Here you'll find things to improve your diabetes management: motivational tips, recent research, my observations and reflections, good books etc. Also:
1. Check out my books:
2. Read me on the Huffington Post
3. Always continue to learn and laugh
The recent article, "Doctors Tell All - And It's Bad," published in The Atlantic is confirmation how troubled our healthcare system is, with a new twist, how unhappy doctors are caught smack in the middle.
Meghan O'Rourke describes doctors' difficulties, our system's breakdown and the effect on patients' care, outcomes and comfort.
Some notable excerpts:
"Without being fully aware of it, what I really wanted all along was a doctor trained in a different system, who understood that a conversation was as important as a prescription; a doctor to whom healing mattered as much as state-of-the-art surgery did. "
"Yet empathy is anything but a frill: not only is it crucial to doctors’ humanity and patients’ dignity, it can be key to medical efficacy. The rate of severe diabetes complications in patients of doctors who rate high on a standard empathy scale, Ofri notes, is a remarkable 40 percent lower than in patients with low-empathy doctors. “This is comparable,” she points out, “to the benefits seen with the most intensive medical therapy for diabetes.”
"Medicine today values intervention far more than it values care."
I long have been following the writing of doctors who have been themselves chronicling how care has gone missing from healthcare - Doctors Danielle Ofri, Sandeep Jauhar , Victoria Sweet, Rachel Naomi Remen.
This is another worthwhile read to understand what's really below the icecap.
For the fourth year Manny Hernandez, founder of the Diabetes Hands Foundation, is making sure we experience the benefit of activity on our blood sugar - and as a result, getting diabetes supplies and insulin to children in need around the world.
The movement is called the BigBlueTest - and you can't fail.
Sign up here and this is what you'll do:
Record your results on the sign up page above - and if you can spread the word. With 35,000 people taking the test, $35,000 will go toward life-saving supplies. And, you'll see what a little activity can do!
Six days ago, Adam Brown, T1D and senior editor of diatribe, sent out a call to the Diabetes Online Community - to encourage people with diabetes to take a 5 minute survey. The survey results will go directly to the FDA and inform a groundbreaking patient=led discussion with the FDA November 3.
The event will include patients, both with type 1 and 2, representatives from the American Diabetes Association, JDRF and diaTribe. Presented, will be the numerous challenges we face every day - that's what will be captured in the survey. Those insights will then be shared directly with the FDA.
Help us tell the FDA what matters to us and what we need, including what the biggest barriers to diabetes management are. This truly is an event where your voice will be heard and will count.
Immediately, numerous patient advocates in the DOC took up the cause to spread the word. Here's a quick from the heart video appeal from fellow advocate Manny Hernandez.
In my last post, I talked about the patient filling gaps in healthcare. Dedicated to researching how we can help improve care for other people with diabetes, and how health care providers can be more empathetic and present with patients - what I see as critical to care for people who live with a chronic condition - I love reading books written by doctors that describe their world.
I've already shared I'm a big fan of physician/authors' Danielle Ofri and Rachel Naomi Remen and I'm currently reading the book, "Intern" by Sandeep Jauhar.
Jauhar describes his first year as a resident at a big city hospital. As he points out, efficiency and getting through rounds seeing patients is more important than any quality time spent with patients. It's a stunning, shocking, eye-opening revelation how grueling medical training is, how little "care" is actually given patients and how the process all but completely trains empathy out of burgeoning doctors.
Here's are a few excerpts:
"By this point in my internship, I had already come to appreciate that there was a fundamental disconnect in the hospital. Good relations with patients weren't rewarded; efficiency was, which meant focusing on the work at hand, operating with a kind of remote control, in front of computer screens and nursing charts and requisition forms, and on the phone. Face-to-face time was a relatively insignificant part of the job. The high counters around the staff workstation delineated not just a workspace but a type of kingdom, too. It might as well have been ringed by a moat...
If internship was supposed to stoke intellectual curiosity, I never saw it. Like me, most of my classmates seemed disengaged, mentally exhausted. With patient rosters of fifteen or more each, we were preoccupied with getting our work done. Anything that got in the way- even a bona fide medical mystery- was more often seen as a bother than a learning opportunity…
The worst was when you were alone with patients and you realized you knew next to nothing about them. They'd be on bi-level positive airway pressure ventilation or something, and you didn't want to go through the chart to figure out why, but you felt guilty, so you hedged and read a little bit and learned a little bit, and read some more and discovered some more, and you realized how much you learned was dependent on how deeply you were willing to look, and what was pushing you was a sense of duty, but the cut was ill defined and couldln't you just ignore it and go home? …
There was a constant tug of war between desire and duty: Your desire was to get the hell out of the hospital and have a life; your duty was to be a good doctor… If you did everything you were overwhelmed. If you didn't you felt guilty...So I compensated by writing off-service notes, hoping someone on the next rotation would address the issues my team had ignored."
As Jauhar writes as well, for all the work loaded on nurses' shoulders without equivalent power, they are the force in a hospital who can make your life hell or tolerable.
I find the book engrossing and it helps me to understand the fierce pressure, competition, opposing forces, desire not to show any weakness or ignorance and time constraints being a good, kind and caring medical professional costs in our healthcare system. It's a sad and unfortunate revelation.
As the number of people with diabetes continues its astonishing rise - from 26 to nearly 30 million and in pre diabetes from 79 to 86 million - the number of endocrinologists who specialize in their treatment remains flat.
There are roughly only 5,000 endocrinologists and 19,000 diabetes educators across the country today. How are we going to take care of the millions more people with diabetes adding to the statistics every year?
Few primary care providers refer patients to a diabetes educator and most patients with Type 2 diabetes are treated by their family doctor. Unfortunately, many are not up on the latest research, medical guidelines and/or drugs - and don't want to spend the time titrating new patients on insulin.
But an unexpected and critical new member of the diabetes team has lately appeared: the highly informed or 'smart patient.'
More and more smart patients are filling the educational gap - and filling a gap health care has been slow to recognize, the -- "I get it" gap. To be blunt, health practitioners who don't have diabetes for the most part simply don't "get it."
Looking at how patients are inserting themselves into the health landscape, we should be encouraged by our influence to continue and congratulate ourselves. We are making a crucial difference to thousands, maybe millions, of others living with diabetes.
The educational influence of patients
Since the first social media sites began popping up to widely share knowledge, advice, experience and wisdom, offerings have grown more sophisticated catering to specialized audiences -- Type 2s, Type 1s, parents of children with diabetes, women, athletes.
Further, take a look at this year's Top 10 recognized social health makers in diabetes.
My first inkling that patients held sway was five years ago when Roche invited 30 top diabetes bloggers to their headquarters to better understand how to talk to their customer base online. Several other pharmas, including Medtronic and Eli Lilly, quickly followed suit.
More recently, patients have taken the stage at major diabetes conferences - the International Diabetes Federation World Congress, American Diabetes Association, American Association of Diabetes Educators and Children with Diabetes' Friends for Life - sharing personal wisdom, device knowledge, social media information, and their distinct expertise.
I conduct workshops with health care providers to help them extend their repertoire from working with people with diabetes from a "coping approach" to a "flourishing approach".
Kelly Close, editor in chief of diaTribe, who has type 1 diabetes, said one of the most notable developments at the recent 74th American Diabetes Association Scientific conference, where more than 17,000 top diabetes medical professionals, scientists, researchers and trade people gathered, was the room given to the patient voice.
Amy Tenderich, founder of the top patient news-reporting blog, DiabetesMine, has been running an annual Innovation Summit at Stanford University School of Medicine for four years. Patient advocates, device designers, researchers, clinicians, pharma R&D leaders, mobile health experts and regulatory experts gather to develop new ideas, products and tools to improve life with diabetes.
Two years ago big pharma, Sanofi, launched a similar initiative. Patients are nimble and quick where corporations and institutions often are not. A few months ago Tenderich launched "TestKitchen," video reviews of diabetes products by and for people with diabetes.
Patients as mighty advocates
Diabetes blogger, Kim Vlasnik, launched her inspirational video, "You Can Do This"project three years ago from a personal passion to validate and share "honest talk" among people with diabetes and their loved ones. It's popularity is the benefactor of the "I get it" factor.
The Diabetes Online Community this past Valentine's Day asked people to buy their 'Valentine' 11 roses instead of 12 and contribute the change left over to Life for a Child, the humanitarian organization that provides clinical care and insulin to children in developing nations.
The campaign brought donations from 24 countries and raised more than US $27,000 dollars. That's an additional year of life for 454 children.
Bennet Dunlap, who has two children with type 1 diabetes, created StripSafely. It's hard-charging message - to tell the FDA that people with diabetes want glucose test strips checked for accuracy both before, and after, they enter the marketplace - was driven across the diabetes space by advocates.
Last March, Bennet hosted a Q&A webinar with the FDA whose public docket on meter accuracy received record levels of comments from the diabetes community. The FDA is now creating a post-market surveillance-testing program.
This is a mere slice of what patients are doing - and only in diabetes.
AtPatientsLikeMe patients are tracking and sharing their health information, according to the Company on more than 2,000 conditions - from medical diagnosis to treatment plans and outcomes. In addition to patient-sharing, data from this rich repository of real-world experiences is being shared with pharmaceutical companies to improve and quicken drug development and treatments.
When I wrote my second book in 2009, 50 Diabetes Myths That Can Ruin Your Life, my book agent said we'd never sell it without a doctor's name on the cover. She was wrong, only my name is on the cover, but five medical experts who vetted the work are prominently listed inside.
Now, every month, books written strictly by patients appear in my mailbox.
Peer-mentoring is supplementing healthcare
Medscape's article, "Peer Coaching Improves Glucose Control in Diabetes," confirms both the value of peer-coaches to help create clinical improvements in patients and their ability to fill the gaps where primary-care providers are in shortage, particularly in low-income and rural areas.
Since 2007 I have been a peer-mentor in the Sanofi A1C Champion program. Having grown from three peer-mentors in 2003, today 87 of us contribute and criss-cross the U.S. on any given day delivering five different educational programs.
Henry Anhalt, D.O, Interim Head of Sanofi U.S. Diabetes Medical knows the strength of the program, and of patients. As Anhalt told me, "We recognize that the patient's voice is extremely powerful in motivating other patients to adopt positive health behaviors and become more engaged in their health."
Rachel Sexton, Vice President of VPR POP, the company that manages the A1C Champion program, hears often from physicians after a program, "I've been telling my patient this for years, but it didn't sink in until they heard it from another patient."
Part of the magic peer-to-peer programs offer is what's often missing in healthcare, empathy. Sanofi has already developed with VPR peer-mentor programs in two additional disease states - Gaucher and Multiple Myeloma.
Expanding opportunities for patients
HealthDay just reported that one in ten visits to the doctor involves diabetes. The epidemic is growing. While patients should never, and will never, replace health professionals, we can offer something medical practitioners cannot.
Not bound by the restrictions of a mammoth health care system that providers and insurers labor under, we can be fleet of foot, more innovative and across the internet reach thousands like ourselves. One day millions.
The influence of patients also benefits practitioners. By reading diabetes social media sites and books written by people with diabetes, practitioners can learn what patients think, feel, need and are concerned about, and - in our time-starved medical system - share these resources with their patients.
International Diabetes Federation's 'Young Leaders in Diabetes' conference, Melbourne 2013. 124 diabetes patient leaders from more than 60 countries.
I believe what Sexton foresees - patients will be inserted into more programs and places including educating medical students, those at healthcare corporations and anyone with a vested interested in health.
We should be looking now at creating ever more opportunities where people with chronic illness can serve as educators and inspirers.
We should be more fully leveraging this powerful and critical "smart patient" movement to educate, cut costs, amplify resources and offer the sole province of patients - shared empathetic understanding.
For in the end, no one "gets it" like the one who has it.
For a list of more diabetes social media sites, blogs, books and more on the A1C champion program click here.
Yesterday I listened to a number of people with type 1 diabetes share their personal tips for managing their diabetes. Above was the last tip recommended, to watch this video from Dr. Steven Edelman, founder of TCOYD on "diabetes and drinking." So while writing this, I did. You should too and have a laugh before we go on to more serious stuff.
The Patient Tips session was part of JDRF's ONE Expo. A fairly new outreach program trying to bring - education, engagement and empowerment - to the type 1 community in New York City. JDRF is the largest charitable supporter of type 1 diabetes research.
The session was led by Zoe Heineman, who has started her own Ha! (Hypoglycemia Awareness) movement and is training first responders to recognize low blood sugar.
Here are some of the 'Tips & Tricks for Daily Type 1 Management' that were shared by the group including patients, a mom, a sibling and professional athlete:
• Train everyone around you what to do in case of emergency like for instance where you keep your insulin, glucose tabs.
• Give yourself a break. One blood sugar number does not make an A1C.
• A woman who's had diabetes 53 years shared that she's always had high A1Cs until she went on a low-fat, high-carb regimen that brought her A1C down from 8% to 6.5%.
• If you're in school explain diabetes to your teachers and classmates. And tell your friends. They won't treat you any differently and you'll feel safer.
• This loving sister shared that she's not annoyed to wait for dinner if her brother's blood sugar is high and she's more than happy to do speed walking down hotel corridors with him.
• This mom shared how important it is to accept the diagnosis. A family can't create a positive nurturing environment until you do.
• If you have an office job, keep your desk as well stocked as a drugstore - with pump and test supplies and reserves of quick acting sugar.
• Diabetes doesn't define you, it's something you have. It needn't stop you from doing almost anything.
• Diabetes is an art, not a science. You can't always figure it out. You can't be perfect at this. Try things out and don't be defeated. It's all learning.
• Use exercise to help maintain your blood sugar. No one ever felt worse after exercising - it helps keep weight off, feels good to move your body, have fun and make it social.
• Check your blood sugar, don't guess. 95 mg/dl may feel different today than it did yesterday.
• When traveling, keep some supplies on you and some in checked luggage so if you lose some you have back up.
• HelpAround is a community of type 1s. You can register and always find someone nearby who can assist you if you need insulin or a question answered.
• If you're drinking, check your blood sugar frequently and make sure your friends know you have diabetes.
• Don't have your life revolve around your diabetes.
All good ideas. If I add my two cents I'd tell you to appreciate all the work you do managing your diabetes and find one positive thing diabetes has given you and remember it when you feel overwhelmed.
JDRF is hosting an informational event this Wednesday in Manhattan. From 3-8 PM ONE Expo will bring families and individuals - children and adults- affected by type 1 diabetes together to learn, engage and be empowered.
The Altman Building
135 W. 18th Street, NYC
3-8 PM there will be vendors in diabetes technology and treatment demonstrating their wares.
4-4:45 PM - Tips and Tricks for daily T1D management, a discussion led by a panel of people living with type 1.
5-6 PM - Preventing T1D Complication, MDs and researchers including clinical trials, eye care, pediatric and neurology.
6:30-8 PM - Artificial pancreas research update.
To register, click here. See you there.
T’was the night before Labor Day
when I decided to change my lancet
How long had it been…
Hmmm, maybe since last I was in transit?
My used syringes cooed all snug in their drawer
Smug were they feeling and absolutely sure
that I wouldn’t come looking to change them too
for they knew my outer thighs had to first turn black and blue
I fumbled around mostly in my brain
Where in heck are those needles I’d seen when last it rained?
Surely I had some, maybe on this shelf maybe that?
Think, you must think, but only gobbledegook was coming back!
My husband approached while I searched, and then forgot
just what I was looking for -b-boom, b-boom - ever-quicker beat my heart!
Then the sweat started pouring down my face onto my chin
My husband panicked yelled, “Forget needles, you need sugar. I’ll bring!”
“No, I need a needle I insisted to thread my lancet
Who needs sugar? Hey, honey, you look so handsome!”
A moment later a jar of honey and a giant spoon
reached up to my mouth, likely not a moment too soon
I hate to admit it, when I fall down on the job
Sixty-one I’ll be tomorrow and still it’s just so hard
Because every day is different and we can only ever guess
How many carbs? Too much insulin? One minute “nailed it!” the next distressed
It’s the nature of the this life to be thankful and frustrated
Another crises over, those pesky lancets finally located
Hmmm…I wonder when this vial of insulin needs to be replaced
A week, maybe three, oh, my, could it actually be today?
More and more patients living well with diabetes are teaching and supporting other patients by sharing their wealth of knowledge and experiences.
Here are lists of trusted diabetes web sites, social media sites, blogs, books and information about the A1C Champions peer-mentor program I participate in.
If you are interested in a free A1C Champion program for your patients, or becoming an A1C Champion peer-mentor yourself, the contact information is below under “The A1C Champion Program.”
Recommended Diabetes Websites (in alphabetical order)
American Diabetes Association (diabetes.org)
#DSMA (Weekly twitter chats)
MyGlu.org (Type 1 diabetes-specific)
Juvenation.org (Type 1 diabetes-specific)
PatientsLikeMe.com (Various disease states)
TypeOneNation.org (Type 1 diabetes-specific)
A list of those in the infamous Diabetes Online Community http://diabetesadvocates.org/getting-to-know-the-diabetes-online-community-doc-2/
Blogs, communities and more. The most exhaustive list I’ve seen. http://www.diabetesmine.com/blogroll
Several books written by people with diabetes
Balancing Diabetes – by Kerri Sparling
Diabetes Do's & How-To's, 50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It and The ABCs of Loving Yourself With Diabetes - by Riva Greenberg
Emotional Eating with Diabetes, Your Diabetes Science Experiment, Dealing with Diabetes Burnout – by Ginger Vieira
Kids First, Diabetes Second - by Leighann Calentine
My Sweet Life: Successful Women with Diabetes and My Sweet Life: Successful Men with Diabetes – by Beverly Adler
SHOT – by Amy Ryan
The Book of Better: Life with Diabetes Can’t Be Perfect. Make it Better – by Chuck Eichten
The First Year: Type 2 Diabetes: An Essential Guide for the Newly Diagnosed and Prediabetes: What You Need to Know to Keep Diabetes Away - by Gretchen Becker
The Sisterhood of Diabetes – by Judith Jones Ambrosini
The Smart Woman’s Guide to Diabetes – by Amy Mercer
TypeCast: Amazing people overcoming the chronic disease of type 1 diabetes - by Andrew Deutscher
Books by parents of children with diabetes
Raising Teens with Type 1 - by Moira McCarthy Stanford
Kids First, Diabetes Second - by Leighann Calentine
And now for some books written by patients who are also medical professionals:
Dr. Bernstein’s Diabetes Solution – by Richard Bernstein (Also a doctor)
Taking Control of Your Diabetes – by Steven Edelman (Also a doctor)
Any of Sherri Colberg’s books (Also an exercise physiologist)
Any of Gary Scheiner’s books (Also a CDE)
The A1C Champions Program
If you’re a medical professional and work with people who have diabetes, you can request one of these six free, hour long educational programs for your patients. Each program is presented by someone living successfully with diabetes.
• Taking Control – Basic educational program
• Managing Diabetes: The Next Step (live and webinar)
• Telling My Story - Adult with type 1 diabetes speaking to type 1 youth
• Our Diabetes Journey – Given by parent and child for parents and kids
• Me-Power - Program from a person with diabetes and CDE
• Diabetes Together – Given by a person with diabetes and his/her care partner
To request a program, please visit www.vprpop.com or call: 816-756-5999.
If you have diabetes and would like to become an A1C Champion, please contact the website or call the number above.
I’ve been an A1C Champion since 2006 and love going out and helping others with diabetes learn, grow and gain the confidence to do better.
Whether I’m speaking to a support group of patients in rural Ohio, or am part of a full day health event in Albuquerque, New Mexico, it’s the cliché in action – "you get when you give."
Many A1C Champions say being in the program keeps them more committed to their own health. Fellow Champion, Doreen, says, “When I share my story people open up their lives to me, wanting to talk and share their challenges about diabetes. I can’t imagine doing something more rewarding.
81 years young Charles has been with the program almost since it’s beginnings in 2003. “These programs give hope and information that patients often do not receive from their healthcare provider, and, they actually see that people can manage their diabetes.”
Finally, as my new friend, new Champion, William, said, by way of Groucho Marx’ quote, I wouldn't belong to any club that would have me, “I’m ecstatic beyond words that the A1C Champions program would have me, and allows me to be part of the team, do this work and give back.”
Last year I wrote, "Diabetes Do's & How-To's," to give you very specific action-steps to live your healthiest life with diabetes. The book covers Food, Fitness, Medicine and Attitude. And, has 19 gorgeous cartoons by illustrator Haidee Merritt who's lived with diabetes since she was two!
Now I'm giving a special webinar with dLife so you can have several important steps to "health-up" regarding what you eat, weight control, checking blood sugar and staying emotionally strong to manage your diabetes day to day.
Tune in next Monday, August 18th, at noon for the webinar. You'll get great tips, your questions answered and a special one-time discount on the book.
It'll be a great learning experience and I promise to make it fun. To register for this free event, just go to: https://attendee.gotowebinar.com/register/5200175787112752130
See you there and invite your friends and loved ones!
The great CDE, founder of Integrated Diabetes Services and author Gary Scheiner, and his fellow CDE and Director of Lifestyle and Nutrition, Jenny Smith, conducted a Carb Quiz in May.
Below is part of the interview they conducted with three outstanding "carb-counters," that may give you a few ideas to make counting carbs easier.
Of course I no longer call it carb-counting, but carb-guessing. And I'm sure we can all relate to that!
What are some of the tools you’ve used over the years to count carbs?
Stephanie: I’m using measuring cups and a food scale at home to be as accurate as possible. At times I am tempted to just pour a cup of milk without using a measuring cup, but then I think about how well controlled my BG is because I do measure and this helps me continue to use tools.
Lisa: I started by using measuring cups and a food scale. After a few years I learned about “carb factors” and this has been most helpful for more precise counting for the portions I want to eat. I use carb factors a lot for fruits and vegetables. I find when I use measuring tools at home it trains my eye to be aware of what a particular portion looks like and how much carb it may contain – it’s so helpful when I don’t have a label to read. When I’m eating out at a restaurant I look up information online or I use my Calorie King book as a reference.
Stephen: There was a learning curve –some foods don’t “look” like they would have sugar! I had to remember there was carb in milk! I downloaded Gary’s book – Think Like a Pancreas and read it in one night and realized I needed help. I use Calorie King and I look up glycemic index as well as information when I’m going to go out to eat. I do use measuring cups and labels, as well as the estimation tricks I’ve learned from working with Integrated Diabetes Services. I’m the primary cook at home so it’s easier to count when you know what has gone into a dish you’ve prepared.
What has worked the best for you to ensure accuracy?
S: Measuring is my best tool. I feel measuring at home has helped me count carbs more accurately when I don’t have a label or the measuring tools to use – such as in the College dining hall. I have learned to eyeball a portion of carb when eating out by weighing fruits and other carbs at home. I also tend to look info up before going out so I have a more specific count than a simple guess, especially if it is a restaurant that I’ve never been to before.
L: I use eyeball portions when I have to “guess”. I often refer to the size of a tennis ball because I know about how much this is as a measured portion and then I can more accurately account for the carbs when I have to guess. My best time saving trick at home is to use a measured ladle for soups/casseroles (½ cup per ladle), and I use drinking glasses with a line that equates to a specific portion (pouring up to this line on the glass is equal to 1 cup).
Stephen: I feel the best trick is to trust my gut feeling. Calorie King may say “this is 15g carb”, but then I’ll consider my past experience with the food and what the response was on my CGM. I may adjust up or down by 2-5g based on previous experience. The use of measuring cups and labels are also major players in ensuring I learn how to count – it helps when I have to guess something that may not have a label.
Do you take into account fiber/glycemic index/glycemic load?
S: I do consider fiber – I subtract it all off the carb count. If it is a lower glycemic index food, I may deduct a bit off the suggested bolus.
L: I don’t use anything scientific, but I keep these things in mind when meal planning and counting carbs to evaluate the effect after meals.
Stephen: I do consider fiber – I subtract all of it off of the carb count. But, I also take into account the kind of food it is or the glycemic index of the food– sometimes I only subtract ½ the fiber count (I use this for things like granola bars because of all the added sugar, I’ve found that I really can’t subtract all the fiber noted).
Do you feel the use of “smart” pump features helps you cover your meals better?
S: I haven’t been using square/dual bolus (no one has really taught me what to use them for) – but I do use the temporary basal feature for my lacrosse practice as well as running. I feel it’s the accuracy in counting carbs that makes the major difference in post meal control.
L: I like to use these when grazing or when eating out at a buffet – I don’t think I use this often enough and when I look back at my pump records, I see I could probably use it for more foods/meals. It’s a question I should ask my nurse educator about so I can use this more effectively. Since I do a good job with precise carb counting already, I assume proper use of the combo bolus would improve my BGs even more!
Stephen: I have no experience with the smart features on the pump, but I would assume that it’s accuracy in counting as well as portion estimation that makes the most difference.
Do you have any words of wisdom to help everyone become a king or queen of carb counting?
S: “When you are home and you have access to scales/measuring cups – use them frequently. This will help you with more precise guess-timation when you are out and don’t have your tools or a label available.”
L: “Take classes or ask to take them. You might think you are good at counting carbs and there isn’t anything new you’ll learn, but there is always something new. Every class seems to teach me something I didn’t know before, even as good as I think I am at counting!”
Stephen: “Measure your portions when you have the tools available, and learn how to estimate these when you are away from your measuring tools"
My best advice - routine. If you eat the same basic foods most of the time, you'll get to know how they affect your blood sugar.
And, if you can, eat a low carb diet. Then, for the most part, your blood sugars won't be bouncing all over the place! Or as they say, "riding the roller coaster."
Kelly Close if you don't know is a tireless diabetes advocate and on the front lines of diabetes information and its dissemination. A highly respected financial analyst, as well as someone who's lived with type 1 diabetes for more than 25 years, Kelly runs Close Concerns and keeps an eagle eye on research, product development, pharma and the FDA. diaTribe is her free every other month e-newsletter.
The July issue had a message from Kelly I wanted to pass along. Given the FDA's risk-averse policy to new drugs and devices, many products that could help the many linger and languish. Kelly's inviting any and all of us to chime in to the FDA at their public hearing August 11th. Here's the article below and here's the plea: please email us on what you would like the FDA to know at:
We want our diabetes treatments to be effective, but we also want them to be safe, and it is up to the FDA to decide if the benefits of a given medication outweigh the risks. Our concern, is that the pendulum has swung too far in favor of caution and safety at the expense of innovation. Much-needed new products are being delayed or even shelved entirely. the good news is theta FDA will be considering these risk-benefit tradeoffs at a meeting in August, and you have a chance to make your voice heard.
Determining whether a new diabetes drug should be approved has never been easy, but the turning point in this debate occurred in 2007, when Avandia was implicated for apparently increasing the risk of heart attacks. The FDA revised its guidelines so that drug companies would need to demonstrate cardiovascular safety before approval, adding huge costs to the process ($100 - $300 million). The FDA tried to ease this burden by allowing the companies to submit so-called interim data, or data midway through the cardiovascular (CV) trial that demonstrated safety, and the companies could complete the trial after the d rug was approved.
Unfortunately, that hasn’t worked out too well. Once the drug has been approved, participants want that drug and are motivated to abandon the trial. It’s logical behavior, but it negates the very costly study.
The result? Companies are giving up on diabetes. Bristol-Myers Squibb left diabetes entirely in 2013, and Genentech is out too. The cardio trials can delay drugs (like degludec) and follow up drugs (IDegLira) for years. Takeda said it won’t develop its once-weekly DPP-4 inhibitor in the US because trials are too expensive, while delays with Sanofi's GLP-1 agonist Lyxumia slowed development of entire new classes of diabetes drugs.
In sum, there are benefits to the trials, but we believe we are sacrificing innovation at the altar of safety. (And by the way, Avandia was ultimately found to be safe).
The FDA is holding a public hearing on August 11 to discuss how to address interim data in trials. This is a real opportunity for our community to make our voices heard. Registration to attend is open until July 28; those who can’t make it to Silver Spring, Maryland, can submit a comment right here at Kelly@diaTribe.org. Every comment submitted before July 28 will be considered, but you can submit all the way up to October 10. We would love to thank the FDA for giving patients and families and healthcare providers the option to comment.
When our response is ready, we’ll tweet it and make it widely available – we’re working on it now! This issue is complex, and it’s only part of a much larger question about how we should handle drug development and approval. But for now, let’s tell the FDA that the status quo isn’t working. We also look so forward to following up November 3 in a conversation with FDA – read our new now next for more on this!
I am not medically trained, yet there’s a lot I can give another person with diabetes that a health provider can’t. From 42 years of living with diabetes I know a lot more about medication and food and blood sugar than most.
One thing I am however is a peer-mentor with the A1C Champion program, and I am among 80 people living with diabetes who speak across the country to other people who have diabetes.
When someone with diabetes, either recently diagnosed or having had it for years, hears from their doctor what they have to do to manage it, they’re usually looking back in the face of someone who doesn’t have it. Someone who thinks what’s the big deal about changing how you eat, taking up an exercise program, taking pills with every meal or six injections a day? Just get on with it.
But when we talk as fellow patients those we talk to look back in the face of someone who gets it. Who knows how frustrating it is when even though you’ve been “good”- eaten the right foods and walked around the mall - your blood sugar is “bad” - not in your target range.
The hour-long programs we present as peer-mentors provide information and education, but largely provide inspiration through our own personal stories of struggle and success.
Patients learning from patients is a very different kind of education than patients learning from medical professionals. And it's happening more and more. Patients go online, follow diabetes bloggers and volley what they know back and forth. Patients learning from patients is about a shared bond and experiences.
This led me to reflect on an early A1C Champion presentation I gave in Buffalo, New York. It was the first time I was double billed with a diabetes educator. Her talk preceded mine, so I leaned back and listened. What I heard was forty-five minutes of numbers: A1Cs, blood pressures, weight and weight control, exercise, portion control, and carb-counting.
While all this is important information, I also heard what she left out. That these goals are not easy. That we have to find a way to fit it all into our day. That a small step in the right direction is to be applauded. That we should pat ourselves on the back for every good effort.
The purpose of my talk I quickly saw would be to say what she did not: to talk about how we hold diabetes in our lives and if necessary how holding it differently can help. Taking the stage I shared my own shock and fear upon diagnosis, my subsequent denial, and my early complications from that denial.
The room quieted. I was they saw like them. I see the same landscape they see. I tramp through the same darkness trying to figure out half the time why my blood sugar’s doing what it’s doing. I look for solace when diabetes rains down upon me or drains me out.
“When you’re so busy testing your blood sugar every day,” I said to my audience, “reading labels, counting carbs, and calculating everything, do you stop to think why you’re doing all this work? Isn’t it to see the grandkids grow up, start that second career, create the best vegetable garden in town, contribute something to the world, or have another million days with your spouse?”
Heads nodded and people leaned forward. They turned from silent witnesses into curious involved participants. Someone had brought humanity back into the room. Someone had understood and acknowledged this piece of living with diabetes where their heart resides, along with their struggle.
My predecessor, warm and personable though she was, didn’t have diabetes. That put her not just on the other side of the projector, but on the other side of our experience, where so many healthcare providers sit.
We patients, however, are the experts of our diabetes and we are in the daily business of chronic illness. We have life adjustments to make, and since we have precious little help to make them, we are reaching out to each other.
Here are my 5 recommendations for a better tomorrow:
1. Learn all you can about diabetes, and about your diabetes
2. Pace your efforts, forgive your mistakes
3. Appreciate what you hold dear
4. Spend more time doing what you love. While we’re living with diabetes let’s not short-change the “living” part.
5. Consider yourself "more than" not "less than." We're all doing a second job.
After the program, people crowded around to thank me, and they were smiling. Well, if anyone can leave a diabetes meeting with a smile then I figure I've done something right
This poster was created last year by the American Recall Center with the help of several diabetes bloggers to help educate people about diabetes. I just found it and thought it worth updating you on several things it says here and explaining a little further.
So starting at the top of the maze and going down, "Keeping my blood sugar under control requires both meal planning and exercise." True. It also requires knowing stress often raises blood sugar as well as being sick.
"Diabetes has to be a factor in every decision I make." Well, most decisions, and I do spend an exceptional amount of time thinking about it. Except maybe when I'm deciding what color bedspread to buy.
DID YOU KNOW? "Warning signs are excessive thirst & urination, weight loss and lethargy." Another key sign of diabetes is often blurry vision.
"Sugar alone does not cause diabetes." Actually sugar does not cause diabetes, period. Best we know, type 2 diabetes is caused by genetics, being sedentary and overweight. Of course if you eat too many foods with sugar, it's easy to gain weight. The jury is still out on what causes type 1 diabetes.
"I can quickly go from perfectly fine to dangerously low or high blood sugar." Yes, one's blood sugar fluctuates all day - and all night. But "quickly" is debatable. It may not take hours, but it also doesn't take seconds.
"Diabetes can happen to people who have no apparent risk factors." Likely the risk factor that's not apparent is genetics. And, few people know, but 1 in 5 people with type 2 diabetes are slim or normal weight.
DID YOU KNOW? "25 million people in the US have diabetes?" Unfortunately, that's gone up to 29 million people and currently 86 million people have pre-diabetes (or Stage 1 of Type 2 diabetes.) That's gone up from 79 million. And, one-fourth of people in both populations don't know they have diabetes.
"We are capable of achieving anything that a regular person can." Well, yes and no. Like everyone with diabetes, I want people to know it doesn't define or limit me, but it does at times influence what I can do. If I'm having a low, you would not want me to do your taxes. And, hmmm...I think you still can't be a commercial airline pilot.
"Diabetes needs more research & funding to find a cure." Absolutely.
"There is no such thing as a diabetes diet. Different things work for different people." True, there is no such thing as a diabetes diet. Not like 42 years ago when they handed me one and told me I could no longer eat candy bars. The diet recommended today for all Americans is also recommended for people with diabetes: lots of vegetables, some fruit, whole grains, low fat dairy, lean meat, healthy fats, occasional sweets. Personally, it's easiest to keep my blood sugar relatively stable when I eat low-carb, which I do.
DID YOU KNOW? "People with Type 1 diabetes must have insulin to survive." Absolutely. I'd also add having a loving spouse, furry pet and work or hobby you love is pretty important too.
"My family plays an important role to help me maintain my health." Hmmm…seems to speak to my point above. However, if you don't have family or that family, do it for yourself.
The more we educate ourselves, and the public, about diabetes, the better off we'll all be. If you really want to know about diabetes and how to take care of yourself, out of the goodness of my heart I can only tell you to get a copy of two of my books, "50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It" and "Diabetes Do's & How-To's."
As Oprah says, and I agree, absolutely, "The more you know, the better you do."
The other day I was browsing the wonderful cartoons of Haidee Merritt. Haidee contributed a number of her cartoons to my book, Diabetes Do's & How To's, and has often and generously sent me more for fun. We had a great time working together, she type 1 from the age of 2, me 18.
So, I was thinking why should I be the only one to have all the fun? Here's a joyful look at some of Haidee's published and unpublished cartoons. Enjoy.
Of course, for more fab cartoons you can go to Haidee's website and purchase her book, or get mine. Better yet, get both!
The American Diabetes Association just held it's 74th annual conference in San Francisco.
16,000 medical professionals, patients, exhibitors and trade people attended. Of course I would have made 16, 001 but I was in Phoenix attending my peer-mentor annual conference, the A1C Champions.
So, while I wasn't in San Fran, I've been following the research, science and encouraging shift highlighting patient voices posted on various web sites.
Here's are three if you want to catch up along with me:
This was on Facebook. This is not my Dexcom, but it could be. What struck me is how so many of us are compelled to put our numbers up and share them looking for comfort, camaraderie and someone else who "gets it." For when it comes to getting it, I believe much of the health care community is in denial.
We cannot "control" blood sugars in people with diabetes who use insulin. That's everyone with type 1 and some with type 2. But that frustrates health professionals; after all their job is to cure us, short of that to fix the problem - our up and down blood sugars.
But that is the very nature of diabetes - fluctuating blood sugars. And even with 24/7 oversight, no matter how hard I work at it, trying to do what a normal functioning pancreas does, I fail. My brain simply cannot replace a normal functioning pancreas.
I wrote about this recently on The Huffington Post in "Type 1 Diabetes Fully Explained." It went viral in hours. Hundreds of fellow Type 1s wrote to me saying how I had perfectly captured how impossible it is to perfectly control type 1 diabetes.
It is time for us to agree that the norm of diabetes, intrinsically, its very nature is up and down blood sugars, especially for T1D and insulin-dependent T2s.
It is time to accept this and stop trying to fight it and control it. I hate that word control. This doesn't mean that we shouldn't work at having blood sugars as often as possible in our target range, but let's agree it's hard and let's agree we can't be perfect at this and let's sigh a collective sigh of relief. We deserve it.
Furthermore, creating goals is the wrong way to manage diabetes. Goals reinforce the idea that if we only work harder we can lick this beast. But we can't. Goals reinforce that there is a perfect standard and we just aren't working hard enough if we haven't achieved it.
Rather, what we should learn is what to do with our numbers in the moment, keep breathing, and have the knowledge and no self-blame to do it - and then smile because we did something good for ourselves.
Funny thing, but given that blood sugars fluctuate all day and all night, we are much better off to befriend our efforts, both strong and weak, and behead the doctor who tells us our numbers "should" be better.
I want people with diabetes to hear from their health professional:
"This is tough. You have a condition that requires a lot of work and vigilance. Some days you'll do better than others. Don't beat yourself up, instead do your best as often as you can and know that the very nature of diabetes is up and down blood sugars. You cannot do this perfectly because your body will be doing something unpredictable a good deal of the time. Just know this, accept this and keep breathing. I for one honor what you do living with this everyday."
Every year Healthline, committed to providing health and medical information, tools, technologies and doctor-reviewed resources to patients and providers, votes for the Best Diabetes Blogs.
I think I've been awarded this honor each of the past several years for this blog right here on DiabetesStories.
My kudos to the fine and notable company I keep. All of these people and organizations are out there to help you, whether you have type 1 or 2, to learn, connect, commit to and improve your diabetes care.
Here's the list and a few sentences description of each - it's a great group to follow.
Thank you Healthline.
I have never been a fan of Katie Couric, particularly. But last night my husband and I saw her film,"Fed Up." and appreciated how she is bringing to light childhood obesity. While everything I heard in the movie I already know, it was still great to hear it again.
The plot of this documentary is the pure evil perpetrated on us by big food companies. Their mission is to make money for stockholders and they do it at the expense of our health. They push products out into the marketplace that are unhealthy but earn their shareholders megabucks. Featured in the film are the experts who have for decades alerted us to this situation including Gary Taubes, Dr. Robert Lustig, David Kessler and many others.
The devil is sugar. We eat it by the bucketful and it is hiding in practically everything we eat. While we know it in its natural form of table sugar, it's also in bread, pasta, rice and hidden in foods like ketchup, yogurt, spaghetti sauce, Hot Pockets, Pop-Tarts, waffles and on and on, well, it's just about everywhere, including the majority of our processed, refined food products.
It's truly a travesty and tragedy that the American government has sold itself out to the food lobbyists. How short-sighted is it that we allow people to eat foods that down the road will cost their health and their lives. And we will all be paying for their healthcare. The obesity rate has risen in parallel with the removal of fat from our food when we once thought fat was the culprit for obesity. But, you know, it is not. And, as everyone would like you to believe, "a calorie is a calorie," it is not. Different foods work differently in our bodies. The biggest take away is unused sugar turns directly into fat in your body. A calorie in is not a calorie out. Start eating healthy fats and stop eating refined, processed food-like substances as Michael Pollan will tell you.
The real tragedy is when you see what it is doing to our young people. When I went to school lunch in the cafeteria was homemade meals and my favorite, tuna fish sandwiches. Today, kids at school get 80% of their lunchtime food from fast food franchises - Pizza Hut, Taco Bell, McDonalds …they are truly up against it to find a healthy meal. Shame on the American government.
Food manufacturers know the earlier they hook a child on their food, they will form a lifelong customer. Thus, TV commercials and characters like Ronald McDonald are marketed to kids. It is criminal what we allow food manufacturers to do and put in the marketplace. It is simply immoral. It is costing all our health. To live healthy in America you have to be extremely vigilant.
If you're lucky enough to have an independent theater in your community, see the film. Then make a pledge to eat healthy - real foods. Stuff that doesn't come from fast food restaurants or out of bags or cans. It's not more expensive to buy a whole chicken and some vegetables to cook for dinner, than fast food chains would like you to believe.
I've said it before: food is medicine. Eat healthy, feed your family healthy, real food and let's not let the big food companies steal our health. This is our generation's battle just as tobacco was the battle before us.
Herb Meehan lost his vision in one eye due to diabetes. "I was a TERRIBLE diabetic," he wrote me. "I didn't test regularly and when I lost my vision something inside me snapped." Herb's snap caused him to spend two years creating an intelligent software and voila Nagbot was born - an avatar buddy currently helping hundreds of people with diabetes.
As Herb wrote, "I created Nagbot because way too many diabetics need encouragement to test regularly. I engineered this avatar into the application to be caring, like my wife, because not everyone has someone like that to help them." This cute little avatar Nagbot reminds people to test, stores blood sugar and a1c results, gives positive reinforcement and as Herb says, is just bad ass.
Below is some more info from Herb, including a bit of his story, and, Nagbot's future is hanging in the balance on Herb's Kickstarter campaign that you can be a part of.
Message from Herb
Lifebringer is a web application that is at home on your computer, tablet, and mobile device. Lifebringer goes beyond simply storing data. It's a diabetic journal, blood sugar test reminder system, test strip inventory manager, report viewer, and encourager.
What makes Lifebringer unique is Nagbot. Think of Nagbot as your virtual caregiver. Nagbot helps you remember to test. Nagbot talks to you in plain English (no medical jargon used). And if your blood sugar is too low or too high, Nagbot suggests what you should do. If it’s within range, Nagbot happily encourages you to keep it up, as in keep checking. Nagbot also sends reminders and reports to you if you ask him to.
I was diagnosed back in 1999 and was on oral meds for the first few years. I eventually had to ditch the pills and go with insulin to manage my diabetes. It wasn’t enough though. A few years ago, I lost vision in one of my eyes due to complications with diabetes. Simply put, I didn’t do enough. After that event, I became the model diabetic. My wife and I began eating healthy, home-cooked meals, and I now test regularly.
Why we don’t like diabetic journals
Let’s face it – data entry sucks. One of the chores of using a diabetic log is that data input isn’t fun. Lifebringer is easy and streamlined. Lifebringer doesn’t just collect your blood sugar information but will also forecast your A1c (a snapshot of the last three months of your blood sugar control). Here's a look:
We have turned to Kickstarter to fund this dream and we’re hoping to continue to help everyone else with diabetes. Please take some time to meet Nagbot. My wife, Maryam, and I would be incredibly grateful if you would and also share or tweet this news.
At a garden in Tokyo with friends on a rainy day
Last week I received an email from the American Association of Diabetes Educators offering 8 travel tips, "Have Diabetes, Will Travel." I thought I would post them.
I also asked AADE why there's no mention of how to adjust your dose if you take a long-acting insulin like Lantus or Levemir. You'll find that recommendation at the bottom after we had an email exchange.
Have Diabetes, Will Travel
No Reason You Can’t Enjoy Seeing the World – You Just Need to Plan Ahead
Just because diabetes is your constant companion doesn’t mean you can’t enjoy traveling, whether traversing America in an RV or flying to the far reaches of the globe. Ensuring you stay healthy and keep your glucose levels on an even keel does require a little bit of organization and planning ahead, though.
The American Association of Diabetes Educators suggests a plan of attack for ensuring your next travel adventure is safe and successful.
1 Over-pack your medications – Gone for a week? Pack two weeks’ worth of your diabetes medications in case of travel delays or misplaced supplies (insulin, syringes, testing strips, extra batteries for your pump, a first-aid kit, glucagon emergency kit, etc.). If you use a pump, ask the company if you can bring a backup in case yours fails. Have a prescription from your doctor for insulin or oral medication in case of an emergency.
2 Protect your supplies – Keep your medications and supplies close at hand and don’t put them in checked luggage or in the trunk, where they can be exposed to harmful extreme temperatures (too hot or too cold). If you’re flying, keep them in the original packaging (so no one questions they’re yours) in a bag separate from your toiletries, as requested by the Transportation Security Administration (TSA), which manages airport security. Don’t worry, the TSA allows you to go over the 3.4 liquid-ounce carry-on limit for diabetes medications and supplies.
3 Identify yourself – Wear your medical bracelet or necklace that notes you have diabetes and take insulin (if you do). Bring a doctor’s note that explains you have diabetes and lists your medications, as well as a prescription in case you need more. Carry a health card that includes your emergency contact and doctor’s name and phone number. Learn how to say “I have diabetes,” “sugar,” and “orange juice, please” in the language of the country you are visiting.
4 Carry snacks and low blood sugar treatment – Low blood sugar (hypoglycemia) can strike any time and food access during travel is unpredictable, so be sure to bring plenty of snacks such as peanut butter crackers, granola bars and trail mix as well as glucose tablets or gel.
5 Simplify flying – Tell the TSA folks that you have diabetes (they’re used to accommodating people with health issues). Visit http://www.tsa.gov/traveler-information/passengers-diabetesbefore your trip to learn about current screening policies. If you plan to inject insulin while flying, be forewarned – the pressurized air can make it more challenging to draw up your insulin, if using a vial and syringe, so be extra careful not to inject air into the bottle.
6 Test often – New foods, increased activity and different time zones can throw your glucose levels out of whack, so be sure to test frequently, including before and after meals. If you take insulin, keeping your levels steady can be tricky when changing time zones, so make a plan to adjust your schedule for injecting. Before your trip, see a diabetes educator, who can help you with this challenging process.
7 Favor your feet – Wear comfortable well-fitting shoes and socks at all times – never go barefoot. Check your feet frequently, especially after a hike or long walk. Feet and ankles often swell during flights so consider wearing light knee-high compression stockings (20-30 mm Hg) or bring thinner socks to change into if your feet swell. Wear a shoe that can be loosened if that occurs. Pointing and flexing your ankles during a flight can improve blood flow in your calf muscles and decrease swelling as well as lower the risk of blood clots.
8 Prepare for a health emergency – If you need medical treatment, ask your hotel to recommend a local doctor who treats diabetes. Prior to an overseas trip, get a list of local English-speaking doctors through the International Association for Medica1172l Assistance to Travelers at http://www.iamat.org/.
The secret to any successful trip is to take plenty of time and plan far in advance of your departure – and that goes double when you have diabetes. For more information about how a diabetes educator can help you plan your next trip, visit http://www.diabeteseducator.org/.
Sources: Centers for Disease Control and Prevention (CDC), American Diabetes Association and Joslin Diabetes Clinic
Regarding adjusting your long-acting insulin dose from AADE: “There are adjustments that many people make but we would not recommend any specifics. It's better to have your HCP guide you. Ask your HCP how to adjust your background insulin to account for the shortened day.
You may also want/need to do extra blood glucose checks during your trip for information as you make insulin adjustments, as well as to account for possible variations in food and physical activity while on your trip.”
I concur. I'd also add, if you're an old hand and feel confident about adjusting your dose, do a little experimenting. First, use your common sense. Second, keep checking:
If your day is going to be shortened, for instance, by 6 hours, take 1/4 less your normal dose. If your day is going to be lengthened by 6 hours, add an extra quarter. I take that extra quarter before I go to sleep after I've arrived somewhere because I take my Lantus at 9 AM. Then I start my usual dose again when 9 AM rolls around wherever I am. And yep, keep checking!
That's what I do but in all things diabetes what works for me may not be right for you. Mind you, I only take 8 units of Lantus a day and I'm insulin-sensitive rather than insulin-resistant.
I received this release from esteemed Gary Scheiner's Director of Lifestyle and Nutrition. Take the Carb Counting Challenge:
We all think we’re “experts” after years of label reading and WAGcounting. If you think you know your stuff, or just want to see what you do and don’t know, take The Ultimate Carb Counting Test from Integrated Diabetes Services. It’s free, fun, and you may win something!
Visit www.integrateddiabetes.com, click on Resources, and then choose Innovative stuff. The link to the carb quiz is at the bottom of the page. Take the test by yourself, with a group, or with the assistance of your friendly neighborhood dietitian. Write down your answers and e-mail them (with subject line “Carb Contest”) to Integrated Diabetes Services’Director of Lifestyle & Nutrition (and self-proclaimed guru of carbcounting) Jennifer Smith: Jennifer@integrateddiabetes.com. Be sure toinclude your full name, e-mail and phone number. Jenny will score your test and send you a personalized reply, letting you know how you did and where your strengths/weaknesses lie.
The contest is open through May 31st, 2014. In early June, the TOP 3 SCORERS will be contacted to receive $50 gift certificates to the restaurant of their choice. They will also have the opportunity to be interviewed and introduced as a Carb Counting King/Queen in an upcoming “Thinking Like A Pancreas” Blog.
So get out your food scales, Calorie Kings, and whatever else you think might help, and take the Carb Counting Challenge!
Integrated Diabetes Services is not responsible for any hunger you might develop while taking this test, or injuries you may sustain while arguing over the answers.
For more information, please contact Integrated Diabetes Services at 877-735-3648. Outside North America, call +1 (610) 642-6055.
Integrated Diabetes Services provides in-person and remote consultation for insulin-users looking to improve their diabetes controland self-management skills.
I've posted here before about holistic Dr. Rachel Naomi Remen. Herself a patient with Crohn's disease since the age of 15, most of her work in medicine has been with patients at their ends of their lives with cancer.
She has created a program, called Commonweal, for cancer patients to gather and experience healing, if not a cure. She has created The Healer's Art, a curriculum for doctors to gather and heal from their work: not being allowed to grieve for their patients, medicine's emphasis on science and dismissal of spirit and mystery, and from the medical system itself that stresses being an expert over being a person. It is taught in many medical schools now.
She has written books telling the stories of life, of healing, of what's important that she learned as a very young child from her Rabbi grandfather and as a doctor tending to her dying patients.
This passage I just read this morning from her book, My Grandfather's Blessings and it seems particularly fitting this weekend over the Easter and Passover holiday:
"Serving anything worthwhile is a commitment to a direction over time and may require us to relinquish many moment-to-moment attachments, to let go of pride, approval, recognition, or even success. This is true whether we be parents, researchers, educators, artists, or heads of state. Serving life may require a faithfulness to purpose that lasts over a lifetime. It is less a work of the ego than a choice of the soul."
I know so many people through this work who serve and I believe it is our path to wholeness.
I try, as a practice, to be kind, to be conscious and to leave people feeling a little better than before I wandered into their space. But it's a practice and I need to be reminded to be conscious on a regular basis.
The twelfth year of my 20-year overnight success: Broadening the bandwidth to Flourishing with illness
I just got back from the Netherlands. I went as a speaker in Novo Nordisk's 5th DAWN Summit. Doctors, patients, psychologists, policy-makers and researchers gathered from 33 countries for two days of idea-generation and planning how to improve the lives of people with diabetes. I met wonderful people equally committed to help people with diabetes live fuller, healthier, happier lives, including a noted Dutch psychologist, Frans Pouwer, who hearing of my Flourishing Approach now wants to research it.
While in the Netherlands, I was also invited to speak to the leadership team of AstraZeneca, NL. AstraZeneca acquired Bristol-Myers Squibb and now diabetes is one of their largest market sectors.
For the past few years I've been noticing, increasingly, we live in a time I'd call "The Rise of the Patient." As patients, we are leaders in our own right living with an illness, and many of us have insights and capacities to help transform healthcare delivery for chronic illnesses. My own work toward that is sharing with health professionals how to work from a Flourishing Approach, as opposed to the traditional Coping Approach. And for people with illness, to live from the same orientation. I shared the Approach with Ginger Vieira in this recent post, "From Coping to Flourishing: How a Better Mindset Can Transform Health."
Every year since I've been working in diabetes I've said, "I'm in the first year of my 20-year overnight success." Of course each year it increases by one. Now I am in the twelfth year of my 20-year overnight success - and I feel the traction: of my own success, of the power of the patient and of minds opening to the idea that we have to do chronic illness differently. Actually, I have been sharing the Flourishing Approach over the past several years at various conferences e.g. the American Association of Diabetes Educators', TCOYD, DiabetesSisters and each time I am met with enthusiasm and respect.
In the past few months I have received many opportunities to share the Flourishing Approach and its tools around the world. In December in Melbourne, Australia at the IDF World Congress, where I addressed 134 Young Leaders in Diabetes on behalf of Novo Nordisk. A few weeks later, at the Royal Prince Alfred Hospital in Sydney where I addressed the endocrinology department.
In January I spent 18 days in Bangalore, India where I gave six classes and workshops to health professionals at the Jnana Sanjeevini Medical Center, a diabetes clinic for the poor. I have also addressed more than 200 medical professionals at two premiere hospitals in Singapore. Two years ago I gave a workshop for health providers of the Pascua Yaqui tribe. It was held over two days and the second day patients joined providers and together barriers dropped, communication opened and both saw a new space open in front of them.
In March of this year I presented the Flourishing Approach to the Telehealth group of NYC Health and Hospitals Corporation. There a staff of committed nurse/coaches speak weekly to people with diabetes in need of help. They, like all I have spoken to, have been delighted to hear this more positive approach and are interested in applying it in their coaching practice with patients.
I have written a number of articles on this approach. "A Flourishing Approach to Mental Health in Patients with Diabetes" in last summer's issue of the peer-reviewed On the Cutting Edge. Two recent articles on The Huffington Post include, "Chronic Illness' Opportunity for Patients and Providers" and "The Antidote to Living With Diabetes." There will shortly be an upcoming article on Sanofi DX. And now I feel fully confident that I have enough research, tested the waters and seen everywhere I present this new framework/lens and way of working and living, providers and patients have only wanted more.
So this year I will be writing my next and fourth book on flourishing with diabetes. It will provide the understanding of a flourishing framework and how - and why - we need to treat people with chronic illness differently than we do today. Moving from problem- to solution-focused. To look at what's working instead of what isn't, work from a trusted partnership, be compassionate, see the whole person and understand the context within which they live, not merely micro-manage the disease.
We must offer hope and possibilities, knowing the power of both and that there is post-traumatic growth, not only post-traumatic stress. We must explore patients' strengths and resilience, as we help them move toward a healthy, happy, vigorous, robust and purposeful life.
For twelve years I have said, "You can have a great life, not despite, but because of diabetes." Because people shared with me this is how they were living.
We can open a doorway to a new space to be with patients, and a new space for people with illness to be in, where coping is not the target or the answer, but flourishing is.
It is time.