Friday, May 29, 2009

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"

Sunday, May 24, 2009

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

Sunday, May 3, 2009

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