Wednesday, April 29, 2009

The Best Laid Plans

Being sick changes everything. I have an incredibly demanding travel schedule this week-end. On Saturday, I'm flying to Chicago, giving 3 talks to PSC Partners Seeking a Cure, a group devoted to a liver disease called primary sclerosing cholangitis. Then I rush back to the airport to catch a plane to Seattle where Pearl Jam's Mike McCready will be playing a benefit concert for the Crohn's & Colitis Foundation's Camp Oasis and Advocacy for Patients with two of his side bands, Flight to Mars and Shadow '86, which is a Hendrix tribute band. I'm very excited about the concert, and of course, I'm thrilled that it will benefit Advocacy for Patients, but when all is said and done, Saturday will be close to a 24 hour day -- hard even for a healthy person -- harder without any food. Then I have Sunday in Seattle, and I travel all day on Monday to get home by about 7:30 pm, if all goes as it should.

For me, it means intense planning. I know I am going to be rushing through security in Chicago, and since the only work day I'll be gone is Monday, and I'll be on planes pretty much all of that day, I'm not taking my laptop. I hope I'm not sorry about that. I've got my meds all packed -- easier said than done. I have Emily (my feline buddy) taken care of. But all of those things are the visible signs of planning.

I have done all I could do to keep my schedule free this week and next week, the week before and the week after. The concept was that if I weren't flattened under a truckload of work the week before I go, I would have more energy for the trip. And since I know I will come home a wreck, I've kept my calendar clear for next week, and am even planning to stay in bed on Tuesday in the hope that I will not get any sicker than I already am. Because I do still have c-diff, not to mention the usual Crohn's and gastroparesis.

But boy oh boy, the best laid plans don't always work that way. Our intakes are up considerably, and the difficulty of the cases is increasing, as well. So this "quiet" week has been anything but. I didn't eat dinner until 9:30 pm last night. That's a long day by any standard.

I confess, I'm worried about how I'm going to manage all this.

When you have a chronic illness, planning is key. Whether it's asking for FMLA leave before it becomes an emergency, or having a living will, or just strategizing around a particularly difficult time at work, planning matters.

And then again, plans fail, too. Knowing that scares me. I suppose I'll make it through this adventure just fine. I just wish it all didn't have to be so darn difficult. Jennifer

Thursday, April 23, 2009

Privacy and Anonymous

I have to confess that I'm annoyed by the ongoing, relentless, uninformed comments posted by Anonymous (of course) about our new book, It's Too Hard to Be Sick In America. Anonymous has a problem with me telling the stories of patients without permission. Anonymous doesn't know for a fact that I don't have permission. And although I have told Anonymous over and over again that I have changed EVERY name in every story, and been very careful to avoid facts that might identify the patient, Anonymous continues to accuse me of writing stories in which "folks are being named." THIS IS JUST PLAIN FALSE. The only real names that are used are mine, Mike McCready's, and one patient who actually asked me to use her real name, so I did.

I'm posting this to reassure people because Anonymous keeps getting the facts wrong. Throughout It's Too Hard to be Sick in America, I have made very careful and deliberate efforts to change names, and even avoided identifying the state patients live in for the most part, and changed or omitted other facts that would identify the patients. Nobody but me and the patient would recognize the story. Real names are not used. States of residence are omitted almost entirely. Facts are changed to disguise any element that I thought might identify anybody.

The privacy of the people whose stories are told has been and will be completely protected.

I told patients' stories in Friday Tired. They thanked me. I use sample appeal letters and other documents in the appendices to the Know Your Rights Handbook, which has sold thousands of copies. I eliminated all patient names but used the rest of their "cases," and I have never gotten a single complaint. Lawyers and doctors talk about their clients and patients all the time, and as long as identities are not disclosed, it is perfectly ethical and professional. Indeed, how to we teach, how do we illustrate, without using people's stories?
How many stories have I told on this blog without a single person raising an objection?

Someone else posted a comment that I believe was absolutely right. Anonymous is missing the point of this publication. Instead of reading the stories, he/she is harping on a point to which there is no merit. The point of this book is to illustrate the obstacles facing the chronically ill so that policy makers will have an accurate understanding of chronic illness when they think about health care reform and chronic disease management. The point is made most powerfully by telling real stories of real people, in my opinion, while always protecting their privacy.

And, in addition, how many of us who are chronically ill have run up against people who simply don't "get it?" Next time that happens, you can hand them a copy of this book, because when you read these stories, you can't help but get what it's like to be one of us. Again, stories are the most powerful way of making this point.

I don't understand Anonymous's motives for trying to discredit a FREE publication that is aimed at doing a public service to all of the chronically ill. Nobody whose story is told can be identified. Anonymous doesn't claim to be someone whose story was told. He/she doesn't even seem to have read the stories. I realize that, when you put yourself out in the public domain, you have to accept the fact that there will be people who don't like you, and who dog your every move. But why this important publication on this important issue? Why does Anonymous want to distract us from the real point of this book? Why create a fictitious issue where one doesn't exist?

I worked very hard for a long time on this publication. I begged for money to cover printing costs so that I wouldn't have to sell it. I wrote it using the patients' initials, and then changed all of the initials to completely false names that are nowhere near the real names. I have been very careful about patient privacy, while giving some meaning to the trials and tribulations of these patients by using those experiences to teach. It's how I feel about the work I do -- it makes my disease into something useful, as I use my experience as a patient to inform the work I do on behalf of other patients. Now, these patients' burdens are being used to enlighten others. Don't you think those patients are and will be proud that something good came out of their horrors?

I believe that I have been entirely ethical and professional about preparing this publication. Anonymous disagrees. I can live with that. Anonymous has made his/her point repeatedly. I have answered repeatedly, correcting the FALSE statement that "folks are being named." I am confident that I have done nothing wrong. And I am confident that these stories needed to be told. And, alas, I'm confident that nothing I say will convince Anonymous, so I won't be addressing any further comments left by this person. This is my final word on this subject.

You're all welcome to read the book -- or not. You can disagree with me -- or not. But can't we focus on something that really matters? What matters is that people are going through complete hell, and they did nothing to deserve it other than be sick. That's shameful. It should not happen in America. In light of the fact that I have taken such pains to protect patient privacy, isn't the point of this publication more important than this baseless accusation?

Enough said. Again, I will not be responding to any more of Anonymous's comments. I promise Advocacy for Patients' clients that their privacy is closely guarded. It's why we don't use volunteers, why medical records never leave the office, why we comply with HIPAA even though technically, legally, we are not a "covered entity." Patient privacy is paramount. This book does not violate that principle. Jennifer

Wednesday, April 22, 2009

It's Too Hard to be Sick in America

I was driving Gloria Steinem to or from the nursing home where we placed her former neighbor, whose dementia had gotten the better of her, so she no longer could live on her own. I was giving one of my usual rants about the horrors of the health care system, and I said "it's too hard to be sick in America." Gloria said "that would be a good title for something." So when I decided to write a book of stories of some of Advocacy for Patients' clients, I had the title before I had anything else.

Writing It's Too Hard to Be Sick In America was equal parts easy and difficult. It was easy because the stories are so dramatic and textured that they needed little, if any, embellishment. Difficult because I was reminded of how hard things can be for the chronically ill. Indeed, telling the stories of patients who no longer are with us was heartbreaking.

I always do my best, but there are plenty of times when there's nothing I can do. I can't change the fact that the Social Security backlogs are running in the years rather than months. I can't change the fact that a teacher announced in front of a class that a child had a chronic illness and could not control his bowels. I can't change the fact that people die. But I feel all of these losses. On good days, this work is absolutely miraculous in that sometimes I actually save a life. But there are many days on which I can do no more than try to ensure that people feel like they were heard and supported, even if I have no answers.

And in this economy, I increasingly have no answers. There's no pot of money out there that people can tap into if they need a diagnostic test or surgery or something. There's no fund established by Bill Gates and Oprah Winfrey to cover the cost of health care in the United States for truly compelling cases.

By the way, if anybody wealthy is reading this, I'd be happy to administer such a fund for free, just to have a way to address this unmet need.

Yesterday, I spoke to a woman who's on Medicaid in Ohio. She and her husband are both on disability, which actually puts them over the federal poverty level, so she has Medicaid only after she spends $600 out of pocket on medical expenses (or incurs bills in that amount). But she doesn't have $600. And she gets her medication for free through the pharmaceutical company patient assistance program. Her doctor visits don't equal $600, and she hasn't needed anything major lately. But that also means that she doesn't go to the doctor as often as she should, and she doesn't take all of the medications that are prescribed for her, and she and her husband take in about $2500 per month for two people to live on, with rent taking up nearly half of that. $600 per month is one-quarter of their income. It's nuts -- but I have no answer.

Anyway, I hope you will check out It's Too Hard to Be Sick In America. It's a FREE download. You may find your story in there (with the names changed, of course). And Pearl Jam's Mike McCready wrote the foreword, so you don't want to miss that. We haven't picked our best outcomes, nor did we pick our worst cases. We simply chose those that were burned into my memory, that I will never forget, for better or worse.

Next time you run into someone who doesn't "get" chronic illness, send them to read It's Too Hard to Be Sick In America. After all, that's the best reason for us to have written it -- so everybody out there will know what it's like to live with the obstacles we face every day. Jennifer


If you don't already, I invite you to read the comments posted to this blog. Some of them are really smart and stimulating, and some are just gosh darn mushy, and those make my day.

Thank you, readers. I really appreciate your comments more than you know. Jennifer

Monday, April 20, 2009


Ever wonder why there are so many songs about Monday?

Monday, Monday -- Mama's & Papa's.
Monday Morning -- Fleetwood Mac
Blue Monday -- the New Order
I Don't Like Mondays -- the Boomtown Rats
And my personal favorite, Just Another Manic Monday -- the Bangles

I could go on. Search for "Monday songs" in Google and you'll see what I mean. They're all sort of similar, too. Nobody much likes Mondays, it seems. I'm totally on that bandwagon.

I also hate, though, that I wish my life away. Right now, I'm staring at a crazy calendar this week, and next week, I have to do all the usual end of the month stuff PLUS I have a trip on May 2 that even a healthy person would find challenging -- I go to Chicago, give three talks, then fly onto Seattle for a benefit concert that night. Now, I wouldn't miss either of these events for the world, but did they really have to be on the same day? Thanks to time zones, I can make them both, but boy oh boy am I gonna pay for this. Remember -- no food, either. But the fact is that, in my mind, there are three sets of time: Before trip, during trip, after trip. And I am living for after trip. That's more than two weeks away, and I'd just as soon skip over that whole time.

But no, that's wrong. I love talking to patients. And even more, a Mike McCready benefit concert, and a chance to see Mike and his wife Ashley, and a bunch of other West Coast friends and acquaintances, including Kris McFalls, the patient advocate for IG Living magazine and the newest Board member of Advocacy for Patients with Chronic illness -- this is going to be a great trip!!! I can't allow myself to wish it away.

Indeed, we can't allow ourselves to wish our lives away.

Normally, my Monday starts with a trip to the grocery store when it opens at 8 am. However, today, I have an 8:15 am meeting with a school (I'm on speakerphone), and it's not going to be fun. The school is immensely inflexible, and the parents are a bit . . . um . . . flighty? Unpredictable?

But mostly, Monday's stink because they're the farthest day from the next week-end. Like I said, though, I hate that I wish my life away, living for week-ends and dreading all that comes in between. Even though I love my work, I'm not happy about the volume, the stress, the cost, the need to raise money, my need to be the strong one no matter who calls with what problem. It's a lot of responsibility. And we are nowhere near hiring another lawyer -- not in this economy. But that puts it all on me, and that's really hard. And it seems harder on Mondays, when the whole week is laid out in front of me.

I am going to start trying to appreciate Mondays. Mondays are new beginnings. They are the starting point. Without Mondays . . . there would never be a Friday, Saturday, or Sunday. On Mondays, if you hate Mondays, you hate the "now," and the "now" is the only thing really worth enjoying. If we are mindful of the "now," we don't have to distinguish "nows" by days of the week -- it's all just a "now." And the "now" is where we live. Even when the "now" is Monday.

I say let's try to enjoy every moment of our lives. We never know what moment will be our last. So let's appreciate what we have. Even if it's Monday. Jennifer

Friday, April 17, 2009

Secondary Effects of Chronic Illness

Doctors talk a lot about secondary effects of illness. For example, gastroparesis means your stomach muscles are paralyzed. That is the primary effect. The secondary effects are nausea and vomiting -- the effects of paralysis of the stomach muscles. The primary effects of Crohn's disease is inflammation of the lining of the intestines. The secondary effects are those that flow from the primary effects -- diarrhea, pain, fatigue, etc.

What doctors don't talk a lot (enough) about are the secondary effects that are emotional in nature. The more I go to the bathroom, the tireder I am. And the greater my fatigue, the harder it is for me to filter my emotions. So if I'm angry, the anger gets a voice even when, on a better day, I might have been able to talk myself into sucking it up and not expressing it. And I cry more often when I'm that kind of tired -- not tired that goes away with sleep, but sick tired. It's just that much harder to cope, to repress emotion, to put on a happy face, when you're bone tired, when you're so dehydrated that you have palpitations, when you are in the bathroom 10+ times per day.

So I yell at other drivers -- no big deal -- lots of people do that. I get distracted when I'm on the phone and I get an email and I can't force myself to focus on one at a time, which can be annoying to the person I'm talking to. I get angry at a family member because I think it's "safe" to express myself to someone whom I think ought to "get it," but they don't, so my brother wants nothing to do with me, and my dad keeps a safe distance. And once in awhile, I react inappropriately in business.

I work very hard at this last piece. I cannot provide any less of a service to someone on a day when I'm sick and tired than I would on a day when I'm feeling okay. I cannot voice frustration or anger. I cannot express emotion, truthfully. The world seems to think there is no place for emotion in business, and whether or not I agree, I have to conform to the norm if I am going to be successful in business.

The vast majority of the time, I'm fine with this. But I have to admit that there are times when I allow my feelings to show, when my filter just doesn't work right. It's always when I'm sick and exhausted -- always. The emotion is honest -- I actually think it's sort of puritanical and fake for everyone to be cheery all the time, to insist on excluding all emotion from certain relationships. But it doesn't matter what I think, because others will judge based on the norms, and the norms are that emotion stays out of it.

A couple of weeks ago, I got angry at a woman who refers a lot of cases to me. We have a protocol. She knows I need time to collect medical records and write the appeal. But she had a case with a 60 day appeal period and she sat on it for 30 days before referring it to me. And then she sent me a second case that was supposed to be a first level appeal, but it turned out to be another 30 day deadline. You have NO idea how hard it is to gather medical records in 30 days. In one of these two cases, there are 5 doctors, so that means getting records out of each of them. It's very time consuming, to say the least. So I emailed her, reminded her of the protocol, explained the position that these 2 short-term appeals put me in -- and I shouldn't have done any of that. I should have quietly told her boss. I should have asked to review our protocol. I should have done anything other than express the fact that this was very upsetting and difficult for me. I didn't yell or curse or anything, but I let her know how upset I was. And there's no place for that in business.

Maybe you will think blaming my illnesses for the lack of an emotional filter is letting myself off the hook too easily. But I spoke to a woman yesterday evening whose boss is treating her badly due to her illness. She kept falling into sobs and tears, and then apologizing and reassuring me that she's not usually so emotional, that she's very business-like. She's sick as a dog and may be losing a job she's had for 15 years. Emotion is pretty normal. But the fact that she couldn't stop herself from expressing it? I think it's a secondary effect of her Crohn's disease. She had no filter. The energy it would have taken for her to moderate her communication to me just wasn't there. She was too wiped out and worn out to talk to me about this emotional issue without showing me that emotion.

So I don't think it's just me, and I think it does have to do with illness. Part of it may just be the anger at our illness, right? We're mad as hell that "fate" (or whatever) chose us to bear this burden. But I think exhaustion -- that bone tiredness that doesn't go away no matter how much you sleep -- plays a huge role. And that exhaustion is a secondary effect of most chronic illness.

Earlier this week, the NY Times ran an article on clostridium difficile, or c-diff, which is the bacterial infection I have now. They talked about two patients -- one who missed 20 days of work and one who was hospitalized for 2 weeks. So here I am, with my Crohn's disease and gastroparesis and c-diff, going to the bathroom no less than 10 times a day, on antibiotics since February almost non-stop, having to deal with all of this while traveling and working 12-15 hour days. Not only do I not miss 20 days of work -- I don't miss one! And for the most part, I am overly sweet to people to compensate for my fear that I will react without a filter. I am the broad shoulders the world can lean on, just to compensate for the fact that I know I don't have an ounce of energy to spare.

But I win no awards for not taking sick days. The one time my emotional filter fails to function as I would like it to, I don't get understanding; I get called on it, I am ashamed of myself, I am hurt that I am so misunderstood. I wonder -- would it be better to just say I'm sick and I'm not taking on any new cases until I'm feeling better? Would that be easier for other people to understand and/or respect?

I don't know. All I know is that the fear of falling behind is so great that I do not take time to rest -- how can I rest knowing that I have appointments out of the office almost every day next week, so there will be little time to catch up on anything. I do my best to remember to filter my emotion. When I feel the emotion rising, I look for my cat Emily, or now I look for Amieta and her smile at me, because they set my emotion back to equilibrium. I try. But I am not perfect.

Maybe I'm making excuses for myself. But because I see this in so many other patients, I don't think it's that. I think this is part of being sick, of flaring, of getting something "extra" like c-diff. I think it's about exhaustion. I think it's about losing one's filter.

Unfortunately, they don't make medicine for this. Jennifer

Wednesday, April 15, 2009


So my wonderful assistant Celeste had a baby in January and took 12 weeks of maternity leave. I missed her a lot, as you can imagine. What you don't know is that I've known Celeste since she was 8 or 9 years old; her mom and I are dear old friends. So watching Celeste through her pregnancy and into motherhood carries special meaning for me.

Celeste came back to work last week . . . with Amieta. I don't think either one of us knew how it was going to work out. I knew that I don't pay Celeste enough for her to work and put Amieta in childcare, and I don't think Celeste would have entrusted her baby to anybody, except maybe (and that's a definite maybe) her mom. From my perspective, a trained, efficient Celeste is far preferable to an untrained stranger. So Amieta's here.

We've figured out a few things so far. First, Amieta either thinks I'm the funniest thing she's ever seen or she really likes me, because her face lights up when she catches a glimpse of me -- and really, what more could I want in life? Second, we had to get a baby monitor so Amieta could sleep downstairs in Celeste's office while Celeste could be upstairs working with me. We've also ordered a baby carrier -- one of those things you strap on so you can "wear" the baby and have your hands free. It hasn't come yet, but I think it will make things even better.

And the big show down between Amieta and Emily (the cat) hasn't happened yet. It will, and it will be interesting. I'm wondering who will get the better of that one!

So far, Celeste's been able to stay current on her work and do all the things I really need her to do. I probably do go downstairs a bit more often than I used to, and Celeste spends less time up here with me, but the work gets done, and that's the important part.

Celeste worries that Amieta will need more of her time when she is ready for more stimulation. Celeste may take her to a play group then, and she may cut back on her hours. That would be okay -- she's still worth the sacrifice. We have a HUGE project going on that will be ongoing for a good year, and if I had to do Celeste's part of it, I think it would put me right over the edge.

So Advocacy for Patients grows. First it was me and Emily, our mascot. Then we were lucky to get Celeste to join us. And now Amieta.

There's something about having a baby around. I don't have words for it yet. But it brings out the maternal in me in a good way. When Amieta smiles at me with her dimples, I can't help but smile back.

How many "employees" make you feel that good?

I think our little progressive experiment is working just fine. Jennifer

Tuesday, April 14, 2009

Why Susan Boyle?

I keep watching that performance by Susan Boyle (the link is in my previous post) and the tears keep coming. Why? And why here, a blog about chronic illness?

I think it's what the judge Amanda said. Everybody expected her to sound like she looked. She's almost 48 years old. Never been kissed. Not pretty. Sort of a weird sense of humor -- a bit bawdy swiveling her hips, I thought.

Everybody -- everybody -- thought it was a joke. Everybody expected her to sing like she looks. Before she had one note out of her mouth, everybody had judged her.

And then came that voice, and it's astounding how gorgeous and powerful it is. It's hard to match the person with the voice, and yet, there it is.

Still, what does this have to do with chronic illness? EVERYTHING!!!!

We are sick. We are exhausted. We don't take as good care of ourselves as we should. I don't remember the last time I went clothes shopping. I look like a fat middle-aged woman who can't move very well. And it's been so long since I've been kissed that it may as well have been never.

But I save lives. I inspire people. I know this must sound really egotistical, but it's also true. And you can, too.

Don't let this body fool you. Don't let your own body hold you back. You have an angelic voice within you waiting for a chance to soar. Write it. Speak it. Paint it. Be it. Do it. Let it out. Speak the words. Speak your heart. Sing it.

Our chronic illnesses can hold us back if we let them, just like being not so pretty from a small village in the UK, being overweight and alone, could have stopped Susan Boyle. And really, she didn't think about all those obstacles. She just thought this was her chance to shine and she took it. And boy oh boy did she shine.

We can do it. I know it.

I'm going through a tough time these days. You know I have c-diff, and the antibiotics are kicking my butt and I feel like a truck ran over me. But it's more than that.

There's a medical office in Texas that found me when one of their patients had trouble with an insurance issue. I resolved that issue, and whenever they had a patient with a need, they referred the patient to me. So when they referred Laura (pseudonym) to me, it was nothing remarkable. Her case was particularly complicated. And she had an "insurance consultant" also helping her. I spoke with the "insurance consultant" once. I said that we couldn't both contact the insurance company, so one of us would have to take the lead. She said I should.

For several weeks, I worked on the file. The insurance company kept asking for more information and I provided it. Finally, they had what they need and submitted it for decision.

And then I got an email from the client firing me. I asked why. I knew it would hurt the case because the insurer might feel under less pressure without a lawyer in the mix. The medical office spoke with the patient. It seems that the "insurance consultant" runs a "church" out of her house. She has maybe 10 members. And she had decided I was the devil. I'm not sure why; the only thing anybody ever raised with me was whether I was working for the patient or for the medical office. Since I have NEVER done a collection case for a medical office, I was pretty vehement in stating that of course I was working for the patient.

The patient then rehired me.

Then she fired me again.

All with no explanation. In the space of about 24 hours. Fired, rehired, and fired again. When the "insurance consultant" talked to the patient, I was fired. When the medical office talked to the patient, I was rehired. Clearly, this poor woman was being pulled apart by others.

I got a call from a lawyer who was going to take over the case -- or was thinking about doing so. I was very careful about what I said -- maybe he's part of this "church" too. But I told him what I'd done on the case. He said it sounded like I had done just right. He actually apologized for how I was treated. He volunteered that he thought the patient was under undue influence. Again, I was careful not to volunteer my own opinions. He said he hoped he could work around the problem because he was local and could meet with the patient face-to-face. I wished him well.

Then I got a call from the insurance company. The woman I'd been working with there got my letter saying I no longer was representing the patient. She was surprised and confused and told me that she thought we'd been working so well and I'd been doing such a good job. I told her I couldn't comment, but thanked her for her kind words.

Because this was a communication about the case, I sent the patient and her "insurance consultant" an email reciting the conversation with absolutely no editorializing. I felt obligated to report any communication about the case.

Well, the insurance consultant responded. Here's what she said about me. "Unprofessional." "I have suspected that you were an alcoholic or perhaps on drugs due to your off the wall times in working and the bi-polar behavior you have displayed." "Lunatic."
I "yelled" "profanity." I am "disgusting."

This was last Friday. It hurt me terribly. As if all the good work I do could be wiped out by this woman who doesn't know me, who doesn't care whether keeping me on the case was best for this patient. With my gastroparesis, if I drank or did serious illegal drugs, I'd land in a hospital pretty quickly. It's true that I work strange hours -- sometimes starting as early as 4 am -- but that's because I'm committed to my work and my gut doesn't let me sleep, not because I have a psychiatric problem. And I had one conversation with this woman during which I did not yell or use profanity. Indeed, my notes indicate that it was a brief, non-adversarial conversation of relatively little significance.

Over the week-end, I talked myself down from the major upset. If roughly 6 people out of 3000 or so have been unhappy with my work, my advice, that's a pretty good batting average. But still, the whole thing has nagged at me because I know it would have been best for the patient for me to finish the case. I had developed a relationship with the insurance company. I had answered all of their questions. They were waiting for a decision from above, as were we. There was nothing left to do on the case.

Regardless of my rationalizations, somehow I felt that I failed the patient and, of course, failed Advocacy for Patients with Chronic Illness. If anybody -- even someone who's clearly making baseless allegations with no foundation in reality -- thinks I'm so horrible, then I must have done something wrong.

And then, Susan Boyle. Right when I needed her. She reminded me. What matters is what's in my heart, what I do with my voice. I can't let one challenged "insurance consultant" with whom I've spoken once make me cynical, like the audience who thought Susan Boyle was going to be a joke. And I can't let my "audience's" cynicism define me. If they get a good resolution to that case, it will be because of my good work -- nothing more and nothing less.

I can't fix everything, for sure. But I can be Susan Boyle. I can look tired and old and fat. I can be all those things, and sick, too. And I can still sing.

Susan Boyle touched the raw spot in me, the spot that feels misjudged and wrongly accused. She reminded me that the best response is to SING -- with all my heart.

So what does Susan Boyle have to do with chronic illness? She reminds us that we can shock the world with the beauty of our voices. We can kill cynicism with the power of our songs. Whether we're old or fat or sick or ugly, we can still SING.

Screw the "insurance consultant" church lady. She can't undo the good work I've done, nor can she stop me from doing good in the future -- as long as I don't give her the power to stop me from singing. Jennifer

Monday, April 13, 2009

Don't Miss This

I know, I know, she was all over the internet, so why here?

Because I'm old. And fat. And sick. And she's all those things. And a miracle comes from her. So maybe that means there's hope for me, too.

She has made my spirits soar. And I needed that today. Jennifer

Blogging, Self-Pity, and Other Stuff

I just read that Paul Krugman, the Nobel-prize winning NY Times columnist and Princeton economics professor, posts on his blog as often as 6 times a day. I can't even post six times a week! Unlike Krugman, I don't have that many important things to say!!!

Today, I'm having a bit of a pity party. It's Monday, so start there -- bummer. And I still have c-diff. I've been on antibiotics on and off (mostly on) since the root canal in February. I'm dragging my butt around. I can't swim for fear of needing a bathroom on an urgent basis. And let me say it again: it's frigging Monday.

I think it stinks that I wish my life away, living from week-end to week-end because I'm so exhausted from dragging myself around. I do a little better when I swim every day, but right now, that's out of the question. I just have no energy. But I hate that I live from Monday to Friday every week wishing the week would just end. I truly believe that the only way to real contentment in life is to appreciate every moment as it comes. But how do you appreciate moments when you feel so sick? It's times when living in the "now" is most difficult when it's also most important.

I went for a blood draw this morning and the tech said "when was the last time you drank anything?" Well, first of all, I had to fast for the test (DUH), but second of all, I have c-diff, so of course I'm dehydrated -- no surprise.

Just in case you think I'm a total downer today, I did make the Wall Street Journal.

Need a Real Sponsor here

Financial Prescription

If you have a chronic illness, the regular rules of estate planning may need some fine-tuning

As a legal advocate, Jennifer Jaff helps chronically ill people gain more control over their lives. So, when she was diagnosed with a serious stomach disease last August, she decided to take control, too -- and create a comprehensive estate plan.

She "wanted to get everything in order to make sure my wishes were carried out," says Ms. Jaff, an attorney and founder of Advocacy for Patients With Chronic Illness Inc.

Among other things, Ms. Jaff asked her brother to act as her health-care proxy. She was concerned that her father wouldn't follow her wishes to refuse a feeding tube when she is no longer able to take in nutrients on her own, she says. Her brother didn't agree with her decision but agreed to abide by it, she says.


The rest is pretty boring, legal stuff about all the steps you should take if you want to make sure you're covered for that inevitable day when you can't make your own decisions. My pro bono PR guru, Jamie Diaferia, decided he's a genius, getting his pro bono clients in the NY Times and Wall Street Journal without doing anything, but he forgets that everything I know about what to say to a reporter once I get him or her on othe phone I learned from him. So kudos, Jamie.

And that's my big excitement of the day. Or maybe I should hope that's my only excitement.

Anyway, unlike Paul Krugman, I don't have six brilliant things to say each day. I'm lucky if I have one genuinely new and worthwhile idea a week. But if and when I do, I promise, you'll be the first to know. In the meantime, I'm striving to not hate the "now." Jennifer

Friday, April 10, 2009

These Are A Few of My Favorite Things

It's Friday, which is always good news. Today, it's especially good news. I traveled to Chicago last week-end, and plane travel always tires me out. But this time was particularly tough -- I think because I'm on vancomycin for c-difficile, an intestinal bacteria that's pretty miserable. And although I wore the shoes I normally travel in, my legs were killing me from just above the knee down. I worked until 9 pm on Wednesday night, first going through a draft 504 plan with a mom so she could prepare it for the school, and then going through a load of documents pertaining to an insurance appeal for another patient. So it's been a long, tired week.

So what am I looking forward to this week-end?

My most favorite thing, Emily. The time my furry feline friend and I spend together, just sitting, with her on my knee if I'm at my computer, or on my legs if I'm in bed, is peaceful time. It's a time when Emily's purrrrrrs of contentment extend to me. It's lovely time.

My next most favorite thing, sleep. I sure do love to sleep. Considering I don't do anywhere near enough of it, it's not something I take for granted. My gut wakes me up in the morning, so it's not about sleeping late. It's about naps. Ahhhhh!

Some decent TV and DVDs. If I don't sleep the whole week-end away, I have some of my favorite shows on DVR waiting to be watched. Law & Order: SVU, Without a Trace, Criminal Minds -- I like those a lot. I don't remember what I have waiting for me from Netflix, so that will be a surprise! I tend to watch rather than read on the week-ends -- it's more passive, takes less brain power. I strongly recommend the HBO series In Treatment. Its second season just started and it's every bit as gripping as the first. It's like spying on other people's therapy sessions -- fascinating.

Soup. Since I can't eat food that has to be chewed, I eat eggs or store-bought soup or cottage cheese during the week, but on week-ends, I get soup from the local Chinese restaurant. I'm able to eat wonton soup -- the wontons sort of glide down and stay there -- or I get egg drop soup, which is double protein, both chicken broth and egg. Hmmmm -- which to get this week? Decisions, decisions!

Cherry Garcia. My week-end treat. Frozen yogurt, because I can't eat the ice cream version, and I have to pick out the big chunks of cherry. But still, it's great stuff.

Sleep. Oh, yeah. I said that already!

What more could I want? Emily, sleep, good TV or movies, soup, cherry Garcia -- sounds like a fabulous week-end to me.

I hope you enjoy yours as much as I know I'm going to enjoy mine. Jennifer

Wednesday, April 8, 2009


Guess what? Exactly three hours after posting this blog entry, I got an email from my long-time contact at UnitedHealthcare saying that she will remain my contact.

It's wrong. I don't want special attention. I want them to take care of all of their members appropriately, with respect.

So those of you with UnitedHealthcare, if you can't get anywhere, call me. I'll either get it resolved for you or document the problems until I have documented enough abuse to be able to act on behalf of a larger number of patients.

This fight is not over -- not by a long shot. Jennifer

Mad as Hell

I'm mad as hell.

The subject of my rage? UnitedHealthcare.

Years ago, I wrote a report about UnitedHealthcare. It said that UnitedHealthcare routinely refuses to provide members with a copy of their file upon request, prior to filing an appeal.

You see, all UnitedHealthcare policies -- all health insurance policies -- and the federal law known as ERISA require insurance companies to provide, free of charge, a copy of everything on which they relied in making a decision to deny coverage. But when you write to UnitedHealthcare making this request, at best you are ignored, and at worst, they consider it your appeal, thereby depriving you of your appeal rights.

I wrote letter after letter after letter, finally getting in touch with the National Medical Director Dr. Richard Justman. Dr. Justman was kind and thoughtful (and you know I wouldn't admit that if it were not true). He pointed out certain clauses contained in UnitedHealthcare policies, and he assigned a lovely woman to be my UnitedHealthcare contact. So for over two years, when I needed a copy of a file or had some other problem with UnitedHealthcare that I could not resolve any other way, I went to her and she cheerily made sure I got what I needed. And yes, I used this advantage to the benefit of many patients.

All of a sudden, as of this week, my contact is not returning my calls. We had no bad words or anything; the last time I spoke with her, she was handling two matters for me with the same cheery disposition she'd always shown. So I have no idea what happened at all -- not even a clue.

Instead, I got screamed at by someone named Jeff, who's supposed to be a consumer advocate, but I'm thinking consumer advocates really shouldn't be yelling at consumers' lawyers if they want to do their job effectively. Jeff told me that I would no longer be allowed to "circumvent" the process by going to my usual contact. Now remember, I got to her through Dr. Justman, and I wasn't circumventing anything -- I was just using the contact that Dr. Justman had established for me. Jeff told me I should be dealing with customer service first. Remember, I spent at least a year fighting to just get a copy of insurance plan documents before I even got to Dr. Justman. And customer service won't talk to me without a HIPAA release (which is correct of them), but they won't let me fax them a HIPAA release so they can talk to me, so I never even get to answer the question. Jeff said I should write to appeals, and if I don't get what I need, I should write again via certified mail. Does he think a lawyer with more than 25 years of experience doesn't know to send letters by certified mail?

And the two matters he took over from my usual contact? I'll hear back within two weeks -- maybe. In one case, that means a diabetic with gastroparesis can't have her surgery -- even though we won her appeal and UnitedHealthcare agreed to pay for it -- because there's an error in the approval letter that the doctor is afraid will affect his ability to get paid. And I have no recourse whatsoever.

Yesterday, I got a call from a patient who's covered by UnitedHealthcare. She had two identical procedures, one on each hip. They paid for one and denied the second as experimental. In December, she wrote a letter requesting a copy of the documents on which UnitedHealthcare relied in denying her claim. She still has not received a response. Except that UnitedHealthcare construed her request as her appeal, denied it, and told her she has no further appeals. Again, this violates her right under her insurance plan, as well as federal law, ERISA.

So now I'm back to faxing angry letters to Dr. Justman -- until I can find a class action law firm willing to sue UnitedHealthcare for this flagrant violation of law. Because I will not take this lying down. UnitedHealthcare is the biggest, but it's also the most abusive. I was willing to give them the benefit of the doubt when they appeared to be responsive to my concerns, to the benefit of many patients. But if the gloves are off now, if they want war, they've got it.

Now, I start my letter writing again, building a record that will be enough to nail this company. I may be David to their Goliath, but remember -- David won. Jennifer