Closer to a deal.

It’s no beer summit, but we’re getting there. Chairman Henry Waxmen said today that he had reached an agreement with other Democrats “that would allow the panel to approve sweeping health legislation later in the day.”

I know there is a vast amount of disagreement when it comes to government subsidized healthcare in the US—and I welcome your opinions, concerns, etc. If I may, to give everyone some perspective in these times of economic woe—imagine having a chronic illness out of no fault of your own, losing your job, and facing the prospect of no healthcare whatsoever. I often wonder if the naysayers think about that aspect of life as an American.

I had some Canadian visitors last week and spoke with a few of them at length about this problem. My friend John pointed out, after his trip to Alcatraz, that even prisoners are given medical care as one of their four basic rights as human beings. Food for thought, for what it’s worth.

Cast your cause.

I learned a lot from my recent film premiere production and man do I wish I had known about these guys before: causecast.org

This “one stop philathropy shop” is just the thing you need to connect all the right people with all the right causes. With CauseCast’s help you can: donate directly to nonprofits, receive customized news, blog and video feeds, connect with leaders and celebrities, find volunteer opportunities, learn about causes and organizations, spread the word and raise money, and get rewarded for participating

Check out the health page and get signed up already!

WeAreCrohns.org video about the RSD film premiere.

Rubberside Down Movie Screen in San Francisco from WeAreUs Corporation on Vimeo.

Well done and many thanks.

My apologies, it’s been such a busy weekend that I haven’t updated the blog much in a few days. The U.S. film premiere of Rubber Side Down went incredibly well and I can’t thank Clif Bar, Specialized, and Spaten enough.

People were just so stoked about the film and we even managed to raise some funds for CCFA in the process. The crew of Ben Morrison, Andy Peterson, Vin Hiney, and John & Michele Scott were a blast too. Greg, we missed you—more than you’ll ever know.

Thanks to everyone who showed up—and for those of you who couldn’t make it, you can order the DVD here = rubbersidedownmovie.com

Exceptional thanks to Tamara Block and Geoff Schwarten for all of their help too. You guys are amazing.

Pain in the a$$.

So not only is this guy awesome because he’s emceeing the U.S. film premiere of Rubber Side Down tonight—if you’re in the bay area, you cannot miss this—but he’s created his own Crohn’s related comedy show appropriately deemed “Pain In The Ass.” This is only one part of the show, but it’s a good starter, and hilarious. You can buy the DVD on Ben’s site here: benmorrison.org

Pain In The Ass is the funniest one-man-show about severe intestinal disease, ever. Diagnosed with Crohn's Disease in high-school, Ben Morrison didn't get angry, he got writing, and this is his tail.

Check it out and I’ll see all of you San Francisco locals tonight at the Clif Bar theater!

Cancer as chronic illness.

I’ll never forget when an oncologist at Stanford explained the doctrine of treating cancer as a chronic illness. It massively changed the way I thought about treatment regimens for every disease. It was only a matter of time before the rest of the world caught on: Considering Longer Chemotherapy*

*My greatest concern is that while long term treatment might be more effective, it is an emotional burden many are not prepared for. More on that soon.

Moving mountains.

Talk about noble, Canadian musician Jimmy Mackenzie, 25, will attempt to summit Mt. Kilimanjaro this September. Why? “I was in the hospital staring at the walls too long, I guess. They (the IWK health centre) gave me my health back and I’m so grateful to get a chance to test myself. It’s a natural challenge, climbing a mountain.”

Good on ya Jimmy and bonne chance. Read the full story here: thechronicleherald.ca

A map of your money.

Talk about transparent—check out this cool site (thanks Julie!) of exactly were all of the 2009 NIH stimulus grants have gone thus far = report.nih.gov/recovery

This part is super intriguing (spending by category) = report.nih.gov/rcdc/categories

Humira, I hardly knew ya.

Plagued with allergic reactions and a grand finale of skin cancer, yesterday marked the beginning of my final adventure into the land of TNF-Alpha inhibitors. Good bye Remicade, adios Humira, hello Cimzia. And if Cimzia doesn’t like me — or vice-versa — I’m out, and the world of anti-TNF therapy is not for me. After all what doesn’t kill you — almost killed you! (Or me, in this case. Literally, like I almost suffocated in my own hives.* Yikes.)

Enough pessimism though, I have read and heard great things about Cimzia, and must say that as a designer I am almost more excited about the user experience and packaging than the actual drug. Speaking of which, there is a great review about it and the history of injection devices on Core77.

Fingers crossed that this will work. So far, so good. I’m ready to say good bye to the prednisone any day now...

*And now the ER bills are slowly killing me.

Patient voices: Lupus

A dear friend of mine—and prednisone buddy—has lived with Lupus for most of her life. I’ve always been curious about the disease as it seems similar enough to Crohn’s disease in it’s manifestations and it’s treatment regimen. Check out the New York Times incredible audio slideshow about Lupus: Patient Voices

Guts.

I think about mine all the time, but maybe Adam Starr is right and it’s time to start thinking about someone else’s organs for a change. Check out his post on GOOD magazine’s site—The Offal Truth—about Chris Cosentino, an extraordinary chef who is redefining American delicacy.

Also check out this super cool seasonal food chart on GOOD. Apparently, we can eat rutabaga all year long without guilt. Yay.

Starlight, starbright.

One of my greatest fears is that one of my nieces, nephews, or hypothetical future children will have to deal with Crohn’s, Wegener’s, or something similar. I cannot begin to imagine having to deal with this at a young age—it was enough to go through the initial diagnosis and pain as a young adult.

Enter the Starlight Children’s Foundation and their latest project UCandCrohns.org. Starlight’s mission is “to bring together experts from pediatric health care, technology and entertainment to create programs that educate, entertain and inspire seriously ill children.” UCandCrohns.org does just that by providing resources, showing true-life testimonials, and more.

Know a child with a chronic illness other than Crohn’s or ulcerative colitis? Have them sign up on Starlight’s chronically ill teen site here: starbrightworld.org

The winners, the losers, and the compromises.

Washington Post staff writers Shailagh Murray and Lori Montgomery have put together one of the better (and truly succinct) pieces on the bargains that must (soon) be made in health care reform legislation: On Health Care, The Prognosis Is Compromise

A must—and quick—read.

Fine print and the case for meaningful insurance.

My boyfriend and I often laugh that not a day goes by when I don’t receive a bill or statement from the hospital and/or insurance company. It’s actually not so funny though...

As a professional patient I am perpetually on top of everything that is billed, estimated, argued, and eventually charged. Ask any of my nearby co-workers and they’ll accede that I spend quite a majority of my lunch hours working with the phone between my ear and shoulder, awaiting an insurance case worker’s voice to question a statement or complex medical billing code.

But what if I weren’t so vigilant? Or worse yet, what if I weren’t prepared for the consequences of some of the charges? One of my meds costs almost $2000 per injection (!) and in spite of all my best efforts, I very often end up in the emergency room.

At least I know I’m not alone: Insured but Bankrupted by Health Crises

Feeling your age.

After all of the procedures and surgeries I’ve been through my answer to the question “How old are you?” is usually “130.” My mom always tells people that your age is how old you’d be if you didn’t know how old you were—to which I answer “130.”

Apparently, the older I get the younger I am going to feel: “How Old Do You Feel? It Depends On Your Age”

It's July and time to remind you again...

...that I’m hosting a film premiere of Rubber Side Down at the Clif Bar theater in Berkeley, California on Thursday, July 23. We’ve got great prizes and auction items from Specialized, a beer sponsorship from Spaten (wahoo!), and plenty of cool people attending.

Buy your tickets here—they’re selling fast. Cheers! Did I mention we got Spaten to sponsor? So excited...