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Smash.

It slipped out of my hand and smacked against the tile floor, making a thick, heavy sound that went silent and caused guilt almost immediately, like dropping your mom’s favorite Christmas tree ornament and watching it smash into a dozen pieces.

Brand new bottle of insulin, used previously for one, single pump cartridge filling.  I had just taken it out of the insulin bottle protector I use to keep it safe.  The insulin escaped from the bottle via a small crack at the bottom, created a small, bandaid-scented puddle on the blue bathroom tile.

“Shit.  SHIT,” I muttered angrily, the pump cartridge needle held uselessly in my other hand.  (I thought briefly about taking a syringe and drawing back as much of the puddle as I could, and then reminded myself that whatever I earned was going to be injected into my body, and also, gross.)

Loopy wandered in and stuck her fuzzy, gray nose towards the puddle, intrigued.

“Ew, no, Loopster.  Hang on,” and I reached over to grab a wad of toilet paper to mop up $140 dollars worth of insulin spreading uselessly onto the bathroom floor.

I thought about insurance coverage, and the pharmacy down the road that would allow me to pick up a new bottle in a pinch, and the insulin pen at the bottom of my purse, and my job, and my support system and I felt guilty and blessed and lucky and grateful that, downstairs in the fridge, two full, pristine bottles of life-sustaining Humalog waited in the butter compartment.

 

How Real Do You Want It?

Over the last few weeks, I’ve been watching the articles about Lisa Bonchek Adams circle, ranging from the New York Times opinion piece by Bill Keller to the one written by Emma Keller (his wife) for The Guardian (which has been removed from The Guardian site but lives on in the archives), to the response piece written by Brian Loew at The Healthcare Blog and analysis by Susannah Fox on the Pew Research Center Fact Tank blog.

(That’s a lot of links in one paragraph.  I’ll wait while you click.  And please note that none of those links go to any dancing gerbil .gifs.   But this does.)

Lots of discussion about a patient who is sharing raw and unfiltered details of her experiences with cancer through social media venues.  For better or for worse, this is the new scrutiny of health on the net, and of real life chronicled on the Internet.

“Are those of us who’ve been drawn into her story going to remember a dying woman’s courage, or are we hooked on a narrative where the stakes are the highest? … Would we, the readers, be more dignified if we turned away? Or is this part of the human experience?” – Emma Keller

For me, chronicling my experiences with diabetes, it’s not for the “outsiders” who are looking in; it’s for the people who share that same condition, same disease, same struggle and who learn, thrive, and persevere through the power of common community and understanding.  Readers may have the option to “turn away,” but for those who live with chronic illness, we have no choice but to look directly into it.

Is there a right way to deal with illness?  A wrong way?  How real do you want it?

 

I learned about living with type 1 diabetes, and the “forever” journey that it is, through other people who had it.  Blogging wasn’t the first time I came into contact with other people living with type 1 diabetes.  Community came through the Clara Barton Camp in North Oxford, MA, where every camper had type 1 diabetes and almost every staff member does, too.  But there was a lonely, isolating gray area between aging out of camp and the coming-of-age of the Internet where diabetes was difficult for me.  Being a teenager, and then becoming an adult, was a tough transition, and even though I had a good support system through my family, friends, and medical team, I was lost in a sea of people who didn’t understand how light diabetes could feel on some days and how heavy it was on others.

Some people are uncomfortable with the idea of sharing so much private, personal health information on the Internet.  Hell, I totally understand that sentiment, as I was fumbling through Facebook yesterday trying to figure out how to delete people I hadn’t interacted with in years.  It’s not a flippant decision, the one to advocate for your own health and to share your story.  Scrape past the hesitation and the fear, however, and you’ll find people who are empowered by sharing, and lifted up by a community that has intrinsic knowledge of the places that hurt the most.

Over the last few years, I haven’t felt the “diabetes won’t stop me!” mentality I unwittingly held close for the first two and a half decades with this disease.  Though my health is still good and I am grateful, I’m seeing the emotional and physical manifestation of years with type 1 diabetes in sometimes small, and other times enormous, ways.  Patients with diabetes are writing about climbing mountains and running marathons and giving birth, but we’re also writing about complications like depression, eye disease, and eating disorders.  Even if it makes you feel uncomfortable, it’s real.

Being honest about life with illness and disease can be the best, albeit non-prescribed, ‘medication’ yet.  While it may also frighten and unnerve, honesty and community can validate, and empower, and inspire.

To quote Morgan Gleason, the fifteen year old who contracted meningitis while getting an infusion for an autoimmune condition:  “I am the patient.  I need to be heard.”

Riddle Wrapped in a Mystery Wrapped in a Panda Bear.

Was it the food I ate?

The timing of the pre-meal bolus?

The amount of insulin I took to cover the meal?

The insulin:carb ratio I employed to calculate the dose?

What the hell made me so high after lunch yesterday? *

Diabetes can be like a set of nesting dolls, with each influencer nested neatly inside of the next one, looking deceptively like the previous one.  Finding the root of a problem can require a lot of variable unraveling.  It’s a riddle wrapped in a mystery wrapped in a … a panda bear.

*  I was high because I miscalculated my lunch bolus.  Damn you, elusive spinach carbs!

If I Knew Then: Continuous Glucose Monitoring – Dexcom.

I tried my first CGM system back in 2006 (this post outlines the very first awkward sensor application) and have spent the last seven years or so being thankful that this technology exists.  If I knew then what I know now … actually, I started on a CGM as quickly as I could, and stayed on it.  Why I wanted a CGM is an easy question to answer, but there are a few things I wish I had known before starting out:

I wish I had known that some of the sensors would hurt.  So many diabetes devices are branded with “pain-free!” and “barely feel it!” advertising taglines, which I think is crap.  We’re talking about a needle that pierces your skin and leaves a wire behind, underneath your skin, for a week at a time.  To think that every sensor will glide under your skin with barely a whisper is bullshit.  Some of the sensors hurt like hell when they go through my skin, and sometimes it takes an hour, or a day, for the site to settle down and not feel so tender.  But most often, it is a reasonably quick pinch and then reasonably painless for the duration of the wear.  Your mileage may vary with each and every sensor.

I wish I had known the data would be addictive at first.  The first time I wore a Dexcom sensor, it was back in 2006 and was one of the first marketed versions of the system.  But I was hooked on the data.  I looked at the receiver every five minutes and went bonkers trying to make sense of the trends.  The trouble was that the readings were far less accurate back on the Dexcom STS, but I took them as seriously as the numbers on my glucose meter.  For the first few weeks of wearing the Dexcom, I drowned in data, obsessively checking it and chasing slight blood sugar climbs with aggressive correction boluses.  I needed to learn to let the data flow into my management, not change the flow of my management.

I wish I had known I would go through a data burnout – and that’s okay.  After I gave birth to my daughter, I went through some post-pregnancy burnout (adjusting to motherhood put my diabetes on the back burner for a few months) and for several weeks, the Dexcom was used to monitor my overnights (watching for lows), but not much else.  I wasn’t in a mental state to micro-manage my numbers, and instead I needed the Dexcom graph to confirm that I was at a stable enough blood sugar to take care of my kid.  The data was too much at times, and I frequently turned off the high alarm because it BEEP!ed relentlessly.

I wish I had known that thresholds were individual choices.  Everyone manages their diabetes in a different way, and even one, single person can have varying styles and preferences.  For a few years, I wanted to see my blood sugars between 60 – 220 mg/dL.  When I needed/wanted tighter management (pre-pregnancy and pregnancy), my thresholds were between  60 – 140 mg/dL.  And now, I keep my high alarm set at 140 mg/dL.  I like knowing when my blood sugars go over 140 mg/dL because that gives me a chance to head them off at the pass and keep them from climbing into the 180’s and 200’s.  Some people roll their eyes at wide thresholds, while others judge for not having the lines “tight enough.”  Where you set your CGM alarms is a personal decision and one that needs to work for you and your medical team.

I wish I had known, and had been ready to accept, the fact that wearing a second device was going to be a pain in the ass.  I wear my sensor on my outer thigh and the bulge is pretty obvious at times.  When I go running, you can clearly see the outline of the sensor through my running pants (and you can almost read the word “Dexcom” through running tights).  In a more fitted dress, the lump on my thigh is unmistakable.  And sometimes if the sensor is a tough too high or too low, it’s right underneath where the pocket of my jeans sits, making it feel particularly lumpy and awkward.  Of course, there are plenty of times when it’s barely noticeable, if at all.  (And it’s always fun, and a bit cheeky, to talk about “the bulge in my pants.”)

I wish I had known that I would eventually learn to trust the algorithm.  At first, I had to learn how to use my CGM, and I had to let the transmitter “learn” me.  The numbers I saw, when compared to my meter back in 2006, weren’t close, but I needed to understand that the CGM provides trends, not exact blood sugar results.  (The thing doesn’t even test blood sugar, but instead interstitial fluid.  Knowing that, however, still doesn’t make me want to throw all technologies across the room when the meter and the CGM are 100 points apart.)  And even now, using the most recent iteration of the Dexcom system (the G4 Platinum), the results are almost spot-on with my meter, but I need to remind myself to test my blood sugar to confirm how accurate the CGM is now.

I wish I had known that there could be an allergic reaction to the Dexcom sensors, but that it could be managed with someone as simple as a high-tech bandaid.  After spending months dealing with a very volatile rash caused by my skin reacting to the Dexcom sensor adhesive, a reader suggested that I use a Johnson & Johnson Toughpad underneath my sensor.  This simple solution worked to cure my Dexcom rash.

I wish I had known that the information I (hunt and) gather from my Dexcom data has made my diabetes easier to wrangle in.  Sure, the thing alarms all the time and yes, wearing a device isn’t ideal.  But when it wakes me up in the middle of the night because my blood sugar has dipped below 60 mg/dL, or when I can check it before driving and see, with confidence, that my blood sugars are stable before getting behind the wheel?  For me, that makes any and all of the inconveniences worth it.

What did you wish you had known, before trying out a CGM?

OMG MY PHONE.

“WaitasecondIcan’tfindmyphone.”

A sentiment that comes tumbling out as one, single word, and impales me right through my social-media obsessed heart.  (Not really my social media obsessed heart, but the heart of someone who is in phone-tether-mode thanks to my littlest Bird, my job, and my diabetes-related discomfort at the thought of being out-of-contact with people who provide emergency medical care, should it ever be required.)

Being prepared is my unofficial mantra, and one I follow through on, according to the size of my purse.  I really try hard to be ready for diabetes needs, child needs, and random needs through the contents of my purse.  (Glucose tabs for lows?  Got ’em.  A pack of gum for when blood sugars make my teeth feel squirrely?  Nailed.  Snacks for Birdzone?  Supplied.  Wallet and keys required for making the car go places?  Yep.  Ubiquitous back-up insulin pen of Humalog that’s hopefully not expired, and CGM receiver, and glucose meter?  Mmmm hmmm.  And a stash of weird items – quarters, plastic green army men, parking receipts for the airport garage, dead test strips, and pieces of chDiabetes Phoneewed gum wrapped up in Dunkin Donut receipts … gross, I know.)

Weirdly enough, if I was away from home and didn’t have my insulin pump attached, I wouldn’t panic.  I would test my blood sugar and, depending on how long I was going to be out, would make decisions whether or not to make use of the insulin pen.

But if I left without my phone?  A cold, icy wave of panic would wash over me, that same feeling that happens when  I pass a police officer speed trap sitting under the overpass on Interstate 95 and I spend the next minute with weak knees and that frantic “Am I about to get a $385 speeding ticket?” feeling.

“OMGMYPHONE.”

I need a priorities detox.

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