sitting in a hospital bed entertaining their girlfriend?).

3.  Seinfeld was on for a bit.

4.  There was leftover stuffing for supper when we got home.

this impotence will not stand, man

I don't think it's that doctors are lacking in diagnostic intelligence, I think it's that they're lacking in communication skills.  No doubt they have reasons for taking certain steps before others (i.e. putting me on an elimination series of antibiotics and requesting five negative urinalyses and letting me rot for over two weeks before sending me to a urologist).  They are, however, TERRIBLE at explaining why.  Why they are unconcerned about the nervous spasms accompanying my loss of bladder control.  Why they have not gotten culture results back to me after five days.  Why they are not recommending me to a urologist after antibiotics, AZO and various other over-the-counter UTI treatments have done nothing (or exacerbated the symptoms).

Thanks to Moon Face, I was inspired to do some more research into interstitial cystitis, about which I asked the Dr during both my urgent care visits, and which they both brushed off like it was an impossibility (which I allowed because I was all but delirious on both occasions).  What they should have told me was that it was important to rule out infection because interstitial cystitis has so few direct markers that elimination of UTI by urinalysis and antibiotic regimens is part of diagnosing IC.  They also should have told me that if symptoms persisted despite the antibiotics, to tell them so that they could refer me to a urologist.  Additionally, they should have told me that since the first portion of my cultures were also negative, it suggests that -- in agreement with my urinalyses and lack of antibiotic response --  I may actually not have an infection of any kind after all.  Doctors, I have noticed, depending on their specialty, have very limited next-step projection skills.

There is a great deal of overlap between occurrence of IC and IBS which gives me hope that my GI will bring IC up as a possibility when he responds to my questions on Monday.  However, being a GI he may decide to attribute what's been going on entirely to Remicade or PPR (because that is what I suggested to his nurse last week).

The short time that this has been going on (two+ weeks) relative to the typical time span that it takes IC to be correctly diagnosed (weeks to months) suggests that this still may be neither infection nor IC, but I would appreciate medical input from any of the three Drs who are now involved in this diagnosis.  Really, any communication would be helpful, guys.  Responding to last Monday's calls would be a super start (yes, I have taken into account that Drs deserve a Thanksgiving break, too).

Epic Thanksgiving, 2009

Perfect.

I could not have asked for a more wonderful day.  Finally fell asleep around midnight, and then sporadically woke up a few times because Doxy seems to prefer to work -- or give the illusion of working -- during daylight hours only.  Felt relief around 7am and laid in bed until 9 soaking up the comfort.

Having baked two different pumpkin pies last night between H.B. and myself, and an experimental cranberry tart bar dessert, there was no work to be done today before heading over to my family's house around 3pm.  So we were lazy.  And I did some Chanukkah/Christmas/Birthday gift brainstorming.  Serious business.

Upon arriving at The House, there was the soup course followed by one of the most enjoyable board game conventions of my family's history.  The main meal followed, and was the single most rewarding meal of my life; turkey, my dad made me special stuffing without celery or sausage, cranberry sauce and mom's magical yam stuffed oranges (I could not indulge in the asparagus dish).  Ordinarily, I look forward to these dishes all year and stuff myself to beyond limits knowing full well that I will finish the evening with a Crohn's attack (and I usually do).

This year, I trained for a week beforehand expecting that my current flare would ruin my favorite holiday (above Rosh Hashana only because of the stuffing!).  I came armed with on-the-spot interventional drugs of all varieties.  I purposefully encouraged gaming between soup and main meal, and music/pool between main meal and dessert so as to allow maximal space to be made and used.

It worked.  No Crohn's pain.  Even during years when I'm doing well in general, Thanksgiving never fails to assert its domination over my intestines via pwning my self-restraint.  My first Thanksgiving on record with no Crohn's pain.

My mother arranged a three part harmony of Mood Indigo and some other songs, and convinced my brother to compliment her unparalleled jazz piano on his acoustic.  There were at least three hours of singing and playing between dinner and finally breaking out the Four Desserts, over which time my voice warbled out of its comfortable hibernation and finally relaxed into familiar bossa nova and even operatic ambitions.  This was the first H.B. has heard me sing.

Unfortunately, as the music-making ensued, Doxycycline turned in its time card for the day; the dreaded and presently unidentified nervous spasms began to resurface.  I made it through the music session and dessert, but was forced to take H.B. and some leftovers and leave thereafter.  So unfortunate; the gaming and music-making could have gone on all night.

The bitter end has had not the slightest taint on today's sweetness, however.  I am totally satisfied -- enamored, even -- and looking so fervently forward to the next family gathering that it is a good thing I can't sleep, because I have no interest in doing so :)

I adore my mother's squash soup.

 

And the wine that I could not drink.

 

... And the wine that I could not drink...  

The turkey.

I love my mother's hands on the piano.

 

And I love my siblings.

beam of sunlight

I fell asleep at 830pm last night.  There was no aggitated squirming, and no hot pad.  Between 830pm and 545am, I was only woken up three times.  Three.  In 9 hours.  Hoorah for Doxycycline.  This is cause for a tremendous celebration.  I think I will demand that it involve a turkey and lots of squash dishes.

I did wake up with a throbbing left leg this morning, because, well, if it's not one thing...  However, gone by the time I made it to work this morning, it proved to be harmless.

I have been training this week for Thanksgiving.  That's right, triathalon style training.  I ate dried cranberries on Sunday and cooked salmon and zuchini on Monday, more dried cranberries and garlic bread on Tuesday.  Although the garlic bread brought a bit of upset, I am otherwise six days Crohn's pain free.

Take a minute to absorb that one.  Like sunlight.

Bring on the turkey.

sick day 4: the final report (because i had better be well enough to go to work tomorrow)

The urgent care venture was interesting.  Mostly because the mystery was somewhat resolved in only a matter of... four hours (shock and awe!).

Apparently, I don't respond to Cipro even though I've never taken any other fluoroquinolone antibiotics and could hardly have developed a resistance.  So I've upgraded to Doxycycline, of the tetracycline family, with which my body is very familiar.  Additionally, I was asked to take not one, but two more HCG tests along with a CBC and a tissue culture.  The woman I saw today told me that my original HCG on Wednesday was positive, not negative as I was told by my goddess PCP.  Today's both came out definitively negative.  So, as you might imagine, I'm perplexed.  If my HCG were in fact originally positive and today's is in fact negative, it is implied that the Cipro did its job and the infection is obliterated.  However, the symptoms having gotten worse instead of better does not jive with this conclusion.  Therefore, as we press forward with bigger and better antibiotics, I am skeptical as to their capacity for success.

However, with the combination of Azo and Doxycycline I am feeling slightly better already.  Nausea and headaches subsiding.  Perhaps I really had a bad reaction to Cipro... dizziness, headache, loss of appetite, nausea and weakness of limbs are all adverse effects of fluoroquinolones.