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Posts from the ‘Diabetes Community’ Category

Snapshots: Fell Off.

Until next time.

Miss Idaho: #ShowMeYourPump!

Have you heard?  Sierra Sandison just earned the crown as Miss Idaho, and she accomplished her goal with an insulin pump clipped to her hip.  Yes, that’s right – another Miss America contender has hit the stage with diabetes front-and-center.  And since winning Miss Idaho barely a week ago, Sierra has already brought type 1 diabetes to the national stage via stories on NPR, People Magazine, Buzzfeed and a host of other media outlets.

Diagnosed with type 1 diabetes just after she turned 18, Sierra is helping empower people with diabetes to wear their devices proudly with the #showmeyourpump hashtag as her rallying cry.  Today, Sierra is sharing some some of her diabetes story here on SUM.

Kerri:  Sierra, you were just crowned Miss Idaho and are off to compete for the Miss America crown this September.  Congratulations!  And you’re also living with type 1 diabetes!  Can you share a little bit about your diagnosis story?

Sierra:  My dad is a family practice physician, but I was diagnosed shortly after my 18th birthday and had recently moved out of my parents’ house, so we didn’t catch it as quickly as we could have if my dad had been able to see the symptoms. Fortunately, I was never hospitalized!

I was extremely thirsty and hungry! It finally got to a point where it was ridiculously inconvenient. One day, I was snowboarding, and had to buy water bottles every time I got done with a run. I would drink them on the way up the chairlift, and then have to “relieve” myself at the top, and then again when I got to the bottom. Then, the cycle would repeat. On the chairlift, I called my dad and said, “Dad, I have a problem. I am an aquaholic. Can I go to rehab for a water addiction?” He immediately knew what the real problem was, since my late uncle and grandpa had diabetes, and my second cousin does as well.

However, when it was confirmed, and 550 [mg/dL] popped up on the glucometer, I bawled and bawled and bawled. A diabetes educator came and spoke to my class the next day, because I was terrified that they would make comments along the lines of “it’s your fault”, “maybe if you ate healthier…”, etc.

Kerri:  I saw on your Facebook profile that you were proudly rocking your t:slim insulin pump onstage at Miss Idaho – were you nervous about showing the judges your diabetes device?  What made you decide to go for it and share openly?

Sierra:  I’m going to be completely honest, it still scares me sometimes to wear my insulin pump. Getting the confidence to wear it on stage has been a journey.

When I was first diagnosed, I hated diabetes so much. I just tried to ignore it, and let my blood sugar be high until I felt to sick to deal with it. It was awful. In July, my friend asked me to compete in our local pageant, Miss Magic Valley. I met the director for lunch, who told me everything that was involved. When our food arrived, I pulled out my insulin pen, and she immediately told me about Nicole Johnson, Miss America 1999.

Nicole wore her insulin pump on the Miss America stage while she competed for her title. Knowing that has had such a huge impact on my confidence. As a young woman, we often long to look like the girls in the media: movie stars, super models, cover girls, etc. The media gives us unrealistic expectations, and most of us will never measure up. We soon begin to think that, because we are different from those girls we see, that we are somehow worth less, or less beautiful than them.

What a disgusting lie! Unfortunately, I don’t think we can ever completely escape the influence the media has on us. I hope that someday the media can be filled with a variety of beauty! That is one of the reasons I love the Miss America Organization:  Nicole Johnson rocking her insulin pump in 1999; Alexis Wineman, the first woman with autism to compete at Miss America, in 2012; Heather Whitestone, the first deaf Miss America in 1995; Nicole Kelley, Miss Iowa 2013, was born with one arm.  And countless more women who have inspired the country while competing at Miss America!

So, eventually, after thinking about, researching, and following Nicole Johnson, I got the guts to get a pump. However, it took me another year to compete with it.

This year at Miss Idaho, I was honestly terrified. I was nervous the judges wouldn’t ask me about it in my interview. I was nervous that the audience would be confused. I was scared the other contestants would think I was using it to try and get pity from the judges.

I walked into my interview, and the very first question was about diabetes. It was a huge relief. “I can do this,” I thought, until I walked out of the dressing room, and was immediately asked about the pump.  The person who asked me was Miss Idaho’s Outstanding Preteen, McCall Salinas. While my heart sunk when she first pointed it out, that quickly changed when she explained she was a diabetic, but was too scared to get a pump because of what people would think.

That was it. I was doing it. I was going to wear the pump for McCall, no matter what people said or thought, and no matter how badly it may affect my score. I walked on stage, and the rest is history.

Kerri:  Since the competition, you’ve also encouraged others to wear their devices proudly, with the #showmeyourpump hashtag/mantra.  What’s the response been like?

Sierra:  It has been so overwhelmingly AMAZING! You have to understand, I am a completely normal person. My sisters and I are getting embarrassingly excited about all my new followers and likes. It is so crazy how many people were so inspired by me doing such a simple thing! I was prepared for a lot of negative backlash for competing in a beauty pageant with a swimsuit competition involved, but as far as I know, most everyone has been positive!

The response to my #showmeyourpump campaign has been crazy as well! I can’t keep up—it is unreal! We have had responses from diabetics all over the country, and from all over the world. I have also heard from kids with hearing aids, feeding tubes, etc. How awesome that it is having an impact even beyond the DOC! Keep the pictures coming(:

Kerri:  Is diabetes advocacy part of your competition platform?  Can you tell me about how you plan to use your voice to improve diabetes awareness?

Sierra:  It was my original platform, but before I was Miss Idaho, I didn’t have much of a voice. My platform now is actually a program my sister and I started for kids with developmental disabilities. We put on sports camps for them! The program is called Possibilities for Disabilities. Originally, we just wanted to give them the chance to participate in the fun extracurricular activities their peers do, because we think that sports and music are important to adolescents in finding their identity, discovering their passions, and building confidence. What we soon realized is that the program was doing so much more! We have students at the high school volunteer as “student coaches” and work with the campers. By placing the kids with disabilities in a fun, empowering, positive environment with their peers, it breaks down barriers and helps the kids form friendships with their peers. This has transformed their lives more than anything else! The entire culture of the high school we work with has changed towards the kids in special ed. They have formed identities beyond their disabilities, and are accepted more than they ever would be at another school. I am so excited to have the opportunity to spread Possibilities across the state, and even across the nation, as Miss Idaho!

With my diabetes, the message I try to get across to everyone I come in contact with is this: whatever obstacle they are facing in their life, they can not only overcome it, but use it to become a stronger person, as well as impact the lives of others. There is one girl in my camp who is a high functioning autistic, and has decided to put on a Possibilities camp for her senior project next year. I am so excited. She is doing exactly what I hope I can inspire others to do: take their challenges and use them to serve others.

I love Possibilities for Disabilities, but now that I have a more powerful voice as a diabetic, I am ECSTATIC to use it! Who said I couldn’t have two platforms?

Kerri:  There’s a lot of discussion in the diabetes online community about diabetes stigma.  Have you ever been discriminated against in terms of diabetes?  How did you handle it?

Sierra:  Before my family and close friends were educated, there were some hurtful comments about how my diabetes was my fault, because of the confusion between type 1 and type 2. Aside from that, I cannot recall any other negative experiences, aside from confused and slightly cold questions about my insulin pump. I have been very fortunate!

Kerri:  How can the diabetes community help support you as you make your moves for Miss America?

Sierra:  In a couple weeks, all the Miss America contestants will be publishing their “People’s Choice” videos. America can vote one contestant into the top 15! Only the top 15 get to compete in the televised portion of the pageant. It would mean the world to me if the diabetic community would help me win People’s Choice to guarantee that I have the opportunity to compete with my pump on national television!

Kerri:  Sounds like a plan, Sierra.  Is there anything else you’d like to share?

Sierra:  I am so happy I can have a voice to inspire others who are similar to me, and hope to serve the diabetes community to best of my ability this year! The best way to reach as many diabetics as possible is through the DOC and social media! You can follow my year as Miss Idaho in the following ways:

Twitter: @sierra_anne93, @missidorg
Instagram: missidahoorg, sierra_anne_nicole
Facebook: Miss Idaho Organization

I have also had a lot of people ask me about sending letters and gifts! I adore snail mail, so everyone is welcome to send mail to:  Sierra Sandison, P.O. Box 6159, Twin Falls, ID 83303.  I love you all so, so much! Thank you again for all your support!

Thanks, Sierra!  You can follow more from Sierra on her personal blog, Miss Idaho, and via the #showmeyourpump hashtag.  We’ll be following your journey to Miss America this fall, and supporting you along the way!

Tallygear Winners!

The Tallygear giveaway was fun to run because it helped contribute to a discussion about how people in the diabetes online community are tackling diabetes-related stigma.  The comments section had some great points about erasing diabetes stigma, and I wanted to highlight a few:

“Today I had a good discussion with my sister about the different challenges I face (35 years worth!)—– things that I usually keep to myself for fear of ‘boring’ someone. We both learned something special.” – Deb

“Isabella just started a Dexcom trial so she now has two devices on her 3-year-old body (Omnipod, too). When we go places I never encourage her to wear clothes that cover up her devices. I’d rather people see them and ask us what they are so we can spread awareness and educate them. In fact, Isabella is proud to show off her pods that we decorate…sometimes you forgot that even 3-year-olds can fight off stigmas, too.” - Kristina

“I am stupidly proud to admit that I am becoming a ‘regular’ at my gym. More people wave, say hi and even start conversations with me. More often people are asking me what my D-devices are. And I am more and more comfortable in telling them. And if further asked I actually find a little happiness in explaining what my (and our) T1D is and they actually want to know more. Erasing #dstigma one workout at a time and it really feels awesome. Really.” - Marie C

“I try to help change the perception of T1 by showing my friends/family that my daughter can do ‘normal’ activities and eat ‘regular’ foods!” - Zak

“I work as a nurse in a hospital and while my unit is not diabetes-specific, nearly all of my patients have some form of diabetes. While I don’t think it is appropriate to tell them about my diabetes, I try to have real conversations with my patients about managing their diabetes as effectively as possible. My hope is that I am doing my small part to reduce the #dstigma by giving people the chance to talk openly about their disease.” - Melissa

“My answer to reducing the #dstigma is to talk about my experiences. I don’t hide the fact the I have diabetes, and am always happy to answer questions. Can’t change the world all at once, but a little bit at a time can go a long way.” – Mark

Loopy hates stigma but loves ribbons.

And now, the winners!  The winners of the Tallygear giveaway (chosen at random by the Rafflecopter widget, which tallied blog comments and Twitter interaction) are Jen L, Gisela, and Kristina G! Thanks for joining the diabetes stigma (#dstigma) discussion and sharing your perspectives.  I’ve sent you an email and will send out your Tallygear fun stuff in the next few days.

Thanks to Tallygear for making this giveaway possible (be sure to check out their website and peruse their fashionable, and functional, products), and thanks to you guys for being an advocacy force that is changing the way society views diabetes, one moment at a time.  Like Mark said, “Can’t change the world all at once, but a little bit at a time can go a long way.”

What Do You Want to Talk About?

Last night’s #dsma chat was a particularly good one, because its intention was to generate discussion and feedback about what people in the diabetes online community (DOC) want to talk about.

Over the last ten years, the diabetes community has created some effective and supportive roots on (in?) the Internet. We are a vocal and passionate group of people (living with diabetes ourselves or caring for someone touched by diabetes) and the community seems to help people who are looking for their peers, looking to change something, or simply looking to share their stories. No matter what your level of involvement might be, the DOC is a place where you can find your footing.

So this question of “What do you want to talk about?” is a great one because it can help serve the needs/ hit the goals/ scratch the itch.

The evolution of the DOC is constant, and powerful, and we all have a chance to influence and shape it.  What’s important to you?  What do you want to talk about?

(And if you’re looking for more information on how to jump into the #dsma Twitter chats without losing your mind, check out this Diabetes and Twitter 101.)

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!

Friends for Life: Madcap Recap.

A bulleted list because that’s what bloggers do.

  • My personal schedule had me running around like a chicken with its head (and pancreas?) cut off, and while I felt really lucky to be so busy, I didn’t have enough quality time with people I love.  It’s a nice problem to have, but it was frustrating because now that I’m home, I wish there had been long coffee chats with so many different people.
  • Coffee tastes best out of my new favorite mug –>
  • One of my favorite moments was during the Parenting with Type 1 Diabetes session, when Marissa Town and Melissa Lee started singing the Dexcom “ATTENTIVE” low alarm song, complete with facial grimaces and in perfect harmony.
  • It’s weird how therapeutic it can be to cry in a room full of “strangers.”
  • Even odder still is putting the word “strangers” into quotation marks because anyone living with diabetes has intimate knowledge of moments in my life that even my closest family members can’t quite wrap their head around.
  • It was so nice to meet the team from Kedz Covers, and yet so odd to meet them in Florida, seeing as how they live here in Rhode Island.  Only in the diabetes community do you meet your actual neighbors at a conference 1300 miles from home.
  • (And yes, that’s the “Don’t Mess with Rhode Island, Either” t-shirt, but I negated its awesome message by wearing my bag cross-body style, covering the little Rhody and making it look like I’m on the welcoming committee for Texas.  Whoops.)
  • The “Reducing Social Stigma from Diabetes: A Patient Perspective” session with Richard Wood, Kelly Close, and Adam Brown was one that I wish I had been able to attend, because the stigma related to (and nestled around) diabetes of all kinds is a topic that is very top-of-mind for me.  I’m looking forward to seeing and hearing more about this survey and have been stalking the #dstigma hashtag for feedback.
  • Watching Melissa pass the diaversary torch (so to speak) to Briley in the bar at midnight was a moment that made me laugh, but also gave me goosebumps because marking a diaversary can be intense, but doing it a room full of people who love you is fucking empowering.
  • It was an absolute honor (and wicked fun!) to partner with Dexcom last week, sharing stories and giving away copies of Balancing Diabetes. A huge thank you to Dexcom for their support, and also to the diabetes community for stopping by to say hello at the booth.
  • And thanks to Scott for lending me a pen to use at the book signings, which just so happened to be a pen from George’s office, making me feel like a little bit of George was at Friends for Life, too.  Full circle, there.
  • I loved being part of a session for parents of children with diabetes aiming to answer the questions they might not be asking their own kids, and it was an honor to partner with Adam Brown (of Close Concerns) for this session.  The discussions were intense, but productive, and for anyone in attendance who didn’t end up watching The LEGO Movie that night, here’s a link to what the hell I was talking about.
  • I learned that Scott, aka “Pockets,” keeps an army of diabetes (and non-diabetes related) supplies in his pocket.  The man is half kangaroo.
  • (Happy belated birthday, Pettus!)
  • After Friends for Life was over, Chris and Birdzone flew down to Florida to meet me and we spent a few days at Disney.  Getting ready to head out to the park the next morning, Chris asked why I still had my conference bracelet on.  “I like it,” was my response, because it’s hard to articulate what the green bracelet really means to me, or how the orange bracelets keep me going.
  • I still have my green bracelet on.  We walked through the Magic Kingdom and I found myself glancing at wrists around the park to see if anyone from the conference was there.  I didn’t see any green bracelets.  But I kept mine on in case someone was looking, too.
  • I still have it on now, only I don’t think the cats give a shit.
  • (Total sidebar:  It was Loopy‘s birthday two days ago, and Birdy and I will be making her a “cake,” which equals out to Birdy wanting to eat cake and this is her excuse.)
  • Attending Friends for Life is a place where I can wear my emotions on my sleeve and my pump on my hip.  It’s somewhere I can feel safe admitting the things that weigh heavily on my mind but also celebrate something as simple as a 100 mg/dL on my glucose meter.  And nothing reminded me of this more than when I was walking towards my next session and I saw Briley outside of it, tears streaming down her face.  “I just had my eyes checked.  And they’re totally fine!!  After twenty-five years, they are still fine.”  I couldn’t hug her fast enough, or hard enough, because that’s what you do.  You celebrate the things others would never think to celebrate, and you appreciate the people who understand.

 

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