What am I going to do in three months when I can't cure my ails with days like this? I do love to be in the ocean, truly, but nothing revives like a PNW river.
We had a heart to heart last night, H.K. and I. He's scared, which puts the situation in a startling new light for me. The process of decay is not easy to hide, nor do I consistently give it my best effort in front of H.K., poor thing. It was necessary for him to express his worry, I think, for me to remove myself from brooding and take initiative (read: wait more optimistically for my GI appt. at the end of May). This is not an unbeatable foe; it requires only the cooperation of my physicians and a plan of attack that can be undertaken successfully within three months, because hell if I'm going to be thrown back into the darkness of 2009 before the move south... and hell if it's going to make me put off school for another year. It's hard to keep in mind that I'm not a unique scenario, just another serenader... on lots of antibiotics.
This morning's Remicade excursion began like any other, with a cold, dark and barely-awake drive to visit my second home. Michelle and Wish, my regular infusion center nurses, perked me up with chatter of new serum biomarkers, holidays and my veins. Feeling extraordinarily adventurous today, I opted to give my poor inner elbows a breather in favor of a more fancy-pants IV site: the wrist. Though I have what is probably an unhealthy comfort with needles, IVs in the back of the hand and wrist have always weirded me out. It was, to my great amusement, very classy. Michelle even put a bit of gauze between the needle and the tape so as not to rip out the tube too harshly and invite the typical mess due to the allergic reaction I have to the tape itself.
Wish inevitably asked about my ear, and I refrained from extrapolating my theory of an organism from an alternate universe in favor of the more benign, "this is seemingly a consequence of a suppressed (oppressed?) immune system." Though it has been a noble fighter in the past, my line of defense is whithering to a sad benched quality -- thank you, Dear Remicade. In no uncertain terms, this drug has saved me from regular excruciating pain and replaced it with an irritating inability to fight off much of anything that assaults me. The Colony has by now expanded into my hairline, around the lobe of my ear and is creeping down my neck and onto my face in an inglorious manifest destiny. (Because I have been bragging about this for three months now, I feel that I owe you:)
Gnarly, eh? Conscious of keeping this blog PG-13 rated,
I sopped up the leaking blood and serum for you.
If it gets to the point where my eyesight is threatened or I fear it will otherwise interfere with graduate school interviews (one acquired, four to go), I may invoke a short-term Prednisone stint in effort to fight the inflammation that not antibiotics, hydrocortizone, athlete's foot cream nor hydrogen peroxide have been able to defeat. The Derm appointment is only ten days away (my birthday present to myself!), and I count the days (sometimes broken into 8 hour segments... no joke). We shall see if he supports my Steroid Hypothesis.
Meanwhile; bladder is fully functional, intestines are in agreement with the current diet (even with a few holiday indulgences), night sweats are somewhat controllable or at least don't wake me up as often, and the nasal exoskeleton with its tremendous stores of green mucous continues to subside with the help of Nasal Crom. Progress, though painstakingly slow, is finally observable.
Well, I am broke. Thus far in October, I have had eight separate doctors appointments spanning five doctors. I have three more -- count 'em, three -- this coming Wednesday before I head south to Willamette U. to be on a career panel for up-and-commer scientists and then get infused with Remicade before flying to San Diego for my first major conference. With all due gratitude to my government bosses for providing excellent coverage for their employees, never underestimate the paycheck-dissolving power of copays and prescription fees. I can no longer afford to eat sushi twice a week. Woe is me! My bedside table is officially over flowing with all my vials of drug, and I'm not entirely sure that my body is tolerating them either.
However, our home is thoroughly draped in Halloween splendor and this Saturday's party -- whether or not my guests decide to appear in costume, ahem -- will be well-worth the cooking frenzy (let's not kid ourselves -- I am not above a last-minute run to Costco to make sure the meal is edible). And Sunday... Sunday is reserved for horror flicks and football. Hell. Yes.
The cycle has snowballed, and I am, as yet, uncertain whether it is calming down. Despite all the more tangible symptoms, the fatigue is what is most getting in my way. Because of the fatigue, I don't run in the mornings. When I don't run in the mornings, the depression comes on all the more easily. When the depression sets in, I don't sleep because I spend the evening terrorizing and bloating my sinuses. When my sinuses are bloated, not all the sinus irrigation/flonase/sudaffed/fexofenadine or promethazine in the world can help me sleep. And when I don't fall asleep, it doesn't matter how many times my bladder forces me to get up through the night.
Where is my colon in all this, you ask? It's fidgeting on the sidelines trying so valliantly to get onto the field. "Lookit me! I'm giving you car sickness every morning and every afternoon!" it wails, "I'm giving you the most delightful smorgasbord of Throughput and you're not even paying attention to me!" Alas, my loyal companion, you have taken a back seat to other -- dare I say, more pressing -- issues. Never fear; your time in the lime light will come again soon.
Halloween approaches, and so I begin my ritual of orange-food gorging, pie making and home-spookifying. This year, I have inherited a few decorations from my mother; among them, a porcelain child in ghost costume holding a glowing Jack-o-lantern which so encompasses all of my warm childhood memories of this very important holiday.
In honor of this conferment, and of all the new drugs I am on, I have decided to throw a small Halloween party this year. To hone (read: stumble embarrassingly through) my hostessing skills? To give my apartment some personality and to fill it with warm and spooky company? Because I am feeling well enough to truly enjoy the season? Perhaps all of these are their own motivation. However, it's mostly because I want to make edible eyeballs out of lychees and grapes and hide them in peoples' soup.
In the spirit of the winter season, the beautiful rain, and my venture back to a balanced state of mind, I have visited enough doctors and filled enough new prescriptions lately to account for well over half of my paycheck. The elusive urinary tract syndrome, which has been addressed by GI, primary, OBGYN and urologist is being treated with yet another antibiotic which seems to be at least participating in warding off the next episode. The outer ear infections are being treated with antibiotic as well, and the crusted plasma-oozing sore behind my right ear is being treated with a clever combination of cortisol and athlete's foot creams. The dermatologist assigned to me The Next Big Thing in acne antibiotics and tried to convince me to try Accutane (yes, on Remicade. yes, I rolled my eyes at him and explained what Accutane is, what Remicade is and what a liver is). My nasal exoskeleton is on its third (or fourth?) week of the Allegra-Flonase-Sinus Irrigation trifecta and is being admirably defeated (read: the reasons I don't sleep at night are no longer because of my inability to breathe). And lastly, I have been put on sleeping medication as a first serious approach to overcoming this ghastly depression which has been pwning me since July. Promethazine finally procured although it took a month to convince my GI that the vomiting actually is impeding my ability to work (that's a lie, because work is going exceedingly well, but what's a girl to do?). Now I just need to go to the dentist. When I get my next paycheck. And if I don't first spend that paycheck on Halloweeny Essentials.
This body is currently full with drugs. Damn antibiotics for working far better than any Astragalus, Ashwaganda or l-theanine supplements I've ever taken. H.K. remains, of course, my most effective medication.
This weekend, we acquired several very large and very face-friendly pumpkins. Hamicar and Toby remain faithful guardians of our domain, although only when the sun is out. Next weekend, H.K. has nobly volunteered to help me experiment with the Halloween menu items so that I don't kill any of my guests. Successful recipes will be posted. Unsuccessful recipes will probably also be posted.
It may be surprising to my viewers that I am awake at 3am. The typing kind of awake. Shed your marvel, my friends, for this has been my habit for a month, now.
In June, when the allergy bug settled in my sinuses, this was just a regular infection, and I treated it as such with saline, my trusted Nasal Crom, and even hopped on the Neti Pot wagon. By mid-July, when none of these therapies worked, I threw up my hands and called it in. By this time, I have developed inner nasal scabs which made mucous expulsion quite the bother. A prescription of Flonase was bestowed without even an appointment. Beautiful.
Fifteen dollars and three glorious weeks of regular breathing later, it was time to abandon the steroids and hope that their effect would be sustainable. Fat chance. So I called it in again, asking my doctor what the next step might be. "Try saline washes and using the Neti Pot," says my doctor's replacement.
"Are... are you serious?" I wanted to respond, but refrained in the interest of actually getting some help on the stagnant-green-pool-harboring nasal exoskeleton front. So I actually tried these saline treatments again, hoping that with the steroids having brought me back to stage one, they might work. Negative. A month later, the scabbing and green mucous flow are worse than ever, so I call it in again.
"Hi, I've been having some problems with my nose and may need antibotics."
"Well, why don't you give me an idea of what's been going on, sweetheart," says the Southern Bell on the other end of the line, who I must trust to translate my story to my doctor.
"Well, three months ago I just had what appeared to be a regular sinus infection. I treated with all the different saline washes for a month, was prescribed Flonase for a month, and the infection got worse when the steroid treatment ended. So now I'm concerned that I might have a more serious infection and be in need of antibiotics. This is my first allergy season being on Remicade, so I'm susceptible to infection. This is the first time in my life I've had a sinus problem nearly this severe and that may have something to do with it."
"Well bless your heart, you poor thing. Let me send this message to the doctor and call you right back!" I've spoken to this woman many a time. She is, if not effective, very sweet.
[Time lapse of three hours, Southern Bell calls me back]
"The doctor says she'd like you to continue using saline washes and wait until the peak season is over in October."
"Excuse me?"
"Yes, she said continue with the saline. You're doing the right thing."
"Alright, look. I know this isn't your fault, and I apologize for getting upset, but I'm at my wit's end, here. Saline has not been anything resembling helpful during this whole situation. I have gotten progressively worse with the exception of the fast-acting and fast-disappearing effects of Flonase. I have been expelling green mucous out of my mouth at least ten times a day because my nasal passage has developed an exoskeleton so strong that I can't blow my nose because the mucous has no way to push through. I bleed every time I sneeze, I now have scabs on the outside of my nostrils, I wake up at 3am every night, and frankly, I can't breathe at all unless I flush my nose with hot water every morning and try to peel away some of the blockage, and to exacerbate this I am in the crux of the most stressful time of my entire life. Saline nor steroids have been helpful in this matter and have, in fact, allowed things to get much worse, and the doctor doesn't think that I might have an infection that my immune-suppressed body just can't fight on its own?"
"Well honey, I'm sorry. Let me send a more explicit message to the doctor and get back to you soon."
That was a week ago. I think I may have scared off poor Bell.
My exoskeleton needs a hot shower. I'm effing tired. I'm effing stressed. Please give me some effing antibiotics. I am working 50-hour weeks, writing grants, writing graduate school applications and studying for the GRE (something which I can't quite support logically). I haven't run in two weeks because, well, it makes my sinuses swell.
Anyone have thoughts on just chopping the thing off, going Tycho Brahe style?
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.
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 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.
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.
