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Posts from the ‘Diabetes and Family’ Category

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.

 

 

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!

Sparkly, Like Her Shoes.

As a family, we went to dinner and Birdy’s sequin-covered shoes sparkled furiously in the afternoon sunlight.  Her shoes were downright distracting and I found myself low-staring at them, focusing on the individual sparkles being projected onto the tablecloth at the restaurant.  My brain had hit an uncomfortably steady pace with the anxiety of being under 60 mg/dL for more than two hours, adjusting to the panic but still needing an outlet.  Staring at the glitter on my daughter’s shoes calmed my brain down just enough.

We ordered and ate, and a meal plated with carbs and less-than-normal bolusing still didn’t battle back against the low alarm from my Dexcom.  I felt like a failure, asking Chris to grab a glass of juice from the waitress as my empty dinner plate sat in front of me.

“I’m still low.”  I tested my blood sugar again, hoping to see a number that didn’t require more glucose tabs, hoping the Dexcom was wrong, but a bright 43 mg/dL grinned back at me.  I knew the food would hit but not fast enough.  “Yeah, I need juice now.”

In a quiet hurry, I heard the background noise of hypo management done from a distance.  “I need a glass of juice.”  “Would you like lemonade?”  “No, juice.  Do you have orange juice?”  “We have apple juice.”  “That, then.  Please.”  Chris sat back down at the table while Birdy bounced and played beside me, her shoes throwing sparkles onto the table that were spreading out everywhere, my eyes starting to cave to the low blood sugar.  Peripheral vision was being replaced by these starbursts that were sparkly, like her shoes.  I felt my body pulling in tight and rallying glucose, sending it to the places that were necessary and not caring that I couldn’t hold a fork or keep my mouth from twisting into a resting bitch face/uncomfortable grimace.

Dinner tumbled into a pile of apologies and distractions because I couldn’t get my wits about me, and even once my blood sugar was stable (back up to 72 mg/dL), it still wasn’t staying up, and tumbled again a few more times before bed.

It doesn’t look like much, from the outside.  It’s hard to explain how silent the panic is, how evacuated my brain feels when the hypos hit and stay for too long.  I don’t know how to show someone a Dexcom graph that looks like this and explain how it’s not just the blood sugar number, but the cumulative effect on my body – the exhaustion in my muscles from being clenched in fight-or-flight mode, the sleep my brain needs after a five hour low blood sugar experience, my inability to find the words for what I want to say because my mind is just like, “We’re DONE.”

I woke up with a blood sugar of 230 mg/dL this morning, the product of answering low alarms with frustration and marshmallows, and I corrected the number with the predetermined, carefully calculated amount of insulin.  And I hoped that, for today, diabetes would leave the sparkles on my daughter’s shoes.

Looking Back: Define? Or Explain.

The tagline on my blog is “Diabetes doesn’t define me, but it helps explain me,” and today I’m looking back at the origin of that phrase in a post from May 2006 (This was a discussion with my older brother, and I’m grateful that both my brother and sister contributed to my book, Balancing Diabetes.)

*   *   *

“Diabetes doesn’t define you, it just helps explain you.”

It struck me that he was right.

Darrell and I don’t talk about diabetes very much. I don’t remember ever talking about it when we were kids. We played with LEGOs and built army forts for the hamsters to live in. There weren’t any big diabetes discussions and, quite frankly, we never really talked about it until I started the blog.

But during a discussion we had today, it came up.

“Diabetes doesn’t define you, it just helps explain you.”

Diabetes didn’t make me smart, but being regimented and dedicated to achieving results on a medical level may have made me work harder in school. Diabetes didn’t make me determined, but it may have contributed to my constant drive towards my ever-changing definition of success.

Such perspective is gained from a chronic condition, regardless of its complications. It doesn’t define me, but the strongest parts of my personality may have been gently shaped by the perspective gained from having it.

Diabetes didn’t make me love with such ease, but having tasted my own mortality makes every hug, every laugh, every kiss that much more needed and appreciated.

I hope so fiercely for a cure. I hope for a cure every time I see a press release about new research breakthroughs. I hope every time I test my bloodsugar that the numbers will always be in range. I hope every time I go to Joslin. I hope every day.

“Diabetes doesn’t define you, it just helps explain you.”

I didn’t ask what he meant because I already knew. Diabetes isn’t Me. It doesn’t own me or define me or ruin me. He and I both know that.

When I wake up every morning and test my blood sugar, when I prime the pump, when I calculate the carbohydrates in a meal, I know it doesn’t define me. But when I am feeling anxious or scared about my medical future or just simply overwhelmed, I know it doesn’t define me.

It just helps explain me.

Put On Your Listening Ears.

Our backyard is big and lovely and fenced in on all sides so that when Birdy and I are playing outside, we’re both safe from cars and giant woodland creatures (except the ones that can shimmy underneath the fence … I’m looking at you, groundhog).  I don’t keep my eyes glued to her while she plays, and we can enjoy the sunshine and the garden without feeling paranoid about passing cars, wandering off, etc.

Which is exactly what sucks about the front yard, because that’s the part of the house that the road is closest to.  So while I still need to do things in the front yard (getting the mail, tending the front garden, drawing hopscotch in the driveway), I don’t do anything of those things without having Birdzone front and center in both my mind and my actual line of sight.

Yesterday evening, Birdy and I were working in the front yard garden (I was clearing out some weeds and she was making “houses” for worms we discovered underneath a rock), when my Dexcom started wailing from my pocket.  In retrospect, I felt a little “off,” but it wasn’t until I heard the low alarm blaring from the Dexcom receiver that the symptoms kicked in fully.

“Hey, your blood sugar is whoa, Mom,” Birdy said absently, placing another worm onto a pile of dirt.

“Yeah, we need to go inside and get some snacks, okay?  It’s important,” I replied, looking at the “UNDER 65 MG/DL” warning on the Dexcom screen.

Normally, she listens.  Especially when it’s about blood sugars, because Chris and I have talked with her a few times about how listening is important, particularly when I tell her my blood sugar is low.  But she wanted to stay outside.  She liked playing with the worms.  She liked being in the dirt and gardening.  She didn’t want to have to cut playtime short because Mommy needed a few glucose tabs that she should have brought outside with her in the first place.  [Insert Mom Guilt here.]

“Nooooo waaaaaaay!!!” she said, flouncing away from me and refusing to turn around.

Under normal circumstances, I would have laughed (because “No way!” is a great response), but I was starting to feel shaky and my brain cells connections felt loose, like thoughts weren’t coupling up the right way.  We were in the front yard and I knew I needed to gain control of all potentially dangerous situations in a hurry.

“We need.  To go.  INSIDE right now.  My blood sugar is low.  This is not a joke.” I said.

“No!  I don’t waaaaaaant to!!”

My blood sugar falls fast.  It always has.  I don’t get the long, lingering slides towards hypoglycemia but instead the quick, breathless plummets.  Knowing that I was dropping and watching yet another car drive by our house meant I needed to get control fast and without issue.

Before my body completely caved to the low blood sugar, I scooped up my flailing daughter and walked into the house.  She was freaking out and still forcefully asserting her right to “NOOOO!” but I needed sugar more than I needed her to like me.  A few seconds later, we were both safely contained in the kitchen.  I had a few glucose tabs and waited for my brain to acknowledge them.  Birdy pouted in the corner, staring at her hands and still mumbling, “No way.”

A few minutes later, I felt more human.  “Birdy, I’m sorry we had to come inside.  But my blood sugar was low and it could have become an emergency.  So that’s why you needed to put your listening ears on and come inside.  I wasn’t doing it to be mean; I was doing it to be safe.  Does that make sense?”

“Yes.”

“I’m sorry we couldn’t stay outside.  But we can go back out now, okay?”

“Okay.  I’m sorry I didn’t listen.”

“It’s okay.”

She turned around and pressed her hand into mine.  Something wriggled.  She smiled.

“I brought a worm inside.”

No way.

 

If I Knew Then: Diabetes Blogging.

I wish I had known, at the outset, what a “blog” was.  When Chris suggested I start one back in 2005, the face I made was as though he had shoved a lemon into my mouth.  “A blaaaaahgg?”

I wish I had known that things like SEO would matter – not on the “I need more page views” sort of nonsense, but in terms of being found by the people I was hoping to connect with.  I started blogging in search of others who understood what diabetes in real life was like, and in starting that journey, I picked a blog title that took poetic license into account more so than SEO.  (I guess I should have included ‘diabetes’ in the title, but where’s the fun in that?)

I wish I had known how privacy concerns would change over the course of a decade. When I first started writing about diabetes, I wanted other people to find me, and I was happy to have my real name attached to my writing.  (I also didn’t know any better.)  Openly disclosing my diabetes was an asset in my pursuit of diabetes-related employment (leading directly to my job at dLife) and I was fine with being Googled.  But over time, and with the realization of how pervasive the Internet is, I wanted a less-is-more approach for certain topics.  Not everything needs to be shared, in particular moments where my family is concerned.  We have made certain decisions, as a family, but it doesn’t mean they are the right choice for everyone.  There is no “right choice,” – just varying perspectives and levels of comfort.

I wish I had known how much I needed to connect with peers who have diabetes.  I don’t know what it’s like for every person diagnosed with type 1 as a kid, but for me, there was this long period between diabetes camp and finding the DOC where I felt isolated and alone with diabetes.  I didn’t realize the missing link between “pursuing” and “achieving” my health-related goals was peer-to-peer support.  Having access to a community doesn’t make me like diabetes, but it does make diabetes feel less like something I’m inclined to hate.

I wish I had known there would be trolls.  And that they don’t matter.

I wish I had known how my writing would affect the people closest to me.  When I write about a low blood sugar that scared the hell out of me, I forget that my mother and father also read about that same low blood sugar, and it still scares the hell out of them.  My diabetes, though existing in my physical body, reaches out into my family and might scare them at times, too.

(To that same end, I wish I had known my mother didn’t know that I could pre-write posts and schedule them to go live at any given time.  For a while, my mom thought a new blog post in the morning meant I was awake and fine.  I hated taking that security away from her.)

I wish I had known there would be growing pains as the community expanded and grew in numbers, scope, and passion.  When the DOC was small, it was easy to know all the folks involved and for people to support one another.  Now, there are hundreds and hundreds of amazing voices and perspectives, and keeping up is damn near impossible.  Even the best feed reader and the strongest coffee can’t get me through everyone’s new updates, so I read as many as I can instead of reading as many as there are.  Sometimes I don’t agree with everything I read, but isn’t that the point?  For the community to expand my mind and my perspectives?  For the DOC to be the red pill?

I wish I had known that the community would be bigger than one state, or one country, or even one continent.  I wish I had known that I would find kindred spirits in London and Melbourne and Burlington.  I wish I had known that these people were there the whole time, living with diabetes just like I was, and that I wasn’t nearly as alone as I felt at times.

I wish I had known there would be a lot of people asking “How do I get involved?” Because then I’d be prepared to tell them that involvement requires participation.  You want to get involved with the diabetes community, online or off?  You need to put yourself out there, even just a little bit, and make yourself available.  Volunteer at local JDRF or ADA events.  If support groups don’t exist, start one.  If you want to become more connected online, go to where many people are connecting (try #dsma tonight, even!).  Start your own website.  There are many avenues for diabetes advocacy, and the need for your voice is critical.

But what I did know is that every voice matters.  And every voice has always mattered.  This community is huge and continues to grow because it needs to, and because there isn’t someone who tells the story of all of us.  We tell our own stories, and the power is found in the collective itself.  One diabetes blog or website or newsletter doesn’t define this community (there is no “blog of Sauron”… wait a second …), so share your story – please!  Raise your voice.  And maybe the difference we make can be felt in more that just our own lives.

 

Plastic Apples and Measuring Cups.

Her desk was anchored on either side by tall bookshelves crammed with pretend food.  Plastic fruit – apples, bananas, oranges, kiwis that looked like fuzzy dumplings – and the cardboard shell of cereal boxes.  Plastic slabs of steak with edging to make it look like it had a pat of butter melting on top, and the entire plastic carcass of a chicken, woefully untrue to size, making it the same size as one of the kiwi dumplings. Measuring cups and food scales, lists and charts, meal plans and index cards covered with suggested serving sizes.

It always felt embarrassing, seeing the nutritionist and the dieticians, especially when I was in my teens.  I struggled with my weight as a kid but didn’t ever dip into “overweight,” just more settled on the heavier end of the approved spectrum.  I hated meal plans and the emotional influence of food on my life.  Visiting the plastic food lady as part of the flow every few endocrinologist appointments felt shameful, and I wondered what my classmates would think if they knew I was lectured about eating and food every few months.  Would they know how complicated my relationship with food really was?  Dietician appointments felt like mini-fat camps, and even though I did feel better-informed leaving the appointments, I still felt stupid and ashamed that there were required in the first place.

Moving forward a few decades, diabetes is still very much in play.  I don’t see a dietician as often now as I did when I was growing up, but I do attend a lot of diabetes conferences where registered nurses, dieticians, and nurse educators present, giving me access to refresher courses on food, eating well, and the latest in food and diabetes research. The plastic food is still in play, only the plastics aren’t relegated to my CDE’s bookcases anymore.  Now, the plastics are invading my home.  My daughter’s room is awash with kitchen playthings and miniature versions of what my dietician used as visual aids back in the day.  We talk quite a bit about food and why we eat the things we do.  I try not to let my food-through-the-lens-of-diabetes mindset invade how she sees her plate, even though it’s hard, since we spend so much time together and she sees so much of my diabetes day-to-day management (attempts).

“We need to eat healthy foods so we can grow to be strong and smart and healthy,” I tell her.  “Yeah, and we always need to eat something green with our meals,” she adds, knowingly.  “And sometimes we have juice in the fridge, but it’s for your low blood sugars.”

I don’t want my daughter to think that there are so many food “rules.”  I want her to eat things that make her feel good and that taste good, without looking at her plate and thinking her value as a person rests there.

In her room, she ‘cooks’ up a storm, throwing random items into the plastic stock pot on her pretend stove.  “We need an eggplant, and a hard boiled eggie, and some ash … ash … ASHparagust, and Wonder Woman,” with all of the aforementioned tossed into the “boiling” water.

“What are you cooking, Birdzone?”

“I’m making soup. It will be so delicious. When I’m done, you can have a bowl.”

“What’s in it?”

“Don’t worry, Mommy.  There’s something green in there.  There’s ashparagust.”

March is National Nutrition Month (more about that on the Academy of Nutrition and Dietetics website), and this year’s campaign encourages people to “Enjoy the taste of eating right.”  The phrasing of that message is so hopeful, and without residual shame:  enjoy.  Enjoy the taste of eating right, whatever “right” might be for you.Yes!  I’d like to!  I’ll do that!

My hope is to eventually shake the preposition off “eating with diabetes” and just focus on “eating.”

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