Chronic Style

The beast of balance.

2012-02-13T10:28:00.000-08:00

If you've got 5-minutes, check out this honest and humble piece by Lily Altavena on balancing her Crohn’s disease flare-ups as a student at NYU: When Chronic Illness Interrupts the Rhythms of College.

Lily does a great job of shedding some light on the intensity of living far from home, in a new city, with obligations that sometimes no one else can help you with (even if they really want to). They certainly do add up quickly with the burdens of such a tremendously unpredictable disease and it seems like she handles it all quite stoically.

Food allergy fodder.

2012-01-09T20:48:00.000-08:00

Having been hyper-aware of my own aversions for quite some time now (I break out in hives just thinking about littleneck clams!), it seems to me that food allergy awareness is at an all time high.

In light of that, I heard just the audio from this Portlandia clip and nearly wrecked my car I was laughing so hard. Just watch, that’s all I can say: Allergy Pride Parade

Medifactulous.

2012-01-02T13:50:00.000-08:00

“Get your facts first, then you can distort them as you please.” —Mark Twain

For me, one of the hardest things about learning and growing with a chronic illness is deciphering between the so-called truths around your disease and the cold, hard facts. What is the right treatment (for you)? How do you balance the opinions of your friends and family with your doctor’s expertise and your personal instincts? When should you turn off the internet, close your medical dictionary and take the next step?

Honestly, I’m not sure. I only know that everyone’s situation is unique. Personally, I like to equip myself with as much knowledge as possible and the more tools I have, the better. With that in mind, Medify is one of the newest arrows in my quiver. I just started using the site and really love what I’ve discovered so far (it is still in beta though, so make sure and let them know if you see something that can be improved).

Medify allows you to see real patient experiences, easily discover new scientific evidence around the treatments and diseases you’re interested in tracking, and even build connections around relevant current research with physicians and other experts. My favorite part? Everything is 100% vetted by medical researchers — and that’s more than I can say for most health news these days. Mark Twain would be proud.

(Happy New Year!)

What are some of your favorite new health tools? Let me know and I’ll share my findings in the next month.

Cure-all or quack remedy?

2011-12-13T08:29:00.000-08:00

I get a lot of advice from people who don’t have Crohn’s disease or Wegener’s about what I should be supplementally taking and/or eating — and last time I checked, none of them were nutritionists or doctors (she says, cynically). I know, I know...everyone is just trying to help.

I’m all about the science though — and perhaps that is why I absolutely love this infographic (left) from Information is Beautiful around the scientific evidence for many health supplements (thanks for pointing it out Lindsey!).

View the interactive map here. And throw out that giant bottle of resveratrol already.

Twitter goodness

2011-12-09T11:40:00.000-08:00

I’ll keep this one short because this story is just so awesomely succinct (and a bit older, but every time I read it I smile).

@ChrisStrouth tweeted “sh*t, I need a kidney” and then got one. Read more here = stories.twitter.com/chris_strouth

Many other great Twitter stories here = stories.twitter.com

Missing the bigger picture, literally.

2011-11-03T23:11:00.000-07:00

First, let me apologize. I have been a very bad blogger over the past few months, but I have a great excuse — I was getting married! And then I took a well-deserved break in Indonesia with my new husband for some surfing, sleeping, eating and relaxing.

So while I’m being a bad blogger — and talking about marriage/weddings — I’ll just continue and write a post about something that has nothing, really at all, to do with chronic illness (beyond the fact that it made me sick to my stomach). I read this piece earlier today and could not stop shaking my head in disbelief: Suit Against Photographer Seeks Re-Creation of Wedding After Divorce

Allow me to summarize. A man who was married in 2003 and is now, not surprisingly, divorced from his wife, sued his photographer for missing the last 15-minutes of their wedding. More specifically, the last dance and the bouquet toss. The suit was filed in 2009, six years after they were married at the tipping end of the statute of limitations.

As someone at the beginning of the marriage journey, I just couldn’t believe this story, so I felt obligated to share in the absurdity of it all. But then again, I have amazing pictures of my wedding — and above is what happened in the last 15-minutes instead of the bouquet toss. (Thanks Hunter!)

(above) John and Paul Clark in what was later deemed “Clark and Stormy.”

Panama-monium.

2011-09-16T09:08:00.000-07:00

On a flight a few days ago I flipped open my in-flight magazine to this page (left) and thought, “Wow.”

If you can’t read it well enough (sorry, bad photo), it says, “If you are a tourist and have a medical emergency Panama gives you free insurance for 30 days.”

Now I’ve of course heard about medical tourism for more than a decade, but I’ve never seen an advert as like this — and I have to say, for someone like me, who just spent a boatload of dinero on my medical evacuation insurance just in case something happens on our honeymoon to Southeast Asia, this is super-compelling. Seguro al Turista. Basically — tourist security. What an idea. To read more, visit the Panama tourism site here.

I wonder though — what happens on day 31...?

Helping patients stay on top of prescription meds through design.

2011-08-23T14:01:00.000-07:00

Love this piece by Smart Design’s Eric Freitag: Can Design Get People To Take Their Meds? Absolutely.

How does my mom know when she’s supposed to take X, Y, or Z pill, or what meds she’s supposed to take on any given day? The truth is she doesn’t know for sure.

More here.

6 things to never say to a friend who's sick (and 4 things to say).

2011-07-22T20:00:00.000-07:00

My good friend (thanks Alana!) shared this article with me a while back and I’ve been meaning to write about it ever since.

I was reminded in particular about it when a friend recently informed me that his wife was sick and again today at the hospital while waiting for the umpteenth time to have (what felt like) all of the blood removed from my arm. It’s reminiscent of my self-imposed duty to make a list for folks of all of the things that should be done for a significant other, friend or loved one when they fall ill. The things I always wish people would do for me in those instances — and generally (luckily) do.

Bruce Feiler does an incredible job of summarizing things — you should definitely read the article — but I’ll tell you some of my favorites from his never ever list:

—Never ask what you can do to help.
That’s right — just HELP. (This goes for all women — healthy or sick — and life in general in my opinion.)

—Never inundate a sick person with your miracle solution idea.
“Yes, I tried the wheat-free/dairy-free/keyword-here-free diet.” This gets exhausting — I can tell you from several personal experiences — even if I’m quite sure everyone means well.

—Never say “You look great.”
This is an especially mean thing to say to someone who is on/off steroids and/or may have lost/gained weight as a result of their recent, personal trauma.

All this said, I particularly love his advice on the things you should say in this situation. Read on and bon week-end!

Man robs bank for healthcare.

2011-06-21T12:59:00.001-07:00

Yep. I’ve definitely thought about doing this before — I mean, if things got really bad and I needed to.

Fascinating. And ummmm, quite telling I’d say = Man robs bank to get medical care in jail

Living by numbers.

2011-05-13T21:35:00.000-07:00

I’m heading to TEDx Silicon Valley tomorrow at Stanford University and am excited to see Ron Gutman, founder of HealthTap and lover of all things health and smile-related host the event.

Also eager to hear from Daniel Kraft, a pediatric bone marrow specialist and flight surgeon (...is anyone on Earth more calm and collected than a flight surgeon? I think not.) who has invented a better way to harvest bone marrow. Amazing.

And there’s so much more to see. Check it out via their live stream tomorrow, here = TEDxSV.org

Bon week-end! And here’s one of my favorites (it is old, but great) = Jennifer Lin improvs piano magic (look for Goldie Hawn toward the end!)

PatientsLikeMe is finally like me.

2011-04-17T21:35:00.000-07:00

As a longtime fan of PatientsLikeMe*, I was ecstatic to see an email from them last week stating that Crohn’s disease sufferers are now an inclusive part of their patient-community. Upon further investigation, it looks like they opened the flood gates to patients with any condition on April 11 — the site was previously only available to 22 types of patients (including ALS, Parkinson’s disease, HIV, depression, epilepsy, fibromyalgia, multiple sclerosis and organ transplants).

I’ve been playing a bit on the site, particularly this weekend, and am truly impressed by not only the community, but the tools available for real-life guidance in the day-to-day life of a professional patient like me. Subscribing to other patients with similar profiles is super intriguing also. But the amazing thing that you must see right now is this data visualization of patients viewing other patients: patientslikeme.com/elapsed_profile_views (crazy, right?)

More to come as I add to my profile and meet new members. Really incredible stuff. Well done PLM!

*Wondering what PatientsLikeMe actually is? They are the “leading online community for people with life-changing conditions. Patients embrace the open sharing of personal health data because they believe that information can change the course of their disease.”

The kid’s speech.

2011-03-27T16:17:00.000-07:00

Speech Buddies R Standalone on Vimeo.

You know that moment you have as an adult where you suddenly realize how happy you are that someone pulled you aside early in your life and said, “Hey, you should really pay attention and work on fixing this. You’ll be glad you did later on.”...? I had that moment recently while watching The King’s Speech. If you haven’t seen this movie yet, you should. It’s fantastic and — relevant to this post — chronicles the life of King George VI of England as he struggles to overcome his speech impediment in what is arguably one of the most famous radio addresses of all time.

As a kid, I had a very minor lisp — and even now I sporadically stumble over words like Elizabeth (just ask my friend Elizabeth!), particularly when I’m nervous. I was fortunate that our neighbor and one of my mom’s closest friends, a speech therapist, would occasionally pull me aside and teach me tongue placement as well as how to enunciate certain words. I can still remember looking at Ms. Freeland and wondering why saying TURRRRTLE was so important. I get it now.

That, of course, has to be why Speech Buddies really caught my eye, errr...ear. Speech Buddies is a series of five tactile learning products that teach you both how and where to place your tongue while speaking. (This will all sound very strange if you’ve never had speech therapy, but trust me, as a kid, this type of method worked wonders for me — and I know it would work as an adult as well.)

I included their video (above) for the R sound — since that was one of my troubled sounds. Check out their introductory video and more on SpeechBuddy.com. (I also loved this post on Mommy Speech Therapy.) Maybe you’ll be the person to give some kid that reflective moment I just had.

My proverbial cane (part 2 of 2)

2011-03-16T19:41:00.000-07:00

(see part one here)

“A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illnesses.” —Hippocrates

I am not one to often quote ancient Greek physicians, even after 4 years of Latin that I’ve entirely forgotten, but Hippocrates had a point. And perhaps this is why canes make people sad (see part one’s “minor generalizations” for details). Maybe it reminds them that all is not what it seems and to never take even the most insignificant things (like walking) for granted. Jeez, I know I don’t!

My physical cane is a minor part of the everyday reality of dealing with some pretty nasty stuff. It sits in a corner of the bedroom, and comes into plain view rarely, not unlike my proverbial cane. It’s the stuff no one sees, really ever, until things have gotten downright awful. But honestly, on average, it isn’t so bad — and who doesn’t deal with difficult things on a day-to-day basis? I like to consider Edvard Munch, whom you know him as The Scream artist, but I think of as the Norwegian guy who knew a whole lot about being sick and once said, “Without fear and illness, my life would have been a boat without a rudder.”

This week, in honor of one of my projects and with the help of an extraordinary team, we were able to put 45 more people into the bone marrow registry (34 in person and 11 more by mail). In light of all that is happening in the world, this seems Lilliputian. A literal drop in the bucket. But it makes me so happy to know that if someone like me — or someone entirely unlike me — needs a marrow or stem cell transplant, they now have 45 more chances to find a match. And with my fiancé’s and brother John & Jeff’s birthday presents of registering for the bone marrow registry, that makes 48. And how cool is that?

That feels way more like a rudder and less like a cane, but then again I’ve always been more comfortable with Piscean analogies.

My proverbial cane (part 1 of 2)

2011-03-12T16:57:00.000-08:00

Not too long ago I had a benign tumor, or as my surgeon later called it — a mass of “angry tissue,” removed from right knee. Six months and several knee drains later (ouch!) I’m still in physical therapy and still icing it nightly. To boot, there’s now a debate over whether this is certain to be a part of my everyday life — see PVNS for more details — as it appears some of the mass has already grown back.

I was originally on crutches post-surgery, later a cane, and eventually walking on my own. But with systemic flares, from both Crohn’s and Wegener’s, my knee uses those advantageous moments to swell up and promptly remind me of my favorite French word, pamplemousse. This intermittently requires the use of a cane and prompts the saddest and most somber looks you’ve ever seen from complete strangers. Hence I have learned the following: (prepare yourself for some minor generalizations)

One = Crutches are a welcome invitation for discussion. E.g. “What did you do?!” or “Were you skateboarding/surfing?” or “When I had my _CL repaired I was out for __ months...”
Two = If you are young, requiring the use of a cane (outside of Halloween) will make people sad and quiet. No discussions are prompted by said use of a cane, even if it is cool and purple like mine, only wide-eyed looks of despondence are the typical comeuppances.

To be honest, it has been a(n) hilarious observance of humanity and I’ve begun to treat it as an anthropological experiment. I can sense that people want to ask me, “Hey, why the cane?” but no one says a word. Personally, the most intriguing part of the whole cane experience would be that this is the very least of my health woes and yet it is the most available and apparent.

You can likely sense where I’m going with this, but I’ll leaving you hanging for the moment. Time to go see if the surf is entirely back to normal after our tsunami scare. To be continued...

Blood cancers and a call for inspiration.

2011-02-20T15:51:00.000-08:00

A few years ago, I had a discussion with an oncologist at Stanford who explained to me that cancer is truly a chronic illness. She said that after an experience with cancer, whether it was your battle or your best friend’s, it becomes a part of the fabric of who you are — for better or for worse. I’ve yet to meet one person who hasn’t been affected by cancer in some way and I’ve been thinking about that conversation quite a bit lately. I’d like to reflect upon the for better, here goes...

We recently launched an OpenIDEO challenge around blood cancers and how we might compel more people around the world to register for bone marrow donation. For me, it seems simple enough — you can order a kit via BeTheMatch.org, attend a drive, or set up your own initiative. The process is as easy as having your cheek swabbed — that’s right, no blood. Yet, there still aren’t nearly enough donors in the registry — particularly for people of South Asian and African-American descent.

So what can you do to help, right now? Aside from the above, you can log-on to OpenIDEO and upload an inspiration. Be sure to check out Jennifer Aaker and the 100K Cheeks’ video made especially for the challenge. We’re seeking everything from compelling campaigns to donation experiences of any kind — and the broader we go, the more we’ll have to inspire us.

I can’t wait to see what you can come up with — and I can’t thank you enough, in advance, for your contributions for the better.

Mrs. Clean

2011-02-02T17:09:00.001-08:00

I come from a long line of women who are hyper-obsessive about cleaning (just ask my brothers and/or fiancé) — so I get excited about the very intimation of a housecleaner. Regardless, my sister* sent this along and I thought it was such an incredible cause that I had to share: cleaningforareason.org

If you know a woman currently undergoing chemotherapy in the United States, Cleaning for A Reason will provide free housecleaning (once a month for 4 months) while she is in treatment. I don’t know about you, but the one helpful thing someone can do for me when I’m sick is make my living space comfortable. I just feel better when my surroundings are organized and freshly cleaned.

Cleaning for A Reason serves the entire U.S. and currently has 547 partners. Check them out and pass their info along — think of how much it could help someone you know with enough on their plate already.

*thanks Shannon!

Made in Ohio: intestinal tissue

2011-01-23T11:12:00.000-08:00

My father showed me this incredible research about a month ago and I’ve been a slacker on sharing the news. It really is incredible...

James Wells, a developmental biologist at Cincinnati Children’s Hospital (Cincinnati, Ohio), has successfully grown stem cells into organ tissue — specifically, intestinal tissue. (left)

“This is really a major advance in the field because it provides an experimental system for studying the development of the human intestine,” says Steven Cohn, a gastroenterologist at the University of Virginia School of Medicine in Charlottesville. “This will allow one to study human organ development in the test tube in a way that we haven't been able to do before.”

As you can imagine, this could mean amazing things for research in Crohn’s disease and ulcerative colitis. More here: nature.com

(Thanks Dad!)

The war on arithmetic.

2011-01-17T08:09:00.000-08:00

I’m obviously a massive Thomas Friedman fan — and particularly loved his Op-Ed piece on health care reform (particularly) this week: “The War on Logic”

Damaging your DNA.

2010-12-09T21:40:00.000-08:00

You already know that I am ferociously anti-smoking, but if this doesn’t change your mind about even that one cigarette you might consider having, I don’t know what will. Take a look: “Just One Cigarette Can Harm DNA”

Every exposure to tobacco, from occasional smoking or secondhand smoke, can damage DNA in ways that lead to cancer. “Tobacco smoke damages almost every organ in your body," says Surgeon General Regina Benjamin. In someone with underlying heart disease, she says, "One cigarette can cause a heart attack.”

About 40 million Americans smoke — 20% of adults and older teens. Tobacco kills more than 443,000 a year, says the 700-page report, written with contributions from 64 experts.

More here: BusinessWeek.com

Gorilla possibly has Crohn's.

2010-12-04T11:52:00.000-08:00

This made me cry. See the video here: necn.com

World Toilet Day.

2010-11-19T17:11:00.000-08:00

Today is World Toilet Day. Yep, that is an actual day, and why is it important? Well, if you’re reading this you likely have rather effortless access to the loo, but consider this: there are nearly 7 billion people on the planet, and 2.5 billion of them do not have access to a toilet. As someone with Crohn’s disease, this totally blows my mind and all I want to do is help change that latter number to zero billion!

So what the heck can you do about such a massive problem? You can start by helping out on this OpenIDEO challenge: How can we improve sanitation and better manage human waste in low-income urban communities?

Unilever and Water and Sanitation for the Urban Poor have teamed up withOpenIDEO to come up with sustainable sanitation concepts for poor urban areas like Kumasi, Ghana’s second-largest city.

Go on, give it a shot! And remember one of my favorite Emerson quotes (when I need to be reminded that even the smallest things can make a huge difference): “The creation of a thousand forests is from one acorn.”

1 out of 25,000.

2010-11-18T09:15:00.001-08:00

With an orphan disease like Wegener’s, no one (in my daily life outside of the hospital walls) ever seems to understand what the condition is really like or how it manifests itself.

This may be my most boring post yet, but I thought this was one of the most straightforward and articulate descriptions of Wegener’s I’ve yet to see: merckmanuals.com

No more I, Me, My (or how compassion can make you a healthier person)

2010-11-01T10:54:00.000-07:00

I was lucky enough to see the Dalai Lama speak at Stanford a few weeks ago (thanks Linda!) and while I expected it to be enlightening, I had no idea it would have me thinking about my everyday language.*

He talked about the centrality of compassion in human life and society which pretty much boils down to: be kind and compassionate toward others and you will be a complete and happy person. Pretty simple, right? Yep. Got it.

What I found even more fascinating is the work — which he referenced throughout his talk — being done at the Center for Compassion and Altruism Research and Education (CCARE) at Stanford. CCARE studies the effects of altruism on people via neurology, science, physics, medicine, etc. and recently received the largest donation from the Dalai Lama ever given to a non-Buddhist organization. Here’s a quick, but intriguing snippet as to how he became so involved in the center’s work:

...scientific research has shown that constant fear and hatred are eating away our immune system while individuals who are calm and compassionate sometimes even show an increase in their positive body elements.

His Holiness recalled attending a conference at which a paper was presented in which it was stated that people who continued to stress on “I”, “me” or “my” had greater risk of heart attack.

If that isn’t one more compelling reason to be compassionate, I don’t know what is. Here’s to more “we”, “theirs” and “ours” in your everyday discourse. Cheers!

*Watch the video here: dalailama.stanford.edu/webcast

Photo by Bruce Bortin / Creative Commons

Let's get physical.

2010-10-15T13:34:00.000-07:00

I just started reading Dr. Abraham Verghese’s book Cutting for Stone and loved this article about him so much I had to share: “Physician Revives a Dying art: The Physical” (thank you Kate and Kezya!)

Dr. V preaches the art of the physical as a simple and effective way of diagnosing some of the most obvious afflictions the human body may suffer. “It would be a shame to have someone with a gait that’s diagnostic, and yet we can’t recognize it.”

My favorite part of the piece? He has the (my) ideal situation for working 2-days a week: Two days a week he hides out to write, in a secret office that was part of the deal he made when Stanford recruited him. His name is not even on the door; he left the names of the previous occupants. There is no land line.

Love it. More here: nytimes.com/health