Tuesday, August 17, 2010

The painful skinny

The blog is back! Several months have withered away, void of the tick-tick finger dance that I once so enjoyed, and behind the monitor a significant number of changes have taken hold of my reality. I make no attempt with this re-found ability to type to make this posting fluid with wise nectar... yup, no interest in that. This is all about facts for friends, in no particular order.

1. "promoted" to Regional Program Manager at work. no upgrade in the salary, just a phat-er title that can easily be mocked with quotes from the Office.

2. DEMOTED... same title, less salary. It's called poverty, bitches.

3. Met the very best man in the whole wide world for me.

4. Moved in with the very best man. No, I am not engaged or pregnant, and do not plan to be for a very very long time.

5. Moved in with the very best man because of item #2, and that my crack-head "psychiatrist" landlord kicked me out of my SF apartment. oh, well, because we're in love, too. I'm now a resident of the hood.

6. Got into a car accident and was dubbed a racist because some guy hit me.

7. I was possibly re-promoted (?) details on getting my hours and salary are still pending.

8. And then I lost 20 pounds by sitting on my ass! the doctor's notes on that are a joy to share...

It started at one of two or maybe both times and places. I got the dreaded SWINE FLU (I wish blogger came with sound effects because I can think of a good one to put here) back in December 09. The rumors about it are true, by they way, it is a terrible terrible flu that forced me to curl up in the fetal position on my futon for a week, watching - but mostly falling sleep to - old Seinfeld episodes on DVD. I felt weak for a month and never even got in to a doctor's office because it was just too much of an epidemic in SF. (A month into feeling better, I was 'diagnosed' with H1N1 during a routine physical. how's that for top-notch, speedy Western Medical Care?) Sob sob sob, that was just a warm up.

February through April I had my odds and ends of colds, flues, peculiar viruses and throat infections that gave my doctors a scratch on their heads, but the illnesses weren't tooooooo outrageous to be believed for the Average Joe. For me, at the time, I was growing wearisome since my typical pattern is: get a mild cold flu in December, get over it 4 days later, get healthy, run amok for 11.5 months. Then again, I was suddenly sharing a world of germs with my studly boyfriend, so I suppose it was all expected.

May 16 (happy wedding day, Allison!) kicked off the worst series of negative health events I have ever faced, and probably, hopefully, ever will face. My throat was sore in the slightest of slight ways before I went to bed the day before, and I wondered about it the way you wonder what is in a jewelery box you get from your Great Aunt Martha on Christmas. Tacky fake gold is the best you can hope for then, and I was crossing my fingers and swallowing my pounding instinct that it was just a flair of jet-lag. Alas, I woke on the morning of May 16 with swollen glands, oozing white patches on my tonsils, a neck ache, a fever, and a head-ache for the memory books. Swallowing my instinct had a gnarly side effect! But it didn't stop me from putting my high heals on and giving my boyfriend his debut at Allison and Patrick's wedding.

Post the ceremony, pre the reception, things took another turn for the worse. I felt like a Chinese finger trap and invisible forces were pulling at me from both ends. John and I stopped at the Dollar Store and picked up some Pepto Bismol and ibuprofen, which each cost about $3.74; I nearly puked from the horror of false marketing. Or maybe it was the McDonald's across the street that was inflaming my nostrils. Or maybe it was just me. Either way, the pit stop was useless. We went to the reception and I sunk into a puddle of "muh" and "ughhhhhhh" until everyone was served dinner. I ate about half a salad and 2 green beans before I decided my presence at the party of a lifetime was not doing anyone any good. Back home, I crashed at 9pm and left dear boyfriend twiddling his sweet Californian thumbs with my oblivious and careless parents improving their sedentary ways in front of the TV.

The next morning, after not sleeping most of the night (the crash lasted maybe an hour), I woke up, then asked God to shoot me. Everything was in throbbing pain. My dad called to give me a chore, in which my response was tears and a desperate cry for help. His response was, "talk to your mother." My mom then called to figure out what was wrong and quickly made a doctors appointment with good old Brian Federonko, family medical practitioner. The best boyfriend in the whole wide world took me to meet my fate.

At the doctors, first the nurse said "oh yea, I've seen this" and blah blah blah, like she knew the kind of hell I was in. Then the doctor came in and said, "hum, ho, oh I don't know. It could be Mono!" (John interjected with a fair and classically concerned "she only kisses me, she can't have Mono.) Then the doctor mumbled on, "well, it could be anything. But I don't think it's strep," and proceeded to give me antibiotics (Clindamycin) for strep, plus some simple steroids (Prednisone) to make me feel buff whilst in hell. I then got nauseous, cloudy, and passed out.

By the time I got my prescriptions for death and got back to my parents house, my temperature was 103. I laid limp on the couch and my very best boyfriend ever rubbed my feet while my mom force fed me Pediasure and cooled my forehead with a wet towel. This, I've heard, is really the classic way for your boyfriend to meet your parents for the first time. I'm happy I got to experience it the same way it's done in the movies.

So... la de da, I actually started getting better. The next day John and I flew back to CA, and I stayed on my antibiotics diligently, 2 pills at a time, 3 times a day, 10 days in a row.

To cut short the un-shockingly disturbing part of this story, I'll just say that a couple of weeks went by and I was feeling relatively normal. My poop.... well... it wasn't looking quite normal, but when does a lady like me ever raise concerns about her poop to the public?

Then about 3 weeks post my bout with Clindamycin, the full-hearty diarrhea took siege. And it wasn't just any 'I ate too much cheese and now I've got the runs' kind of diarrhea, this was 'hey look at that - my intestines are in the toilet, they're yellower and more pussy than I expected' kind of diarrhea. And still, as the lady that I am, I resisted showing my concern for another week, until I realized that the situation was making me lose weight. "7 pounds, gone?! That's curious! Something must be wrong. I'll go to the doctor."

Once at the doctors office and 3 hours later, 1 confused and frantic nurse practitioner later, 1 rectal exam and 1 blood drawing later, and 4 viles for stool samples filled later, then 24 hours later, it was confirmed that the cause of my reckless weight-loss and month of disordered bowel movements was the rare and life threatening presence of Clostridium Difficile (or C. Diff) thriving in toxic 'I'm gonna kill you' mode throughout my colon and large intestine. In Amy-talk, what it really meant was that the antibiotics I took so diligently for the non-bacterial, possibly viral infection in May destroyed every good bacteria my colon needed to be happy. Without the good bacteria, the mean old bad bacteria, C. Diff, that many people have in itty bitty insignificant quantities, tore up the house and decided not to leave.

Metronidazol, a different antibiotic, is what my doctor gave me to kill the bacteria my old antibiotic gave me. Medicine is clever. The kicker was that the new antibiotic to treat my nausea, weight loss, and infinite diarrhea has side effects of nausea, weight loss, and infinite diarrhea. So for 10 days, 3 times a day, I took this shit that made me shit. I was too nauseated to eat, so I dropped 10 pounds. And of course, I wanted to die.

When I finished the Metronidazol, John was out in the back country being terrorized by devil teens. The 4th of July was upon us so and I went "fishing" with some friends, although we didn't get any nibbles. I was sitting pretty on the row boat when I saw the email from my drug addict landlord who was writing from Eastern Europe on a major bender that told me he needed to vacate my unit so his mother-in-law could have a place to stay when she's in town. The immediate realization that I'd be homeless and only making about 25k a year, before taxes, with my demotion prompted me to detach from my body for the day, dropping some tears on the way out.

When I got home that night to rest in solitude, I returned to my body when I recognized my bloody intestines were projecting out of me again with uninhibited violence. That, and my tongue was gathering a fuzzy white patch near the back, which made me choke and gag as if a colony of popcorn grissels had taken fort in that hard to reach place. I used mouth wash and brushed feverishly to no avail. And the next day, everything was worse.

So with boyfriend in tow, I went back to the doctor, or, I should say, to the waiting room of my doctor's office. It was 2 hours before my doctor actually came in to see me, spitting her emotionless apologies for being so far behind with other, more important, patients. I told her my symptoms, and she looked them up on webmd, then prescribed me a second round of Metronidazol... this time, for 14 days instead of 10. "This should kick it out of you... the website says relapses happen in 10% of patients with C. Diff." So this is what it feels like to be a minority - hmmmm! Exciting. My doc also looked at my increasingly white and fuzzy tongue with suspicion and uncertainty. She gave me some lozenges to take every 4 hours, except while sleeping, and told me my thrush really wasn't that bad. I wondered, "how bad does an oral yeast infection have to be in order to get rid of it? I've been gagging on it for days, that seems bad enough to me!"

So I took the shit that made me shit and want to throw up every night even though I couldn't eat anything all day for 14 days. The lozenges I could have done without. Not only were they unreasonably flavorless (like they couldn't have coated them with bubblegum sweetener?), but they made no impact on my fuzzy tongue at all. The only notice I did see was when I ate a blue sucker and my tongue stayed blue for 2 days, even after brushing my teeth/tongue, rinsing my mouth, and trying to scrape it off with my fingernails. Otherwise, the medications perhaps, maybe, seemed to do something for my digestive track. I lost 10 more pounds.

Once I was through with the antibiotics, again, I went back to my doctors office for a follow up. I wanted to be sure the C. Diff was outty, and to see if there was anything else I could to do demolish the thrush. This time, the office was gracious enough to replace an actual doctor with a medical student wearing a hybrid hipster-professional wardrobe of skinny slacks and pointy black boots. The picture on his ID badge proudly displayed a purposeful 5-o'clock shadow and a once-was dishevelled hair do that was particularly placed with a presumably high end hair gel. The trim hair do he toted to the appointment made him look much more serious. Hipster student proceeded to read my charts and sound out the syllables of my diagnoses, "Looks here like you have clah-clah-clah-strid-eum diff-ih-seal. That's a toxic infection in your colon," which he followed with an eager look as if awaiting a gold star and round of applause. I gave him my renowned half grin and tilted brow to reiterate my obvious disinterest in his presence. I told him my tongue was still bothering me, that my back and joints had become very tender, I now had an excruciating hemorrhoid, and my excrement were still under the weather, to which he told me I'd probably have to schedule a second appointment if I wanted those symptoms addressed. (As Alice in Wonderland would say, "This place just gets curiouser and curiouser...)

At last the real doctor emerged from her lazy day in the staff lounge to give me a new prescription for my thrush before she shuffled out again without question. John, who was once again faithfully and patiently sitting in the corner for profound moral support, practically grabbed her sleeve as she attempted the exit, and we bombarded her with questions. According to this doctor, I didn't need an exam, a test for C. Diff, or a second glance. She told me the bacteria probably still was in my system, but that it was working itself out, and a test would inaccurately show it's crawling departure. "BUT," she said, "if your diarrhea comes back, come back in immediately."

The next day, my diarrhea was back. BUT I didn't let that phase me. 1 day of diarrhea at this point was a good day. And to be disgustingly honest, the runs felt a lot better on my hemorrhoid than the nice solid dumps healthy people take. The day following I was back to being constipated, and thus assumed I was on the mend.

Life kept going on: I went to my other best friend's wedding in Michigan and actually avoided getting violently sick that time. I managed to chug down two-thirds a glass of wine over 3 hours, I danced the Macarena with gusto, and I even caught the bride's bouquet, so all in all, things were starting to look up.

THEN, last Thursday (drum roll please), the slippery slimy smelly mess started sliding out of me all over again. The mere thought of a second relapse made me imitate the effects of Metrodinazol with gags and fatigue. I held my breath hoping it was just a fluke day and I'd be back to my happy constipated self on Friday. Naturally, that was not the case.

Friday morning I woke up and jetted to the bathroom. Describing the experience exactly would probably be too much, but I would say that it felt like a stampede of angry bulls with nails on their hooves were running through my intestines and taking a swipe of every tender, red thing they saw. I'd sit down, let the bitches fly out of me, feel a little better, stand up, feel a second stampede kick off, sit down, and repeat. For. Four. Hours. Throughout the day I watched the chaos tear through me over 20 times. Many bull fighters met their maker in the process.

Saturday. Doctors office waiting room for 1 hour. Doctor visit for 15 minutes. It once again was full of joy, if joy were a synonym for being raped in the rectum and being rushed off to the lab to get blood drawn and get viles for another thrilling poop sample. Luckily (and I mean this part with sincerity), this doctor actually felt inspired to help me. Since I had been on a waiting list for a GI specialist at UCSF for 2 months, my new doctor told me she'd make some calls and get me into a specialist on Monday. I didn't completely believe her but...

On Monday the doctors office called me a few times and explained their annoyance with the receptionists at the specialists, which I empathized with completely, and that she had made an appointment for me at the East Bay Center for Digestive Health on Tuesday at 1:30. "Well, I'd have to reschedule my hair appointment, but I guess could make that work."

And when Tuesday rolled around, I was off first to my gynecologist for my regular thingy ma-bob since I've had pre-cancerous cells show up in the past. My gyno was an hour late and came in emotionally spitting her exhaustion and the set backs of her day. I reminded her to look at my chart, see I am a fucking C. Diff patient, and told her to get over herself, which she promptly did. More or less. Then she told me I have Mollescum, a skin virus that kids and HIV patients get. Then she told me the yeast infection I thought I had was not yeast, but bacteria. Yes..... I said bacteria. Not C. Diff, because if you know anything about the vag, it does not easily accept bacterias from other parts of the body. Vaginas have brick walls and are reinforced with cement and a whole lot of rage, so I knew that this unexpected situation was a problem all of its own. But what does my emotional gyno want to prescribe me? CLINDA-FUCKING-MYCIN! I told her fuck no, and held my breath to gage her reaction. She said "ohhh.... I can't, you're right." When I explained WHY I will never take Clinda-fucking-mycin again, (remember? Because my retard doctor in Michigan gave it to me blindly and gave me the toxic-turn-amy-inside-out syndrome?) her face, like all my other doctors, got all scrunched up and she judgingly and appropriately proclaimed, "He gave you THAT for THAT? That's odd." Then she was about to prescribe me Metronidazol, but she saw me break down into a puddle of bacteria ridden tears. Instead of a new antibiotic, she told me to buy... get this... Boric Acid on Amazon.com, put it into capsules, and keep that in my vag for a month.

From Wikipedia:
Boric acid, also called boracic acid or orthoboric acid or acidum boricum, is a weak acid often used as an antiseptic, insecticide, flame retardant, in nuclear power plants to control the fission rate of uranium.

Well alrighty then. I think I'll get a second opinion on that.

Later on Tuesday I skipped over to my new GI specialist, who looked at me and asked, "What is a healthy 26 year old woman like you doing in my office, and how do you get C. Diff?" Well wouldn't you like to know, Doc! He explained it all... what my colon was sure to look like (yellow and pussy), why my shit was green and slimy (sorry, this is a graphic novel), why I've relapsed again (if you relapse once, you're bound to relapse again), and what the plan was for me to get better (3 more weeks of really really expensive antibiotics, called Vancomycin, and perhaps an eventual fecal transplant, which is exactly what sounds like). It must be nice to be a specialist... you can talk shit about all the doctors your patients have seen before you, then charge them an arm and a leg for talking about shit for 20 minutes. I may have my new career plan laid out right there!

So, to wrap this shit up (and yes, I'm using the word poignantly and adding this explanation in parentheses just to exhaust your eyes that much more), I am currently the valiant carrier of:

  • Clostridium Difficile, though the poop samples actually came back today saying I was negative for it, everyone holds the firm belief that the tests are not accurate anyway, and I must still have it.
  • Bacterium Vaginitis
  • Mollescum Contagiosum
  • Thrush... it came back
  • Lactose Intolerance
  • and an Ear Infection
It was confirmed I do not have (though how much should I believe the tests for this?):

  • HIV
  • Parasites
  • Salmonella poisoning
  • Celiac Disease
  • Ulcereal Colitis
  • Crohn's Disease
  • or any STDs (holler!)
In the past 4 months, I have so far taken 2 different antibiotics for a total of 34 days, and if I'm able to find and afford the new prescription, we can make that count 3 antibiotics for 55 days. I've taken 2 different drugs for thrush, and 2 of those medications failed. I took steroids and got weaker. I've been prescribed to buy Boric Acid on Amazon... that's worth repeating. I've seen 8 different doctors (including one hipster). I've sat in waiting rooms for roughly 8 hours. I've spent nearly $300 on co-pays and prescriptions. I've had 2 total strangers stick their hands up my ___________ (madlibs). I've lost 20 pounds. I've embraced the fact that Hell frozen over looks a lot like San Francisco in July.

But with perspective, I've been to 2 of my best friends' weddings. I've moved in with my best friend. I took a little time off work. And I was inspired to write again. Like the ceramic key-holder decoration my mom got me says, "There is always, always something to be thankful for."

I am thankful for my support friends and family, and especially for those who dared read through this colossal blog post. I am thankful that I now have a doctor who will advocate for me until I am better, and then will probably advocate some more. I am thankful I have a place to live and enough money in my accounts to buy soft, easy to digest baby food. I am indebted to my boyfriend who has loved me through this entire ordeal and has sacrificed with me to ensure I get healthy and happy again.

Today I am sick. But, shit, I'm grateful!