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!

On Why I Write

Sharon at Bed, Body & Beyond is hosting the next Patients For a Moment blog carnival and asks us to consider why we write.

I’ve posted about writing often here, and how the questions of
public lives versus private lives and storytelling
get more complicated the longer we write.

But since it is such a fundamental part of my life, as well as a fundamental part of my experience as a patient, it’s a question worth exploring further.

First, there’s the obvious. I write because as an author, editor, and an academic who teaches writing, it is my job.

I started writing this blog because I knew there must be other people like me out there, young adults living with chronic illness, and I wanted to find them. I’d always been the sick kid, the sick teenager, the sick twenty-something, and while I knew I might never meet someone with my rare set of diseases in real life, I knew wasn’t alone. And I knew that whether we’d been sick our whole lives or were recently diagnosed, whether our illnesses were life-threatening or life-altering, our individual symptom differences paled in comparison to the universals we struggled with: acceptance, denial, balance, guilt, etc.

I keep writing this blog because as my own journey has evolved from being a single graduate student to becoming a married person, an author, and a mother, I continue to learn and be inspired by those I find on similar paths, facing similar challenges. Careers, infertility, chronic illness, parenthood, patient-hood—the perspectives I encounter on all of this from readers and from other blogs are often invaluable.

I wrote Life Disrupted for similar reasons: I wanted to capture the experience of living with chronic illness as young adults. I am writing my second book because I started asking lots of questions about the evolution of chronic illness in American society that I didn’t know the answers to, and I realized I had to keep digging. (Still digging, but getting close to the end!)

But more simply, I write because it is what I have always done, for as long as I have memories. I write to process, I write to clarify, I write to learn.

As a sick child, I wrote because it was something I could do no matter how bad I felt or how many nights I was in the hospital. I wrote because I loved to read, and books kept me both distracted from illness and connected to something beyond myself. I wrote because I couldn’t always run or play, and I wrote because the voice I discovered in writing gave me an identity beyond that of the sick one. It gave me self-esteem and confidence when my body betrayed me over and over. I don’t know that I’d have gone to Georgetown, or interned at, or done a lot of the things being a teenage and college-aged writer allowed me to do had writing not already been such an integral part of my self-concept.

I have no doubt I’d still be a writer even I hadn’t spent my whole life as a patient. It’s the way I make sense of my world, it is my instinct at every turn. But I wouldn’t have needed writing the way I did so often through the years, and I don’t know that I would appreciate its ability to build community and connect people the way I do. Writing is an extricable part of my personal life, but I’m fortunate that having a career based on writing isn’t just good for my spirit. Writing allows me to have a successful professional life despite my health issues, and though I didn’t consciously set out on this path for those reasons all those years ago, I am grateful to be here.

On Students, Teachers, and Chronic Illness

My semester started recently. For weeks prior, while I fretted about not finalizing my syllabi and gulped copious amounts of late-night coffee to finish writing my book draft, Erin Breedlove’s post on the five things professors should know about students with disabilities rattled around in my brain. (As did this response to her post from the perspective of a professor who works with students with disabilities.)

Finally, with my new fall routine taking shape, a certain little person’s first birthday under our belts (!), and yes, lots of coffee, I have the mental space to piece together my own thoughts on the topic.

I have a somewhat unique perspective on students, teachers, and chronic illness. As a lifelong patient, my entire career as a student has taken place within the context of chronic and often serious illness. As a full-time faculty member with seven years of college instruction behind me, I’ve seen a lot from the other side of the desk, too. I wrote in detail about navigating college with chronic illness in Life Disrupted but here are some brief thoughts for students:

Communicate with your instructors. It is your choice as to how, when, and if you disclose illness and/or disability to your professors, but what I tell students who do fill me in is that I can only help them as much as I am informed. If I know there is a medical situation, or a hospitalization or other event, I can help formulate a plan that minimizes stress and allows students to focus on the most important thing first: their health. I am happy and willing to oblige, but it is much easier to do that if I am aware of at least the basics, rather than finding out after weeks and weeks of missed classes/work that a medical problem exists.

When I was an undergrad and grad student, I usually had a brief chat at the end of the first class where I succinctly described my situation in the context of how it might impact my attendance—for example, infections worsen quickly so I might end up in the hospital unexpectedly. I usually ended by saying while I hoped there would be no complications that semester if there were, I would communicate them as promptly as possible.

Document as much as you can if you know you will need accommodations. With documentation from disability services, medical/health professionals, etc (whatever the particular institution requires), instructors can do a lot to help students with illness succeed in the classroom. Without them, our hands are somewhat tied.

Be proactive.This has a lot of applications. When planning course loads, consider time of day. Some students struggle with early classes, while others know their fatigue or pain is much worse later in the day and earlier classes make more sense. If your conditions are worse in the winter, see if you can spread out classes over the summer session so the load is a little lighter during known trouble times.

If you can, try to be proactive when you feel a flare coming on, or experience a decline in health status and fall behind in work. Even a simple e-mail can do a lot to decrease the stress that goes along with being overwhelmed when you know you are falling behind. Though a bit of an extreme of an example, when I was in the ICU right before exam period in college, I was able to send some brief e-mails just to let my instructors know I was an inpatient and that I would be in touch to make up all missed work as soon as possible. I never experienced anything other than concern and cooperation from my instructors in situations like this.

Since I’ve had many students with physical and mental health conditions in my classes, I know most instructors do, too. I think the Chronic Illness Initiative at DePaul University (where I’ve had the good fortune to teach a course on chronic illness) is a wonderful because it helps serve as a liaison between students with illness and their instructors, but certainly most of us teach without this type of resource. For those in academia who want to help their students, here are some considerations:

Understand the challenging nature of chronic illness. Many of your students who have disclosed illness will not “look” sick and their conditions may flare and worsen unpredictably. The student who was raising her hand in Monday’s class could be incapacitated by Wednesday. We’re more familiar with visible physical disabilities and there are more clear-cut guidelines and accommodations for physical disabilities—chronic illness is a comparatively grayer space.

Be as flexible as you can while still maintaining the classroom’s integrity. If you know there is a verified medical situation, work with your students to prioritize deadlines and assignments so they can catch up without putting their health in jeopardy to do so. Of course you need to be fair to the rest of the class and need to ensure the student in question completes the work required to pass the course, but helping students focus on the most important assignments and being flexible with deadlines can do a lot to keep students from slipping too far.

Hold your students with illness accountable. This is a tough one, but so important. If you’ve worked out a viable plan to catch up on work that all parties have agreed to, then barring further complications or health crises, the student should come through with the work. I can say this without compunction because I’ve been on the other side, and I’ve made those agreements and taken those extensions and kept my word. Students with illness warrant accommodation and flexibility, but being accountable is a critical life skill for them, too.

And of course, above all, respect for both sides goes a long, long way.

Take a Deep Breath

The world is a decidedly less funny now. Yesterday, an incredibly wise, insightful, humorous, and courageous man succumbed to his lifelong struggle with cystic fibrosis. If you’ve read Life Disrupted, then you remember how sage Brian’s thoughts on life, love, and chronic illness were.

It was a privilege to know Brian and to share a part of his story. The past couple of years were particularly tough for him in terms of disease progression, and he made the decision to join the lung transplant list recently in light of that. In fact, he was called in for a possible lung match when things took a turn with an overwhelming infection. I cannot imagine the emotional roller coaster and devastation of that scenario, especially for the many, many people who loved Brian and supported him every step of the way and were hopeful for new lungs.

Today is a gorgeous sunny day, with low humidity and plenty of blue sky. It is the perfect day for all of us, especially those of us with respiratory problems, to take a deep breath. To inhale and exhale, and appreciate the simple gift that motion is.

It should never be as hard as it is for some.

I can’t think of a better time or a better reason to remind you about the life-saving gift that is organ donation, not just for people with cystic fibrosis or PCD, but for patients of all ages and diagnoses who are waiting—waiting for a cure, or waiting for a chance to extend their lives…simply waiting.

On Writing

It occurs to me that I haven’t written about writing in awhile.

Partly, this is because the whole writing-about-writing thing can be a bit too meta unless you’re sitting in a graduate writing workshop surrounded by people who do nothing but write, too.

But mostly, it’s because for awhile now I have been too busy with the writing I do for a living to do much else (except mothering, which comes first, of course). Case in point: it is almost 10 pm on a Friday night and I’m taking a quick break from The Book but expect another hour or two of work before it’s a night. It’s glamorous, the writing life, no?

(And with Le Plague circa May 2011 forging a vengeful comeback, it’s even more glamorous. But I digress…)

It’s been awhile since I’ve been wrapped up this intensely in one project, since I’ve had this much focus. It’s much harder fought than the last time around, or when I was in graduate school, when I wasn’t a full-time lecturer or mother to an infant, so each moment I do carve out for writing is that much more precious.

It’s been good for me to step beyond the role of writing instructor and really dig into the writing process myself in such an all-encompassing way. I’ve re-learned some important things:

1. Know when to walk away: Last summer, when I tried to get as much done as I could before my health imploded and my baby arrived, I was stuck in the “I must write X amount of words per day” rut. This might be good for discipline, but it’s terrible for creativity and for development of ideas. Sometimes, I am really “on” and I can write several thousand words in one chunk of time. Other days, it’s hard going to get more than a few paragraphs. When that happens, when I am forcing each sentence and not saying what I want to say, the best thing to do is step away—sometimes for an early lunch, sometimes for a short walk, sometimes for a few hours. See, ideas need to marinate a little bit, and I need time to figure out what I want to say about what I’ve just written. Usually, it’s when I am walking with the baby or driving the car or making dinner that I solve the problem or make the connection I couldn’t do earlier.

2. Remember the audience: For real, I teach a whole class on writing for different audiences (in the health sciences) and talk about audience so much during the semester I tire of hearing the word. But with a project as big as the one I am working on now, I need to drill that into my brain as much as my students need to hear it. Nowhere is audience more important than in terms of scope—I am doing a ton of research and I always need to stop and ask myself how much context and background I can reasonably expect my audience to have; in class, we call this audience analysis. This dictates how much detail and backstory I fill in, and it is a constant negotiation, probably one of the most difficult parts of writing for me. I have so much information, now how can I organize it? Figuring out what my readers need to know is a huge step.

3. Tell a good story: From novels and short stories to memoirs and serious nonfiction projects, each genre of writing needs to meet this very basic but oh-so-important criterion. The writer needs to engage the readers, to entertain them and make them want to keep reading. This does not change if the subject matter is serious and the research is intense—every writer still needs to make it a good story. I know when I am getting glassy-eyed with what I am writing that it is time to switch gears (or walk away). You can be informative and still be interesting. It is not always an easy thing to balance, but if you’re genuinely interested in the subject matter, that will come through. I always tell my students to think carefully before committing to a research topic—if after a few weeks, they are bored with it and bored with writing it, I will be able to tell that from reading it.

This is an incomplete list, for sure, but it’s a start. Writers and bloggers out there, what can you add?

IRL: The Rare Disease Edition

So, last weekend I met and had brunch with a fellow PCD patient. (Hello, L, if you are reading this!)

That sentence is actually pretty monumental. You see, it is the first time I have ever met someone with PCD (and bronchiectasis) in person. And, for all I know, it could be the last.

(There was that one time a young PCDer happened upon a book reading I was doing for Life Disrupted totally by coincidence, but we were both a little under the weather and therefore could not come in contact with each other, so I saw him from afar but did not meet him.)

It is a reality of life with rare diseases that we can go years, decades, even lifetimes, without meeting other patients in person. When I was first correctly diagnosed, I can’t tell you how helpful it was to know other people like me existed, and to read their stories and advice online. The impact of the Internet on the patient experience in general and the rare disease patient in particular is so important and so layered I plan to tackle it on its own and in other venues.

As you know, I am staunch believer that our experiences as patients with chronic illness unite us more than our different symptoms and diagnoses, and I will always believe that. At the end of the day, dealing with acceptance, control, relationships, balance, work, families, etc are universal challenges.

However, there is something so different about seeing someone in person. To drink coffee and swap stories with someone whose experience so closely mirrors your own. (In our cases, collapsed lungs and pneumonia at birth; frequent and serious infections throughout childhood and on; multiple surgeries; multiple hospitalizations; incorrect labels and diagnoses; secondary conditions like bronchiectasis and infertility; etc, etc.)

Oh, and we could cough and it was no big deal, and no asked if we needed water or were sick because everyone at the table knew that cough was as natural to us as the inhaling and exhaling everyone else does that we can never take for granted.

I don’t want to say it was validating, because I have my correct diagnoses and treatments now and am past needing validation. I think comforting is the right word, because despite technology and blogs and social media and online forums and everything else, being a patient with a disease nobody recognizes and nobody around you has can be isolating.

How many of you have felt that way?

(And I’m not talking about the health care delivery implications of people not recognizing it; I’m speaking strictly of the social and emotional aspects of living with these conditions.)

A sense of community is harder to come by when it comes to rare diseases. There are no disease awareness months, trendy wristbands, walk-a-thons, etc. Thankfully we have the umbrella National Organization for Rare Disorders, and numerous disease-specific work tirelessly to advocate and research for new medications and treatments.

But day to day, in the shuffle of work and doctor appointments and daily chest PT, in the managing of all the other conditions that take second seat to how well can I breathe today, it does feel a bit lonely.

I’ve been thinking about community a lot these days, especially since my post on audience: the power of communities to abandon differences and unite to effect change (the disability right’s movement, for example); the power of disease-specific communities to achieve tangible results (the early HIV/AIDS movement, for example); the power social media has to create and sustain communities and disseminate knowledge (for the better and the worse.) Looking at current events in the world right now, clearly this discussion is not limited to patient communities.

Though I’ve struggled with assimilating my writing and blogging with the new communities I find myself (parenthood, working mother, mother of a patient, etc) I am getting there. And while I have a lot more to write about the points I mentioned above, on a personal level, I am trying harder to connect to the communities I dohave.

An avid reader, I’ve been terrible about commenting on blogs the past few months, and can do a lot more here, too. I’ve also updated a sorely out of date patient/medical blog roll, and added a whole new category of parenting, infertility, and adoption blogs that I read. For either category, shoot me an e-mail if I’ve missed you and shouldn’t have!

Virtual Book Tour: Chocolate & Vicodin

I am pleased to participate in the virtual book tour for Jennette Fulda’s new book, Chocolate & Vicodin. It is a humorous and insightful look into living with chronic pain and the popular blogger and author’s journey to reclaim her identity as more than a patient with invisible illness. Jennette and I did a Q&A, which I hope you’ll enjoy. Be sure to check out the book’s site and watch her trailer, too!

1. I wrote Life Disrupted because I didn’t feel there were enough resources out there specifically for young adults with chronic illness. What prompted you to write Chocolate and Vicodin? What did you hope to add to the literature on pain and illness?

Initially, my motivations were fairly selfish. I had decided to write the book regardless of whether it sold or not because writing has always helped me understand my life in a way I never can before I’ve started typing on my laptop. Writing about my headache helped me find meaning in an otherwise meaningless experience of endless, pointless pain.

Once I’d finished the book, I realized the narrative arc followed me from the initial appearance of my illness, through denial, anger, depression, binge eating, illicit drug use, yelling at my blog readers and finally to acceptance that my life had changed. Ultimately it’s about learning to move on with my new life instead of waiting for my old life to reappear. I hope readers with chronic illness gain a measure of strength and hope from that, and readers who aren’t sick can understand what people who are chronically ill go through emotionally.

I also hope the story is funny and compelling enough to attract readers who don’t deal with chronic illness and thus increase awareness of invisible diseases. I purposely didn’t try to cram it full of facts and information about headaches and chronic pain, and focused more on the human experience. I think that’s something anyone can relate to if they’ve faced an unwanted challenge in life.

2. Like your memoir, Half-Assed, Chocolate and Vicodin deals with serious issues yet is seriously funny. How important is humor in terms of living with chronic pain or illness? How long did it take you to get to the point where you could view this journey with some humor?

A sense of humor is a great asset for life in general, not to mention when dealing with illness. I think life is 10% what happens to us and 90% how we choose to respond to that. If you’ve got a negative attitude, nothing will ever be good enough to make you happy. If you keep a positive outlook and remember how to laugh at yourself, you’ll be much happier even if things are crappy. I’ve always viewed life with a sense of humor. It seems to be my default setting. I think I was just raised that way. Blame my parents.

3. One of the hardest part of living with pain and/or illness is the isolation it can cause. What advice can you give readers in terms of moving beyond that (perhaps inevitable) stage?

We’re lucky that there are lots of resources and communities available online. Even if you have a rare or unusual illness, like a headache that doesn’t go away, there are other people in the world who have it, too, along with an Internet connection. I’ve gotten lots of emails from other headache sufferers because I’ve blogged about my illness. We’re able to commiserate, compare treatments, and laugh at the weird advice some people give us. If you reach out, it’s likely that someone else will reach back. So, keep reaching out, even if your arm is really, really tired.

4. I know you tried a lot of doctors and a lot of different treatments before you finally experienced some relief. What do you think finally made a difference for you?

I wish there was one magical, miracle cure I could refer to because it would make my answer much shorter. In reality, it’s a combination of many things. After 18 months, my neurologist and I have finally found a mix of medications that’s keeping my headache down to a 1 out of 5 on the pain scale most days. I also stopped drinking two cups of coffee in the mornings, and I limit my caffeine intake in general. I started using real sugar instead of artificial sweeteners, which I found to be scary since I’d already gained so much weight. Surprisingly, it hasn’t caused me to gain any more pounds. I also try to keep a regular sleep schedule because waking up even one hour earlier will give me an awful headache for the rest of the day. It’s my most reliable trigger, but at least I have a medically valid reason to sleep in.

5. Patients with chronic pain often face skepticism or dismissal from doctors who either can’t diagnose or can’t effectively treat/manage their pain. How much of a role do you think gender plays in this? Was it a factor in your journey, do you think? And lastly, what insights do you have for patients still looking for that right fit with a doctor or a diagnosis?

Fortunately, my pain was never met with skepticism. However, I did sometimes feel neglected by my medical professionals and left without guidance. I saw one neurologist to evaluate a venous angioma on my MRI films, and after he told me I was fine he didn’t recommend what I should do or who I should see next. It was like his part in the drama of my life was over and he was off to cash his check at central casting. I had another neurologist who recommended Botox treatment for me and submitted paperwork for approval from my insurance company, and then I never heard back from him again. I’m not sure if he even noticed I never came back.

I have a friend who’s in medical school, so I know that doctors have crazy schedules. They also have to see a certain amount of patients a day or bill a certain amount of treatments a month to stay in business. I think they’re overworked and it makes it difficult to give every patient the high level of care they deserve. That’s not an excuse, just an explanation.

Before my headache, I tended to view doctors as God’s representatives here on earth, wise and infallible. These days I see them as people with good intentions, but still just people. I used to give them all the power in the patient/doctor relationship, but now I see us as equals working on the same problem together as partners. If I don’t like what they’re recommending or feel they’re not listening, I know I can speak up or go elsewhere. The easiest way to give up power is to think you don’t have any. You do have power. Use it.

Thanks, Jennette! Next stop on the tour is This Mama Cooks, so click on over tomorrow for more good conversation.

And speaking of books, don’t forget there is one more day to leave a comment here about a positive food allergy/love story and be eligible to win a copy of Allergic Girl.

What’s Guilt Got To Do With It?


How appropriate I am thinking about the prompt for the next edition of Patients for a Moment tonight, the night before my full-time academic schedule begins. (I’ve been part-time for weeks but that doesn’t make tomorrow feel any less significant.)

But that’s a whole different working mother post.

Guilt is one of the predominant emotions that accompany chronic illness. Certainly it waxes and wanes but it is inescapable. In my experience, it’s the ways in which illness impacts those around me that is the cause of much of my guilt, and from the patients I spoke to when I wrote Life Disrupted and the conversations we’ve had on this blog, I think that’s pretty universal.

There’s the guilt I feel when I have to cancel on friends yet again, or cannot be there for them when I’d like to, or need to rely on them for more help than I’d like. There’s the guilt during periods of particularly serious illness when it feels like things are so one-sided, and I am taking a lot and do not have a lot left to give.

I’ve written a lot about the guilt involved in marriages with chronic illness, and the toll invisible illnesses take on those who live with us and care for us. I am so grateful for all the ways in which my husbands supports me (physically, emotionally, etc) and all the compromises and accommodations he has made over the years because of my illnesses, but of course I wish he did not have to do those things.

When I was pregnant, I wrote about the anxiety that comes with a high-risk pregnancy, and the preemptive guilt I felt when I worried that something going on with my body would somehow harm my baby. Every non-stress test, every biophysical profile, every appointment and blood test and hospitalization was tinged with that, and literally not a day goes by where I am not grateful that she is here, and she is safe and happy.

But now that she is here and growing more alert and aware by the day, there is yet another permutation of guilt, because I am starting to see the ways in which my illness affects her. So far, the impact is minor, but I hate it when, for example, I am having my daily chest physiotherapy and she is in her bouncy chair next to me and needs me and I cannot give her what she wants. She doesn’t understand why, and I hope she is not confused as to why I leave her there. This is just one small example, and I know intellectually she is fine, but in the moment I hate it so much.

I am sure the older she gets the greater the stakes will be, and the things I might have to miss or might not be able to do are things she will notice even more. But I can’t worry about that now; that is not productive for me and it doesn’t do her any good. All I can do is give her my best on my good days and especially on the more difficult ones.

The closer we are to people and the more they mean to us, the more they shoulder when it comes to illness; the more our bodies’ idiosyncrasies and problems become theirs. It is so easy to let guilt over illness consume us or overly define relationships and attitudes, but my health issues are but one part of me. Therefore, they are only a piece of the relationship I have with my daughter, with my husband, with my friends and family. If I remember that and keep things in perspective then that’s all the better for her.

(It only were it as easy as that, huh?)

So I Dumped My Daughter’s Doctor

Ah, the doctor-patient relationship.

I explored it a lot in Life Disrupted, but it is frequent fodder for this blog, too: seeing doctors as our advocates, knowing the importance of speaking up, and realizing I can just say no, for example. I’ve compared finding the right doctor to dating, and will tell anyone who cares enough to listen how wonderful my lung doctor is.

All of this is to say, by now I know what to look for, and I know what I will and will not tolerate. And then I had a baby, and I became the mother of a patient, and became her voice when it comes to health problems and doctor appointments.

Before she arrived, I did my due diligence. I researched pediatricians, ran some interview questions by my best friend, who is a pediatric nurse practitioner. I liked this pediatrician’s experience, and when I met with him before my daughter’s birth, I liked his approach. Our talk went well, and I left feeling reassured she would be in good hands.

Since she had jaundice and had trouble feeding because of it, we saw him a lot her first couple of weeks. I appreciate his close monitoring of her bilirubin levels and getting us to a lactation consultant, but even in those first early days we began to see signs Things Weren’t Quite Right with this relationship. And as her first days turned into first few weeks and more health problems emerged for my little girl, the evidence mounted:

No appointment, from a jaundice check to her 2-month check up (shots included), lasted more than five minutes. Five minutes. I am not exaggerating. Just enough time to weigh her, give a cursory listen to her lungs, and answer the one question I managed to spit out in time with “yes” or “no.”

I would mention discomfiting symptoms to him and he would brush them aside (real, legitimate symptoms—I won’t get too specific here to respect my daughter’s privacy, but trust me, legit) or, dash off a prescription.

When I would call to discuss her lack of improvement and ask for advice, we didn’t get anywhere. No investigation into what else could be causing the problems, no wanting to examine her when her symptoms got even worse, nothing.

Never once did he engage with my daughter aside from the perfunctory weight check; never once did he ask me how she was doing (or sleeping, or eating, or interacting, etc). Never once did he ask me how I was doing as a first-time parent, or if I had any concerns, etc. Developmental milestones? What, are those something you’re supposed to discuss with your doctor, ever?

Lastly, he said family medical history wouldn’t matter for a long time and would not discuss it, (like, walked away when my husband tried to discuss it). Um, hello? My family’s medical history is as complicated and lengthy as my own, and given some of her symptoms, very relevant.

One day, as I was about to call his office because she had gotten much worse, I stopped mid-dial. I was sick of hitting the same brick wall, and fighting to get him to pay attention to my daughter’s symptoms. She deserved a lot more than that.

I’d wanted this to work out because I’d invested time and energy into selecting him, had really liked him during our interview, and I kept hoping the doctor I thought he was would show up. I gave him the benefit of the doubt at first because I was the new parent and he was the seasoned doctor, but I know my kid. And I know when Things Aren’t Quite Right with her.

She is the most precious thing in the world to me, and I entrusted him to do right by her. Enough.

So that same day, I called a different practice. They worked us in that afternoon. In fact, their words were, “An infant with XXX? Bring her in right away!” With those words, I officially dumped her former pediatrician.

Her new practice took down her medical history, her family’s history, spent a long time discussing various possibilities and plans of actions with me, and got her in for necessary testing the very next day. From day one they were proactive in getting her the help she needed, and have been wonderful about answering my questions, following up on her specialist consults, etc. Together, we’re getting to the bottom of a few different issues.

I have been angry with doctors many times before, but never as angry as I was with her former pediatrician when her new team figured out some of what’s wrong with her, things he would have and should have found if he’d cared enough to listen and act…you know, do his job.

Rest assured she is a thriving, happy, smiley little baby but we are very, very lucky we did not have a much bigger crisis on our hands due to his apathy.

I am so grateful she has such amazing doctors working with us now, and that’s what is important. But I forgot how crummy it feels to be so disappointed in a doctor.

I have long said that communication is central to a good working relationship. Since I’m her advocate in the exam room, if I don’t feel I can speak with my daughter’s doctor about her health, then that is obviously not a tenable situation. I don’t need my hand held, I don’t need excessively long conversations, and I don’t call unless there is something significant going on, but I do need someone who listens, who asks appropriate questions, and who cares enough to look for answers.

Illness Essentials

In the spirit of getting back into a blogging groove, I decided to answer the Queen of Optimism’s prompt for the next Patient for a Moment carnival.

With the holidays and gifts on my mind, (and various illnesses and symptoms in my thoughts a lot lately, too) it is also a good time to consider the various “must-haves” and necessities for life with chronic illness. We’re supposed to look at concrete items, not more abstract concepts like love, support, empathy, etc—though of course everyone could use those, too, healthy or not.

If you’ve read Life Disrupted then you know I have a whole section of surviving hospitalizations and you won’t be surprised at my number-one must have:

My laptop.

I very rarely leave home without it. Okay, on maternity leave I stuck with just the diaper bag, but typically I have my laptop with me wherever I go. I’ve had it with me as a patient in the ICU, I bring it to every doctor appointment, and yes, I did bring it to the hospital for what we fondly call The Longest Labor Ever. (Okay not really but seriously, it was pretty close.) It is always the first item I pack in my hospital bag, before the medications, the toothbrush, or the contact lens case.

Being sick involves so much waiting around, and with free wifi in most hospitals and doctor’s offices these days, I always want it with me in case I can catch a few minutes’ work.

As a writer, editor, and professor, my computer is where my life’s work largely happens. But beyond work, whether I am home sick or in the hospital, my computer is my connection to my IRL friends, social networks, and the outside world in general. It brings the world to me when I cannot participate in daily life. My current Mac is four years old and makes an incredibly sad noise when I open it due to a broken CD drive, plus the letters have worn off some of a lot of keys, but I am still smitten with it.

My iPhone is another must-have. I didn’t realize how useful it would be until I had one and now I cannot imagine not having it. When I am on oxygen or too sick to speak, I text words and photographs like a fiend. When I needed to update concerned friends and family each time I was in the hospital during the pregnancy, my iPhone was essential. Sometimes there are too many wires and monitors and it is much easier to whip out my tiny phone than it is to use the computer (especially when very pregnant!) I would update my husband, catch up on e-mail, and use the Internet during my non-stress tests, and even used the iPhone’s Voice Memo function to record the sound of her heart beating to share with our parents. There are also a ton of health-centered apps and tracking functions for the iPhone.

I am spatially challenged and horrible with driving directions and the map/directions function is huge for me. In fact, I will be using it today to get to my daughter’s appointment with a specialist at (literally) the only hospital in Boston I have yet to enter.

And on bed rest? Well, my phone and my laptop were a 10-week lifeline.

Other necessities? A BPA-free water bottle to track how much I drink. Fluids are important for breast feeding and also help loosen/thin out mucus, so it’s great to carry the bottle with me wherever I go to stay on top of that.

A smaller, more portable nebulizer that can even fit in my diaper bag if I needed it to, and back up inhalers so I have some for home, for my briefcase, etc.

A gym membership or exercise in general; exercise isn’t just good for the body as a whole (especially after a baby!) but is actually medically necessary for my lungs—if I keep things moving around in there, infections don’t get a chance to linger as much. If I time it so I exercise right before my daily chest physiotherapy, I can really maximize how much gunk I can cough up.

The obvious? My blue health insurance card. The numerous daily medications, the daily physical therapy, the medical equipment, the coverage for my specialists, the lactation support for my daughter, the coverage for my many hospitalizations and tests—this little card makes so much of that possible. I work extremely hard for my health insurance and have made a lot of sacrifices to get it, and know I am lucky to have comprehensive coverage. I cannot imagine life with chronic illness without it, and realize not everyone is as fortunate.

There are many more, but I am actually off to a doctor’s appointment right now.