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Posts tagged ‘CGM’

LEGO Easter Robot.

Easter morning dawned bright and early (with a confused little Bird wondering about the strange relationship that appeared to be in place between her parents and a giant bunny).  Egg hunt, breakfast, and then off to visit relatives throughout the day.

Easter has always been one of those “Sunday best” holidays in my family, where people dust off their dresses and shirt-and-tie ensembles and work a higher octane look for the holiday.  I like this tradition.  I like dressing up once in a while.  (It’s a stark contrast to my work-from-home attire, which only includes a nice shirt on the days when I have a video conference call … notice I didn’t mention anything about nice pants.)

But holy eff did I want to throw out every single diabetes device yesterday and go back to shots for a few hours, all because of one, stupid dress.

The dress I wore didn’t have any pockets.  It was a fit-and-flare style dress, which meant that it was cinched in a bit at the waist and didn’t leave a lot of room for my insulin pump to be stashed in the waistband of my tights without looking bulky.  And the disco boobs route wasn’t a good fit, because the dress was fitted in such a way that the pump looked like a giant LEGO stuffed into my dress.  My Dexcom sensor kept getting caught on my tights (I wear the sensor on my outer thigh) and looked again like I was infusing LEGOs to random parts of my body.

I was the LEGO Easter Robot, and it was frustrating.

But despite my fashion-related bitching, it was better for me to keep devices on this time, instead of trying to make the flip to MDI (multiple daily injections) for the day.  Despite eating several times throughout the day and indulging in foods that are historically rough on my blood sugars (read: Peeps), my blood sugars stayed reasonably in range, and I was able to stalk my numbers on my Dexcom graph.

Sometimes it’s better for me to embrace being a robot.

Guest Post: Crusading for CGM Coverage.

I’ve used a Dexcom continuous glucose monitor (from the 3-day STS system to the G4 Platinum) since 2006, and the positive influence it has had on my diabetes management and overall quality of life is undeniable.  But as it stands now, when I reach the Medicare age, my coverage for CGM use will be denied.  Susan Berger, an advocate and caregiver for her husband (who has diabetes), is working to change that fact.  Today, Susan is guest posting about why CGM coverage is important, and how we, as a community, can help ensure that coverage.

*   *   *

Marc and I were high school sweethearts.  He was a year ahead of me.  When he graduated, he did a four year stint in the Air Force, 18 months of which were spent overseas in Okinawa.  Two months after he was discharged, we were married.  We lived in California for five years and this is where our daughter was born.   We returned back home to the east coast – Philly to be exact, where we lived for one year before moving to Harrisburg, PA and opening up a Hobby and Craft Shop.  We operated that business for 19 years, working side-by-side daily.  We also had a son during this period.  In 1996 we decided to go in a new direction and opened an Italian Ice and Ice Cream Shop, once again working side-by-side.  It was just a few months after we opened this business that Marc was diagnosed with type 1 diabetes.  What an irony to be in a business where you’re surrounded every single day with sweet ices, creamy ice cream and all types of toppings needed to make sundaes, shakes, etc., and being a diabetic.

His diabetes has impacted us in so many ways, probably too numerous to mention in one blog post.  Before he was fortunate enough to have a continuous glucose monitor (CGM), there were many times when his sugar would plunge downward so rapidly that I would either have to rush to get some juice into him if he was still conscious, or if I couldn’t catch it in time, use the glucagon to revive him.  Once he got a CGM (paid for by private insurance) I would describe our life as becoming pretty normal, practically back to prediabetes.  Much of the worry dissipated because we knew that the warning would go off he his blood sugar dipped too low.  When the CGM stopped working, and Medicare disallowed payment for a new one, life became extremely difficult once again.  We were back to all the fear and worry.

Marc has had some pretty close calls and it’s only either by luck …  or God watching over him that he hasn’t caused harm to either himself or anyone else.  There have been two incidences where he became completely disoriented while driving.  Both times he had been stopped by the police and fortunately for Marc, who makes his living by doing quite a bit of driving, his license wasn’t taken away.  When they realized he was diabetic, EMS was called to revive him and once he became cognizant, he was sent on his way.  Then there have been those times when I’ve had to revive him in the middle of the night.  I have used the glucagon many times over the past 15 years but my hands still shake when I have to give Marc a shot.


Our children live in Atlanta and I used to be able to visit them on a fairly regular basis, but now, I never leave Marc alone at night.  If he can’t go, then I can’t go.  I missed a wedding in Los Angeles because he couldn’t take the time off.  And I can’t have weekend get-a-ways with the girls because of the fear of leaving him alone at night.

Medicare guidelines do not provide for coverage of Continuous Glucose Monitors. I am an advocate for my husband who desperately needs a new CGM and previously received CGM coverage under private insurance before reaching age 65. I am a crusader for the entire diabetes community, whether you are on Medicare, will soon be on Medicare, have a Continuous Glucose Monitor presently, or might need one in the future. In December 2013 Representative Carol Shea-Porter [D-NH1] introduced a bill into Congress, H.R. 3710: Medicare CGM Coverage Act, which provides for coverage of Continuous Glucose Monitoring Systems by Medicare if recommended by a doctor. My recent post Baby Steps talked about the bill and many members of the Diabetes Online Community (DOC) asked how they could become involved in this crusade. I have just received an email from Congresswoman Shea-Porter’s Legislative Assistant, Marjorie Connolly, and she suggested the following:

  • The most effective step you can take is to ask your own Representative to cosponsor the bill.
  • Call your Congressperson’s DC office and ask for the email address of your Congressperson’s Legislative Assistant for health issues.
  • Email the Legislative Assistant the text of Shea-Porter’s Dear Colleague letter (link) along with a personal note. That way they will understand why the issue is important to you, the constituent, and they will also have the Dear Colleague to show their boss so that he/she will know how to sign on. The roster of the House of Representatives along with phone numbers is available here.

There are many diabetics such as my husband who never realized that when they went on Medicare, their CGM would no longer be covered. When the denial for coverage comes, and it inevitably will because Medicare considers the CGM a precautionary device, the arduous journey through the Appeals system is daunting, exhausting and psychologically taxing. The wait for a decision is beyond description and we have waited for 8 months. The entire process will only get harder as baby boomers become Medicare-age in greater numbers. We need to do something about this sooner rather than later. The only way to fight Medicare’s denial of the CGM is to get the guideline changed.

The best thing that we can do now is to let our voices be heard and join with Congresswoman Shea-Porter and her new cosponsor, Congressman Matthew Cartwright [D-PA17] in asking Congress to pass H.R. 3710, the Medicare CGM Coverage Act of 2014. Here is the Sample Letter and a copy of Shea-Porter’s Dear Colleague email blast. Don’t delay because the sponsors of this bill have begun their full-on push for support and every voice is important. If you are a fellow advocate and want to know how to help, click to download this document.

Please leave a comment on this post or email me [email in the advocate letter] if I can assist you in any way. You don’t have to be a person with diabetes to write the letter. You can be the son, daughter, mother, father, friend or as myself, the spouse of a diabetic. Please do this for all of those who so desperately need a CGM and can’t afford to pay for it out of pocket.

I love my husband and want him to be around for along time.  This is the reason why I became an advocate.  But just as important, in the time that I have been blogging, I have met many men and women who like Marc need a CGM and can’t afford to pay for the device and the sensors out of pocket.  And I have also been contacted by many who are worried that when their time comes to go into the Medicare system, they will experience what we are experiencing now.  I know that together we can make sure that Congress hears our voices and supports H.R. 3710.

*   *   *

Thank you, Sue, for speaking up on behalf of PWD.  (And for more on this issue, check out Kim’s post at Texting My Pancreas, and look through these discussions on TuDiabetes about CGM and Medicare coverage and on the ADA website.)

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?

Half a Juice Box.

Turn on the light.

Fall back asleep.

Press the button on the CGM to make it stop BEEP!ing.

Fall back asleep.

Unzip the meter case and take out my glucose meter.

Lapse back into sleep again; was it sleep or was I passed out and what’s the difference when it’s 4 am and your blood sugar is under 40 mg/dL?

Opting for a juice box instead of the open jar of glucose tabs on my bedside table, I fumbled with the straw and once it hit the foil-covered mark, I drank as though my life depended on it.  Because it felt, in that moment, like it did.

I was 98% sure I would be completely fine in a few minutes, with no lasting effect of the severe low except maybe a hypoglycemia hangover.  But until the juice hit my system and my brain stopped panicking, the remaining 2% of doubt invaded every bit of me.

“I wasn’t afraid I was going to die,” I told Chris, explaining the next morning why I was so tired.  “It was more like I was really aware of how close I was to a dangerous physical state, and I needed to make sure I didn’t cross the threshold, whatever that might be.”

“I wish I had heard the alarm.  We need to do something about that – you need to keep it in a glass even when I’m home, so I can hear it when you don’t.  I need to be able to hear it, too,” he said, giving my shoulders a squeeze.

“Yeah, but what’s weird is that all I could think about, as I was waiting to come up and feeling pretty awful, I kept debating whether or not to drink the rest of the juice box instead of just drinking half.  I wanted to drink the whole thing, and then fifteen other juice boxes and maybe a sandwich, for good measure.  But instead, I was sweating and shaking and confused and at the bottom of the well, you know?  And the only moment of clarity I had was limiting myself to half of a juice box, knowing it would bring me up just enough and not too much.”

Having the first half saves my life, and having the wherewithal to not drink the second half saves me high blood sugars when I wake up.  It’s a humbling moment, realizing what hangs in the balance of half a juice box.

Hypoglycemic Blues.

This past weekend, I was in Omaha (pronounced in my head as “OMAHA!!!!” almost every time), Nebraska for a TCOYD conference, joining in as speaker for the event.

One of the topics in OMAHA!!!! that we talked about was the integration of medical devices, sharing anecdotal stories about life with out diabetes-related robot parts.  Panel moderator Dr. Jeremy Pettus shared a video he made about how using a continuous glucose monitor, illustrating the difference between catching a low when you’re deep in the trenches of it (whoa, 49 mg/dL) versus catching it when it first starts (like 8o mg/dL and dropping).

The ways a CGM has helped improve my quality of life are becoming hard to count:  I feel safer when I drive, when I sleep, when I was pregnant, when I am traveling, when I eat new and strangely-carb’ed up meals … and now I’m more appreciative of how it helps keep me from over-treating those frigging overnight lows.

Thanks, Jeremy, for taking the time to explain this CGM benefit while sporting your pajamas.  Bold move, doctor!

Short Dexcom Break.

It’s not just a matter of slapping on a new sensor, queuing it up, and making use of the data once it’s available on the graph.  Wearing a Dexcom sensor has now become this intricate pseudo-science of site rotation, skin maintenance, and scheduling, thanks to the dreaded Dexcom rash.

My first skin irritation from the Dexcom sensor popped up in August 2012.  It seemed that, overnight, my skin bloomed into this gross, oozing rash underneath the sensor adhesive, making me pull the sensor off after barely 24 hours due to excessive itch and irritation.  At first, I left sensors on too long, coaxing a bright red, blistering rash out on my skin.  It was nasty.  It looked like a chemical burn, and it itched like a son-of-a-bitch.  (How literal is that expression?  Also, there’s a whole Wiki entry on the word “bitch” and it’s fascinating.)

Now, over a year later, keeping the Dexcom as part of my life means bringing in some extra bits and pieces, things like a steroid inhaler, adhesive tape, and wound patches to act as skin barriers.  90% of the time, these strategies work great and I’m able to earn the FDA-approved seven days out of each sensor, without compromising accuracy or comfort.  Usually, one sensor is pulled and I put a new one on immediately, leaving me data-free for only the two hour calibration period.  Seven day seems to be enough time for one site to heal while I use another one, so the rotation from thigh-to-thigh works really well.

But 10% of the time, I need to take a break for a few days in order to let my skin heal.

I’m currently in that 10% moment, and it sort of sucks, because I miss that data security, big time.

After pulling my sensor off on Monday morning, I noticed that my skin was redder than usual, and a little puffy from reaction to the adhesive.  It itched like mad, and looked angry.  I’m traveling for work next week, so I want to make sure the sensor I have on as I’m switching time zones and taking red-eye flights is good to go.  I decided to give my skin a two or three day break, planning to stick the new sensor on Thursday morning so it would be in awesome-mode by the weekend.

I’ve been wearing the Dexcom every single day (with few exceptions) since I was pregnant, and being without the CGM data is a hard adjustment.  Before bed is particularly tricky, because I rely on the IOB on my pump and the direction of my CGM graph to dictate whether or not I set an alarm for 3 am to check my blood sugar.

Last night:  My blood sugar was 182 mg/dL before bed at midnight.  I had eaten a late meal (10.15 pm), so there was some insulin on board from that bolus.  I had gone to the gym to run around 7 pm, so there was residual exercise in the mix, too.  Normally, I’d pop my low alarm up to 70 mg/dL on the Dexcom and stick it in a glass overnight, but without the CGM to help guide me, I set the alarm for 3.30 am.

(In)Conveniently, Birdy woke up at 2 am, so I tested then (150 mg/dL).  I took a correction bolus and checked again at 3.30 am (110 mg/dL), and woke up this morning at 104 mg/dL.

Even though it worked out fine, blood sugar-wise, it was the insecurity of not having access to streaming blood sugar data that made me twitch.  The sensor is bulky and the receiver is easy to forget, at times, but the inconvenience of robot parts is outweighed by the information I get from a CGM.

… which makes me look forward to Thursday’s sensor reboot almost as much as I’m looking forward to Sunday’s second-to-last Breaking Bad.  :)

mySugr: Feeding the Diabetes Monster.

At first, I was all indignant about the fact that diabetes was portrayed as a monster in this app.

“I can’t hate it!  Or fear it, right?  That makes it a tumbleweed of psychosocial turmoil, doesn’t it?”

In efforts to truly test the app, I went all in and embraced the monster.  Which is why I’ve spent the last few weeks playing with the mySugr app, developed by a team of PWDs in Austria. One of the team members, Fredrick Debong, and I had the opportunity to hang out again last week at Doctors 2.0 & You, and I remain impressed with his approach.  It was refreshing to see a long-time T1D’er (dx’d at the age of four) taking on his disease in a very new, very inspiring way.  Regarding mySugr, Fredrik offered, “With the mySugr Companion, we turn diabetes therapy and logging, a normally tedious chore, into something exciting! My personal inspiration for the app is based on my own life with diabetes – now approaching 30 years, which also include a three-year stint of diabetes burnout. If the mySugr Companion can make us smile while pricking our fingers, take pleasure in our small daily victories and feel the progress we make, then we change our world for the better.”

I’m all about small victories.  Let’s dive in!

Per the set up instructions, you’re encouraged to name the monster, so I went with the current arch nemesis in our home:  Norman Price.  (If you’re not hip to Fireman Sam, Norman Price is this little jerkface who lives in the town of Pontypandy and seemingly lights everything in a fifteen mile radius on fire.  He’s good for keeping the firemen busy, but life would be much smoother if Norman Price was shipped out to sea.  Hence, Norman Price became my diabetes monster.)

After filling out the settings tab (offering up information like “on an insulin pump,” “measuring blood units in mg/dL,” “carbs measured in grams,” and setting the hypo and hyper thresholds), I was ready to roll.  And still a little skeptical, because I’m wary of most apps.  I wonder how long the quantified self apps can hold my attention (even though, in full disclosure, I have been using the RunKeeper app since last November).

Inputting data on this application is easy, and graceful, not a clumsy casino game-esque scroll bar or a tangled web of things you need to click on.  Hit the plus sign, enter the glucose value, and any other details you want to make note of.  The one line that didn’t make it into the screenshot here was “Notes,” which to me is the best line ever:  an open field to put in whatever you’re feeling.  There were several open field note options throughout this app, which is brilliant because, try as they might, app developers cannot make a drop-down menu long enough to cover all the different variables that impact diabetes management.

I also liked how there were some standard, and cleverly illustrated, “tags” you could use for data input:

Each data point logged, and tag added, and note noted, earns “points” for the user, which are tracked on the home screen.  I find logbooking to be tedious and boring and lacking any/all incentive (because the reward for good behavior is … to do it all over again?), so even simply  seeing a point value climbing as a result of my efforts to stay on top of things makes enough of a difference to keep me attempting to earn.

I’m only experimenting with the standard version right now, but am thinking about upgrading to Pro.  In the meantime, I’m trying to earn a few days of Pro by use of Challenges.  For example, I’m currently working through the Greenhorn Challenge, which encourages me to input enough logging data to earn 50 points, at which time I’ll be awarded one day of Pro use.  Sounds like low-hanging fruit, incentive-wise, but it works.  Which is probably why it’s hanging so low, yo.

A few things to change?  I’d love to see a reminder – that you can CUSTOMIZE – for updating your logbook.  While I might throw the phone if it nagged me, having a reminder that I can set/unset (“It’s been six hours since your last glucose test!!”) would be handy.  I’d also like to see an open field for inputting exercise, as I don’t often exercise in perfectly round numbers, and it would be great to see an illustrated tag field in the future for exercise options.  Basically, I’d love to ditch RunKeeper and have mySugr take over entirely, logging everything.  The reports function is nice, as far as PDFs go, but having something I could export into an editable document would be more useful, for things like basal rates, insulin-to-carb ratios, etc.

I also need to mention the sounds:  THEY RULE.  I know how goofy it sounds, commenting on the little whizzes and clicks of an application, but the sounds on this app are faintly robotic, and I feel like I’m virtually ticking something off my To Do list when I tag a data entry or enter a blood sugar.  Even when you press the “monster” and he squeals for attention, it’s entertaining and borderline cute.  A++ for sounds on this app.

It’s hard to say how long I’ll keep at using this application, since I’ve only been using it for two weeks.  But, to be honest, it was kind of nice to feed the monster and feel a little removed from it.  Or maybe freed from that need to be all harmonious with it.  By distancing myself from it and letting myself treat it as a task-oriented “game,” it makes the philosophy of “test, correct, and move on” easier to adopt.

And Birdy loved it, which makes me like it more.   She likes clicking on his avatar and seeing him flap his arms around and squeal animatedly.  She likes hitting “done” when I finish entering meal data because that’s when Norman simulated chewing and says, “YUM!”

“I want to see the little Norman Price diabeedles guy.  He’s so frustrating sometimes, isn’t he, Mawm?  But not all the time, right, Mawn?”

“You are so right, Birdzone.”

Want to download the application and take it for a spin yourself?  Click here to go to iTunes.  You can find out more information on the mySugr website, and learn about the Companion version, as well as the coming-soon Junior version.  And you can learn about the Monster Pack (aka the development team), too.  mySugr makes the monster easier to manage, even if he’s a sometimes frustrating, but not all the time, kind of guy.   Clever application, and one that I can see inspiring PWDs around the world to take their monster to task.

Disclosure:  I don’t have any financial anything tied to this company.  I like Fredrik, and he asked me to try out the application.  So there you go.

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