Monday, December 29, 2008
But the question is whether she will reach her next birthday. She is on heart-lung bypass. They don't know if she will make it.
My brother and his family are in Israel. He says they're safe. I wish they'd come home. I read every article, watch every newscast, with a lump in my throat.
If there's a god or goddess or anything or anybody up there, now would be a good time to step in, ya know? Jennifer
Sunday, December 28, 2008
This comes at a time of year in which I feel great sadness at the anniversary of the loss of my friend David, and, in mid-January, my mom.
David was a remarkable person. Once, when we were together, he saw a blue heron and was so excited about the miracles of nature that it was contagious and completely caught my attention. Now, when I see a blue heron, I know David has come for a visit. Always when I need him. Then again, I suppose I always need him. Nobody has ever made me felt more completely accepted than David. What a wonderful feeling that was.
His wife told me that David used to throw change on the ground because, when he was a child, it used to mean so much to him to find a penny on the ground. Now, when I see a penny on the ground, I leave it for a child to find.
My mom died three years ago, although it seems like yesterday. She'd told us all along that she didn't want to be drugged up on pain meds. She had her first shot of morphine one night and died the following morning. She had been afraid of losing her bowels when she died, of messing up my dad's bed, of the pain, of the well-meaning people who would encircle her. She avoided all of that. She just stopped breathing. My dad left the room for no more than 15 minutes, and when he went back, she was gone.
My mom's absence in my life remains gut-wrenching. She forbade us from having a funeral or memorial, from sitting shiva (as we Jews do). So my brother and I took a day off and then went back to work. Bad idea. Grieving with others serves an important purpose in helping us to move on.
Our patient was a lovely woman named Nancy. I spoke with her a couple of times, but she was too sick from chemo to talk on a regular basis. So we dealt with her doctors. When we found a trial that looked like it might fit her -- so many of them required no previous chemo, and others were in China and other places around the globe -- we faxed the information to her doctors so that they could follow up by sending lab results and x-rays and whatever else the trial coordinators wanted. Nancy is not the first patient I've lost, but it nags at me -- could I, should I, have done something more, something different?
Death is complicated for me. I see it as my way out, as my light at the end of the tunnel I am living in. When it comes, it will be welcome. But I am so sad for Nancy, who would have done anything to stay alive -- she was willing to do and try absolutely anything. And I miss David and, even more, my mom. Death may be a gift to the sick, but it is not a gift to those who love them. Then again, knowing that my mom died exactly as she'd wanted helped me accept that, since this was her wish, I could not begrudge it to her by placing my own wishes first. But I miss her, still.
Maybe she has met David. They were both flirts, so perhaps they found each other, if there is a heaven. And maybe the two of them will help Nancy find her way.
And then again, maybe there is nothing after this life and they are just gone. Strange, how okay that would be for me, but how unacceptable that is for the people I love and care about.
My mom's death came before her suffering became unbearable to feel or to see. David was very sick but unaware, at the end. He died in California, so I was not with him. His wife's long email the next day broke my heart, but it was as it had to be. Today's email about Nancy makes me sad mostly because I know how badly she wanted to keep going, fighting, searching for answers. Sadly, I don't think she found any rest, any quiet, any peace in death.
I lost two dear friends in 2008 -- deaths I cannot understand. I've written about Iris; maybe you remember. She had a loving husband, son, daughter-in-law, and literally hundreds of friends who called her Mom. And Ruth -- I don't understand a god that takes a hero, a ground-breaking women's rights lawyer with two young children and a wonderful husband, and leaves me. It should have been me, not Ruth.
Some people say death brings closure. For me, it brings questions. It takes who it wants to, not those who want to be taken. It takes those who have not lived their lives, and leaves those who feel like their lives have been well lived and are ready to go. It takes a mom, a dad, a husband, a friend. This is all very confusing to me. I don't believe in god, but I do feel in my gut that death has some choice about who to take, and I am mad as hell at its randomness, although the fact that it is random may in and of itself be proof that it is no more of a real, thinking "being" than god.
I am not going to figure out this big philosophical dilemma today. Today, I will mourn Nancy. Tomorrow, David. Two weeks from now -- really, every day -- I will mourn my mom, as I mourn Ruth and Iris. And wonder why. Jennifer
Tuesday, December 23, 2008
My first wish has to be selfish: I wish I were no longer sick and could really do all the things I would like to do in life.
My second wish is semi-selfish: I wish my friends weren't sick or in pain, either.
My third and fourth wishes (in either order) are the meat of it. I wish everybody at an insurance company who denies claims for a living would get really, really sick, and everybody who works as a debt collector would get really, really broke. Not forever -- 6 months or so will do. Just long enough so they know how it feels.
Today, I got a call from Sallie Mae attempting to collect a student loan debt from a man with an inoperable brain tumor. We've already submitted enough medical information so they should have discharged the loan -- I don't know why they didn't. But when I told the collector that he is dying and has maybe 6 months to live, she didn't skip a beat -- she just kept saying she needs $267.68 this month in order to offer him the extended payment option. I just told the woman he's dying and she's talking about an EXTENDED payment option. Does this make any sense to anybody? Two days before Christmas. I guess she already has her gifts all wrapped pretty and under the tree, waiting for Santa Claus. I hope he brings her a lump of coal.
I don't mean to sound as nasty as these people are. But when an insurer denies coverage of a medication for a 14 month old baby with inflammatory bowel disease who's tried everything else, it makes me want to look the decisionmaker in the eye and ask "how could you?" A 33 year old woman with transverse myelitis needs a certain medication -- she's already tried the other two options and they didn't work -- but the insurance company denied coverage. How can it be? Transverse myelitis will paralyze her, and the longer you go without treatment, the less chance there is that the treatment will reverse the symptoms. What horrible person at an insurance company can deny coverage in a situation like this?
Yes, it's true that I see the worst of it. But I'm a patient, too. This year, I fought with my insurance company about how much they were going to pay my gastroenterologist for my endoscopies, and whether they were going to continue to pay for my Protonix, which is one of the meds that is keeping my gastroparesis in check -- which means I need it to live. So I know this happens to everyone. Or at least everyone who has insurance. But how do these people live with themselves?
I suppose they think it's a job like any other job. And I suppose if they never denied a claim or tried to collect a debt, they would lose that job, and there would be yet another person in trouble. I sort of get that. But someone has to be accountable. And really, if it were the last job on earth, would I actually be able to do that job? I don't know. I'd like to think I'd rather go hungry, but if those were my choices, would I have the strength of my convictions and turn down a job that results in misery for others?
Thankfully, I don't have to make that decision.
I remember when I was a lawyer for the state and I got assigned to defend a challenge to the first round of "welfare reform." It was a huge case -- my first really big case at the Attorney General's Office. I struggled over it. Should I ask to be removed from the case because I disagreed so strongly with the state's actions? My friend John Brittain said no, that I should hold onto the case because, even though I would be making arguments that could hurt people, I could do it with more tact and judgment and heart than other people in the Office. And so I argued that this was a legislative judgment rather than a judicial one -- never once arguing that it was a good idea to cut welfare. When you compare my briefs in this case to the briefs filed on behalf of the state in our big school desegregation case, in which the lawyers really did try to defend the state's provision of inferior educational opportunities to minority children, you can see the difference. Or at least that's what I tell myself.
I also know that I had such a hard time defending the state in individual cases in which we were denying Medicaid, for example, that it didn't take long before my supervisors realized that I really ought to be a plaintiff's lawyer because I'm lousy at defending decisions with which I disagree -- and I ended up settling all of my cases as a result.
I don't believe I could deny a 14 month old baby the medicine he needs, especially if he'd tried everything else. The insurer is arguing that this medication is not FDA approved for inflammatory bowel disease, but that ignores the fact that there are only two drugs that are FDA approved for IBD in children, and NONE for which there has been adequate evaluation of children of such a young age.
And I don't believe I could deny medication for a 33 year old woman who wakes up with new limitations every day, again, especially if she's tried everything else.
And I know that, if I were making a collection call, and the person on the other end of the phone told me that the debtor was dying of an inoperable brain tumor, I would apologize for bothering him and wish him the best of luck. Job or no job. I just know that I could not pretend not to have heard this.
So yeah, wishes three and four are on my list. Maybe, if the people who make these decisions had to suffer themselves for even a little time, they would find a little more charity in their hearts for others. Jennifer
Friday, December 19, 2008
Dating Jesus is, in fact, about Susan's spiritual odyssey, but it's also a lot more. First, I knew very little about fundamendalism and how it differs from other Christian sects before reading this book. It turns out that the fundamentalism of Susan's childhood believes in a very literal interpretation of scripture -- it's sparse and spare and very technical. There was no dancing, no acknowledgement of sex, no indulgence, all of which can be hard for a kid who sees other kids living with looser rules. Early on, Susan embraced the structure in her life. She devoted herself to loving Jesus and trying to help others come to love him. She taught Sunday school as soon as she was allowed. She "knocked doors" (not knocked ON doors) to try to educate the unenlightened. And she didn't mind having a good excuse to avoid the fear of communion with the other gender in ways other than playing sports.
But also early on, Susan noticed that there were limits to what she was allowed to do within the church because she was a girl. By about 9 years old, she had started asking questions. This fascinates me because that's about when I started asking the same questions, and for me, it had nothing to do with being a fundamentalist. I'm Jewish, and was raised in the reform tradition, which has very loose rules. But I was required to go to Sunday school and Hebrew school, just like my brother. Although I had no intention of being bat mitzvah'd, my parents insisted that I attend these classes. I remember one big fight I had with my Sunday school teacher about the role of women and my belief that a just and benevolent god would treat all people as equals. And I remember that, when I hit age 13, I insisted that I no longer be required to attend these classes -- if I were a boy, I'd be bar mitzvah'd at that age and would then not have to keep going to class, so why should I have to go any longer than my brother would?
Is there something inbred in some of us that makes us question inequality? Susan in the Missouri Ozarks and me in overprivileged Long Island, New York; Susan a fundamentalist and me a Jew; Susan a tomboy and athlete, and me a guitar-playing hippie wannabe -- we couldn't have been raised more differently. Yet, something awakened in us both at roughly the same age. Susan has hit on something universal here that was both surprising and comforting to me.
But Dating Jesus isn't just about Susan's awakening as a feminist. It is full of insight into scripture, most of which is foreign to me since the scripture I know a little about is Old Testament, and Susan's goes way beyond the Old and New Testaments to secondary tracts. It's also full of insight into the role of women in religious life, and the way in which women's rebellion against second-class status in the religious context is intertwined with the feminist movement as a whole historically, beginning before the suffragettes. I've read lots of books about the women's movement, but I've never focused on the involvement the early feminists had in religious life. So I'm fascinated and enthralled with Susan's historical account. Familiar names like Elizabeth Cady Stanton in a different context than that on which I've focused in the past.
Although Susan's book taught me a lot of historical and religious information that I did not know previously, in the end, what moved me most is her personal journey. There is an incredibly funny passage in which Susan prepares to give a talk from the pulpit of a Congregational church, having been invited because of her Hartford Courant columns about religion and equality. Having left her church, Susan never wanted or expected to be delivering a sort of sermon from any church, even a more tolerant New England variety. She -- who is a very experienced and comfortable public speaker -- was scared to death of standing at the pulpit -- so afraid that she avoided responding to the invitation for several days, and then arrived two hours in advance, and cried at the song the choir sang before she got up to speak. This part of the book is laugh-out-loud funny, mostly because Susan is a very talented humorist and tells the story for laughs.
But the book packs a real whollop at the end, as Susan realizes what the fundamentalists got wrong in her view. A trip to Haiti, where Susan sees the poorest of the poor, the sickest of the sick, helps her to realize that the Jesus she really loves is the one who treated women as equals, who ministered to the poor and the sick, whose Christianity is about eliminating poverty, embracing lesbians and gays and all who are in any way different -- about love and forgiveness. And so it is that Susan realizes that she was simply dating the wrong Jesus. As I read the passage of the book where Susan makes this realization, I found myself crying along with her. Indeed, writing this now chokes me up. Susan is a deeply committed spiritualist who doesn't pick her fights carefully -- she fights them all -- and who loves Jesus's message of love, even though she no longer loves the church she grew up in.
I don't know if I would have been called to read this book if I didn't know Susan. But what is so exceptional about the book has nothing to do with knowing Susan. I don't remember the last time any book made me laugh out loud, or made me cry -- and I certainly don't remember the last book that made me do both. Susan blends her own story with so much information and knowledge that impresses me to no end. The balance and intertwining of the personal and the political -- an intermingling that, for me, IS feminism -- is pulled off with exceptional skill.
You don't need to know Susan to love this book, but reading the book will make you love Susan. It is intensely, unwaveringly honest and real and exceptionally smart. It's a must read.
And really, the "right" Jesus's message IS about our healthcare mess, as it is about all inequality. So although the book is not about healthcare, it's really about everything that matters, including healthcare.
Buy it. Read it. Thank me. Jennifer
Thursday, December 18, 2008
I founded Advocacy for Patients when I was too sick to leave the house, and I realized that my days as a traveling trial lawyer were over. I went onto to the internet to look for resources and ideas for myself, and what I found was a community of patients who were desperate for information. I started answering questions about health and disability insurance, Social Security disability, the Americans with Disabilities Act as applied to work and school -- a whole host of issues confronting the chronically ill. Once I realized I was answering the same questions over and over again, I wrote the first edition of what is now our Know Your Rights Handbook, which is now in its fourth edition.
Then someone I know was denied long-term disability and asked me if I would appeal for them. Then someone else was denied disability retirement. Slowly but surely, I had a new job. Then, of course, came the realization that I would need to be paid some day and I couldn't charge these patients, so I incorporated us and went through the process to get a tax exemption so that we could apply for grants and accept tax deductible donations.
Fundraising has been a far greater challenge than I thought it would be. How many senior attorneys give up a partnership in a law firm to provide free services to sick people, occasionally even saving a life? It turns out that, as a general rule, large funders don't want to fund an organization that reaches only 1000 patients a year. To me, 1000 patients a year sounds like a lot, but that's because I place great value on the cases we do that take 50 hours and span a period of months, whereas larger funders are prepared to fund less intensive work that reaches more people. So we are almost entirely dependent on donations, along with some small grants from the Connecticut Health Foundation, the Universal Healthcare Foundation of Connecticut, and Get Your Guts In Gear.
But the funding that put us over the top and allowed me to stop doing paying legal work on the side came from Mike McCready, lead guitarist of Pearl Jam, and his wife Ashley O'Connor. Mike has Crohn's disease, as do I. We met through Gloria Steinem, believe it or not -- Ashley mentioned that Mike has Crohn's and Gloria pointed them in my direction, as she is wont to do, being the world's best networker ever. While I was struggling to get Advocacy for Patients off the ground, Pearl Jam played Hartford, Connecticut (where we are located), and donated $1 per every ticket sold to Advocacy for Patients. Mike and Ashley founded Advocacy for Patients every bit as much as I did, and they continue to be great supporters, and have become treasured friends.
This March, we will celebrate our fourth anniversary. It's hard to believe that it's been that long. We now have a very hardworking Board of Directors, and we do a lot of work with the Crohn's & Colitis Foundation of America, the United Ostomy Associations of America, the National MS Society, and other specific disease organizations.
Now, we help a lot of people find health insurance despite pre-existing conditions, and we do health and disability insurance appeals. We answer questions about Social Security disability and help people strategize. We assist patients to enforce their rights under the Americans with Disabilities Act, the Family & Medical Leave Act, Section 504 of the Rehabilitation Act, and other state and federal laws that help people with chronic illnesses obtain reasonable accommodations in work and school. And we constantly help people find resources despite a shrinking safety net.
In addition, as seems only natural, we do some public policy work. How could I listen to tragic stories day in and day out and not be involved in discussions of healthcare reform and, in particular, chronic illness management? This is especially true when I hear talk about managing patients as opposed to managing diseases, and I know we don't need to be managed. The whole notion that we want more health care than we need is absolutely nuts. As a chronically ill person myself, let me assure you that, if I could go a year without seeing any doctors other than my brother, I would be very happy, indeed! When we fight with a health insurer for coverage of a treatment, it's because we need it, not because we want it. And somebody needs to be saying that. It seems that somebody is me.
So that's the scoop on Advocacy for Patients. If you are reading this and have a few bucks to spare, we'd greatly appreciate tax deductible donations. If you are reading this and need our help, we're easy to find -- you can email me at firstname.lastname@example.org. And if you're feeling alone, don't. We're here and it looks like we're not going anywhere, so you never have to feel alone again. Jennifer
Friday, December 12, 2008
In a strange way, work is transgressive for me. It helps me to surmount my fatigue by giving me a reason, by getting my juices flowing. When a patient needs me, the energy is just there somehow. Sitting around doing nothing, I can't move. But when the phone rings and a mom is in tears because her child is sick and she's afraid, somehow the energy comes to me. It's never a battle when there's a cause; it's only a battle when I have time on my hands. And then, the fatigue makes it too hard to have any fun.
Somehow, I have to find a way to get it through my thick skull that fun is as important as work. Sure, helping people with horrible health-related problems is critical. Often, their needs are urgent and severe. But too much of the time, I wonder who will take care of me -- and the only answer to that question is and must be ME.
If I use my down time to go out with friends or shop or see a movie, then, I worry, I will not have the energy to work. But if work can be transgressive in giving me the energy to surmount my fatigue, why can't pleasure be the same?
This is very old and part of my family dynamic. Mom was flighty and irresponsible. Dad was responsible, and showed that by working all the time, including at home, with his drafting materials strewn about the dining room table. Early on, I decided to emulate my Dad in this respect. Indeed, I sort of had to; I had to help take care of my Mom from the time I was very young, when she would take to her bed with a migraine, or simply need to be entertained. I could not BE Mom and take care of Mom, so that left Dad as my role model.
Maybe it's time to be less afraid of being like my Mom. It's not as though I'm all of a sudden going to become irresponsible and flighty. But one thing she had right and my Dad had wrong: work is not everything. I should have fun once in awhile.
I think I am going to work on making fun as transgressive of my fatigue as work is. Except if I work too hard on it, it sort of defeats the purpose.
Shedding one's innate habits is difficult. But I'm going to keep trying. Jennifer
Wednesday, December 3, 2008
So I want to clarify, but I also want to talk about this with you. I get a lot of calls and emails from a lot of very sick people. At least once a week, someone says something to the effect of "I might as well pack it in," or "it's just not worth it any more." Indeed, more often, I talk to people who are taking heroic measures and putting themselves through a hell that I don't understand except that most of them have children and/or spouses, and I do think that changes things. But when a patient says something to me that I think sounds suicidal, I stop the discussion and ask them if they're serious. They have to convince me that they're not or I would feel compelled to act. Once, I called the police on a patient who emailed me a suicide note and then refused to answer the phone or email.
But what I understand -- and what every sick person who read my blog yesterday understands -- is that sometimes life is so hard and so painful that you need to know there's light at the end of the tunnel. It's not about suicide; it's about escape, relief, a way out. You just can't be this sick and walk around cheerful all the time, looking forward to yet another day of hell. And it is the case that every single day of my life is hell in some respect or another -- I am bleeding rectally, I go to the bathroom 15 times, I throw up, I have constant, unremitting abdominal pain, I am worn out, I can't sleep, I can't feel my fingers and toes, I have scars and blotches all over and cuts on my hands, and my hands and knees hurt unbearably. Every single f-ing day of my life. No exceptions. It is hell and then some. Thinking about the hell ending is not the same as thinking about suicide; it is thinking about relief.
So yes, I think of dying as my eventual relief. But am I suicidal? ABSOLUTELY NOT. I hope that was loud and clear enough. I AM NOT SUICIDAL. I am not even depressed. I'm terrified of what happens when I can't control the vomiting. I don't want that day to come any time soon, I swear. My friend Ellen vomits 30 times a day. If and when my turn comes to have that sort of life, I will not have energy to work. I may well lose my house and what little money I've saved for retirement (as if there's ever going to be retirement -- with this economy, I will never be able to afford it). I will lose my health insurance eventually -- even if I get Social Security disability, I will have to wait 2 years for Medicare, and in the meantime, I won't have $800 per month to pay for my health insurance premium. I will be like the people who call me for whom I have no answers. There is no relief, no solace in that kind of life. I can't bear to even think about it for very long, and every person I talk to who is in that place scares me to death. That will be me some day. It's not if; it's when. Gastroparesis will progress. And until you -- my father, my brother -- stand in my shoes, don't tell me that my craving for even a moment of relief is somehow wrong or worse, crazy. Until you feel pain in every single inch of your body all day every day, so badly that you can't sleep no matter how exhausted you are -- until you get what it's like to be this sick -- don't you dare judge me.
I do not advocate suicide, but I sure as hell advocate choice. I believe in the right to die. When my doctors agree that there is nowhere else to go, when everybody around me can see that I am literally starving to death because I'm vomiting and having diarrhea, when it's time to make the decision of whether to get a feeding tube, I should have the right to end my battle. I should have the support of family, friends, medical professionals. The law should give me that right. It doesn't right now, but it should. But ONLY when my physicians agree that there's nothing more to be done. ONLY when I have no life left to live. NOT NOW, NOT ANY TIME SOON.
So if my father and my brother were upset at yesterday's post, why am I writing about this again, at the risk of upsetting them again? When I started this blog, I committed to a level of honesty and candor about what it's like to have a chronic illness. I committed to having no secrets. What good is this to other patients if I pull my punches and pretend that I never ruminate on whether there's some way out? I don't know anybody who's as sick as I am every single day of her life who never wants it to end. We don't really want to stop living; we want to stop the pain. We aren't threatening or contemplating suicide; we are just begging for some relief. And if I don't talk about this aspect of chronic illness, then I am breaking my pledge about this blog and what it is and what I mean it to be.
I am not trying to inflame the family discord that resulted from yesterday's post. I have reached out to my brother, admitted that he and my father were right about my initial post, and tried to explain what I just said above. But if they -- along with my sister-in-law -- read that post the way they did, then I have to worry that someone else did, too. And I have to clarify because I feel a responsibility to say I AM NOT ADVOCATING SUICIDE. I AM NOT SUICIDAL. I am advocating a change in the law that will let me die with dignity when my time comes. I am advocating a situation in which, when my doctors and family agree that the time has come, I can safely and comfortably die. I am advocating for the same respect for my choices as I believe a woman should have when deciding whether or not to bear a child, or to have sex at all (rather than being raped).
Life is worth living as long as I am able to make it so. I do good work. I can't help everybody who comes to me, but I can help some of them. I try hard. I give all of myself. As long as I am able to make something good come of my suffering, I will. But when I no longer can do that, I hope that the law and everyone around me will respect my decision to alleviate my suffering in the only way that will be available to me at that time. This is not about suicide. It's not even about dying. For me, in the end, this is entirely about choice. Jennifer
Tuesday, December 2, 2008
The rest of the week-end was quiet, but too short. I slept a lot, but that means I lost a lot of time. I'm so exhausted -- Friday Tired, like my book title -- that a three day week-end just isn't enough.
Then came yesterday. I won a disability appeal I've been working on for months. It was a very, very stressful appeal because I've gotten to know and care about the patient, and I really thought there was a chance we'd lose. But we won. Haven't heard from the patient, but her husband's first reaction was to thank the doctors -- oops -- and me, of course. No, there is no of course. He was very gracious later, but the celebration that should have happened didn't.
And then I got a letter from my insurance company. They're no longer covering one of the two meds that keeps my gastroparesis in check. If I lose this med, I start vomiting, there may be no way to keep fluids in me, and without food or fluid, you die. That's when they will ask me to accept a feeding tube and I will decline. I know too much and have seen too much to put myself through that.
I called a lawyer I know who works for my insurance company and he's looking into it. I called the guy I hired to replace me at the Attorney General's office. He'll weigh in if we don't have an answer by this afternoon. I found a lot of Canadian websites where this drug is somewhat less expensive, but not cheap enough to afford on an ongoing basis. So here it is, this week's crisis. And I did nothing but sit here minding my own business, paying $800 a month for my health insurance, and doing my best to help other people solve their health-related problems.
Still, I can't get Joni Mitchell out of my head. Quoting:
It's comin' on Christmas.
They're cuttin' down trees.
They're putting up raindeer
And singin' songs of joy and peace.
I wish I had a river I could skate away on.
That's where I'm at. I "wish I had a river I could skate away on." I don't want to die -- I just want to hide. I want me and Emily and my house. I don't want to talk to anybody. I don't have anything left to give. I just want to skate away and not be noticed. Not die -- just escape to a place where the pain stops, and never stop to look back. Jennifer
Thursday, November 27, 2008
I just saw an inspiring news report of an 11 year old boy who was dying of leukemia and had just one wish: Feed the homeless. Word got out and people responded in droves, raising tens of thousands of dollars and a boatload of food in the last weeks of this young boy's life.
I'm not dying imminently, but I think about dying a lot more since my diagnosis with gastroparesis. I've had a great life, and it really doesn't make me sad to think about ending it; in fact, since I'm going to decline a feeding tube, and I know I eventually will get to the point at which I can't keep even fluids down, I have to have a plan for ending things when it's the right time.
But it's not the right time yet. My dream -- my goal -- my motivation between now and then is to make Advocacy for Patients with Chronic Illness self-sustaining. That means moving us out of my house and into commercial office space, and hiring another lawyer who I can train before I don't have the energy to do so any more. I've thought and talked about merging with another organization, but the right match hasn't come along yet (or I've found it but it hasn't found me yet!). So I am working on the assumption that I have to make this happen on my own.
Right now, our annual budget is about $175.000. That supports me and an administrative assistant, plus our expenses -- health insurance, electronic legal research, office supplies, postage, printing -- just the basics. We've taken over my house, but we don't pay rent or utilities or even phones. Our budget is lean. Still, in 2009, with the economy the way it is, I'm afraid we won't manage to raise even that much this year.
But I'm not giving up on my dream. That means raising an additional $100,000 next year, or a total of $275,000. That would cover the cost of renting offices, buying furniture and equipment, and hiring a second lawyer who is experienced enough to be positioned to take my place at the helm some day.
Here's why you should care. We are the ONLY organization in the United States that provides free services focused on chronic illness, including writing health and disability insurance appeals, helping people navigate the Social Security disability maze, negotiating with employers and schools to accommodate people -- children -- with chronic illnesses, and helping people find resources. Indeed, we do whatever we're needed to do and we never turn anybody away. We're not always successful, but I think everyone we work with knows that we put our heart into everything we do.
I'm not a cute 11 year old boy. I don't suppose word will get out that a chronically ill 50 year old woman started an organization to use her legal skills to benefit other chronically ill -- and now she's sick enough that she has to think about life after her life is over. So that means I really need your help. Can you help me get the word out? Doing this may take a lot of $5 and $10 donations. That's fine with me. However it happens, as long as it happens, my life will have been worth living. I will have left a legacy.
This is not a sad post. This is a call to action. There's no way I can do this alone. Will you help me? Please?
Just so you know, I've revised my will. Everything I own (except for family mementos, which will go to my nieces) will go to Advocacy for Patients if it still exists after I die. And I have dedicated my life -- every moment when I'm not in bed or at a doctor's appointment -- to my goal of making this organization self-sustaining. I'm doing everything I can. Won't you help? Jennifer
Wednesday, November 26, 2008
So why go? (There's a Pearl Jam reference there, for you PJ mavens.)
We sent out a holiday newsletter yesterday to which I received several really heartfelt and heartwarming responses. In it, I tried to answer the question: Why celebrate when we're sick and the economy is lousy and we're all terrified of losing our jobs and our insurance and even our houses? For me, the answer is: YOU!
It's impossible not to get down, especially during the holidays, especially this year with the economy creating such fear. I'm no pollyanna; I'm not going to tell you everything's going to be okay. It's probably not -- at least, not everything. I have down days and weeks like anybody with a chronic illness has.
But after we sent out our newsletter yesterday, I got a string of amazing notes from patients. Here's one: "You truly are an inspiration to those of us afflicted with chronic conditions. From the bottom of my heart, I wish you the very best this holiday season." And another: "You are truly a rare gem in this tough world..a very special kind lady. I wish you a warm. happy thanksgiving, and I thank you for you."
Sitting here at my computer, sick as a dog -- too sick to work outside my home these days -- I have found ways to touch people. I helped Jerry in Illinois find health insurance for her chronically ill son yesterday. I helped Mike in Washington get insurance coverage for an increased dose of his medication, and now he is well and expecting another child. I helped Tonya negotiate a plan of accommodation for her son in school.
I say this not to brag, but instead, to show you what can be done without leaving one's house, and what there is to be thankful for. I am so grateful for the meaning my life takes on as a result of the ways in which I am able to touch others. I am so fortunate to have found a way to make connections without stepping away from my computer.
And I promise you that, if you are a little creative, you, too, can participate in others' lives and receive the gift of thanks that giving brings. There is no greater gift. Jennifer
Monday, November 24, 2008
and the second is here:
The first one is autographed by Mike, Ed, Matt and Jeff -- Stone is mysteriously missing until you turn the poster over on the back and see the original drawing there. Frame that one with plexiglass on front and back and you have a real collector's item.
The only bummer is that I can't keep them both. Jennifer
I went to swim first thing as usual, and they were short a lifeguard, so rather than cause myself horrendous pain by swimming in the coolllllld pool, I gave up. Not a good start to the week.
I got a file this morning from a woman who thought she had no pre-existing condition waiting period and who, as a matter of law, does not have a pre-existing condition waiting period, but they imposed one anyway, and since she waited a year to do anything about it, it's going to be hard to fix. But she's right, so hopefully that will make the difference.
I'm thankful that it's a short week, even if I'm not exactly overjoyed at the thought of Thanksgiving itself. Imagine Thanksgiving dinner and you can't eat anything you have to chew. And you can't stand the smell of the food you can't eat. That is Thanksgiving dinner for a gastroparetic. I'm not looking forward to it, but I will see my nieces.
Anyway, not a terribly substantive blog post this morning, but I wanted to get us moving in our new home.
So welcome. Kick off your shoes. Stay awhile. Read the archive of our previous blog and start new with us in our new location. I'm excited to have a fresh start. Jennifer
Sunday, November 23, 2008
Bookmark it and come visit us often in our new home. Jennifer
Chronically Ill? A Lump of Coal
Posted on 09:58AM (EST) on 2008-11-18
Today's NY Times editorial page reviews the results of a Commonwealth Fund study that found that the chronically ill in America are less likely than their counterparts in Australia, Canada, France, Germany, the Netherlands, New Zealand, and Britain to get the healthcare they need. More than half of American patients went without care due to the high cost of care -- they skipped doctor appointments, did not fill prescriptions, and found that more of their time was wasted because records and test results were unavailable when needed.
Although the uninsured fared worst, 43 percent of those who had insurance skipped care because of costs. That's WITH insurance!
Those of you with chronic illnesses already knew this, of course. I've already decided that, in light of what my colonoscopy and upper endoscopy costs me out-of-pocket despite an $800 per month insurance premium, I cannot have scopes every year as I should do to screen for colon cancer, which is more prevalent with Crohn's disease and with a family history like mine. And I earn a respectable living. If I were working for $15 per hour, I could never even think about getting scoped -- ever.
Since this is information those of us with chronic illnesses already know through our experiences, why do I keep bringing it up here? Because if you don't speak up now, nothing will change. I don't know if things will change anyway, but I promise you that the noisiest folks are going to get the most attention in the new Administration.
So far, the car companies seem to have cornered the market on face-time with the powers that be, but think about this -- it's all about health care. Listen to the anti-auto-industry-bailout advocates. They are saying the US can't keep up with the Japanese and Koreans because US auto companies pay retiree health care. They want to avoid a bail-out and, instead, let the companies reorganize in bankruptcy, releasing them from their contractual obligations to those who labored for them for years with the promise of lifetime health care. Listen -- this is what they're saying.
In 1990, it was the economy, stupid! Now, it's healthcare, stupid! I've said it before and I'll say it again: if we don't get a handle on health care -- not just insurance, but how to contain costs and reshape our broken system -- we will not make our way out of this economic crisis without stepping over a lot of sick and even dead homeless people lying in the Main Streets to whom the politicians pay empty lip-service.
Every single one of you MUST TODAY write a letter to your Governor. TOMORROW, your state representative. The next day, your state senator. The next day, your members of Congress. Keep writing and calling and emailing until they get it. Unless we flood them with our stories, we become reduced to a one-page editorial in the New York Times.
Get this. The story of this study didn't even make the news page. It's on the editorial page. Because the way the chronically ill in America are treated isn't news.
How dare we in America, land of the free, home of the brave, sickest of the sick? Jennifer
'Tis the Season
Posted on 09:11AM (EST) on 2008-11-17
A couple of you (okay, one) told me that the link I provided to the bracelet that is being sold, in part, in support of Advocacy for Patients for Chronic Illness was just to the jewelry store, not the exact bracelet. That's because the bracelet didn't exist then -- but it does now! So here it is. I hope you like it. I says "Be the Change" on the outside and "Advocate 4 Health" on the inside. You can see both inside and outside if you click on the photo.
Other really great stuff for gifts that keep on giving can be found at the Hunger Site, Child Health Site, Breast Cancer Site, the Literacy Site, the Rainforest Site, and the Animal Rescue Site. All of those sites are part of the Greater Good Network. Their products are wonderful and very inexpensive.
Have other suggestions? Email me and I'll post them. Jennifer
A Step Back is Better than Taking No Steps at All
Posted on 07:54AM (EST) on 2008-11-17
Sorry to have been absent for almost a week, although we did have a really good couple of exchanges in my group folders. I wanted to talk about why I wasn't around last week, mostly because I think it may help others, however embarrassing it is for me.
I was vomiting at the beginning of last week. With my gastroparesis, if I start vomiting and can't stop, I will either have a feeding tube (not) or die. So to me, vomiting is an emergency. But I really didn't want to go to the ER, so my doctor prescribed phenergen suppositories. They worked great, except that they made me very nuts. I sent people emails saying things like: aosdnfpoiasdofgaishdg. No joke. I picked a really nasty fight with my father that left him literally in tears. I scared the sh*t out of my assistant. And I suspect I talked to a couple of patients when I shouldn't have done so -- emails, at least, I can find, explain, and apologize, but as best I can tell, there are two people who I spoke with, but I can't read my notes even to get their names straight.
I am brokenhearted for what I put my dad through -- that's for sure. Fortunately, he has found a way to forgive me, realizing that this was a drug reaction. At the time, he thought it was dehydration, but I've been dehydrated many, many times and never became a lunatic as a result. So I think it's the phenergen and he has accepted that.
Why am I exposing myself here? It made me wonder how often people have drug reactions that people around them don't identify as such. Indeed, I had no idea that I was acting strangely at all -- I felt pretty good, in fact. Now, if I ever have to take phenergen -- and if it's a choice between phenergen and dying, I'll choose phenergen -- I will expect the response. I will turn off the computer, not answer the phone, and know that I am going to be stoned off my gourd. I may even enjoy it!!! But the first time, I didn't know. And because I didn't know, not only I, but everyone around me, didn't know how to respond.
So the message here is that it was and will be right to take phenergen if I need it to stop uncontrollable vomiting. It is better than taking no steps at all when your other choice is to die. But when we take a drug we've never taken before, we should be conscious of how we are reacting to it. And the people around us who know we have taken a drug we have never taken before should think "drug reaction" at the first sign of odd behavior and consult a medical professional immediately.
In my case, once I got so stoned that I couldn't sit up any more, I finally went to bed and slept it off. Thankfully, the emails I sent were to people who know me. I have written all of them to explain that it was a drug reaction, and thankfully, they have understood, I believe. I have made amends to my dad and my assistant and my friend Jan, to whom I was nasty on the phone, too. The two phone calls I know I had that I can't track back to because I didn't write anything down that was coherent -- I'm ashamed and embarrassed and very sad that there are two people who needed help and didn't get it. But I have done what I can do to undo the damage. And I have learned an important lesson.
Maybe me sharing this shameful experience with you will help someone else. At least, that way, something good could come out of this awful experience.
It was a very hard week, and I still really feel terrible about my dad and my assistant and the two lost phone calls, as well as a new-ish colleague Kris, who I'm hoping really understood as well as she said she did. I think she does.
But Saturday, I spoke at Connecticut Children's Medical Center. At the end, one of the families came up to me and said they had heard me speak 2 years earlier and that I had changed their lives. They really said that. Their son raised his hand during my presentation and made a pitch for kids to learn to self-advocate. I almost cried.
I'm never going to escape bad days as long as I'm sick like I am. And sometimes the bad days will spill over to other people. But as long as I can teach one 14 year old boy the virtues of self-advocacy -- as long as I can change one life for the better -- then taking a wrong step once in awhile is better than taking no steps at all. Jennifer
P.S. - After I posted this, someone emailed me and asked why I am so open and aren't I afraid that this will hurt my business. Yes, I am afraid that this will hurt my business -- but, in the end, my business is helping patients, and if I'm not "out" about the things that happen to me related to my disease, then how can I encourage others not to hide in shame? I worry about the two patients I talked to when I shouldn't have been talking to anybody. I suppose a prospective funder who read this might think twice about funding us. But this is what Advocacy for Patients is and does -- we are public about chronic illness in an effort to make it more comfortable for others to be so, as well. For better or worse, that is what I've committed to do.
Get to Work!
Posted on 09:28AM (EST) on 2008-11-06
Dear President Obama:
Okay, you've been President elect for over 30 hours. It's time to get to work!
I read about who you're considering appointing to critical posts -- most notably, those that concern the economy and the two wars we are in, in Iraq and Afganistan. All good names, although more white males than anybody else. But capable and, in some cases, even brilliant. I'm a little worried about how in-your-face Rahm Emanuel -- who I like a lot, but I'm as far to the left as he is -- will do as chief of staff if you really want bipartisanship, but I trust that you will work that out. I think you are a very special person who has a set of unique abilities that I've come to trust and believe in. So I won't stick my nose in on your staffing decisions.
And I understand that the economy is the first battle you have to wage. I get that. What I want you to think about, though, is how intertwined healthcare and the economy are.
A year ago, we at Advocacy for Patients with Chronic Illness had more insurance appeals than anything else. Now, our most common request is for financial assistance and the sad thing is that there isn't any. If people are disabled, they can apply for Social Security, but because of staffing shortages, the backlog is so bad that people are waiting 2, 3, even 4 years for benefits. So if you're looking to stimulate the economy by growing jobs, how about staffing the federal government positions that provide the "safety net" for many disabled Americans?
People are losing their jobs, and because of entirely out-of-control insurance premiums, they can't afford to elect COBRA, so they lose their insurance. Then they stop taking their meds and going to the doctor because they can't afford them. They don't realize that, by allowing their insurance to lapse for more than 63 days, they are subjecting themselves to possible pre-existing condition waiting periods as long as 12 months when they finally do get a new job. People who don't have insurance and don't get medical care despite the fact that they have a chronic illness end up in emergency rooms, where we the taxpayers foot the bill. The cost of health care will rise with the number of uninsureds whose diseases get out of control because they don't get any care. You can't fix the economy without getting a handle on this.
You could start modestly. Congress passed the SCHIP (State Children's Health Insurance Plan) expansion bill a long time ago. It would ensure that most uninsured children and their parents who meet certain income requirements have "insurance" that may be subsidized, depending on their income. Taking this first step would just mean signing a bill that President Bush refused to sign -- no think tanks, no commissions to study the problem -- it's already done. You just need to sign it. Do it. Yes, you can.
There's also pending legislation to eliminate pre-existing condition exclusions and waiting periods, at least for group health insurance. Make it happen. Yes, you can.
The Americans with Disabilities Act Amendments of 2008 will take effect about 20 days before you are inaugurated. They contain the first recognition of chronic illness in American law by stating that episodic illnesses are disabling when in remission if they would be disabling when active. Extend this to Social Security so the caseworkers don't deny everyone who feels okay two or three days a week but can't hold down a job due to inconsistency in attendance and performance. That would speed up findings of disability so that people are not left with no income and no health care for years while waiting for a decision. Yes, you can.
Fold section 504 of the Rehabilitation Act of 1973 into No Child Left Behind, giving NCLB some teeth. Instead of kicking kids out of school because they are too sick to meet the NCLB attendance rules (yes, this is happening), accommodate them and make sure they can get an education even if they have to learn from home some of the time. We surely have the technology to link sick kids up to their classrooms. Let's make that happen. Yes, you can.
These are baby steps that don't solve the problems of the uninsured and the challenges facing the chronically ill. But they are first steps. You can ease some suffering with these steps. Yes, you can.
There are even some things you can do that Republicans would like, like giving tax credits to employers who allow chronically ill employees to work from home if they have a job that they could do remotely. You can make at least some pieces of health care reform bipartisan. Yes, you can.
I believe in you. You can make things happen. Give people jobs on public works projects so they have health insurance. Hire working chronically ill and/or disabled people in government jobs that allow some flexibility in work location, hours, and even productivity.
But don't think that you can fix this economy without fixing the health care crisis in America. As much as I respect and admire you, no, even you can't. Jennifer
More on Blogging
Posted on 05:32PM (EST) on 2008-11-04
I got my first hate mail today. I got called a "freaking cow," a "misguided slut," "a bitter old hag," and finally a "f*cking cow." Barack Obama was referred to as "Obacka Binladen," and, of course, despite the fact that I had focused my endorsement of Senator Obama on his and Senator McCain's health care proposals, I was told that I should keep the "pretense of caring for people" off the internet. Hmm.
I thought about posting the whole retort here, along with the author's name, but decided to be bigger than he. I did forward it to the Revolution Health powers that be, but perhaps I was wrong to endorse a candidate here, even if I did it based on their positions on health care. And I did it on the night before the election so it wouldn't be there for a long time. And my critic surely could have posted a response had he chosen to do so. But instead, he decided to call me a cow and a slut. What does that make him?
If I offended anybody, I'm truly sorry. That was not my intent. A blog is, by definition, a statement of opinion. Revolution Health has all kinds of disclaimers so if I say something stupid, it's on me, not them. In stating my support for Senator Obama's health care plan and, thus, his candidacy, I never cursed, I never accused Senator McCain and his supporters of any sort of misconduct, I never maligned anybody -- I just stated my opinion, as educated and illustrated by the work I do. Is it really even possible that you all hadn't already figured out I'm a Democrat before I posted last night? Why not just post a statement of disagreement, telling all of us why Senator McCain's health care plan really is better?
I am entirely capable of being as foul-mouthed as the next guy. If you cut me off in traffic, I'll flip you the bird or spew a line of four letter words. But to send a stranger an email calling her names? My thought is that John McCain would not approve of this person's defense of him.
I have a friend who writes an opinion column for a newspaper. She gets a lot of hate mail. She pretty much laughs it off, although at times I've wondered how it could not be hurtful to her. I've tried to shake this off all day. But the truth is that I really care that someone could think that I -- who spends 24/7 giving away free legal help to patients in need -- am not sincere in how I feel about the people I help. Were I not sincere, I'm sure I could find an easier, higher paying job.
Oh, well. I guess you just can't please all of the people all of the time, or something like that. I don't mind disagreement. But did you really have to call me a cow and a slut? Did that really help to demonstrate the merit in your opinion?
Tonight this election will be decided. Either I or my critic will be happy, and the other will not. In any event, I suspect we both will move on. Jennifer
Posted on 05:53PM (EST) on 2008-11-03
This isn't a political blog, so I won't go on against how John McCain would mean the one vote needed on the Supreme Court to overturn Roe v. Wade (although I'd prefer a Vice President who can name a Supreme Court case other than Roe v. Wade). And I won't go on about the many shortcomings of Sarah Palin and how much her selection tells us about John McCain. I won't foist my liberal (yes, the "L" word) views on you. All I will talk about is health care.
I asked someone else today with a chronic illness how they can even contemplate voting for John McCain. She said there are other issues. Not from where I sit.
Not only am I sick, but I am seeing tragedy every day that is unspeakable, that should never happen in America. People get laid off, can't afford their COBRA premiums, and so they let their insurance go. Bye-bye coverage for your pre-existing condition, at least for a good long while. Every day, I get a call from someone who's car has been repossessed, whose house is in foreclosure, who's deathly ill but afraid to ask for accommodations because they might get fired. Every day, there is unspeakable tragedy.
It is my fervent, personal belief that only one of them really cares about us: Barack Obama. And thus, I hereby endorse Barak Obama as the next President of the United States.
But McCain is going to give us all a tax credit so we can buy the insurance we want, right? Well, what if you have a pre-existing condition? Is the McCain plan going to guarantee that there's a plan available to you? Because a tax credit does me no good if I can't find insurance to buy, and I haven't heard him say that he'll make sure there's insurance available to all of us that can be bought for the $2500 tax credit he's going to give individuals and $5000 he's going to give families.
But, you say, Obama's going to make insurance mandatory, which is going to hurt individuals and employers alike. No. He is making insurance mandatory for children only, not for everyone. And if you're happy with the insurance you have, then you get to keep it, although it will cost you less under his plan. If you're unhappy, you'll have the right to buy into a plan like the one that covers federal employees -- imperfect, but better than nothing. At least with Obama, if you want insurance, you can get it, pre-existing condition or not. To me, that's issue number 1.
But, you say, who's going to pay for people who can't afford insurance premiums? Who do you think is paying now when an uninsured person goes to an emergency room? That would be you, the taxpayer. We pay for free clinics, too. That's your tax dollars at work. Wouldn't it be better if everybody had insurance and we could do all this in an organized way, making sure that people who don't have insurance really can't afford to pay that bill?
I honestly don't understand how anybody with a chronic illness could not see this. Our lives are the same or worse under Senator McCain and better, for sure, under Senator Obama.
And I do care about reproductive health and the economy and war and our standing in the world and race and women's rights and civil rights in general, all of which fare better in an Obama administration.
But even if we set aside everything else, if you're sick and you don't vote for Senator Obama, mark my words -- you will be sorry. The tax credit -- if our country ever can afford it -- will get you nowhere if there's no health insurance you can buy if you have a pre-existing condition. In the meantime, unless the economy turns around, more people will lose jobs and, with jobs, their health insurance. The ranks of the uninsured will rise. If I'm broke, a tax credit does me no good. And whose insurance costs $2500 per year anyway? Mine costs $9600 per year just for my premium, so what good does a $2500 tax credit do me? Does it help me pay for a needed surgery? Does it may my deductibles and copays?
Obama gets health care like McCain gets . . . Palin? War? I'm not sure I think he really gets anything, but I'm very sure he doesn't get what it's like to be sick. And we need a President who does. Simple as that. Jennifer
Posted on 05:31PM (EDT) on 2008-10-31
Everybody has a blog, I know. I've really enjoyed having this one. But there's something strange about people knowing things about you that you never told them. I see someone I haven't seen in awhile and start to catch them up on my life, and it turns out they already know everything there is to know about me!
So if you're reading this and you know me, and you run into me and I start telling you my news, could you please pretend that you're hearing it for the first time? Jennifer
The Essential Safety Net
Posted on 07:09AM (EDT) on 2008-10-29
This past week-end, Advocacy for Patients with Chronic Illness displayed at a Health & Wellness Festival at the Hartford Convention Center. It was more Wellness than Health. Billed as a free, family fun event, the Festival drew mostly healthy families looking for entertainment. Watching people voraciously grabbing handsful of pens, nail files, and tote bags was somewhat off-putting. The economic crisis has turned us into hoarders.
The economic crisis scares me tremendously because I can already see its effects on Advocacy for Patients. Typically, when we win a substantial case for a patient, we receive a donation -- sometimes small, but a donation nonetheless. Not now. Now, the economy has everyone scaling back on non-essentials. As if the work of nonprofits is not essential.
In fact, in bad times, the non-governmental aspect of the "safety net" is even more essential than it is in good times. It is nonprofits that run homeless shelters, free medical clinics, and food banks. We play a critical role especially in bad times, finding scarce resources to keep people afloat. Since most of us are a paycheck away from needing assistance, it is critical that we give to nonprofit charities when we can.
If we fail to fund the work of nonprofits, resources will dry up. Indeed, they already are doing so. The website that was the best tool on the internet for learning about health insurance options in each state has been down for a couple of months because the Georgetown University Health Policy Institute lost funding for the website. The pharmaceutical companies already are making noise about how expensive it is becoming to provide free medications to patients without insurance who meet income standards.
If we as a society fail to support nonprofits who provide services to the needy, the sick, the disabled, we will have more than an economic crisis on our hands. We will see a great increase in homelessness as foreclosures proceed at record pace. We will see an increase in the unemployed and, thus, the uninsured, who will sit for hours waiting for care at an emergency room because they have no alternative. The further people fall, the greater the cost to society. The work that nonprofits do to try to stem the tide of desperation is more essential than ever when the economy takes a downturn.
So if you think charitable giving is a non-essential, think again. How many pay checks away from disaster are you? If you were laid off, how long could you afford to pay your COBRA premium before you would have to be looking for free or low cost health care? What would you do if you couldn't get your medication?
Now, don't wait for the crisis to hit you. Give while you can.
There are creative ways to give. Instead of buying a child a toy for Christmas, how about going to the Child Health Site and buying a pair of shoes for a child in Africa in your child's name? Instead of buying just any piece of jewelry, go to the Giving Tree Gallery and buy one of the items they sell to benefit charities -- Advocacy for Patients will be their November charity of the month. Even if you can't make a financial contribution to a charity, you can do your holiday shopping with charity in mind -- and in your heart.
But don't think that the work we do at nonprofits is non-essential. It is absolutely critical to the well-being of those less fortunate -- and some day, that could be you. If you believe that there but for the grace of whomever/whatever go we all, then you know that your good fortune is both lucky and fragile. Don't count on it. Give when you can so that the "safety net" will be there when you no longer can give.
These are tough times. Before this economic crisis is over, a lot of people will suffer. If you are not one of those who have suffered a significant loss -- yet -- please consider investing in a tax deductible charitable donation to an organization that you may need sooner than you think. Jennifer
The Story of Ron & Diane
Posted on 12:23PM (EDT) on 2008-10-23
Ron and Diane of Davie, FL (Broward County) both are disabled. Ron is on SSDI (Social Security Disability Income) that pays $1083 per month. They also are on a health plan through Broward General Medical Center, which means nobody else will see them.
Diane is on a feeding tube. She weighs approximately 79 lbs. She needs surgery and there is a doctor in Miami who can perform it, but since they can't go outside of Broward County, they are nowhere. The doctor in Miami won't do the surgery until she gains some weight. She needs a pump for her enteral feeding, but Broward County won't provide the pump, nor will Broward General administer inpatient IV feeds, which is the doctor in Miami's preference.
Ron tried to get Social Security for Diane, but they were rejected. Diane didn't pay FICA tax into the system long enough to get SSDI, so their only hope was SSI, which would get her Medicaid. The hitch is that Ron's SSDI is over-income for Diane to get SSI. It is over income for Medicaid. It is over income for charity care at a Miami hospital. It's under $1100 a month and they're over income for everything.
So two disabled people can't both get Social Security. Ron considered stopping his SSDI so Diane could get SSI, but he has diabetes and kidney problems, and they couldn't afford his care if they did that.
So Diane is hanging on hoping that something changes. They have contacted state reps and their members of Congress, who told Ron to hope Obama gets elected because there is nothing to be done for them now. Diane may not live to see Obama sworn in if someone doesn't intervene. They contacted local media and were told there was nothing they could do.
I've been working press on this, and my good friend Jamie Diaferia of Infinite Public Relations has, too, for a week. The Miami Herald said maybe later. There is no later for Diane.
This is not just about Ron and Diane. If two disabled people live in one household and one is on SSDI, the household is over income for any other benefits. Jill and her daughter Juliette are in the same boat. Juliette may have to move out of her parents' house and live alone, sick as she is, in order to get SSI and Medicaid. There must be thousands of others in the same boat.
This sort of insanity must be eradicated. The bureacracy must be able to make exceptions in cases of pressing need like this one. If you live in Florida, call your legislators and media and demand that they tell Ron and Diane's story, and that they get the help they need. If you live elsewhere, tell anybody who will listen about this gap in the so-called safety net.
Remember. Today it's Ron & Diane, Jill & Juliette. But tomorrow, it could be you. Jennifer
Posted on 05:45PM (EDT) on 2008-10-22
I haven't posted in a bit because I haven't had anything remarkable, good or bad, to say. I've just been working very long hours, and when I'm not working, I'm trying to rest up. I have to work all this coming week-end at a health fair answering questions and selling books (I hope), and again part of next week-end. So I've just had my head down, plowing through, trying to make it through the next couple of weeks.
But I just read that someone I know and like very much has cancer. She's very young and has a young daughter. She will need a liver transplant, and that's best case scenario.
Since my diagnosis with gastroparesis, several people have asked why bad things happen to good people. I don't think of my diagnosis in those terms at all, and it's hard for me to connect to that sentiment. I am old enough. I've had a great life. I live comfortably. Sure, I hate being sick. But there are worse things.
This is worse. And so I have to ask why such a horrible thing should happen to a lovely young mom who never did a thing in her life to deserve this.
We've all read that book Why Bad Things Happen to Good People. I'm not impressed. There's no answer and I want one. I want to understand why life messes with people who are just minding their own business, not hurting anybody, not deserving of such a huge obstacle. And having been sick myself, I know that she will suffer terribly as she is in the clutches of the medical establishment for the next several months, while procedures are done and tests are run to ensure that she is a good candidate for a new liver. It's a nightmare, even if the result is all good. It's not something I'd wish on even my worst enemy.
And it makes gastroparesis seem like a walk in the park.
I think I'll go snuggle with Emily (the cat) and try to get some nourishment into me.
But g-d, if you're listening, could you please explain this to me?
Take me -- don't take her. Not yet. Not now. I beg of you. Jennifer
P.S. - I'm back. I had to log back on. The more I think about this, the angrier I get. Why the heck do things like this happen? Why is my sweet "sistah" (by choice, not blood) in agony and looking ahead towards another big surgery? Why did another dear friend have a seizure and hit her head on a bathtub (she cracked the bathtub, not her head) when she already has MS and Crohn's and gastroparesis -- seizures? Why, dammit?
Posted on 07:43PM (EDT) on 2008-10-14
As many of you know, not only do I run Advocacy for Patients with Chronic Illness, Inc., but I'm also very slow to take "no" for an answer.
A few weeks ago, I spoke with a young woman in deep despair. Her insurance company wouldn't pay for her tube feedings and she lives in a two-story house and could not carry the pump up and downstairs all day long. She was ruminating longingly at the thought of a small, portable pump, so I said why not try just asking for it? She thought I was nuts, which I am (mostly in a good way, I hope), until I told her about my Brad Pitt story -- about how a patient was near death and, to make a long story short, I got Brad Pitt to call her and ultimately fly her out to LA where she hung out on the set of Friends and met Jennifer Aniston and George Clooney and the whole deal.
So I wrote a letter to Moog, Inc., which makes nifty little portable enteral feeding pumps. I begged for one for this young woman. They called and my heart raced as Karen asked me to tell them a little more about what we at Advocacy for Patients do. I sent her an email with additional information and a copy of our tax exemption letter. She also wanted to know how the patient was going to pay for the supplies, so I told her about the Oley Foundation and stressed that anything would be better than what they have now. And then I waited.
Karen called today. Moog Medical Devices is donating not one but two pumps so even the little portable one doesn't have to be dragged up and down stairs. And they're throwing in two months of supplies. FREE!!!
I just spoke to the patient's husband. The patient had a hard day today, spending it at the hospital because her feeding tube got turned around and was trying to attach itself in the wrong place. But her husband was giddy at the news. There is nothing about this work that compares with telling a patient when you hit a home run for them -- nothing.
I wrote the President of Moog Medical Devices, Martin Berardi, or St. Martin as he will forever be known to me. I told him that, since I have nothing to offer in return, I would pay his generosity forward. This week is Martin Berardi Week at Advocacy for Patients. Everything we do this week, we do in Mr. Berardi's name.
In a lousy economy, with uncertainty abounding, and insurers doing all they can to avoid paying what we're paying them for, there's a man out there named Martin Berardi. He just gave a young woman way more than an enteral feeding pump; he gave her and her husband not just reason to hope, but reason to BELIEVE.
Please, everyone who reads this, please do one nice thing for another person this week in the name of Martin Berardi. Jennifer
P.S. - Mr. Berardi doesn't know I have a blog and asked for no public recognition.
The Candidates on Health Care
Posted on 11:06AM (EDT) on 2008-10-08
I've received several emails asking me about the candidates' position on health care. So although I intended to keep politics out of this blog, I thought I would just do my best to give you the info without editorializing.
John McCain says he is giving a tax credit for people who pay their own health insurance premium. It wil be $2500 for individuals and $5000 for families. That would cover an individual's premium in the amount of $208.33 or a family premium in the amount of $416.66 per month. I don't know about you, but my premium is $800 per month or $9600 per year. A $2500 tax credit doesn't do a whole lot for me.
And here's the part of his plan that he doesn't talk about much. For those of you who don't pay your own premiums because your employer pays on your behalf, McCain would tax the value of those premiums as income. So the $9600 that my employer pays for my health insurance would be taxed as if I got the money in my pocket.
Obama's plan is not perfect, but in my view, it is better than McCain's. Obama would leave the employer-based system as it is for people who are happy with it, and he would let people buy into a plan that's like the plan afforded to members of Congress. There would be no pre-existing condition exclusions. Every child in the United States would be covered. Adults would not be required to get insured, but there would be a solution for everyone who wants one.
Obviously, I prefer Obama's plan to McCain's. It will provide insurance to the uninsured. It is not perfect, but everybody who wants insurance -- pre-existing condition or not -- will be able to have it. My understanding is that there will be a system of subsidies for people who can't afford the full premium, as well.
For details on both of these plans, you should read for yourself. Learn more about McCain's plan here, and Obama's plan here.
I'm starting a discussion folder in my group on this subject, so come on over and let's talk about it. Jennifer
I think I may be depressed
Posted on 04:32PM (EDT) on 2008-10-07
As most of you know, I pride myself on being upbeat, making lemons -- my chronic illnesses -- into lemonade, like starting Advocacy for Patients with Chronic Illness to help people who need my help. Rarely do I feel really depressed. Sure, there are bad things that happen and make me sad, but I don't often feel just plain down.
I guess today's the exception, then. I'm mad at myself for letting some unfeeling people get to me. They emailed me and said "you're not dying, you can have a feeding tube," as if (1) I said I was actively dying, which I'm not any more than we all are; and (2) I somehow was breaking a rule or being duplicitous by choosing not to have a feeding tube. Will I die from gastroparesis? Maybe some day. If I don't get run over by a truck first. But it's not like I've been walking around telling people I'm dying and expecting anybody to feel sorry for me.
I'm mad at someone who supposedly loves me who doesn't have a problem with these sorts of accusations being leveled against me. She should be supporting me.
I'm mad that . . . everything. Life just goes on for everybody and mine is stopped dead. I have no options left. Working full-time out of the house would be impossible. Working full-time for other patients is killing me -- it's 15-18 hours a day every day. Working part-time is impossible, as is disability -- I would not be able to pay my bills. But I can't go on as is. But I have no choice. I'm mad as hell.
Ruth Mohr said depression is anger turned inwards. So all this anger gets turned inwards and I am experiencing it as depression. I know that. It doesn't make it easier.
I spent weeks applying for liability insurance for Advocacy for Patients. I knew it would come with mistakes and it did.
I need to change the beneficiaries on my mutual fund. They want me to jump through hoops. I think I'll just take my money, thank you very much!
And on and on. It just seems like everything is wrong, is messing with my head, is unfeeling, is cold, is mean. I spend my entire life trying to make things better for other people. Who makes things better for me?
I got a letter today from a Crohn's patient in prison for life. I will work late answering his question.
WHO HELPS ME???????????????????????????
Posted on 05:48AM (EDT) on 2008-10-02
Yesterday, I finally had my visit with a local gastroenterologist who's also a licensed dietician to talk about how I can make sure to get good nutrition without eating solid food. It was very helpful. I'll share some of what she said.
She said eggs are the best form of protein -- I knew this. But she also said that whole milk is more complete protein than soy milk -- exactly the opposite of what I thought. Indeed, she eats no soy at all -- she said it stimulates the production of estrogen, which can lead to breast cancer? First I ever heard of that, but she's the expert and I'm definitely not. Still, I think I'll do a little reading before I toss all my soy protein powder! (NOTE: The American Cancer Society says there may be a link between soy and estrogen-positive breast cancer. Well, I'll be.)
She also said that, if you take in no carbs, your body converts protein into carbs and you can end up with less than enough protein. So, she said, it's critical to eat fruits and vegetables. For me, that means baby food. So I ate baby food sweet potatoes and carrots for dinner last night. It didn't taste bad, but it's still sitting where it was when I went to bed last night!
It appears, though, that I'm essentially going to be a vegetarian, which is something I embrace. If I could cut out sugar as easily as I've cut out meat, I would actually get to be a good weight, and would be healthier than I've ever been before.
It's so ironic that it's all about food in the end. I've been obese since the day I was born at 9 pounds 12 ounces. I've strugged with my weight for as long as I can remember. When I've been well, I've gained weight and remained obese. However, during several bouts of serious illness, I've lost weight precipitously. When I was first diagnosed, I'd lost 80 pounds in 3 months. When I was stuck in the house from 2002 to 2005, I lost about 60 pounds. And when the gastroparesis really kicked in, I lost 40 pounds.
My weight has been stable for the past month or so, but it's because I do eat junk -- jelly beans melt, so I can digest them, and frozen yogurt, and 100 calorie packs of just about anything from cupcakes to pretzels (although I'm not digesting pretzels very well). If all I ate was a soy chai latte, a protein shake, and some soup for dinner, I'd be losing weight too fast. Yup -- the doctor's looking at someone who's about 80 pounds overweight and worrying about making sure I get enough calories!!!
I suppose it's all about balance -- the arch nemesis of addictive people like me! But I stopped smoking cold turkey. I've been on pain meds for exended periods of time and just stopped when I didn't need them any more. So maybe the next frontier is sugar. I surely would be healthier for it, and if I can eat baby food fruits, which are very sweet, maybe that will satisfy me.
It's all come down to food, then. There isn't much medicine can do for gastroparesis, but food will make or break me. But I will have to make the transition of thinking about food differently, as medicine, as fuel for my body, not as something that gives me solace and satisfaction. I think it's time to break the sugar addiction and take nutrition seriously. I will be healthier, no doubt. I probably will have more energy. And I will lose weight.
As my friend Jay would say, it's all good. Jennifer
Posted on 05:34PM (EDT) on 2008-09-29
Tonight marks the start of the Jewish New Year celebration. I wish you all a year of . . .
If one more person wishes me a year of good health, I'm gonna hit them. I have two chronic illnesses, one of which is progressive. I can't digest solid food. What are the chances this is going to get better? None.
So what do I wish you, my chronically ill friends? There is so much more than health.
I wish you creativity, so that you can reinvent yourself whenever limitations imposed by illness get in your way.
I wish you a furry friend as loving as my Emily (the cat).
I wish you activities that are fulfilling, that allow you to feel your full power, like writing and speaking and singing.
I wish you a world that understands chronic illness, that does not say "well, you look great," and that allows you to feel fulfilled within the limitations your disease imposes.
I wish you friends who embrace a relationship that may be limited to phone and email.
I wish you as many tomorrows as you want, and no more tomorrows than you can bear.
I wish you the ability to focus on the painting -- what you can do -- and not the frame, the limitations your disease imposes.
I wish you a heart full of love.
I wish you a beautiful sunset, a magnificent flower, a bluebird on your windowsill.
I wish you the fullest life that life has to offer you.
I wish you the choice of how you live and how you die.
I wish you hope if you need it and the absence of false hope.
I wish you advances in medical science, technology, ways to make yourself comfortable and not in pain.
And most of all, I wish you peace with your illness. I wish you contentment with what you have, and acceptance of your limitations. These are the ways to peace.
L'Shanah Tovah. Jennifer
Posted on 04:20PM (EDT) on 2008-09-22
My dear friend Iris Coon passed away early this morning. She was a fixture on www.ibdsucks.com. Everybody called her Mom because she treated us all like her kids -- whether that meant scolding us or hugging us or quietly just taking care of us -- no fanfare, no credit.
Iris was President of the IBD Quilt Project, which is one of the wonderful patient-driven projects to grow out of ibdsucks.com. IQP, as it is known, collects squares made by or for patients and joins them together into quilt panels that are displayed at events nationwide.
I met Iris in person (as opposed to on ibdsucks.com, email and phone) at a Crohn's & Colitis Foundation of America IBD Day on the Hill. She'd come with one of the other IQP officers whom you've all seen post comments here, Sari Legge. Iris adored Sari -- complained bitterly about her smoking and talking and sleeping positions (they were sharing a bed) but absolutely adored her. That was Iris -- she saw us all as we were and loved us anyway, or perhaps even because.
Iris named Get Your Guts in Gear, the bike rides to raise money for IBD-related causes. Iris embraced my Advocacy for Patients with Chronic Illness -- one of her last official acts as IQP President was approving a donation from IQP to Advocacy for Patients. Now, I wish I'd just framed it.
You more than miss people like Iris. You carry her with you forever. She had a joke about everything. Every word out of her mouth was kind-spirited and funny. But she sure was serious about caring for those she loved, her "kids," both real and the hundreds she "adopted" on ibdsucks.com. We're all sort of at a loss today. None of us can get much work done. We feel like we ought to be doing something. The memorial service is not until Sunday. It's hard for some of us to sit still that long. But we would do anything for Iris.
And for me, what I need to do today is to thank whomever -- g-d, a higher power, the goddess, fate, whatever -- for bringing Iris into my life. When I called to tell her I loved her last Friday, she was so happy to hear it was me on the phone. Even at the end, she was giving us gifts. And so she gave me many. I will miss her -- I already do.
But I know she'd give me a kick in the butt and tell me to go help some people rather than sitting around feeling sad. And so I will. For Iris. Jennifer
Posted on 09:26PM (EDT) on 2008-09-18
Yesterday, Congress passed the ADA Amendments Act of 2008. It is nothing short of a HUGE victory for the chronically ill. The main points are as follows:
- Courts must interpret the ADA more broadly than they have been doing.
- The phrase "major life activity" includes, but is not limited to, caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, learning, reading, concentrating, thinking, communicating, and working.
- The phrase "major life activity" also includes operation of "major bodily function, including but not limited to, functions of the immune syste, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions."
- An impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.
- The question of whether an impairment is disabling must be made without regard to whether medication, equipment, prosthetics, assistive technology, or other treatment, devices, and supplies improves the impairment, although eyeglasses still are considered for determining the severity of a vision impairment.
Get this: An impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active. That's the whole ball game for us. Chronic illnesses are disabling even if and when they're in remission!!!!
So where's the party? Because this is the most important, exciting thing that has happened for the chronically ill in as long as I can remember. And this could lead to more of the same -- maybe Congress will tell Social Security that chronic illness is disabling for their purposes, too.
But even if it stops here, we have finally been noticed. Somebody heard us. I am literally crying tears of joy.
What a wonder, after all this fighting, finally to be heard. Congratulations to you all. Jennifer
To Sleep . . . Perchance to Dream?
Posted on 07:55AM (EDT) on 2008-09-16
I'm amending my earlier statement that a chronically ill person needs three things: a computer, a cat and a book to write. Add number four: a good night's sleep.
Last night was the first night I've slept without interruption since I prepped for scopes on September 7. That's 8 nights having to get up to go to the bathroom every hour on the hour, or close to it. I slept some over the week-end, but not uninterrupted. It's just impossible to function that way. I feel like a massive fog has lifted. I don't know how long it will last -- my gut is still pretty miserable and nothing big has changed.
But I feel like there's some possibility of enjoyment today. I don't feel like I need a crane to lift me up and hold me in my chair because all I want to do is lie down and sleep. I'm not cured or anything, but I just feel that sense of contentedness, that other than my illness, I am doing good with my life, and that makes me feel like it's worthwhile.
Whatever all those scientists say about needing sleep is right. It's essential. It's the only way anything good is possible.
I feel new. That's a good thing. My problems are still my problems. My health still sucks. But today, I can face it. All it took was a good night's sleep. Jennifer
Posted on 09:30AM (EDT) on 2008-09-15
I've tried in this blog to be balanced. Part of my life as a patient with a chronic illness sucks beyond measure; but part of my life as a patient advocate is joyful, when I am able to help someone even feel just a little better. I don't know who could have been more upbeat about surgery. And other posts -- cat, computer, book to write; can-do chronically ill -- have been unabashedly positive. Even when I've been sad here, I've tried to be strong. I worry that, if you all see me fall apart, you won't feel you have a place to come where you can get support if you need it, or help, or legal advice.
So this is a chance I take, being open with you about how badly it sucks being me, today at least.
If I go to the bathroom one more time (which I surely will), I am never eating/drinking another thing as long as I live. If one more medical office sends me 3 pieces of paper when I've asked for an entire chart, I'm quitting. If one more donor says no, I am . . . . I'm stuck here because I couldn't take a job even if I wanted to quit Advocacy for Patients. I'm too sick to be working outside my home. I've waited for 5 years to be awarded a judgeship -- I was certified as qualified five years ago, but the Republican Governor refuses to appoint me, and who can blame her -- I have worked hard to "fix" (in her mind, destroy) her new health care plan, and that and my other activism over the years means I might not get a judgeship ever -- AND to make it worse, it's not clear that I could get out of the house every day, even keeping judges' hours and writing and researching at home. My dreams are as dead as my stomach muscles.
I am feeling such loss. What I'm struggling with now will never go away. I ate too much on Saturday -- I had a bowl of cream of wheat. It is sitting in my stomach like a load of cement. I've eaten nothing else in 3 days and I feel disgustingly full, but I also feel weak because of not eating. Where is the balance? I guess cream of wheat isn't part of it.
I don't want you to take this wrong. I am NOT suicidal. If I were going to hurt myself deliberately, I'd have done it already and saved myself today and yesterday and the day before -- every one of these intolerable days when life is NOT worth living and all I have to cling to is hope for tomorrow -- but that hope is bull. I will never eat again. I'm not hungry, so that's not the issue. It's just another thing I can't ever do again.
I can't play my guitar and sing because the Crohn's-related arthritis in my hands is too bad.
I can't go to a restaurant with friends -- it's been a challenge for years, finding something on the menu that is in my Crohn's diet -- but now it's absolutely nothing.
One of our funders said "no" in a most unpleasant way on Friday. She yelled at me for 15-20 minutes because I need a vacation. Does she not get that this body that is failing me travels with me wherever I go?
I am really done. I can't handle one more thing. I don't know how I'm supposed to work. I don't know how I'm supposed to do anything other than lie in bed and wait to die.
And yet here I am, writing this, sitting at my computer. The phone will ring and it will be someone in need and I will suck it up and do what I always do -- be the strong one, the tough one, the one with answers.
It's hard, though. Twice recently, a patient asked me how I was doing with my Crohn's. They figured, based on the sound of my voice and the fact that I work such long hours, that I was going to say things are good. Instead, I just don't answer -- I tell them they don't want to know, which is probably the truth. They want to believe that someone has made it, and so when I can tell them I'm doing well, it gives them hope. Do I lie? Never. I tell them that each patient's illness is different, that they can't gauge themselves by using me as a standard. I believe that's true.
I'm just so tired. It's Monday and all I want to do is sleep. I swam a bit longer than usual today in the hope that it would pick me up; it didn't. I'm nursing a chai soy latte but not doing well at getting it down. Part of me says never eat again, but I've promised not to deliberately cause myself harm, so I won't. Starvation's supposed to be a horrible way to go, anyway.
I told my shrink once that I'm terrified of trying to commit suicide because, if I failed, they'd lock me up in a psych ward -- and psych wards are not places where you get to feel better. So there's no chance I'm going to try to commit suicide. I'm a wimp.
But if today were the day I was to die, I wouldn't be the slightest bit upset. After all, there is nothing to hope for other than that my work will matter to someone. Everything else is a done deal. And unless I raise an extra $100,000, we will not move into offices so I can hire and train a new lawyer -- that's $100,000 in addition to the roughly $165,000 I need to raise every year to support myself, my admin assistant, health insurance, electronic legal research, office supplies, and postage. Advocacy for Patients will die with me. I have worked so hard, done something I believe is important, and it will die on the vine when I do. Yet another thing that sucks.
So I will focus on work. Just got an email from a woman who lost an EEO claim. Time for me to give my first pep talk of the day. And so it shall go today . . . tomorrow . . . and as long as I last. Jennifer
It's Too Hard To Be Sick
Posted on 11:01AM (EDT) on 2008-09-11
Warning: This is sort of a rambling rant. As a blogger, I get to get this out of my system in public and take some satisfaction in that! But it all comes down to how the heck I'm supposed to manage all that's on my plate. Since I know lots of patients feel this way, I thought I'd share.
I had a colonoscopy and upper endoscopy on Monday. Beforehand, I got estimates from my insurance company, Anthem Blue Cross and Blue Shield of CT, of what they would allow as the "maximum allowable amount" -- today's version of reasonable and customary. They said they would allow $2638 for the upper endoscopy, but actually it would only be half because I was having two procedures on one day, so that was to be $1319. They said they would allow $1792 for the colonoscopy.
Today I got the explanation of benefits. They actually allowed $700 for the upper endoscopy and $1500 for the colonoscopy. Oh -- and the colonoscopy ended up being more complicated because, upon finding two strictures in my small intestine, my doctor dilated those areas using a balloon, so they should actually have allowed MORE than what they estimated, but instead, they allowed less.
Two years ago, the same insurance company allowed $1400 for the upper endoscopy (which, again, was half of the maximum allowable amount because of the two-procedures-on-one-day rule) and $1450 for a colonoscopy without balloon dilation.
That leaves $2000 for me out of pocket. When I saw it, I burst into tears. I'm just so frigging tired of fighting for every little thing.
When I called the insurance company today, they told me that estimates are just estimates. The fact that they allowed less than 1/4 of what they estimated for the upper endoscopy was of no consequence. The fact that they paid twice this amount two years ago was of no consequence.
Fine. I'll file a formal appeal. This is what I do, right?
So I call the hospital and get a copy of the bill, and I call my doctor's office to get a copy of her dictation. The only problem is that the dictation is wrong about so many things that I might as well use it for toilet paper. She has the wrong medications, the wrong doctors I'm supposed to follow up with, the wrong history. Makes me wonder if maybe she was thinking about someone else. So I made the corrections and faxed it back for her to (hopefully in this lifetime) correct, both because I need it for my insurance appeal and because I'm seeing the motility expert next week, and he needs to have her notes so he doesn't decide he has to do his own set of scopes (which I clearly cannot afford!). Fine.
The following may sound totally irrelevant, but my thoughts are scattered today, so please bear with me.
We have been trying to get a patient's medical records for an insurance appeal. We sent the doctor's office a HIPAA release and asked for her chart. They faxed about 20 pages, although the patient's mom says the file is 3 inches thick. So we call and leave a message. We call and leave another message. I write a letter to the doctor, Sandy Gulati in Knoxville, TN, saying our calls aren't being returned and we need the records. And then we get a call from the office manager Debbie, who proceeds to tell me that it's the law that they can't give out another doctor's records, or results of tests ordered by another doctor. I recite federal HIPAA law chapter and verse and she says -- get this -- "do I need to send you a copy of the Tennessee statute on medical records?" I admit I took some pleasure in my reply: "I don't think you want to go toe-to-toe with me on the law," I said. She later emailed me and told me that I was right on the law, but as a matter of policy, which she was implementing effective immediately, they would not produce a copy of any other doctor's records. Ugh. Some people have too much power.
Then there were a series of emails about a patient with gastroparesis who needs a gastric pacemaker who's on Florida Medicaid. The doctor's office was telling the patient's sister that they didn't have hospital approval for the procedure (you need approval from the hospital for certain kinds of things), but we were being told that the hospital approved the procedure and the paperwork was being started. The patient's sister kept calling the doctor's office and getting the wrong information -- unless we were getting the wrong information!!!
I have a patient who wasn't allowed to use a restroom in a store and had an accident because of that. Not that I don't get how horrible this is -- it's happened to me enough times so I totally get it -- but is this really the case of the century, warranting at least one phone call per day?
Then there's the daughter of an elderly patient who couldn't sort out his hospital billing. I got him to fax it to me -- it was pretty simple, actually. She just couldn't be bothered asking her father for copies of the bills and his proof of payment. This is what I need to spend time on instead of sleep?
I don't really know what I'm trying to say except that I'm completely and utterly overwhelmed. Being a patient is too hard. I push and push -- I won an insurance appeal 2 weeks ago and they still haven't reprocessed the claim, so I keep calling -- so I shouldn't wonder why other patients push me, but it's killing me. I have't had a day off in a couple of weeks, and I did a bowel prep and had scopes Sunday/Monday -- haven't slept through the night since before that because I'm constantly going to the bathroom. I'm living on liquids. I'm working 15 hours a day. I don't see a way out.
My board wants me to investigate malpractice insurance. Fine. But we're not a law firm. We don't charge patients. We don't have a client's funds account or docket management or conflict of interest procedures -- why would we need conflict of interest checks when we only represent patients and never insurers, employers, schools, creditors, etc.? I've filled out 3 applications, but they're a mess because the questions just don't apply.
It just goes on and on. The phone rings or an email comes in and I want to hide. But this is my house; I have nowhere to go to hide. I'm a professional patient but I can't manage my own insurance claims -- somehow it's easier to manage other people's. But right now, I'm just stretched to the limit -- being this sick and this exhausted while trying to manage not only my life but about 100 others on any given day is just impossible. But if I take a day off, I'm afraid I'll get behind and never catch up. I'm a hamster on a wheel; I'm the circus guy with plates spinning on sticks; I'm the juggler with balls in the air. I'm gonna drop one.
Some days, it's just too hard. I'm sure I'll feel better after the week-end, which I will spend in bed when I'm not in the bathroom. But that still leaves today and tomorrow. And instead of working, here I am complaining because I just can't face one more thing.
And when there's nobody else on the planet who does what I do for patients, how do I ignore a single one?
Working from home is a great idea until it deprives you of your sanctuary, your escape. Then again, as Ed Vedder says, "escape is never the safest bet." I'm just not sure what is.
Today, it is just all too much. Jennifer
Can-Do Chronically Ill
Posted on 05:02PM (EDT) on 2008-09-09
Two things are happening this week that I think show us all what the chronically ill can do even when they are too sick to leave their houses.
conference comprised of twenty speakers is being broadcast on the internet. Most of the speakers (including me) are chronically ill. The talks are being attended by roughly 100 people each. And nobody has to leave their home -- neither speakers nor listeners. I think this is an incredibly great thing.
First, this is National Invisible Chronic Illness Awareness Week. This week, a
One Hour Challenge to benefit Advocacy for Patients with Chronic Illness. Every fall, Barbara asks patients to pledge to do something -- anything from walking to knitting to writing -- for an hour, and to collect pledges. Last year, she raised over $5200 for us, which would be huge even if Barbara weren't so sick. But as it is, it's truly outstanding.
Second, my dear friend Barbara Lynn, who has at least three chronic illnesses that we know of (although not entirely clearly diagnosed), has started her annual
Too many of us sink into depression when we are too sick to leave our houses. For me, when I can't get away from my bathroom for more than 20 minutes at a time, that can feel a little limiting -- understatement of the year! But the Invisible Chronic Illness conference and Barbara's One Hour Challenge are two great examples of what we can do even when we can't leave our homes.
chronicbabe, speaks right after me about combating self-defeating behaviors. Scott Davis, lawyer extraordinaire, talks about Social Security disability. Michelle Williams talks about Illness and Faith. The subjects are varied, the speakers are bright and well-informed, you can listen for free, the talks are all archived in case you don't get there in time -- everything needed for a chronically ill patient.
I'm giving my Invisible Chronic Illness speech tomorrow at noon EST, 9 am Pacific time. It's a good thing that I don't have to go anywhere, get dressed up, or face 100 live people looking as I do, after having had a colonoscopy and upper endoscopy yesterday. I'm not sure I could do it, although I seem to have a capacity for self-punishment that goes beyond the norm. But because Lisa Copen, who organizes this event annually, knew that many of us could only participate if we didn't have to leave our houses, she came up with this brilliant idea that allows patients to hear some of the leading chronic illness thinkers around.
Jenni Prokopy, otherwise known as
Lisa Copen, Barbara Lynn, Jenni Prokopy -- these are my heroes, along with everyone stuck at home who reaches out and listens and maybe asks a question or two.
All of us can do something to make the world a better place, no matter how sick we are. Tune in to Invisible Chronic Illness Week; take part in Barbara's One Hour Challenge; or make up your own dance of life from wherever you are. If everyone did all they could, the world would be a far better place for the chronically ill -- indeed, for us all. Jennifer
Things Every Chronically Ill Person Needs
Posted on 03:10PM (EDT) on 2008-09-02
A computer, a cat, and a book (or blog) to write.
The computer is our link to the rest of the world. It allows me to feel like I'm not alone even when I am, and I can turn it off and feel alone even when I'm not. Perfect.
A cat -- what can I say about my pal Emily? If I could post photos, I would, but let me try describing her. She's black and white cow-print and wears a colorful collar with a bell on it so I hear her coming. She has an ID tag, too, although I count on her not getting outside. You see, she's five pounds full grown. She looks like a kitten and even plays like a kitten sometimes. On Friday mornings, when we take the laundry downstairs, that's our ball-playing time.
Emily was sort of beaten up when I first got her. She has a sliver of an ear missng and she had a broken tooth that ended up having to be pulled. Her teeth are her biggest health issue, but we have that better under control with our relatively new vet.
I first got Emily a few days after I put my first furry friend King to sleep. She crawled into my arms without prompting and I took her home that day. Emily was just the right name for her.
For the first few days, Emily wouldn't come out from under my couch. I moved the couch and she moved to stay under it. I tried coaxing with food, but that wasn't doing it. I think her eventual need for the litterbox is probably what ultimately started her forays into the environs, but now, try to tell her every inch of this place doesn't belong with her! It means so much to me to know that I have given such peace of mind to another living being. Of course, she gives me that 10000 times over and then some.
And here she is, as if she knew I was typing about her, perched on my knee and left forearm for the time being, puuuuuuuuuuuurcolating loudly.
She is by far my best friend.
Friday Tired. It's sort of weird writing a book that nobody much reads, but there is no question that I wrote it more for myself than for anybody else. I rejected agent after agent who said that, if I would change it to a real memoir or a book on health care policy, but not both, they might find me a home. But I meant what I said at the opening: I can no more separate what it's like to be a patient from being a patient advocate than Emily can separate what it's like being a cat from being a companion. My book is all of me, and I refused to write it any other way.
I used to have a book to write, my
Now, I have a computer, a cat, and a blog instead of a book. It's true -- this blog has become the same sort of outlet for me as writing the book was. But then again, nobody got to read the book until I decided it was ready. It's weird hearing from someone who knows things about me that I don't remember telling them, until I realize it's the blog and they're actually reading it.
Contrary to what you may think, I have no idea who reads this, how many people read it, and least of all, what they think of it.
Those of you reading this would not be doing so without a computer, so I'm going to guess that you have one of my three suggestions all sewn up. Let's talk pets for a minute. If you are disabled and live alone, dogs can be hard (and I'm totally allergic) They need to be walked, after all, whereas Emily takes care of business in the litter box (most of the time). Emily eats two cans of food a day, but she can get by on dry food for a few days if I need to leave her alone overnight. I guess much the same could be said of gerbils or hamsters in terms of being left alone, but do they come when you call them, their bell telling you the are approaching? Do they sit on your arm when you are trying to type? Not every cat is Emily -- granted -- but all of you should have an Emily. You would be happier people as a result, I promise.
I don't know how a blog compares with writing a book in terms of emotional satisfaction. It's much easier; you aren't looking for perfection, and your readers aren't critiquing your word choice or your grammar. It's sort of more like a public journal than a book would be. It costs nothing to publish and nothing to read. Again, although I have no idea how many people read it, but I'm guessing that, at least certain parts of it are read by more people than those who would read the same content in a book. Maybe that's a good thing -- I'm not sure.
I pretend that I blog here because Revolution Health has asked me to do so. But the truth is that, like my book, I truly hope that something I say touches something in you. I definitely have an audience in my mind (and, of course, you all think I'm brilliant, signified by loud applause). As always, patients are my audience; that is very clear. My goal in writing -- book or blog -- is to strike a chord with someone, touch someone in a special way that makes them know they are not alone. What greater gift can we give each other?
Time to run. Bells are ringing, signifying tasks that need to be done. I know you have a computer if you're reading this, but think really hard about the cat and the book/blog to write. It will cheer you up -- you'll see. Jennifer
When Not to Fight
Posted on 09:45AM (EDT) on 2008-08-27
I got a formal diagnosis of gastroparesis this week. It's actually very bad. There is NO gastric emptying after 90 minutes. My stomach muscles are dead. Stomach muscles don't come back. This is permanent. This is why I am nauseated and have no appetite and all that. For two years, I've been telling my doctors I have mild gastroparesis. I was wrong. I have severe gastroparesis.
There are 3 meds for gastroparesis and I've tried them all and I'm on one of them. I have soy milk and a protein shake and soup or something like that for dinner every day. All liquids for the rest of my life, but that's okay.
But eventually, I will not sustain my nutrition living on liquids. Eventually, I will lose enough weight that the doctors will get nervous. They will want to put in a feeding tube.
Therein lies the question: When can/do I stop fighting?
For me, the answer is clear: When I need a feeding tube, I'm done. I'm not having one.
My internist is nearly hysterical. He's insisting I see my shrink because I won't have a feeding tube. Because I love him and he wants to help, I'm going to see my shrink, who I really like anyway.
But I'm not crazy. I've worked with too many gastroparetics and others with digestive diseases, and I know what it's like to live with a feeding tube. Maybe I'm being a wimp, but I've had many accidents in my sleep due to lack of control of my bowels. A feeding tube would be more of the same, but more often. And they fall out. And they get infected and you have to have it moved. I'm not saying I'm against feeding tubes for everybody -- if that quality of life is enough for you, or if you have hope that it's temporary, and you feel that you have hope for the future, then by all means, have all the treatment medicine has to offer. I just choose not to put myself through all of that when I know that I would have to live with it for the rest of my life.
I've talked here before about why life is worth living. Today's question is what to do when life no longer is worth living -- in my opinion.
First, I thoroughly believe that it is up to me to decide the answer to this question. It is my life, and I get to decide what is worthwhile and what isn't. Choosing not to fight doesn't make a person nuts, even if other people think they would choose differently. We are working with a patient right now who has stage IV cervical cancer and has been told she has a year to live. We are researching clinical trials for her to see if there are any options for prolonging her life. That is her choice. I always take my lead from the patient -- if they want to fight, I'm with them all the way. But my choice in that situation would be to decline treatment much earlier in the process. I've spent too much of my life in the grip of the medical establishment. It's painful and cold and demeaning. If I only have a finite amount of time left, I want it to be spent as well as possible.
People's reactions to this are interesting. Most say absolutely nothing. I told my closest friends yesterday that this would be my choice, and the only responses I got were from other patients who get that this is a reasonable choice under the circumstances. Nobody else responded. I guess they don't know what to say?
I sent an email to a lawyer friend asking if he would redo my will for me, and he said that if he has to shove the tube in himself, he will. I guess I need to go to a stranger for this!
It's strange to me that this is harder for others to accept than it is for me. So before you start writing me and telling me that I'm wrong and I shouldn't give up, think about a couple of things.
I have been a patient for the last 32 years and I will be until the day I die. I have been through countless indignities, especially since I have a "bathroom disease." I have weathered all kinds of pain and suffering. I have done everything anybody has told me to do. It's not like I didn't fight like crazy when I almost died in 2002, when my kidneys were shutting down. I had the PICC line that fell out and there was blood everywhere. I've had more fecal incontinence than I care to remember. I have taken all kinds of medicine -- everything anybody has wanted me to try and then some. I have fought the good fight. Nobody can say I didn't.
I'm not at all saying I'm going to do anything to speed this up -- just the opposite. I will continue to fight by eating as well as possible in liquid form. As long as I can get stuff down, I will do it. I will drink the protein shakes. I will do everything I can. I will add more nutrients to the protein shakes as I find the need through periodic blood testing. I am not killing myself.
But I'm tired and I've fought long and hard. Thirty-two years. And Advocacy for Patients with Chronic Illness -- it's strong and healthy, but I'm exhausted from begging for money. I'm just tired.
So I'll go see my shrink so everyone will know I'm not crazy. I will take as good care of myself as possible under the circumstances. I will continue to help everybody who comes my way. And when the time comes, I will let go. It may well be years -- I have a lot of weight to lose before I am in danger, and as long as what I drink is nutritious, I'll be fine. So this isn't imminent. I still have to raise $170,000 a year to keep Advocacy for Patients running. I figure I will be a here a good long time.
But is it ever rational to just let go? I think so. Jennifer
P.S.- I saw my shrink today. She doesn't think I'm crazy. She doesn't even think I'm depressed. There's a medication that we know is slowing down my motility that I have to stop taking, but it's what helps me sleep, and she's concerned that, if I try to wean myself off without help, I will stop sleeping, which wouldn't be good on top of everything else. So I'm working on getting with a prescribing psychiatrist (my therapist isn't a medical doctor) who will/may give me something to help me sleep while I wean off of this bad drug. But she didn't try to talk me out of anything; indeed, she was understanding and supportive. I will see her whenever the need arises as I pass through all that is to come.
Invisible Chronic Illness Week
Posted on 06:43AM (EDT) on 2008-08-21
here. Advocacy for Patients with Chronic Illness is one of the event's sponsors. I hope you will visit our page, as well.
Invisible Chronic Illness Week is September 8 through 14. You can learn more
This is a wonderful way for those of us with invisible chronic illnesses to be heard. Jennifer
Doctors, Patients, and More Bad News
Posted on 04:21PM (EDT) on 2008-08-20
If you've been following this blog, you know that I was in Dallas this past week-end speaking to a group of doctors. I was very excited to have a chance to speak to providers. I decided to try to talk to them about patient-centered chronic disease management on the theory that maybe I could convince them that empowered patients are a good thing if it means less work for them. So I tried to explain that, the more their patients learn to do on their own, the less the doctors will have to do. I thought that would be a persuasive hook. I was aware, from discussions with other physicians, that there is the fear that educated patients take too much time, ask too many questions. But I thought I could sell them on this being a worthwhile investment if, in the end, it meant less administrative work for doctors.
I posted below about the first leg of my trip to Dallas, when I found out that I'd won that huge insurance appeal. I immediately worked that into my speech, thinking getting an insurance company overturned when asking for four times the FDA recommended dosage would be impressive. Because of this huge win, I was walking on air when I got to Dallas. I gave the cab driver a ridiculous tip. I said hello to strangers in cowboy hats and everything. It was all good.
Then I ate a hamburger. It was the plainest thing on the room service menu. I was sick within an hour, but that alone isn't so strange for me.
What was strange was that I woke at 3:30 am and started going to the bathroom every 20 minutes until about 8:30 am, when it slowed to about once an hour. I had no idea how I was going to get through my speech, so I bought 3 boxes of Imodium at the hotel gift shop and ate a whole box full immediately.
The event was running late and the organizers kept saying that they were determined to get everyone out by 5 pm. I was the last speaker, so I knew I might have to cut a little. Little did I know there would be a sabateur on the agenda.
The doctor who spoke before me -- coincidentally, the first doctor who ever scoped me 33 years ago, Dr. Seymour Katz of North Shore/Long Island Jewish Hospital -- finished his scheduled topic close to on time, and then, much to my shock, said that he was going to talk about another topic that he recognized was not on the original agenda, but he thought it was important. More important, apparently, than anything I had to say. By the time he was finished, he was close to 1/2 hour into my time.
So there I was, sick as a dog, cramming a 1 1/4 hour speech into 45 minutes, thinking on my feet about what to cut because I had no time to do a thoughtful edit. An excerpt:
First, if we in the United States are going to get a hold on the cost and burden of chronic illness, we are going to have to move to a system of patient-centered chronic disease management.Patients who learn to navigate the system, practice shared decision-making with their doctors, and evaluate their care do obtain improved health outcomes.There are studies that have proven this.If patients are part of the team – a resource rather than the passive subject of your care – their health outcomes will improve.
We know this.There is a vast amount of research on chronic disease management and a large body of literature on patient-centered care.The model that comes closest to what I advocate is the “medical home” model.However, that model most often is centered around the primary care physician.What I propose is a patient-centered model instead.
Patients are the reason the healthcare system exists, and yet discussions of health care reform focus on infrastructure, data, medical professional workforce issues, and so on, but not on the critical role patients must play in order to maximize the success of any plan for reform.There are roles in all healthcare reform designs for healthcare providers, payers, government, and other stakeholders, but not for patients.Rather than being considered participants in the system, patients are viewed as mere subjects.This is a waste of a critical resource; a participating and engaged patient means a more compliant patient, which means better health outcomes.Indeed, the converse also is true: failing to engage patients to maximize their participation and compliance undermines the ultimate goal of improving health outcomes.
There ought to be no doubt about the value of actively involving a patient in his or her own care.“Knowledge and experience held by the patient has for too long been an untapped resource.It is something that could greatly benefit the quality of patients’ care and ultimately their quality of life, but which has been largely ignored in the past. . . .”“Collaborative [c]are acknowledges the centrality of patients as primary caregivers by integrating them as key actors in the care process.”
Patients who learn to navigate the system, practice shared decision-making with their doctors, and evaluate their care do obtain improved outcomes.“[P]atients with an array of chronic conditions who were enrolled in a comprehensive self-care management program experienced significant improvements in adherence to medical regimens . . . , health behavior change recommendations . . ., psychosocial and emotional distress caused by illness, self-reported health status, reduced occurrence of hospitalizations, and reduced costs of care.”Indeed, one study found that patient-centered practice improved health status and increased the efficiency of care by reducing diagnostic tests and referrals.
Around 90 percent of the care a person needs to manage a chronic disease must come directly from the patient.Evidence is growing that self-management interventions, such as self-monitoring and decision making, lead not only to improvements in health outcomes and health status, but also to increased patient satisfaction and reductions in hospital and emergency room costs. 
Still, mention patient empowerment and other stakeholders react with anxiety; complex, chronically ill patients already take too much time, ask too many questions, make too many demands.Educating them and building a system around the premise that patients are equal partners in managing their own health care will only increase the burden providers face in treating these complex patients, who often need support in filing health insurance appeals, claims for disability, letters for work and school.Providers already are saddled with the burden of trying to treat patients whose demands already are extraordinary.
This is a reaction to a set of myths about patients.
Myth number 1:Patients want more interaction with the healthcare system than they need.This is untrue.Most chronically ill patients yearn for a week that involves no contact with a doctor or payer at all.Patients want to take less medication, undergo fewer tests, and operate as autonomously as possible.Contrary to the views of most payers, patients want as little interaction with the healthcare system as possible.Their goal is the same as that of most payers, i.e., reducing interaction with the healthcare system, thereby reducing cost.There is no need, for example, for a value-based approach that punishes a patient for obtaining so-called “discretionary” care.Interacting with the healthcare system is stressful and often painful, demeaning, and unsatisfying.What is needed is a patient population that has the capacity and tools to develop judgment over time so they can make better decisions about when they need medical intervention and when they can manage on their own.Although patients want enough care to allow them some quality of life, they do not want more than they need.
Myth number 2:Patients are unwilling and unable to be full participants in their own healthcare.This is untrue.Most chronically ill patients want to manage their own care rather than relying a doctor for everything from prescription refills to notes to employers and schools justifying absences.Most patients want to understand, and are capable of understanding, the system.A healthcare system in which patients are subjects rather than participants is disempowering and condescending – and it is wasteful of the precious resources that patients bring to bear.With a modest investment in patient education and training, patients will be in a position to become more autonomous, thereby reducing the number of interventions by healthcare personnel.Teach patients to participate in the system and this myth will be dispelled.
This is particularly true of patients who are culturally and linguistically diverse from their healthcare providers.Too often, Spanish-speaking patients are ignored because they cannot express their preferences, knowledge, and needs in a way their doctor understands.It is not unusual to find doctors simply yelling at patients who don’t speak English, as if increasing the volume is going to make up for the need for a translator.Similarly, insensitivity to cultural norms and preferences is an obstacle to patient participation, which adversely affects patient compliance, and, thus, results in worse health outcomes.This does not happen because patients do not want to participate in their own care; it happens because the system does not facilitate such participation.
Myth number 3:The cost, both in time and money, of training patients is prohibitive.This is untrue.First, all or even most of the training need not be performed by doctors.There is a critical role in the system for patient navigators.Whether they are social workers or lawyers or just trained advocates, the cost of patient navigation is extremely low.We work with over 1,000 patients per year on a budget of about $170,000.Thus, for an average cost of about $170 per patient or less, patients can be trained and assisted to navigate the system on their own, seeking support from providers only when necessary.The use of cost-efficient patient navigators to train and assist patients will reduce the burden on doctors and the cost to the entire system.
Here, then, are some truths:
Truth number 1: The system cannot meet the goal of maximizing health outcomes without including patients as full participants in the healthcare system.We cannot improve health outcomes without patient compliance with doctor’s orders, and patients will be more compliant if they understand what is happening to them and why their compliance is necessary.Without patient education, we will not have patient participation, and without patient participation, we will not maximize compliance and, thus, we will not maximize health outcomes.Thus, any attempt at reducing the demands of the chronically ill on the healthcare system will fail to reach its potential if patients are not full participants in the system.
Truth number 2:Once patients become full participants in their own care, the system will become more cost effective and efficient.For example, recently, I had a staph infection in a surgical incision.So as to manage my wound care without lengthy, time consuming, and costly doctor visits, I took a photograph of the wound every morning and emailed it to my surgeon so they he could monitor my progress.This allowed my surgeon to monitor my progress on a daily basis in about 2 minutes per day at nearly no cost at all.
Truth number 3:For patients with complex chronic illnesses, health care doesn’t just mean what happens in medical offices and hospitals, and here is where I hope to offer you practical solutions that will assist you in reducing your burden while empowering your patients and improving health outcomes.As you know, your patients will battle issues in many areas, including:
·Employment- accommodations, FMLA
·Disability insurance/Social Security
Your patients and their parents are going to live with their disease forever.Chronic illnesses affect so many aspects of our lives.When we talk about chronic disease management, we have to include all of these.
They walked out. In droves. Dr. Seymour Katz, who used up much of my time, walked out in the middle of my talk. The second half of my talk, which I won't reproduce here, contained specific actions they could take to help arm their patients with the tools they need to be their own advocates. They still walked out. Every speaker except one left, and the one who stayed was conspicuously typing on her laptop while I was talking. Here I am, dehydrated, depleted, malnourished, exhausted -- and they just left. Or about half of them, anyway. It was embarrassing and I am mad as can be. Think about it -- most of them left before I had opened my mouth, so it's just the arrogance of some doctors -- not all, but some -- that says hey -- if you're not a doctor, you have nothing relevant to say to me. Since they didn't even wait to see what I was talking about, it's fair of me to infer that it wasn't me personally they walked out on -- it was the entire notion of listening to a lawyer/patient/patient advocate. Disgusting. They should be ashamed of themselves.
The only good sort of side-story is that, when Dr. Katz scoped me 33 years ago, it was before they used a plastic mouth guard to keep patients from biting down on the scope. He put his finger in my mouth and I reflexively bit down -- hard. He kept telling me to open my mouth but I couldn't. I've always felt sort of bad about that, but no more. Indeed, it couldn't have happened to a nicer guy!
I honestly don't know where I found the energy to get home, but I did. I burst into tears when I saw my Dad, who had come to pick me up at the airport. I came home, got myself organized, and went to bed. I stayed in bed much of Monday, but I worked yesterday, and again today. Except first thing this morning.
First thing this morning, I had a gastric emptying study. You eat some eggs that have been mixed with radiographic isotopes so they glow on x-ray. Then you lie under an x-ray machine for 90 minutes. The eggs are supposed to move out of your stomach and into the rest of your digestive track. My eggs didn't move. Not an inch. The tech came in at the end and said "wow, those haven't moved at all." DUH. Now I wait two days for the written report that will confirm that I have gastroparesis. Just what I wanted -- another diagnosis.
So how, pray tell, do you make upper GI motility faster while making lower GI motility slower? I already know there's no answer. So I'll go like a good girl and have scopes on September 8 so my doctor can pretend that taking 15 prescription medications a day passes for remission. She will wring her hands and shrug her shoulders and, honestly, say she doesn't know what to do. Because there's nothing to be done. Having Crohn's disease AND gastroparesis is an impossible combination.
I asked my friend Susan if she knew of a tall building I could jump off of. She said she knows of three or four, although one had been tried and the guy didn't die, so that probably wasn't a good choice. I'm trying to laugh. I'm trying so hard. Part of my job is to be "up" so I can encourage other patients to hang in. It sure is hard on days like today.
I'm not sure how to sum all of this up neatly. Since life can be messy, it sort of makes sense that blog posts may be messy sometimes, too. If nothing else, this blog post is real.
 R. Tattersall, “The expert patient: a new approach to chronic disease management for the twenty-first century,” Clinical Medicine Vol. 2 No. 3, 227-229 (May/June 2002) (citation omitted).
 J.H. Hibbard, “Engaging Health Care Consumers to Improve the Quality of Care,” Medical Care, 41 (1), I-61-70, at I-64 (citation omitted).
 Ibid. at I-63.
 Ibid. at I-65 (citations omitted).
 Stewart, Moira PhD; Judith Belle Brown, PhD; Allan Donner, PhD; Ian R. McWhinney, OC, MD; Julian Oates, MD; W. Wayne Weston, MD; John Jordan, MD.The Impact of Patient-Centered Care on Outcomes, The Journal of Family Practice(J Fam Pract) 2000; 49: 796-804
 California HealthCare Foundation.
I Love to Win!!!!!
Posted on 05:04PM (EDT) on 2008-08-19
On Friday August 8, I got a frantic phone call from a good friend with Crohn's disease. He'd been in a three year remission on a drug called Humira. His response was slipping, so his doctor wanted to double his dosage temporarily and see if he could recapture the remission.
Super-lawyer to the rescue!!!
I dropped everything and started working on an expedited appeal immediately. It was my summer intern's last day, and I pulled her off what she was doing to see if there was any new research (I'd already researched the issue once before) -- she found one good article -- and I started collecting my friend's medical records and writing. We filed an expedited appeal by the close of business (on the West Coast, which means it was late here).
The insurance company scheduled a hearing for Monday afternoon. I pretty much knew we were going to lose -- 4 times the FDA recommended dosage is a lot. But not only did we lose -- they threatened that, if he wasn't better by October, they weren't going to leave him on the dose he was on, which already was twice the FDA recommended dosage.
Advocacy for Patients and for me personally. I tried to explain to his wife that getting past the FDA recommendation is nearly impossible. But in my heart, I felt like they would feel it was somehow my fault if we lost.
When I got the phone call telling me it was denied, I was crushed and borderline panicked. I couldn't lose this case for this very special friend, who has done a lot for
So I sprang into action again. Our next step was an independent review by a company outside the insurance company. I asked my friend's doctor to write a letter explaining his strategy. He asked for only 6 months of the higher dose to see if we could get my friend back into remission. I wrote a letter discussing every single other drug used to treat Crohn's disease -- some that he'd tried and failed, and some that have really horrible side-effects -- and argued that staying on a medication that had been safe and effective for this patient was actually the most conservative approach, despite the FDA recommendation.
I was told to expect a decision by Monday, but I gave the woman at the insurance company my cell phone number just in case. Sure enough, when I checked messages in the Charlotte, NC airport, I got the word: WE WON!!!!! Yup, at 4 times the recommended dosage, we won. Just to rub it in, I called the woman at the insurance company and demanded that she put the authorization through that day so he could get his meds immediately. I really enjoyed that!
It was huge. I was in an airport Starbucks pumping my fist in the air and, when I called my friend and got his wife on the phone, I just kept saying "we won!" She was so excited. She said "no." I said "yup, we won!" She said "you're kidding." I said "nope, we won." We went on like that for a few minutes. She said "we owe you," and I said "no, I finally had a chance to repay YOU for all you've done for me," and we left it at that.
I felt like I just won the biggest case of my entire life. The adrenaline burst was great. I couldn't have been more excited. Humira at the regular dosage costs about $1100 per month. So this was about $4500 per month that I got them for 6 months -- and this is his best chance of regaining his remission and going on with his life.
When I finally got to Dallas and checked email, there was an email from my friend that said "you are a rock star." He really meant it. I couldn't have been happier.
And the whole thing took exactly one week -- two appeals in one week -- starting Friday August 8 and ending Friday August 15. My friend didn't have to miss one dose of his medication.
1. Never take no from an insurance company. Always appeal.
2. Never just write a letter -- attach medical records and medical journal articles.
3. Independent reviews, otherwise known as external appeals, are the best things to happen to patients in a VERY long time. They are truly independent and the insurance company is required to do whatever they say. Don't give up if you lose with the insurance company -- always take the external appeal.
4. Winning is really great!!!
The Surgery Saga: Chapter Seventeen
Posted on 08:19PM (EDT) on 2008-08-08
Wow -- what a week. An emotional roller coaster if ever there was one. It started with the insane recommendation from my gastroenterologist that I drink "beef tea" to deal with my anemia, which was very depressing. Then the surgeon lifted my spirits by assuring me that we can do better than beef tea, and prescribing a form of iron supplement that is supposed to be easier on the gut. Great news! Then I took that iron -- two doses. There was jet black water pouring out of me. I honestly thought for sure I would end up in an emergency room due to dehydration. But I used an experienced patient's home remedy -- take anti-diarrheal and pain meds to stop the flow. I managed to get some water down, and then a protein shake, so I didn't have to go to the ER, but I sure was a wreck.
That brings me to today. My internist called, said he talked to the "beef tea lady," and they had decided I should have a gastric emptying study. A gastric emptying study. I haven't been scoped for 1.5 years despite a history of Crohn's disease and polyps, as well as upper GI Crohn's that could explain the nausea and vomiting, and she wants a gastric emptying study. Fine. Whatever.
I think, though, that it's time to take a rest from medicine for a little while. The surgery was a success as far as it went. I am not in excruciating pain all day every day of my life, as I was before the surgery. That's good. Unfortunately, the surgery didn't affect the nausea, lack of appetite, vomiting. Okay. I've been here before. I have choices and I can do some things to help myself, and then I can do what ultimately all of us with a chronic illness have to do -- accept my disease for what it is, and live my life to the fullest.
So I guess this is sort of the end of the Saga. Of course, I'll keep blogging, and I'll keep fighting to make every day of my life worth living. I'm committed to drinking a protein shake every day. I'm committed to going back to swimming every morning as soon as I get the written OK from the surgeon. I'm committed to spending my life trying to make life better for as many others as I can reach. I will take care of myself, take my meds, follow doctors' orders. But I will live in the space of my life that is not about being sick all day every day.
Because no matter how sick we are, there is space for something of a life. For me, there is my house, my wonderful cat Emily, a small group of mostly email friends, and this incredible work -- I get to save lives, for goodness sake. What more can a person want?
Health would be nice, but you know what? It's not essential. I'm going to live the life I have and be joyful for the life it is. After all, what else is there? Jennifer
The Surgery Saga: Chapter Sixteen
Posted on 09:18PM (EDT) on 2008-08-06
It's late and I'm tired, but today was so important that I couldn't go to bed without reporting in, especially after that awful day yesterday. I went to see my surgeon, Dr. Jeffrey Milsom, today. He looked at the wound and was pleased, so that's good. Then my dad and I told him how exhausted I am, how I'm nauseated and vomiting and anemic. And we told him about the beef tea suggestion my GI doc had made.
They don't make people like this man often enough. Without ever criticizing the doctor who suggested the beef tea, he said "we are going to find an answer and it won't be beef tea." He said doctors have bad days, too, so maybe the beef tea suggestion was attributable to that. But then he gave me a prescription for an iron treatment that's easy on the gut called Niferex. He said he was going to talk to the gastroenterologist and see about maybe a scope of the upper GI to see if there's any active Crohn's that would explain the nausea and all. He was so kind, and he made me feel like I'm not in this alone. We can do better than beef tea, he said.
But what I want to tell you is this. The minute he got it about the beef tea, I felt better. The beef tea suggestion was basically like saying to me "sorry, there's no hope for you." His reaction -- that there's an answer and it's not beef tea -- gave me my hope back. AND THAT IS WHAT IT'S ALL ABOUT -- HOLDING ON TO HOPE.
So with Dr. Milsom's inspiration, I am going to get my act in gear. I will take this new med and it will work. I am going to start forcing myself into the habit of drinking a protein shake every day (Gloria Steinem taught me how to make them -- soy protein powder, cocoa, collagen, vitamin C, and water in a blender -- if you like chocolate, it's not too bad). I am going to get back to swimming as soon as the last bit of the wound is closed.
I have had this disease for 32 years. I have been far sicker than I am now. I have always found a way to have a life and I am going to do so again now. Time for me to get back to doing my job of managing my care proactively. I WILL have a life, dammit. I will.
Dr. Jeffrey Milsom didn't just do surgery on me. He gave me back my hope. What greater gift can one human being give another? Maybe, by sharing this with you, I will give you a little hope of your own. If so, pay it forward. Everybody could use a little hope, you know? Jennifer
The Surgery Saga: Chapter Fifteen
Posted on 08:25AM (EDT) on 2008-08-05
Well, I suspect the surgery saga is almost over, but not the saga of my daily battle with my disease. My insurance company did great so far except for one doctor bill I'm going to fight with them over. The EXACT same procedure was paid at $125 in April and $80 in July. Uh-uh. That and the anesthiesiologist's bill, which hasn't been submitted for payment yet, and I'll be finished with the insurance end of all this. The work I did beforehand -- getting the estimate from both the surgeon and the insurance company -- really paid off. There's one lesson learned.
So why am I sitting here crying, tears coming faster than I can breathe? Because it didn't work. Yes, the major pain I was having is gone. But I still can't eat. Even soup is hard to get down. I'm back to living on liquids. I'm nauseated and have no appetite. As the doctors put it, there's occassional emesis, which means I'm puking. I'm so tired that all I want to do is lie down wherever I am -- on the floor in the grocery store even. I am anemic -- red blood cells, hematocrit, hemoglobin and iron are all low. And lots and lots of diarrhea.
Dammit. I went through all of this optimistically. I believed them. I did my part -- I got out of the hospital in 2 days. I treated my own wound rather than having a home health nurse come twice a day to change the dressing. I babied this infection until it was pretty much gone. I took a frigging photograph of the wound every single day and emailed it to the doctors in New York. I DID EVERYTHING I WAS SUPPOSED TO DO. And it didn't work.
I knew it. I told them there were 2 unrelated problems. WHY DON'T DOCTORS LISTEN TO THEIR PATIENTS?
Now what do I do? The surgeon sees me tomorrow and I'm guessing he's going to discharge me -- the surgery is pretty much over and the wound is almost healed. So that will be the end of the surgeon's involvement, and when the anesthesiologist submits his bill and that's paid, the Surgery Saga will be over: surgery done, wound healed, bills paid -- what more could I want?
I WANT A FRIGGING LIFE. IS THAT REALLY TOO MUCH TO ASK? I HOPE YOU CAN READ THE SOBS THAT COME WITH THIS. While I would NEVER NEVER hurt myself -- hear that loud and clear -- I am NOT suicidal -- I do sure as heck wish I would have a massive heart attack and die right now. I don't want to live this life. Again, I AM NOT SUICIDAL -- please don't read this wrong. I'm just miserable. I'm tired of being sick. I'm tired of not being able to spend time with friends. I'm tired of being tired. I'm tired of there being no answers, no end in sight. I DO NOT WANT THIS LIFE.
My gastroenterologist is not helpful. Get this -- she told me to eat red meat. I said I can't eat solids. So she told me to make beef tea. I swear. She told me to put beef in cheesecloth and steep it in hot water and drink it. This is how I should live the rest of my life. I wish she were kidding, but she's not. She has no answers. I can't take iron pills -- they will kill my gut. I suppose maybe it's not bad enough to do IV iron -- yet. I don't know. All I know is that I'm in this alone.
I love my gastroenterologist because she saved my life. But she sent me to the butcher dermatologist without calling ahead and asking him to just look at it and call her. Had she done so, I might have avoided this infection. She didn't listen to me before the surgery when I told her that I thought not being able to eat was separate from the pain. And now she's recommending beef tea. I'm loving her a little less these days. And she's the only doctor who costs me an arm and a leg to see -- my insurance has covered everybody else at what they charge, but not her. That doesn't make me want to run to New York to see her just for her to recommend beef tea. I can get that by email.
What am I going to do? I have to go to Dallas in two weeks. It's too late to cancel -- I'm giving a speech to 150 doctors and my surgeon told me not to cancel it, so now it's too late and I have to go. I'm gonna just collapse in some airport somewhere. When I went to the Capitol last Wednesday, I was okay until I spoke at the meeting I was at. When I finished talking for maybe 2 minutes, I was shaking and couldn't sit up -- I had to go put my head down. How the heck am I going to give a 45 minute speech?
I HATE that my doctors don't think this is their problem. I just hate that I have to do all this alone. My dad's been great, but all he can feel at this point is sad. Nobody can do anything. Nobody knows what to do.
I don't know the answer. Neither do my doctors. All I know is that I REFUSE to spend the rest of my life like this. There HAS to be an answer. There HAS to be a way to fix this. I HAVE to keep believing that because otherwise, I might as well just get in bed and stay there. But today, it feels pretty bleak.
If only I could click my heels and chant "there's no place like home" and come out of this frigging nightmare. Jennifer
The Surgery Saga: Chapter Fourteen Postscript Three
Posted on 04:49PM (EDT) on 2008-07-29
Now, here's where this infection gets really serious. Keep in mind that part of the problem is that, for some unknown reason, my skin is breaking down if a dressing is attached to it by any kind of tape, including paper tape. So the gauze dressing is being held in place by my usual at-home attire, leggings.
But tomorrow I have to go to a business meeting. What on earth am I going to wear? I think this is the biggest challenge I've faced throughout this entire journey through surgery.
I mean, get cut open? Sure -- no problem. Deal with major pain? I'm tough! No energy? Just push harder. Get a serious staph infection? I've dealt with worse things. But this? THIS is a true crisis!
I've been through my closet six times. All of my dress pants either have a zipper in front -- OUCH -- zipper over wound -- BAD -- or they aren't tight to my body and won't hold the dressing in place. What's a girl to do?
My friend Denise tried to take me shopping, but I really don't have the energy. I searched the internet, prepared to pay for overnight delivery, but couldn't find a solution. After all, a dress wouldn't hold the bandage in place, so that doesn't work unless I wear pantihose, and I just can't do that in July.
Okay, okay, I know this may not be a medical emergency, but it is a fashion emergency, and what really matters, after all? Jennifer
P.S. -- In case anybody had a question, I'm kidding.
P.P.S. -- My pregnant assistant Celeste just told me the answer, although a little too late. I need maternity pants!!!
The Surgery Saga: Chapter Fourteen Postscript 2
Posted on 07:56AM (EDT) on 2008-07-26
y. I've had chances, but have never done it, mostly because I know how lousy a system we have and what it takes out of the person suing to have to go through depositions and all that.
Yes, I'm a lawyer, but I've never sued anybod
On the other hand, I was sitting here yesterday getting madder and madder about the fact that I can't really work full-time and I'm in pain and this frigging infection is extending my recuperation time and I'm just plain pissed.
So I wrote a letter to the chair of the dermatology department, told him what happened, made it clear that I was really angry, and said that I will not sue them and I don't care if my insurance pays them, but if they try to bill me for one dime's worth of balance, they were going to find out what it's like to be sued by a really good lawyer. Do you believe the butcher who did this to me got his hands on my letter and tried to call me to talk about it? I told him I would not speak to him, he kept talking, and I hung up on him. The phone rang again, but this time, it was the chair of his department. He was appalled that the butcher tried to call me (or that he'd even gotten his hands on my letter). He promised that I would not be billed for anything. He asked my permission to investigate the butcher's conduct and possibly discipline him. I told him he can do whatever he likes as long as I don't have to ever see a bill with this man's name on it. He asured me there will be no bill. I also told him I've been taking a picture of the wound every morning for my gastroenterologist and surgeon, and that he can have the pictures if he wants them. He said this would all be looked into carefully, and this doctor might be disciplined, that I definitely will not get billed, and that he was very sorry any of this had happened. I ended by suggesting that he tell Dr. Gaan, the butcher, that he should not be responding to mail addressed to someone else. He strongly agreed -- I think he may have been most upset that the guy actually tried to call me.
I blew off some steam and felt a bit better. And at least I know I don't have to pay for the privilege of this infection. Ugh. Unfortunately, none of that made the infection go away. Jennifer
The Surgery Saga: Chapter Fourteen Postcript
Posted on 10:25AM (EDT) on 2008-07-25
Did I say the worst that could happen would be an infection? Well, and so it is. Staph infection, very yukky looking and green. Now I'm on antibiotics in addition to prescription antibiotic ointment for the wound. I'm very, very tired.
I was good yesterday, though. I spent much of the day in bed. I used my BlackBerry for email, so except for a few calls, I didn't do much work. Today's started out a little busier, and with my law student intern plus my assistant here today, it's hard to stay in bed with so much going on in the house. Still, I have to admit that resting really does help. DUH!
The Surgery Saga: Chapter Fourteen
Posted on 04:13PM (EDT) on 2008-07-22
For weeks, I've been trying to hang on until the moment I got to see the surgeon and maybe get some answers about the pain and fatigue. First, I had an appointment with my gastroenterologist, which is only one floor down from the surgeon. It turned out, the surgeon was there seeing someone else, so I saw the surgeon in the GI doc's office. He looked, told me to keep doing what I was doing, the wounds were healing, the pain was from the big hematoma (pocket of blood) at one of the incision sites, the fatigue was from some anemia and the pain -- everything moving in the right direction. He told me to come back in two weeks and off he went back upstairs. Then came my gastroenterologist, who decided that she didn't like the look of the wounds and wanted me to see a dermatologist. So she had her office call across the street to the determatologist and get me in to see someone. She didn't have a whole lot more to say.
I went to the determatologist's office and before I got two words out of my mouth, he was currring away scabs. Not a consult. No picking up the phone calling my GI doc. Actually, he had the nerve to complain that he was having to do the surgeon's job for him. He cut off everything that was healed, leaving it all wide open all over again. And more tape, despite the fact that even paper tape has been ripping off my skin. Two kinds of antibiotic ointment. A bunch of different kinds of gauze pads. AGONY.
I knew it was wrong.
I got home and wrote the surgeon and the gastroenterologist. The surgeon was calm -- he said although he wouldn't have done what the dermatologist (whose name is Dr. Gaan -- remember and avoid it) did -- but that I should still be okay. He reminded me to wash using the antibacterial soap he gave me.
But the Gastroenterologist -- she didn't say much in writing, but I heard from her by phone today and I sure am glad I'm not that dermatologist. She was LIVID. The guy was supposed to look at me and call her (did anybody tell him that?). He wasn't supposed to cut (again, how would he have known that?). And NOW I'm really scared. My gastroenterologist saved my life. She got me through my kidneys shutting down. She and my surgeon got me through a wound problem after surgery that was as bad as I can imagine -- staph and the whole deal. THIS has her freaked out. If she's scared, I'm scared.
The worst that will happen is infection, but that could drag out this recovery for a long time. I asked the surgeon if I should still be planning to go to Dallas on August 15 and he said yes, but I don't know if that was true or just to keep my spirits up.
Interesting regime now -- I am to take a photo of the wound every day and email it to the GI doc and the surgeon. I go see a local doc every other day over the next few days. We watch it like a hawk. I keep using the antibacterial soap. I use NO tape and as little ointment as possible so things stay dry. I feel sorry for anybody who has to look at those pictures. They're totally gross -- although my brother the doctor says not so bad. I guess it could be a lot worse.
I HATE THIS. I'm so tired. I went to lie down for a while this afternoon and the sh*t hit the fan -- I don't think I was in bed for 5 minutes. I'm tired and in pain and cranky and all I want is to be left alone.
Next time someone tells me they're going to operate on me with a laparoscope, I'm running in the other direction!!!! Jennifer
The Surgery Saga: Chapter Thirteen
Posted on 03:56PM (EDT) on 2008-07-22
Title: The Role of Miscommunication in Poor Medical Outcomes
Perhaps it is inevitable that patients and doctors will have communication issues, although I like to think not. My surgeon is an extraordindarily compassionate man who would never deliberately upset me. However, after he got the faxed written CT scan results yesterday, which said there is a pocket of blood/fluid in the lower left quadrant, he had one of his nurses call me. She said that he had reviewed the CT scan written result, that he would not drain this seroma, and that I should let him know if I have any other problems -- as if somehow the fact that he was not going to address the seroma should resolve the fact that I'm exhausted, shaky, in agony, and unable to work a full 8 hour day (when my normal days are 12-15 hours).
At first, I was livid. How dare he/she/they blow me off? Then, I was scared and really upset -- was my wonderful surgeon blowing me off, abandoning me, despite the fact that he knew I had all of these other symptoms because I have been emailing him almost daily? I picked up the phone as I started to cry. Ugh -- it was just after 5 pm and the office was closed. So I waited for the answering service and left a message for the Fellow on call.
He called me back very quickly. I told him what had happened. I was still crying, so I didn't have to explain how upset I was. He tried to reassure me. Dr. Milsom would never abandon me. I would see him on Monday and we would figure something out. He also promised that he would tell Dr. Milsom about my call.
Within minutes, Dr. Milsom emailed me saying he was absolutely with me and would help me resolve my symptoms, and that he would give me a call, as well. Although I emailed back that, with his reassurance, I didn't need him to call me, he called me anyway.
Do you know what a "mensch" is? It's a Yiddish word for really good guy, solid guy, someone you can count on. It is a word that describes Dr. Jeffrey Milsom. He called. He didn't rush me off the phone, although I felt that I was wasting his time because I would see him on Monday, and I was sure that he had patients with more urgent needs. I told him about my pain. I told him that I was shaky and weak and so tired that I'd had to lie down during the day to take a nap -- something Superwoman Jaff NEVER does!
So he asked "how much are you working?" And that's when lightning struck. I told him I was trying to work an 8 hour day, which is a lot less than my norm. He then said that just because my surgery was laparoscopic didn't mean that it wasn't major surgery. I shouldn't be pushing myself.
Honestly, I really thought that, since it was laparoscopic surgery, it was pretty minor. Before the surgery, when he met with me and Gloria, and he said I would be able to do some work within a week to 10 days after leaving the hospital, I took "some work" to mean less than my usual -- I didn't really consider that what he probably meant was less than what's usual for normal human beings, less than an 8 hour day.
So now I know that part of the reason I feel so lousy is that I've been pushing myself too hard. This is not surprising to anybody except me! I must admit that I know better -- I always push myself too hard. It shouldn't have taken the deterioration of my health after surgery, and then the obvious question from my doctor, for me to realize that if I'm not feeling well, I probably should be resting. I get it now, but now's about 3 weeks too late.
Dr. Milsom will see me on Monday. I'll show him the oozing wounds and all of that. But I also have to own my error in presuming that, when I was told I could do "some work" a week or so after my surgery, he didn't mean I could work an 8 hour day.
How much are poor medical outcomes the result of miscommunications between doctors and patients? Dr. Milsom couldn't have known what "some work" meant to me and I never asked what it meant to him. The nurse who called from his office who upset me so much surely didn't intend to do so; she didn't know I'd been having ongoing symptoms that Dr. Milsom knew about, or even that I was going in to see him on Monday.
I was right to push to a point at which I talked to Dr. Milsom. I should have pushed that hard 10 days ago; that may have saved me some of the last 10 days of pain and fatigue and fear and upset. Dr. Milsom also should have responded to my emails sounding the alarm. He's crazy busy, in the operating room 2 days a week and seeing patients 2 days a week, so it must be really hard for him to read and respond to all his emails. But then he should have had someone else call (not someone like the nurse who he eventually did have call, who had insufficient information about the situation to have an intelligent discussion). I didn't push because I didn't want to bother him. I tried to manage as best I could with my internist. And he probably knew that none of what's happening with me is critical -- it matters a lot to me, but I'm not going to die from any of it.
But how much better would I be feeling today if he or one of his Fellows and I had spoken 10 days ago, or if I'd gone into New York to see him 10 days ago? Both I and Dr. Milsom would have been better off had our communication been better.
Dr. Milsom is the greatest. He is not only incredibly skillful, but he is caring and compassionate, and I couldn't believe that he was going to abandon me. Part of what upset me so much was that I thought I knew that about him. It turns out I did and I do. But in the absence of good communication between us, alot got lost.
Communication is essential to good medical outcomes. That's today's lesson for me. Jennifer
The Surgery Saga: Chapter Twelve
Posted on 03:55PM (EDT) on 2008-07-22
I think it's fair for you to assume that the less you hear from me, the harder this road is to hoe. There's ridiculous pain that should have faded by now. There's no appetite, no energy, and just generally not feeling well. Today I had a blood draw to see if there's infection and a CT scan to see if the 2 lumps at two of the incision sites are things that have to be addressed (probably a hematoma that has to be drained?). It's just miserable. I still have lots of oozing from broken down skin -- I'm just about had it with the whole thing, but unfortunately, I don't get to say when it's over and done with.
Work has been sort of quiet, but all kinds of things have been hitting the fan today. Thankfully, my law student intern, Nicole Netkin-Collins, is such a godsend -- everything I give her, she does really well. She can write, she can research, she's really interested, and she has a large project that we're supposed to be working on together that she's been working on when I haven't had other assignments for her. I'd be in tears were it not for her.
The other person who's really been coming through for me is my Dad. We actually thought we were going to New York today until my amazing internist saved the day and got the tests done here. But Dad was ready to take me if that needed to be done. He stopped by this afternoon to see if I was okay after all the tests and when he realized I had nothing in the house for dinner, he went out and got me all kinds of Chinese soups and noodle dishes that I'm sure will hit the spot. He even took tomorrow's grocery list with him! It's really heartwarming to me to see him help me because he genuinely wants to, and to see him start to learn how much you get when you give. There is a real mutuality growing in our relationship -- frankly, writing this makes me tear up unexpectedly! I think my Dad and I may be figuring out what a HEALTHY loving father-daughter relationship really feels like.
The Surgery Saga: Chapter Eleven
A colleague sent me a press piece reporting on a survey that found that 52% of Americans would rather be dead than be disabled. How sad. I may not be having a good day or even a good week, and there are plenty of times I think to myself that this would all be so much easier if I were dead. But would I really rather be dead? No, I resoundingly would not.
There are people out there who read this blog -- I'm told by Revolution Health that they can count the people who are reading even if nobody's posting a comment, and people are reading. Some of those people are disabled and don't have a voice. Some of them aren't lucky enough to be able to create a career path that involves work that I can do from home regardless of how sick I am. Some of them are depressed and need a reason to keep going. To all of them -- and to the 52% of Americans who think it's better to be dead than disabled -- I say: I am disabled, hear me roar! We SHALL overcome! Jennifer
Posted on 05:16PM (EDT) on 2008-07-11
This is going to be a short one today, the main point of which is that it's often not the surgery itself that's the worst of what you have to deal with.
In my case, everything is working correctly and the 5 small incisions are healing just fine. But they told me to use a heating pad, so I did. Then there were little spots that were oozy a little so I covered them with gauze and paper tape. Well, the skin is totally breaking down from the gauze and paper tape, creating a real mess. It's not quite thoroughly infected yet, but the doctor gave me antibiotics in case it gets worse over the week-end, and now I have lots of oozing yuk and no way to affix gauze to it other than stick it inside my pants and hope it stays still.
Nothing is ever just easy.
I've been in bed most of the last two days. I'm very tired. Thankfully, we had two really slow days around here, so I didn't fall behind. However, I also never got any sleep -- I would just be nodding off and the phone would ring or my dad would stop by or something.
I'm hoping Emily (the cat) and I will have a quiet week-end when we can really get in some recovery time. I need it badly. Jennifer
The Surgery Saga: Chapter Ten
Posted on 12:27PM (EDT) on 2008-07-08
I'm not very good at recovery. I was fine over the long week-end -- since nobody was calling or emailing asking for help, I was able to rest. But I really over did it yesterday and I'm paying for it.
I have to respond to these questions from the NIH on this grant, so that was the first thing I did yesterday. There's only one item left, and I have to wait for my partners in Michigan to finish that up, so that's good. The rest was the usual stuff -- returning phone calls and taking new ones, responding to emails -- nothing huge. But I tried to extend my pain meds from 2 every 4 hours to 1 every 6 hours. By the afternoon, I was in agony. I had to go to the dentist to have my tooth fixed, and then my Dad insisted that I get something to bring home to eat, so I got some wonton soup and a noodle bowl that was very good. I got two very complex, lengthy emails late yesterday, and then I had to write a letter to my niece who's away at camp and I haven't written her yet. By the time I stopped working, it was 6:30 pm. I did eat and all that, but I was a mess.
So today I'm trying to take it easier. So far, the phones and email haven't been too out of control. And I bumped my pain meds back up to 2 every 4 hours, although I have to cut back or I am going to run out too soon. But the pain is a lot worse today because of yesterday, I think. Now, Celeste has promised my father that she'll see to it that I rest today (silly promise to make knowing me as well as she does!), but I thought I'd fill you in before I go lie down.
Basically, everything's okay. I should be eating more, but I have no appetite. I should be resting more, but I have trouble just sitting still. But the pain is manageable at this higher dosage and since I suspect I set myself back yesterday by doing too much, I am letting myself take the higher dose of meds today and then will go back to weaning.
All in all, pretty much normal recovery. Hopefully, I won't forget how bad the pain was last night and this morning -- that ought to keep me sitting still. We'll see. Jennifer
The Surgery Saga: Chapter 9 Postscript
Posted on 07:41AM (EDT) on 2008-07-06
Two surgeries ago, an anesthesiologist knocked off a piece of one of my front teeth. I've had a filling there all this time. I woke up this morning and the filling is gone, leaving a big, gaping hole in the front of my mouth.
It's a small price to pay. I'm not even aggravated. If this is the worst thing that's going to happen to me with this surgery, then I'm very, very lucky. Jennifer
The Surgery Saga: Chapter Nine
Posted on 10:48AM (EDT) on 2008-07-05
My Dad picked me up at 6 am on Tuesday. I was home by 9 pm on Thursday. The whole thing was a miracle.
First, we got to the hospital about ½ hour early, at about 8:30 am, and they were ready to do all my paperwork and pre-op vitals immediately – not even a 10 second wait. They tried several times to get an IV in me, but because I was so dehydrated, they couldn't get one that would last more than a few minutes. The surgeon was running way behind. I sort of lost track of the time frame. My Dad and I played with the NY Times crossword puzzle for awhile and got most of it. I think they took me in at about 2 pm and then, in the OR, they tried again to get a good IV in. I told the anesthesiologist to put in a central line, but why believe the patient? So my arms are pretty bruised from all the times they tried to get in the IV and, ultimately, they put me out with gas and then put in a central line.
The surgery took about 3 hours, as best I can tell – we're not sure how long it was before they finished putting in the central line, and they came out and talked to my Dad when they were closing me up – but somewhere around 2.5 to 3 hours is my best guesstimate for the actual surgery. The surgeon – Jeffrey Milsom, Chief of Colon and Rectal Surgery at NY Presbyterian Cornell-Weill Medical Center – talked to me in the recovery room and to my Dad, as well. He actually drew my Dad a picture (just what I needed -- a memento!), and showed him the process on the computer. What he found were two loops of bowel that were "cemented." That surely explains the pain I was in for the past year! Whereas most surgeons would have resected the intestine and removed the portions that were cemented, my miracle guy instead spent hours peeling scar tissue away from the intestines so things should actually move now. YAY!
Anyway, I woke up in the recovery room with good pain control. When they told me that it was done laparoscopically, I cried and cried. At first, they didn't understand why I was crying – they were worried that I was in pain or something. But then I explained that these were tears of joy. I was so afraid of what was going to happen to Advocacy for Patients with Chronic Illness if I'd had a full open procedure, but I also fully expected that to happen. I didn't dare dream that things could go this well. Dr. Milsom had tried laparoscopy on me before and couldn't do it. So this truly was a miracle – brought on, in large part, by what my Pearl Jam-related friends did for me – not just the fundraising, but making me feel like what I do really matters. I went into this surgery with the best possible state of mind, and I'm convinced it made all the difference.
Anyway, they kicked my Dad out of the recovery room at about 8 pm-ish on Tuesday night, before they had a bed for me on the floor, which was fine because I was plenty sleepy. I had a major Pearl Jam fan nurse in the recovery room, so she was quite impressed when I told her how I had spent the previous week-end! So I was well taken care of (although in a drug-induced stupor, I promised to get her something autographed, but I am not asking Mike for anything else after all of what they have done for me – I'll have to figure this one out).
I'm not sure what time I got taken to my room, but I pretty much slept through the night. I had a pain pump with dilaudid that I used as little as possible. My theory about surgery is that, once the surgeon does his job, then it's up to me to do mine. So the first thing I did on Wednesday morning is get up and walk. I had done 3 laps around the floor by the time my Dad got there when visiting hours started at 11 am. They had signs up around the floor letting you know how many feet you had walked, so we calculate that 11.1 laps would equal a mile. We walked that mile on Wednesday.
Because I know the drill, and my sights were set on getting out of there before the July 4th week-end, when the hospital would be under-staffed and my surgeon would be out of town, I gently but methodically took control of the situation on Wednesday. I was lucky that the resident who was sort of in charge of me respected the fact that I know my meds and my Crohn's disease and my needs. In turn, I respected him for not having too much ego to admit that I know more about meds for Crohn's disease than he does! So we had a good negotiation over what maintenance meds I needed to be taking no matter what. By the end of Wednesday, in addition to walking a mile, I got them to pull the Foley catheter (for urine), and I switched from dilauded through the pain pump to Percocet by mouth, too. I even ate gross Jello -- anything to get out of there!
Pulling the Foley gave rise to another set of issues, though. Once I didn't have a catheter, I had to walk to the bathroom. My IV pole had 2 pumps on it, and there was the phone cord, the intercom/remote control cord – it was impossible and everything was tangled. Even the bed had to be plugged in! Untangling that mess was the one really stressful event of the whole hospital admission (which tells you how well everything else went). I had to deal with it so I could get to the bathroom, but it was quite a job. And, of course, it all occurred at the end of visiting hours, so my Dad had to leave before it was all worked out. He told me to remember to include this in my blog!
I also had a sort of cranky night nurse on Wednesday night, and since I had just done battle with all the plugs and wires, we were both a bit cranky. I'll spare you some of the graphics – but understand that they measure everything that goes in and everything that comes out of you after surgery. She wasn't measuring what was coming out and she let it be known that she couldn't care less what I thought of that. So I just went and asked for my meds and went to sleep. By the next morning, she was nicer and actually acknowledged that she had been in a foul mood when she got to work the night before, so we parted as friends and all was well.
Instead of confronting her, I just went to sleep and all was well. Another lesson learned.
The day nurse on both Wednesday and Thursday was Bernard, a brand new nurse who'd gone to nursing school at night despite the fact that he had a good and well-paying job previously because he needed to do work that was meaningful. Bernard and I were a match made in heaven, both of us spending our lives earning less money in exchange for better kharma! Especially because he was new, he was very careful and very attentive, although I think Bernard is the rare person doing the right thing for the right reasons, and I don't think time will erode that. I was really lucky to have him.
Dad and I actually finished the NY Times crossword puzzle on Wednesday. It was kind of funny – he did most of it and then handed it over to me while I was still on dilaudid, and I actually got the rest of it!!! Is it possible that I function better on narcotics?!
University of Michigan Center for Managing Chronic Disease. Her grant-writing staff did all the heavy lifting on this, and it looks like it really may come through. It will be our first big grant, and the prestige of being an NIH grantee can only help us with other funders. When I saw the email, I sort of panicked, but once I had a chance to step back from it, I realized this may well be a very good thing.
My friend Gordon came by toward the end of visiting hours on Tuesday night. Mike and his family sent gorgeous flowers, as did my brother and family. People were really good about not calling, which I appreciated because I really needed whatever rest I could get. One of my parents' oldest and dearest friends came by briefly on Thursday and it was wonderful to see her. But for the most part, it was me and Dad, walking, doing the crossword puzzle, and dozing (me, not Dad, at least as far as I know). My BlackBerry worked, so I was in touch with by email, and I spoke with my assistant Celeste on Wednesday and Thursday – she had things well under control. It was a perfect time to do this, over the July 4th week-end, because things at work were slow, so I was really able to relax.
Until I got a 2:27 pm email on July 3 from the National Institutes of Health asking for "lengthy" additional information no later than July 15 for a grant proposal that's pending. The good news is that I think this probably means we're getting the grant. The bad news is that I have to do this by July 15. My first reaction was that this was impossible – how could I ever get this done? But the email came while I was dressing and getting ready to go home, so I had to set it aside. After getting home and looking at it in more detail, it doesn't look as bad as it did at first. It will get done. And we may really get an NIH grant, which is beyond my wildest dreams. Here's Gloria once again connecting me with a wonderful woman, Noreen Clark, who runs the
Another lesson learned. I set it aside, then read it carefully, and realized it would be okay. No hysteria.
In a stroke of continuing good luck, I also had a nice roommate. She'd had surgery and then got a bad infection 3 weeks later. They had her in the hospital for IV antibiotics for a week. I felt badly for her because she felt and looked fine, but they wouldn't let her go until the full 7 day course of antibiotics was finished. But she had a lot of family locally and was rarely alone.
Anyway, I got myself a dose of Percocet before getting in the car to drive home. We were afraid of the July 4th traffic, but we didn't end up leaving NY until about 6 pm, and we had no trouble at all. We even got to the pharmacy to get my prescription filled before it closed, so we didn't have to go searching for a 24 hour pharmacy. Everything just went perfectly.
THIS DOESN'T HAPPEN TO ME!!! My life doesn't go perfectly. But hey – maybe it does if I let it? Maybe, as my friend Terry says, good comes from good, so I have some credit stored up? I don't know why or how, but I may no longer have cause to assume that my middle name is Murphy and everything that can go wrong will do so. Because a whole lot of things could have gone wrong with this surgery, and nothing has. Sure, I have to finish the recovery process – my plumbing still isn't working perfectly yet – and this probably won't be my last surgery. But I have amazing people pulling for me. Mike and his family, the Pearl Jam fan-based charity Wishlist, a whole bunch of good friends including a very special one in Scotland who sent me a ton of See's lollipops (if you haven't had See's lollipops, run – don't walk – and get one) and Celeste, both of whom made sure to keep aggravating people away from me. And my Dad – this is the first time he's met Dr. Scherl, whom I've been seeing since 2002, and the first time he's met Dr. Milsom although he's operated on me 3 times before – my Dad came through, which I think was as much a gift for him as it was for me.
I still have a way to go. No lifting for a couple of weeks. There's still pretty noticeable pain, and I'm still very tired. But this simply could not have come off any better.
The story of this surgery is not over. There are the inevitable insurance glitches and all of that, of course. And you can't claim victory over post-op infections and hernias this soon. But the really important part is over. Once I heal, I should be pain free. Advocacy for Patients will be fine. And I may actually have to admit that I am luckier than I ever imagined possible. Jennifer
The Surgery Saga: Chapter Eight
Posted on 03:55PM (EDT) on 2008-06-30
Okay, it's finally the day before the big day. It was great to have such a busy and fun week-end. It didn't leave me a lot of time to dwell on fear and all that.
The pre-show Pearl Jam fan-based benefit was fabulous -- the venue was packed and they raised a TON of money for us. And I got a wonderful collection of t-shirts and tote bags and all sorts of swag -- very cool and very generous. They sold out of EVERYTHING -- it was quite something. Even my Dad showed up!!!
Then we went to the venue to see Mike, and we hung out backstage with him for awhile. He secretly made arrangements for us to watch the concert from the side of the stage. Stone and Jeff put together the setlist (usally Ed does it), so it was a lot of deep cuts and very hard rock 'n roll, with only a few of the more standard songs that get radio play. Mike kept pointing and waving at us during the show. There were two encore sets -- before the first one, Mike came over and hugged me and asked me if I was having fun (DUH). Before the second one, he brought me and my friend bottled water so we didn't dehydrate. He was so generous -- it was really touching.
Saturday I went to New York to hang out with Mike's wife and ADORABLE baby. We had a really nice day walking around New York and shopping (not for me).
Yesterday, I just slept and slept.
Today's been a little harder. I've been trying to keep on a good face and respond to phone calls and emails as best I can. It's been hard, though, to keep it together. I'm ready for tomorrow to come and go already. Was it a laparoscope or not? If only I knew the answer to that question, I could probably relax about all this. But until I know if I'm going to be recovering in 10 days or a month, I'm pretty stressed. It's hard not to be with all the new work that keeps coming in. With the July 4th week-end in the midst of things, missing 10 days wouldn't be a big deal at all. If it turns out to be more, it's going to be hard for me to lie in bed relaxing while all h*ll breaks loose.
I keep trying to train Emily (the cat) to pick up some of this slack, but she's a lazy good for nothing -- well, at least as far as work goes. She's good for a lot of other things, though. I will miss her at least as much as she misses me. I miss her already.
I have a ridiculously huge suitcase all packed. I decided that, even if they don't have wireless internet, I'm taking my laptop so I can watch DVDs. I got Into the Wild for my birthday, which I LOVE, and I have 3 unopened envelopes from Netflix. And then I decided to bring a load of CDs and a personal CD player. All that plus toiletries and there isn't much room for clothes!!! But that's okay since I'll mostly wear hospital gowns.
So I think I've pretty much gotten everything together. My head is definitely in a better place today than it was toward the end of last week. In all, I think I'm about as ready as I possible can be. Now, let's hope the surgeon's in a good mood!!!
I wish I was going to be able to post here from the hospital, but their website says no cell phones or wireless internet, so if that's true, I'll catch you on the flip side. If, by chance, I find a spot with wireless internet, you'll be the first to know.
Meanwhile, lots of good thoughts would be much appreciated. See you soon! Jennifer
The Surgery Saga: Chapter Seven
Posted on 10:19AM (EDT) on 2008-06-27
Wishlist fundraiser being held for Advocacy for Patients before the show. We will hang there and try to have some fun while also raising a few dollars to help us continue to provide free information, advice, and advocacy services to the chronically ill. Once the doors at the venue open, we will go backstage so I can see my friend Mike McCready, the Pearl Jam guitarist and all around great guy. Then we get to rock out -- has there ever been a really bad Pearl Jam concert? I confess I didn't know their music until I met Mike through our connection as fellow Crohn's disease sufferers, but they are one of the best live bands I've ever seen (and I am a Springsteen fan, so saying Pearl Jam measures up is a pretty big statement). Then tomorrow, I will go see Mike's wife and child and hang with them for awhile. Sunday and Monday are surgery prep and last minute everything, and then it will be here. And then it will be done. I cannot wait for this to be over. I convinced everybody that they had to let me wait until after Pearl Jam was here, but the truth is that it's been too long a wait, leaving me too much time for too much stress.
Well, it's finally Pearl Jam day, which means I'm in the home stretch towards surgery! This day is the reason I put off the surgery until July 1. We will close our office at about 1:30 pm and head off to the
Anyway, I'll check here on Monday and give you one last farewell post when I'm in full surgery mode, and then I'll see you on the flip side. Jennifer
The Surgery Saga: Chapter Six Postscript
Posted on 11:28AM (EDT) on 2008-06-25
The offline responses and reactions to my last blog entry have been surprising and concerning, so I'm writing to respond and maybe clarify.
First, there was the suggestion that I might be suicidal. I am not. I believe that it is intelligent to have a living will and to bring a copy with you if you are going to have surgery so that it will be in your chart. But I have no thoughts of doing anything to harm myself.
Advocacy for Patients with Chronic Illness -- would take all of this as a negative and not want to fund us. I'm not sure I really understand what that's about. When I found out I was going to have surgery and asked Revolution Health if they would like me to blog about it, the agreement was that I would write about all of it -- medical, emotional, financial -- all of it. If I'm not going to be honest about feeling scared and alone, then I ought to quit right now.
Second, there was the suggestion that people -- specifically funders who support
Some of you have posted incredibly supportive things in response to earlier posts and I admit that surprised me. Here I was, writing something that is intended to provide a benefit to other patients who might be going through similar experiences, and several of you offered me support. That was a wonderful surprise for which I am most grateful!
But this, I don't get. What did I say that would drive a funder away? That I feel alone and afraid? That I don't know how I'm going to recuperate now that my house has been overrun by business? That I just want to be left alone? These are honest, natural emotions coming at a time of great stress, especially if you add that I'm far from over mourning Ruth's passing. Assuming any funders actually are reading this, I confess that I just don't get what the big to-do is about. Should I be able to get through major surgery without any negative emotion? Should a funder not fund us because I'm scared, or because I feel alone? (After all, I'm the one on the operating table -- ultimately, I think most patients ARE alone in that sense.)
I run an organization that represents the chronically ill, and I am chronically ill myself. If I don't talk about what it's like to be sick in all its myriad aspects, then who will? I feel like what I'm doing is "coming out of the closet" so that other people will feel okay about doing the same. I'd like to think our funders would want to support that. While I work my butt off to raise enough money to keep us going, I suspect that a funder who didn't want me to express how a chronically ill patient feels going into surgery isn't a funder who's going to want to support us in any event. I don't want to turn anybody off or turn anybody away, but this is what we do -- we are the voice of the chronically ill. We is me. If I'm not candid, I'm not serving the organization and its mission of protecting and promoting the rights of the chronically ill.
article in today's Hartford Courant about the benefit that Wishlist -- the Pearl Jam fan-based nonprofit -- is holding for us before the Pearl Jam concert on Friday night. In it, Pearl Jam guitarist Mike McCready is quoted as saying "Jennifer Jaff is one of the best advocates for patients I have ever seen. It's super-important for her to fight against the insurance companies that will deny people any kind of coverage for their pre-existing conditions. The work she does is justified, and I just love it." Mike and Pearl Jam are among our largest funders. I think it's fair to say that they're happy with the work we are doing!
Just as I am determined to be honest here, I hope that you readers will be honest, too. There's a space to comment on blog posts and I welcome your comments. If what I'm saying turns you off, tell me why -- teach me. I want to understand. But I can't very well respond to nameless, faceless people who, I'm told, are reacting in a way I don't intend. If I can "come out of the closet" to help you understand what it's like to be in my shoes, perhaps you can come out, as well, to help me understand what it's like to be in yours. Jennifer
The Surgery Saga: Chapter Six
Posted on 02:17PM (EDT) on 2008-06-24
It's a week from today. In some ways, I did too good a job of getting ready. The big cases are all either resolved or at a stopping point. This would be good if we weren't still seeing a daily influx of new cases. I have no clue how I'm really supposed to be gone from here for even a day. But thankfully, we are sound enough financially that I'm sure Advocacy for Patients would survive.
On the other hand, I feel like I'm getting ready to go on vacation! Just to get out of here will be a relief. I had a horrible experience with the father of a young child who was verbally abusive enough to the child's doctor so they "fired" him, and then he decided to be verbally abusive to me when I wrote a nice letter trying to get the doctor to take him back. He said he would never "say the right things if he doesn't believe them." Hmmm -- not a great negotiating strategy. Don't we all say pleasantries when need be to tend to a relationship that's in trouble, even if we don't feel all that pleasant?
Then the private school case completely fell apart. Dead silence after I sent my letter saying the deal was off and we need a new one. I can't blame them.
And the diabetes case -- it blew up because the doctor's office doesn't want to be involved on a day-to-day basis, so now the school wants that in writing -- doesn't that sort of ask them for exactly the day-to-day involvement they just said they didn't want? And apparently it doesn't matter that they said this to me -- my honesty and integrity are not a given, it seems.
And on and on. I'm sick of it. I'm sick of telling people I'm having surgery and they hardly miss a beat before resuming their own tale of woe. I'm pissed that I lost a filling and have to go to the dentist in the midst of everything else. I'm just pissed, I think.
ibdsucks.com, which is a patient-driven website for inflammatory bowel disease, so I was up half the night deleting every post I've ever made there -- a bit of an over-reaction. Every time my email sound goes off or the phone rings, I get angrier. Now who wants what from me? When do they stop taking and start giving?
So have I gone from the denial stage to the anger stage? If so, I sure hope the acceptance stage is right around the corner because I'm not enjoying myself these days. Someone gave me a hard time about a post I made on
This is REALLY not like me and I'm sort of embarrassed to own it. After all, my role in this world is to take care of other patients. Stomping my foot about feeling like people take and take and don't take care of me is really poor behavior. And yet, that's where I am today.
I read a book once that applied Elizabeth Kubler-Ross's 7 stages of grief to chronic illness -- whenever you come out of remission, you start at stage 1 (denial) and then move through the whole process. Losing Ruth last week didn't help me to distinguish between my grief at her loss and the grief I'm feeling because I know with surgery things get worse before they get better. Indeed, there's been a lot of loss -- my friend Jan's cat Shadow, and my friends Robin and Joe's long-time best pal Riley boy is not far from it, I learned yesterday. My Board President and good friend Tom's dad died on my birthday. Tim Russert, for goodness sake, and George Carlin, as well. Too much death and dying to be able to sort out all of my emotions -- which are about death and which are about surgery?
As I swam this morning, I thought I have to remember to tell the surgeon that if I go, he should just let me go. I don't want blood transfusions or a defibrillator or anything. I just want to go. I'm so stressed that it seems like the only way out. Who thinks of surgery as vacation? It's nuts, but it's real and it's me. When I think about the piles and piles of work I will be coming home to -- and it's in my home, so I don't get to leave it in the office and deal with it when I'm ready -- I get angry more than anything else. Don't people get that I'm frigging having surgery? That I'm being cut open for the 7th time? That I'm going to be in pain? That recuperation is not really optional? Or it is that I give everyone the impression that I can do it all without even the smallest hiccup?
I want to go home, but I have no home any more -- it's all my workplace. I want peace and quiet and partners who will cover for me. Uh-uh. Celeste and Nicole will do their best, but they're not lawyers and can't pretend they are. It all has to wait for me. I'm trying to convince myself that I really shouldn't try to work when I'm on heavy duty narcotics, but will that just mean I'll stop taking pain meds sooner than I should?
I just don't see this going down in a manageable way. I see myself back at work in days rather than weeks. I see myself in real trouble but nothing to do with it, nobody to help. It's not that I won't have help -- Celeste knows I'm totally freaked about what my desk will look like when I come home, so I know she'll hide it downstairs in her office and bring it to me as I can deal with it. But when can I deal with it? There are people who seem to think the day I get home is the day I'm back to work. And some of them have even had major abdominal surgery and they still think that. I guess I'm sort of their safety net, so they need to think of me as healthy, but I'M NOT HEALTHY. I need time. I need quiet. I need to sleep and rest and recuperate.
What am I going to do? What if the surgeon can't do it with a laparoscope and tells me to take a month off? That means at least 2 weeks (whatever he says I will give him half). How do I manage this insanity for 2 weeks with people working in my house, phones and faxes ringing, emails coming at lightning speed?
I'm angry because everyone won't just leave me alone. I'm scared of what will happen in my absence. I'm angry and scared because -- really because -- I'm sick and somebody's going to have his hands inside me and that's just really creepy. And I have no control over any of it -- no control over the surgery, for sure, and no control over what work won't sit still in my absence, no control over how long it takes for me to be up and around (or very little control).
Ugh. I'm just a really cranky, angry, tired, scared little girl. Who's taking care of me? Jennifer
Things Everyone with a Chronic Illness Should Have
Posted on 04:24PM (EDT) on 2008-06-19
And a book to write.
My cat is Emily. She is by far my best friend. When I was too sick to leave my house alone, Emily and I spent an awful lot of time bonding. It's pretty funny to see us together. When I call her, she comes, like a puppy. When she's mad at me -- especially if I'm away overnight -- she leaves me not-so-lovely things to discover. She sleeps most of the day, but when she hears me talking to someone, or thinks maybe she's missing out on something exciting, or even when she just needs a scratch, she'll come into the office and visit. Right now, she's shedding all over my assistant Celeste's nice black pants -- but we tolerate this from Emily because she's very special. Emily is 5 pounds full grown, a runt. She wears a collar with a bell on it so I can hear her coming. She sits on top of me while I sleep most nights -- whatever the highest point is -- a hip, my butt, my tummy.
I am very ritualistic. Every day, I get up at 4:30 am, answer email, go swim, come back and have a soy chai latte (my excuse is that soy milk is good protein and I'm basically living on liquids these days), and then work. After work (whenever that is), I go downstairs, take meds, try to eat something, and then go to bed. She knows this whole routine. She knows when it's time to go take a shower, when it's time to go to bed, which is her favorite time since she gets me all to herself. It's really funny how alike we've begun.
I cannot imagine life without her. I live in fear of that day. I can't imagine loving her any more. She makes me laugh no matter what. What greater gift could one being give another but laughter?
Hopefully, I don't have to think about that for a long time. We think she's about 13 years old, but she still plays like a kitten. I need her to stick around for a really long time.
Computer. You cannot be sick and stuck in your house without a computer. First of all, you wouldn't be able to read this now if you didn't have one. But it also connects you to the world. Every day, I read the Hartford Courant and NY Times online. I get about 100 emails a day, and write a whole lot of them, too. Being housebound without a computer is, to me, unthinkable. For me, to a large extent, computers have replaced phones as the best way to reach people.
Friday Tired when I was really, really sick. It's my story as a patient and patient advocate. It's a quirky collection of short essays -- as sick as I was, my attention span was short, so the chapters are short. I think it's sold fewer than 100 copies and that's okay with me. I wrote it because I needed to write it, not because I needed anybody else to read it.
A book to write. I wrote
The only problem is that it's finished. And this blog has sort of become my proxy for writing a book -- each post is a little essay that I hope you enjoy and learn from. But there's no good alternative to a page-turner as far as I'm concerned. So I guess I need to start a new book one of these days. Hopefully, my upcoming surgery will be a quick recovery and I won't have all that time on my hands, but if I do, I undoubtedly will write, whether it's here or in a book or in emails. I suppose I should say WARNING: I am going to be on narcotic pain medication so don't ask me anything that matters from July 1 to about July 15!!!
Anyway, that's my thought for the day. A cat. A computer. A book to write -- or a blog. I hope you have all three. Jennifer
The Surgery Saga: Chapter Five
Posted on 04:41PM (EDT) on 2008-06-17
I'm at that point in getting ready for surgery at which there is too much to be done but nothing can be done quite yet. I have 6 big files that have to be resolved and there is pretty much no movement on any of them -- it's making me nuts because I'm waiting to hear from other people. I've done my thing, and now it's out of my hands. I HATE that. Think maybe I'm a control freak?!
The school cases are still really out of control. I thought the diabetes case was finished, but mom had just a few more changes, and now I'm waiting for opposing counsel to say okay or not. Then we have a private school that told a family that their child would not be welcome at their school next year because her illness had "taxed the system." Since it's a private school, our remedies are limited. All we want is to salvage as much credit from this past school year as possible, but they're setting up roadblocks at every turn, so I wrote the nuclear letter threatening to involve a "third party," and am waiting for the explosion. Then there's the California case involving a teen-ager with Crohn's disease. The teachers and school principal agreed that he could take incompletes, but the counseling office wanted all incompletes converted to failing grades. Ugh. I think we're close to a resolution there. And then there's the college student who was declined any and all accommodation for no reason that anybody can articulate. I've told them they have until the close of business today to come up with a reason or we're filing a complaint tomorrow. At least the case will move one way or the other in the next 12 hours or so.
Those are the school cases. Then, have you read about United Airlines cutting back and doing layoffs? Well, I've had a string of patients who are out on medical leave all of whom are being told their medical leave is over and they must return to work -- so they can be laid off, we assume. I have found them a lawyer who can represent them all, so that's good, but in the one file I am still trying to resolve without litigation, we're waiting for a letter from the doctor. And waiting. And waiting. And it's Tuesday and we're still waiting. Her leave is going to run out, but we're waiting.
And finally, there's an insurance appeal. We should have medical records today or tomorrow. More waiting.
I'm really not so good at waiting.
I'd like to pack my bag for the hospital, but it's 2 weeks away. More waiting.
Making lists instead.
I'd like to get my meds refilled before I go into the hospital. But my insurance won't allow the refills until 3 days before they expire, so I can't do that today.
I'm working on an email to my assistant and law student intern, but I can't finish it until I know where everything leaves off when I go into the hospital. Waiting again.
I have to get out a press release tomorrow. The emails are all ready to go, but it can't go until tomorrow. Yup, still waiting.
Pearl Jam is here on Friday. YAY! My one fun day. A fan-based nonprofit called Wishlist is throwing us a benefit the afternoon before the concert, so we're closing the office at 2 pm on Friday June 27 and heading out to the benefit, then to the concert early so I get to see Mike (I know, that's me dropping names again, but he's really a normal guy and my buddy) before the show. Then Boston Saturday to see Mike's wife and baby. Then Sunday and Monday are surgery prep, payroll, end of month paperwork -- FINALLY the wait will be over, like it or not.
As much as I am driving myself nuts over all the waiting I'm doing on files and stuff, the truth is that what I'm waiting for is the moment when I wake up after the surgery and find out if it was done with a laparoscope or not. That's the whole ball game. If it's a laparoscope, I miss a week to 10 days of work and I'm fine. If not, not. And as much as I drive myself insane trying to control all of these other things, what I really want to control is the surgery -- the one thing on which I have no vote, no decision. I've actually thought this: The pain isn't really THAT bad, and since Gloria taught me how to make energy shakes, I can live on liquid, so maybe we should forget the surgery entirely!!! Nice thought, but obviously dumb.
Oy -- I just got a letter from the private school. They need more time. More waiting.
Patience is not one of my strong suits. Today, my lack of patience is driving me -- and probably everyone around me -- nuts! Jennifer
The Surgery Saga: Chapter Four
Posted on 04:16PM (EDT) on 2008-06-12
If I didn't know a lot about how the health insurance system works and have a few connections, I would be in big trouble. Indeed, despite paying $800 a month for my health insurance, it looks like this upcoming surgery may end up costing me as much as $5000 out of pocket. Here's the story.
I've previously explained that my out-of-network benefit pays 80% of the maximum allowable amount (MAA). The MAA is pretty much whatever the insurance company says it is, it turns out. My surgeon's office faxed me an estimate of the surgery fee. On the estimate, it said he was doing two procedures: a lysis of adhesions and a hernia repair. They quoted the full price for each, as if it were two surgeries on two different days. $11,500!!!! I first argued with the doctor's office, explaining that I know enough about medical coding to know that they would never bill for two full procedures like that. If it turned out that a surgery was more complex than anticipated, they would add a code that indicated the level of complexity. The woman at my surgeon's office refused to believe that I understood coding and kept trying to explain it to me. I finally crossed out the hernia repair (the surgeon doesn't think I have a hernia) and signed the estimate and sent it back.
Thinking better of it later -- after all, this man is about to cut me open, so I don't want him angry with me -- I called back and asked her to fax me a clean estimate that I would sign as-is. She never faxed anything -- until this morning, when lo and behold, she sent me an estimate that only had one procedure on it. Hmmm -- maybe I did know a little something about coding after all!
Then I decided to call the insurance company and get an estimate. I actually know one of the lawyers there from my days at the Attorney General's Office, and he suggested that I request the estimate, so I did. The MAA came back as EXACTLY what my doctor charges. Now, what are the chance of that? The MAA for this surgeon's office visit is HALF of what he charges, but the MAA for surgery is exactly the same? If I had to guess, I'd say my friend in the legal department may have had a little something to do with that. Who knows what I'd have been told if I were just anybody. Indeed, how many of you would know you could ask for an estimate of the MAA in advance?
Then there's this stool test my doctor wanted me to have. No in-network lab does it, so I knew I might be stuck with the bill. I called my doctor's office and they called me back and said the test costs $156. Okay -- I can live with that. I had the test done. But I never got a bill or an explanation of benefits, so I've been trying to keep track of the claim. It turns out that it was submitted to New York Blue Cross using my Social Security number instead of being submitted to Connecticut Blue Cross using my ID number. The claim had been denied because I didn't exist in the New York system. DUH! But get this -- the amount of the claim is $375, not $156. I was livid and I called my doctor's office and said so. I'll probably pay for that some day, but it makes me mad that, when I'm smart enough to ask the question, I still end up with the wrong information, and it may mean I have to cough up more than twice of what I had been told the cost would be. I won't know until they actually bill insurance correctly and we see whether my insurer pays the claim.
What ever happened to the customer knows best? We are consumers of health care. Doctors need patients if they want to make a living. Yet, some of them seem so cavaliere about how much money they're costing you, as if that doesn't matter. Of course, it shouldn't matter -- we should all get the medical care we need regardless of what kind of insurance we have. But it simply doesn't work like that. Doctors like mine -- docs at the top of their profession -- often don't take insurance, so it leaves the patient in this confusing place of not knowing what it's going to cost to get the medical care our doctors recommend. And we're too afraid of angering our doctors to demand that we be treated like consumers of anything other than medical care.
Here's an example. There are some blood tests that are done by a lab in California that most insurance companies won't pay for on the ground that they're allegedly experimental. But doctors who order the tests don't tell patients that their insurance might not cover it. I get a frantic call from a guy who has a bill for $500 that he has no idea how he's going to pay. Why don't the doctors, who surely know that many insurance companies don't pay for tests done by that lab, tell the patient that up front?
The thing is that I've also seen doctors "fire" patients for being a pain in the butt. So I'm actually afraid to tell my doctor I'm upset with her. What would I do if she decided to be done with me?
Meanwhile, there's absolutely no guar
antee that, if the surgeon finds a hernia, his office won't bill for the 2 surgeries. There's only a guarantee that the insurance company won't pay for both -- they've said as much in their estimate. So in the end, despite asking all the right questions and knowing all the things I know about how to work this system, I could end up having to fork over $5000 to my surgeon. And the lab bill, which may be $375 out of my pocket.
The surgeon recommends that I have private nurses for at least the first couple of nights. But how can I go ahead and spend that money not knowing whether my surgeon's going to end up billing for that second procedure if he finds a hernia when he gets in there? The whole idea of having such large financial exposure creates tremendous anxiety in me, and I understand how all of this works. Maybe I'd be better off if I didn't understand. Then I would just assume my insurance will kick in and not worry about it -- blissfully ignorant until they get the bill, and then they call me in hysterics.
In the meantime, I got a sobering reminder that none of this really matters. My friend and mentor, Ruth Pulda, passed away on Monday after battling lung cancer for five years. She left a husband and two young sons. She was a remarkable human being, one of the best lawyers I've ever known. She taught me everything I know about standing up and speaking out on behalf of those whose voices aren't being heard. The funeral was yesterday. I haven't cried that hard for a long time. There were more than 500 people there, including a bunch of state officials. She got the send-off she deserved, but I already miss her terribly.
So if it costs me $5000 to become pain free, so be it. I'm alive, and that means I still have a shot at making a difference in the world. So what if I'll never have enough money to retire? Everybody who knows me figures I'll work until I drop even if I don't have to, and they're probably right. After all, how could I ever turn a patient who needs help away? Jennifer
Get Your Guts in Gear
Posted on 01:10PM (EDT) on 2008-06-09
I spend most week-ends in bed resting so that I can make it through the week. This week-end, though, was a departure. I thought I was going to this event for business, but it was a remarkable event that you have to see to really get how amazing it is.
www.ibdsucks.com who have started up our own organinzations -- the IBD Quilt Project, my Advocacy for Patients with Chronic Illness, Inc., and Get your Guts in Gear. In addition, although not an ibdsucks.com spin-off, there's our great friend, the United Ostomy Associations of America.
There are a group of us who met on
Get Your Guts in Gear is a mostly volunteer organization that runs three bicycle rides each year -- one in New York, one in Texas, and one in Seattle -- to raise money for research and education related to Crohn's disease, ulcerative colitis, and ostomies. This past week-end was the New York ride. Bikers assembled at the Piers in Manhattan and rode their way up the Hudson River to Saratoga Springs. Since I couldn't ride a bicycle that far on my best day -- and certainly not when I have surgery coming up in three weeks -- I had to settle for driving to Saratoga Springs for the closing ceremony.
I got there and things were pretty much as I would have expected -- last minute preparations were being made. I helped fold t-shirts and then staffed the table where the merchandise was being sold -- all pretty routine.
Get Your Guts in Gear.
Then came the ceremony. A lot of us were broken up because a dear friend who usually shows up at these events was not able to be there due to her health. I think it was particularly hard for Jay Pacitti, the Director of
But then came the bikers, around the bend, pedaling the last few feet to finish a ride that was more than 210 miles long, all to support research and education for Crohn's disease, ulcerative colitis, and ostomies. You could see that there were a bunch of riders who were patients, and an all-volunteer crew of about 48 people, many of whom are patients, too. But a lot of the riders weren't patients themselves. Maybe they know someone who is. Maybe they are just decent people who want to help. Whatever their reason, their participation was a gift to every patient with one of these conditions. As a Crohn's patient, it was impossible for me not to think "these people did all this for me!" It was inspirational.
Being part of something like that -- when people come together for a common cause, to make a difference not only (in some cases, not at all) for themselves, but for others -- is always moving for me. It's why this fight I'm having on behalf of the chronically ill is, in my view, a civil rights struggle. Those riders and crewers who made that trek that ended yesterday in Saratoga Springs are part of that same movement. They raised over $200,000 in a three-day bike ride. As a patient, I am so proud and so deeply moved. As a colleague of Jay Pacitti's, I am awe-struck that he was able to build such a strong movement in only five years. And as the Executive Director of my own ibdsucks.com spin-off, I am inspired to do even more to foster our common goal of promoting and protecting the rights of the chronically ill, and inflammatory bowel disease and ostomies more particularly.
Get Your Guts In Gear's website and see if maybe you want to participate in one of their rides. Even if you're not well enough to ride, show up for a closing ceremony. After yesterday, I can personally attest to the feeling of community that is engendered by getting together with a whole bunch of people who are sweaty and tired who did something self-less to the betterment of humankind. Hail, hail to Jay Pacitti, the crewers and the riders who gave of themselves so that so many of us can benefit. Jennifer Jaff
If you're healthy enough to ride a bicycle, check out
A Break from Surgery: Heartbreak
Posted on 07:37AM (EDT) on 2008-06-05
Advocacy for Patients with Chronic Illness, right? It's wonderful work -- I really touch people's lives. But I also see a side of our society that is immeasurably cruel.
You all know that I run this nonprofit,
I have a kid with diabetes for whom the school is refusing to write a new health plan because they want control over the kid's medical care and they don't want mom involved -- the kid is 7 years old, for goodness sake! I have a kid with ulcerative colitis who got kicked out of the private school she's been in because of her illness -- explicitly, that was the reason -- and we don't know if the school will certify that she's completed 10th grade. I have a college kid whose professor won't let her make up work in the only course she needs to graduate -- she had surgery and fell behind and we're just asking for an incomplete so she can do the work over the summer and graduate. It goes on and on. A 30 year old with a terminal brain tumor whose mortgage company is foreclosing on his house, and whose wife walked out the day he was diagnosed and took their baby and won't let him see her. Yesterday, I lost an insurance appeal for a college student with MS -- she can't have the medication her doctor wants to try because it's not "unequivocal" that it will work -- it's only possible! I hope they're ready to pay for the wheelchair she's going to need.
These stories are the texture of my daily life. It wears on me, especially when I'm feeling like I'm the one who needs to be taken care of.
But it also makes me wonder what kind of people make these sorts of decisions. How do they live with themselves?
Yesterday's loss hit me hard. The patient is so young and so lovely -- I spoke with her enough so that I got a real sense of who she is, which makes it that much harder to lose on her behalf, especially when I know the decision is so ridiculously flawed.
I just can't imagine spending my life denying people access to the care they need. Or denying them their disability benefits when they're so sick that they have to crawl from the bed to the bathroom. Can you imagine a school insisting on controlling a 7 year old child's medical care? Why would they want the liability? It's absolutely completely totally nuts.
Things are tight now. The economy affects everything, including what insurance companies will and won't pay for. That means more losses than I'd like. And even though I get plenty of gratitude -- I got a very generous check from the patient with scleroderma even after I behaved like a creep -- on days like yesterday, I feel like it's impossible to really make a difference because the deck is so stacked against us.
This is a great job when you get to touch a life for the better. But when all you see are the cruelties that human beings visit on each other, it's literally heartbreaking.
The Surgery Saga: Chapter Three
Posted on 01:23PM (EDT) on 2008-06-03
When I was young -- probably too young to see this sort of movie -- my parents took me to see a movie about the Holocaust. When women who were part of the French Resistance were captured by the Nazis, their heads were shaved. Somehow, that made an indelible impression on me. Hair is sort of a big deal. Even though my hair started turning grey when I was 16 years old, I have always cared a lot about how it looked. I don't wear make-up or fancy designer clothes, but my hair gets cut every 4 weeks no matter what, and I'm very particular about it.
The picture of me on Revolution Health is with sort of mid-length hair, but with a lot of body. When I shook my head, my hair swung.
But I'm now having surgery and I need hair that can be washed in a sink in case I can't shower for a little while. So I had it cut pretty short today. It's not a buzz cut or anything, but it's short. I'm sort of in mourning about it.
It's not like someone died, but it is a step closer to the operating room.
It's starting to sink in. I won't know until I wake up whether I'm laid up for 10 days or a month. I won't know whether I will not be able to do any fundraising. I won't know if I can go to Dallas to give a speech on August 16. I can't make any plans. I don't know whether to take on new cases or not. It's all so indefinite.
What's definite is I have short hair. What's definite is that I have no control over any of this. What's definite is I'm terrified -- not only about my health, but about my life, my organization. This part feels very definite. I know it's normal, but being normal doesn't make it easier to live through.
What's really sinking in today is the uncertainty of it all. And if the worst occurs and the surgery can't be done with a laparoscope and there's nobody to cover for me at work for weeks while I'm too doped up on pain meds, what am I going to do? Yes, I have an assistant who will answer phones and get the mail, but I get 100 emails a day -- who will respond to them? And if something important comes in the mail, who will respond to it? Who will fundraise so we can get paid? What if none of the grants I've applied for come through? What if Advocacy for Patients gets in really bad shape and I have to lay-off my assistant? What if ...? What if .... ?
I can't stand the thought. I think I'll go back to focusing on my hair. It's easier. Jennifer
The Surgery Saga: Chapter Two
Posted on 08:06AM (EDT) on 2008-06-02
Okay, it's hit me. I'm an emotional ball of goo.
I'm going to this event on Sunday because it's being put on by a funder and we would like to get funding from them, so I have to go to and from Saratoga Springs in one day. Well, the group listed all the other groups who are going and left us off the list. Why was it I was going?
And remember the scleroderma appeal? Well, I got it done within 24 hours. It actually came out really well -- of course, that doesn't mean we'll win, but I found an argument. These two doctors who live in a house worth upwards of $1 mllion sent a $200 donation. I sent it back, I was so pissed.
I know. I'm being a child. Believe me -- owning up to this in public is a whole lot harder than talking about the good things I do, or just about the issues. But if I'm going to let you see what surgery does to me, then I have to be straight.
I'm in tears, finally. It took several days, but here it is. Am I scared? Not really. I think what it is is that I feel so frigging alone. I resent everyone who is coming to me for help. I resent the woman who took up my swimming lane this morning. I just want to get through the next 4 weeks with me being the one who needs help. I don't have anything to give. I got a release over the week-end -- blank except for the signature. Er, maybe you could say who your doctors are so I can send them the release and get their records?
I'm so tired and so stressed and so totally overwhelmed. What will I do if I can't raise the money we need? Who's going to take care of me after surgery? How am I going to do all this alone?
Sorry. Gotta go have a good cry and allow myself an hour or so for self-pity. Then back to work. Jennifer
Chapter Two, Part Two: The Pre-Op Physical
This afternoon's fun was the pre-op physical. Chest x-ray: done. Blood draw: done. EKG: done. Brought the doctor and his nurse their birthday presents early this year because I won't be around for the real dates. My internist is the sweetest, greatest guy. I asked him if he wanted someone to call after the surgery and he looked at me incredibly seriously and nonned hard. So he'll go on the list.
What a long day. And it's only Monday. Jennifer
The Surgery Saga: Interlude
Posted on 05:56AM (EDT) on 2008-06-01
Yesterday was sort of quiet. I don't know how patients can think it's okay to call at 10:30 pm on Saturday, but other than the phone calls, things were pretty quiet. I hope to have another quiet day today.
I realize that my last entry was all over the place. The idea was to show you how all over the place my brain starts going when I'm worked up. I'll think of anything -- me, Advocacy for Patients, even this blog -- before I focus on this surgery. I can handle the thought of a laparoscope and a 2-3 day hospital stay. But if they have to open me up -- I'm just praying that's not the case.
Anyway, today is a day of avoidance, so I will watch some movies and leave everything until tomorrow. Jennifer
The Surgery Saga: Chapter One
Posted on 06:02PM (EDT) on 2008-05-30
Advocacy for Patients going while I am laid up. We don't know how long I will be out -- if the surgeon can do this with a laparoscope, I can start doing some work after a week (well, the surgeon said a week, but really, I'll be at my desk immediately). But since we can't be sure of that, I have to raise $10,000 in the next month to make sure we are set through August. Okay. Deep breaths.
So being who I am, the first thing I did was start trying to figure out how to keep
Then I started thinking about my own finances and what this is going to cost me. We have the BEST insurance known to humankind. I mean, it covers everything. But these doctors are out-of-network. My insurance covers 80% of all out-of-network charges -- great coverage -- BUT what they actually pay is 80% of what they decide is the Maximum Allowable Amount (MAA). Last month's visit to the gastroenterologist cost me $275 but my insurance paid $150 because the MAA is $187.50. The visit to the surgeon cost me $300 but my insurance paid $150, again because of the low MAA.
Then it gets really complicated. When a New York doctor or hospital files a claim, because I have Blue Cross, the claim goes to New York's Blue Cross, called Empire Blue Cross, and then Empire sends it to Connecticut Blue Cross, which is called Anthem. So did Anthem or Empire set the MAA for these doctor visits? The plot thickens.
How do you fight this? The policy says they determine the MAA based on market figures and other data. I happen to know a little something about law and insurance, and that is that ERISA -- a federal law that applies to all insurance bought through an employer -- requires "full and fair review." That means that they have to tell me what they based their decision on so I can appeal if I want to. So I wrote a three-page letter citing cases and statutes and regulations demanding that they tell me how they calculated the MAA. I don't think any insurance company will ever give anybody this information -- these are the secrets insurance companies guard like pit bulls. One of two things will happen: either they'll pay my claims at a higher rate to shut me up, or they'll fight with me, and truthfully, I will only fight this so far -- I just don't have the energy.
But I have secondary insurance! So the next step was to pull out that policy and see what they'll cover. They will cover 80% of what my primary insurance doesn't cover. So this is good. However, (1) they'll only pay 80% of the 20% of the MAA set by my primary insurer; and (2) the secondary policy is limited to a three year benefit period per illness. This is the same illness I've had all along. Will they treat this as a new illness or am I out of luck because I'm outside of the three year benefit period? So I called them and -- whew -- they will count this as a new illness in a new benefit period. Okay. So once I get the MAA up a bit, my primary will pay 80% of that, and my secondary will pay 80% of the 20% that my primary won't cover.
You getting all this?
Last time I had surgery at this hospital, I was practicing law and making decent money. Now I'm working for a nonprofit and we're scrounging. Last time, when they strongly recommended that I have private nurses, I got them. The secondary policy actually covers 80% of private duty nursing, so I thought maybe I could still afford this "luxury" this time around. However, now, a private duty nurse is $600 for a 12 hour shift -- not an unreasonable amount to charge for a professional nurse, but even if I get stuck with 20% of this for, say, 3 days (so 6 12-hour shifts), it's $720. And when I don't know how much of my surgeon's bill they're going to pay, it's sort of scary to take that on. Plus, the deal with the private duty nurses is that you have to pay each of them at the end of each shift, so we're talking about me laying out $3600 with the hope of getting reimbursed for 80% of that. That's a lot of money.
Back to anxiety over Advocacy for Patients because I can't stand to think about my own situation any more. I realized when I was trying to sleep last night that I just agreed to handle an insurance appeal for a patient who has no access to email or fax, so I had to mail him the medical records release and authorization, and he's in a weird sort of blended Medicaid/Medicare plan that only allows 60 days to appeal. That means I have to submit this appeal before my surgery, but I don't even have a release yet, so I can't even request his records. AHHHHH!!!!
And I have a summer intern starting on Monday. She's entitled to orientation and training, but instead she's walking into a panic.
And before surgery, you have to have a pre-op physical, chest x-ray, blood work, EKG -- and that's Monday afternoon. Even if I had this patient's records, I wouldn't have time to file the appeal!
And June 30 is the end of a tax quarter, which means I have to file the quarterly tax statements at the very time I'm having surgery. So I've now forecast all of June's payroll so I could prepare the tax statements ahead of time. And I know I won't be able to lift anything heavy for awhile, so I've started to stock up on bottled water and kitty litter.
Oh -- and there's the minor detail of a federal government grant due on June 13 -- the page limit is 80 pages, so you can get an idea of how much work goes into writing that, and I have a draft, but it's not finished.
Wishlist that's doing a benefit for Advocacy for Patients the afternoon before the show. Then run to the venue, see Mike before the show (I hope), then see the show, then go to Boston the next day to spend some time with Mike's wife, who's one of my favorite people on the planet. And that's 2 days before surgery!!!!!!!
And I have to go to Saratoga Springs on June 8 on business. And my niece's middle school graduation in Boston on June 19. And Pearl Jam -- there's a fan-based nonprofit called
And that's just what's been going through my head the first two days after the surgery was scheduled.
How are people supposed to do all of this and be sick, too?!
Into the Wild, which I need to see at least one more time -- it affected me so deeply (and Ed Vedder did the soundtrack, which is unbelievably great). My furry best friend Emily (in other words, my cat) is sitting on my lap as I type this -- her spirit helps me feel more calm. Somehow, I will get through all this. As I say to others, you just keep putting one foot in front of the other and eventually you get where you're going, even if you don't yet know where that is. So I'll leave you with that reflection . . . and go back to my panic!!!
Well, now it's the week-end and I'm going to try very hard to take some down time. I have a couple of movies from Netflix including
Stay tuned ..... Jennifer
The Surgery Saga: Foreword
Posted on 04:17PM (EDT) on 2008-05-30
For the past year, I have had pretty bad, very focused pain just to the left of my belly button. As a patient with Crohn's disease, I'm used to pain, but this is so focused and never moves and never goes away. I thought maybe it was a hernia, but I had an MRI about a year ago and nothing showed. So I lived with it. Until about 2 months ago, when I got nauseated. I mean a lot. Like I can't stand the smell of just about anything (except chocolate, of course). I've started losing weight (which isn't bad, but this isn't the right way to do it) and I don't eat a whole lot of solid food.
I went to my gastroenterologist a month ago and she said she didn't think it was active Crohn's disease. Based on what she heard, she thought there was a partial blockage of the intestine. Time to get a CT enterography (a newfangled kind of CT scan) and make an appointment to see the surgeon.
I saw the surgeon two days ago and I'm now booked for surgery on July 1. This surgeon has done my last three surgeries so I know and like and trust him. But just in case, when Gloria Steinem offered to go with me to this appointment, I took her up on the offer. It couldn't hurt to have a living icon with me!
Pearl Jam coming to Hartford on June 27." Pearl Jam is one of Advocacy for Patients' biggest donors; the lead guitarist, Mike McCready, has Crohn's disease and he and his wife were instrumental in starting Advocacy for Patients. Since they live in Seattle, I rarely get to see them. So I asked nicely if we could do it after that. July 1 it is.
The surgeon looked at the CT enterography, which I was able to bring him on a CD-ROM that the imaging center provided to me for free (lesson number one: don't walk out of an imaging center without your exam on CD). He did a lot of poking and prodding. The hospital where he is -- Cornell-Weill Medical College/New York Presbyterian Hospital -- has all of its medical records on computer now, so he was able to read my old operative reports and all. Anyway, he showed us the problem on the CT scan. There's a loop of bowel stuck to a piece of mesh from an old hernia repair and it needs to be unstuck. Surgery.
We scheduled the surgery for July 1. This was sort of a compromise. I wanted to wait until August. He said no, he wanted to do it on June 19. I looked at Gloria and said "there is only ONE fun thing in my life that I am looking forward to, and that's
Advocacy for Patients with Chronic Illness, and certainly since I came upon Revolution Health. So I started thinking -- how can I make something good come of this? I called my friend Jamie Diaferia of Infinite Public Relations and asked him if we could pitch this to some media -- sort of like when Katie Couric had a colonoscopy on television. I figured it might be really instructive for other patients to know what the process is like, start to finish, for someone who DOES know the system, is a lawyer, and has been through this many times before.
This will be my first surgery since I started
Then I thought: Why go to press when I can come to Revolution Health?! So here we go. You're about to live through surgery with me. As things develop, I'll post here. Maybe it will be interesting. More importantly, maybe it will be helpful to some of you. Hopefully, we'll learn a few things together. Jennifer
Who cares for the caregivers?
Posted on 05:41AM (EDT) on 2008-05-23
Well, it's Friday, which is a really good thing. With my Crohn's disease, the only way I can manage to work 15 hour days is to spend week-ends in bed. Last week-end, I spent Saturday with a small support group for IBD patients in Massachusetts talking to them about the law. It was a small group, so I was cranky about losing a whole day of rest, but there was a newly diagnosed patient and her mom there, and mom was pretty teary. We talked afterwards. It made the trip worthwhile.
But I sure am tired as a result.
Friday Tired. That's the name of my book about my life as a patient and patient advocate. It's not great literature and it won't be widely read, but it was something I needed to write. It's very me. Friday tired means being this tired on Monday.
I am what I call
Meanwhile, today will be spent writing an insurance appeal on behalf of a woman with scleroderma. She has to have all of her teeth replaced and, of course, her insurance doesn't cover dental implants. I'm not sure what I am going to be able to say, but she and her husband are going through hell and they need to take a shot at it. So I'm doing it.
Is a pattern emerging here? I spent last Saturday driving 3 hours and lecturing for 3 hours for 6 people, but it's worth it because there was a patient and her mom who needed to meet me. I will spend today cranking out a losing appeal because the patient really needs someone to go to bat for her, regardless of the outcome. On the one hand, you could say I'm a really nice and caring person. On the other hand, you could say I'm nuts for giving away so much of my time to pursuits that make only an incidental difference in people's lives. But really, it's about caregiving.
A true caregiver doesn't do what she does for any reason other than she feels like she has to. It's not about being nice; it's about feeling like, without you, these people will not make it. That probably exaggerates my own importance, but that's how it feels -- like I'm holding these people up on my shoulders. There's a sense of urgency. They have nowhere else to go. It is my job not just to be their lawyer, but to take care of them. That makes is hard when I lose an appeal I should have won -- this week, we got a decision in a disability appeal that is nothing short of scandalous -- they had a psychologist evaluate a woman with chronic fatigue syndrome, so they decided it was all in her head before they even read the appeal. Losing a case like that, despite the fact that it's out of my control, makes me feel like I've disappointed someone terribly, that I should have found a way to do better. I know there was nothing more to do. But caregivers internalize all the things they aren't able to do for the people for whom they're caring.
Advocacy for Patients with Chronic Illness, we have noted that about 2/3 of our clients are women -- not because more women are sick, but because women write on behalf of their children and spouses. Caregivers don't get paid, and rarely get thanked. I've just won a string of very tough cases and none of these patients I've saved has made a donation to Advocacy for Patients. That's not as bad as having to clean up your spouse's bathroom mess without a word of thanks, but you get the point.
A lot of you are caregivers. And I deliberately use the feminine pronoun. At
And like other caregivers, I get caregiver burn-out. It's impossible when you're the only caregiver because there's nobody to spell you. So you sacrifice a day of rest, a night of sleep, many hours of time. You stop going to the movies or shopping (except for necessities). You pray for an hour in which you are just left alone. There are days when I am this tired when every time I hear an email come in, I cringe.
I'm not sure what the answer is. I've been thinking all week about blogging on caregiving, but I haven't figured out a solution, so I suppose this is sort of a messy post, not up to my usual standards. Thankfully, I don't feel like Revolution Health's caregiver, or I'd be feeling really guilty about this, too!
But the point really is that where there are sick people, there are caregivers, and the caregivers need attention, too. They need to be spelled for a few hours here and there. They need to tend to themselves. They need rest.
So today, think about a caregiver you know and do something nice for her. Fill in for her for a couple of hours. Bring her a fancy coffee and bagel. Ask her how she's doing. Ask how you can help and really mean it.
Who cares for the caregivers? If not you, then who?
Sorry for the messy post, but I'm busy saving the world, or so it feels, especially on Fridays.
Posted on 07:57PM (EDT) on 2008-05-13
It's about 8 pm and I started working at about 4:30 am, with only about an hour's break for my usual morning swim. Do I feel like blogging? No, but there's something important that can't wait: YOU! Your medical records -- do you have them? Can you get them? Your disease -- can you spell it well enough to search for it on Revolution Health and find info about it? Your medications -- do you know if any combination of them creates a negative reaction? Do you know what each of them is for? Do you understand what is happening in your body?
If the answer's NO, then I'm not wasting my time here because YOU NEED HELP, and the only person who really can help you is YOU! I can give you a kick in the behind, but only you can be your own 24/7 patient advocate. You can come on Revolution Health and ask me a question here and there, or talk to other patients. But can you pronounce the names of your meds? If not, go to the pharmacy TOMORROW and get a crash course from your pharmacist.
The only way you can become empowered as a patient is to learn. The more you know about your disease, the more you can make real decisions. Here's an example. I have adhesions that are messing up a loop of bowel. To have surgery or not have surgery: this is the question. It's my decision. How they heck do I, an untrained patient, make a decision like this? Well, on the one hand, the last time I had a lysis of adhesions, it was followed by a massive staph infection and 2 hernia surgeries. On the other hand, if I have an intestinal obstruction and need emergency surgery, I may not get the surgeon, or even the hospital, of my choice. Been there, done that. If I didn't know what a lysis of adhesions was, I could buy into the stuff some doctors peddle -- minor exploratory surgery, gets rid of adhesions for a long time. Nonsense! My adhesions were back within 4 months of my last lysis of adhesions, and I know that because I reviewed the results of a small bowel series I had done 4 months after my first lysis of adhesions. On the other hand, the last time I had surgery locally, I almost died and swore I'd never set foot back in that place again -- so that means avoiding an emergency.
This all doesn't make my decision easier, but it makes it MY decision.
And that's really the point. Knowledge is, indeed, power. Power to make decisions. Power to challenge our doctors. Power to plan. Power to live the best life we can despite our illness.
I like to think I'm a good enough writer to keep you entertained even without educational content. But really, most of all, I want you to have the power to make your own decisions. I want you to know when you can and can't be fired due to illness. I want you to know whether you have choices among health insurance plans. I want you to know what I know because I want you to participate in your own healthcare. I want you to NOT be a victim.
These diseases take a lot away from us, but as long as we can think, we can make decisions, these diseases are OURS and WE get to say how to treat and manage them. When you give over that power to someone else -- anybody else -- you've given away the store and probably not gotten a whole lot in return.
So hold onto your power. Grow it. Make it bigger, stronger. And never, ever let it go.
Life is Worth Living
Posted on 08:32AM (EDT) on 2008-05-06
In my favorite William James essay, the author asks whether suicide can ever be a rational thought. I mean, life can be very hard. We're sick, we're exhausted, we're broke, we're living at the mercy of doctors and insurers and whomever we can beg to help us out just a little bit. There are times when it seems as though suicide makes an awful lot of sense.
Advocacy for Patients, my nonprofit. I've already had one "friend" ask what would happen if I got run over by a truck. The more realistic question is what would happen if I had to have another surgery, but the point is clear -- he was worried about his donation if I wasn't around. There are so many good reasons for me to give up. I'd qualify for disability. I could actually get caught up on my sleep. I might even be able to take a vacation.
Now, don't get alarmed. I'm not suicidal. But I got an email from a woman yesterday. It was in all caps, dripping with desperation. At the end, she said if she can't get help soon, she's going to kill herself. Part of me thought I should call the police or something and have her checked out. But she's emailed me before, so I think I know she's really okay. She's just having a terrible time.
For me, truthfully, death is the big light at the end of the tunnel. Life is really hard -- unspeakably hard. All I do is work because my illness robs me of the energy to do anything else, and working 15-18 hour days is not advisable for a person with Crohn's disease. My family is nowhere to be found when I need them. I have friends who also are donors and I'm afraid to tell anybody when my disease is acting up because they will be afraid to invest money in
So part of me craves death. It's my way out. It's the only time I will be allowed to rest. It's the end to all the struggling.
Know Your Rights Handbook has sold about 1500 copies and I've worked with over 2000 patients -- not huge numbers when compared with the number of people who need help, but not nothing, either.
But then there is this work. I help people navigate the healthcare system. I make them feel heard. I win their insurance appeals and sometimes save a life. I speak to groups of patients and we all cry together -- when I get choked up (which doesn't happen that often, but it always surprises me), it gives them permission to do the same. I am the only person in the entire United States who provides free legal assistance to patients with chronic illnesses (as opposed to specific diseases) nationwide. My
And there is where I find my answer, William James's answer: Life is worth living because we are free to make it so, from the moral point of view. Because I can choose to spend my time helping people who need my help, because the help I provide really does make a difference, my life is worth living. Even when I can't help the growing number of people who write to me seeking financial assistance that just doesn't exist -- I know of nobody who pays your mortgage because you were hospitalized and unable to work, for example -- I try hard to make sure people know I sincerely care, and I don't say "no" to them easily. It is because I am free to try to touch every life I cross paths with that my life is worth living.
Life is an awful lot different than I wish it were. Yesterday, I said I'd go to my niece's middle school graduation in mid-June a couple of hours away and immediately started to worry about how I would manage physically. I want to be able to see my nieces. I want to have fun. I want to enjoy something -- anything. I want a good reason to laugh. But I guess I will settle for touching someone else's life in a positive way. Because I am free to do so -- because I act on that freedom -- my life is worth living.
What makes your life worth living? If you don't know the answer, find one. Find someone on Revolution Health who's clearly in pain, looking for answers, and befriend them. Help them tap into resources. If they need me, help them find me. If they just need to know they are not alone, be present for them.
A life without meaning is not worth living. Whether our lives have meaning is up to us. If I could start up a nonprofit while I was too sick to leave my house, then there is something -- one thing -- you can do to contribute to the well-being of the world. Whatever you do, however you bring something good to someone else's life, will be your answer.
Life is worth living because YOU are free to make it so. I'm not saying it's easy. But what I am saying is that it's a life or death decision. Change a life. Doing so will make your life worth living. I promise. Jennifer
More About Money
Posted on 08:26AM (EDT) on 2008-04-29
It's hard NOT to focus on money in my business. At least once a day -- more often of late -- we get a call from someone with no job, no insurance, and a load of debt. I spoke to a woman yesterday who got very sick in the middle of dental school. She's now on Social Security disability -- a whopping $600 per month that's supposed to cover rent, food, and everything else she needs -- and owes about $100,000 in student loans. Some heartless collection lawyer has attached her bank account, so anything she deposits is immediately frozen, pending a court date. So she has no way to use the $600 per month -- no way to pay rent, electric bill, etc. She can't get out of the house. She can't drive. She's too sick. She is alone. Nobody helps her out. She has no food. But mostly, she has no money.
support site for patients with inflammatory bowel disease -- and found someone nearby who will bring her some food. I wrote to the lawyer and lambasted him for freezing her bank account over a $600 per month SSI check. I sent her the forms to request a discharge of her student loans based on disability (yes, you can do this). But none of that seems like enough. She's still sick and alone and broke.
So I tapped into my own little angel network -- a
It breaks my heart and my spirit to hear these stories every day, and they do come every day. But part of my reaction is my own fear at ending up in the same condition they're in. If I got sick enough (again), I could lose everything. All these folks did wrong was to get sick, and what has happened to them could happen to me, to anybody.
I wish there were answers. At least until government does something, I would ask the 10 wealthiest Americans to donate several million dollars each and every year to establish a fund to be used to help people with medical debt. There would be no hand-outs -- people would have to find a way to "pay it forward" when physically able. But in the meantime, we could do enough to keep them housed and fed and getting the medical care that is the only long-term solution. If Oprah and Bill Gates and yes, our own Steve Case were to establish such a fund, we could find other donors and build an investment strategy so that we earn at least a good part of what we spend. We could do so much good.
I think part of the problem is something I've written before. People are ashamed that they are in debt and can't pay their bills, so they hide. It's very sad that people feel as though they did something wrong when all they did was get sick. And hiding in shame keeps us hidden, keeps the problem hidden. I don't know what to do other than to be the voice of people who can't or won't speak for themselves.
I sure hope someone is reading this. Someone who can make a difference in a way that I can't. I'm so crazed over raising $10,000 a month just to meet our own expenses so I can keep doing the work I do for patients for free that I can't begin to raise the many millions of dollars that it would take to really make a difference.
So, Steve, in case you're reading this, how about you put in a call to Bill and Oprah and see if maybe the three of you can save some lives.
For our Kids
Posted on 06:53PM (EDT) on 2008-04-22
This is the time of year when schools and parents meet to figure out plans of accommodation for kids with chronic illnesses (learning disabilities, too, but my focus is chronic illness). If I didn't see it with my own two eyes, I would not believe how these children are being treated. After all, they are children.
One school district sort of asked me to mediate between them and mom because mom was being unreasonable. Like it's hard for the school to give a kid with inflammatory bowel disease an anytime bathroom pass. Like it's hard to send home assignments with her sibling. Come on -- there's no resource crunch that makes that difficult. Once they saw that I am not rolling over and playing dead, they started questioning whether the child even needs accommodations in the first place -- clear retaliation for exercising her right to seek counsel, but a problem nonetheless. Now, instead of working together for the best result for the child, the adults at the school have declared all out war. Think about the child. Put her needs first. Get over yourself and do the right thing!
I am working with the mom of a young girl with diabetes. There is a very strict protocol for administration of insulin. When the school nurses mess up, the child risks emergency hospitalization. So over the past year, twice, I've written to document a failure of the protocol. Now, the school district has hired a law firm that is making a huge deal out of something very simple -- just follow the rules and everybody will be fine!
I get that schools are as overtaxed as all of us are, as we try to get by with less every day. But to be so mean-spirited when it comes to children just baffles me.
How dare we as a society accept a system in which parents have to beg and plead for the free and appropriate education the law requires? After all, these are just kids. We owe them everything, not just as little as we can possibly get away with.
My Own Little Civil Rights Movement
Posted on 05:50AM (EDT) on 2008-04-18
Crohn's & Colitis Foundation's Mid-America Chapter. I will be giving two talks, the first in a break-out session on health insurance, and then I will be the luncheon speaker giving a talk entitled My Own Little Civil Rights Movement.
I'm off today to St. Louis to speak to the
See, I think the battle for healthcare reform, especially as it applies to patients with chronic illnesses, is the most important civil rights issue of our time. Every day, I speak to patients who can't get insurance because of their pre-existing conditions. People who are forced to choose between paying their rent and buying their medicine. People who are fired because they landed in a hospital and missed work. Children -- children -- who can't get even the most simplest of accommodations in school, such as an any time bathroom pass, which doesn't cost a school a dime.
These days, things are tougher and tougher. The economy's a mess, which means everybody's focused on limited resources rather than on how to meet the (perhaps seemingly unlimited) needs of the chronically ill. The more people become afraid for themselves, the harder it is for them to feel compassion for others.
Half of all Americans have a chronic health condition, so why aren't we organized as the largest public interest group in the United States? If we did -- if we saw this as a civil rights movement -- we would be a powerful lot. There's something about illness that drives us into our houses and into depression. Instead of being angry at a society, a system, that fails us, we blame ourselves for not being able to afford the right health insurance, for being in debt to healthcare providers, for not making it to work every day.
I spoke with a 15 year old young man with an undiagnosed digestive disease who refuses to leave his house because he is afraid of being incontinent. A former client with metastatic breast cancer cried to me before she died that she was so ASHAMED because she'd never failed to pay a bill on time before in her life.
Being sick isn't the patient's fault, and yet somehow we feel ashamed. We hide. We lie when people ask how we're feeling. Yet, if we don't get out there and make some noise, how can we expect things to improve? We have to make change. As Ghandi said, we must become the change we wish to see in the world. We patients can't wait for a bunch of healthy people to advocate for us. We have to do whatever we can to press for change on our own.
Being sick in America is way too hard. Not only do you need to master the medical aspects of your illness and treatments, but you need to learn about health insurance, the Americans with Disabilities Act, Family & Medical Leave, school laws, medical records laws, Social Security, Medicaid and Medicare -- there's nothing easy about this. But we can't let the daunting task of learning what we need to know in order to navigate the system stop us from doing it. It shouldn't be so hard to be sick, but until there's change, it is what it is. Either we rise to the occasion or it beats us down. I, for one, refuse to be beaten down ever again.
So sick as I am, I will get myself on this plane and see if I can get some patients in St. Louis to make some noise. And if you're reading this, do something today to help our cause. Get involved -- computers allow even those of us who are homebound to advocate for change. Do something -- write a Congressman or state legislator; raise funds for an organization that supports patients with your disease; learn about your illness and medications. Get involved, get loud, make some noise. We cannot resent the situation we're in if we're not willing to make changing it our first priority.
Again, if we come together, we can be the largest public interest group in the United States. My little civil rights movement needs your help. Please join me.
Medical Records: Step 1 to Being Your Own Advocate
Posted on 09:44AM (EDT) on 2008-04-12
Did you know that you are entitled to a copy of all of your medical records?
Almost every state in the country has a statute that governs health care providers' obligations to produce copies of medical records. In every state, providers must produce a copy of medical records within a prescribed period of time. In some states, if the doctor thinks providing the patient the records would be upsetting or injurious to the patient (and I'm really never sure what they have in mind here), the doctor can refuse to produce the records to the patient, but the patient can designate someone else -- usually another doctor -- to receive them. Also in most states, providers can charge an administrative fee plus a per-page fee for copying medical records, which can get quite expensive. Appendix A in myKnow Your Rights Handbook is a state-by-state summary of every medical records law.
In my opinion, the best thing to do is to collect important medical records as you go along so you're never in the position of having to request your entire chart all at once. Although I don't typically ask for copies of office notes (mostly since my two main doctors are old-school and haven't switched to typed, electronic medical records), I have every blood test result, every coloscopy, upper endoscopy, CT scan and barium study report, every operative report, and every hospital discharge summary. If you collect these documents as you go along, the doctor will often just throw it on the copy machine for you on the spot.
Advocacy for Patients with Chronic Illness have a standard medical records release that complies with federal law as well as every state's medical records law. One item is the patient's Social Security Number. The hospital rejected our request for records on the ground that we didn't provide the patient's Social Security number. There it was, big as day, on the release. The person kicked our request without reading what we submitted. Still, they made us resubmit our request by mail -- fax not allowed (why?), and so we're still waiting. And the thing is that this happens all the time. Gathering medical records can take two months or more.
Despite the strong and clear state laws, gathering medical records is the single hardest part of preparing health insurance appeals. We have a file now that we got in early February. We sent out medical records requests immediately. It's now two months later, and we're still missing records from one of the two hospitals involved in this patient's care. We at
I am thoroughly in favor of high tech electronic medical records. When I say high tech, I mean a system that allows the patient, every one of the patient's doctors, labs, pharmacies -- whomever had a need to know -- to access the records. I mean a system that will warn a prescribing doctor of a drug interaction; a system that allows any emergency room anywhere to access the patient's records with the patient's consent (so a system that can be navigated by anybody with a computer and the right ID number and proof of consent). Create a system in which a patient can provide me or other lawyers and advocates, or a government program like Medicare, with access to a secure vault (on the internet, I guess) so I can get his or her medical records in sixty minutes instead of sixty days.
This could be one of the most extraordinary developments in the delivery of health care and related services of the last Century. It must happen; it's just a question of figuring out how to implement this on a national basis, so that we derive maximum benefit from having a system in which a patient can get a consult simply by permitting access to her medical records. There are people out there smart enough to figure out the mechanics.
Healthcare advocates, clinicians, and researchers have to get the American public excited about it so it becomes an issue within the consciousness of all of us.
Money Makes the World Go 'Round
Posted on 01:11PM (EDT) on 2008-04-08
I get a lot of calls from patients who need money. They have lost their jobs. They have no insurance. Their medical bills are through the roof. They are about to lose their homes. They don't know where to turn.
Do I Have a Disability? for more on that. In addition to proving that you are disabled, SSDI requires that you have paid into the system for 40 credits, which usually means 40 quarters or 10 years, with at least 20 of those quarters within the preceding 10 years. So if you're young or were a caregiver to your children for most of your adult life, you will not qualify for SSDI.
Unfortunately, there are very few answers. The most obvious is Social Security disability. There are two kinds of Social Security disability: Social Security Disability Income (SSDI) and Supplemental Security Income (SSI). Both require a showing that you are disabled -- see my post on
SSI, on the other hand, is income based. You have to meet the very low income and resource standards. If you meet those standards, your SSI eligibility will get you Medicaid immediately, whereas SSDI gets you Medicare after you have received benefits for two years.
If you have not paid into the system for 40 credits but you live in a household with others whose income and resources are counted, you may be one of the many people who fall through the cracks and cannot get either SSI or SSDI. For these folks, most likely there is no source of cash assistance. Only New York, New Jersey, Rhode Island, California, Hawaii and Puerto Rico have state disability, which is faster and easier to get than Social Security disability. For the rest of us, it's Social Security or nothing.
www.needymeds.com to look up your medication either by brand name or generic, which should take you to the instructions for how to apply for free or low-cost drugs). But how do you pay your rent, let alone a COBRA premium if you're lucky enough to have that option? How do you survive? Indeed, even if you are eligible for Social Security, because of back-logs, people are waiting 8 or 9 months for an initial disability determination, a year for an appeal hearing, and a year to get a decision after their appeal hearing. In the meantime, what can you do?
The title of this post may create the impression that I find something amusing in all of this. In fact, there's nothing funny about it. Sure, you can find a free clinic or get free prescription medications through pharmaceutical companies (see
I want to have an answer to this question. I want Oprah Winfrey, Bill Gates, and Bill Clinton to establish a fund to help pay basic living expenses for people in need when the only thing they ever did wrong was get sick. Indeed, I spend all of my time, 15 to 18 hours a day, helping people with chronic illnesses to navigate the system, and we scrounge for money every day just so we can keep helping people for free. I want somebody -- government, the wealthy, anybody -- to end the tragedy I see every day. I want to have reason to hope that this will change. I want not to live in fear that, as I age, I will not get so sick that I cannot work, and that I, too, will end up begging from family and friends just to keep a roof over my head and a meal on the table, not to mention my medications, without which I surely would die.
Part of the problem is that the chronically ill who are in debt feel ashamed that they ended up in this situation, having bill collectors calling and sending letters constantly, and knowing that they will never dig out of this hole they are in. One patient with metastatic colon cancer told me this: "I am ashamed. I have never failed to pay a bill before in my life." She died before she was evicted, but what an awful place to be when you die.
How is it that we as a society have allowed things to get like this? How is it that the people with huge amounts of money choose to spend $40 million building a school in Africa rather than building a school that's half that opulent, investing the other half in saving lives in the United States?
I am convinced that the shame of becoming indebted forces us into silence. Many of us with chronic illnesses don't look sick -- indeed, when my disease is active, I tend to get flushed and people think that rosy cheeks mean good health. Many of us get tired of hearing ourselves complain so we stop talking.
Half of all Americans have at least one chronic health condition. If we all stood together, we might be the largest voting block in the United States. We could elect the next President -- one who has compassion for those who are ill and/or less fortunate. We could elect a Congress. We have the power if only we would come together.
So if you are reading this, I challenge you to do whatever you can to help improve the lives of the chronically ill. Call your member of Congress, your state legislators, and tell them your story, make them see what we see the way we see it. Write a letter to the editor of your local paper. Tell your story to anybody who will listen. And know in your heart and soul that you are not alone, this is not your fault, you do not deserve to be sick and broke and broken.
And any time you need a pep talk, let me know. I'll be here. And I believe that YOU have the power to change the way America treats its chronically ill. I believe that YOU have the power to force government to respond to this critical need of ours. I know that, if we do it together, we can find ways to health and well-being through advocacy and compassion.
Sometimes at Advocacy for Patients with Chronic Illness, when we finish a case, we send the patient a serenity stone with the word "power" etched on it. One day, I checked my email and there in my Inbox was the subject line "I have the power." She had received her stone. It gave her strength and helped her to believe it was true.
So here -- all of you -- take this as your power stone. YOU HAVE THE POWER. Now, use it. Jennifer
Do I have a disability?
Posted on 01:18PM (EDT) on 2008-04-07
Probably the most common question I get is "Is my illness a disability?" The answer is complicated and differs depending on the context.
If you have commercial disability insurance, your policy contains a definition of "disability." The most common definitions are (1) you are unable to perform the functions of the position you were in when you became disabled (called "own occupation"); (2) you are unable to perform the functions of any position (called "any occupation"); or (3) the "own occupation" definition applies for the first year or two, at which point the "any occupation" definition kicks in. To determine the functions of your "own occupation," you should consult your written job description. If you have never seen your job description, ask for it now, whenever you're reading this -- don't wait until you're applying for disability.
http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm. Look in the category your impairment is in -- digestive, neurological, immune, and so on -- and find the listing for the impairment you have. If you meet a listing, you should be found to be disabled. But even if you do not meet a listing, you may be found disabled if you lack "residual functional capacity" to perform any job in the economy. This is sort of "any occupation" but even narrower. Think about the receptionist who sits at the front desk and answers telephones. If you can do this, then you are not disabled for Social Security standards.
If you are applying for Social Security disability, the situation is even more complex. First, you cannot be working for Social Security to consider you to be disabled. Second, you may meet one of the listings of impairments contained in the Blue Book, which is the name of the listings of impairments. You can find your listing at
If you are requesting accommodations under the Americans with Disabilities Act (ADA), you have to show that you are substantially impaired in a major life activity. Major life activities are things like talking, seeing, breathing, walking, eating, digestion -- the basic things healthy people can do. It is not enough to have an impairment; you must have a "substantial" impairment in at least one major life activity. [Note: In the employment context, it's not enough to show that you are disabled -- you have to show that you are a "qualified individual" with a disability, which means you can perform the "essential functions" of your job with or without accommodation -- so if attendance is an essential function of your job and your disability prevents you from being able to go to work, then you are NOT protected under the ADA because you cannot perform the essential functions of your job, even if you are disabled. I will post about this in greater detail at a later date].
If you are requesting school-based accommodations under the ADA or Section 504 of the Rehabilitation Act, again, you have to show that you are substantially impaired in a major life activity.
If you are requesting leave under the Family & Medical Leave Act, you need only show that you have a "serious health condition." You do NOT have to show that you are disabled. You must submit a medical certification -- essentially, a note from your doctor reciting your diagnosis and the fact that it may lead to intermittent absences -- but not medical records.
As you can see, what counts as a disability differs from one context to the next. When you are trying to argue that you meet a definition of "disability," please make sure you are aware of the definition being used in that context. Jennifer Jaff, Esq.
How to Find Health Insurance with a Pre-Existing Condition
Posted on 05:11PM (EDT) on 2008-04-03
Three answers: high risk pools; guaranteed issue plans; and COBRA conversions -- at least, those are the most widely available solutions.
First, some of the basics. If you have group insurance through work for 18 months and then to change to another group insurance through employment with no more than a 63 day break in coverage, your pre-existing condition will remain covered. Having continuous insurance for 18 months with the last day being through an employer-based group plan and NOT having a break in coverage of more than 63 days means you are "HIPAA eligible." COBRA coverage counts toward the 18 month continuous coverage, so as long as you don't have a lapse in coverage after your COBRA runs out, you will keep your pre-existing condition coverage.
If you are entering an individual plan and you are HIPAA eligible, in some states, you do not face a new pre-existing condition waiting period or exclusion, but that's not the case in all states.
If you're not HIPAA eligible, then trying to get an individual policy is going to be tough. At best, you will have a pre-existing condition waiting period, but in some states, you will just be turned down flat, or the insurer will add an "elimination rider" excluding your pre-existing condition.
34 States have high risk pools. They are designed for people with chronic illnesses. Some have pre-existing condition waiting periods anyway, and some are good coverage with reasonable premiums, whereas some are lousy coverage with exorbitant premiums.
Guaranteed issue plans are plans that some states require insurers to offer anybody who applies for individual insurance. Again, if you're HIPAA eligible, you should keep your coverage of your pre-existing condition. If not, your state may place limitations on what can be excluded from guaranteed issue plans.
COBRA conversions are also great in some states. Those are individual policies that you must be offered when your COBRA runs out. There should be no new pre-existing condition exclusion.
www.healthinsuranceinfo.net -- click on your state and you will get a paper that describes your options in both group and individual coverage.
How do you know what's available in your state?
In addition to the types of plans mentioned above, some states and some plans will allow a self-employed individual to create a group of one.
In most states, there are options, although many are expensive and the coverage isn't always great. But in some states, it's a real struggle. Learn what's available in your state and do your research before you lose your insurance. If you leave a job, COBRA until you find a replacement.
It's very hard to establish pre-existing condition coverage, so hold onto it when you get it, even if you have to pay for COBRA premiums, if at all possible.
We'll talk about other aspects of this question over time, but those are the basics. Keep checking back here for more info, send me a question, or join my group discussion.
Know Your Rights Handbook
Posted on 05:09PM (EDT) on 2008-04-03
www.advocacyforpatients.org. All proceeds go to Advocacy for Patients with Chronic Illness.
I suppose the first thing I should tell you is that I have written a book called Know Your Rights: A Handbook for Patients with Chronic Illness, Inc. It is designed to teach you to be your own advocate. It covers health and disability insurance, Social Security disability, employment, schools, housing -- pretty much everything people with chronic illnesses need to know. You can order the book at Amazon.com or at
Learning to be your own advocate is part of living with a chronic illness. So although I'll help you on Revolution Health by answering your own questions, your goal should be to learn the ropes for yourself.
You may be victim to a disease, but you needn't be a victim in the system. The more you know, the more power you will have over the consequences of your disease. So come here and to my group, ask me questions -- but always strive to learn the tools you can use for the rest of your life as you become your own advocate.
Posted on 05:04PM (EDT) on 2008-04-03
Advocacy for Patients with Chronic Illness, Inc. I am going to serve you, Revolution Health users, just as we serve patients who contact Advocacy for Patients -- I will answer your questions about health and disability insurance, employment issues (Americans with Disabilities Act, Family & Medical Leave Act), school-based accommodations, resource location -- whatever you need.
I'm excited to start my own blog. I'm a lawyer who also has a chronic illness (Crohn's disease). I am founder and Executive Director of
If you have general questions about a certain subject matter, check back here and see if I've blogged about it yet. If not, either leave a comment on this blog or send me a message. I'll either post more general info on the subject or assist you directly with your particular problem.
Jennifer Jaff, Esq.