Thursday, November 27, 2008

Sinkin' Soon

Sinkin' Soon - by Norah Jones

We're the oyster cracker on the stew, the honey in the tea
We're the sugar cubes, one lump or two, in the black coffee
The golden crust on the apple pie, shining in the sun at noon
We're the wheel of cheese high in the sky
But we're gonna be sinkin' soon

In a boat that's built of sticks and hay, we drifted from the shore
With a captain who's too proud to say that he dropped the oar
A tiny hole has sprung a leak in this cheap pontoon
Now the hull has started growing weak
And we're gonna be sinkin' soon

We're gonna be sinkin' soon, we're gonna be sinkin' soon
Everybody hold your breath and down and down we go

We're the oyster cracker on the stew, the honey in the tea
We're the sugar cubes, one lump or two, no thank you, none for me
We're the golden crust on the apple pie, shining in the sun at noon
We're the wheel of cheese high in the sky
But we're gonna be sinkin' soon

Ten Cents A Dance

"Ten Cents A Dance" - Rodgers & Hart


I work at the Palace Ballroom, but gee that palace is cheap
When I get back to my chilly hallroom, I'm much too tied to sleep
I'm one of those lady teachers, a beautiful hostess you know
One that the Palace features at exactly a dime a throw

Ten cents a dance, that's what they pay me, gosh how they weigh me down
Ten cents a dance, pansies and rough guys, tough guys who tear my gown
Seven to midnight I hear drums; loudly the saxophone blows
Trumpets are tearing my ear drums; customers crush my toes

Sometimes I think I've found my hero, but it's a queer romance
All that you need is a ticket, come on big boy, ten cents a dance

Fighters and sailors and bow-legged tailors
Can pay for their tickets and rent me
Butchers and barbers and rats from the harbors
Are sweethearts my good luck has sent me
Though I've a chorus of elderly beaux
Stockings are porous with holes at the toes
I'm here till closing time, dance and be merry
It's only a dime

Sometimes I think I've found my hero, but it's a queer romance
All that you need is a ticket, come on big boy, ten cents a dance

A Minor Bird

"A Minor Bird" - by Robert Frost

I have wished a bird would fly away
And not sing round my house all day
I have clapped my hands at him, from the door
When it seemed as if I could bear no more

The fault must partly have been in me
The bird was not to blame, for his key
And besides there must be something wrong
In wanting to silence any song.

Monday, October 27, 2008

Periya Mama has a new blog!

Hey everybody!

After much, much begging and nagging from yours truly, Periya Mama has started a blog of his very own :-)

I have asked him for a bare minimum of one story per decade of his life, but obviously I'm hoping that he's going to get bittten by the writing bug and write WAY more than that (an online memoir of sorts). So go pay him a visit at his blog, and leave encouraging comments, y'all!

For those of you having trouble clicking the link in the title, here is the actual link:
Mama's Memories and Thoughts

Thursday, September 04, 2008


So, I've been drifting towards perhaps changing the focus of my blog from just peritoneal dialysis to everything under the sun. As a first offering (well, technically second, since the "Last Lecture is the first - you really should take the time to watch this video in its entirety, because the man is such a wonderful teacher!), here's:

STAGING DREAMS OF CHANGE - Strands of history that remain incomplete
Githa Hariharan

The writing of history need not be a solitary exercise conducted among dusty books in a library. Nor need it be an exclusive business monopolized by scholars. History — or some of its strands — can be portrayed onstage and debated in full public view. These were among the cheering thoughts that came to mind when I recently witnessed the performance of a “feminist docudrama” that maps afresh a little chunk of history.

The docudrama, called Kalakkanavu or “A Dream of Time”, is unusual not only for its content and form, but also for its overall objective. As far as content is concerned, it retells almost a hundred years of history from a feminist perspective. The form is equally ambitious: the drama pieces together select extracts from Tamil women’s writings, speeches, songs and stage performances from the mid 19th to the mid 20th century. The central objective is a debate on women and change; but this is not just a scripted debate to be presented onstage. It’s open to the questions and comments of the “actors” and the “audience”. To this extent, the script, written by V. Geetha, is in a state of becoming, open to further dialogue. In fact, the idea of dialogue seems central to the enterprise — a dialogue with the past to explore some historical moments that precipitated the beginnings of social change; and a dialogue between those historical moments and present-day debates to enrich our understanding of what we are living through.

The dialogue hangs on the framework of five historical moments that made change less of a dream. During each of these landmark moments, women were enabled, in some way or the other, to imagine their lives travelling beyond the domestic sphere of marriage, motherhood or household work. Each of these individual journeys also left a legacy for other women — by giving them models through which they could rethink the nature of personal and social relationships. The models are not always “successful” — some of these women paid a terrible price for venturing off the safe and familiar path. But the models said it could be done. Change was possible; at any rate, re-thinking the familiar sanctioned world could pave the way to change.

The first of these historical moments is a period of nationalism when the “new Indian woman” was a recurring motif in what nationalists and reformers had to say. In Tamil Nadu too, the great nationalist poet, Subramania Bharati, is credited with having imagined the new woman into existence through verse and song. Bharati’s new woman was fearless in her commitment to the national cause; she was an equal partner in the grand adventure of nationalism. (There was, however, “the muse and mascot element” — part of this new woman’s role was to inspire men to be courageous and self-sacrificing.)

Thus the play begins with an examination of the truism that Bharati’s new woman is an important ancestor of today’s feminist. Several female contemporaries of Bharati respond onstage through words from newspapers and magazines, diaries and letters. Together they suggest that we need to look beyond Bharati and ask a couple of new questions. What did the age of science mean to women, for instance? And did the emerging rationalist and anti-caste ideologies influence women?

Having considered the “new woman”, the play moves back in time to focus on the relationship between conversion to Christianity and status. What did the new religion mean to women? Which class or caste of women was drawn to it and why? Several stories emerge as these questions are tackled. There’s the story of Grace Samuel who spoke of marriage in terms of companionship. She felt her faith gave her the means to redefine her marriage as a relationship between equals and friends. There’s the story of Clarinda, a Marathi Brahmin widow, who dared to “live in sin” with an East India Company soldier. She was one of the first upper caste converts to Christianity. There’s the story of the Nadar women, who struggled, with missionary support, to gain the right to wear the breast cloth denied to them by the upper castes. There are also the stories of the numerous lower-caste women converts who worked with Amy Carmichael, an Englishwoman involved in rescuing girls dedicated to temples against their wishes.

Having arrived at the devadasi issue, the play allows us to hear two different female voices in tandem. Ramamrithammal and Muthulakshmi were two remarkable women from the devadasi community. Ramamrithammal was a community activist and a vocal member of the self-respect movement led by E.V. Ramasami (“Periyar”). She publicly denounced the priests, landlords and institutions responsible for the maintenance of the devadasi system. Muthulakshmi drew upon a discourse of rights and morality to argue against the devadasi system. But in their protest against the injustice of this system, both women had to adopt a “moral public voice” — either by castigating the immorality of the caste order and denouncing dasis who would not abandon their vocation as Ramamrithammal did; or by working to legislate the system out of existence as Muthulakshmi did.

But what was “moral” and why?

The play examines this vexed question through the life of a stage actress and singer, K.B. Sundarambal. Her troubled marriage and love life as well as her stage career attracted gossip despite a measure of legitimacy that came with her involvement with the Gandhian movement. The point is that women in public life were essentially vulnerable; and the tool that reduced them to this vulnerability was the construct called “morality”.

Who set the rules and standards of this morality? The play examines this dilemma through the public and political choices made by the women who became followers of Gandhi, the women active in the Tamil language purity movement, the women who participated in communist struggles. There’s a range of forgotten voices that are narrated back into memory through song and verse — from that of the intrepid Manalur Maniamma, who organized Dalit agricultural workers in east Tamil Nadu and who died in suspicious circumstances, to that of the Sufi thinker and novelist, Sidi Juaniada Begum.

The play ends with numerous women who were active and articulate in Periyar’s self-respect movement. Jeyasekari, Neelavathi, Kunjitham, Janaki — these are only a few of the women we discover as we hear their views on socialism, female labour, abortion, contraception, motherhood — in short, issues and debates we live through today. Critical voices are not muffled. With Periyar’s emphasis on self-criticism providing the context, we hear some sharp and acerbic comments on male activists in the self-respect movement who were unfailing radical — till they entered their own homes.

Finally, attempts like Kalakkanavu examine the concept and practice of feminism in a public setting. Could feminism be more than an idea, or a feeling? Is it a political choice that influences the personal and the political in equal measure? Answers are not always possible; and when they do come, they are rarely simple or unmixed with new questions. But what this debate of a play manages to do is acknowledge certain strands of history that remain incomplete. Then it asks questions, the first step in any significant project to understand ourselves.

An explanation of some terms for my non-Tamil readers:

Deva-dasi - literally, "God's maid"
In reality, a temple prostitute. The temple would pay their meager living expenses out of its revenues, and in return, the devadasis provided entertainment to the masses on special occasions, via song and dance, but more importantly, provided sexual services to the priests (and other men rich enough to pay for such service via the temple). Generally looked down upon by most of society - because they were prostitutes, and regardless of their supposed "status" as "maid of the Gods". Girls from poor and/or lower caste families were often sold into such sexual slavery, perhaps because the parents believed that it was a good thing for the girl ("at least she will always have a roof over her head"), or because they lived in such desperate poverty that the money brought in by selling the girl into this kind of slavery could help them educate the more-important boy child(ren), or because they were flat out greedy for the money.

Of course, considering that girls are still looked upon as a "burden" to their parents until they are married (when they become the husband's and in-laws' "responsibility"), even in this day and age when a majority of urban women are working second jobs outside the home, in addition to their first job of general household slave... I mention urban women in particular, lower-middle to middle-class, because that is what I am familiar with, and have observed. The poor, I have only observed in terms of the servant who used to work for my grandmother, cleaning the house, washing dishes, etc. I would see her go from house to house, doing a LOT of drudge work, to be paid a miserable wage in return. By the time I grew up enough to become a self-aware feminist, I had moved to the US, so all I can do from here is support the few legitimate charities that focus on helping them. As far as I am aware, the majority of rural women already do an enormous amount of work every day, inside and outside the house (mainly, working all day beside their men in the fields, then coming home and doing all the household chores as well, rearing children while being severely nutritionally challenged, among ever so many more disadvantages). I know I wouldn't last so much as one DAY!

Heh, somehow my explanation drifted into a rant... Usually happens on the occasions that I try to contemplate the role and position of women, past or present, in the patriarchial societies that predominate around the world. Notwithstanding the current circus playing around the Republican VP nominee being a woman - all that she possesses in common with any woman with an ounce of common sense and self-preservation is two breasts and a vagina. In every other respect, she is so anti-woman, it has to be seen to be believed. It terrifies me that she and ol' zombie-McCain might yet win this election (and if they do, I might just take up dear b-i-l's offer of a job in his company and move to England - that's how bad it can and will become here in the US of A if the voices of reason are trampled in favor of religion- and fascism-based insanity for another 4 or 8 years). I would much rather the US also had a multi-party system - the field looks ever so much better when you have actual choices - versus the kind of "this one is not as bad as that one, so I'll hold my nose and vote for him/her" dichotomy and stranglehold that the Republicans and Democrats have. Then the politicians will be actually forced to work in a multi-partisan environment and learn to live with compromises, instead of ramming through one party's objectives while mouthing pious rot about "co-operation in a bi-partisan environment." Hmmm... maybe I should move to England. Although New Zealand or Iceland would be way more tempting :-)

Argh! Feminist rant turned into political rant! Sorry folks, looks like this is ranting season at chez Radi - I am going to fall into silence again until my rant-y mood lifts.

Saturday, July 26, 2008


July 26, 2008

Note to any readers I might still have: I started this post several months ago, so please don't hold the "today" against me :P

Today I had my first singing lesson since I had the catheter implant surgery, waaaaay back in October last year. Turns out my vocal range is still mostly there - a full step down in the top range, as my teacher says, but my low range is intact. What's completely missing is any sign of stamina. And of course, the fluid didn't help.

Fluid? Yeah, fluid. Last night, I was so focussed on getting my dialysis started by 10pm, because my supplies for the next month would be coming in early this morning, that I totally forgot I would have to use slightly different programming, and a regular bag of dextrose solution for my last fill of the morning (and do a split midday exchange). Didn't realize my mistake until this morning. N very kindly offered to reschedule, but I refused. I had been waiting for this day for simply months! No way was I going to put it off, even if I did have my full complement of fluid for the day.

Speaking of fluid - I've in fact been consciously been speaking in shorter sentences, because I find that I lose my breath completely by the time I get to the end of long sentences. It is very disconcerting, because I've never had to think about breathing while speaking. I mean, we outgrow that by the time we learn to speak, ferchrissakes. I hate that - that and the completely unexpected hitch in my breath (almost sounds like a sob) as my diaphragm goes into spasms every now and then. VERY annoying.

But back to my lesson - I had a very enjoyable session with N. I have missed this so much all these long music-less months! I didn't notice the time pass at all, and WAY before I was ready, I had to leave. But I am set for the next 5 weeks at least, after which N and her husband are going on a cruise to the Galapagos Islands. Wish I could go to the Galapagos too! Anyway, I'll be there at her house like a burr, once she gets back.

Moving on to the present...

I haven't voluntarily cancelled a lesson since I started up again. In fact, since I wasn't able to attend the spring recital, and the summer one was cancelled due to lack of interest (there were exactly two singers willing to go on, and not enough songs prepared for even a half hour recital between the two of us - yeah well, what did you expect?! Of course I was one of the two), I now have a new repertory of 7 songs that no one has heard, except for N, of course, and her two kids, who are usually home when I have my lessons.

N says I have enough to have a small concert al my own, which we have yet to schedule. My aim was for after Amma gets back from CT. Now I have several people planning to visit (or flying in to live here) who are all going to be there the second week of September, so it is tempting to do it then. But I will have to really get ALL the songs in perfect shape for that, and with just 5 weeks to go, that's a little daunting. Not to mention all the work work work that is hanging over any plans, like that alien ship over the city in Independence Day... :-(

So if and when that solo concert happens, I will be sure to update you, all my two blog readers. Until then, adios!

Sunday, February 10, 2008

CCPD Part III - Setting up the machine

Read the CCPD posts in order, so they make more sense :)
CCPD, at last!
CCPD Part II - Training

Setting up the CCPD machine at home took longer than I expected it to - after all, it was just a matter of plugging in the machine, right? Yeah, right!

I started moving the boxes I'd left on the stairs up to my bedroom - it was past midnight at this point, so I had to do everything without creating too much noise. And realized that the top solution bag would have to be heated, so first thing I did was sweep the top of the nightstand clear of all the clutter, put the machine on there and plugged it in. Set the bag on top and let the machine warm it up (it would take at least a half hour to fully warm up the solution to a comfortable temperature).

Then I still had to clear out the drawers of the nightstand, so I could use the top one for the 2nd 6-liter bag and put some tubing supplies in the bottom drawer (while still having to have space for the flashlight, lightstick, antacid, and other stuff that usually littered the top of the nightstand). I took all the stuff out of the drawers and moved them to the bottom drawer of the other nightstand, and put some more supplies into the top drawer there.

I moved the nightstand closer to the bed, so I would have room to stack boxes between it and the wall. Took the box of red-cap dextrose solution (2 bags remaining), added the remaining 2 green-cap solution bags, and used that as the base to hold the box of pink-cap Icodextrin solution bags. My plan was to put the Ico bag on top of its box - but the level was too low, it had to be more or less at the level of the top of the nightstand. So I took one of the many empty boxes, turned it upside down and stacked that on top of the pink-cap box. So far so good.

The big 6 liter bag fit comfortably inside the top drawer, but now I had no room for my little tray of end-caps and hand-sanitizer. There was just enough room on the nightstand for the machine and my alarm clock. If I set the tray up there, I would just knock it over in my sleep when the alarm went off the next morning. I brought one of my handy little stools and set it by the bed. Now I couldn't open the nightstand - but that wasn't as big an issue because I could simply move the light-weight stool when I needed to open the drawers.

By this time it was past 1am and I was still trying to do everything ultra-quietly. But the outer bags of the solution bags are SO VERY NOISY! I opened all three bags and got out the instruction sheet (3 pages!). Then I had to figure out which was the drain line extension, of all the bags that I'd brought back with me. Once I got the drain line, I set it up to drain into the toilet and brought the other end into the room. It was a 12-foot extension, which gave me PLENTY of slack in the line. Next I opened up the cassette & tubing bag, opened the front of the cycler and inserted the cassette. Figuring out the spaghetti of tubing was another matter, although there was also a "tubing organizer inclulded with the cassette package. Going from right to left, the 6 tubes are:

Drain tube
Top (first) bag - red clamp tube
2nd and 3rd bags - white clamp tubes
Final bag - blue clamp tube
Patient line - the one that eventually attaches to my catheter

The nurse had explained that I should go methodically from right to left while connecting the tubing, so I wouldn't make mistakes. So I started with the drain line, attached it to the extension and made sure that the drain clamp and extension clamp were open. Yes, open. Next, I had to use the thingamajig (the CXD device) to punch the red-clamp line through to the solution bag on top of the machine, that was by now a warm-and-toasty body temperature. The next line went to the bag in the top drawer, ignore the line after that, use the blue clamp line to the final solution bag (the pink-cap Icodextrin solution). Then it was time to hit GO and sit back while the cycler primed the tubing with fluid, to remove all air bubbles in the tubing.

Priming... said the machine. And kept saying it for a good 15 minutes. Then I heard a sputtering sound from the bathroom, strode in and almost had my feet slide right out from under me. I'd forgotten to take off the plug at the end of the drain extension tubing that went into the toilet. And apparently, the machine was pushing hard enough to spray fluid all around the toilet. The door was wet almost half way up. I pulled out the plug at the end of the tube, and the machine happily finished priming. Meanwhile, I was looking for some way to secure the drain tubing to the floor and door jamb, so I wouldn't trip on it if I needed to get up in the dark. And then the solution came to me - I would tape it down, securely. After all, I had lots of tape to play with :)

And after that, all I had to do was connect myself, so I did, and gratefully fell into bed. It was 3am. Only to have the machine beep a warning "Patient line blocked," about 30 minutes in. Argh! I had accidentally kinked my catheter, and blocked the flow. Unkinked it, and made sure it wouldn't kink again even when I turned around in my sleep. And went back to blissful sleep :)

Do you KNOW just how absolutely blissful it is not to have to interrupt my sleep to do an exchange? Absolutely, utterly blissful. That's how blissful. You notice I said "blissful?"

CCPD Part II - Training

In the last post (CCPD, at last!), I left you all with the good news about my being able to sing again. I will elaborate on the process to accomplish that in another post. Let's go on with the story of the CCPD training, right now.

We started opening packages, the nurse and I - the fluid bags, and the CCPD "cassette" that has all the tubing required to accomplish the dialysis. There seemed to be miles of tubing, lots more than with manual exchanges. There was also this handy-dandy little mechanical thingamajig that we were to use to connect the tubes to the bags, and which was much safer than using our hands. I was flabbergasted when she told me we were going to use all three bags. She gave me a set of instructions on how to program the machine, which I dutifully followed, and then the machine was ready. She showed me how to work the lever on the front to insert the CCPD cassette, and then we started sorting out the various tubes attached to it. This was the drain line, that one with the red clamp was the line that went to the first bag, the next two went to any intermediate bags, and then the last tube with the blue clamp would go to the bag that would be used for the final fill.

Conveniently enough, there was a drain just at our feet, in that room that was used for CCPD training. In real life, at home, I would need to use a 12-foot drain tubing extension to drain directly into the toilet. Then we started using that little thingamajig to punch the tubes through to the bags, in order. Then it was time to "prime" the tubing - the machine would pump fluid through all tubes in use and make sure that it was all clear for fluid to flow in whichever direction it needed to. The priming takes about 5 minutes, so I started chattering (brainlessly, because I was nervous and excited). Once the machine beeped its OK, we checked to see that there was fluid to the top of the line that I would attach to my catheter - the patient line, as it is called. Then it was time to connect - and once that was done, all I had to do was hit GO. The machine drained the fluid out, pumped a new amount in, waited about 20 minutes, drained again and filled once again. Each drain-fill-dwell set is called a cycle, and for my training we would only be setting up the machine for 2 cycles, then final fill. This would take about 2 hours, during which I tried to nap, but only succeeded in dozing now and then because I would start awake each time the machine made any kind of noise.

I was wondering how the fluid in the other bags would be heated up to comfortable temperature, because only one bag was actually on the heating stand. Then as I watched the machine go through its priming phase, I got it - the first bag, being heated, would be used for the first drain/fill cycle, then while the dwell phase was going on (in this case for 20 minutes or so), the machine would mix around the fluid in the other bag(s) into the bag on top so by the time the next drain/fill cycle came around in 20 minutes, there would be fresh heated fluid in the bag on top! Neat idea, I must say. In real life, at home, my dwell time is about an hour and 45 minutes, plenty of time to heat all bags...

We finished up by 11:30am on Thursday, and I was home and online to work by 12:45pm. I didn't get to take the machine home that day because the one ordered for me hadn't arrived yet, because of weather delays in the mid-west. So I still had to come home and do my other 3 exchanges for the day. But that night was my last manual exchange - I haven't had to do a manual exchange since, and it is GRRRRRRR....EAT!

The next day, I left the house only at 7am, sure that Friday traffic wouldn't be bad at all, and I was right. I got there by 7:30am, but was left cooling my heels until 8am. This time, it was my own machine (it had arrived the previous evening), and the nurse merely watched while I went through the steps of programming the machine, and setting it up for that morning's 2 hour, 2-cycle session. She pointed out a thing or two that I missed along the way, and then started discussing emergency procedures - what to do if the power goes out, what to do if you need to disconnect right away, what if the machine shows an error, etc. And then she left me to the tender mercies of the machine, which clicked and whirred away cheerfully, draining and filling and mixing and dwelling. This time, the last bag was an Icodextrin bag, so I wouldn't have to do any more manual exchanges that day.

Once again, I was all packed up and ready to go by noon - training was over, and I could take my machine home with me. The machine itself, I put on the front passenger seat, and the whole trunk of my car was taken up with the supplies for the machine that would last me through Tuesday, which is when my month's supplies will arrive. The nurse had already called in all the changes to my prescription that would be necessary, so I wouldn't need to do anything more, just be home to receive the pallett-full of bags and tubes and cassettes and all.

I came home and promptly unloaded the car - supplies and all. 5 boxes of green-cap 6 liter bags (2 per box), 1 box of yellow-cap 6 liter bags, 1 box of pink-cap 2 liter bags (the Icodextrin, which is rated at 7.5% concentration), a few plastic bags of the tubing and other supplies necessary for the cycler. Took the machine out of the car first and lovingly laid it on the bed, while I figured out where to put it. There was really only one spot to put it in - on my left-hand nightstand. Which meant I would have to clear it out before setting everything up. I went back downstairs, and started unloading the boxes and figuring out which were the minimum supplies I would need upstairs for the night. Plopped the boxes on the stairs, ready to be taken upstairs, then sat back, absolutely pooped. Then my friend called and asked me to come over, because her 18-month-old twins were up. So of course I hurried over there, and spent a happy several hours. When I came back home, I was still pooped, and actually fell asleep on the sofa until 11pm.

After that, I still had to have dinner, so I did. Made a quick little chickpea chundal (I luuuurve those canned chickpeas, man!), had it with yogurt. High protein AND high fiber. Good, or what? :P

The next post (CCPD Part III - Setting up the machine)will have details of how I set up the machine at home.

Saturday, February 09, 2008

CCPD, at last!

This started out as one post, but it got so long that I decided to split it into two or more posts! So on with it...

Coincidentally enough, the first song I heard so very early on Thursday morning was Etta James' "At Last" - lovely lovely song, and what a voice! To make sure that I would be at the PD clinic by 8:00am sharp, I left home at the ungodly hour of 6:30am (well, aimed for 6:30 am, actually left at 6:45am, then realized I had to stop for gas. Argh!), and by the time I was really on my way, it was already 7am. I was dreading the traffic jams on the way in, which from experience I knew would be bumper-to-bumper most of the way. Didn't help that there was a traffic jam even before I reached the freeway, too early for some idiot to be out driving...

But let me start at the beginning. The week before, on Monday, I'd called the PD unit and complained that they hadn't yet called me in for CCPD training, and when were they going to? Well, Tuesday, the nurse called back and asked if I'd be available Thursday and Friday of the following week. IF I would be available? Hell, I rearranged my work life to BE available those two days! So I started counting down the days until I could have the cycler training. I didn't mind that I had to work really hard, harder than usual, in the days leading up to. I was going to have my cycler training! And I had absolutely no idea of what to expect. No idea how large the cycler was, although I knew it had to be small enough to be hand-luggage on a flight - but have you seen the size of some suitcases that people bring on flights as carryon bagagge?!!

I woke up at 5:30am that day, because I needed time to take a shower (I'd been working with my India team until almost midnight the previous night). I need roughly one hour to finish up my morning routine with shower, and I really wanted to be able to leave the house by 6:30am. I hurried through the shower, getting my dressing changed, picking out the outfit to wear that day, and was downstairs and almost ready to go by 6:!5am. I knew I needed a cup of coffee to stay awake through the drive... And by the time I finished the cuppa and responding to a couple emails, it was 6:35am. Got my socks on in record time, and was out the door. Got in the car, started it, then realized I'd forgotten my book. Run in again, get the book. Back in the car, I realized that I'd forgotten my dialysis log, so off I ran upstairs to get it. Finally, I managed to actually leave the house. Then one look at the gas gauge, and I groaned. I would have to stop to get gas, because I certainly didn't want to risk sitting in traffic all the way into Seattle with less than a quarter tank of gas.

What happened was - there was hardly any traffic on I5 heading into Seattle. I got there by 7:40am! Crazy weird, it was, because most other weekdays, traffic would be horrible. Mom, K and S would all readily testify to horrible traffic, I think. This time, in the clinic, I got the room with the bed, and there, finally, was the mysterious machine that I had been hoping would solve my singing issues. It was about 24x12x8in - about the size of 4 17" laptops stacked one on top of the other. There was a lever on the front of it, and a basic control panel, but nothing else. I couldn't see where any tubes would be connected. There was a BIG bag of solution on the machine, being warmed up - I saw that it was a 7 liter bag (picture bugging out eyes at this point). There was another big solution bag in the shelf below, as well as a regular-sized one.

Because I hadn't done my morning exchange yet (having left home at such an ungodly hour), I was getting anxious by the time the nurse came in at 8:00am. First thing I blurted out was, "I haven't done my morning exchange yet." And she said, "Good, because we are going to use the cycler to do a short cycle of 2 hours." She told me that she had a choice for me - I could entirely eliminate the daytime exchange if I used a relatively new sort of fluid, that used a different molecule (Icodextrin) instead of the regular dextrose. And the thing about this new fluid is that it NEEDS to be in the body for at least 8-14 hours to do its best work. Which nicely eliminated the daytime exchange, but it didn't solve the problem of the 2 litres of fluid that I would still have to have in me all day. I got a little upset at that point, because it meant that I still wouldn't be able to sing - I wouldn't need to do daytime manual exchanges, but I still wouldn't be able to sing.

And then my brain lit up with an idea - was there any way I could do a split exchange, that is, do a drain, go have my lesson, then come back and do the fill? The nurse said that of course I could, provided I didn't go more than 3-4 hours between drain and fill. That part was easy, because I could be at my lesson and back within an hour and a half. The not-so-easy part would be to remember to use not an Icodextrin bag the previous night, but just a simple dextrose solution bag (like my usual) for the final fill. *whack* That's the sound of palm meeting forehead - turns out I could have used this very split-exchange technique even while doing manual exchanges, so I need not have given up on singing at all! All these months lost... Oh well. But I was also literally dancing around the little room because I would be able to sing again!

And I will leave you with this happy thought, until the next installment of the CCPD training series (CCPD Part II - Training) :)

Friday, February 01, 2008

In other news...

I am finally going to get trained on the cycler - on Thursday and Friday next week. I wonder what my prescription's gonna be... As always, please remind me to post pictures once I get the machine home. Hah, who am I kidding? I doubt I'm going to post any pics of anything - promised photos of my dialysis corner (now rapidly expanding to take over my entire bedroom) notwithstanding - because I am too frigging lazy to take my camera upstairs, take some pics and upload them, then add them as links or embedded images here.

Oh I hope I hope I hope I won't have to have anything but a "keep the catheter afloat" amount of fluid during the day, so I can finally get back to doing what I have missed all these long months - SING!!

And THIS is why I didn't want to consider paying for a kidney in India...

I find the sale of human organs abhorrent - there's no way in hell I'll ever take part in it, or do anything that might possibly encourage it. There's no guarantee that the donation is voluntary, that the donor remains healthy after the kidney is removed, that there's any kind of medical followup for the donor, etc. No doubt because there's a market for these illegally acquired organs, there's a full supply chain, at the top of which are the usual suspects, and that chews up and spits out its victims, most of whom are barely literate, and who most likely don't have a clue about possible health repercussions, and are unlikely to look farther than the next meal, because of the daily scramble to make a living.

From the article:

NEW DELHI - Police said they were raiding hospitals and guest houses Monday as part of their investigation into an illegal transplant racket that removed kidneys from up to 500 poor laborers and sold their organs to wealthy clients.

Police suspect that dozens of doctors were involved in the kidney racket, which had a waiting list of some 40 people hailing from at least five countries.
... the Hindustan Times newspaper reported that those who were paid for their organs earned 50,000-100,000 rupees (between $1,250 and $2,500).

The kidney ring had a waiting list of dozens of people from India, the United States and Greece, according to the Hindustan Times. Several patients waiting for a transplant were at the facilities when police raided them Friday, but they were allowed to return to their countries without being held for questioning.

And why were the waiting recipients allowed to leave? They should bloody well be held accountable for their part in this. But oh wait - they are the ones with the money, so they get to go scot free. This makes me SO VERY ANGRY!!!

The doctors who would take part in such a thing - they are beneath contempt. I hope they are caught and punished, with a huge dollop of humiliation on top. Greedy buggers all up and down the chain... What the article I have linked to did not mention (but I heard in a radio news report of this) was that the people at the top of the chain got to sell each kidney (or other organ) at up to a 5000% markup over what the actual donor was paid.

I'd much rather remain on dialysis than take even an unwitting part in anything like this. If I can't find a donor among my family and/or friends, then so be it. I will wait. I will wait until some unfortunate accidentally dies, and their family donates the organs. And when I die, I want each and every part of my body that can possibly be used to help somebody else, to be so used, including skin.* The rest can go to a body farm or other biological research facility. I have a will and have stated as such in it.

*HAH - you didn't think of skin as an organ, did you? But it is - the body's largest! And cadaver skin can be used to save burn victims, for skin grafts, especially if the victim is burned over a large part of their body and needs large skin grafts.

Thursday, January 10, 2008

An amusing anecdote

So my brother had flown down from Connecticut to be with me on Dec 26th (the day I had my PD equivalency test). It was a Wednesday, garbage collection was very early the next day, so I put the very full and smelly garbage can out on the sidewalk. What I didn't realize that day was that garbage collection would be one day later that week because of the Christmas holiday.

As K was getting ready to leave the next evening, I asked him to go bring in the garbage can, which he did. Faithfully. All the way almost to the door between the house and the garage. It is one of his enduring, sometimes endearing, habits - he gets so absent minded, it is mostly amusing (after I'm done ranting, usually). He was in his usual I-may-be-here-physically-but-mentally-I'm-playing-my-perfect-game-of-tennis mode, so he forgot to even register that the garbage can was still heavy (in other words, not empty). So naturally he forgot to tell me that he brought in a bin that was still full of garbage into the garage. All the way up to the door into the house. I'm lucky he brought in my bin, and not one of my neighbors'. :P

Next day, I came into the garage to get some solution bags, and got a BIG whiff of "eau de garbage". I thought, "Huh. Note to self: Rinse out the garbage bin." It wasn't until I had to move the bin to get to the solution bags that I realized it was still full. Very carefully rolled the bin into the farthest corner of the garage, as far away from the house as possible. But I still had to live with a smelly garbage bin - by the time garbage collection time came around the next week, my bin was full to overflowing... and a very potent smell of garbage was beginning to permeate the house.

I gladly rolled the VERY full bin out to the sidewalk that week, I'll tell you that! Next morning, garbage had not been collected. I just thought they were late that day (it being Jan 2nd, after all). Came back from work that evening to see that the bin was still full, so I left it out one more night. The garbage-men came by on the Friday, instead of Thursday. Again.

In a huff, I went to look up the phone number for the waste-management company, to complain, and to ask if garbage collection was now changed to Friday mornings. And on the calendar they had sent me the previous year, I saw a * for the weeks of Christmas and New Years. *Garbage collection will be one day later when there's a holiday in the week*

Hmph! Deflated again. Palm, meet forehead *THUNK*

Tuesday, January 01, 2008

A link that everyone on or starting PD needs to have available

OK, so it is almost 3 years out of date, and it is only a page, not a blog, but it does have some useful information...

Radi's first adventure

Adventure, you ask? Yes, indeedy-doody, I reply.

As has become customary, I went to BFF CMR's house for New Year's Eve (I started the custom last year *heheh*). And we had good food, good wine and we played a fun board game, the name of which I don't remember now. But the real adventure lay in what came next: I was going to stay overnight!

What's the big adventure in staying overnight at a friend's, you might ask? Go ahead, I KNOW you're going to ask anyway. The big deal is that this is the first time I have stayed away from home sweet home for any duration longer than 8 hours, the max I can go between exchanges...

I went well prepared - well, except I didn't remember if I had taken the little baggie of extra supplies like masks, clamps and catheter caps. But I didn't have the time to turn back because I was already running late to meet J at the theater for a good bloodbath ("Sweeney Todd", in case you're interested). As it was, I made it with barely 5 minutes to spare to showtime! Was a good movie too, I must add. I had fun trying to keep up with the body count - and this bloodbath was more fun than the last bloodbath I went to see ("No country for old men"), because at least this had people bursting into good song. Some of the lyrics were so wickedly funny!

After the movie, J suggested we take a look at the view from the 28th floor of the same building (which is actually a Microsoft office location). So off we headed upstairs - the cafeteria has some really beautiful views through its picture windows AND from the balcony that runs along one side of it. For being the last day of December, it was a really mild day - we'd had bright sunshine all day, and by the time we got up to there, it was verging towards a beautiful pink sunset. And there I was on the 28th floor balcony, without needing a jacket! Of course, as soon as the sun went down, so did the temps - down to a few degrees below freezing, I think. Dunno, was in CMR's place, which like most houses other than mine, is a few degrees too warm for me.

So I didn't really know if I was going to be able to stay overnight at their house (I might have previously mentioned - J is CMR's husband :)), and I wouldn't until I checked the status of my daily solution-bag-heater bag. If I didn't have my extra supplies baggie, and if the little baggie of supplies in there was ehough to last the night and the morning, I would stay. Otherwise I would have to go back home in time for the next exchange after the last possible one with my travelling supplies. And miss the wine, conversation and just plain fun of the games (which I usually end up losing, by the way).

I took enough supplies with me to last until the midday exchange of New Year's Day. And when I got to CMR's, I found that I had been an incredibly (if unconsciously) good packer-of-supplies, because lo and behold! That little extra supplies baggie was there, tucked into the front zip. I have ABSOLUTELY no recollection of doing that before leaving home - my last memory of that baggie is that I set it out on the bed, all ready to be packed. Sometimes I feel that urge to pat my own back so much I almost pop my arm out of its socket :P

After the movie, J and I went our separate ways - me to go straight to CMR's house, him to get a cuppa joe before heading home. By the time I got to there, I was miserable - I'd finally had my flu shot for the year that morning, when I went to the doc's to get my weekly EPO shot. That, combined with the fact that I had drunk a full half-liter of water while eating most of a "medium" bag of popcorn (medium - HAH! it was ENORMOUS!), that I was mildly feverish, very sleepy and EXTREMELY bloated. I actually had to fight to keep from zoning out while driving there... a very odd feeling, that. Was never so happy to park in their driveway. Then I stood outside in the rapidly freezing weather, still sans jacket, banging on the door, loaded down with my full solution-bag-heater bag, ringing the doorbell, banging on the window. All to no avail. I could see CMR sitting on the couch with her daughter, but nothing I did could get her attention. I finally dug out my cell phone and called her - which thankfully she heard. Turns out her mother had been vacuuming, so she couldn't hear the doorbell, not over the noise of the TV and music as well.

I finally got into the house and THEN got my jacket on, because I still had one more trip out to the car to get the rest of my overnight supplies - the VERY HEAVY backpack with three solution bags in it and my overnight stuff. I lugged it into her spare bedroom, and announced that I would be staying overnight. Then I almost passed out, I was feeling that bad, so I flopped into bed for a nap. Somehow, every time I go to CMR's house, I seem to spend at least 50%-60% of my time there flat on my back, snoring my head off... I really need to break that habit. I mean, I got there at 4:45pm, was in bed for my nap at 5, woke up at 7pm, did my evening exchange, then managed to stay awake another 7 hours before succumbing to sweet slumber again (after the nighttime exchange, of course). Then I stayed in bed for the next 10 hours, only getting up for the morning exchange, before finally wandering out for my New Year's Day spinach omelette and a glorious cup of coffee :P

I hung around for a few more hours, until it was almost time for the next exchange - technically, I could have done that at their house as well, because I had all my supplies, but I really had to give myself the incentive to get home, because I had so much to do at home that I'd been neglecting during the holidays. Top of that list was cooking for the week, one of my most hated chores. So what did I do as soon as I got home? Called big sis on the way home, yakked with her for a while, meanwhile doing my exchange, made myself a VERY late lunch around 4:30pm.

Then I headed over to the Gold's Gym around the corner, feeling ever so virtuous because I was about to start a membership at the gym and an exercise program, on the first day of the new year. And what happened to that? The gym was closed, because it was New Year's Day. So much for THAT! So I headed over to a friend's house, and played with her two kids (aged 18 months and 5 months respectively). Then I came home, saw that the original movie version of "Sweeney Todd" was on cable, watched that as I did my evening exchange, then vegged out with one more movie before I ended the night. So much for cooking... HAH! Made myself a few dosas for dinner and went to bed, including the night-time exchange routine, of course.