Dexcom: The Good, The Bad, and The Obsessive

Dexy is one more piece of technology that makes this crazy disease a bit more manageable

On May 4th, my little one entered the live phase of a Dexcom trial at the Barbara Davis Center.  We’ve officially been Dexcom users for 90 days, so I feel like I can give a real look into our lives enhanced with continuous glucose monitoring.  Dexcom is a continuous glucose monitor, cgm, that gives readings every five minutes.  For clarification, Dexcom is a device that is completely separate from the insulin pump that my daughter also wears; because she now has two things attached to her at all times, she has taken to calling her cgm Dexy.  Dexy has a little wire that is inserted under her skin, into the subcutaneous tissue and it measures glucose in the interstitial fluid.  This is connected to a transmitter that sends the information via bluetooth to a receiver that has to be within 20 feet of my daughter at all times.  We chose to get her an iphone to use as a receiver because then her info goes into the cloud via the share app and gets sent to our phones via the follow app.  We get to set high and low alarms on our follow app, which we change based on the time of day, and our phones will alarm if her glucose is out of range.  This device also shows little arrows, it tells if her glucose is stable, trending up, trending down, rising or dropping, and rapidly rising or dropping.  I can even get alerts directly on my apple watch and see her glucose levels right on my wrist.  Wow!   All this technology is fucking amazing, however; it is not without it’s own idiosyncrasies.  

First, the good.  My husband and I can sleep. Yep, you read that correctly, we are getting sleep for the first time since she was diagnosed — 9 long months ago. 9 months without sleeping will turn you into a person you can barely recognize. Not sleeping wreaks havoc on your body, your mind, and your soul (even if mine is as dark as the black coffee I drink).  My husband and I have gone on dates.  Dates where we get to talk to each other and be alone or with other adult friends.  That has definitely been a huge help. We are able to do this because we can still see what is happening with our little one. Starting to see a drop, one quick phone call to make sure someone feeds her something. It also gives the caretaker (usually my mom) a little more peace of mind.  I think the best sentence that has been uttered since Dexy, was my mom saying “I think I’m comfortable and ready to watch her overnight again!” OMG! Yes! My husband and I had a long overdue and much needed overnight date (to celebrate his new job). It was amazing to know that she was in the capable hands of my mom (both my parents have taken the grandparents class at BDC and can do finger pokes, give insulin, and glucagon if necessary) and just be adults for a night. We stayed out too late and drank too much. It’s also been awesome for Frankie to stay with her grandparents by herself and have special time with them at their mountain house. I know these memories will last a lifetime.

Now, the bad, it’s so easy to quickly start to rely on technology.  There is a 2 hour warm up period when you insert a new Dexy.  You would think during this 2 hour period the sky is falling.  My husband and I both anxiously check our phones, as if we can speed up time, waiting for that magic warm up period to be done.   We have also become dependent on the alarms, which we have both slept through on occasion, not  sleeping for 9 months makes you sleep hard at times.  The guilt that comes with sleeping through alarms is crushing.  All the scenarios that run through your head, we really don’t cut ourselves any slack, we are our own worst critics.  Sometimes Dexy is off, by like large margins.  CGMs measure the glucose in the interstitial fluid, this level is different from blood, and can be altered by various factors.  Dehydration, compression, bad placement, you name it, it can affect the Dexy reading.  This can be frustrating at times, especially when the reading was spot on with a finger poke just a couple hours earlier.  False high, false low, it is all just a reminder to always check with a finger poke — learned that one the hard way when treating a random low on Dexy, nothing like a quick overcorrection. It’s a reminder that the newest and best technology isn’t always perfect, although it’s lightyears ahead of diabetes management 20 years ago.  

These are the things that make me obsessive.  I obsess about numbers, about average glucose, about what that means for her next A1C. The other cool thing is that the dexcom app gives all sorts of graphs, and numbers and data that we can crunch and watch and try to improve upon.  That I can obsess over.  How can I be a better D parent and take more control? How can the numbers be better?  Why isn’t anyone else hearing these alarms?  Is anyone treating these highs and these lows? It’s made for phone calls and texts between my husband and I when she’s not with one of us, “Are you treating that low?” “Did you give her insulin?” “What has she been eating all day and why are her sugars crazy?” and finally “Trust me, you know I’ve got this”  That last one is so on point, everyone who we trust to watch Frankie has her best interest at heart.  They love her and want to do the right thing and have been taught what to do in every situation.  My parent’s neighbor even made a point of telling me how “Your mom was so on top of Frankie last night, checking her and making her eat, it was impressive.”  Those are the comments that make me realize I don’t need to obsess all the time.  It’s ok to breathe once in awhile, technology is here to assist us, it’s one more tool in our box.  

Ultimately, I consider us lucky.  Lucky that we have access to this technology and that we can afford it (which is a luxury I don’t take for granted).  Dexy is one more piece of technology that makes this crazy disease a bit more manageable, one more piece of technology that is stuck on my daughter, one more piece of technology that makes my daughter stand out when lined up with her friends, one more piece of technology that people see and ask about, one more piece of technology that makes her part bionic.  My daughter a Bionic Badass!!

 

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It’s Not About The Unicorn Frappuccino

It’s about the misinformation and jokes about a serious disease that are allowed to be forgiven because they’re hidden behind some silly meme and a pepto-pink drink

It’s not about the unicorn frappuccino, a drink the marketing masterminds at Starbucks are riding all the way to the bank. There is no more sugar in that drink than there is any other frappuccino or even a regular soda. Personally, I’d rather spend my $5 and the calories on a real milkshake. Nope, it’s not about a damn drink.  It’s about the misinformation and jokes about a serious disease that are allowed to be forgiven because they’re hidden behind some silly meme and a pepto-pink drink. Honestly, the unicorn frap is just the latest overly sugary fad that people get to slap the word “diabetes” across and have a good old laugh on social media.

Sharing these memes and jokes perpetuates the myths that surround diabetes. I know what you are thinking “Ugh, one more type 1 mom on some personal mission, standing on her damn soapbox.” “Ugh, it’s obviously about type 2, not the bad kind where little kids take shots everyday to stay alive” Guess what? Yep, I am one more type 1 mom, stepping loudly up on my soapbox. And seriously?  Both of the types of diabetes are bad, as is any other medical condition that has serious consequences, although you don’t see people joking about those. Still neither type of diabetes is caused by eating too much sugar, even in type 2 complex genetics come into play.

The reason this really grinds my gears is personal. No one ever differentiates between the two types, all diabetes gets lumped together into one big ugly box. It’s why I cringe every time someone says Frankie is a “diabetic” At our house we always say “She has type 1” or will expand and say “she has type 1 diabetes”.  As an RN in the OB world, where I spent the first 14 years of my career, diabetes was always defined. Our patients were always type 1, type 2 insulin dependent, type 2 diet controlled, gestational insulin dependent, or gestational diet controlled.  They were defined because they are different. They are different diseases with different causes, treatments, and restrictions. Now stepping out of the OB realm, when I receive report on a patient, I always make the nurse on the other end of the phone tell me what type of diabetes the patient has.  I’m sure this request is met with an eyeroll, but I want it differentiated.  To me it’s important, it’s important on a nursing level and more importantly on a very personal level.  

I never want a nurse to give report on my kiddo and say “She’s diabetic”.  It’s not a label I want my kid to have.  It’s where we fail in healthcare, there is judgement and at times you can even hear disgust in a person’s voice when they say a patient is diabetic.  As if the patient brought a disease upon themselves. Which we know as professionals isn’t true; however, those little jokes that people post regularly do start to influence other’s minds and create biases.  I know that I won’t have to deal with judgement when Frankie is little, but as soon as she turns 18 and becomes an adult, it seems all bets are off.   

Over the past 6 months I have definitely become a better nurse when it comes to empathy for my patients with diabetes. I also understand the relief on my patient’s exhausted mother’s face when I said “oh, I totally understand her pump, I have a daughter with type 1 as well”. She was relieved because I get it, I understand the battle they fight on a daily basis, and I am not going to pass judgement at the one blood sugar I test before surgery.  A blood sugar that really tells us nothing about how someone is managing their diabetes.  But most importantly, she knew I know there is a dramatic difference between type 1 and type 2 diabetes.

So, the reality is it’s much bigger than a stupid drink at Starbucks.  We were watching a TV show the other night and all of the characters laughed at a shirt with the tagline “I can’t eat that. I have diabetes.” Cringe-worthy, one more myth that was being shared on a nationwide platform.  My comment to Jason was “Well, just one more reason Powerless isn’t being renewed.”  When these jokes are shared on social media and TV shows it just perpetuates the myths and spreads misinformation about diabetes. It allows biases and judgments to build in people, because joking about “diabeetus” and “sugar comas” has somehow become commonplace and isn’t taboo in our society.  It’s what makes me worried for Frankie as she gets closer to school age. We all know kids can be cruel, and when society has given permission to share jokes about sugar causing diabetes, it gives the kids a free pass to laugh, to point, and make fun.  The kids will think that making fun of the little girl who has a disease because she ate too much sugar is ok; because the adults surrounding them laugh at this and share memes on social media.  This is a battle that my 3 year old is going to be fighting her entire life, which totally fucking sucks. But, you can bet, I will be standing there on my soapbox right next to her, with my gesticulating and my loud Italian voice, fighting to spread valid information and encouraging people to just be better human beings. 

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For the record; this is what Diabetes in a (martini) glass looks like at our house.

Side note:  Here’s the real deal, I’m not innocent and I’m not some big old stick in the mud.  I have a horribly dark and jaded sense of humor.  I laugh at inappropriate things and share inappropriate jokes in the right company.  I have to have this sense of humor, or I wouldn’t be able to survive this beautiful life I’ve been given.