Chronic Style

29,000 feet and climbing.

2009-12-20T18:38:00.000-08:00

Talk about hard core, I am officially never allowed to complain about how difficult elevated hiking is on my lungs. Cindy Abbott, a fellow Wegener’s sufferer, will soon be summiting Mount Everest as she strives to raise awareness for the disease and exemplify the importance of living life to its fullest—along with multiple other meritorious goals. Abbott is currently raising funds to travel to Antarctica to train with her guide on a measly 16,000 foot mountain called Mount Vinson.

Jeez. What a rockstar. Read more here: Los Angeles Woman Attempts to Climb Mount Everest and here: Lecturer Struck With Rare Disease

Incredible photo by Rupert Taylor-Price

I’ve got skillz.

2009-12-19T13:46:00.001-08:00

I don’t want to brag, but I, like most of my designer colleagues, have got some serious Photoshop skillz. Yep. With a Z. And rightly so—I’ve been using Adobe products since I was 12. That said, you’ll understand why this piece by Tara Parker-Pope was so interesting to me: Losing Weight by Photoshop

As someone who perpetually strives to be healthy and lean, it’s fascinating—like a train wreck—to see just how amazing cover girls look these days. And even I often forget that hours of time and the talents of multiple people go into making them appear so flawless. But I have nieces, young nieces, who are severely influenced by this so very not new problem, and that’s where my fascination turns into frustration.

Anyway, check out the article and the links in particular from Jezebel—totally engrossing.

An ambulance on tour?

2009-12-18T13:29:00.000-08:00

Yep. You heard that correctly. Check out this great (and short) piece about a group in North Dakota who is spreading the urgent message of healthcare reform in its most physical representation: an ambulance.

Read the article here: thedickonsonspress.com
Check out the organization here: facebook.com/changethatworksnd

Press Photo by Beth Wischmeyer

The Nation's Best Health Plans.

2009-12-15T21:23:00.000-08:00

Overwhelmed by what’s going on in Congress? Just want to pick a plan for the coming year? I totally understand, which is why I love this list that USNews & World Report has pulled together: America’s Best Health Plans

You can even refine your search and find out just where your current plan lies. Let’s just say that my plan would not be drafted for anyone’s fantasy football league.

Also, found this linked—an article with tips for buying health insurance online.

Is greed a preexisting condition?

2009-12-13T09:50:00.001-08:00

I think so. Love this piece by Steve Lopez. It’s not a new story per se, but it is a great look at how we may have to get ultra-personal to show the rest of the U.S. that the status quo on healthcare is frankly unacceptable.

Read here = “Fighting a preexisting condition: greed”

Quick and short health tips: Crohn's disease

2009-12-10T10:00:00.000-08:00

From US News & World Report on understanding Crohn’s disease = usnews.com/healthyday

20-years and still fighting hard.

2009-12-04T09:56:00.000-08:00

Great piece about Portland Pirates coach Kevin Dineen and his 20-year battle with Crohn’s disease.

“It's nothing to be embarrassed about. It put me in a role-model situation because it showed you could live, function and play a high level physical sport.”

Love it. More here: theforecaster.net

Ola Kino Maika'i.

2009-12-02T22:19:00.001-08:00

(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?

2009-11-22T15:51:00.000-08:00

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.

2009-11-18T00:47:00.000-08:00

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.

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.