151

I am again sitting on the edge of my bed typing with two fingers on a poorly balanced IPad. Outside it's muggy and hot but I haven't been out in days. I exist in a twilight state that demands I sleep when I'm able to catch it. If it lands upon you, lucky soul, just lie down where you are and prepare for wonder.  The other night I coughed from 2am through Noon. Ephemera of the genus snot has pored out of me. Gunk of the genus lung in equal measure. You just have to take it, work through it, don't freak out. That gross you just coughed up looking like a snot web is better off outside the body.

I named this post 151 because I usually like to note events of importance, and I think the 150th post is, but that poor screed was written with a temperature of 102 and raging diarrhea that threatened to turn me into a raisin. In the hospital I had a bedside commode which is a fancy name for a very large bucket with a lid attached to a frame. It beats a bedpan by a mile, but you have to be able to get out of bed to use it. A nurse will help you if you want but come on...let me lose all my dignity a bit more slowly than that. 

In the latter days of my stay I began to be more insistent about not being awakened for ridiculous reasons, and the last few days I actually slept a few hours. The midnight, 4am, 8am, vitals checks excepted. No one escapes that. 

No one escapes hearing, too, "that's my job, I'm required to..." Or "our protocol demands it." You will hear this nearly immediately upon asking any question of why a telemetry tech performs maintenance on your heart monitor at 1am, shaking you awake in a dark room while screaming your name (I threw that one out of my room. Her response? "I'm just doing my job.") Ok, bitch, my job is shitting in this bed. I'll get right to it.

I don't know that Bloomington Hospital, proud palace of the IU Health system, is just another corporate monkey idly tossing its feces against a display window of "customer service".  I am, I'll have you know, until I don't want to give blood at 2am. Then, fuck me, it's protocol time! 

This was different from my two day surgical recovery in a private room. Those first horrible days spent waiting for a room to open up with a mumbling Alzheimer's patient 5 feet away-- I felt awful, that was just the portal to hell. Oh, and there was a truly special nurse named Patti who told me on my second day that if I didn't get up I was not participating in my own recovery. Bitch, I can't breathe and have no energy!  I hope there is a circle and a hell, and an everlasting fire with her stupid bitch name on it. 

Being home has its own challenges.  My bed doesn't adjust and I really need a new mattress. The house is being painted so there's more noise than usual. I walk more, but now is the time to participate. I feel myself getting better but in tiny little steps. They tell me I have two more weeks to overcome the infection and past that, one has to regain weight and try to climb the hill again, muscle tissue ravaged for the third time. No one gives you a map for this because they simply could not.

And that is why I want you to know this is post 151.  Fuck not winning.  

OK, I Surrender

I had planned on seeing my niece Anna for her graduation party in Columbia City. She's off to college in the Fall, the 2nd of our family to go for a Bachelors. You already know the first.

My hometown is a rather boring three hour drive away, and Charles and I planned to go, visit and return, so that he'd not miss work on Sunday and I'd not have to stay away from home, where I know how everything is laid out, where it is, what to do with it. Love my family as I do, I do think I would never stay with them. There's something I like about not knowing some things; whose bathroom is filthiest? whose guest room is an inflatable on the floor;

I knew given the 6 hour round trip in the car that I would need to feel as close to perfect as possible. I didn't wake that way. I woke at 4pm on a coughing binge that proceded until the early afternoon. I had progressively more difficult breathing--but, believe or not, these things have happened before. I didn't see how badly it would go.

It became obvious by mid afternoon that this was not ordinary coughing jag, and Charles started asking me if I wanted to go to the hospital. Given the seriousness and hatred with which I view  any trip to the ER, I waited to flip the switch; this had happened before and resolved itself before.

Finally around 6:30pm I could see my old failsafes had done the previous and eschewed the latter. We went to the ER where I was stabilized and they began to unravel the puzzle. That's how, when I was done, I went from citizen to indentured servant of pneumonia.

No illness that I know of is fun to have, but pneumonia scrapes the bottom of the barrel. Raging fever, , terroristic acts of diarrhea, strange sadism for watermelon.

That's how, last Friday, I was sent to serve my sentence in Bloomington Hospital, where I am right now. How much longer we all ask? I don't know. I can breathe, but the pneumonia that chose me
is MRSA pneumonia, and no one wants one of that walking around.

I've been on scads of medicines as they try to figure out the angle by which to fight this, and I am pretty rough geography for virtually any fight right now.

I spent my first four days in the Progressive Care Unit, which sounds like a great idea, but nothing that happened to me there merits either Progressive or Care in their titles. The room was cramped, and semi private. My roommate was an old man who, when not shitting the bed, was having alzheimer's inspired conversations with the fairy world he lives in. I felt sorry for him, but desperately wanted sleep.

Sleep, though, seems to be the last thing anyone wants.

I want to know:  Did you know they wake you at five to weigh you?  YES, weigh you. No other reason. They cycle through every four hours,  taking the same set of vitals, feeling the same pulse, and his doesn't feel like care--it feels like harassment. As if you were too butt-ass stupid to tell them that you felt something had changed. Then there's the random stuff that happens at night--the crash of something dropped,  A hospital is the worst, and the dirtiest, place to sleep.

But with MRSA? Private room. Isolation. Works for me.

I don't know when I will be released. I feel better, but not whole. I am tired and awkward, and a bit defeated. I miss my dog, my bed, knowing where everything is, coffee, the porch, my rocking chair and a good deal more

I'd say more about the general poverty of this experience, particularly the hospital, but I realize it does nothing to overmoan. Suffice it to say that as healthcare and medicine continue to generate big profits, administrators will--in order to protect profits--encultureate reactive models of service that while touting customer committment, will only make up wonder whose ass they stuck their head in.

If you sent me a facebook message of late, I may not have answered. I just honestly felt that badly, about as much as I do of poor etiquete.  Thank you, hope to see you soon.

What Happened to 2015?

At the turn of the year, this year, I was ebullient with optimism. It's all in black and white. There's no denying it.

I encouraged my pal Sara to put her faith in the arbitrary date change too. I feel badly about that.

2015, what happened to you? Sure, I got rid of a chest tumor, a spewing ugly mound of organics that only a cancerous mother might ever love. I constantly remind myself of how awful that thing was, and how it was flinging cancerous cells throughout my system like the confetti at a "Kill Mark" party. This was truly a good thing.

I balance that though with the fact of this arduous recovery from surgery, how old I feel, how much zest seems to have been cut out of me. I balance it with a weepy graft area, an open wound where the graft failed a bit, the home health nurses, people looking at me, assessing me, poking me, touching me--ugh.

I balance it against the fact that I haven't walked Rally in months, and I miss that.

2015 has been about struggles with corporate America.  No matter how many times I tell a company, a medical billing office, any entity, actually, that I can't speak the less they believe it. Or they believe it to such an extent that they won't contact me, or help me, at all. Never lose your ability to speak, because America is way too stupid to help you.

I've had an arduous time this summer just getting warm. I am fully a cancer patient, I am forever cold. Air conditioning is killing me. I loathe it just as many of the offices where I see doctors are ramping it up. Heat combined with humidity is indeed unpleasant and difficult--but is the answer to set the room temperature in the 60's? I go everywhere with my old heavy lumberjack shirt or my fuzzy birthday sweater (as good as panda pillow, Katie).  I still sleep with an electric blanket and I love it. Try to pry it away and you will not like the results.

I've encountered boredom for the first time in a long time this 2015. Just typing that makes me shudder. I've long had utter disdain for that stupid phrase, "I'm bored", so hearing it out of myself is a shock, but a true one. It is hard to get past recovery to enjoy a book, or a show on my Ipad, It is actually work to sit at the big computer and play those distracting games. I have Netflix, Amazon and Hulu at my command but I finally ditched Hulu. Straw that broke the camel's back? putting commercials on a 1980 BBC production of "Pride and Prejudice" (an epically bad production). Please. Go away and monetize to someone else.

I am aware that some of these complaihnts are pretty Firt World and some of them are a bit personal to apply to the flow of an entire year. it is time, though, to call it out: 2015, you've sucked long enough. You have five months to get your act together. Do it