September 11, 2007
Tuesday
El Milagro: It’s the 6th anniversary of 9/11 and I’m here in my chair, hooked up, and listening to NPR All Things Considered in my earphones. Gladys hooked me up and took about 6 test tubes of blood for my various blood work tests. There are a number of stories about 9/11 and they conclude with “In all, 2,974 victims were killed by the Sept. 11 attacks: 2,750 connected to the World Trade Center, 40 in Pennsylvania and 184 at the Pentagon.” 9/11 is one of those dates that will live on in infamy, like Pearl Harbor. We find ourselves saying things like, “I remember what I was doing when I heard the reports” or, “I was watching ___ when they broke into my TV show.” On that day I was waiting for Kim to pick me up and take us to Lake Travis to facilitate an all-day teambuilding retreat for the staff of LifeWorks. We went out and pulled the group together and shared with them what we knew about the attacks (since they were without media at the lake) and then cancelled the rest of the day, joining with their bosses to say, “Go home and be with your families”. Seems like a long time ago now.
Sherri the Social Worker pops in and out of my 9/11 musings to get information on my DC trip so she can arrange for my dialysis up there. Setting up out-of-town dialysis is reminiscent of being in the military and transferring to a new base (I hallucinate). Around here they call today Patriot Day and they have a big American flag hanging from the ceiling and little American flags taped to many of the dialysis machines. Ron the Nurse cheerily comes around passing out sandwich bags of popcorn and strawberry or grape juice boxes. As I watch him I notice that most patients are delighted to get these little “perks” and that revs up Ron’s animation.
During the past week I’ve been out in cyber-space exploring other PKD people’s blogs, since we are all listed on the PKD website. As I surf around checking out people’s blogs, I notice that some of them report the pain and suffering related to our condition: how PKD leaps into our lives unexpectedly and then totally overwhelms us and scares us. My own surprise at finding myself with PKD is ancient history now, it seems; and I can hardly remember the shock Lizzie and I had when Dr. Moritz was explaining, “You got a tiger by the tail, boy!”. So, tonight I’m considering the more ominous aspects related to having a chronic condition like PKD. My worry, when I allow it to surface in my brain, is that we never really know what is happening. In a world where knowledge is power, we can never have enough knowledge to set aside our worries about our condition. Since finding out I have PKD ten years ago, there have been numerous times that I have had aches, pains, symptoms, and manifestations that I have to connect to the condition, but who knows if they really are. As with any kidney condition the connection to blood pressure, thyroid, digestion, and basically all other mechanisms of the human body necessitate concern whenever anything feels funny or seems to be going wrong.
And boy, I can create maladies to worry about! In the area of hallucinating that a twitch or ache in my body is a sign of impending doom, I am very creative. The problem is that there isn’t enough knowledge to allay my worries: there is only enough knowledge to amplify my doomsday despair.
Notice: Gross Bodily Function Descriptions Ahead ~ For example, a few nights ago I awoke at 1:30 am with a need to poop. Alright; that happens when one is on binders. As you might suspect them binders bind with phosphorous and usher it right down through the system and out the pooper (and we take them binders at EVERY meal). So, I poop a very loose, runny poop and then start worrying about that. Then I notice I have an uneasy stomach. I immediately put myself to the task of figuring out what is the matter, interrogating myself with my harsh parent voice a “Did I ingest too much potassium or phosphorous? Why is my poop so runny? Were my binders sitting next to my stomach wall? Did I take the binders too late after eating? Am I becoming too anxious? Ugh, I feel sick. I should go back to bed and lie real still and put this crap outa my mind…”
So, I lie back down and doze for about an hour according to the luminous clock radio. Then I wake up and have a need to rush back into the bathroom to poop some more. Same story; same ruminations and my stomach feels even worse. I go downstairs and throw up in the downstairs toilet (so Liz doesn’t hear me heaving). It is horrible and tastes like metallic sour bile. "Yuk!" And my self talk continues: “What is going on? Is this 
because of those two chiles I put on my chicken last night? Do I have a bug? Am I worrying myself sick? Is this some sort of sign the dialysis isn’t working right?" I heave a few more times until I can tell there is nothing else down there to come up. And I wash my mouth out in the kitchen sink and drink a few gulps of lemon lime soda to further wash away the taste. I sit on the sofa for a few minutes, looking around the quiet light of the night time in my living room. The moonlight comes in through the back windows and everything seems still and comfy and I begin to breathe more peacefully. Back to bed again. I wake up again and hit the toilet a few more times that night; at 4:30 and about 6. And then I wake up finally at 7:15 and actually feel okay and ready for a new day.
So, the point of this self diatribe is that when we worry about our disease and the various concomitant physical afflictions, we can slip into despair or we can see our worry as keeping close watch on the challenge. Don Juan used to say, "only as a spiritual warrior can one withstand the path of knowledge. A warrior cannot complain or regret anything." When situations like the above happen, we are many times are afraid to ask the doctor about them or embarrassed. And usually, in my case, I think it is something I did wrong or it’s my fault I feel such-and-such. So I am hesitant to talk to anyone about it, since I am sure they’ll take pity on me or say they don’t know what it means (have no answers doctor), or worse yet, try to further constrict my life or give me more drugs. So, even though there are these physical things going on once in awhile, we must take them as our challenge to survive and learn from; and we can hope to move on to a more comfortable place real soon.
My recommendation for my brothers and sisters who are in the PKD boat or the dialysis boat is “...live your life fully! Accept the pain and fear and worry because it too is part of living. Without feeli
ng the pain you cannot really appreciate the joy of living.” Remember what Jack Kornfield says, "The great forces of ...fear and ignorance that we encounter can be met by the equally great courage of our heart. Such strength of heart comes from knowing that the pain that we each must bear is part of the greater pain shared by all that lives. It is not just 'our' pain but the pain, and realizing this awakens our universal compassion."*
Nam-Myoho-Renge-Kyo
Notes: In at 76.9 and out at 72.5 kgs.
* Kornfield, J. (1993) A path with heart: A guide through the perils and promises of spiritual life. New York: Bantam Books, p. 74
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September 8, 2007SaturdayEl Milagro: I’m here early today, arriving at 11 and I notice Ron the Nurse in a new light, since he is now the Clinical Director. He was promoted to take Herman’s job when Herman moved to the new S. Austin facility as administrator. Ron seems more attentive to everything that is going on right now… he is in the beginning of his learning curve and hyer-attentive, as he should be. Right now he is talking to one of the older men who always wears burnt orange on UT game days… so I hallucinate the old guy is either a long-ago graduate, or someone that worked at UT. He’s wearing his burnt orange polo shirt today, as I am wearing a burnt orange t-shirt.Carrie the Tech comes over to stick me and asks my weight. My thoughts of Ron’s new position have erased my short-term memory and I look over at her and say, "Uhhhh; I can’t remember. Sorry.” James the Nurse has just strolled up and he offers to go get my weight from the weighting room. I mumble, “maybe it was 73.9…” and my voice drifts off as I stare back at Carrie, who has sharp eyes and a determined scowl. James returns to break my stare and reports, “He was 73.9” and I nod my head approvingly. Carrie jumps ahead to the business at hand: “So, how much you wanna take off?” I’m not used to them leaving it up to me so completely so I sheepishly say, “Umm… well, my dry weight is usually about 72.0, so…” and she quipped, “So, how much?” with a stare that seems to be getting more icy… “I can’t set it until you tell me.” “Okay. How about 72?” I offer, and James interjects, “Take off 2”, and she goes about her task of setting the machine. When she is done and is done cannulating me she decides to make conversation. “So, where do you live?” she asks. I tell her immediately, comparing her in my mind to Nurse Rached*, and hoping she just walks away and leaves me alone.
I must admit here that I know it takes two to create an image of aversion (that I now have ringing in my brain) and I know I’m stretching it to compare little Carrie to Nurse Rached. It just popped into my head that way so I purged myself of it here. And I do know that I can either add to the aversion or shrink the aversion by my response to it, so how I respond to Carrie actually (probably) fed her squinty eyes and stern nature. In NLP we used to say, “The meaning of your communication is the response you get”. This presupposes that communication and thus relationships are built upon two inputs, not just the “other”. Therefore, we can think of resistance as a constructed action based on both parties input. Either party in a conversation can create resistance in the other by not listening to the other or by simply presenting information that is not agreeable to the other. At any point either party can also decrease resistance by inputting information that is agreeable to the other, or by earnestly asking for the other’s opinions or ideas. When I am teaching counselors, I remind them of Steve de Shazer’s views of resistance: it is created when the counselor attempts to convince a client who is in "denial" (lack of agreement about the "problem") that a problem exists and that the client needs to do something about it. When clients are viewed as having "multiple goals", rather than as "resistant", the counselor has more options for responding to them in useful ways. The key is "to cooperate with the client in respect to each of the client's goals"**. And BTW: later James tells me Carrie’s not so bad. So, back to football: today I am watching OU whip U of Miami and I’m thinking that even though OU is our big rival, I would still rather see a Big 12 team beat any Atlantic Coast Conference team. And OU is VERY impressive. I am afraid of what they will be like against us on OU Weekend. Yikes! About 30 minutes before I’m done, and now watching Michigan fall to the Oregon Ducks, there is commotion over to the left of me a number of chairs; and when a commercial comes on, I check with my football-watching neighbor (the one who always wears shorts and boating shoes with ankle socks) about what it’s all about. He reports that this son came in to pick his mother up and noticed she has a badly hanging toenail. He asks Ron to cut it off and Ron explains the rules about toenail cutting (“no way Jose”) and about liability issues, etc. and the guy gets real mad and asks if the center can give him a knife so he can do it himself. I’m getting sorry I missed this drama. After the guy leaves with his mother in her wheelchair, the staff is chuckling about his request and wondering if he’ll take her to an emergency clinic or just home to his garage; sticking her foot in a vise and ripping the toenail off with some pliers.And, what a Saturday! There’s one more event to report. Just at the end, while Carol was getting ready to de-cannulate me, she gets busied up down the line and then they pull out the medical screen and Ron goes back there to service someone who was just brought in by the transport service. Carol comes back and she sheepishly says, “Sorry. Someone’s colostomy bag just broke.”, with a frown. “Ycch” I say, “Don’t tell me more”. I can tell Carol is just happy that Ron is handling it… so to speak. Carol un-hooks me, (as I hallucinate poopy smells wafting around) bandages me up, and I’m on my way. I’m thankful that I’m one of the healthiest dialysis folks on the block. Yippee! I dance right outa there and drive fast all the way home. Notes: In at 73.9 and out at 72.5 kgs.* Green, M.E. (nd) Louise Fletcher in One Flew Over the Cuckoo’s Nest. Retreived online September 2007 from The Little Review’s website: http://www.littlereview.com/goddesslouise/movies/cuckoo.htm** Tohn, S.L. & Oshlag, J.A. (1996) Solution-focused therapy with mandated clients: Cooperating with the uncooperative. In Miller, S., Hubble, M. & Duncan, B. Handbook of solution-focused brief therapy. San Francisco, Ca: Jossey-Bass Publishers, p. 154New Readers: For A Welcome Post, click August 2006 on the Sidebar
The Austin Folkies Team Report: We're up to around $1000 dollars of donations for the PKD Walk! WOW! I am amazed at the generosity of my family & friends!
<-- This is the way it feels to me many times as I begin to write in my blog. Do I write 'in' my blog or 'on' my blog; that is the question. Does my writing a blog mean I exist in a broader universe than that of my dialysis center or my breakfast nook? If my blog is published does anyone hear it? What is the sound of one blog clapping? I think sometimes that I do this just for digital exercise and to see how fast I can type. And, I do like reading what I say... even though it is "nothing" of consequence to most people. Ah yes; these existential meanderings add purpose to an otherwise boring existence in a meaningless world. <-- I don't really think that... just sounds cool to say it. And so it goes.
Sept. 4, 2007
Tuesday
El Milagro: Got here on time today and am getting hooked up by Gladys the Tech, who is friendly and competent and has long thin fingers with scrubbed red knuckles. She efficiently pokes and attaches me and is off to hook up the next person.
Today I weighed in at 76.7 and I wonder if that’s the highest I’ve ever weighed in at… the result of stuffing myself with wicked chiles over the weekend at our annual chile fest. I doubled up on binders and tried to keep a somewhat kidney-friendly diet while enjoying the feast.
Today I’m concentrating on finishing reviewing an article on teaching social and emotional competence for the journal I review for… and I know already I’m not going to approve the article so it’s a little boring finishing reading it. Whenever I realize an article doesn’t really cut the mustard for publication, I am no longer interested in reviewing it… even though I know that the authors get something from our comments on how they can improve the work. So, I put it down and shift my chair into “doze” and lay back listening to All Things Considered.
Before I know it its 8 o’clock and Gladys is back to unhook me and send me home.
Notes: In at 76.7 and out at 72.6 kgs.
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September 1, 2007SaturdayEl Milagro: Today is the day that the Patient Advisory Committee (PAC) came to feed the center. This plan was made at the last PAC meeting, which I missed through forgetfulness. From my perspective as the PAC member who wasn’t there, it was a less-than well organized activity, and yet it is happening out there in front of the center as I write this. So, who am I to complain? Ms Chavez called me last night and left a message for me to bring sodas, so I did. Other PAC members got the other hamburger and hot dog fixings donated or bought them and the Chavez's led the barbecue duties. Shayna and Liz came over at some point and we all ate hamburgers around my chair (a new experience). Then Liz and Shayna volunteered with the passing out of food and broiling for awhile before moving on to other Saturday chores. As I sat in my chair observing these events I thought that this is a great fun thing for our committee to do, and that many of these folks probably don’t have their binders with them.I asked Herman the Nurse if he could contact one of the dieticians to come over and hand out binders to patients to swallow after their meals, and he replied that that was really not a thing that El Milagro could do legally. He and I agreed that it would be a good thing to do, and that the closest we can come to this is to ensure that the next time we have a food thing we ask folks to bring extra binders to gobble along with their food. I had had Herman call Liz to bring my binders, so I did take mine after eating. So here we have a great little event that encourages people to eat dialysis friendly food and not take their binders afterwards…. a diametrically opposed message from the t-shirts staff regularly wear to remind people to take their binders.Here is the deal with binders ~ When people are on dialysis the process doesn’t adequately remove phosphorous from the person’s system and high phosphorous stimulates overproduction of parathyroid hormone which leads to bone brittleness and itching (first sign of overproduction). Phosphate binders are taken during or right after eating to attach (bind) to the phosphorus in the food and allow it to move into the large intestine rather than be absorbed into the bloodsteam. People on binders poop more. We can reduce phosphorous in our food intake, but since phosphorous is in almost all foods to some extent, usually people on dialysis have to use these binders to help lower it in the system. When I started on binders, Moritz prescribed Renagel and Phoslo and they didn’t work sufficiently for me. So, finally he changed me to Fosrenol and Phoslo and that was the combo that rocked for me. Since I started using Fosrenol I am a clean machine and my phosphorous is usually within the appropriate limits. Hooray for Fosrenol.
So, today when I arrived I told Debbie the Tech congrats for her recent marriage and that the sodas are out in my truck in an ice chest. The staff seemed quite animated today… excited about having a cookout at work… but I couldn’t really tell if the patients were excited… and, of course, I have a chair that faces the back wall (so I can’t see most of the goings-on). Matt cannulates me and we catch up, since I haven’t seen him in ages. Jo the Nurse is here and she thinks that the PAC doing this hamburger thing is a GREAT idea and says how she appreciates it. Rosie the Tech (and PAC member) is here too and all happy about the cookout actually happening, cause she too was unsure about its coming together. Jason the Tech came in late but will eat a hamburger, I predict.
Before Liz and Shayna got here, I read on my Venkatesh book and when they arrived, started watching MSU smear Alabama, thinking, “Wow, it’s college football season again!” A few of the folks here (and Liz) are wearing UT orange in preparation for tonight’s game. So, we have Saturday football, our own tailgate party in the parking lot, and hamburgers without binders before Labor Day! Is the world going too fast or what?
That’s the report for today here in dialy-world.
Notes: In at 72.9 and out at 73.8 kgs.Heard on NPR: 25% of us U.S. workers took no time off this past summer!New Readers: For A Welcome Post, click August 2006 on the Sidebar.
August 30, 2007ThursdayEl Milagro: As I rush in and weigh myself I’m a little cognizant of a display in the corner and two women standing there talking… and hear something about peritoneal, so I assume it’s another peritoneal sales job going on out there. Later I find out from Rosie the Tech that it’s a ‘show and tell’ about home dialysis… the way El Milagro can make more money by having folks do the dialysis themselves at home and not even utilize the resources of the center.
Anyway, I shoot past there and settle into a corner chair (not ‘my’ corner), saying “Hi” to John on the way. Rosie comes over to poke me and we talk about home dialysis (HD) and she reports about her best friend who is on HD and how it takes more time to set up and take down than he wants to use, so she ends up helping him out with it. She warns that it isn’t all its cracked up to be since there is about an hour of set up/take down, 3 hours on the machine, and you do it every day.
Rosie finishes with me and then Phyllis the Nurse comes up to listen to my heart and she starts in… “Jack; HD is something I’d think you’d be excited about…” saying you get better clearances and can take less binders. She says Bear loves it and he takes less binders as a result. I counter that I’m lazy and it seems like a lot of work… and I conclude that I like coming here and being served by the staff cause they are so nice and competent. She laughs at that and shakes her head at my honesty. So, I guess I need to think more seriously about HD as an option.Just off the top of my head, I lean away from using HD. But then, a few minutes later, one of the HD minions hired by the establishment to sell the system to all us chair-tied people comes up to talk to my neighbor about HD. Michael the HD guy says, “When I get off I feel the same as when I started. I don’t get that wiped out feeling. Also, while dialyzing I can stand up and move around some. Sticking yourself is the hardest part. They ship supplies to your house.” And various other things in response to my neighbor’s questions.My own thoughts that are leaning away from the idea of HD include 1) having Shayna see me dialyzing every night; 2) dragging the machine on my 4 to 5 out-of-town trips every month; 3) having to deal with this dialysis stuff EVERY day instead of three times a week; 4) having to learn and be responsible for my own treatment… and I’m sure there are others. All these notions are in the face of Phyllis’ statement that HD is better for me… so, maybe I need to really consider that too. So it goes. Notes: In at 74.8 and out at 72.2 kgs.New Readers: For A Welcome Post, click August 2006 on the Sidebar.
Aug 25, 2007
Saturday
El Milagro: I’m in at 10:30 this morning, after Phyllis the Nurse called last night to reserve an early chair for me. I drove over here from Martha’s garage sale, where I picked up a couple books, a table runner, and a martini shaker. As I am getting stuck by Jason the TV is on the food channel, which I seldom watch because it always makes me hungry and I’m usually jealous of the cooking skills of the people I see on their shows. However, before I can escape the food channel, I get hooked by arroz con pollo!* Jason, meanwhile is asking me if each poke is okay and if there is any pain (which can indicate that one of the needles is up against the side of the vein) and I am trying to talk to him while I’m watching a soundless food show. I recall simultaneously that last Thursday when he was sticking me, we discussed his growing up in Buda and attending Hayes High School. Turns out he knows my old boss, Mitch and even went on trips to the Frio River along with Mitch and family. It is a small world indeed.
Today I only watch TV: food shows, mythbusters, and some other Discovery Channel nature show. It is all a blur and I can only concentrate on zooming home at the end to try out this recipe, thinking it’ll be a great addition to our chile feast coming up.
Notes: In at 75.8 and out at 72.3 kgs.
* Simply Delicioso with Ingrid Hoffmann Paint party retrieved online from http://www.foodnetwork.com/food/show_ih/episode/0,,FOOD_29816_52361,00.html
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Aug 18, 2007SaturdayEl Milagro: I’m in early again today at 11:30 after dialyzing just last night after the conference. It’s really weird coming in on a Friday afternoon / evening (due to conference activities Thursday afternoon/evening) and then again on Saturday morning. I actually weighed in at 73.5 Kg., less than I left last night at (73.6). On the way in I touch base with New John who recommends a novel by a Texas hill country author and we talk for a few minutes about our reading habits… and Rosie the Tech about getting the notes from the last PAC meeting… and Monica the Nurse about lab work Moritz wants to add to the next lab draw next Tuesday.So, here I am and Matt sticks me and we talk about his going to college at TSU down in San Marcos. I tell him my daughter is just starting there and we swap college stories during my cannulation. I haven’t seen Matt since he started working mornings. James the Nurse comes up and checks my heart, etc., and I haven’t seen him in ages either.I tune in to Folkways on KUT and read the Venkatesh book [check this one out, Hans] about the interesting ways people make it using the “underground” economy in south-side Chicago. While I’m reading, Tom Pittman is playing some really great music this
morning, including Lucinda Williams, Lyle Lovett, John Prine & Mac Wiseman (see pic), Laura Love (Saskatchewan --> an incredible song), and Elana James. Debbie the Tech comes over to say “Hi” and mentions that In & Out Burger (my t-shirt today) is her favorite place to eat in Las Vegas. I reply that I’ve never been to one… hear they're good… and got the shirt for the racing 426 Sport Fury on the back… gift from Johnny’s visit to LA this summer. Later: Doing dialysis two days in a row wiped me out. I went to a birthday party after dialysis and had to leave after only an hour or so cause I was feeling tired, brain dead, and a little dizzy. Came home, crashed out and slept for hours. So it goes.Notes: In at 73.5 and out at 71.7 kgs., BP 117/65New Readers: For A Welcome Post, click August 2006 on the Sidebar.
Aug 14, 2007TuesdayEl Milagro: I’m in my favorite corner today, having rushed over here early from the TNOYS Conference down the road (Pre Conf Institute with Barry Duncan*), and then waited until 4:15 to get poked. So it goes. As Eloy is cannulating me Dr. Rowder rolls up with his chart cart and Monica the Nurse hanging behind. In response to his “How’s it going?” I report going to see Moritz yesterday for my annual doctor’s visit and that we have a new script… Rowder nods and says something like, “Good. I was going to have to schedule you so I’m glad you took care of that.” So, both he and I are happy about my assertiveness. That’s good.I settle into a long nap and then read a little of de Shazer’s last book; More than miracles: The state of the art of SFBT. I’m thinking this is going to be one of my texts if my solution-focused therapy class gets accepted at the school. Before I know it Carol is there to unhook me and patch me up. My BP is pretty low tonight… probably cause they took off over 7.5 pounds. I am driving home dizzy, Gillespie.Notes: In at 75.8 and out at 72.3 kgs.
*See Institute for Study of Therapeutic Change online at www.talkingcure.com/
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Aug 13, 2007MondayCentral Texas Kidney Associates: Walking into the doctors’ offices I am aware that I haven’t been here in ages. There’s a new receptionist, although I hear Connie the Nurse in her office talking to someone on the phone. I sign in and pay my co-pay and have a seat. Pretty soon Rick the Med Tech comes out and says “Hi… long time, huh?” or something similar indicating relationship over time and some pleasure at reconnecting. He takes me down the hall to a lime green treatment room that reminds me of offices in Mexico or the Carribean. Rick does all the normal checkup things like review my meds, take my BP, and the less formal things like asking me if I noticed how he has changed since we last met. He reports he has lost some weight and looks good (although he always looked good to me). We talk a bit about my experiences with dialysis and he informs me he has read this blog. [Hi Rick!] Rick leaves and I wait for Dr. Moritz…I stare around this treatment room… lime green with natural wood beam and plank ceiling… and one good-sized brightly colored framed painting-print of one of those post impressionist scenes of a patio or tropical something where the only thing that makes an impression is the large blotches of hue with lines around them that indicate it actually is a scene. A few posters of kidneys and kidney parts that I imagine the doc pointing to with one of those telescoping pointers as he is educating someone. And of course, the little kidney models that almost look like little colorful sculptures on legs… I remember his showing me how my kidney was abnormal on one of these things ten years ago now…Finally Moritz makes an entrance, wearing his customary Hawaiian shirt, khakis, and health shoes. In response to his salutation I say, “I have some feedback and a few questions for you”. He sits and exhibits expectant silence by cocking his head ever so slightly… and, I continue to recount my dismay and displeasure at hearing from the dialysis center staff that I was reassigned to another doctor (ref. May 2007, Post # 130) without asking my permission or giving me notice. And, evidently, without any consideration of the relationship I’d built with Moritz over 10 years! I recount that even though some people might think of him as obnoxious or tactless, I happen to be okay with those qualities in him and I believe we have had a good doctor/patient relationship over the years. And, I am NOT interested in being transferred to another doctor! Moritz listens to me quietly, waiting for me to completely finish my tirade. So, I continue, “I don’t mind Rowder signing my scripts but I am not going to consider him to be my nephrologist. On my insurance and in my mind you’re my doctor.” He replied with the following statements (maybe not in the particular order I report them here).• “I was on vacation when they made those changes”• He has 25 years more experience than Rowder (in response to my interjection that I don’t think Rowder is as smart as Moritz)• Dr Rowder is an employee of “the group” (indicating the partners in CTKA)• With “groups” a necessary difficulty is that the group overtakes any individual doctor’s intentions and that all the doctors, individually, if asked, would say they know that group procedures are not best practice.• The whole TTS 3rd shift was switched to Rowder because they needed to find something for him to do when they hired him and the group wants one doc per shift at the center.• It has been the procedure in the group to write a letter to folks to explain changes like this, but they just didn’t get around to it this time• Moritz is now handling MWF 1st and 2nd shift only.By now he and I are talking into the last half of an hour and I tried to summarize our discussion and left it at telling him that I think I have to write a letter to “the group” explaining my complaint and recommending they make some changes in how they do their business. So, on with the doctor’s visit. Moritz addresses my medical questions (explaining some things and looking up some things on his laptop) and concerns, changes a prescription, adds a prescription. Now I’ve been in there almost an hour and as I’m leaving I’m thinking that was good use of my $30 co-pay. I wonder if they assigned me the usual 15 minutes or if they never assign anyone for a 15 minute with Moritz, cause I know he always goes way over with most people who can get past his ‘directness’. I am satisfied with our conversation even though Moritz didn’t give me any indication that he could/would change me back to him. However, on their computers he is my doctor, but when he printed out a script for me, it came out with Rowder’s name on it and that causes him some bewilderment. And, as I said to him, from my view, he continues to be my doctor.Notes: In at 164 lbs, 5’11 1/2“New Readers: For A Welcome Post, click August 2006 on the Sidebar.
Aug 11, 2007
Saturday
El Milagro: I am here at 1 pm after Herman the Nurse called me at noon, saying they have a chair if I want it. I almost always want the early chair. I get stuck by Carol the Tech as Phyllis the Nurse and I discuss college years and college credits. She too graduated with 160 hours in her undergraduate degree from Kansas State.
Not much to report today. I am reading my new book: Off the books: The underground economy of the urban poor by Sudhir Venkatesh. This is gonna be a really interesting book about how people live under the radar. Generally many of us think of the down and out segment of the society with some pity and maybe even a little disdain. They may remind us of how our country marginalizes portions of the society, and maybe they even remind some of us of how we could slide into their state. And yet these folks have their own culture and their own way of eking out a living in their communities that Venkatesh has integrated into, observed, and reported compassionately in this book. I’m delving into the book whiletrying to follow the golf at the same time. Interesting combination, huh?
It’s the 89th PGA Championship on the TV. Tiger is paired with Scott Verplank, evenly at the beginning, but then Scott falls off and I think about how much pressure one must feel playing alongside Tiger and trying to keep up. Plus, they’re playing in the 100+ temperatures of Oklahoma today.
This place is pretty much like normal today. One of the normalities is the recurrent beeps calling techs to adjust people’s machines. The machine of the woman beside me beeps every 5 or 6 minutes and someone has to go adjust it, but they don’t flip her needles or anything, so I wonder what that’s all about. Usually when someone’s machine beeps a lot the tech will eventually come over and spend some time trying to either adjust the machine or adjust the needles so that the beeping stops. Sometimes the needles rest against the side of the arterial vein and this slows the flow and the machine doesn't like that so it beeps. Then the tech comes over and untapes the person, turns the needle over or adjusts it in the vein, and retapes the person. This time, with this woman, they just come over and hit the button that stops the beeping.... again.... and again... and again... until I almost say, "What's the deal Camille?" But I mind my own business and just wonder about the whole scene.
So it goes on this Saturday here at El Milagro, in Austin, on the planet. Tiger just bogeyed. So it goes in Oklahoma tambien.
Notes: In at 74.1 and out at 72.1 Kgs.
1) Of note, I am planning a trip to Washington in September to advocate for passage of the Kidney Care Quality & Education Act of 2007 Read more at the NRAA website: http://www.nraa.org/Bill_Sponsors.php 2) And, Liz and I have founded The Austin Folkies team to participate in the annual PKD Walk. Check us out by clicking the top Link on the black sidebar!
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
Aug 7, 2007
Tuesday
El Milagro: I came in and am sitting in my favorite corner chair. Eloy comes over to stick me and is telling me about his sinus infection from allergies… maybe from the ragweed they’re saying is 10 ft. tall this year and a month and a half early. He sticks me and has to return later and turn over one of the needles cause it’s causing the machine to beep. Jennifer the Dietician calls over cheerily and then comes over to show me a new blood work report: my phosphorous is back to normal! Jennifer thinks that last ‘bad’ report was an anomaly, or a mistake, or the result of a faulty lab tech.
8-02-07 --> 5.0
7-10-07 --> 6.8 [ Normal is between 3.5 to 5.5 ]
6-12-07 --> 5.0
I settle back to read the Consumer Reports issue reviewing digital cameras, since I slipped into the Guadalupe River with Katie’s. I learn that I might be able to find a SLR body that I can use my old SLR lenses with. That would be great since I have some great lenses for my old Minolta. That’s the good news. The bad news is the price of all these cameras is way more than I want to pay. I’ll probably just go out and try to get Katie’s Kodak Easy Share fixed… or buy a new cheapo one like it.
Jennifer the D returns with a tray of plastic cups of Bow-Tie Pasta Salad. She looks and sounds like a Vana or one of those sample girls you find at the grocery store, hawking the newest product in a can. She tries out her spiel on me first, pitching the pasta while conceding that the concoction could use some spices… either Mrs. Dash or Tabasco sauce. I enthusiastically taste the pasta and it’s alright to me and I tell her so. I mostly think it is a grand idea to go around the place giving away healthy food samples for folks to taste cause I hallucinate that half the people here don’t really try to eat a dialysis diet because they don’t really want to try new things (Maybe that’s just me… although at my house we are eating a kidney-friendly diet for years now). I also like the idea of Jennifer walking about holding a tray of food samples, smiling, and giving them to people… just because it has the look of a stewardess service in the place. Service with a smile, and all that. Giving good things to eat to people and all that.
I watch Drew Cary’s new show and watch the very first contestant (a 19 year old college kid) win a million bucks to use for med school, and that is a fun thing. Also, I like the idea of polling people about their views and then having folks guess what percent of the population thinks thus and so. I like guessing those kinds of things myself, so it is interesting to see it on TV. And so it goes here in dialy-land.
Notes: In at 75.1 and out at 73.6 Kgs.
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
Aug 4, 2007
Saturday
El Milagro: I was invited to come in at 1 today, which was great, since Liz and I just told 6 people to bring 15 of their relations to dinner tonight and Liz will hafta do 
the prep work cause I’m getting my blood cleaned. I will get home just in time to crank up the NBBD grill and barbecue chicken, steelhead trout*, and shrimp kabobs.
Herman cannulated me and we discussed friends visiting from out of town and using maids now (to make our places hospitable) and in the past in El Paso / Fabens. Also we agreed about how all these folks who are screaming about stopping the ‘illegal aliens’ because ‘they take our jobs’ don’t get how this part of the population is necessary for the dominant culture’s comfort, as well as not understanding the argument about the jobs in question. After all, how many of the ‘unemployed’ people listed at the Employment Commission would rush out to clean hotel rooms, work the fields, wash dishes, or do bone-wrecking manual labor for the kinds of wages the ‘illegals’ work for. In just the farm-worker arena, a 1996 article predicted the “…prices of fresh fruits and vegetables (would raise) by about 6 percent in the short run…” if we shut the valve on undocumented workers.** Do we want higher prices as a trade for corking the border? Do we want to discontinue centuries of a foundation work force that props up the American Dream? We as a society have always scorned this part of the labor force, but we historically understood how they fit in and we turned our heads as they worked their way up the ladder from menial to semi-skilled to skilled labor and built their own communities and melded into the American Way. We in the dominant culture paid them a miserable wage because we could (they had to accept anything thrown their way). With the cinching up of the border belt, these folks (the illegals and their employers) will slip further into the underground economy*** to survive. And survive they will… as they have since the beginning of this great country.
The neo-conservative faction of the government and their cronies would have you believe that this isn’t the case as they work to restore “integrity to our immigration system and secure America’s borders”****. Actually this is all a sleight of hand move: misdirecting us from the substantial issues of national security in the post 9/11 era; like randomly checking all those huge shipping crates being floated into our harbors or the convoluted way of tracking people already identified as dangerous. No… they’d rather you pay attention to the poor undocumented workers looking for an honest day’s work in the land of promise. The sleight of hand moves actually drive folks who simply want a break to illegal and nefarious dealings. Meanwhile, many of the neo-con’s supporters who own large agri-business corporations, the hotel industry, and the garment industries will continue to use undocumented workers in ever more disparaging ways that will simply be more obscured. And the more surface level use of ‘illegals’ will fade away and those jobs will finally go to people who will work half as hard, do a mediocre job, and get paid three times as much money. It makes me mad!
I say, let ‘em all in to chase the American Dream; give ‘em all “green cards”, but change the color to peach. Peach has a less demeaning connotation, emphasizes a new beginning, and sounds cool: “I got my peach card” he said. “Well, that’s just peachy!” Let’s see, in Spanish that would be, “Conseguà mi tarjeta del melocotón”. Now that really doesn’t sound bad, does it? (Looking for a comment from my Mexican friends here --> agree? disagree?)
“I mean…” (said like Arlo, dragging out that ‘eeeeen’)… “I meeeeeeeeen… when the border patrol stops those boys out on a desert road somewhere in the Socorro…. ….they pulls ‘em up and says… ‘Now straighten up boy! We gotcha and now we’re gonna give ya a ride into town, a hot meal, and yer very own Peach Card. ….Whaddaya say to that Mijito? Welcome to the Promised Land. Now hop on in and let’s skidaddle.” Wouldn’t that be grand?
Oh yeah. And this idea about charging a fee to these folks to enter our country and take jobs no one wants anyway is just ridiculous. If we want to charge someone, let’s charge foreigners with Master’s Degrees coming in. They can get their Fortune 100 Companies to spot ‘em the bucks for that. And let’s use that money to improve our miserable inner city schools that youth are leaving in response to inadequate and antiquated policies and curriula. I could go on and on, cause I seem to be on a tirade now. Calmase Juaquin! Whew.
Okay, so once hooked up, I listened to Folkways and then Live Set with the Austin Lounge Lizards and then turn on the news. The woman next to me has bad cramping somewhere during this time and they take her off early and talk to her about massaging and moving her legs. I wanted Herman to go over and actually help her by holding her feet, but he was busy in another sector. He can’t be everywhere at once.
Well, that’s about it from the brain of Jack. And so it goes.
Notes: In at 73.4 and out at 72.7 Kgs.
* Rainbow Trout retrieved August 2007 from Wikipedia, http://en.wikipedia.org/wiki/Rainbow_trout
** Huffman, W. * McCunn, A. How much Is that tomato in the window? Retail produce prices without illegal farmworkers. Retrieved August 2007 from The Center for Immigration Studies website: http://www.cis.org/articles/1996/back296.htm
*** Venkatesh, Sudhir Alladi (2006) Off the books: The underground economy of the urban poor. Cambridge, MA:, Havard University Press. Retrieved online July 2007 from http://www.hup.harvard.edu/catalog/VENOFF.html
**** Border security and immigration reform. Retrieved online from the website of John Cornyn, US Senator, http://cornyn.senate.gov/public/
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
July 28, 2007
Saturday
El Milagro: I am here and ready at 1:45 today; back from my vacation and happy to see all the regulars and their smiley faces. I was looking forward to seeing the current issue of the newsletter that I had left for Suzanne the Administrator to edit and finish. I was really disappointed that she couldn’t make the changes in the Publisher file and ended up copying most of the text and printed it out as a Word doc, which made it look like a typed report with no snazz. Phooey! (See Publisher copy at left). I settled into 
my chair and Eloy hooked me up. I reviewed the newsletter and couldn’t really tell that Suzanne had edited it too much. She left most of the headings of topics brought up at the Patient Advisory Committee, and only added rules and davita dogma in response to the complaints and concerns brought up by the committee. This is not to say that the administration is unresponsive to issues brought up by the committee, but it is to say that they are concerned, as am I, about the ‘tone’ of the newsletter. My concern about ‘tone’ is to make the tome readable and positive. Hers is to ensure that it doesn’t sound like “all complaints” because that’ll get all the patients riled up. The advisory committee’s intent is to give the ‘customers’ a voice with the administration. In reviewing her final copy, I thought she did a good job of keeping the tone of the newsletter ‘client-centered’, however diplomatic she toned it.
I am starting a new book (Chris Moore’s Coyote Blue but really wasn’t in the mood, after reviewing the newsletter and wishing for my newslettery format. Am I too involved in this thing? I had wanted to participate in the PAC (to be involved ~ “reformation requires that the organizer work inside the system”*), and then I wanted to take on editing and publishing the newsletter (for practice publishing a newsletter and ‘cause my mom used to do one) as a service to the community. That’s what I told myself… but now ego seems to be involved. Now I seem to be ‘attached’ to it in a way that bothers me. I am surprised by my feelings about the newsletter coming out as a word doc. “It looks so tacky…” I say to myself, and then I say, “Let it go. It’s no big deal. Really, Jack! Move on buddy.”
Then I look at the book and read, “There are… those moments in life, when for no particular reason the senses are heightened…” and I say thanks for that reminder that this is probably one of those times. And then I get bored with the book and watch one and a half movies in succession: Tears of the Sun and Clear & Present Danger! By the time I ‘came off’ the machine I was in a good mood again and ready to take the leftovers from the July newsletter and punch out the August edition.
So there ya go Cocomo.
Oh; and b.t.w., Eloy forgot to give me a surgical glove when he de-cannulated me today. What is it with these folks? Are they needin’ a vacation? That’s twice in a year and a half! Jeez.
Notes:
1. In at 73.6 and out at 72.3 Kgs.
2. Lloyd Doggett supports CKD people! See his letter in Post #42, by clicking August 2006 on the Sidebar.
3. *Alinsky, S. (1969) Reveille for Radicals, 2nd ed., New York: Vintage Books
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
Write to your Legislators: I ask all my readers to write in support of this legislation:
July 29, 2007
Senator John Cornyn (also sent to Kay Bailey H. and Lloyd)
United States Senate
517 Hart Senate Office Building
Washington, DC 20510-0001
Dear Senator Cornyn,
Currently, there are over 20 million Americans suffering from Chronic Kidney Disease (CKD) and another 20 million at risk of developing CKD. In addition, almost 400,000 of these individuals currently require life saving dialysis. The numbers are expected to double in the next decade. Simple action can delay the onset of dialysis for many of these individuals.
We are asking Congress to sign onto the Kidney Care Quality and Education Act (KCQEA). This bill (HR 1193/S 691) has the support of the entire kidney community including doctors, patient advocacy groups, nurses, researchers, manufacturers, and providers. It is an important vehicle to stem the rising tide of kidney failure in the United States, as well as to ensure that dialysis patients have continued access to quality care.
As a dialysis patient waiting for a new kidney, I also hope you support more federal financial support for the many people on dialysis who are not covered by their insurance or other federal support programs. These folks end up begging for money to stay alive and I think that it is a shame that in this country we don't just support them when they need us to.
I am hopeful that you will support current kidney patients and sign onto the KCQEA to help educate individuals about the risk factors of kidney disease.
Sincerely,
Mr. Jack
July 24, 2007
Tuesday
Kerrville Dialysis: I am driving the 20 miles from River Inn to the dialysis center at 7 in the morning, curving around through the fog of the river basin of the South fork of the Guadalupe River. It is so green this year that the luminous signs along the road seem to illuminate the greenery along the way. I get into town a little early and stop at a Mexican restaurant for huevos rancheros before getting to the center. When I get to the dialysis center, I walk in and sit down in the waiting room for about 5 minutes before the administrator comes out and brings me in. Maria cannulates me today and remembers me from the folk festival in June. She asks about my kids and my vacation. I ask her about the center: this is the only dialysis center in K-ville. They have about 40 patients and stagger their treatment. I am amazed that in a “retirement” town like Kerrville there are only 40 dialysis patients, and I ponder that for a good 30 minutes or so after getting hooked up.
Today I read my Biff book almost the whole session, aside from checking the weather a number of times. We arrived at River Inn yesterday and got some cloudy drizzly swimming in (Shayna & Liz did; I watched from the relative warmth of the deck) and the water was cold! The water is higher than I’ve ever seen it here, but it is still crystal clear. Today it was foggy into town and now that I’ve been here for a couple hours, it has started pouring outside.
The weather people say 80% chance of scattered showers and high of low 80’s. This is Texas in July? I get unhooked and head to the store for more supplies for our week.
Note: I didn’t note my weights today.
July 26, 2007
Thursday
Kerrville Dialysis: I drove into town a little later this morning, so didn’t have time for a sit-down breakfast. Slid through the line at a donut shop for two twists and a refresh on coffee. When I got to the center, I sat down in the waiting room and waited over 25 minutes before Barbara poked her head out and said “Hi”. A few minutes later I was brought in for a chair. Later I learned from the administrator that they thought I was coming in “…at 7 like you did on Tuesday.” “I came in at 8:30 Tuesday and thought that was the time today too.” “Oh”, she said, “…well, we had your chair ready at 7 and then tore it down cause we thought you weren’t coming.” So, what could I say? I didn’t want to punch a gift horse in the mouth. I’m on vacation and I will simply accept that things don’t always go my way. Barbara came over and stuck me and did much better than last June. I wondered if she was new back then and has practiced and gotten this much better, or was she just nervous about sticking such a handsome guy as me. Yuk yuk.
Today I watch TV to asses the weather (was nice yesterday afternoon and cloudy again this morning) and they say, “…rain all day today…”. I watch National Geo’s “Megastructures” on the tube, where they describe a cool bridge built in Australia. Then I read about Biff’s continuing adventures with the Messiah learning Buddhist meditations and Kung Fu on their trip to the Far East (Thanks to Andrea for the tip on this book. She was right: I do like it).
Cindy unhooked me. Earlier she had come up and woke me up to ask some questions for her ‘records’. She started with, “How do you spell your last name?” I spelled it and she looked quizzically at her clip board and said, “What? Are you sure?” and I looked her in the eyes and said coolly, “Yes…. I am sure.” “Oh. You are the wrong person.” …and the administrator broke in with, “We’ve already done him.” I wished I had stayed asleep. Later Cindy was the one to unhook me and for the first time ever, I had someone come up and unhook my and put pads on my stick holes and have me hold ‘em without a surgical glove. This behavior caused me to think either (1) she doesn’t know what she is doing, or (2) she thinks I’m already sterile, or (3) maybe gloves aren’t as important as El Milagro makes it seem. I was so shocked by her behavior that I didn’t say anything. Later I wished I had; and you know what? If I can’t pipe up with a statement about that, imagine how other, less vocal patients act when they see medical staff doing things they know are wrong, wrong, wrong. It’s scary.
I lived through it however and drove back to the inn to find Johnny there ready to hang out with his sister all afternoon and then watch me cook burgers in the afternoon downpour and eat a rushed dinner before heading back to Center Point and Camp C.A.M.P.* He took an ear of corn with him… that boy. What a great day!
Notes: In at 74.7 and out at 72.1 Kgs.
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
* Camp Camp retrieved July 2007 online at http://www.campcamp.org/
July 21, 2007
Saturday
El Milagro: About an hour ago Phyllis the Nurse said I could come in early, so here I am at 1:45, all hooked up and ready to go. Eloy stuck me as we reminisced about old Austin versus new Austin. Now we have the Austin City Limits Festival. We used to have the Aqua Festival with skipper pins, three stages of bands, the water parade, and the horseshoe tournament. Eloy’s cannulation job looks like a mess of crossed tubes, and he had to redo one cause it was laying on top of the vein. After finishing his artwork, Eloy stood there watching the machine while we talked.
As I look outside right now I see the back of my truck in the downpour and wonder if I’ll be able to mow the lawn this weekend. I’m listening to KUT’s Further Adventure of Folkways; Kellie Willis’ new CD… great sounds. She sings, “I can’t remember the last time I felt so weak…. You’re just a stone’s throw away… (steel guitar bit) …and God knows I want to fall in your arms…”
So…, yesterday I went out to lunch (yes, me) with two lovely women and one of them said, “I read your blog, but I wish you’d put more personal stuff in it…”, and the other one agrees. “Yeah! That’s what I always tell him too.” I respond with an author’s poetic prerogative prattle. I leaned into the table and gave them a raspberry. “THBPPBPTH!!” …. Well, actually it was probably something dumber, like “Well, the intent is to tell about dialysis, not to be a soap opera”. And yet, since then I’ve been thinking more about their feedback. They are, as it happens, a representation of the readership. And I always claim to be ‘client-centered’… so, who am I to say, “THBPPBPTH!!” to the users? Is this blog for me or for the reader?
Well, I must admit it is at least partly for ME. I write it and I read it and I change it (after mine and Liz’s edits). And I put in the pics that interest me. It is MY contribution, at least at this point in time, to the Nowicki Family Writings. I don’t think theses, dissertations (Michael), and academic articles count, although my dad probably counts Michael’s textbook. “Is this more personal?” I asked myself while appreciating the fiddle licks from Truth # 2 off the Dixie Chicks’ Home… in my earphones.
Now, about making this blog ‘more personal’. What would ‘more personal’ be? Do they want to hear more about the puppy? They are dog women and we spend time at lunch discussing good homemade dog food recipes… since the Chinese are bent on poisoning our pets. Is it more personal when my West Texas innards screams out, “Those damn ___"(insert your own PC label here)? ‘More 
personal’? Hmm. I’m sure they don’t want me to write about running naked throughout the house with my bride…. NOPE! I’m pretty sure that’s not what they mean by ‘more personal’. Stuff about kids and family maybe? They both already know more than you, dear reader, so that can’t be it either. Now the Austin Lounge Lizards are crooning, “I want to ride in… the car Hank died in” so I hafta break away from this post to sway to this wailing waltz.
An Idea: Maybe they want to hear about the ‘more personal’ side of Jack’s experiences of dialysis. I have meant to report on two very personal topics for over a year now and not taken the leap because no one has asked for it and I’ve been waiting for the ‘right’ time. Maybe theirs is the ‘more personal’ request I need to devote a post to bodily functions. Being on dialysis has huge impact on urination and taking binders for phosphorous impacts defecation! Would posting about peeing and pooping be 'personal’ enough? I promise to pen a post about pee and poop pretty soon.
Just now I’m pulled from my present pee and poop pronouncement by a pained patient yelling “Help me. Help me”. I look around and notice he is the guy a few chairs down from me and Eloy has looked up from his work to check on him but doesn’t jump to his assistance. “Arrrghhhuh”, the man wails and staff seem to ignore him, and I wonder what that’s all about. Finally Kim the Nurse goes over to him and diddles with his machine and documents on the “Chair Side Snappy” (the cutesy name El Milagro’s has given to the newish computers that track the dialysis machines, two at a time. I hear the name is supposed to call out to staff who are a little computer shy. It calls out to me, "We are the goofuses"). Anyway, as I’m watching them watching him, I might mention that there’s a new tech trainee drifting around this place who is not at all hard on the eyes, in her fitted baby blue med suit. Is that ‘more personal’?
I must continue to consider this idea of getting ‘more personal’. I could maybe write about being a cheapskate. Or, my thoughts on philosophy or cheescake. Or maybe introduce politics. Nah! Too depressing. Politics is one of the few things that is more depressing than kidney disease. Or how about my musings about Art? (Art is A+R+T according to a paper written by AJH, circa 1970) Or, getting really personal: sharing all the places I’d rather be…. like sailing into Friendship Bay on Bequia*, sipping a Hairoon Bitter Lemon soda.... Ah yes! That would be the ‘personal’ stuff.
Actually, I’ll probably just add my ‘more personal’ musings on dialysis and my continued adjustment to this stage of life on the planet. Adios for now.
Notes: In at 73.7 and out at 72.1 Kgs.
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
* St. Vincent & the Grenadines retrieved online July 2007 from http://www.svgtourism.com/
July 19, 2007
Thursday
El Milagro: I am early today and hand off the newest draft of the newsletter (I am on the Patient Advisory Committee, PAC and am the editor of the monthly newsletter: the El Milagro News) to the receptionist for Suzanne the Administrator to review and I walk in to find my chair and get situated. Jason the Kid cannulates me with his usual phlebotomous acumen. This boy is going places. All the usual suspects are seated in their chairs looking around and the place is humming along without a hitch. I settle into reading my book (Lamb: The Gospel According to Biff, Christ's Childhood Pal), which is getting more interesting as I read further into it. I have in the back of my mind worries about last Tuesday, when my BP dropped and I felt woozy at the end of my treatment. Today my standing BP was 113 over something, but when I sat down it went to 135/76. So, I am happy to have something to worry about, since I always feel a bit useless unless I’m worrying about something. I lose myself in the book. Here in the world of the book, we find Biff trying to explain to Joshua (the Messiah) how his first sexual experience felt and Joshua just doesn’t get how it isn’t sinful because he expects sinful acts to include fire and pain.
Since my worries dra
in out of my head, like oil out of a busted gasket on a '47 Chevy's oil pan, the growing empty space up there begins to fill with vaporous considerations. I have been considering how people fit into systems. There are people who work to fit in and people who can’t quite seem to want to fit in. There are some names for NLP Meta programs that fit my considerations and they are the various vaporous types of sorting. People have all sorts of sorts they sort by. If a person sorts by “sameness” they look for things to be the same and when they determine that things are the same it makes them feel comfy, accepted, and agreeable. People who sort for sameness also like it when they go into situations they perceive are the same as other situations. Even when situations are different they are likely to perceive the samenesses first, since the samenesses come into their awareness first. These folks are good people (since they are like me) and they walk around happily when they can look out at the world and say, "Ah yes. This is the same as it was. Oh yes. This is the same too. Let's go out to eat and I'll choose the same thing I always choose." If you sort for sameness you are the one who owns a red Ford Taurus and you notice all the red Tauruses and you miss the blue Volvos. There must be many more Taurus than Volvos, you think. So, sorting for sameness does have its drawbacks. Sameness sorters miss some part of reality. People who sort for "difference" don’t notice when things are the same; only when they are different. Sorting for difference can lead to folks having a polarity response, which was called in days of old, ‘resistance’. People who naturally use a polarity response are always finding reasons why things aren’t the way they were stated by someone else. These folks say “yes, but...” a lot. “Apple pie is a good American dessert”. “Yes, but you know, it wasn’t really American.” Or, “Apple pie is okay, but pumpkin pie is the real American desert”. Or, “I beg to differ: Cake is the REAL American desert.” You get my point. These folks make good lawyers. So, back to systems. Same sorters want to fit in and difference sorters want to grate the system. When I look around the treatment room and I sort the people for sameness or difference sorters, I hallucinate that there are more sameness sorters here than difference sorters. It may be that I see mores sameness sorters because I am a sameness sorter; but, that aside, I think sameness sorters are more likely to end up in dialysis centers than difference sorters. Differenence sorters probably do 'home dialysis' or 'peritoneal dialysis'… I mean, those are different kinds of dialysis, after all. And you know, those people will do anything to be different. Difference sorters who are in the dialysis center aren't usually happy. They join the PAC to air their differences. The sameness sorters ask that everyone get along and the difference sorters hear them and smile, knowing they have a different view.
Now let’s think about the staff. Mostly, I experience them too as sameness sorters, sorta. I think the difference sorters are only about 5% of the staff, because they have trouble with following sameness (procedures, etc.) and too many of them would grate too much on the cohesiveness the system needs to operate fluidly. The good staff probably mix their meta-sorts and develop into people who sort for sameness with difference. They look for everything to be the same and can pick out the little differences that makes a difference (like a dial or reading or number being too high, too low, or “strange”). People who look for sameness with a difference enjoy new things: “Wow! … it’s just like the other one… but different!” This is a good line to use with adolescents in counseling --> "I once worked with a kid just like you, but different." How could they possibly ignore you after that opening? So, actually all us sameness sorters and difference sorters should really try to begin to start noticing the difference and the sameness as we peer out onto the world, since it builds on our acceptance of a greater perspective or scope of reality.
I read, listen to All Things Considered, watch the news, watch PBS, read, and I’m done. Jason unhooks me, tapes me up and I’m outa there. So it goes on a Thursday eve.
Notes: In at 75.6 and out at 73.6 Kgs.
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
July 14, 2007SaturdayDallas: We are in Dallas this weekend to visit Liz's mom, attend services at Temple in honor of her dad's Yahrzeit, and visit him at the cemetary. This is the custom we follow: services at Temple Emanu-El, visiting the cemetary and placing small stones on the headstone, going to lunch at Kuby's*, and then a leisurely drive back home. As a person who gets a sense of purpose and continuance through custom and "sameness", I love this experience of "family" and honoring our elders. It is always brings me feelings of connection and sanctity.FMC Towngate: Here I am at a new dialysis center in Garland, about 8 miles from my mother-in-law's house in north Dallas. Getting a chair here was something of a bureaucratic hassle. The social workers at El Milagro first tried to get me in at the DaVita center I went to last time I was in Dallas. They refused me, saying that my insurance never paid for the visit. Seems to me that that woulda been worked out before I went. Surprised me, since I never heard there was a problem for quite awhile afterwards. So, the social worker set up a chair at another DaVita facility and I had a few emails back and forth with their social worker before they found out our insurance wouldn't pay for that one either. So, it ended up that the insurance contracts with an out-of-DaVita facility run by Fresenius Medical Care in Dallas. FMC is in a strip mall and has a huge waiting room. All the staff I meet are very foreign sounding. A woman from India, in Indian garb brings me into a small treatment room and interviews me for about half an hour and has me sign 101 pieces of paper that show that I completely absolve them of any responsibility for anything that might happen, no matter whose fault it is. Do I want dialysis? Well, then I must sign away. Do I want to question or consider signing any of these papers? Do I want to be shown the door? I thought of hesitating to sign one of the forms, but decided I don't want to slow the process of getting on the machine. We really have no choice but to sign and then sue later if there's a problem.When I go from one DaVita center to another DaVita center they just transfer me but when I am going to another company's facility it's as if I am a completely new patient. The process is slowed by the interviewer's almost indecipherable English. With a combination of repeats, hand signals, and guesses we complete the interview process. We two strangers from different lands discuss the color of my urine, my eyesite, and my water retention. Luckily I have a fairly transparant nature and can discuss even the color of my poop upon inquiry. Finally she takes me into the treatment room. The Indian walks me to the in-floor scale where I weigh and then on into the sea of blood cleansing patients; three or four rows in to a chair in the middle of a section of chairs. Here I meet Aida, a beautiful Ipanema-ish woman wearing a visor like a blackjack dealer, whose English is only a little better, but whose nationality and heritage are totally unknown to me. She is all business and seemingly in a foul mood, unless this demeanor is her normal countenance for her culture. I don't know and am having some amusement hallucinating what her mood is all about. I think maybe she doesn't get along with the Indian woman and the Indian woman brought me into Aida's territory and sat me in a chair without regard to Aida's plan for the chair. I sit there for about 25 minutes while Aida and the other tech for the row take the last shift people off and ready for the next shift. Of course, the dialyzer is new and I observe and hear that they use new ones for each person all the time because they are a new type that is only used once and tossed. So, it doesn't matter what chair a patient sits in. Aida cannulates me and does a good job of it, even though she starts with too small a needle and has to take it out and put in a larger one. I forgive her the mistake and that seems to lighten her mood somewhat. The chairs are grass green and new and have internal heater and vibrators. I fiddle around with the buttons on my chair but can't get the stuff to work. Attached to the back of each chair are five foot poles with a three-banded light at the top, green-yellow-red. When I stood up while waiting to get stuck, I looked around and saw a sea of green lights, signifying the machines doing their jobs, hooked up to probably 100 people. This place also has those swinging TVs that are attached to mantis arms like the x-ray machines at your dentist's office. Once you hook up your earphones and swing the set around in front of your face you create a little TV universe for yourself to sink into and pass the time in your own little bulb. I watch the entire Mission Impossible II and drift in and out of a dreamless slumber before it is time to unhook and re-enter the real world outside.Aida unhooks me and patches me up and asks where I'm from and if I'll be back. She doens't seem to recognize "Austin" and says "Good bye" when I reply that this is my one time here for this visit. And so it goes in big "D" dialysis.Notes: In at 75.4 and out at 72.8 Kgs.New Readers: For A Welcome Post, click August 2006 on the Sidebar.* Kuby's Sausage House retrieved online July 2007 from http://www.kubys.com/
July 12, 2007
Thursday
El Milagro: Today I am sitting here, all hooked up, with nowhere to go. The time can be passed in any number of ways; reading, listening to NPR, watching TV, sleeping, or observing the operation of the clinic. I always find something to do to quicken up the drip, drip, drip of the minutes passing. But today I hear Jo the Nurse mention that one of the patients only watches his dialysis machine's time graph for the whole four hours. He is the one who has the slowest 16 minutes left on his session. I am thinking about this method of passing the time and wondering how it is that this guy can do it this way. It reminds me of waiting for my birthday when I was a kid. The harder I focused on the minutes passing until my birthday, the slower it seemed the time went. The best way to pass time is to get busy doing something rather than watching the time. Does this old guy know that? Does he enjoy watching the minutes drip away? I want to temporarily step into his world to check out what his brain tells him about passing this time and why he doesn't find something to do to quicken it's passage. I am assuming he is anxious to get outa here, since he frequently asks how much time he has left. This is a real mystery to me.
Notes: In at 74.8 and out at 72.8 Kgs.
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
July 5, 2007
Thursday
El Milagro: I walk in and say hi to Jennifer the Dietician, who waves from her phone call. Seems late, even though I’m on time. I say hi to John and ask how he’s doing and he finally says “Okay” now and I wonder if he is just saying that or if he is doing better. He strikes me as a person who is up front with things, so I trust he is doing better and that makes me feel good because I want this center to be successful with folks.
Gladys cannulates me. I read my book and listen to NPR on my radio. Watch the start of the news on ABC and then fall asleep… news must’ve been boring. What else could happen? Later I wake up and half-watch (with no sound but looking at the picture) the “Ugly Betty” show because I am tangled in my flipper TV control mechanism and can’t aim it at the box. Now we have flipper control boxes that are wired to the wall, so they can fall on the floor and we can pull them up by their tails (very helpful). When we arrive they hang over the back of the chair like sleeping cobras with pimples. They have speakers so people don’t have to use earphones if they’re rude and don’t mind bothering their neighbors with the low rumble of noisy TV rabble spitting out all over the place.
Or, we can plug our own earphones into them and make them even more tentacley and then they wrap themselves around our BP monitor cord and pretty soon we find ourselves tied tightly to our chairs in wires and hoses. And in my case tonight this conglomeration is further complicated by the blood red tubes that cross over me from a left-arm access to a right-sided dialysis machine and the whole thing feels like being a meatball in the middle of a bowl of spaghetti. Tonight I have become a meatball with arms and I can’t adjust the TV without yanking my tubes and stretching my sphyghettiometer hose.
It might as well be a sphyghettiometer hose (instead of a sphygmomanometer* hose) tonight since it, in combination with my earphones wire, holds my head down as I try to get up to give Gladys a standing BP. "ARGGGGGGHHHHHHHHHH…" I am trapped in my dialysis chair! I pull off the head phones, yank on the BP hose, and slowly pull myself up, like Gulliver escaping the naugahyde hills. I am up and out of the spaghetti. I guess I digressed here a little in this description… since I know Gladys didn’t notice my struggling to freedom from the chair. My fantasies add some adventure to the otherwise doll drum of dialyis tonight.
Oh well, another day another dialysis. So it goes.
Notes: In at 75.8 and out at 72.5 Kgs.
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
* Blood pressure monitor (sphygmomanometer) (nd) Retreived online July 2007 from How Products are Made, http://www.madehow.com/Volume-1/Blood-Pressure-Monitor.html
July 3, 2007
Tuesday
El Milagro: I arrive a few minutes after 2:30; an early time Ron the Nurse has given me since I am taking the day off in honor of my birthday. Jennifer the Dietician says, “Aren’t you early?” and I report that it’s my birthday, and she replies, “Really? 55 or so?” and continues by asking about the party at Lake Marble Falls, which I explain has been cancelled due to flotsam and bacteria in the water. I move to my favorite chair in the corner and Gladys cannulates me and wishes me a happy birthday. I put new batteries in my radio and tune in to KUT and start my new birthday book: Lamb: The Gospel According to Biff, by Christopher Moore.
About an hour into my dialysis I begin to feel tingly in my lips. It’s the kind of feeling you get when your extremities are asleep and prickly. I ignore it for awhile but it spreads to my brain and fingers and then, of course, I begin worrying about it. I stretch to see my last BP on the machine and it reads 104/58. Aha! My BP is so low it’s making me tingly. I lay low, trying to imagine my BP rising. The tingles are spreading over my entire head and I would be okay with that feeling, but I am also starting to feel clammy, faint, and slightly nauseous too. I don’t like the idea of calling someone over and complaining about this cause I don’t want them to “take me off” (stopping the dialysis) or lengthen my time today. I close my eyes, focus on my breath, and visualize my blood pulsing harder in my veins.
Finally I call Herman the Nurse over and tell him I think my BP is too low. He pushes the BP button and waits the few minutes it takes the machine to check my BP. Now its 94/50 and he asks if I’m ever hypotensive and I explain my recent increase in my BP meds cause my BP has been higher than normal. Oh yeah, “and I took 1/2 a Toprol this morning.” Herman gets a shot of saline and pokes it in the tubes on the machine and tells me to see how I feel in 15 minutes. My BP is now up to about 105/58 but I don’t feel the difference. I lay back all tingly and faint and try to enjoy the sense of light-headedness. It’s a quarter after 3. By 3:30 I’m feeling the same. Then I look up and it’s 5:45. I feel okay and my brain tells me I must’ve fallen asleep. Herman is gone and the BP reading on the machine is 110/74, so that tells me things are back to normal. I turn on the TV news and finish out my time. By the time I leave my BP is normal.
My Birthday: So, it’s my 60th birthday! I am having a harder time thinking about being 60 than I did at 50. 50 was a celebration of survival and perseverance. 60 seems OLD, even though when I search my insides for oldness I can’t find any. My dad said on the phone that 60 even sounds old to him. Katie arches her eyebrows at “60”! She is over for my birthday dinner of green chile and chicken enchiladas (the boycott is broken) with not so much cheese. And for dessert, of course, pineapple upside down cake. The kids all give me gifts: KT a Texas State T-shirt commemorating the fact that she decided to go to a big college after all; Shayna a build-it-with-your-daughter project (Palm Chime) and a book; and Lizzie more books, a Texas map, and Cowboy bandaids since I use so many. Earlier in the day, before dialysis, we celebrated by visiting the Blanton Museum of Art* where I was excited by Morris Louis, (early) Mark Rothko, Thomas Hart Benton, and Jan Brueghel the Younger. And so this 60th birthday includes family, dialysis, prickliness, and other physical sensations that prove to me that I am still on the planet… alive and kickin', as we say in West Texas. And very happy to be here. I recall a verse of one of Ferlinghetti’s poems:
Yes the world is the best place of all
----------------------------------for a lot of such things as
--------making the fun scene
----------------------------and making the love scene
and making the sad scene
------------------------and singing low songs and having inspirations
----and walking around
-----------------looking at everything
-----------------------------------and smelling flowers
and goosing statues
-----------------and even thinking
-----------------------------------and kissing people and
-making babies and wearing pants
------------------------------------and waving hats and
----------------------dancing
---------------------------and going swimming in rivers
------------------------on picnics
-----------------------------in the middle of the summer
--------and just generally
--------------------------'living it up'**
So, there you have it.
Notes: In at 74.8 and out at 72.8 Kgs.
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
* The Blanton retrieved July 2007 online from http://blantonmuseum.org/index.cfm
** Ferlinghetti, L. (1955) Pictures of the gone world 11. Retrieved online July 2007 from lyrikline.org, http://www.lyrikline.org/index.php?id=162&author=lf00&show=Poems&poemId=2727&cHash=e9c393307c
because of those two chiles I put on my chicken last night? Do I have a bug? Am I worrying myself sick? Is this some sort of sign the dialysis isn’t working right?" I heave a few more times until I can tell there is nothing else down there to come up. And I wash my mouth out in the kitchen sink and drink a few gulps of lemon lime soda to further wash away the taste. I sit on the sofa for a few minutes, looking around the quiet light of the night time in my living room. The moonlight comes in through the back windows and everything seems still and comfy and I begin to breathe more peacefully. Back to bed again. I wake up again and hit the toilet a few more times that night; at 4:30 and about 6. And then I wake up finally at 7:15 and actually feel okay and ready for a new day.
ng the pain you cannot really appreciate the joy of living.” Remember what Jack Kornfield says, "The great forces of ...fear and ignorance that we encounter can be met by the equally great courage of our heart. Such strength of heart comes from knowing that the pain that we each must bear is part of the greater pain shared by all that lives. It is not just 'our' pain but the pain, and realizing this awakens our universal compassion."*
