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Posts tagged ‘diabetes’

Unexpected Advocacy.

The last thing I wanted to do was take my cover-up off.

Chris and Birdy (and our friends and their daughter) were at a water park in New Hampshire where kids can run and play in safe-for-littles sprinklers, pools, and water slides, and as the adults, we were tasked with guarding the perimeter.  Pacing back and forth, the four of us kept watch on our kids, ready to jump in at any moment to help them climb a slide, pick themselves up if they fell, or slather on more sunscreen.

I didn’t care who saw my body.  Not really, anyway.  I’ve run miles and given birth (not simultaneously), so I know there are strengths and weaknesses to my frame, but it wasn’t the shape and curve of my body that made me want to stay covered up at the water park.

I didn’t want people staring at the diabetes devices stuck to my body.

“Oh, suck it up.  No one is looking at you.”

Of course they aren’t.  They don’t mean to.  But when someone walks by wearing a bathing suit with a few curious looking devices hanging off it, it’s hard not to notice.  My standard beachwear is a bathing suit with my pump clipped to the hip, the tubing snaked out to wherever the infusion set happens to be living, and my Dexcom sensor taking up more real estate elsewhere.  These items aren’t jarring, and people don’t snicker, but they do look twice because cyborgs aren’t the norm.

Most of the time I don’t think twice about who might look, but on this particular day, I felt self-conscious.  Why?  Who knows.  Who cares.  I just felt eh that day.

But motherhood dictated that my self-consciousness take a backseat to being part of Birdy’s waterpark experiences, so I sucked it up and removed my cover-up.  My insulin pump infusion set was stuck to the back of my right arm, the tubing snaking down and tucked into my bathing suit, where the pump was clipped to the back.  My Dexcom sensor was mounted on my right thigh.  Even though these devices are reasonably discreet, I felt like I had two giant toasters stuck to my body.


Birdy needed help climbing to a higher platform in the play area and I helped her do that, thankful that my pump was waterproof.  We ended up in the sprinkler pad for a while and I was thankful that the tape around my Dexcom sensor was strong enough to withstand the water.  After a few minutes, I got over the whole “blargh – I don’t want to wear giant toasters” feeling and got on with things.

“Excuse me.  Is that an insulin pump?”  All casual, the question came from behind me, where one of the park lifeguards was standing.  His arms were crossed over his chest as he confidently watched the pool, but his question was quiet.

“Yeah, it is.”  I wasn’t in the mood to have a full chat about diabetes, but I didn’t want to make him feel awkward for asking.

“You like it?”

“I like it better than taking injections.  I was diagnosed when I was a kid, so the pump is a nice change of pace from the syringes.”

“I bet.”  He paused.  “I was diagnosed last August and I’ve been thinking about a pump.  But I hadn’t ever seen one before.  Is that it?”  He pointed to the back of my arm.

“Kind of.  That’s where the insulin goes in, but the pump is this silver thing back here,” I pointed to the back of my bathing suit, where my pump was clipped.  “This is the actual pump.  It’s waterproof.”  A kid ran by, arms flailing and sending splashes of water all over the both of us.

“Good thing,” he said.

“For real.”  Birdy ran by to give me a high-five and then took off playing again.

“Your kid?”

“Yep.”

“How long have you had diabetes?”

“Twenty-seven years.”

He gave me a nod.  “Thanks for not making it seem like it sucks.  Enjoy your day,” and he moved towards a group of kids that were playing a little roughly.  I stayed and continued to watch my daughter play, very aware of my diabetes devices that, for the first time ever, didn’t seem quite noticeable enough.

 

(Also, today has been unofficially designated as a “day to check in” (hat tip to Chris Snider) with the DOC blogs that we’re reading.  I read a lot of diabetes blogs, but I don’t often comment because I usually want to say something meaningful, instead of “I like your post.”  (But I do like your post!)  But instead of finding that meaningful comment, I usually roll on and forget to return to comment.  NOT TODAY!  Today I’m commenting on every blog I read, because that’s the name of the game.  I love this community, and today I’ll show that through comments.  So please – if you’re here, say hello!  And thanks. xo)

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. 

*   *   *

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!

*   *   *

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].

CGM in the Cloud: Personal Preferences.

“Why would you want your continuous glucose monitor information in the cloud?”

Fair question, especially coming from folks in the CGM in the Cloud Facebook group, which is heavily dominated by parents of children with diabetes.

I didn’t want to answer, at first, because I didn’t want to say the wrong thing.  When I meet with parents of kids with diabetes, the instinct to protect them is undeniable.  I want to tell them stories about people who are thriving with type 1 diabetes – “Hey, have you heard about the guy who is running across Canada?  Have you heard about the woman who gave birth to twin boys?  Have you heard about the couple who met and fell in love via the diabetes community?” – because that is the perception of diabetes that feels best to share.  It feels good to share successes, triumphs, proud moments.  You can thump your fist against your chest in pride; we are not held back by diabetes.

This is what I want to tell the parents of kids with diabetes.  Their kids will be okay.  Because that’s true – their kids will be okay.  But not without compromise, and that’s hard to articulate because it seems to fly in the face of “your kids will be okay.”  I don’t like reminding people that their kids with diabetes will become adults with diabetes because this disease is forever.  It’s uncomfortable to admit that diabetes is hard.  It’s hard to find words to illustrate the concept of, “I’m fine … sort of.”

“Why would you want your continuous glucose monitor information in the cloud?”

I’ve had some low blood sugars that have rocked me so hard I couldn’t recover, even after I had technically recovered.  Whether you want to admit it or not, diabetes requires extra planning.  Even the best and tightest and most well-controlled diabetes still comes with the threat of lows or highs.  This is why glove compartments end up crammed with jars of glucose tabs, and why back-up insulin pens litter the bottom of purses.  I was always taught to hope for the best – you can do anything with diabetes! – but to have a plan for the worst, should it happen.  Never ride a subway without snacks.  Never put diabetes supplies in checked luggage.  Always check blood sugar before driving.

“Call me when you wake up so I know you’re alive,” is a phrase casually uttered by my mother when my husband is traveling, but the honesty to it stops me cold.  Does my mom worry that something will happen to me at night?

Before Birdy was born, I had a healthy fear of lows, but after she arrived, that fear became something different entirely.  Now, a debilitating low blood sugar doesn’t just touch me, but it could hurt her, too.  When she was a few months old, my husband went away on a weekend trip and it struck me for the first time that if I didn’t wake up, no one would be there to take care of my daughter.  I pictured her in her crib, crying, alone, and without care.  The idea of her going without breakfast hurt me more than picturing my own unresponsive body.

Sounds dramatic?  It’s dramatic as fuck, because diabetes is quiet, until it’s not.

“Why would you want your continuous glucose monitor information in the cloud?”

Why?  Because having someone else able to monitor my blood sugars makes me feel safer.  I can’t make insulin anymore, but I can create peace of mind for myself, and for my family.

So I’m not waiting.  I’m not waiting for bad things to happen.  I’m taking a preemptive bite out of fear by putting another safety net into place.  When I’m traveling for work, I will have my CGM data streaming to the cloud, and my husband and my mother (as needed) will have access to it.  When I am alone in a hotel room, my family will have the peace of mind knowing that they can see my blood sugars while I sleep.  Same for when my husband is traveling and I am alone with our daughter.  As much as I know the CGM companies are working hard to bring this technology to patients, waiting removes the safety net that would help me sleep better at night.

I am not waiting.

 

 

Tallygear Giveaway! Exclamation Point!

Tallygear is awesome, and I’ve been a big fan for many years.  After switching over to the Dexcom G4 continuous glucose monitor, I was so happy to see that Donna at Tallygear had created a case to protect the G4 (and have been using it daily since).  And now she’s up and running with a lot of new cases for the Dexcom G4 unit, as well as some other colorful ways to dress up the otherwise drab world of diabetes devices.

Check out some of her new designs!

Donna was kind enough to send some samples to me, and I’d like to turn that favor around to you guys.  But there’s a catch.  I have three Tallygear “gift packs” (in quotation marks because there are things from Tallygear that I’m including, but I’m sending the packages myself, so there will be some additional surprises to be determined by how much cat hair I can collect from Loopy and Siah … just kidding … sort of …) to give away, but I want to couple this up with the recent, and important, discussions about diabetes stigma.

To win one the Tallygear giveaways, you’ll need to leave a comment here on this blog post or Tweet about this giveaway (see the Rafflecopter widget below), but not in the “promote me!” sort of way.  Instead, I want you to answer this question:

“How will you help change the perception of diabetes today?  #dstigma“ 

As a community, we can help change the face of diabetes, one moment at a time.  Dealing with diabetes-related stigma isn’t something that can be “fixed” overnight, but every time we make diabetes visible in an accurate, educated way, we’re taking a bite out of stigma.  Kind of like McGruff the Crime Dog.  So let’s keep talking.

You can follow Donna from Tallygear on Twitter @Tallygear and on Facebook.  The official Tallygear website, with a complete product listing and a catalog of colors to choose from, is at Tallygear.com.  If you’re one of the winners, I’ll contact you for your mailing address (so be sure to leave a valid email).

And thanks for playing along.  I’m excited to see the discussions that have cropped up about diabetes stigma, and I hope to contribute to them.

a Rafflecopter giveaway

The One About Broken Windows.

Tackling diabetes, one window at a time.

(See also:  caulk)

(And the second part of the CGM in the Cloud write-up will be up on Monday. A long night with a cranky Bird didn’t make for any decent writing. Thanks for your patience!)

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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