This is the ongoing chronicle of Me, a PKD Patient: Part 1~ April, 2006 until March 5, 2009 on dialysis and blogging my adventures as a participant, and Part 2~ My Kidney Transplant on March 9, 2009 and blogging my adventures in healing and adjusting to Mordechai the Miracle Kidney and integrating this all into my life.
12/2/07
190) Saturday of Cramps
Saturday
El Milagro: So I am able to get in today at 1 pm in order to get out early for Steve’s Annual X-mas Party. Kim the Nurse assesses me, does my BP and sticks me. I am listening to Folkways on the radio, and so not paying close attention to her doings. She asks if I want to take off blah blah and I agree. When I am all hooked up she moves on and I settle in to my session.
Today I am reviewing LeShawn’s contribution to our writing assignment (more on this later) while listening to Folkways and Kevin Connor’s selection of music: laid back, mellow, and not-so-on-the-tip-of-your-brain artists, including Phil Ochs, Maggie Walters*, David Olney**, Mark O’connor****, and Cornell Hurd Band*****.
So, I’m listening listening listening, and glancing up at the TV too, keeping some track of the Tennessee / LSU game (poosh poosh poosh)… waiting for the Big XII big game tonight.
At about 4:15 both my calves start cramping and I am wiggling around trying to make these cramps go away or at least deminish a bit. I try moving my legs, bending them at the knee and then stretching them out… until I can no longer even move them. I call Rosie the Tech over and she decides to lower my goal a little. We set up my chair so I can put my feet on the floor and push, which also helps cramps sometimes. My calves de-cramp (about 4:15) and I settle back again and think about the difference between pain and no-pain.
When pain is there it is almost impossible to ignore it, although I 'understand' (as Bush would say) the idea of separating consciousness from pain thru meditation or focused awareness. And, I can in some ways just refuse to be bothered by the cramps… and when they really come on despite my refusal of acceptance, at some point the cramps’ calling my attention overwhelms my ability to ignore, overwhelms my West Texas gritting of man-teeth, and overwhelms my Eastern-leaning focused awareness on nada. Then I wiggle and wane and waffle and wimper… and call for the nurses three.
At 4:30 it starts again… this time in my right thigh first. I stretch out my right leg so I look like I am reaching for a pirouette. My foot is trying to escape my leg out under the sink to the right of my chair. I wince and Carol the Tech, Rosie the Tech, and Monica the Nurse all come over and discuss, in abstract dis-compassion my current situation. I hear them as if they are a small TV screen off to my left. Carol says, “when I saw that Kim had him taking off 5 I knew it was too much. I never have him take off more than 3.” Rosie responds, “I think his puffy self is gaining weight… he shouldn’t be cramping unless he gained some weight… blah blah…” and Monica chimes in with reflections on her notions about Jack’s cramps. All the while I am stretching and cringing and trying to ignore the beginnings of cramps in my left thigh, which is wanting in on the excitement. So, Rosie does some quick math on the clip board of my “plan” and shows me her figures, reporting, “You came in at Gauguin and we set the freebird as the what-cha dingle and see? There is the culprit right there in the subtraction of the parameters of Frankenheim! So, what we clearly have to do is cut off your legs and offer them up to Alah!”
Actually her report is more full of numbers but no matter… I can’t listen rationally anyway. She concludes that my weight has probably gone up about 7 pounds due to holiday feasting, which makes me cramp when they take off any more than 3.4 kgs. Here I am cramping with more than an hour left in my session, which clearly indicates Kim set too high a goal. We need to up my dry weight and plan to take off less in dialysis. She smiles at the end of her report, saying, “So there ya go, Puffy!” and I smile weakly. They turn me off (on the machine) and I rest and feel slightly faint. The faintness is the conclusion of cramps… when your blood pressure drops. It drops only to about 108 over 70 something, so that’s not too bad.
By 5 o’clock all is back to normal and I drift along through the rest of my session uneventfully. So it goes.
I can hardly wait to get outa here, rush home to get the girls, and head up north to Steve’s party.
Notes: In at 75.8 and out at 72.3
* Maggie Walters’ new CD online at: www.americanarecords.com/ images/MAGGIE_WALTERS_ONE_SHEET.pdf
** David Olney online at: http://www.davidolney.com/
*** Mark O’connor online at: http://www.markoconnor.com/
****Cornell Hurd Band online at: http://www.cornellhurdband.com/
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
11/30/07
189) Back in the Saddle Again
Thursday
El Milagro: Rosie cannulated me tonight, putting me in the corner that she thinks is my quiet seat for writing. I've got this old Gene Autry song rolling in my head as I return to blogging after my break... "I'm back in the saddle again, out where a friend is a freind..."
Dr. Rowder and crew are making rounds and I hear laughter and his explanations and "takes" on things as he moves around the cattle...., er.. I mean patients. Jennifer the Dietician is back from her honeymoon and seems quite animated... and, Monica the Nurse is taking up the rear quietly and professionally. There's no social work component tonight. When they get to me, Rowder reports that my phosphorous "is great" again and we all nod agreeably that it really must've been Luis's fault for feeding me all the wrong things last time I was in Laredo. Cheese is the culprit for me it seems. Jennifer the D. has been researching the varieties of brie, which is supposedly alright to eat.
I am working on a writing assignment here lately so that keeps me too busy to pay much attention to the goings on in the center.
ABC News comes on and I watch... of interest: 5000 kids in Austin are homeless. So then Isleep a little, and then watch Survivor. My guy gets voted off tonight so that is not so good. He was snookered by people he thought he could trust. Does that sound familiar in the ongoing relationship between the races?
I finish up about last again... right about 1/2 way through Gray's Anatomy, which is still seeming too soapy and lame to watch closely. Maybe I am getting ready to snuggle in at dialysis with a new book.
Notes: In at 75.6 and out at 72.7
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
11/23/07
188) Thanksgiving?
Wednesday
El Milagro: Okay, so it's been awhile since I posted. I did make some notes thru this down time but as I look through them, it's "same ole, same ole..." This week we here at El Milagro are on the turkey-day-schedule, with MWF's coming in on STF and TTS's coming in on MWS. I was in Dallas on Monday, so I am a TWT this week.... wierd coming in on Tuesday and Wednesday but here I am. I weigh in at 75.2... I gained 1 pound since last night!
Today I'm ready to post because I'm thinking about how some old friends of mine aren't going to have a Happy Thanksgiving. Their 17 year old daughter was rushing out from home to take an AP test at her high school at 8 in the morning. It was drizzly that day and she was in a hurry. Within a couple miles from home she slid around a curve into the path of a pickup truck and they collided... and Helena was killed in the wreck. Her brother was my son's best friend all through Montessori school and our families had many fine times together at soccer games, Montessori events, and various kid birthday parties. Katie knew the younge
We have these descriptive metaphors in our society about death… crossing the great water; crossing Jordan, crossing to Valhalla, etc. And there are the metaphors of loss… cast adrift in a lonely sea of darkness… I seem to recall this painting by Paul Klee that has this forlorn person standing in a boat in a night-time sea. When I try to find that painting it eludes me: it is only a memory of a feeling. I suspect that my longings for Klee’s painting are an innocuously allegorical illustration of loss that I find “acceptable”. I want those feeling represented by something of value and paintings immediately come to mind. I also want to offer out to ether a metaphor that Jerry & Sue can grab onto, knowing full well that there is no real way to step into their moccasins right now.
A death in the family immediately changes all your plans. It sweeps clean your brain and your schedule and takes over on all your cognitive and emotional levels. All your little plans and the things you thought were important just hours before are swept off the burners, trashed, and no longer seem of any relevance at all. The shock puts you directly in the present with your thoughts and feelings. I imagine all the things that may have seemed important to Sue until she found her daughter dead... and how that fact and the attendant shock swoops in and overwhelms everything else in a way nothing else can. Just imagining stepping into her shoes makes me shudder. I can't even really associate into what I hallucinate is her state without shuddering. But, when I see my own big kids I want to hug them close. So, my commiseration about Sue, Jerry, Nicky, and Adrian and their pain and despair in their loss acts as a backdrop for the usual festive celebrations of our own family Thanksgiving.
I want to cherish every droplet minute of the holiday and want to notice and archive each fleeting nuance... Uncle John takes pictures but they don't capture my perspective so even as I review the pics, I am not satisfied. It is a somewhat uncomfortable thing to be in my current space. As the surface moves along affably I am grouchy underneath. I don't want to take it out on my family and yet I find myself being less than sensitive to my own people.
For example, when my dad and aunt came up for our traditional after-turkey-day brunch I was more interested in my work on the back 40 than on visiting with the company. I actually loved the seating of the whole family (minus Katie who was working) at the table of luscious lox, bagels, herring and cream sauce, kosher salami and all the fixin's, seeing everyone visiting and catching up with each other... Johnny sharing about working at UNT; Lizzie showing Shayna pictures; and even Carol telling stories about the current horrors of working for the State Comptroller. As they were all enjoying the food and fun I couldn't help thinking about how it probably compares with my hallucinations about Sue & Jerry’s current state.
And so, amidst this disconcerting medley of thoughts and feelings, I pass another Thanksgiving and into the fall and winter.
So it goes.
11/7/07
187) Election Day
Tuesday
Morning: Voted for 11 of the 16 constitutional amendments for adding to Texas' already huge constitution... I've heard it is the biggest of all states. Of note: we voted "No" on amendment # 10, abolishing the authority for the office of inspector of hides and animals; agreeing with the Chronicle's recommendation, "Is this Texas or whut? Remember the Alamo!"
El Milagro: So… another day, another cleansing. I arrive late after stopping by the house to check on the guys building the fence for our ‘back 40’. It is almost done and looks great… another of those plans that has been in the planning phase for about 8 years now. Rosie the Tech pokes me and I settle in to read the Kellogg’s Foundation guide to developing Logic Models (for work). I read, watch the news, watch NOVA’s show on the history of Sputnik, and doze for awhile before leaving for home. So it goes.
Notes: In at 75.8 and out at 72.4
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
11/4/07
186) Fall Back For More Daylight
Saturday
Morning @ Home: There is no soccer today! They played last night and Shayna SCORED!!! And, Kick Kats won, 8 to 0! Shayna's score came on her third try; two of which were from corner kicks by Kiki, where Kiki sent the corner kick into the area in front of the goal. On the score, Shayna wrestled with about three defenders and slid the kick through them and past the goalie. She immediately threw up her arms and ran outa the goal cheering. All of us on the sidelines who'd watched her miss those last three tries, yelled too. Shayna said on our walk to the field that she likes playing night games... so I guess we need more of them. So today is a lazy house day so far: reading the paper, making pancakes, and finally calling Phyllis the Nurse to find out what time I can come in today. Anytime is fine for me today, since UT is playing on ABC @ 2:30. Phyllis gives me a 1:30 time.
El Milagro: I’m a little late and walk in quickly to find my favorite corner chair waiting for me. I sit for awhile watching the staff hurriedly rush around doing their jobs until Rosie the Tech comes over to hook me up… and I have forgotten my weight, so I have to go back out to the weighting room to see what I wrote down on the weight chart. “73.8… 73.8… 73.8… 73.8” I say to my ADD self over and over as I walk back to the corner and then Rosie is off adjusting someone else. Soon she returns and I have remembered and I say assuredly “73.8”. She quickly cannulates me and takes off to do something else, while Phyllis the Nurse comes over to measure my vitals and hear my chest. No comments today about puffy face or ankles. Today the guys in the place are waiting for the UT / OSU game, which will be starting in about 40 minutes. I look around and about 7 or 8 TV’s are tuned into ABC, which is showing the ESPN games today. In the paper this morning it seems like most people think OSU will beat UT. Even the ESPN commentator picks the Cowboys.
My machine’s beeper goes off and Phyllis comes over and guesses that Rosie was so quick that she didn’t check the venous needle good enough and it needs to be turned to get it off the side of the vein, which will make the machine happier. It goes off again and Monica the Nurse comes by to push the ‘stop beeping button’. She too says Rosie should come back and re-adjust… and moves off to do something else. Herman the Nurse is the only one of their ilk who’ll actually mess with the poking of people, it seems. Rosie comes by pretty soon and just glances over and the machine hasn’t beeped again and I don’t call her over to give me a little PAIN as she adjusts the needles… and so it goes.
As I watch all the pre-game TV hoopla I think about the fall season and the upcoming time change tonight. I think it is funny that the time change is one of those things that the society still does, even though scientists now know that it is not healthy for people. We started this daylight savings time (DST) thing with an idea of economical savings written in an essay by Ben Franklin in 1784.* The first DST law was enacted in the US in 1918 and made into a uniform application in 1966. These laws have been revised in ’72, ’86, and ’05, even though there has been mounting evidence since the early ‘70’s that DST is actually unhealthy for human beings. According to Rick Weiss** “Artificial illumination is fooling the body's biological clock into releasing key wakefulness hormones at the wrong times, contributing to seasonal fatigue and depression. And daylight saving time, extended by Congress this year for an extra four weeks, risks dragging even more Americans into a winter funk.” This is not good. Scientists in a number of fields of study (not dissimilar to the scientists who announced the difficulities of global warming years ago) have produced empirical studies that show that from the psychiatric perspective extending daylight is a bad decision because it inevitably leads to more depression, mood disorders, seasonal affective disorders (SAD), and perhaps even an increase in seizures (related to fluorescent flicker). "WOW", I think to myself as I contemplate all this.
Dave Crawford from the International Dark-Sky Association*** ponders, "If we sprayed water all over the place here in the desert, we'd be put in jail. So why is it okay to spray light all over the place at night?… More than half of all mammals spend most of their waking hours at night or twilight, including teenagers. Light is fine -- in the day… We're trying to bring to everyone's attention that there is a night." I personally have always loved the dark sky. My memories take me back to standing on a mesa overlooking the Pecos River outside of Rowe, NM in the middle of the night. The air is brisk to the point of chill on
Okay… so now it is time for the UT game. I get all ready and line up my dum dum lollipops that Shayna gave me from her Halloween take. “Oh Boy”. Texas kicks off to OSU and they march right down the field and score. Then UT gets the ball and on the first play Colt falls back to flip a short pass out to Nate Jones and it goes over his head into the arms of a happy Cowboy who runs it in for a score… 14 zip against us. “$s%>!!” What a bad start. It gets worse. By half time we are down 28 – 14. What a lousy showing. Kurt Bohls and the announcer guy from ESPN who said Texas would loose are right! We can’t beat these guys. What a miserable day. I snooze through halftime, trying to lower my raising BP. The third quarter comes and I watch them score again and we are down 21 points again. I’m having a sad time here today… but I keep watching. Then in the fourth quarter that boy McCoy decides to run it himself… for 17 yards. That’s a lift. Then Texas moves down the field from the 5 and Charles dashes 75 yards for a TD. And then Colt passes to Shipley for a 60 yard run and with two minutes left we’re tied at 35! We’re back in it and now I just know we’ll win, having caught up 21 points for the second time in this game. With a minute left our soccer boy, Ryan Bailey kicks a field goal and WE WIN, 38 to 35. Do I feel sorry for those OSU fans who were so delirious in the third quarter? Nope. I feel just great and it is a good day today. I leave dialysis feeling just fine… and go home and take a long nap.
Notes: In at 73.8 Kgs. and out at 72.1 Kgs.
* Douma, M. (nd) Daylight savings time. Webexhibit. Retrieved online November 2007 from the Webexhibits website, (a public service of the Institute for Dynamic Educational Advancement [IDEA]), at http://webexhibits.org/daylightsaving/
** Weis, R. (2007, October 30) Seeing the light of day. Washington Post. Retrieved November 2007 from http://www.washingtonpost.com/wp-dyn/content/article/2007/10/26/AR2007102602479.html?nav=emailpage
*** International Dark-sky Association available on the web at http://www.darksky.org/
11/3/07
185) The Immorality of War
Thursday
El Milagro: I have to wait for about 10 minutes today, after walking in and walking completely around the perimeter of the place and finding no empty chairs. Hum. Must be they’re not ready for me yet. I go back out to the weighting room and sit in a chair along with the other eight people. Soon Gabe the Tech calls me in and I’m in the far corner. I sit and Gladys the Tech is already there fiddling with machine. She asks my weight, figures the figures and pokes me with her long slender fingers that always remind me of some teacher or nurse out of the depths of my memories of childhood… there is something about those fingers… I ask her to send Phyllis over before she leaves for the day.
So, pretty soon Phyllis the Nurse comes over and listens to me and checks my FACE for puffiness. I have a Fine Face today. I ask her to explain the whole deal about another round of Hep B shots. She reports to me in her usual evolution of history format: Most people on dialysis do not keep their immunity to Hep B because of the nature of their depressed immune systems. So, mostly they have to have two rounds of the shots over about two years in order to be safe… although, “there are no Hep B patients in any Austin facilities except one of Moncrief’s. They put them all together now. In the old days… blah blah blah…” and dialysis patients get a 40 ml slug which is way more than non-dialysis people get. The score of 5 is lower than the level that is “immune” from Hep B... the immune level score is 10 or greater… and Phyllis thinks it is pretty normal for someone like me to have to have two rounds, since most dialysis people do. Has nothing to do with anything but the norm… in other words I am in the Bell part of the curve. I tell her to tell Ms. Celeste to poke me a shot today. Phyllis comments on my account of trying to talk to Celeste in a way that makes me realize that the problem is not totally mine.
So today I’m listening to a report on NPR-ATC about Paul Tibbets* dying at 92. Anyone remember this guy? I do. I read about him on and off throughout my life becau
se I always thought the part he played in the evolution of war was quite interesting. He was the pilot of the Enola Gay in 1945 that dropped the first A Bomb and blew the poop outa Hiroshima. He always maintained, in response to folks who said using the bomb was “immoral”, that that argument was ridiculous… “All war is immoral so you can’t select out one act as more immoral.” He claimed too that he was no different than anyone else in that war… following orders. He’s no more guilty of immorality than any one person on any side who follows orders. Only on the grandest level do any of these folks fight for their national values. On the personal level most soldiers wrestle with their personal values versus following orders, I suspect.I remember counseling with an Air Force pilot once in therapy. He felt terribly guilty about doing his job bombing villages and “military targets” in North Viet Nam and knowing that he was inevitably killing civilians and people who were not part of the “enemy”. He couldn’t access those memories of flying without bringing up nauseous and emotionally distressing feelings. We taught him how to think of these things without ‘associating’ into the memories so he could access them without the associated feelings (called dissociation). When he associated into the memories, he remembered them as if he was actually there, seeing and feeling what he saw and felt then. By learning to dissociate the memories, he was able to see them from a perspective outside the memory, which allowed him the ability (distance) to view them from a neutral point of view. The advantage of using dissociative thinking is to review memories and label them from your present knowledge rather than having to have the old feelings attached whenever you bring up the memory. The client thought this was a wonderful change in that now he can think of those times and put his current perspective on them, which is more like remembering that he was following orders and that in the long run he was not responsible for his actions personally. For him, this was a good reframe that was only possible once he could access the memories in a more neutral way.**
At 7 I watch Survivor and they put the two tribes together tonight which gives my guy more of a chance to survive. Gray’s Anatomy is the usual fluff and Gladys unhooks me in time for me to rush home to see Without A Trace. Another Thursday TV nite completed.
Notes: In at 74.7 and out at 72.4 kgs.
* Siegal, R., & Block, M. Pilot of Enola Gay had no regrets for Hiroshima. Retrieved online November 2007 from the NPR website: http://www.npr.org/templates/story/story.php?storyId=15858203
** Lee Lady. Mental imagery: Association and dissociation. Retrieved online November 2007 from http://www2.hawaii.edu/~lady/archive/submod-3.html
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
10/31/07
184) Weight Ruminations & Glimpses of Mortality
Tuesday
El Milagro: Halloween is in full swing here tonight. Staff are dressed up and there are ghostly decorations hanging from the ceilings. I weigh in at 76.9 and ruminate about that all the way over to my chair. Rosie the Cat Tech comes over to poke me. She is dressed in black scrubs with a long black tail pinned to the back of her shirt. She has whiskers drawn on and cat ears stuck in her hair. Phyllis the Nurse is dressed as a nurse and working the updates on the computer. She asks for my weight and I say, “76.9! That’s a little high.”
On NPR’s All Things Considered I hear a story comparing Texas’ juvenile justice system to one in Missouri*. We have about a 50% recidivism rate (long known to all who work in TYC and Juvenile Courts… and based on our “whip ‘em into shape” mentality in that system) whereas Missouri has a philosophy of re-training and preparation for adult life in the reported facility. And, their recidivism rate? Well, that would be about 7.3%. Boy. Those Missourian kids must be much more savable than ours! Today they discussed Missouri: tomorrow an interview about the Texas system. I can hardly wait.
Sometime in the middle of this session, Celeste the Nurse comes up and reports that I need to have another series of Hep B shots. I reply that I already had a series and she replies that my recent bloodwork showed that I am susceptible again and need the shots again. I respectfully refuse, saying that I want more information about what’s going on before I decide to get another series. She tries to explain; but her explanation sounds like she is giving it to a non-English speaking idiot: “You must have this shot because the number was 5 on the last lab work.”
“Why was it so low? I just had this series a few months ago. Doesn’t make sense to me”
“The number was 5 and it means you are susceptible and you must have the shot. Will you take the shot?”
“I want to know more about this whole thing before I decide”
“The number is 5 and that indicates you need the shot” This went on for a few minutes and she did bring me a piece of paper that showed a 5 on it. But, that 5 was for a test done in March. I will hold off and talk to either Phyllis or Doc Rowder about the whole thing.
So I read a bit, watch the news, snooze-a-rama, and wake up to watch Frontline… a very fascinating report on an undertaker’s perspective (The Undertaking**) that we are… “among the first couple of generations for whom the presence of the dead at their own funerals has become optional. And I see that as probably not good news for the culture at large." This is what Thomas Lynch; writer, poet, and funeral director in a small town in central Michigan, thinks and states in this thought-provoking report. He goes on to say that "Funerals are the way we close the gap between the death that happens and the death that matters. A good funeral gets the dead where they need to go and the living where they need to be." The show
focused on people and their funerals in the frame of a bleak and brown Michigan winter. It reminds me of my childhood and being in Michigan in the winter... must've been when I was about 7 or so. I wonder how close Lynch is to Lawrence, my mom’s home-town in central Michigan. I remember now that behind my Grandmother's house was a cemetery and I used to study the gravestones there.And as I watch, I can’t help but also think of my dad and if he would have any interest in this guy’s take on death and the preparations for saying “goodbye”. My dad always likes Bill Moyers reports and they have a similar quality of curious thoughtfulness as this report. And, I also think about mine and Liz’s lack of funeral plans. Morbid? Maybe. But it is the day before Halloween. And, as a person entering their 60’s I think it is an important topic to at least bring to the fore and begin to consider. And so I watch this show closely, even through some beginnings of cramping. I work my calves and feet with my hands as I watch different people discuss death and dying and funerals. The cramping never gets screamable and it passes after about 30 minutes. Finally I am still absorbed as Rosie is back to de-cannulate me and patch me up. I sit quietly holding my poke-hole wounds, wondering about discussing this show with Lizzie.
Notes: In at 76.9 and out at 72.8 kgs.
* Beaubien, J. Missouri sees teen offenders as kids, not inmates. Retrieved October 2007 from All Things Considered’s website: http://www.npr.org/templates/story/story.php?storyId=15784264
** Lynch, T. The Undertaking. Retrieved October 2007 from Frontline’s website: http://www.pbs.org/wgbh/pages/frontline/undertaking/etc/synopsis.html
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
10/28/07
183) Fall and Nebraska has Fell!
Saturday
Morning: Shayna and I go to the soccer fields to have her team pictures made and wait around until the game with the Starlettes. The Kick Kats beat them 7 or 8 to nothing and Shayna goes home with the coach’s daughter so she can make the next game with the Rainbow Sharks at 2. Shayna played forward for the second half, took a number of shots, and made two assists but no goals. DARN! I counsel her: "You played 100% today, and when you throw in from the sidelines, ALWAYS throw down the line!" The coach’s daughter made her first goal ever… and it was called back cause she was off-sides. DARN II!
El Milagro: I walk in with a plate of 36 jam-filled cinnamon butter cookies* that Shayna and I made last night. They are your regular cut out cookies that we cut in the shape of bats and pumpkins at first, but then switched to triangles and diamonds to save batter. "Jam-filled", even though in the title of the recipe, is a misnomer. They actually just have a small dollop of black rasberrry jam on top. These are my contribution to the ‘cookie day’ PAC activity for this month. I see that my fellow PAC member, Germaine has brought over 100 little Halloween cupcakes with black frosting and orange M&M’s on top. My cookies will make a nice, less sugary choice along with her cupcakes.
I place my cookies on the corner of the nurse’s station by the front door and make my way to my chair, today on the back wall in the middle of the room.
Carol the Tech pokes me today and Jo the Nurse checks my heart and ankles. Jo asks my weight: “How much did you weigh?”
“75 even”
“How much you want to take off? 3.9?”
“Oh no! I had cramps last time. Let’s take me down to 73.”
Carol finishes hooking me up and adjusts the machine while Jo documents our plan on the computer. I begin to watch football: Texas Tech and Colorado, with Tech losing to the Buffalo’s ("sorry Michael"). That is surprising to me… I didn’t know Colorado had it in them to beat Tech at home.
Then comes the big game: UT and Nebraska. The REASON I come to dialysis. By half time we are down, 7 to 3 and we have played a lousy first half and Nebraska is playing like they have nothing to loose… and, they do have nothing to loose and everything to gain, since they’ve lost their last four games and they have been playing like their famous ‘black-shirt defense’ has become a ghost of the past. Today the ghost decides to blitz on practically every play and it is working to upset McCoy and the Texas boys. The black shirts are back and are playing rough and wild and UT looks like they have a broomstick up their… they’re very stiff and stilted. At half time I’m depressed, but still able to use a Halloween metaphor in my last sentence!
Carol the Tech puts the cup cakes and my cookies on a little rolling table and glides around the place serving the patients the snacks. I'm thinking that folks like this little snack service and that it is a good thing the PAC is doing.
So, the second half needs to be better and it does get better by the fourth quarter! By the end of the third quarter UT is still down, 17 to 9. All of us at the center who are wat
ching the game are quietly waiting for UT wake up. I count 5 other TV’s channeled to the game. It is Jamaal Charles who comes to show us what he can really do besides fumble the ball. In the 4th quarter Charles runs for 216 yards and 3 TD’s and puts us ahead, 28 to 18! By the final gun we are winners; 28 to 25 and I let out a “WHEW”. My BP was up to 150 / 75 at one point during the 3rd quarter... by the end it is down to 116 / 68. What a game! As Gladys the Tech unhooks me she asks for the cookie recipe and comments that she and Phyllis the
Nurse both like my cookies very much. I didn’t tell her that in the final review we figured out we left out one ingredient (lemon juice)… and they still turned out tasty. As I weigh out at about 6:30 I recognize that we are getting into the Fall** and it is already almost dark and chilly. The seasons, they are a changing, and I’m suddenly aware that now dialysis is part of my seasonal life and I come and go from this place as the seasons come and go from the calendar. I wonder if this thought is part of my acceptance of this dialysis in my life or if it is just another thought running thru my head. “Hmmm.”
Notes: In at 75.0 and out at 73.0 kgs.
* Jam-filled cinnamon butter cookies. Retrieved online October 2007 from the Kidney Foundation of Canada's website, http://www.kidney.ab.ca/kitchen/recipes/jam_cinnamon_butter_cookies.html
** Leaves pic by Golda, retrieved online October 2007 from http://www.thelensflare.com/u_golda.php
New Readers: For A Welcome Post, click August 2006 on the Sidebar.
10/26/07
182) In the Sink-hole Again
Thursday (My brother's Birthday!)
El Milagro: I am here and ready for my favorite TV night. Have the corner chair in the back and get into a conversation about the difference between cake donuts and glazed donuts with Rosie the Tech, who reports that the dietician had problems with Pete’s Donut Handout. Gladys comes to poke me while I’m in this discussion and then the doc and the new dietician, Sarah (?) come by to report that my phosphorous is still high at 6 is high but not as high as the now famous Laredo score. He asks if I can up my take to 4 Phoslos at each meal and I agree.
I finish reviewing a article for Social Work in Schools that I was supposed to complete by 9/11 and can’t decide to recommend it or not. I wish I remembered more about ANOVA. I think about it some and go over the diagrams several times and then just give up. I’ll have to look at it later, with my stat book at hand.
I listen to NPR and then watch the news and then Survivor. James the Gravedig
After 15 minutes or so my BP is back up to the high 90’s over high 50’s and I am raring to go. Gabe finishes de-cannulating me and I sit there another 10 minutes holding my last poke hole while it clots. What a night. I’m ready to head on to the old homestead and see the girls. So it goes on a Thursday.
Notes: In at 75.1 and out at 73.2 kgs.
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10/24/07
181) The Generosity Factor
Tuesday
El Milagro: I weigh in, walk in, and wander to the corner chair in front by the window. I have been listening intently to Terry Gross interview Valarie Plame* and am not really completely focusing on being at the dialysis center yet.
Carol the Tech comes over to stick me and Phyllis the Nurse comes by to listen to my heart and converse with the chair side Charlie (the computer). Then Rosie the Tech comes by to slip me a bag of money she has collected under the suspicious eyes of Ron the Boss Nurse. She reminds me that she isn’t supposed to be collecting money from patients and just told him she was doing it for Pete the PAC Secretary because she forgot to bring the donation jar again. I take the money and count it. Rosie reports on Pete’s donut operation last Monday and now the staff wants to make kidney friendly cookies for Saturday. I offer to make some too. The donuts were gobbled up by everyone and volunteers were available to distribute them throughout the day.
Two new people are beside me… they’re about my age I suspect. He wears a ‘gimmie’ hat, blue jeans, and tennies. His wife is a little more conservatively dressed and she looks proper with close cut hair and sitting very straight. She sits beside her man and today they are talking to Sherry Social Worker for their initial interview. He has some questions about his insurance and she and Sherry talk a little about diet and cooking kidney-friendly meals. They are scoping out the whole dialysis center scene and occasionally she leans over and whispers something in his ear. They are friendly enough and Rosie the Gregarious gabs to them as she documents his vitals and he digs in his pocket and brings out some change and hands it to her. She gabs on and then brings me the money for the PAC Donations at the end. I chuckle at the whole thing.
At some point a woman who is always here sitting stoically with her father as he dialyzes comes over to me and says she really likes all the things the PAC is doing and she can’t help or come to meetings because she lives so far away… but she wants to help so she gives me a $10 bill for the kitty. I implore her to not donate so much money unless she really can afford it and she shakes her head a universal “No”. She is adamant that she wants to give this money so I reluctantly add it to the bag and thank her profusely. She says that she loves the sense of community that we have at the center and she wants to be part of the love. And her generosity doubles our collected funds!
I listen to All Things Considered, watch the ABC News, and then drift off for a nap… waking in time to catch NOVA.
Notes: In at 76.1 and out at 73.6 kgs.
*”Fair Game tells Plame saga from her viewpoint” Retrieved October 2007 online from Fresh Air’s website, http://www.npr.org/templates/story/story.php?storyId=15553270
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10/21/07
180) John's Birthday
Saturday
Morning: Shayna’s soccer team played the Blue Angels this morning and came out of it with a 2-2 tie. It was a brightly cool morning of coffee, dewy fresh cut lawns, and brisk soccer… made even better by having Johnny on the sidelines with us. A good game, in that Shayna played aggressively and made some good defensive plays. I hallucinate that she is playing extra hard for her brother. Kick Kats scored first and then the Angels scored
twice and finally, the Kick Kats’ Kiki ran straight through their goalie to score the final goal! Today is son John’s 23rd birthday--> and he came into town last night for the weekend. We took him out to eat at my new favorite restaurant, Sazon* and then got him up early this morning for the 8 a.m. game. After the game we rushed home to say “goodbye” to Ann, our house-guest from Baton Rouge when Frank picked her up. Frank invited Johnny to go on one of his sailing ventures sometime, and then Johnny and I went over to our taco palace for breakfast tacos and cinnamon rolls. We hung out, did his laundry, visited, inspected the back 40 fencing plans, and generally had a good father-son tete-a-tete for the rest of the morning. It is never long enough though and as I got ready for dialysis, John headed out to his mom’s house for the rest of the weekend. I tried to get him to check his oil on Kim's old Honda but his zen existence of living in the present couldn't be slowed by the detour of getting back out of the driver's seat of his life to check the oil. That's an old person's tao. We grin at each other and he hot rods down the street like a little blue bug running for his life.El Milagro: I walk in slightly after 1 p.m. and walk around looking at all the TV’s for the Texas / Baylor game. John the New Guy says it’s not on TV so I settle in to my chair and settle for watching OU / ISU. None of the nurses come by today to listen to my heart and feel my ankles. Jason comes over to cannulate me with his usual cautious and gentle feels and pokes and checks and questions: “Does that feel okay?” as he pulls blood into a syringe and pushes it back… pulls it out and pushes it back… “Yeah. Smooth." These checks are to ensure the needle is set well in the middle of the vein and not rubbing up against the side. I watch the game for awhile and ISU
is looking much better than last week against Texas.I surf the channels and find an interesting news item on CNN: The Dalai Lama accepting the Congressional Gold Medal (last Wednesday). Listening to his talk reminds me that he is an exemplar of graciousness and love of humanity. He concluded his speech by asking us to “take a leadership role (to) …address …global issues from the perspective of the oneness of humanity, and from a profound understanding of the deeply interconnected nature of our today’s world.” As all great spiritual beings, I feel moved just listening to his voice. So, this is an uplifting experience as I sit here having my blood cleaned. So it goes.
Notes: In at 74.4 and out at 72.4 kgs.
* Sazon online at: http://www.sazonaustin.com
** His Holiness’ Speech at the Congressional Gold Medal Award Ceremony, retrieved online October 2007 from the Dalai Lama’s website: http://www.dalailama.com/news.171.htm
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10/19/07
179) Fire Drill @ El MIlagro
Thursday
El Milagro: Checked in for “TV night”, ready to sit back, relax, and watch some tube (Survivor & Gray’s Anatomy). Dr. Rowder came by to do his weekly check. I’m fine; he’s fine; and everything is hunky dory. He reports that all my lab work looks good. Carol the Tech comes over to poke me and hook me up, and Phyllis the Nurse listens to my back and front and declares me “alive”. Then Jennifer the Dietician follows-up the doc with a paper copy of my labs, and goes over them test by test: Albumen, good; nPCR HD UKM (protein intake), good; HCT CALC (red blood cell count), good; Iron Saturation, good; Ferritin (stored iron), good; Calcium, good; Phosphorous, getting better (still recovering from Laredo); CAxPHOS Corrected (Ca x PH product), good; PHT Intact (parathyroid hormone), good; Potassium, good; KT/V UKM Delivered, good; and Glucose, good. Jennifer said that she’ll be out for a couple weeks in Louisiana getting married. We discussed Catholicism and Judaism for awhile and she moved on.
There’s a new guy across the way today (looks to be in his late 20’s, early 30’s) and the rumors are that he has been on dialysis since he was six months old! They say he’s had several failed transplants… and I think, “So, he must be really used to this routine… why has he changed to this facility?”
Since I might be involved in a conference call with the Patient Ambassador's group and Doggett’s office about the Kidney Care & Quality Education Act, I ask Phyllis to explain Epogen to me. She reports that they have me on a “maintenance” dosage of Epogen (4400 units). She said back when I was really anemic they started me with more and then scaled it back to the current dosage. She also said (again) that epogen has changed the landscape of dialysis; before epogen many of the patients who were anemic had to have transfussions in the center. Now that they use epogen, there are hardly any transfusions going on here. The dosage is figured on the formula of 100 units per kilogram of body weight.
Next we have a surprise fire drill! And it's not the Chinese variety. Suzanne the Administrator comes in from the back, ringing a school bell and yelling "Fire Drill!" No one does anything until the techs and nurses walk around explaining to people what we would do if it really was a fire. So, the routine is this:
1) Push the "Stop Pump" button on your machine;
2) Clamp off your arterial and venous lines to the machine;
3) Un hook the lines to the machine;
4) Say "Goodbye" to the blood your machine is holding, and
5) Evacuate the room (front half out the front, back half out the back).
The patients don't seem overly excited or even interested in this fire drill activity, although I think it is neat and fun. They should do fun things like this more often. I want to actually unhook myself and book out the back door, but Phyllis says, "NO Jack!" She also warns me that in a real situation, we don't stop to pump people's blood back into them. They just have to give it up in the name of efficient evacuation of the building. Oh well. A vampire would love a fire in the dialysis center... all that lushous blood sitting in those machines... yum yum.
<---[An interesting painting I found online today*]Survivor is kind of boring tonight, except for the possibly 'racist' attempted sacrifice of James the Gravedigger... making him my favorite participant for this series. Will he make it another week? Only if Jeff juggles the teams again, I think.
Gray's is the usual fare of soap operaish dribble and foible. I don't know about it this season: it's almost too much to watch anymore. So it goes.
Notes: In at 74.8 and out at 72.8 kgs.
*Grockel, A. ~ Celebration. Retrieved online from http://www.art.com/asp/sp-asp/_/PD--10220037/SP--A/IGID--1064921/Celebration.htm?sOrig=SCH&ui=9042A656AF19453DB559975ADFB82963
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178) Blood Work Tuesday
Tuesday
El Milagro: I weigh in pretty high today… one of the normalish occurances on Tuesday, after being away from here since Saturday and eating hearty over the weekend… I gain weight. Today it is 76.2 and I know I don’t want to drop 4 pounds because that can be a path through time to cramp-land by the end of the session. So, I direct Debbie the Tech to “take off 3” and she replies, “3.5?” and I nod in agreement. She documents our plans in the computer and a few minutes later Rosie the Tech comes over and sticks me. Today is lab work, so before hooking me up Rosie sets the arterial needle and venous needle and then uses the arterial needle to collect three vials of blood: one for sending to San Antonio for checking my current antibodies, a vial for the lab to check my potassium and phosphorous, and a vial for the billy goats three.
I sleep (was up late last night waiting for our houseguest from Baton Rouge, who is in Austin for a Training of Trainers for Frank’s CYC Institute*. She was held up in Houston and didn’t get dropped off here by Frank and Pam until 11:30 pm.)
I watch Frontline’s Cheney’s Law episode, in which we learn how Dick Cheney “conducted a secretive, behind-closed-doors campaign to give the president virtually unlimited wartime power. Finally, in the aftermath of 9/11, the Justice Department and the White House made a number of controversial legal decisions. Orchestrated by Cheney and his lawyer David Addington, the department interpreted executive power in an expansive and extraordinary way, granting President George W. Bush the power to detain, interrogate, torture, wiretap and spy -- without congressional approval or judicial review.”**
Rosie takes me off and we discuss cooking Mexicano.
Notes: In at 76.2and out at 73.3 kgs.
* CYC Institute website online at: http://www.cyccertification.org/about.asp
**Cheney’s Law (Oct. 16, 2007) Retrieved October 2007 online from Frontline’s website, http://www.pbs.org/wgbh/pages/frontline/cheney/view/
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10/13/07
176) College Football & Dialysis
Saturday
Morning: Shayna's soccer team won against the Tigers this morning; Shayna played well on offense and defense and they won 4 to zip. The refs seemed a lot more careful and fair this week after Coach Charlie's letter to SAYSA about the poor quality of reffing last weekend. The head of the refs came by and gave some pointers to the flagger right in front of our parents, showing his concern I hallucinate.
From Futbol to Football: I check my TV and find out UT isn't playing on any channel I have so I call El Milagro and talk to Gabe the Tech who checks and reports I can come in at 1 p.m. So, I'll catch the last half of the game. If we don't win this one against ISU, we have no business being a football team.
El Milagro: I arrive and immediately look around to find the Spanish version of the newsletter. They printed it directly from the PDF so it looks way better than the English one. I weigh in and go find my chair. Rosie the Tech cannulates me and Jo the Nurse listens to my heart. My BP is a bit low.
It is right at half time in the UT / ISU game and finally we are ahead like we should be in a game; 21 to 3. I watch the rest of the game happily and it ends up with UT smearing ISU and I feel almost delirious. This is an example of external events impacting internal sensations. There is an external event (behavior) that is evaluated positively by our thoughts (internal computation), which influences our feelings (internal states), according to NLP. This structural schema is what makes NLP a "behavioral" approach, BTW.
After the UT success I watch the Texas Tech / Texas A&M game and witness Tech bring A&M to their knees by 28 points. My brother, Michael, is dancing in glee I'm sure.
So, today is football watching day at the dialysis center. It is pretty quiet and uneventful here and I notice lots of TVs are tuned to various football games during my stay. If it weren't for the intermittent beeps of the machines we could all be cozy at home on our couches watching our games. Actually, Saturday sports can just as well be watched here as at home, and for those of us who don't have the multi-option cable service, here is even better. For those of us who actually focus on our TV watching, sitting here with earphon
es clamped to our heads in our own little zone is vastly better than watching a game with children running about yelling and relatives stopping by to visit and converse across the space between the TV and the viewer (not that that ever happens to me). The only thing lacking for a perfect world around here is the beer and potato chips... which really don't mix with dialysis.After the Tech game, I wrap up my session with a lowish BP (105 over 65), weigh out, and jump in my truck to drive west towards my house. The sun is lowering into the horizon and I have to lower my sun visor as I drive directly into the sun. Even though I am tired, I notice that the weather is beautiful today and I am still feeling jubilant. At home I pull into my driveway, exit the truck, and turn off the water I left dribbling into my cactus garden. As usual, after dialysis, I am tired and spent... I take my BP and it is now 99 / 65 and I turn on KUT and rest on my own couch until Liz gets home. What a Saturday!
Notes: In at 74.3 Kgs and out at 72.3 Kgs.
10/12/07
175) A Village Loss
Thursday
El Milagro: I hear through the grapevine today that we had a death in the center (very unusual for people to die here) this morning… staff is more docile than usual, it seems to me. The rumor is that Ms. S. came for dialysis and looked fine to everyone. She was hooked up and when staff came to give her her meds they observed her eyes rolled back in their sockets. The staff jumped into emergency mode and tried to revive her while calling 911 and the doctor-on-call. After spending some time trying resuscitation techniques on her body, laid out on the floor, staff put her back on a recliner and surrounded her with privacy screens. She had departed this world. One staff reported to me that it was “real nice” how respectful and gentle the staff were with Ms. S’s body. Three police units, the fire department resuscitation unit, Dr. Moritz, and the coroner all arrived and the staff and folks on their mac
hines got real quiet as the authorities went about their duties. I hear that our departed villager is survived by eight children… all but one grown up and out on their own… and, that she had been on dialysis about a year and a half… and had other medical problems and a hard life. DaVita will send sympathy cards to the family. The staff here are very compassionate people and when something like this happens they go about their duties under a pall of somberness. It seems that when there is some emotionally stressful going on a number of staff drift about and will quietly share their feelings with me... perhaps because they perceive me as a person who listens (bears witness) to their pain. And maybe that's just my hallucination and I am the one who ferrets out the details of these happenings to post in this blog. Or, maybe it is a bit of both.Carol the Tech is cannulating me and we review my dry weight and it is recorded now as 72.7 (160 lbs) and she hooks me up and sets the machine to take off 2.1 kgs. I tell her about my last session cramps and she replies, “that’s cause you left here at 71.6 last time”.
When I got here today I immediately found Angie the Administrative Assistant to get copies of the new newsletter to hand out to my shift. I picked up a stack and started on my delivery route… and, noticed the copies were… being polite… less than adequate. The front top corner showed a folded-over corner and the darker graphics copied as black boxes. I gave myself a few deep breathes to calm down and then returned to Angie to ask what happened. Turns out she copied from a stapled copy of the document, instead of copying directly from the PDF file. I sternly asked her to copy directly from the PDF next time and she smiled. I held myself from asking what the Hell she was thinking when she was making our copies, and does she think that the way they came out is acceptable. I walked away telling myself, “If you want something done right… do it yourself.” Passing out the newsletter, I felt like apologizing for it’s looks, but I just pleasantly said “Hi”, “How ya doin?”, “Here’s the newsletter”, and stuff like that.
Tonight is TV night in dialy-land… so I watch the ABC News, Survivor, and most of Gray’s Anatomy. Survivor is in China this time and seems more back on the interesting-to-watch than last season. I’m not sure who I favor yet and am just enjoying watching these people get to know each other. And, yes, I do know that it’s not reality… it’s a weird sort of meta-reality where people don’t really act like themselves… and yet… they still have quasi-human interactions that are metaphors of the real world. fl the way I see it.
So it goes.
Notes: In at 74.3 and out at 72.4 kgs.
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10/9/07
174) Food & Forgetfulness
Tuesday
Homeside Reflections: I took some notes last Saturday for this blog and neglected to post them because of my depressed state about UT losing to OU in Dallas. What a good exciting beginning of an ultimately terrible loss. I got off my machine at El Milagro just as OU picked up a tipped pass in the fourth quarter and it looked to be going quickly downhill. That day I felt really puny anyway and had missed Shayna's early morning soccer game. Probably felt puny from working 15 hours on Friday, flying out to Amarillo to do some work with an agency out there and then getting stalled in Dallas on the way home. It is the norm for even Southwest Airlines to slow down on Friday evenings... so I had a delay in Dallas and didn't get home until 10:15 that night. I had also ended up eating some BAD, high phosphorous stuff in the bar in Amarillo because they didn't have anything that would be healthy for me.
I find that when I am traveling and get hungry, I don't seem to care as much about my special diet... I just take whatever I can get. I do take extra binders with me usually! That airport bar in Amarillo doesn't have chips and salsa (half okay)... only chips and queso (plastic velveeta and ro-tel... really BAD). "Oh well... just a little won't hurt..." I rationalize. At home or in a restaurant with friends and relations, I'd never roll over like that. But, by myself in the airport bar in Amarillo... (sounds like it could be song...). And, of course, who can turn down the free peanuts on SW Airlines? They're such cute little bags of sweetened nuts... I even tried telling myself "You're alergic to nuts" but I didn't believe myself even for a minute. And a minute is about how long it takes to devour the contents of one of those cute little bags.
I spent my blogging time over the weekend working on issue #5 of the El Milagro News; my contribution to the Patient Advisory Committee. As there is more to report, this newsletter business is taking more and more time. Sunday's time was about 4 hours and I missed Shayna's winning her first cross country bike race. I must say, that morning when they tried to get me up to go watch before sunrise... I was rolling over in bed saying, "No! I'm too tired..." and only later wished they had dragged me out. I promised I will watch the next bike race. When I finally got up, I was feeling dragged out, still UT-down, and barely could haul myself to my work computer (publisher) to work on the newsletter.
I Can No Longer Multi-task: I do a great job of thinking about what I’m thinking about… but I’m having a helluva time keeping in mind things I’m not focused on. I used to excuse that by saying, “those things just aren’t important to me…”. This morning Lizzie set my dialysis bag out in the middle of the hall and reminded me to put it in my truck. Here I am driving through the park on the way to the center and it pops into my head that I don’t have it. “Damn!” How does that spontaneous popping happen?
El Milagro: I walk in without my bag, feeling naked. I’m beside John the New Guy today. Rosie gets around to sticking me after I’ve been here about 30 minutes… while I talk to John about getting back in the job market. He shares that he is going crazy not working… he had to quit his high power job when he started dialysis and now that he is adjusted here he wants to get back to work. I can certainly understand that: without work, this would be a real drag. He is thinking about what kind of work he can do. I offer that he could do some volunteer work (tutoring, mentoring) until he finds a job.
I know how to forget things; not how to make them important enough to remember. I used to be better at remembering an unrelated group of things… for years I wrote lists and at work I still do. I am an old time Time Design guy from way back.
I remember important stuff pretty well. I knew this guy when I lived in Waco back in ’82. He was one of those quasi-intellectual self-made men who multi-task quite well. He had grown up in a spiritual commune called the Emissaries of Divine Light. Well, as an adult he moved out on his own and what I always remember is that he kept ONE LIST and it had everything on it: things he had
to do today, next week, and next month. Intermixed there on his list were things to buy at the hardware store and the grocery store… things he wanted to remember, books to read, and ideas to ponder. All on ONE list. I thought it was peculiar. I can’t remember his name… but he reminded me of Gyro Gearloose. His list was in a tattered ledger-type book with a rubber band holding his place… and, I recall that he got tons of stuff accomplished.Back here at El Milagro, I am thinking that I forgot something else… oh yeah. My weight. I recall it slowly when Rosie the Tech asks for it and then wander off in my brain to consider my rationale for remembering or forgetting things. When I forget something I could fret about it, or I can do what I do: happily tell myself, “out of mind…, no more worry.”, trusting that the object of my inquiry will pop back in when I need to remember it. Some people would call that lazy brain and I prefer to call it the Zen approach.
I tell Rosie that I have completed the newsletter and sent it in to be copied. She gets Mario on the phone so we can talk about his completing the Spanish version. She also brings me a blanket and earphones to use for the session and I settle in to viewing the tube. About 5 minutes before I’m done I get attacked by excruciating cramps in both my calves at the same time. Yowzah… that hurts. I struggle to bend my feet up and Rosie comes over and pushes against my feet. She stops the machine and adds some liquid while I try to push my feet against the floor to stop the cramping. Within those 5 minutes it’s over, my BP has dropped to about 90 over 50 and I feel dizzy, drained, and ready to call it a night. Darn! I hate it when that happens. Rosie thinks I’ve probably gained a little weight, making our figuring of how much to take off wrong. “Well okay…. Lets just get it right next time”, I think.
So it goes.
Notes: In at 76.1 and out at 72.8 kgs.
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10/3/07
173) Feelings
Tuesday
El Milagro: Here I am again… and the regimen is the same: Carol the Tech cannulates me and her back is better… Kim the Nurse listens to my back and chest and fistula and asks if I have ever heard of a magazine whose name escapes me 20 seconds after I answer that it sounds like some sort of religious tome. I am particularly conscious of how I am feeling tonight, since having such a miserable session last time. I weighed in at 76.4 and Nurse Kim wanted to ‘take off’ four at first, but I cringed at that! I reported to her about my cramps and we decided to 'take off' three instead. She commented that maybe I am just gaining some weight, which also made me flinch. Let’s see, 76.4 kgs is about 10 pounds over what I envision myself usually weighing. Would I rather change my vision of myself, or avoid cramps? Hmmmm. I guess I choose no cramps and I’ll just ignore the weight thing and eat less food too.
John the newish guy is sitting next to me and seems in a good mood: he is joking with the staff and smiling. That’s good. He responds to my salutation that he is adjusting and doing much better and I think that that is a good attitude to have, since none of us can really change our situations and we might as well find a way to enjoy them. I wonder many times if my often-noted acceptance quote is really about accepting what we cannot change, or is it an existential excuse for relinquishing the control we perceive we might have over any situation. It is somewhat comforting to state that acceptance is a possible strategy in integrating our dis-EASE. But I sometimes think that I should consider the more aggressive approaches. Some talk about "fighting" the dis-ease and to me that sounds like a more nihilistic or dialectical approach. When we fight something we are focusing on differences in order to define that which we are against. I prefer, most of the time, the approach of inclusion: drawing the other into ourselves and incorporating it into our strategy. Somehow, including the strengths and negatives of the other into our own reality and using what we can from this knowledge, makes more sense to me. I am now wandering around in my own brain universe and feel like floating lost in space. Enough already!
I listen to NPR's All Things Considered, watch the ABC News, and then channel surf around to see what’s available for vacant brain viewing… a cops-type channel captures me for awhile, with it’s “extreme car chases” and the inevitable car crashes. Finally this bores me too and I remember that Ken Burns’ War is on PBS and switch over there to finish my session. This is the last episode and of course it finishes with the grossly irreconcilable images of emaciated, sunken eyed Jews being carried out of the death camps against those of gleeful GI’s hugging and kissing the girls on the docks of their return. Powerful show shown at an appropriate time.
Burns finishes as I finish and I have this powerful urge to rush home to Lizzie and Shayna and immerse myself in that comfortable reality. I drive carefully on the way home and as I walk in, my house is just as warm and homey as usual… and I sigh in relief. So it goes.
Notes: In at 76.4 and out at 73.5 kgs.
New Picture: See Post #166 for a picture of me and EJ with Rep. Kevin Brady from Conroe.
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