Why a CGM is Important to Me

I didn’t know I was low.

I was sleeping peacefully.

My Dexcom started alarming that I was low, but somehow in my brain I just knew it was wrong. I had no symptoms. No rapid heartbeat. No sweat. No confusion. No anything.

If I hadn’t had the Dexcom, I don’t know if I would have woken up.

I am a firm believer that a CGM system should be standard of care with any diabetic taking insulin. When I had tighter control, I had hypoglycemia unawareness, but now that I’m a bit more relaxed, I’m usually able to catch the lows in the 60’s. But not this time.

All it takes is one time.

One time to not feel it.

One time to not have symptoms.

One time to not wake up

I’m ok now, just dealing with the aftermath with a low-induced headache and feeling overall draggy today (both from the low and my daughter who is my little night owl / early bird). But times like this? Rock me to my core. It’s times like this that make me wonder and think of how insurance companies can deny, any diabetic on insulin who has been prescribed this device, access to it. It shouldn’t be their call. Something needs to be done.

CGMs shouldn’t be considered a luxury item – they should be as standard as a glucose meter itself.

Dexcom G5 – A Month Later

So, I’m finally getting to write some of my thoughts around the Dexcom G5 Mobile system. While I do see it as an upgrade to the G4, I don’t see it as a must-have.

Unlike when we went from the Seven+ to the G4, there wasn’t a huge hardware change other than the transmitter is now Bluetooth and can talk to a phone without the constant need of a receiver. However, notice I said “constant” need. There are times when the phone seems to not pick up signal very well for me, even when I’m holding my phone not even 2 feet away from the transmitter. Other times, it’s great at picking up signal. Mostly, I lose signal at night, so I keep my G5 receiver by my bed or in my bed with me. Otherwise, I will take it with me if we’re going on a long trip just so I know if my phone dies, I have a backup. I tend to stash it in my bra under my arm in the band so it has a comfy home. I’m used to storing my pump there when I wear a dress, so it’s no big deal to keep it there too.

On the side of whether or not the signal length is shorter or longer, technically, they both were rated to have signal for up to 20 feet – however, the G4 seemed to get much greater distance than that. I guess I got spoiled. Now it seems I have to almost always have my phone attached to my hand or butt (it stays in my back pocket mostly).

It is pretty nice to be able to have my Dexcom in my phone though when I have to make a quick trip somewhere – just grab the phone, ID and debit card and go.

And I like that when I calibrate on my phone, it carries over to the receiver when I get in range of it. No need to calibrate both devices, and both devices also show the same sensor glucose value. Now, with that being said, I wish that they synced missing data between the two when they were in range. So, if I’m out of range of my receiver for a while, it would fill in gaps from my phone.. and vice-versa.

I almost miss my G4 at times, simply because I don’t like having to use the Follow app to view the data on my Apple watch. I like that there is a separate app for the Share2 app. It seems they could make the Share2 app fill-in the gap like it used to do when the receiver was out of range and then brought back in range for the G4.

I ran both the G4 and the G5 side-by-side for a week as many were stating they felt they were getting better accuracy (Need a diabetes device guinea pig? Call me!). I even did myself. But, after watching it on both screens and calibrating with the same numbers, they were both relatively the same over time, so I don’t really feel one was more accurate than the other (unless you were going from the pediatric version of the G4, which did not have the 505 software, to the G5 which does – then, yes, I could see that being more accurate).

As far as the Clarity app, I still don’t like it. But, one thing I saw a lot of people having an issue with was the Estimated A1c and feeling that it could be off from their actual A1c. Two things come to mind with this – 1) they’re not really supposed to exactly match because what Clarity gives you is a rough estimate based on your sensor average… which leads me to…

2) (yes, I feel I need a separate paragraph for this one) Your estimated A1c and estimated sensor average are only going to be as accurate as your meter. I know, I know, a lot of people say that if the FDA approved it, it’s accurate enough. I call baloney. I’ve done my own testing of several meters on the market, as well as several other people, and I’ve read many different charts with statistics of different meters available, and I personally have chosen the Bayer Contour Next line of meters for my own peace of mind. Why? It’s not about testing them against each other with the same drop of blood for me, but how they test when ran two or three times back to back. If I have a meter that runs numbers of 136, 178 and 154 in succession, then I tend to raise an eyebrow. However, if I find one that runs 136, 131 and 138 in succession for three drops, it tends to make me feel more confident about the readings that meter is giving me when testing just one drop for a bolus. Out of all of the ones I’ve tried, the Contour Next brand worked better and had tighter deviations, so it’s what I’ve stuck with. But, as always, I’m not a medical doctor or medical scientist, so my own thoughts and testing are simply to appease me. Don’t take my word for it – if you’re curious, do your own testing and research.

And, back to Clarity and the A1c Estimation and the actual A1c correlation… here’s mine:

Clarity vs actual A1c

All in all, the G4 is still a good, solid, reliable product. The G5 is more a convenience system that gives you options. And options are good. 🙂

First Week With Dexcom G5 Mobile

G5 is here!After waiting 2.5 months, I finally received my upgrade transmitters for the Dexcom G5 Mobile system. To say that I was excited is an understatement. The thought of not having to carry around a receiver was pure bliss because honestly, I didn’t think I could lose my brain anymore than I did after my first kid and I was wrong – I literally could not find my nose if it weren’t attached. The balance of keeping order of all-things-diabetes in my life went out of the window, so I was leaving that receiver more places than ever. And if I kept it in my pocket, I would have that, phone and pump in various pockets and feel a bit tool-belt-ish.

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It’s true. Having my phone act as my receiver is liberating. I love only having to keep up with my phone. And my house is sort of small, so I can leave it in one central location most of the time and get signal most everywhere. But most of the time I have my phone with me for email, text, and baby-photo-op reasons, so that’s not an issue. The issue used to be that I was never near the receiver when the alarm sounded, and it would be at the most inconvenient of times, so it would get called all sorts of names and I would end up more frustrated than thankful most of the time. Now, it’s always with me since it’s built into the phone. Awesomeness.IMG_1169

The biggest thing I love about the app is now I can easily just tap in my BG calibration (NO SCROLLING – YAY!), and most of the time, I log my carbs and insulin now too. The app makes it easy to do, and seeing that blip helps. I also have used it to log my breast-pumping sessions so that I can figure out a better way to handle how it affects my BG by logging it as “light exercise”. I also like that the alert is shown with the actual BG number, not just “BG above ###”.

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I also love that my data is automatically stored into Dexcom Clarity, and accessing my report is as simple as opening the app, clicking a button, and viewing it. I can then email it to myself for in-depth review or just quick-glance over it when I have a couple of seconds free that I haven’t passed out from exhaustion.

Now, for the things that I don’t like or feel “meh” about:

The super private alert system. I think this is an area that should fall under “give us the ability and let us choose”. Personally, if I am being alerted of being high or low, I want to know what that alert number is WHEN I’m alerted, and not have to fumble with unlocking my phone first then opening the app. I want it to be an option that I can CHOOSE to turn on or off to see in that alert either “High Glucose Alert” or “High Glucose Alert – ###mg/dL”, and give us the option to open the app or dismiss the alert… which leads me to….

AW Alert

FOR HEAVEN’S SAKE PLEASE ALLOW US TO *ACTUALLY* DISMISS THE ALERT FROM WEARABLES OR EVEN THE LOCK SCREEN WITHOUT OPENING THE APP! This is my biggest pet peeve. If the above issue is solved where I choose to see my BG number and arrow within the alert, then also actually let me dismiss the alert when notified without having to open the app. I like the alert that comes up when you open the app, but it’s sort of pointless to me because I’m opening the app BECAUSE I’ve been notified, and I’m sure I’ll see the number once it’s open – no need to show a splash screen of sorts with it on there. I needed that BEFORE opening the app.

And along that same line – if I dismiss the alert from my watch, I shouldn’t still be notified every few minutes still from my phone. Especially since I’m required to have both the G5 mobile app and the Follow app to see it on my watch, and getting multiple alerts bugs the heck out of me. I get that the goal is to be sure to check the actual device for stale data, etc, but one would probably be keen to check if their BG remained static for hours on end. Heck, even instead of “dismiss”, let it be a “snooze” where you aren’t alerted seemingly every minute until you dismiss the actual alert. I would rather be able to “snooze” the alert for 10-20 minutes if needed rather than having that useless “Dismiss” option.

Follwing Friends

Overall, I like the Dexcom G5. I think it’s a big improvement, but I also think it’s a big step back. The jist of it is – let us *actually* dismiss from wearables, give us a separate app for those wearables for G5 (NOT the follow app for those of us who use it for ourselves and to follow others [which doesn’t sound creepy at alllll, right?]) (update: I hear there is a G5 mobile app for the Apple Watch in development, it just wasn’t ready when the G5 was approved by the FDA), and for all things mobile – LET US CHOOSE if our BG alert actually shows the BG or not.

I’m hoping to find a work-around until the G5 Mobile app comes to the Apple Watch since I have to use Follow currently. Possibly using only the alerts through the Follow app and turning off G5 Mobile alerts and simply using the G5 Mobile app as the loader? HHmm. I need some thought time on that one.

Check back later for an update! I’ll soon have my G5 receiver (I chose not to update my G4 one to use as a spare for the G4 transmitter), and I’m sure I’ll have some comments about that when I get it!

Coordinating Devices with PumpPeelz

One little thing I like to do is design graphics. I piddle with it, mostly, so it’s not a big thing, but it gets my creative juices flowing and takes my mind off of other things that may be stressing me out.

So, I wanted to make a design to get a custom PumpPeelz made so that my Dexcom and Medtronic pump matched and looked cute. Crazy, I know, but that little bit of color and art makes having the devices not so mundane. So, I set out to make a design using a blank canvas in Photoshop and some “brushes” (some of them are more like stamps, like the ones I used). I also used color inspiration from my niece’s favorite show, Strawberry Shortcake. My favorite character is Cherry Jam because, well, she sings and her colors are pink (like, fuchsia pink), a purpley-tinged pink, white and purple. This is where I LOVE Adobe Color because I can pull the exact colors from the photo and use them in my design work in Photoshop. (okay, okay, enough about my geekiness…)

Scott was able to take my image that I sent him:

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And with it, he was able to make my matching skins:

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I love them.  And the purple almost matches the color of the pump too. And, since I really don’t like the pink that the Medtronic pumps come in (someone likened it to a naked mole rat once, so now that’s all I see with it!! hahaha!), this gives me a perfect mix of purple AND pink… a pink that I like.

Is this post about diabetes? Not necessarily. But I do believe that things that make us happy and creative around diabetes helps us to do better and be more encouraged to take better control of ourselves. And if a silly pump skin or Dexcom skin helps do that and also gives me a means to display my artwork, then hey, it’s all good. 🙂

So go and get creative. If we have to use these things to help us be healthy, why not get creative with them? No use in being drab all of the time, I say. (Unless that’s your thing… if so, go for it.)

 

If you like this design too and would like to have one like it, feel free to email me and I can let Scott know that you would like to purchase one. I don’t charge for the designs, so it would be the cost of a custom designed skin from PumpPeelz.

Conflicted

I am one of MANY people who choose to use the Medtronic pump system with the the Dexcom CGM system. Since my endo took me off of my t:slim, the biggest thing I have been irritated by is how I cannot get all of my information into one report. I was finally SO happy to have that ability with Diasend for the t:slim and the Dexcom, and now I don’t. I know Medtronic has their own CGM system and I do have the 530G that will work with the Enlite sensors, but I had a bad run of luck (about 3 months worth) with it when I used it last year and I am hesitant to go down that path again, especially right now.

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Plus, now that Dexcom has Share built into the receiver, it has been SUCH a valuable tool for me and my family. I even contemplated using my old, out of warranty Animas Ping system so I could have all of my data in one place, but after one day of all of the irritating quick-scrolling and constantly missing my intended mark, I got irritated and used my Medtronic pump again. Not to mention, logging everything into the Medtronic through the Capture option so I could keep complete records was just irritating in itself (not that anyone else should have to do that, but I was just for my own sanity’s sake).

It really baffles me how Medtronic, being the big business that it is, and knowing that not everyone can wear their sensor, wouldn’t work with Dexcom to have a Dexcom version of their pump. Of course, I don’t know if maybe the feeling is mutual between companies and they just don’t want to be friends or what, but it would seem that if a company wanted to reach a HUGE customer base for their combination product, it would offer options that would fit almost everyone’s needs.

Anyway, that’s where I am right now. I have had a good experience over the past month and a half with my Medtronic pump and it’s made handling diabetes with pregnancy since switching a lot easier. I just wish I could have my reports all in one place, instead of two. It helps me make better decisions about my care. Sort of like what having access to Medtronic Pro reports would probably do too, but that’s another beef I have with them ( I mean, seriously?? Why can’t we have access to the more comprehensive stuff if our endo’s trust our judgement? And why have TWO systems anyway – other companies don’t [I don’t think, anyway].)

Bottom line is I know Dexcom works very well for me. I know that I like the Medtronic pump. I just want my world to be perfect and have the option of having those two combined.

*clicking my ruby slippers*

Until The End… At Least

Yesterday, I had my monthly appointment with my endocrinologist. I always look forward to my meetings with him – he’s always on top of everything to do with my diabetes, knows what a data nerd I am, and he fully trusts my decisions about my diabetes as much as I trust him to help me make decisions when I can’t.

He also knows that before my pregnancy, I switched pumps within my arsenal pretty regularly. He never had a problem with it. We even laughed about the amount of “backups” I have, even though all but one are out of warranty. When I received the second t:slim replacement in April of 2013 and started using it in January/February of 2014 after the cartridge recall and continued with it for a year until it was replaced earlier this month, he was impressed that I stayed with one that long. Last week, when I finally had enough of the craziness from my third replacement, he was willing to try to help because up until then, he (and I) was under the impression that I had found “the pump”.

So, when I went in yesterday, I told them about going to my Minimed once again (for documentation purposes), but this time I showed him the Dexcom reports between the two. He was floored just as much as I had been. Just as I had thought all along, he would expect to see that if I had switched insulin brands, not simply insulin pumps – because essentially they all should work relatively the same at delivering the set amounts of insulin. But the difference I had shown worried him. He told me not to use t:slim for the remainder of my pregnancy, and to stick to Medtronic. I had told him my husband and I discussed it and we had already planned to do that anyway, but hearing that from him validated it. And, in all honesty, it shocked me. He’s always been one to trust what decisions I make and go along with what I want to try, with the exception of ONCE telling me “no” to a medication I wanted to try, and this time I had the same reaction. He had stepped in and told me not to use a pump. Part of me is in shock, but partly not. It once again reassures me that he’s allows me to do what I want with my diabetes management, as long as it is within reason, and staying on a pump that would potentially cause harm would not be within reason, and he stepped in.

I will have add to all of this, though, that I did receive a call from Tandem at 10pm about replacing my t:slim once again. Since it is in warranty, that’s what I expect them to do. I went through all of the common questions they ask for record purposes, and the representative documented my answers. The replacement t:slim will be here next week, however both following doctors orders and for my own sanity, I will not be using it until the end of my pregnancy – or a bit later once insulin needs become somewhat predictable again. I’ll already lose some of my brain cells and energy to taking care of a newborn, and I won’t want to add switching pumps into the mix. He documented also that I wouldn’t be using the replacement until after August/September, so I wouldn’t be able to give feedback until then – and to my surprise, he didn’t try to pressure me into trying it any earlier. That made me feel very comfortable. I am glad that they reached out and were willing to replace the t:slim without hassle this time. I’ve only had a couple of sub-par experiences with their tech support, and the rest of the time it’s been good, so it does help to know that they are listening.

So, out of everything that’s happened this month, I am thankful to have an awesome Endo that I fully trust and that I know truly cares, and to know that Tandem does care – even at 10pm at night.

Happy 2015!!… with some bullet points.

HAPPY NEW YEAR!… 13 days late….

So, apparently I have a thing now for only blogging twice a month? Well, rather than overwhelm with a very long post, I’ll just use some bullet points to bring out the most important things.

  • Diabetes is being rather weird. Some days, it seems I’m very insulin resistant, others I’m super sensitive. I don’t know if it’s simply diabetes being itself, or if pregnancy has a hand in it, or if my thyroid being wildy off recently plays a roll. Or it could be all three.
  • Speaking of the thyroid thing… my TSH came back above 5 on New Year’s Eve, up from a usual 1.3-1.5’ish. Not sure of the reason other than being pregnant, as this happened when I was pregnant with E, but either way, my Synthroid has been upped yet again, and we’ll recheck in a few months.
  • I’m now 14 weeks, 2 days today. Baby bump is in blooming, and while I’m excited, it’s also freaking me out. The whole going from one to two kids… The further I go, the more freaked I get. I’m sure it’s just a thing I’ll get past soon as my emotions are EVERYWHERE. We’ve also decided to go for an early gender ultrasound, so we’ll (hopefully) know on the last Saturday of this month. I’m excited.
  • School started back this week, and it will be my last semester. I have 3 classes left, two of which I’m taking this 8 weeks. After that, it’s one more 8 week class and I’m dooooooooooooone! Yay!
  • Lately, I’m getting frustrated with my Dexcom being really off. I didn’t have this problem before the new 505 upgrade, but it’s been more and more inaccurate. And, after reading Stacey’s post, I’m beginning to wonder if I may need to change meters. After all, it’s not a secret to me that the Verio isn’t very consistent when tested back-to-back. So I’ve ordered a Contour Next USB meter, which is supposed to work with Diasend (though not the Medtronic Link version of this), so I’ll update as soon as I know something… or at least within two weeks of testing and finding out things for myself.
  • Oh, and the news of Tandem’s t:flex gaining FDA approval this week was also pretty awesome as well. It’s their larger pump, the only one that can hold 480u per cartridge (but knowing what I know about my t:slim, I wonder if you’ll only have 430u available for use per cartridge since I tend to average about 50u loss per changeout). I think it’s great as I do love my t:Slim pump and have had a pretty good relationship with it over the past year or so since getting the whole bad cartridge thing behind me. I still hate the insulin waste, but on a daily basis and for my needs now, it fits perfectly into my “diabetic” life, and I’m happy with it. I can only be that much more excited that others who have needed a much larger capacity pump (some type 2’s, teens with type 1, and some preggo people) will now have an option to help them be able to use a pump without having to change out so frequently.

So, that’s about it. Not much going on, but a lot at the same time. I hope you all are doing well and are enjoying your January.

Diasend Plus Tandem : YES!

I received an email from Tandem’s marketing associate this morning regarding Tandem’s new partnership with Diasend. As of now, professionals with Diasend Clinical can upload your t:slim into their Diasend database along with your Dexcom (if you have one) and your meter (if it’s one of MANY listed) and have all of your data in one, nice, neat place.

But is it for professionals only?

Well, my tech-oriented mind didn’t want to just assume it was for Clinical people only and tried Diasend personal. I still had an account from when I was on the Animas Ping. I updated the uploader and waited.

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Nothing happened.

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I kept trying and trying, but it just wouldn’t work.

But did I let that stop me?

Nope.

I went in to my current account and deleted the current devices I had connected… then ended up deleting the whole account anyway. I wasn’t sure if the reason why it wasn’t uploading before was because maybe it was an older system or one that was sponsored by Animas. So, I just thought it would be best to start over from scratch.

So, new account was created, and fingers were crossed, breath was held, and eyes were glued to my screen as I tried to upload once again. Even though I had already gone in and entered my serial numbers in, I still had to enter my username and password during the upload to link the account and devices together.

BUT!

In the end, it all worked!!!

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And I now have Dexcom and t:slim data all in one, happy place.

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I am BEYOND thrilled!!

Now, excuse me while I dance!

So, This CGM Cloud Thing…. #wearenotwaiting

IS PRETTY DARN AWESOME!

If you don’t have any idea of what I’m talking about, let me sort of give you a little run-down. There’s this group that I found on Facebook a couple of months ago after seeing a parent’s photo of a Pebble watch with their child’s Dexcom CGM data on it and they linked to the group in their reply. It was all comprised of an Android phone, Dexcom, a few cables, and some web programming. It was pretty awesome and intriguing to see how these parents were able to get this system set up so that they could monitor their kid’s sugars from a far – whether they were at work and the kid was at school, or even while the kid was at summer camp. It’s been an exciting thing to see happen and to also see the parent’s joy when they finally get their own “rig” set up. Of course, I wouldn’t be able to give you a better job than Kerri did of interviewing the creators, so you can hop over here (part 1) and here (part 2) for her posts about these wonderfully awesome guys.

image (4)Then I got to thinking. Okay, I really want to do this… but what is my justification other than I’m a glutton for anything diabetes tech related. I was green with envy and wanted it too, but for what reason? I couldn’t justify in my head spending a lot of money on a setup that I don’t need 24/7 like these parents do. I’m the one who takes care of my diabetes, so I really didn’t think it was necesssary, but I reeeeaaally wanted to see if I could get it to work. Then it hit me…. all I needed to buy was the cable to connect my Dexcom to the Nexus tablet I had… if the Nexus tablet would be compatible with the system (it has to be an Android device, and it has to be OTG compatible).  After reading into everything, I realized that this would be a bit over my head to learn quickly ( I admit, I’m a slow learner ), and since I’m married to a tech genius (well, he may not technically be a genius, but he is to me) I figured I’d let him tackle it for a project. He had it up and running within a couple of hours.

Now, for the real question… does this really have any value to those of us who are the people with diabetes? The ones who are adults? My answer? YES. And here’s why:

  • If you’re someone living alone and having issues with your sugars and want someone – a parent, best friend, etc – to help you keep an eye on your sugars for a while, it helps them be aware a bit more easily than asking you every 5 minutes how you feel or calling every hour or so.image (5)
  • If you’re married, and just say your spouse (or you) travels a lot, it’s cool to be able to have way they can set up their phone and open the webpage where your CGM Cloud is, set the screen to never go off, and turn the sound on. Then they have a CGM alarm at night as well as you so that way both of you can still keep an eye on your sugars while they (or you) are out of town.
  • And (the most valuable one to me) at work, I can keep the setup in a drawer or in my purse and just have a separate window open to my CGM cloud site and if I’m with a client, I can discreetly just click the tab, check to be sure everything’s okay, and click back to what I was working on. No need to fish out the receiver and look as if I’m inappropriately checking a text message or changing a song on my iPod (to which I’m not wearing any earbuds to).

Currently, I only have my setup available to use over WIFI. I really don’t have a need to have it going on a cellular data plan to upload all of the time, so I’m okay to unplug it every now and then. Though, when I do, I have a widget on the sidebar that you’ll be able to see what I see as well.

The CGM in the Cloud is pretty awesome, and I’m so glad these guys have worked so very hard to bring us this wonderful setup. I know it has helped to ease a lot of parents’ minds, as well as my husband’s and my own.