day one

Its my first full day out of the hospital. They really truly released me yesterday. So far my day has been spent entirely the same way it has been spent over the past three weeks. Sitting in a bed with my laptop, intermittently dozing, feeling guilty about not starting on my school work, wishing with every last ounce of wishing power that I could eat just half of a pb&j sandwich, except all this without the convenience of being heavily medicated with narcotic drugs. Which I probably miss way more than I should.

Where are the cats and why aren't they keeping me company.


I haven't been a total schelp, I did my laundry yesterday when I got home, and cleaned my room, and showered. so - yeah, taking it easy today.....nice, and ---ZzzZZzz....

sike

So, literally on my way out of the hospital yesterday - finally on my way home, my biggest dream of all dreams as of late, adorned with bags and bags of miscellaneous crap one collects over a 3 week stay in the hospital, in my chair ready to be rolled to freedom, I notice heeeyyy---this stuff coming out of my drain looks like, well, uh....poop. man, must be one nasty abscess I'm draining. By the time I get home and *heroically* begin to unpack, after, of course, a 15 min love fest with the cats who don't rememeber me, there is def lots of suspicious gunk reeaaalllyy flowing out of my drain.

Chad comes over, and with little debate , I'm of course thrown back in the car, and of course whisked back to the effing ER, and of course we sat there for hours waiting for assesment. And of course, my suspicions are confirmed, yes, your intestine have now managaed *Brace Yourselves!* to tunnel a hole into your abscess and I am now draining intestinal contents into my abdominal cavity! God. I'm good. honestly. On the day of departure and everything! Treatment for said diagnosis? No eating (like literally none, I'll be getting IV nutrition) and I have to adorn an unhideable drain. Thats draining crap. Not too bad maybe? Maybe not, except that it takes at least a month to clear up - upwards of six months. Sooooooooo, yeah. fuck my life right now. I'm typing this from a new hospital bed, where I have a roommate, and they like to talk to me.

titleschmitle

When did this blog take some pathetic turn for the worse, when did it succumb to some maudlin whiney bullshit one tracked theme of hospital perils. I can't seem to break out of it though. But you know, its so weird, when your only external stimulus is SITTING IN A HOSPITAL WITH NOTHING ELSE TO THINK ABOUT except that I'm still sitting in this effing hospital and I'm not at home, and um, I'm also in the hospital and miserable about the fact!? Then yeah, I guess thats all you get to read about until I leave. And speaking of leaving, right now I really feel the need to inform you that I sat and cried like a little baby in front of 5 doctors yesterday who told me my now new soonest release date is Monday. But that is if I can meet a lot of extraneous medical hoopla and criteria over the course of the next 48 hours. So, in Doctor speak, Monday means 2017. and I cried in front of all of them. and they barely batted an eyelash. In fact, I think I heard cash wagers and congrats of my imminent breakdown being divvied up outside my door as they left.


On the bright side, after searching in vain for the bariatric unit, the place where they keep all the new babies behind a glass window, and the psych ward (where we also hoped they would be displayed behind some nose/finger smudged glass display), my sister and I had profound luck stumbling into the PT gymnasium. It seemed as if maybe it wasn't where we were quite supposed to be, but seeing as they left some lights on, and the doors were unlocked, and most of the equipment was still conviently plugged in and on.....gosh how *couldn't* we have helped ourselves.

Today my adventures will take me outside. I plan on dragging my IV pole around campus. Keep an eye out for me. In fact, put a present or two in your pockets just in case you run into me, because material goods are just the thing I need to keep my morale slightly above the level of death.

FRIDAY

okay, so they are super seriously promising me I get to go home tomorrow, Friday April 10th.

I have been in here since March 25th. That is a 16 day grand total of eating hospital food, sleeping in a hospital bed, showering in a hospital shower that doesn't get hot, fretting and stressing over the blatant lack of even maintaining a baseline of health, 16 frustrating days of watching two teams of doctors play I know whats best for her so butt out - entertaining, but um - not very conducive to me getting the crap out of this place, and 16 days worth of tests, most of them odd, invasive, sometimes painful, but I now know my basal metabolic rate while lying in bed watching parent trap starring pre-whore lindsey lohan (?). So yeah, quick 16 day recap



March 25, went for a small bowel study, this was the last morning I left my house.

One of two blood transfusions, pre and post op.
After gratituious vomiting (guess how great if feels to vomit only days after major abdominal surgery) one unfateful evening, they shoved an NG tube down my nose and into my belly - so all my stomach/upper GI contents are promptly resucked back out and displayed in my proud see through vaccutanier. This is what a swiss roll cake looks like enroute from packaging, my mouth, my esophogeous, and back up the roller coaster ride of NG vaccusuck.


The vaccusuck --(proudly now) - I filled about one of those a day without even eating, its a little known fact my body is comprised entirely of pond sludge.


//kkuucchhhhaaaaa Luke I am your father kkkkkuuucchhaaa// or. you know. Caliormetry testing - so they can install a more or less permanent IV in my arm that travels directly to my heart feeding me TPN - i.e. liquid food, also good for narcotic drugs - tends to deliver a little more of a punch when administered through those lines I tell you what.


new portal of life.

and then last but not least, after 16 days of some really swell gumshoe efforts, it was determined the 105 fevers, massive cramping, obstructions, were all lo and behold the culprit of a large pocket of potentially infectious fluid hanging out in my abdomen. So this morning I went in to have them suck it out, leaving me with my final consolation prize of a JP tube that will continuously drain the contents of my interabdominal space a few mLs an hour. Also, I get to cleverly try and (its absolutely impossible) hide underneath my clothes.


Great. So they are letting me go home tomorrow. I have so much schoolwork to catch up on, a paper that will literally probably take me 30 hours to write, two paper presentations I have to put together, a take home test, all the class material that I have been missing must be caught up on, and oh - then of course trying to do what I'm really here for, and that's figure out my project so I can actually start working on something relative that might get me a PhD. While administering my TPN, emptying my drain, trying to figure out how to walk for longer then 5 min without needing to sit...etc..etc..

On the bright side, my older sister is flying in from San Fran to stay till Wednesday to help me out, hope she has a lot of quarters - I'll draw her a map to the laundry room.

pee award

At approximately 4am last night I received 10 mg of lasix, the doctors were worried because I literally peed twice yesterday and started just blowing up with fluid, my arms, legs, face - turned into gigantic basketballs.

From the lowest dose of lasix possible to administer, that is supposed to be effective a mere few hours, I have now urinated 8,800 mLs in the past 24 hours and I'm still going strong. Honestly honestly not exageratting these numbers, the nurses and I just stood around and marvelled over them with me.

thats almost *TEN* liters of water I was holding onto and its not even the end.


p.s. now i do really hope I'm going home. didn't make it today =(

only read while listening to soft piano. also read outloud. with the lights dimmed.

I really hoped that last visit was it, the visit where the doctors couldn't really put their finger on what was wrong with me after a week of unnecessary tests, several days on the 'no eating' diet, a melee of doctors that communicated solely with rocks and birds, certainly not their colleagues or me - and so they just kind of threw out some educated guesses as to why my belly has become a constant source of brutal misery and sent me home. And things kind of just slowly festered, until I found myself slithering through lab on my belly, pulling myself hand over hand to whatever destination because walking really hurt that much, assuring my labmates that no - ive gotten quite used to being in this much pain so its kind of just normal now, thanks for the concern though, try not to step on me as you guys just ""walk around."" I'm just going to roll my way to the microscope room now where I have to sit unfathomably upright for hours and count intestinal tumors.

I've been on this mission to not let whatever these doctor inspired 'educated guesses' that are attempting to take over my life, not take over my life. I'm really working hard to ignore the fact that I'm actually really effing sick, instead I am marching full speed on with my life in this senseless stubborn brattiness refusing to succumb to the absolutely immense weight of how sick I really feel. Thinking if I give in just a little, I might never again be able to get back up. And not being tough is just not an option ever really. Secretly, all I really want to do is take turns lying either curled up on my couch or in my bed, with my macbook, and the cats, softly whimpering, just enough so that I still look pretty and huggable while im crying and not a big mucus sobbing snot affair, and maybe I could say something heartbreaking and kind that would cause whomever was watching to tear up a little also, and for a moment they would really understand the injustice that comprises the brutal senseless shit that really great and A+ people like me have to endure.

This secret fantasy decidedly does not involve straining at a microscope, attempting to walk, attempting to joke around, attempting to feel bad for someone who thinks their cold is killing them, attempting to care about anything really at all, and constantly telling everyone that I am perfectly capable to be carrying out the way that I am. I am so done with this facade of oh guys im not really that sick routine, sure I'll run here and there and take care of all your trivial needs.

So this morning, I was almost relieved to wake up with a bowel obstruction knowing that it would land me back in the hospital where I can finally take a few days off to rest and be the recipient of sweet sweet dilaudid - the wonder drug that cures all my mental and physical ailments in convenient 2mg 2 hour installments. Especially convenient this morning was the small bowel study I had scheduled for 9am which would certainly hasten the process of being admitted. Arriving in the basement of the women's hospital sufficiently comforted by maybe too many percocets, I eagerly told the technician that I was suffering from certain bowel obstruction - as to which he looked at me, practically skipping down the hallway with glee, with complete skepticism. Four very lousy hours of laying on a metal board later, percocets long worn off, I was finally declared blocked!! I was thusly whisked upstairs to the GI clinic where I was further whisked into the supreme comfort that only dilaudid can so whiskingly whisk into one's veins in a very mere and modest 2 mLs. I was so relieved I would finally have time to get some R&R at the excuse of being bed ridden in a hospital, where I pictured myself thumbing through magazines, leisurely watching daytime tv, chatting with the nurses, sun shining through my windows, god reaching down and pushing my dilaudid button for me....yes it would be *gloroious* -a real break where I could be sick in peace and whimper pitifully (but keeping it delicate and poetic).

so. yeah. I sure as hell got the eff what I wanted. This was last Wednesday. (I am typing on Friday, like 10 days later Friday, like, two episodes of lost later, like, 10 GIGANTICALLY LONG ARDOUS MIND KILLING DAYS). The doctors decided I needed more surgery (kind of saw this coming) - buuuttt, its mostly a minor two hour affair they promised, we'll just tidy up a few problem adhesions while we share warm stories of past xmas parties over my comatose body kind of blase run of the mill procedure.

Six hours later I wake up in some ungoldy agonzing pain where my surgeon declared my abdomen an absolute brutal battlefield and it was unheard of that anyone could possibly form that many adhesions post operativley in just two months. Well. I am a fucking miracle guess what. They were really impressed with the complete and utter mess of networked tissues that I had formed. So being a long and complicated surgery, I have been in here for a long and complicated post op stay - and I really just don't even know how I make it through each minute anymore.

The complications range from persistent fevers topping out consistently at 104- 105, profuse vomiting, where they eventually shoved an NG tube down my throat to cease said incessant vomitfest (Read:lubed a honking peice of gigantic pipe, shoved it down my nose , threaded it through to my belly, and have been sucking out my stomach contents that don't look so very unlike what one would find in clogged gutter detritus- cockroaches, wet leaves, dead spiders, that frisbee I lost when I was 9, etc - fascinating to watch though) ANYWAY. I would now like to continue on complaining on the subject at hand. The pain is monstrous, the back pain from laying in this bed is unbearable, I have swollen body parts that are hideous enough to make children cry, I had an internal catheter installed in my arm that travels to my heart yesterday, a sort of - permanent IV so they can feed me food via TPN b/c I haven't eaten a non vomited up food substance in over a week, two blood transfusions, and a ppaarrttrriiddge in a peeaarrr treeeeee.

The doctors still don't really have any consensus as to why I'm having all of these complications. They have a lot of ideas, but I have yet to see where they are logical, effective, and most of them don't even get acted on - I mostly think they are amused watching me rot here in this bed (they make their rounds at 6am to boot).

So, instead of having my hoped for little teary eyed sessions of 'man guys this is kind of the pits' cutesy cries, I have been having heaving pillow soaking gallon snot producing attacks....usually these are followed by my jamming on my dilaudid button waiting to become mentally comatose again. I have flipped through no magazines. I'm cranky to the nurses. The TV blows. I still can barely walk. My belly still fucking hurts, my head is positioned by a gigantic fucking window so I can remind myself daily that I'm in prison. My IV pole grows larger everyday, no literally they put a new piece of equipment on it like everytime I turn around- reverse nurse Jenga, honest to god. and having to unplug three different pumps, my ng tube, wrap 6 wires and my pain pump, everytime I want to walk 6 feet to the bathroom is RIDICULOUS. Then haul all that shit over to the sink. Pick at some new pimple. Get all the way back to bed, hook everything back up. Climb in. And then realize. in horror. that I forgot to wash my hands. I may or may not rengage in a crying jagg that my neighbors can hear. But I think tears are good for sterilizing or something?

Now I fantasize about being back in lab and having a grad student gracefully float into my bay with a box of Dunkies and saying Lisa I picked out your favorite, and also, I have just a few samples of intestine if you wanted to count them? and her eyes would twinkle. and my eyes would twinkle. and we would share a doughnut moment while gazing at one another, endulging in silly light hearted tales that would cause the people overhearing to smile and shake their heads. and I would tell her I would be delighted to count tumors as I loving licked the chocolate icing from each of my nonswollen, non bruised, unfinger pricked, unscathed, hand washed fingers. And I would walk down to the scope room, with a little whimpering cry, and it would look pretty, and genuine, and the sun would reflect just right off my face - and the tears would be for happiness this time, because I just ate a fucking doughnut and its not causing me to double over and writhe around in agonzing pain, because IM LIVING LIKE A NORMAL HUMAN BEING DOES EVERYDAY. except I won't be taking it for granted. suckers.

I.can't.take.this.anymore.