Grouch and Grow

Greetings, all. This will have to be a quick one since I'm on my break at work.

One of the most teeth-grinding experiences of dialysis is not getting poked with a ginormous needle-- it is having to meet with the social worker and/or nutritionist. These dialysis workers are almost always the nicest people. But oy! I can do without those appointments. I know they are just doing their jobs...but couldn't we handle such matters via email or video conference or something? I only feel the need to meet with them when I need something-- and most times I don't need anything. I always ask for my dialysis lab reports-- the real reports, not the smiley face ones... and other than setting up visiting dialysis, I haven't had much call for a social worker. I like being in charge of my care, and usually can find the answers I need on my own. And frankly, I have trimmed everything away from my diet that I intend to, and I can make the changes I wish after viewing my lab results. I dunno! I wish this was something I could do away with.

Something else I could do without...hmmm... those pesky monthly visits with the nephrologist. Now in my current setting, it isn't a problem. I love the nephrologist we have heading up the research study. And she visits us in the clinic-- at night, no less! She's a fantastic doctor-- one of the best I've ever had. I'm talking about the visits with past nephrologists. Where I would drive 45 minutes to basically be weighed and have my bp taken-- two things I can do at home and did all the time during my dialysis sessions. I would spend less than 5 minutes chitchatting with the doctor and that would be the end of the appointment. And the end of my $450. I dunno... I prefer to go to the doctor when there's a problem, or when I need some answers to some research I've done (and most times, that could be handled by email). My time is limited and valuable and any appointments I have to keep need to be necessary and solve problems-- before the parking meter gives out and my checkbook!

Oh and here's another thing I can do without... social workers bringing up patients that have been on dialysis forever-- like that's an achievement I want to emulate. Not! Almost everyone who's been on dialysis long term, that I have encountered, is crippled...or has multiple amputations or two dozen other really bad health elements. But they're still alive (cough, cough). And even if I were to beat the odds and be healthy, I wouldn't want a long-term life of dialysis. I'm coming up on 5 years now...and I'm inching towards my limit. Tilt! Game over. It's an effective treament that allows me to have a transplant long-term, or it's curtains. I have no interest in being on dialysis long term. I really should make that clear to any social workers that comes within 50 miles of me. UGH!


You grouch, you grow. And then you die. Which seems rather merciful, sometimes. Not today, necessarily. I would like to get my house fully cleaned before I go. And clean ain't happen anytime soon. hehehe. But the day you hear me say, "Merry Maids came by and my place is soooo clean..." well, you'll know it's time for the Michelle's Superstupendous Exit Party/Rave. Get your dancing shoes ready....

Michelle/Treasure says "Nitey Nite and Party On"

Keeping Busy

Wow, a lot of time has passed since I last blogged. I've been superbusy at work and my computer was down for a couple of weeks while Dell decided whether or not they were going to own up to the problems the XPS M1330 has. le sigh.

What's been happening on the nocturnal dialysis front? Well, I have been reading at dialysis the past couple of weeks. I started and finished all 4 of the Twilight books. That got me on a vampire novel kick. I'm not saying that Twilight, New Moon, Eclipse and Breaking Dawn will join the great literature canon, but there's something to be said for selling a gazillion copies. Kudos Stephenie Meyer. Maybe I'll start a novelization of my dialysis experiences. Chapter One: Dr. Youknowwhoyouare, take a size 14 dialysis needle and stick it where it don't shine!

These Twilight stories of a teenage girl who falls in with a vampire classmate and his vampiric family are perfect dialysis reading. Why? Well, it's nice to read about someone else getting the blood sucked out of them, ya know? I wish I could have a vampire lover who would pierce my supple neck with his pointy fangs and suck all the bad stuff out. That would beat dialysis any day.

And I can deal with the undead stuff-- I'm already undead from my kidney disease anyway. I'm living on borrowed time, should be dead, but lo and behold I'm still sucking air. And, hey, in the vampire book I just finished, Robin McKinley's Sunshine, the vampire lovers have super long-lasting erections. I could get a side order of vampire loving with my fangoric dialysis treatment. Sweet! I think I've got something here worth exploring. Now I just need to find a willing vampire...

What else is going on? Well, I've written about personnel issues before. Ahem. I still don't think the personnel issues are ironed out. I know my dialysis center is searching for staff because I've seen their ads posted on the internet. We had a tech come in and "try out" nocturnal the other night. Of course, that would be the night my blood pressure (uncharacteristically) bottomed out and I started projectile vomiting, hehehe. I don't know if that tech is going return. We have this tech now-- let's call her Gertie Gumdrop-Britches, who is a fantastic tech and she has been with us since the beginning of the study. I do hope they keep her. She knows her stuff...and she knows me by now. I really need consistency in my dialysis staff. I'm not sure I can continue doing the nocturnal if they diddle with the staffing. Unless they are bringing in a team of vampire techs and nurses. In which case, Gertie, it's been nice knowing ya! hehehe

I don't know that I'm going to be able to enter the Miss Fistula Beauty Pageant. My fistula took a hit (metaphorically, well, mostly) last week when we tried to stick in the no-man's land again. It infiltrated-- yet again. That makes 3 years of trying to use my upper arm, and I think we have proven conclusively that it can't be done. Likewise with establishing buttonholes. My fistula is just resistant to the whole idea. And we have tried about 4 times now...over the past 3 years and they just won't take-- no matter how careful we have been to establish the buttonholes the right way. My fistula's uncooperativeness just means that I'm going to have to find an alternative to dialysis.

Oh CureforFSGS where are you?

Until next time...nitey nite!

Michelle/Treasure

The Revolving Door

I will probably catch some shit for posting this, but the truth shall free us to have shit thrown at us.

I hate, hate, hate sudden personnel changes at dialysis. I know it can't be helped-- if one's son cuts off his sister's head-- maybe you have to quit. Or if one of the techs is humping the old ladies when no one is watching-- well, ok, let that person go. But lately at dialysis, it almost feels like a revolving door.

It takes me a long, long time to warm up to a new dialysis worker. There's the whole thing that noobs come in with their presumptions and you have to straighten them out.

"No, I do not use paper tape, even though every other patient does"

"Yes, it is quite normal for my blood pressure to be 240/120-- especially with your sudden appearance as the new fabulous dialysis nurse that we all cannot do without--even though you will only be here a month or so before they replace you with someone else..."

Ok, the first priority should be patient safety, and if you're getting rid of people because patient safety is at stake, then that's the way it should be. However, if one has "let someone go" because they raised issues or complained, well, if that's the standard, dialysis centers everywhere would be employee-less. le sigh.

Complaining by dialysis staff is constant. They complain about their hours, their pay, their bosses, their coworkers, the patients. But hey, they frequently have viable beefs. Though, when I look at their lives, in comparison to mine-- I do want to offer up a 64oz cup of SHUTTHEFUCKUP! Who's the one with a terminal illness that is taking 2-5 years to finish me off? Who's the one who's having to manage on reduced (or no) income and has 100k+ in hospital bills to pay off.

Anyway... I hate having to deal with new employees, and I hope they get their staffing shit together where I dialyze, and soon! This is distracting me from my chair saga. *rueful grin*

Michelle/Treasure

Are you sitting down?

Ok, yeah, like the chair arrived. And it does lie flat...hooray! And it sits upright... yay! And, I should be getting more sleep, now that I have the chair. But oddly, I fall right to sleep in the chair, but I don't seem to stay asleep. It's the strangest thing. But this I can say-- my neck isn't killing me, because the chair allows me to sit and lie in a more comfortable position.

Now if you know me, you know I'm never very happy for long... le sigh. I am eternally grateful for Sate providing the chair. I just have a hard time enjoying it knowing that others are also having disruptive sleep because of the chair situation-- and that we only have the one chair, with my ass in it, to try out right now. I will have to discuss this with the powers, but I think there are one or two people who need the chair more than I do, because I had learned how to force myself into sleep in the interim while we were waiting for the chair to arrive on its magic carpet (how else to explain such a long delivery delay?).

Maybe we could play musical chairs when we arrive at dialysis and the winner gets to use the magical chair for the night.

What to name the chair.

Hot Seat Harry

That works.

Oh, and I have one (or two) other complaints about the chair (it would not be my blog without complaints, now would it?) The chair is narrower than most dialysis chairs. And this just won't do, because my next request will be lap dances before lights out. Better grease up the poles, staffers, cuz you're going to be the entertainment at nitey nite dialysis. You know who you are *wink wink*

The Pajama Game

Ok, this one will be short and sweet because I'm posting during my break...which is short and sweet, especially if I have the real-butter shortbreads-- but I'm not this time, because I'm doing this instead.

The Pajama Game-- to wear or not wear the pajamas for nitey-nite dialysis. Well, at first I wore my pajamas. I went out and bought a special pair. You know, something that looks cute, but could be sexy. Yes, I need to be sexy for nocturnal dialysis. When else can I say that I slept with 6 or 7 guys in one night?

I wore pajamas the first few nights of nocturnal, and I really thought that everyone else would join in-- but no takers. And I felt foolish, so I started wearing shirts from my strange T-shirt collection and yoga pants. Now that's sexy!

But now we're 3+ months in, and we've added new patients...and there's a pajama wearer. Well, since he's wearing his jammies I'm going to have to start wearing mine again. Maybe a fancy peinoir this time around? Footed jammies? Long johns? Who knows, but I'll be sure to take pics and post them.

I'm wondering what other people wear for their nocturnals?

Shout hallelujah, come on, get happy!

Ok, no, the long-hoped-for flat dialysis chair hasn't arrived at the center yet, but I was looking over the stats for a nocturnal dialysis chair made by Diasol. They claim their nocturnal chair lies flat, and has a pull out foot rest. There are also options like heat and massage (though my center says that they don't have the electrical setup for juice-loving chairs). Ooooh, and the chair comes in different colors. I'm going to request a purple one- oh drat, I just looked and they don't have purple. Ah, well, maybe I should request a color that doesn't show blood (but we won't go there, now will we?). Let me see if I can put a picture of the chair in here... hold one.... hold one....



there ya go.

I like that the chair has a swing out arm feature, too...because I hate to see patients being precariously lowered into chairs with those lifts. So, scary.

My center says that they have ordered some chairs as a tryout, and I believe they are getting the ones I'm speaking about. Maybe I won't have to buy a dialysis chair afterall-- which is great, because I'd much rather buy a chair for my bedroom. hehehe.


Anyway...the link to the company that makes the chair is http://www.diasol.com/dialysis_chair.html

Take a look and tell me what you think?

That's all for this subject. Next topic: The pajama game.

Nitey nite...

Michelle/Treasure

And now for something completely different...

Ok...well, maybe not. More of the usual bitching, I'm afraid. I'm not getting enough sleep at dialysis...blah blah blah. The dialysis chair is killing my neck, blah blah blah. I keep falling asleep on my drive home, blah blah blah. Well, my last post about dialysis chairs garnered a response from my dialysis center. And that response was...? Well, I won't go into that right now, but let's just say that the last word was that "they" have ordered a couple of chairs to be tested out and that those chairs should be here soon(ish). My neck will be grateful when the chairs arrive...so will other assorted parts of me. I'm not going to complain any more (in this particular blog, hehehe) about the chair situation. There are many other things to complain about!


To my way of thinking, dialysis is someone's idea of a fun-creepy method of torturing people. Sure, the "someones" want you to think dialysis exists to prolong your life...but I dunno... sometimes it feels like a cruel, slow death-- like watching a Flavor of Love marathon. Here's what I mean...

...spending hours on end in an uncomfortable chair that causes neck pain, back pain, leg pain, ass pain. The treatments dry you up, dry you out, cramp your style and your legs, make you tired and sleepy. Is this not torture of some kind?

Ok, the fistula. The fistula they want us all to have-- this ginormous snaking thing that has utterly put me off of short sleeves forever. Mine pulsates like crazy (high flows, high blood pressure) and it sometimes works too well. Even crazier is that some stranger tries to stick these gigantic needles into this gyrating mess on my arm. This method of keeping me "alive" (and yes, I have to use quotes because if you saw what I look like today on the 1 hour of sleep I got at the dialysis clinic last night, you wouldn't be assured that I'm alive) is ...in-elegant. I'm not sure where else on my body I'd prefer to be connected to the dialysis machine-- hmmm... my back, maybe? So I wouldn't have to see it. Eeesh! How about my false navel-- the one they created for me during my hernia surgery. Oh yeah, I already tried an adominal catheter and that wasn't particularly sexy. Gee, I do miss my chest catheter(s). There wasn't any pain with it...I could stand up and do aerobics during dialysis with it. A fistula is a pain the arm (and the ass!). And ugh, yeah, ok, you could start buttonholes and perhaps it would be less painful-- but getting the damned buttonholes going on my fistula is nearly impossible. I don't know if it's flows... fast healing...anuerysms or what, but getting the buttonhole needles in is painful and usually doesn't work-- even after 2 months of trying. *le sigh*

Using a fistulas is painful enough (with all those sticks every session-- with or without lidocaine)... but then I have to protect my fistula while trying to sleep during nocturnal dialysis. I tell ya, the anuresis alarms we're currently using prolly aren't going to detect blood leaks on me because the damned things ends up everywhere but near my fistula. hehehe. Oh well. Since I'm usually awake during dialysis I can usually see when I've sprung a leak. An anuersis detector with dual probes would be much more useful than what we have now. Maybe I should patent that, hmmm.

Ok...enough about fistulas. I'm moving on to the television setups in dialysis centers. Whose bright idea was it to have televisions on the ceiling? Even if you're in bordello position (tm) in your dialysis chair, can you really watch television comfortably with the screen kissing the ceiling? And what's with the remotes? Is the goal to deafen all the patients? My remotes only work on "OFF" "DEAFENING" and "MOST DEAFENING." Argh! Sometimes it much better to watch the television with closed captions, en espanol!

Let's see, what else can I complain about? Ah, the darkness of the clinic for nocturnal dialysis... hmmm..well, not a problem for me-- since I don't sleep more than an hour or so at the clinic. But I imagine it is difficult for other patients, who need darkness to sleep. I did see one patient with a mask over his eyes, but I don't know if I would get much sleep like that. They do dim the lights in the unit, but I know that's not dim enough for everyone. Then there the noise problem, though the staff keep the guffawing down for the most part, at our unit.

Ah...I have a dozen other complaints. Hey, dialysis totally sucks ass. Nocturnal dialysis just sucks a little less (if you can get comfortable enough). Still seems like torture to me. But then I haven't tried waterboarding. Sh! Don't let the clinical staff hear that word, it may become a new treatment. hehehe.

That's enough for now...because I'm at work and the Net Nanny the City runs will probably go off in a bit and forbid to me to type another stroke. Next time I'll try to post about the flat-lying dialysis chairs that I discovered on the internet-- and who knows? maybe by then the new chairs will have arrived at the center and I can offer my thoughts. *smile*

Happy Zzzzssss.

Michelle/Treasure