320) The truth According to Jack

January 24, 2009

Saturday

Morning: I have been working on the redesign of this blog and going crazy finding the HTML code for one little item I want to change! I want to change the turquoise (00FFFF) to a more normal looking blue like you usually see for links in emails; a bright blue (like 0033FF). Somehow I just can't locate the right HTML label to change in the template. It has been driving me crazy using my hunt and peck method of searching out a label, editing it, saving it, pulling up the blog to see how it is different, and then going back to the code... over and over and over and over... until it looks the way I want it to look.

And this all started when my friend Gracie emailed me about the color of these posts... the puccoon, or deep red. On her computer the text color is completely different! Made me wonder if my changing my color was a thing I needed to do in the HTML, so when I got home last night I started messing around the the template and HTML code and then checking it on various computers. Sometime during my template investigation Rosie the Tech called and we arranged for me to come in today at 1 pm.

El Milagro: Rosie the Tech has my chair ready and she sticks me as she is telling me about John from Nashville, who arrived for visitor dialysis yesterday and said he knew all about her from reading my blog.

"OUCH" I say, almost pulling my arm away. On the venous poke she has hit a nerve right on its head... or, wherever it hates to be hit. She tries to adjust the needle and that doesn't help at all. I convince her to just stop moving it around and go on with taping it. I envision this little nerve guy in there with this spike going thru his heart and him screaming out in pain... sending a message up my arm and to my brain's pain center informing us all that we should scream out too. Another part of my brain that likes to switch subjects in such a situation, is beginning to sing, "Only time will heal this broken nerve..." and another partner brain part chimes in, "Let's board the pain reduction meditation express , pulling out of the painful station NOW" and I tell all my brain parts and Rosie, "Just go on.... you hit a nerve and there's no fixing it..." while I concentrate on my pain reduction meditation.

So, Rosie continues more gently in hooking me up and shares her thoughts on the new patient, John from Nashville. He told her he got to my blog by googling "El Milagro" and I nod, understanding how that could happen. I reply to her that I have had several emails from him and even sent him my thoughts (see Notes*) on how to make a dialysis center visit as comfy as possible, given that visitors are really putting themselves in the hands of folks they don't know and probably can't trust like the people at their own center. Rosie goes on to say that even though John had good review of my blog, she still is not interested in reading it because she doesn't want to learn any info that would change her view of me as a patient and I nod in agreement. Her reasoning is logical and I certainly wouldn't want her to read the thing and have it negatively reframe her relationship with me.... either professional or personal.

And, simultaneously my brain is thinking too that she is wise enough and thoughtful enough to take what she might read with a grain of salt (<-- now where did that saying come from?). I think of her as cognitively complex: having the ability to consider many data bits without seeing things as black or white. So, then she continues that there are still staff around here who are bothered by my blog. They read it and DON'T LIKE IT... and they argue against some of the things I write as if I was documenting the Truth, or some objective reality which I don't even ascribe to, really. BTW, these musings of mine are subjective observations not empirically validated in any way. And, there is sometimes even some poetic license in what I say in order to increase the humor of dialysis or to make a point. I write my own words and they are my own personal musings from my own skewed perspective... being something of a combination of stream of consciousness, personal observations, and mental constructs of my own thoughts. In that respect, and from the perspective of post-modernism, they are reflections of my truth, not the Truth.

So I listen to Rosie's feedback and her own reflections about how curious it was for her to hear a stranger report that "he knows her" from reading about her on the WWW. Does what he knows fit or is she a completely different Rosie than Rosie knows? I assure her that I think she would approve of my rendition of Rosie. She admits to "almost" wanting to tune in to the blog... but adds that she still won't. I stupidly try to influence her (which I shouldn't, BTW) by sharing my blogging about our FAT discussion: "You should see what I wrote about the other night..." She laughs and I'm thinking, "Stop it. It's her choice..."

When I drove over here today I was thinking of blogging about how tired I am of doing this all the time and how ready I am to move on to the cut me open and dump in a new kidney part and how I am going to plan a strategy for becoming more of an activist in this whole thing... including:
1) Writing a letter to the North Austin Medical Center Kidney Transplant Program about making quicker headway on establishing their paired exchange program;
2) Writing a stronger persuasive appeal to my readers of this blog and the WWW to come forward now and discuss offering me a kidney; and
3) Creating a "Give Jack a Kidney" campaign and find way to advertise in on the web.

I am not following up on these thoughts today however, since I already have written a lot in this post. So, maybe some other time. I tire of these writings now, set up my earphones to hear Folkways, open my MI book and begin to read on...... So it goes on Saturday afternoon.

Notes: In at 77.0 and out at 75.0 kgs.
*Email to John from Nashville on visiting new dialysis centers: "When I am on the road and need to visit a dialysis center, I try to be very friendly and observant and ask about anything that seems different than what I am used to."

I thought I said much more than the above to John. So, if I were writing up again my recommendations for visiting another center I would add: 1) work thru the social worker at your center rather than thru the national service (such as DaVita has); 2) find out the name of the social worker or charge nurse at the center you are going to visit and try to make a personal contact with them if at all possible (email or phone); 3) Ensure that you have paper copies of any paperwork your center has to send the other center: on more than half of my visits, I get there and they don't have or can't find the paperwork; 4) Walk in the door of the new center embodying the persona of "good patient"; friendly, knowledgeable, compliant, etc. ...whatever you would like to see in a tech or nurse is probably what they would like to see in you. 5) Be respectful if you have to direct them or ask for something they don't usually do; 6) Thank the staff at the end of the visit and make some sort of personal comment about their helpfulness etc.