271) Sleeping Fingers

August 21, 2008
Thursday

Morning: We are in Fredricksburg for an overnight end-of-summer vacation and yesterday we drove out here stopping at every antique shop, crafts place, gallery, and artist's from Iceland's ranch. The highlight was meeting an 80 year old artist from Iceland: Eyfells*; and we spent some time letting him show us his work, his wife's large portraits, and his improvements on the property and plans for the future. We shopped, bought little things for the house, and ended up at the hotel pool, swimming.

We went to eat at Navajo Grill** and found the food quite good, but a little on the high side for what you get... but still worth it for the beautiful outdoor patio with acoustic western music. See Jack's Restaurant Report in Notes section.

We drove back this morning in time for me to go to a Dr's visit with Joseph Leary, my nose guy who cauterizes my telangectasias*** when they get out of control every few months. This time he found three little spots to zap and I was on my way in about 15 minutes.

El Milagro: I am late today... just can't seem to drag myself away from the home front when I am vacationing and doing little home piddling things. Imagine, not being excited about going to dialysis... So, I finally drive out of the driveway at 4 and get to the center about 4:15, wait until they call me in at about 4:30 and Big Daddy Joseph the Tech pokes me... he is getting better at this: it is weird that he just jabs those needles in, and yet he has gotten to a place where I feel the jab, but it isn't really painful. He sets me all up and I hook up my earphones and listen to ATC on NPR all the way thru the news on TV... which is turned on to the olympic wrestling and muted... but I can almost hear the grunts just by looking. I read some on my text for the fall and fall asleep somewhere in the slip of time there.

One weird thing that has happened twice now is my ring finger and little finger on my fistula hand falling asleep (see post # 263) and getting totally numb. I can play with them and massage them back through tingliness to feeling, and then within about 20 minutes they are back to numbing sleep. I wonder if this is something or just nothing. "Is it something?" I say to my self... and then I consider it and say, "Nah. It's nothing..." And then I worry some and think, "It must be something" and then scold myself and convince myself it is just sleeping fingers.

Wake up and watch most of Matchstick Men on AMC, starring Nick Cage as a person who believes, and convinces me, at least, that he has Obsessive Compulsive Disorder. Pretty good movie that I want to see the end of sometime. Not tonight though... I am done before it has reached it's cressendo and am anxious to get back to my vacation.... imagine that: I don't want to sit around here watching another half hour of a movie!

Notes: In at 76.5 and out at 74.3 kgs
* Eyfells online at www.eyfellsandeyfells.com
** Navajo Grill online at http://www.navajogrill.com/aboutus.html
*** See more about telangectasias on Wikepedia, online at http://en.wikipedia.org/wiki/Hereditary_hemorrhagic_telangiectasia
New Readers: For an INDEX, click January 2008 on the Sidebar and page down to post # 207.

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Jack's Restaurant Report: the Navajo Grill in Fredricksburg offered (Liz) wonderful large gulf shrimp with a red chile rub (Navajo Blanket), on a bed of tortilla strips, guacamole, and other delights. Shayna and I split the Navajo Steak; a flat iron steak with asparagus (me) and brocolini (her) and it was broiled perfectly medium rare and had a smokey taste, with a light red wine worcestershire reduction. The creme brule with blueberries and strawberries was excellent.
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270) The Yakky Tech

August 19, 2008
Tuesday

El Milagro: The big clouds are coming in from the west. Here the sky is still clear, but over in West Austin there is a black bank of rain coming this way. It's gonna unload anytime and I think of Shayna home alone in the storm. I scoot in from the parking lot and find the door to the treatment room locked again. I sit and pull out my Bush book... read for about 20 minutes til I get tired of waiting and sneak in as someone comes out... feeling like a neighbor's sneaky cat I once knew that would zip into the house as quick as a flash when someone opened the door. Then we'd have to chase him around while he tried to hide behind the drapes or under a couch. I zip in and wander around looking for my chair.

I find my chair and Carrie the Tech checks my BP. Rick the Tech sits down beside my chair and is yaking away while preparing to swab my arm. I ask, "Have you stuck me before?" and he acknowledges that he has and then he goes on, asking about if I've been to any good restaurants in the last week... what's my book about... what is a 'neo-con'... and continues to yak on about his definition of a 'fact', etc. Meanwhile he nonchalantly goes thru the poking process and before I can focus on what he is doing versus what he is saying, I spot that his needle stick doesn't look right.

"I do one up, one down" I blurt out. He looks up as he slides the needle into the fistula, quiping, "It's too late now!" He quickly notices the frown on my face and adds, "Its okay... it really doesn't matter..." to which I reply, "It matters to me. I always for the past two years have had one up one down." His smile disappears and he apologizes and tries to return to small talk. I'm in my head adding up all the halucinations I have about why I don't really like this new guy. He's too friendly; he doesn't focus on his tech work (with me); he is absent-mindedly teching me while yaking away about whateve crosses his mind. Maybe it is an attempt on his part to build rapport with patients. I think that if he would observe other techs he would see that when they are at the business of setting us up they focus on their work, not visiting... which, in fact, Carrie is doing with my machine while he is yaking. Maybe I'm just in a mood today... and want to be left to myself as I enter into another blood cleansing session.

Dr. Rowder comes up for one of his 'drive-bys' as Rick is yaking, and I turn my attention to him and his cadre of little assistants. He reports that he is changing shifts and so there will be a new doctor doing drive bys in September. He is suggesting that 'they' (the Doc's practice) will again be changing all of us to a new doctor weather we want one or not). I reply that I'll stick with Moritz. He introduces a new PA and suggests that she will be doing these walk-arounds too. The new dietician, whose name I forget, and who dresses 9 times dressier than Jennifer (this one has high heels that look like shiny extra-pointy alligators... regular high heels that look like someone grabbed the toe with a pair of pliers and stretched it out an extra two inches to a sharp point) and shows me my lab results which are good (Rowder calls my clearance "Excellent") except for my phosphorous going back up again (from 4.9 to 5.9). She scowls cutely at me and I shrug and guess that it has to do with cheese or something... Rowder asks, "enchiladas in Laredo?" and I reply that I haven't seen an enchilada in years... "No... it is probably nachos or snacks at the conference that week". We all agree that I will do better next time.

They move on and I settle in to setting the TV muted on the weather channel to watch the storm come over, hook my earphones up to NPR, and start reading my Bush book. I am getting bored with this book, and yet I continue with it to avoid reading my texts for the semester. As usual, I switch over to the ABC News at 5:30...

I fall asleep sometime and snooze thru the rest of my session... waking up in time for Carrie to unhook me and let me go back into my life. So it goes.

Notes: In at 76.8 kgs and out at 74.5 kgs.

269) End of Summer Sale

August 16, 2008
Saturday

El Milagro: I am here just a little late today... had to actually go to the mall! Yes, me. You see, the Macy's had their annual end of summer sale on men's shorts... which I get every year at the end of the year at one of those big department stores: 4 pairs for $27! That slowed me down enroute to dialysis. Rosie the Tech had arranged for me to come in at 1:30 today and I was at the store at 1 to get the sale price, which I read to say was effective "after 1". So there I am standing at the checkout counter with my four shorts at about 1:10 and the sales guy tells me that the sale was BEFORE 1. I say, "No. Look at the ad." and he proudly replies, "Let me show YOU, sir". and he shows me that it says "SALE, bla bla bla for 5.99 a pair bla bla...and then written below is After 1:00 pm. on sale for $16.00." Well, I immediately claim old guy stupidity, misrepresentation on their part, and then beg for the sale sale price. He shakes his head and rings it up and voilà; it is still in the register at the sale sale price. So I am a happy camper zipping outa the parking lot and up the hill to El Milagro.

I get called in (they still have the closed door policy ~ and yes, Kim the Blogger Tech [asthepumpturns], you are correct that in most clinics they do it the way you describe and explain. See # 267) I wait a few minutes until they call me in and Gladys the Trainer Tech cannulates me... first time in ages... she is now the trainer and has these new techs following her around like puppies. She pokes me painlessly... she's still one of the best!

I am tired of watching the olympics so I look around for some movies and find an unknown, non-star movie called "The Trophy Bride's Secret" that keeps me entertained while I doze and take off the minimal 1.2 kgs.

Notes: In at 74.8 and out at 73.6 kgs.

268) Another Conference Over

August 15, 2008
Friday

El Milagro: I am here on a Friday instead of Thursday because of a work obligation... had to attend our annual Gala* last nite. One of the highlights of the Gala this year was our finding Mary Gordon Spence to emcee. She was her usual home-spun self and had the audience laughing throughout the serious presentation of honorees. This year we honored Judge Sakai from San Antonio and Gloria Williams and Carmella Lucera of Austin. The Gala was held again at the Texas Disposal System Exotic Wildlife Ranch and Pavilion**. Another highlight for me was a "reunion" of old Middle Earth staff, Steve Bewsey, Jose del Valle, and me. Steve I see all the time, but Jose (another El Pasoan) I haven't seen in years... and it was great catching up with him.

Rosie poked me and we discussed my recent work schedule and her thoughts that I should be trying to back off some of the work stuff... "You are on dialysis, you know". I didn't tell her that recently I have been in a new phase of my dialysis... used to be that the dialysis was like a "maintenance" operation, meaning that I went from session to session feeling "normal" and the sessions kept me at that 'normal' state. Ever since the time I went too many days (see July 22 ~ # 260) it seems that there is now a new cycle that happens. I feel good after dialysis for a day or so, and then begin feeling more dragged out and sometimes nauseous as I approach my next dialysis session. I hope that this cycle thing that is happening is maybe related to summer and it being really hot and uncomfortable in Austin right now, like 100 each day for over a month now. My lab work doesn't seem to indicate any changes in my chemistry that may be indicative of the dialysis working less well.

After Rosie cannulated me, one of nurses I don't know did my nursing evaluation and I settled in to listening to NPR ATC and reading. First thing I read is a letter the dialysis people gave me, from the provider of my meds to my doc, saying that I am approved for continuing my prescription for Sensipar for another year... this is good, since Sensipar is one that costs $1096 a month, according to the label that reports, "your insurance saved you $1065.99".

Then I read a handout I picked up at our conference from a workshop entitled, "Navigating the Culture of Poverty"... it has a few interesting questionnaires... Could you Survive in Poverty? with some statements reflecting the certain survival knowledges one needs to have when they are poor, middle class, and wealthy.

Then I start to read on my text for the fall semester... close my eyes... and drift off into a doze... It is nice to take a long nap after working conferencing for three days straight! Just let all the stress, worries, and concerns go... and take a nap. I sleep until about seven and wake up to watch Legally Blond on ABC: a nice escapist, no brain, activity to act as a break state between the busyness of the conference and the home chores of the upcoming weekend. And so it goes...

Notes: In at 77.8 and out at 75.2
* TNOYS 4th Annual Gala retrieved online from http://www.tnoys.org/about/gala.php
**Texas Disposal Exotic Wildlife Ranch & Pavilion retrieved online from http://www.texasdisposal.com/ExoticWildLife/WildLifeRanchMain.htm

267) The Entitlement Syndrome

August 9, 2008
Saturday

El Milagro: Rosie the Tech called Friday night to offer me either a 5:30 am chair or an 11:30 am chair and I responded that since it's gonna be so hot, how about noon, so I can do yard work in the morning... she says "No... 11:30, not 12... 11:30". I brought up how they were late last week and she assured me the chair will be ready at 11:30! Okay.

So, I arrive at 11:30 and find from Gladys the Tech that they're not ready yet. A scan of the room indicates that Rosie isn't even there to kid with. I am waiting in the weighting room... which no longer has the weigher, so I guess it is now simply a waiting room. The influence of Jay the New Boss is, I analyze, to make El Milagro look like other treatment centers I've visited around the state... with the weigh station inside the treatment room and the door closed to the waiting room. I wonder what the rationale is for those changes...

Several waiters are here: a couple and a guy waiting for their rides home and a woman waiting for her son, who is on dialysis. They TV is showing the Olympic games and they are all discussing how beautiful the opening ceremony last night was. I begin these notes. The waiters and I agree that with the closed door policy, we worry that we will be forgotten out here, even though we know that they have a chair in there with our name on it.

I notice, sitting here, how much I hate waiting. I am trying to decide if I want to go do something and then return. What could I do? Go down the street to the plant store... but if I bought a plant it'd sit in the truck for four hours and that wouldn't be good. I guess that not liking waiting is part of my leanings toward "the entitlement syndrome"; thinking that it's all about me, when, in fact, none of it is about 'me'. I expect things to always operate on my schedule! When I'm ready, they should be ready! (Remember Albert Ellis' "'Should'ism is shitism'")

If 'I' don't like something and I sit back and accept it without comment or any outward sign of distress, anxiety, or complaint, then I can define myself as having a taoist attitude (or Zen, if you wish). If, however, I complain and publicize my thoughts and feelings about the things I don't like and especially if I criticize and deride the hallucinated progenitor of my contempt, then I am acting like I am 'entitled'... they owe it to me to put me in a chair immediately! "I" am the most important king of the world and I deserve to be seated NOW!

I do notice a number of patients in El Milagro griping whenever things don't go exactly like they want it to be, and my assessment has usually been that their distress is a result of their disease. I think that many patients have an underlying and unresolved anger about their medical situation and the facility and staff unconsciously become the target of these negative emotions. Rather than accept a medical situation, it is easier for some to attack the people and programs that remind one of their terrible situation, I think. And I also think, as I said earlier, the folks aren't conscious of their behavior; they probably just feel some relief and maybe a little bit of guilt after they make their demands and complaints. In my estimation this is an area where the social work staff could provide much more support than is apparent on a daily basis. I can imagine a center where social workers would provide ongoing 'counseling' related to grief and anger work with the patients, which might impact their "entitlement" issues.

In fact, when I self-assess my own behavior and blush at the finding that it might be an "entitlement" situation, it helps me to step back, assess my attachment to my frustration and anger, and then reframe those 'parts' as protective devices that don't have to jump up to defend me right now. The subject of my distress, I tell myself, is simply a glitch in the system that is there to get me to step inside and remember my tai chi... the way of the warrior is to not be where they swing. And then I can breathe in calmness and then breathe out any distress and anxiety and return to a stance of acceptance. Also I can consider how I fit into the system and how much my "questioning authority" is done for the benefit of the whole group of patients, versus for myself.

When I don't remember to follow this strategy, or when my entitled part overwhelms my accepting part, I can become a person with the 'entitlement syndrome". Both Bill Wren and Dusty Humes, in my past, have had a lot to say about entitlement and narcissism... so, if they are reading this, I hope they offer their perspectives as well.

Both Carrie the Tech and Amanda the Tech come through the waiting room, on their way to work, with their little lunch sacks, and they inquire, "Do they know you're here?" and I nod. Finally Amanda comes back out and reports that my chair is ready. I walk in, go to my chair and pull out my supplies for the day; radio, blanket, pillow, earphone, book... and she takes my standing BP. "How much did you weigh?" she inquires. I realize I didn't weigh in... missed it because it wasn't part of my normal pattern, since they moved the weigher inside the room. So, we unhook my BP monitor and I return to weigh in... 76.4. Amanda continues to hook me up and I listen to Tom Russell's "Hills of old Juarez"* on KUT Folkways as I tune the TV to the olympic games... women's beach volleyball. Amanda is 5'9 and we discuss how tall Shayna will be, since she has sprouted almost three inches this summer. Amanda reports that she doesn't wear heels. I settle in to watching the games.

I watch the games for the whole time, and it passes quickly. I probably dozed for awhile too cause I lost part of the time, it seems. Of note, today is the death anniversary of Jerry Garcia**, 13 years ago now...

¡Perdemos su espíritu y música Jerry!


NOTES: In at 76.4 and out at 74.5 kgs.
* Tom Russell's thoughts: http://russelltom.blogspot.com/ (desert views ala EP)
**Jerry Garcia online at http://jerrygarcia.com/intro.html
*** Jerry in the clouds retrieved online from http://jeromeprophet.blogspot.com/2007_04_15_

266) Weight a Minute

August 7, 2008
Thursday

El Milagro: I am on time and in the corner. Kim the Nurse sticks me and does my nursing eval. I call Ron the Nurse over and ask him to get one of the docs to respond to a letter I got from my medications provider, saying they want to "interview" my doctor about my Sensipar prescription to see if I really need it. Now, why do you suppose the doc would prescribe a med I don't need? Another hoop to jump through.

Rosie the Tech comes by and embarrisingly shares that she forgot about the PAC meeting yesterday. Only Susanne the Administrator and I were there... and we decided to continue the newsletter monthly and let everything else slide until there is a new crop of patients that may be more interested in the PAC thing. Then Big Daddy Joseph comes by and we discuss low riders and chop jobs and metallic paint jobs on cars for longer than I'd like to admit.... and I miss ATC and the news.

Tonite I doze and flip the channels and finally end up watching a History Channel show on the Marvel of Big Trucks... and then one on the Marvel of Big Truck Stops and they do interview Willie at his place up north of Hillsborro about the biodiesel rage. This is all very interesting stuff and even though I am feeling the old twitchy feet thing, I am able to concentrate on the big rigs and all about them... reminds me of the Trout Fishing song... how many wheels on a big rig.

I am the last one out and don't really feel too hot at the end. I go out to weigh and weigh out at 75.9 and am confused, since I started at 75.7... or, wait a minute, was my beginning weight 75.7 or 77.5? What did I tell them at the beginning of treatment, cause I wrote down 77.5. Or, is the scale off, like it is frequently with John the Reader? Who knows and I am too exhausted to care, so I just walk back in and yell out, "75.9" and shrug my shoulders. Turn around and head out into a humid Austin night.

265) Saturday at El Milagro

August 1, 2008
Saturday

El Milagro: Last evening Rosie the Tech called to say I can come in today at 10:30 to 11 in the morning. So, this morning I get up and mow the lawn and everyone else is out cold even when I get done with the front at 10 or so. Johnny is here for the weekend (he comes back home to sleep) and his mom calls to roust him out and get him over there to help put a window AC in the studio. I make coffee and take it up to Liz and head out to dialysis... stopping to pick up a breakfast taco at our little neighborhood taco joint.

I pull into the El Milagro parking lot about 11:10 and find out from Jason the Tech that the last guy isn't out of my chair yet: they had a machine break down and are running about 30 to 45 minutes late, so I have another 30 minutes or so. I decide to head over to the ex's to eat my breakfast taco, see the guys put in the AC, and check in with Katie, who said yesterday she needs to talk to me "about Delta Zeta".

So I munch down my chorizo & egg taco and watch the boys pull the AC out of the box and get it ready to set in the window; talk briefly to the ex, and get the lowdown from Katie on the sorority. Basically, she has signed up to live in the sorority house but can't afford it.
She would like her mom and me to pay for it... and my response is to say that I will match whatever she puts in monthly from her own money. I add that it may be time to sell her jeep, buy a bike, and work in San Marcos to pay for the whole thing. She agrees to figure out what she is going to do and let me know.

When I get back to El Milagro, they are ready for me and Jason cannulates me while Connie the Nurse does my nursing evaluation and we discuss college costs these days and how inaffordable it has become since the Texas legislature lifted the caps on costs. I mention the Texas Tomorrow Fund, ways to save money for offspring's education, and the rudiments of my family's strategies, including John's college debts and Katie's working. Connie hasn't saved much cause she thinks her 10 year old doesn't like school and therefore probably won't go to college. I tell her the story of my Dad's putting money away many years ago for all his grandchildren and my not putting money away... and the result of those choices. Amanda the Tech, who is attending ACC because she can't afford the big colleges with her Texas Tomorrow Fund monies recommends Connie do something in case her child re-decides later and Connie goes off to find out if the TTF is even still open to folks.

I settle into listening to KUT's Folkways, with Tom Pittman hosting today. Tom is playing absolutely great music today and even tho part of me wants to settle back and watch some tube, I find myself reading... actually skimming today... my Bush Book and really listening to Tom's choices.

I'm now in the chapter of the book about how big a bet it is that Bush will find a way to attack Iran before he's done in January. According to Greenwald, the Manichean-brained Neo-cons are really pressuring Bush to put his fists where his mouth is. Greenwald states, "...once a president accepts and publicly declares that Nation X is not just hostile but Evil, and once he refuses even to negotiate with that country, all of the options typically available to a country in order to coexist peacefully are eliminated. But that is precisely the barron, suffocating corner in which the president's most fervent supporters want him to be in with regard to Iran, and that is where the president has chosen to be."*

Shiver! It's scary... so, lets see what Tom P. is playing this afternoon. Did I say how nice it is to listen to Folkways for FOUR whole hours while in dialysis? Right now he is playing a series of songs related to the Carters & Cash family; June Carter's Far banks of the Jordan; Carlene Carter's Ring of Fire; and Roseanne Cash's Black Cadillac, as well as a few Johnny Cash songs. He has already played stuff from Doc Watson, Ramblin Jack Elliot, KD Laing, and quite a few bluegrass numbers. Oh, and a Tom T. Hall tune you don't hear too often. I put the Bush Book down and drift off to listener land with my earphones on, my hat pulled down, and my red Mexican blanket pulled up close.

I notice Rosie the Tech walking around when I have about 20 minutes left, with the Newsletter... which I hadn't noticed. She smilingly hands it out and explains it to some folks, once pointing over at me, "If you have complaints, he's the one to talk to..." or something. As I am getting ready to leave she remarks that they have a mandatory staff meeting tomorrow and she'll talk to Susanne about scheduling a meeting for August.

Notes: In at 75.2 and out at 74.3
* Greenwald, G. (2007) A tragic legacy: How a good v.s. evil mentality destroyed the Bush presidency. New York: Three Rivers Press, p. 178
**KUT Saturday Playlist, retreived online at http://kut.org/music/playlist

264) There's Water on Mars!

July 31, 2008
Thursday

El Milagro: I am here on time and it takes staff about 15 minutes to get to poking me. Jo the Nurse is here today and we kid around... "You just had a birthday..." "July 2nd." "Wow. Mine is July 3rd!... but I'm a lot older than you..." "Old of spirit, young of body... wait a minute... (LOL) I mean, Old of body young of spirit..." "What do you know about my body?" Meanwhile she is setting up my BP and doing my nursing eval. Rosie the Tech comes up and joins the fracas and we are having a fine time... which keeps Rosie from hooking me up for 5 more minutes.

I wonder why the Newsletter hasn't been copied yet and Rosie reports that Susanne the Administrator has been out of office for a few days. I wish there were someone else I could give it to... since now the July Newsletter will be handed out in August.

Rosie and Jo are also discussing a new edict from Jay the Boss that they can't bring folks in early on Saturdays... and I wonder what the reason is and they guess it is a control thing... he supposedly doesn't want the staff making decisions on their own. Of course, he isn't here on Saturdays. Staff have taken it to Susanne because they argue that patients and staff both like getting out early on Saturdays. We'll see how this one turns out.

Oh, and the big news is --> there's water on Mars! According to project manager Barry Goldstein, "Our excitement is not so much that ice is made of H2O," says Peter Smith, the Phoenix lander's principal scientist. "It's what we're going to learn about the impurities that are associated with this ice — salts, minerals and all of the things that are going to tell us about the history and the chance that this is a habitable zone on Mars."* Water on Mars. Takes me back to Whitley Strieber's 1997 fantastic accounts of being transported to Mars to attend "the secret school"**. This could be the beginning of learning about life outside of the confines of mother earth... and who knows where that research might lead.

I ponder the possibilities of water on Mars and try to read my Bush Book at the same time... basically skimming the pages until it is time for the ABC News. Then I briefly nap until Texas Monthly Talks on KLRU and end up watching all that PBS fare until I leave at 9.

Notes: In at 77.2 and out at 74 kgs.
*Palca, J., Nasa's Phoenix Lander Confirms Ice Exists on Mars. Retrieved online from NPR at http://www.npr.org/templates/story/story.php?storyId=93148447
** Streiber, W. (1997) The secret school: Preparation for contact. New York: Harper Collins Publishers

263) Sleepy Fingers

July 29, 2008
Tuesday

El Milagro: I get here at 4 and find my chair and Big Daddy Joseph the Tech comes over to cannulate me. I settle in to reading my Bush Book and listening to ATC on NPR... then watch the ABC News... all as usual for a Tuesday session.

Sometime after the news I fall asleep and wake up in the middle of NOVA which I have already seen before. After NOVA I watch an interesting show about archeologists searching for the truth behind the Amazon Women myths from Homer (Secrets of the Dead: Amazon Warrior Women).

Somewhere in the middle of this show, I find that my ring finger and little finger on my left hand are numb and no matter how much I wiggle them or play with them, they don't seem to come back to life... I wonder if it has something to do with the blood being taken from my upper left wrist fistula or something. This hasn't ever happened before. So I continue to massage my fingers and once in awhile they come out of their numbness, but for the most part, they are dead to the world for the rest of my session. (The things I find to worry about)

After Joseph depokes me and tapes me, the fingers come back to life without even going thru that tingling phase. So, that's my exciting experience for today!

Notes: In at 76.9 and out at 75.0.

262) Saturday Dialysis Nite Out

July 26, 2008

Saturday

El Milagro: Rosie the Tech called around noon and talked to Liz about me coming in at 2:00 today. Meanwhile, we're cleaning house and listening to Folkways on KUT... and lo and behold, Hot Club of Cowtown* is there to play a live set on the radio.

When I arrive at the center and weigh in at 76 Kgs, and find my corner chair again. Rosie cannulates me and informs me that the person who got the "risky" kidney is doing great... she reported to Rosie that they told her that it was a high risk kidney... from an IV drug user... and that one person had already turned it down. Rosie's face gives away that she is really thrilled that is working out well for the recipient.

As she finished setting my machine, Rosie asks that we have a PAC meeting in August; to which I remind her that she should make that request in triplicate to the committee. She laughs and replies that she wants to talk to Pete and Germaine about it, but hopes we can meet on the second Wednesday in August, in the morning.

As I am flipping off the TV to hook my earphones to my radio for more Folkways, I notice Joe Ely singing and watch him finish... and then before I can switch it off, all of a sudden there is Joe Nick Patofsky talking about his book about Willie Nelson, sitting beside Paula Nelson on stools, along with Willie and a few muscians. She sings one of her songs and then Willie sings "You don't think I'm funny anymore", the quintessential song for guys who are worried their women are getting tired of their boyish behavior. This song is great and you don't hear Willie sing it very much, so it is a delight to hear it this afternoon. BTW~ there's a U-Tube of Willie singing it at the Luck, Texas fair.

Even tho I mean to read my Bush Book, the TV Travel Channel draws me away from that pursuit by making me watch a show about Mega-Yachts and then I actually drift off into dreamland for awhile. Liz wakes me up by vibrating my phone and explaining the dinner and music plans. When we heard Hot Club on the radio today I called Larry to see if he wants to go, since tonite is the nite Liz & Jen are celebrating his birthday... of course he says OK so we are meeting at El Rey for dinner, and then off to Threadgill's to hear Hot Club of Cowtown.

While I'm on the phone, Rosie comes by to report that I only have 5 more minutes so I tell Liz I'll meet them at 7 and order me some tacos.

I get off the machine, weigh out at 74 even and hurry over to El Rey. When I arrive I face a dour looking group... the orders are wrong... the service is terrible... and the food ain't much better. I sit down, look around and notice the bar is empty! "What's up? I query. Well, it seems like our old restaurant ain't no more and the new restaurant isn't getting started very well. The waitress forgot part of Larry's order, brought Diane the wrong thing, forgot Shayna's Jarrito twice, and who knows what else. Plus, there is a flat screen TV on FOX reporting a story about murders and rapes... I wolf down my tacos and we split, agreeing that El Rey is off the list. Suffice it to say that this present review doesn't end with a recommendation for this NEW El Rey. It's too bad cause we've eaten there for years and really liked the old Arizona owners that brought their Sonoran recipes to South Austin.

Threadgill's World Headquarters, South**: We settle in two rows from front and chat for three quarters of an hour while waiting for Hot Club to play. They are in great form tonight and all three play like they've never been apart. Elana James is really HOT on her fiddle and I remember her really expressionistic face as she rips thru her repertoire. She and Whitt play really well together and I am sure he's playing a beautiful old Gibson Les Paul.*** This guitar has a clear, bell-like sound that goes well with the jazzy western swing the band plays... and boy can Whit whittle down those frets. He and Elana play well together and yet tonite it seems the audience is particularly crazy about Jake Erwin's pounding stand up bass... based on the whistles and applause every time he takes his turn.

As last time we were here, the audience reminds me of all the old Austinites who'll show up for an early evening, outdoors show.... and Elana is gracious, polite and frequently expressing her happiness about being back in Austin, playing for a home audience, and playing where she can see the parking lot of the Long Center, which she opened several years ago. These folks are as tight as ever, and aside from one "live" false start, they sound as good as they did when we heard then at Gruene Hall a number of years ago (with Wayne and Barbara). Elana also tells a few stories about going on the road with Bob Dylan. And so they play all their signature songs ("I got it bad", "Goodbye Liza Jane", some new ones, and finish up with Orange Blossom Special.). I wonder what Larry's Music Report will report on this show?

Notes:
* Hot Club of Cowtown, online at http://www.hotclubofcowtown.com/
** Threadgill's World Headquarters, online at http://www.threadgills.com/history.cfm
***Turns out I am wrong! Now (Sunday) I think it's a beautiful old Gibson ES 175 Florentine, like the one at http://www.12fret.com/usedSoldGallery/gibsonES175jm.jpg

261) Cell Phones & Cancer

July 24, 2008
Thursday

El Milagro: I am on time today and Rosie the Tech has put me in my favorite corner. Amanda the Angelic comes over with her usual smiles and alohas and carefully cannulates me. One of the new nurses whose name escapes me comes by to do my nursing eval and I settle in to reading my Bush Book and listening to NPR. Rosie comes by with a "good bye" card for me to sign for Ron the Nurse, who is transferring over to work under Herman at the S. Austin center.

I read and doze and pick up the news from Charlie Gibson, reporting on Obama taking Berlin, Costco raising prices, our Texas hurricaine, and cell phones and cancer. Ah yes... cell phones and cancer*. I have been warning the world about this problem for years now. Here we have a great example of industry (cell phone companies) ignoring research that might hurt sales of their products in the favor of making huge piles of money selling phones that do everything but make your bed. And "they" will continue to sell these cancer-causing devices until the tumors are creeping outa people's ears and swallowing the phones themselves. Should the government interfere? Who will favor backing off the cell phone craze? Even if there is something to worry about with this new data from Dr. Herberman can anyone imagine it changing the mass production and marketing of this product? Boy, this guy's got nerve, messing with the cell phone industry. Reminds me of the first few folks who suggested that cigarettes might be unhealthy.

As a consumer in a product-driven society I have always mistrusted the salesman. There is an ongoing conflict of purpose between the people selling the product and the people protecting people from the salespeople. Lets see, that could be the same conflict we know as the argument about "big government". Who is it that traditionally has stepped up to 'protect' folks from being bilked if not the government? There are usually some "do-gooder" groups out there like Nader's Raiders but even they are usually pushing the government to do something to protect folks. And they are always standing up to 'big business' who wants to sell you a cell phone and then probably tape all your conversations and send them to George Bush... just kidding. Okay. I'm waxing sentimental... remembering the old "radical" days of over-excited rantings and ravings about changing the world to construct utopia.

"It just goes to show ya... it's always something!"**

Notes: In at 77.2 and out at 74.2 Kgs.
* New Warning: Cell Phone Use and Cancer? Retreived online from ABC News at http://abcnews.go.com/Health/wireStory?id=5436718
**Quote: Roseanne Roseannadanna, retrieved from Wikepedia online at http://en.wikipedia.org/wiki/Roseanne_Roseannadanna

260) Is Four Days Too Long?

July 22, 2008
Tuesday

Morning: So, I probably have gone too long without my dialysis. I had my regular dialysis last Thursday (# 257), then went again early Friday morning (# 258) instead of Saturday, so we could head up to Dallas. I felt fine all thru the weekend, thru Monday's consulting at Promise House, and thru the flight home yesterday afternoon. Last night I took a couch nap (a Nowicki tradition: see # ? <-- until I find the number and edit it in here) before dinner, got up and ate, and then hit the sack. All that was pretty normal after working all day in another city.

About 3 this morning I woke up feeling bloated and with a metallic / vinegary taste in my mouth so I got up and chewed some antacid tablets and washed them down with a little water and went back to bed. Upon laying down that vinegary taste came back up, like when a bottle lays down and the liquid seeks its own level... and I flipped over on my back and went back to sleep for a while.

Well, as you might guess, flipping over and going back to sleep isn't the end... so, as Paul Harvey would say... "Here is the REST of the story!"

WARNING: Gross bodily functions report to follow!

...so, a few winks later, I am awakened by an internal human body alarm that announces to the brain, "Get up! Get up! we have to rush to the toilet..." and we groggily respond and in my bedroom that means navigating around the island of bed thru the shoals of quilt and over the reefs of Time (magazines) that are slippery in the dark and finally into the bathroom, cognating that I should shut the door so as not to awaken my lovely wife with my retching. Usually when I feel nauseous in the middle of the night or in the early morning, there is nothing actually down there to come up when I retch. So my expectation is to make this gutteral retching noise and have no product appear. Well this time it is different and there is at least a couple cups of clearish frothy liquid that I note sleepily, "doesn't taste as bad as last time I puked...when was that... exactly?" I get up off my praying to the porcelain God stance and move to the sink to get a little water... and don't even make it the four feet before I have this sensation that tells my brain I should go quickly to sit on the toilet for a deposit from below. And then my bowels let go of what seems to be two quarts of muck. As is the bowel movement process when theres diarreah-ish (frequency and fluidity of fecal evacuations) one gets up and the process of moving or walking reminds one they ought to be sitting down over there again real soon... like NOW.

So, for me early this morning between the hours of 3:30 until 4:45 am, I was up and down off the toilet intermittently pooping and puking until I felt quite DRY throughout, and BTW, exhausted too. Throughout the mission, as I became more and more awake my brain tried to figure out a diagnosis and all I came up with is the idea that I went too long without my dialysis. According to a few internet resources reviewed this morning, that would seem to be the case, since they warn that missing dialysis sessions can result in "nausea and vomiting"*

So, feeling wimpy today, I called in "sick" and tried to get an early dialysis appointment: "No can do" according to Jay the Boss Nurse.... and later Celeste the Nurse called me and I am going in at 12:30 pm.

El Milagro: I arrived at the dialysis center and told my story to Celeste the Nurse, Jackie the Tech, and then later, Dr. Venkatesh, who was doing rounds today. They all agreed that it sounded like I did go too long without my dialysis. I weighed in at 77.8, which is a little high for me, but not outrageous. Jackie poked me and I settled in to reading my new book, Glenn Greenwald's, A Tragic Legacy: How a Good vs. Evil Mentality Destroyed the Bush Presidency. I read for an hour or so, and then took a nap... until I woke up to catch the early news. My session went fine and I left at 75.2 kgs., with my BP at 106 over 70.

Notes: See Post 207 (January 2008) for an index of topics in this blog. There's also a "Welcome New Readers" post (47: August 2006)
*Stoltz, C. (nd) Health Talk: Kidney Disease. Retrieved July 2008 online from the Washington Post website, http://www.washingtonpost.com/wp-srv/liveonline/00/health/healthtalk/health0404.htm

259) Harold Baldauf's Yartzeit

July 19, 2008

Saturday

Dallas: We are here in Dallas to remember Liz's dad, Harold Baldauf on his Yartzeit. When we arrived last night we went out to eat at a great South American restaurant, La Duni Latin Cafe, and the reason I mention this is that I noticed that after a delightful meal (I am eating lots of flautas these days and their's with pulled chicken were delicious) our waiter cleared the table and then lit a little candle in a frosted jar on the table. It reminded me of a yartzeit candle which Jews lite to honor the soul of the departed and I wonder if that is a custom in Liz's family as I watch the flame flicker and catch, adding a warm glow to the table.

According to Aish.com*, "...the day of death is the marker of who we actually became. Our worth is measured according to how much of our potential was realized. Did we live up to who we were to the best of our ability in the time we had? When our loved ones die and go back to God... we mourn not having them with us, yet we remember what they were able to accomplish in this life. The yartzeit's annual commemoration is a time to feel the sadness -- but also to celebrate who they were and the life they lived."

This morning we all dress up and head out to Temple Emanu-El, the temple Liz's family has belonged to since Liz was a child. The sanctuary, Lefkowitz Chapel, is a beautiful room, seemingly taller than it really is because it's walls are painted white brick and the rows of brick seem to climb up forever to a hanging ceiling with a large modern oval skylight right over the bimah. The back wall's white bricks are interspersed with square glass bricks in no particular pattern letting little squares of light in. At the far end of the room the ark rises as a simple rectangular edifice standing a good 30 feet up the wall with a modern metal sculptural 'ner tamid' (everlasting light) at the top, golden rectangular tiles at the back, and a tall gold-ochre curtain covering the torahs. The bimah is over to the right and a simple white, almost minimalist station that one doesn't even notice until the rabbi stands up on it. Up on the wall behind it, probably 20 feet up is a stone carved twin tablet of Moses' ten commandments. On the left side of the ark is a ten foot tall modern wrought iron menorah bolted to the bricks. It looks like a modern art bunch of long stemmed candles that are bunched and tied 2/3 or the way up to the top. Also to the left is an opening where a choir and any musicians and maybe others sit, but we can't really see it from where we sit... from where we sit we are at the bottom of this huge airy space that is acoustically sound. The cantor and Rabbi (in today's case, a student Rabbi Carla) stand at the front and seem quite small up there. In the pews are about a hundred people who have come out for the morning shabbat service and I wonder if any of them are like us here: honoring the passing of a family member. When Rabbi Carla reads off the list of yartzeit names there are many more than we usually hear at our congregation in Austin.

The service follows much of the same liturgy as ours does and I feel comfortable saying the Hebrew aloud, since I now know much of it with only glancing at the siddur. I like the feel of this place and really wish our congregation had a room like this hall for our services. In the program is a Jewish Life piece by Kirk Douglas on "Why be Jewish" in which he shares that he began to turn towards his faith after his son, Michael, asked him where his grandfather came from and Douglas didn't know cause he has no living family... and he worried and wondered about that until he noticed his Chagall Bible series lithos and realized that his ancestors were Moses, Abraham, Jacob, et. al. and that brought him back to his Jewish practice.

During the service we also focused on a reading in the Siddur* that spoke to me: "Where has this week vanished? Is it lost forever? ...Help me withdraw for awhile from the flight of time. Contain the retreat of the hours and days from the grasp of frantic life. Let me learn to pause if only for this day. Let me enter into a quiet world this day. On this day, Shabbat, abide."

The student Rabbi, Carla talked about her service to the local hospital, visiting the sick and working with Christian ministers... the message being that prayer can be part of the liturgy or can come from the moment and be "spontaneous", yet either way it is a message delivered from the heart and sends out a wish for the healing and the support of the recipient. Joan and I agreed that the student Rabbi could slow down her delivery and enunciate her words more carefully.

We then drive down to the cemetary to visit Harold's resting place and put a few stones on his headstone. Again, Aish.com explains "We place a small stone upon the gravestone as a sign that we were there, not so the passed will know, for their soul already has awareness. But so that we will know. We who are physical need physical acts to express the reality that we are indeed there. The stone is (our) calling card. ...The simple stone, a symbol of eternity, represents our devotion to upholding the memory of our beloved. Our connection lives on and will never die."** And so on or near the yartzeit date every year we return to this place and have a moment of rememberance and silence. This year, according to the Jewish calendar, her Dad's yartzeit is July 26th.

Liz finds a tigereye on the ground... someone came with a gemstone that nature has scattered and she places it on her dad's headstone. She finds another gemstone which Joan takes to place on another friend's gravestone and we slowly walk around visiting with other family friends who now rest here forever.

When we leave the cemetery we continue with the tradition by driving over to Kuby's*** for lunch. Eating is always part of Jewish tradition.

Notes: This detailed post on yartzeit was written partly for my El Paso friend, Sue, who was very curious about the Jewish beliefs about annually honoring people who have passed on.

*from Mikkar T'Filah: A Reform Siddur (2007) p. 135.

**Aish.com's webpage on Jewish Literacy; The stages of mourning, available online at http://www.aish.com/literacy/lifecycle/the_stages_of_jewish_mourning.asp

***Kuby's website online at www.kubys.com

258) Friday Sunrise Dialysis

July 18, 2008

Friday

El Milagro:  I am driving thru the dark at 5 am to get to my dialysis session this morning cause, even though I was just in dialysis last night, I have scheduled myself this morning too so I can miss Saturday to be in Dallas for Liz's dad's yartzeit.  I awakened before the alarm went off at 4:45 and got up and got dressed quickly, thinking I would forgo coffee and my morning meds and just get over there fast and go back to sleep.  Aside from the dog's need to play I pretty much rushed thru my routine coffee-less, which kept me in a haze... kinda like what I think of as a brain fog... not as bad a condition as a "brain cloud"* but real hazy none-the-less... and it makes my mind wander thru old Tom Hanks movies, Loretta Lynn lyrics, and speakerless Matt's Dancing** around in my head... and meaningless meandering sentences tambien.  Okay.  So, I let the dog out, call her in when she starts barking in the night and don't take my meds (thinking some you shouldn't take and then have them dialyzed out... and since I don't remember which those are, I can save some $ by not taking any until afterwards).  And I think about making coffee but worry that it would be terrible to coffee up and lay wide-eyed thru morning dialysis... so, I rush out before my addled brain makes me make coffee. 

I am zipping thru the neighborhood thinking I am also hungary so I curl around the underpass at Industrial and hit my taco / donut joint and am the first person there... wait at the locked door until they see me and grab a bacon and egg taco and 6 donut holes for a pre-dialysis snack-o.  Since no one is on the road this early I can weeve around on the freeway while poring salsa on my taco and wolfing it without spilling or flipping the truck.  The donut holes are much easier.

I get to El Milagro and remember Rosie the Tech's advice about coming in the morning: "Weigh yourself and then just sit down in the waiting room cause they'll call you in when they're ready for you.... no just walking in like you usually do when you are the last person of the day to come in and your chair is always ready.  In the morning they don't like that walking in business... they come find you when your chair is ready."  

So, I do it the Rosie weigh and sit down and wait for 12.5 minutes... when two older black women come in in beautiful Caribbean moo moos and brighten the whole room, weighing in and walking thru to the treatment room.  I still sit there... thinking things like, "will they come out here to get me?... do they know I'm here?... what if the don't come out?... what if I fall asleep out here and no one comes?..." until I finally just get up and walk in too.  I see Jackie the Tech and she startles and says, "What're you doing here... we're not set up for you...(etc.) and I am about to be upset that even tho I am "on the board" they didn't look at "the board" again (which has happened in the past)... and I am about to fizzle... when someone (Margaret the Nurse?) informs Jackie that they have me set up on side 'A' and are ready for me.  Jackie comes around to that side and goes to work cannulating me and I'm connected and running by 6 am... meaning I'll get outa here by 10.

I stick in my earplug-type ear phones and listen lightly to NPR's Morning Edition.  I pull my hat down over my eyes and go back to sleep...

I wake up at 9:20 or so, to see Dr. Moritz's smiling face (remembering the recent report I heard that he is acting more friendly to folks over here) in my waking brain and focusing on his Hawaiian shirt... he is doing rounds with the new dietician whose name escapes my waking brain... 

He does stop at my station even tho they don't have my file... asking me what I am doing here and I reply about the trip to Dallas and he asks if I have scheduled my MRI yet and I say No but I will and he admonishes me for neglecting his orders... before moving on around the corner...

By 10 a newish Tech comes over to de-stick me and without much ado I am outa there, and on my way to my office for a few last minute work tasks before meeting the girls at the house and driving up to Lake Belton to pick up Shayna from GS Camp Kachina and then on up to Dallas.

Notes:  In at 75.2 and out at 74.2

*"Brain Cloud" defined online by Wikepedia: http://en.wikipedia.org/wiki/joe_Versus_the_Vocano 

** Matt's Dance found online at www.youtube.com/watch?v=bNF_P281Uu4

257) Hey hey Woody Guthrie, we're a singin' your song...

July 15, 2008
Tuesday

El Milagro: Just as I am walking out of the office, something comes up and I end up arriving at the center late-ish again... get seated and Big Daddy Joseph the Tech pops me and plugs me in by 4:30. I immediatly go to sleep and sleep all the way thru to 7:45 or so, when I wake up and catch the last few minutes of NOVA.

I am tired today from Shayna being at camp this week. Since she is at camp Liz and I are footloose and free and out on the town. Last night we went to Threadgills and heard Butch Hancock and Jimmy LaFave sing out their tribute to Woody Guthrie, along with a few other folks like Michael Fracaso, a fiddle player named Marcie, and a disheveled surfer dude who couldn't think of anything to play when Butch invited him up to play.  

The whole show was very loose with Butch highlighting everything with his unbelievable ability to pull looseness together and play perfect guitar and inspired harmonica while remembering the words to all his and Woody's songs.  Jimmy was also playing well, although his voice was somewhat coarse from, he said, playing at the Woody-fest up in Oklahoma* for the last few days.  

As usual, Butch was amazingly charismatic and witty and generally standing out as the most "talented", yet casual musician of the group. The setting was intimate and the weather an Austinish balmy summer night.  Lizzie and I sat in the front row in an audience of about 200 of Austin's Woody Guthrie fans and Butch friends and had a fun time there.  

[Since I couldn't find any reviews of the Threadgill's Butch Show, I guess mine is it on the web for now.]

Notes:  

*Woody-fest, online at www.woodyguthrie.com 

256) Summer Saturday Movies

July 12, 2008
Saturday

El Milagro: Of note today, Connie, my original nurse from Moritz's office (BD), is working today and we are happy to see each other and catch each other up on our various happenings: she is now working at the S. Austin office and has been doing hospital dialysis part time... says it has been a year since she has been here! WOW... time flies... Amanda the bright eyed, vivacious Tech cannulates me today and is bright and cheery... taking one summer class and generally looks relaxed and I am happy she wants to devote her life to working with us kidney people.

I have worn shorts today even though it is usually very cold in the center... it is so hot out this morning that I just couldn't wear my blue jeans. Before coming over here I mowed the lawn and did my basic yard duties and on the way over I heard that the temp is already 95 at 12:15 pm... supposed to hit 101 today.

Summer is HERE in Austin, Texas (hot "music capitol of the world" today). The sweltering Texas heat can keep people away and that's okay with us who live here and bask in the shimmering scortch, like lizards on a limestone sunbaked rock. It's really been a rather cool summer so far, but the weather wizards promise us hundred degree days from now on out.

I brought my text for the fall to read, and yet I really feel like seeing what is on TV... if nothing is on I'll study... AHA! I find the newish Harry Potter movie*, which my daughter has been on me to see for ages it seems. It seems like this must be near the beginning of he movie if it follows the last one by starting as the chums are preparing to go to Hogwarts for the school year. I settle back for a good two hour watch and completely enjoy the movie without any interruption.

Afterwards I am just about to flip off my TV when I notice on another TV across the room... Robert Duval in a beautiful gus crown hat... so I just have to watch... and I do for the rest of the time I am on the machine. This show is "The Broken Trail"** and I get sucked into it's portrayal of disenfranchized Chinese and women in the old west. Turns out this is a mini-series that was on AMC and there is no way I'll see it all unless we rent it. The part I see
I like and note that I want to see the whole thing sometime. So, I am watching TV the whole four hours today, and by the time I am done, I feel like doing something active.

Notes: In at 76.3 and out at 74.5 Kgs.
* Harry Potter & the Order of the Phoenix, online at http://www.harrypotterorderofthephoenix.com/
** The Broken Trail, online at http://www.amctv.com/originals/brokentrail/

255) A Story of Coincidences

July 10, 2008
Thursday

El Milagro: Here's an interesting story for you: last weekend one of the techs, whose name is withheld to protect the innocent, had the following experience. This tech's neighbor has a son who just got out of prison on parole and went out to celebrate on July 4th and never came back. The man was in prison for drugs (usage?, selling?... we don't know... we are just listening to the story). So, the tech continues that the next day their friend from a nearby community, who has been on the kidney transplant list for some years now and is on dialysis in that community, comes by to see them and is all excited because he has just heard that "they" have a kidney for him... the only little concern is it is a "high risk" kidney and he isn't sure he wants to take it. He has to decide in the next few hours and doesn't know what to do so came to visit with the tech to discuss his options.

"What is a 'high risk' kidney?" I inquire... "I thought all kidneys up for grabs are checked out and healthy" Well, according to the tech, they have to get these kidneys into people so fast that they rate them based on the person they came out of, but don't always have the time to wait for an autopsy, etc. And, around the same time the tech's friend is in wonderment about taking this 'high risk' kidney, the mom of the parolee comes by to say that he died and she gave up his kidney so part of her beloved son can go on in someone else's body. The tech reports that their friend decided not to take the 'high risk' kidney, and at that time the tech thought of me... knowing how desperate I am to get a kidney. The tech hoped I wouldn't just lunge at any kidney offered, and worried that I might take that kidney.

I questioned how they were even sure of the serendipity of this 'coincidental' story of one neighbor's son dying and giving a kidney and another friend getting that same kidney, which the tech is sure is the actual story, not their own hallucination of a number of possibly unrelated events that found their way into the tech's sphere of consciousness. So it must have sounded like I was criticizing the story cause my neighbor, the quietly watching African American lady whose daughter brings her to the center is snickering about the whole interchange and my questioning the amazing coincidences.

And besides, I share with the tech that I'm ready for a kidney but I don't know if I would consider myself to be 'desperate' for a kidney. I think, when I imagine how it'll play out, that I'll want to know a lot about the the kidney 'they' offer me... and off I go into my own hallucinations about how it'll be....

I listen to NPR and hear a story about how products packaging is shrinking and how the producers (like Kellogg's) aren't telling folks... a blog to check out for anyone interested in this shrinking store boxes thing is Consummerist.com where the guy keeps track of shrinking packaging for us.

I doze and then the story tech comes up about an hour before I'm done, and reports excitedly that they just heard that another patient at this facility took that 'high risk' kidney and they didn't imagine it would get a taker and now this person has the 'high risk' kidney and what're we gonna do... etc. etc. I lay back and take this all in and reply, "Well, don't tell them they got a bad kidney..." I continue that my take it that "things happen just the way they're supposed to... and there must be a reason for what happened that we don't understand, and we don't want to mess it up for that recipient by putting out negative thoughts about their fortune... so therefore, the best you can do is to send them your positive thoughts and wishes for success."

And there you have it. Another day, another Lifealysis. As Roseanne Rosanadana would say, "It's always something!"

254) WE WIN: Medicare Bill Passes!

July 10, 2008
Thursday

Austin: See the letter I received today from Tonya thanking all of you who responded to my request to write our state senators to support the Medicare Bill that includes provisions from our last attempt to update ESRD education and assistance.

Hi Jack,
Today is a day for celebration! By a vote of 69 to 30 the United States Senate joined the House in passing a Medicare bill (HR 6331) that includes key provisions for patients with Chronic Kidney Disease (CKD)—a tremendous victory for the kidney care community.

This is your victory! It is your hard work that helped ensure that key ESRD provisions were included in this bill. You have worked tirelessly to see this happen and I am happy to let you know that your hard work has paid off. Congress has listened and passed legislation that will establish pre-dialysis education and CKD prevention measures, as well as, revise the payment methodology for ESRD treatment, and provide an inflation update. It would be great for you to take a moment and share your appreciation with your Members of Congress (Click here to send your Members of Congress a letter of thanks).

I personally would like to thank you for participating in your monthly assignments and for making extra calls and sending extra emails when we needed them most. I have called upon you numerous times and you have accepted the extra work without hesitation. Your efforts in passing this bill have made and will continue to make a significant difference in the lives of your fellow dialysis patients.

Many, many thanks from the bottom of my heart,
Tonya L. Salstrom
Dialysis Patient Citizens
Deputy Director

So, sometimes contacting your legislators can make a difference! Of course our local congressman, Lloyd Doggett, was on board with the Medicare bill early on. And both Texas' Senators John Cornyn and Kay Bailey Hutchinson ended up voting for the bill in the Senate yesterday! This is a major shift away from their support of the Bush Administration so I applaud them for moving in the direction of a unified congress. Onward thru the fog!

253) ADD Planning

July 8, 2008
Tuesday

El Milagro: So, I drive over here from the office and park in the parking lot and gather up a newsletter to read and a book for my fall class... and, by the time I've got those together in my dialysis bag... it starts pouring down rain like it's been holding up there in those clouds all day long. If I had been two minutes earlier I'd be in there right now, dry. I wonder how long this will last I say to myself as I jump out and walk quickly to the door... I am wet and by bag is even wetter. I find my chair and dry off a little. Celeste the Nurse takes my BP and reports I have 15 minutes before my chair is ready.

I settle in to reading the new TNOYS' marketing newsletter and my mind is playing critical teacher. "Did they not even edit this thing?" I wonder what Theresa thinks and almost call her and then get a second thought and criticize myself for being so critical. I'll probably hear more about this in due time. "Big Daddy" Joseph comes up to canulate me and we are on our way.

I'm back into my routine finally. As I am looking for my notebook to make a note or two, I pull some papers out of my dialysis bag, un-clip them and get ready to make some notes... thinking they are old PAC announcement pages from a month or so ago. I start writing and then un-clip a sheet and turn it over semi-consciously... I find these are the missing evaluations from one of my workshops in Ft. Worth back on June 24th! I chuckle to myself and then feel embarrassed that I emailed the folks up there saying the evals were missing.

I have too many categories in my life to keep any real order. "How in the heck did 42 evaluation forms find their way into my dialysis bag?" Do I ever even look in this bag, beyond the red Mexican blanket and my blue and yellow pillow?

Usually my papers don't flow across my categories: the TNOYS' papers stay in my briefcase and mostly at work. My school stuff stays in a box and my home papers are spread all over the house (and garage) and only infrequently do some of them runaway from their category and hide in another category... like this year's Kerrville Program, which slipped into a stack of papers at work. Or, my board folder, which hid under the seat of my truck for awhile. But evaluations in my dialysis bag? Never happen. That's serious.

I need an assistant, it's plain to see. My life would be easier if I had a super fast scanner that I carried around to super scan all my papers. I could categorize all my papers by type and put them in color-coded boxes. Orange would be the TNOYS papers. Green? ... green would be House papers. Burnt orange; UT stuff of course. Red must be dialysis stuff. Yellow stands for letters I've written to Katie giving her parental advise... actually, I could put that advice on post-its...

So, do I need any more colored boxes? I must be missing a whole category... must look under the seat of my truck when I leave tonight. Time to watch the news.

Notes: In at 76.8 and out at 75.1 kgs.