IRL: The Rare Disease Edition

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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!

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As Long as Everything’s Okay

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It’s a cold, rainy March day and I can’t help but think about this time last year. It was right around now that our basement flooded from epic rains, the infection I’d had since January got worse, and I ended up in the hospital for a few days. It was the busiest point of my semester, and it was when I tumbled down the rabbit hole of work and chronic illness.

And, I was twelve weeks pregnant when I was hospitalized and very worried about the baby, but couldn’t tell you that then.

I can’t speak for anyone but myself, but when you go through infertility and loss you don’t look too far ahead. Just let the baby get through this, I remember thinking. Let us make it to the second trimester okay.

I watched her (of course I didn’t know she was a she then) dart around the many ultrasounds I had that hospital stay, eyes glued to the screen while the medicine floor—charged with taking care of my lungs—consulted with my fetal medicine team, who were charged with keeping the baby safe and evaluating which medicines I could take.

When we were several weeks into the second trimester, and I finally came out about being pregnant, reaching viability (or, 24-25 weeks) was the next milestone. Naturally, people asked me if we had a gender preference, which we didn’t. However, people looked at me strangely when I answered “alive” as my preference, so I learned to say “as close to full-term as possible,” and had conflicted feelings about the familiar old phrase, “as long as it’s healthy.” When we had scares at 28 weeks and I went on bed rest, and more scares at 32 weeks with my lungs and 34 weeks with my lungs and pre-term labor, all we wanted was for her to be okay. Every single day she stayed on the inside was a victory for us.

And then she was born, and I could finally hold this tough little girl who did so well for so long, who thrived even when the circumstances indicated she shouldn’t have been. She was whisked away for a (very short) NICU stay, and all I could think of was, just let her be okay. I couldn’t wait to have her in my arms again.

I’ve thought a lot about the whole “as long as she’s healthy” sentiment the past few months. Thankfully her health issues are not serious, and thankfully they have not impacted her development. She’s a strong little peanut—she’s been sitting up unassisted since she was a 4.5 months old, and is ready to take off and crawl all too soon. I joke it’s from all the steroids I took during pregnancy. We call her a little toughie because she rarely complains, even when not feeling well. She’s known as the baby who loves the doctor’s office, and never stops smiling and flirting with everyone, even when they are poking, prodding, and testing her.

One of her doctors is on the same floor as the pediatric hematology/oncology clinic and there is nothing like seeing that sign to make you feel simultaneously grateful your kid is basically fine and also heartbroken for the children and parents going through so much worse.

Way back, when I was a teenager and younger adult and babies were merely hypothetical, it was so easy to focus on the things that don’t matter. I’m competitive, and admittedly I can be an intellectual snob, and I remember thinking how I’d want my kid to do well in school, to go to a prestigious college, etc, etc.

That was before. Before facing mortality more than once, before falling in love and getting married, before 4 years of infertility, before people told me I would never or should never have a child, before loss and grief and hope and joy swallowed me up all at once. It was before I saw a tiny flicker of a heart beat at 6 weeks, before the drama at 12 weeks, before finding out “it” was really “she,” before tiny kicks and punches and more hospitalizations and complications. It was before I discovered cranberry juice made her dance inside me, before I held her in my arms for the first time, before I saw my husband’s face in hers.

And of course, it was before she held my finger while eating, or started my day by squealing and laughing in her crib; before she stopped what she was doing when someone said “Mama” and stared right at me. It was before I experienced how scary it is to see your baby sick, and how reassuring her big smile could be. It was before she learned how to give hugs, and big, slobbery kisses, before I realized that her deep belly laugh could make me laugh harder than anything else, ever.

She will be six months old tomorrow, and I can’t believe that. Honestly, there are still days I am in awe this is our life. In the middle of the pregnancy chaos I wrote about taking it one day at a time to stay sane. Now, I find myself focusing on taking it one day at a time, simply so I don’t miss a minute of this amazing journey, this “after.”

If she grows up and loves school, great. If she outgrows her health issues, absolutely fantastic. But in the end, as long as she is okay, as long as she is happy and knows she is loved unconditionally, that’s all that matters. Turns out the refrain that sustained me throughout our pregnancy–just let her be okay–sustains us still.

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Audience

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In my writing classes, audience is the fundamental principle we keep returning to for each assignment: Are my health sciences students writing to peers in the professional realm? To a scholarly, academic audience? To the general public, or a patient (ie, lay person) audience? Such audience analysis gives way to decisions about scope of content, vocabulary and diction, and overall tone and approach.

You need to know your audience for your message to be successful,” I hear myself saying over and over.

And yet lately, when it comes to my own writing, I seem to be so hyper-aware of audience and more specifically purpose, that it leaves me wordless. (I know!)

I’ve mentioned having trouble with balance since going back to work full time with a baby, and have also said I’m trying to get back into a groove. And while part of that does mean simply carving out the time to post with regularity, to comment on the posts I read (because I still read them—it’s something I can do one-handed while nursing), and to engage more fully in this online world, that is only part of it.

I need to find my content groove again, too. So often I have concrete ideas, ideas that won’t go away and keep percolating away until they threaten to bubble over, but then I stop short of executing them.

I want to write about aspects of parenting that are enlightening and humbling, like breastfeeding.

(But this isn’t a parenting blog, so stick with issues of parenting and chronic illness, like knowing when to fire a pediatrician, says the little voice.

I want to write about being a parent after infertility, since I never expected just how much that journey would inform my worldview and my thoughts on this joyful little girl I get to wake up to every day.

(But think about the people reading this who might still be going through the infertility nightmare, cautions the little voice.

And I do want to write about finding balance, and feeling like I am falling down the rabbit hole of work again, except that while there is a lot of pressure right now with work-related stuff, there is so, so much happiness and fulfillment and joy with my daughter that I am worried I will not strike the appropriate balance, one that shows how much my heart and mind have stretched and changed and re-prioritized in the midst of the same old problem.

(But can do you that in a way that is accessible?, queries the little voice.

And as cognizant as I am of what I set out for this blog to be a few years ago, and trying to stay true to that, I am even more aware of how much of what is really at the core of where I am right now is not necessarily my story to tell.

(Just because you’re a writer doesn’t make all your material fair game, chides the little voice, a point that speaks to me more strongly than ever.

I feel myself pulling inward. I do think there are ways to discuss parenting and still relate it to chronic illness, and I want what I write to reflect the huge shift in my life, but I also want to protect my daughter’s privacy and not put too much out there about her. You won’t see her name here, or details about her health, but perhaps there is more room for a little window into our lives with her.

There have been so many changes in the lives of people close to me over the past several months, and the repercussions of those changes affect me every day. But other people’s illnesses are not my illnesses, and though we are all connected, I am drawn by the urge to protect the vulnerability I see.

And here we are. The days are getting longer. The snow banks are melting a little bit. I survived the bulk of winter without getting too sick or going to the hospital. There is a happy baby chattering away in her crib right now, thrilled to be awake and content to tell secrets to herself for a few minutes. And, I have stories to tell. I just need to get out of my own way.

(You’ll get there.)

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Rare Disease Day

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Today is Rare Disease Day. Check out ways you can get involved here.

Having rare diseases is an enormous part of my experience living as a patient, if not the most defining characteristic. Read a more detailed and well-argued version of my thoughts here, in my official Rare Disease Day post from a couple of years ago.

(Because, you know, were I to attempt something like that today, with work and symptoms and pediatric doctor appointments and awful rainy weather and physical therapy, I’d blink and miss posting today altogether. And that would be a huge advocacy fail.)

I will say, though, that the rare disease phenomenon was never more omnipresent than during my pregnancy and delivery. A high-risk, medically intensive pregnancy is one thing. A high-risk, medically intensive pregnancy with rare diseases? That’s a whole other kettle of fish. Limited data, limited testing available, limited understanding and awareness of the disease(s) on the part of health care professionals, and very limited experience working with pregnant patients like me is a natural byproduct of living with rare diseases. Like so many patients, I’ve found it frustrating when practitioners don’t know what I have, can’t pronounce it right, and lump me in with patients whose diagnoses are not the same.

But when that happens and it’s my baby’s health at stake, too? Much harder.

When you live with disease so few people have, you don’t have the same sense of community. You might not ever know someone with your condition in person, and you will likely never see a disease-specific walk-a-thon or awareness bracelet. Sometimes, I feel like the real community we have is the umbrella population of rare disease patients, where we are united by what makes us different.

Today is a day for all of us to show solidarity, to advocate for the research and awareness so crucial to our health.

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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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