But Not For My Head…

Toupee Glue

I recently mentioned using toupee glue to keep my Navigator CGM sensors attached.  With all of the packing and unpacking from our recent move, I found it!  You’re looking at a genuine bottle of “Ultra Hold” toupee glue.  This internet purchase landed my information on at least one hair replacement e-mail list.  No irony there, right?

Freestyle NavigatorThe Navigator CGM was a pretty sweet continuous monitor system.  Unfortunately it’s not available in the U.S. anymore.  I really liked that system, but the transmitter was really hard to keep on.  It was much bigger than anything out today, but it made up for its size with an insane transmission range.

The system worked great for me, and I was officially addicted to the information it provided.  Like everything, supplies were limited.  If a sensor came off, I was out of luck.

So I tried a bunch of tricks to keep them attached.  Everything from the common Skin-Prep, I.V. Prep, Mastisol, and Skin Tac (I spilled a bottle of that once.  What a nightmare to clean up), to the less-common things like false-eyelash glue and Vet-Bond, a glue used in veterinary surgery.

I tried nearly every tape known to medical mankind but still needed something better.  Though I do credit this part for helping me find my favorite tape so far; OpSite Flexifix.

inflatable toupée

Some time later a friend said something about trying toupee glue.

Why not, right?

It worked well, but was messy.  There is a brush applicator, just like rubber cement.  I applied it everywhere except around where the sensor actually penetrated the skin.  I still needed extra tape around the edges, but otherwise it worked very well for me.

One night I was prepping my sensor site and applied the toupee glue to my arm.  I walked by the refrigerator and bumped into the freezer door with my arm.  I got stuck.  I tried pulling away, but instead of my arm coming loose the freezer door pulled open!  I eventually worked myself free from my kitchen appliance and had to laugh.  There I was, shirtless, wrestling with my freezer door to release my arm.

What if I needed to call for help?  Can you imagine that phone conversation?


 I’ll Read it For You

Are you on the move? Let me read this to you…

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mySentry Trial: The mySentry Unit

Last posts in this series: mySentry Trial: Starting Up & mySentry Trial: Wearing the Sensor

mySentry

The mySentry device is a remote display station for the Metdronic Paradigm pumps.  Retail price is $3000, and I’m not sure whether people have had success getting their insurance to cover it or not.

I think it’s fair to say that the intended market for this is parents or caregivers who want to be better able to monitor blood sugars of a loved one.

This concept starts out as a really big deal for parents who’s child with diabetes sleeps in another room.  But it also proved to be a surprising convenience even for me, who sleeps only a torso away from my pump.

Initial Communication

6 feet

I had a lot of trouble getting reliable communication between the pump and mySentry.  I placed mySentry on a nightstand table next to my head.  Not even an arm length away, and maybe three feet away from my waistline where the pump was.

The first night I was plagued by communication problems.  mySentry couldn’t find the pump, and would display a message and sound an alert.

With all of the problems I had getting the pump and sensor to communicate it reinforced my perception that the overall communication of everything was under-powered.

Unable to find pump

The documentation says that if the pump is within six feet of mySentry the communication should work.  That was not my experience.

There is a component of the system called the “Outpost” which acts like an amplifier or repeater.  It plugs into an electrical outlet, collects the information from a pump that is within six feet, and zaps that info to the mySentry display.  According to the documentation, the mySentry and the Outpost can be up to fifty feet away or greater.

I plugged the Outpost in at the base of my nightstand table, but that didn’t resolve the communication issues.  I tried a few different locations, and eventually jerry-rigged an extension cord to give the Outpost a birds-eye view of me and my pump while I slept.

I spent a ridiculous amount of time on this little graphic.  Kim would be so proud of me.

 

Jerry-Rig

 

It seemed like flying from Minnesota to Iowa with a layover in New Mexico, but it solved the communication problems.  Unless I rolled over and was laying on the pump.

Now We’re Talking

Once I got most of the communication issues figured, I started to enjoy the convenience of having so much information available in the blink of an eye.  I could see my interstitial sugar, my pump battery level, insulin in the pump, when my next sensor calibration was, and how long I had left on the current sensor.

Information

 

It was a real surprise to me how much I valued seeing all of this in one glance, with visual representations and colors (I didn’t have to work to interpret numbers, etc.), and without having to pull my pump out and navigate through menu screens.

I liked this.

A lot.

Graph

 

Alarms, Alerts, Light

The alarms and alerts are plenty loud, even on the lowest volume setting.  When an alert or alarm went off, I still had to pull my pump out to acknowledge it.  I didn’t like that much, but can understand the safety concerns.  There have been days where I’ve pressed the snooze button on my alarm clock without knowing it.  Sleep is a powerful force.

The screen brightness can also be adjusted, but even on the lowest setting it felt pretty bright.  I’m a pretty easy sleeper, so it didn’t bother me much.  But if you are the sort that needs darkness to sleep, this might be an issue for you.

Overall?

It was a great convenience, as I mentioned above, to see all of that valuable information so quickly and easily.  In terms of blood sugar safety, it only works if I can tolerate wearing their sensor, which I couldn’t.  There is a lot of talk about their new sensor (Medtronic Enlite) being better and easier to wear, but it’s not available in the U.S. yet.  No current news about when we might see it here.  What’s that saying about the strength of a chain and its weakest link?

This experience did open my eyes to the value of having information available in multiple locations.   Thinking about my e-mail, contacts, and calendar, that information is available on whatever device I use.  It has me spoiled.   I want that same access in my diabetes devices.  I want them to talk and share information.

Would I Buy?

No.

But I’m not the target market for this device.  If my child had diabetes and wore a paradigm system with CGM, I would try really hard to make it happen.

Questions?

If you have any questions about my experience with mySentry, please don’t be shy.  Leave a comment, or contact me privately, and I’ll do my best to answer.

Next post in this series: mySentry Trial: CareLink Pro

Disclosure

I received all of the pump supplies, components, and training from Medtronic, free of charge.  I was not asked to write or say anything about my experience, I was not given any limits around anything I did write or say.  I did not receive any compensation other than the opportunity to try their products.

mySentry Trial: Wearing the Sensor

Last post in this series: mySentry Trial: Starting Up

I wore the pump for about a week before starting on a sensor.  That time was used to become familiar with the basics of delivering insulin with a pump that was brand new to me.  My sensor training went great, and without any trouble I was up and running.

I own a Dexcom SEVEN+ system (a different brand of CGM) and decided that I wanted to wear both devices to get a feel for how they compare.  I didn’t do any scientific comparisons, I didn’t keep any detailed records, nothing fancy.  Just anecdotal observations.

Medtronic and Dexcom CGM Transmitter

The transmitter from each system

The first low I had while wearing both systems just about rocked my socks off.  Lows are often unsettling, especially when right in the middle of something, and on top of that I had both devices buzzing and beeping at me.  It was completely overwhelming, and I questioned whether I’d continue to wear them both.

But I did continue, and I discovered something very interesting.  When one system was off (not matching up to actual blood sugar numbers), they were both off.  So maybe perceived inaccuracies between brands of CGM technology actually come right back to something weird happening in the wearer’s interstitial fluid rather than either of the devices being wrong.  That was a real eye-opener for me.

MedT Sensor Introducer needle and device

Huge needle

Inserting the Medtronic CGM sensor was surprisingly painless for me.   During the course of twenty-plus sensors, there wasn’t a single one that hurt.  This surprised me because the needle (and the sensor, for that matter) are pretty big.

Actually, the needle is huge.

In this picture, you see the sensor and needle loaded into the Sen-serter, a spring-loaded sensor insertion device.  For the record, I am a fan of spring-loaded insertion devices.  I like that they help me with a quick insertion, something I’ve always had trouble with doing manually.

Again, I want to say that, even though the needle is the largest I’ve seen/used, not a single insertion hurt.  Not even a little bit.  I had one that bled like crazy, but even that was pain-free.

The process after insertion was slightly confusing though.  There is a 5-minute “wetting” period after insertion.  What that means is that you have to wait for at least 5-minutes before plugging in the transmitter.   Once plugged in, the clamshell is supposed to show a green light (that part is kind of cool. It seems the light is buried way inside, but still shows through the clamshell skin).

There was a couple of times where I didn’t get the green light, and I wasn’t sure why.  I would disconnect the transmitter and try again, and then it seemed to work fine.

Calibration is also a bit harder (the system is less forgiving of blood sugar on the move).  Jeff talks a lot about calibrating in his CGM post (a wealth of tips and knowledge), and something that Wil talks often about too.  The post I’ve linked to for Wil is quite old, and many things have changed since, but still offers a lot of wisdom around calibration.

CGM Integration

The CGM integration into the Medtronic pump felt very sophisticated compared to what I was used to with the Dexcom system.  I could dig deeper into the historical data, I could see the amount of time left on the sensor, and I could see when the next calibration was due.

Queued data rocks.  If the clamshell transmitter loses connection to the pump, it can store up to 40-minutes of CGM information.  Once the communication is re-established, it back-fills all of that information into the pump.  This was great for when I was taking a shower, or just after basketball when my pump is in my locker and I’m cleaning up.  I had very few gaps in my CGM graphs.

Another thing I really enjoyed was the ability to silence alerts for a set period of time.  I used this when I knew my CGM wasn’t tracking very well and didn’t want to be pestered by any of the alerts.  I could tell it to be quiet for whatever period of time I wanted, and it left me completely alone.

Wearing the System

Physically wearing the system proved to be more troublesome.  Especially during basketball.  I made a little video to explain.

I’ve never used more extra tape and crazy solutions to keep a CGM sensor in place.  Ooh, wait.  That’s a lie. I once used toupee glue to keep my Navigator sensors on.  That probably deserves its own post…

These sensors are approved for three days, which feels really, really short.  That being said, there are times where my Dexcom sensor itches so bad by day 5 or 6 that I’m ready for it to be gone.

And yes, I know that people restart their sensors.  Officially I did no such thing.  Unofficially?  I couldn’t keep the damn things on long enough to do it.  One or two basketball sessions and they were toast (clamshell flop).

Another thing I had trouble with is the holes they left in me.  I don’t know if it’s due to the size of the sensor, or the clamshell flopping, or something else, but these things seemed to leave much bigger (and more irritated) holes in my stomach.  In fact, the holes took longer to heal than the three days each sensor is approved for use.   I know my stomach is no masterpiece, but it looked like it had been shot with a shotgun by the time I had used a couple months worth of sensors.

Last Two Small Irritations

I once got a CGM alert on the last screen of programming a meal bolus.  After confirming the CGM alert, I had to start the whole bolus programming sequence over again.  I know it’s not a big deal, but it bothered me enough to make a note of it.

In that same vein, when I got a CGM alert at night I would turn on the back-light to see what it was.  After acknowledging the alert, the back-light turns off.  I’d have to turn the backlight back on to program my correction bolus, or set a temporary rate, or whatever action needed doing.  Again, a very small thing in the big picture, but it bothered me.

Last Two Large Concerns

The CGM alarms on the pump are way too quiet.  Dangerously quiet.  Can’t hear them at night quiet.  This was one big concern that I heard from many readers.   I didn’t hook up the MySentry device for a few days after starting the CGM, and many (most?) of the pump alarms without MySentry watching over them went unnoticed.

The last concern I have is all about the weak signal.

Weak signal, weak signal, weak signal, weak signal.  All the time, weak signal.

With the transmitter on one side of my body, and the pump on the other side, weak signal.  Talk about feeling fat.  Holy crap.  Feeling fat AND having a device beep at you all day to remind you of how fat you are. I’m not a fan.

I have never had to adjust my life to a diabetes device more than when I was wearing this system.

In my years of pumping I have found a “sweet spot” on my belt for my insulin pump.  It’s become a part of my movements to keep that sweet spot out of harms way.  When I get in the car and put my seatbelt on, the sweet spot is safe.  When I am navigating tight spaces, I’m subconsciously aware of that sweet spot and keep it out of the way.

I had to change where I put my pump to accommodate the weak transmission of information between the transmitter and pump.  It caused major disruption for me.  Remember how I broke the belt clip in the last post?  I wasn’t wearing my pump in the sweet spot because the transmitter couldn’t talk to it.

I should not have to adjust my lifestyle to accommodate a diabetes device.

When I play basketball there is one place where I feel my pump is safe.  I wear it in a pouch on an elastic band that goes around my waist, and I position it specifically where I do because it is comfortable and safe. I got so many weak signal alarms during basketball that I had to use the “silence” feature I mentioned above.  Sometimes the pump would be less than 18-inches away from the transmitter and still couldn’t communicate.

It made me feel so fat.  Like I needed a satellite orbiting my stomach in order to relay information back and forth.

Final Thoughts & More to Come

I still have a lot more left to say on my trial.  This post is, by far, the most critical and complaint-filled section of my review as a whole.

It sounds like I hated the system.  Which I didn’t.  There were certain aspects of the system that gave me a lot of trouble, but overall, I still liked the system.  Stick with me, and I’ll cover those in detail in the next post or two.

Next post in this series: mySentry Trial: The mySentry Unit

Disclosure

I received all of the pump supplies, components, and training from Medtronic, free of charge.  I was not asked to write or say anything about my experience, I was not given any limits around anything I did write or say.  I did not receive any compensation other than the opportunity to try their products.

Motor Error – Me Too (Channeling Wil Dubois)

Evidence of a delicious cob of corn, and a motor error.

Motor Error

To be fair, this pump was snatched out of my hand last night when the infusion tubing snagged on a moving ceiling fan, was whipped around at high speed and thrown violently into the closet.  I would bet that nobody in the quality department at Medtronic envisioned that scenario…

Don’t ask.  It’s a ridiculous story involving my daughter teasing me for having insane armpit hair and my wife making me raise my arms into the air so she could see for herself.  I’ve already said too much, and I hope my friends still like me after reading this.

The impact onto the carpeted floor didn’t sound too bad, and the pump didn’t complain about anything when I asked it to run a self-test (a cool feature, even if just for peace of mind).

I didn’t have any crazy highs or lows last night or today, which might be a signal that something is wrong somewhere.  No sign of trouble until I bolused for my corn.

My first thought was, “no way… me too?” (in reference to Wil Dubois).  My second thought was, “how much insulin got delivered before the alarm?”

I called the helpline and they walked me through a test of the pump, which passed with flying colors.  They also asked me to reload the pump with a new reservoir and infusion set, which I did because I can see the logic of it (if there is something causing unusual pressure against the pushrod, it could cause a motor error).

They walked me through the pump history to help me see how much of my bolus was delivered before the alarm.  It was nice to be able to drill into the history to see the details of the bolus program and delivery.

I’ve been on this pump for just over a week now, and I’m busy gathering thoughts to share with you.  I had my CGM training this morning, so this is the first day with the sensor component.

It’s much too early to draw any real conclusions, but I’m working on a post (in my brain) where I’ll tell you how this CGM system makes me feel fat.

I also have a TON of other stuff to talk about (my 100-mile bike ride and the Lilly summit) and am hoping to get some of that out real soon too.

Sloppy Evenings, Low Blood Sugars, Guilt, and Fear

This has been an active week for me. It feels good. My body feels good.

Four days of basketball, with one seriously kick ass weight session afterward. Four days of tossing a football around with my son and shooting baskets with my daughter. One short bike ride back home after taking my old pickup truck to the repair shop.

As far as exercise, I’m doing it. And it feels good.

But I get sloppy in the evenings. High carb foods combined with estimated carb counts and ballpark boluses PLUS a lot of exercise and activity equals an evening full of lows that leave me feeling fat, guilty, foolish, frustrated, helpless, stupid, and scared.

The first low blood sugar I treat with glucose tabs. But because I’ve been so sloppy with my insulin dose, they are not enough to do the trick. So I have food.

But then I worry about having over-treated, and I’m sure I’ll be sky high later. So I toss a little more insulin into the mix. You know, to balance it all out.

My blood sugar never crawls above 96 mg/dl (5.3 mmol/L), but because I’ve got all of that insulin working, it’s not long before I’m low again. I’m full, and the last thing I want to do is eat more. But I’m low (again) too, so I eat. Glucose tabs, wait, regular soda, wait. Doritos then ice cream. That should do it. That is enough to fix all of the low blood sugars of the DOC combined!

As I come to my senses, I start thinking about the doritos and ice cream. Slow food. Fatty food. So I program some insulin to be slowly delivered over the next 4-5 hours to help curb the rebound high that is sure to happen. My CGM is all confused, reading just enough lower than my blood sugar to trigger the unchangeable 55 mg/dl (3.0 mmol/L) alert over and over again. Not wanting to be pestered by false low BG alerts as I try to fall asleep, I turn it off.

But I can’t sleep. I start thinking about my daughter lying next to me, and those that we’ve lost overnight, and start praying that tonight is not my night. That I wouldn’t want her to be the one to find me, cold and grey and gone.

What the fuck. Am I losing it? Something not right. Something nagging at me. God told me to check my blood sugar.

No rebound high. More low. Ironically, it is 55 mg/dl (3.0 mmol/L). Right where my CGM had me pegged before I shut if off.

I’m still full. I’m sleepy, but with a weird adrenaline edge to it. I’m jittery and exhausted.

I’ve packed in a fourth dinner and really don’t care how high my blood sugar will be when I wake up. My stomach is bloated enough to push doors open before I walk through them. I feel miserable.

My activity level and sloppy insulin dosing led to a world of trouble tonight, and I know better. There is a lot of guilt and frustration I’m dealing with, because I know better. But I need to let it go. It is not my fault. My pancreas is broken, and our very best attempt is still not as good as the real thing.

I need to try and remember that my activity level does not grant me a free pass to eat less responsibly. In fact, with diabetes, it probably requires MORE attention and precision, more thought and planning for the rest of the day and night.

If I would have simply done a better job of counting carbs for dinner, this spiral of crap would have been much less crappy.

Even though I’ve had all of this trouble tonight, I have every intention of exercising again tomorrow. I’m also going to try my best to be smarter about my actions after exercising. That’s where it all comes together. Even if I can’t get it perfect, it will surely be closer than I got tonight.

JDRF Government Day Whirlwind

Picture of Scott with Gary Hall Jr.The first session I went to was called “Government Relations 101”. Sounded perfect to me – as I had no clue what I was getting into. Kim and I sat next to each other and listened to a great, high level, presentation about the JDRF and Government Relations.

At some point during the talk, Gary Hall Jr. was mentioned.  Yeah, 10 time Olympic Medalist Gary Hall Jr.! Everyone looked over to the left, and there he was – sitting but a row in front and a couple seats over from us!

After the session was over, Kim and I went to chat with him.  He was so down to earth, and there advocating just like the rest of us.  He wasn’t big bad superstar Gary – he was just Gary, a guy with type 1 diabetes doing whatever he could to help make a difference.

Image of Scott's Dexcom CGM with crazy highs, and a sudden dropBy the time that session was over, it was around 5:00 PM on day 1.  I had only slept about tw0 or three hours before leaving Minneapolis, and the short sleep was really starting to mess with my blood sugars.  Even though I had been throwing bunches of insulin at my highs, they just wouldn’t budge.  Until all of a sudden they did, scared the crap out of me, then went back to being high again.

I have a theory about the lack of sleep and my blood sugars running high.  When I don’t get enough sleep, my body is stressed out trying to keep up with my activities – so it’s likely pumping out all kinds of stuff that make me more insulin resistant than normal.  That’s my story, and I’m sticking with it until I learn different.

The next morning started off way too early, again, but I was quickly drawn into the action.  We were in a huge ballroom lined with tables.  There must have been at least 150 of us in there.  Each and every person took a minute to stand up with a microphone and share their story about why they were there.  It was pretty damn moving.  Lots of laughs, and twice as many tears.

Later that afternoon was the blogger round table discussion.  There were two groups presenting, splitting the audience into two equal sized groups to make open discussion a bit easier.  I presented with Kelly Kunik, Kim Vlasnik, Kerri Sparling, and Cherise Shockley.  The other group was Scott Strange, Allison Blass, Mike Hoskins, and Kelly Rawlings.

They did a live broadcast of our group on UStream (recording below), allowing many more people to tune in.  With all of the questions, both from the people in attendance, and from people watching the broadcast, we could have used the entire afternoon.  It was too bad we couldn’t get to all of them.  I would also love to see a recording of the other group – rumor is that it was recorded and will be online soon.

Lorraine, Jeanne, Scott, Kerri - Type 1 Talk presentationAfter the roundtable session, Kerri and I were asked to help introduce a new tool the JDRF has made available.  Type 1 Talk is a brand new facebook app that allows you to connect with other people touched by type 1 diabetes who are nearby.  You can use this tool to see if there are any local groups nearby, or to organize a get together for coffee with like-minded people.  You’ll hear more about this soon, as I think the JDRF folks are pretty excited about it.

Aside from being introduced as “Steve” (it’s Ok Lorraine – I forgive you, but will not pass up an opportunity to poke fun in a blog post…), it was a pleasure to share the stage with Kerri again.

In the evening we had dinner and listened to a speech by Jeffrey Brewer, President & CEO of JDRF.  I had a front row seat, and was excited to get a feel for Mr. Brewer.  In short, I felt his initial presentation was a little too “canned” or scripted.  But I think if he would have slowed his delivery down just a little, it would have been fine.

He was much more relaxed in the Q&A section of the dinner, and that allowed his passion and personality to shine through.   He gets it.  He talked about his feeling that many of us adults have fallen away from the organization because we’re not being shown all of the good work the JDRF is doing en route to a cure.  We hear “cure, cure, cure”, but as we all know, there isn’t one yet.  So we feel as if there’s nothing happening, that it’s the same old messages over and over again, then we move on, sometimes with (in my opinion) hostility towards the JDRF.

Mr. Brewer wants to welcome willing adults with type 1 back into the fold.  He wants to do a better job of including us in things they are doing, and he wants to do a better job of sharing all of the great things the JDRF is doing as it is working towards a cure.

For example, did you know that the JDRF spent $10 Million dollars to fund a study on CGM use?  It was a study that might have been viewed as a common sense thing – of course CGM use should improve diabetes management, right? But there were no studies done to prove it, so insurance companies were not covering CGM devices as widely as many thought they should.  JDRF stepped up to the plate to fund this study, which provided data which was then used to push for better insurance coverage for CGM devices.  That was $10 Million dollars that nobody else would spend because it seemed like such a no-brainer!  Why fund a study that most would call common sense?  I thank the JDRF for the insurance coverage I have for my CGM sensors.  If they had not funded that study, who knows where we would be with CGM devices and insurance coverage.

Take that example a step further – do you know of any CGM systems that are labeled and approved for use by children? As far as I know, as of today, there are NONE approved for those under the age of 18. How dare we adults feel like the JDRF isn’t doing anything for us?

Later that night, five of us d-bloggers made history.  A live, sweatabetes workout session at 11:00 PM!  It was pretty awesome!  I taught everyone how to do a Turkish-GetUp.  Ginger would have been so proud!  After about 40 minutes of working out, many of our blood-sugars were dropping.  So we made a group decision to head downstairs and have ice-cream, where we met up with the rest of the slackers and made them feel really bad about not working out.

After ice cream, I was coerced into demonstrating a Turkish-GetUp for those that missed the live sweatabetes session.  So I did one.  Using a jar of glucose tabs instead of a weight.  On the floor of the bar.

I know, crazy right?  It’s all Ginger’s fault.

Next post about this? Dinner in D.C. – taking over Chevy’s, with pitchers of diet soooooodaaaaapop (imagine a thick Minnesotan accent…)

Chillingly Familiar Graphs

November 10, 2010 the FDA and NIH held a public workshop to discuss progress towards a semi-automated insulin delivery/ glucose monitoring system.  This workshop was “webcast” meaning anyone with internet access could watch and listen from their computer.

Screenshot from the FDA - NIH Public Workshop This workshop lasted all day, and I was only able to watch a few hours of it.  It was well worth the time to me, and I thought it was pretty cool to be able to get a glimpse of some of the dialogue from all sides.

There are many emotional hot spots around this project, and I’m ignoring all of them for the purpose of this particular post.  What I’d like to talk about is something that hit me hard while watching, and has stuck with me ever since.  It is also closely tied to my last post about those we’ve lost to diabetes.

I think I’d like to talk about this briefly, then stick the fear and sadness back in a box until something else cracks open the seal again.

During the presentation there was a section showing CGM graphs from those who died in their sleep.  It took only a second for my heart to stop and for a cold chill to run through me.  I couldn’t hear what the man was saying, I couldn’t read anything on the screen.

I was stuck looking at a graph I’ve seen a thousand times on my own CGM.

Picture of my Dexcom graph going dangerously low at night.

Of course it didn’t look exactly like mine, but it was close enough to register with me that any of these “cases” they were talking about could so easily be me or you or any of us.  What made me wake up, but these others not?  We were looking at CGM graphs, so they had the same tools I do.

That low I had was long, and at just after Midnight, and it looks like it took me a while to wake up and test.  Just like them.  Except they didn’t wake up.

I was talking to a friend of mine from the YMCA yesterday.  He’s a pastor at a local church here, and we were talking about prayer.  He asked me about my prayer life, and I shared that every single day I thank God for waking me up again.  I talked about the deaths that have been on my heart and mind lately, and how diabetes can sneak up and take us so quickly and quietly in our sleep.

He thought a bit, and to his credit was really trying to understand the layer of terror that diabetes wraps us in as we go to bed.  He tried to liken it to walking outside and being killed by a bus, or getting in a car accident due to someone else’s bad driving.

In the moment I thought that yes, that sort of fits, but it’s not quite the same.  It doesn’t carry the same weight for some reason.  But why?  A freak car accident is just as terrible as a nighttime low, maybe worse.  I don’t know.  I just can’t put my finger on why that analogy doesn’t sit well with me.

I think I should feel safe if I’ve made it through the day into my bed.  I’ve managed to avoid all of the hazards out there and am safe now.

But sometimes it’s the scariest thing in the world.

Beyond Fingersticks

Thirty years ago I was peeing on test strips to assess my diabetes management (a revolution for those who had to use a chemistry kit).  Within the next few years I was measuring my blood sugar instead of urine, and had machines that spit an actual number at me.  A relevant, actionable number as current as the two minutes it took to do the test.

It was still hard to manage any immediate changes, as the tools available were slow (Regular and NPH Insulin).  It was more about watching trends than making sliding scale adjustments.  Doesn’t the idea of making adjustments at night or first thing in the morning to combat a low or high the next day sound crazy?  But that was the reality of it.  Sort of like having to park a cruise ship at the cabin dock.

As faster insulins hit the shelves, and more sophisticated delivery tools were developed, I started doing more with those blood sugar numbers.  I could be a little more proactive, and make changes to my insulin dose that I would actually see in the next 2-3 hours.  It was a shift in the way I thought about the information I was getting from my blood sugar machine.

We’re ready for another shift.  With continuous glucose monitors maturing and a stronger push for insurance coverage, they will hopefully be commonplace soon.  But the amount of data they spew can be overwhelming.  We need to learn how to cope with so much information.  We need to look… Beyond Fingersticks.

I love Wil, and I’m a fan of all his writing.  It wouldn’t be a fair review if I didn’t disclose that I’m certainly biased here.  I can’t help it!  But now at least you know, right?

Wil quickly builds a house of CGM information.  Foundation, Floor, Walls, and Roof.   Those are, literally, the section titles.  Each section goes on to have chapters like “11. Daily Life“, “12. Travel with CGM“, and “13. Living with, and loving, CGM“.

The book is full of practical, daily-use knowledge, as well as higher level, more philosophical thoughts around this new technology we are using.

As one of the first 30 people in the world using CGM in the real world, Wil has learned more than anyone I know about living with CGM, using it to improve diabetes management, and preventing hypoglycemic unawareness from killing him (scary thought, right?).

What you now hold in your hands is the result of hard work, due diligence, and the artistic skills of a dedicated individual. (from the forward, by Howard Zisser, MD)

Besides all of the great information, I also loved the artwork and quote/phrase choices for each chapter.  They seemed so fitting!


The thing that sticks with me most from the book?  That our blood sugars are chaos.  They are living, moving, fluid, always changing.  Looking at them as a single number does us no good.  Learning to see them differently is one of the many things Wil does well in this book, quite possibly his best work yet.  Buy one, borrow one, steal one (check the library first though!).  If you have a CGM, or are thinking about a CGM, I highly recommend reading this.

The Effect Of My Miscalculation? Major Suckage and a Day Wasted.

The thoughts were nagging at me all morning.  What do I do about my blood sugar?  What adjustments should I make to my insulin?  How should I manage my meal bolus?

I was scheduled to meet up with some members of The Pancremaniacs this afternoon for our last team ride before the Tour de Cure (which is next Saturday).  I’ve done three of these team practice rides so far, and they have been great.  I’m so grateful to Auntly H for getting me back on my bike after so many years.

Exercise for those of us living with diabetes is a tricky monster.  It is so beneficial, but can be damn near impossible to get through without a LOT of trial and error.  With today being only my third time out with the group, I’m still trying to figure out the blood sugar part of things.  I’ve learned that my body, when my blood sugar cooperates, can push it pretty hard (relatively speaking) for around 20 miles.  It wipes me out, in a good way, cranks my metabolism, and supercharges my insulin for a long time.  Today was different.

As I watched my CGM for the first few hours of the day, I was pretty happy with a steady blood sugar in the mid 100’s.  I ate a very low carb lunch (no breakfast – shame on me…).  I was trying to keep from having a bunch of insulin in my system during the ride.  I also started a temporary basal rate, reducing my basal/background insulin, about two hours before we started.

Just before we started riding, my CGM buzzed at me, letting me know my blood sugar was rising.  Makes sense, lower your basal insulin, your blood sugar should go up.  In a perfect world, the exercise I would be doing would drop my blood sugar, and the scales of diabetes justice would balance out and I’d be fine.

A little more than halfway through the ride, I was struggling to keep up, and felt I was working WAY too hard.  We stopped for a BG check (it is SO nice riding with other PWD’s and T3’s), and I discovered that I was in the mid 300’s.  No wonder this ride was kicking my ass.  Muscles don’t work right when you are that high, and I was really sucking wind.  It’s like I couldn’t use the oxygen right with so much sugar clogging things up (I have no idea if that is how it works, but the visual seems to make sense, right?).  I took a partial correction and downed a bunch of water.

The last third of the ride felt like it took forever.  I couldn’t keep up with the group, and I was working so hard.  I hated it.  It felt like I was riding up a hill the whole way.  It sucked, big time.

We reached the end of the ride (FINALLY!), and I was so thankful.  For the rest of the day I felt exhausted and worn down.  It seems like exercising out of range is harder on the body.  That makes sense too I guess  – the fuel and energy systems in my body was all goofed up – of course it would have to take drastic measures just to make it through.

That afternoon of torture, and being wiped out for the rest of the day were all the result of a very small miscalculation (I reduced my temporary basal rate too much) early in the day.  I was totally spent.  The thought of doing anything productive for the rest of the day was just total nonsense.  I didn’t have it in me.

As I rested and recovered the rest of the day, I thought about how such a small thing could influence the way my day went for such a long time afterward.  I also have to watch out for post-exercise LOW blood sugars for most of tomorrow.

Is it any wonder why exercise is so hard for us?  There is so much more than the average obstacles of fighting our inner-lazy and finding time to do it.

Missing My CGM

When The meter read 298 mg/dl, my first thought was that I was probably 300 mg/dl all night. If I would have known about it I would have done something about it. Then I thought about what I did before bed last night, and what i messed up on, and how much harder my day would be. Waking up with a high blood sugar makes the “diabetes day” so much harder to influence.

My CGM broke about three weeks ago, and I’ve really missed it. Not only for times like last night, but also having a constant stream of useful information available at the touch of a button. I took for granted just how useful that information is. Now that I don’t have it, feel like I’m in the dark, and just guessing when it comes to decisions about food, insulin, and exercise.

Freestyle NavigatorThe CGM I had was the FreeStyle Navigator, and the company is having problems replacing stuff. They say they are not going out of business, that they will be replacing stuff, but don’t know when it will be available. And they offered $2000 for the return of the system.

I loved my Navigator. I didn’t want to send it back. But my choices were to either go an extended period of time without sensing, or cash in and buy one of the other CGM systems . What choice do I really have there?

My Dex will be here later this week.

I have been so surprised at just how vulnerable I have felt without a sensor on. I never thought it made much of a difference. Doing it “old school” (how ridiculous does that sound?) has been much harder, and my numbers are proof.
I’m testing a bunch, of course, but I’m missing a TON of information. I have to put a lot more energy into almost every decision I make, and I’m having problems putting individual blood sugar numbers into the context of my day and activities.

You wont meet anyone  wearing a CGM system that will tell you it is a magic bullet, and I agree with them 100%. But I sure do miss having that tool in my toolbox.