I can't help it. I have too much to say and I love mischief. I have created a new blog-- I'm famous-- give me a kidney! This is in response to Natalie Cole appearing on Larry King and getting numerous offers from the public of their kidneys-- all to save her celebrity-hide.
Why should only famous people get offers of transplants? What about the rest of us? I have created this new blog as a service to the Chronic Kidney Disease community-- now we can post why we are famous and have the world offer their organs to us. Er um, well, I meant kidneys, livers, etc... but there just might be someone that offers up some rather interesting organs-- if you know what I mean. *wink wink*
So, please, visit my blog if you're kidney crank and let the kidneys roll in!
http://imfamousgivemeakidney.blogspot.com/
Note to Davita: Your days are numbered, bee-otch!
Nitey nite...
Michelle/Treasure
Wednesday, July 15, 2009
(What) Comfort in the Dialysis Center(?)
This one is from a discussion on www.ihatedialysis.com about comfort in dialysis centers. Here's my response:
For the most part, I have been happy with the professionalism of the dialysis staff in the centers where I've been treated (with the exception of visiting centers--yikes! travel is pretty much out of the question). Right now, there is some consistency in the staffing for our in-center nocturnal, so that has been a big improvement. Also, there is wireless internet now, but I don't use it because they wanted me to sign an agreement that I felt impinged on my freedom of speech-- and, a laptop (even one of the minis) would be too much to carry with all the other stuff I have to take for overnight in the center.
What I would like to see improved is the chairs (I have blogged extensively on the these torture devices), more cable stations (we have about 10 right now, not quite enough that's interesting for spending 24 hours a week on dialysis-- at night, no less), reasonable temperature control (three blankets is a bit much) and privacy.
Privacy is one of the biggest issues for me because 1) I don't want anyone seeing me while I'm being treated other than staff or family, 2) I don't want to see anyone else being treated (especially if they have the tendency to "die" almost every treatment), and 3) I'm doing nocturnal-- if I wanted everyone to see me while I'm sleeping I would invite them to cuddle up in my chair with me.
I met a design team (architect and interior design professor) at a work event and asked the professor about having one of his classes work up an ideal nocturnal dialysis design. His response was weak-- and so was that of the doctor who is running the study I'm participating in. This was disappointing because there would not be any cost to the center to have a design worked up, and the professor could have a whole new project for his students to work on (it would be easy enough to incorporate our needs into the objectives for student work-- especially since designing a "chair" is one of the main tasks).
Change comes slowly to the dialysis community. The change I see coming on the soonest is that I'm going to find a way to not have to stay on dialysis, hehehe. That will probably come long before a comfy chair or adequate partitions!
Nitey nite...
Treasure/Michelle
For the most part, I have been happy with the professionalism of the dialysis staff in the centers where I've been treated (with the exception of visiting centers--yikes! travel is pretty much out of the question). Right now, there is some consistency in the staffing for our in-center nocturnal, so that has been a big improvement. Also, there is wireless internet now, but I don't use it because they wanted me to sign an agreement that I felt impinged on my freedom of speech-- and, a laptop (even one of the minis) would be too much to carry with all the other stuff I have to take for overnight in the center.
What I would like to see improved is the chairs (I have blogged extensively on the these torture devices), more cable stations (we have about 10 right now, not quite enough that's interesting for spending 24 hours a week on dialysis-- at night, no less), reasonable temperature control (three blankets is a bit much) and privacy.
Privacy is one of the biggest issues for me because 1) I don't want anyone seeing me while I'm being treated other than staff or family, 2) I don't want to see anyone else being treated (especially if they have the tendency to "die" almost every treatment), and 3) I'm doing nocturnal-- if I wanted everyone to see me while I'm sleeping I would invite them to cuddle up in my chair with me.
I met a design team (architect and interior design professor) at a work event and asked the professor about having one of his classes work up an ideal nocturnal dialysis design. His response was weak-- and so was that of the doctor who is running the study I'm participating in. This was disappointing because there would not be any cost to the center to have a design worked up, and the professor could have a whole new project for his students to work on (it would be easy enough to incorporate our needs into the objectives for student work-- especially since designing a "chair" is one of the main tasks).
Change comes slowly to the dialysis community. The change I see coming on the soonest is that I'm going to find a way to not have to stay on dialysis, hehehe. That will probably come long before a comfy chair or adequate partitions!
Nitey nite...
Treasure/Michelle
Tuesday, July 14, 2009
I'll show you mine...
Yesterday some personage (I didn't know) came into the nocturnal unit and said he was going to take my picture. *HELLO* give a girl some warning before barging in taking her picture. My response to him was to bend over, but he didn't seem interested in taking a pic of my butt. And it's a most marvelous butt, too, all nice and flat, since I sit/lie on it 8 hours/3 nights a week at dialysis! Hooo! 
I think they were taking the pictures for the study to show how much more marvelous we look now that we're on nocturnal. The truth is, I don't look like death-warmed-over now, but I do look like I've aged 20 years. People used to guess my age in my mid-20s...now I look my age-- 46. Sure, the nocturnal will probably help me live longer, but sheesh, I would prefer not to do so looking like some old bag! I used to belong to the (slightly offensive) black-don't-crack crew, for shucks sake! (Google-it, if you don't have a clue).
Yes, a totally vain moment. And I'm entitled, because I'm worth it!...er no... well, maybe not.
I think they were taking the pictures for the study to show how much more marvelous we look now that we're on nocturnal. The truth is, I don't look like death-warmed-over now, but I do look like I've aged 20 years. People used to guess my age in my mid-20s...now I look my age-- 46. Sure, the nocturnal will probably help me live longer, but sheesh, I would prefer not to do so looking like some old bag! I used to belong to the (slightly offensive) black-don't-crack crew, for shucks sake! (Google-it, if you don't have a clue).
Yes, a totally vain moment. And I'm entitled, because I'm worth it!...er no... well, maybe not.
Tuesday, June 2, 2009
Tickling Your Funny Bone
Ok, I'll have more to blab about a little later, but right now, I wanted to give a shout out to Rerun, one of the regulars on I Hate Dialysis dot com. She has a string there called Dear Diary which is hilarious. Click the link above and get your funny bone tickled...
...and I'll get right back to you
Treasure/Michelle
...and I'll get right back to you
Treasure/Michelle
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"
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
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
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
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