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June 22, 2012

HCPs, Patients, & the Web: An Interview with Dr. Berci Mesko.

Dr. Berci Mesko.  That guy.  You know him.Berci and I 'met' online seven years ago, I think (which equals out to about four hundred in Internet years), and had the opportunity to toast in person a while back.  I've been following his progression in medicine through social media, and I'm proud to be chatting with him here on SUM today, looking forward to what's next for this socmed trailblazer.

Kerri:  You've been a strong voice for social media being part of the health care system.  What initially ignited your passion in this space?

Berci:  My answer is quite simple. I have been a geek for a long time and when I had to face the old structures of medical communication and education, I was surprised I couldn't use my well-designed online methods to solve my challenges in medicine and healthcare. So I started working on new solutions that could be implemented into healthcare. I first became active in the medical segments of Wikipedia, became and administrator there, then I found out a blog could be the best platform for my online presence so I launched Scienceroll.com. Later when I tried to find quality social media resources focusing on my fields of interests such as genetics or cardiology, I realized how desperately we need a service that curates medical social media channels for free, this is why I launched Webicina.com.

As you see, I had very clear reasons to become more and more active and to find my own solutions as a geek.

Kerri:  Why do you think it's important for health care providers to be involved in the social media space?


Berci:  It might be a surprise, but I don't think all of them have to be involved. There are a lot of patients who do not use the internet in their health management and do not require their doctors to communicate online. But as the number of e-patients is rising rapidly and as the amount of information we have to deal with is growing day by day, social media can offer great solutions for simple problems such as being up-to-date or communicating with peers.

Basically, using social media is the same as having a real life conversation only with a few exceptions therefore I think the same rules should apply for social media as for offline communication even in medicine. Be respectful, listen closely, be consistent when publishing online and always think twice as whatever content you publish online as a medical student or professional will hunt you down.

Otherwise, social media can be a huge help for physicians by using online platforms, crowdsourcing and other extremely useful features if they know exactly what they want to achieve and know the rules and limitations.

Kerri:  Where is medicine going, in a social media sense, and how can patients be more actively involved, in your opinion?

Berci:  The only thing we don't have to deal with right now is the way patients use social media. Their motivation is clear: they have a medical condition and need information. The easiest way nowadays to get information is to turn to the internet. There is no question, they will use it more and more frequently in the upcoming years.

On the other hand, this is the job and responsibility of medical professionals to become their guides when it comes to the assessment of quality information online. Physicians should be able to meet the expectations of e-patients. As Farris Timimi, MD of Mayo Clinic Center for Social Media said, this is now part of their job. Medical professionals are natural communicators and now social media is a a huge platform used for that purpose and they have to know the tricks and potential dangers. The only way to do this properly is including digital literacy in medical curriculum just like I did when launching the world's first university course focusing on social media and medicine for medical students and also when I launched the global format of this course so then every medical student in the world can get this kind of knowledge even if they don't have such a course at their medical school.

Kerri:  How does Webicina help bridge the gap between health care professionals, patients, and the web?

The mission of Webicina is to curate the medical social media resources in many platforms, from many perspectives and in many languages. Coming up with the most relevant social media channels focusing on a medical condition or specialty is extremely difficult. The process of curation consists of 3 steps: 1) crowdsourcing through our social media channels that have been built for over 5 years, 2) the Webicina Team designing a collection based on the results of the crowdsourcing, and 3) checking each resource again and providing the reasons why it was selected.

Through PeRSSonalized Medicine, our users can follow the latest updates of any social media channels dedicated to medical conditions and specialties in the simplest, customizable, multi-lingual social aggregator in which if you click on the e.g. German flag, not only the platform will be in German language, but the resources included in the database will be the best German ones. We work with international collaborators to ensure the amazing quality of these collections.

We also provided an award-winner iPhone and Android medical app with a special health 2.0 quiz. Of course, everything is for free on the site.

Then we managed to crowdsource an open access social media guide for medical professionals and pharma.

We try to help e-patients and medical professionals use social media efficiently in as many ways as possible.

Kerri:  And to cap this off on a less structured note, what are the top three social platforms you're fiddling with these days?

Berci:  I would say I'm using Google+ these days quite frequently, but regarding other new platforms, I'm not really convinced those would help me do my job better so even if I gave a try to Pinterest and others, I keep on using those communities I've been building for years to filter the information for me every day (Google+, Facebook, Twitter and Friendfeed).

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By way of disclosure, I am on the Webicina Advisory Board.  I have no clue how to function on Pinterest.  And also, I've got legs.

November 17, 2011

Giving You a Reason to Believe.

The Diabetes Research Institute is one of those places that, walking through its halls, you feel inspired.  (I feel the same way when I walk through the Joslin Clinic in Boston - true diabetes magic happening there.)  The people there are focused solely on finding a cure for diabetes, and that's a mission I can truly get behind.  Today, the DRI's Tom Karlya is sharing some information on the Reason to Believe campaign. 
*   *   *
Kerri:  Hi Tom!  You and I have worked together in the past, and I'm very familiar with your passion for finding a cure for this disease that both your kids and I share.  For those who don't know, what is the Diabetes Research Institute and what is your role there?

Tom Karlya from the DRITom:  Thanks Kerri, over the years it has been exciting to work alongside you to help the diabetes community.

The DRI is the largest and most comprehensive research center in the world with a multidisciplinary team of scientists passionately committed to curing diabetes in the fastest, safest and most efficient way possible.  We are solely dedicated to curing diabetes by finding a biological cure – restoring natural insulin production in patients.  This has been and will continue to be our singular focus until that goal is reached.  And it will be reached.

Kerri:  I've heard a lot about the Diabetes Diplomats, and I know that outreach effort has engaged an amazing group of people.  Who are the Diabetes Diplomats, and what are they all about? 

Tom:  This program was created so people with, and even without, diabetes can run programs right in their own community.  Kids, adults, Grand Parents, workers, students, all get involved.  School site events, community involvement events, and even personal fund raising pages can all be used to both educate and help raise funds.  Big events are great; the Diabetes Diplomats are more grass roots and local where the person running the event is the central point.  It is so easy even kids in Kindergarten have been the central point of a Diabetes Diplomat program. We are using our Reason to Believe Campaign as a jump start for everyone to hear about the program and get involved. Fifth Season American Idol Finalist and Actor Kevin Covais is our spokesperson, we are thrilled with everyone who is getting involved. 

Kerri:  For Diabetes Month, I've seen the amazing Reason to Believe campaign that the DRI has kicked off.  Can you tell us more about that campaign, and what the goal is?

Tom:  Clearly managing diabetes is so crucially important but the idea of a cure is just as alive today as it ever has been. Curing it has been and will continue to be our singular goal.  With that idea in mind there is a Reason to Believe.  The notion of a cure is not pie-in-the sky.  It is real.  I invite anyone to visit the DRI and touch hope ... this hope is real and anyone telling you it’s not is wrong.  Is it tomorrow, no it is not.   But if more places collaborated and more money was spent on research that will actually make a difference; I assure you we would get there much quicker.  People DO believe in a cure and the very reasons are the loved ones they have living with diabetes.  People can click here to learn more and see some incredible videos of people who have a Reason to Believe.

Kerri: How can the amazing diabetes online community get involved in this campaign?  We want to help! 


Tom:  The most important thing to know and to remember is that this is only commencing this month and will continue all the way through November 2012 so people can surely start to get involved now.  If the DOC could help spread the word about the program, THAT would be incredible.  People all around the country, and even in a few foreign countries, are informing us of their Reason to Believe Diabetes Diplomat projects. But with the DOC’s help we could do so much more. 

School site ideas are fabulous.  Easy, quick, educational, and raise funds while having fun.  One Principal from Pennsylvania stated that this program was the finest he had seen in all of his years as an educator.  Walkathons, dress crazy day, caps for a cure day, team jersey day, and pajamas at school day are all some of the fun ideas.  Community events like being involved in a marathon; selling scannables (contact me, I’ll explain) in retail stores, and in one huge candy store (Deborah Ann’s in Connecticut) they are holding a sweepstakes BUT ALSO explaining why candy is not ALL OFF LIMITS to people with diabetes as a teachable moment.  Pro Golfer Kelli Kuehne has connected us with Clemmy’s Ice Cream who is donating 50 cents to the DRI on every pint of their sugar free ice cream they sell in Florida in November. Pro bowler Ryan Shafer is also involved in a really fun event that bowlers are all involved in his hometown.  We have had incredible help from our sponsors Animas, LifeScan, Diabetes Health Magazine, and Children with Diabetes.  Anyone who wants help can email me personally at tkarlya@drif.org and ask me how to get started.

People can find out more about the DRI at DiabetesResearch.org, go to our Diabetes Diplomat page, our Cure Diabetes Page, or even our Diabetes Research Institute page on Facebook.

In closing, I just want to add my thanks Kerri for giving us some of your valuable time and space here at Six Until Me to help us get the word out.  You continue to not only inspire us at the DRI, but also inspire and educate the world on so much in your unique style.  I am so privileged to call you a good friend as well.  Thank you.
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Thank you, Tom, for your tireless advocacy and kind words.  Don't stop believing. :)

October 06, 2011

Vlog: Interview with Charlie Kimball.

Charlie Kimball is one tolerant guy, because not only did he allow my child to sit in his racing helmet when she was two months old (risky move there, Charlie), but he also offered up some of his time to record a vlog interview about racing in Indy Car with type 1 diabetes ... and a car. 

And be sure to root for Charlie as he takes on his last race of the season next week, October 16th in Las Vegas, on his four year diabetes anniversary.  

(For more on Charlie, you can visit CharlieKimball.com or his personal Twitter account, @charliekimball.)

August 05, 2011

Hacked: Jay Radcliffe, Insulin Pumps, and Diabetes Sensationalism.

Jay Radcliffe is a fellow type 1 diabetic, and I remember reading his diabetes blog way back in the day, when I first started blogging.  We read and commented on each other's posts, and we were both part of the blogosphere when the DOC first started to grow.  I knew he was married, had children, and did the day-to-day diabetes stuff that I did.  


Which is why when I read the mainstream media's take on his pump-hacking research (this article, Insulin Pumps Vulnerable to Hacking, for example), I reached out to him immediately.  "Can I just tell you that my mother sent me this article about your research?  Do you have time to talk?"


Jay was out in Las Vegas this morning, attending the Black Hat security conference, but he and I had a chance to hash it out over the phone.  


"I know you!  And I know you as a diabetic, not as this guy who hacks insulin pumps and has a billion articles floating around about it on the web right now.  I have a few questions.  Starting with, why did you decide to hack into your own insulin pump?"


"I'm a professional security researcher.  I'm curious - I want to find out how things work," Jay said.  "I saw a presentation two years ago on parking meter hacking, and I was really inspired by that.  It prompted me to talk to my co-worker with type 1 and said, 'We should try that.'  I'm wearing these devices every day, and I wanted to find out how secure these things are."


"So you took your own pump, and your own continuous glucose monitor, and hacked it to bits, literally and figuratively?"


"Hacking isn't what people often think it is.  It's not about breaking into things or being malicious.  Hacking is making something do something it's not supposed to do, or not intended to do.  Like the guys on Mythbusters do," Jay said.  "And vendors need to know about these vulnerabilities. Is it deterring from actual diabetes cure research?  I don't think so, but if it is, people can't be mad at me for bringing the issue up.  If you want your insulin pumps to be safer, I have to do this.  I'm sorry if it makes people upset, but I'm doing this as ethically as possible.  I didn't disclose the brand of device that I wear, and I kept the company protected to the best of my ability."



This makes sense, but I ran a quick Google search before getting on the phone with Jay, and I saw all kinds of articles making it sound like people with insulin pumps were the next targets for technological terrorism, and people within the diabetes community were upset because this kind of security breach potential could perhaps cause the already-slow FDA to cease diabetes device approvals in their tracks.  To me, as an Animas pumper who is waiting impatiently for the Vibe to be approved, I was not soothed.


"Are you concerned that you may have given the FDA another reason to hit pause on some device approvals?"  I asked him.  

"I am concerned.  Aren't you concerned about the fact that the FDA doesn't have any guidelines around wireless transmissions?  Don't blame the FDA's crappy process and make things less secure because you want something better.  Make it comprehensive and make it better, don't just move fast to get it on the market."


"I get that, but I’m not at all worried about someone hacking into my diabetes devices.  Jay, do you really think people with diabetes are targets of some kind?  And don't you wonder if, by bringing this issue up in such a public and pretty sensationalist way, that you're planting the idea into people's heads?" 

Jay is unflagging in support of his research.  "I've presented it on stage, and showed over five thousand hackers how to do it.  I suspended my own insulin pump, and I did it remotely.  And yet I'm still wearing my pump, and I am not afraid to wear my pump.  My hope is that other people will pick up the idea and work on it, and that the ethical and professional people will do more research and help make things secure."

"But do you really have to show the insulin pumper with X's over their eyes and the evil, pump-suspending guy lurking in the background?"

(I can't help it:  I respect the views of my fellow PWDs, but that doesn't mean I'm not frustrated when people sensationalize diabetes.  It's the same viewpoint I have when people want to use images of chainsaws when they are informing people about the very real risks of diabetes-related amputations.  I'm just not into that kind of press for diabetes.  I don’t agree with sensationalist journalism, so I don’t agree with the method that Jay chose to present his information. While I get the whole “sex sells, so you have to keep it sexy” ideology, his choice to present this security issue as though it was a secret agent plot isn’t something I agree with at all.  Similarly, I’m annoyed that the mainstream media is making it sound like diabetics wearing pumps are ticking targets.  This is the information about diabetes that makes the front page?  Societal fail.)

Fellow PWD and tech blogger, Scott Hanselman, summed it up nicely:  “I appreciate the message that Jerome is trying to get out there. Wireless medical devices need to be designed with security in mind. I don't appreciate blogs and "news" organizations inaccurately scaring folks into thinking this is a credible threat.”

"In security research, you have to bring home the point,” said Jay.  “The technical details can be boring, but a presentation at a conference like this can't be.  You need to show the most dramatic asset to keep people's attention and to make them care.  In this instance, the insulin pump is hackable.  I can suspend your pump.  And that can have serious consequences.  I'm not trying to hurt my fellow people with diabetes.  Instead, I'm trying my best to protect them.”  

As a pump wearer myself, and a continuous glucose monitor wearer, I’m not concerned about being hacked.  I’ll sleep fine tonight … until I see the sensationalist headlines of tomorrow.  And that’s when I might need a bolus of serenity. 

Sam Talbot: Putting Life First.

Sam Talbot is a talented chef, scoring high ranks as "Fan Favorite" on Top Chef.  My mother-in-law thinks he's handsome (and she's not alone - ask half of the ladies at FFL!).  And he is "one of us," living with type 1 diabetes since he was twelve years old.  

Recently, Sam joined the LifeScan crew as one of their celebrity spokespeople for the "Life First" campaign, joining fellow PWD Crystal Bowersox and B.B. King.  And yesterday, he took some time from his very busy AADE schedule to take my phone call to talk about his LifeScan partnership, food, diabetes, and ... Tank?
*   *   *
Sam Talbot is just a little bit taller than me.

Kerri:  Hi, Sam!  Nice to talk with you again.  We actually met at the Friends for Life conference a few weeks ago, during the Adults with Type 1 Reception.  I was with the girl who has the diabetes service dog.

Sam Talbot:  Hello, again! I was talking about that dog yesterday.  Such a cool dog.  They have a diabetes service dog here at AADE; it gave me a sniff but must have decided I was okay, because it left me alone after that.

Kerri:  So to jump right in with my questions, I'll start with this:  What made you decide that LifeScan was the right partner for you … and do they ask you to cook things for them?

Sam Talbot:  Did they make me cook for them before the partnership, as like a test?  (He laughed.)  No, I partnered up with them because it was a really easy, organic partnership.  I'm all about the "Life First" concept.  It speaks to how I live my life with diabetes.  It’s about diabetes living with you, not you living with it. It really is about life, first.

Kerri:  Totally.  Food is often a double-edged sword for people with diabetes.  It’s awesome, it’s evil … and everything in between, depending on blood sugars and all that.  With your diabetes-focused cookbook coming out, what’s the message you want resonating for people with diabetes?

Have you pre-ordered Sam's book?Sam Talbot:  My whole approach with the book, The Sweet Life:  Diabetes Without Boundaries, was about showing people that, as a person with diabetes, you don’t have to be pigeon-holed into thinking there’s no carbs, no this, no that.  That a militant lifestyle, and anyone who knows me knows I'm not a militant lifestyle kind of guy.  I have had carbs.  And a beer.

Kerri:  Oh, a beer?  What were you thinking?!

Sam Talbot:  I know, right?  It's not about limitation, but moderation.  In my cookbook, I talk about making small changes for a bigger impact,  Alternatives like light flour, less processed sugar … smart changes.  It’s a good mentality for anyone looking to eat well overall, not just for people with diabetes.  This book, and my message, is about 75% cooking, and 25% lifestyle.  It's about continuing to educate people, and really showing this "Life First" message.  We have a lot of events and appearances scheduled, and I'm planning to really get out there with this.

Kerri:  So what message do you have for the diabetes community?   


Sam Talbot:  When you're diagnosed, you're told that you're limited and that you have to live this limited lifestyle.  And that's not true.  You are not alone with this - there are a lot of people out there living with diabetes who are doing everything.  Like you.  And like me.  

Kerri:  And one last question:  Are you looking into getting a diabetes service dog of your own?

Sam Talbot:  I can't.  Tank wouldn't let that happen.  

Kerri:  Tank?

Sam Talbot:  My dog.  

Kerri:  Does Tank ever sniff out a low?

Sam Talbot:  Nah.  But he does search for surf

*   *   *
Thanks for talking with me, Sam, and I'm looking forward to checking out your cookbook The Sweet Life:  Diabetes Without Boundaries (comes out on October 25th - preorder, anyone?) and watching you make the most of this LifeScan campaign.  I'm proud to have someone like you representing our community. 

You can find Sam on Twitter at @chefsamtalbot, on Facebook, and on his personal website.  And of course, chef'ing.

May 20, 2011

Interview: Leah Fox and Pennies 4 Pumps.

Leah Fox, 14 years old, lives in Fort Collins, CO and has had type 1 diabetes since 2005.  With determination and an attitude that tackles challenges head on, Leah approaches diabetes management with the same gusto. Pumping insulin since 2006, she continues to love and believe in this therapy with all her heart. Leah’s hope is that all kids who want an insulin pump can have access to this amazing technology.

And today, she's taken a few minutes to let us ask her some questions about her fundraising efforts.

Leah's smiley faceKerri: What gave you the idea to start Pennies 4 Pumps campaign?

Leah: I got my inspiration from a diabetes camp called Camp Sweet Pea. Camp Sweat Pea is designed for kids with type 1 to get together and just have fun. When I first went to camp I saw that many kids were wearing insulin pumps. I went home and told my mom about the pump and 6 months later I got one! I loved my pump so much because it allowed me to live an easier life with diabetes. I wondered why every child with diabetes didn’t have one. That’s when I found out that not all families could afford an insulin pump because their insurance may only cover a small portion of the cost. Something pulled on my heartstrings when I heard that. I really wanted to help these families, but I was only 9 and I didn’t know how until I thought of a way.

I taught myself how to make beaded jewelry and my business Dragonfly Jewelry was born. I hand make all kinds of jewelry and 50% of the proceeds get donated to my fundraiser and 50% went back into my business. Pennies 4 Pumps came later when I suggested this idea to my student council when I was in 5th grade. Though the jewelry making was effective, the P4Ps campaign got lots of people involved and helped me to reach my goal more quickly. In the last several years 3 other schools have participated in this campaign of collecting spare change. All the money goes directly to the insulin pump scholarship fund. Dragonfly Jewelry has become an ongoing fundraiser for P4Ps. Through everyone’s help over 7,000 dollars has been raised. I feel so blessed to be able to have opportunities like this. I can’t thank all the people enough who have made this possible.

Kerri: Since you have diabetes and a pump, you know how important having the right tools for management is. How does it make you feel knowing that you’re giving other kids access to helpful tools they wouldn’t otherwise have access to?

Leah: I am so blessed to be able to have a pump and a healthy life. It feels incredible to give back. Through these fundraisers I’m able to help kids just like me, and that means so much. No one really knows what a diabetic’s life is like unless they have diabetes. Since I share type 1 with those I hope to help I feel like I can understand and be a friend to them. Even when I am talking to kids who may be newly diagnosed I always encourage them to consider the pump. Being out in the public selling jewelry or running the P4Ps campaigns, I have had so many opportunities to share my story and hear others. Sometimes money isn’t the only hurdle someone has to make when considering a pump. Maybe they just need some encouragement! I love the feeling of knowing that I am helping someone in need.

Kerri: What has been your favorite part of the fundraising process?


Leah: The most fun part of this project would definitely be when I awarded my first insulin pump scholarship. That happened in December of 2009. That was my goal from the very beginning and to finally reach that after three years was amazing. Though I was in 7th grade at the time, we were able to arrange a school-wide assembly at my elementary school where we ran the first Pennies 4 Pumps campaign. I served as MC of the event and got to talk to all the kids about how they made a difference by getting involved and participating in the P4Ps classroom challenge. I encouraged them to pursue areas where they could help others and then got to award the scholarship check of $3500.00 dollars to the family and their little girl. A roar erupted as I handed over the check! That was a great day for that family and me.

Continue reading "Interview: Leah Fox and Pennies 4 Pumps." »

March 25, 2011

Too Sweet Boutique!!

The lovely Amy and her daughterPart of pumping insulin is finding a place to stash your pump: in your pocket, in your sock, clipped to your belt loop, as part of a disco boob ensemble ... the possibilities are as vast as your wardrobe.  But sometimes you don't want just any ol' place to stick your pump.  Sometimes you want to sassy-it-up a bit. 

This is where the creative genius of Amy Holmes comes into play.  Amy is a hero of mine - wife of a person with diabetes and also the mother of one - and she's really helping people emotionally OWN their diabetes with her gorgeous pump and CGM packs that she sells in the Too Sweet Boutique.  Amy agreed to chat with me, and I'm thrilled to be sharing her inspiring story and beautiful designs.

Kerri:  Hi Amy!  Thank you so much for taking the time to speak with me today.  I’m really excited to help share your fantastic work with the SUM readers.  I also know that you have more than one person with diabetes in your family – can you share your story? 

Amy Holmes:  Thank you so much for the invite Kerri! I am honored to do it!  Yes, diabetes has always been part of my life. I lost my father to type 1 when I was five, which obviously had a huge impact on my childhood. However, it wasn’t until my husband was diagnosed several years into our marriage that I really lived with diabetes.

His diagnosis with type 1 at age 26 was a complete shocker to both of us. Watching the love of my life deal with the diagnosis was both painful and inspiring. One day he was invincible, and the next he was at the mercy of insulin and relentless battles with blood sugar. It was hard, but within a year he was pumping and doing amazingly well.  Diabetes was little more than background noise, (ever present and often annoying, but certainly not the star of the show), when we made the decision to have a second child a few years later. Diabetes wasn’t going to stop us!

When our beautiful baby girl was 9 months-old I began to notice her unusual thirst, and was quite simply terrified. She stopped wanting to nurse because she knew she could get more milk from a bottle, and another, and another… Her symptoms were still subtle when we took her to the pediatrician, but her blood sugar was 699 and she was dangerously close to DKA.

Managing a baby with diabetes was a challenge unlike anything we’d ever faced. She started pumping just after her first birthday and with that change we finally had hope that life would be OK again. I knew there was no going back to the forced feeding schedule and 6+ injections she’d been getting daily, we just had to figure out how to keep her pump safely attached to her tiny, wiggly body!

She is now a six year-old pumping princess who has no memory of life without diabetes. It’s bitter-sweet, but until there is a cure, it is my goal to make living with diabetes as Sweet as possible for her.  Both of my “sweeties” amaze and inspire me every single day!

Some of Amy's gorgeous designs

Kerri:  What made you decide to start the fabulous Too Sweet Boutique?  

Amy:  I was already sewing and designing boutique clothing under the name Too Sweet, (in honor of my little D princess), so I decided to tackle our pump pouch problem myself. I wanted a product that was fun and fashionable, but it had to work for us and fit great too! I decided to take the best features of our favorite pouches and combine them with the boutique style we crave. Once we started using them we were in love and I knew that other kids had to have them too! 

Kerri:  So are the items from the Too Sweet Boutique just for little girls?  Or can boys get in on the action?  And are there options for … ahem … grown ups who may want a cool pump or CGM pouch?

Amy:  While most of my customers are little girls, I have options for boys and pumpers of all ages! I’ve made custom items for infants, teens, retirees and athletes all around the world. My husband is a huge fan of my Perfectly Clear pouches for sports. If you use a CGM, that clear screen is your best friend. (It’s my all time favorite feature! Once we went clear, there was no going back!)  I can also create custom belts for Omnipod PDM’s and a variety of CGM receivers.

Kerri:  How can someone order products from you?

Amy:  You can find my Sweet little shop at TooSweetBoutique.net.  All of my items are custom made to order, but you can find lots of pictures and ordering information there.  You can also like TooSweet Boutique on Facebook to keep up with new products and sales.

Kerri:  And what’s next for your growing business? 

Amy:  Kerri, I am super excited to tell you that I have just tackled another one of our style challenged D accessories… our meter bag! I have never found a bag that was just the right size to hold what we really need to carry each day. I have designed an adorable little bag that holds exactly what most people with D need to keep with them, and it’s CUTE!   I am just beginning the production process, so it’s not available yet, but it will be soon, and it’s going to be Sweet!!

As Too Sweet Boutique continues to grow I hope to provide more fun, functional, fashionable options for children and adults living with diabetes. You are all amazing and inspiring, and your diabetes accessories should be too!  Happy Pumping!

[Editor's Note:  Amy's daughter is one of the cutest kids I have ever seen.  And she's got great hair.  :) ]

October 13, 2010

Interview with a Fellow New Mommy: Kim Lyons.

According to her website, Kim Lyons' goal is to "help the world become a healthier place ... physically, mentally, and emotionally."  I can subscribe to that.  Trainer from the Biggest Loser and national fitness guru, Kim gave birth to her son, Jake, about four months ago.  And I can attest to the fact that the girl has gotten herself back into shape right quick - I met up with her at the TCOYD conference in Providence a few weeks ago and she looks like she bounced right back.

Kim agreed to chat with me about fitness, pregnancy weight gain, and coming back from the post-partum body changes.  (And now I feel even more inspired to get my rear end in gear!)

*   *   *

Kerri:  As a prominent figure in the fitness world, how did you deal with the weight gain of pregnancy, both physically and emotionally?

Kim, pregnant.Kim Lyons:  As a trainer, I have a simple straight forward approach, No Excuses, period. I have heard them all, too tired, not enough time, this or that hurts, no money, etc. Bottom line, I will find time in your schedule, I will energize you with exercise, I will work around injuries, and I will give you thousands of exercise you can do for free with out a gym! I simply do not entertain any excuses.

When I found out I was pregnant, I was so excited. It not only explained my odd cravings and complete zombie state of mind but it explained my “less then aggressive” workouts. I’ve spent 15 years learning to listen to my body and for weeks my body had been screaming “slow down”. There really was no pushing through. I’ve been tired for workouts many times before and managed to still get in an intense workout. This was different and as soon as I saw the results on that little white stick it became so clear.

I never thought of pregnancy as a challenge. It was going to be simple, I’d just go about my normal routine and I’d have a little basketball belly.  All of the sudden, my hormones were a bit off (I cried about folding laundry), the scale went nuts (I gained 10lbs, not 3lb, in the first trimester), and the comfort level of my bed took on a whole new meaning! I quickly realized that, more then ever, I was going to have to crack down with my own motto and make a no excuse plan for myself.

That plan included mentally accepting the massive changes that were going on in my body and coming up with an exercise and nutrition game plan! My workouts needed to be short, effective, and accommodate for the changes in my body. My nutrition was no longer about maintaining a six pack, instead, it was about supporting the little life inside me. My little bionic body was no longer selfishly mine to beat up with daily workouts and a strict low calorie diet!

I truly thought it was going to be easy, but the truth is, there were many times when I looked in the mirror and cried. I felt so guilty for being so vain about my six pack, perfectly sculpted arms, and tight little buns. I have spent the last 15 years of my life studying the human body and how to get anyone, big or small, into top shape. For the fist time in my life, I was faced with a new challenges, I wasn’t in 100% control of my body. It wasn’t all about me anymore!

My vision of just gaining a little basketball belly was replaced by the mirror image of my arms smoothing out, my hips widening, and my boobs taking on a life of their own! The closet became my worst nightmare!
The good news is that as I settled into the pregnancy, I took on a new frame of mind. I decided to really embrace the daily changes going on in my body and follow my own no excuse approach. This workout includes a few of my favorite moves to help you keep your body in shape during your pregnancy, prepare your muscles for lifting and carrying your new little baby, and having a great and healthy body in the years to follow.
Most challenging…

The most challenging part of exercising while I was pregnant was the extra weight and the lack of flexibility in my mid section. Everything became awkward and difficult, even simple daily movements. Reaching down to pick something up no longer was a simple thoughtless movement, instead I had to think, wide squat-like stance, toes out, not to fast, sit back in the heals, and keep the abs tight as possible to support the back.
I gained 30 lbs during my pregnancy and I felt everyone of them as I walked up and down the two flights of stairs in my house. Walking became great exercise where before I never huffed or puffed or broke a sweat on a daily walk.

Most enjoyable part was that during my pregnancy I took the time to stop and smell more roses! Literally!! Usually I exercise with such focus and intensity that I don’t take time to slow down and smell the flowers. While I was pregnant I went on walks with friends, spent quite days in my home doing these exercises between errands and emails, and even worked out at the same level as some of my beginner clients. Once I set my mind to except slowing down, I really enjoyed it!
 
Kerri:  Babies are a lot of work, and taking care of them takes up a good chunk of our days.  As a Kim Lyons and her little kidlet, Jakenew mom, did you find it difficult to work in working out into your schedule?  What helped you get back into shape so quickly?

Kim Lyons:  I do find it challenging, new moms don’t have much time for themselves and when there is some down time sleep and other “to-do’s” tend to fill the time. However, at the end of the day we make time for the things that are most important and that is exactly what I had to do. I allowed myself to be flexible with when I got in my workouts, but I didn’t allow myself to skip them. I began slowly with 30 mins min exercise a day. Some days I was able to get in a bit more. I think a lot of women feel guilty asking someone to help out while they go work out, but it’s so important for mom’s to make time to exercise. It cannot only help with self esteem, but it can also help women avoid post partum depression.

Of course being in the public eye and returning back to work about a month after having Jake was a huge incentive! I have had so many women over the years say “wait until you have kids” or “you obviously don’t have kids” and I wanted to prove to everyone that you can do it. I had someone say that to me at a conference not long ago and I was so happy to say, “Actually, I have a 3 month old baby.”  Her face was priceless. It’s not easy, but I don’t except excuses from my clients and I sure the heck wasn’t going to allow myself to make excuses!
 
Kerri:  My husband and I are excited to make playing and running around a part of our daughter's upbringing.  How do you plan to instill the values of physical fitness and regular exercise into the life of your child?


Kim Lyons:  I want Jake to see exercise as fun. I grew up playing outside, climbing trees, playing tag, and playing sports. Now it seems kids just sit around and watch TV, sit on the computer, or play video games. Our food is getting worse and our kids are becoming less active. I don’t care if Jake is a super athlete, but I’m going to make sure he finds something active that he loves. I’ll expose him to martial arts, gymnastics, soccer, football, baseball, and anything else he wants to “play”! We’ll spend weekends and free time riding bikes and going for hikes instead of sitting around eating fast food!! Kids learn everything from the examples their parents set!
 
Kerri:  What advice do you have for someone who is looking to achieve a new level of fitness?  Any inspirational tips or suggestions on how to make fitness a priority?

Kim Lyons:  Achieving a new level of fitness requires total commitment and consistency. It’s important to find things that you enjoy whether it’s in a gym or not. It’s also important to have a support system. Find friends to help hold you accountable, put dates on the calendar, and set goals!
 
Kerri:  You work closely with the diabetes community, with appearances at the TCOYD conferences and other diabetes outreach events.  What made you get involved in the diabetes community?


Kim Lyons:  While working on The Biggest Loser I saw the impact that exercise and proper nutrition can have on people with diabetes. However, most people that have diabetes or are pre diabetic go to the doctor not to a trainer! Don’t get me wrong, they need to go to the doctor, but it is a trainer that can help get these people moving and eating properly. I saw a huge need for some help in the diabetic community and I have really embraced them. I am so passionate about helping people live healthier, happier lives.
 
Kerri:  What kind of difference are you looking to make in this community?


Kim Lyons:  I want people to see that diabetes is not the end of the world! With proper exercise and nutrition it is totally manageable. My goal is to help educate people about the common complications of diabetes, primarily pDPN [diabetic nerve pain].  pDPN can be very painful and many people give up on exercising. However there are so many ways to treat pDPN and exercises that they can do. I’m involved with the “Take the Next Step” campaign and travel around showing people these exercises.  You can also see them on line and read all about pDPN at www.diabetespainhelp.com
 
Kerri:  Through your experiences with the diabetes community, have you learned anything about this disease that surprised you or changed your previous perceptions?

Kim Lyons:  It surprises me how many people with diabetes don’t take care of themselves. We only get one body and one life and I just want to help people learn how to manage there diabetes and get back to doing things they love. There is so much information out there, it can be overwhelming, but at the end of the day if they take one step in the right direction it could save their lives.

Kerri:  Any other thoughts you'd like to add?

Kim Lyons:  I have an incredible on line training website that embraces all elements of living a healthier lifestyle. We help everyone from all over the world and have an incredibly support group of trainers, challenges, retreats, prizes, live chats, and a daily video blog from me! It’s really fun and amazing to see how much people love it and are achieving incredible results. The site is www.FastTrackToFatloss.com

*   *   *

Thanks, Kim, for both the information and the inspiration.  And your kid is a cutie - does he like older women?  Like almost six month olds

June 07, 2010

Ginger Vieira: PWD, Power Lifter, and Life Coach.

Ginger Vieira is a familiar face in the diabetes community, with her work at the HealthCentral DiabeTeens community and her incredible ability to lift ... well, just about anything.  (Girl is a record-holding power lifter.  So cool!!)  Ginger has a realistic, yet upbeat, attitude about life with diabetes, and now she's using her knowledge and insight to help others live better lives with diabetes. 

She's started a new business as a life coach - Living in Progress - for people with diabetes or any other chronic illness, and she's offered to share some of her story here on SUM. 

*   *   *

Kerri:  What's your diabetes story?

Ginger is awesome.Ginger:  I’ve lived with type 1 diabetes and celiac disease for 11 years. I actually diagnosed myself at a school health fair in the 7th grade. I told my parents and a couple of friends, “I think I have that thing called diabetes…” and no one believed me for like a week! You just don’t think it will happen to you or the people you love.

When I was diagnosed, I cried and cried, threw myself a little pity party, but then I remember thinking about all of my friends and my family, and the challenges they face every day. I realized diabetes is just one of my challenges, and everybody has something. If I know anything for sure about diabetes, it’s that I cannot be the “Perfect Diabetic,” but I know try my best.

Kerri:  How did you get involved with the diabetes online crew?

Ginger:  I’ve been a camp counselor for teens with diabetes for maybe four or five years now, and there’s nothing like putting a group of teens with diabetes in the same room…everyone just feels so relieved to be in a space where they don’t have to explain their burdens and their challenges. Everyone in that room knows what it feels like to live with diabetes. I wanted to help create a space like that on the internet so those kids had somewhere to go when camp was over. That’s how HealthCentral.com eventually developed DiabeTeens.

Kerri:  You're a record-holding power lifter, (which makes you the most badass diabetic I know).  What made you decide to tackle that challenging goal?

Ginger:  Well, I grew up with 3 brothers! But really, I never intended to set any records in powerlifting! I started learning more about weightlifting with a trainer I hired about two years ago because I wanted to get in better shape, and I enjoyed it so much that I just really dedicated myself to it. After a year of consistent weightlifting, I had more than doubled my strength, and someone suggested that my trainer and I look into powerlifting. I fell in love with it! I feel like my body was made to pick up really, really heavy stuff.

Balancing diabetes around powerlifting was absolutely challenging and I spent my first year of training and competing really trying to figure how everything impacts my blood sugars. I’ve spent a lot of time in the past couple years trying to learn about this disease through a medical perspective, reading about the physiology of diabetes the way a doctor would. Trying to keep my blood sugar steady during a competition was probably the biggest challenge, but by the fourth one I finally had figured out all the science and physiology of what was going on in body and how to adjust my insulin doses accordingly.

But I never went into powerlifting thinking I was capable of setting records. I was soooo nervous at my first event. I just went into all of it simply thinking, “I really love doing this, and I’m going to do the best I can.”

Kerri:  What inspires you to pursue good health?

Ginger:  The obvious answer is, “my diabetes,” but it’s so much more complicated than that. In the past several years I really decided I wanted to be healthy. When I told my endocrinologist about two years ago that I was looking into powerlifting, he actually rolled his eyes at me and laughed! I was furious!

Diabetes makes health more challenging, for sure, but it’s not impossible. And the idea of someone telling me I can’t be healthy because I have diabetes…well, that makes me angry. Angry enough to make it a huge focus of my day. Do I eat perfectly every day? No. Are my blood sugars always perfect? No. But I try really, really hard to take care of myself. If you want something, go get it. Period.

And now you are starting your own business as a health and chronic illness life coach.  What alerted you to that gap in resources, and how will your service help people with diabetes?
I’ve wanted to start something like www.living-in-progress.com for so long, and finally everything’s come together.

It’s easy to go to a doctor, get a prescription, a diet plan and be sent off to follow the rules. But life is so much more complicated than that! And managing an illness day in and day out is so much bigger than just taking your medicine. It impacts every single part of your life! So how can we expect to get everything we need from a doctor?

I strongly believe that the way we think about these challenges in our life is what will really end up shaping how well we take care of them. We need more than just a list of foods we should and shouldn’t eat, we need support in making those changes. Long before you start the diet or the new diabetes management plan, you need an opportunity to look at your thinking, at your habits, at what you really want for yourself.

I can help people through that process.  

Kerri:  Where did you get your professional training?

Ginger:  My training is actually from a cognition-based program (similar to cognitive therapy) that was founded by David Rock. He is the corporate coach for a number of large companies, and he wrote “Your Brain At Work,” a guide that applies the latest in neuroscience research to help individuals overcome challenges in their everyday lives. I’ll be certified in the International Coach Federation in late 2010.

To make a very long story short, I’ve been trained in a method of conversation that allows me to help you look at the way you think and then help you develop new ways of thinking to get on a more individualized path towards your goals. I don’t want to say people can’t try to find their own path on their own, but if they’ve tried and haven’t been happy with their progress, or if they’re interested in looking at what they haven’t tried yet and looking at what their own brains haven’t thought about yet, that’s where I come in.

I knew from the details of the program that I could easily add my own twists and apply it to working with people who live with health and chronic illness challenges. In my training, my classmates and I actually coached each other through our own life goals, so the program has changed and shaped my life in many positive ways already.

Kerri:  Diabetes is a full-time disease and can really take its toll on a person's emotional well-being.  How much will life coaching affect that aspect of diabetes management?


Ginger:  HUGELY! And in fact, that is where we start. Instead of just talking about insulin and blood sugars and diets, we slow down and really look at where you are right now. Instead of jumping right into a diet or a strict plan to check your blood sugar this many times a day, we look at the way you’re currently thinking about your diabetes or how you currently think about the food you eat. We look at where you want to be. And what you haven’t tried yet to get there.

The process is awesome, and I really believe in its ability to help you look at yourself before diving into action. For example, when we want to lose weight, most of us find a diet on the internet or from a friend, and try to follow it perfectly the very next day. Sometimes we’re missing all the knowledge we need, or sometimes the diet is really severe and hard to follow for long. Sometimes, also, the diet may be great but we’re asking ourselves to change our habits all of sudden, to change the way we think just like that **POOF!**

And people are much more complicated than that. There’s so much more to changing a habit than simply deciding to change it all of a sudden. That might work for some people, but for most, our habits have really been wired into us and into the way we think. So in this coaching process, we start by looking at how you think and feel about this major, major part of your life.

Kerri:  How can someone get started with your services and find out more details?

Ginger:  You can schedule a FREE, confidential, 30-minute consult with me by emailing ginger@living-in-progress.com or calling me at 802-497-1854. Coaching can be done over the phone just as effectively as face-to-face, so it doesn’t matter where you live. All you need is a little bit of courage and the desire to improve your life.

*   *   *

Thanks for hanging out with me today, Ginger!

July 28, 2009

Charlie and the Twitter Factory.

I have a lot to catch up on, including a post about Lee Ann and I braving the Indiana highways and then the BlogHer conference, but let me just say this first:  I like Charlie Kimball.  I like him as a person, as a fellow diabetes advocate, and as a race car driver because, really, that is just damn cool.  So there's my big disclaimer:  I like Charlie.  (I even have a post ready to write about meeting up with him at Friends for Life a few weeks ago.)

So I do not like to see Charlie, the guy, under such attack for the @racewithinsulin Twitter account.  Plenty of bloggers are up in arms about the Novo/Kimball union and its steps into social media, like John Mack from the Pharma Marketing Blog.  I felt a little protective of my fellow PWD, which prompted me to do a little investigating.  I wanted to know how Novo, the company, feels about this whole Twitter/marketing/Pharma thing.

So I asked them.

Charlie Kimball and Kerri Sparling.  Dressed almost identically.  Weird.

Ambre Morley, Associate Director of Product Communications at Novo Nordisk and I met at the Friends for Life conference, and I told her that I was concerned about the backlash towards Charlie and the branded Twitter account.  "I have a ton of questions, and I know some of the PR people who are questioning the account might do well to hear the answers.  Like why the account doesn't follow anyone.  And what's the deal with those blatantly branded Tweets?"

She agreed to answer my questions.  And since Novo is the first I can think of to jump in with a pharma-branded Twitter account with a "real face," I wanted to hear the answers.  (Note:  All links to pages within the answers were added by me.)

Kerri:   Charlie is a valued member of the diabetes community, so I can understand why you guys chose to partner with him. But what made you decide to start a Twitter acct?  

Novo:  When we decided to partner with Charlie, we explored a number of different opportunities. He was already "tweeting" personally, however, when he asked about tweeting about our partnership, which includes the insulin he takes everyday, Levemir and NovoLog, we knew had to figure out a way to do it right. We didn't think it was right to ask him to put the prescribing information on his page and monitor every time he tweeted about diabetes. So we created a new account that we could ensure met all regulatory guidelines. Why Twitter? He was already doing it, so we wanted to create something that would easily fit into Charlie's lifestyle.
 
Kerri:  Why are Charlie's personal Tweets and his Levemir Tweets exactly the same?  
 
Novo:  It's important to understand that Charlie does all of the tweeting, both on his personal page and on the Novo Nordisk Race with Insulin page. It's up to him. They aren't always exactly the same, but where convenient and appropriate, he uses the same tweets, as it's probably easier to copy and paste. There are times when the tweets are different.
 
Kerri:  Does Charlie write the Levemir Tweets or is there an editorial vetting proces? Can you explain the thoughts behind the "branded" Tweets?  
 
Novo:  Charlie writes all of the tweets, including the Levemir and NovoLog branded tweets.  We provided him with instruction for how to tweet about the brands and comply with pharmaceutical regulations. So, anytime he tweets the words Levemir or NovoLog, a link to the product prescribing information has to be included.
 
The reason? Take a look at the page from your computer. You see the patient safety information on the left, along with a link to novonordiskcare.com on the right, which contains all of the prescribing and other important information. The challenge is, because the majority of Twitter users read and update their accounts from mobile devices, we knew most people would not see that information if Charlie wrote a tweet. That's why the prescribing information is there. It's required. It's similar to when a company does any stand-alone promotion of a product, that information has to be there.
 
More importantly, it's important to understand that the branded tweets aren't random. Charlie takes Levemir and NovoLog, so when he decides to tweet that he just took his insulin, he really just did. We don't believe a pharmaceutical company has tried to do branded tweets before, much less with a spokesperson who takes the insulin. But we're still learning and trying to figure it out. It's been a fun and definitely interesting time.  
 
Kerri:  Why doesn't the @racewithinsulin Twitter acct follow or reply to anyone? What kind of regulations must be in place for a Twitter acct of this kind?  
 
Novo:  While Charlie is the face of Race with Insulin, it is a corporate account for Novo Nordisk.  At this time, we aren't able to follow anyone, as pharmaceutical usage of social media is very regulated and we want to ensure we do it right. This is just the first phase and as we grow and learn, hopefully we will be able to follow people in the future. We are also open to suggestion.

After speaking to you, we took your advice and set up an e-mail address for the page. (Editor's Note:  I suggested that the account would seem a bit more accessible if they, at the very least, had some contact information.)  You should see an image update in the next week with the new address. But as I know you know, social media moves in real time and we haven't quite caught up to that speed in pharma. We're making baby steps but we're trying to stay in the race.
 
Kerri:  We know you guys are breaking new ground with this Twitter account, so what should we expect as part of your growing pains?  
 
Novo:  We're still learning. We want to do a lot, but we also understand that the pharmaceutical industry is the most heavily regulated in this country. We won't be able to do things as easily as say computer or food companies, but you have our commitment that we do plan to try to engage. Stay tuned.  
 
Kerri:  How has Novo felt about the blog backlash to @racewithinsulin, and how has Novo moved to protect themselves and Charlie?  
 
Novo:  If no one talks about what you do, you probably haven't made much of an impact. That said, it would be nice if the talk was all positive and more importantly, true. We encourage people to ask questions and give us an opportunity answer. We're pretty transparent about our challenges and open to discussion about any ideas to make it better. There were some false assumptions gaining traction, but that's also the nature of this business. You can never please everyone, but you can only hope that social media will adopt some of the principals [sic] of traditional journalism and report the facts, before making assumptions. We're working to move quicker to respond but also encouraging anyone to just ask. As for Charlie, he has been great. He's in a profession where he already has a lot of attention on him and is working with us to help make the page a success.

Kerri:  What do you want the Twitter community to understand about the aims of @racewithinsulin?
 
Novo:  We are very happy to be working with Charlie and wanted to reach as many people as possible. Twitter was an application that Charlie was already using and we wanted to find a way where he could continue to do so and incorporate our relationship.

It's still new and we're just getting started, but we hope to continue to find new, innovative ways to continue to reach everyone with his powerful message that diabetes does NOT slow him down!

*   *   *

I'm glad Novo went out on a limb and dove into the social media space, and I'm also glad that they agreed to answer my questions.  Thanks, Ambre!  What are your thoughts about Pharma in the social networking space?  Don't just say "Hey, they're doing it wrong!"  If you think it's so wrong, what would make it right? 

April 06, 2009

Bertalan Meskó: Of Genetics and Johnny Cash

Berci Mesko:  The Guy 2.0When it comes to Health 2.0, Web 2.0, and other Stuff 2.0, Bertalan Meskó is The Guy 2.0.  Berci and I have been bantering back and forth for the better part of the last two years, and I'm continually impressed by his dedication to improvement the landscape of health online and also his ability to be a normal guy. 

Kerri:  Berci, you've been a star in the medical blogging community forever (and a friend of mine for several years now), but many patient bloggers may not be familiar with your work.  Can you tell us a little about yourself, on a personal level?

Berci:  You're the first one who didn't start with a question about web 2.0 and medicine. So I will graduate from medical school in Hungary this August, then I plan to start PhD training in genetics because I've been dreaming about becoming a geneticist for almost 18 years now. But in my second life, I work online and try to help patients, medical professionals how to enter the web 2.0 world. That's why I've been running Scienceroll for 2 years and I also launched the first web 2.0 guidance service at Webicina. This service is totally free for patients. Anyway, I love playing football, squash, I'm a movie fanatic and try to learn to play the guitar in order to sing Johnny Cash songs properly.

Kerri:  What is ScienceRoll and what made you start blogging?

Berci:  Scienceroll is a medical blog where I focus on personalized genetics, which is my research topic, and the role of web 2.0 in the future of medicine. I launched this blog because I wanted to share my thoughts on science news and articles with people from around the world. Later it turned out it became my best channel so people with the same interest could find me easily and invited me to give presentations at several conferences and beautiful places (e.g. University of Yale or the centre of World Health Organization). Actually, I can travel a lot due to my work on Scienceroll so I feel quite lucky to be involved in the health 2.0 movement.

Kerri: What is your role in Health and Medicine 2.0?

Berci:  I feel I'm somewhere between medical professionals and e-patients. I think my job is to help them find reliable medical resources and useful web 2.0 tools from quality medical podcasts to educational Second Life sites. Through Scienceroll and Webicina, I really hope I can provide doctors and patients with tips on how to be productive online, which medical blogs to read and which medical communities to join. To achieve my aims, I created free packages for patients such as the Diabetes 2.0 or Depression 2.0 package in which I list the best blogs, blog carnivals, wikis, podcasts and many other web 2.0 tools focusing on a specific medical condition.Diabetes 2.0 package on Webicina

Kerri:  How can patients and doctors use the web to their collective advantage?

Berci:  Doctors can save time and effort by using RSS so they can keep themselves up-to-date in their fields of interest quite easily. Following hundreds of medical journals and websites takes only a few minutes a day. They should also build an online image for themselves as patients tend to do a search for the name of their doctors in search engines. So their practices should be represented online properly.

Patients can find support information about their medical conditions, or can find doctors via the internet. They can meet each other virtually in Second Life, or share their health stories through community sites. I could also mention the personal health records systems that are also going to revolutionize healthcare.

Kerri:  How is it that you are in your early 20's and yet one of the most influential health bloggers in the (dare I say it?) world? What's the key to achieving success as a medical blogger, in your opinion?


Berci:  I have 3-rules: openness, consistency and commitment. You have to be open to new things, that's why I try to answer all the e-mails I receive. Consistency is important, because if you blog regularly, readers will come back to check your content. Commitment is the No.1 rule as if you believe in what you write about, sooner or later, it will work. But to be honest, I think I spend too much time online (mostly at night) so I can be involved in several different projects from Wikipedia through medical blogging/microblogging to organizing medical events in Second Life.

Kerri: What do you see as the future of health and medicine on the web?

Berci:  I believe e-patients will change the way medicine is practiced and healthcare is delivered. E-patients are patients who find information online, want to communicate with their doctors via webcam or e-mail, blog about their health or just share their stories with other patients dealing with the same medical problems.

According to Pew Internet Research, the number of e-patients is exponentially growing, while the number of web-savvy doctors is not, so there will be a huge gap. I try to close this gap by launching the first university credit course focusing on web 2.0 and medicine for medical students. Now it's in the second semester and I hope no students in Debrecen will graduate in 5 years without finishing this course.

Today's physicians and medical students must meet the expectations of e-patients whether they are open to it or not.

Kerri: I know you don't just sit around all day banging away on your computer keyboard - what else do you do, besides shape the medical blogosphere?

Berci:  From morning until the afternoon, I do clinical rotation at local clinics as a part of my last year duties in medschool. In the afternoon, I spend all of my spare time in the genetics lab I've been working in for 2 years. I hope I can publish my research findings this year (my thesis: gene expression patterns of chronic inflammatory diseases). I'm a sport-fan and I like being with my friends so I try to live as normal and full life as possible.

Kerri:  Thanks, Berci!!  See you for tea sometime this fall.  :)

April 01, 2009

Charlie Kimball: Can I Drive Your Car?

My father taught me how to drive and I distinctly remember being afraid to go above 25 mph.

"Kerri, you need to speed up," my father warned as I crawled along the road, passed by angry drivers who were in a hurry. 

"Dad, I'm scared."  I hugged the white line in my old Volvo, chugging along.  But I eased my foot against the gas pedal and pushed a bit.  Then a bit more.  Then I hit 40 mph and felt like I was traveling at warp speed.  And ever since, I've wanted to drive a race car.

So imagine my surprise when I met Charlie Kimball, race car driver and type 1 diabetic, at last year's World Diabetes Day event in NYC.  Outwardly, I said, "Oh, it's nice to meet you!" 

Inside, I was yelling, "HEY!  CAN I DRIVE YOUR CAR!" 

Charlie Kimball and Kerri Sparling

Kerri:  Charlie, you're recently diagnosed, right?  Tell us about your diabetes diagnosis and how that all went down.

Charlie:  October 17, 2007, I was in England and went to the doctor in Witney (near Oxford) for a skin rash.  After he had given me some cream to clear up the rash, he asked if there was anything else going in with my health.  In my high glucose addled brain, I nearly didn’t say anything- the typical mid-20’s guy response, “Nope, nothings wrong. I’m 10 feet tall and bullet-proof.” Then I said well I have been kind of thirsty lately. To which he responded, "Lost any weight?" "Maybe a little..." (thinking I had been training and eating better than normal). Jumped on the scales and was down 25 pounds from normal. I had gone from 10%-6% body fat and was so dehydrated my lips were cracked and infected.  He drew blood to confirm, but was convinced I has type 1 diabetes.  I didn’t know what that was. I thought only old people got that!  Boy was I ignorant! I spent the whole next day at OCDEM (Oxford Center for Diabetes, Endocrinology and Metabolism) at the Churchill Hospital in Oxford and my ‘diabetes’ life began.

Kerri: How was your learning curve?  Were you overwhelmed?  Pretty chill?  A mix of both?

Charlie:  My learning curve was pretty steep but I definitely pushed hard to get on top of it.  From early on, I was pushing my doctors for more information, alternate treatment methods, better insulins, less painful injection methods.  There were moments when I was so overwhelmed all I could do was sit and shake my head.  Then there were moments of strength when I was determined to ‘beat this thing’ and show it I was still the boss.  As time went by, I found I was having more strong moments and fewer moments of denial, bewilderment and fear.  I gave myself 10-14 days to ‘get over myself’ and get back to being me.  My friends helped with that as they wouldn’t let me get away with feeling sorry for myself either!

Kerri: What is your job and how has diabetes affected how you work every day?


Charlie:  I am a professional Open-Wheeled racing driver.  I have raced on 4 continents and won as far away as New Zealand, Europe and here in the States.  I have competed at speeds up to 185 miles per hour and my passion for motorsports and racing is a huge part of who I am.  Diabetes has affected what I do tremendously.  I remember the moment when I asked the doctor if I could race again soon after diagnosis.  It was a moment where the whole world seemed to stop moving while I waited for the answer.  I almost didn’t want to ask in case the answer wasn’t the one I wanted!  When he said, ‘of course, there is no reason why not,’ my world stopped spinning out of control and righted itself.  Then I had a road to start walking down to get healthy again and get back into a race car.  In racing, I have always sought the best advice I could find and my diabetes care was no different.  I saw Dr. Anne Peters of USC Medical and her educator and nutritionist as soon as I could.  I though I had an idea of what diabetes meant for me and my career, and then I met Dr. Peters, Donna and Meg ... now I am a carb counting machine and diary keeping fiend!

Charlie behind the wheel.


Kerri:  Have you ever had a diabetes emergency behind the wheel?

Charlie:  Luckily, I have never had an emergency behind the wheel.  I have a lot of protocols in place to keep myself from getting into trouble.

Kerri: What kind of tools do you use to manage your diabetes?

Charlie:  I manage my diabetes differently when I am going to be in the race car compared to when I am not.  In the race car, I have a ‘Camelbak’ type drinks bottle full of orange juice or Gatorade with a tube into my helmet.  That way if I am headed towards low, I can drink that and get back to good numbers.  I also use a DexCom Seven Plus to keep track of where I am both in the race car and when in every day life.  I don’t use a pump yet as I am still a baby when it comes to diabetes.

Kerri:  How has diabetes changed your perception of what's "healthy?"


Charlie:  Diabetes has actually made me stop taking my health for granted and become proactive.  Before my diagnosis, I hadn’t had my eyes checked for years and took my license physical for granted.  Now I work hard on my health and my nutrition is better than it ever has been.  I am a better athlete and while I have diabetes, I am probably healthier now than I ever have been in the past.

Kerri: What kind of advice do you have for others who are recently diagnosed with type 1 diabetes in their "grown up years?"

Charlie:  I think that my biggest piece of advice for people diagnosed later in life is not to let diabetes rule your life.  It is a big change, don’t get me wrong, but it is manageable in the long term.  And you are not alone. (If you are reading Kerri’s awesome blog- you probably get that already- but don’t ever forget it!)

Kerri: And Charlie, where can we catch your next race and cheer you on?

Charlie:  My next race is the first of this season and my first race back in the US for 5 years.  I will be racing for Team PBIR at the Honda Grand Prix of St. Petersburg, April 3-5.  And then I will be in my own personal neck of the woods and racing at the Toyota Grand Prix of Long Beach April 17-19th.  You can keep up with me on my website, blog, and Twitter.

Kerri:  Thanks, Charlie!  ... and, um, can I drive your car? 

February 24, 2009

Jay Cutler Says He Likes Blogs.

Jay Cutler plays football and knows a lot about it.  Quarterback for the Denver Broncos, Jay know what all those flags and whistles and snaps and other football terms mean. 

So far, Jay Cutler and I have very little in common.

However, last April, Jay was diagnosed with type 1 diabetes.  

Jay and I now have a whole lot in common.

Jay took a few minutes to talk with me about his diabetes diagnosis, bringing diabetes onto the football field, and his passion for the Inspired by Diabetes campaign.  

Jay Cutler and I have plenty in common now.
 
Kerri: When, and how, were you diagnosed with type 1 diabetes?

Jay: I was diagnosed in April 2008. I knew something was wrong through most of the 2007 season, and I lost about 35 pounds. People said it was the stress of playing in the NFL, but all kinds of things go through your mind, like maybe I have cancer. After six months not feeling well, the doctors diagnosed me with type 1. My blood sugar level was about 550. It was a relief, really. It’s not easy to live with diabetes, but I was glad to know it was something I can manage.

Kerri: Most people with type 1 are diagnosed when they are small children, leaving us with no real sense of "before" and "after."  Do you feel that there is a benefit to being diagnosed as an adult?


Jay: I just can’t imagine what it would be like to be diagnosed as a kid. I visited a children’s hospital in Tampa during Super Bowl week and met a 4-year-old boy who had been diagnosed when he was 1. And I’ve met a lot of other kids who were still young but are really veterans because they were diagnosed at 4, 5, 6 years old. Those are tough kids, and tough parents, to have to deal with this at such a young age.

Kerri: What has been the most challenging part of the "diabetes learning curve"?  Or the easiest part?

Jay: I think the toughest part is that first few weeks, while you’re getting used to taking insulin shots and pricking your fingers so many times every day. The easiest part? There’s nothing easy about diabetes. But I’m lucky to good people around me to help manage every day.

Kerri: How do you manage your diabetes during a game?  Have you had any lows on the field?  Felt affected by highs?

Jay: I usually check my blood sugar four different times, about an hour before the game. I try to stay around 150-160 before the game. In the first half, I’ll test a few times to make sure I’m not getting low. The adrenaline and emotions of the game can make me drop in a hurry, so I try to stay in check. If I’m steady in the first half, I don’t check as often in the second half. I’ve had one time, when we played Kansas City earlier this season, when I felt low during a series on the field, but we always have some Gatorade ready in case I need it.

Kerri: What are you using, technology-wise, to manage your diabetes?  Do you have any interest in an insulin pump?  A continuous glucose monitoring system?

Jay: I tried a pump and a continuous monitoring system right after I was diagnosed, but using the pen just fits better into my line of work and lifestyle.

Kerri: Since you're in the public eye, do you feel you have a responsibility to disclose your diabetes?  Do you feel pressure to be the perfect diabetic?


Jay: I didn’t want to shy away from it at all. I think I can be an inspiration for people dealing with diabetes, especially kids. I think it’s important to let kids know they can achieve their goals and dreams, and that even though having diabetes is tough, it’s possible to do what you want to do in life. That’s why I wanted to team up with Lilly on the Inspired by Diabetes campaign. But it is tough, and I know I’m not going to be perfect. I’m going to have my ups and downs too, just like everybody else.

Kerri: You're probably used to being interviewed by ESPN junkies and football fans, but now kids with diabetes specifically are looking up to you.  What kind of message do you have for kids in the diabetes community?


Jay: I love the message of the Inspired by Diabetes contest being run by Lilly. First, we want to hear the stories of people affected by diabetes, especially kids, to hear how they’re dealing with it. A lot of people know my story, but all these stories can be inspiring to other people. There’s also a great message behind the campaign, that by telling your story you can help other kids with diabetes through the donations Lilly is making to the ADA for diabetes camps. It’s a great cause with a great message.

Kerri: Since you are new to diabetes - less than a year since your diagnosis - what kind of message do you want the diabetes community to offer you?  Do you turn to things like blogs, message boards, and other online resources for that sense of "community?"

Jay: When I was diagnosed, I noticed there’s a lot of information on the internet, but not as many personal stories. I think blogs are a great forum for that.

Kerri:  Thanks, Jay, for being part of the community.

September 10, 2008

Diabetes For The Day: Third Edition.

I've said it before, but I must say it again:  my co-workers are a rare breed.  They are funny, brilliant, and they actually care about making a difference in the lives of people with diabetes.  Another co-worker took the Diabetes For The Day challenge, and wrote about what it was like to test all day and wear the newest version of the "faux pump."  (This one was a definite upgrade from the Kool-aid box of yester-post.  We used a Freestyle flash meter as "the pump" and taped an infusion set, sans needle, to the back of it.)  Here's her take on a day with diabetes.

Meter, with infusion set attached, serves as a pump for our experiment.

Kerri:  You wore a “pump” and tested your blood sugar throughout your day with diabetes.  How did you feel about these devices?

Co-Worker:  At first I thought it was kind of fun to know what my blood sugar was, but after maybe the second prick, the novelty wore off. It hurt and seeing my numbers go up and down freaked me out. The pump was a huge pain. At work it wasn’t embarrassing but outside of the office, I felt like everyone saw it and wondered about me.

Kerri:  You wore the pump all day and overnight.  Was it comfortable?  How was sleeping with something attached?  Showering?  Was it difficult to dress for?  Did you almost drop it into the toilet at any point?  ;)  

CW:  It was relatively comfortable, comfortable enough that I would forget about it until I caught the tube on something and felt the yank on my “infusion point”. I was nervous about sleeping with it since I don’t own pajama bottoms with pockets but I was able to tuck it under my pillow. I slept fine but woke up with the pump halfway across the bed. I wore pants with pockets the day I had my pump so I didn’t have to worry about where I would stick it. However, I wear a lot of dresses and I could see that being a big pain. I didn’t drop it in the toilet but only because I was paranoid that I would.

The infusion set, without the needle inserted.
My co-workers put up with a lot from me, and they even wear fake pumps to help them understand.

Kerri:  Did physical evidence of diabetes (i.e. wearing the pump) make you feel self-conscious?

CW:  At work, I felt normal, even proud of what I was doing. However, the second I left, I felt awkward, especially when a friend nearly pulled it out and I had to explain what it was and what I was doing. 

Kerri:  How did testing your blood sugar affect the way you thought about food?

CW:  It made me aware of how many carbs I eat and that it is probably contributing to the fact that my blood sugar was all over the place. It also made me less likely to snack because I wanted to avoid testing.  I remember thinking, "A piece of candy is already in my mouth before I think about testing. Did I just mess up? Man, this is annoying. Diabetes sucks."

Kerri:  Did you find the blood sugar testing to be painful?  How comfortable were you with the process?

CW:  After the first or second time, I started to really wince every time I had to test. The sharp pain only lasts a moment but it made my fingers sensitive and bruised. I felt pretty comfortable with the process because I’ve tested before and I’m not afraid of blood or needles.

Kerri:  How did the blood glucose numbers make you feel? Did any of your results make you raise an eyebrow?


CW:  My blood glucose numbers made me feel anxious. I was like a roller coaster, relatively high and then a few hours later, relatively low. If I hadn’t had Kerri around to reassure me, I would have freaked out.  After a bagel with cream cheese and an iced coffee with Splenda, two hours later I was at 141. I panicked. 141, that’s bad! (Right, except you have a pancreas, give it a second woman). Kerri assured me that I was fine. 

(Editor's note:  Her blood sugars hit highs of 140 mg/dl after a high carb lunch.  So "high" by her standards was a little different than my highs.)

Kerri:  Do you feel as though you have a better idea of what life with diabetes is like?  What else would you want to know?  What are you grateful for not knowing?

CW:  I still don’t think I have a clue what it must be like. I did it for one day. I didn’t change my diet, I didn’t have to take action when my numbers went out of their normal range. I can’t imagine having to test every day. Given that experience, I would rather not know any more.

Kerri:  Did this experiment make you appreciate your health any more?  Less?


CW:  It made me appreciate my health tremendously. That my body functions and regulates things on its own is a blessing most people don’t take notice of.

Kerri:  Do you think other people who are close to diabetes, but aren’t diabetic themselves, should spend a day as a diabetic?


CW:  I think everyone should.

Kerri:  Anything else you want to add?


CW:  Kerri is pretty awesome. (Editor's note:  YAY!)  And diabetes sucks.  (Editor again:  Word.)

August 04, 2008

SugarCube Society.

"Just a spoonful of medicine helps the sugar go down" is the tagline for The SugarCube Society, a group of crafters on Esty run by Melody Claussen-Furry.  Her son was diagnosed with type 1 diabetes in 2005, and she and her family decided to start a JDRF walk team to raise money for research.  With all proceeds (minus shop fees) going to the JDRF, it's no wonder that The SugarCube Society is making a difference.  I had the chance to connect with SugarCube Society Coordinator Melody and ask her about the reasons, and mission, for her site.

Kerri:  What inspired you to start the Sugarcube Society?
 
Melody:  In 2005, our son Christian was diagnosed with type 1 diabetes. It was a complete shock. He asked me if he had eaten too much sugar. I explained that it didn't work like that. I played the blame game with myself (didn't I have a diabetic relative somewhere in my lineage? Or maybe it was because I had undiagnosed gestational while I was pregnant with him? Or maybe it was giving him whole milk at 11 1/2 months old?) After spending three days in the PICU with him, the reality set in and in turn, so did acceptance. We immediately focused on learning how to help him manage his disease. We were totally overwhelmed by all the information, but even more so, by watching our son administer his first dose of insulin via a syringe. He was so tough about it. I think he cried more about wearing the hospital gown than he did from the pain of the shot.
 
He's had a lot of growing pains caused by managing his diabetes. The fear of short-term and long-term complications was the catalyst for us to fundraise for the cure. We do the JDRF Walk to Cure Diabetes every year and will continue to until there's a cure, but it didn't seem like enough. So, I decided to draw on something I do to raise money. I make and sell crafts and jewelry online on Etsy (an independent crafters' marketplace). I decided to open a shop specifically with the intentions of donating all the proceeds to JDRF. I first listed some items I created, but then I called on my crafting sisters from the Sacramento Craft Mafia, who quickly gave from their own shops for the cause. We even had a Sacramento Craft Mafia team for the Walk. It was awesome - we brought in $1200!

I then called on the greater independent crafting community, which is HUGE. I posted the call for donations on forums and soon enough, people were blogging about the shop and sending in donations and even buying the goods! We've had donors from as far away as Australia. I'm very lucky to belong to a part of a creative and generous collective of crafters!

Items from The SugarCube Society
 
Kerri:  What kind of items do you sell?  Are there any special stories behind any specific items?
 
Melody:  We sell anything that is handmade. Currently in the shop we have paper goods, jewelry, buttons, accessories and what we like to call Sugarbabies, which are dolls (some are pincushion dolls) that started as plain white dolls donated by sewing geniuses Loreen Devlin and Lhay Browning Thriffiley. I then sent out an email to all my crafty girls asking if they'd like to adopt a Sugarbaby (which meant, take a doll home and embellish it at their leisure with the ultimate goal of selling them in the Sugarcube Society shop). Within an hour, I had all but two out of 14 babies adopted! Two of the babies have already sold! More are on their way to the shop. I'm still working on mine, which is a little daunting. The girls in my group make it look so easy. They're craft studs!
 
I also had to opportunity to collaborate with graphic designer/illustrator Kate Dana Detwiler of Kukaru.com to create buttons that take a poke at diabetes. She did a great job with the design. They look fabulous! She calls them Sugarbuttons, but on the site they're called the Pins and Needles button pack. We also offer them in magnet form for those who are tired of pin pricks ;)
 
Kerri:  Who are the people behind the Sugarcube Society?
 
Melody:  The crafters who donate their items. The shop wouldn't exist without the generous crafters, most of whom have been touched by diabetes in some way. I'm merely the promotional and shipping and receiving departments.

Kerri:  Thanks, Melody!!

Editor's Note:  To learn more about The SugarCube Society, visit their Etsy store.  And if you have a creative fundraising idea that you want to share, email me

May 08, 2008

Pumps Are Good, M'Kay?

Pumps are good, m'kay?The Associated Press has issued an article about the safety of insulin pumps, claiming that deaths have been linked to insulin pump use.  What's that phrase again?  If it bleeds, it leads?  Our own Scott Strumello, research blogger extraordinaire, has provided a very fine synopsis of the article - you should definitely take a read.  I was contacted by Steve Sabicer, a representative at MiniMed, and had the opportunity to get a little feedback from their camp. 

How does Medtronic respond to the claim that "insulin pumps can be risky and have been linked to injuries and even deaths"?

Medtronic stands behind the many years of clinical evidence that support the benefits of insulin pump therapy in patients of all ages

  • Insulin pump therapy is proven to improve patient outcomes versus multiple daily injections (MDI) with long-acting insulin (glargine).
  • Insulin pump therapy has shown strong results in pediatric patients as young as one year old.
  • Insulin pump use in children and adolescents may be associated with improved glycemic control and improved quality of life, and poses no greater, and possibly less, risk than MDI.
Do you feel that this article could keep doctors and insurance companies from approving the use of insulin pump?

We don't think this will significantly impact physician or insurance company practices moving forward.  The clinical data in support of insulin pumps is very strong.  In fact, Medtronic has noticed that many physicians have proactively come out in support of the therapy in response to this article. That said, we anticipate patients may be concerned because of the lack of context provided by the AP story. Medtronic encourages every patient to speak with their physician before making any decision about insulin pump therapy.

It's important to note that the article conceded that insulin pump therapy is beneficial for adolescents. They only suggested vigilant training and attention by parents and physicians. Medtronic encourages significant parental/physician involvement and we have designed a robust product training protocol to ensure our patients receive optimal instruction on the use and functionality of their insulin pump therapy.

  • We have more than 3,000 certified product trainers
  • Comprehensive online tools (Pump School Online, web-based training modules) for general diabetes information and product specific training
  • Paradigm REAL-Time CD-Rom product training
  • Code and PIE classes

How is Medtronic planning to address this issue with the media?

Medtronic is available for comment and interview to any journalist, and we also encourage them to contact pediatric endocrinologists and patients who have experience with insulin pump therapy.

What can pump users do to show insurance companies and doctors alike that insulin pump therapy should be available to any insulin-dependant diabetic?

As I said before, we don't believe this story will significantly impact physicians or insurers regarding insulin pump therapy. The clinical data in support of insulin pumps is strong.  That said, if patients are having difficulty getting coverage for their insulin pump, they can visit our website for claims information and helpful tools to demonstrate the case of their therapy.

(End of interview)

I've made no secret that I'm a fan of Medtronic's insulin pump line and that I believe pumping insulin has been one of the best decisions I've made for my diabetes management. What makes me craziest about this article is this line:  "There were two possible suicide attempts by teens who gave themselves too much insulin, according to the analysis."  This statement makes it seem like an insulin pump holds a substance far more dangerous than what I injected for over 17 years.  Point is, pumps are not for everyone, but that decision should be made by the diabetic and their caregiver.  I'd hate to see an article like the one from the Associated Press be something that keeps an insurance company from approving use of an insulin pump.

Scott summed it up nicely by saying, "But blaming the pump itself for problems that are not clearly tied to these Adverse Events seems to be irresponsible reporting at its worst."  Hear, hear!

November 08, 2007

Elliott Yamin and Inspired by Diabetes

Six Until Me interview with Elliott Yamin

It's strange, how diabetes makes conversations between strangers easy.  Even when that stranger happens to be Elliott Yamin, American Idol finalist and singer of the Top 20 single "Wait For You."

During our interview, we talked about his type 1 diabetes diagnosis at the age of 16.  "I was feeling ill for about 2 1/2 weeks.  My mom [who has type 2 diabetes] tested my blood sugar and it was high.  This all happened on a Sunday, so we went to the emergency room, where they tested my blood sugar at 870 mg/dl."

Holy crap, 870 mg/dl? 

"So it was an instant change for you and your family, I'm guessing."

"Sort of.  We had a gradual change in diets, but I was rebellious about it.  I had to learn the hard way to take care of myself."

We traded stories about some of the more difficult moments with diabetes.  He talked about being on stage and under the hot lights, then dipping neatly into a low.

"There was a regular Pepsi there, so I grabbed it and drank it down real fast.  I felt better, but it was tough because drinking down all that carbonated soda so fast, I kept burping through the sound checks.  You know?"

I couldn't help but laugh - I'd love the opportunity to burp through a soundcheck.

Elliott spent several years on multiple daily injections and experienced a number of hypoglycemic seizures.  It wasn't until he was 21 years old, when he met a co-worker who was wearing an insulin pump, that he started thinking about pump therapy

"He showed me his pump and how it worked and all that."  He made an appointment with his co-worker's endocrinologist and worked hard to lower his A1C in preparation for the pump.  About four months later, he was hooked up and pumping.

As diabetics often do, we touched upon "a cure."Elliott Yamin

"I want a cure.  Of course I want a cure.  And I think we're getting close.  I'm happy to be able to use my position and my voice to be involved in these great programs and charities.  It would be a sin for me not to do anything [to raise awareness]." 

I agreed.  "Raising awareness is important.  It's good that you're public about your disease, unlike some celebrities."

"Well, it sucks.  Diabetes sucks sometimes."

Finally, a celebrity who acknowledges that it's not an easy condition.  He gets it.  Diabetes can really suck.  Raising awareness and working towards a cure is crucial.

One event that Elliott is involved with is the Inspired by Diabetes campaign.  This campaign asks people with diabetes, as well as their family, friends and healthcare professionals, to express how diabetes has impacted their lives — and share those stories with others around the world.  Elliott will be helping to judge entries in the Inspired by Diabetes Creative Expression Competition and is donating a package of concert tickets and backstage passes for U.S. grand prize winners.

"Dream big," he offered his words of wisdom to the diabetes community, as we ended our phone call.  "Always dream big.  And continue to watch your blood sugars.  It's hard for young people to see how diabetes affects us long-term.  Understand that it's controllable.  We can live long and healthy lives." 

Thanks, Elliott. 

September 05, 2007

Captain Glucose and Meter Boy!

Captain Glucose and Meter Boy

Living with diabetes sometimes requires us to be as vigilant and brave as ... well, superheroes.  Good thing we have Captain Glucose and Meter Boy!  These two heroes, sporting tights and a friendship as tight as Dangermouse and Penfold, are champions of diabetes awareness and are doing their part to educate the public.  I had the pleasure of spending some time with Bill Kirchenbauer (Captain Glucose) and Brad Slaight (Meter Boy).

Captain Glucose and Meter Boy!KERRI:  Captain Glucose and Meter Boy aren’t your average superheroes.  How did this dynamic duo come to be?

CAPTAIN GLUCOSE/BILL KIRCHENBAUER: Since you asked so nicely we’re going to answer your questions as our secret identities…but don’t tell anyone.

METER BOY/BRAD SLAIGHT: Uh, Bill, Kerri has a very successful blogsite which is read by many, many people.

BILL: Oh, well I guess it’s too late now …okay, but make sure to tell them not to tell anyone else. 

BRAD: The characters of Captain Glucose and Meter Boy came about shortly after Bill was diagnosed with Type 2 diabetes. 

BILL: It really caught me off guard.  I went to the doctor because I started having blurry vision. He did some tests…and then I got the news.  Brad has had diabetes for a long time so I called him right away to help me sort things out.

BRAD: Not too long after that, Bill and I decided that we wanted to help other people. We thought the best way to do that was to create these comedic characters as a way to focus on diabetes in an entertaining yet informative way.

BILL: We made them a cross between Batman and Robin and The Incredibles

BRAD: …or as we like to call ourselves The Not So Incredibles

BILL: …it was a way to have some humor along with a serious message. The humor comes from us being well meaning, but somewhat bumbling superheroes. Captain Glucose and Meter Boy have no real powers and despite their good mannered ineptness, succeed at helping others.

KERRI:  Was there a physical fight over who got to be Captain Glucose?  And are the tights a bit itchy?

BILL: The tights are itchy…like right now.

BRAD: You’re wearing your tights now? Under your street clothes?

BILL: Uh…no…I’m just saying. Forget about that; let me answer the part about who goBill Kirchenbauer - Captain Glucose!t to be Captain Glucose. There was no physical fight about it…but if there was I surely would have won. 

BRAD: In your dreams.

BILL: Because it’s a parody of most superhero duos it made sense that I play the role of Captain Glucose. Since Brad is shorter, looks younger....
 
BRAD: ...and has hair! 
 
BILL: …it was only fitting that he play Meter Boy.
  
KERRI:  A little diabetes advocacy goes a long way.  What made you want to be involved in spreading the facts about diabetes?

BILL: Good question. We saw a need and wanted to do something to fill that need.  We’re trying to offer a different approach to those facts than others are doing. Our mission is to Educate, Enlighten, and Entertain people of all ages.

BRAD: We feel that it will take many voices and many different approaches to get the word out and communicate to those who have diabetes, to those that don’t know they have it yet, and to those at risk for getting it in the future. 

BILL: We kind of see Captain Glucose and Meter Boy as characters who might be able to grab the interest of some people where traditional methods might not. We’re hoping that what Smoky the Bear did for fire awareness we can do for diabetes.
 
KERRI:  So you’re not only the superheroes, but you both also have diabetes.  Like the Sy Sperling's of diabetes.  What kind of diabetes do you have, how long ago were you diagnosed, and how do you manage your disease?

BILL: I was diagnosed with Type 2 diabetes about five years ago and currently take Metformin and Brad Slaight - Meter BoyByetta. I’ve slowly but surely been changing my lifestyle and have lost some weight and working on losing more. 

BRAD: I was diagnosed with Type 1 diabetes 23 years ago. My diabetes is managed with Humalog and Lantus…and exercise. To me, exercise to as important as any medication on the market.

BILL: Managing my diabetes is something that I realize is a 24/7 thing. I can’t take a day off from it.

BRAD: Good point…you must have gotten that from me!

BILL: No, I’m pretty sure I invented that.

BRAD: Yeah, right. (to Kerri) We both have really good endos (endocrinologists) who have no doubt made that point to us many many times. Having a doctor you trust and that is current with their diabetes knowledge is very important.

KERRI:  Alan Thicke, the Commissioner of Diabetes (complete with jazzy red phone, no less), has a child with diabetes.  You both have diabetes.  Is everyone on the Captain Glucose and Meter Boy Team affected by diabetes in some way?

BILL: Alan was great to help us out with the PSA and a total pro. We hope that when we do the full length DVD he will be able to play The Commissioner of Diabetes for that as well.  He is perfect for the role. I owe a lot to Alan, not the least of which is the character I played on his show Growing Pains lead to me starring on my own sitcom Just the Ten of Us.
 
BRAD: Everyone in the PSA was definitely affected by diabetes in some way. The actress in the clip has Type 2 diabetes.  When we do our longer DVD we plan on casting other actors who have diabetes. 

BILL: Unfortunately we’ll have plenty to choose from. Seems like every day we hear about another friend or acquaintance in the entertainment industry who has diabetes or has just been newly diagnosed. 

KERRI:  What’s the goal of your adventures as Captain Glucose and Meter Boy?

BRAD: To offer people a humorous and informative way to learn about diabetes.

BILL: We have the first script written which contains a lot of important diabetes information but presented in a way that will be extremely fun to watch. We’re looking for a corporate sponsor, like a meter company, to help us get this important DVD out into the marketplace.

BRAD: We want the people who watch it to both laugh and learn at the same time.  It’s important that we as diabetics develop a sense of humor about diabetes to go along with realizing the serious nature of it. I hate this analogy but it really does fit for what we’re trying to do “A spoonful of sugar helps the medicine go down.”

BILL: Can’t you find something better than that?

BRAD: I’m working on it. 

BILL: How about “If life gives you diabetes, make lemonade with Splenda!”

BRAD: You think that’s better? 

BILL: Hey that’s your department, I’m just trying to help.

BRAD: Maybe Kerri can come up with something better. She’s a very clever writer.  How about it, Kerri?

KERRI:  I'll throw it into the Think Tank.  (clunk)  The public perception of diabetes is generally tangled and confused, ranging from “Can you eat salt?” to “Can I catch it?”  What diabetes misconceptions have you experienced in your life?

BILL: There are so many misconceptions out there like: “Eating sugar caused your diabetes.” Not true.

BRAD: Or “You can only get Type 1 Juvenile Diabetes when you’re a kid and Type 2 when you’re an adult.” Not true.

BILL: “Diabetes can be cured.” Not true...not yet.

BRAD: “You can get rid of diabetes just by eating better.” Not true.

BILL: “Having diabetes makes you incredibly good looking.”

BILL/BRAD: That one is TRUE!

KERRI:  Living with diabetes means dealing with daily maintenance and monitoring.   How do you ward off “diabetes burnout?”

BRAD: Most days I don’t even notice the inconvenience of testing and taking my insulin. I’ve been doing it so long it has become part of my daily routine that just seems so natural. However, there are those days when it just becomes a big pain, figuratively and literally.  For me, the glucose meter is my saving grace. When I see a good number I consider it a reward. It motivates me to keep on being in good control. 

BILL: I don’t think we should beat ourselves up if we have a bad day. There are times when I have “slipped up” in the past where I really let it get to me. But those times are few and far between and I concentrate on the 99% of the time when I do the right thing. We’re all human and we’re vulnerable to making mistakes. The important thing is that you move on and do better…there’s always tomorrow!

KERRI:  What advice, as the Superhero fellas you are, would you have for someone who has recently been diagnosed?

BILL: It’s not the end of the world…

BRAD: …it’s just the start of a new life.

BILL: We’ve spoken to so many people with diabetes who have actually said, “Diabetes made me healthier.” Most people won’t understand that, but many diabetics will.  It’s the ultimate wake-up call and for most people it scares them enough to start making some major lifestyle changes for the better.

BRAD: I eat better, exercise more, and am more in tune with my body than I would have been if I wasn’t diagnosed with diabetes. 

BILL: Our motto is “Be your own personal Superhero.” That basically means that you are in control of your diabetes and you are the one who has the most at stake.  You have the ability to control diabetes instead of it controlling you.

KERRI:   Okay, so you have the keys to the Six Until Me Hot Air Balloon.  What do you choose to fly over and why?

BILL: Your hot air balloon needs keys?  In their finest.

KERRI:  They're just for show. 

BRAD: Bill, she’s just giving us an “imagine if you will” kind of question to let our imaginations run wild.

BILL: Oh, I knew that. And your imagination doesn’t need any help running wild.

BRAD: I’d fly over cities and drop leaflets down on the people below that said: “Diabetes is a treatable disease and you might have it. See your doctor to find out if you are at risk.”

BILL: My leaflets would say, “Auditioning for new Meter Boy.  Be a sidekick to one of the most handsome and fearless diabetes superheroes working today.”

BRAD: Captain Glucose and Meter Boy would fly that hot air balloon all over the world looking for people to help. Because…Whenever a Type 2 wonders what he should have for lunch, we'll be there. Whenever someone flunks a Glucose Tolerance Test, we'll be there. Whenever a Type 1 needs help learning how to inject, we’ll be there.  Whenever…

BILL: We’d better go now before he cues up the music and turns this interview into some kind of corny old movie. Thanks for having us, Kerri. And thanks for all you do for diabetes. You are the real Diabetes Superhero…all you need now is a costume. No doubt you will look better in tights than we do!

For more information on Captain Glucose and Meter Boy, visit their website.  And stay tuned for updates on their Superhero adventures!

August 31, 2007

Sam Talbot, US News, and a Senseless Purchase

Pearls from the blogosphere?  Don't mind if I do.

A pearl from the Blogosphere.Chris's mom originally pointed me in the direction of Sam Talbot.  "He's from Bravo's Top Chef.  He's been diabetic since he was a kid, like you!"  Of course I checked him out.  And, after a few family leads and some emails from Faithful Readers, I also noticed that Sam is up for "Glad's Steamiest Chef" competition.  According to the website, "For Sam's participation in the Steamiest Chef Contest, Glad is making a $5,000 donation to the Juvenile Diabetes Research Foundation International, the leading charitable funder and advocate of type 1 diabetes research worldwide... If Sam receives the most votes in the contest, Glad will donate an additional $25,000 to help further the foundation's work."  If you haven't already, cast your vote for Sam!

A pearl from the Blogosphere.In other diabetes celebrity news, have you taken the dLifestyles of the Rich and Famous quiz?  I was stumped on a few of these - test your celebrity savvy and see how you fare.  Also, on the Halle Berry tip, the discussion about her diabetes has been rekindled over at LOL Diabetes.  (Thanks for starting the buzz up, Hannah!)

A pearl from the Blogosphere.Also, I've had the honor and the pleasure of being interviewed by a SUM on US News and World Reporthealth reporter from U.S. News and World Report.  Their "Profile:  Living with Type 1 Diabetes" is a look at the daily management tasks of diabetes.  I'd love for you to check it out.  :)

A pearl from the Blogosphere.Chris and I are off for the weekend - nice, long holiday weekend.  No laptops.  Cell phones will remain in the car, just for an emergency.  No blogging.  No email.  No roads to race.  No schedule to adhere to.  NOTHING but the quiet bed and breakfast we've booked, some nice dinners, and each other.  Not to sound completely unromantic, but I can't frigging wait.

A pearl from the Blogosphere.And in Senseless Purchase news, I now own this:Silly little electronic cat.  Oh why did I feel the urge to own you?

I have no good reason for owning an iCat.  However, I can plug my iPod into it and it dances, it meows when it's bored, and I'm guessing it will eat batteries faster than my pump.   It was $10 at Kohl's and I bought it and I'm a small bit ashamed, but it made me laugh.  (It's also a smidge annoying and if you grab its tail, it yowls.  My co-workers may kill me within the hour.)  I showed it to Siah last night and she puffed up like a blowfish.  It was worth the $10 just to watch that scene.

Onward to the weekend!  Have a good one, and I'll see you all on Tuesday! 

July 17, 2007

An Interview with My Friend, Demarco.

The Interviews at SUM

My friend Demarco from Australia has returned for another visit at Six Until Me, and this time he brought his new hypo-dog friend Chino!  Fresh from Australia's Paws for Diabetics, Chino and Demarco are taking care of each other and having some fun.  Demarco and his mom, Kate, spent some time with me and gave me a glimpse into their diabetes lives. 

Kerri:    Can you tell me about when you were diagnosed with diabetes?

Demarco:  I was only 23 months when I was diagnosed with Type 1 Diabetes. I don't remember much about it, but some of the bad things I will never forget. I had these terrible pains in my legs and tummy, and because I couldn't tell Mum, she couldn't help me. I just screamed at her, the only times I stopped screaming was for water. I also remember getting my nappy changed a lot. I remember Mum taking me to a new doctor, and he did a prick on my toe. A little after that, my Mum screamed, and cried and she couldn't even walk to the car. The doctor had to take her to the car and my Dad had to drive. She was shaking a lot too. The strange thing was that I stopped crying and screaming for the first time in days because I finally knew that SHE knew that there was something seriously wrong with me, and she was going to get me help. She hugged me tight, and I clutched on to her long red hair, because it made me feel safe. I remember 4 men with stethoscopes trying to hold me down to put a huge needle in my arm, and looking at my Mum and wondering why she wasn't stopping them. Whenever I hear the song 'Tomorrow', from the musical, Annie, I think of hospital too. My Mum used to sing it to me when I had to have an injection or a fingerprick, but instead of singing, 'The sun will come out, tomorrow,' she changed the word to ' Demarco.'  I remember there was lot  of Winnie the Pooh and Tigger stuff given to me. I have a strange feeling when I see Winnie the Pooh now.

Kerri:    I know you’ve had some very cool experiences as a diabetes advocate – can you tell me Demarco and his hypo-dog pal, Chino.about your favorite one?

Demarco:  Since I have been fundraising, I have now made in total $5500 for JDRF Australia. The best thing that has ever happened from being an advocate is that a lady from Sydney rang my Mum and asked if  I would like to go an event called 'Kids in the House', where 100 other kids with Type 1 got together to tell politicians just how much we all need a cure. It was a pretty serious event, but the best thing was that I got to play basketball with the Australian Sydney Olympians at the Australian Institute of Sport.  I met one player, also with Type 1 Diabetes. He told me that I was the bravest kid he ever met.(I felt my ears go red.)  He said when he was diagnosed at 7, he was horrible to his parents, he used to steal lollies out of the cupboard and lie about his readings. He even said he hated himself. It wasn't 'til he became good at basketball that he realised that Diabetes could stop him at nothing. He changed his life completely. He shook my hand, and introduced me to the team. They lifted me up high in the air, and one guy tried to slam dunk me! The other cool thing was John Howard walked past our table, and I said to Mum' Wow! He looks like George Costanza from Seinfeld!!) I thought world leaders would be big and powerful. Mr. Howard looks like a grandad with caterpillar eyebrows!!! He DOES know a lot about Type 1 Diabetes though, and he is very passionate about finding us a cure. So I guess he is a pretty decent guy then. He’s just very small!

Kerri:  You and your mom are a good team and you work together to manage your diabetes.  Do you have other friends with diabetes?

Demarco:  I have met lots of people with Type 1 Diabetes. When older people find out that I am a diabetic, they sometimes say that I will grow out of it, or I should cut back on sugar. This hurts my feelings,but I am getting better with it now. I have my best American friend, Brendon, who is my penfriend, and I have met lots of kids who are a bit older than me who are great to talk to. There is nothing like talking to someone who has diabetes, because they walk in your shoes. My mum is a mentor to a girl named Jelly, and she is probably my best girl friend. She goes to high school, but we are on the same insulin, and we both feel the same way about having diabetes. I really like her a lot. She is really, really pretty too.

Kerri:    Being diabetic means there will be some low blood sugars sometimes.  I heard that you recently added a new friend to your diabetes team – Chino!  Can you tell me about your new friend?

Demarco:  Chino is a 4 month old pure bred whippet. He is the best thing that has ever happened Demarco and Chino have a cuddle.to me. He goes everywhere with me. The law says that he can go everywhere except an operating theatre of a restaurant kitchen. We have cool ID Cards with our pictures on them. He has picked up so many hypos before they turn dangerous. He has a few different ways of alerting. He will either nudge my chin and whine like he is crying, he will  howl like a dingo, he will jump up on Mum and start biting her jewelry or her collar, or he will bite my fingers, and won't stop when I say 'no.' If he does any of these things, we test, and each time, I have had a problem with my blood sugar that I wouldn’t have known about until much later when I started feeling sick. I have had less hypos. It's such a good feeling not to feel that way all the time. I am a happier boy now! Chino came to me because my Mum got in contact with a lady from a company called 'Paws for Diabetics.' She has matched up dogs with people all over Australia and their lives have improved, as well as having a new friend! When he gets older, he will be even better at his job. His sense of smell is 500 times better than ours, so he is able to detect when my sugar levels are changing through sweat. He has all the same rights as a guide dog. As he is so friendly, he has to do a lot of training so that when we are out, he is totally focused only on me. I can't imagine life without him now. I used to only like cats, and there were three breeds that can detect hypo attacks. A Chinese Crested (it has no fur except a tuft on his head-a little creepy) A Shetland Sheepdog, (too big and lots of fur to look after) and that left a whippet. I kept thinking that he would look like the dog off the Simpsons, Santa's Little Helper! He doesn't though. He is beautiful, and he cares for me so much.

Kerri:    Aside from doing things to raise awareness about diabetes, what other things do you like to do? 

Demarco:  I really am into Yugi-Oh Collector Cards, I guess because I can speak a bit of Japanese, and I like Anime cartoons. I am also doing pretty well at karate now that I have swapped insulin. (I am on Novorapid and Levemir). I love hanging out with my Mum, she is a good teacher, and she sure knows how to look after people with Diabetes! I just love talking to people, Kerri. They don't have to be six, they can be 30, or 80 or 13, just as long as they have a good heart and treat themselves and me with respect. I want to be a good swimmer too, so when it gets warm again, I will start swimming again. (When I was on Protophane, I couldn't do many sports. I was always hypo even after loads of carbs and less insulin.)

Kerri:    Demarco, if you could ride around in a hot-air balloon, what would you want to fly over? 
 
Demarco:  If I got to go in a Hot Air Balloon, I would probably wanna check out Heaven, just to say hello to my Uncle Paul, and my Grandmother. I would ask my uncle if he could use some heaven magic to keep my eyes and kidneys well. I would want to say hi to Jesus and the angels too. Oh, and the Artic Circle, so that I could spy on Santa, to see what he's got in store for me this Xmas. (I have been pretty good for the first half of the year!)

Kerri:  Thanks, Demarco!  Enjoy your new friend!

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