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Posts from the ‘Guest Diabetes Blogger’ Category

Guest Post: Becoming a CDE.

Abby has been busy.  Busy doing what, you ask?  Earning her certified diabetes educator credentials!  And she’s done it!  (Congratulations, Abby!!  Hard earned, and well deserved.  The diabetes community is lucky as hell to have you in both the peer and healthcare professional capacity.)  Today, Abby has returned to guest post about her journey in becoming a CDE. 

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So remember WAY back when I used to talk about how I wanted to take and pass the CDE exam and then work as a pediatric diabetes educator?

Well, it happened. I’m not writing to brag or make you all jealous (though if you are, I don’t blame you; my job is awesome) but more so because I wanted to follow up on the process now that I’m at the end of it.

You can find the requirements toward becoming certified on this website … which is all well and fine, except they seem unattainable for most of us. I had a lot of people contact me when I started my journey asking how I was going to obtain the hours, how I was going to study, when I would take the exam, and how on earth I would find a job in this field. Here is how I did it (and by no means was this path anything short of lucky and filled with connections).   It may stir up some ideas for you out there looking to sit in my seat (actually, please don’t – I finally got a comfy chair at work and I’d appreciate if you didn’t steal it).

Step 1: I worked at diabetes camp. I worked for very little pay with crazy, crazy teenagers. I barely slept, I yelled at invisible squirrels with my co-counselors. I gave glucagon to unconscious friends and was the sounding board when someone needed to admit they were struggling with diabulemia. I let the kids dress me up as a goth teenager, I ate many meals without my hands. I checked blood sugars on sleeping 6-year-olds and jumped in a disgusting pond with all of my clothes on. And I loved every second of it. My time at diabetes camp was invaluable both to my personal life and to my overall diabetes education. As a PWD (person with diabetes), I learned more about my own care than I had in the years of living with it, and as a future CDE I learned the biggest lesson of all: no two diabetes are the same, and yet they all have to follow the same rules.

Step 2: My time at diabetes camp then helped me land a job as a triage nurse at an adult endocrinology office. Oddly enough, most of my job was NOT diabetes-related. In fact, I learned more about the other glands in the body than I did about diabetes, at first. What I did learn here – which proved to be more useful than the diabetes stuff, on some levels – was knowledge about Medicare, hypertension, and hyperlipidemia (among other co-morbidities). These are things that we usually don’t think of when we think of diabetes, but they play a bigger role than you’d imagine. Being a CDE means that you have to not only understand what insulin dose to change, how to check a blood sugar, and how to teach someone to use a pump, but you are required to know how all of this will effect the whole person, and the rest of their life. My time in this position taught me just how much I didn’t know about diabetes. I learned what to do for colonoscopy prep, how to manage blood sugars after a G-tube was put in, how to relay orders between a doctor’s office and a nursing home, how to deal with company reps, and how to talk someone through glucagon over the phone. It’s not all test strips and CGMs.

Step 3: I knew people who needed me. A local pediatric clinic needed a person to fill a role as a diabetes educator, and I applied. I had not yet taken the exam, but they were okay with hiring me knowing that I was eligible. (I also knew one of the CDEs already employed there from my camp connections, which I think helped a little.)

Step 4: The exam. Of the 200 questions, 175 of them were graded. Only 26 of this 175 were about disease management. Well, what were the other 149 about you ask? Good question. I had at least four questions about Medicare guidelines (see how my first job really helped here?). Many questions about which lipid lowering medication is indicated, or hypertension drugs I would recommend. Basically, this exam had very little to do with actual diabetes education. Diabetes infiltrates SO much of everyone’s life, and doesn’t end when you leave the doctor’s office. Aren’t you glad to know that CDEs are expected to not only realize that, but be knowledgeable about how diabetes can affect every other part of your health and wallet?

After all of that, I passed the exam (after waiting six very long weeks for my results) and I’m where I want to be. My path was not easy, but definitely not as difficult as it could’ve been. I was able to earn my required hours in a job that taught me a lot about diabetes, a lot about nursing, and was fun (the 8 – 5 work day didn’t hurt either). I was not forced to take the traditional “work on a med/surg floor for three years” route that all of my nursing instructors wanted me to do. I found my own path that made me happy and helped me reach my goal.

There are many positions out there that you can take to learn about diabetes and get in your hours. I know quite a few nurses who are the “go-to diabetes nurse” on their ortho floor, or pediatric floor, or even post-op floors. You don’t have to land a job in an endocrine office. You don’t even need to be a nurse to become a CDE. I would highly suggest getting involved with camps or orgs to boost your resume and skills, and from there do what you can, and learn what you can.  It’s not impossible, I’m living proof!

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Abby is a 20-something living in a much-too-cold state constantly wishing she was on a beach. She has had type 1 diabetes for almost 16 years and is currently updating all of the letterhead in her office to include “CDE” after her name. Her favorite color is purple, she just adopted two very cute little kitten brothers, and she would really appreciate if you could tell her peppers and tomatoes in her garden to ripen up already. If you have any questions about her journey from irresponsible college student to RN, CDE, she is more than willing to chat [Editor's note:  You can leave a comment for her in the comments section].

We Are Not Waiting: CGM in the Cloud (Part 2).

Continuing from last week, I’m picking up this morning with Laurie Schwartz, mom to Adam (T1D) and an active and supportive voice in the CGM in the Cloud group.  In the last week, I’ve had many interactions with people from the CGM in the Cloud group and every single person has been happy to share their experiences, eager to share their expertise, and more than patient with my questions because their goal is to help people.  Laurie is no exception.  Laurie Schwartz is a retired dentist, now residing in Colorado and partnering with her husband in life, love, home-education of three kids, and pursuing a better understanding in diabetes management for her son.  And today, I’m really pleased that she offered to share her experiences with CGM in the Cloud here on SUM.

Kerri: What’s your connection to the diabetes world?

Laurie:  Diabetes has been a very large and recurring theme in my life since 1980.  
I have lived with diabetes from the perspective of a child watching a diabetic parent struggle.  I have experienced the disease as pregnant woman fearing the damage to an unborn child when diagnosed with gestational diabetes. The most emotionally challenging connection is definitely as a parent caring for a child with this disease.  Recently, I have added the view from an early diagnosis for myself as I become more and more glucose intolerant.

My father was a brilliant physician who suffered for decades from the complications of insulin dependent type 2 or he might actually have been misdiagnosed and was LADA.  His struggles with fears of lows as a surgeon, to poor control and long standing hyperglycemia from lack of frequent monitoring, to my witnessing all of the devastating complications he lived with has influenced me heavily in my approach to our son’s current management.

My third and youngest child, Adam was diagnosed in June 2008 with type 1 at the age of five years old.  Our diagnosis story is included in a book “Lifesaving Labradors.”

Kerri:  So how did you find out about the CGM [Continuous Glucose Monitor] in the Cloud group?

Laurie:  In the pursuit to have every tool possible for maintaining “normal blood sugar”,  I found myself embracing the benefits of the diabetic alert dog.  I have been active in the Diabetic Alert Dog community since training our alert dog in 2010. Willow Wonka is our son ‘s alert dog. Willow is a very skilled and polished dog, who has contributed significantly to our ability to maintain Adam’s a1c between 5.4 and 6.0 since June 2011. My use of the alert dog with the CGM has been our focus for better management.

On April 20, 2014, our close friend who heads a wonderful diabetic alert dog organization, Crystal Cockroft of Canine Hope for Diabetics, screenshot and texted me a picture of a Pebble watch with CGM information.   She thought I would like the technology.  I immediately wanted to jump on a plane to San Diego and pay any amount of money to acquire the technology.  I was shaking with excitement over the envisioned benefits the system could offer.  We had to have it!

The picture was posted on her Facebook friend’s page, Jason Adams. 
I contacted Jason minutes later on Facebook and he” heard” my desperation.  He assured me that a plane trip or an expensive fee was not required.   By April 22, just 48 hours later, we had purchased everything and had the system working.   Then, remarkably within just 3 hours, the CGM in the Cloud potentially helped us avert a dangerous medical crisis.

Kerri:  Within three hours?  What do you mean?

Laurie:  My desperation to acquire this technology resulted from a culmination of stress due to five months of bitter fighting with our mail-order pharmacy to stop shipping us 90 day supplies of warm insulin. Just the days earlier, I had finally gained approval from our insurance to receive local retail pharmacy, in the hopes it would be properly stored and handled cold insulin.  My recent success was a result of my efforts the previous week frantically arguing that bad insulin would kill my child because his body and our pump settings were all adjusted to the unknown effectiveness of warm less effective insulin. My claims were my true fears but I didn’t truly understand what that could look like.

We have had our kids in year-round swim team for four years mostly because the exercise is fantastic for blood glucose control.  We have systematically created a process to maintain stable blood sugars during practice with Adam’s consumption of simple glucose drinks.  We check blood glucose midway through practice or more frequently and one parent is always close by.

Our prior success in managing to maintain steady blood glucose even with potentially weak insulin gave us a false sense of security.  In hindsight, it was a recipe for disaster.  We were so comfortable with our carb/exercise protocol that I was even taking the alert dog to classes away from our son during some swim practices.

University of Denver Hilltoppers has 80-100 kids in the pool every evening.  On this night, when we had the Cloud system for the very first time, I was at dog agility class with Willow.   My husband was swimming his own laps in the open adult lane with Adam just 2-3 lanes away.  I watched on the CGM in the Cloud Adam’s CGM readings decreased and then report a 49 mg/dL.  I repeatedly texted my husband, then determined he was probably unreachable by text because he was swimming and for the first time since Adam was on the team, called the pool office and asked that Adam and my husband be removed from the pool to check his blood glucose.  The BG check revealed Adam was 70. For us, a BG of 70 is not necessarily an emergency but Adam had been consuming simple glucose all through the practice and should have been 100-140.   My husband gave him (an unusually large amount for us) 15 g of carbs without additional insulin, waited 15 min. and with Adam’s insistence that he was fine, let him back in the pool.  Adam got out five minutes later reporting feeling extremely low and sick.  His feelings of that symptomatic persistent low did not resolve appropriately as his BG would not increase above 70 mg/dl for about an hour even with additional large amounts of dextrose and interrupted insulin.

We can only attribute this never before seen persistent low to the use of the new effective insulin combined with the effects of heavy exercise on his body’s insulin sensitivity.  The timing of our access to the CGM in the Cloud was so fortunate, and I believe lifesaving.  The realization that we so narrowly escaped a tragic situation motivates me to continue to express my gratitude and assist in other T1 families learning about this amazing system.

Kerri:  That’s some tech validation, right there.  Is this in line with what you see being discussed in the CGM in the Cloud group?

Laurie:  The group was created to share the personal experiences and observed benefits of the system.  Our swim practice incident was just one instance that demonstrated that this technology advance to the CGM system was too important to keep private.

The group discussions are varied from sharing success stories, sharing how distance monitoring allows for parents to coach grandparents and friends while away with a T1 child, to assisting in technology set up questions, and to discussing future development ideas and approaches.

All of the contributions made by the group members assist in the direction of the future advancements to the system.  [Editor's note:  The emphasis added was mine, because her statement is beautifully true.]

Kerri:  How is this group moving current diabetes technology into tomorrow’s tech space?  

Laurie:  This is a technology was created out of necessity by real parents living with the shortcomings of what the industry had to offer.  The ever-growing bank of ideas and knowledge is flourishing with new approaches from all over the world.  This group is collaborating to create software and hardware advancements for T1 monitoring, data transfer, and utilizing this community’s conversation to draw the direction to which the effort should be best focused.

Kerri:  As I had asked John last week, do you fear the FDA?  Or the companies that make the CGMs?  What are your concerns about how Big Companies might view this movement?

Laurie:  I am concerned that greed or other human failings might slow the progress of this technology.  The FDA has its role to review the safety of medical devices.   In this case, the FDA has played its part by testing the inserted sensor materials, the exposure to the transmitter signal and reviewed the data reliability in studies comparing the BG and venous draws to the CGM readings.

In my opinion, the FDA has little place in restricting how the patients use their own medical data.   Once collected, the data is used for improving and intelligently monitoring diabetes management decisions and should not be restricted.  How the data is usefully transmitted is not an FDA matter, it should not be restricted or slowed.

The cloud group is not about redesigning wonderfully effective medical technology, but rather improving user interface. The biggest facet to effective diabetes management is constant awareness of your body and its metabolic status.  Making that information as convenient as glancing at your watch or smart phone is invaluable to the process. Dexcom is a leading company in the CGM industry, approved by the FDA as a medical device company and should focus its efforts on continuing to improve materials for interstitial fluid monitoring of glucose.  How the patient uses or shares the medical data should be a patient decision.  If the open market technology world designs advancements to support the Dexcom technology, the tech advancements can promote the company’s continued success in the industry.  This can be a win-win for Dexcom and the T1 community through the careful construction of continually improving the technology bridge.

Kerri:  Okay, so let’s look at some of the nitty-gritty.  How easy is it for members to get one another suited up and running on a remote device, and how does the CGM in the Cloud community help one another in this process?

Laurie:  Many new members have assisted each other in the set up process.  Jason Adams had contracted a freelance university student, Rajat Gupta to help him set up his own Cloud system.  Without hesitation, Jason shared that with me, a complete stranger, connected by desperation to help one’s child. Jason and Rajat assisted in our set up and many many more set ups since.  Rajat’s system has been very successful and easy to utilize for the non-tech families.  Our setup was literally a 20 minute process once the android, pebble watch, cords and case were purchased. Our heartfelt gratitude goes out Rajat for continuing to support this community with many uncompensated hours.

Jason Adams started the Facebook group to help share the clear benefits that having the Cloud system offered.  Since that beginning where Rajat offered an emailed application, the group has grown and and additional option to acquire the Cloud system has emerged with community support for a “Do-It-Yourself” system.  Regardless, of which way a PWD or CWD acquires the CGM in the Cloud, the system offers unique access to real time distance monitoring of CGM data.

Kerri:  And last, but certainly not least – why is this CGM in the Cloud technology important to you?  

Laurie:  Personally, every single advancement is an opportunity for better control.  I remain tormented by my father’s struggles with diabetes, and I am driven to help my child live better with diabetes.  We have many systems in place to assist us in our management goals.  We strive to maintain non-diabetic glucose ranges to the best of our ability.  The effort it takes to manage tight control is very complex. and requires constant vigilance  We appreciate various devices for their contribution and do not focus on shortcomings. We embrace any and all systems that can help us to make better, faster and smarter management choices.  We pursue the latest most accurate blood glucose meter, the least intrusive pump, the best trained alert dogs, the newest generation and best rated CGM and any extension that can be added to those systems.

The BG meter is a static point in time and as quickly as that reading is offered in a few short minutes a very different glycemic situation could be occurring.  Considering the margin of errors each and every BG reading may reflect, it is almost based upon tradition or superstition to why anyone uses a BG meter for making important decisions regarding the titration of a lethal drug like insulin.

The alert dogs are preemptive tools requiring proximity to the T1.  The DADs (diabetic alert dogs) give a signal that alerts us to impending changes prior to the meter and CGM. The dogs give us a heads up that we need to pay attention.  That heads up is usually significant in shortening the amount of time or our son is out of range with a high or low event.   The biggest drawbacks to their service is the necessity of proximity (limits set by distance scent can travel) and the handler’s ability to interpret and utilize the advanced warning alert.  By proper interpretation of the dogs alerts extremes glycemic events can be minimized and ranges tightened.

The CGM shows trends and data.  Reviewing data gives valuable information for discrete dosing adjustments to basal rates and bolus ratios in the short and long term.  There is overlap with the CGM high and low alarm alerts with the dog’s alerts to some extent, but not quite.   The diabetic alert dog’s alerts are usually ahead of the meter, CGM and symptoms and the CGM historically lags the event.  Similar to the dog’s scent ability, the CGM is also restricted by proximity through the limits of range of signal from the sensor’s transmitter to the receiver.
 
What the CGM in the Cloud uniquely brings to our arsenal of management tools is real time distance monitoring.  No other tool allows for the person with diabetes to have the assistance of a person at distance contribute to the management in real time.  The distance component is lacking in the current management tools.  By having the Cloud broadcasting a constant flow of information that can be accessed by interested parties, those parties can assist in collaboration for better treatment decisions, faster or slower or more discrete interventions.

From a social and emotional perspective, the Cloud system also offers a more discrete monitoring contribution.  With this technology, we can assist our child in treatment decisions in a more timely fashion but also with less unnecessary intrusions to the parent-child relationship.  We can lessen our queries for CGM readings or BG results and more unobtrusively suggest a timely intervention of a BG check, suggest a small carb snack or insulin dose.

 By utilizing the Cloud, some of the relationship interruptions caused by diabetes are minimized.

With more intelligent distance monitoring by parents; the teachers, babysitters, grandparents and parents at play dates have support staff, experienced diabetic managers on their team to help the T1 child safely stay closer to normal ranges.

For a parent to develop strategies to promote safe independence, safety need not be compromised.  Traditionally, parents gave their children carbs before bed.  The bedtime snack was to help prevent a low during the late hours.  That same snack probably caused a high but without testing or monitoring the highs were not confirmed and the child was hopefully expected to survive the night without a deadly low.  Sleepovers and bedroom assignments were dictated by proximity to parents’ bedroom because that was needed for monitoring.

Sending a child to participate in a sporting event or physical activity usually involved increasing the blood glucose, so there was a margin of error for the exercise induced energy drain.  With the CGM in the Cloud, more timely monitoring can provide the opportunity for the parents to avoid unnecessary highs as a prevention technique for lows.

The real story is in those who created this technology. The determination and drive of these parents with T1 children to work tirelessly to create a system that overcomes the limitations of current medical technology is so impressive.  The value in this system is that it was forged out of necessity.  These parents had a vision and they created and labored to succeed. 

Their decision to their solution with complete strangers speaks to their integrity and generosity.  Our interest, gratitude and support should be focused on their efforts and selfless contribution.  These individuals have careers, families, sleep-deprivation from living with children with T1 and they are not looking for the fast buck or to “cash in.”   Subsequently, others will come looking to help and develop this process. There will undoubtedly be some looking to make a quick buck,  but the developers released their work to open source for the good of the T1 community.  Regardless of who continues to develop this system, my hope is that the diabetic community will be improved as this much-needed technology continues to develop.  I offer my information as an end user of the CGM in the Cloud and my enthusiastic support of the system for its life saving and life improving capabilities.

Thank you so much, Laurie, for sharing your story.  To find out more about CGM in the Cloud, you can visit the Facebook group (up to 2,779 members now) and connect with folks who share your desire to have the data where, when, and how you want access to it.  And later this week, I’ll show you the system they helped me build and why it matters to me, as an adult with diabetes.

We Are Not Waiting: CGM in the Cloud (Part 1).

Waiting, when it comes to diabetes, frustrates the hell out of me.  According to the “cure in five years!” mantra that rang out constantly when I was diagnosed in 1986, I’ve been waiting for a cure for almost 30 years.  Currently, I wait (impatiently) for the Animas Vibe to become available to US patients.  I wait for the Dexcom Share application to become available.  I wait for doctors to call me in for appointments and on the phone with mail order pharmacies and on and on … lots of waiting.

I hate waiting.

But people aren’t waiting anymore.  There’s a whole movement in the diabetes community embracing that very concept.  And today (and tomorrow) I’ll be taking an in-depth look at how amazing people in this community are taking their diabetes data into their own hands.  We are not waiting, indeed!

Today, John Costik, one of the founding members of the CGM in the Cloud Facebook group, an engineer, and diabetes dad to Evan, talks with me about the #wearenotwaiting movement and how he was inspired to make CGM data bend to his needs.  (This is a long post, but his perspectives are awesome.)

Kerri:  What is your connection to diabetes?  And can you tell me about the CGM in the Cloud group, with some background on the We Are Not Waiting movement?

John Costik:  When Evan was diagnosed, it felt like the floor to the lives we knew had vanished. The grief, anxiety and denial were all very real, and once we had our hospital training and sent on our way, the reality of it all sank in. Type one management is hard! But my wife, Laura and I are both engineers; we saw, almost immediately, that processes can be improved, data can be collected and analyzed. If we could make life (even just a little) more like life without T1D, we had to try. After researching pumps and CGMs around Christmas of that year, we decided we wanted to start on the [Dexcom] G4 as soon as possible. The DOC was very helpful – your first and second impressions posts, along with other reviews, made it pretty clear that this was an amazing device.

We danced with the insurance company, fortunately not for too long, and we had Evan’s CGM in hand in late February of 2013. I decided to start tweeting about it – it was a very real shift to a more optimistic attitude in all of us.

I was hooked, and the anxious father in me never wanted those numbers and trends to be more than a glance a way. Less than a week after getting the G4, using files provided with Dexcom Studio (libraries), we had a windows laptop pulling the data and sending to a simple Google doc for Laura and me to pull up throughout the day. I built a simple trend and number app for our iPhones that pulled this data – sitting in a dock at work, Evan’s BGs were a glance away.

I also wanted to cover the “gaps” in data – recess, walks around the ponds at daycare; arguably the riskiest times for a low to creep up on Evan. I then began to look into using a cellphone to read the G4, and send the data to a cloud service that any number of devices could pull from. I took family medical leave starting in April 2013: Evan’s honeymoon was ending, pump therapy was beginning, and Kindergarten prep wasn’t going to be as simple as we’d expected (plus, Laura and I were exhausted). I set aside a few weeks in May to see if I could make the cellphone chat with the G4. Fortunately, I didn’t let my technical shortcomings keep me from trying, and I figured it out pretty quickly. An Android app that can read G4 data became a thing!

This led up to an email from the wonderful Lane Desborough. We got talking, I shared my simple Windows uploader with him, and he began working on “Nightscout” – a glance-able BG chart that could be viewed throughout a home. After several months of testing, improving the Android app to work more reliably, I shared the code – Lane continued to develop Nightscout, with assistance from Ross Naylor – I leveraged the chart code in our own “Care Portal” and grabbed a Pebble watch to play with.

We continued to work on our apps and tools, more folks on twitter began to notice – and it became very clear that people really wanted this tool. It was life changing for us, and other parent’s immediately saw the value, the hope for a less complex, safer, healthier life it can bring. Freedom!

The “CGM in the Cloud” facebook group started from these early twitter interactions and helping just a few other d-parents looking for a better way. We have wonderful tools, but they can do more! Jason Calabrese, Jason Adams, and Toby Canning deserve the credit for scaling this system.

Jason Adams started the group, because he knew that we were not the only ones tired of waiting.

A simple tweet that started something bigger:

#wearenotwaiting was coined by Howard Look, d-parent and CEO of non-profit start-up Tidepool. It was the call to arms for the first “d-data exchange” hosted by Tidepool and DiabetesMine, just prior to their Innovation Summit in November 2013.

As a movement, it is all about doing more & not waiting for:

  • Anyone else to step up and change the standard of diabetes care.
  • To cut through the old proprietary systems of big medical.
  • To take ownership of our data.
  • To use the combined data (BGs, Nutrition, Insulin, and Biometrics) to unravel the unique mystery that
  • everyone’s T1d is.
  • To go out on a date with a spouse, without T1d’s shadow tagging along.
  • So many things!!

Kerri: What kinds of discussions have you seen taking place in the group?

JC:  Wonderful Testimonials! I can’t express how amazing it is to see so many people “taking back” from T1D.  Parents out on dates, children riding bikes, going on sleepovers – these events were either put off or filled with anxiety and fear over the constant “???” Removing the mystery makes it possible. It makes averting dangerous lows possible… To see others experience what we experienced, it is still overwhelming.

HELP! And lots of it freely given… New folks learn, and teach others, the combined learning of hundreds, now (potentially) 1,500+ people. How do you pack this setup together? How does your child carry it?  What phone works best? What cables do I need? How do I compile the code? I see the full spectrum of technical prowess in the group members, but no one should ever (and I hope hasn’t) feel that there are any questions off limits. I know, as I’m typing this, that there are at least 20 conversations going on covering how to install the pebble watch to the best Nintendo 3DS case to stuff this setup into.  The future! Don’t like ???’s We can see through them – Want less lag in your CGM data? That’s coming.

The discussions in the group also point out the very real shortcomings of a DIY system – all of a sudden, instead of just worrying about a sensor problem or being out of range – you have cell service drops, weak wifi, bad cables, phone battery life, all these new points of failure… but we work through them, because not one or all of those new concerns can topple the improvement in life the “CGM in the Cloud” brings.

Kerri:  How is this group moving current diabetes technology into tomorrow’s tech space?

JC:  CGM in the Cloud gives us a look at the future of connected devices – a space that consumer products are starting to fill, but medical devices lag. It’s understandable: regulatory delays, walled-off device ecosystems that, by design, keep you tied to a single device maker, and device hardware focus (not the integration or software) induce this lag (among many other things). CGM in the Cloud bridges this gulf in time – simply knowing how to “talk” to a device and get the same data we see on a receiver screen, that’s all we need to get started. The remaining technology is there to be bolted on and consume the available data, to display it in such a way that unobtrusively integrates it back into our lives. What works for me may not work for someone else, but that’s fine – there’s no limit to what or how we use or access the data.

Light bulbs that can turn themselves on, change color, audio systems that can wake up the neighborhood, an app that can call someone when conditions merit. Standards, and organizations like Tidepool will make this fly – I would much rather read a standards document than decode byte arrays. I would love a single platform or application that lets me talk to all of my medical devices – not three separate and poorly designed apps that I hate so much I never use anyway…

Publishing protocols and using standards will benefit device makers – I wonder how many new G4 Platinum systems have been sold because CGM in the Cloud exists? I know people that were on the fence between Enlite & G4 – and CGM in the Cloud was the deciding factor (I know people that have switched out right – Insulin suspend or Remote monitoring … remote monitoring was a bigger benefit to them)

Kerri:  Is this group only for Dexcom G4 users? Or is someone dabbling in Medtronic/Abbot space?

JC:  I “hacked” the G4 because it is the best CGM product for us, available to us – d-parents, PWDs – anyone that uses a medical device to keep them alive & well should be able to use device that suits them best. The company name on the device should be irrelevant – I have zero brand loyalty when it comes to CGM, BGM, and pumps – I will use the best product available, and that’s it.

If the Enlite is the best product for someone, and they want to use the CGM in the Cloud tools, they can – we just need to know how to get the data from a 530g to the cloud, preferably wirelessly, and the rest is ready to go. I actually think Medtronic would be doing themselves a favor by letting us know how to read the data in this way. As I mentioned, I know people that have switched or picked the G4 because they can see the data virtually anywhere in the world.

I hope these companies understand that something as “simple” as internet accessible, real-time CGM data makes a big difference for a lot of people.

Kerri: Do you fear the FDA? The CGM companies? Anything? (Or is part of the movement to also #techwithoutfear?)

JC:  I don’t fear the FDA or CGM companies … anymore. My biggest concern, and why it took nearly a year to make the code open source & available on github, is the fear of litigation from individuals. Covering those bases was extremely important. Doing all this work to make our (my family) lives better, only to risk financial ruin would’ve been, well, awful. Licensing, disclaimers, LLC’s – they can cover you pretty well, but it’s the larger CGM in the Cloud community that offers the most help. The programs that CGM in the Clouds use are part of an open source repository owned, not by me or anyone else, but to the group – it’s open to any and all contributors. Ben West has taken on curating the group code, and that code is as much yours as it is mine.

The FDA is coming around – the group will “pre-submit” to the FDA at some point, and if their new guidance is any indication, we could eventually see a “CGM Uploader” app in the “Google Play” store.

In fact, I have several apps and tools that remain private, and these regulatory changes would make sharing them a no-brainer.

Dexcom has been largely silent, but always aware of what we’re up to – I see very little reason to be afraid of them. Every interaction with them has been great. I hope they like what they see!

Kerri: I’ve downloaded the “CGM in the Cloud” high level set up. How easy is it for members to get one another suited up and running on a remote device?

Photo credit to the CGM in the Cloud Facebook grouplarger image here.

JC:  Pretty easy! From phone advice to actual setup help (Rajat Gupta is amazing, I think he’s helped over 60-70 people get it set up), it’s all there, and Facebook group posting style can make it challenging to find an answer – so a new post is always okay.

Laurie Schwartz, Jason Adams, and Jason Calabrese are the group admins, and they’ve done a great job guiding users and staying very current on the posts with their very sage advice. As much as any of us that wrote the original code may have done, they’re the ones that carry it up and on to a level I never would have thought possible. [Editor's note:  Look for more from Laurie tomorrow!]

Kerri:  John, why is this tech important to you?

JC:  It makes life better, it gave Evan a school year with but a single BG below 60. It gives Evan non-diabetic A1c’s – with pizza and cake still on the menu! And hypo and hyper a mere 1% for over a year. (Caveat: Evan eats anything and everything, which allows very good timing and 100% pre-bolus capabilities – solving for specific foods by collecting the data, analyzing and improving the bolus strategies)

It lets Laura and I go on dates, and actually pay attention to something other than diabetes!  Evan and Sarah can play for hours outside, without mommy and daddy hovering or interrupting constantly.  As I’ve said before, it takes back some of what type 1 took from us that day in August.

Technology is only as good as the good it does for people. If it doesn’t make life better, easier – skip it,find something that does. For us, and our use, it goes beyond merely seeing BGs all the time. The increased awareness, even at its most passive, helps us understand diabetes a little better, and it gives a CWD or PWD a team of people that understand it as well. Our school nurse is amazing, and she used a custom site (which will end up in the open source repositories this summer) to view his BGs, log treatments, and view those treatments on the same Chart. Her own intuition about Evan’s diabetes was key to a virtually hypo-free year.

I hope the shared awareness continues to lighten the burden for Evan, and helps prevent burnout as the tasks ramp up. I told him, if we haven’t cured it, I will always be happy to mind his diabetes if he needs a break from it – whether 13 or 53. Technology like this enables me to do just that, without actually impeding or limiting Evan’s ability to enjoy life.

Kerri:  And lastly, how can the greater DOC support this movement?

JC:  Share use cases – how would you make it better, how could it make your life better? YMDV, and no system will meet all needs all the time, but we can try – the beauty of a crowd-sourced tools like this -someone else probably wants what you want, and if you’re alone, there’s still someone more than willing to help make it happen for you.

The DOC can spread the word, and help build the community. Together we can show the device makers what products we really want – if a group of 1,500 can get some attention – the stronger our voice, the better. It’s hard to find better motivated people than the DOC – what we do to keep ourselves, a child, a spouse, a friend, (and so on) happy and healthy comes from a place of great love. I suspect our best ideas, our biggest innovations come from the heart, and not a desire to make money.

Thank you, John, and to learn more about CGM in the Cloud, visit the Facebook group. 1909 members … and counting. More about this group from group admin and D-Mom Laurie Schwartz tomorrow!

Guest Post: It’s All Happening.

Most of the time, I make sure I know two phrases whenever I’m traveling abroad – “I have type 1 diabetes,” and “Where is the bathroom?” – because … because.  Diabetes might require more planning ahead when it comes to travel, but it can be done, and Sarah from Coffee & Insulin is proving that with every stamp in her passport.  Thanks for guest posting about diabetes and international travel today, Sarah!

*   *   *

Leaving for my 10-month study abroad trip in Europe, I lugged my carry-on through the airport, stuffed to the gills with test strips, insulin, pen needles, syringes, glucose tablets, batteries, glucagon, and an extra glucose meter. I handed the flight attendant my one-way ticket to Marseille, France and boarded the plane, cradling a year’s worth of diabetes supplies in my arms.

The day before, I’d put 3 small slips of paper in my wallet. They read J’ai le diabète, Tengo diabetes, and Ich habe Diabetes. “I have diabetes” in French, Spanish, and German. (I actually have diabetes in every language, but my wallet is only so big, you know?) I had copies of every prescription folded in my bag. I had travel notes from my endocrinologist. At 21 years old, this would be my third time traveling to Europe. I was beginning to get the hang of the whole “international travel with diabetes” thing, which is certainly an adventure of its own.

I made it to France without a hitch, but my travels abroad didn’t stop there. Over the course of the next 10 months, I visited 11 countries. I went by train, plane, bus, bike, and foot. With each trip, I became a stronger traveler. I became more knowledgeable and more confident. My packing list was an art form. I kept a smaller, pre-packed bag of all the diabetes supplies I would need for a trip, so I could just grab it and stuff it into my backpack. I learned how my blood sugars reacted to hiking hills and winding through narrow cobblestone streets for hours. I learned how much I needed to bolus for a French pain au chocolat… but more importantly, I learned how incredibly delicious a freshly baked French pain au chocolat tastes. I learned and learned and learned about the workings of the world and the workings of myself simultaneously.

While in the Netherlands for a few days, I met a fellow type 1. We were staying at the same hostel, and after spotting her insulin pump, I introduced myself.

Her name was Anna, and she was an American backpacking through Europe for a few weeks with three friends. We became instant friends because of that great, invisible diabetic bond, and we swapped stories on the role diabetes plays in our travels.

Smiling, we acknowledged that any concern, fear, and doubt didn’t manage to stop either of us. Now being on the other side of the pond, being the travelers, knowing the risks and rewards, we thought, how could it?

Just as we made room for diabetes in our daily lives, we made room for diabetes in our travels and more literally, in our suitcases. Once, I wore the same pair of pants for a week so I could fit another jar of glucose tablets and my extra glucose meter into my backpack. And you know what? It was great. Who needs two pairs of pants when you’re busy paddle boating in Prague with an eased mind, knowing you have all the supplies you need?

We laughed (as that is all we can really do) at the awkward moments: when the language barrier was too strong to explain why I had a syringe in my pocket, or trying to find the translation for the word carbohydrates on foreign food packaging. (FYI: In Greek, it is υδατάνθρακες. You can remember that, right?)

We agreed that we’d both hit some bumps in the road. Traveling can be rough. It can be unpredictable. Even if we show up at the airport 3 hours early, the plane might be delayed. Even if we write clearly and legibly and have all the necessary tags on our luggage, it might get lost. And as we know, diabetes can also be unpredictable. Even if we count every carb, bolus precisely, go to the endocrinologist every three months, check our blood sugar 18 times a day- high blood sugar will happen. Low blood sugar will happen. And beautiful, rainbow skied 100mg/dl will happen. It’s all happening.


It’s super cheesy and super true to say that bumps in the road are part of the best adventures, and as long as we are aware and prepared for our needs as diabetics, everything will be okay. I’m not saying everything will be seamless. Our luggage might still get lost (which is why I never put diabetes supplies/medicine in a checked bag!) and our blood sugar might go high because of French baguettes and Italian pizza, but when it boils down to it, we’re stronger than the ups and downs and highs and lows. We’re brave and cool and we’re not going to let diabetes-related fear limit our adventures.

We’ve totally got this.

“If anyone can handle a bump in the road,” Anna laughed when I showed her my backpack full of glucose tablets, “it’s definitely us.”

*    *   *

Sarah is a recent college graduate, writer and literature nerd, expert coffee drinker, and type 1 diabetic of 9 years. She currently lives in Virginia, but is moving to Europe in the fall! New to the diabetes online community (and amazed by its support and kindness), she hopes to become further involved and continue to connect with other inspiring individuals living with diabetes.  You can read more of her adventures with type one diabetes and world travel on her blog, Coffee & Insulin.

Guest Post: Adventure D!!

Hi!  I’m on the road again this week (ADA and a quick visit to Canada and then down to Texas … hence the digital tumbleweeds here), but thankfully, a good friend from across the pond has stepped in to say hello and share a little bit about why she’s created a really col project called Adventure D.  Please welcome the lovely Anna Presswell and check out her story.

*   *   *

“Rare.”

Not a word you might expect to hear all that often from the lips of a child.  But one I was using routinely by the time I was knocking on the door of my teens when describing my life with type 1 diabetes. “Not many kids have it,” I would say, excusing people of their lack of knowledge; softening their embarrassment as the quizzical looks on their faces gave them away.  Reflecting back, I suppose I was also describing the number of occasions I had connected with another person with diabetes. Diagnosed at four years old, I’d lived half of my life with diabetes by the time I met another person my age with type one, and it was utterly implausible that we be allowed to speak to one another – what with him being a boy, and everything.

It was two decades later, now cocooned by the warmth, support, and sense of belonging that I had discovered in the DOC, and with at least 200 go-to friends with diabetes in common, that I realised how isolating diabetes could be. I guess it’s true what they say:  sometimes you just don’t know what you’re missing.  It was around the same time that I first made the commitment that whatever I did with my life it would involve getting shoulder-to-shoulder with other people affected by diabetes, so that I never had to use the word ‘rare’ again.

We’re not rare.  We’re incredible. We just aren’t always connected.

So when my brother, Chris, a seasoned kayak and sailing instructor, told me that he’d been thinking about a project to bring people with diabetes together, I was all ears.  Chris had been told some years before that people with diabetes would struggle to take on some of the adventurous mountain hikes he so loved, because of the drastic effect it would have on blood sugars.  Well, for Chris that explanation just wasn’t good enough. To sit it out: because of diabetes?  No.  That simply won’t do.  So we sat.   And we planned.  And we hatched.  We moulded thoughts and bent ideas as to how we could create something for people affected by diabetes, by people affected by diabetes.  And with a touch of time, a dash of courage and a pinch of determination, Adventure D was born!

Adventure D aims to bring people affected by diabetes together for the purpose of peer-to-peer support, education, and to enjoy adventure activities in an environment mindful of the challenges that diabetes can pose.  And because my family were raised with diabetes being something the whole family helped each other to take on, Adventure D also includes family members and loved ones – people who also live diabetes day-in, day-out – at our events.  So have you ever wanted to try ocean kayaking?  Do you want to feel the elation of standing on your first wave?  Or feel the excited chill of the ski-slope air on your face? Then check out our website and come and join us for our first event, a ‘Get Kayaking’ weekend in Chichester Harbour, West Sussex, England.  The weekend will have you learning everything from basic skills to advanced techniques, and playing (um, winning!) water-based games.  All equipment and tuition are included, as well as all carb-counted meals which are prepared by the on-site catering team.  And the accommodation? Well, what was once a military vessel has now been converted to a high-spec floating conference centre with 180 degree views of the harbour.  Sound good?  We think so, too.

Just take a look at the photos!

So come and join us, get connected, meet other people with diabetes, and let your adventurous side out!

You can find us on our website, on Facebook, or on Twitter or look out for updates on my blog, which led me to the DOC.

*   *   *

A little bio action from Anna:  “My name is Anna and I am many things: I am a wife, a daughter, a sister and a friend. I’m a wannabe surfer, an animal lover and an amateur photographer whose very best work is only slightly North of mediocre. I love the outdoors, naps and chocolate of any kind.  I am also a Type 1 diabetic (insulin dependent, juvenile onset, the beast has many names).  Diagnosed in Germany at four years old, it was only as I turned 27 and started blogging at Insulin Independent, that I discovered the advancing powerhouse that was the diabetes online community.  Now, living in Hampshire, England, I have the honour of having met and become friends with countless people affected diabetes, thanks to that come-as-you-are community spirit.”

Guest Post: The One Diabetes Rule I Always Follow.

Thanks to the magic of the Internet and how words can travel from CA to RI by email faster than a sneeze, I’m happy to be hosting a guest post from friend and fellow PWD, Christopher Angell.  (You may remember him from such glucose tabs as GlucoLift and such guest posts as the one about decAY1c.)  Today, he’s writing about the diabetes rules he’s willing to bend and the one he always follows. 

*   *   *

When I was first diagnosed and started my testing and insulin regimen, I did everything by the book. I disinfected test and injection sites with alcohol swabs (no longer recommended). I used a fresh lancet for every finger stick, and I always removed and properly disposed of my pen needles after each injection. I was a model patient (except on those nights when I washed down a giant bowl of popcorn and a chocolate bar with a bottle or so of pinot noir…).

Over time, however, my diligence started to show some cracks. After one too many meals out where I fished out my Humalog pen only to realize I was out of needles, I started leaving my last used needle on, and only changing it right before my next injection, so that worst case, I wouldn’t have to skip dinner or run home and force everyone else to wait while I retrieved my supplies. After using that “emergency needle” one or two times with no adverse effect, I got more and more lenient, until I was only changing a needle when it started to hurt (or required noticeably more force to do its job). Then of course I figured that if needles could be treated like that, lancets certainly could too- they were far less delicate to begin with, since they weren’t hollow.

When I started on a Dexcom CGM, it didn’t take me long to realize that those expensive sensors could have their lives prolonged without consequence as well, and I was regularly getting more than 14 days out them (I still do). Unlike reusing the relatively cheap lancets and needles, that had a real financial advantage. I also quickly learned that I could save my skin some wear and tear by using sites other than the FDA-approved abdomen. In fact, now I can’t remember the last time I wore a sensor there.

Even insulin, I discovered, was often (though not always) good well after its expiration date, or its 30-day window after opening, and subjecting it to a life outside the fridge was usually surprisingly benign.

Now that I’m on a pump, I generally change my cartridge and tubing every 6 days. I still take Lantus as well, and use one needle for the life of each pen, and I’m confident that I will never have to buy another lancet as long as I live (even if I were to live for 1000 years). So to say that I play fast and loose with the usage guidelines of my diabetes devices is to put it mildly. I don’t do it to be stubborn, and generally speaking I don’t do it to save money (though that’s a welcome result). I do it because every second not buying, storing, or changing a lancet, needle, sensor, or pump cartridge is a second that diabetes hasn’t stolen from me, a second that can be spent sleeping, talking, eating, ANYTHING but diabetes-ing. And if I’ve learned anything from living with a chronic disease, it’s that ultimately there are no small things – over time they all add up. Those seconds becomes hours and days over a lifetime with diabetes, so they’re precious to me, and I will only surrender them to diabetes if I truly believe I’m getting something better in return.

Which brings me to the one rule I DO always follow: I never leave an infusion set in longer than three days. Why? Limited real estate. I already know that prolonged injection/infusion of insulin changes my body, and I can tell the difference between a site that has been in one or two days and one that has been in three. I know that over time, the ability for certain locations to absorb insulin can be compromised, and I know I only have so many locations. I also believe that the next substantial improvement in my treatment will be some version of a dual hormone closed-loop pump (quite possibly Ed Damiano and Steven Russell’s Bionic Pancreas). This means I will need twice as much serviceable tissue to enjoy the full benefit of that treatment. So I’m doing my best to preserve what I have. Spending that time now correlate to very real potential benefits  in the future.

In the meantime, I’ve found other uses for my lancets.

Think Like a Pancreas: The Blog.

I’ve known Gary for several years, and most of my interactions with him have been silly (confessing that my daughter busts out dance moves to the Philadelphia 76er’s theme song), so I leaned on his website to pull a formal bio description.  “An award-winning Certified Diabetes Educator, Masters-level Exercise Physiologist and person with type-1 diabetes since 1985, Gary Scheiner has dedicated his professional life to improving the lives of people with insulin-dependent diabetes. He was recently named 2014 Diabetes Educator of the year by the American Association of Diabetes Educators.”

Pretty awesome.  And now Gary is bringing his personal experience as a PWD and professional expertise as a CDE into the blogging space, with the Think Like a Pancreas blog.  I wanted to catch up with him about the how, and the why, of making the decision to join the online conversation:

Kerri:  For the few who don’t know your story, what’s your connection to diabetes?

Gary:  I was diagnosed with type-1 diabetes back in the summer of 1985 in a town just outside of Houston, Texas named “Sugarland”.  A coincidence?  I don’t think so.

Kerri:  Makes for a good story, though.  When did you start becoming aware of/involved in the DOC?  What sites were you frequenting back in the day?

Gary:  I was first “introduced” to the DOC by Allison Nimlos (nee Blass) (love that word, nee.  reminds me of the Knights of the Black Forest in Monty Python and the Holy Grail).  I’ve also been friends with Scott Johnson for many years, and anyone who knows Scott has to become connected with diabetes social media.  The first sites I can recall visiting were David Mendosa’s Living With Diabetes, Kelly Close’s diaTribe, Amy Tenderich’s Diabetes Mine, and the Children With Diabetes site (since I’m on their faculty).

Kerri:  So what made you decide to take the leap into social media?  

Gary:  Our national/international clientele are increasingly active on the web.  It seems like the best way to communicate.  Our practice has been publishing a newsletter for nearly 20 years.  It started out as a printed publication called “Control Solutions” which then morphed into an e-publication called “Diabetes Bites”.  However, putting them together was quite labor intensive.  Blogging allows me and all of our Integrated Diabetes Services clinicians to get the word out in a timely and simple manner (better known as “fast” and “cheap”).

Kerri:  What’s weirder:  Blogging or Twitter?

Gary:  It’s hard to get really weird in less than 140 characters.  But both have their place:  Twitter is great for sharing minor snippets of news and experiences.  Like today, I couldn’t believe that TSA at Seattle’s airport was merging people in the pre-check line with people who had no background checks whatsoever, and sending them all through the same minimal security process.  Talk about a major flight risk!  It also makes the pre-screen process a complete waste of time.  Anyway, I was able to share that on twitter – gave me a chance to vent and perhaps raise the ire of people who can do something about it.

Blogging allows us to delve more deeply into items of interest to the diabetes community.  We can offer up a mix of key facts, experiences and personal opinions in a concise and lighthearted way.  My “Sensor vs. Sensor” blog comparing the various CGM systems, for example, has become been a topic of online and live conversation worldwide since it came out last month.

Kerri:  In your blog announcement, you said you wanted to “keep it fresh, informative and unbiased, yet opinionated and entertaining.”  In a pleasantly-saturated market, how do you plan to do that with your site?    

Gary:  You have to remember, our blog team is very unique.  The information is coming from recognized experts – nurses, dietitians, exercise physiologists and mental health professionals who are certified diabetes educators.  There aren’t many bloggers with those kinds of credentials.  All of our clinicians have type 1 diabetes themselves and extensive personal and professional experience with virtually every diabetes medication, product, and form of technology on the market.  And we are not formally affiliated with any pharma company or device manufacturer.  That allows us to KEEP IT REAL and remain UNBIASED and CREDIBLE.  You won’t find that in too many places.

Kerri:  So what are your social media goals?  Looking to change the web? The WORLD?

Gary:  Just want to entertain and inform our little corner of the diabetes world.  Our focus is truly on the type 1 diabetes community, as well as type 2s on intensive insulin therapy who take their diabetes every bit as seriously as those with type 1.  I’ll be very happy if each post can make one person smile, learn something they can apply, or just nod and say “Hey! Now I get it!”

Kerri:  And how can people connect with you? 

Gary:  First off, I have to make a living.  That comes from helping clients meet their diabetes management goals.  Our practice offers individual consulting services all over the world via phone and the internet.  Details are at our website, or people can call our office for more info:  toll-free in North America. 877-735-3648.  Outside North America +1 (610) 642-6055.

We also offer webinars on advanced topics in diabetes self-management at Type 1 University.

Our blog is called “Thinking Like A Pancreas, “named after my favorite diabetes book  – guy who wrote that must be some kind of genius) [Editor's note:  Clever, Gary.  Clever.]  , and it is located right on our website.

Our twitter handle is @Integ_Diabetes

Our facebook page is simply Integrated Diabetes Services

Kerri:  Anything else you’d like to add?

Gary:  When I’m in need of a good laugh, if The Simpsons aren’t on, I can always turn to the Kelly & Kerri shows (@diabetesalish and @sixuntilme).

Kerri:  Thanks, Gary!  Welcome to the blogosphere, and I’m looking forward to seeing how many Simpsons references you can cram into one post.  And if you have trouble adding links to your blog posts, don’t blame me:  I voted for Kodos.

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