It’s Paperback Release Day for In the Kingdom of the Sick!

It’s hard to believe it’s been over a year since In the Kingdom of the Sick was published. It’s been a busy spring and summer with book-related speaking events, teaching summer classes, and some medical stuff, and somehow it’s the release date for the paperback version already.

I’m really excited, and I hope that the book will reach a new audience. The issues the book raises are evergreen, and the questions I receive at panels and events and e-mails I respond to continue to advance the conversation about chronic illness in this country.

Writing a book is such an emotionally volatile process—you toil away for years, send your book out into the wide world, and if you’re lucky you get some good pub date exposure…and then life very much goes on as it was before. Well, that’s not totally accurate; I am certainly getting more sleep and sunlight now that the writing and editing and intense promotion is over, but it’s very much a process of detachment. I poured everything into each stage of the process, and now it’s out there, and I am here, teaching, writing, mothering.

I am extremely grateful for all the support the book received when it was published, from appearing on Fresh Air, getting reviewed in the Wall Street Journal, being named an Editor’s Choice for Adult Books 2013 by Booklist, to all the writers and bloggers who took the time to feature the book and post reviews and interviews. A more complete list of reviews and interviews can be found here. I am also thrilled with the opportunities I continue to receive to talk and write about gender and pain, rare diseases, prevention and public health, etc., and hope the conversations about chronic illness and the ways in which culture, science, and technology shape the experience of being a patient will keep going.

I’d love the paperback to reach new readers, and so I’m asking for a little bit of help. If you can, will you:

1. Share this post on Twitter, FB, and other sites
2. “Like” the FB page for the book to stay updated on events and relevant articles
3. Follow me on Twitter
4. If you’re read In the Kingdom of the Sick, it would be great if you posted a review on Amazon. It is important exposure, especially as the paperback debuts…

Thanks so much for your continued support, and if you pick up a paperback copy, I’d love to hear from you!

PS–Incredibly, this month marks six years since my first book, Life Disrupted, published, and it’s awesome to hear from readers regularly and know that the issues surrounding chronic illness and young adults still resonate. Thank you!

MuckFest Recap and Lessons Learned

I have so many updates to share, but figured I’d start with a quick recap of the MS MuckFest 2014. As you may know, this event was the impetus for my running training program, and while the main reason we did it was to support my brother, an MS patient, and the MS Society, it was a very personal event and milestone for me.

While I love to exercise, I am not athletic. Growing up, I was either sick at home, in the hospital, or sporting a variety of casts, splints, and braces because I got injured easily and often. True story: I broke my finger typing once, that’s how brittle my bones were from steroids. Add to that my constant wheezing and coughing, and it’s easy to see why I was a bit…lacking in confidence in athletic endeavors.

I’d been feeling pretty good heading into the race—I’d run my longest stretches without stopping and maintained a decent speed all week, and the strength training I’d been doing had definitely made a difference. However, there is still so much I am learning about myself as a runner when it comes to pacing, strategy, and conditions, and let’s just say I learned a lot on April 26th.

We were part of a larger team but my husband and dear friend and I ran as a smaller pack…we certainly weren’t the fastest, but we did every obstacle, and that was one of my two major goals for the day (and I did it without breaking, straining, or spraining anything, even!) A couple of the obstacles were truly physically challenging, but most were mentally challenging, especially the ones that involved heights or extremely confined spaces. Most were things I had never done before, and I am already looking forward to next year’s event when I will have a better idea of what to expect and will run with the confidence of knowing I can do this because I have done this.

Honestly, the biggest challenge of all was the weather: It was beautiful the day before the race, but that morning it was 40 degrees and it was pouring (cold) rain the entire time. We were in the first wave and already the hilly course was so muddy and slippery that simply trying to run them to get to the next obstacle was an event. I now understand the power of the term “bone-chilling” because jumping into pools of mud in the freezing rain is pretty wretched. We could see our breath when we hosed ourselves off afterwards. Awesome.

Still, everyone there had a great attitude about it and no one complained. The way I see it, every year after this will be easy because our first year we did it in terrible conditions. Right?

Anyway, my other goal was to complete the 5K course without walking at all, and that totally didn’t happen. Most of my runs have been in fairly temperate weather, and I learned something important that day in the raw, freezing rain. I learned it again a few days later when I ran in 93-degree weather in Florida, with high humidity.

I don’t run well in extremes. Duh, right? But it’s actually more nuanced than that. Specifically, I do not start well in extreme weather.

Once we got into the meat of the race, I found my stride and was doing great, just like halfway into my run in Florida when my lungs settled down and I found a good rhythm. But within the first 20 seconds of the Muckfest, my lungs just closed right up and I was gasping before we made it to the second obstacle. I couldn’t believe it. It was like I hadn’t just spend eight weeks running 3-4 times a week and slowly building up my lung capacity. For a bleak moment I thought I was going to need to get off the course and dig up my inhaler, but I got some recovery time waiting in line for an obstacle and eventually my lungs calmed down.

I’ve since tested this a few more times, and if I start out fast, my lungs close up every time. If I start out fairly slow and stay steady with that, I have more speed and feel better later on. It takes my lungs a really long time to catch up to the work my body is doing, and unless I want to start burning, gasping, or cramping, I need to respect that is how my body works and roll with it. I’ve been reading a lot about negative splits, so this makes a lot of sense to me. I will never be fast but I’d like to be consistent and to build onto my distances—and I can only do that if I can breathe. So slower starts, especially in extreme weather, it is.

We’re already planning on next year’s MuckFest, and I have some 5K races in mind but know I need more training before I do them. My Couch-to-5K app disappeared from my phone (eight weeks of data gone!) so I’m starting over at Week 1 and focusing on adding in more speed (but not at the start!) and more hills this time around, coupled with longer treadmill runs. I still have a long way to go, but starting over with C25K has shown me that my lungs have started to adapt.

All in all, it was an awesome day. I never would seen me doing something like this, never mind enjoying it. I wasn’t fast, coordinated, or graceful, but I finished, and that’s enough for me.

On Running and Chronic Illness–An Update

There are many reasons I decided to start trying to run. Notice how I phrased that—I am still such a novice that I can’t really say “I run” and am not even close to saying “I’m a runner” but I am almost 7 weeks into the C25K program and I’ll be the first to admit I am shocked at how much I love it.

Or to be more specific, I am pretty miserable during it, but I absolutely love how I feel when I am finished, physically and mentally. Each time, I feel stronger, I feel more confident, and I also cough up more junk than I ever have with any other aerobic activity, so I know it’s doing great things for my lungs.

Ostensibly, I first started training for a 5K because I signed up to do the MS Muckfest, a 5K obstacle course in the mud. I knew the actual running would be in fits and spurts as we moved through the obstacles, but I figured if I could run that amount, I’d be in good physical shape for the event. (I’m also combining it with strength training at the gym and Jillian Michaels’ Shred workout, to build up my core and arm strength.) The event is this Saturday, and while I have a couple weeks left in the C25K program, I definitely think it’s made a huge difference.

It’s hard, of course. The first week I almost laughed at the notion I could run more than a couple minutes without getting winded. Even though I’ve exercised regularly for years, my lungs burned the first few days. A couple more weeks in, I was logging longer running spurts but wondered when I could do a whole workout without getting a cramp from improper/poor oxygenation. I played around with when I took my inhalers and used my sinus spray, and looked for flatter routes so I could just focus on breathing—hills and speed can come in time.

Seven weeks in, I look forward to it. I still have such a long way to go but my goals are changing, too—I want to do a straight 5K event, but next summer, there is a 7-mile road race I’ve always thought looked fun. I am not fast and I am not graceful, but I now know if I keep plugging away, I will keep seeing improvement in my stamina and endurance. I cheered on runners at the Boston Marathon the other day, and was so inspired by their dedication and grace. I still can’t imagine actually running 26.2 miles (huge shout-out to my friend and inspiration, Audrey, who rocked Boston the other day and looked totally amazing when I saw her at the halfway point), but I can more easily understand why people do it.

The Muckfest was a good catalyst for running, part of it is also that running has always been something I just couldn’t do, and I hate that feeling. But it’s more than simply wanting to conquer something that has always challenged me. I explained it once to my husband as we finished a run together—that second wind they tell you about? It’s totally real. That feeling of just tying up my sneakers and taking off down the road? I have never felt more free.

A lifetime of illness, of surgeries, setbacks, crises, broken bones, etc., will shake your faith in your body. The disappointments tally up, and the sense of feeling hemmed in is profound. I am very confident in other aspects of my life, but my confidence in my body to do what I want and need it to, to depend on it, has always lagged behind. (With the major caveat of carrying a baby and keeping her safe—however rocky, my body did its job then).

So those are the reasons I started trying to run. The biggest reason I am planning on sticking with it? My three-year-old daughter. She watches us run and she puts on a headband and starts running around, too. She knows we signed up for an event and she asked to run a race of her own, and is now registered. (I am not sure which she’s more excited about—the actual running part, or the official race t-shirt she will get).

I don’t care if she ever runs a 5K, I don’t care what sport she ends up playing or if she’s ever the fastest or the first—I just want her to be confident, and to feel strong.

Pub Date Reflections, Paperback Release, Spring Events, (and More)

Thank goodness it’s April! While winter often felt endless this year, now that it’s finally spring and the illnesses and setbacks are behind us, I realize I need to post some updates about some great events lined up for the next few months.

Incredibly, a year ago today was the official pub date for In the Kingdom of the Sick. I more grateful than ever for the constant support, encouragement, and enthusiasm for the book and the issues it raises, for the press and publicity it received last spring, and the ongoing interest and opportunities to discuss these issues further. The paperback version of In the Kingdom of the Sick is set to pub this July, and I’m looking forward to more events, posts, and activities leading up to that.

On May 3, my friend Cheryl Alkon and I are presenting a session on writing nonfiction/health books at Grub Street’s Muse and the Marketplace literary conference at the Boston Park Plaza Hotel. It’s a wonderful three-day event “designed to give aspiring writers a better understanding about the craft of writing fiction and non-fiction, to prepare them for the changing world of publishing and promotion, and to create opportunities for meaningful networking.” I always wanted to attend when I was in graduate school and just starting to look for an agent, so I am really thrilled to be able to present.

If you’re in the Madison, WI area, I’m participating in a panel on electronic medical records at the University of Wisconsin-Madison on May 9. It is described as “a free public dialogue exploring electronic medical records (EMRs), a rapidly disseminating technology with great potential impact,” and is free and open to the public.

More locally, I’m participating in the “Connected Patient Panel: Exploring the Role of Online Patient Support Communities, Twitter Chats and Patient Advocacy” for the New England Society for Healthcare Communication’s Spring Conference (NESHCO). It’s on Thursday, May 15, 2014 from 12-1 pm at the Mystic Marriott Hotel & Spa, Mystic, CT.

And up next on the personal side? An update on my C25K training and thoughts on why I really like running—even if I am still a struggling novice.

Thanks again for all your support, and for listening despite the unintended silences!

On Running and Breathing (at the same time!)

It has been an extremely cold winter here in Boston (and from the sounds of it, so many places around the country.) Between absolutely frigid temperatures, a lot of snow and ice, and two rounds of viruses that lasted several weeks, I’ve had false starts with the Couch to 5K running program.

Wait, yes, you heard that right. I am attempting to run. On April 26th, my intrepid husband, brother, and some good friends are doing the MS MuckFest 2014 in Devens, MA., a 5k obstacle course in the mud. One of my brothers was diagnosed with multiple sclerosis six years ago, and my husband thought this would be a great way to show our support and would also be a great motivation for us to train together and do something together that is out of our mutual comfort zone together.

(Obligatory if completely sincere plug here: if you’re local and would like to join our team, we’d love the company! If you’d like to donate, you can do that, too.)

Now for some context, I actually really enjoy exercise and, illness and infections pending, I do it regularly. I’ve done years of ellipticals and Stair Masters, and more recently have really enjoyed classes (yoga, Zumba, hip hop, etc.) and home training workouts like Jillian Michaels’ Shred. It’s great for my mind and my stress levels, but pragmatically speaking, it is really important for people with PCD to move around and shake up these lungs of ours—ideally, this helps us cough and clear things out.

I am not at all athletic, but I have fun and I know my muscles are getting stronger, and know that is good for so many things. But I have never, ever been able to run. Ever. My chest tightens and I wheeze fairly quickly, and I get short of breath in a way I don’t in any other activity.

My goal is to be able to run a straight 5K prior to the obstacle course, because that would put me in pretty good shape physically and well, because I have never been able to run and I really want to be able to. Honestly, I am a little scared because for years I’ve told myself I can’t run, so it’s a big shift in thinking. I keep telling myself that lungs are muscles and though it might take longer than it does for other parts of my body to acclimate, and it might take longer than it would for someone without PCD and bronchiectasis, if I just take it step by step I can build up my lung capacity and train myself to breathe better when I run.

From friends and online forums, here are some basic tips I’m keeping in mind:

1. Start gradually—this is why an app like C25K makes a lot of sense to me
2. Breathe through your nose, since it warms the air and is better for your lungs
3. Cover your face in really cold weather, since the cold air effect is much more pronounced

Runners out there, what else would you tell a newbie like myself? And people with chronic illness and in particular, those with respiratory challenges, what helped you conquer the running demon? I appreciate any and all insights you have to offer!

On 2014, and Transitions

I framed last year’s New Year’s post with the notion of the competing forces of joy and sadness, hope and despair, and guilt and acceptance—so often, it seems like the most incredible and most difficult experiences happen at the same time. I knew going into 2013 that it would be an important year in many respects—my book was slated to come out in April and there would be a lot of events around that, I was teaching an especially heavy course load, and more than any of that, we were watching my father deteriorate and hoping he would undergo a kidney transplant in time to save his life.

So while I knew 2013 had the potential to be a big year in many respects, I couldn’t have predicted just how intense it would be—because even the best things can be incredibly draining, and when so many huge, life-altering things happen at the same time, regardless of how positive some of them are, it is still just intense.

I didn’t know I’d watch my father’s life be saved twice, once through an incredible living donor kidney transplant last spring, and just when we thought we could exhale, a completely unexpected triple bypass this fall. I didn’t know both my parents would end up having surgery at the same time and that we’d spend weeks shuttling between different hospitals and rehabs.

I hoped I’d have a lot of publicity for the book, but I couldn’t have predicted that I’d appear on Fresh Air with Terry Gross or publish an Op-Ed on gender and pain in the NYT, goals of mine I never thought were entirely realistic. (And as an example of just how concurrent everything really was, my Op-Ed came out the very same week of the kidney transplant—I picked up my first copy en route to visit my Dad.)

Some of my Boston-area book readings took place the week the Boston Marathon bombing and manhunt took over my beloved city, which was also the last week of classes, and several of my students had been medical volunteers at the finish line and were going through a lot.  All in all, it took me most of the summer to recover from the physically and emotionally punishing schedule (21-hour days were the norm) of the spring.

So personally and professionally, online and offline, it was a huge year, at times breathtaking and humbling in its richness and opportunity, as well as in its fear and in its losses.

I am grateful. I am starting to exhale. Slowly, I am finding my voice again. And after a year of so many big things, I am very much looking forward to a year of focusing on the smaller joys, and being more conscious and deliberate with my time and priorities.

So many things have changed since the beginning of 2013, and above all else, this is what I carry from into 2014: If you are in the right place, doing the things you’re meant to do and surrounded by the right people, everything will eventually work out—one step at a time.

Belated wishes for a happy and healthy new year!

Burnout…(And Finding a Way Back)

Now that things are settled down and more predictable after a long, hectic fall, I’ve struggled a bit to find my footing here. For so long, ideas and essays about living with chronic illness were natural and easy for me to develop: chronic illness and relationships; chronic illness and employment; chronic illness and pregnancy/infertility; and parenting with chronic illness, just to name a few.

More recently, the ideas aren’t so easy. Part of it is just plain old burnout, the inevitable physical and emotional fallout of the intensive process of researching, writing, revising, and promoting a book. If I don’t have a strong idea, I just don’t write. I can’t, so I wait until it feels right. It’s not an ideal way to keep up subscriber numbers and analytics, but it’s how I roll.

But it’s more than that, I think. I have a job, I have a writing career, I have a preschooler and a husband who deserve the best of me, I have family members with medical needs. The other spheres of my life take up so much of my head and my heart that there isn’t a lot of room left to talk about or think about chronic illness or to be a patient. This is partly possible because I am pretty stable right now and don’t have to deal with the major upheavals of my own hospitalizations and setbacks. It’s a lot harder to ignore chronic illness when its needs are immediate and non-negotiable.

Don’t get me wrong, illness is a part of my everyday life, from the crazy scheduling maneuvers to work in chest physiotherapy every day (or late at night, as it were) to running out of breath when I’m reading bedtime books to my daughter to the days when I just have no energy and wonder how I’ll last the long commute home. But papers still need to be graded, deadlines still need to be met, my daughter still has swim class, and the household still needs running. In many ways, I can’t afford to be slowed down by illness right now, and while I recognize such stability is borrowed time, I’m grateful for it when I have it.

Slowly, though, the ideas are starting to percolate again. I’m pitching ideas to editors. I’m posting here. I’m being more discerning about how much I say “yes” to and learning to say “no” more. Maybe they aren’t as personal and anecdotal about living with illness as they once were, but the ideas are there nonetheless. As a writer and as a patient, I’m just in a different place, but I’m starting to see that too is an inevitable thing, and I’m figuring out how to make these changing identities coalesce a little better.

Standing at the Edge of the Universe

It’s been almost three months since I’ve written, an unintended break that’s been weighing on me.

In August, a pretty serious health crisis happened to my father (and only a few months out from a kidney transplant, it was particularly complicated), one we hadn’t seen coming at all.

“It’s like standing at the edge of the universe,” one of his surgeons said to the two of us, referring to what would happen if we didn’t proceed with the major (and risky) surgery. And that one phrase seems to encapsulate the experience of acute, serious illness so well.

Overnight, my siblings and our spouses were whisked out of our daily lives and into waiting rooms and consultation rooms. The waiting, that is the all too familiar part—we have a routine now. We bring iPads and laptops, share phone chargers and delegate “to call” lists for updates. One makes coffee runs, another is responsible for cracking the jokes, another serves as the contact person for the surgeon and the floor. I usually take the pre-op shift so I can lay eyes on him before he is wheeled back; once he’s in recovery, someone else stays on later.

Since my father provides a lot of care for my mother, we split our time between his ICU and step-down floors and doing overnights at her house, and then after she too had surgery, we traded visits between different hospitals, rehab centers and respite care facilities.

More than two months after it all started, both parents are now home together and settling in. Both are recovering well, and have a renewed sense of hope and possibility.

There is much to say about this experience: the amazing opportunities medical science and premium health care offer, the stress of illness on families, how fortunate I felt I had siblings to help dig through the trenches. But for now, all I will say is we’ve pulled back from our perch at the edge of the universe, from the tense, draining unknown.

Things are calmer now, more predictable. I’ve found a groove with my courses, our new schedule, and lots of other changes. I hope to back here more regularly, and back at my usual writing spots like WBUR’s Cognoscenti and Psychology Today.

Thanks for hanging in there through the silence.

Lessons from the Whole30 Challenge (Or, the importance of mindfulness)

Somehow, it’s already August. I always think summer will mean extra time, but with freelancing, summer classes, and adventures with my two-year-old, the weeks have flown by, and the hours are full.

If you read my interview with Dr. T. Colin Campbell, author of Whole, over at WBUR’s Commonhealth, you know nutrition has been on my mind lately. For the past few months, I’ve incorporated a lot more vegetarian meals, eliminated dairy, and really examined what we buy and what our habits are.

And then my husband started doing the Whole30 Challenge—you know, the one that’s all over the Internet these days and often invites comparison to the Paleo diet. In case you’re not familiar, here’s a quick summary: for thirty days, eliminate dairy, gluten, all grains, legumes, sugar (including honey, agave, and alcohol), seed oils, etc. to calm down the inflammation in your body. Basically, you should eat plenty of clean, whole foods–plenty of vegetables, along with protein, fruit, and healthy fats like olive oil, coconut oil, avocado, etc. After the thirty days, can you assess what you’d like to try and introduce back into your diet, and what you’re better off avoiding.

The changes in him were immediate, and not just in terms of weight loss. His congestion and joint pain decreased, and his energy levels increased. We’ve never been huge consumers of processed food (being gluten-free and then also dairy-free makes that hard, anyway) but watching him, I began to see how our choices could be even cleaner and healthier.

With celiac disease and other autoimmune conditions, I am all too familiar with how inflammation can wreak havoc in your life so I jumped on board and did my own Whole30 Challenge, and it’s been a great experience. I’ve lost weight, yes, but more than that, I’ve gained so much energy (I used to drink 6-7 cups of coffee daily, and now, even with the same lack of sleep, I drink one) and I am much more conscious of what foods make me feel good, and which ones simply aren’t worth it.

For example, I know I won’t be re-introducing dairy since I don’t miss it and am less congested without it. I don’t plan on re-introducing rice or corn, but I do think quinoa has an occasional place in the rotation. I’ve discovered nightshade vegetables like tomatoes and eggplant really bother me and aren’t worth it, and gluten makes my husband feel truly horrible.

Kale is our favorite new food, and we some days we have it with all three meals. Since we never bought sweets or desserts I thought I was doing pretty well avoiding sugar, but I now see the many small ways it crept into my diet, like the cane sugar in in my almond milk and in vegetarian soups I often had for lunch. We are both amazed at how much more we enjoy fresh fruit, and crave it in a way we never did. (Interestingly, I just came across this NYT article that makes the case for eating fruit.) Olive oil and a squeeze of fresh lemon taste better than any salad dressing, which usually have some sort of sweetener.

Honestly, the hardest part for me was getting used to drinking black coffee, and while I will try it out with completely unsweetened almond milk, I now know I can drink black coffee and be okay—it took me a long time to acquire that particular taste, admittedly, but I did it, and I feel so much better without adding chemicals or sugar to it. I am not a huge red meat eater (remember, I’ve been vegan for breakfast and lunch and eating mainly vegetarian for dinner), but I’ve been getting a lot of my protein from eggs and fish, and since it’s summer, we’re throwing so much on the grill.

It’s been a great exercise in thinking thoughtfully about choices and paying close attention to what makes our individual bodies run best, and we plan to keep with it.

Have you tried the Whole30 Challenge? What benefits did you notice? Are you doing some sort of modified Paleo diet? What recipes or resources are most helpful?

On Leafy Yards, Summer Play, and Lyme Disease

I am surrounded by ticks.

No, seriously. And I’m not just talking about all the recent media coverage of ticks and Lyme disease, like this New Yorker article on Lyme disease, or the fact that I devoted a chunk of my recent book to Lyme disease, the controversy surrounding the chronic Lyme diagnosis, and the role of social media in this polarization.

There are deer ticks everywhere in my lovely neighborhood sanctuary. I have pulled ticks off my husband’s legs, my daughter’s arms, and have had them crawling across the lens of my glasses. Most of the neighbors on my street have had Lyme disease at least once, and a town social media message board frequently has posts about people getting diagnosed with it, or advice on how to prevent it.

I am so hyper-aware of them that my two-year-old climbed up on my husband’s lap and tilted his head back.

“Daddy, let me check your neck. Ticks really like necks!” she told him. On the bright side, at least I know she is listening and absorbing, right?

We do thorough tick checks as soon as come in and every night. I try to wear long pants or light colors as often as we can, and when she’s wearing dark pants in the grass I tuck them into her socks. I scour her thick blond curls and scalp. We use organic methods of tick control in our yard.

Not everyone who gets bitten by a tick knows it, or gets the telltale bull’s-eye rash. Symptoms of Lyme disease can mimic many other conditions, and there is a lot of debate surrounding the accuracy of the basic Lyme blood test. It feels like it’s everywhere here in New England, yet feels so inscrutable, too.

I am fortunate that we have doctors who have extremely low thresholds for testing for Lyme, and live in a community where it is very much part of the public consciousness. But still, even with information, awareness, and prevention strategies, I feel a little besieged when I step out into our leafy, seemingly peaceful yard. Misdiagnosed and/or untreated Lyme, chronic Lyme, and Lyme’s co-infections are nasty business. I don’t want to run to the doctor every time we have unexplained symptoms like achiness, fatigue, or swelling, but I also don’t want to take chances.

I thought it was a great time to link to the Q&A on chronic Lyme and Lyme’s co-infections I did with my friend, fellow writer, and chronic Lyme patient Jennifer Crystal. It’s definitely worth a read, as is her more recent recap of news coverage over at her blog, Touched By Lyme.

Tell me, readers, do you live in an area with a lot of deer ticks? Is Lyme disease on your mind all the time in these summer months? Have any tips or tricks to share?