April 29, 2008
TuesdayEl Milagro: I am almost 30 minutes late today. I walk in and find the stack of newly printed newsletters ready for me to hand out, so I walk around the place giving people a salutation and a newsletter. All but one person wants one and most people immediately set about reading it, making me feel like it is a useful service I provide. This month it is late again, mostly because I have had these incredibly busy weekends so I hadn’t had time to get it finished. However, late is better than never.Rosie the Tech comes over to stick me and we discuss Susanne the Administrator’s article in the paper, and plans for making the meetings in the daytime so more folks can attend. Both of us are worried that after a year of PAC meetings, more than half the initial members have dropped out and there doesn’t seem to be any interest amongst people to re-inject the group with new blood (Ha Ha)I get situated, stuck up, settled in and watch the news: consumer confidence is the lowest since 1992. ABC News reports on a bereaved husband testifying to congress on tainted
Heparin killing 81 dialysis patients and that the FDA doesn’t have the control to catch these things. The Heparin came in from China through Baxter* and it is believed that the contamination was done purposefully to save money. I look over and see my Heparin shot sitting there and sigh. Do I tell the Nurse “STOP… don’t shoot me with that tainted Heparin!” or do I just “take my medicine” and trust in the good old USA? Do I trust my luck of the draw? Do I give it up to God? Do I refuse my meds and make El Milagro staff prove to me that my Heparin is Clean? "ARGGGGGGGGG!"I fall asleep to escape these serious thoughts, thinking that at least I’ll ask them later what they are doing to protect us from tainted Heparin. Mostly I sleep and sleep and sleep, only waking to catch part of NOVA’s show on the Yamato and part of Carrier, life aboard the Nimitz.Here is my Editorial in the new issue of the El Milagro News: **********************************************************************************************
Editorial ~ We are a community here at El Milagro: perhaps a society of compulsory and even reluctant members, but a community none-the-less. As a community we are all responsible for keeping this place the safest and most agreeable place it can be. It is administration’s job to deliver a well-organized medical service to us, the customers. It is our job as customers to receive this service as any service given by professionals and to respect the administration’s service in our interest. They need us as much as we need them… making it a true collaboration between a delivery system and the customers. Since it is not easy for any of us to shop elsewhere, I believe it is in all our interest to participate in making this collaboration work as smoothly as possible.
The PAC is a committee of patients who have taken the responsibility for representing all of us in meeting with the El Milagro administration and in serving the other patients. We’ve been doing this for a year now and four of the original six of our volunteers have made it clear that they are ready to pass the torch along. Some of us here are in more severe medical conditions than others and we must respect folks when they say they must move on. We need new blood (pun) in our PAC.
Think about your own medical condition. It is true that the more active patients get in their care, the better they do with their treatment. So, if you volunteer some time for your PAC, you should do better with your dialysis, statistically. Also, you will feel better, knowing you are contributing to your community. We need four or more people. Join with us.
**********************************************************************
Notes: In at 78.5 and out at 75 Kgs.
* Tainted Heparin appears Deliberate retrieved online from http://afp.google.com/article/ALeqM5ikP1hN91jmfr4buDa4Bw_5JpeYPA New Readers: For an INDEX, click January 2008 on the Sidebar and page down to post # 207.
April 25, 2008FridayEl Milagro: As I sit in my window chair facing the rest of the room I notice that Amanda (the patient) is here with two of those big black splint boots on her feet that folks wear after foot surgery. The grape vine has it that Amanda has had a hard time over the last year… she got a kidney transplant that didn’t work out, her diabetes has worsened and she recently died on the operating table during an operation. She is alive today but looks a little worse for the wear. I want to talk to her but don’t know what to say. She does smile and say “Hi”. I thought I had several references to her in this blog but today can only find #4, April 2006 where we met.My BP is a low 105 over 56 to start today. Carol the Tech and I decide to take off 3 pounds to prep me for 4 days away. She sets the machine and sticks me and we decide to stick 1/2” closer to my wrist so as to not overuse my dead spot. And it is PAINLESS too! WOW… I’m surprised! James the Nurse comes up and does my nursing evaluation.When I come over here on my off days I notice how disfamiliar all the faces are, and I hallucinate they are looking at me the same way. “Who is this new guy walking in on our treatment?” they seem to say with their weary eyes. I smile bashfully and yet want to show that I too am now a veteran. I do recognize some of my PAC brothers and sisters and of course the staff is the same tonight. I'm here today so I don't hafta do dialysis on Ken's wedding day.BTW, I forgot to blog my 2nd anniversary of dialysis back on April 11th! Two years and it is such a regular part of keeping this old body alive, like breathing, that I didn’t even notice the anniversary’s passing. “So, lift one up for old Jack the two year old dialysis guy.” Where ever you are, I’d appreciate a toast next time your having your favorite drink.I’m listening to Morgan Freeman being interviewed on ATC and he is very interesting to hear talk about his 50 years in acting. He reports loving the movies since he was a kid in Chicago, finding coke bottles to turn in for 2¢ each… six bottles = 12¢ and a movie ticket. About returning to the stage after 20 years in movies, he quoted, “Lush likes to drink; alchy has to drink”.
There is nothin
g about Arbor Day* and it makes me wonder if it is on my office calendar by mistake… well, I just checked Google and it IS today… why no news? Do trees care if they are in the news? I care. Arbor Day has always seemed so GREEN to me. Plant a Tree! There have been a number of years when I planted trees on Arbor Day, and I want to hear about others’ celebrations of this important day IN THE NEWS! I even once claimed that Arbor Day 
was my favorite holiday… in order to take the day off when I worked for the state and Arbor Day was one of the only days they didn’t recognize in their 'hundred days of holidays' for state workers. Really; it seems like state workers have a holiday every time you turn around. Boy those were the days... Anyway, if you care about trees, just go out and plant one as soon as practical. Or, if you're lazy, just hug one.After my regular chain of ATC, ABC, PBS… I surf around and find Oceans Twelve**, which I haven't seen, and settle in to watch it for the rest of the time (2 hours) until I’m done and yet it is still going. Will have to rent it cause I can’t hang out here and watch the ending.So, Arbor Day… Celebrate! So it goes.Notes: In at 75 and out at 72.8 Kgs. Starting BP 105/55 and ending at about 101/60*Arbor Day online at http://www.arborday.org/arborday/
**Oceans Twelve on All Movie Guide: http://www.allmovie.com/cg/avg.dll?p=avg&sql=1:289385~T00 New Readers: For an INDEX, click January 2008 on the Sidebar and page down to post # 207.
April 24, 2008
Thursday
El Milagro: I’m here at 4:15 again, having left my office at 4 today. This might be a habit now. No one here seems to mind and my chair is always ready by 4:15 so maybe I’ll just keep coming in at this time. Carol the Tech is here to stick me and I show her the dead spot on my arm where there is no feeling, wondering how long I can use this spot.
Tonight is TV night, so I settle back for a nap and then wake up for the ABC News; switch to McNeil Lehrer, switch to Survivor, switch to Gray’s Anatomy, get unhooked and zoom home to catch LOST. Quicksilver Dialysis!
Notes: In at 76 and out at 74.1 Kgs.
New Readers: For an INDEX, click January 2008 on the Sidebar and page down to post # 207.
April 22, 2008
Tuesday
El Milagro: I’m here at 4:15, having left my office at 4 today. Upon hitting the parking lot I realize my blue bag is at home so I don’t have my candy, radio, or headphones. I do have my blanket and pillow. I call Liz on her phone and ask her to bring the bag if she has time later. I find my chair and Alma the Nurse is trying to set me up and poke me while Rowder is doing his Tuesday Drive By. He looks at my lab work and says all looks fine except for the phosphorous, which he notes has gone up steadily for the past three labs: 5.6; 6.6; 7.5. “What’s the deal?” I report on my email to Jennifer the Dietician about chocolate, tortilla chips, and avocado and also tell him about my nightly nauseousness. He has no suggestions or recommendations about it, replying “we’ll see if it changes…”.
Jennifer the Dietician walks up and reports on my labs officially and wants to give me a copy of the report that cannot be read because the copier is kaput. I decline to have papers I cannot read. Alma is poking me as we talk. She says, in a nutshell: blood count – great; parathyroid – good; potassium – good; calcium – great; phosphorous – the pits. How many chips am I eating, “a grab bag?” she wonders. “No silly. A ton of chips with salsa. I have no control. 7.5 won’t give me a heart attack or kill me this week, will it?” She warns that it won’t kill me and it is still very important to get those numbers back down and I should be able to control my eating, as I have done in the past.
Sherry the Social Worker comes up to report on her work to secure my Kerrville Dialysis for the folk festival at the end of May. She says I’ll have to have another TB test. I remind her that my perfect time is noon til four if she can make that work. Also, that I have already contacted the head nurse down there to let ‘em know I’m coming. Sherry also mentions my being on the list for “nocturnal” dialysis at the south site. I wrinkle my brows and wonder about that… I think I said I am interested in hearing more about it, not that I want to jump in with both feet. She nods her head in understanding and begins to give me more information: it’ll be from about 8 until 3 in the morning; MWF; 6 hours dialysis is better for the body, etc. and my brain is integrating this with all the other things I have to fit in (work, not cuddling with my sweetie, travel, UT, etc.) and reply that I’ll think about it. She says it won’t even begin until the summer sometime. Sherry goes off to write down my “perfect” time and I settle in to writing this Earth Day Post.
Her conversation reminds me that I have to ask Ron our Head Nurse for a switcheroo on times for this weekend so I can attend Ken’s wedding. Ron finally has some time and I call him over and after some consideration, we decide I’ll come in Friday afternoon for my Saturday dialysis. Those 3rd session times are always easier to fit into than the 1st shift times. I thank him profusely and comment on his new haircut.
So, Earth Day. I remember taking Johnny and Katie to Earth Day celebrations in the park when they were little kids. There were lots of booths with information abo
ut living GREEN, face painting which Katie always likes, running wild which Johnny liked, Jazz or Folk music, and lots of bumper stickers. Here in 2008, according to the news-media, it is all about living green. A couple of things we can each do to participate in a greener home are:
1. Switch out light bulbs for those curly energy saving bulbs and turn them off during the daytime
2. Turn off computer when not using it
3. Keep thermostat at 68-75 degrees
4. Recycle aluminum, waste paper, and plastics
5. Use re-usable grocery bags
6. Buy used stuff instead of new stuff
7. Sign up for donating all organs
I doze for awhile, dreaming of greening up the world and what it’ll be like when it is done… and then wake up to watch the ABC News and doze some more and then wake up to watch the last few minutes of McNeil Lehrer and then NOVA comes on and it’s Tom and Ray Magliozzi… the Car Talk guys doing a show on the future of CARS. I love car
s… always have since I was a five year old cutting the roofs off cars my mom had cut out of magazines for me to play with. “Do they ALL have to be convertibles?” she used to inquire. Little Hubley, Tootsie toy, and Matchbox
cars in grade school, AMT Model Cars in Junior High School, real cars in high school, and hot rods ever after. Ahhhhhhhh. I am in hog heaven watching this show. Sayonara!
Notes: In at 78.1 and out at 74.3 Kgs.
The rest of the story on Post # 236!New Picture of the '84 Coleman Columbia on Post # 235!
* Earth day online à http://earthday.envirolink.org/
** Car of the Future, retrieved online April 22 from NOVA’s website, http://www.pbs.org/wgbh/nova/car/
New Readers: For an INDEX, click January 2008 on the Sidebar and page down to post # 207.
April 19, 2008
Saturday
Morning: The phone rang right at 6:30 am: it was our wake-up-call, ringing “Wake up, Wake up!” As I rolled over and picked up the phone to my ear, I knew that I’d hear nothing and I wondered why I put the phone up to my ear anyway. Who in their right mind would call us at this hotel in Arlington, Texas at 6:30 am? We jump outa bed and are ready to go within about 20 minutes. We go downstairs for the infamous La Quinta breakfast and I am amazed to find real fresh food instead of packaged foods. We grab some stuff and some coffee and head back up to pack and get outa there. We have to pick up Johnny in Denton at 8 and get back to Austin for my 1:30 chair at El Milagro. We wish we had time to lay around and enjoy this suite… it is really nice and comfy and begs us to kick back and relax. "No. We must Go".Also, waiting in Austin, are Liz’s mom and sis: waiting for Liz to help them finish preparing our Passover meal for tonight. As usual, our Saturday plate is full! We are here at the old La Quinta Conference Center on 157, right beside Six Flags. We (TNOYS) used to use this place all the time for our Metroplex trainings, so when I drove up I was surprised to see that the place looks 100% different. The lady at the desk says, “Oh yeah. The conference center is that field out there. They tore it down and built this new building behind where it used to be. That’s why it looks different to you.”Weird!~◊~Lizzie and I drove up here last night for a date! Dayenu!*~◊~We left the munchkin at her friend’s house overnight. Dayenu! ~◊~We secured this beautiful suite with my “free rooms”. Dayenu!
~◊~We dressed up in our fancy finery! Dayenu!~◊~We attended my mentor, Wayne Duehn’s, retirement Extravaganza. Dayenu!~◊~38 Years of teaching, research, and leadership, at one university! Dayenu! 
~◊~We visited with Jack’s HBSE professor, Ski Hunter at the bar. Dayenu!~◊~We visited with friends from afar: both in time and miles. Dayenu!
~◊~We saw Jennifer’s delightful daughter Vivian for the first time. Dayenu!~◊~We ate dinner
with David and Cathe and Bonnie and Jim! Dayenu!~◊~We had a fabulous salad and excellent cake! Dayenu! ~◊~We listened and laughed at Wayne’s Retirement speech! Dayenu! ~◊~We filled Cathe Jordan with Jack’s agenda for the NASW Board! Dayenu! ~◊~We moved on to the party after the party and visited with Tony Arrangio! Dayenu! ~◊~We met the monster dog Torgor and he sat on Li
z’s lap! Dayenu!~◊~We approved of Wayne’s new wall art! Dayenu!~◊~We retired to our suite to luxuriate in a really comfy king size bed! Dayenu!
~◊~And... we slept like lambs in lavishness! Dayenu!
After ch
ecking out, we cruised up to U of North Texas and woke Johnny up several times along the way and he still wasn’t awake when we were parked in front of his dorm. But he eventually came out with his bag of laundry and various winter things he is bringing home. And, he talked about his post-graduate plans and current classes and work all the way to Waco before crashing out in the back seat. We made it back to Austin in time for dropping off John and Liz at the house before I returned the rental car and headed over for dialysis.El Milagro: I arrive on time. Joseph the Hulk sticks me and I pointed out where he should stick… and, lo I showed him the spot with no nerves. And lo, it was painless! We are happy. I wonder how nerve endings are dispersed in my arm and make a note to ask Johnny at dinner tonight. Joseph the Hulk smiles too. The session is uneventful. I doze for awhile. I watch the women’s 8-ball championship: Allison Fisher wins! In the final game she makes a really great jump shot to set up a combo on the 9 for the win. Very COOL! In the back of my mind the things I could be doing to get the house and yard ready for the Seder are rolling around in there. Front porch. I did ask John to pick up the pile of leaves and bush cuttings on the driveway. My brain is rambling around while the blood leaves and gets purged and comes back clean and springy. Part of me keeps and eye on the TV although there is really nothing there that catches my eye. I am ready to move on to the house and relations and seeing my son. Sometimes this dialysis is a real drag! So it goes.And now it is time to unhook and zip out to the rest of the day: I note that I can’t just go home and crash out, which I usually do after dialysis. I have a house full of relations who are waiting for Jack so they can begin our first Family Passover Seder to ever happen on the actual first night of Passover! A historical moment. I’ll have to stay awake, drink a tiny bit of Passover wine (also something I don’t do after dialysis), and act hospitable and friendly… which I can do. The Seder proceedings will be conducted in the traditions of Harold Baldauf, as translated by Larry Baldauf, the current head of the family. The whole thing will be a combination of reading the Haggadah with humor and honor; calling out in unison, “Praised art Thou, O Lord our God, King of the Universe, 
WHO HAST CREATED THE FRUIT OF THE VINE!”; throwing the plastic plague representatives (ants and flies and crickets and two dead cows); eating the many deliciously different Passover foods; and finally singing the Had Gadyo with great FEELING. And, Shayna will read one of the prayers in Hebrew for the first time. It brings a warm feeling to me as I drive and imagine this close future of mine. Notes: In at 76.5 and out at 74.5 Kgs. Starting BP 105/55.*Dayenu. Retrieved online from Wikepedia, http://en.wikipedia.org/wiki/Dayenu New Readers: For an INDEX, click January 2008 on the Sidebar and page down to post # 207.
April 15, 2008
Tuesday
El Milagro: I get here on time. Joseph the Hulk cannulates me and this time he shoves the needle into my arm painfully... after I sarcastically said I like the pain... maybe he is testing me. He takes the 5 or 6 vials they take for monthly blood work. Jo the Nurse comes over to do my nursing evaluation. My BP is 116/76.
Rowder comes by to do his weekly drive by and says this week they are focusing on fistulas. How's my fistula? "Fine".
"Okay. Anything else?"
"Nope."
"Next week we'll have labs to discuss."
"Okay."
I listen to ATC, watch the ABC News, and Jim Lehrer's News Hour. Then surf through a bunch of bad TV until I find the last half of The Magnificent Seven. What a GREAT Movie!
So it goes on a Tuesday evening in dialysis.
Notes: In at 76.2 and out at 74.4.
April 14, 2008
Monday
Warning: This is a non-kidney, non-dialysis post! However, writing it is helping me to calm down and somehow feel better about documenting my frustrations.
TNOYS: So, I happened on my referral from Dr. Race to Dr. Lown and thought, "Ah yes... today is a good day to call for this appointment." so first I call my primary care doc, Krienke's office and talk to the "referral office". According to Rosemary I don't need another referral besides the referral to Race, cause that referral is good enough for my insurance. So I call Lown's office and explain that I went to see Dr. Race about this atrophied little finger and he wants to refer me to Dr. Lown for the surgery. The lady asks me if I have a referral and I say "No, but..." and describe the little consulting introduction form I have and she says they must receive a referral from my doctor of record. I replay the story of talking to Krienke's office and the lady replies that then they have to receive a referral from Dr. Race's office. So, I call Dr. Race's office and talk to a nice person who says with my insurance I can just call Lown and set an appointment. I explain what Lown's office told me and the Race woman goes off to check my record and comes back in a few minutes and says, "We can fax the doctor's notes over there and call that a referral". I ask her to call them and explain that to them and then call me back, and she agrees... nice person that she is. 
So, then, about 20 minutes later she calls me back and says that she did FAX the stuff to Lown's office and did call them and they tell her they must have a referral form so she has also FAX'd the material to Krienke and asked his office to refer me to Lown. I thank her for her work and end up sitting at my desk shaking my head. I have just spent 30 minutes trying to get an appointment and don't yet have one!
Arrrrrgh...
Note --> 4/23: When I got my snail mail referral, yesterday, I called Lown's office ready to tell the lady I got the damn referral; and a guy, Ken I think, answered. "I have a referral from my primary doc." "What's your insurance?" says he. "Blue, select from UT" says me. "You don't need a referral." he says. "Arrrrrgh..." says I. "Sir?" say he. I grumble, "The lady at this phone last time said I did even though I told her I thought I didn't" "Oh. Sorry." say he. So, I have an appt for Thursday, April 24th.
April 12, 2008SaturdayMorning: Gladys the Tech called me at home while I was raking the front yard with Liz & Shayna… a family project with Chelsea running around like a wild dog. We negotiated for me to come in at 1:30… in an hour and one half. I had trimmed the Mountain Laurel and tended the two new purple sages and the transplanted hibiscus and we completely raked the front and the side yard… only have the back 40 to go. Also, this morn
ing Shayna and I went over to Texas Truck & Trailer to buy a drop-down ball mount, since our NEW pop-up is lower than the one we used to haul. Yes, we did finally find a ’84 Coleman Columbia for a very reasonable price and now all we have to do is find a place to put it, since Westcreek Assn. has rules about trailers in driveways.El Milagro: I arrive on time and Herman the Nurse points out my chair, right beside John the Reader. As I settle in by putting out my blanket, pillow, book, New Yorker, radio, and earphones, Herman takes my BP and I’m talking away to John and I look over at my BP and it is 235 over 180! My eyes widen with disbelief and I look at Herman and say, “What? Can blood pressure even go that high?” and Herman calmly says, "lets try it again…" and he does and it is just about the same. I am freaking out! So, Herman takes the cuff off me and puts it on himself and does his and it is 140 over something… “That’s a little high for me” he concludes. Jason the Tech is now standing there too, looking suspicious about the whole thing. Herman tells me about a woman patient he used to have whose normal BP was 250 over something and she continually told him not to worry about it. I say, “Well, mine has NEVER been this high and I don’t like it one bit?” Herman puts the cuff back on me and pops the button again. While I am feeling the clamping on my arm and worrying I tell myself “Calm down” while another part of my brain says, “Easy for you to say… you’re friggin BP is off the planet!”. Another part of my brain is yelling, “SHUT UP! Your’re not helping anything! Just chill out…” Soon the cuff says, "pffffff" and I swing around to see the machine: 115 over 76. Herman listens to my chest and concludes that my pulse is 76 and I am okay. We decide to keep track of the BP for awhile and it seems like I am back to normal. Even though I question the machine and this anomaly neither Herman or Jason the Kid have any idea or seeming concern about it. They are happy to just go on with life without questioning the universe, the machine, or my own constitution. I am so happy to be back to a normal BP that I let out a big sigh and I too choose to just move on along time's highway. Jason carefully sticks me with his usual conscientious and patient-centered approach. He puts in a needle, attaches a syringe pumps the blood in and out, asks how it feels, reports how it feels to him, and then goes on to poke number two. Once I am set up, I am ready to finish reading a story in the New Yorker while telling myself "I SHOULD be reading my Saleebey" book. Before I even get my earphones on, John the Reader and I start a conversation and I end up putting away my magazine, book, and earphones.We start off our conversation by commenting on the teen girls in Florida who videotaped beating up a girl and put it on U-tube. John posits that even though we (and he is probably a generation younger than me) did crazy stuff as teenagers, this kind of thing is way out of line with appropriate behavior. I share that my thought is that it has to do with a changing value system and that these new generations are the first to develop their values based on popular culture and their peers rather than their parents and the “adult” culture, and that this is due to the proliferation of technology that permits teens to insulate (“build a wall” according to Ron Taffel) their peer culture (Taffel’s “second family”) outside of their parent’s span of control. With teens’ use of instant messaging, cell phones, and email, many times parents don’t even know who their teen’s friends are, much less “approve” of them. Even though there are good peer culture influences, there are also many more opportunities for experimenting with, and documenting, behavior that dances on the edge of societally appropriate. Historically, teens’ experimentally aberrant behavior was relegated to behind the barn and whispered about. Today it is out front and on the web for everyone to see. [I wonder if Hans, with his new book, Youth & Subculture as Creative Force might offer something to this conversation?] Even after my discourse, John shakes his head and cannot understand the violence and stupidity of these girls. Any youth out there? We'd be happy for your take too.We move on to talking about some of our own upbringing, our take on the political situation, and our kidney situations. John hasn’t yet gotten on the kidney transplant list because he wants to stabilize his health more first. This strikes me as an admirable and ethical stance. As I understand it, he doesn’t think it is ethical to get on the list before HE thinks he is an appropriate candidate for a new kidney. He evaluates his own situation with some suspect, since he has been hospitalized five times since starting dialysis. He says something to the effect of, “I would hate to take a kidney from someone and then up and die… that would be a waste.” The flow of the conversation rolls on: hospital drugs to the similarities between vodka gimlets and kamikazes. The impact of liquids on our kidney situations. I share that they always told me not to drink more that 32 ounces a day. John is limited to a liter and a half a day and he says he can’t go one glass over that without having serious complications leading to another hospitalization. So, how much is a liter and a half? Herman comes to solve that one: “32 ounces is a liter” and then he adds, “approximately… that’s how we remember a liter” so, John can supposedly drink a little more than I am supposed to; although I admit to him that I seldom pay attention to the number of ounces I drink per day. He laments that he has to watch it very carefully, which is a reason to drink vodka gimlets rather than gin and tonic. The tonic is a waste of precious liquid. Finally, John is about to leave and having to wait a bit for his BP to come up and the common dizziness to go down so he can drive. He leaves and I settle back to watch TV for my last hour. I watch the Masters and although Tiger has finished already it is fun watching the young guys, Immelman and Snedeker and hearing about how Tiger is in 5th place but that really means to the commentator that he is winning. Before I know it it is time to unhook and head home. Jason unhooks me and all is well. It is still a bright sunny afternoon-like day out and I look forward to checking out the lawn when I get home. So it goes.Notes: In at 76.2 and out at 74.3 Kgs.*Skott-Myhre, H. (2007) Youth and subculture as creative force: Creating new spaces for radical youth work. Toronto, ON: U. of Toronto Press.New Readers: For an INDEX, click January 2008 on the Sidebar and page down to post # 207.
April 10, 1970
Tuesday
El Milagro: I arrive and find my chair on the back wall and Jo the Nurse, in a brightly colored smock, smiles her way over and gets my BP and sets up my machine. She asks who I want to poke me, with the big guy, Joseph the Hulk, standing right behind her. I say, "The big guy can do it." and he smiles. Then, somehow Carrie the Tech zips in and starts unrolling the tool kit and Joseph just stands there and Carrie says, "Oh... did I interrupt something here?" and Joseph replies, "fine with me for you to do the work here." and they chuckle and Carrie ends up poking me a little too fast, causing more pain than usual.
I listen to NPR ATC (food prices up 50%!), then watch the ABC News and then channel surf over to a show about the history of horse and buggy driving (http://www.rfdtv.com/shows/ruralheritage.asp) which is moderately interesting. At 7, of course, it's Survivor... where Eliza presents a fake "hidden immunity idol" and ends up going home. My take... this series not as interesting as usual, although I do like several of the players (James and Parvati), both past series 'favorites'.
After Survivor I find that LOST isn't on. It's LOST and I can't find it! I have to watch a repeat of Restless Houswives in Suburbia. Boring.
I settle on reviewing an article about the "art" of social work practice* that posits that EBP's are okay but miss the point of excellence in the practice of social work, since canning practice strategies, doesn't allow for creativity and intuitiveness of delivery. Graybeal says, "Competence in social work... will be found... by the creation of uncommon common sense. Social work is a matter of intuitive understanding, but it must be the intuition which is unusually sound, unusually fluent and accessible, and subject to unusually careful evaluation."
Soon it is time to unhook and go out into the leaving light. So it goes.
Notes: In at 77.8 and out at 74.9
* Graybeal, C.T. (2007) Evidence for the art of social work. Families in Society: The Journal of Contemporary Social Services 88(4), 513-523.
New Readers: For an INDEX, click January 2008 on the Sidebar and page down to post # 207.
April 8, 2008
Tuesday
El Milagro: Get here 20 minutes late… surprising since I have been rushing all day; starting in Plano this morning at a consulting gig. I left Plano at 11 and actually made it to Enterprise to return a car and then zipped over to see Dr. Race for a 3 o’clock appt. Dr. Race is referring me to a hand surgeon, Dr. Lona, since my atrophied little finger has gotten beyond where he feels comfortable tackling the operation. What I like about Race is he is personable, friendly, and down-to-earth… so I hassle him a little about referring me to “the best” guy, which I quip, “all the docs always say”.
John the Reader calls me over to discuss last night’s championship game… we both think it was one of the best games in years and we are both happy about Kansas winning. I share about my ‘brackets’ (I picked Kansas to win it all) and John shares about his family connection to Kansas and friend connection to Memphis.
Pretty soon Rosie the Tech calls me over to my chair to set me up and sit me down. As she is checking my BP and getting ready to stick me she tells me the story of her weekend trip to Houston with her cirrhosis brother and describes her frustration in dealing with his selfishness; “none of your crosses are mine to bear”. I’m a bit confused so I agree and listen to her and reflect how frustrating it must be. She goes on for about 10 minutes while sticking me and we conclude that what goes round comes round and the way he treats people will ultimately come back and bite him in the butt.
I settle in to writing up some notes about my TA trip to CITY House and then writing this material and then listening to NPR, etc. as always.
Watch the 
news, kick off my shoes, and take a snooze: I am tired from two days of travel, eating rich foods, and drinking too much liquids on my trip. When I do trainings or consulting I get thirsty so I drink more on those days than the recommended 32 ounces, making me a bit puffy in the hands.
I end up watching Cracking the Maya Code on PBS and am fascinated at the amount of sleuthing it takes to translate these beautiful hieroglyphs. And, so it goes here and Now.
Notes: In at 77.9 and out at 75.0 Kgs.
New Readers: For an INDEX, click January 2008 on the Sidebar and page down to post # 207.
April 5, 2008
Saturday
Morning: I just have to record my recent foray into the world of bean nach
os. Last night, after the Kick Kats beat the Lava Jets 7 to nothing, several of the mom’s decided that it was a Friday night get a drink night so we all headed to Seranno’s after the game. Of course, we arrived right at one of their busiest times and tried to find spaces for the 12 team members and about 14 parents. While we got on the list for a table for 20, most of us gathered on a long high table that traverses the bar and ordered our margaritas and chips. Finally, they set up a large table in the back room and then the mom’s found a booth to gather in, and one other dad and I chaperoned the 15 kids, including the whole team and several older and younger sibs.For one thing, Serrano’s wouldn’t have been my choice for places to go since there isn’t much on the menu that I can eat. But, what can I say to a bunch of moms bent planning where to go for a whole team. So, I look at the menu for awhile and decide to get nachos. Why? Well, all the enchiladas are completely inappropriate. Even their green enchiladas with chicken are smothered with cheese, which doesn’t work, or even sound good to me tonight. "Tacos?" None sound good either. "Taco Salad?" Nope. So, I finally decide that bean and cheese nachos are an 'appetizer' and therefore ‘smaller’ than a full dinner. And, I can swipe off some of the cheese and beans, and the corn tortillas, although not great for me, are something I eat regularly and therefore "okay" in my dysfunctional brain.So, since Liz is in the other room with the girls, I go ahead and order a plate of bean nachos, telling myself that I’ll take my binders right afterwards and all will be "okay". What I realize now (the next morning) is that I should also have been thinking about the nachos + binders + time + pooping equation at the time of ordering. This is a tip for all of you out there who are on dialysis and need to pay attention to what you eat.Diet TIP: When you are thinking of ordering food (Kp), picture it binding (Vc) with your binders and moving (Kp) through your intestines and bowels and then feel it (K-) coming out the other end. Then make your choice of what to order. [CUE --> Kp --> Vc --> Kp --> K- = Choose?] This is, of course, is derived from the famous NLP Naturally Slender Eating Strategy, and will differ based on your own decision-making strategies. In general, the naturally slender eating strategy is cued by thinking about eating… for example, looking at a menu in the restaurant. 1. You check how your stomach feels right now (Kp)2. You ask yourself, “What would feel good in my stomach?” (Ad)3. See an option (create or remember) (V c/r)4. “How would this feel in your stomach over time?” (G/Kp --> K+/K-)5. Eat whatever will feel best in your stomach over time (1+ hr, 2+ hr, etc.), as long as it feels better than your stomach feels now.6. CUE --> Kp --> Ad --> Vc/r --> [K+ or K-] = Choose? *But no, I don’t really follow my tip at the time, which is why I am posting this tip today. I eat those bean and cheese nachos… along with about 20 delicious jalapeños and am just as happy as a clam afterwards. Flash forward to 2 am, when the binders and bowels have worked and I am awakened with a bodily signal to go sit on the toilet. A word about binders: we eat stuff and then we take our binders (I take 1/2 a Fosrenol chewable, 3 PhosLo’s, and 2 Sensipars after the evening meal) which “bind” with the phosphorous and potassium in the food we just ate, and move that binded material on through the intestine and bowels so it doesn’t get ingested into the system where the kidney can no longer process it. Once binded and moved through, of course the material comes out in a bowel movement, which I refer to as poop. The consistency and frequency of passing the poop has to do with the amount of binded material and, I think, also the flagrancy of our breaking our dietary rules. In other words, the worse we eat, the worse our experience of pooping. So, here I sit at 2 am and at 5 am emptying my bowels of material binded from the tasty bean and cheese nachos with the 20 delicious jalapeños.El Milagro: I had called in late to get a time; after we all (including Chelsea the Dog and Calla the Flower) went to the farmer’s market to buy organic doggie treats, blackberry peach jam (Yum Yum) and a columbine plant for the back hillside. Jason the Tech said I can come in at 3:15 pm.I arrive at 3:15 and they have me in the back corner today. I say “Hi” to Margaret the Nurse who is playing with my machine as I walk up and she gives her normal “Hmmpf” and the old stone face that always makes me wonder what is up with her.Amanda the Tech is here and we discuss school and summer plans while she sticks me. She is taking the summer off from school and gonna work full time, which will brighten this place up immeasurably. Today I can tell she has increased her confidence at sticking people, like me, for instance… an 8.5 on the old 10 point scale. She says “thanks for the feedback” in her blondie blushing way and I share with her some of our own summer plans. I think of my own daughter, Katie, and wonder what she would be like as a Tech… weird thought… I am listening to the end of Folkways on KUT and they are in their fundraiser pledge drive and Tom Pittman (Austin Lounge Lizards) announces a pledge from Plano, Tx! They listen on the net and are sending in a pledge… cool! Us dyed in the wool partners of KUT even listen during pledge drive to see who is pledging (heard Bobbie and Theresa this morning)… we are hopeless radio heads.Suddenly I notice a shrill siren sounding alarm and see Jason the Tech sprint across the room and into the back. We have Water Problems! Then J the T returns and talks on the phone to someone (the water guy?) and then comes around and adjusts everyone’s machine, telling me my alarm will go off again. Now he is back on the phone while inspecting some sort of manual.
Now machine is beeping to tell us “there is no water you guys” and the staff comes by about three times before I ask them to show me how to turn off the beeper myself. Aha… I finally get my machine training… en vivo. Gladys the Major Tech comes by soon and reports that the water is off and they don’t know why but the Water Guy is on his way. Even though all these machines keep beeping their water notices, I have my A+ earphones on, now listening to ATC, so I am not bugged by the whole scene.So, the water guy gets here and talks to Jo the Nurse, telling her it is broken and she must “return” everyone. That means, return the blood that is in the machine. Before they get to us in the back corner, the H2O guy pops back out saying he replaced a filter and it is gonna work again… so everyone gets turned back on.I’m watching the Santa Anita Derby by now. El Gato Malo; Colonel John; Meeting with Destiny… they’re all there in their finery. The short term race has Colonel John come around the far corner, move to the outside, and just zoom by five others to take the win by almost a half a body. No matter how ADD one is, you can’t get bored with a two minute horse race.Jo comes up and reports we’re doing fine again, but by now I’ve noticed my normal wash (rinse) isn’t there and mention it to her… she apologizes, saying they are out of my rinse, so I have no rinse today. Well, you know what that means…So, we’re on to the Final Four and again entering basketball heaven… I want Memphis to beat the Hell out of UCLA, since Memphis beat us they should show themselves to be more than anyone else can handle. If they beat UCLA then somehow I will feel better about them beating UT, since we beat UCLA earlier in the season.Is it a case of the placebo effect or are my calves really both simultaneously cramping? The calves think it is real cramps. My brain is trying to convince my body that it is like an oppositive placebo thingie… I don’t have the rinse so I fool myself into getting cramps… and in a few minutes my leg pain convinces my brain that it just doesn’t matter (it just doesn’t matter!)… let’s yell at Amanda. She comes over and gives me some liquid, then helps me stand up and put some weight on my calves… which, after about 4 painful minutes, begins to work and I sit back down. When cramps are over I find myself feeling so happy usually… and a bit worn from the pain. Within a very few minutes of getting back to a comfy TV watching stance, my time is up. Memphis has won and I rush home to watch Kansas and North Carolina. I want our Big 12 champ to beat NC, btw. Notes: In at 76.3 and out at 74.9 Kgs.* NLP Practitioner Notes (1986) © Unpublished Manuscript from NLP of Colorado. Day 14, p.4New Readers: For an INDEX, click January 2008 on the Sidebar and page down to post # 207.
April 3, 2008
Thursday
El Milagro: I arrive almost on time, after stopping by a convenience store to pick up some hard candy to snack on while blood cleansing. Carrie the Tech sticks me. Herman the Nurse is here and stops to kid me about missing the training session last Sunday. Our PAC had set up a session to learn the dialysis machines for 10 am last Sunday, and out of the 10 people who signed up, only one showed up and he already knows about how the machines operate. I apologized to Herman that I completely forgot about it and although it was in my calendar, I usually don’t look at my calendar on Sunday mornings. I asked him to consider another time, and he just laughed, so I will wait a few months to schedule it again.Jennifer the Dietician came by and we discussed the idea of dieticians bringing healthy snacks once a month and she clarified that they are willing to do a snack in the first few weeks of the month and the PAC can do something the second two weeks of the month. She is concerned that we not bring donuts and I replied that we can plan to bring recipes we have made from the DaVita website. Tonite Survivor is back on and I am glad about that, having missed it for the past few weeks, and then, while watching it I am kinda bored by the show’s happenings and again wondering if the whole Survivor thing is over for me. Afterwards I switch over to LOST only to find another repeat. But, after that there is a new Without A Trace, which I hurry home hoping to not miss to much of the beginning. Notes: In at 77.3 and out at 74.2 Kgs.New Readers: For an INDEX, click January 2008 on the Sidebar and page down to post # 207.<◊><◊><◊><◊><◊><◊><◊><◊><◊><◊><◊>
April 1, 2008Tuesday El Milagro: I arrive 20 minutes late and my chair is ready. Alma the Tech, who is the diminutive opposite of Joseph the Hulk, comes to stick me today. She is small and seems very comfortable with her job and sticks me fast with NO pain. Rowder and the dietician come by with my labs from Easter and my phosphorous is up again and Jennifer the Dietician wants to blame it on Easter and then catches herself, saying “you don’t do Easter, do you…” but, I do eat… and, who knows what spiked the phosphorous. So, as usual, they ruminate and we decide to wait and see what comes up next lab. Rowder asks if there is anything I need and, as usual, I reply, “no”. I check the clock and again wince at the idea of my insurance paying for a two minute doctor’s visit. I read my Saleebey book for awhile while my brain is plotting next steps for the social work licensing mess we have in Texas. I am thinking that a “call to arms” letter in the NASW Newspaper might be the way to advertise the problem in a broader way and get folks rallied to work on some rule changing activity.I turn on NPR to get these plots out of my head. One thing about spending so much time in dialysis is there is plenty of time for plotting, thinking, and just generally considering lots of stuff we don’t usually have the time or luxury of considering. It’s like the modern equivalent of Thoreau’s sojurn at Walden Pond… not as naturalistic and idyllic… but, it does force one to sit and think.By the end of ATC, I am looking through the TV channels (which Thoreau didn’t have at Walden Pond) and find the History Channel’s series on the Universe and immerse myself in the collisions of the universe and forget all about all my little concerns.Notes: In at 79.1 and out at 74.5 Kgs.New Readers: For an INDEX, click January 2008 on the Sidebar and page down to post # 207.
Heparin killing 81 dialysis patients and that the FDA doesn’t have the control to catch these things. The Heparin came in from China through Baxter* and it is believed that the contamination was done purposefully to save money. I look over and see my Heparin shot sitting there and sigh. Do I tell the Nurse “STOP… don’t shoot me with that tainted Heparin!” or do I just “take my medicine” and trust in the good old USA? Do I trust my luck of the draw? Do I give it up to God? Do I refuse my meds and make El Milagro staff prove to me that my Heparin is Clean? "ARGGGGGGGGG!"
