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.
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?
* 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
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
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
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.
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/
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!"
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.
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
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!
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.
in the red t-shirts. My thought was to catch them enjoying the festival instead of working their shifts.
This weekend Michelle, Michael, Maya Papaya and their gang came and Shayna liked that. They settled above the rows of benches. The kids went swimming at the their hotel and basically we inseparable for the time they all were at the ranch.
The music highlights this weekend were Kathy Mattea and Amilia Spicer on Friday night, everyone on Saturday (Trout Fishing, Teri Hendrix, South Austin Jug Band, and Guy Forsthe), and the usual roundup of oldies on Sunday night (Wheatfield, Bobby Bridger and Anais Mitchell). Wheatfield is the original St. Elmo’s Fire, of which half became the famous Trout Fishing in America. I had never seen them play together although I know I saw St. Elmo’s Fire play at an Austin venue called Piggy’s back in the “ye olde days”… I think.
And, of course Trout played the mainstage and at the Children’s Concert… I went to the children’s concert on Sunday to see them and especially to hear them sing “pico de gallo”.
Usually Liz and Shayna cut out before the final night’s concert but this time because of the gas crisis (only bringing one vehicle) they needed to stay with me cause I don’t haul the pop-up out of the staff campground until after the whole thing is over and all the gates back there are open. It was really great to have Lizzie there for the Sunday night concert, and we sat with Bobby & Theresa and their crew and did the whole “heal in the wisdom” group sway and sing at the end, with Bobby Bridger, Bob Livingston, et. al. crooning out those words that bring us all here every year.
Again, I didn’t head to the campgrounds, but just back to the pop-up to settle in for a generous sleep. The next morning was a lazy one, taking our time taking down the camper and cleaning our site before heading out of the ranch for the last time this year. Every year I am sad to leave at the end of the fesitval, even though it cuts a huge swath in our ongoing weekend chores, hobbies, and other habits. And, every year we agree it it worth it!
My weekend visit to the Dialysis Center went fine and the staff were friendly as ever, although for some reason, they thought I was coming in at 8, not 6:30 a.m. That's a sad thing to hear at 6:30 in the morning... but, they busied themselves around at setting up my chair and it was smooth sailing after that. I have been able to pick up needed supplies in town for Cari, so that makes me feel a little useful when I go in for Saturday morning dialysis.
On Saturday afternoon, while Liz and party were out swimming at our favorite swimming hole, I attended the Music to Life concert, hosted by Paul Stookey and his daughter, Liz Sunde. It was a series of folks singing their songs about changing the world, and my friend Lisa (The Therapy Sisters) won an award for writing. She is second from the left end on the top row, looking quite proud of herself. Amy Spence ("Carry the Weight of the World") and Randy Browning ("Left Wing Radical Rag") were highlights of this afternoon concert.
When the kids got back from swimming, Jo and Eric had to start their dinner shift and the rest of us caught the Austin Lounge Lizards in the heat of the downing sun. They did a few of their new songs, including their newly famous hit about "progenatoravox" on the new CD, The Drugs I need. Theo really liked the Lizards and I believe that before the end of the weekend he ended up with one or two of their CD's. Of course, the Lizards play out here every year and we hear plenty of them ala KUT... They are losing their fiddle player and made plenty of jokes at his expense this set.
Slaid Cleves was back on the mainstage after who knows how many years of being away. By the time Jo and Eric got off their shifts they were ready to hang it up as krew, but I did get a shot of Eric in his new cowboy hat with Theo and Uncle Larry listening to Ronny Cox. After the concert on the mainstage, Larry and the Londonites went out to visit the campfires and I turned in, getting some needed shut-eye before my Sunday breakfast stint, along with Eric, Jo, and Lizzie. Eric and Jo quickly realized why we all do breakfast kitchen krew rather than dinner. After breakfast we sat for a family photo taken by Calla at the pop-up.
So, now it's on to finding time for Week 3's post, where we'll feature the relaxing last weekend and pics of our friends on staff.