Letter to Patients with Chronic Pain

Sent to me by the wonderful Arielle - a letter written by a physician to his patients with chronic pain. It's personal, honest, and articulate. Here's the beginning of it (real the whole thing here)

Dear Patients:

You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.

He ends with a list of strategies for interacting with doctors - especially new doctors, because as all patients with chronic diseases know, the more complicated your illness gets, the more doctors get involved - for better or worse, that's how medicine works in most of the United States right now.

I find it fascinating that it's perhaps better to give patients instructions for how to deal with doctors when talking about their illness than it is to give doctors. After reading this, I was trying to imagine what the strategies are that could be given to doctors about how to interact with patients with chronic diseases. Since we're currently learning about cardiology, pulmonology (lungs), and renal (kidneys) - three areas of medicine replete with chronic illness - it seems especially relevant.

Here's what I've come up with so far (modeled after Dr. Rob's list) - please feel free to add suggestions!

1. don't come on too strong. while doctors are used to being in control, patients are used to talking about their own body like it's THEIR body - not so much yours.

2. maybe try not to refer to a million other doctors - take as much responsibility over your patients (who, after all, are your patients) as you can, instead of just their kidneys.

3. forgive them. you don't know how many times they've been asked that question before or what it brings up for them in their history, or how much it scares them. try to understand, but if it doesn't seem possible, try to forgive any strong reactions you can, knowing there are reasons you just might not know yet.

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"Love is the answer at least for most of the questions in my heart, like
Why are we here? And where do we go? And how come it's so hard?"
-Jack Johnson, in his song Better Together

such great heights

they will see us waving from such great heights

"come down now", they'll say

but everything looks perfect from far away

"come down now", but we'll stay.

we'll stay.

The Power of Touch

In an interview with NPR, doctors discuss the rebirth of the physical exam; check out the story here.

It sights scary statistics like: "One recent study in the Journal of the American Medical Association examined stethoscope skills of various kinds among 453 practicing physicians and 88 medical students. Whatever their age or experience, the doctors correctly recognized only 20 percent of heart problems."

The physical exam can be awkward, especially if you aren't quite sure what you're looking for (or you can tell that your physician isn't quite sure) and it often takes a lot longer than getting your blood drawn for labs. But I agree with many of the doctors cited in the interview that there is just so much we can learn from actually engaging with someone.

Perhaps the most important part is explained by Abraham Verghese, physician/writer extraordinaire:

"If you look at the physician exam –- one individual coming to another, telling them things they would not tell their spouse or rabbi or priests, and then, incredibly, disrobing and allowing touch, I think our skills in examining a patient have to be worthy of that kind of trust."

Silicosis and Statues

I spend several Fridays throughout the semester working with a family medicine physician (who I call Dr. Spock on this blog) and while I sometimes have to grumble a little bit on the hour or so drive there (because you know, it's Friday afternoon, it's 80 degrees and sunny, and everyone else is taking a break), somehow we always see at least one case that is a perfect example of what we're studying in class right now and I always leave feeling rejuvenated about medicine.

This afternoon was no different. Right now I'm studying pulmonology, which means calculating lots of Alveolar-arterial diffusion gradients, interpreting flow-volume loops, and talking about just how bad smoking is for you (if that was jibberish, don't worry, you hopefully will never need to know). But in my five hour afternoon with Dr. Spock we saw three patients wh

o were directly affected by these problems - I even got to interpret a flow-volume loop of a woman who had vocal cord dysfunction (small inspiratory volume, with no real change in the expiration curve) which we had just learned TWO HOURS EARLIER! in class.

pretty awesome.

Afterward, I was talking with Dr. Spock about interstital lung diseases - a category of lung diseases that affect the thin membrane between your alveolar sacs (the ends of your air tubes) and the capillary network (that carries the blood that gets oxygenated by the lungs). They keep telling us that the scariest lung disease is not lung cancer but this interstitial lung disease called "idiopathic pulmonary fibrosis" where people classically have a wheeze at the end of inspiration. They also add in a few completely random diseases that we'll probably never see (and will therefore most likely be on our Boards exam in February?!?) - including Silicosis, a type of interstitial lung disease that one gets from working in a quarry with silica. This is very rare and even more rarely dangerous except that it reactivates latent TB. But why do we care - TB is super rare in this country and silicosis is even more rare. Well, it just so happens that Dr. Spock's office is located in "The Granite Capital of the World" and silicosis used to be incredibly common there. During our conversation he suggested (or assigned?) that I go check out Hope Cemetery.

Hope Cemetery is the main cemetery for the small Vermont town of Barre. I expected it to be more or less like your average small town cemetery - quaint, peaceful, lots of similar names. It was

peaceful, but hardly quaint - because everyone in the cemetery worked with or knew someone who worked with Granite, it's more like museum or a sculpture garden than a cemetery. There are graves that look like Rodin scuptures, graves that are full size cars or chairs or soccer balls. There's also a section where everyone died in 1918 (any guesses as to why?) and another where many people died in the 30s (apparently this is from silicosis/tuberculosis). Check out the photos.

I wandered around for forty minutes or so looking at all the beautiful graves, embracing the oh-too-infrequent pause in what has otherwise been an incredibly busy day (week? month? year?).

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"We all die. The goal isn't to live forever; it's to create something that will"

-Chuck Palahnuik (author of The Fight Club)

LEVEL 3 FUN (or Chasing River Gods and Mountain Dragons)

We had our first (er...second?) big exam on Friday, and afterward, I immediately drove South to spend the afternoon with Dr. Spock. Six hours (and 12 patients) later, I was driving back to grab some friends to head to the White Mountains to attempt the Presidential Traverse. This is a hike across a group of the big peaks in the Northeast which are all, interestingly, named after Presidents.

Presidents we summited: Eisenhower, Washington, Monroe, Adams, Madison

Along the way, a few friends started talking about "Levels of Fun", which I thought was brilliant.

Allow me to drop their wisdom on you:

Level 1 fun = fun in the moment (e.g. you say to yourself, "wow. I am having so much fun!")

Level 2 fun = sorta fun in the moment, but mostly you know you'll be really glad to have done it (e.g. you say to yourself, "wow. this will be really fun to talk about later when we're all sitting on your porch drinking lemonade")

Level 3 fun = fun at someone's expense - including your own OR fun you know you can't talk about for a long time because the creation of the memory was a little brutal, but you're still glad you did it. (e.g. "wow. in five years, it'll be awesome to say, 'remember that time when...' but it kind of really sucks right now)

Now that you know that - the story of this weekend: The hike was one of the more intense backpacking trips I've been on, but also one of the most beautiful. The weather at the top of Mt Washington was near perfect - we saw valleys of green trees scattered with yellow birches and clouds that rolled under us like waves (Type 1 Fun).

The terrain included lots of intense ups and downs where we were greeted by beautiful views (Type 1 and 2 Fun, depending on how much my feet hurt). In addition to the hike across the ridge, we decided that in order to spend the night, we needed to hike off the ridge into a valley, then hike back up the next day. One would assume that the hike up the next day was the worst part, but that would be decidedly FALSE.

Here's why: our descent was not on an actual trail. this not actual trail was actually a river bed. this river bed was especially flooded this year because we've had a lot of rain this summer. this river bed mostly consisted of huge, large, slippery rocks. this river bed of slippery rocks was on an approximately 30 degree incline. we were all hiking with large backpacks. and did I mention it was pitch black dark? (we've clearly moved into Type 3 Fun now)

All this had me praying to any higher power I could think of that no one in our group would go crashing down the cliff onto their heads. This, of course, actually did happen to one of my friends - who stepped on the wrong rock and swan-dove into the rocks 15 feet below. But besides getting the wind knocked out of him and bruising his knee, he was miraculously okay. but we all felt a little bit more shaky afterward (not necessarily conducive to balancing you and your pack on the tips of slippery rocks at a 30 degree incline down). But somehow everyone stayed incredibly positive, we worked together, and continued to have faith that there would be an end to the steep decline and that at that end, we would be able to set up a camp. Hours (lifetimes?) later, we reached flat ground, made a quick dinner, snuggled five people into a four person tent and didn't worry about being cold or lost or falling for one more second. ahh.

The next morning we woke up early and hiked the remaining three peaks, completing our final descent just after 9 pm in shockingly good (though tired) spirits. We then proceeded to shuttle cars and people back and forth before finally getting everyone to a nearby pizza place where we gorged ourselves on pizza and beer (and so much water) before separating weepily and driving back home. We got in around 4 am - just enough time to sleep a few hours before starting Pulmonology the next day.

I started this week feeling incredibly exhausted in some (many) ways, but fully rejuvenated in others - and am looking forward to more adventures this autumn! I might try to stay more in the realm of Type 1 fun this time...

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"...let us step into the night and pursue that flighty temptress, adventure"

-Albus Dumbledore

in JK Rowling's Harry Potter and the Half-Blood Prince

where in the world is all the time?

I posted these lyrics near the beginning of my blog (post 2, I think - gah so long ago), but lately they've been spinning in my head again so it felt time for my first re-post.

what can I say? erykah badu just speaks to me...

time to save the world,

where in the world is all the time
so many things I still don't know
so many times I've changed my mind

guess I was born to make mistakes
but I ain't scared to take the weight
so when I stumble off the path
I know my heart will guide me back

-Erykah Badu, Didn't Cha Know

also, check out a recent article in JAMA published by a first year medical student about feeling conflicted about holding patients hands. The NYT well blog is discussing this article as well - and the comments are definitely illuminating for a soon-to-be physicians and patients alike. what are your thoughts on the patient-physician hug: inappropriate or a reminder that we're all human?

Maintenance, Delight, And

"I decided that I would make my life my argument"

-Albert Schweitzer

from 9am to 4pm today I spent doing absolutely no medical school work but instead at the fall Schweitzer Fellowship retreat for my area. When I woke up this morning and biked to school, I was feeling a bit overwhelmed by spending the whole day not doing schoolwork, but talking about service. Yet the day was, in fact, EXACTLY what I needed.

One of the speakers talked about her mantra of how to do great things, which hangs on her bulletin board in the classroom where she teaches math and science to elementary school kids in Maine (and will soon hang on mine right here):

Maintenance.

Delight.

And.

To break it down just a little:

Maintenance: (or "you have to buy toilet paper too")

she described this as all the little, unglamorous things that go into making dreams happen - whether that's balancing your checkbook, seeing what's up with the check engine light on your car, returning emails, or working on relationships. Her anecdote was about how excited her little brother was when he got his first job after being at college - he was raving about how he could afford his own place, he had his own car, he was out to get the world! and her dad said, yup. and now you have to buy toilet paper. to which her brother said, wait, I don't think you hear me: my own place, car, dreams! but her dad said, no, I heard you; but you can't forget about all those little things that make it happen either, like toilet paper.

lesson? budget for toilet paper. or time spending returning emails. or organizing your calendar. or driving to a meeting. and remember that it's not a waste of time - it's the little pieces that make everything happen.

Delight: (the moments that make it all worth it)

even though they may never be as frequent as we like, the word "delight" captures the wonderful surprising moments that come along the way to doing things you care about. Whether that's a smile from a friend, a profound interaction, a good grade, the perfectly timed kiss, having someone say thank you for helping to save my father's life. this keep us going.

And.

her theory with this was that if every time you say the world "but" - you instead say "and" - you give different values to your choices. For example "I would like to go dancing, BUT I have to study" --> "I would like to go dancing AND I have to study" means that you're not necessarily negating the fact that you might be able to go dancing; it reframes the options to equal possibilities.

And I like it.

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"I believe if there's any kind of God it wouldn't be in any of us, not you or me but just this little space in between. If there's any kind of magic in this world it must be in the attempt of understanding someone sharing something. I know, it's almost impossible to succeed but who cares really? The answer must be in the attempt."

-Before Sunrise

As the World Spins

By now I've spent a year and a half learning about a million different things that can go wrong in the body, and I know I've only just begun to scratch the surface. Throughout all this, my own body has held up pretty well. Sure, I probably need more sleep and could be eating more healthily but for the most part, everything works pretty well.

Until now. For the past month or so I've been having spells of vertigo that feel like the entire world just starts to spin in rapid circles with me at the center - like an amusement park ride that I can't get off. This usually lasts for anywhere from a few minutes to an hour and is TERRIFYING. All I can do is try to manually override my vestibular system by focusing my eyes on a particular point and saying firmly to my brain: THAT is not moving, therefore you are not moving. No, really. You're not moving. Even though it feels like you're in the middle of a tornado being blown up into the sky. You're NOT moving.

then I feel like I just got off of this amusement park ride; nauseous, sweating, with a throbbing headache feeling like I just got pummeled in a fight. which can last for hours - or days.

through this, I have been trying to comfort myself by thinking:

this pain and fear you're experiencing will make you a better doctor.

Because I really do believe that it is so important for people who spend their lives caring for people who are sick (and scared) to be able to empathize with the feeling of having your body rebel against you, completely out of your control.

So today I was a patient - and told my story (probably in much too much detail) to an awesome PA at the student health center who asked me how my seasonal allergies are (answer = terrible) and then told me that I have massive fluid built up in my ear, which is most likely the source of this dizziness. She calmed me down (not a brain tumor, she promised) and gave me a prescription for a stronger allergy medication and a motion sickness pill.

I'm hopeful that it will work and I'll feel like I'm finally putting up a good fight against my spinning nemesis soon.

modern medicine and optimism - take THAT, tornado disease.

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"if dreams were like thunder, and lightening was desire, this house would have burned down a long time ago" - Angel from Montgomery

...and to keep it in perspective, some life lessons from monsters

wild geese

Yesterday I was up at 5 am to see my sister off - and instead of falling back asleep, I curled up on the couch by the window and watched the sunrise over the mountains. It was so beautiful and all I could think was: this happens EVERY SINGLE DAY. this beautiful cycle of new happens every single day.

when all day you talk about and learn about all the ways a heart can die, sometimes it's hard to remember all the ways a heart can leap. it's good to have reminders.

Wild Geese

by Mary Oliver

You do not have to be good.

You do not have to walk on your knees
For a hundred miles through the desert, repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about your despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting --
over and over announcing your place
in the family of things.

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"I am certain of nothing but the holiness of the Heart's affections and the truth of the Imagination." -- John Keats

Making Magic Bread

Among the many fabulous things I did on this Labor Day weekend with my sister is bake challah - which I have been meaning to do forever. Here's the recipe we used (it was a hit!)

Challah Recipe

(from Grace)

Ingredients:

2 packages dry yeast

2.5 cups warm water

0.5 cup honey

0.75 cup oil

4 eggs

9 cups flour

Glaze:

1 egg yolk, beaten

1 tbsp water

Poppy seeds

1. Preheat oven to 375

2. Dissolve yeast in water in a large bowl. Add honey and let stand for 2 minutes or until yeast ferments.

3. Add salt, oil, and eggs and mix well

4. Gradually add flour, 2 cups at a time, mixing after each addition. As mixture gets stiff, use floured hands and begin kneading. Knead for at least 7 minutes, turning dough over often.

5. Let rise in greased bowl until doubled in size, approximately 1 hour.

Punch down. Separate challah without blessing.

6. Divide dough into thirds, shape as desired and place in greased pan or baking sheet. Let rise again until doubled in size.

7. Brush with glaze. Bake for 45 minutes.

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the blessing that we like (that is not correct for a Jewish meal, but whatever...)

"namaste" (I bow to the divine within you)

Sudden Death does not mean you are dead (and other things I've learned in our first week of cardiology)

This was our first week of cardiology and It. Is. Awesome.

the professors have done a great job of making everything 1) clinical, 2) logical, 3) not intimidating, and 4) actually pretty fun.

I remember the day we disected the heart last fall the wild power I felt holding another person's heart in my hands; seeing one of the few (only?) organs in our bodies that, when we are alive, is constantly moving be so still was terrifyingly beautiful.

a few things I have learned this week:

• sudden death does not equal death. sudden death means that your heart has stopped working appropriately (also known as ventricular fibrillation or vfib) - but you can be shocked back to life from this, so our professors often say seemingly absurd things like "so how do we treat sudden death?". apparently in real life, this looks like the heart is full of worms - it just wiggles randomly.

• how to read an EKG! okay, so maybe not entirely how to read one, but how to look at squiggly lines and think about what's that means for being inside the heart.

• we used to believe (in the 1600s) that the source of all the blood in your body was the liver.
• your body pumps 5L of blood through your entire body every 60seconds. this makes your heart stronger and better than any pump you have ever seen (think 2o fire engine pumps IN YOUR CHEST)

• venous return is really important and depends a lot on gravity. putting your feet up after a long day of running around actually does help your heart!

• I kinda dig cardiology.

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Hearts will never be practical until they are made unbreakable

-the wizard of oz