Wednesday, March 31, 2010

How Today was Grand

1)  no morning pain or nausea

2) ate a few handfuls of Kix for breakfast --> no pain or nausea

3) super efficient work day

4) sunshine came out

5) half a yam for lunch --> no pain or nausea

6) talked to Andy for two minutes!

7) got home with energy and ran, cleaned the kitchen and took care of the black mold problem our apartment manager assured us we wouldn't have --> no pain or nausea

8) sushi --> minimal pain, no nausea

9) spent some pain-free time with H.K. = amazing

This day has been very unexpected and even more appreciated; today is the first day in months that I've felt myself, been able to do what I wanted to do, and it is the first day in much much longer that I've been pain/nausea/bloating/vertigo-free.  I'll take it.

Monday, March 29, 2010

Crohn's 'n Me vs Dr Incompetent

As H.K. has observed, whenever one physiological problem seems to reach a solution, another two or three surface.  In line with tradition, my intestines seem to be much improved (albeit, not nearly pain-free) and the next anxious battalion  has charged.

As I mentioned, the tummeh proper is in a sour state.  The mystery infection-which-is-not-an-infection-but-we-want-to-treat-it-with-antibiotics-anyway from November has returned in full glory.  And it is allergy season, which my not-yet-recovered immune system is still pussyfooting around like it has no conquering ability.

In english, I was awakened at 3am with stomach pains; I have woken up by pain maybe twice in my lifetime.  My half alertness portended a long, also painful attempt to urinate; why does my body think I have prostate cancer?  Too tired to make tea or boil water for my hot water bottle, I rolled back into bed as you would imagine Jabba might do could he invoke an angular momentum.  There, I pulled the trash can to my side and spent an unpleasantly fuzzy interlude disgorging mucous.

In summary:
1) I can't eat
2) I can't sleep
3) I cant breathe
4) I can't pee

In good humor:
1) I will be sure to fit into my wedding dress; when I do bother eat something it is only to soften the blow of the prescription smorgasbord, and if I can't hold down broth, rice noodles or Ensure, we have a serious problem.
2) H.K. says sweet funny things when my groans/expectorating pseudo-wake him up
3) H.K. says sweet funny things when my suspining/expectorating pseudo-wake him up
4) the doctor who interpreted my urinalysis prescribed Cipro again, which did not do anything last time this occurred and neither did Doxycycline...  so now that Flagyl has failed as well, you would think they'd venture out beyond antibiotic, but darned if they're not going to test every one that exists on me before they're willing to admit that the consistently negative test results actually imply that antibiotics might not be the way to go.

In reality:
1) the last month or so was spent eating some very lovely (Crohn's legal, mind you) creations and I am grateful to have been able to enjoy that.  However, if I don't get to eat anything at my wedding, I'm going to be thoroughly embarrassed in front of 50 people.
2) I'm still going to work every day, but I'm cutting out an hour or two early to work from home because I can only last so long.
3) This is contributing to my sleep loss more than anything, and I'm being good about expelling mucous rather than delivering it to my gut.
4) This is the biggest tub of bologna I have ever dealt with.  Seriously?  Is this incompetence real?

From here on out, I have decided that the Crohn's Baby and I are teaming up to kick Dr GI and Dr PCP's asses.  This is not fair to either one of us.

Friday, March 26, 2010

Can you feel it?

The stomach situation has escalated.  I'm in a routine now where I wake up in the morning feeling fine, and avoid eating until 10am or so when I absolutely have to because at 10am I take stomach-annihilating meds.  After I eat -- no matter what I eat or in what amount -- I am fine until an hour or so later, by which time I have developed a crippling bloating nauseating pain in my stomach (literally, it makes me have to transition into work where I'm sitting down and not using my brain).

The bloating nauseating pain in my stomach slowly amplifies until 7pm (two hours past when I usually have to eat in order to avoid intestinal pain) at which point I determine whether it will be more beneficial to pass on dinner and take my antibiotics on an empty stomach or to eat a bit.  Either one intensifies the situation more -- there's no way around it.

I started off taking ginger to help it settle which did absolutely nothing for three days, so I have stopped.

For the last four days I've been a complete baby and come home from work to hot tea, a percocet, my boiling hot water bladder and the couch.  H.K. is worried that I'm going to give myself skin cancer from eleven years of hot pad/water bladder burns.  The only way I can lessen the pain in any significant way is to burn it away.  One percocet does very little to relieve pain and taking two knocks me out cold until 11am the next day.  Which I absolutely not afford right now since my coworkers are all out of town or otherwise not in for the next few days and not only to I have to make sure I hit all my time-sensitive deadlines, I have to take care of one or two little things of theirs... so I kind of have to be at work.  Screw percocet.

This has been the pattern for six days.

The other pattern has been an odd heavy nausea/vertigo/hot flash situation whenever I exert energy:  running, crying, losing a little blood.  Apparently my body goes into minor shock at every minuscule effort?

Dr GI says all of this can be caused by prednisone (which I haven't taken for three weeks).  He is contemplating a more comprehensive working theory...

On the bright side, I think we figured out a way to plan this wedding that makes everyone at least happy enough to pretend they're not pissed off.

Sunday, March 21, 2010

The Biggest Disappointment, and the Greatest Happiness

At this moment, H.K. is submitting his film to his first festival, and I am sitting on the bathroom floor pumped full of oxycodone, in tears (due to shame, not pain) and attempting to burn my pain away with my hot water bottle. 

I am missing his film debut because of this wretched stomach spasming that can be avoided neither by eating nor by starving.  This is something I have been looking forward to for two months (since he started this projects).  All of his cast, crew, my family and some of our close friends will be there to support him.  I will not.  

This damn burning, aggravating, undiagnosable "non-UTI" which I posted about the last time it occurred is back full throttle on top of this strange stomach situation.  It is unbearable, and makes the stomach pain twice as irritating... so you can imagine that the disappointment and shame of not being able to attend H.K.'s debut makes everything much worse. 

I will not be able to sit in the audience when he accepts his first place award (which I have no doubt he will) and say, "that strapping young steed who just blew all your minds with his newly discovered talent is the man I'm going to marry; you can't have him."  Neither will I be able to punch out all the groupies who flock to him after the showing.  But most importantly, I will not be there to support him in this technically small but momentous event.  What if Daniel Baldwin is there and offers him the sponsorship of a feature length on the spot??

My mother, sister and I found my wedding dress today.  I -- a ragamuffin who does not wear nor own dresses -- apparently look good in wedding dresses in general.  I was very pleasantly surprised.  I was also surprised to choose a more formal long gown over a less formal tea length (similar to the confounded befuddlement that accompanied my choice of engagement and wedding ring).

I am so overwhelmingly excited to marry this man.  And so devastatingly upset to not be with him tonight.  Damn Crohn's disease today, and damn urologists who refuse to see me because my variation of dying isn't serious enough to them, and thank goodness I have an appointment tomorrow with a trusted gynecologist who will probably do more for me than the urologist would anyway.

Saturday, March 20, 2010

Of Percocet and Superglue

Bless me, Intestines, for I have sinned (apparently); it has been two weeks since my last prednisone.

Because it took five months on prednisone for me to notice any non-painkiller-mediated improvement, I had given up on this (and last) year's flare being a fresh area.  This shaky conclusion left me befuddled, because the pain had been focused in a new area (a.k.a., not the ileum), and so I suspected that prednisone would clean up the new dirt, as it were.  Low and behold, I am but two weeks without prednisone and am again unable to eat most anything in my [generally] modest diet without experiencing heavy bloating, nausea and pain.  Apparently prednisone was doing some good after all, it just took five months to show it?

What is interesting about this new baseline is that it is central to my stomach -- yeah, very much not the ileum or any part of the intestine -- but that it resembles the pressure and pain I felt in my intestine several months ago.  The pain, although not nearly so crippling, now accompanies the feeling of imminent explosion in my stomach pouch.  It is an interesting ordeal trying to figure out what has happened over the last two weeks to encourage this development.

1) some yogurt-covered raisins
2) tomatillo sauce
3) two slices of marionberry pie (no seeds)

So I've started from scratch again over the last 3 days (broth, crackers, egg) to see if I can regain calm seas.  It's not worked yet.

The non-food culprit exists, however.  Affectionately named Allergy Magic, and pharmaceutically marketed as Allegra, the tummeh proper is very sensitive to this drug.  It must be taken on a full stomach, but NOT with food.  Half an hour after food is the recommendation, and a non-sugary meal, at that.  A full 12 oz of water is an additional must.  These precautions may not be enough to keep my stomach from reacting poorly.  It is a possibility.

In spite of it all, I have taken an oxycodone this evening, hell-bent on indulging in chicken, zucchini and some light pasta tonight...  before crusading for wedding dresses tomorrow.  Am I good, or what?

And most importantly, I sliced the tip of my index finger this afternoon whilst cutting bread.  With a giant serrated bread knife.  I'll find out tomorrow how deep it is, but based on how quickly the pain was quelled (10-15min), I concluded that I did not scathe the bone.  I did, however, cut plain through half of my fingernail, which is quite gnarly and could be bent away.

Although I didn't figure myself too frightened, and although H.K. and I iced/ethanoled/pressed/gauzed the poor piggy fairly efficiently, I noticed that I had a small wave of shock.  My body heated all but instantaneously to the point of black-spotted dizziness and I had to sit down -- the shock itself was the only thing that actually shocked me.

My favorite part was supergluing the gushing gap shut.  Oh yes.  This is a frequent medical practice; did you know?  I didn't.  So instead of going to the ER, we glued my finger tip back on.  It was awesome.  H.K. is a fine doctor.

Thursday, March 18, 2010

Food of the Day: Tomatillo

Tomatoes are quite acidic, no matter how you cook them.  I have an unhealthy propensity for acidic foods (tomatoes, vinegarettes, wine...) lately -- particularly since socializing and celebrating have reclaimed significance in my life.  This is a terrible weakness.

I decided two nights ago that since tomatillos are green, and I've always wanted to consume green tomato (of any variety), and Kathryn posted this delightful recipe (which I made without cream), I decided to make tomatillo sauce and (soy) cheese enchiladas...

They were beautiful, and tasty, and my guts mobilized an insurmountable army during the night and destroyed me the following day.  Perhaps this is a sign that I should tone down the acid.

I wrote a post several weeks ago defending onion soup: this, in reality, was a legitimate case.  Tomatoes, however, are different.  I may venture to use Paste tomatoes which are infamously lower in acidity than other tomatoes -- red, pink, yellow -- which all range in the vicinity of 4.6 pH (1).

I may also attempt to overripen my next batch of tomatoes before consuming, as acidity also decreases -- aka, pH increases -- with overripening and bruising (1).

Tomato juices are also lower in acid than tomato solids, go figure, so some tomato juice soup may be high on the experimentation docket (1).

Or, of course, there's also cooking tomatoes with other vegetables to quell the acid.

Or not eating them so often.

What I did learn about tomatillos, in particular, though, is that they are unusually high in lithium and are recommended to eat when moody or manic (2).  Interesting, no?

Wednesday, March 17, 2010

A Crohn's Affair

me: hey, could you email me something...?
H.B.: you want an email that says, 'something'?
me: there is a document on my desktop
H.B.: k, sent
me: you are my prince
H.B.: lame, i want to be a knight

Announcing the promotion of H.B. to H.F., via engagement to yours truly.  However, as requested, instead of henceforth being referred to as "Heroic Fiance", "Heroic Knight" will be applied; to be replaced by "Heroic Husband" in July.

Yes, we are expiditing.  No, I am not pregnant.

Crohn's-Relevant Considerations that I thought were amusing:

1)  Location:  We chose to have the ceremony on HK's family's gorgeous property in San Rafael (ahem... next door to Lucas Ranch...).  This decision was made primarily based on sentiment (gross) and comfort.  However, it was also chosen because I am anticipating a day of moderate to high restroom visit frequency, and would like to be able to slip away nearly-unnoticed, which may actually be possible there.  Other thoughts: how funny would it be if I were stuck in the restroom for 30 minutes and everyone began to assume I had fled?...

2)  Cake:  Hi.  No dairy, please.  Seeing as wedding cakes in particular are purebreds of butter cream and sugar (leavened solely by magic), my options here are quite limited.  Options:  a) indulge, b) scrape off my icing in front of EVERYONE watching, c) pay $475K for a dairy-free cake and risk 40 refusals to eat more than a forkfull of the thing.

3)  Food:  To appease all, the menu will have to include normal, vegetarian, vegan, cooked, raw, oily, and oil-free options.  Whoever I convince to prepare these dishes for me is going to hate me.

4) Wine:  Make sure I get all the moping and crying over not being able to over-indulge in life's-greatest-gift-to-man out ahead of time so my Moon Face is not exacerbated by swollen glands.

5) Drugs:  Make sure that I spend the days before the ceremony eating mildly so that I do not have to toke up on painkillers and nausea medication and fall asleep during the big moment.

6) Hair:  What in the world to do with my hair (which I would have otherwise worn down) to hide the fact that I only have half of it left on my head.

7) Those who have done this before me:  Am I missing anything?

Thursday, March 11, 2010


I've always appreciated the opportunity to be a big fish in a small pond.  My undergraduate studies were formative because in a liberal arts environment I was able to build what I wanted to exist if it was not already at my disposal.  I am able to flourish in my work environment because I work in a small lab, and am proficient in almost all of the many techniques we employ -- an opportunity devoid in most research technician experiences in major labs.  Why in the world I thought I wanted to become a water strider in a small pond, I... well, I was naively drunk on ambition and high on painkillers at the time.  It happens.

It has taken me longer than I expected to come to terms with what I am finally admitting was, in fact, not a major failure or condemnation of my prospective life.  Explaining this requires an extrapolation of the last two years.

In 2008 when I graduated, my plan was to stay in Portland working in my newly salaried lab position, get a grant funded, get a paper published, and apply to medical school.  However, having met H.B. and had a heart to heart with my boss, I relented to the reality that medical school would probably be my physiological undoing.  That was June of 2009.

So mid-June, I put away my MCAT books and invested in the GRE (which is much cheaper, much simpler, and much much less inspiring).  That was a Friday.

On Saturday, I was writhing on the bathroom floor unnerving H.B. with labor pains such as I hadn't felt in ten years.

In August, I finally met with Dr GI who was content to see me after staving me off with oxycodone for two weeks.  Glossing over the finest details, I took the GRE at the end of the month on painkillers, nausea medication and having eaten only fake broth, baby food and crackers for several weeks.  Not one of my best performances.

Nonetheless, I applied in November to four of the most prestigious PhD programs in Neuroscience that I could find.  In my defense, it's not my fault that the only places who offered my ideal program-PI combo were the hardest to get into in the country.  It is my fault, however, that I was so fool-heartedly naive as to think I might be competitive in those programs (as a non-resident), and to discard any opportunity that wasn't up to par with my quixotic dreams.

Since November, the condition of my guts has improved astronomically.  That being said, I am not yet what I would call "physically well".    But it's getting there.

And here, my dear readers, is the kicker: I'm not crushed by this failure.

I am nothing if not obdurately and nonsensically ambitious.  Making the drastic changes of heart and career direction that I did in June should have been, of themselves, enough to convince me to take another year to get it all put together the right way.  A healthy me might have been sufficiently adjusted and prepared applications by November.  Having been in pain, starved and on drugs, however, I am willing to make the concession that I was hasty and would have fared better from having given myself a year to stabilize.  That wise thought did not occur to me at the time.  The things a deadline can do to one's soul...

I now have another year to make myself invaluable, to heal and to get it right the next time around.  And I can survive this set-back.  Things may actually get accomplished this year, too; I have three papers and two conferences in the works, and will be moving toward disability accommodation so as to avoid another tragic event as that which usurped my intentions last August.

Needless to say, I'll be looking into smaller ponds next year.

Currently, I have had six Remicade infusions, have dropped 6MP, and have finally tapered successfully (or so it seems) off of Prednisone after six turbulent months.  I am eating 4-6 small snack/meals a day and avoiding pain 70% of the time by having eliminated quite a few foods entirely.  Nausea is usually quelled by the late afternoons, and fatigue has been mild and tolerable.

Another year to spend in my beloved lab, in my beloved Portland, near my beloved family and with my beloved H.B..  Things could be worse.