Hey people. It's been a while. Nice to see you again. But the reason for this post is not so joyous; I know I'm usually a happy-ish kinda person, but: not everyday goes as planned. Some days, they make you want to say, "I'm over this. Just over this." But I can't be over this; I've had type 1 diabetes for 24 years, and it's not going anywhere. C'mon researchers, I know you can do it!
Here's the context: I just started a new job. It's a killer gig, and I'm really excited about it. My working title is Executive Director of the Consortium for Data Analytics in Risk (CDAR) at UC Berkeley. The Economics and Statistics Departments are connected, as is a really forward-thinking industry partner, and there are two folks, plus a post-doc researcher I haven't yet met, churning research product pretty regularly. The mission is simple, yet elegant: work to bridge the academic and industry dimensions of data analysis regarding capital management and portfolio management, and minimize/mitigate risk in investment strategies. It's fantastic. And the people I'm working with are brilliant and very cool. On to the story.
This morning, had a meeting set for 10am. A meeting I arranged. A meeting I was looking forward to. A meeting that can happen another time, yes; but so what? I woke up, at 10:40am. Everyone's nightmare, right? Even more so here: I woke up to that familiar-yet-terrible low blood sugar feeling. And I was immediately pissed off, embarrassed, hungry for all of the carbs in the whole world, and hopeful they wouldn't want to can me. And then I had to make the phone calls and emails. That's the worst part. Knowing you screwed up, yet not even really, because not every blood sugar is preventable or knowable. Not every change in blood sugar can be traced to something clearly. That's one of the most irritating things about living with T1D: there is no blood sugar crystal ball. No matter how good you are at it, T1D can still surprise you.
I work pretty hard at managing this thing, while still having a life. Up through this past June, I was working three, and for a month, juggling four, part time jobs, and law school. Yeah, I know, I kinda asked for that batch of wildness. But out of all the things that can go wrong, this is the one that makes me feel powerless. As a wise cartoon once said, repeatedly, "that really grinds my gears."
I'm going to still work hard at making T1D work for me, as it already has time and again. But every once in a while, until we get this thing cured or auto-tuned, I know that it might kick my ass occasionally. I have to know it, and be willing to roll with it, otherwise it will make me crazy. For the most part, my life with T1D has been far better for it than in spite of it. But sometimes...sometimes blood sugars just kick your ass.
Showing posts with label health care. Show all posts
Showing posts with label health care. Show all posts
Friday, July 10, 2015
Thursday, February 3, 2011
Health care, a patient's perspective II
I wanted to write a little bit about how insane Ann Coulter is, but I think I'll leave it to all the others who are doing a great job: Glynnis MacNicol from Business Insider and Frances Martel from Mediaite featured on Talking Points Memo. Onward, to my next official blog post which hasn't happened since...crap, since I posted my last quickie for a class last semester.
This edition of Health care from a patient's perspective is going to focus on what happened when I tried to get insulin here in Hawaii. I gotta tell ya, my Weird Shitometer went batshit crazy. Here's the deal:
Last semester I didn't have health insurance...in fact, I didn't have health insurance from July 2010 until last week. I do feel lucky, in that calling up the health insurance folks who enroll us Instructors in the plans did move things along extremely fast, so thank you HMSA/EUTF employee I spoke with last week. Back to reality: I was running rully, rully low on 'slin. For those of you who know what I'm talkin bout, that ain't good. I saw my doc on campus, which cost me $20...doesn't seem like much, but hey, I was broke-ish. My bottle of Humalog was gonna cost me almost $150, and I'm grateful to my girlfriend who covered it for me at the time. Really grateful; I think I still owe her a couple foot massages.
After seeing the doc, I got my script, and headed to Walgreens here in Honolulu. As I was trying to pick up the insulin the first time, I started getting weird questions.
Pharmacy tech: "This doesn't say how much you're supposed to take per day."
My reply: "yes it does; it says I have an Insulin pump for a basal, and to take boluses by sliding scale with meals as needed...it changes based on how many carbs I'm eating, my exercise/activity, other factors..."
Pharma: "no, that won't work. We need to have specific directions otherwise we can't give you this lifesaving health product that you won't survive without. Sorry. Better luck tomorrow when the doctor's office opens and we can confirm."
Me: "uhh...ok? What's the deal, yo? I've never heard of this kind of weirdness before."
Pharma: "It's Hawaii law, so we can't get sued if you overdose."
Me: "Really? Is this state this weird? I've had diabetes for two decades, I'm in great shape and I'm really healthy. I think I'm capable."
Pharm: "Sorry, can't do it. We have to know that you know what you're doing."
Me: "20 years as a diabetic. Seriously. If I fuck up my own diabetes care, what am I suing you for? Irresponsible pharmaceutical activities? Slangin the wrong 'slin to a shady character such as myself?"
Pharm: "We'll call their office tomorrow, and we'll see you after."
Me: "Right on. I know this isn't your fault, but I'd love to know what the background is..."
So that's my Hawaii diabetes weirdness that sent my Weird Shitometer off the scales. Anyone else seen something funky like this?
This edition of Health care from a patient's perspective is going to focus on what happened when I tried to get insulin here in Hawaii. I gotta tell ya, my Weird Shitometer went batshit crazy. Here's the deal:
Last semester I didn't have health insurance...in fact, I didn't have health insurance from July 2010 until last week. I do feel lucky, in that calling up the health insurance folks who enroll us Instructors in the plans did move things along extremely fast, so thank you HMSA/EUTF employee I spoke with last week. Back to reality: I was running rully, rully low on 'slin. For those of you who know what I'm talkin bout, that ain't good. I saw my doc on campus, which cost me $20...doesn't seem like much, but hey, I was broke-ish. My bottle of Humalog was gonna cost me almost $150, and I'm grateful to my girlfriend who covered it for me at the time. Really grateful; I think I still owe her a couple foot massages.
After seeing the doc, I got my script, and headed to Walgreens here in Honolulu. As I was trying to pick up the insulin the first time, I started getting weird questions.
Pharmacy tech: "This doesn't say how much you're supposed to take per day."
My reply: "yes it does; it says I have an Insulin pump for a basal, and to take boluses by sliding scale with meals as needed...it changes based on how many carbs I'm eating, my exercise/activity, other factors..."
Pharma: "no, that won't work. We need to have specific directions otherwise we can't give you this lifesaving health product that you won't survive without. Sorry. Better luck tomorrow when the doctor's office opens and we can confirm."
Me: "uhh...ok? What's the deal, yo? I've never heard of this kind of weirdness before."
Pharma: "It's Hawaii law, so we can't get sued if you overdose."
Me: "Really? Is this state this weird? I've had diabetes for two decades, I'm in great shape and I'm really healthy. I think I'm capable."
Pharm: "Sorry, can't do it. We have to know that you know what you're doing."
Me: "20 years as a diabetic. Seriously. If I fuck up my own diabetes care, what am I suing you for? Irresponsible pharmaceutical activities? Slangin the wrong 'slin to a shady character such as myself?"
Pharm: "We'll call their office tomorrow, and we'll see you after."
Me: "Right on. I know this isn't your fault, but I'd love to know what the background is..."
So that's my Hawaii diabetes weirdness that sent my Weird Shitometer off the scales. Anyone else seen something funky like this?
Saturday, September 25, 2010
The first 'medicine from a patient's perspective'
Medicine in the United States is a complicated beast, mainly because of the differences in experience between professionals and patients. Not only that, but different professionals have different experiences within the context of working in medicine. (i.e. Nurses compared to practicing M.D.'s) That being said, I've decided to write this blog about medicine from the patient's perspective.
When you enter a hospital, say for a "routine appointment," you can never be sure you know what's going to happen. Also, having "routine appointments" assumes a great many things: you have health insurance or are substantially well off financially, you have a regular doctor to see that you like enough or trust enough to keep seeing, that you understand the potential consequences of not engaging in preventative medical care, ad infinitum. So with these things in mind, let's continue.
You've entered the hospital, and you're heading up to wherever your doctor's office is. There are sick people all over the place (which is appropriate given where you are) and medical pro's running around. Your heart rate starts creeping up, just with the almost palpable adrenaline levels creeping through the halls. You get to where you're going, and a receptionist more often than not says something like, "hi, welcome! Please sign in and we'll get to you as soon as we can." Most of the time, these folks are either professional receptionists, or nurses which kinda ticks me off because nurses have a ton of stuff to do already, but that's another post. You take a seat alongside the other waiting folks, and sometimes there are some sickies, sometimes you're practically alone. Depending on what kind of facility you're in, this could be consistent one way or the other.
Sometimes almost immediately you are called back, sometimes it takes an hour or less. The first nurse who leads you back into the shiny and band-aid scented exam area has you step on a scale emotionlessly, reads off your blood pressure, asks some general questions including, "why are you visiting us today?" Like 'visiting' really does it justice, but it can be comforting. You answer as best you can, and after a few minutes the nurse asks you to wait for the doc. This waiting period is terrible. You never know if the nurse is quickly meeting with said doc about how much you suck given your weight, blood pressure and habits you've briefly discussed with him/her, and whether they're planning to bust into the room shouting, "what the hell is wrong with you! You're gonna die!" Or perhaps the doctor is just finishing up with the two patients who went in before you did. Who knows, it's a mystery for the ages. There are only so many times you can re-read the "how to recognize suicide in yourself and your friends" pamphlet. Just saying, maybe some reading material in the treatment rooms?
The doc comes into the room. Usually they have an agenda based on their previous visit notes, and your current "situation," you know, the weight/bp/lifestyle stuff the nurse got outta you. The going assumption seems to be that docs don't care, but they have to have a game plan if they're going to get you to keep yourself alive, let alone get through the appointments and walk-ins they've had and will have during the day. The conversation is sometimes give-and-take, sometimes lecture (better take notes), and sometimes a mix of those two plus a visit from someone else on the team, say a dietician, or social worker. Then you're out, with a few pamphlets and some homework.
There are different places that do this in ways that feel better or worse than others. Some places are purely overloaded, and some places have a lot of money with which to actually hire enough medical and pro-staff. The differences can be striking. I've always been privileged to be able to find endocrinologist offices that actually serve as my primary source of medical care. I say this because when you're working full time and sometimes also part time, go to school and have a semblance of a life, there aren't enough hours in a business day to see more than one medical team. That's reality. It's also a very privileged and lucky reality and I know it. Here's where we find some disconnect: patient responsibility vs. medical responsibility.
Patients, we gotta do our part. There is no "wellness pill." There is no magical potion, no quick fix, no seemingly easy answer. You want that, go see an expensive and ultimately fucked up practioner of elective cosmetic surgical procedures. Not only will you be able to pay someone to look a certain way (assuming you have a ton of cash to burn), but you also will still die unhealthy. Good luck. We as patients have to do everything we can to keep ourselves together. It's a long process, and it's worth it as nurseXY is finding out and with good reason. (Keep up the good work bro.) And, the more you do for yourself, the better this doctor/nurse/patient relationship will be. Ask questions, no matter if you feel stupid. Get the information. Medical pro's can't know what you need unless you tell them, and it's impossible to always find the most important stuff online. Again, quick fixes can backfire big-time.
However, to all the medical pro's: we aren't all idiots. Some of us are, and I can't speak for them. They're jackasses, and they're suffering even as they suck. But some of us do care, not just about ourselves but about other people. Know that the intimidation we feel when our medical pro asks us, "any questions?" is real. We don't want to look stupid, even though you probably will be more than willing to either answer, tell us where to get the answer or have someone on the team help us. But it's not easy for many of us to feel comfortable. You're behind an opaque wall of mystery, and this means we're not always going to be willing to not only ask, but demand we be treated with respect and understanding.
This two-way street is remarkable in that there are so many twists, turns, and misunderstanding abound. And with medical care reform being not only futuristic, but incompatible with medicine as a business, we're in a perpetual state of denial about what our huge system really needs in order to function at a level that means we're successful on a broad scale.
The next installment will be 'the patients' perspective in a capitalistic medical market.' Hope y'all enjoy, or start talking.
Cheers,
-Street Philosopher
When you enter a hospital, say for a "routine appointment," you can never be sure you know what's going to happen. Also, having "routine appointments" assumes a great many things: you have health insurance or are substantially well off financially, you have a regular doctor to see that you like enough or trust enough to keep seeing, that you understand the potential consequences of not engaging in preventative medical care, ad infinitum. So with these things in mind, let's continue.
You've entered the hospital, and you're heading up to wherever your doctor's office is. There are sick people all over the place (which is appropriate given where you are) and medical pro's running around. Your heart rate starts creeping up, just with the almost palpable adrenaline levels creeping through the halls. You get to where you're going, and a receptionist more often than not says something like, "hi, welcome! Please sign in and we'll get to you as soon as we can." Most of the time, these folks are either professional receptionists, or nurses which kinda ticks me off because nurses have a ton of stuff to do already, but that's another post. You take a seat alongside the other waiting folks, and sometimes there are some sickies, sometimes you're practically alone. Depending on what kind of facility you're in, this could be consistent one way or the other.
Sometimes almost immediately you are called back, sometimes it takes an hour or less. The first nurse who leads you back into the shiny and band-aid scented exam area has you step on a scale emotionlessly, reads off your blood pressure, asks some general questions including, "why are you visiting us today?" Like 'visiting' really does it justice, but it can be comforting. You answer as best you can, and after a few minutes the nurse asks you to wait for the doc. This waiting period is terrible. You never know if the nurse is quickly meeting with said doc about how much you suck given your weight, blood pressure and habits you've briefly discussed with him/her, and whether they're planning to bust into the room shouting, "what the hell is wrong with you! You're gonna die!" Or perhaps the doctor is just finishing up with the two patients who went in before you did. Who knows, it's a mystery for the ages. There are only so many times you can re-read the "how to recognize suicide in yourself and your friends" pamphlet. Just saying, maybe some reading material in the treatment rooms?
The doc comes into the room. Usually they have an agenda based on their previous visit notes, and your current "situation," you know, the weight/bp/lifestyle stuff the nurse got outta you. The going assumption seems to be that docs don't care, but they have to have a game plan if they're going to get you to keep yourself alive, let alone get through the appointments and walk-ins they've had and will have during the day. The conversation is sometimes give-and-take, sometimes lecture (better take notes), and sometimes a mix of those two plus a visit from someone else on the team, say a dietician, or social worker. Then you're out, with a few pamphlets and some homework.
There are different places that do this in ways that feel better or worse than others. Some places are purely overloaded, and some places have a lot of money with which to actually hire enough medical and pro-staff. The differences can be striking. I've always been privileged to be able to find endocrinologist offices that actually serve as my primary source of medical care. I say this because when you're working full time and sometimes also part time, go to school and have a semblance of a life, there aren't enough hours in a business day to see more than one medical team. That's reality. It's also a very privileged and lucky reality and I know it. Here's where we find some disconnect: patient responsibility vs. medical responsibility.
Patients, we gotta do our part. There is no "wellness pill." There is no magical potion, no quick fix, no seemingly easy answer. You want that, go see an expensive and ultimately fucked up practioner of elective cosmetic surgical procedures. Not only will you be able to pay someone to look a certain way (assuming you have a ton of cash to burn), but you also will still die unhealthy. Good luck. We as patients have to do everything we can to keep ourselves together. It's a long process, and it's worth it as nurseXY is finding out and with good reason. (Keep up the good work bro.) And, the more you do for yourself, the better this doctor/nurse/patient relationship will be. Ask questions, no matter if you feel stupid. Get the information. Medical pro's can't know what you need unless you tell them, and it's impossible to always find the most important stuff online. Again, quick fixes can backfire big-time.
However, to all the medical pro's: we aren't all idiots. Some of us are, and I can't speak for them. They're jackasses, and they're suffering even as they suck. But some of us do care, not just about ourselves but about other people. Know that the intimidation we feel when our medical pro asks us, "any questions?" is real. We don't want to look stupid, even though you probably will be more than willing to either answer, tell us where to get the answer or have someone on the team help us. But it's not easy for many of us to feel comfortable. You're behind an opaque wall of mystery, and this means we're not always going to be willing to not only ask, but demand we be treated with respect and understanding.
This two-way street is remarkable in that there are so many twists, turns, and misunderstanding abound. And with medical care reform being not only futuristic, but incompatible with medicine as a business, we're in a perpetual state of denial about what our huge system really needs in order to function at a level that means we're successful on a broad scale.
The next installment will be 'the patients' perspective in a capitalistic medical market.' Hope y'all enjoy, or start talking.
Cheers,
-Street Philosopher
Wednesday, June 2, 2010
Response to Terry Belmont, CEO of UCIMC
Dear UCIMC CEO Belmont,
I agree with your assessment of the dangers of a nursing strike regarding patient care. It is unfortunate that nurses have had to take this drastic a stance on bargaining in a time when fair practices are supposed to be the norm. This is not the case however, and your subsequent implication that nurses would leave patients to die over a few dollars is a strikingly inadequate representation of the current climate nurses struggle to deal with.
I am not a nurse, CEO, or health care administrator. I am a part of a clinical research support office here at UCIMC, but more importantly, I am a patient. For 20 years I have lived successfully (for the most part) with type 1 diabetes and it is with the most sincere heart I write this today: nurses saved my life. They know I appreciate their work because I told them they were phenomenal. However, a great many nurses do not seem to feel that administrations and their staff understand the consequences of staffing shortages, salary freezes and litigation protection requirements making their job of saving lives all the more difficult, and unnecessarily so. Health care may be a service industry at its core; however the reality of our current situation is such that we cannot take lightly the differences in the motivation of certain sub-populations of health care employees. I must point out that yours is one of profit; nurses have no profit-sharing opportunities, in fact their only motivation to do their jobs is to save people, a lot of times from themselves, and to provide for themselves and their families.
I find it disingenuous as well as insulting that instead of highlighting the nursing excellence we most certainly have at work here on a fairly regular basis, this is what you have chosen to communicate to our community. Did nurses receive over $8,000 in transportation benefits? My guess: probably not. I would of course mention that the average nurse's schedule of 12-16 hour shifts might generate some overtime pay, however I doubt that many nurses are able to procure a salary of $630,000 which you currently enjoy. Furlough or not, your pocketbook greatly outweighs any of theirs by far. The fact that you do work that allows the health care professionals to continue their work is laudable of course. However, your direct interactions with patients probably do not include wiping feces off of sick children, adult trauma victims or the elderly. I would also guess that you probably do not engage in matches of wit with drunks and drug addicts who cannot see reason through the haze of intoxication. And I would highly doubt that you have started an IV, been vomited on and cursed at all in the same 45-second span recently. Let's just say, I appreciate your work, but you are no nurse.
I would gladly go without a raise if it meant a nurse received one. I would honestly prefer you voluntarily freeze payments on your Clinical Enterprise Recognition Plan compensation package which could conceivably provide health care costs for maybe a few nurses with children or subsidize health care premiums for maybe thirteen working nurses. That you would demonize nurses' call for fair compensation strikes me as not only distasteful, but also unkind and unwise. Please rethink your strategy Mr. Belmont.
Dean Clayman, I have benefited greatly from your vision and dedication to excellence. This cannot be a simple time for you, given your commitment to outstanding care and expectation of high quality medical education. This is an opportunity to show what it means to stand behind one another, and I hope you will continue your support of those who give themselves to the constant care of others.
Sincerely,
-Nicholas Gibson
I agree with your assessment of the dangers of a nursing strike regarding patient care. It is unfortunate that nurses have had to take this drastic a stance on bargaining in a time when fair practices are supposed to be the norm. This is not the case however, and your subsequent implication that nurses would leave patients to die over a few dollars is a strikingly inadequate representation of the current climate nurses struggle to deal with.
I am not a nurse, CEO, or health care administrator. I am a part of a clinical research support office here at UCIMC, but more importantly, I am a patient. For 20 years I have lived successfully (for the most part) with type 1 diabetes and it is with the most sincere heart I write this today: nurses saved my life. They know I appreciate their work because I told them they were phenomenal. However, a great many nurses do not seem to feel that administrations and their staff understand the consequences of staffing shortages, salary freezes and litigation protection requirements making their job of saving lives all the more difficult, and unnecessarily so. Health care may be a service industry at its core; however the reality of our current situation is such that we cannot take lightly the differences in the motivation of certain sub-populations of health care employees. I must point out that yours is one of profit; nurses have no profit-sharing opportunities, in fact their only motivation to do their jobs is to save people, a lot of times from themselves, and to provide for themselves and their families.
I find it disingenuous as well as insulting that instead of highlighting the nursing excellence we most certainly have at work here on a fairly regular basis, this is what you have chosen to communicate to our community. Did nurses receive over $8,000 in transportation benefits? My guess: probably not. I would of course mention that the average nurse's schedule of 12-16 hour shifts might generate some overtime pay, however I doubt that many nurses are able to procure a salary of $630,000 which you currently enjoy. Furlough or not, your pocketbook greatly outweighs any of theirs by far. The fact that you do work that allows the health care professionals to continue their work is laudable of course. However, your direct interactions with patients probably do not include wiping feces off of sick children, adult trauma victims or the elderly. I would also guess that you probably do not engage in matches of wit with drunks and drug addicts who cannot see reason through the haze of intoxication. And I would highly doubt that you have started an IV, been vomited on and cursed at all in the same 45-second span recently. Let's just say, I appreciate your work, but you are no nurse.
I would gladly go without a raise if it meant a nurse received one. I would honestly prefer you voluntarily freeze payments on your Clinical Enterprise Recognition Plan compensation package which could conceivably provide health care costs for maybe a few nurses with children or subsidize health care premiums for maybe thirteen working nurses. That you would demonize nurses' call for fair compensation strikes me as not only distasteful, but also unkind and unwise. Please rethink your strategy Mr. Belmont.
Dean Clayman, I have benefited greatly from your vision and dedication to excellence. This cannot be a simple time for you, given your commitment to outstanding care and expectation of high quality medical education. This is an opportunity to show what it means to stand behind one another, and I hope you will continue your support of those who give themselves to the constant care of others.
Sincerely,
-Nicholas Gibson
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