Rare Disease Day and Awareness

I am super excited to announce that I am now a contributor to Cognoscenti, the Ideas and Opinions page of WBUR, Boston’s NPR station. They have a great group of writers, thinkers, and innovators, and I am really grateful for the chance to contribute.

My first piece is about a cause I hold dear–rare diseases. Rare Disease Day is February 28, and in my first Cognoscenti piece I tackle what awareness really needs to be: a complement to research and innovation, not the end goal itself.

I would love if it you’d click on over, join the conversation, and leave a comment. Thanks so much, and be on the lookout for more original essays and articles soon!

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Important Update on #KidneyforMike

Since we first took our plea to find a living donor for my father public in October, we have continued to be amazed and humbled by the goodwill, generosity, kindness, and support we’ve received. In person, over the phone, and over social media, you have helped us spread the word, encouraged us, and given us hope.

Truly, the outpouring has been incredible—there is a long waiting list of people interested in donating a kidney to my father.

It has been a difficult few months and time has not been our side, but we are so grateful to announce that a living donor match has been found from that list, and a kidney transplant is scheduled for March 12. We cannot begin to express our gratitude to the donor and the donor’s family for this most amazing gift: a second chance at life.

It will be a long road yet, and in the coming weeks, we ask for your continued good thoughts and prayers for my father and our family, the donor and the donor’s family, and the surgical and medical teams who will be caring for both of them. Thank you so much!

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Pub Date: The Last Best Cure

Today is the official pub date for Donna Jackson Nakazawa’s The Last Best Cure. I will have a review in coming weeks, but check out what critics are saying:

DJN cover

“The Last Best Cure will change lives; it may even save some.” –Katrina Kenison, author of The Gift of an Ordinary Day

“This is a genuine page-turning science/non-fiction thriller!” –Sylvia Boorstein, author of Happiness is An Inside Job: Practicing for a Joyful Life

“Nakazawa has written a moving account of her recovery … it will certainly inspire others.” –Andrew Weil, M.D., author of Spontaneous Happiness

And here’s a little teaser about the book itself:
One day Donna Jackson Nakazawa found herself lying on the floor to recover from climbing the stairs. That’s when it hit her. She was managing the symptoms of the autoimmune disorders that had plagued her for a decade, but she had lost her joy. For years, she’d been living on what she’d come to think of as the “Pain Channel.” She wanted to tune into the “Life Channel” instead. As a wife and mother of two, she was determined to get her life back. As a science journalist, she was compelled to understand why her brain might be her last best cure.

Donna’s writing is a must-read for anyone living with chronic illness and autoimmune disease, and The Last Best Cure is a compelling and enlightening extension of her previous work. Click on over to her site to read an excerpt.

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Living the Dream (Or, It Takes a Village)

Every now and then, like when it’s well past midnight and I’m setting my alarm for 4:45 so I can get some work done, or when we’re trading notes on how many loads of laundry and changes of clothes Norovirus necessitated, my husband and I will mutter “Living the dream,” and smile (smirk?) at each other.

Of course we always say it in jest, and because sometimes a little levity can make another pre-dawn computer session or raging case of toddler vomit a bit more manageable.

The thing is, though, we really are. Living the dream, that is—our particular notion of what a dream should look like, anyway, and all the lack of sleep and crazy juggling and contagious viruses and daily minutiae pale in the face of that.

I don’t like winter. The days are too dark, everyone is sicker more often, and this winter there are just too many variables to manage—teaching, side projects, book launch, merit review, household maintenance, chest PT, and of course, the really heavy stuff, like watching my father’s kidney failure progress and working on the logistics of a transplant and medically complex post-op care plans. I am tired, and I just want it to be spring.

The irony that spring represents hope and renewal is not lost on me. (But really, I’d be happy with weather warm enough for a trip to the playground, or possibly a nap.)

Anyway, as we claw our way through this snowbound February (and yes, it really is starting to stay lighter later on), I’ve taken to re-framing how I think about nineteen-hour days and the often overwhelming nature of the here and now.

Living the dream. We have a happy, healthy, joyful little girl. When she is at school, she is in a wonderful place where she is loved and where she is thriving. I get to spend so much time with her every day, a lot more time than I would in other professions, and I try not to take that for granted, ever. We go to the library and playspaces and gymnastics class, we do playgroups and playdates. We read books on the couch and hide treasures in her tent and I try to say yes to finger paints more often than not—“Just throw me in the tub right after, okay, Mama?” All the other stress and sadness and obligations of life fade away.

Part of this is because higher education is a bit more flexible schedule-wise, part of this is because I am willing to work late nights and early mornings, and a huge part of it is because I work for a wonderful institution with accommodating superiors and administrators. They support me and allow me to do what I enjoy with students I enjoy. There is room for professional growth, and innovation and initiative is rewarded with responsibility and recognition.

I have an agent and a publishing team who have been equally accommodating, and whose guidance has really helped my writing career. And lately (stay tuned) some incredible writing opportunities have come my way, things I wouldn’t have thought possible if I had sought them out myself, and all I can do is be grateful and give them my all.

My husband is almost two years into starting his own business, and while the hours are long for all of us, the benefits outweigh the (many) stresses. Seeing him get great press or expand his production facilities to meet increased demand is nice, of course. But knowing he is doing something he believes in, and something that while grueling, allows him the flexibility to come to her doctor appointments, drop her off at school, and be present in so many aspects of her daily life, is even better.

Along the way, we’ve been blessed personally and professionally with mentors and cheerleaders, those whose encouragement, advice, and enthusiasm have helped us to take risks and fight for the life we want.

Way back in the day, I wrote this post on how it takes a village when it comes to having chronic illness and raising children. And it absolutely does—when she’s sick or I’m sick or we’re both sick, we need helping hands. But unsurprisingly, my pre-child understanding of that village was a bit narrow.

The village stretches far beyond those who can help out when we’re sick, or watch our daughter so I can go to the hospital. It also includes the cheerleaders and the mentors, the bosses and the schedulers and the administrative staff, the professional colleagues who go out of their way, the doctors, nurse practitioners, and nurses who manage our conditions, my physical therapists, the daycare staff, and so many more. It’s the family and friends who are a constant, and those who understand when life gets complicated and we fall off the radar.

If I’ve learned anything in the months since we started looking for a living donor for my father and we’ve witnessed the amazing outpouring of support and sacrifice, it’s that the web of people who care is intricately linked and stretched out beyond our immediate circle, and beyond the circle beyond that circle, even.

I won’t deny this is a hard season we’re in, in every sense of the term. As is always the way, it seems like there are so many exciting things going on right when so many tough things are. I know things will get easier soon, when the book is launched and I’m feeling better and the work winds down a bit. I also know that things could get much harder before they begin to get easier. I can’t wait for spring, but the enormity of what could happen between now and then is hard to translate.

For now, I am keenly aware of all the scaffolding that exists that supports us and enables us to live this dream, in all its imperfections.

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Chronic Illness, Pain and Gender, and Brain-Body Science

I’m talking about why we’ve been slow to address the needs of those with chronic illness and utilize brain-body science over at Donna Jackson Nakazawa’s blog today. I’ve mentioned before what a big fan of her writing I am, particularly The Autoimmune Epidemic, and am so excited for her forthcoming book, The Last Best Cure. (I’ll review it here soon…)

Anyway, I’d love it if you click on over and join the discussion.

 

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Cardiovascular Disease in Younger Women: Michelle’s Story

February is American Heart Month. Cardiovascular disease is the leading cause of death in the United States, and heart attack and stroke are responsible for one in three deaths, or 2,200 deaths per day, according to the CDC. Heart attack and stroke are all too familiar in my family. But this fall, stroke touched another important person in my life, my dear friend Michelle. She is a lifelong competitive athlete, and as an extremely physically fit, health-conscious young woman who was already an advocate for awareness of heart disease, she is the absolute antithesis of what you would think of as a cardiovascular patient.

And that’s the point. At thirty-two and in wonderful health, she had a stroke.

As her friend and former roommate, I have always admired Michelle’s tenacity and drive—from running marathons and competitive cycling to building her career and maintaining friendships, she does everything with gusto. She has responded to having a stroke with grace and that same tenacity, and I am so proud of her continued efforts to advocate and raise awareness about cardiovascular disease in women. Please read her story below, in her own words, and learn the signs and symptoms of stroke and heart attack.

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MichellebikeI’d like to say a special thank you to Laurie for inviting me to take part in her wonderful blog. I believe the work she is doing is so meaningful for everyone. We will all experience illness at some point in our lives. Many of us may just get the flu but often we all struggle silently with illness like pain or diabetes. I appreciate the opportunity to share my story.

I was always the “healthy” one. I’d been an athlete for as long as I could remember. I teased my family that I was going to be an athlete because they used to take me cross country skiing in the Sierra Nevada Mountains in California for hours during the winter as fun. High altitude training at the age of 7!

As a junior national athlete in rowing, I went on to row in college and later picked up running marathons for 8 years. In 2010 I found my way to competitive bike racing via triathlon. The training and female competitive spirit in bike racing appealed to me. Yet, I wondered if we could do something more then just ride bicycles. What if we could give back to the community for a cause while training and racing?

The cause for my race team, RED Racing, was inspired by the death of my father, who passed away from a heart attack in 2006. It turned out that many women on my team had their own families impacted by heart disease and stroke. While my cause was around heart health and my dad, I soon learned that heart disease and stroke is the #1 killer of women in the U.S. Today, RED Racing is a group of female cyclists committed to developing competitive racers while building awareness and supporting the American Heart Association.

Ironically, on Oct 13, 2012 I found out that this disease can affect anyone, including me.

I was riding my bike that Saturday morning with a friend. We were about 35 miles out and headed home when my vision suddenly changed. I got off my bike ASAP and thought maybe I needed to eat something so I wolfed down my shot blocks but things didn’t change. The world looked sideways. I discovered that by shutting one eye everything was fine. Closing the other eye again, everything was fine. But with both eyes open I had double vision.

I was definitely worried and couldn’t imagine what was happening. I thought, “I’ll just close my eyes and take a deep breath and this will all go away. I can handle this. I can control this.”

My friend helped me walk to a driveway to sit down and call for help. While seated I kept falling towards the right and wasn’t able to see clearly. A woman (a mom) pulled out of her driveway and stopped to check on us asking if we were okay. For the first time in my life, I actually said “no,” and asked her to  drive us to urgent care. She ended up driving us all the way back to Baltimore and to Johns Hopkins. She and my friend are my guardian angels! They really saved me that Saturday by knowing to call for help and getting me to the hospital as fast as possible.

I couldn’t make my eyesight go back to normal and in the car to the hospital things got a little worse. My speech was slurred and I threw up (although that made me feel better.) By the time we go to the hospital about an hour had passed. I had a team of 10-12 people assessing me and got to a CAT scan very fast, where the brain scans showed that I had a tiny stoke but no major damage. All tests show that I’m perfectly healthy and they don’t know why this happened. The one thing to point to is birth control.

Honestly, I’m still a little anxious by all of it. I really never thought this could happen to me. Even when I was having symptoms I didn’t think it was a stroke. I thought maybe I was tired or didn’t eat enough. This was a terrifying experience. I’m so lucky to see. I’m so lucky to be able to get back on my bike. I’m so lucky to be alive.

I’m grateful! So grateful.

Now, about 3 months later, I feel great. My vision is fine but I’m still going through some blood tests as the doctors are trying to understand why this happened. I’m off birth control and take a small 81mg aspirin daily. Now, I have a chronic illness. I have an acute understanding about how fragile life is and how quickly things can change. I’m not the only 32-year-old who has had a stroke and many of the stories I’ve heard are devastating. Paralysis, blindness, and death could have been my reality. Now I consider everything I eat. I worry about what pregnancy could bring and I live my life with an illness that is silent. Another stroke could be in my future and there aren’t many warning signs for me to show if I’m at risk. The best thing I can do is to eat leafy greens and live the best life I can.

RED Racing
big heartWe are a group of female cyclists committed to developing competitive racers while building awareness and supporting the American Heart Association. Our combined mission will be to dispel the myths and raise awareness of heart disease as the number one killer of women. We hope bike riding can be another means to empower women to take charge of their heart health, to feel young again, and to be inspired to live a healthy lifestyle. RED Racing is the avenue for us to raise awareness and support the AHA in its fundraising and awareness goals. (Editor’s note: you can check out the RED Racing fundraising page by clicking here.)

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Thank you for sharing your story, Michelle. I am so grateful you are doing so well.

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The Last Best Cure and the Future of Chronic Illness

Chronic illness is one of the greatest public health issues of our time. I wrote In the Kingdom of the Sick in part to explore attitudes towards illness, and the influence of science, technology, and culture on the experience of being a patient. To have a meaningful conversation about the future of chronic illness in this country, we need to understand the complex variables that go into our perceptions of illness and wellness.

DJN coverWhat might that future look like? In her new book, The Last Best Cure, award-winning health journalist Donna Jackson Nakazawa brings us on her quest to find out how to awaken the healing potential of her own brain, with the hope of bringing about lasting change.

As a huge fan of her previous book, The Autoimmune Epidemic, and as someone who is very much aware of the state of chronic illness in this country, I asked Nakazawa why this particular book is so important at this juncture. Her response is below:

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One of the reasons that I set out to research and write The Last Best Cure is that the numbers of Americans with chronic conditions has been escalating so fast it’s frightening. Today in the United States, 133 million Americans – one out of two adults — suffer from at least one chronic condition. These include back pain, irritable bowel and digestive disorders, arthritic conditions, migraines, thyroid disease, autoimmune diseases, depression and mood disorders, cancer, Lyme disease, fibromyalgia, chronic fatigue syndrome and chronic pain. Experts predict that these numbers, which have been rising steadily by more than one percent a year, will rise 37% by 2030.

And most of us are women. We’re more likely than men to suffer from migraines and lower pack pain, twice as likely to suffer from depression, irritable bowel disease and arthritis. And women are three times more likely than men to suffer from autoimmune diseases including lupus, multiple sclerosis, type 1 diabetes, thyroiditis, rheumatoid arthritis and inflammatory bowel disorders. Ninety percent of fibromyalgia sufferers are women. And women are more likely to suffer from a compilation of chronic conditions than are men. Lupus and migraines. Back pain and fibromyalgia and irritable bowel.

We may tell ourselves that Americans are getting sicker simply because we’re living so much longer. But a new study tells us that’s not the case. Americans of all ages up to the age of 75 live shorter lives and experience more chronic illness during their lives than in other countries. In fact, a recent study — a 378-page report convened by the National Research Council, an arm of the National Academy of Sciences — shows that not only do Americans have a lower life expectancy and higher infant mortality than most high-income countries, we are less healthy throughout our lives than citizens of 16 other wealthy nations.

And every year Americans are becoming less healthy than our counterparts in peer nations around the globe. The U.S. is experiencing a large and widening “mortality gap” among adults over 50 compared with other high-income nations. “What struck us — and it was quite sobering — was the recurring trend in which the U.S. seems to be slipping behind other high-income countries,” says lead author of the report, Dr. Steven Woolf.

We might think that this is due to gun violence, or poverty. But that’s not the case. Even Americans who possess good health insurance, are college-educated and are in upper-income brackets are in worse health than their counterparts around the world — a finding that no one quite comprehends. Woolf puts it this way, “People with seemingly everything going for them still live shorter lives and have higher disease rates than people in other countries.”

I wrote The Last Best Cure for every person who suffers from chronic conditions. We’re chronically ill and we’re getting more chronically ill as a country every minute. I wrote a great deal about why I think that’s the case in my last book, The Autoimmune Epidemic.

The Last Best Cure: My Quest to Activate the Healing Areas of My Brain and Get Back My Body, My Joy and My Life is the natural progression after The Autoimmune Epidemic. It’s about participating in a reversal trend, to reclaim good and healthy lives. As a country, as people, as individuals. Isn’t it time?

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Indeed it is time. The Last Best Cure will be out in just a few weeks, and you can check out more of Donna Jackson Nakazawa’s writing on her blog. Be sure to “like” her FB fan page for book updates and events.

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Update on #KidneyforMike

We want to share a quick update regarding our search for a living donor kidney match for my father.

First, we want to take a moment to extend our heartfelt gratitude for the tremendous outpouring of support, concern, and generosity extended to us, from sharing our urgent request on social media platforms to sending e-mails of encouragement and much, much more.

We have been taken aback by the willingness of so many people to consider donating a kidney, and by the absolutely amazing response our request generated. Feeling so much support has been an unexpected blessing in all of this. Truly, it is overwhelming. I know my father is incredibly emotional about it and humbled by it—we all are.

While we have not solidified a donor, we remain cautiously hopeful and optimistic we will find one soon, and we are extremely fortunate to have so many people willing to consider doing this. His condition has deteriorated more rapidly than we anticipated so in the interim, he will start peritoneal dialysis as a bridge to transplant.

This whole process takes a long time and inevitably includes setbacks and challenges. We will continue to update you as we can, and we ask for your continued good thoughts and prayers.

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Updates, Part 2

Remember that post where I asked you to subscribe using either the feed button at the top right or the box on the right sidebar, where you can enter your e-mail address to receive updates that way?

I did not realize that said box had disappeared into the virtual ether. I contacted The Person Who Knows Much More About Wonky Coding Problems and Disabling Features Than I Do, and everything is fixed now.

#Technologyfail.

So, if you could take a moment and sign up with either of those options, I would really appreciate it.

Thanks, and apologies for any confusion!

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New Year’s Updates

After yesterday’s reflections on 2013, I thought it was time for some more pragmatic updates and housekeeping.

I posted this on Facebook but should mention here that IN THE KINGDOM OF THE SICK received a starred review in the December issue of Booklist. It’s an exciting way to start off pre-pub activities.

Want to stay updated on book news and reviews, author events, and related publicity? Make sure you subscribe to this blog using the feed button up top (next to the social media buttons) or enter your e-mail on the right sidebar to receive posts that way. Also, if you’re on Facebook, consider “liking” my Facebook Author Page, where I will post relevant links and updates.

As always, you can find me on Twitter, too.

In addition to book stuff, I have a lot planned for 2013 on this blog, including fresh content, interviews, guest posts, and more, so be sure to stay connected.

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