Friday, January 29, 2010
What the President said over and over is that the Republicans have to work with him. They can't just oppose everything he proposes because it was his idea. In other words, he really confronted my claim in my post about the State of the Union address that he was naive about bipartisanship. He made it clear that he's not naive, that it's something he strives for, but it's something that can never happen unless the Republicans decide to give up some ground.
There were all kinds of Twitter feeds in the background on Huffington Post, where the session was streamed live. Nobody could think of any other occasion in which a sitting President has taken questions on live television from members of the opposing party. And everyone agreed that it should happen more often.
i can't help wondering, after that incredibly impressive performance, whether the Republicans will invite President Obama to do this again in the future. Jennifer
P.S. - you can read about it here or watch it tonight at 8 pm on C-Span.
Thursday, January 28, 2010
Of course, I'm disappointed that we went a half-hour without hearing about health care, although I didn't hate what the President said when he finally got there. But still, I'm saddened, not only by the fact that he has backed off health care's importance to the American people and our economy, but by the fact that the entire speech seemed to carry with it the naive optimism that has undermined President Obama's progress for the past year. I say naive because he still seems to believe that bipartisanship is possible with a far-right Republican party that represents a very small part of our society, and that has, as its primary goal, the defeat of anything that might look like a victory to President Obama. This naivete was demonstrated most clearly when the President actually broke from his script to express surprise that the Republicans did not applaud when he said he favored some tax cuts. Why is he still surprised?
I don't want to turn this blog into a partisan political comment and I rarely talk here about Republicans and Democrats for that reason. But it's important to keep in mind that the Republicans in Congress are pretty far to the right of those members of the American public who identify themselves as Republicans. While the Democrats in Congress span the spectrum, from far left to Blue Dog moderate/right, the Republicans in Congress are not representative of Republicans generally; they are right-wing idealogues who have hijacked the party, causing the ranks of Independents to swell. And so although there may be the possibility of bipartisanship out there in the heartland, there is no interest in bipartisanship on the right side of the aisle in Congress. President Obama's refusal to accept this reality and persuade Democrats -- who do, in fact, hold a significant majority in Congress -- to just run their agenda is very distressing. It makes me feel as though he is standing in wet cement that is quickly drying.
It's not that I didn't agree with a lot of what the President said. It's that I disagree with who he thinks his audience is. He's trying to persuade people who have pledged to make health care his Waterloo, people who think the Tea Party movement is centrist and populist rather than just a fairly small handful of noisy nuts. In the process, he's failing to hold the Democratic majority together around a set of principles upon which he was elected -- and yes, health care is at the very top of that list.
The reason we don't have health reform is not the Massachusetts special election; the reason we don't have health reform is that the White House allowed Senator Baucus to dither all summer to get Olympia Snowe's one and only Republican vote on the Senate Finance Committee -- a vote that was not sustained when the Senate as a whole voted on the bill. The reason we don't have health reform is that this vision of bipartisanship is so naive and wrong as to completely undermine the President's entire first year.
I wanted to hear President Obama say "screw you who stand in the way of doing the right thing. We WILL have health care, even if it takes using reconciliation, and passing the bill with 51 Senate votes." I wanted to hear President Obama say, as he used to, that NOT passing health reform simply is not an option. I wanted him to argue, as he has in the past, that we cannot fix this economy, create jobs, and put America on equal footing with the rest of the world when we are spending ridiculous amounts of money on health insurance that doesn't cover the care we need, that refuses to cover people who actually get sick, that raises premiums 25% per year. I wanted him to stand with us -- we who have chronic illnesses -- and reflect an understanding of what we live with every single day of our lives.
I didn't hear that. And so, I am disappointed. My heart did not soar as it did when candidate Obama said YES WE CAN!!! Instead, I heard President Obama say, well, maybe we can do a little something here and there. And that simply is not good enough. Jennifer
Tuesday, January 26, 2010
First, I heard from a family living in their car -- no home, no money, no job, no health care.
Second, I heard from a lovely man -- a senior citizen -- who lost his home to foreclosure. he thought he had prepared for retirement, but sadly, he had not prepared for illness, and that broke him.
Third, I heard from a lung transplant recipient who lost her health insurance and cannot afford anti-rejection medications. I think I was able to help her -- I sure hope so.
Now, tell me ONE GOOD REASON we should not have health insurance reform in America. I challenge you. Don't we want to be better than this? Jennifer
Monday, January 25, 2010
Friday, January 22, 2010
My first reaction was to say let's pass incremental pieces, let's do what we can, and keep working on a broader solution in small steps. So I wrote a letter posted below to the President suggesting just that.
I WAS WRONG. The fight for real reform is not over. We can still get it done.
If the House passed the Senate bill AND a second bill incorporating the changes to the Senate bill that were negotiated by leadership -- almost all of which affect budget issues -- the Senate could take up the second House bill under reconciliation -- a procedure that requires only 51 votes rather than 60. Even the abortion issue is about funding, not about abortion. WE CAN STILL GET THIS DONE.
Now is not the time to give up. We musn't retreat. We've worked way too hard to just start over. And the cost of doing nothing is unacceptable -- people with pre-existing conditions who can't get insurance, people with chronic illnesses who lose insurance to lifetime or annual benefit limits, people whose insurance premiums are higher than their mortgage payments.
The fight is not over. Senator Kennedy was right. Hope is alive; the cause endures. Stay strong. Jennifer
Wednesday, January 20, 2010
The White House
Dear President Obama:
I've lost count of the number of times I've written you, Melody Barnes, Kareem Dale, and Nancy DeParle without receiving a single response. You aren't listening and it's costing you.
I'm a devastatingly sick lawyer who runs a small nonprofit called Advocacy for Patients with Chronic Illness. You want stories about why we need health insurance reform? I have so many that Senator Dodd actually told one of them on the floor of the Senate. You need a new approach. Please, please listen.
Eliminate the CLASS Act. I don't know how much money it would save, but it would be a bundle and we can afford to cut it loose.
Write a short, uncomplicated bill -- no pre-existing condition exclusions, no lifetime caps, no annual caps, no premium rating based on gender or health history. Have a national high risk pool for people with pre-existing conditions until the new rules kick in. Cap the premiums and out-of-pocket expenses for the high risk pool on a sliding scale based on income. That would be enough to give people with pre-existing conditions an option almost immediately.
Create an Exchange (at this point, I don’t care if it’s state or national) solely so people can shop for insurance and see what their options are. No required benefit package for now. No mandates for now. Just a place where people can shop and see what their options are.
I understand -- the insurance companies won't go along with this without a mandate. But you can't get Republican votes for a mandate, and you can't have a mandate without subsidies, and you can't get Republican votes for subsidies. So shove it down the insurance companies' throats. Nobody will care about them if Senators Snowe and Collins, and possibly others, vote for this modest plan. Nobody will be able to lie about a government take-over because it will be modest. It will just eliminate unfairness and create a marketplace with transparency.
If you sat where I sit and took the calls all day that I take, you would know that this smaller set of reforms would make a real difference. Is it enough? No, we should have single payer universal health care! But can we get this? I believe you would have enough Republican votes to pass a simple bill that did nothing but reform the insurance industry and make it easier for consumers to see their options.
Then soon, but separately, plug the doughnut hole in Medicare Part D so disabled and elderly people with Medicare can afford their medication.
Then maybe a little later, you can come back to an individual mandate and subsidies.
Believe me -- I am grieving this loss deeply. But since you weren't in Massachusetts when you should have been, and the Democratic Party completely dropped the ball, you now have to pass what you can. If Barney Frank is saying we have to defer to Senator-elect Brown, then that's the answer -- no more progressive member of Congress can be found. We have to scale back, and really, it’s okay if you would just focus on the things that are most critical.
So eat crow. Let go of the big stuff. Pass insurance reform. Keep it simple. Let the Republicans say what they will -- you would get Senators Snowe and Collins and maybe others if you just did insurance reform.
I'm begging you, please. I can't keep taking phone calls every day from people who've lost their jobs and their insurance and their houses and I have nothing for them. I get calls from people living in cars. I know a larger response is required. But for whatever reason, the opportunity is now lost and you have to do what you can. Please, Mr. President. Please hear me. I speak for many thousands of people when I say that if you did nothing other than insurance reforms, an Exchange, a national high risk pool with sliding scale premiums, and plugging up the doughnut hole in Medicare, you could declare victory and we would stand with you.
Please, please hear me. I am desperate. My clients are desperate. Please help us.
Jennifer C. Jaff
I am literally in tears as I write this. Senator Kennedy said over and over that hope endures and the dream never dies. But now his Senate seat will be used to kill the dreams of 30 million people who would have had insurance if health reform were passed. And I still will have nothing to offer the people who call me desperate, looking for answers. The stock prices of health insurance companies skyrocketed yesterday on the belief that health reform would die, and it looks like they were right.
How do we keep this dream alive? If the voters of Massachusetts would not do it out of respect for you and your legacy -- your life's most important work, you've said -- then how can we convince enough members of Congress to do it for them?
Right now, I am grieving. Hopefully, somebody will get real and do what they have to do -- the House can pass the Senate bill and it will be done. The legislation could be pushed through before Brown is sworn in.
I'll tell you what. If health reform dies, that is the end of President Obama's presidency. If he can't get this through, he has no chance with financial regulation, climate change, education reform. All he will have is the ability to cut taxes because that is all the Republicans will let him do.
So not only do we lose health care, but we lose what might have been a transformative presidency. We lose the dream of real change. I am in mourning. Jennifer
Tuesday, January 19, 2010
You do understand, don't you, that there will be no second chances, right? If we don't get whatever we can get this time around, we will get nothing. There will never again be 60 votes in the Senate for reform -- at least not in the foreseeable future.
As I said in my post yesterday, I wish those who are skeptical about reform would answer the phones here for a couple of days. There is deep human tragedy abounding. In America. The wealthiest country in the world. The reform bill Congress has negotiated falls way short of an ideal, but people with pre-existing conditions will get insurance. People who are lower middle-class will get subsidies. It's far from perfect, but it's better than nothing, and nothing is the only alternative.
Speaking of tragedy, I've been hemming and hawing about what to say about Haiti. I thought it was really distasteful to get emails from other American nonprofits last week, right after the earthquake. I also know that we and other American nonprofits are suffering from the economy, so it's hard to tell people to give elsewhere. But when push comes to shove, I have to tell you: Give elsewhere, to Haiti.
There are many ways to give. My personal choice is Partners in Health, which provides health care supplies and assistance. Network for Good has a group of stores where your purchases will be used to help Haiti earthquake victims. Oxfam is an international aid organization that is focusing on Haiti. There's also Doctors without Borders and, of course, the Red Cross.
Keep in mind that, if you give by credit card, the charity will lose part of your donation to a transaction fee, so sending checks is an option that avoids this.
There is tragedy in the United States, but not on the scale of what we are seeing in Haiti. I don't have a lot of money to give, just like the rest of you. But giving anything is better than giving nothing. In a tragedy of this proportion, no amount is too small. Send a child a bottle or water or some food or some medical supplies or assistance.
But please do something. Jennifer
Monday, January 18, 2010
Martin Luther king -- who knew something about inequality and injustice -- knew that allowing people who are sick to go untreated and uncared for is about as callous as America can be. And if you think things have changed a lot since his death, you're only right if you think they've changed for the worst.
It you haven't read our book, It's Too Hard To Be Sick in America, give it a glance and see just how tragic life is for people who did nothing to deserve it other than to get sick. Answering the phones here at Advocacy for Patients gets harder and harder because what people need -- money -- is the one thing we don't have to give. People are telling me they lost their job and their insurance and their home, and some are living in cars. This isn't a cute rags-to-riches story told by Jewel about her childhood. These are real stories happening today. I can't imagine having to live in the street. Doing so without ready access to a bathroom is truly unimaginable. And yet, there but for the grace of whomever go I.
Dr. King had it right. There is nothing more shocking or inhumane than leaving children to die because they can't get health care; leaving a woman in Tennessee to be discharged from the hospital despite the fact that she can't keep down any food because she doesn't have insurance; leaving a cancer patient untreated because the only treatment that hasn't been tried is FDA approved for one cancer but not for the one that is killing her.
Last week, I gave an interview to a reporter who asked a lot about how I feel about what I do. "It sounds like insurers are getting away with murder." Yes, literally. And I suspect that will get worse with so-called reform; health insurers will make up for less in premiums by denying coverage more often.
My heart breaks over the calls I get from people who simply have no way to pay their rent. I can find them a free clinic, although free clinics typically staff only primary physicians rather than specialists, and they often don't cover labs and scopes and other diagnostics. I can find them free prescription drugs. I can even find free ostomy supplies and tube feeding supplies. But I can't find money to pay the rent. It simply isn't there.
I deeply support the work being done in Haiti. I've donated and I hope all of you have, as well. But when that crisis passes -- if it ever does -- I think we should be taking up a collection to pay for health care in America for people who have no options. Need there be photos of people lying dead in the streets of Iowa before Hollywood holds a telethon?
This is an emergency. Pure and simple. It's tragic. People are dying in America every day simply because they don't have access to health care. But because it is invisible to most of us, we do nothing about it.
So on MLK Day, I think of the "most shocking and inhumane" and know that, as long as this tragedy happens in private, Americans won't know and, thus, won't help. We have to find a way to show the elite of America -- Hollywood and Wall Street -- that there is desperate need here, as well. Jennifer
Monday, January 11, 2010
First, the House wants to pull the health insurance industry's antitrust exemption. Now, I'd like to know why they ever had one in the first place! I'm no antitrust expert, but as I understand it, the reasons health insurers are allowed to lobby Congress through a single lobbyist, and compare costs, and share data on "reasonable" expenses for out-of-network coverage -- lots of things -- is because they are not subject to antitrust laws. Antitrust laws are designed to prevent individual marketplace participants from ganging up against the little guy. So, for example, members of an industry can't fix prices in a way that benefits them and hurts consumers. In other words, antitrust laws are designed to protect and promote competition. These laws are designed to prevent companies from forming alliances that become so large that they are monopolies, or from other anti-competitive, unfair behavior that harms consumers.
You can read more about antitrust laws here. However, it seems to me to be pretty clear that health insurers are not an industry that needs to be protected from the antitrust laws in order for things to be fair, i.e., in order for insurers to have fair bargaining power both against each other and, more importantly in my mind, as against consumers.
There are a number of pretty famous antitrust exemptions. For example, baseball teams are exempt from the antitrust laws, allowing them to bargain collectively as one entity. Unions are exempt from antitrust laws so as to provide workers with equal bargaining power with huge captains of industry. But insurance companies? Since they have all the bargaining power, since their premiums are ridiculously high, why on earth do they need special treatment under the law? I've yet to hear or read a single explanation for exempting health insurers from the antitrust laws that makes any sense at all. If we are not going to have a public option that could compete with health insurers, let's at least strip them of their antitrust exemption so they have to compete among themselves!
Second, medical loss ratio. The medical loss ratio is the amount of every premium dollar that goes to paying for medical care. For example, if you had a 95% medical loss ratio, that would mean that your insurer was spending 95% of the premium you paid on health care and only 5% on administrative costs and profits. On the other hand, if the medical loss ratio is 70%, it means that the insurer is spending 30% of the premium dollars it collects on administrative costs and profits. In the absence of a public option, progressives in the House are fighting for an 85% medical loss ratio.
These two provisions are excellent proxies for a public option. Those of us who favor a public option do so because we believe that there is not enough competition in the insurance industry. A public option would have been nonprofit, so the medical loss ratio would have been higher, and premiums, therefore, would have been lower. This lower cost public option would have provided an incentive for insurance companies to reduce their premiums so they could have remained competitive. Removing the antitrust exemption and requiring a high medical loss ratio would have the same effect, stimulating competition and holding down profits.
Both of these provisions are being advocated by the House, which will have to drop its public option if they are to agree on a bill that will pass the Senate. I have yet to see or read comment from the most problematic members of the Senate -- Lieberman (CT), Nelson (NE), Lincoln (AR), Landrieu (LA), Conrad (ND), to name the obvious ones -- saying whether they would vote in favor of a bill with either or both of these provisions.
Once again, folks, if you care -- and if you're chronically ill, you really should -- call or write your members of Congress about these and other issues (see last post, below). You can find your Senator here and your Representative here. Jennifer
Friday, January 8, 2010
Typically, at this stage, there is a formal conference of chairs and ranking members of both Houses to reconcile the two bills. However, it appears that, in this case, the process will be less formal, mostly because formal conference establishes several procedural hurdles in the Senate that would cause further delays.
There are several issues up in the air. I probably won't catch them all, but here are some highlights:
1. Effective date -- House says 2013, Senate says 2014
2. Amount of subsidies -- progressives are pushing to make them higher
3. Should the Exchange -- the marketplace for buying insurance -- be national (House version) or state (Senate version)?
4. Nebraska's special Medicaid deal -- to get Senator Nelson's vote, Senator Reid provided that Nebraska (Nelson's state) would not have to pay any share of Medicaid expansion. Needless to say, Senators from other states are fuming. Nelson now says the deal should be extended to all states, but that would break the budget neutrality of the bill as a whole, and that can't happen. Hmmm.
5. How to pay for this - the Senate's so-called Cadillac tax, a 40% excise tax on plans that cost more than $8500 for an individual and $23,000 for a family, hurts union members, so there are lots of liberals against it. However, the President is for it because he believes it will lower health care costs in general. He believes that if we patients have to pay more for health care, we won't use it as much, as if that's a good thing. We've written Congressman Joe Courtney of Connecticut, who's leading the charge against this tax, laying out how ridiculous this is for people with chronic illnesses. First, if we don't get the care we need, we will get sicker, which makes our care more expensive, not less so. Second, do you know anybody with a chronic illness who goes to a doctor more often than absolutely necessary? Bunk!
Other revenue issues -- the House wants a millionaire's tax -- a tax on people who earn over a certain amount (they're talking about the amount). The Senate has an increase in the Medicare tax for the wealthy.
6. There is a really bad provision that allows employers and insurers to require people to participate in wellness programs, and that would result in higher premiums -- as high as 30% extra -- for people who don't meet wellness program goals. Um, I thought we were getting rid of pre-existing condition penalties?
7. Although lifetime caps on benefits are eliminated, there's still an issue about annual caps, at least as applied to plans that currently exist (grandfathered plans). We joined with a coalition of groups to press the Senate for elimination of annual limits, and we did get a change -- annual limits would have to be within restricted amounts, as determined by the Secretary of HHS, which is better than letting the insurers set "reasonable" caps, as the previous version allowed. We're now trying to make sure this ends up in the final version.
Those are some of the highlights. Since this is all happening behind closed doors, it's hard to say what else is up in the air. The leadership is really threading a needle at this point. The cost of the bill can't exceed over $900 billion over a 10 year period or it will not be budget neutral, breaking one of the President's main promises. The Senate bill is estimated to cost $871 billion over 10 years, whereas the House bill would cost $1 trillion. Once you eliminate the public option -- a significant money-saver -- you're looking at cutting about $150 billion from the House bill, or adding no more than $30 billion to the Senate bill. That means everybody can't have what they want.
There still are a whole lot of people -- a lot of my friends who aren't talking to me right now because of the letter to the editor I sent to the NY Times -- who think we should kill any plan that doesn't have a public option. It's true that any of the compromises on the table will benefit the insurance industry at least as much as anybody else. I continue to believe, though, that anybody who answered the phones at Advocacy for Patients for a day or two would agree that just having subsidies, just eliminating pre-existing condition exclusions, is better than no change at all.
The compromises on the table are very, very far from perfect. They contain way too many concessions to industry -- not only insurers, but pharmaceutical manufacturers and health care providers. But as long as Joe Lieberman and Ben Nelson are needed to get to 60 votes, there is nothing big to be done. Hopefully, there will be favorable tweaks to some of the provisions outlined above. But even without that, we will be better off with reform than without it. Jennifer
Wednesday, January 6, 2010
First, I gasped in shock. How can this be? I just made (another) donation to his campaign. He's a pillar of the Senate, one of the most reliably liberal members. He's championed everything from Family & Medical Leave to health insurance reform to every kind of civil rights imaginable. How can he just give up?
Then I told myself I probably shouldn't be so surprised since it was going to be a long, tough, uphill battle for his re-election. He's tattered and battered by ethics probes (which exonerated him), and he's been facing strong Republican opposition. There were those who were urging him to step aside so that the Democrats would have their best shot at holding onto his seat. Still, not only did I think he would run, but I thought he would win.
Then I felt sad -- I am an unabashed Chris Dodd fan. In my mind, Ted Kennedy's conscience was still around as long as Senator Dodd was in Washington. I've worked with Senator Dodd's staff on countless occasions. We got a medical visa for a man to come to the US to get medical care that saved him from having his leg amputated. We talked about health insurance reform. And every year, when I asked, he signed onto the Inflammatory Bowel Disease Research Act as a co-sponsor. So while I certainly am not an insider, I had enough interaction with Senator Dodd's staff to really value his representation.
And then . . . then I thought about my old boss, Richard Blumenthal, the Attorney General. Almost as quickly as it registered with me that he would run instead of Senator Dodd, the Associated Press issued a story saying he's announcing today at noon.
I may be a Chris Dodd fan, but I am a Richard Blumenthal cheerleader! I worked for him for 5 years. We worked very closely -- he argued a case of mine in the state Supreme Court; we tried a case together; and I became the lead health care fraud attorney in his office. In addition, I started his health insurance consumer advocacy program -- where I learned how to do health insurance appeals. He is not the warmest and fuzziest of people, and I haven't had much contact with him over the past couple of years. But he has done a great job for the people of Connecticut and will be a great Senator.
So while I'm sad for Chris Dodd, I'm glad Richard Blumenthal finally will have a shot at the Senate, which he has wanted for a very long time. I suspect that no Republican can even come close to beating him. And there is no dirty laundry; Richard Blumenthal is intensely careful, paying for things like his own car so nobody could say he ever used it for a personal reason, while other state officials ride in cars purchased by the state. He's worked hard for this; he has insisted that every constituent's letter be answered, and answered well and fully -- many thousands of letters a year.
What Richard Blumenthal doesn't have that Chris Dodd does is that warm personality that makes you want to have a beer with him (if you drink beer). But people in Connecticut love him because he has been their champion. I have never seen a public official more committed to serving individual members of the public. You'll read about his challenges to Microsoft and tobacco and credit card companies, but the reason he'll win is all of the small matters that his office resolved for consumers. Never once did we talk to the press about beating the pants off of an insurance company on behalf of a single consumer because we knew that, if we trumpeted our successes, the insurance companies would be less likely to resolve things in our constituents' favor in the future. Each of his 225 or so attorneys probably handles 20 or 25 letters from constituents per year, and that's not counting the full case load of his consumer protection unit, the folks who now do health insurance work for him, and probably many others whose entire caseload consists of small cases on behalf of individual citizens.
And so now, he will have earned the votes of all of those individuals. His chief Republican challenger -- one of the founders of WWE wrestling (in the Senate? Really?) -- has had no contact with the people of Connecticut, while almost everybody has at least one Richard Blumenthal story to tell, and the vast majority of them are positive.
I emailed a friend this morning saying "the world sure does move quickly." When I went to bed last night, Chris Dodd was running for re-election. When I awoke this morning, my former boss was running instead. Wow. Jennifer
Tuesday, January 5, 2010
My gut is a mess. I need to get back to swimming (I usually swim every morning at 6 am, but I had an open wound and then surgery, so I had to take a hiatus). Once you stop something like that, it's so hard to start again, and there's NO way I can do it if I can't count on having a half-hour without needing a bathroom, which I can't right now.
I still have the feeling like everybody wants something from me -- and of course, they do -- that's my job, for goodness sake!!! And it's not that I don't want to help -- I do. It's one of the few things any more that gives me any energy. But my fatigue level is such that every time the phone rings, I have to take a deep breath and steel myself for the coming request.
I know it's just that I'm exhausted. I love my work. I even love my life, pretty much. Could I even handle a job out of the house? Pantihose? I'm not sure I have it in me any more. It's one thing to work 12 hour days in sweats three steps from a bathroom; but 12 hour days dressed up? I don't know if I can do it any more.
Still, running this business is so incredibly difficult. Not only am I in a situation in which nobody is worrying about me, but I have to raise all the money, do all the work, supervise the staff and interns -- and on and on. I just had to do end of month, end of quarter, and end of year financials and tax preparation -- it's a huge job in and of itself. And yes, we have some good grant money coming in right now, but it's (1) only for a year; and (2) tied to more work I have to do.
I'm so frigging tired.
This is not an aimless rant. One of the things we're seeing in the responses to our chronic illness survey is that one of the main problems is fatigue, and I totally get it. Sitting up rather than lying down takes effort. Typing takes effort. Walking downstairs takes effort. It just all feels like too much.
I feel like, if I had maybe a month off, I would feel better, but one week while listening to phones ringing and worrying about what's piling up -- it just didn't cut it. I might feel the same after a month. It's about chronicity. Being sick every single day, being in pain 24/7, not getting proper nutrition because I'm in the bathroom 10 times a day, not getting good sleep because I'm in the bathroom -- heck, the phone rang here at 10:45 last night and 8:30 this morning, both business calls!!! There is no time to recharge my batteries.
I don't have a clue what the answer is. I've noticed recently that doctors are prescribing things like Ritalin and Provigil off-label to help people with fatigue. Just what I need -- another pill! I think I'll stick with my one coffee per day. Still, it's tempting.
Anyway, my point is that chronic illness = tired -- period. And so I turned down an 8 city tour to talk about chronic pain because I can't bear the thought of 8 trips. And I will turn down other things. I will do my best to keep Advocacy for Patients going. I don't know what to do about the fact that our caseload is up so much -- I am telling people how to solve their own problems rather than taking their cases much of the time, which is less fun and interesting for me, less beneficial for the patients (I know, I'm empowering them and that's good, but having a lawyer really does make a difference with an insurance company). I'm doing everything I can to cut back and protect myself. But beyond that, I have no clue how to deal with a fatigue so deep and profound that sitting up takes effort.
I guess I keep doing it one day at a time. But it's not a whole lot of fun. Jennifer