My Dexcom 7 CGM and I have had nine days and nights together and we've parted ways. And, as if it knew I was not happy with it, it gave me one last kick in the teeth coughing up its last numbers.
I met a friend today for brunch in Manhattan. I walked from my apartment in Brooklyn over the Brooklyn bridge and then took a subway to the cute little Italian bistro where we were meeting. The walk took about 90 minutes.
After being seated and looking at the restaurant menu I took out my meter and tested. I was "80." I took the CGM receiver out of my pocket. I was "80." Unbelievable! This is the first time since CDE/Pump Trainer, Gary Scheiner, slapped the sensor pod on me last week in Philadelphia - and I carried it across state lines - that both showed the same number.
I know the CGM's numbers are not expected to match up precisely with your meter numbers. I know the CGM tests interstitial fluid and not blood glucose and there's a difference. I know there's a lag time on the CGM of 15-20 minutes. I know you're not supposed to make dosing decisions off the CGM. I know that meter readings vary up to 20%. I've also learned that means if you test on your meter and get 80 and you test immediately again, you might get 80 or you might get 68 or 92 or 104. I know all this, yet after its first week of so many misses, the CGM immediately won back my trust, and my hope, with that "80."
Two hours later after a fairly low carb lunch my friend and I were strolling around and the CGM read "180." Hmm...I thought, well I did have a few roasted potato pieces and a half a plain cookie the waiter brought along with the bill, maybe I need another half unit, so I took it. Then my friend and I spied a new concept yogurt store where you make your own frozen yogurt and toppings so of course we had to go in and see. And we had to put that tiny paper sample cup under the raspberry and peanut butter yogurt.
Now walking back to my friend's car I reached into my pocket to see what number was on the CGM. It said "222." Hmmm...well I had just had what was probably a quarter cup of frozen yogurt, guess I need another 1/2 unit, which I took.
Sitting on the subway platform 15 minutes later waiting for my train home a thought came barreling through my head...hmmm..."222" ... I'm hardly ever over 200. Let's see what my meter says. My meter said, "108." My meter also said, "What the hell are you doing dosing off your CGM!!! You know better than that!!!" Surely I do, but I had forgotten in the romantic glow of that "80" when the CGM won my heart back at lunch. I so wanted to be in love with my CGM just like the many people I've talked to are with theirs.
I pulled the CGM display out of my pocket and went to enter the "108" to calibrate it and it gave me an error reading. It actually said, "ERR" which is just how I felt, especially if you add a few exclamation marks, "ERR!!!." When I got home a half hour later, I looked through the booklet and saw my sensor was done, and it had had the last laugh all the way to its untimely end.
A CGM? Not for me. Not until its accuracy is twice what it was for me. About 50% of the time it was tracking 10 - 20 points apart from my meter, the rest of the time it was anywhere from 20+ to 75 points away. It alarmed me telling me I was "53" when my meter said "85" and it fooled me into trusting it so many times.
I wanted to love you CGM, truly I did. But I'm going to wait til another generation or two comes along. Until a CGM is really ready to love me back. For now I'm sticking to finger sticks, and running for the juice!
If you read my last post you won't be surprised that I just spent 4 days in Philly at the Second World Congress on Positive Psychology sponsored by ippa - International Positive Psychology Association.
ippa promotes the science, practice, collaboration and communication of positive psychology. Let me tell you first, that doesn't merely mean thinking good thoughts.
In a nutshell, positive psychology is a practice and a means to greater well being and happiness. The road is largely composed of: Being engaged more of the time in positive emotions (love, play, curiosity, compassion...) than negative ones (fear, guilt, shame...); Being engaged with life - you know those times when you lose track of time because you're in "flow" with whatever you're doing; Enjoying loving and supportive relationships; Having meaning/purpose in your life; Having a sense of accomplishment.
In a practical sense, it also involves discovering, focusing on and using our strengths (you can take a survey here), being engaged in a mindfulness or meditation practice and being solution-focused rather than problem-focused.
The conference speakers were the world's heavyweights in the field including psychologists and PhD's Martin Seligman, Barbara Fredrickson and Ed Diener (these are merely the names I remember) as well as scientists, neurobiologists, university professors, psychologists, you get the idea. We participants were largely 1200 therapists and coaches from 62 countries around the world. I was indeed struck by the amount of Australians, Asians and Europeans who'd made the journey.
In general the conference is a coming together to share scientific research that validates the positive effect of positive psychology.
There was so much to take away after 4 days of back to back lectures, workshops, and symposiums that I, and my mind, are rather exhausted. But these are a few things I took away:
1. Positive psychology is not just about being positive. It's about living with your full range of emotions - including the negative ones - in a healthier way. Or as Dr. Fredrickson would say, it's about using your positive emotions to broaden and build your resources, skills, connection to others, flexibilty and perspective to create greater well being and happiness.
2. Meditation and mindfulness do increase biological (slow and strengthen heart rhythm, increase circulation, lessen inflammation) and psychological health (increase compassion and awareness, make your thinking more open, quicker to see solutions) - and, it's high time I got back to a regular practice.
3. If people are not ready to change behavior, they need information not persuasion. If they're ready they need a plan and if they're taking action they need to know how they will prevent relapsing back into their old behavior.
4. Focusing on what you want is a much more compelling strategy to move forward than avoiding what you don't want.
5. "Coping" is a word that signifies "less than." Whereas "thriving" and "flourishing" are words that signify "more than."
6. Love is the seed that forges bonds, weaves social fabric, promotes health
I'll also give you three things you can do right now and on a daily basis to up your Positivity Quotient and create greater health - and you can do them without attending a conference or reading a book:
1) Reflect each evening while falling asleep on 3 things you are grateful for or that went well that day
2) Give out more praise and compliments than you do criticism
3) When you get angry, catch your breath, pause, and try to see the person who's making you angry, not what they just did. We are all caught up in the stresses of life. Slow down and change or reframe the interaction.
My mind and my heart are all about this field and it's a strong place to work from for anyone who has, treats or coaches anyone with a chronic illness. The next conference in the U.S. will be in two years. Maybe I'll see you there.
I gave two workshops at the Friends for Life annual conference last week (see post below) and collected feedback from my attendees which I promised to share.
In my workshop, "Flourishing with Diabetes" I asked everyone to write down ‘1 positive thing diabetes has given me.’ At the end of the workshop each person stood and shared what they had written. Each person - remarkably, or maybe not, no one hesitated or came up empty.
I collected 35 ‘things’ and using the affinity diagram method broke all the comments into 5 categories: Greater Health - 4; Closer Family Ties - 5; New Friends/Community - 9; Empathy/Compassion/Understanding For Others - 9; Self-Resilience – 7.
• A greater awareness of health for the whole family
• Appreciation for the need to take better are of myself: eat better, quit smoking, more exercise
• Health consciousness
• A strong understanding of nutrition and portion control - general good eating habits
Closer Family Ties
• Brought my 17 year old daughter and me much, much closer than what we would be without it
• Stronger relationship with our daughter who has type 1 diabetes
• A close knit family caring, loving, supporting each other
• Made me a more attentive parent
• United my family around a common issue and learning together
• Good friends and the ability to accept their love
• New friends, travels, closeness with my daughter
• New lifelong friendships (more like family) for me and my children
• Lots of great friends who want to stop diabetes!
• New friends for myself and for my daughter
• Friendships that I have made
• FFL, CWD, friends and role models for my daughter
• A community. A voice. A sense of humor
Empathy/Compassion/Understanding For Others
• Compassion for parents dealing with children that have a health challenge
• Patience and a drive to care for and inspire people who need help
• A better understanding of what my sister has dealt with for 25 years (after my son's diagnosis)
• A chance to be sympathetic with others who go through similar things or difficulties in life
• Wisdom to help my daughter who has a serious chronic mental illness
• Additional empathy and patience
• Empathy & compassion for people who have kids with other chronic conditions
• Greater empathy for parents and children with health issues or disabilities
• Courage to know I can help when my Person with Diabetes needs me
• Insight-single mom of a 9 year old realizing I can do this for my daughter
• Perseverance, ability to deal with and solve problems
• Ability to let go
• Perspective on what is really important in life
• Showing me that I am capable. I can do it
• A good sense of responsibility early in life
And Mine: The opportunity to do this work
In my workshop, "inspired Diabetes Self-Management" we discussed how Healthy Habits help you work smarter managing diabetes. Again, I asked everyone to write down 1 healthy habit they have and share it. I collected 17 healthy habits and they break down into: Food – 7; Exercise – 4; Blood Sugar Monitoring/Site Change – 6
• Drink water before each meal
• Keep an accurate carb count @ breakfast
• Measure everything
• Eat as healthy as possible
• Pack a lunch every day
• Try to be supportive in food choices
• Choice foods to balance out certain spikes
• 1 hour of activity a day
• Variety in exercise
Blood Sugar Monitoring/Site Change
• When in doubt, check
• Don’t hesitate to change site
• Remember, diabetes #s are just data!
• CGM helps my daughter test more
• My daughter checks her blood glucose every time immediately before starting the car
• Set blackberry for every three days for catheter change
You might like to ask what 1 positive thing has diabetes given you, and find it useful to write down your healthy habits, and borrow any of these listed here.
“Basal and Bolus aren’t Disney characters,” laughed Jeff Hitchcock gently chiding my husband. We were standing in the Disney Coronado Springs hotel on the last evening of Children With Diabetes’ (CWD) annual ‘Friends for Life’ (FFL) conference.
Each year Jeff Hitchcock, CWD’s founder and Laura Billetdeaux, who's grown this haven for families who have children with type 1 diabetes (from 500 to 3,000 attendees) host a 4-day educational, recreational, Disneyworld-hopping and bonding event. And sure enough, kids go away with new friends for life. For the first time this year adults with type 1 diabetes were also invited and I'd bet they also made some new friends for life.
I was there to inspire parents and fellow patients through three presentations/workshops I gave, including one sponsored by Roche. I also love catching up with the friends and colleagues this unique event brings together every year.
From my two workshops, "Flourishing with Diabetes" and "inspired Diabetes Self-Management" I collected Positive things about living with diabetes and Healthy habits and will post them later this week.
The event kicked off with the opening of the exhibition hall. No exhibition hall I've walked exudes more passion and unbridled joy than the one at FFL. Later that night, the tweeters were outside in full force lighting up the internet en masse. Among them were Scott Johnson, Kerri Sparling, George Simmons, Lee Ann Thill, Scott Strangeand the folks from Diabetes Advocates,which actually includes me.
The next morning I was on the roster early to talk about the mindsets we hold living with diabetes - coping and flourishing - and how to move more in the direction of flourishing. At the end of my workshop I met a new attendee, I want to say Becca, but forgive me if I got her name wrong. What I do remember is she's one of the many dogs being trained to detect high and low blood sugars, how incredible!
I attended a few presentations in the afternoon and striding the long corridors filled with red-shirted 'Friends for Life' t-shirts, bumped into pump-trainer/CDE Gary Scheiner, J&J's Paul Madden, TCOYD's Bill King and family therapist, Joe Solowiejczyk.
Joe was utterly surprised on banquet night by a celebration in his honor - he reached 50 years living with diabetes this year. And as he said so touchingly in my "Flourishing" workshop, he was somehow holding onto the idea that at 50 years it would all be over, and was sorely disappointed to realize it wasn't. When I heard him say this I thought, yes, I can well imagine feeling the same 11 years from now.
Crystal Bowersox got the house rocking on the last evening playing guitar and singing on stage. Her introduction by DRI VP and dLife's "Diabetes Dad" Tom Karlya, was not to be missed. Her music is rich and soulful and she was facile interacting with the kids all gathered at her feet. At 26 years old, she was a perfect young mascot for them.
The conference closed with an inspiring speech by Jay Hewitt, type 1 Ironman Traithlon athlete. I will take away three things he said that resonate with me: "Turn the bad thing that happened to you (diabetes) into the best thing that's happened to you. Each day work toward your personal finish line whether anyone's looking or not, and failure is a part of succeeding. Don't let it stop you." While I think you'd have to be crazy to swim 2.4 miles in the ocean, bike 112 miles and then run 26 miles, (an Ironman triathlon) it's all the more unbelievable that Jay does it again and again with type 1 diabetes.
The best way to share the event is in pictures of course, so here are a few of the hundred my oh-so-proud husband took.
Here is also a salute to the roster of sponsors, and all who come every year, presenters and attendees, to learn, hug, laugh and draw strength and inspiration for the days in-between July's annual FFL conference.
Thank you Jeff and Laura. Thanks also to Roche for sponsoring my presentation, "P is for Perfection and Knowing It's Not The Goal."
Becoming more self-sufficient
As we gather over the grill with family and friends, hoist a few or compete in the hot dog eating contest on Coney Island's boardwalk, I'm also thinking about how we move toward greater independence living with diabetes.
I shared the article below about the value of peer-mentoring with Mr. Teng Liak, the awe-inspiring, forward-thinking CEO of the new outstanding hospital in Singapore, Khoo Teck Puat Hospital, where I visited in May.
Mr. Liak wrote back, "The world has completely changed under us. For the first time in human history, good quality information and knowledge is available 24/7 for free to everyone. We, the so called "experts," no longer have the monopoly to knowledge. Great big headache for those living in the past. Great opportunities and relief for those willing to take full advantage of the changed environment."
I couldn't agree more. It's also an opportunity to health care providers to babysit their patients less and patients to take treatment into their own hands, as HCPs recognize their patients as experts - on their condition, particularly if chronic, and their life, and as patients realize their responsibility in their treatment. That to me is diabetes-independence. Those who participated in the peer-mentoring study below, joined with a fellow patient trained to help them, and then became more able to help themselves. Again, independence.
A crucial key to independent living with diabetes is continued learning. In support of that I'm off this week to Children With Diabetes' annual conference 'Friends for Life.' I'm giving three programs - one on flourishing with Diabetes, another on inspired Diabetes Self-Management and another on tools to live our best life. is at the biggest gathering of parents of children with type 1 diabetes, and this year for the first time, type 1 adults.
When I went in 2007 it was enough for me to just walk the halls and help parents frightened for their children see that they can grow up and have healthy, happy - independent - lives. I'm looking forward to that again.
I also love that Friends for Life is a unique and charged environment for friendship, support and learning, and that we get to gather and hang awhile with those who "get it" and then go off - often with friendships that last a lifetime - and though them stronger than before.