Category Archives: Chronic Illness

Making Order Out of Chaos

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When I read Duncan Cross’s prompt for the latest edition of the Patients For A Moments blog carnival, which asks how we recharge, I was sitting in my home office. Stacks of bills and paperwork that needed to be filed took up most of the desk space. An assortment of mail, cards, and other mementos took up residence on top of the filing cabinet, patiently waiting to be stored more permanently. Folders filled with journal articles and research piled up in leaning towers on the floor, competing with books I need to read and review, files to read through for my teaching and research projects, and various stickers and drawings from my trusty little assistant.

In short, my home office reflected the state of my life the past several months—exciting and productive but incredibly intense and long, too. (Teaching an overload (4 courses), managing the pre-launch book tour and subsequent book tour, doing in-person book events and interviews, freelancing, helping out with care before and after my father’s transplant, etc.)

Having all these very big things happen all at once equals a lot of emotion, a lot of responsibilities, and very little sleep. My husband works weekends, too, and with some juggling the two of us we kept up with the basics: laundry, weekly cleaning (dusting/vacuuming/scrubbing), cooking, etc.

But the long-term stuff? The filing, the organizing of pantry and shelves, the sorting through drawers, the de-cluttering and boxing up of old toys and games? All that stuff slipped to the wayside. We were just trying to keep up with the everyday stuff; filing paperwork was just not a priority.

This all goes back to the central question Duncan Cross asks—what do we do to recharge when we are run down? After reading it, I ignored the looming deadlines, closed down my laptop, and spent some time organizing my office. The desktop was pristine. Each scrap of paper had its rightful folder. Each stack of folders had its rightful drawer. I felt a little less burnt out and frazzled.

For a moment, I debated sitting back down and tackling the deadlines, but something in me just couldn’t. I’d done that at the expense of so much for so long.

So then came clearing out all our drawers and closets, then the intense dusting behind and underneath the furniture, and I felt even less burnt out and frazzled. Then came the whole downstairs, too. A couple hours later, I flopped down on the couch, wheezy and exhausted, but it was the first time in so long I felt settled. Even though I was incredibly sleep deprived and getting over a sinus infection, I felt so energized.

While the examples are not always so extreme and time-consuming, I realized after the fact that putting my life into order in the midst of chaos is something that always makes me feel a little better. Even something as small as writing out a To Do list has the power to both calm and recharge me when I am a hospital patient and I am physically unable to make order out of the chaos.

After a 14-hour stint at the hospital the day of my father’s transplant, my husband made sure the house was clean and organized before I got home, because he knew it would make me feel better to have things orderly when I was in such an emotional state.

My office is now a sunny, neat place to get work done, instead of a omnipresent reminder of how frenzied the past few months have been, and putting more order back into the household makes me feel like I have more control over my life in general.

How do you recharge? What do you do when life and stress and illness start to spiral?

Navigating Work-Life Balance by Asking for What You Need (Part 2)

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In this final installment of a week-long series on chronic illness and employment, we pick up where we left off: frustrated by her circumstances and her chronic conditions, Leah Roman had a huge choice to make. Just how much was she willing to sacrifice her health? If she asked for what she truly needed, what would that look like? Follow the rest of her story, in her own words. We’d love to hear your thoughts on her big decision.
 

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From August to October 2012, I dealt with a particularly bad flare-up.  As it had in the past, my flare incited my chronic hip bursitis.  The bursitis made it almost impossible to get up and down the stairs- a feat required of the two-train commute into my Philadelphia office.  There are 48 stairs just to reach the train platform in my suburban town.  After trying various strategies to accommodate the commute (e.g., traveling with my husband so he could carry all my stuff; using the SEPTA elevators-which are often hard to find and/or out of service), I always seemed to get the same result:

I always collapsed on the couch exhausted at 6:30pm.  I was too tired to make dinner.  I was too tired to exercise.  I was too tired to make social plans.  I avoided plans on weeknights because I was too exhausted from that day’s work.  I avoided plans on weekends because I needed that time to recover from one exhausting week before another exhausting week started on Monday.

After much soul searching, I decided to take the advice of a mentor who helped me adjust to a life with chronic illness.  She said, “Ask for what you need”.  So I did.

I needed a flexible schedule.  I needed a commute that was physically do-able, even on the worst day.  I needed to reduce my stress level.  I needed to feel more independent and get through my day without so much help.  I needed to get over my fear of working from home.

My biggest fear was that working from home would be isolating. Having a chronic illness is isolating enough and I often thought that going into the office (even with its challenges) got me moving and socializing when my instinct may have been to hide at home under the covers. I was also lucky enough to have my best friend in Philly work just across the aisle in our workspace. I got through many difficult days because we made time to have lunch together and she has consistently been one of my biggest cheerleaders. I was worried about the isolation of working at home without our lunch dates.

Even with these fears and uncertainty, I left my full-time position and started my own public health consulting business in January 2013.  I immediately felt relaxed.  With chronic illness, so much is out of our control. Now I could decide when to work and how much to work. I particularly enjoy the opportunity to control the message about my health and my recent work change.  No- I am not “too sick” to work.  Instead, I made a conscious decision to design an employment situation for myself that was balanced, enjoyable, profitable, and sustainable- flare or no flare.

Prior to January, I would drag myself out of bed at 6:30am- often with a poor night’s sleep due to one nagging pain or another.  My husband and I joked that he duct taped me together (i.e., collected my work bag, packed my lunch, found my keys) and shoved me out the door in time to catch the train.  By the time I arrived at my desk, I was exhausted!

In contrast, I am now well rested.  I sleep until I naturally wake up.  My morning starts very calmly with breakfast and conversation with my husband.  I’ve noticed that this calm morning carries into the workday.  I no longer feel pressured to work early “regular hours” like everyone else.  I work when my body is naturally energized (usually 10:00am-6:30pm).

I also use my flexible schedule to integrate exercise or errands into the day when I have more energy.  I initially worried that work from home would be too sedentary.  After all, I was used to a city commute.  So I wear a pedometer every day.  If I have not walked enough, I explore the neighborhood or utilize the wonderful indoor track in our town.  I also took this opportunity to sign up for joint-friendly aquatic classes offered at our YMCA.  The majority of these classes are offered during the “regular” 9-5 workday, so they were previously inaccessible.  As I slid into the pool on my first day and immediately felt comforted by the cool water, the instructor recognized the peaceful look on my face.  “The water,” she said.  “It is like medicine.”

These aqua classes have been a game changer for me.  First, they have been a wonderful way to exercise.  I feel no pain when I am in the water.  Second, they are a great way to socialize- which helps address my fear of isolation now that I’m working from home.  With my aqua classmates, I’ve certainly found my place among fellow exercise misfits.  We have a mix of older and younger swimmers.  Almost everyone has limited ability to exercise “on land” due to obesity or injury or chronic disease or age or arthritis.  I love this group of people.

Back home in my office, I relish in my privacy…especially if I have a bad day.  I can sit in my office chair or on the couch and pack my hips or hands in ice without drawing any attention to myself. I do not need to explain myself anymore.

Putting together this post, I realize that I am incredibly lucky.  I am lucky to be on my husband’s (very good) health insurance so that I can be more flexible with my employment options.  I am lucky to work in public health, which is an industry that lends itself very well to contract and consulting work.  My business has been busy since the moment I started in January.  I am lucky to have incredible friends, family, and colleagues that have helped me get my company off the ground.

And finally (in some ways), I’m lucky for this illness. I know so many people that work their whole lives before realizing that they had no work-life balance, were burned out, and missed out on an opportunity for a better life.  Having a chronic illness forces you to consider these questions early.  It forces you to put yourself first and it teaches you to be creative in finding solutions for change.

 

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Visit Roman Public Health Consulting, LLC, and make sure you check out Leah’s blog, Pop Health. Thanks so much for sharing your story with us, Leah!

The Flexitarian (or, Nutrition and Chronic Illness, Part 1)

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In the wake of the book’s release, I’ve talked a lot about gender and pain. In a social history of chronic illness, gender and pain is indeed important to the storyline, but it is just one of many themes.

One question I’ve gotten is, what about the role of nutrition and lifestyle?

The short answer is that you simply can’t talk about how changes in the way we work, live, and spend our time—a recurring theme of industrialization and innovation—without looking at the influence of nutrition and diet. Some of the most common and costly chronic diseases, like cardiovascular disease and type 2 diabetes, are so closely linked to lifestyle. In many ways, this can be empowering, because it means there are concrete things we can do to prevent or mitigate conditions that don’t involve medication and intervention.

The longer, more complex answer is that of course, it isn’t always as simple and easy as that. Health literacy, socioeconomics, and many other factors go into it. (There is a much more eloquent discussion of all of this in the book, thanks to some insightful interviewees.)

People are incredibly passionate about nutrition and diet, whether it’s Atkins or Paleo or WFPB (whole foods, plant-based). I have celiac disease, so I know firsthand the power what we eat has in terms of improving our health. I’ve also routinely gone dairy-free; I am not lactose intolerant but cutting out dairy helps reduce mucus production. I know that eliminating certain foods can be incredibly liberating, and that even if you don’t have an allergy or food intolerance, choosing to eat a particular way can absolutely make you feel better.

To that end, I’ve been loosely following Mark Bittman’s “vegan until 6pm” mantra for a few years now, and over the past several months, I’ve slowly been adding in more vegetarian family dinners: butternut squash chili, peppers stuffed with quinoa and vegetables, garlic, cumin, and chili pepper roasted chickpeas (a toddler favorite—she has an eclectic palate), etc.

I don’t envision a point where all my protein sources will be plant-based, for pragmatic reasons. For example, my daughter loves salmon and we usually share a serving, so I wouldn’t want to cut that out, and I don’t always have the time to make separate meals. Sometimes, after a day of working, running around with a toddler, chest PT, then working all night again, it’s just easier to eat some (healthfully prepared) chicken, you know?

But still, I am definitely increasing my plant-based proteins and while I don’t eat a lot of processed foods (remember, I have celiac, and I don’t buy into packaged foods that are originally made with gluten and then are reformulated with GF ingredients), I am more conscious of selecting whole foods.

You can imagine my pleasure this week, when I stumbled upon Mark Bittman’s new column, The Flexitarian, and his measured approach towards a diet high in plant-based protein. While I am sure there are critics of the name itself, the philosophy here resonates since it’s what I’ve been gradually working towards on my own.

Interestingly enough, I read the column the same week I had the chance to interview Dr. T. Colin Campbell, author of The China Study and the forthcoming Whole. If you’ve heard of his work, then you know Dr. Campbell’s research suggests many chronic diseases can be either prevented or reversed through eating a whole food, plant-based diet. Keep an eye out for interview material and my thoughts on Whole–so far, it is engrossing.

I recently read an extreme comment on an article that said something to the effect of, nutrition is at the heart of everything and there is simply no reason for anyone to live with chronic illness. My gut response to that was, well, what about people with genetic or autoimmune disease? Would a change in nutrition suddenly grow working cilia for me? Or, isn’t it problematic to place the “blame” for lupus or multiple sclerosis solely on nutrition?

So as a preview of this discussion, I think you can acknowledge the enormous impact of diet on costly and preventable chronic disease without putting unattainable expectations on whole populations of patients. I also think that no matter what conditions you have or what causes them, the better you eat, the better you will feel, and I also think that conscious nutrition choices can do a lot to improve symptoms of existing disease.

What’s your gut reaction? More soon!

Battle for Grace

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It’s already a big spring for books about illness. I’ve written about The Last Best Cure and In Sickness As in Health, and now I’d like to introduce you to Cynthia Toussaint.

In the course of writing about gender and pain for In the Kingdom of the Sick, I interviewed Cynthia Toussaint several times. A former dancer whose life was turned upside down when a ballet injury turned into a serious, debilitating pain condition, Toussaint is the founder of For Grace, a nonprofit for women in pain. Her experiences having her pain dismissed and her suffering ignored, as well as her incredible story of unconditional love, make for a compelling read in Battle for Grace, her new memoir. In fact, Battle for Grace launched on Maria Shriver’s Architects of Change site.

Here is some more official information about Cynthia, as well as Battle for Grace:

“Cynthia Toussaint is the founder and spokesperson of For Grace (www.forgrace.org), an organization that fights to ensure the ethical and equal treatment of all women in pain. She has fostered two California Senate hearings on thunder-treatment of and gender bias toward women in pain and gave testimony at both events. Toussaint has appeared on more than 75 local and national television shows and featured in over 200 news stories, including ABC World News with Diane Sawyer, PBS, Discovery Health, The Learning Channel plus the New York Times and Newsweek, among many others. A recent media highlight was an invitation from Maria Shriver to launch Battle for Grace on her Architects of Change website. Toussaint lives in Los Angeles, CA, with her beloved John…

Toussaint takes readers on an extraordinary 30-year journey where a crippling mystery illness triggered uncontrolled violence that almost destroyed her. The story begins with a minor ballet injury at age 21 that grew into the chronic pain disease, Complex Regional Pain Syndrome. Her pain went undiagnosed for 13 years as doctors told her it was all in her head. Bedridden for a decade, she was unable to speak for five of those years and was often reduced to the violence that attacked both herself and John Garrett, the love of her life. John has remained at her side for 33 years. She lost the career she’d dreamed of as an actor, dancer, singer, the chance to have a child and very nearly John as well…But Cynthia somehow stuck with it, refusing to be a victim. In her battle to survive, she’s taken on the role of activist and aggressively challenges HMOs and pharmaceutical companies that put the unholy dollar ahead of patient care…”

I am grateful for Cynthia’s insights in my own book, and pleased to share the details of her new memoir.

Spring Preview: In the Kingdom of the Sick Pub Date, Book Events, and More

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in-the-kingdomAs you know, I wrote another book.

You might not know that its release date is right around the corner: APRIL 9, 2013.

I am pretty excited to share this with you.

In the Kingdom of the Sick: A Social History of Chronic Illness In America is available on pre-order now, and you can read more about in this starred review from Booklist.

If you’re local to the Boston area, I want to share two key author events. I would love to see you there!

1. On April 11, I will be doing a Meet the Author discussion and book signing at Northeastern University at noon. (I teach at Northeastern, so this is especially cool for me.)

2. On April 17, I will doing a reading at Brookline Booksmith at 7pm. This is one of my favorite bookstores around, and I can’t wait.

I am also really excited to announce that from late March throughout April, I am doing a virtual book tour with interviews, reviews, giveaways, and other events on different sites across the Internet, so no matter where you are, you can still be involved. I have some seriously amazing, insightful, and gracious people involved in this, and I will link to all of it from this blog.

I will also be posting events, reviews, and other press on my new Facebook page and on Twitter, so you can follow me there, too. The book explores patient rights, gender and pain, social media and patient advocacy, as well as the influence of science, technology, and culture on the experience of chronic illness (and more), and after all this time, I can’t wait to see it out in print and in readers’ hands.

Stay tuned!

Living the Dream (Or, It Takes a Village)

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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.

On 2013 (Or, Side by Side)

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It was helpful to re-read my New Year’s post and its emphasis on being more present as I thought about how to approach this first post of 2013. Being present, being mindful, really, involves focusing on the actions and emotions of the moment.

Grief. Joy. Sadness. Happiness. Side by side.

A couple of years ago, once we were through initial trauma of my mother’s brain injury and could focus a bit more on issues of rehabilitation, the losses stretched out in ripples, and the fear and sadness also mixed with gratitude and anger. After so many years of struggle we were finally expecting a baby, and here I was, in my third trimester, on bed rest and fighting to keep that baby safe. I wanted my mother. I wanted my daughter to know her grandmother. I wanted her birth to be free from all this heartache and upheaval, not just for me or for her, but for all of us. I was angry that we wouldn’t be able to just have the joy.

But I didn’t realize then the heart and mind’s capacity for preservation and compartmentalization. I didn’t know that I could weep for mother’s situation and yet hold my daughter in my arms and feel pure, all-encompassing joy. That even when it felt like things were crashing down around us—mother in rehab, father in the hospital, maternity leave that ended early, sickness for baby, sickness for me, plus all the normal newborn, breastfeeding, sleep deprivation woes—I could feel so utterly content, that even as my hold on all the other moving parts of my life slipped through my fingers, I never felt more solid, stable, or sure.

Over the past two years, I’ve often thought about this dichotomy: How I’ve never been happier than I am when I am with my daughter, how this always-cheerful, adaptable, chatty, precocious little girl has changed us, changed everything. How I gain so much every day I get to be her mother, even as more and more slips away. How I’ve re-calibrated to an ever-shifting sense of normal, where I watch people I love suffer, where we all shed more tears than we used to. Guilt lingered—did the many tears I’ve shed somehow take away from my gratitude for her? Did the joy and the love somehow mean I didn’t appreciate the gravity of all the stresses around us? Could I feel both so completely and simultaneously and have each one be true, be real?

Yes. If there is anything I have absorbed from the past few years, it’s that.

I remember so clearly the day this fall we found out my father’s lone remaining kidney was indeed failing. I called my husband but couldn’t get all the words out to tell him, there simply wasn’t enough air. Heart-ache, I repeated the word in my head as I battled my way down busy Huntington Ave, the traffic lights blurry through hot tears. This is what it feels like when your heart aches.

I picked my daughter up from school later that same day and listened to her chatter away about her day and who and what she played with. We went to the library, where we played with trains and picked out books. She held my hand in the parking lot, and helped me empty the dishwasher. In the moment, in the middle of our normal activity, I found the air I needed. I laughed. Again and again the pieces threaded back together.

Watching my father deteriorate these past few months has been a series of chest-clenched moments, where I know what I see but don’t want to see it, where I can’t talk about it so most times, I don’t. I’ve been conscious of creating time where my parents can be with my daughter. No matter how terrible he feels, when he is with his grandchildren, when they run to him with their arms outstretched, when my daughter climbs onto his lap and says, “I love you so much,” nothing else exists for him but that moment.

Waiting for his transplant and watching him get worse and worse while at the same time, having so much hope and optimism that he will have a good outcome…again, we have grief and joy, sadness and hope, all mixed up.

I won’t say that the heart-bursting gratitude we have for our daughter, for this life we’re living with her, is sweeter or more appreciated because of all the difficult stuff that exists right along with it, because I can’t imagine feeling any less than this, regardless of what else might be going on. No one ever gets just the joy, that’s not how life works. But if we’re lucky, even with the sadness, we still get joy. We can feel both so completely and simultaneously and have each one be true, be real. Side by side, each a measure of love.

So that’s my hope for 2013. I don’t know how much of the tough stuff the year will bring, but I want to be mindful and fully present in the joy wherever we can find it, to not let it slip by without squeezing every ounce out of it.

CaringBridge and National Family Caregivers Month

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Did you know November is National Family Caregivers Month? I didn’t, until CaringBridge reached out and let me know about their celebration of family caregivers. This awareness month comes during a time of year when we are particularly reflective and attuned to gratitude and the blessings of family, but if you’ve been following my blog lately, you know why the timing of this is particularly compelling for me:

We’re currently trying to find my father a match for a living donor kidney transplant. The ongoing coordination of this outreach requires a lot of time and energy, and more than that, the emotion of it is intense. This isn’t just a cause or a platform or some hypothetical advocacy—this is my father’s life.

None of us, especially my father, are new to caregiving. For example, just before my daughter was born my mother had a catastrophic health event that has forever changed her life and all our lives, and we’ve all juggled going to doctor appointments, picking up prescriptions, staying overnight, cleaning, cooking, doing errands, coordinating care, and managing the emotions that come with seeing people you love suffer and not being able to change it.

The National Family Caregivers Association writes, “Day in and day out, more than 65 million family caregivers in this country fulfill a vital role on the care team. No one else is in a better position to ensure continuity of care. Family caregivers are the most familiar with their care recipients’ medicine regimen; they are the most knowledgeable about the treatment regimen; and they understand best the dietary and exercise regimen.” It is a privilege, and a huge responsibility.

I write this from the perspective of both a caregiver (at times) as well as a patient, someone who has to rely on my husband and relatives when I am the one in a crisis, when I am in the hospital, or unable to leave the house. It is humbling to need to ask and rely on help, and it is challenging in many other ways to be the one providing care. Family caregivers, especially spouses, handle an incredible amount of stress on top of the everyday realities of work, household obligations, etc.

Typically, you don’t see sponsored posts* here. There are many reasons for that, (perhaps another post on its own?) but this time, the themes are so incredibly relevant and authentic to what I’m talking about on this blog, and the company, CaringBridge, is a nonprofit organization I truly admire and have utilized many times over the years, so it seemed like a natural fit. CaringBridge offers patients and families free websites to tell their stories, post updates, and communicate. It offers many ways for people to care for each other during any type of health event and is available 24/7, free to use, and accessible to anyone, anywhere.

Through CaringBridge sites I’ve followed little children fighting cancer, preemies in the NICU, and fellow health writers who just want a safe space to focus on the medical updates in their lives. There is room for photos, messages of support, and other personalized touches, including multiple privacy settings, that help connect patients and families in crisis. There is no advertising on CaringBridge; it is dedicated to families, not profits. That really resonates with me.

Coordination of care is always challenging, especially during acute health crises. After leaving an inpatient team meeting or getting important test results, it can be overwhelming to have to call and e-mail everyone to keep them posted, or keep track of all the details that need to be handled. Friends and family usually really want to help, but it’s sometimes hard to ask for specific, concrete things. In response to user requests to help centralize support, CaringBridge now offers CaringBridge SupportPlanner, an online calendar that helps family and friends coordinate care and organize helpful tasks, like bringing a meal, offering rides, taking care of pets and other needs.

I have been the patient in the ICU bed, struggling to keep friends and family in the loop, and I have been the relative huddled out in the corridor, trying to send texts, answer e-mails, and make sure someone has gone grocery shopping. I am glad services like CaringBridge sites and CaringBridge SupportPlanner exist—living with illness and caring for people with illness is hard enough. Some of the details should be easier to manage.

I am pleased CaringBridge is taking time to raise awareness for family caregivers, and acknowledge all they do on a daily basis to advocate for their loved ones, and I am grateful to have supportive caregivers, friends, and family in my own life. This month, take a moment to acknowledge those you know who are caregivers, and tell us a little about them here—they don’t do it for praise or notice, but a little encouragement can certainly go a long way.

(*And any questions about sponsored posts? Let me know! I very rarely post them, and will always be transparent. This content is sponsored by Caringßridge. Any opinions expressed in the post are my own und not those of CaringBridge.)

On Becoming a New Patient

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As the first post here at my my new home, I thought it fitting to return to that seminal moment in the experience of being a patient: finding out you have an illness.

I recently spoke with someone who is newly diagnosed, someone who has otherwise been pretty healthy. Our conversation reminded me of how overwhelming this whole process of being a patient and navigating the health care system can be. As a lifelong patient, I don’t always pay as much attention to this stage in the patient experience as I should, and I started to make a list of all the things that popped into my head as we spoke, ideas both big and small.

What tips or suggestions would you add to this list? What do you know now you wish you’d known when you first received a diagnosis, or, for those who might still be in the process of receiving one, when you first started experiencing symptoms and going to doctors? I’d love to hear your thoughts in the comment section!

  • Don’t feel awkward or guilty about asking for a second opinion.
  • Ask lots of questions—it’s important you understand what’s going on with your health. If you don’t feel comfortable asking your doctor questions, consider meeting with a new doctor or provider to see if there is a better rapport.
  • Some days will be really good. Some days will be awful.  That is okay. Your feelings as you process this are all okay.
  • When it comes to waiting—waiting for appointments, waiting in hospitals, waiting for results, etc., expect the worst and hope for the best. Time works differently in the medical world.  It’s frustrating, it’s not always fair, but it is a reality of the patient experience.
  • A lot of things might seem scary and out of control, but don’t forget—this is your body.  If something doesn’t seem right—a provide doesn’t wash his or her hands; a lab tech sticks you too many times; the test someone is scheduling for you doesn’t sound like the test you know you need—speak up! It might be awkward, but social graces are not worth your health or your sense of comfort.
  • Spend some time getting to know the online patient community. Sometimes, the anecdotal experiences and wisdom there, as well as commiseration and validation, can be enormously helpful.
  • Remember that everyone’s experiences are different, and everyone is at a different point in the process of treatment, acceptance, etc. Not everything you read online will resonate with your experiences, or with what your doctor tells you. Again, ask lots of questions, and don’t be afraid to bring what you find online to your doctor.
  • Drink lots of water and wear layers when you have blood drawn—being dehydrated or cold makes it even harder to draw blood.
  • You won’t get a lot of rest as an inpatient, but there are lots of things you can do to create a better environment and a sense of calm: familiar books, music, and DVDs make a difference, certainly, but you can also inquire about the necessity of overnight vitals to see if you can get uninterrupted sleep, for example.
  • Sometimes you will really want people with you at appointments, or will want to talk about it. Sometimes, you will want to be alone, or want to talk about anything other than illness. These are your boundaries to draw, and it is okay to ask people to respect them.

Also, if you have a moment, definitely let me know if you encounter any issues with the comment system, the subscription service, or anything else that comes up as I fully switch over to this new space.

(And, I am really happy you followed me over here!)

Invisible Illness Week

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This week is National Invisible Illness Awareness Week.

Normally, I write lengthier posts to discuss living with invisible illness, but this year I did something more interactive. Check out my virtual conference on Pregnancy, Parenting, and Chronic Illness, which is now archived so you can watch it anytime.

Definitely check out the other speakers, too, who covered topics ranging from employment, relationships, communication, and other issues related to balancing life with invisible illness. It’s great to see some familiar faces and colleagues in the mix, and get to know other speakers and advocates, too.

Many thanks to Lisa Copen for her tireless advocacy for people with invisible and chronic illness.

Have a great week!