Ola Kino Maika'i.

(that means “good health” in Hawaiian)

What is up Chronic Stylers? Apologies for the delay in posts, but I’ve been in Hawaii for the last week. Look for some good content starting tomorrow.

For now, I’ll just leave you with the super cool poster from the Gidget Pro and my congrats to Carissa Moore who has grown up so fast. I feel like I was just reading about her when she was 12. Man I am old.

Top websites for your chronic illness?

Hello Chronic Stylers! I’m compiling a list of the most helpful websites for managing, researching, exploring, debating, and whatever-ing your chronic illness.

Got some ideas for me? Let me know and I will, of course, share the list with everyone along with summaries for each site (drop me a line or add your comments below).

To start, here are my favorites:
_wellsphere.com = the largest network of health writers (patients, experts, doctors and more) on the web — “health knowledge made personal”
_CCFA = the Crohn’s and Colitis Foundation of America’s site
_vasculitisfoundation.org = the Vasculitis Foundation’s site for patients, family members and medical professionals in learning about vasculitis
_nytimes.com/health, particularly Patient Voices, and anything by Tara Parker-Pope
_medstory.com = focused and real medical search results (more about that site here chronicstyle.com/search-for-captain-research)
_health.nih.gov = the National Institutes of Health’s site for information about trials, risks, studies, grants, diet, and more
_mayoclinic.com = more than 3,300 physicians, scientists and researchers from Mayo Clinic sharing their health expertise

The real Superman.

Check out this 2-part video* about David Garrard, the quarterback for the Jacksonville Jaguars who truly is the man made of steel. Diagnosed with Crohn’s disease in 2004, this guy talks about having a bowel resection like it was his morning jog. “Let’s just get this done.”

For the second year in a row Garrard is teaming up with Centocor Ortho Biotech (the makers of Remicade) who will donate $10,000 to the CCFA for every rushing or passing touchdown he makes this season. (Last season he raised $170,000!)

I may just have to start watching pro-football now...my dad will be so proud!

*Fair warning about the cheesy music.

Being an informed and patient patient.

(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.

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...

...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...

...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.

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.

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.

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.

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.

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.

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.

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/krisjas-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.

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