Chronic Style

Being an informed and patient patient.

2009-11-15T23:11:00.000-08:00

(not to be confused with becoming a patient patient)

I’m inherently an optimistic person, but when someone honks their horn the split second a light changes to green from red or nearly knocks me off the bus that I too am trying to exit, I have to admit that I start to lose my patience, not to mention my auspicious disposition.

Similarly, I feel like the H1N1 vaccination process has made a majority of Americans, or rather the media, completely cuckoo for Cocoa Puffs. That said, I have a few quick points to make.

First: be patient
Vaccinations take time to create. Why? It’s complicated, but I like to compare it to making bread from scratch—you can’t rush the process. Dough needs time to rise in the same way that eggs need time to hatch. This medical blog explains the process pretty well: scienceblogs.com/effectmeasure

Second: be informed
This vaccine has been through the same routine FDA procedures that all vaccines withstand. Really? Yes. More here: flu.gov /myths

Last: if you are getting the vaccine, get the correct one
It’s really a personal choice whether you get the H1N1 vaccine—I’ll be getting it and I already had the regular/seasonal flu shot. But if like me you are on anti-TNF therapy (like Remicade, Humira, Cimzia, etc.) make sure and get the shot and not the live virus (which is taken through the nose).

Good luck! And wash your hands already!

Driven to steal.

2009-11-13T10:43:00.000-08:00

Wow. I was floored (not to mention deeply saddened) by this story in the Sun Post-Herald police blotter: “Woman says she stole items to pay for Crohn's medication”

Ummm, yea. I would call that a pretty fair sign that our healthcare system needs a bit of reform, but what do I know?

The greatest health care system in the world...

2009-11-09T21:39:00.000-08:00

...is definitely not here in the United States, but with reform, it could be. Check out yet another brilliant op-ed by Nicholas Kristof from last week.

The United States ranks 31st in life expectancy (tied with Kuwait and Chile), according to the latest World Health Organization figures. We rank 37th in infant mortality (partly because of many premature births) and 34th in maternal mortality. A child in the United States is two-and-a-half times as likely to die by age 5 as in Singapore or Sweden, and an American woman is 11 times as likely to die in childbirth as a woman in Ireland.

(Thanks again Bill!)

It’s not perfect, but it’s a start...

2009-11-07T22:05:00.001-08:00

...and I totally commend it. Well done.

“Our plan is not perfect, but it is a good start toward providing affordable health care to all Americans,” said Representative Peter A. DeFazio, Democrat of Oregon.

Read the story here = Sweeping Health Care Plan Passes House

Up with the support, down with the C's.

2009-11-02T22:29:00.000-08:00

This afternoon I was fortunate enough to teleconference in and join the Down with the C’s group—Orlando, Florida’s very own Crohn’s and colitis support community. Because we’re on opposite coasts I was still at work when the group met and shortly after our chat, I put on my running shoes and went for a jog. (It’s getting dark early now, so there isn’t much time left after 4pm to get that last daylight run in!)

Someone asked me toward the end of our talk if I was currently on any meds for Crohn’s disease and if I’d ever had surgery. My natural response was “Yes, I’m on a drug called Cimzia, and no, I’ve had no surgeries. I’ve been very lucky.” I was obviously not thinking, of course, of the 3 surgeries I’ve had in no less than 6 years—they weren’t Crohn’s related, so I didn’t even bother to mention them.*

Anyway, I’d mentioned to the group the idea of setting up a Google Alert to catch all the latest news about Crohn’s and colitis—something I highly recommend—and here is the link to make that happen: google.com/alerts

Thanks for having me guys and keep up the great work!

*No big insight here, I just thought it was of interest that I’d so easily dismissed such a traumatic series of events in an effort to relate my true experience (because they weren’t for Crohn’s-related issues).

Foods that fight.

2009-11-01T00:00:00.000-07:00

The hospital I practically lived in the summer before last—Florida Hospital—emails me this short and sweet health e-newsletter every so often. It’s incredibly resourceful and I had to share a study finding in their most recent edition that absolutely floored me: the American Institute for Cancer Research found that 30 to 40% of cancers are directly linked to dietary choices. Pretty nuts, huh?

So what should you be eating? Exactly what Mr. Pollan told us: “Eat food.* Mostly plants. Not too much.”

What exactly? Quite a few of these foods: 3 Foods That Reduce Cancer Risk

Cheers!

*That means real food, not processed junk.

Photo ©McCun934.

The unveiling.

2009-10-29T09:15:00.000-07:00

And here we go: Pelosi Unveils Health Care Bill

“House Democratic leaders, citing cost analysis by the Congressional Budget Office, said the bill would reduce future federal deficits by about $30 billion over the next 10 years, meeting President Obama’s demand that the health legislation not add ‘one dime’ to the nation’s indebtedness.”

Hallelujah. And that’s all I’m saying until it passes to avoid jinxing it.

Celebrities get swined.

2009-10-28T23:15:00.000-07:00

Say it ain’t so LeBron. In honor of my stricken colleagues and the hottest health topic behind the health care debate, I present ABC’s “Celebrities with Swine Flu” gallery: abcnews.com/swineflunews

They saved the best for last, for sure.

(Image by Keith Allison.)

The skin cancer link.

2009-10-27T22:59:00.000-07:00

Saw this pop-up in my Google alerts and was not surprised at all to read it (warning, if medical photos disgust you in any way, do not click this link): medpagetoday.com

Yikes. Guess I can’t blame my 7-hour Mohs surgery on surfing and lifeguarding anymore. More here: health.msn.com and here: attorneyatlaw.com

Ha ha healthcare.

2009-10-23T22:47:00.000-07:00

Love this. U.S. News has compiled that best editorial cartoons on the healthcare debate: usnews.com/galleries

Some are so good, they’re tragic.

Surviving cancer, but not healthcare.

2009-10-20T22:38:00.000-07:00

Check out Krisja Hendricks’ story on Rock The Vote.com.* At 22, while on her father’s medical insurance, Krisja survived a thyroid cancer diagnosis. A year later, unable to obtain coverage due to her pre-existing condition, she was diagnosed with Crohn’s disease.

“During my second flare up of Crohn’s Disease I had to move back home with my father because I could no longer work or take care of myself. This was because I had waited too long to start the medication needed to control the flare up. There was no generic brand of the steroid I was prescribed and one bottle that lasted a little over 2 weeks cost around $250 for self pay individuals like myself. All of this could have been prevented if I had had prescriptions covered and the proper care needed for such a degenerative disease.”

If Krisja’s struggles to obtain real medical insurance coverage don’t convince you of the changes needed in American healthcare, I’m not sure what will.

More here: rockthevote.com/krisja s-story
And here: reuters.com

*Rock the Vote is an organization whose mission is to engage and build the political power of young people, and I love their healthcare motto: “You will care when you need it and can’t get it.” (well put)

Great news in the fight against Wegener’s.

2009-10-17T22:08:00.000-07:00

With Wegener’s one of my greatest fears has always been having to someday be put on cyclophosphamide knowing that I would likely become infertile in addition to developing cancer later on. But this week, at the annual meeting of the American College of Rheumatology, the news was revealed that Rituxan can treat sever ANCA-associated vasculitis—such as Wegener’s—just as effectively as cytoxan (aka cyclophosphamide).

Previously used for the treatment of non-Hodgkin’s lymphoma and rheumatoid arthritis, Rituxan was found to be effective in a study across nine medical centers including 197 patients with Wegener’s granulomatosis and microscopic polyangitis. More here: eurekalert.com

A new set of toes.

2009-10-15T22:54:00.000-07:00

One of my brothers, who shall remain nameless, is cursed with my grandfather’s toenail fungus issues. In fact, his most common reply to his daughter’s question of “Daddy, guess what I got you?” is “A new set of toes?” It always makes me laugh.

As a swimmer from a young age on, I was the victim of many an athlete’s foot attack which, upon reflection and next to my brother’s story, makes me wonder if some of us aren’t predisposed to getting nasty foot fungal attacks. That and the fact that we all keep running long road-races and beating our feet up—see The New York Times for a short piece on the nameless brother’s running style.

Regardless, it’s interesting to know that the same ingredient used to naturally kill germs in Cleanwell’s line of products—thyme—is also being used to treat onychomycosis. This may not be a big deal to those of you with perfect nails, but the leading treatment for nail fungus Lamisil has a know side effect on your liver. Personally? I’d rather just rub some thyme on my toes.

Want to know more? Read on: Thyme for your toenails

Dale Carnegie was right...

2009-10-13T23:56:00.000-07:00

...when he said, “Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.”

With that in mind, I point you to one of Dr. Geoff’s posts from July, just to remind us all why this fight is so important to continue: Why do we need healthcare reform? He does a great job of rationally explaining healthcare reform in a laconic style.

Also, check out his more recent summary of why those who currently have health insurance should speak louder for reform than those without (even if it appears that the public option won’t make it into the current bill): Healthcare reform for the uninsured

Conmemorar.

2009-10-12T00:00:00.000-07:00

I am of the belief that is very healthy and good to remember those who have passed, particularly long before their time. September and October bring to mind the loss of a few friends whose presence would absolutely make this world a better place.

One in particular—Joe Milligan—is someone I think of often (partly because Geoff reminds me so much of you, Joe). And inevitably some crazy swell always stirs up around the time of Joe’s passing. Here’s to remembering those who continue to inspire us, no matter the tragedy.

“Let Congress Go Without Insurance”

2009-10-08T11:22:00.000-07:00

Love it. Nothing more to say except read it: nytimes.com/op-ed

(and thanks for sending me the link Bill!)

And that’s a wrap.

2009-10-07T22:39:00.000-07:00

It has been a busy couple of days at Health 2.0, but we’ve come to an end and I have a lot of summarizing to do! Look for reflections and inspirations taken directly from the conference over the next few weeks.

Let’s begin the reflecting and inspiring with Dave deBronkhart or as he is better known to the world—e-Patient Dave. Dave beat stage IV (!) kidney cancer in 2007 and since has told his story near and far, testified in the capitol on behalf of patients’ data rights, and had quite an interesting experience transferring his health records into Google Health (it was entirely the fault of the hospital, not Google).

Dave replied to a comment today on his blog and said something so profoundly simple and perfect about healthcare, I just had to share.

Someone asked, referring to the healthcare debate and access to care, “How do we move this forward?”

Dave replied, “I think a first step is to have a clear vision of current reality. If we become aware of the human impact and suffering that comes from our situation, we'll be better empowered to use our creative energies.”

The more we share our stories of healthcare (good and bad), the more the human impact will overcome the naysayers who want everything to remain the same. And if you need some evidence of just how truthful this all is, check out Dave’s post from today: To Have, And Have Not, part 2

Watch Health 2.0 live!

2009-10-07T10:37:00.000-07:00

Hello from sunny San Francisco! It’s already been a great morning full of insight, discussion, and debate here at Health 2.0. Feel like you’re missing out? Watch it all live here: justin.tv/health2con

Don’t miss Arna Ionescu’s announcement of the winner of the Human Centered Design Contest hosted by IDEO around noon.

(above, Roy Schoenberg, CEO, American Well—if only all CEO’s could look errrr speak this well.)

Top ten best things at Health 2.0 (so far)

2009-10-06T22:18:00.000-07:00

10. Finding out about Frontline SMS: free, open source software that turns a laptop and a mobile phone into a central communications hub.
9. And subsequently a place to donate your old mobile phone for an incredible cause: Hope Phones
8. Getting water canteens at check-in rather than plastic water bottles. Brilliant.
7. Hearing this Thomas Jefferson quote in reference to educating the masses about healthcare: “Educate and inform the whole mass of the people. Enable them to see that it is their interest...”
6. The heated discussion during the patient is in hosted by Amy Tenderich from DiabetesMine.
5. The IDEO human-centered design contest presentations (yea, I’m definitely biased)
4. Al Waxman telling us that our doctor does not love us
3. Hearing from Aneesh Chopra
2. Ron Dixon talking about “care that makes sense.”
1. Maggie Mahar referencing hospital stays, “Go to the hospital with someone you love, preferably an attorney.”

Also, all of the demos were great, don’t want to forget them, but a “top eleven” seemed weird.

Welcome to Health 2.0!

2009-10-06T09:31:00.000-07:00

Good morning! It’s only 9:30am and we’re already off to a great start. After a brief intro to the next few days from Matthew Holt and Indu Subaiya, we heard from Aneesh Chopra, Chief Technology Officer (CTO) for the U.S. government.

The gist of Chopra’s talk? A call to action for the health community. He wants to hear from health practitioners, patients, entrepreneurs, etc.—the frontline. “What data sets would you like to get your hands on? Help me to move the ball forward.”

More about his health IT standards committee to come. The wi-fi here is (ironically) very spotty.

Health 2.0: a (continued) preview of what’s to come this week

2009-10-05T21:45:00.000-07:00

Tomorrow we’ll hear from Michael Millenson, author of Demanding Medical Excellence, as he moderates a panel on how Health 2.0 can (I’m an optimist) make healthcare more affordable. Michael will host the discussion between Al Waxman, Luke Mitchell, and Maggie Mahar.

I’m particularly interested to hear Luke’s thoughts after reading his incredibly insightful article back in February: Sick in the head: Why America won’t get the health-care system it needs

More tomorrow! See you all in the morning...

Health 2.0: a preview of what’s to come this week

2009-10-04T00:15:00.000-07:00

I am honored to be blogging on behalf of Wellsphere’s HealthBlogger Network at Health 2.0 this year in my beautiful city of San Francisco. So rest up people! We’ve got a lot to cover in just two jam-packed days.

The theme for this year’s conference is “user-generated healthcare” which means a sneak peek at the latest next generation tools in doctor-patient interaction, a human-centered design challenge judged by some clever IDEOers, and a keynote address from Obama’s own Aneesh Chopra...and that’s just the first day!

Check out the agenda here and stay tuned for more on what to expect at this year’s Health 2.0 conference.

Pssst! Let me know if there is any part of the conference your are particularly interested in learning more about.

Who can’t use an extra advocate?

2009-10-02T22:55:00.000-07:00

I just learned about the Crohn’sAdvocate Program today and it’s no coincidence that it is sponsored by the makers of my current drug (which, in a way, makes me like it more). UCB actually hired several brand advocates, all people with Crohn’s disease, to speak on behalf of their illness in conjunction with the launch of Cimzia injectable. Brilliant, right? I thought so too.

“The Crohn’sAdvocate Program was designed to connect, educate and empower those living with Crohn's disease. With a patient-focused attitude, the program highlights the stories and experiences of people battling Crohn’s.”

If you haven’t already, check out their site and register for a free Crohn’sAdvocate mag, plus find local Crohn’s related events in your area.

An ostentatious ostomy.

2009-10-01T14:43:00.001-07:00

Wow. Talk about a provocation. Jessica Grossman is getting rid of the social stigma of living life with (an) ostomy, an unfortunate reality for so many people with Crohn’s and colitis. Check out her site—Uncover Ostomy—an awareness campaign that is shaping a positive conversation about the ostomy.

More from Jessica here too: youtube.com
And don’t miss her blog either: uncoverostomy.com/blog

Like water for health.

2009-09-28T15:00:00.000-07:00

In an area where water bills run high, vulnerable parties — like those with Crohn’s disease — are seeking assistance for their extra H2O costs. More here: BBC.com/news