The Burden of Diabetes Supplies

As we wrap up our 2015 Calendar year, one of our big to-do lists is to order as many T1D supplies as we can.  Our deductible has been met and as a result, our out-of-pocket expenses are minimal.  Minus Continuous Glucose Monitoring (CGM) supplies, we pay nothing.

But yes, we still pay for our CGM - despite the deductible allowance being met.

It's one of the chronic disease biggest burdens we shoulder.

And we are not alone.

(( Shameless plug to write to your US senator to ask our government to recognize CGM use as a medical necessity for Type 1 Diabetes care by supporting bill  “The Medicare CGM Access Act of 2014” (S. 2689). )) - CLICK HERE




The cost from CGM is akin to several luxury items or a substantial annual vacation.

Having two daughters that both utilize CGM daily, means that we are using a new sensor roughly every 1-2 weeks.  Each sensor is $100.00 and a box of four is roughly $400.00.  One box for each daughter means that cost multiplies to $800.00 a month.

The additional expense for using CGM include an annual receiver charge of $500 per child plus a multi-year transmitter cost of another $1000.00 per child.

Dexcom CGM

Medtronic CGM

The reality is to keep both girls on their life-saving, medically necessary, continuous glucose monitors, the usage cost amounts to a whopping $12,600.00.

It's a dilemma for many.

What would you do with almost $13,000.00?

What if the choice was to remain healthy and well, alive?

Clearly there is no amount of money that would compete with life-saving technology, especially when it depends on your child's life.

The irony of our predicament is that by using this technology, we have avoided costly in-patient hospital visits, expensive out-patient clinic hours and even additional prescription costs from emergency supplies such as Glucagon.  Despite being diagnosed with Type 1 Diabetes, our children are healthy.  I am convinced that this is in large part to our steadfast CGM use since 2007.

If you have a moment, use the link above to share your own CGM story.  If you have been able to cover the costs or even if you haven't, everyone should have their voices heard.  Truly, we can #makehealth.

It's been a long time coming.

Please continue to VOTE for Naturally Sweet Sisters @peds2040 for the Diabetes Emoticon App.  We need your help to secure a spot on the Innovation Beach (mock) Shark Tank.  The girls say thank you!!!

Shaping Your 2016 New Year - No Limitations, No Boundaries

My cousin recently posted a thoughtful Facebook comment regarding her plan for the upcoming new year. Having a marketing background, she said organizing was part of her nature by creating a yearly vision statement, complete with a theme and tone.  She further noted how helpful it has been as a guide to provide direction and consistency to achieving personal, family and even professional goals.
Oddly enough, I do it too.  Maybe you do as well.

Our family vision for 2015 was 'The Year of the Adventure."

For the four of us, it provided a consistent reminder of what we wanted to achieve.  Mostly, we wanted to break out of our comfort zone (as I have often said, I know we are safe with T1d when we are at home together) and try new things, albeit safely with T1d.  Whenever one of us felt unsure of an opportunity, we referred back to our January theme and reminded ourselves that this was truly 'The Year of Adventure'.

As a result, I took a leap and tackled projects that required tapping into my professional life, shifting responsibility and even several solo travel adventures.  The Naturally Sweet Dad sought and earned a new challenging professional position while managing our home during my absence.  Our oldest ventured off to not only a brand-new high school but sought to earn and complete a trip to Washington D.C. through iCAN and TAC,  position as Student Council Class Treasurer, Student Government, Key Club and Varsity Girl's Golf - all new experiences.  In turn, our youngest daughter started a new junior high school, applied and achieved a spot on the yearbook committee, the local theater troupe and volunteering as a mascot for her sister's golf program.

Whew!  Truly, it was a year of adventure.

Through those experiences, all four of us achieved personal and family growth.  The Naturally Sweet Dad renewed his multi-tasking skills as an amazing professional leader and home master organizer.  I learned that I still have some ninja-Jedi brain power leftover from being a mom and can keep up with the big kids.  And well, those girls - they just beamed through each achievement.  One of my favorite quotes was our oldest acknowledging how happy she is.

Our family vision for 2016 is "No limitations, No boundaries."

As the Naturally Sweet Dad and I discussed, the only limitation is our perceived notion of what our boundaries are.  We hope that we can create a paradigm shift within ourselves to show that we can do anything we set our minds too.  It's especially important as T1d often feels as though it imposes restrictions on the how, what, where and why.  While the girls remain with us through the last leg of childhood, I want to ensure that we not only talk about being able to do anything you want, but also, model the same behavior within ourselves.  

We can do it!  Raising our glass in a toast to ALL OF YOU too!  Remember "No limitations, No Boundaries!"



What is your vision for 2016?  We would love to hear from your inspiring perspective.

Please drop a line, leave a comment, Tweet @natsweetsisters or chat on Facebook.

Please continue to VOTE for Naturally Sweet Sisters @peds2040 for the Diabetes Emoticon App.  We need your help to secure a spot on the Innovation Beach (mock) Shark Tank.  The girls say thank you!!!

We Need Your VOTE for the Diabetes Emoticon Project for Innovation Beach at Peds2040

Over the last two years, the girls have been involved in a collaboration with Dr. Joyce Lee, Pediatric Endocrinology at the University of Michigan, Mott Children's Hospital.  You can read more about the project known as the Diabetes Emoticon App HERE and HERE.

As a result, the girls will be heading to represent young patients at Peds2040.org.  You can read more about that HERE.

Now for the really exciting part... the girls have an opportunity to appear on a mock Shark Tank through the conference that is entitled Innovation Beach. 

If you didn't have a chance to see their video, you can check it out HERE.  

For the first time, the youngest patients have the ability to have their voices here.  Thanks in part to wonderful, creative and talented adults like Dr. Lee that recognize that great ideas can come from anyone - no matter how old.  

That concept is truly inspiring.  

Let's help get the message out!  Please VOTE!

Please VOTE for the Diabetes Emoticon App through January 7th, 2016

From Naturally Sweet Sister's Facebook Page:  "Please help Reece and Olivia, and our wonderful Dr. Joyce Lee, Pediatric Diabetes, University of Michigan, Mott Children's Hospital by voting for the Diabetes Emoticon App for Innovation Beach at peds2040.com. If securing a popular vote, the Naturally Sweet Sisters will have a chance to pitch (like a mock Shark Tank) the Diabetes Emoticon App concept in front of providers, investors, health plans, and representatives from the most innovative pediatric hospitals worldwide. The goal is to share the positive outcome of health care innovation from the collaboration of the youngest patients and doctors. This is an amazing opportunity and the girls would love your help to make it happen. You can vote daily from now until January 7th, 2016."

To give them the chance and to show the world on 

worthy the idea of the Diabetes Emoticons are, we need

 your VOTE!  Click HERE to cast a VOTE for 

Naturally Sweet Sisters!

Or you may cut and paste the website directly into your

 browser at https://peds2040.org/innovation-beach/

Just scroll to the bottom of the page and select 

'Naturally Sweet Sisters', then press VOTE.  

That's it!  And please vote once each day intil January 7th, 2016.  I will be updating both Twitter @natsweetsisters and online with updates as to the progress.  If the girls win, they will be notified on January 8th, 2016.  

You can also reach out to Dr. Lee on Twitter @joyclee to learn more about her #makehealth and her wonderful approach to creating improvements within healthcare. 

Please SHARE with EVERYONE and many, many thank-you's from our Naturally Sweet Sisters.

Three Little Gifts

Our girls have been busy working on interventions for improving health care this week.

Together, they wrote, directed and produced three unique videos to share on behalf of all kids that live with chronic health care.

The goal of their videos is to share aptly titled "Kid Innovations" at the Pediatrics 2040 Conference in January.  The conference will offer a four-hour learning session for kids to work with professors, doctors and researchers on development and implementation of ideas.

Both girls hope to encourage change by providing other adults within the medical and educational community a perspective of simple ideas that would make a world of difference in the eyes of a child.

As we all know, the psycho-social burden of a chronic disease is often greater to overcome than the physical side.  We can treat type 1 diabetes with insulin and go about the day.  Unfortunately, there is still much more than a prescription to cope with.  From the girl's perspective, they feel stress at having to discover better ways to manage T1D in real life, worry over the long wait at a clinic appointment or even frustration with having to re-tell adults what they are doing to manage type 1 diabetes.


Click on the link to watch the videos or visit Naturally Sweet Sisters on Youtube:

https://www.youtube.com/results?search_query=naturallysweetsisters

Big Book Of Diabetes Hacks:  From Kids for Kids

The Clinic Room:  From Wait to GREAT!

Diabetes Emoticon App

While it may not be perfect and it is certainly not a cure, it is their own way of giving the world three little gifts to help spark change.

We hope you enjoy their Naturally Sweet Sisters videos. 

Life is Good, Better, Best

Well, dear friends...  I think I can finally take a breath and exhale.  Our little wooden advent calendar has only a few more closed doors.  Most of the extended family gifts have been distributed.  Parties have come and gone.  School ended on Friday for a much-needed two week hiatus and this morning, our little family actually slept until 9:00 a.m. - with solid blood sugars!!!  

Life is good.  

I love when we are able to carve out a bit of calm in the middle of the holiday.  To me, this is the perfect opportunity to really enjoy the season.  No rushing, no chaos.  Just our family and our ever present thankfulness of keeping 'the happy' in our lives despite the ups and downs that T1D often brings.  

For many newly diagnosed families, I thought it might be helpful to share one of our most-referred to posts on navigating Christmas morning while living with Type 1 Diabetes.  Click HERE to read about how we handle the early morning excitement.  

To all of the seasoned T1D families out there, my hope is that you allow yourselves a moment to quiet and hush the all of the extraneous activities demanding your attention.  I know for myself, that the longer I continue this journey with T1D, the more that I forget that I am allowed to take breaks to center and balance my mind.  

Yes, we are skilled at fitting T1D into our lives.  

Yes, we can ninja count carbs on things like Eggnog, Sugar Cookies and Puppy Chow like no body's business.  

Yes, we can silence an impending low in less than five minutes thanks to the ever present full-sugar Cranberry Ginger ale our friends are serving.  

Yes, we can discreetly manipulate an infusion site change sitting in a dark movie theater and still eat that box of popcorn before the opening credits roll.

Yes, we can really party like it's 1999 - well until midnight, maybe.  After that, I am pretty tired.  :)

Life is Good

However all of those extraordinary skills require extra energy and extra time to stay mentally and physically afloat.  I would be miserable if I thought I had to keep up at that pace all of the time.  In fact, I would be fooling myself by thinking that is what I was supposed to do ten years after diagnosis.  

The reality is Life is Good but Life is EVEN BETTER when we take a break.  

We all need to recharge our batteries and to recognize that while we can do ANYTHING we choose to do with T1D, we also can be much more effective after having some downtime.  Maybe you use that time to reconcile blood sugars.  Or maybe you use it to squeeze in a nap.  Or maybe just to 'be' and relish how kick-ass you have been through all of the holiday mayhem.  Whatever it is that you NEED, be sure to allow yourself the opportunity to do it.  

Allow your life to go from Good to Even Better to the BEST.

Merry Christmas from our house to yours... 

Love, The Naturally Sweet Sisters

Pediatrics 2040 - Will You Be There?

Our Naturally Sweet Sisters are preparing for the upcoming Pediatrics 2040 Conference in Laguna Hills, California from January 6th - January 9th, 2016.

If you haven't heard about the amazing brainpower of #doctors, #makers, #experts that are creating change within the medical community, please hop over to http://www.peds2040.org/ and check out the speaker line-up.

The agenda is below and you will not be disappointed by the wonderful assortment of topics - especially the Young Innovators Workshop - a program designed for kids to share ideas of improvement within the medical community.  This is a hands-on event in which kids will team up with researchers from around the US - including Stanford and Orange County Children's Hospital (OCCH) to discuss ideas, create a mock up and follow through with implementation.

DAY 1

06 Jan 2016

DAY 2

07 Jan 2016

DAY 3

08 Jan 2016

DAY 4

09 Jan 2016

2:00 PM - 4:00 PM

DON LOMBARDI

NAOMI FRIED, PHD

LYLE BERKOWITZ, MD

LAURA BEKEN

WORKSHOP A: INNOVATIONS IN HEALTH CARE DELIVERY

From Idea to Reality for Innovators – This workshop will provide background concepts in innovation in health care and also review case studies in innovation in pediatric health care.

Don Lombardi

Naomi Fried, PhD

Lyle Berkowitz, MD

Laura Beken

2:00 PM - 4:00 PM

RYAN TAFT, PHD

LEONARD S SENDER, MD

SPYRO MOUSSES, PHD

WORKSHOP B: GENOMIC & PRECISION MEDICINE

Essential Concepts in the Current Era – This workshop will review basic concepts of genomic medicine from DNA sequencing to clinical interpretation and personalized medicine.

Ryan Taft, PhD

Leonard S Sender, MD

Spyro Mousses, PhD

2:00 PM - 4:00 PM

SHARIEF TARAMAN, MD

DAVID ODGERS

KEN FERRELL

JAMES DZIERZANOWSKI, PHD

ANTHONY CHANG, MD, MBA, MPH

WORKSHOP C: ARTIFICIAL INTELLIGENCE & BIG DATA

From Big Data to Deep Learning in Health Care – This workshop will introduce all relevant topics in the use of artificial intelligence in medicine, including data mining/ predictive analytics, cognitive computing, and deep learning.

Sharief Taraman, MD

David Odgers

Ken Ferrell

James Dzierzanowski, PhD

Anthony Chang, MD, MBA, MPH

2:00 PM - 4:00 PM

SCOTT HOLLISTER, PHD

ROBERT GULDBERG, PHD

WORKSHOP D: REGENERATIVE MEDICINE & 3D PRINTING

Uses of 3D Printing Techniques in Pediatrics –  This workshop will look at the innovative new ways that 3D printing can be applied for diagnosis and therapy in children.

Scott Hollister, PhD

Robert Guldberg, PhD

2:00 PM - 6:00 PM

LEANNE WEST

KEZIA FITZGERALD

YOUNG INNOVATORS WORKSHOP

Leanne West

Kezia Fitzgerald

4:00 PM - 6:00 PM

DON LOMBARDI

NAOMI FRIED, PHD

LYLE BERKOWITZ, MD

LAURA BEKEN

WORKSHOP A: INNOVATIONS IN HEALTH CARE DELIVERY

From Idea to Reality for Innovators – This workshop will provide background concepts in innovation in health care and also review case studies in innovation in pediatric health care.

Don Lombardi

Naomi Fried, PhD

Lyle Berkowitz, MD

Laura Beken

4:00 PM - 6:00 PM

RYAN TAFT, PHD

LEONARD S SENDER, MD

SPYRO MOUSSES, PHD

WORKSHOP B: GENOMIC & PRECISION MEDICINE

Essential Concepts in the Current Era – This workshop will review basic concepts of genomic medicine from DNA sequencing to clinical interpretation and personalized medicine.

Ryan Taft, PhD

Leonard S Sender, MD

Spyro Mousses, PhD

4:00 PM - 6:00 PM

SHARIEF TARAMAN, MD

DAVID ODGERS

KEN FERRELL

JAMES DZIERZANOWSKI, PHD

ANTHONY CHANG, MD, MBA, MPH

WORKSHOP C: ARTIFICIAL INTELLIGENCE & BIG DATA

From Big Data to Deep Learning in Health Care – This workshop will introduce all relevant topics in the use of artificial intelligence in medicine, including data mining/ predictive analytics, cognitive computing, and deep learning.

Sharief Taraman, MD

David Odgers

Ken Ferrell

James Dzierzanowski, PhD

Anthony Chang, MD, MBA, MPH

4:00 PM - 6:00 PM

SCOTT HOLLISTER, PHD

ROBERT GULDBERG, PHD

WORKSHOP D: REGENERATIVE MEDICINE & 3D PRINTING

Uses of 3D Printing Techniques in Pediatrics –  This workshop will look at the innovative new ways that 3D printing can be applied for diagnosis and therapy in children.

Scott Hollister, PhD

Robert Guldberg, PhD

There is still time to register too.

Our Naturally Sweet Sisters will be representing Dr, Joyce Lee, Michigan Hackers, University of Michigan Endocrinology, #Makehealth, Teen Advisory Council (TAC), Mott Children's Hospital, iCAN, JDRF and the community of #teent1d.

Stop by our booth and say hello.  We would love to meet as many of our online friends and families as we can.

We hope to share ideas and inspire others that anything is possible through collaborative health care.


Hope to see you there!!