This story astounds me. It seems that the judge hearing the Virginia challenge to the health reform law has ties to both the Virginia Attorney General who brought the case, and a Republican online communications firm called Campaign Solutions, from which he has been receiving "dividends." Dividends? Really? Since when does a communications firm pay dividends? I think there's another word for this.
If these facts are true, this judge should have recused himself as soon as the case was filed. If he rules in the State's favor, it will look an awful lot like bias. Judges should know better. Jennifer
Friday, July 30, 2010
Weight Part 6
This was supposed to be an exciting, triumphant week with my trip to Washington to speak at the National Press Club about my experience as a patient. I feel anything but triumphant. I came home and watched the video of the event, including my portion. The first time I watched myself, all I could see was how I looked. There were black rings around my eyes -- I look like a raccoon, although I know it's nothing more or less than intense exhaustion. And I am so, so fat. My eyes and mouth look like tiny fissures in a swollen and misshapen face. And my teeth are brown from too much illness, too much medicine. I was shocked at how awful I looked. After I got past that shock, I watched it again a couple of times. I did okay -- I made the audience laugh a couple of times, and I told a story in which I triumphed in the end, becoming a voice for people like me, with chronic illnesses. People came up to me afterwards and said I was a hero -- really. I don't feel like a hero.
My dad emailed me saying I looked exhausted and nervous but got my point across.
And so we have this week's theme: Nothing I do is ever good enough. The voices in my head keep saying it's not enough. Never enough.
Just when I was about to leave for yesterday's shrink visit, the phone rang and it was a very large foundation to which I've applied for a grant that would fund the creation of chronic illness care management training materials, along with the first four trainings around the country. "Do you have time for a couple of questions?" What do I do? What takes priority? "Sure," I said.
She wanted to know what qualifies me to write these materials. Um, let's see. I've been a chronically ill patient for 35 years. I have worked with literally thousands of patients with chronic illnesses. And I (along with the University of Michigan Center for Managing Chronic Disease) just finished a chronic illness survey, so we have data from 1800 patients and caregivers that tell us exactly what patients need help with. She wanted to know who would conduct the trainings. I would, to start with, and we would use a train the trainer model. And hopefully (if you give us the money we've asked for), we can hire Nicole full-time when she finishes law school and then she can do trainings, too. But can you pull this off, disseminating these materials nationwide? Yes, we can, I said. I rattled off other organizations who refer patients to use from all over the country. I threw in the fact that I spoke at the National Press Club the day before. She congratulated me on how well Advocacy for Patients is doing. But by the end, I felt like we are just too small and she doesn't believe I can pull this off.
But nothing I do is ever good enough.
So I got to my shrink 20 minutes late, rush and agitated and unhappy. I did my best to focus, but there was so much going through my mind. Everybody wants something. I have a meeting on my calendar that I know will waste my time, but I have to keep a client happy. I traded emails with a woman who is in desperate need of help, but she's also so angry that she tells me repeatedly not to bother calling her if I'm going to tell her there's nothing I can do. I spent an hour on the phone with a woman who's in a terribly difficult position, but we don't do medical malpractice, so I tried to find her resources. I emailed her a bunch of information and she emailed me that she feels so lost.
Nothing I do is ever good enough.
I never settled down enough to close my eyes and see what the blueberry jam girl is up to, or to hear the wisdom of my spirit guide. So she said, at the end, so the session would not be a total loss, "when you are a child and you're getting straight A's and the teachers say you're great and it's clear that you're very smart and you try to do everything right and your mother tells you you're a fat pig, you can never feel like anything you do is good enough."
My mother's voice is in my head and I hate it. Jennifer
My dad emailed me saying I looked exhausted and nervous but got my point across.
And so we have this week's theme: Nothing I do is ever good enough. The voices in my head keep saying it's not enough. Never enough.
Just when I was about to leave for yesterday's shrink visit, the phone rang and it was a very large foundation to which I've applied for a grant that would fund the creation of chronic illness care management training materials, along with the first four trainings around the country. "Do you have time for a couple of questions?" What do I do? What takes priority? "Sure," I said.
She wanted to know what qualifies me to write these materials. Um, let's see. I've been a chronically ill patient for 35 years. I have worked with literally thousands of patients with chronic illnesses. And I (along with the University of Michigan Center for Managing Chronic Disease) just finished a chronic illness survey, so we have data from 1800 patients and caregivers that tell us exactly what patients need help with. She wanted to know who would conduct the trainings. I would, to start with, and we would use a train the trainer model. And hopefully (if you give us the money we've asked for), we can hire Nicole full-time when she finishes law school and then she can do trainings, too. But can you pull this off, disseminating these materials nationwide? Yes, we can, I said. I rattled off other organizations who refer patients to use from all over the country. I threw in the fact that I spoke at the National Press Club the day before. She congratulated me on how well Advocacy for Patients is doing. But by the end, I felt like we are just too small and she doesn't believe I can pull this off.
But nothing I do is ever good enough.
So I got to my shrink 20 minutes late, rush and agitated and unhappy. I did my best to focus, but there was so much going through my mind. Everybody wants something. I have a meeting on my calendar that I know will waste my time, but I have to keep a client happy. I traded emails with a woman who is in desperate need of help, but she's also so angry that she tells me repeatedly not to bother calling her if I'm going to tell her there's nothing I can do. I spent an hour on the phone with a woman who's in a terribly difficult position, but we don't do medical malpractice, so I tried to find her resources. I emailed her a bunch of information and she emailed me that she feels so lost.
Nothing I do is ever good enough.
I never settled down enough to close my eyes and see what the blueberry jam girl is up to, or to hear the wisdom of my spirit guide. So she said, at the end, so the session would not be a total loss, "when you are a child and you're getting straight A's and the teachers say you're great and it's clear that you're very smart and you try to do everything right and your mother tells you you're a fat pig, you can never feel like anything you do is good enough."
My mother's voice is in my head and I hate it. Jennifer
Women Gain in Health Reform
The Commonwealth Fund says women have most to gain from the health reform law, mostly because they use health care services more than men.
This makes me worried about all the men who should be going to the doctor but aren't. Jennifer
This makes me worried about all the men who should be going to the doctor but aren't. Jennifer
Thursday, July 29, 2010
New Poll on Health Reform
People seem to be warming up to health reform as we start to see results -- new poll shows here. Jennifer
Tuesday, July 27, 2010
Me Streaming Live
Reminder: The Campaign for Better Care's forum on building better care is tomorrow, July 28 from 8:30 am to 11 am. The event will be streaming live here. I'm on the first panel, on patients and caregivers. I'm the patient! Enjoy! Jennifer
Monday, July 26, 2010
The 20th Anniversary of the Americans with Disabilities Act
How far we've come -- recognition of chronic illnesses as disabilities only a couple of years ago -- and how far we have to go. Read here for some of the accomplishments -- and some of the progress still to be achieved. And here is a nice opinion piece by Senator Tom Harkin. Next, a piece by/about the Obama Disabilities Adviser, Kareem Dale.
And check this out.
But why isn't this a bigger deal? Why did I have to search for a NY Times article instead of it being on the front page? Why isn't there a national holiday or a moment of silence or documentaries airing tonight showing the plight of the disabled in America? Why isn't this a really big deal?
Seems to me that we acknowledge the occasional ramp or grab bar and move on without fully recognizing how long it took us to get here -- only 20 years ago, in 1990, was the legal remedy for disability discrimination created, and only two years ago was chronic illness recognized for the first time. People may "get it" with respect to people in wheelchairs and people with seeing eye dogs, but they're a long way from "getting it" with respect to invisible chronic illnesses ("gee, you look good," they say, as if to ask if I'm really sick after all?).
So take today to think about how the ADA may help you -- and how it needs to evolve beyond where it is today. Jennifer
And check this out.
But why isn't this a bigger deal? Why did I have to search for a NY Times article instead of it being on the front page? Why isn't there a national holiday or a moment of silence or documentaries airing tonight showing the plight of the disabled in America? Why isn't this a really big deal?
Seems to me that we acknowledge the occasional ramp or grab bar and move on without fully recognizing how long it took us to get here -- only 20 years ago, in 1990, was the legal remedy for disability discrimination created, and only two years ago was chronic illness recognized for the first time. People may "get it" with respect to people in wheelchairs and people with seeing eye dogs, but they're a long way from "getting it" with respect to invisible chronic illnesses ("gee, you look good," they say, as if to ask if I'm really sick after all?).
So take today to think about how the ADA may help you -- and how it needs to evolve beyond where it is today. Jennifer
NHS Changes Afoot
Here's some information about changes to the National Health Service in Britain. Jennifer
Saturday, July 24, 2010
Regulations on Appeals
Well, I have read the new set of regulations and I am very excited. Although, based on our experience submitting insurance appeals both to insurance companies and through independent reviews, we will be writing substantial, detailed comments on some things that we think can be improved, the biggest news is that all plans (other than grandfathered plans) will have to provide independent reviews. These are external appeals through the state insurance departments, which contract with independent review organizations to review insurance company decisions. When an independent review organization overturns an insurer's decision, the independent review decision is binding.
Independent reviews already exist in most states for individual and small group plans, but for the first time, self-funded plans will be subject to independent reviews. No more self-funded plans doing essentially whatever they like without anybody looking over their shoulders. This will be a huge benefit to patients.
Other things besides coverage and claims decisions can be appealed. If, for example, your insurer retroactively cancels your policy, you will, for the first time, have a right to appeal.
For states that don't have strong external appeal processes, in a phased-in transition, you will be able to use a federal external appeal process instead. Indeed, insurers are expected to comply strictly with the internal appeal requirement -- and if they don't, consumers will have a right to go directly to external appeal through an independent review organization. Insurers will not be allowed to fail to comply with their own procedures and get away with it.
In my opinion, external appeals to independent review organizations are the most important consumer protection to have been developed over the past 10 years. The extension of external appeals to all plans will revolutionize the balance of power between insurers and consumers.
As I said, we will be writing comments, and will post them here for your review. But you will see that they largely are picky and technical, based on all of the experiences we have had with insurers over the years. For the most part, the regulations are a watershed in health insurance consumer protection. The balance of power will change. And that is nothing short of thrilling. Jennifer
Independent reviews already exist in most states for individual and small group plans, but for the first time, self-funded plans will be subject to independent reviews. No more self-funded plans doing essentially whatever they like without anybody looking over their shoulders. This will be a huge benefit to patients.
Other things besides coverage and claims decisions can be appealed. If, for example, your insurer retroactively cancels your policy, you will, for the first time, have a right to appeal.
For states that don't have strong external appeal processes, in a phased-in transition, you will be able to use a federal external appeal process instead. Indeed, insurers are expected to comply strictly with the internal appeal requirement -- and if they don't, consumers will have a right to go directly to external appeal through an independent review organization. Insurers will not be allowed to fail to comply with their own procedures and get away with it.
In my opinion, external appeals to independent review organizations are the most important consumer protection to have been developed over the past 10 years. The extension of external appeals to all plans will revolutionize the balance of power between insurers and consumers.
As I said, we will be writing comments, and will post them here for your review. But you will see that they largely are picky and technical, based on all of the experiences we have had with insurers over the years. For the most part, the regulations are a watershed in health insurance consumer protection. The balance of power will change. And that is nothing short of thrilling. Jennifer
Medical Care in the Workplace
One of our favorite NY Times reporters, Walecia Konrad, explains programs at large employers that help employees get and stay healthy here. Jennifer
Medical Loss Ratio Revisited
Under the new law, insurers must spend 80-85% of every premium dollar on health care. So what counts as health care? Defending against appeals of coverage denials? Fraud detection? Checking doctors' credentials? Or are these administrative costs.
According to this report, insurers are working hard to try to push things like this into the health care side of the equation. Of course. Jennifer
According to this report, insurers are working hard to try to push things like this into the health care side of the equation. Of course. Jennifer
Friday, July 23, 2010
More on New Appeal Regulations
I still haven't gotten my hands on the regulations themselves, but I continue to believe that this will turn out to be one of the most important consumer protections in the new health reform law. Jennifer
Health Insurers Raise Rates Despite Surplus
Blue Cross Blue Shield's are supposed to be nonprofits (unlike Anthem Blue Shields, which are for-profits). However, as the Washington Post reports, these nonprofits have built up huge surpluses while still raising rates an average of 20% per year. Can they really call themselves nonprofits? Jennifer
Your Medical Records
Pauline Chen's Doctor and Patient series has been brilliant. Her latest explains why it's so hard for patients to get their own medical records -- which, by the way, we have every right to do. Jennifer
Thursday, July 22, 2010
Weight Part 5
I thought today would be a positive session. After all, I have landed this amazing speaking engagement next week, I'm a good way towards getting a substantial grant to do some wonderful work, I'm talking with others about partnering opportunities -- I'm even feeling a bit better physically, which I attribute entirely to my new eating habits. Who knew mushy vegetables could make such a difference in my . . . er . . . bowel functions?
She saw that I was in a good place, but she wanted to know how deep it runs. One of her techniques is a sort of guided imagery. I close my eyes and myself as a little child comes forward. Then comes the angry teen-ager. For years and years, those two parts of myself were the only "characters" in this internal drama -- except, of course, for my spirit guide, who is not a person, but more a force, a center of energy that knows me better than I know myself.
Since we've been talking about my weight, there's been another "character," though. The blueberry jam girl, we call her, from the camp picture of me with blueberry jam all over myself. She doesn't speak; she eats. Constantly. She doesn't have legs. She sort of rolls, like one of those little walkers babies use to start getting used to standing. And she has blueberry jam all over her face.
Today, the little girl was happy and carefree, as she's been since I really worked through the terrible fear I had as a child, when there was no adult around to really take care of me. Since I've convinced her over the years that I will take care of her, she no longer is afraid.
Today, the angry teen-ager gave me a high five for landing this speaking gig, and seemed pretty much okay -- as she's been since I worked through the horrible anger I carried around for so long.
And today, the bluberry jam girl was eating. Non-stop. Disgusting. She doesn't talk; she just eats.
My spirit guide said I am doing well, but not well enough. I have to start swimming. I have to. And so I committed: On Monday August 2 -- after my trip to DC -- I will swim at 6 am.
How do they all feel about you making that commitment, Jenni? (She calls me Jenni as everyone did until I became a trial lawyer named Jennifer).
The little girl is good. The teen-ager is good. And the blueberry jam girl kept eating.
I said I wanted to take the food away from her.
What would happen if you did, she asked?
She would die. She has no other purpose except to be eating. All the time.
How would that be, if she died?
At first, I thought it would be okay, but then I realized she's part of me, and killing her isn't the right answer. So what if we gave her something else to do that she would enjoy?
Clothes, I thought. What if she stopped eating and, instead, did the things her mother wouldn't let her do. Like shop for nice clothes.
The blueberry jam girl stopped eating and perked up. She liked this idea. She was ready to go shopping.
And so the session ended with my plan to go to the mall and buy a nice blouse to wear in Washington next week with the obligatory black pant suit that any self-respecting lawyer would wear for such an occasion.
On the way to the mall in the middle of a work day -- something I never would allow myself to do if it were not "homework" from therapy -- I made a couple of decisions. First, I would not even look at price tags. Second, since I will be traveling to DC the day before, and I will change into comfortable travel clothes (and shoes) after the event, I would also look for two nice t-shirts to wear with leggings instead of my usual oversized t-shirts.
Things didn't go well at all. First of all, it was brutally hot even in the stores and especially in dressing rooms. Second of all, I have this really bad swelling of my feet -- we haven't figured out why yet, but it's very uncomfortable and makes it hard to enjoy walking for any reason. But most of all, nothing much fit.
I got a sleeveless vest-type blouse with a nice collar to wear with my suit, but it's white and plain and not the pretty blouse that I had hoped to find. There weren't a whole lot of pretty blouses -- there were bright florals and shiny rhinestone studs, but not right for business. I tried on a pretty pale pink blouse, but it was too tight in the arms and chest. I tried on t-shirts and they were okay, but not really right to wear with leggings. And many of them were too tight. I left Lord & Taylor with my white blouse and headed to Lane Bryant thinking they surely would have casual, large tops, but there was nothing right. I just hated how I looked in everything.
I have to lose weight. I am trying so hard. I am eating vegetables for dinner with maybe a 1/2 cup of pasta, tops. I have a bagel, egg and cheese for breakfast, which I guess is too much, but it doesn't seem like a whole lot. And I switched my mid-day corn muffin from regular to low-fat. There's nothing else fattening in my house besides some Snackwell (diet) cookies and 100 calorie bags of popcorn. But it's not good enough.
We both thought that the important part of the session was that the we would give the blueberry jam girl a new role. Instead of eating for my mother, she would enjoy clothes for me, was the thought. Instead, the important part of the session was what my spirit guide said: It's not good enough. I am not doing everything I can do. And I must. Because I am too fat and I hate it and it has to stop. Period.
I don't really know how I'm going to cut out a whole lot more, but I'm going to swim. And I'm going to try. And when I eat, I'm going to think about the blueberry jam girl. Perhaps that thought will make me nauseated enough so I'll put down the fork, put away the food, and find something to do that makes me feel better than I feel right now. Jennifer
P.S. - I post links to these blog entries about my weight journey on Facebook. The comments are interesting. A lot of people offer ideas about how I could better control my food intake, although most of them don't really understand how limited my diet is.
In response to this post, though, I got one really noteworthy comment:
Major food for thought.
She saw that I was in a good place, but she wanted to know how deep it runs. One of her techniques is a sort of guided imagery. I close my eyes and myself as a little child comes forward. Then comes the angry teen-ager. For years and years, those two parts of myself were the only "characters" in this internal drama -- except, of course, for my spirit guide, who is not a person, but more a force, a center of energy that knows me better than I know myself.
Since we've been talking about my weight, there's been another "character," though. The blueberry jam girl, we call her, from the camp picture of me with blueberry jam all over myself. She doesn't speak; she eats. Constantly. She doesn't have legs. She sort of rolls, like one of those little walkers babies use to start getting used to standing. And she has blueberry jam all over her face.
Today, the little girl was happy and carefree, as she's been since I really worked through the terrible fear I had as a child, when there was no adult around to really take care of me. Since I've convinced her over the years that I will take care of her, she no longer is afraid.
Today, the angry teen-ager gave me a high five for landing this speaking gig, and seemed pretty much okay -- as she's been since I worked through the horrible anger I carried around for so long.
And today, the bluberry jam girl was eating. Non-stop. Disgusting. She doesn't talk; she just eats.
My spirit guide said I am doing well, but not well enough. I have to start swimming. I have to. And so I committed: On Monday August 2 -- after my trip to DC -- I will swim at 6 am.
How do they all feel about you making that commitment, Jenni? (She calls me Jenni as everyone did until I became a trial lawyer named Jennifer).
The little girl is good. The teen-ager is good. And the blueberry jam girl kept eating.
I said I wanted to take the food away from her.
What would happen if you did, she asked?
She would die. She has no other purpose except to be eating. All the time.
How would that be, if she died?
At first, I thought it would be okay, but then I realized she's part of me, and killing her isn't the right answer. So what if we gave her something else to do that she would enjoy?
Clothes, I thought. What if she stopped eating and, instead, did the things her mother wouldn't let her do. Like shop for nice clothes.
The blueberry jam girl stopped eating and perked up. She liked this idea. She was ready to go shopping.
And so the session ended with my plan to go to the mall and buy a nice blouse to wear in Washington next week with the obligatory black pant suit that any self-respecting lawyer would wear for such an occasion.
On the way to the mall in the middle of a work day -- something I never would allow myself to do if it were not "homework" from therapy -- I made a couple of decisions. First, I would not even look at price tags. Second, since I will be traveling to DC the day before, and I will change into comfortable travel clothes (and shoes) after the event, I would also look for two nice t-shirts to wear with leggings instead of my usual oversized t-shirts.
Things didn't go well at all. First of all, it was brutally hot even in the stores and especially in dressing rooms. Second of all, I have this really bad swelling of my feet -- we haven't figured out why yet, but it's very uncomfortable and makes it hard to enjoy walking for any reason. But most of all, nothing much fit.
I got a sleeveless vest-type blouse with a nice collar to wear with my suit, but it's white and plain and not the pretty blouse that I had hoped to find. There weren't a whole lot of pretty blouses -- there were bright florals and shiny rhinestone studs, but not right for business. I tried on a pretty pale pink blouse, but it was too tight in the arms and chest. I tried on t-shirts and they were okay, but not really right to wear with leggings. And many of them were too tight. I left Lord & Taylor with my white blouse and headed to Lane Bryant thinking they surely would have casual, large tops, but there was nothing right. I just hated how I looked in everything.
I have to lose weight. I am trying so hard. I am eating vegetables for dinner with maybe a 1/2 cup of pasta, tops. I have a bagel, egg and cheese for breakfast, which I guess is too much, but it doesn't seem like a whole lot. And I switched my mid-day corn muffin from regular to low-fat. There's nothing else fattening in my house besides some Snackwell (diet) cookies and 100 calorie bags of popcorn. But it's not good enough.
We both thought that the important part of the session was that the we would give the blueberry jam girl a new role. Instead of eating for my mother, she would enjoy clothes for me, was the thought. Instead, the important part of the session was what my spirit guide said: It's not good enough. I am not doing everything I can do. And I must. Because I am too fat and I hate it and it has to stop. Period.
I don't really know how I'm going to cut out a whole lot more, but I'm going to swim. And I'm going to try. And when I eat, I'm going to think about the blueberry jam girl. Perhaps that thought will make me nauseated enough so I'll put down the fork, put away the food, and find something to do that makes me feel better than I feel right now. Jennifer
P.S. - I post links to these blog entries about my weight journey on Facebook. The comments are interesting. A lot of people offer ideas about how I could better control my food intake, although most of them don't really understand how limited my diet is.
In response to this post, though, I got one really noteworthy comment:
Thank you for sharing, Jennifer. You are so brave. I am a big advocate of guided imagery. My suggestion would be to imagine yourself loving that blueberry jam girl. Folding your arms around her and giving her a huge hug. She is a part of you, she deserves to be loved and you just may find...she will stop eating, and hug you right back.
Major food for thought.
This Makes Me MAD
Republicans and several conservative Democrats are pushing to extend the Bush tax cuts for the wealthy. These same members of Congress who opposed extending unemployment benefits and the COBRA subsidy because of the deficit don't mind spiking the deficit for the rich. How is it that they don't appreciate their own hypocrisy? How is it that the public isn't outraged?
Read here and here. Jennifer
Read here and here. Jennifer
Public Option Again
The LA Times reports today that 128 House Democrats are revisiting the idea of the public option for health care (an option, not a take-over). Why? Because it saves a TON of money. DUH! I doubt this is going anywhere, but the fact that these Reps seem to think they've discovered the Holy Grail when this is what all of us have been saying for years now just sort of cracks me up -- if it weren't so darn sad that they couldn't get it right the first time. Jennifer
Appeals Regulations Out Today
This may not sound very sexy, but one of the most important consumer protections to be developed in the past 10 years is the external appeal -- appeals to independent reviewers who can overturn an insurance company denial of coverage. Today, the regulations are issued that will make external appeals universal to all plans (except grandfathered plans), as well as strengthen internal appeal rights. You can bet that we will be analyzing them and writing comments.
This is a very big victory for consumers. Jennifer
This is a very big victory for consumers. Jennifer
Federal Government Take-over -- NOT!
Health reform really isn't a federal government take-over of health care, explains Politico. Lots of authority is left to the states and, in particular, state Insurance Commissioners. Jennifer
Wednesday, July 21, 2010
Senate Republicans Delay Vote on Unemployment Extension -- AGAIN!
Advocacy for Patients is nonpartisan, but really, do you have to be a Democrat for this to piss you off? Jennifer
Cuts in Home Care
Cuts in home care affecting the elderly and disabled are short-sighted ways to cut budgets, while ultimately increasing the cost of nursing home care for people who cannot remain independent without home care.
I'm not so sure these cuts are legal. The Americans with Disabilities Act requires that people with disabilities be allowed to remain in the community to the extent they can.
Anyway, read about it here. Jennifer
I'm not so sure these cuts are legal. The Americans with Disabilities Act requires that people with disabilities be allowed to remain in the community to the extent they can.
Anyway, read about it here. Jennifer
Watch Me Streaming Live
Next Wednesday, July 28, from 8:30 am to 11 am, I will be on a panel of patients and caregivers talking about 0ur experiences with the health care system. The event is being sponsored by the Campaign for Better Care, and it will be streaming live on their website. Enjoy! Jennifer
Medical Records in Real Time
How would you like to be able to read along with your medical records? It may be happening soon. Read here. Jennifer
Tuesday, July 20, 2010
Insurers Grade Doctors
The American Medical Association cries fowl. Insurance companies are grading doctors. The AMA says they are using flawed data. Do you trust your insurance company to grade doctors accurately?
Maybe we should have doctors grading insurance companies instead! Jennifer
Maybe we should have doctors grading insurance companies instead! Jennifer
Insurers Provide Care Management
When you get a call from a case manager for your insurance company, do you thank them for the help, or are you afraid that their goal is to deprive you of benefits? For me, I've always thought their job was to get me to use less -- fewer meds, fewer doctors, fewer tests. Or at the very least, stick their nose into something that's really none of their business.
Or is it? Here's an interesting take. Jennifer
Or is it? Here's an interesting take. Jennifer
High Risk Pool Update
Some states already have guarantee issue insurance -- insurance that has to be offered to you whether the insurer likes it or not. These states -- NY, VT, ME, NJ, MA -- can't quite figure out what to do with the new federal high risk pool since their guarantee issue policies make a high risk pool sort of redundant. But they still want a slice of the federal dollars going to pay for high risk pools. Of course. And so they battle. Jennifer
When Doctor Becomes Patient
A very interesting story on how it feels for a doctor to all of a sudden become a patient, and how easily one is transformed from one to the other. I don't wish illness on anyone, but I know a few doctors who could benefit from being on the other side of the relationship. And I think what's most striking of all to me is the fact that this doctor/patient's story ends at the beginning of her health care journey. She has no idea what's ahead of her. Jennifer
Breast Cancer Errors
This is deeply troubling. How do you respond? Do you still have the surgery, chemo, and radiation, or do you insist on second and even third opinion biopsies? Jennifer
Unermployment but NO COBRA
The Senate will pass the extension of unemployment benefits today, but without the COBRA subsidy. Read here. Jennifer
Monday, July 19, 2010
Doctor as Patient
A really interesting experiment, having medical students play the part of patients in nursing home. Read about what they learned from this experience. Jennifer
Sunday, July 18, 2010
Limiting Our Choices
Insurance companies are pushing plans that limit the doctors you can see. If you want a choice of doctor, or if you're already established with a team of doctors, you should worry about this. Jennifer
Thursday, July 15, 2010
Patient Centered Medical Homes: Ready for Prime Time
Finally, the mainsteam media is starting to talk about patient-centered medical homes. These are a new delivery system aimed at coordinating and improving care delivery for people with chronic illnesses. Based in primary care providers' offices, these "medical homes" are team-based, with the patient at the center a full partner in health care delivery.
Read the NY Times article and think about how much better you would feel if you knew all of your doctors were talking to each other, working together, and making sure you are fully informed and involved. I love it. Jennifer
Read the NY Times article and think about how much better you would feel if you knew all of your doctors were talking to each other, working together, and making sure you are fully informed and involved. I love it. Jennifer
Weight Part 4
"Don't call me daughter. Not fit to.
The picture left will remind me." Pearl Jam
Today's appointment was quite something. Today, I talked to my mother, my father, and every other adult who was around watching my mother feed me donuts and hot fudge sundaes ... WHAT THE F*CK WERE THEY THINKING?
My parents took me to a shrink when I was 9 years old. Dr. Sturm, I think. They thought I wasn't social enough because I mostly liked to read and be alone rather than playing with other kids. How could he not have seen me, 100 pounds overweight at that young age? How could he have done nothing, said nothing to protect me?
The guidance counselor at Willetts Road Middle School in Roslyn Heights, NY -- I can't remember his name -- Margy will -- but what on earth was he thinking? How could he have known how troubled I was, how fat I was, how I was eating, and done nothing?
My father was complicit. Everybody was complicit. They all gave me over to my mother, who was nothing short of completely nuts (seriously, at the end of her life, she screwed with one shrink too many and finally had a diagnosis) and I became her toy. She would swear she loved me more than anybody else in the world, but she took my childhood -- I had to be the adult taking care of her for my father, who would have done anything to get out from under that responsibility -- and she fed me and fed me and fed .... My father was fat. My brother was fat. I was fat. And nobody ever said anything. My mother was perfect. I was a troubled child ("breaking like the waves at Malibu" ~~ Joni Mitchell). She had all the power. I had only her, like having a handful of sand.
My grandparents. Aunts and uncles. Friends, family -- nobody said anything ever. Nobody tried to stop her. Nobody reached out to me. Nobody took responsibility. The responsibility was all mine.
The one area that I have never taken responsibility of? My weight. What I put in my mouth. I had no fun except eating. I had no childhood except being fed. I had no down time, no irresponsibility -- I was taking care of her. It was so wrong. Nobody tried to rescue me.
My father. He was here today. I told him I need to take the pictures of my mom down from the living room wall where they've been since she died. I told him I need something to replace them with. He asked me if I wanted a loan. No, you SOB, YOU OWE ME. FIX IT. YOU OWE ME. A FRIGGING PAINTING, dammit. I took care of her for you. I was why she could leave the house, to grocery shop, to her shrink, wherever -- she could never be alone and you sure wanted none of it. It's stupid, I know. A painting has no significance. I don't know why I think that's the right "payment." But two weeks ago, after the session in which I first talked about my mom's abuse, I daydreamed about taking the pictures of her over to his house when he wasn't home, taking my pick of what's on his walls, and hanging her pictures there instead.
Is it the culture? We didn't talk about abuse back then. Is it that she was beautiful and put together with clothes and make-up and nails and the whole deal? That she kept the house beautifully? Was it my fault that I was 100 pounds overweight when I was 9 or 12 or even 15? Really? Can anybody have believed it was my fault?
I feel physical pain as I write this with tears streaming down my face. I will always always always feel like a failure for not looking like her, dressing like her, wearing make up and doing my nails like her. I will always feel ugly. I will always ....
Or maybe not, because that's what this process is about, right? Nothing has to be always. Maybe I will find a way to take responsibility of the one part of my life on which I've always given myself a pass. Maybe I will take a little less responsibility over everybody else and get ahold of this demon. Maybe this time it will be for real. I want it. It's time now. I'm 53 years old. My mother is dead. My dad is happy. And there is nothing stopping me except all this baggage. And that is what therapy is for, shedding baggage, right?
I think I'll keep the pictures of her in the living room.
"Don't call me daughter. Not fit too.
The pictures kept will remind me."
Jennifer
The picture left will remind me." Pearl Jam
Today's appointment was quite something. Today, I talked to my mother, my father, and every other adult who was around watching my mother feed me donuts and hot fudge sundaes ... WHAT THE F*CK WERE THEY THINKING?
My parents took me to a shrink when I was 9 years old. Dr. Sturm, I think. They thought I wasn't social enough because I mostly liked to read and be alone rather than playing with other kids. How could he not have seen me, 100 pounds overweight at that young age? How could he have done nothing, said nothing to protect me?
The guidance counselor at Willetts Road Middle School in Roslyn Heights, NY -- I can't remember his name -- Margy will -- but what on earth was he thinking? How could he have known how troubled I was, how fat I was, how I was eating, and done nothing?
My father was complicit. Everybody was complicit. They all gave me over to my mother, who was nothing short of completely nuts (seriously, at the end of her life, she screwed with one shrink too many and finally had a diagnosis) and I became her toy. She would swear she loved me more than anybody else in the world, but she took my childhood -- I had to be the adult taking care of her for my father, who would have done anything to get out from under that responsibility -- and she fed me and fed me and fed .... My father was fat. My brother was fat. I was fat. And nobody ever said anything. My mother was perfect. I was a troubled child ("breaking like the waves at Malibu" ~~ Joni Mitchell). She had all the power. I had only her, like having a handful of sand.
My grandparents. Aunts and uncles. Friends, family -- nobody said anything ever. Nobody tried to stop her. Nobody reached out to me. Nobody took responsibility. The responsibility was all mine.
The one area that I have never taken responsibility of? My weight. What I put in my mouth. I had no fun except eating. I had no childhood except being fed. I had no down time, no irresponsibility -- I was taking care of her. It was so wrong. Nobody tried to rescue me.
My father. He was here today. I told him I need to take the pictures of my mom down from the living room wall where they've been since she died. I told him I need something to replace them with. He asked me if I wanted a loan. No, you SOB, YOU OWE ME. FIX IT. YOU OWE ME. A FRIGGING PAINTING, dammit. I took care of her for you. I was why she could leave the house, to grocery shop, to her shrink, wherever -- she could never be alone and you sure wanted none of it. It's stupid, I know. A painting has no significance. I don't know why I think that's the right "payment." But two weeks ago, after the session in which I first talked about my mom's abuse, I daydreamed about taking the pictures of her over to his house when he wasn't home, taking my pick of what's on his walls, and hanging her pictures there instead.
(I'm sorry, Dad. You don't have to read here if it's too hard. I need to be able to write what I need to write, though. I need this place, this space, for me. It's not that I don't love you. It's just that I don't understand how you could let her ....)
Is it the culture? We didn't talk about abuse back then. Is it that she was beautiful and put together with clothes and make-up and nails and the whole deal? That she kept the house beautifully? Was it my fault that I was 100 pounds overweight when I was 9 or 12 or even 15? Really? Can anybody have believed it was my fault?
I feel physical pain as I write this with tears streaming down my face. I will always always always feel like a failure for not looking like her, dressing like her, wearing make up and doing my nails like her. I will always feel ugly. I will always ....
Or maybe not, because that's what this process is about, right? Nothing has to be always. Maybe I will find a way to take responsibility of the one part of my life on which I've always given myself a pass. Maybe I will take a little less responsibility over everybody else and get ahold of this demon. Maybe this time it will be for real. I want it. It's time now. I'm 53 years old. My mother is dead. My dad is happy. And there is nothing stopping me except all this baggage. And that is what therapy is for, shedding baggage, right?
I think I'll keep the pictures of her in the living room.
"Don't call me daughter. Not fit too.
The pictures kept will remind me."
Jennifer
Unemployment but NO COBRA
Reports are that the Senate will pass an extension of unemployment benefits next week, but it will not include the COBRA subsidy. So short-sighted -- people who lose their insurance will go to emergency rooms and the taxpayers will end up footing the bill anyway. Why not just do the right thing? The majority of people support extending benefits. Although these polls didn't ask about COBRA, I bet the results would have been the same for those benefits, as well.
The calls I'm getting just break my heart. Jennifer
The calls I'm getting just break my heart. Jennifer
Chronic Fatigue
Is chronic fatigue syndrome linked to a virus? And if so, why are the results of the study being held back? If we could prove that people have chronic fatigue syndrome with a blood test, it would revolutionize quality of life and care for patients who suffer from this enigmatic disease.
Read here. Jennifer
Read here. Jennifer
Free Preventive Care
In regulations issued yesterday, the government detailed the new insurance coverage of preventive tests -- no copays or coinsurance -- FREE. I haven't read the regulations yet, so I can't answer your questions yet, but the basic idea is pretty wonderful.
No more excuse to skip your annual mammogram or screening colonoscopy. Jennifer
No more excuse to skip your annual mammogram or screening colonoscopy. Jennifer
20 Best Hospitals
If you wanted to know where to go for the best care in America, here's the list. Of course, the ranking may be different if you're looking at a particular specialty, but this is a good place to start. Jennifer
Wednesday, July 14, 2010
Gloria
If you know me or have followed my writing over the years, you know that Gloria Steinem has been one of the most important influences in my life, first through her writing, and later as she became a friend.
She and Jehmu Greene of the Women's Media Center were interviewed by Katie Couric for her web-based show, @katiecouric. The interview is archived here. The segment was produced by another great friend, Terry Schaefer. A great celebration of women by women. Enjoy! Jennifer
She and Jehmu Greene of the Women's Media Center were interviewed by Katie Couric for her web-based show, @katiecouric. The interview is archived here. The segment was produced by another great friend, Terry Schaefer. A great celebration of women by women. Enjoy! Jennifer
New HIV/AIDS Prevention Plan
The President and Secretary Sebelius rolled out an ambitious new plan to stop new HIV/AIDS infections. It's about time we got smart about stopping this awful disease. Jennifer
Let's Move
Michelle Obama has announced a new website called Let'sMove.gov. It's aimed at childhood obesity, but there's a TON of information there, including how to eat healthy, exercise safely, and other easy steps that can be taken to help this important cause. I know I will be reading. Jennifer
New Info for Two Big Diagnoses, Infusion Pumps
A medical society that treats Alzheimer's patients has proposed broadening the criteria for diagnosing Alzheimer's. The idea is to diagnose sooner so that drugs that help to slow the disease's development will have more time to work.
Meanwhile, the diabetes drug Avandia is in big trouble. The government says the drug's maker hid evidence of adverse effects from the FDA and the public. The manufacturer already settled a class action lawsuit brought by people who took Avandia and had heart attacks or strokes. Not good. If you're on Avandia, talk to your doctor.
Finally, there's a recall on Baxter International's IV pump model called Colleague. Baxter has to provide a refund or a replacement pump. Contact your home health company for instructions.
That's the news! Jennifer
Meanwhile, the diabetes drug Avandia is in big trouble. The government says the drug's maker hid evidence of adverse effects from the FDA and the public. The manufacturer already settled a class action lawsuit brought by people who took Avandia and had heart attacks or strokes. Not good. If you're on Avandia, talk to your doctor.
Finally, there's a recall on Baxter International's IV pump model called Colleague. Baxter has to provide a refund or a replacement pump. Contact your home health company for instructions.
That's the news! Jennifer
New Rules/Incentives on Electronic Medical Records
The federal government issued rules yesterday governing "meaningful use" of electronic medical records. The rules, discussed here, are aimed at helping doctors and hospitals get on board with electronic records. The idea is that electronic records would help with medical care, avoid duplication of tests, and eliminating medical errors. This, of course, assumes that doctors share the same system of electronic records. Eventually, I suspect each of us will have a single electronic file that any doctor can access with our permission. For now, look to hospitals and doctors' offices to go online with the available federal dollars. Jennifer
Tuesday, July 13, 2010
High Risk Pool Update
A slow trickle in the states that have begun enrollment in the Pre-existing Condition Insurance Plans (PCIP), reports Politico. There's also not enough information out there yet for people to assess whether the new plans work for them. I'm having trouble finding information on coverage and premiums. But this will all become more transparent in the coming months. If you need insurance and you have a pre-existing condition, don't count this out yet. Jennifer
Monday, July 12, 2010
When Is a Deficit Not a Deficit?
When, according to Republican Jon Kyl, expenditures are needed to avoid expiration of the tax cuts for the weathly, says HuffPo. When, instead, you need to come up with money for unemployment benefits or COBRA subsidies, the deficit is the rationale for not doing so.
You don't have to be a Democrat to see the hypocrisy in this. Jennifer
You don't have to be a Democrat to see the hypocrisy in this. Jennifer
Breathing New Life Into HIV/AIDS prevention
The President will unveil a new strategy to combat HIV/AIDS this week. HIV/AIDS remains a significant health crisis in the US and the world. Another person is infected in the US nearly every 9.5 minutes. And it's preventable. If you don't know how, read here and look for other reports around the President's announcement later this week. Jennifer
Congress Stalled
The AMA are complaining about not getting long-term repeal of the cuts to Medicare rates, but what about unemployment compensation, the COBRA subsidy, and aid to states for Medicaid funding? Congress has let us all down.
Let's be very clear. Only one Democrat has voted against, and that's Ben Nelson. So if you think you're going to vote for Republicans to get change in Washington, you'd better think again. Jennifer.
Let's be very clear. Only one Democrat has voted against, and that's Ben Nelson. So if you think you're going to vote for Republicans to get change in Washington, you'd better think again. Jennifer.
Friday, July 9, 2010
Useful Explanation of Health Insurance Jargon
Our favorite NY Times health care reporter, Walecia Conrad, explains the difference between copays and coinsurance, out-of-pocket limits, and other jargon that you need to know when choosing health insurance. Read carefully. In fact, you may want to clip and save this one. Jennifer
Thursday, July 8, 2010
Warren Buffet's Secret of Success
In an exclusive interview with Yahoo! News and The Huffington Post, he credited his father for teaching him how to live, and explained that all parents can make a "better human being" by offering their children unconditional love:
The power of unconditional love. I mean, there is no power on earth like unconditional love. And I think that if you offered that to your child, I mean you’re 90 percent of the way home. There may be days when you don’t feel like it, it’s not uncritical love, that’s a different animal, but to know you can always come back, that is huge in life. That takes you a long, long way. And I would say that every parent out there that can extend that to their child at an early age, it’s going to make for a better human being.
Buffett spoke from Sun Valley, Idaho, while attending the Allen & Company conference, an annual gathering of technology and media leaders.
Buffett, one of the most successful investors of our age, is known as the "Oracle of Omaha" for his wide-ranging views on economic, political and cultural issues.If only every parent did. If only every parent could. Jennifer
Penny Wise .... Uninsured
A leukemia patient on chemotherapy was $0.01 short on her insurance premium and her policy was canceled. She never got a COBRA notice, so she calculated her rate as best she could and was off by one penny. Her insurance was canceled. The insurer eventually relented, but the story was public by then.
What is it about insurance companies? I get that they have rules, but it seems to me that, if they don't want more and more laws passed to regulate them, and if they don't want to be seen as evil, they could start by not doing stupid things like this. Jennifer
What is it about insurance companies? I get that they have rules, but it seems to me that, if they don't want more and more laws passed to regulate them, and if they don't want to be seen as evil, they could start by not doing stupid things like this. Jennifer
Blaming the Victim
Federal unemployment benefits and the COBRA subsidy lapsed 36 days ago and there's still no fix ready to pass Congress. Is part of the reason the underlying belief on the part of opponents that the unemployed are unemployed because they're lazy, using the money for drugs, not trying to find jobs? HuffPo makes a convincing case that this despicable position is, in fact, at work. Ugh. Jennifer
Wednesday, July 7, 2010
Weight Part 3
Today was my weekly visit to my shrink. It was not as gut-wrenching as the past couple, but it was interesting. At the very least, going to her sort of has the effect of going to Weight Watchers -- a place where you go each week and report in on your progress, talk about what else needs to be done. Although with her, it's a little more intense.
I ordered a mini-exercise bike -- just the pedals, actually. You're supposed to be able to do it under your desk while you're working. So if I can't force myself to go to the pool, maybe I can force myself to pedal! Progress.
I cooked again last Saturday. I made it a little different this time. And I missed a couple of dinners -- not hungry Saturday night, got home too late from a memorial service last night. I will eat tonight and grocery shop tomorrow morning, although I probably won't need to buy the whole 9 yards with what's in my refrigerator. But the food situation is becoming the norm. Progress.
That memorial service, though. I've never seen anything like it. There were hundreds of people -- every elected politician (on the relative left, of course), union workers, advocates, family and friends. There was singing and a candlelight procession into the garden at Elizabeth Park. There were tales of Nancy's community organizing, her gardening, her marriage to John. And then there was a portion called Hero. And that's where I lost it. (Yes, this is relevant to my weight.) A wonderful song abut heroes accompanied by a slide show of heroes -- ML King, Rosa Parks -- you get the idea -- and then a picture of my beloved hero Ruth Pulda, whom I miss terribly. Her picture up there took me totally by surprise and so the tears came. And then Nancy.
I want to be a hero. My friend Gretchen says I am one, and I suppose anybody who does what they can to make the world a better place ought to be somebody's hero. But I will never have a memorial service like that. My family wouldn't have a clue who to invite or what I would want. And it's not the same if you have to plan it yourself. And really, I want to be a hero because I changed the world, not for a memorial service. After all, I will be dead, so the memorial service won't mean much to me. I want to be a hero because I touched YOU. Because your life is a little better for having crossed my path. I want to have mattered.
Is that grandiosity, ego speaking? Does everybody want to be a hero?
I take care of so many people. I am just now beginning to learn how to take care of myself beyond just caring for my illness, beyond being in therapy, but taking full responsibility for what I put in my mouth, how I look, what I weigh. I have recognized my mother's role. Now, it is time for me to focus on my own.
It is time to be my own hero.
Part of me feels that any session with my shrink that is not gut-wrenching is not fully productive. I should be making measurable, noticeable progress every week. I should be breaking through some barrier, some piece of my unconscious. I am afraid that, if I back off, I won't follow through. And so there is the truth of today: I do not trust myself to follow through if I ease off even the slightest bit.
And then my shrink sort of amazed me. She asked if I trusted her. Of course I do. No, she said. It took her 15 years or so to bring up the subject of my weight. She knew I was waiting for her to do so. I told her in our first visit that I had interviewed two women therapists. One was fat; one was thin. I chose the thin one because I thought the fat one would never be able to confront me about my weight. So I as much as told her that I expected her to bring it up, and she never did. So why now? I said I'm scary. She laughed and said yes, that's part of it. I am scary. But it's also where she was and where she is now. It felt weird that the conversation got to be about her. But she needed to sort of apologize. She said she had been remiss. I'm thoroughly convinced that issues get raised in therapy when we're able to deal with them. I am ready for this now. I wouldn't have been ready before. Each time I go back to therapy, I peel another layer off the onion. Trying to peel more than one layer at a time doesn't work so well. But she feels remiss, and I had to allow her that.
I need to trust myself. I will not turn back. And she needs to trust herself. She will not let me.
I am ready. And it's okay that this week wasn't that intense. I can trust myself. I can trust her. We are ready. And we are going down this road together. Jennifer
I ordered a mini-exercise bike -- just the pedals, actually. You're supposed to be able to do it under your desk while you're working. So if I can't force myself to go to the pool, maybe I can force myself to pedal! Progress.
I cooked again last Saturday. I made it a little different this time. And I missed a couple of dinners -- not hungry Saturday night, got home too late from a memorial service last night. I will eat tonight and grocery shop tomorrow morning, although I probably won't need to buy the whole 9 yards with what's in my refrigerator. But the food situation is becoming the norm. Progress.
That memorial service, though. I've never seen anything like it. There were hundreds of people -- every elected politician (on the relative left, of course), union workers, advocates, family and friends. There was singing and a candlelight procession into the garden at Elizabeth Park. There were tales of Nancy's community organizing, her gardening, her marriage to John. And then there was a portion called Hero. And that's where I lost it. (Yes, this is relevant to my weight.) A wonderful song abut heroes accompanied by a slide show of heroes -- ML King, Rosa Parks -- you get the idea -- and then a picture of my beloved hero Ruth Pulda, whom I miss terribly. Her picture up there took me totally by surprise and so the tears came. And then Nancy.
I want to be a hero. My friend Gretchen says I am one, and I suppose anybody who does what they can to make the world a better place ought to be somebody's hero. But I will never have a memorial service like that. My family wouldn't have a clue who to invite or what I would want. And it's not the same if you have to plan it yourself. And really, I want to be a hero because I changed the world, not for a memorial service. After all, I will be dead, so the memorial service won't mean much to me. I want to be a hero because I touched YOU. Because your life is a little better for having crossed my path. I want to have mattered.
Is that grandiosity, ego speaking? Does everybody want to be a hero?
I take care of so many people. I am just now beginning to learn how to take care of myself beyond just caring for my illness, beyond being in therapy, but taking full responsibility for what I put in my mouth, how I look, what I weigh. I have recognized my mother's role. Now, it is time for me to focus on my own.
It is time to be my own hero.
Part of me feels that any session with my shrink that is not gut-wrenching is not fully productive. I should be making measurable, noticeable progress every week. I should be breaking through some barrier, some piece of my unconscious. I am afraid that, if I back off, I won't follow through. And so there is the truth of today: I do not trust myself to follow through if I ease off even the slightest bit.
And then my shrink sort of amazed me. She asked if I trusted her. Of course I do. No, she said. It took her 15 years or so to bring up the subject of my weight. She knew I was waiting for her to do so. I told her in our first visit that I had interviewed two women therapists. One was fat; one was thin. I chose the thin one because I thought the fat one would never be able to confront me about my weight. So I as much as told her that I expected her to bring it up, and she never did. So why now? I said I'm scary. She laughed and said yes, that's part of it. I am scary. But it's also where she was and where she is now. It felt weird that the conversation got to be about her. But she needed to sort of apologize. She said she had been remiss. I'm thoroughly convinced that issues get raised in therapy when we're able to deal with them. I am ready for this now. I wouldn't have been ready before. Each time I go back to therapy, I peel another layer off the onion. Trying to peel more than one layer at a time doesn't work so well. But she feels remiss, and I had to allow her that.
I need to trust myself. I will not turn back. And she needs to trust herself. She will not let me.
I am ready. And it's okay that this week wasn't that intense. I can trust myself. I can trust her. We are ready. And we are going down this road together. Jennifer
If You Don't Have Health Insurance................
If you don't have health insurance and can't afford what's out there to choose from, here are some tips from HuffPo. I think these are pretty useful. Especially the one about making sure to get primary care on a regular basis so things don't spiral out of control. If you don't have insurance and can't afford to get it, you can afford to see a primary care provider at a federally qualified health center. To find one near you, go here, plug in your address, and check out the list of clinics nearby. And if you need prescription meds and can't pay for them, go here, choose either brand name or generic, and look up the name of the drug by letter of the alphabet. Just follow the instructions to apply for free meds.
Need something else? Email me at patient_advocate@sbcglobal.net and I'll see if I can find a solution for you. Jennifer
Need something else? Email me at patient_advocate@sbcglobal.net and I'll see if I can find a solution for you. Jennifer
Obama to Make Recess Appointment to Head Medicare
In a bold move, President Obama has announced that he will make a recess appointment of Donald Berwick to head the Centers for Medicare and Medicaid. Donald Berwick is a visionary. His nomination has been mired in the mud of partisan politics in Congress. Now, if only the President could extend unemployment and the COBRA subsidy without Congress, we'd be where we ought to be. Jennifer
Tuesday, July 6, 2010
Chase Gives Money to NonProfits -- VOTE NOW!!!
VOTE FOR ADVOCACY FOR PATIENTS!!!
We need about 10,000 votes in the next 6 days and we will be big enough to move, hire another lawyer or three, and really make a huge difference in the world. If you believe in what we're doing, please vote now!
Jennifer
We need about 10,000 votes in the next 6 days and we will be big enough to move, hire another lawyer or three, and really make a huge difference in the world. If you believe in what we're doing, please vote now!
Jennifer
Stay Hungry, Stay Foolish by Steve Jobs
| Transcript of Commencement Speech at Stanford given by Steve Jobs 6/14/2005 | Steve Jobs, Apple CEO Posted Wednesday, June 15, 2005 7:18:09 AM Thank you. I'm honored to be with you today for your commencement from one of the finest universities in the world. Truth be told, I never graduated from college and this is the closest I've ever gotten to a college graduation. Today I want to tell you three stories from my life. That's it. No big deal. Just three stories. The first story is about connecting the dots. I dropped out of Reed College after the first six months but then stayed around as a drop-in for another eighteen months or so before I really quit. So why did I drop out? It started before I was born. My biological mother was a young, unwed graduate student, and she decided to put me up for adoption. She felt very strongly that I should be adopted by college graduates, so everything was all set for me to be adopted at birth by a lawyer and his wife, except that when I popped out, they decided at the last minute that they really wanted a girl. So my parents, who were on a waiting list, got a call in the middle of the night asking, "We've got an unexpected baby boy. Do you want him?" They said, "Of course." My biological mother found out later that my mother had never graduated from college and that my father had never graduated from high school She refused to sign the final adoption papers. She only relented a few months later when my parents promised that I would go to college. This was the start in my life. And seventeen years later, I did go to college, but I naïvely chose a college that was almost as expensive as Stanford, and all of my working-class parents' savings were being spent on my college tuition. After six months, I couldn't see the value in it. I had no idea what I wanted to do with my life, and no idea of how college was going to help me figure it out, and here I was, spending all the money my parents had saved their entire life. So I decided to drop out and trust that it would all work out OK. It was pretty scary at the time, but looking back, it was one of the best decisions I ever made. The minute I dropped out, I could stop taking the required classes that didn't interest me and begin dropping in on the ones that looked far more interesting. It wasn't all romantic. I didn't have a dorm room, so I slept on the floor in friends' rooms. I returned Coke bottles for the five-cent deposits to buy food with, and I would walk the seven miles across town every Sunday night to get one good meal a week at the Hare Krishna temple I loved it. And much of what I stumbled into by following my curiosity and intuition turned out to be priceless later on. Let me give you one example. Reed College at that time offered perhaps the best calligraphy instruction in the country. Throughout the campus every poster, every label on every drawer was beautifully hand-calligraphed. Because I had dropped out and didn't have to take the normal classes, I decided to take a calligraphy class to learn how to do this. I learned about serif and sans-serif typefaces, about varying the amount of space between different letter combinations, about what makes great typography great. It was beautiful, historical, artistically subtle in a way that science can't capture, and I found it fascinating. None of this had even a hope of any practical application in my life. But ten years later when we were designing the first Macintosh computer, it all came back to me, and we designed it all into the Mac. It was the first computer with beautiful typography. If I had never dropped in on that single course in college, the Mac would have never had multiple typefaces or proportionally spaced fonts, and since Windows just copied the Mac, it's likely that no personal computer would have them. If I had never dropped out, I would have never dropped in on that calligraphy class and personals computers might not have the wonderful typography that they do. Of course it was impossible to connect the dots looking forward when I was in college, but it was very, very clear looking backwards 10 years later. Again, you can't connect the dots looking forward. You can only connect them looking backwards, so you have to trust that the dots will somehow connect in your future. You have to trust in something--your gut, destiny, life, karma, whatever--because believing that the dots will connect down the road will give you the confidence to follow your heart, even when it leads you off the well-worn path, and that will make all the difference. My second story is about love and loss. I was lucky. I found what I loved to do early in life. Woz and I started Apple in my parents' garage when I was twenty. We worked hard and in ten years, Apple had grown from just the two of us in a garage into a $2 billion company with over 4,000 employees. We'd just released our finest creation, theMacintosh, a year earlier, and I'd just turned thirty, and then I got fired. How can you get fired from a company you started? Well, as Apple grew, we hired someone who I thought was very talented to run the company with me, and for the first year or so, things went well. But then our visions of the future began to diverge, and eventually we had a falling out. When we did, our board of directors sided with him, and so at thirty, I was out, and very publicly out. What had been the focus of my entire adult life was gone, and it was devastating. I really didn't know what to do for a few months. I felt that I had let the previous generation of entrepreneurs down, that I had dropped the baton as it was being passed to me. I met with David Packard and Bob Noyce and tried to apologize for screwing up so badly. I was a very public failure and I even thought about running away from the Valley. But something slowly began to dawn on me. I still loved what I did. The turn of events at Apple had not changed that one bit. I'd been rejected but I was still in love. And so I decided to start over. I didn't see it then, but it turned out that getting fired from Apple was the best thing that could have ever happened to me. The heaviness of being successful was replaced by the lightness of being a beginner again, less sure about everything. It freed me to enter one of the most creative periods in my life. During the next five years I started a company named NeXT, another company named Pixar and fell in love with an amazing woman who would become my wife. Pixar went on to create the world's first computer-animated feature film, "Toy Story," and is now the most successful animation studio in the world. In a remarkable turn of events, Apple bought NeXT and I returned to Apple and the technology we developed at NeXT is at the heart of Apple's current renaissance, and Lorene and I have a wonderful family together. I'm pretty sure none of this would have happened if I hadn't been fired from Apple. It was awful-tasting medicine but I guess the patient needed it. Sometimes life's going to hit you in the head with a brick. Don't lose faith. I'm convinced that the only thing that kept me going was that I loved what I did. You've got to find what you love, and that is as true for work as it is for your lovers. Your work is going to fill a large part of your life, and the only way to be truly satisfied is to do what you believe is great work, and the only way to do great work is to love what you do. If you haven't found it yet, keep looking, and don't settle. As with all matters of the heart, you'll know when you find it, and like any great relationship it just gets better and better as the years roll on. So keep looking. Don't settle. My third story is about death. When I was 17 I read a quote that went something like "If you live each day as if it was your last, someday you'll most certainly be right." It made an impression on me, and since then, for the past 33 years, I have looked in the mirror every morning and asked myself, "If today were the last day of my life, would I want to do what I am about to do today?" And whenever the answer has been "no" for too many days in a row, I know I need to change something. Remembering that I'll be dead soon is the most important thing I've ever encountered to help me make the big choices in life, because almost everything-- all external expectations, all pride, all fear of embarrassment or failure--these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart. About a year ago, I was diagnosed with cancer. I had a scan at 7:30 in the morning and it clearly showed a tumor on my pancreas. I didn't even know what a pancreas was. The doctors told me this was almost certainly a type of cancer that is incurable, and that I should expect to live no longer than three to six months. My doctor advised me to go home and get my affairs in order, which is doctors' code for "prepare to die." It means to try and tell your kids everything you thought you'd have the next ten years to tell them, in just a few months. It means to make sure that everything is buttoned up so that it will be as easy as possible for your family. It means to say your goodbyes. I lived with that diagnosis all day. Later that evening I had a biopsy where they stuck an endoscope down my throat, through my stomach into my intestines, put a needle into my pancreas and got a few cells from the tumor I was sedated but my wife, who was there, told me that when they viewed the cells under a microscope, the doctor started crying, because it turned out to be a very rare form of pancreatic cancer that is curable with surgery. I had the surgery and, thankfully, I am fine now. This was the closest I've been to facing death, and I hope it's the closest I get for a few more decades. Having lived through it, I can now say this to you with a bit more certainty than when death was a useful but purely intellectual concept. No one wants to die, even people who want to go to Heaven don't want to die to get there, and yet, death is the destination we all share. No one has ever escaped it. And that is as it should be, because death is very likely the single best invention of life. It's life's change agent; it clears out the old to make way for the new. right now, the new is you. But someday, not too long from now, you will gradually become the old and be cleared away. Sorry to be so dramatic, but it's quite true. Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma, which is living with the results of other people's thinking. Don't let the noise of others' opinions drown out your own inner voice, heart and intuition. They somehow already know what you truly want to become. Everything else is secondary. When I was young, there was an amazing publication called The Whole Earth Catalogue, which was one of the bibles of my generation. It was created by a fellow named Stuart Brand not far from here in Menlo Park , and he brought it to life with his poetic touch. This was in the late Sixties, before personal computers and desktop publishing, so it was all made with typewriters, scissors, and Polaroid cameras. it was sort of like Google in paperback form thirty-five years before Google came along. I was idealistic, overflowing with neat tools and great notions. Stuart and his team put out several issues of the The Whole Earth Catalogue, and then when it had run its course, they put out a final issue. It was the mid-Seventies and I was your age. On the back cover of their final issue was a photograph of an early morning country road, the kind you might find yourself hitchhiking on if you were so adventurous. Beneath were the words, "Stay hungry, stay foolish." It was their farewell message as they signed off. "Stay hungry, stay foolish." And I have always wished that for myself, and now, as you graduate to begin anew, I wish that for you. Stay hungry, stay foolish. Thank you all, very much. |
Crystal
When Pat Baker from the Connecticut Health Foundation asked me to help one of their grantees, Crystal Emery, I approached it as I do every other tough case. Crystal has a very serious chronic illness, but really, that doesn't matter. Crystal is way more than a client. Crystal is a miracle.
Crystal runs a nonprofit called URU The Right to Be. Its mission is to combat racism in many ways, one of the most important being film-making. Their film, the Deadliest Disease in America, is a pointed tale of racism in health care. Watch the trailer here, and don't miss it if it is being shown near you. Here's the current tour. Hopefully it will be extended because this is something everyone needs to see.
Based on my experience, the discrimination in health care delivery is more about class than about race. White Medicaid recipients are treated like dirt, just like their Black counterparts. But Crystal's voice is so powerful. Just listen to it and take it in. Jennifer
Crystal runs a nonprofit called URU The Right to Be. Its mission is to combat racism in many ways, one of the most important being film-making. Their film, the Deadliest Disease in America, is a pointed tale of racism in health care. Watch the trailer here, and don't miss it if it is being shown near you. Here's the current tour. Hopefully it will be extended because this is something everyone needs to see.
Based on my experience, the discrimination in health care delivery is more about class than about race. White Medicaid recipients are treated like dirt, just like their Black counterparts. But Crystal's voice is so powerful. Just listen to it and take it in. Jennifer
Your Waste is My Care
So much waste, it says here. How much is being thrown away that could be used to treat those who can't afford care on their own? Jennifer
Blowing One's Top
In case you thought displays of emotion of all kinds -- including anger -- were bad, check this out. I find it liberation. Uh-oh!!! Jennifer
Friday, July 2, 2010
Weight, Part 2
I posted last week after my visit with my shrink to begin this chapter of my personal development in which I deliberately scour my psyche to try to understand the reasons for my weight and try to come up with a strategy for dealing with it.
The strategy part is working fairly well. I have been steaming veggies in the microwave until they're soft enough so I can digest them, adding them to some spinach cheese tortellini and hard boiled egg for protein, some black olives (because I love them) and cherry tomatoes, which my gut seems to be tolerating so far. It's my version of a pasta salad, but with no crunch so it's all easily digested. I've made it twice so far, and the ingredients for a third round are in my fridge. So far so good.
The psychological piece is so much harder. I saw my shrink yesterday and it was one of the toughest sessions ever. I talked about my mother's role in my weight. She fed me full of junk food and then told me how disgusting I looked. She made me wear the most awful clothes while she shopped Madison Avenue. She became close friends with the daughters of family friends with whom she could share manicures and shopping. She told me I was the most important person in the world to her, but she abused me. Yes, I am calling it abuse. To stuff a child full of donuts and hot fudge sundaes and then tell her she's a fat pig and force her to wear disgusting polyester fat clothes -- she orchestrated the whole thing, and I was her victim. It was nothing less than abuse. Maybe it doesn't sound as bad to you as being slapped across the face, but for me, as a fat 9 year old, it was worse. Nobody could see it except my father, and he was impotent (although he bears responsibility for this) to stop her. If anybody else saw it, they surely didn't do anything to stop it.
I remember years ago my sister in law said that my mother was so nasty to me in family gatherings, especially about my weight. I had become numb to it by then. And nobody said a word to my mother to get her to stop. My sister in law's comment sticks with me; she hates me, but maybe she didn't then. She may have been the only person ever to have seen what my mother was doing to me and say it out loud. By then, I had taken in the abuse and figured that was what I was worth, so I kept feeding myself and feeling disgusting, carrying around all this extra weight like a ball and chain my mother had attached to me at birth.
There is a part of me that is still that child. The fat girl in matronly polyester. The fat girl who was the victim of her mother's narcissism. The worse I looked, the more beautiful she felt. I knew she looked beautiful to others. To me, she was my tormentor, my torturer. She was a witch. I hated her and loved her both. I needed her and was repulsed by her. Her arthritic hand came to look like a claw from which I recoiled. She said she loved me, but she was crueler to me than anybody else ever has been.
At the end of her life, when my mother got sick, she needed me -- she needed an ally in the family, and since I was an expert at being sick, I was her natural ally. At the end of her life, she took care of me when I was sick. And I have allowed myself to hold onto that image of her, and actually miss her, actually feel alone when I'm sick now and she's not around. I have allowed myself to repeat what she did to me. When I look in the mirror and think "disgusting," it is her voice. When I pig out, it is her feeding me. When I am sick and alone, I remember only the end of her life when she cared for me, and not the three full years when I didn't see her, the surgeries I had without her being there, the inevitability of her abandonment. This. Was. NOT. Love. No.
My mother was not the woman who took care of me at the end of her life, when I was my very sickest. My mother was the witch who fed me and then told me I was a fat pig.
I can't begin to tell you how hard it is to write this. But not as hard as it has been to live with it in secret for 53 years. Jennifer
The strategy part is working fairly well. I have been steaming veggies in the microwave until they're soft enough so I can digest them, adding them to some spinach cheese tortellini and hard boiled egg for protein, some black olives (because I love them) and cherry tomatoes, which my gut seems to be tolerating so far. It's my version of a pasta salad, but with no crunch so it's all easily digested. I've made it twice so far, and the ingredients for a third round are in my fridge. So far so good.
The psychological piece is so much harder. I saw my shrink yesterday and it was one of the toughest sessions ever. I talked about my mother's role in my weight. She fed me full of junk food and then told me how disgusting I looked. She made me wear the most awful clothes while she shopped Madison Avenue. She became close friends with the daughters of family friends with whom she could share manicures and shopping. She told me I was the most important person in the world to her, but she abused me. Yes, I am calling it abuse. To stuff a child full of donuts and hot fudge sundaes and then tell her she's a fat pig and force her to wear disgusting polyester fat clothes -- she orchestrated the whole thing, and I was her victim. It was nothing less than abuse. Maybe it doesn't sound as bad to you as being slapped across the face, but for me, as a fat 9 year old, it was worse. Nobody could see it except my father, and he was impotent (although he bears responsibility for this) to stop her. If anybody else saw it, they surely didn't do anything to stop it.
I remember years ago my sister in law said that my mother was so nasty to me in family gatherings, especially about my weight. I had become numb to it by then. And nobody said a word to my mother to get her to stop. My sister in law's comment sticks with me; she hates me, but maybe she didn't then. She may have been the only person ever to have seen what my mother was doing to me and say it out loud. By then, I had taken in the abuse and figured that was what I was worth, so I kept feeding myself and feeling disgusting, carrying around all this extra weight like a ball and chain my mother had attached to me at birth.
There is a part of me that is still that child. The fat girl in matronly polyester. The fat girl who was the victim of her mother's narcissism. The worse I looked, the more beautiful she felt. I knew she looked beautiful to others. To me, she was my tormentor, my torturer. She was a witch. I hated her and loved her both. I needed her and was repulsed by her. Her arthritic hand came to look like a claw from which I recoiled. She said she loved me, but she was crueler to me than anybody else ever has been.
At the end of her life, when my mother got sick, she needed me -- she needed an ally in the family, and since I was an expert at being sick, I was her natural ally. At the end of her life, she took care of me when I was sick. And I have allowed myself to hold onto that image of her, and actually miss her, actually feel alone when I'm sick now and she's not around. I have allowed myself to repeat what she did to me. When I look in the mirror and think "disgusting," it is her voice. When I pig out, it is her feeding me. When I am sick and alone, I remember only the end of her life when she cared for me, and not the three full years when I didn't see her, the surgeries I had without her being there, the inevitability of her abandonment. This. Was. NOT. Love. No.
My mother was not the woman who took care of me at the end of her life, when I was my very sickest. My mother was the witch who fed me and then told me I was a fat pig.
I can't begin to tell you how hard it is to write this. But not as hard as it has been to live with it in secret for 53 years. Jennifer
Money
Congress sends $30 billion more to Afghanistan, but it can't extend unemployment benefits or the COBRA subsidy? What's wrong with this picture? Jennifer
Health Reform Accomplishments and Controversy
The NY Times has a pair of articles today, one reporting pretty favorably on how health reform implementation is going pretty well, and another reporting on oral arguments in a case in Virginia in which the state is trying to invalidate the new law.
So just when people are starting to feel good about it -- even some who initially opposed it -- 20 states are trying to strike it down. I'd like to know what those 20 states would do instead, because we couldn't afford to do nothing. Yesterday, I heard from a woman whose insurance premium was increased 36%. If we kept going in that direction, the ranks of the uninsured would have swelled beyond control and reason, and the taxpayers would have ended up footing the bill to pay for the care of those who could not afford to pay themselves.
I think 20 states are wasting hundreds of thousands of dollars on lawsuits that would be better spent trying to implement the new law as well as possible. But that's just me. Jennifer
So just when people are starting to feel good about it -- even some who initially opposed it -- 20 states are trying to strike it down. I'd like to know what those 20 states would do instead, because we couldn't afford to do nothing. Yesterday, I heard from a woman whose insurance premium was increased 36%. If we kept going in that direction, the ranks of the uninsured would have swelled beyond control and reason, and the taxpayers would have ended up footing the bill to pay for the care of those who could not afford to pay themselves.
I think 20 states are wasting hundreds of thousands of dollars on lawsuits that would be better spent trying to implement the new law as well as possible. But that's just me. Jennifer
Thursday, July 1, 2010
New Hope for the COBRA Subsidy?
New hope for the COBRA subsidy? Kaiser Health News reports:
Sens. Bob Casey, D-Pa., and Sherrod Brown, D-Ohio, are pushing a new bill, with a new way to pay for it, to extend a 65 percent health insurance subsidy that helps the laid off afford to keep their former employer's health insurance, known as COBRA. The Hill reports that the senators hope "their COBRA subsidy bill — which would pay for itself with more than $1 billion to spare [it'd cost $4.1 billion] — can win support from the budget hawks who have slowed the upper chamber to a crawl over deficit spending concerns." The subsidy ran out June 1, and people laid off after that date haven't been eligible for the subsidy "leaving more than 140,000 families ineligible each month, according to estimates from the National Employment Law Project, an advocacy group. … The Casey/Brown proposal would extend the enrollment deadline through November, retroactive to June 1. Those entering the program over that span would be eligible to receive six months of federal help." The lawmakers hope to pay for the program by eliminating a tax break on a specific type of asset transfer called a short-term grantor retained annuity trust (Lillis, 6/30).Fingers and toes crossed. Jennifer
Pre-existing Condition Insurance Plans
The high risk pools begin enrollment today. Read about them here and in my blog posts below. Find out what's offered in your state by going to healthcare.gov now.
If you've been uninsured for 6 months and you have a pre-existing condition, this is your answer. Finally. Jennifer
If you've been uninsured for 6 months and you have a pre-existing condition, this is your answer. Finally. Jennifer
IT'S LIVE!!!!!!!!!!
Healthcare.gov went live this morning. Want to know what plans are available to you? Want to understand the new Pre-Existing Condition Insurance Plans? Want to understand the health reform law? It's all in one place now, healthcare.gov.
Here's a good discussion of how the new website can work for you.
This is history, folks. Thrilling!!! Jennifer
Here's a good discussion of how the new website can work for you.
In a Q & A, Kaiser Health News reports: "In October, a more comprehensive
version of the website will be launched that will have extensive benefit and
pricing data, including premiums, deductibles and coverage limitations.
Eventually, the site will also include performance data on the plans, such as
what percentage of claims the plans reject, how much the plans' premium revenue
is spent on health care and the number of times patients appeal coverage
decisions"
This is history, folks. Thrilling!!! Jennifer
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