Jobless health coverage.

If you were a mind reader—or maybe just a close friend—you would know that one of my main worries (especially now) is the thought of losing my healthcare. It’s a valid concern given the state of the U.S. economy right now or as Lesley Aldermann calls it “the one-two-punch.”

“You lose your job. Then you have to pay thousands of dollars out-of-pocket for the health insurance an employer no longer provides,” says Aldermann.

So what can you do? First, read this article: Advice to the Jobless on Getting Health Coverage

Next, here’s a great list of resources with regards to understanding your insurance options: familiesusa.org and nytimes.com/health/policy

Last, do what my boss says and light a candle. (Hey, it can’t hurt!)

The highest price in the world is free.

Or at least that’s what my father always told me. So you can imagine this caught my eye: “Free Genetic Testing” (thanks Geoff!)

The Coriell Personalized Medicine Collaborative is conducting a study to determine whether or not “personalized genetic information can be used to improve people’s health.” And it’s free. You just need to be over 18 and live near Camden, NJ. Oh and you will only receive information about their findings if you have at least one of the following conditions/diseases/problems: age-related macular degeneration, colon cancer, coronary artery disease, inflammatory bowel disease, hemochromatosis, type 1 or 2 diabetes, melanoma, obesity, or prostate cancer.

More about the study here: How It Works (this diagram was actually my favorite part of the whole site)

A grant that may kill a common killer.

I was once misdiagnosed with pneumonia and soon after tried to become the “amateur-authority” on fluid in the lungs. After not too much research I was surprised to learn that pneumonia is the largest killer of children in the world (two million a year—beating out measles, AIDS, and malaria combined).

Last week the Bill and Melinda Gates Foundation gave the John Hopkins School of Public Health $40 million to pay for laboratories in five developing countries to screen children with pneumonia and figure out the root causes of their disease. (How great is that?)

“The labs will employ techniques not yet in use in poor countries: inflating children’s lungs with mist to get deep sputum samples, and using a technology called MassTag PCR that screens for pathogens.” —Donald G. McNeil Jr., The New York Times

More here: asph.org and here: nytimes.com

Another reason to smother the smoke.

We all know how I feel about smoking and just in case you needed a little more fuel for your quitting fire, check out this bit of research: “Smoking exacerbates progress of Crohn’s disease”

“Smokers, who contract Crohn’s disease, must undergo surgery and suffer the dangerous advanced stages of the disease more commonly than non-smokers.” —Goethe University

More here = monstersandcritics.com

A post for Hollywood’s favorite doctors.

I figured I had to make a special Academy Awards weekend post when I saw this blog topic on wsj.com: It’s Oscar Weekend. Who Are Your Favorite Movie Doctors?

I think Michael J. Fox was definitely my all-time favorite.

Formerly known as healthy.

A few years back I lost one of my best friends and the loss of that friendship has affected me in ways I could have never imagined.

I’ve been thinking about loss a lot lately, particularly as I sat in yet another doctor’s office this week, with yet another bad prognosis. I realized—9 years into this experience—that I’ve lost the ability to ever be a truly healthy person again. I know how depressing that must sound, but I feel as if this must be a very natural progression for many people diagnosed with a chronic illness to go through.

I’m not quite sure where I’m going with this, but perhaps one loss is not that different than another. I googled “loss + chronic illness” and found hundreds of intriguing results in fact. Just a thought. Happy weekend all.

The picture of health (in the drug industry).

Fueled by their massive investment and sales in heart stents—Abbott labs, also the maker of Humira (my personal godsend), continues to succeed in an extremely competitive drug industry. Here’s an interesting about why: Abbott Labs: A Prescription for Success

Chronic illness in the workplace and more.

This is one of the best pieces I’ve seen in a while about the difficulties—particularly for women—of managing a career while simultaneously managing a chronic illness: Ill in a day’s work

I could sum it up for you, but this introductory quote seems to do a pretty great job of that: “When a woman is diagnosed with a chronic disease like cancer, M.S. or lupus, she is often at the peak of her earning power and productivity. How do you choose between your livelihood and your life?”

More here: more.com

Got Crohn’s and ten minutes?

A Canadian research student named Joshua Paulton is working on a study about Crohn’s disease and has posted a survey here: surveymonkey.com/crohnspsychology

It took me approximately 10-minutes to complete and is entirely anonymous. The study is based in Langley, BC, Canada and involves Crohn’s sufferers with both active and remission conditions. (Participation is open to everyone with a formal medical diagnosis of having Crohn's Disease.)

Check it out and please forward on to your fellow Crohn’s people. Happy Sunday. Will it ever stop raining in San Francisco?

Love life.

Thought that was a good title for a V-day post. Check out this story about Michael Noble—an incredibly brave young man with Wegener’s granulomatosis: Teen's dreams sidelined by kidney disease

Noble, who is only 19, is seeking a kidney donor since no one in his family is eligible. More info about kidney donation can be found here: kidney.org

Game on.

Recently diagnosed with Crohn’s disease, Richard Moore—a 27-year-old rugby player for the Wakefield Wildcats in the UK—will play on once he has begun treatment. Good luck Richard!

More here = independent.co.uk. And I had forgotten this since I lived in Australia, I really like how the Commonwealth nations refer to your small & large intestine as your “gut.”

No pain, no Medicare.

Colonoscopies might be the most boring topic in the universe to you, but trust me once you’ve had one (or many) you will do everything within the realm of possibility to avoid that experience again, mainly because the preparation is just...so...awful.

Perhaps that’s why when I first heard about the possibility of someday getting a virtual colonoscopy, I was overjoyed. Elated. I couldn’t contain myself. The idea of have a CT scan or an MRI-type experience as opposed to the traditional “scopy” sounds like heaven to me. In light of that, I recently read that the Centers for Medicare and Medicaid Services have decided there is “insufficient evidence” to conclude that a virtual colonoscopy “improves outcomes in Medicare beneficiaries.”

Only 61% of adults 50 and older even bother getting colonoscopies — and I have to believe that’s directly related to the horrid experience of it all. I wonder if Medicaid/care ever took that into account when they decided to axe virtual colonoscopies as a backup for the invasive version. Additionally, I found a lot about the accuracy of virtual colonscopies, but what do I know.

No pregnant pauses.

Read this short and delightfully promising story about Jennifer Adler—a Crohn’s disease sufferer who is maintaining a healthy pregnancy.

“The majority of women who have Crohn’s Disease can get pregnant with out undue risk to themselves or the baby,” says Dr. William Tremaine of the Mayo Clinic. “The rule of thumb is to try to get the disease under as good of control as possible, to get the disease in remission, before proceeding with the pregnancy.”

More here = kaaltv.com

The 4th Congress of the European Crohn's and Colitis Organization (ECCO-IBD) met this past week in Hamburg. Of all the info presented, I found this study really interesting as I was one of the 40% of Crohn’s patients that quit responding to infliximab (Remicade) after a few years. Actually, I anaphylaxed to it—in Charles de Gaulle and ended up in a shady French hospital for 2 days—but that’s a whole other story.

Anyway. I was stoked to hear that a lot of patients who were no longer responding to Remicade are finding success with certolizumab pegol, better known as Cimzia. More on the study here = doguide.com

Industrious aging.

This is something I think about every time I notice how quickly Obama’s hair is getting gray. Check out this article on USNews.com = “Why Your Job Could Be Making You Old”

Like you needed a reason for taking a deep breath or hopping on that early train home for the night. And here's another interesting one = “How Fast Will the Presidency Age Obama?”

Vitalogy.

This past Thursday, Pearl Jam’s Mike McCready left his guitar at home to lobby for the rights of people with Crohn’s disease. He asked Washington state lawmakers to mandate emergency access to private restrooms for sufferers of both Crohn’s and related disorders.

“The proposal would require retailers without public restrooms to allow people with inflammatory bowel diseases to use employee restrooms, provided an identification card or a letter from a doctor or nurse is shown...if the bill becomes law, those who refuse to open up their restrooms to qualified people could eventually be fined $100.” —Brian Slodysko, Associated Press

Three other states—Illinois, Michigan and Texas—have passed similar laws already. Here’s the really interesting part—there is a lobbyist from the Washington Restaurant Association who is against this law and cites the safety of employees in kitchens as the reason. I had to laugh when I read this envisioning hundreds of Crohn’s disease sufferers running through busy and crowded kitchens, taking out anyone in our paths—doctors note in hand—to get to the oh-so-common “private employee bathrooms.”

I’m hoping McCready goes Seattle-punk-rock on this guy if they ever meet—but then again, I’ll be too busy endangering the lives of restaurant employees according to Michael Transue.

More on the legislature here: leg.wa.gov and the article here: seattlepi.com

(Thanks for telling me about this John!)

“I’m here to support me. Thanks.”

I had this funny moment in the waiting room of the pulmonary function lab yesterday that I just wanted to share.

I was waiting behind a woman who was 35 years my senior (I know this for certain because I heard her birth year announced) when the receptionist looked at me and additionally stated aloud, “Ohhh. That is so nice of you to come and support your grandmother!”

Hmmph. Not only was that not my grandmother, but I had been waiting in line for over 25 minutes while she and grandma debated what “Medicare B” truly meant by repeating serial numbers back and forth to each other. This also meant I was now 10 minutes into my actual appointment time. My knee jerk reaction was to say, “I’m here to support me. Thanks.” Instead I just smiled and said I was there for my 2.30pm appointment (that I’d arrive 20 minutes early for anticipating this very situation).

Nothing makes you feel like you are in for yet another fun medical experience like the hospital clerk/nurse not knowing who you are or why you’re there. And while I watched patients move in and out of the ICU next door to the lab, I couldn’t help but wonder if I would do my job with a bit less assumption and more acumen if I knew I was constantly dealing with very sick people.

Would I be better about it? Or would I just grow numb to it after a while? I’m not actually sure. It’s hard for me to even remember that not everyone is a Democrat until I go back to my hometown. Just my thought for the day. Here’s to assuming less often—right Linda?

TeleHealthiness.

It’s still in its trial stages, but AT&T has developed a software tool and networking platform that uses wireless devices to record a patient’s health measurements at home. Cisco (left) just launched one too. Pretty cool, huh?

Reminds me a lot of the Health Hero Network’s Health Buddy and a few other passes that Novartis and GE have taken at telemedicine technology.

More here: fastcompany.com and here: cisco.com

“Living with...”

I found this really cool feature on the The Washington Post’s website: Living With...An occasional feature in which readers write about living with chronic illness

This first in entry in particular is about living with Crohn’s disease, and Angela Carlson puts it all into quite an interesting and honest perspective. More here: washingtonpost.com

Psssst! You can submit your own writing to The Washington Post’s “Living With...” section so get writing Chronic Stylers (!) and submit your work here = health@washpost.com. (Include your postal address and phone number and mark the subject line “Living With.” No more than 250 words, please.)