Good morning! Let's get right to the news:
Think your medical records are safe, private? Read this harrowing tale.
Under health reform, starting now, there's a $1 annual fee on all private insurance to fund comparative effectiveness research -- research that shows whether one treatment really works better than another. The GOP are complaining. They think this will lead to rationing. However, as we know, private insurers already "ration" to the extent of paying only for things they believe will work.
The American College of Physicians is taking the position that doctors should consider cost effectiveness when ordering services.
Adult day care centers keep seniors out of nursing homes -- but struggle for funding.
The Hartford has come up with a new life insurance product, a rider that allows the insured to draw down on their policy to cover the cost of chronic illness -- an alternative to long-term care insurance.
HHS has chosen 73 "innovation advisors" who will work with the Centers for Medicare and Medicaid services to foster innovation in medicine.
Research shows chiropractic and exercise are better than pain meds for neck pain. I've also read over the years that chiropractic can cause strokes. I don't know for sure, but I'd be careful and make sure you're seeing a reputable chiropractor.
And that's it for today -- a light news day. Have a great one! Jennifer
Wednesday, January 4, 2012
Tuesday, January 3, 2012
Happy 2012
And here I am in the office at 6 am so I can bring you this blog every day. One of my New Year's resolutions is to stop coming to the office at 6 am. That may mean a change to this blog -- maybe I won't read 8 newspapers per day; 4 or 5 would probably do. Anyway, we'll see how it goes. For today, it's the norm -- here's the news.
Expect 2012 to be a year in which we talk alot about Medicare. With the boomers joining the ranks, we can't afford to sustain what we have, some argue. But others says we must hold the line firm.
The Government Accountability Office found that the Department of Justice is not doing a good job policing standardized testing companies to ensure that disabled test-takers have the accommodations they need.
Some states are working on getting their Exchange up and running in time to sell insurance effective January 2014. But in states that are refusing to comply with health reform, there should be a federal fall-back Exchange -- but will it be ready?
The Pre-existing Condition Insurance Plan continues to be a great option for people who've gone without insurance for 6 months. It's grown to about 6000 in California alone.
10 provisions of health reform take effect in 2012. Not the really critical ones, but they may help affordability and care coordination.
California Blue Shield settled a lawsuit that requires them to pay $2 million for dropping people when they found out they were sick. A similar suit against Anthem still is pending.
When nurses catch compassion fatigue, watch out. If you've ever been in the hospital, you know that the key is a pleasant, caring nurse. But could you keep that up every day?
Smokers are paying more for health insurance. An incentive to stop smoking? We hope so.
There's a shortage of ADHD drugs. Hundreds of people are complaining to the FDA every day. Ritalin and Adderall are affected. The Drug Enforcement Agency set manufacturing quotas on these drugs to try to avoid street use, but the result is that kids don't have their meds. Along the same lines, although not mentioned in the news, Salix Phamaceuticals has stopped manufacturing brand name Colazal. They have a new, equivalent med coming out shortly that they thought would be FDA approved by now. But the FDA has held up the new drug approval, and this is leaving Crohn's and colitis patients without brand name meds.
Insured Americans share healthier habits than the uninsured. I suspect that's largely because insured Americans as a general rule are employed and/or financially sound.
Two new books are good for patients. Confessions of a Surgeon tells most of us who've been through surgery what we already know -- surgeons just do surgery, and nothing else. But the Patient's Checklist sounds really interesting -- a way to make sure you are getting appropriate and safe care. I was contacted last week to see if I'd read an advance copy and review it for you, so I'm waiting for it to arrive so I can get into it. And here's an interesting piece by a surgeon that makes me never want to go near an OR again.
New thoughts on treating anorexia nervosa.
Connecticut cans Medicaid managed care in favor of the old fee-for-service model, as other states experiment with managed care. Those states ought to look at how much money we lost to the private insurers running managed care.
Hundreds of patients linger in New York City hospitals because they have nowhere to go. They are illegal immigrants or don't have insurance or any type of support system. Of course, hospital care is the most expensive option, but Medicaid won't cover their stay in a nursing home, so hospital care is their only option.
And that's it for today. Have a great start to 2012! Jennifer
Expect 2012 to be a year in which we talk alot about Medicare. With the boomers joining the ranks, we can't afford to sustain what we have, some argue. But others says we must hold the line firm.
The Government Accountability Office found that the Department of Justice is not doing a good job policing standardized testing companies to ensure that disabled test-takers have the accommodations they need.
Some states are working on getting their Exchange up and running in time to sell insurance effective January 2014. But in states that are refusing to comply with health reform, there should be a federal fall-back Exchange -- but will it be ready?
The Pre-existing Condition Insurance Plan continues to be a great option for people who've gone without insurance for 6 months. It's grown to about 6000 in California alone.
10 provisions of health reform take effect in 2012. Not the really critical ones, but they may help affordability and care coordination.
California Blue Shield settled a lawsuit that requires them to pay $2 million for dropping people when they found out they were sick. A similar suit against Anthem still is pending.
When nurses catch compassion fatigue, watch out. If you've ever been in the hospital, you know that the key is a pleasant, caring nurse. But could you keep that up every day?
Smokers are paying more for health insurance. An incentive to stop smoking? We hope so.
There's a shortage of ADHD drugs. Hundreds of people are complaining to the FDA every day. Ritalin and Adderall are affected. The Drug Enforcement Agency set manufacturing quotas on these drugs to try to avoid street use, but the result is that kids don't have their meds. Along the same lines, although not mentioned in the news, Salix Phamaceuticals has stopped manufacturing brand name Colazal. They have a new, equivalent med coming out shortly that they thought would be FDA approved by now. But the FDA has held up the new drug approval, and this is leaving Crohn's and colitis patients without brand name meds.
Insured Americans share healthier habits than the uninsured. I suspect that's largely because insured Americans as a general rule are employed and/or financially sound.
Two new books are good for patients. Confessions of a Surgeon tells most of us who've been through surgery what we already know -- surgeons just do surgery, and nothing else. But the Patient's Checklist sounds really interesting -- a way to make sure you are getting appropriate and safe care. I was contacted last week to see if I'd read an advance copy and review it for you, so I'm waiting for it to arrive so I can get into it. And here's an interesting piece by a surgeon that makes me never want to go near an OR again.
New thoughts on treating anorexia nervosa.
Connecticut cans Medicaid managed care in favor of the old fee-for-service model, as other states experiment with managed care. Those states ought to look at how much money we lost to the private insurers running managed care.
Hundreds of patients linger in New York City hospitals because they have nowhere to go. They are illegal immigrants or don't have insurance or any type of support system. Of course, hospital care is the most expensive option, but Medicaid won't cover their stay in a nursing home, so hospital care is their only option.
And that's it for today. Have a great start to 2012! Jennifer
Friday, December 30, 2011
Happy New Year's -- If We Make It So
I feel like I'm supposed to have something smart to say -- something about bygones and starting anew. I'm not sure I have anything really big to say, but as always, I'll share my thoughts and see what comes of it.
It's been a huge year for Advocacy for Patients. Nicole Netkin-Collins started in March as our first full-time staff attorney. We couldn't be happier to have her. It means we can serve more people and -- if I can get my priorities straight -- it should mean that I don't work 15 hour days all the time. Me and my priorities, putting work before all else? Well, that's going to require more work, on the agenda for 2012.
We also moved out of my house into real offices. I love our new offices, really. They fit us so well. Everything worked out just great. We're comfortable there. We're home. Every day, I walk in and smile knowing I created a space for us that really suits us to perfection.
We had a lot of good wins, and some pretty big losses, as well, as we continue to battle with insurance companies. We're pretty successful at insurance appeals for things that are well supported in the medical literature. For example, Nicole won a huge appeal to get IV lidocaine for a patient with complex regional pain syndrome, which was very exciting. But since we take the hardest cases, where the medical records don't firmly support a diagnosis or the medical literature doesn't support the treatment in question, it's an uphill battle. We win some, but the ones we lose are heart-breaking, not only for the patients, but for us.
We've had more employment cases this year than ever before. We suspect that, in this economy, when employers are laying people off, they like to start with people who take a lot of FMLA leave or need reasonable accommodations. We also continue to have way more school cases than is justifiable -- schools still threatening to send sick kids to truancy court, stupid things like that.
We did a tremendous amount of policy work this year. We spent a lot of time working with national consumer groups on health reform implementation. Our role is the biggest when it comes to the new appeals rules because we have such broad experience in filing insurance appeals in many different states. We've also weighed in on the Exchanges, and have been working hard to improve the Exchange set up here in Connecticut. We also filed an amicus ("friend of the court") brief in the Supreme Court in the health reform case.
In addition, we published our first paper on our chronic illness survey.
And with all of that, we even broke even on the year -- a tremendous accomplishment in a year of such growth.
2012 will be a challenge. It will be the first full year in which we have to pay for all of that growth. We're off to a decent start, but in 2012, I have to work on my fundraising skills, for sure. Also in 2012, we are serving on the advisory committee for the Connecticut Health Survey, and the consumer advisory committee for FAIR Health, which you really should check out if you haven't already. Finally, it is possible for consumers to get information on "usual and customary" rates, which allow us to fight when an insurer wants to pay a miniscule portion of an out-of-network service.
Perhaps the most important thing that will happen in our little corner of the world is the Supreme Court's decision on the health reform case. Briefs are due in the next month or so (ours was the first one to be filed), and oral argument is at the end of March. We should have a decision in June. If the law remains intact, we will have coverage of people with pre-existing conditions, along with subsidies to make insurance more affordable, in 2014. If the law is struck down -- or perhaps even if only the individual mandate is struck down -- we may lose the most important advancement the law has ever made for people with chronic illnesses.
And then there will be the Presidential election. While we stay out of electoral politics, we strongly support health reform. Even if the Supreme Court upholds the law, an anti-reform President could take away coverage of pre-existing conditions before 2014 rolls around -- a huge loss for people with chronic illnesses.
But most of all, 2012 will mean another 1500+ clients who battle chronic illness in one way or another. Some of them will bring us joy; some will bring us loss and pain. But we continue to feel privileged to do work that matters.
William James said life is worth living because we are free to make it so, from the moral point of view. In other words, as long as we can be a positive influence in the world and on each other, we can give our lives meaning. Nicole, Echo and I do that as best we can every single day, with every email and phone call we get. But we can do better. We all can. Don't shy away from the homeless; know that it could just as easily be you. Don't judge those less fortunate; it's not their fault they got sick, which for too many people leads to unemployment, financial ruin, foreclosure, isolation.
Make it your New Year's resolution to warm your heart to those in need. Small government is all well and good in theory; but people need care, shelter, warmth, and we need to continue to press our elected officials to help make sure our basic needs are met -- for all of us. And if you're reading this thinking that if you can make it, why can't everyone else? It's because not everyone has the capacity for reinventing themselves; not everybody can bounce back; not everybody has friends and family for support. We humans have different skill sets; not everybody has the ability to scrape together a life that has gone to ashes. Instead of thinking that others should tough it out like you do, try imagining doing that without your skills, family, friends, energy. Feel compassion for those less fortunate. Make it your New Year's resolution to develop that warmth in your heart if you don't already have it.
I've said it before and I'll say it again: If everybody did whatever they can do, the world would be a far better place. So join with us and, in 2012, do whatever small deeds you can to make the world a better place, or at least not make it worse! You'll find that doing good is far more of a gift to yourself than it is to others.
Happy New Year. Jennifer
It's been a huge year for Advocacy for Patients. Nicole Netkin-Collins started in March as our first full-time staff attorney. We couldn't be happier to have her. It means we can serve more people and -- if I can get my priorities straight -- it should mean that I don't work 15 hour days all the time. Me and my priorities, putting work before all else? Well, that's going to require more work, on the agenda for 2012.
We also moved out of my house into real offices. I love our new offices, really. They fit us so well. Everything worked out just great. We're comfortable there. We're home. Every day, I walk in and smile knowing I created a space for us that really suits us to perfection.
We had a lot of good wins, and some pretty big losses, as well, as we continue to battle with insurance companies. We're pretty successful at insurance appeals for things that are well supported in the medical literature. For example, Nicole won a huge appeal to get IV lidocaine for a patient with complex regional pain syndrome, which was very exciting. But since we take the hardest cases, where the medical records don't firmly support a diagnosis or the medical literature doesn't support the treatment in question, it's an uphill battle. We win some, but the ones we lose are heart-breaking, not only for the patients, but for us.
We've had more employment cases this year than ever before. We suspect that, in this economy, when employers are laying people off, they like to start with people who take a lot of FMLA leave or need reasonable accommodations. We also continue to have way more school cases than is justifiable -- schools still threatening to send sick kids to truancy court, stupid things like that.
We did a tremendous amount of policy work this year. We spent a lot of time working with national consumer groups on health reform implementation. Our role is the biggest when it comes to the new appeals rules because we have such broad experience in filing insurance appeals in many different states. We've also weighed in on the Exchanges, and have been working hard to improve the Exchange set up here in Connecticut. We also filed an amicus ("friend of the court") brief in the Supreme Court in the health reform case.
In addition, we published our first paper on our chronic illness survey.
And with all of that, we even broke even on the year -- a tremendous accomplishment in a year of such growth.
2012 will be a challenge. It will be the first full year in which we have to pay for all of that growth. We're off to a decent start, but in 2012, I have to work on my fundraising skills, for sure. Also in 2012, we are serving on the advisory committee for the Connecticut Health Survey, and the consumer advisory committee for FAIR Health, which you really should check out if you haven't already. Finally, it is possible for consumers to get information on "usual and customary" rates, which allow us to fight when an insurer wants to pay a miniscule portion of an out-of-network service.
Perhaps the most important thing that will happen in our little corner of the world is the Supreme Court's decision on the health reform case. Briefs are due in the next month or so (ours was the first one to be filed), and oral argument is at the end of March. We should have a decision in June. If the law remains intact, we will have coverage of people with pre-existing conditions, along with subsidies to make insurance more affordable, in 2014. If the law is struck down -- or perhaps even if only the individual mandate is struck down -- we may lose the most important advancement the law has ever made for people with chronic illnesses.
And then there will be the Presidential election. While we stay out of electoral politics, we strongly support health reform. Even if the Supreme Court upholds the law, an anti-reform President could take away coverage of pre-existing conditions before 2014 rolls around -- a huge loss for people with chronic illnesses.
But most of all, 2012 will mean another 1500+ clients who battle chronic illness in one way or another. Some of them will bring us joy; some will bring us loss and pain. But we continue to feel privileged to do work that matters.
William James said life is worth living because we are free to make it so, from the moral point of view. In other words, as long as we can be a positive influence in the world and on each other, we can give our lives meaning. Nicole, Echo and I do that as best we can every single day, with every email and phone call we get. But we can do better. We all can. Don't shy away from the homeless; know that it could just as easily be you. Don't judge those less fortunate; it's not their fault they got sick, which for too many people leads to unemployment, financial ruin, foreclosure, isolation.
Make it your New Year's resolution to warm your heart to those in need. Small government is all well and good in theory; but people need care, shelter, warmth, and we need to continue to press our elected officials to help make sure our basic needs are met -- for all of us. And if you're reading this thinking that if you can make it, why can't everyone else? It's because not everyone has the capacity for reinventing themselves; not everybody can bounce back; not everybody has friends and family for support. We humans have different skill sets; not everybody has the ability to scrape together a life that has gone to ashes. Instead of thinking that others should tough it out like you do, try imagining doing that without your skills, family, friends, energy. Feel compassion for those less fortunate. Make it your New Year's resolution to develop that warmth in your heart if you don't already have it.
I've said it before and I'll say it again: If everybody did whatever they can do, the world would be a far better place. So join with us and, in 2012, do whatever small deeds you can to make the world a better place, or at least not make it worse! You'll find that doing good is far more of a gift to yourself than it is to others.
Happy New Year. Jennifer
Wednesday, December 28, 2011
Hump Day Headlines
And it's already Wednesday -- YAY! And it's a very light news day. Hey -- is everybody but me on vacation? What am I doing here at 6 am? Oh, well. Might as well get to it.
Five pieces of health reform took effect in 2011. (1) a huge crackdown on fraud, which has brought in billions of dollars; (2) kids under age 26 can stay on their parents' policy; (3) a 50% reduction in prescription drug costs for seniors; (4) preventive care is free; and (5) the Pre-existing Condition Insurance Plan, an option for people who can't get insurance on the private market. Although we wait until 2014 for the really big stuff, these accomplishments are not for nothing!
State governments, with federal funds, have added 1.2 million children to health care coverage of some kind since 2008. It's mostly CHIP, the Children's Health Insurance Plan, which is funded by the feds and the states.
Weight loss programs will be covered by Medicare starting in January, so get ready for a flood of marketing to doctors and patients.
All metal hip replacements are failing at an alarming rate and expected to cost all of us billions of dollars. It's not too often that a medical device failure makes the top of the front page of the NY Times, so you can bet this is for real.
A doctor's dilemma -- confidentiality unless you're going to hurt yourself or someone else, in which case confidentiality is out the window.
An operator of group homes for the developmentally disabled in NY took a TON of money from the state while declaring bankrutpcy, not paying taxes.
That's it -- that's all I can find. Have a great day! Jennifer
Five pieces of health reform took effect in 2011. (1) a huge crackdown on fraud, which has brought in billions of dollars; (2) kids under age 26 can stay on their parents' policy; (3) a 50% reduction in prescription drug costs for seniors; (4) preventive care is free; and (5) the Pre-existing Condition Insurance Plan, an option for people who can't get insurance on the private market. Although we wait until 2014 for the really big stuff, these accomplishments are not for nothing!
State governments, with federal funds, have added 1.2 million children to health care coverage of some kind since 2008. It's mostly CHIP, the Children's Health Insurance Plan, which is funded by the feds and the states.
Weight loss programs will be covered by Medicare starting in January, so get ready for a flood of marketing to doctors and patients.
All metal hip replacements are failing at an alarming rate and expected to cost all of us billions of dollars. It's not too often that a medical device failure makes the top of the front page of the NY Times, so you can bet this is for real.
A doctor's dilemma -- confidentiality unless you're going to hurt yourself or someone else, in which case confidentiality is out the window.
An operator of group homes for the developmentally disabled in NY took a TON of money from the state while declaring bankrutpcy, not paying taxes.
That's it -- that's all I can find. Have a great day! Jennifer
Tuesday, December 27, 2011
Tuesday Tidbits
Well, I'm here, but at least it's a short week. And here's the news:
I have to start with this. Smiling may improve your health. For real. It reduces the risk of stroke. You will make better wellness choices. I don't know if I believe this. But I do believe that smiling helps you feel better. And it's free. So why not give it a try.
One in five Americans is juggling medical bills. And many of them have insurance. I hope 2012 begins to address this.
The economy hasn't been as bad for our members of Congress as it has been for the rest of us. The earnings gap between us and them has grown. And now, with only two months to come up with a deal on the payroll tax, unemployment and the Medicare reimbursement cut, things on the Hill are as acrimonious as ever.
The GOP has been chanting "repeal and replace" about the health reform law since it was passed -- but there's still no plan for a replacement. Because there's no expert anywhere who believes we can fix the problem without covering the uninsured, and there's no way to do that without mandating coverage of pre-existing conditions, and there's no way to do that without an individual mandate and subsidies. Shout repeal all you want, but understand that, if you do that, you leave 50 million people without insurance -- and rising.
And here's a profile of the lawyer who will be arguing against the health law's constitutionality in the Supreme Court.
Last week, we heard that an experiment on flu could have been dangerous by making the flu airborne. Well, it's still controversial. The claim is that it teaches terrorists to do something most of them don't know how to do.
A new, better pain med has some worried that it will increase abuse. I'd like to know why it isn't good to get people out of major pain. If there's abuse, stop the doctors causing it, but stop blaming it on patients who are in pain.
New hope for patients with MS? Wouldn't that be wonderful?!
Hospitals -- usually quick to use new technology -- have not started using iPads and other tablets.
Are house calls making a come-back? I would LOVE this.
Gastric banding has complications. Be an informed patient.
The older you are when you gain weight, the more of the weight is fat. Thanks. I needed to know that.
And there you go. Have a great day. Jennifer
I have to start with this. Smiling may improve your health. For real. It reduces the risk of stroke. You will make better wellness choices. I don't know if I believe this. But I do believe that smiling helps you feel better. And it's free. So why not give it a try.
One in five Americans is juggling medical bills. And many of them have insurance. I hope 2012 begins to address this.
The economy hasn't been as bad for our members of Congress as it has been for the rest of us. The earnings gap between us and them has grown. And now, with only two months to come up with a deal on the payroll tax, unemployment and the Medicare reimbursement cut, things on the Hill are as acrimonious as ever.
The GOP has been chanting "repeal and replace" about the health reform law since it was passed -- but there's still no plan for a replacement. Because there's no expert anywhere who believes we can fix the problem without covering the uninsured, and there's no way to do that without mandating coverage of pre-existing conditions, and there's no way to do that without an individual mandate and subsidies. Shout repeal all you want, but understand that, if you do that, you leave 50 million people without insurance -- and rising.
And here's a profile of the lawyer who will be arguing against the health law's constitutionality in the Supreme Court.
Last week, we heard that an experiment on flu could have been dangerous by making the flu airborne. Well, it's still controversial. The claim is that it teaches terrorists to do something most of them don't know how to do.
A new, better pain med has some worried that it will increase abuse. I'd like to know why it isn't good to get people out of major pain. If there's abuse, stop the doctors causing it, but stop blaming it on patients who are in pain.
New hope for patients with MS? Wouldn't that be wonderful?!
Hospitals -- usually quick to use new technology -- have not started using iPads and other tablets.
Are house calls making a come-back? I would LOVE this.
Gastric banding has complications. Be an informed patient.
The older you are when you gain weight, the more of the weight is fat. Thanks. I needed to know that.
And there you go. Have a great day. Jennifer
Friday, December 23, 2011
Essential Health Benefits Guidance
As you know if you read this blog, rather than establishing an essential health benefits (EHB) package, as the health reform law directs it to do, the Department of Health and Human Services has proposed to permit states to establish the EHB by choosing a "benchmark" plan. That means no national standards, no uniformity, and lousy coverage in states that are not consumer friendly when it comes to health insurance.
We have submitted our comments to the Department. You may read our comments here.
Jennifer
We have submitted our comments to the Department. You may read our comments here.
Jennifer
Holiday From Chronic Illness
You can't help but run into talk of family gatherings, travel, opening presents, eating -- living in the holiday season is vital, active. It's no wonder some of us with chronic illnesses feel left out. After all, we can't eat normally. We are in pain. The New Year doesn't bring us a clean slate. And all we want to do is sleep. We are isolated and alone.
But I don't think it has to be that way. I challenge you to celebrate the holidays in your own ways. Naps are great, and everybody naps on the holidays, so don't feel left out; enjoy a warm winter's nap. Can't go out for the holidays? Bring some cheer in. For me, it's as small and simple as putting Emily's holiday collar on her -- red velvet with rhinestones for the girly cat. It reminds me that it's a special time of year and brightens up my mood immediately. Can't eat the big, fancy meals? Treat yourself to one of your favorites -- a cupcake, a bowl of homemade soup -- whatever feels special to you. There's wonderful holiday music that always cheers me up. I'm Jewish, but I'm a sucker for a good Christmas carol.
And if you really can't find anything to rejoice about, think about how much worse it could be -- think about those who lack a home or a bed or hot food or anybody who cares about them. If you're able, volunteer at a soup kitchen -- that will make you feel very lucky. If you're not able, pick up the phone and call someone you know who's also sick and alone; two of us together is better than two of us apart.
I will look back on 2011 as the year I really learned the value of positive thinking. I've always known that coping strategy is the key to living with chronic illness. The glass half full. All I have rather than all I'm missing. But I never really got it until this year.
My friend Ashley O'Connor always says "it will work out. It always does." This was the year I decided to believe her. I moved Advocacy for Patients into new offices with no clue how I was going to handle our increased expenses. But we've been here for four months and we will still break even on the year. I have no idea how it happened, but it did. It always does.
So when people ask how I am these days, I try to remind myself to say "great," even when that's rarely the case. Strangely, I have found that, by just saying that, it sort of comes true -- I feel happier when I act happier. Laugh. Sing. Smile. You don't need anybody's help to do those things. You don't even need a reason. Just do it and see if it changes how you feel. I bet it does.
Life's tough, for sure. Even if I sit or lie really still, I'm in pain. I'm so tired I could cry -- not sleepy tired, but bone tired. I lost a dear friend this week. I got bad test results. I'm not going to have any time off over the holidays. We can compare lists of things we have to be miserable about.
But I also have a cat who loves me. I have a lovely home that's warm and clean, even if it does need some sprucing up. I have a great office. I have work I love. And I have the great privilege of being able to touch a life here and there. There is no greater reason to celebrate.
So don't wait for good fortune to find you. Make it. Hang a garland. Phone a friend who's alone. Eat a cookie. Write a letter. Smile. You may have to pretend at first, but you'll be surprised at how fast it becomes genuine.
Because in our hearts, we aren't sick. In our hearts, we are alive and free and loving. In our hearts, we can take a holiday from chronic illness. I hope you will give it a try.
Ashley's right. It will work out. It always does. Some how. Believe. Jennifer
But I don't think it has to be that way. I challenge you to celebrate the holidays in your own ways. Naps are great, and everybody naps on the holidays, so don't feel left out; enjoy a warm winter's nap. Can't go out for the holidays? Bring some cheer in. For me, it's as small and simple as putting Emily's holiday collar on her -- red velvet with rhinestones for the girly cat. It reminds me that it's a special time of year and brightens up my mood immediately. Can't eat the big, fancy meals? Treat yourself to one of your favorites -- a cupcake, a bowl of homemade soup -- whatever feels special to you. There's wonderful holiday music that always cheers me up. I'm Jewish, but I'm a sucker for a good Christmas carol.
And if you really can't find anything to rejoice about, think about how much worse it could be -- think about those who lack a home or a bed or hot food or anybody who cares about them. If you're able, volunteer at a soup kitchen -- that will make you feel very lucky. If you're not able, pick up the phone and call someone you know who's also sick and alone; two of us together is better than two of us apart.
I will look back on 2011 as the year I really learned the value of positive thinking. I've always known that coping strategy is the key to living with chronic illness. The glass half full. All I have rather than all I'm missing. But I never really got it until this year.
My friend Ashley O'Connor always says "it will work out. It always does." This was the year I decided to believe her. I moved Advocacy for Patients into new offices with no clue how I was going to handle our increased expenses. But we've been here for four months and we will still break even on the year. I have no idea how it happened, but it did. It always does.
So when people ask how I am these days, I try to remind myself to say "great," even when that's rarely the case. Strangely, I have found that, by just saying that, it sort of comes true -- I feel happier when I act happier. Laugh. Sing. Smile. You don't need anybody's help to do those things. You don't even need a reason. Just do it and see if it changes how you feel. I bet it does.
Life's tough, for sure. Even if I sit or lie really still, I'm in pain. I'm so tired I could cry -- not sleepy tired, but bone tired. I lost a dear friend this week. I got bad test results. I'm not going to have any time off over the holidays. We can compare lists of things we have to be miserable about.
But I also have a cat who loves me. I have a lovely home that's warm and clean, even if it does need some sprucing up. I have a great office. I have work I love. And I have the great privilege of being able to touch a life here and there. There is no greater reason to celebrate.
So don't wait for good fortune to find you. Make it. Hang a garland. Phone a friend who's alone. Eat a cookie. Write a letter. Smile. You may have to pretend at first, but you'll be surprised at how fast it becomes genuine.
Because in our hearts, we aren't sick. In our hearts, we are alive and free and loving. In our hearts, we can take a holiday from chronic illness. I hope you will give it a try.
Ashley's right. It will work out. It always does. Some how. Believe. Jennifer
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