Virtual Book Tour: Chocolate & Vicodin

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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.

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Food Allergy Love Stories…and a Giveaway!

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So, remember when I talked about striving for balance just a few short weeks ago?

Ha!

Turns out I was onto something with my apprehension, as having a baby, a full-time job, a book to write, and many other appointments, side projects, and health stuff has my head spinning and my alarm clock going off way, way too early.

While I figure out how to make this all work, allow me to resurface just in time to talk about fellow blogger and writer Sloane Miller’s forthcoming book, Allergic Girl. (You can check out her book trailer here, too.) In it, she shares practical, hands-on strategies for living a full life and managing food allergies and symptoms—from dating and dining out to work functions and travel.

In anticipation of the book’s upcoming release, and in honor of Valentine’s Day, Sloane asked some of us food allergy bloggers to think about and share positive food allergic/celiac disease love stories. What’s more, if you share your stories and experiences here, and leave your e-mail in the comments section, you will be eligible for a free copy of Allergic Girl.

Appropriately enough, one of my favorite gluten-free/celiac disease posts from a few years ago is called “Food is Love.” It tells the story of how my husband and I became a couple right after I was diagnosed with celiac disease, and how food played a role in bringing me closer to him and in bringing me back to myself. If you have a second, please click back and re-read it, and then share your positive food stories in the comments section here.

Not only will you have a shot at a free copy of a great book, but you’ll make Valentine’s Day a little more festive ‘round these parts.

This year, I’m navigating a gluten-free, dairy-free, and soy-free Valentine’s, so I am back to making adjustments and accommodations. But, if it means my little girl can continue to breastfeed without getting sick due to her allergies, then it’s totally worth it to me. I suppose that’s a positive food/love story of a different kind, isn’t it?

I’ll be back later this week, and the giveaway goes through February 18, so you have a few days.

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Everyone’s a Critic

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Before my daughter was born, I bought all kinds of books: infant development, breastfeeding, sleeping, etc. I pored over various titles online, reading through reviews and comments, and dog-eared pages for information I thought might be important.

And then she was born, and aside from the basic medical and developmental stuff, I rarely looked at any of them. Instead, I focused on getting to know her, and figuring out her cues so I could respond to them appropriately. All the books on sleep methods? Not nearly as helpful as paying attention to when she was getting tired versus overtired, and facilitating her in getting rest when she needed it. She naps well and naps regularly, she has a regular bedtime that evolved based on her signals, and she sleeps through the night in her crib. She loves her sleep, and thankfully for us, that’s always been part of her disposition.

With sleeping, feeding (I could write a whole post on the immense challenges of feeding this child), and other basic stuff, we figured out what worked for her and for us, and how we do things might not work for other families and other babies.

But with babies, sleeping and feeding are two of the most heated topics, and everyone has an opinion. From co-sleeping to cribs to bottles versus breast, the comments, opinions, and “advice” abound. Recently I read Natalie’s post where she reflected on the judgment/surprise people had when they heard about her particular sleeping arrangements. Her methods aren’t what would work for my family or my child, but they suit her baby’s needs and her needs as well.

As I read it, a post from Gluten-Free Girl and The Chef was still fresh in my mind. In it, Shauna discussed how critical we can be of one another’s food choices, how convinced we can become that our way is the right way, the only right way, instead of accepting that there are many, many “right” ways.

How many times have people told you what you should eat, or how you should cook it, or what you should avoid consuming? (Never mind what you should feed your kids!) I don’t mean the friendly advice we get, or the tips we get when we solicit help or feedback, but the unsolicited comments that really seem to imply we are doing something wrong by doing things a different way.

Sometimes when I read the comments section on online newspaper articles, or the back and forth on popular blogs, I am aghast at how judgmental people can be. Even the online reviews of the baby books I looked at were antagonistic, as if we are divided into non-attachment parenting types or attachments parenting types an never the two shall meet, as if breastfeeding versus formula feeding was somehow an indicator of maternal worth, as if how and where and for how long babies sleep is a measure of parenting success.

It boils down to lack of perspective, I think. Part of that is human nature and inevitable, but part of it is an unwillingness to see things from other points of view. In the spheres of chronic illness and infertility, lack of perspective and its close cousin, competitive suffering, are common:

People who don’t live with constant pain don’t always get why people living with pain can be unreliable, or doubt their pain altogether. People who are healthy don’t always understand how physically and emotionally draining chronic illness can be, and don’t think to check in on that. As a recent tragedy with someone I care about illustrated, people who do not look at life through the veil of depression might not see why things could look overwhelming to someone else.

We all judge sometimes…perhaps too quickly and easily.

People who have gone through multiple reproductive interventions might not have patience for people who think a few months is a long time to not get pregnant. People who are always in and out of hospitals might not see why a short hospital stay or simple procedure is a big deal to someone else.

We all compare sometimes …perhaps without considering that someone’s pain is big and real and present to them, and it does not matter what our own take on that pain is.

There is always someone convinced that if we eat this, or try this treatment, or follow this protocol, or read this one book, our problems will be solved.

We all think we have the answers sometimes…perhaps without considering that there really are many ways of doing things “right,” and what “right” constitutes varies so much depending on background, lifestyle, religion, family, etc.

The first time I had to supplement breast milk with formula was really hard—in my head, my body was letting me down, I was letting my baby down, and so forth. The amorphous “they,” the peanut gallery that dwells in the recesses of my brain, was working overtime. But as my husband pointed out, the most important thing was that my daughter was adequately fed so she could grow healthy and strong…and whatever combination of nursing, pumping, and supplementing that took was the “right” way for us to feed her. I think a lot of us can find similar parallels with this situation in the ways we negotiate and accommodate illness.

Sometimes the biggest challenge isn’t simply what others say, but having the confidence to carve out a different approach in spite of it.

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What’s Guilt Got To Do With It?

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Guilt.

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?)

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So I Dumped My Daughter’s Doctor

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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.

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Bring It, 2011

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I did a brief 2010 year in review last time I wrote, but I can’t let the upcoming New Year arrive without some sort of reflection.

This time last year, we were battered from a long, tough fall but were also incredibly hopeful about the year about to unfold. In fact, in my New Year’s post I wrote:

“It is one thing to say that having hope is important, but it is another to be truly willing to accept things that are out of your control, to have hope things will work out even if in the moment, you can’t see how or when. That is the hard part for me, anyway.”

What a prescient sentiment to kick of 2010, the year of the highest of highs and some truly significant lows. Having hope things would work out even when I could not see or know how was key to making it through some intense moments this year. A grueling pregnancy and delivery and a serious family health situation certainly demanded hope and faith, and the miracles of life and of survival were (and are) truly breathtaking.

I am someone’s mother. I still cannot believe that sometimes, especially when re-reading thoughts from this time last year, when so much was uncertain.

I do not like listing resolutions; I find them limiting. I’d rather work toward a larger goal. So, for 2011, my goal is to work towards finding balance. That might sound really general or clichéd, but my anxiety for the upcoming year is that I will have trouble with balance, so I’m trying to preempt that. I am someone’s mother now, and 2011 will be all about working everything else (full-time job, book to finish, relationships, household stuff, illness stuff, family stuff, etc) around that.

However, 2010 taught me some important lessons that speak to finding balance, namely:

Be flexible with expectations for myself. (Ongoing breastfeeding saga of 2010, I’m looking at you here).

Know that what works today might not work tomorrow. (This refers to baby schedules, body parts, you name it. Roll with it.)

Make those to-do lists a lot shorter and more realistic. (If bed rest didn’t clarify this, a newborn certainly did.)

Remember that somehow, everything will be okay. (I joke that if my daughter could survive 37 weeks in this body, she can take whatever the world dishes out to her and thrive. Kidding aside, sometimes I need to remember this perspective—no matter what unfolds, we’ll find our way.)

And lastly, take nothing for granted. (Then all of the smaller prioritizations, lists of supposedly important things, and conflicting roles somehow work themselves out.)

So while it’s a few days early, happy New Year. Thank you for reading and for following this journey, especially this past year. Whatever your goals or resolutions are, may 2011 bring you peace and happiness and as much good health as possible.

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2010 in Review: The Year of the Baby

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Leslie’s Patients for a Moment prompt for the last edition of the year is a good one: recap the year in posts, or pick a favorite post from the past year.

Indulge me while I do a little of both.

Clearly if you read this blog regularly you know 2010 was the year of the baby here on A Chronic Dose. After talking a lot about chronic illness, pregnancy, and parenting over the past few years, I kicked off 2010 all riled up about the insensitive attitudes and assumptions people have about adoption and parenting with chronic illness. Reading it over, I still get a little red in the face and animated, and hope to continue those kinds of conversations in the near future.

It was a long, stressful, and secretive winter and spring, but the post I am most proud of on this blog and probably more proud of than anything else I’ve written is when I finished the rest of the story of children and chronic illness in April, the backstory that I’d largely kept off the blog for much of our four-year journey towards being parents. I’ve never drafted and re-drafted a piece more, and even though it is a bit longer than normal I think everything is relevant. It represented everything that is part of a journey like this: hope, sadness, forgiveness, frustration, and most of all, thankfully, joy.

Wow, a lot has changed since I “came out” with that post, when I was 16 weeks pregnant and still holding my breath a little bit. When I talked about a high-risk pregnancy by trimester I had no idea I’d go on bed rest shortly after, that my loved one would suffer a catastrophic medical problem, that I’d be in and out of the hospital quite so many times, that I would go into pre-term labor and hold my breath yet again at 28, 32, and 34 weeks.

I’d rather skip ahead to my favorite post of the year, when I could type the words here at last and finally, we exhaled and focused instead on falling in love with our little girl.

Since then we’ve adjusted to being parents and juggling illness and work, and can’t wait to spend out first holiday season with our daughter.

So much has changed in twelve months. I am excited to leave at least some of the medical complexity and anxiety of 2010 behind us and focus on living our new life. 2010 gave us the most amazing, incredible experience so despite the ups and downs, that’s the note on which I am happy to end the year.

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Illness Essentials

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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.

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Giving Thanks

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This is the time of year when gratitude posts are appropriate. From the evolution of gluten-free Thanksgivings to recognizing the support systems in my life, I have never lacked things to be grateful about.

My relationship with gratitude has never been as simultaneously effortless and complex as it is this year.

Without hesitation, I am utterly, unequivocally grateful for my daughter. She is the greatest joy of my life, and every single day we both acknowledge how fortunate we are that she is in our lives. That she is happy, healthy, and thriving, that we made it through the pregnancy to enjoy the other side? Grateful does not begin to describe what we feel for that.

For the team of doctors, nurses, and nurse practitioners who managed an extremely challenging pregnancy ; the lung doctor who championed our hopes and dreams at every turn and fought for us and our baby; and access to a world-class hospital and top-notch technology literally minutes away—we literally would not have our daughter without those people and that place, and we are so appreciative.

For the relatives and friends who checked in on me diligently and visited during bed rest; made months of tests and hospital visits and relative isolation so much easier with phone calls, texts, and humor; and celebrated in our baby’s arrival and continue to support us in so many ways and share our happiness with her now—we realize how lucky we are to have each of you.

The examples above were so easy to write because so many wonderful things have transpired this year they spill onto the proverbial page.

But as is the way, tough things always seem to happen right at the cusp of great happiness and joy, and this year has been incredibly painful and challenging for loved ones in terms of health crises. For the many tears of joy I’ve shed recently, there have been many, many moments of the opposite.

Gratitude is relative. During any kind of medical emergency or acute trauma, it is basic: Please just let this person survive. That’s the only thing that matters. And when morning breaks and you realize your first wish has been met, you exhale a little bit and start to focus on units of time, small changes in status: the next hour, the first words spoken, how many days until heavy equipment is removed. Each little victory is momentous, and each blip or setback is not too crushing because it is better than the alternative you just came far too close to witnessing.

But some days I have trouble with how muddied gratitude and grief become. Of course, the relief and gratitude that the patient is alive and doing pretty well is always there. But there are many losses to process, too; many changes in how we thought life would be, in the dreams we had for the future.

Sometimes I feel like I am cheating on gratitude by indulging in grief or sadness, and the back and forth between happiness/optimism and frustration/anger is tiring.

We are so lucky because it could have been much worse, but that doesn’t mean that where we are is entirely enviable, either. It still happened. I know it doesn’t mean I am not grateful when I think that, but I still feel guilty.

But like we did in survival mode, all we can do is take it day by day. So this year on Thanksgiving I will hold my daughter close and focus on the amazing blessing that she is, and focus on the fact that so many people who love her will be with her that day. We all made it through a lot this year, and for that, I am grateful.

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Giving Thanks

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This is the time of year when gratitude posts are appropriate. From the evolution of gluten-free Thanksgivings to recognizing the support systems in my life, I have never lacked things to be grateful about./

My relationship with gratitude has never been as simultaneously effortless and complex as it is this year.

Without hesitation, I am utterly, unequivocally grateful for my daughter. She is the greatest joy of my life, and every single day we both acknowledge how fortunate we are that she is in our lives. That she is happy, healthy, and thriving, that we made it through the pregnancy http://achronicdose.blogspot.com/2010/10/dispatches-from-other-side.html>to enjoy the other side? Grateful does not begin to describe what we feel for that.

For the team of doctors, nurses, and nurse practitioners who managed an extremely challenging pregnancy ; the lung doctor who championed our hopes and dreams at every turn and fought for us and our baby; and access to a world-class hospital and top-notch technology literally minutes away—we literally would not have our daughter without those people and that place, and we are so appreciative.

For the relatives and friends who checked in on me diligently and visited during bed rest; made months of tests and hospital visits and relative isolation so much easier with phone calls, texts, and humor; and celebrated in our baby’s arrival and continue to support us in so many ways and share our happiness with her now—we realize how lucky we are to have each of you.

The examples above were so easy to write because so many wonderful things have transpired this year they spill onto the proverbial page.

But as is the way, tough things always seem to happen right at the cusp of great happiness and joy, and this year has been incredibly painful and challenging for loved ones in terms of health crises. For the many tears of joy I’ve shed recently, there have been many, many moments of the opposite. Do

Gratitude is relative. During any kind of medical emergency or acute trauma, it is basic: Please just let this person survive. That’s the only thing that matters. And when morning breaks and you realize your first wish has been met, you exhale a little bit and start to focus on units of time, small changes in status: the next hour, the first words spoken, how many days until heavy equipment is removed. Each little victory is momentous, and each blip or setback is not too crushing because it is better than the alternative you just came far too close to witnessing.

But some days I have trouble with how muddied gratitude and grief become. Of course, the relief and gratitude that the patient is alive and doing pretty well is always there. But there are many losses to process, too; many changes in how we thought life would be, in the dreams we had for the future.

Sometimes I feel like I am cheating on gratitude by indulging in grief or sadness, and the back and forth between happiness/optimism and frustration/anger is tiring.

We are so lucky because it could have been much worse, but that doesn’t mean that where we are is entirely enviable, either. It still happened. I know it doesn’t mean I am not grateful when I think that, but I still feel guilty.

But like we did in survival mode, all we can do is take it day by day. So this year on Thanksgiving I will hold my daughter close and focus on the amazing blessing that she is, and focus on the fact that so many people who love her will be with her that day. We all made it through a lot this year, and for that, I am grateful.

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