Tuesday, May 24, 2011

down in the boondocks




It's kinda hard to type with this monitor thing on my middle finger.

I'm in the ICU getting desentitized to Fortaz. I totally balked at the idea of coming into the ICU, but it's been great - as great as hospitals can be anyway. I mean, I've gotten my meds on time, my RTs were quite knowledgable about CF, and I slept all night - at least until my nurse woke to tell me by BP was 77 over I dunno what. I think it was a fluke. 77! Makes me wonder WTF happens when I sleep at home! Well and I've got all these damn cords all over. Still, I'll take this over the Oncology floor where I was before n.e. day.

So 10-14 more days of IVs is coming my way, but I'll deal. I want to feel good for our vacation which is rapidly apporaching.

That's about all u have to say. I want to go home!

Thursday, May 5, 2011

I lied. Reaccessing today for 4 more fun filled days of IVs. Boo. At least its just the one m
ed, right?

Wednesday, May 4, 2011

this is the end, beautiful friend, the end

Today has been a day of endings.

I finished up my last dose of IV Tobra about twenty minutes ago. This is the only time I have ever been on just one IV med and man, is that cake! I am also on inhaled colistin, so it's not like I am on only one med, but still, one infusion BID = sa-weet! So that's done.

That's not all as pie in the sky as I just made it sound, since this was an experiment to see if it would help me before I need to go in and get desensitized to meropenum. er, I guess it's Imipenum. Either way, I haven't heard much good about either med, so I am not really looking forward to that and honestly, I only feel maybe 70% better. I got a stomach virus in the middle of this course of meds that left me with a 102 fever, vomiting, and all together miserable. I feel that it set me a back a bit. Once the fever edged over 100, my heart started beating really hard and my breathing became very labored. I was acutely aware of this, much as I remember I was with H1N1. There is just a point where it seems that my body really begins to struggle with fevers. Maybe everyone's does, I just don't have a whole lot of experience with fevers.

I was thinking today as I was infusing my last med about where I am with my health. In 2007, I weighed 103 lbs and had an FEV1 of 50%. I did no treatments up until that point. Well, no, I guess I had my Vest, because I know I got that soon after my daughter was born. I remember because my boobs were full of milk and it hurt to Vest at first. But anyway, a year later, that's where I was. I feel it's entirely possible, had I not changed that road I was on, that I may not even be here today. Who knows where my health might have been and then to have suffered through the Swine Flu epidemic? yipes. I feel certain it was the grace of god and lungs that cooperated that that didn't hurt my body worse than it did, and I know I lost some lung function over that.

Anyway, I guess that's neither here nor there because I did get compliant and I am still here and I do have a baseline that now hovers around 70 and that is terrific. So I have to remind myself when I reeeaaaalllllyyyy don't want to do IV set #2, complete with some hospital time, that that's just how you have to play this game. If i want to be here for a while longer, I gotta play these cards right.

I really want to be here to see my kids grow up and have kids of their own. I was reading a book to my daughter tonight about a kid that got an ugly knitted sweater from his grandma and I felt deeply how much I want to share that part of life with my kids. It's a realy hard pill to swallow that I might not. Sometimes I can get kind of flippant and even obstinate about it when my family spouts off uber positive thoughts about how possible it is for me to live for a long time more. I feel they are deluding themselves and need to realize the stats are not in my favor. But the truth is, the deep dark truth, is I really would like to be around for a while longer. Facing your own mortality is not easy. I know I am still far enough removed from dying that it solidly remains a "what if" idea. Many people I know are already in end-stage lung disease and I am sure their outlook and wisdom would greatly differ from my own.

I'd come up from the basement earlier tonight when I realized I left the phone down stairs. I asked my son to bring it up to me.
"I'm too tired to come back down" I told him.
"From your thing?" he asked, pointing to my chest. I said yes, that sometimes what's meant to make us better can wear us down a bit first. He called back up the stairs that he hoped they would find a cure soon. This is my son. Somehow squashing my parents' optimism about a cure doesn't seem as unkind as doing it to my son. So I called back, "I don't know that there will ever be a cure, but hopefully they can find something to help me live a long time." By then though he was already immersed back into his Xbox game and I was feeling a little blue.

I digress.

Another ending came as I finished up teaching my 3rd semester in the world of higher learning. I had a failing student complain about me and my "unfair" grading policies to the Dean of my department. She called and asked me if I would be willing to let him take his final exam again. I really debated this. It seemed if I said no, the likelihood of my rehire was small, being an adjunct low on the totem pole. At the same time, I have been trying really hard to be more of a stick-to-my-guns kind of person. What it finally boiled down to was that though I thought that this kid was acting like a spoiled brat, he was entirely capable of doing the work. So to be punitive and fail him based on bureaucratic rules would really be a bit asinine and would probably keep a bright (but slightly annoying) kid from doing something positive with his life. So I let him retake it. It kind of botched up my evening since I had to go in just for that, but he did well and passed the class. So he's done, as am I, for the summer.

I really enjoy teaching at this level. It's pretty unlikely that I will ever go back to full time school teaching, but if I ever do, I am totally holding out to at least get a position in high school. Or even night school, GED. I mean, my dream was to be like "Dead Poet's Society" or something, but it seems I always get thrown in with the lower echelon of studetns, be it skill level or SES or what have you. No matter why, they've sort of become "my people" and I feel I do well by them. So I hope I can continue at this for a while longer.

Finally, in the end of days, I sent my entire master's thesis to my director today. That consisted of 63 pages of narrative and 15 pages of literary context. It took me almost a year to finish it, partly because that's how long it took me, and partly because I had no deadlines and I am working with a very over worked faculty memeber who wasn't always quick on returning my emails and drafts. I am still waiting for her reply, so I may have to edit and revise a bit more, but the bulk of the work is really truly done. Thank goodness! It's such a weight lifted off of me. I will actually get this degree. For a while there it seemed as if it might not happen.

With all that, I leave you with pictures. I just got a new computer and I have a built in camera (so yay! Skype!). I'm only about 10 years behind the rest of the world with my technology. I was just playing with the camera this morning and then again after I finished infusing my last dose of the Tobra.

Enjoy my kewpie looking pictures. (I'd rather be Kewpie looking than Ewok, thank you very much!)











Wednesday, March 23, 2011

she's a good hearted woman in love with a good timing man

I love me some "old" country. I use the term "old" loosley, as I mean "old" as even up to the nineties - before country became the top 40 popular, trendy genre it's becoming now. I mean, I saw Faith Hill at the 4H fair in about 1996 long before Faith Hill was known for much of anything. And that's not to say I don't occasionally hear a new song that I like, it's just that tunes such as "Honkey Tonk Badonkadonk" or "She Thinks my Tractor's Sexy" just don't pull on me the way a little Hank Williams, sr. or jr., can or the way Crystal Gayle singing "Don't it Make my Brown Eyes Blue" does.

As a kid my dad used to listen to country music when he'd make us lunch. This was when I was really young. My dad made this sandwich called a "veggie special" in which he took a piece of whole wheat bread, spread some pizza or spaghetti sauce on it, put a little wheat germ on top of that, added some frozen mixed vegetables and then topped it off with a slice of American cheese. Into that new contraption called a microwave it went, and yum yum.

My parents were newly divored and though my dad was definitely the more health conscious of my two parents (hence the wheat germ. We also ate carob, weren't allowed gum with sacchirine in it and visited the Mekong Market where he bought little glass vials of ginseng which he called "Kra-teen Daaang" (sp)), he wasn't as much of a chef as my mother. As we sat at the table and waited for him to make the veggie specials, he would turn the little radio on in the kitchen to an AM country station. I can still hear him singing "Texas weh-eh-men" in a low baritone.

My dad introduced me to a lot of different types of music and for that I am really grateful. He did his Master's thesis on music ethnography in which he wrote about the blues. I assume thisa was when his vast study of music really started. The music of my childhood ranged from the reggae beats of Bob Marley, Peter Tosh, or Burning Spear to the wailing guitars of the Kings: B.B., Freddie, and Albert. Some days it was the jazzy sounds of Gato Barbieri, Wes Montgomery, or Miles Davis. I heard the bizarre sounds of Sun Ra and the melodic Augustus Pablo (I wanted to name my daughter Augustus or August if she was a boy and call her Gus. Augustus was influenced by melodian player Augustus Pablo and August was influenced by the Grateful dead song "Wharf Rat": "My name is August West and I love my pearly baker best more than my wine")).

My dad was a big Beatles fan so there was no shortage of them or the Rolling Stones or Cream and other music of the sixties and seventies. Other names that come to mind are Bloomfield Cooper and Savoy Brown, Leon Russell, Santana, Howlin' Wolf, and Charlie Parker. I remember on Friday nights we would go to dinner and then rent a movie (the VCR was also a new thing at this time). We watched Movies like "Bird" and "Crossroads." Clearly, my childhood musical education did not suffer. My dad was making mixed tapes from his record player waay back in the day. And so, in the afternoon we'd listen to country music.

When I met my husband he introduced me to a new subculture, one I had not really been privvy to in my middle class (maybe even upper middle class? I'm not sure where the class lines divide, really) upbringing: that of the "working man."

My father was an academic, my mother in social work, and my step mother a physician. My grandfather was Vice President of an Insurance company on one side and the other worked for a short time as a Foreign relations represenative for a local company that made materials used in WW II. That grandfather was from a small farm community rife with Amish called Nappanee. So for all our "worldliness" (my grandmother was the daughter of a diamiond cutter and grew up in South Africa) there was always that tinge of good old farm folk within us. Still, I knew relatively nothing about the world of the skilled trades and construction. My knowledge of construction was basically the stereotypical guy eating his lunch from a metal box sitting up high on the beam of developing building and whistling at women as they passed the site. G showed me that most of what I sterotyped wasn't true and I found great comfort and happiness with his friends and family. It was an easy integration of lifestyles and we found enjoyment on both ends of our spectrum.

G came from a family of brick layers. His grandfather, father, and both brothers were in the trade. G branched out and chose plumbing/pipefitting rather than bricklaying and much of this was due to the training he recived when he was in the Navy. His maternal grandfather had also been a Navy man though I don't know what career he had after that.

When I met my G I wasn't just introduced to this "blue collar" world, but along with that some new music. I started listening to Waylon and George Jones, Hank jr., Lynrd Skynrd, The Allman Brothers and The Marshall Tucker Band: Outlaw country and Southern Rock. It wasn't that i didn't know who most of those musicians were, only that I hadn't really listened to them. My dad had once forced me as a teenager to go and hear The Charlie Daniels Band one year when they came to the county fair. "It's Charlie Daniels, man!" he exclaimed. "You can't miss an opportunity to hear Charlie Daniels. I went reluctantly, but groused the whole time.

By the time I'd met my husband at age twenty three I'd formed my own musical taste, influenced by my upbringing and incorporated with my own preferred styles: folky rock, alt-country, and folky punk.

On one of our first dates my (not yet) husband and I went to a concert to hear Deep Purple, Ted Nugent, and Skynrd. Though not much of a fan of Nugent and Deep Purple, I really enjoyed hearing Skynrd. It wasn't the original band, but at that time there were still three of the original members. I'd been listening to quite a bit of classic rock in the time before I'd met my husband and had taken quite a liking to the Eagles and Bob Seger. My husband had a motorcycle when we met and Seger especially seemed to go hand in hand with this new guy: my pipe fitting Harley riding (soon-to-be) husband and this very exciting new romance.

After a few years together and my husband and I getting an ipod, I really took to the outlaw country. He had a lot of CDs I had never even heard until they were downloaded into the itunes. These songs were of hard working, hard drinking men and their tough and loyal wives. I felt as if G and I fit right into the mold of the stories told in those songs. Especially after out daughter was born and I was no longer spending as much time outlawing it with him as I was home with our baby. I truly felt I was becoming the like the women who sang and were in the songs.

The sad thing is, as much as I enjoyed it, I can't really listen to that music much any more. It has become too painful. I don't want to be married to an Outlaw and I don't want to be a woman who is singing about fighting for her man. It's funny that Hank Williams jr.'s song "Women I've Never Had" used to make me smile. Now it sort of makes me sick. "Jackson" makes me angry. Hearing "Whiskey Bent and Hellbound" is liable to give put the urge on me to put my fist through something much like Loretta's, "Fist City," though I can't listen to that one much either. Willie's songs still pull on my heart strings but they hurt too. I don't want to be the good hearted woman any longer.

I've been searching for songs that speak to who I am and where I am right now. As a teenager I used to play a game where someone would give me a word and I would come up with a song lyrics to go with it. I always said "life is a medley." Nowadays my motto has been more "music is god" and I've taken to letting the shuffle on the ipod teach me whatever lesson I am supposed to learn for the day. I'm trying to believe that things happen as they should and that I can only control so far as the end of my nose. That's left me adrift in the musical world. Despite all the music I've been introduced to in my life, I can't find a fit right now. I don't quite see myself heading into the Chritian rock arena though I suppose a song called "In His Hands" could work for me if it was perhaps renamed to something like "Wrapped up in the Energy of the Universe." and I bet that song exists somewhere too, though it's probably being chanted by a bald New Yorker who dropped out of Julliard to live in a Indian Ashram while his grandmother paid off his student loans for him.

My point about the music may have been lost, but what I'm trying ot say is that I am adrift right now and I am looking for an anchor or an identity. The previous nine weeks have made me reevaluate who I am, what I believe, and how I see myself. I can't find a song to identify with right now.

I am starting to believe that there is purpose in life that isn't always obvious as events are unfolding (maybe I always believed that, but it seems really obvious to me now). I'd like to think that my days spent as the faithful Outlaw wife had meaning and that the catastrophe that unfolded around me two months ago might just have been the answer to my prayers (and how fucked up is that anyway? if everything happens for a reason then the universe is one ironic fuck up of a place). If this is true, then I hope at some point I can listen to Waylon and Jessi singing "I ain't the one" again without breaking down. that I might once again enjoy crooning along with Hank about my wild friends that have settled down because I will be one of them. I may not identify in the same way with the music, but I won't have to shut it or certain parts of my life out of my mind because of all the hurt.

I'd like to imagine the broken pieces of my life settling into a compact pile of debris that's busy making diamonds under the pressure. If life happens as it should, and I can imagine a celestial hand holding me gently through it all, then I know every time things seem the most dire I will be eable to unearth one of those diamonds and find the beauty that comes from disaster.

If it happens as it's supposed to, then I can still hang on to Willie crooning, "If you had not fallen then I would not have found you, Angel flying too close to the ground." and all will not be lost with who I was but only that more is to be gained with who I am in the now.

(I totally apologize if this isn't all that coherent. I've worked on it off and on all day amid interuption after interuption and I just want to be done with it - so off to the internets it goes!)

Friday, March 4, 2011

I heard the news today oh boy

Yesterday my husband and I did a "Day in the Life." Well, mostly I did it, but he was in on the gig. I noticed a few main things while looking at the pics I was going to use:

1) my son is missing from all pictures. I think this is mostly because he left for school before I got up, he came home after school and immeciately went to play with his friends, and then when he was here hanging out, I was busy grading papers and the like. Anyway, sorry mijo.

2) I had clinic today which I took no pictures of. I felt wierd going in to my clinic and snapping pics. I was going to take a pic of the outside of the bulding and a few inside the exam room, like of my sputum cup or something, but I forgot. So I snapped a picture of my PFT print out when I got home. (FEV1 was 72 and I hadn't even done a treatment yet that day, so that's great (though 25/75 was 26, so clearly there is a big discrepancy there and that's where the treatments are really making the difference (the highest I've seen that in years is 39 and I think that was post IVs)).

3) I went out and had a cocktail with a friend and didn't snap any pics there either. It would have been proof I actually do have IRL friends! I'm not the cyber loner I come across as. :) I'm just a picture loser. But she doesn't know I have this blog and I wasn't ready to explain it yet (she does know I have CF though), so just enjoyed my "pom peche" martini and let the camera rest.

Point being: lots of holes in this DITL, so I guess in a way, it isn't represenative of my life fully at all. C'est la vie, n'est pas?

oh, and 4)I might have a broken nose. The baby I sit for head butted me last week. You can see the line where my glasses hit against my face and my nose is pretty swollen near the bridge. It's ooogly. I surely wasn't thinking this was going to be my most beautiful day when I decided to do this DITL!


Gregg is up and getting ready to start the day's project while I take Miss M to school: tamales!


Miss M busted trying to feed the dog cheerios.


This is how I look in the morning. With a busted face. sca-wee!


Off to school!


Picking up cumin, chili powder, black pepper, and some candy (not for the tamales, for mah belleh).


corn husks a-soakin'


cerdo tirado!


We had to set the tamale makin' mood


sneaking a pic of my man lathering up


picking up Miss M from school. I think my car needs a wash.


Nothing sweeter than seeing the preschoolers coming out of the school doors. Melts my heart everytime.


cleaning up puppy pee. When will he be trained??


My girl


Posing with my tamales before devouring more than I want to admit to


Hot tamale baby! Who knew food would be such an important part of this day?


PFTs


Gregg and his pup


The pup. Gregg took this pic. He is a far better photographer than I am, but I can't get the camera into his hands enough.


Trying to get Slugger to wake Marls from her siesta


"I don't wanna get up!"


The dog says, "Why do you people always make me do the dirty work?"


Back to sleep for a bit.


I told Gregg to take a picture of me that captured his love for me


This is it: the picture of love.


My chores. Laundry. I don't mind putting it in the washer, I don't mind taking it out. I HATE folding it, and I ABHOR putting it away. Give me a toilet brush any day, seriously.


Getting ready to have a cocktail with a friend Hair down?


Or up?


The meeting place for the alcoholic debauchery.


I came home and Gregg and his friend were watching youtube videos. The friend pulled up some beheading clip. I told G not to watch it. I told him. He watched anyway and was disturbed and upset for the rest of the night. Sometimes I have to say it: I told you so. I did not watch nor listen to such a video. Just thinking about it makes me ill.


Face washed, contacts out. Back-to-normal Shan.


Trying to get a pic of nekkid G. Undies are close enough. He might kill me for posting this. It may disappear.


good night moon. good night dog.


scrub a dub dub


Gregg and I taking a nighty night pic


I told him we should make out in front of the camera


we were laughing about this and I started to cough when he went to take the pic so I covered my mouth - partly out of polite habit, partly because I didn't want an ugly red faced coughing pic on here.


I told Gregg to kiss me. This was his reaction.


Got him to smooch me anyway. <3

Wednesday, February 16, 2011

and if you're somewhere out there passed out on her floor,Oh, Joey I'm not angry anymore

"if you believe that feeling bad or worrying long enough wil change a fact, then you are residing on another planet with a different reality system"(Dr. Wayne Dyer, Your Erroneous Zones).

When should we detach? When we can't stop thinking, talking about, or worrying about someone or something; when our emotions are churning and boiling; when we feel like we have to do something about someone because we can't stand it for another minute; when we're hanging on by a thread, and it feels like that single thread is frayed; and we when we believe we can no longer live with the problem we are trying to live with. It is time to detach!...A good rule of thumb is: you need to detach most when it seems the least likely or possible thing to do (Beattie, 65).

I've understood the practices of quieting the mind, detaching, watching the thinker etc., for some time. I even fathomed that maybe I was slightly enlightened about the world because of all the knowledge I had. The truth is, I know nothing. I have truly been humbled by the recent events in my life. I've never been one to serve up platitudes such as,"It all happens for a reason," or "God has a plan," but suddenly I feel like perhaps I can abide by the idea that there are no coincidences.

I suppose in any time of our lives when things seem deep, dark, and dire, we try to search for some sort of meaning in it all. Isn't that what Viktor Frankl wrote about, Man's Search for Meaning; from the murkiest of places we can find some sort of salvation (and I don't mean that in a complete Christian sense, but whatever floats your boat)?

So here I am, clamoring out of this fucking hole I fell into and I am searching for some sort of meaning in it all. My mind constantly bubbles with "what if," "if only," "I should have," and "why why why?" This thinking is getting me nowhere except for more mired where I am, stuck and miserable.

So the idea of detachment is one I am trying to get into. And in that, I feel that I need to start learning how to let go of fear. Once I am able to quiet my mind for just a few moments (not easy), I can actually see, smell even, the fear steaming out of me. I live and breathe it. I have often believed if I was diligent enough with my worry that I could "protect" people. I had to be diligent, because one failed moment of forgetting and BAM! something awful might happen. DOes this make me sound nuts? Well, I think maybe I am.

It makes me cry when I type this that I feel I've found the place for answers. The least likely place (I thought). Alanon. yup. My mom convinced me I might just give it a go, and I did. I walked in the first night ready to spew the story if my vile fucked up life all over everyone there. I wanted to feel better about my fucked up life because they all had a fucked up life too. and they did. so many of my feelings were validated: wishing death on a person (now you've seen my true evil nature), driving down the road and thinking of never going home, blaming myself for every little thing. Except, some people there no longer saw their lives as fucked up, even if they were living in an active alcoholic home (which I am no longer. Mi esposo tiene one month sober!). They had discovered ways to live with some medium of peace despite. Not without struggle and work, of course, but achievable.

I was raised Episopalian though I officially stopped declaring myself Christian around 2001 when my step sister was killed in an accident.

When I look back at the major spiritual struggles I feel I have faced in my life, I see three. Two followed a death and the third, this most recent also follows a death of sorts - the death of the life I thought I knew before January 14th of this year.

In 1994 my nine year old cousin was killed in a boating accident. At the same time I had a pretty good relationship going on with pot and older boys. Lots older sometimes. After my cousin died I started to fear for my own mortality. I spoke with the priest at my church, began to read daily prayer books and really immersed myself in the faith I was raised in. At the time, this broght comfort and - meaning.

Then, right before my sister was killed I'd begun to study yoga and more "new age-y" teachings. I looked into the ideas behind cosmology and quantum physics, the Gnostic bible. I could no longer blindly believe in "god" as I knew it. I had never, even as a child, been a big Jesus person, but always had (and still do) believed in God. I just started to change my ideas of what god meant. I wasn't sure where I saw meaning any longer, but I knew I wasn't finding it in the pews at the church I was raised in. This lasted until recently.

I have not changed my idea of god. I haven't started bible thumping or anything or the sort. I have just allowed myself to believe that my god might actually have the ability to control things better than I can, so why not give up the fucking fight for a while and try to relax?

I cannot change ANYTHING - what happened in the past and what may happen in the future. I don't mean this as complacency, and this is somewhat of a new uniform I am trying on here. The ideas behind AA and Alanon are a nice combo of the religion I was raised in mixed with the principles and practices I found worked for me when studying yoga and other Eastern spiritualities.

So I won't start prosthelizying (sp), I swear! I am not some serene person walking around praising god and letting the universe lead me where it may (at least, not yet). But I want, want, want nothing more than a little bit of inner peace. I am exhausted by living right now, but not ready to let go just yet.

All that said, I have one confession to make. Should I stumble upon a certain someone before my metamorphisis is complete and my anger and rage have subsided, I am going to hock a green pistachio CF pudding loogey on that bitches face so fucking quick she won't know what hit her pretty litte bitch eye. Well, maybe I wouldn't. But I enjoy the fantasy.

so yeah, there is still work to do. :)

Sunday, February 6, 2011

only broken hearts can sing

I have a new reader. Someone very special. I can't say how thrilled I am with that. It's the smallest of things that often mean the very most. Thank you; thank you for seeing it was important to me and caring enough to take a peek.