Category Archives: Rare Diseases

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

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

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

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

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

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

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

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

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

Psychology Today and recent headlines

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I am thrilled to have the opportunity to blog at Psychology Today. My first post at my new blog, In the Kingdom of the Sick, is up today. I would love it if you’d click on over, leave a comment, and subscribe to it. I will be posting lots of new content and articles over there, and will not replicate the material that appears here on my personal blog.

I also have a new piece up over at Cognoscenti, WBUR’s Ideas and Opinions page, where I am a regular contributor. It’s all about collaboration between patient and provider, and why participatory medicine is so important. I wrote a lot about this in my new book, and am happy to see it getting mainstream media attention.

Up next here: a book review of My Foreign Cities, a memoir about a woman’s experiences living with her husband’s cystic fibrosis.

Rare Disease Day and Awareness

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I am super excited to announce that I am now a contributor to Cognoscenti, the Ideas and Opinions page of WBUR, Boston’s NPR station. They have a great group of writers, thinkers, and innovators, and I am really grateful for the chance to contribute.

My first piece is about a cause I hold dear–rare diseases. Rare Disease Day is February 28, and in my first Cognoscenti piece I tackle what awareness really needs to be: a complement to research and innovation, not the end goal itself.

I would love if it you’d click on over, join the conversation, and leave a comment. Thanks so much, and be on the lookout for more original essays and articles soon!

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!

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.

A High-Risk Pregnancy by Trimester

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We last spoke about chronic illness and weather, and then it went and got all humid on me and I fell into a black hole for a spell.

It occurred to me that while I’ve written about certain feelings about being pregnant, I haven’t written too much about the physical experience since I announced I was pregnant.

There is very little information out there on PCD and pregnancy—an outdated study from the early 1980s here or there, and beyond that, many of us patients rely on anecdotal experiences. I’ve gotten messages and e-mails asking for details: lung functions prior to pregnancy, medications, exercise, etc. I know I benefited from reading about this PCD pregnancy. I suspect many rare disease patients have the same problem.

Since we’re almost into the third trimester, I figured it was a good time to take stock of a high-risk, rare disease pregnancy through the first two trimesters. Even if you don’t have PCD, brochiectasis, or any of the other conditions I have, hopefully some of it will be useful anyway, particularly the emotions involved.

“The pregnancy has been challenging but the baby is doing great.”

That’s my quick and easy answer to people who know me and ask how things are going, and it really is the truth. Things have been going well, in that the baby is thriving, but I don’t make the mistake of equating things going “well” with things being “easy.”

The First Trimester*
*I’m going up to 18 weeks here, even though that spills into the second trimester, because 18 weeks was a real turning point for me.

Typical Pregnancy Stuff: I started getting queasy at about 6 weeks, and from about 8 weeks through 18, I had a lot of morning sickness (like, throwing up for hours each day, anywhere, anyplace). I was pretty tired, though many things could explain that. I’m reluctant to focus on this—after all we’ve been through I swore I’d never complain about pregnancy symptoms. Plus, unless you’re one of the people with really severe, constant, dehydrating nausea (and I know some people truly suffer with this) it’s not exactly a news flash to be pregnant and tired/sick to your stomach. I didn’t mind it that much because it made me feel like a “normal” pregnant person.

Other than that, we had a ton of ultrasounds, very frequent doctor appointments, and other than worries very early on, each scan showed normal growth. Our NT scan went great, all blood work looked good.

Illness-Related Stuff: A lot of the first 18 weeks were rough from an illness angle. I got sick in February and it didn’t fully resolve until May. I was hospitalized for a few days in late March and the weeks following that were the worst. Because my breathing was so labored and the medicines to help it are stimulants, I went weeks and weeks without sleeping more than 2-3 hours a night. When I did sleep my wheezing was so audible I’d hear it in my own light sleeping consciousness (and wake my husband with it) and my dreams were filled with the actual wheezing filling the room, dreams where I was suffocating. I was working a full time job and several part-time jobs (where no one knew I was pregnant yet) and with the lack of sleep and the infection, other medical conditions, the throwing up and, you know, being pregnant, it was a struggle.

Other illness stuff: my thyroid was monitored closely. I saw a nutritionist to make sure I was getting the right amounts of nutrients due to being sick to my stomach a lot and being celiac. My adrenals held up despite having to go back on steroids. I stayed on suppressive antibiotics the whole time, and had IV antibiotics for a short spell.

Emotions: All over the place. Thrilled beyond description to be pregnant. Terrified when I was in the hospital and on some serious meds that the baby would suffer (she didn’t, as many ultrasounds confirmed.) Guilty that something with my body could potentially harm her, when it was my job to protect her. Worried that the whole pregnancy would be like this, cycling in and out of the hospital. Cautious about telling people or “acting” too pregnant in case something happened. Lonely/isolated after being in “lockdown” months due to infection and not being able to contract anything from others (just work-home-work-hospital-home) but knowing it was worth it. Grateful and still in awe this was actually happening.

The Second Trimester*
*Starting this from week 18

Typical Pregnancy Stuff: The stomach problems died down around 18 weeks and now it’s mainly indigestion with very occasional sickness. I started feeling movement at 16 weeks (very light) and by 22 weeks, felt movement all the time. No matter how many times a day she kicks or squirms, no matter where I am or what I am doing, it always makes me smile. It is the best thing ever. Her kicks make my husband laugh out loud, and I could hear that sound forever.

The anatomy scan went well (the second time around) and all body parts and systems looked good. We found out we were having a girl(!). I had my glucose test quite early because of my steroid use, history, and increased risk, and passed it. (Yay!) We’ve had a bunch more ultrasounds and very frequent appointments (every week or two since early in the first trimester) and entered the “ultrasound at every appointment” realm at 25 weeks (and not the quick, in-office portable ones, the real deal.) She continues to do really well, measuring on time for everything and moving around a ton. We feel really comfortable with our high-risk maternal fetal medicine doctor, nurse practitioner, and nursing staff, and my lung doctor sees me more often than he did and is totally in the loop.

I’ve started to really show recently. I’ve had SPD (pelvic bone out of place, hip/thigh/back pain) for weeks now, but learned exercises and stretches to help it, and get in/out of cars and bed more slowly. Again, it’s not something that bothers me because it is also sort of normal to have those pains, and that is reassuring to me in its own way. My feet have started to swell but summertime flip-flops make that an easy fix.

Illness-Related Stuff: While some of the risks are much scarier, in some ways the second trimester is way better than the first.The winter/spring nastiness finally died down in May. Now I have really good days and really bad ones, and take advantage of the good ones. The humidity is way more challenging than it normally is for me. Some low oxygen readings prompted my team to have me get a pulse oximeter and take readings on bad days when I am not moving air. I learned a baby’s threshold for oxygen is much lower than ours, so a level in the low 90s or high 80s is problematic; mid-80s could be lethal. So I have a certain reading I am supposed to call them if I hit, and they’ll admit me and put me on oxygen. I’m still on (safe) suppressive antibiotics because a fear is an infection could trigger early labor but right now do not have an acute infection.

I also check my blood pressure a couple of times a day because at around 20 weeks, I started having high blood pressure. I’ve been schooled on the other warning signs of pre-eclampsia and keep an eye out for them. So far, it’s just high blood pressure and again I’ve been given a certain BP reading I shouldn’t go above, and if I do, I need to call, and need to call if I notice any of the other symptoms of pre-e. I try to stay on top of different readings without worrying unnecessarily or getting stressed out.

Other illness stuff: My thyroid is behaving itself, my intense food aversions have mellowed and I have no issues with managing the celiac stuff. I am tired, but what pregnant woman isn’t. Plus, days when I am not moving a lot of air or really work to breathe wear me out, but that is nothing new.

Emotions: Sheer joy. Intense relief when we hit the milestone of viability. Apprehension about keeping her safe and sound in there for at least another 10 weeks. Feeling powerless sometimes when I think about something wrong with me hurting her or causing early delivery. Encouraged that we have all sorts of plans and protocols in place should any of our major potential scenarios play out. Hopeful that things will go smoothly and she will get as close to full term as possible. Proud of my body for doing its job and allowing her to grow; frustrated when I allow myself to think it’s the same body that could cause real problems. Incredibly excited to meet her, and so grateful to get the chance to experience these milestones and feel her grow inside of me. Excited to get to the third trimester, and aware it will likely be an intense few months with even more monitoring, appointments, etc.

There are a lot of moving parts in any high-risk pregnancy (heck, in any pregnancy, high-risk or not!) but I feel like we have a good handle on the variables we can somewhat control, and I’ve accepted some things are beyond our control.

I wouldn’t trade a second of it, and most of what we’ve faced we were prepared for. So far, it could have been a lot more complicated, and we’re grateful for that. It is an amazing experience we doubted we’d ever have, and we try not to take a second of it for granted.

I’ll post more later on third-trimester experiences and concerns, but end with the most important point of all: the baby is doing great. With that in mind, everything else is manageable.

Where’s the Patient in Health Care Reform?

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I’ll admit, it was a bit conspicuous. After over a year of posts comparing facts in health reform, looking at private versus public insurance plans, even meeting with President Bill Clinton to discuss health care, the week the monumental new legislation passes, I am silent.

I know, right?

Here’s the thing. I wanted to comment, to turn on the analytical part of my brain that has logged into press calls and covered health care summits.

However, I was too busy being a patient to attend to this blog. More specifically, I watched late-night cable coverage of the vote from my hospital bed, where hours of stacked medications, oxygen, and all sorts of pwerful drugs tried to stabilize me. I managed one paltry Tweet about it, but my IV beeped as soon as I moved my arm to type and the whole not-getting-enough-air thing made me foggy.

When you’re working so hard for breath, there is little room for anything else.

In a strange way, perhaps that is somewhat fitting. Over the past few weeks, it seems like the rhetoric, the scare tactics, the fighting over funding and abortion and so many other flash points have totally taken the focus away from the one group at the heart of this debate: patients.

“The only people who are happy with their health care are either rich or healthy,” I joked to a relative, one who is vehemently opposed to health care reform (or, at least this version of it). But there is truth there-most health plans are designed for healthy people who rarely need to use them, who do not have to wage appeals and write letters and make so many important life decisions based mainly on the availability of those plans. If health insurance is something you only have to think about when it’s time for open enrollment, then it is a lot easier to shove it off as someone else’s problem.

If you’re fortunate enough to have chronic illness and can afford the platinum plans where you do not worry about annual caps or having treatments denied then you do not live with the same sense of precariousness and vulnerability millions of Americans do.

Let me be clear about this: I have reasonably good insurance and have always been fortunate to have reasonably good insurance. I fight my battles regarding medical necessity (complicated by having rare diseases, for sure) and I still pay a lot of money out of pocket but I cannot complain. However, whether I’m feeling okay or lying in a hospital bed, I work seven days a week in order to get those benefits-a full-time job, part-time jobs, consulting work, and book-writing. I have made huge, career-altering decisions based primarily on health benefits. Physically, emotionally, mentally, I have made compromises and adjustments in the name of health insurance. A lapse in coverage has always been a catastrophic thought for me.

For me, simply being born tagged me with the label of “pre-existing condition” and for three decades I have lived underneath the bureaucratic burden of that title. Knowing that is one fear patients with existing chronic illness don’t have to live with anymore is huge. Knowing that down the line, I could have more flexibility in terms of choosing career options based on proclivity and preference and not benefits is equally huge.

I find so much of the drama around this bill ironic. Some frame it as a right to life issue but because I excel at being the devil’s advocate, what about the lives of millions of Americans that will end too quickly because of lack of appropriate care? Some focus solely on the economic issues around the legislation, but those of us who’ve been paying attention to chronic disease long before it became the hot-button issue for discordance and grandstanding also know that we already spend 75 cents out of every health care dollar on chronic illness and that prevention is much less expensive than the complicated interventions that are standard operating procedure right now.

But honestly? Right now I can’t even start unraveling all these threads.

Intellectually I understand the concerns of, say, small business owners or entrepreneurs worried about how the bill is funded. I understand people who fear the government may not be up to the task of administering such a broad program. I understand this legislation is far from perfect, and as we’ve seen here in Massachusetts, I know that when you implement a sweeping change you need to prepare for the consequences, both intended and unintended.

But all of the rhetoric, analysis, or debate in the world does not change the fact that for many, many patients out there, the debate is anything but rhetorical and the consequences extreme.

I’d done everything right to manage my conditions but still ended up in the hospital. I can only imagine the bill for the diagnostic tests, the x-rays, the IV meds, the nebulizers, the pills, etc. But what is truly unimaginable is what would happen if I had to pay for that hospital stay completely out of pocket.

My house, my health, my family, everything I’ve worked so hard to maintain, would all be threatened.

As I lay there, covered in EKG leads and medical tape and beeping from multiple monitors, the ticker tape reports of the “Baby-killer” outburst and protests flickered across the screen. I adjusted my oxygen and raised the volume a little bit louder as our leaders began to speak.

It is easy to be reactionary and inflammatory when you have the luxury of health, I thought. When you’re consumed with survival mode, suddenly things are a lot more simplified.

As much as I don’t want to be defined by this role, I am a patient. And what better place to be reminded of our vulnerability in this system than in the hospital?

I am one of the lucky ones. I know when the bill arrives or I need to schedule another follow-up appointment with a specialist that these events will be insignificant.

But shouldn’t it be that way for everyone else out there trying to survive?

Hopefully soon I’ll have something more insightful or analytic to add, but for now I am compelled to focus on the one thing that seems to get shoved to the side in all of this: the needs of the patient with existing illness.

The Importance of Being Useful

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I went in for a lung check-up the other day and something truly unusual happened: I was quiet. Well, of course I really mean my lungs were quiet, because it was a very early appointment and my lungs are tight and quiet in the morning and get progressively wheezy and junky as the day unfolds.

I’d never had an appointment so early in the morning without an acute infection making things noisy.

“I’ve never heard you so quiet,” my doctor said. (After we’d talked about my book research, my other jobs, his grant writing, and lots of other stuff, because he’s the best.doctor.ever.)

“Ah, welcome to the morning lungs. My physical therapist always tells me I have two sets of lungs with totally different personalities, the 6am set and the 6pm set,” I said.

We moved on to other topics, but as I drove home, I thought about the many different sides there are to any illness, and any patient. I can be a wheezing, hacking, choking mess at night when my therapist arrives, but if you saw me at noon on a good day you might not even suspect anything was wrong.

That got me thinking about the days before my diagnosis, when there was only one “lung personality”—out of control. There was no chest PT, no understanding of the causes of my inflammation and infection or the complicated ways in which many of my medical problems were intertwined.

A few months ago, I wrote this post on disappointment, and the importance of writing a new script for ourselves, even when we might not want to. But I now realize that sometimes it works the other way around: sometimes good things happen, and we change our script in ways that make our lives better…but that doesn’t make it any less of a transition.

I was elated when, after months of diagnostic tests and procedures and a lifetime of serious illness, I got the right labels, the ones that matched my actual experience of illness. I was no longer the mystery lung patient, dodging whispers of supposed noncompliance and literally living on toxic doses of steroids.

But as awesome as it was, it took me some time to accept it was real, this newfound clarity. It took months for me to believe my rigorous daily regimen would actually improve my quality of life, that “normal life” could be something other than the snippets of time that occurred in between prolonged hospitalizations. I thrived in my new life post-diagnosis, but a tiny part of me, the part still fighting for self-preservation, kept wondering when things would fall apart again.

That’s not to say things haven’t been hard or my health hasn’t deteriorated, but several years later, I no longer doubt things in the same way. I’m realistic about my situation, but I also do not expect calamity to be an automatic part of my life.

I am not defined by labels so much as aware of their power to both limit and liberate. Sometimes good things happen in unexpected circumstances and you just have to let go and allow yourself the chance to live out the new script. Of course my PCD/bronc diagnosis is just one example of many, but it’s the one that seems most illustrative to me today.

The other day, the always interesting and often controversial Penelope Trunk had offered this pithy bit of advice on her blog: “You should be useful to readers each time you post. It feels better. For everyone.”

That’s something I think about often when I post. So, readers, I guess the take-away from this extended anecdote is this, something I’ve said before:

It is not unreasonable to hope for good things. That’s true in all aspects of life, but sometimes when you live with chronic illness, it’s an important reminder…and hopefully, it’s useful one, too.

Learning To Be a Primary Care Patient

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I do not subscribe to the saying, “There’s no such thing as a stupid question.”

There are many, many stupid questions. So opposed am I to the asking of stupid (by which I really mean unnecessary) questions that I go out of my way to acknowledge that a really good question is just that when I hear one. It’s a delicate balance, being accessible and approachable and trying to instill independent thought and accountability at the same time.

Asking to clarify a particular point in an assignment prompt? Totally valid question, and likely a question others have, too. Asking when that assignment is due, when that information has been available in four places, hard copy and electronic, for weeks? Less valid.

You might wonder what any of this has to do with primary care (though I did just have a long conversation about the culture of instant gratification and unwillingness to dig around for answers when it is so easy to text or e-mail someone to do it for you with a pediatric nurse practitioner in primary care, and she had a lot to say…)

I digress.

No, this post isn’t about the downsides of technology, or the ramifications of all kinds of information, vetted or not, being available with little effort on our parts. It’s about what happens when a rare disease patient enters primary care:

She asks stupid questions.

Guilty as charged. (See? Aren’t you glad I didn’t totally jump on my soapbox earlier?)

After years of floating between specialists, I love having a primary care doctor. More than that, I really like my specific doctor, and his whole group, and I love that my primary care doc and all my other specialists are all in communication with each other.

But I’m still learning how to be a primary care patient. I’m used to disasters and calamities; I’m used to avoiding the hospital merely because I already have all the equipment at home. So this week, when I had some progressively painful jaw symptoms that were likely something very minor, I was hesitant to make an appointment. However, with several dozen ear and sinus surgeries, a major mastoid surgery, and infections that have impacted my jaw bone several times under my belt, it seemed worth checking out.

The earliest appointment was two weeks away, or I could make an appointment in urgent care. I hung up without making an appointment, because this wasn’t urgent, and I didn’t want to take up an appointment slot when they are acutely ill patients out there. It is H1N1 season, after all.

I was told by several people I was over-thinking the term “urgent.” So I e-mailed my doctor, cringing at the knowledge I was now flooding someone’s inbox with a stupid question (remember, guilty as charged): should I just wait the two weeks, or make the appointment?

“Urgent” is all relative to me, to all patients with chronic or rare diseases. To me, it’s how much blood I am coughing up that makes me consider contacting my doctor, not blood itself. It’s how much lower my peak flows are, not just that they’re scary low, or how erratic my blood pressure or pulse is, not merely that they are erratic. I don’t go to the doctor every time I am sick because then I’d always be at the doctor. In fact, I try to avoid it, because I don’t need the exposure to other germs, and I’m at the hospital for tests and maintenance enough as it is. We have a plan set in place, and we follow the script unless things get very serious.

Of course, there are extremes to this, and times I should have gone to doctor and I didn’t (hello, trauma room, if only I’d avoided you) and times I erred on the side of caution and ended up wishing I’d just dealt with it at home like I normally do.

But the point is, for many of us, the baseline we use for “urgent” is totally skewed. I’m not totally sure how to behave appropriately in a primary care setting, but I’m figuring it out as I go.

My doctor assured me my question wasn’t stupid. Maybe the real issue isn’t that it was an unnecessary one so much as I simply didn’t know how to answer it on my own—my experiences didn’t speak to this kind of judgment call in a helpful way.

Luckily it’s not simply my call to make, and asking a professional made it a lot easier.

Anyone else out there been caught in this kind of over-thinking when it comes to “normal” health stuff?

On Listening and Judging

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I’ve been thinking about the online patient community a lot lately. When I first started blogging a few years ago, I was in such a different place. Not only was I completely new to the concept of the medical blogoshpere (I was just a girl sitting in office hours who decided to start a blog), but I was quite new to many of my diagnoses, namely primary ciliary dyskinesia, bronchiectasis, and celiac. I was also in the middle of acute adrenal failure.

As I wrote in Life Disrupted, it wasn’t that getting labels suddenly meant I was “sick.” Certainly the twenty-three years, numerous surgeries, and months in the hospital that made up my medical history did that. Rather, the correct labels now meant the descriptions of my illnesses finally matched my experiences.

I had a lot to learn about my conditions, my treatment plans, and most of all, how I wanted to mesh what I needed to do for optimal health with my professional and personal goals. I learned a lot from my new doctors, from my own research, and from other patient bloggers. Each source provided a different type of information, from clinical summaries of prognoses and data points to personal, anecdotal wisdom from those living with the treatments and side effects every day.

I often write how much I believe the universal experiences of illness far outweigh the disease-specific symptoms: getting a diagnosis, finding a compatible doctor, struggling with employment or personal relationships, navigating the process of acceptance, etc. Based on the variety of different patient and disease blogs I keep up with, I am further convinced of this.

But there’s something else I’ve gained from reading and processing other peoples’ disparate stories: I think I am less judgmental than I used to be.

It’s easy to think your reaction to a diagnosis, your treatment plan, or you feelings about particular procedures or practices are the “right” ones if they are all you know or think about. Sometimes the differences are smaller, like maintaining a gluten-free lifestyle by choosing only naturally gluten-free foods versus learning how to bake gluten-free equivalents of “regular” food, inhaling a certain kind of saline in a nebulizer over another, or choosing one type of specialist to handle a condition versus another.

Sometimes they are more profoundly life-changing, like deciding to try an experimental procedure, putting a name on a transplant, or deciding which way a family is going to bring a child into the fold.

Regardless of the enormity of the decision, having access to so many interpretations and points of view has reinforced to me how important is to see things from many angles, to respect that what works for me might not work for someone else and vice versa, and to understand that we don’t always have to agree with other people say, do, or write, but that’s okay—it’s not always our call to make.

When you write things and post them publicly, you sign up for discussion and sometimes disagreement—that’s what makes blogging so dynamic, and what makes it a conversation, not a monologue.

But sometimes, in the offline world of the healthy that each of us spends so much time in, I want something different. I don’t always want a conversation, or debate, or input that becomes static in my brain. When I’ve done the research and had the talks and made a decision about my life or my health, I don’t want to have to explain or justify or defend.

Sometimes, I just want the act of listening to happen. And hopefully with listening will come understanding, but I’ll take just the listening for a start.

Does that make me a hypocrite? It might, and I accept that.

Every now and then, I wish there was a way to easily moderate the comments that happen in real-time…what I really want to say is trust me.