Friday, July 29, 2011

The Microwave Knows

Even kitchen appliances have diabetes on the mind, it seems.

One evening, my CGM sensor died. Time to start a new one... But I didn't want to.

So, I procrastinated. Did whatever, and soon enough decided to have some some leftover coffee.

Grabbed a coffee cup from the cupboard and poured some cold coffee into it, then proceeded to heat up said cup of java in the microwave.

And that's when I saw it:


Yes, that IS a BluntLancet coffee mug.
Scrolling Microwave Message: "Sensor... Error."




















When heating up my coffee, in a BluntLancet mug displaying the "Error 5 - Not Enough Blood" message. Apparently, the microwave knew I needed to change my CGM sensor.

So it told me so with a message of its own: "Sensor Error."

I glared at it. "Who told YOU?!?!" I demanded.

The microwave didn't respond. A cold, judgmental staring contest ensued.

Slammed the microwave door shut, to teach it a lesson.

(sigh)

Diabetes is everywhere. Even the coffee cups and kitchen appliances think so.

There's no escape.

Wednesday, July 27, 2011

Media Missing The Point

Newspapers and "the media" makes mistakes all the time. Particularly when it comes to covering diabetes.

The most recent example can be found in one of my own local weekly newspapers, The Southside Times, and a columnist named Wendell Fowler. The Diabetes Community has responded in force to the original column July 15, the response column July 22, and publisher's letter. Everyone has pointed out how Fowler and the newspaper basically sacrificed accuracy to fuel a particular message. In doing so, the writer and publication dragged a local organization's name and reputation down and then failed to specifically apologize for that. Rather, both defended the premise of what had been originally been written and went on to blame the readers for "misunderstanding" the point - and went on to say it was all opinion and everyone is entitled to theirs.

No. I'm sorry. That's not what journalism is about. If you're a newspaper or media outlet it's your duty to make sure that accuracy, fairness, and balance are represented by everything - objective news content, editorials, or submitted opinion-writing. Because PEOPLE listen to that message, and aren't supposed to just assume to know what you mean.

In this case, the newspaper did try to achieve "balance" on its second-week response by running an entire column by a local man, who's not only a longtime Type 1 but is also a medical researcher in diabetes and is on the DYFI board of directors with me. There was balance here. But the fairness element required in journalism totally didn't exist here.

I've written my responses online and in personal communications to Wendell Fowler and the publisher, as well as others at the newspaper, but have yet to receive a response. Which is a travesty in itself, since Journalism 101 teaches entry-level reporters that the first thing you do is call someone back.

All of this has truly depressed me, not only as someone who lives with diabetes but also as a newspaper guy. This isn't the first myth-perpetuating media mistake that we've had to endure. It sadly won't be the last. But it's important for the community to respond to these issues, from local newspaper coverage like this, Chicago Tribune writing about some pseudo D-Civil War, to Oprah's ghastly on-air segment that totally got it wrong and then Ricki Lake's on air blunder (to which she specifically apologized for).

These things happen all too often, but we do our best to speak up and demand accountability.

I've heard some say recently, that it's pointless to try and raise a fuss about these media mishaps. In part because they'll keep happening regardless. Because we're just "feeding their egos" and bumping up page views, not changing any views on these "lost causes" who are going to think the same thing no matter what the response may be.

That bothers me. Mostly, because I'm a media guy. My view: We have voices, and it's important to use them. Otherwise, why even bother having those voices? I think it's important to speak up on these things.

As a reporter, I hate it when errors occur - from typos to misquotes to misinterpretations. Last thing I want to hear is that I got something wrong... but it happens. We're human and are bound to screw up. One thing to keep in mind, though, is that just because someone calls me up and says they believe something IS wrong, doesn't necessarily mean it IS wrong. That claim must be checked, as should everything in a story or column -> (Think: "Your mother says she loves you, well prove it."). But if a correction or clarification is needed, or even a written or in-person apology is needed, that's not something we should turn away from. After all, it's a matter of credibility.

Addition: I'm a member of the media. Newspaper reporter style. Someone who went to J-School and strongly believes in watchdog journalism that gets people what they need to know in order to have the ability to decide for themselves. As someone who's worked in the past for a weekly newspaper and a 6-day daily newspaper and am now several years into a twice-a-month speciality paper, I know the hurdles regular reporters face - always on deadline for Web and print, more phone calls, less time... Reporters just don't have the time to truly understand what they are writing about. That's not an excuse for crappy journalism, but it's an incredibly important reason we must understand for why our quality of journalism has failed on every possible topic - including diabetes. The public is fickle and doesn't have time, so they want it quick and now. And that (coupled with costs and revenue woes in the profession) creates this pressure system on our Fourth Estate. So, we need to help them. We need to find those local people who illustrate the numbers and the trends about diabetes. We need to give them notice, and follow-up even when the editors aren't convinced. We need to do our part as people who actually know WTFructose we're talking about.

Some area already having this discussion. Diabetes Advocates has also been talking about Diabetes Media Awareness, pondering how we could create a Patient-Created Fact Sheet to send to media outlets when the need surfaces. Or being pro-active about it, before any bad coverage comes out. There's also been talk about creating a Speaker's Bureau where some advocates can go out and specifically address this media awareness issue - that's something my local American Diabetes Association chapter for Indiana is doing and I'm excited to see what comes from that effort.

So, what do you think? What can we do individually or as a community to address these issues, and where's the line between advocacy and media awareness and just stomping our feet in a disgruntled way that doesn't really change anything? What do you do as far as media awareness on diabetes, and what works and doesn't work? How do you see the JDRF, ADA, local D-Camps, businesses/pharma fitting into all this?

Tuesday, July 26, 2011

An Important Anniversary

This is the 21st anniversary of the landmark civil rights law known as the Americans with Disabilities Act, which guarantees equal opportunity for those with disabilities in employment, public accommodations, transportation, commercial facilities, and telecommunications, and state and local government services. President George W. Bush signed this into law on July 26, 1990.

Borrowing the definition of "disability" from Section 504 of the Rehabilitation Act of 1973, the ADA aimed to stop employers from making employment decisions based on a person’s current, past, or perceived disability.

Diabetes traditionally fell under that umbrella of protection for nearly a decade, but sadly starting in about 1999 the Supreme Court of the United States dramatically scaled back the ADA definition to the point where it didn't protect certain individuals, such as those of us with diabetes. Basically, the Court ruled that someone could be considered too disabled by an employer to get a job, but not disabled enough by the courts to be protected by the ADA from discrimination - specifically because a particular condition can be controlled by medication or is in remission.

Suddenly, people with diabetes could be discriminated against at work but receive no protection as a direct result of their diabetes being a condition that can be controlled.

An amendment in 2008 brought that protection back for the Diabetes Community, as well as those living with other conditions such as epilepsy, cancer, cerebral palsy, multiple sclerosis, and other disabilities. 

These discriminatory acts of diabetes do happen, unfortunately, even with the ADA in place. Fortunately, we have advocates and attorneys like Kriss Halpern, who recently wrote an outstanding guest-blog over at Diabetes Mine - I encourage you to read that if you haven't, particularly given the anniversary we're marking now. 

Doing just that, the president is using his voice to recognize that anniversary and what the Act provides. He issued this on Monday:


Generations of Americans with disabilities have improved our country in countless ways. Refusing to accept the world as it was, they have torn down the barriers that prohibited them from fully realizing the American dream. Their tireless efforts led to the enactment of the Americans with Disabilities Act (ADA), one of the most comprehensive pieces of civil rights legislation in our Nation's history. On this day, we celebrate the 21st anniversary of the ADA and the progress we have made, and we reaffirm our commitment to ensure equal opportunity for all Americans.

Each day, people living with disabilities make immeasurable contributions to the diversity and vitality of our communities. Nearly one in five Americans lives with a disability. They are our family members and friends, neighbors and colleagues, and business and civic leaders. Since the passing of the ADA, persons with disabilities are leading fuller lives in neighborhoods that are more accessible and have greater access to new technologies. In our classrooms, young people with disabilities now enjoy the same educational opportunities as their peers and are gaining the tools necessary to reach their greatest potential.

Despite these advancements, there is more work to be done, and my Administration remains committed to ending all forms of discrimination and upholding the rights of Americans with disabilities. The Department of Justice continues to strengthen enforcement of the ADA by ensuring that persons with disabilities have access to community-based services that allow them to lead independent lives in the communities of their choosing. Under provisions of the Affordable Care Act, insurers will no longer be able to engage in the discriminatory practice of denying coverage based on pre-existing conditions, and Americans with disabilities will have greater control over their health care choices. And last year, I signed an Executive Order establishing the Federal Government as a model employer forindividuals with disabilities, placing a special focus onrecruitment and retention of public servants with disabilities across Federal agencies.

Through the ADA, America was the first country in the world to comprehensively declare equality for citizens with disabilities. To continue promoting these principles, we have joined in signing the Convention on the Rights of Persons with Disabilities. At its core, this Convention promotes equality. It seeks to ensure that persons with disabilities enjoy the same rights and opportunities as all people, and are able to lead their lives as do other individuals.

Eventual ratification of this Convention would represent another important step in our forty-plus years of protecting disability rights. It would offer us a platform to encourage other countries to join and implement the Convention. Broad implementation would mean greater protections and benefits abroad for millions of Americans with disabilities, including our veterans, who travel, conduct business, study, reside, or retire overseas. In encouraging other countries to join and implement the Convention, we also could help level the playing field to the benefit of American companies, who already meet high standards under United States domestic law. Improved disabilities standards abroad would also afford American businesses increased opportunities to export innovative products and technologies, stimulating job creation at home.

Equal access, equal opportunity, and the freedom to make of our lives what we will are principles upon which our Nation was founded, and they continue to guide our efforts to perfect our Union. Together, we can ensure our country is not deprived of the full talents and contributions of the approximately 54 million Americans living with disabilities, and we will move forward with the work of providing pathways to opportunity to all of our people.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim Tuesday, July 26, 2011, the Anniversary of the Americans with Disabilities Act. I encourage Americans across our Nation to celebrate the 21st anniversary of this civil rights law and the many contributions of individuals with disabilities.

IN WITNESS WHEREOF, I have hereunto set my hand this twenty-fifth day of July, in the year of our Lord two thousand eleven, and of the Independence of the United States of America the two hundred and thirty-sixth.

BARACK OBAMA

Monday, July 25, 2011

Focus on ME

A newsletter came in the mail the other day from our local county-owned hospital.

This is a place that I haven't been to in years, the last time being for a non- D emergency about five years ago. I saw an Endo affiliated with this hospital back when we'd first moved to Indiana in 2004, but that was only for a couple years and I later switched to a different Endo affiliated with a larger hospital outside of the county we live in, but closer to our home than where this county hospital is located.

But despite those changes, I continue to receive semi-regular mailings from the county hospital. I glance at most of them, flipping through and reading about whatever the local health-care topic may be. Then toss them in the recycling bin.

The latest newsletter for Summer 2011, called Focus on You, grabbed my attention immediately.


This wasn't tailored for me specifically, it was just a newsletter the hospital sends out to all those on the mailing list. But it did apply specifically to me, as it focused on diabetes right there on the cover.

So, I read it. Very remedial for longtime Type 1s, but nonetheless a good informative piece for those who might need it. Nothing wrong with it at all, and I was pleased to see it. AND, I learned something and took a couple things from it...

That little orange box on the cover caught my eye, stating: A recent study by the U.S. government found that many adult diabetics are not doing everything they can to prevent the long-term health consequences of diabetes." In the article, the writer says that study by the Agency for Healthcare Research and Quality (AHRQ) found that 58% of diabetics are missing at least one of three crucial tests: Hemoglobin A1c, Dilated Eye Exam, and Foot Exam. Now, I've not looked up this study or information to verify or learn more, but it seems on its face to a pretty reasonable finding.

That made me think about how I've been avoiding my Endo and having the latest A1c done, mostly because I know it's going to be higher and I know what needs to be done; I just haven't been motivated to stop slacking and get my management butt in gear. I had a dilated eye exam back in March, but didn't follow-up as the eye doc had wanted... So I need to do that too. Foot exams come with the Endo visit, and I've already addressed that...

The newsletter also mentioned how the National Institute of Diabetes and Digestive and Kidney Diseases also recommends regular tests on cholesterol levels, kidney function, and blood pressure. While the newsletter certainly didn't present any new mind-blowing information, it did include that tidbit of 58% of diabetics not doing what they should on the prevention front - and reminds me that as of now, I'm one of those slackers. So there's that.

Then, one of the columns inside the newsletter lists the upcoming classes and events - one of those is a Diabetes Support Group for PWDs, family and friends, that a local R.N. hosts. That could be just another way to take all the online D-Advocacy offline to another forum, and find some others locally to meet and talk to.

So, thank you local hospital I don't go to for anything anymore. Glad to be on your mailing list and get info like this. But mostly, thanks for getting good helpful info out there!

Friday, July 22, 2011

Enough Said

Totally don't care what the carb-count on this is...

It's damn hot outside, demonstrated by my recent Tweet on Thursday:

"Mental image of vanilla ice cream cone (from fair earlier in the week) melted into a messy puddle as I stepped outside into the 100+ degree heat. Total buzz killer."

So, stay cool. Enjoy some ice cream BECAUSE YOU CAN (assuming it hasn't melted in your hand or dish because of an extreme heat wave...)

Avoid those ice-cream haters and blamers.

Oh, and have a Happy Friday and good weekend. Peace out.

Wednesday, July 20, 2011

Hello, Larry, Well Hello, Larry...

Given that I've now completed my first decade of being an insulin pumper, I'm at a crossroads on what to do next.

Should I stay or should I go? Temporarily, that is.

Though I'm a fan of insulin pumping, it does take a toll on my mind and body. The signs are evident whenever I pull up my shirt and examine my stomach where I most often put my infusion sets. Last year, I took a several-month hiatus to give my mind and body a break and it did wonders. I wrote about it then, but I'll reiterate it again: In a way, this Pump Hiatus was "freeing" in the sense that I could walk around unconnected and unhassled and just do a shot whenever I might need to consume some carbs. Multiple Daily Injections worked well for me, and that period between March and September resulted in my A1C dropping by a whole % point!

It was pretty cool!

But don't get me wrong: I LOVE insulin pumping. The more detailed control. The D-Math it helps you with. The constant stream of insulin and flexibility in eating and life-living you have.

So, before embracing another break, I'm going to turn once again to Larry The Loaner CGM. You remember him? The Minimed 522 that I was able to borrow from a fellow PWD who is a pump rep in my area. Well, I have many sensors and reservoirs to use it, and I really want to get some use out of the CGM capability that my non-CGM 722 model doesn't offer and I'm not really up to purchasing/hassling insurance about at this point. Larry has been sitting in the house, waiting to return to the owner, but schedules just haven't permitted that.

But finally, we've settled in for another trial-run to get things back to where they should be before that next break. Trend watching and tweaking. "Control," even though I'm not the biggest fan of that term.

So far, it's been a solid experience for the past few days. Haven't actually gone above the 220s, which I don't recall the last time that happened. I've been so used to going high in the evenings thanks to non-accurate carb counting and dosage, that this feels pretty good.

Of course, nothing is perfect - and I say that knowing we're talking about CGM and Blood Meter Accuracy here. Other photos illustrate this problem perfectly:

Um... Stop lying to me, Larry. Totally not cool.


First, Larry starts vibrating to alert me of a Predicted Low.

However, a BG Test shows he's lying. Accuracy of my One Touch meter is not ensured, so we double-check... And get a 130.

Son of a...

"C'mon. What the...," I mumble.

A second check reveals a 162. Still doubtful and now annoyed by this lack of accuracy, I test again and on this third check see a 140 mg/dL.

(Sigh.)

Larry vibrates again, this time indicating that my BG is continuing to dip into the low 60s.

"Whatever, Larry. Stop freaking out. You're obviously hallucinating."

Don't let this little exchange dissuade you from Larry, though. He's actually been pretty reliable since starting back up on Saturday. We'll see how that holds up over time.

Either way, we're doing fine for now. He brings me a sense of accountability and constant monitoring, that I'm actually a part of what my body is doing and that my management is in fact at the forefront and can't be ignored.

That's something, even if it's in my head.

Once we move forward a bit with some real-live CGM data, I will again consider whether it's prudent to embrace another Pump Hiatus.

Larry, glad to have you back at my side, even for a little while. You're looking swell so far, Larry, Still goin' strong. You've warned me when the room starts swayin', Larry, and I know to test when you're crowin. Glad to have you back, Larry. It's so nice to have you back where you belong!

Monday, July 18, 2011

A Decade of Site Changes

This is my 10th year of insulin pumping.

So apparently, this marks a milestone Pump-A-Versary in my D-Life.

We met for the first time in June 2001, the summer just before my final semester of college and one of the busiest times of my life. After 17 years of two to four injections a day, I gave up those daily syringe meetups for a piece of technology. A device that promises to provide a constant stream of insulin throughout the day, and some extra boosts when needed for food or other variables.

An exact day isn't marked on the calendar, but it was mid-year and warm and I remember getting my intro to pumping while wearing shorts. My Minimed pump rep was a fellow PWD, a cool guy who later went on to work at Deltec Cozmo and helped convince me to try that product out for a bit.

Much has changed in the past decade, from the pump itself (early Minimed versions, upgrades, a switch to the Cozmo briefly, then back to MM Paradigm) to the style of supply needed to make it work. We've moved from Michigan to Indiana, gone from single to married, college kid to professional working guy.

Yet the process for connecting to the pump has remained mostly the same.

(Here's the remedial part, for those non-pumpers who are curious or anyone else who might have an interest in the Pumping 101...)

Disconnect the now-empty tubing and reservoir from the pump. Punch a few buttons and listen to the pump whir as it primes to start again. Wait for the beeps to alert me it's finished, and ready to go. Twist on the new tubing and hold down the ACT Button, then waste as much as 16 units of insulin to fill the 43'' tubing until little drops appear at the end.

Then, the self-stabbing ensues.

Mostly, I've relied on manual insertion rather than the intimidating insertion devices that are supplied. I can easily stab myself with the set needle by hand, but just dread the anticipation and unreliability of waiting on a device to do the dirty work for me. That's changed during the past year a bit, and I've also started allowing my wife to assist on some hard-to-reach spots on the arms or backside. But mostly, it's all me. The 90-degree sets hve never worked well for me, so I have mostly used the Silouette or other angle-insertion sets.

Find a new spot of real estate somewhere on my body that isn't sore or scarred from past use, keeping in mind where I've most recently gone. Sometimes I wonder whether there's any upcoming activities, like dancing at a wedding or wanting to sleep on a particular side again, that might deter me from using a particular spot. An accompanying CGM site might also influence the decision-making here. But once it's settled, the stabbing begins.

Squeeze some of the fatty tissue on my body, assuming there is some. And tease my skin with the sharp needle, holding it above as if to warn myself of the nearing self-stabbing. Even though I've done this a thousand times before, I hold my breath before piercing the skin. Sometimes, I clench my teeth. Enough times growing up of hitting a muscle or nerve has jaded me. Slowly, the set sides in. I release briefly, then pinch again just to make sure all is well.

Pull out the needle. Connect the tubing. Send in the .3 units to fill the cannula. Inspect the site, just to make sure all looks OK and no signs of blood are found in the cannula.

Once in a while, the timing works out to allow for a rare shower where I'm not connected to anything and have no sets attached to myself. Sometimes, I'm already dressed and ready to start the day. Other times it's afternoon or evening. Occasionally, I am at work or visiting somewhere else and being a bit more discreet about the new set connection.

By my count, I've done more than 1,000 of these. (The math: Estimating two a week, multiple that by 52 weeks -> 104 per year x 10 years = 1,040. Subtract my five-month Pump Hiatus where I went back to Multiple Daily Injections, and you get about 1,000. Assuming I've done more than the two a week at times, the number is likely a little bit higher than that.)

Sometimes, the frustration has mounted and become overwhelming. A break helped. But, we move on. Just another day in the life of an insulin-pumping diabetic. Another site change, another day, another year. Now, we start the next decade of site changes.

With that, we find an old pal from earlier this year: Larry The Loaner CGM. Hello again, my friend.

To Be Continued...

Friday, July 15, 2011

Ice Cream for Diabetes

Updating what I wrote a week ago, the 22nd Annual Ice Cream Social in Indianapolis on July 8 was a huge success!

Consider this update the "official" public relations-friendly account of the vent, rather than the past post expressing my disgust at one's critic's response to the ice cream social.

Put on by the American Dairy Association of Indiana, this event on Monument Circle in downtown Indianapolis is reportedly the state's biggest ice cream social and takes place as part of National Ice Cream Month. Not to mention it happens in the Hoosier State, that produces the second-highest amount of ice cream nationwide. (Some fun ice cream tidbits can be found over at this blog, such as the history of ice cream dating back to 4 B.C.!)

For only $3, visitors could enjoy a bowl of Edy's "good stuff" light ice cream with various Smuckers toppings - including sugarfree chocolate, caramel, and strawberry.

This has been going on for more than 20 years now and this was the first of a two-year cycle where all the proceeds go to benefit the Diabetes Youth Foundation of Indiana, which supports/educates/empowers young people living with Type 1 diabetes and owns the only D-Camp in Central Indiana designed specifically for PWDs! (Disclosure: I'm a proud board member, despite my very limited exposure to a different D-Camp after my diagnosis at age 5.)

Hundreds (maybe even a thousand+) of people came out for the ice cream social on a sunny Friday with temps in the mid-80s. Great sundae-eating weather, indeed! And you know what's awesome? A total $6,403 was raised for the DYFI!!!! Totally awesome, and this can only mean some great things for our local D-Camp down the road!

More than 30 "celebrity" scoopers came out to volunteer, those being from the ranks of local media personalities and such. Face-painting and music and games were going on, along with a handful of mascots surveying the scene - McGruff the Crime Dog (who was celebrating his 31st birthday on July 8), Trooper Teddy of the Indiana State Police, Boomer of the Indiana Pacers, Rowdie of the Indy Indians baseball team, Buttercup of the American Dairy Association of Indiana, and Maxwell who represents the Indy Animal Care and Control. Oh, and the real-life Molly the Cow from Purdue Dairy Sciences in West Lafayette.

The kids and families able to be there had a blast! As did our DYFI Director and fellow Adult Type 1, Jenna Holt, seen in the photo there with Buttercup!

One cool person I had the chance to meet at the social was Mr. Norman Wilkens, who's a health care and PR consultant with decades of experience from doc offices to hospitals and more. He coordinated the social in years past, and has remained an active volunteer for the Dairy Association. But what's even more interesting is that he's the son of one of Indiana's first endos, and back in the 40s his dad helped bring about the concept of D-Camp!

Aside from that, it was just a hot day with some ice cream fun and festivities!

Personally, I indulged in a SWAG-worthy sundae with sugar free chocolate syrup on top. Sadly, some it became a melty mess in my dish as I was trying to multi-task with mingling while eating. But the 50g or so taken was very worth it, and my D-math was pretty much on the money as the rest of the day brought on some stellar BG numbers. (Until my pump site got fussy that evening... but I digress.)

They were even doing blood tests there, though I didn't get to test my hand (ha!) on that. My meter was back at the office. But as always, my pump was at the side to bolus for any ice cream that may find it's way into my system.

Not only was there ice cream enjoyment, but there was also advocacy. Some expressed concerns or interest in the fact that this ice cream event was affiliated with a diabetes-focused organization. My Loving and Supporting Spouse Suzi Q, who spent the entire morning and afternoon volunteering, reports that a few people at her tent mentioned that. Additionally, in searching for coverage on this, I found a handful of posts or comments where this came up.

The response was simple: the DYFI focuses on Type 1 diabetes, and it's simply a myth that any Person With Diabetes of any age (child or otherwise) cannot enjoy some ice cream on a hot summer day. Like most carbs and food choices, moderation is key and healthy, responsible meal choices are possible if one so chooses. After all, this isn't the Diabetes Dark Ages where that "no sugar mentality" was common.

Those of us "in the know" who actually live with diabetes clearly understand what we can and cannot eat, and the impact it has on our health both short-term and in the long run. So, stepping outside the community for a moment, I'll point to what a non-PWD says about the relationship between ice cream and diabetes:

Communications head Jenni Purcell for our dairy association here says dairy products and diabetes can work together. "Dairy is very important in a diabetic diet because milk, cheese, and yogurt have a protein that helps stabilize blood sugar." She adds that a diabetic can have a sweet treat, so why not ice cream?

Oh, that reminds me: a Certain You Know Who didn't show up, as far as anyone knows. But it's not like we could've picked this person out of a lineup if asked to. He apparently just went away. (Update: Wait, nevermind...)

Overall, we all had a great time and raised money for a great cause! More photos of the event can be found at the Dairy Association's Twitter page and hopefully soon on the group's blog! In the meantime, here's a video below to check out!

Monday, July 11, 2011

A Culture Shift

The third Roche Social Media Summit brought JDRF CEO Jeffrey Brewer to join us for a lunch-time discussion. His talk reinforced what I'd experienced a few months back during the JDRF Government Day in D.C. when meeting and hearing him speak for the first time: This guy "gets it" and he's doing what is needed to make this organization more inclusive and effective for all of us in this community.

From what I observed from many in the room is that they agreed, if the nodding heads and twitter-comments expressing approval were any indication.

Some highlights I took from Jeffrey's talk:
  • Name revision: from the Juvenile Diabetes Research Foundation to just the general acronym-centric JDRF. This isn't as drastic as it could be, but it represents a shift that keeps the four decade old foundation while simultaneously eliminating the word "Juvenile" in order to be more inclusive. Moving forward, there will be a new logo, new messaging, new tag line.
  • New motto: "Cure, Treat, and Prevent."
  • The cure is a long-term goal and we won't rest until we achieve that, but it's a marathon not a sprint.
  • JDRF was founded by parents, and in the past the group's mission has been focused on them and their needs only. That's been limiting. If JDRF is perceived to be only focused on children, it's missing a huge piece of the picture of those it's supposed to be helping. Represents the interests of all people living with this disease.
  • Adults represent 86% of the Type 1 diabetes community.
  • Most Adults With Diabetes don't believe we will reach a cure in their lifetimes, and Jeffrey says that's a shame but probably a reflection of some badly set expectations in the past. Prevention is a key in making sure that future generations don't have to live with diabetes as we do.
  • In past, the focus on a biological cure was a problem in reaching out to adults. People just wanted a cure so badly that they thought they could just rush in and raise money to get to that "a-ha moment."
  • The JDRF has an opportunity and responsibility to do a lot in the care and treatment arena, to really transform people's lives in how they Live With Diabetes short of that cure being realized.

Research is still a huge part, but it's so much more than just research - it's the pipeline of getting that research from the laboratory to the actual person who needs it. That means advocating with the FDA and creating more relationships in the business market to help connect all the dots so that better technology and a cure aren't just being pursued and developed, but people can actually get access to the technology and that cure in the end.

He said, "It comes from the fundamental principle that we're not successful until these things are available to people in their doctor's offices. It's not about when it happens in a mouse. It's not about when it happens in a limited number of people within a clinical trial. It's about when it's available, to everyone who needs it, in a doctor's office. That's success to us."

Overall, what struck me the most was Jeffrey's emphasis on a culture-shift within the JDRF. One that is national and trickling down to the local communities. One that is getting at a broader diabetes community.

A story that stood out to me during Jeffrey's talk was when he referenced an anecdote read on someone's dblog, about that person being at a walk and being asked by a volunteer: "So, do you have a child with diabetes?" There was an assumption that person was a parent of a child with diabetes. But the answer so many of us have given, at walks and other D-events and activities, was what Jeffrey heard that day, that the person being asked that question was an Adult With Diabetes who was there walking for him or herself.

"We have a bit of a culture shift to make as an organization, to make it more friend to all people living with diabetes," he said.

My views on the JDRF have been jaded in the past, based on my exposure to many of these "kid-themed" messages of the past. I've echoed what others have said in the D-Community: That as adults, we felt ignored and not represented. So, I stepped away from this organization years ago based on my experiences. But more recently, I'm very truly encouraged by this new direction. I feel represented. The JDRF is giving me hope, whether or not I believe we'll have a cure in my lifetime. Hope that tomorrow will be brighter and that we are actually moving toward that day when we will see a cure for Type 1 diabetes, and future generations won't face this chronic condition as we do now.

Yes, it may take time to see these beliefs and efforts trickle down completely to the local communities. That's where we come in. I do hope that other Adults With Diabetes give the JDRF a new chance. If something isn't happening, maybe that's a signal for us to get involved locally to be a part of that change. Because it's up to us, as a community. Together.

This is just the beginning, and I feel that we're moving forward.

Thanks, Jeffrey, for doing what you do and being who you are. And making a difference.

Friday, July 8, 2011

Yes, We CAN Eat Ice Cream!


Sponsored each year by the American Dairy Association of Indiana, this event celebrates National Ice Cream Month and recognizes the Hoosier State’s #2 ranking in U.S. ice cream production. It happens on Monument Circle in downtown Indianapolis from 11 a.m. to 2 p.m. For just $3, guests can indulge their taste buds with gigantic sundaes made from Edy’s Slow Churned Light Ice Cream and drizzled with Smucker’s chocolate, strawberry, caramel, or butterscotch syrups. Sundaes will be served by more than 30 “celebrity” scoopers that include local media personalities, sports notables and business dignitaries - including Tony Hoard of America’s Got Talent.

All the proceeds this year go directly to the Diabetes Youth Foundation of Indiana, which runs the only D-Camp in Central Indiana and supports, educates and encourages young people with Type 1 diabetes. (Disclosure: I am a DYFI board member.)

So, if you happen to be in or around Indianapolis: stop on by!

Now, we have to get into some ranting and raving. I wasn’t planning on it, but it’s unavoidable. I need to vent. So please, accept my apologies from the start for any asshattery that follows. And in respect to the above-mentioned Disclosure, nothing posted here is meant to signal my speaking for anyone but myself. It’s my blog, and I write what I want.

(/Ranting Digression Begins):

A message to the point: Yes, we CAN eat ice cream.

It’s a myth to think otherwise.

This is specifically in response to Mr. Eco Chef who made it a point to call up and berate my friend, Fellow Adult Type 1, and passionate D-Camp Director about the evils of sponsoring this kind of event where we’re encouraging people to eat ice creamy sugar in the name of Type 1 diabetes.

First, you might want to start off by understanding there’s more than one type of diabetes. Go look it up. Insulin is necessary for any human and everyone needs it to live – whether it’s natural in a working pancreas or artificially supplied by syringe or medical device.

So, before you open your pie-hole and criticize what you believe is an "atrocity," get your facts straight about the condition you're focusing your misinformed energy on. This isn't the Diabetes Dark Ages, and we can responsibly eat what we want as People With Diabetes.

Onto the myth… That we can’t eat cookies or ice cream or anything of the sort. It's a myth perpetuated by those who are convinced that any ounce of sugar is pure evil and will likely lead to an otherwise avoidable death.

For those in the know, clearly this isn’t true. We People With Diabetes know based on our daily regular experiences of Living With Type 1 Diabetes that we can eat sugar or pretty much whatever we want – assuming we correctly calculate the carbs it breaks down into and then we take the correct amount of insulin for what we’ve consumed.

Maybe in the old days, the "no sugar" mentality was the way it was. Before diabetes management and technology and medical professional knowledge evolved to what it is today. Now, it's pretty common knowledge for those who actually want to know or care - that we CAN eat sugar and ice cream.

Those who think otherwise need a clue. Just like you may think you can "reverse" Type 1 diabetes or cure yourself of this autoimmune chronic condition, you are sorely mistaken. I direct you to a video, to view at a time after you pull your thick head from the confines of your ass. (A.K.A. What NOT to say to the Parent of a Child With Diabetes.)

Obviously, eating a tub of ice cream every day isn’t healthy for anyone – including those with any form of diabetes. And it may not help our waistlines. But an occasional ice cream sundae with sugar-free chocolate syrup, at an ice cream social, is not going to kill us.

Oh, and a specific note to you, Mr. Self-Proclaimed Eco Chef Extraordinaire: You truly suck. Next time you have the urge to tell a young lady so incredibly dedicated to a charity that there’s a “special place in hell" for her, please don’t. If you don't support the message or focus of a fun event, don’t attend. We exercise that ability regularly by not tuning into your stupidly idiot cooking segment on the morning news every other Saturday. We stay classy, and it'd be nice if you did the same even if that’s a stretch for your close-minded melon of a brain to comprehend.

There’s no need to condemn us as an organization for being a part of this ice cream social, saying that we’re a lost cause and have sold our souls. Clearly, your claim that “no child with diabetes should have sugar” shows what a moron you are. You may proclaim to be “an educator who travels around the U.S. ‘reprogramming’ people on how to eat healthy,” but I say you're an uninformed fool twisting the facts to suit your own agenda. And for that, I call bullshit on you.

So, I dare you to show up and protest. I double-dare you. Seriously, I do.

Don’t make me summon the D-Mob. Just like you wouldn’t like Dr. David Banner when he gets angry, you certainly wouldn’t like the outcome of pissing off the D-Community. I guarantee it. We’ll go all Incredible Hulk on your ass, medieval style.

Some may be thinking at this point: This Hoskins guy is mad, over-reacting, going off the rocker on someone in much the same way as the above-criticized Wonder Chef did in the first place. Yep, that may very well be. I am mad. Probably over-reacting. Acting like an ass-hat.

But there's a difference: at least I know What The Fructose I'm talking about, not sanctimoniously criticizing someone without first knowing what I'm ranting about. From one asshat to another asshat, Chef: I Call Bullshit on your asshattery.

Why is this so important to rant about? Because so often, kids are made to feel different because they can't have ice cream. Or a cookie. They are singled out in class and made to feel different. Other kids make fun of them. They aren't invited to sleep overs or birthday parties because other parents are too scared of what could happen because of diabetes. As adults, People With Diabetes are criticized by friends, family, and co-workers over every little thing they eat.

Most of the time, it's because of this perpetuated stereotype and myth that fuels this. People don't understand that it's OK for diabetics to enjoy treats in moderation. We can because of modern medicine and health management.

And the kind of crap you spew damages our efforts as a community to make people more aware of what is and is not true. So for that, I denounce you and your despicable tactics.

(Digressive-Rant Completed, after taking a breath or two – or 12 – and avoiding any more rise in my blood pressure… Happy, Happy, Joy, Joy.. La la la la.)

So with that, I’m off to the ice cream social on Monument Circle, where I’m going to be a volunteer scooper and will most definitely enjoy a hot fudge sundae and some good times in general – all to benefit D-Camp!!!

On second thought, laced with calm and sprinkled with smart-ass: Mr. Chef, please join us. I’ll offer you a sundae. But no cherry.

And if you show up, I'll be pleased to meet you. Hope you guess my name.


Wednesday, July 6, 2011

Outrage Makes a Difference

In the couple weeks since the third Roche Social Media Summit in San Diego, I've been wearing the blue bracelet that say Act On Diabetes NOW. These were passed out by the International Diabetes Federation, and I've been wearing it to work and around generally to keep that whole aspect of the summit fresh on my mind and as a reminder that it's time to make a difference. This has been a conversation-starter with some people, but mostly the bracelet has helped me keep an important message in my heart from slipping away from the mind.

Not that it'd be easy to forget the IDF presentations at the recent summit. For me, one of the most moving aspects of the whole experience was the dinner-time presentation by IDF president Jean Claude Mbanya.

He spoke passionately about the outrage he has on the fact that so many people and children die worldwide from diabetes, simply because they can't get access to insulin. As a result, people die simply because of where they're born. That's NOT how it should be, some 90 years after insulin was first made. 

The IDF is trying to create global awareness about this outrage and get more attention from world leaders, including the United States and President Barack Obama. 

Before the summit, I was generally aware of the IDF and what it did. Generally speaking. I knew of it's efforts in establishing World Diabetes Day and what that is all about, but mostly I knew little about what else the organization did and those behind the scenes. No relationship existed, and despite my support of WDD and IDF generally. There wasn't the same kind of familiarity as I have with groups such as the JDRF or American Diabetes Association that has a real tangible message and impact here in the U.S. 

Fellow D-Advocate Scott Johnson said it best at the summit, during a presentation by the IDF communications chief Isabella Platon earlier that day: The organization's message doesn't resonate with us, and we feel very disconnected from what it stands for. There is no relationship and we haven't seen that interaction the same as others have demonstrated, and as a result we haven't had as much motivation to advocate for the IDF.

Now, it's about US. But then again, it is. WE are not only diabetics, but we're trying to help spread the message and share stories and that's what the IDF wants us all to do. The afternoon presentation was tough because those at the summit grilled and questioned the organization for not working to establish a two-way relationship with us, but rather just occassionally sending us press releases and expecting us to be outraged and then to write about that. I'm sorry, but if we aren't connected and we have all these other personal things to blog about while dealing with our own lives and D-Management, trying to force teeth isn't as high a priority for me.

We need to do better, but so does the IDF in working with us to help spread the message. It's the line from Jerry MacGuire: "Help me, help you." That's the point.

As said earlier, the afternoon discussion attitude melted away with the evening speech. It's more clear now that we are moving in the direction of establishing a better relationship that can truly make a difference for so many people.

Generally, the IDF asked for the Diabetes Online Community's help in getting word word out more about the Blue Circle. So that more of the general public and diabetes community knows about what the IDF is working toward. Four million deaths occur globally each year, and the deaths and complication rates are higher in some areas simply because that insulin access is so limited. Just like a child can die in a part of Africa because he or she is born there rather than in another village in India, children and adults can die in parts of the U.S. because access to healthcare is so less available. This impacts us all, and it's an outrage.

But people and politicians aren't outraged by this right now. Unlike AIDS and other diseases that seem to have more foundational outrage and even unification worldwide and within their own communities. Diabetes does NOT have that, and that is what must change. It's not acceptable that "accidents of geography decide whether someone lives or dies from diabetes."

In September, there's the United Nations Summit on Non-Communicable Diseases (NCD) and while it focuses on the global impact of various conditions and diseases, diabetes doesn't have the kind of attention that it should based on the epidemic implications. As of now, the U.S. leadership isn't on the agenda to attend - something the IDF wants to change. We can work to make that happen, writing a letter to the White House and our elected leaders pushing for their attendance.

The new IDF campaign called "O is for Outrage" is working toward that goal, and this is specifically what we can do to help:

We are asking the U.S. President to show the world that he is committed to the prevention and control of non-communicable diseases (NCDs). This topic is the subject of the UN's second summit on global health issues [on September 19th, 2011]. Having President Obama attend will inspire other leaders to take this issue seriously because "we do not want the world to sleepwalk into a sick future that is avoidable." - (Ann Keeling, IDF CEO). 

The IDF is offering to mail a postcard to President Obama on your behalf, to ask him to attend this summit in September. You can choose from the wording suggestions offered or write your own card. They'll be mailed Aug. 31. 

I want to help make a difference. We have World Diabetes Day coming up in November, and there's things we can do to help spread D-Awareness by getting locations lit up in blue. But it goes beyond that, from the UN Summit advocacy to promoting efforts such as what's happened with the Life for a Child. Or just by watching this video, and passing it along:




We CAN make a difference. You CAN do this. So please, go ahead and do it.

Tuesday, July 5, 2011

Guest Post: Wall Corners & Cartwheels

Today I am living it up guest-post style for Kim, getting the chance to spend some time Texting My Pancreas while she's off having a blast at this year's Friends for Life conference in Orlando. I'm sad to not be joining some friends for all the fun, but am honored to have the opportunity to chime in here short of being there. In good form, the chosen topic this round is some food for thought about Wall Corners & Cartwheels - or simply: the joys of insulin pumping in the workplace.

Enjoy! And please, drop some comments while you're over there! Yes, You CAN do this!

Monday, July 4, 2011

My Patriot Pump Says: "Happy Birthday, U.S.A"

It's Independence Day in the United States of America.

And so, my Patriotic Pump has a message:
Happy Birthday, U.S.A.

Displaying again the patriotic skin first shown a few weeks ago on Flag Day, my Minimed 722 is being all deja vu-like and recycling some of the thoughts from that day.

Cool cover created by Medtronic's SkinIt.

Here's another view...

All in the palm of your hand.

 And another...

With stove and egg timer in background...
 
And so it is (again).

On the evening of July 3, we spent time with two group of friends both outside and inside our neighborhood.  One neighbor wasn't familiar with my Type 1 diabetes, but we ended up discussing paramedics visiting our home - (it's happened, from time to time). That led to a general D-101 talk about carb counting and pump use, and I was able to show off my American Flag-decorated insulin pump. It stole the show, and impressed all.


So, it was a great day of fun and fireworks festivity and freedom celebration, as well as some D-Awareness to the neighbors!!!

So, with that, I leave you with this properly-themed quote to end the post:

"They who can give up essential liberty to obtain a little temporary safety, deserve neither liberty nor safety."
 - Benjamin Franklin, shortly before Feb. 17, 1775 as found in his notes for a proposition at the Pennsylvania Assembly.

Important words, Mr. Franklin. Thank you. Now. I just hope we listen...

Happy Fourth of July.