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.
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.
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.
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 ###”.
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….
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.
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!
Three weeks ago, I began what I thought would be just a break from my Minimed pump / CGM combo. I was constantly getting frustrated with CGM sensors not lasting the full 6 days (usually only about 4 days) and knowing that my records were going to be all messed up. I have to hand it to Medtronic though, they stuck it out with me the entire time and without hassle replaced boxes of sensors and even my serter. But with all of the trying and trying and trying, I just couldn’t get them to work. So, I wanted to take a break. Being overwhelmed with that and just everything else, I just didn’t feel like I could troubleshoot anymore. Now, I’m not saying their product isn’t good, because I know a LOT of people who use it and have had a lot of success too, but I’ve learned one thing – there is a lot of truth in the fact that not every device “fits” everyone, and no, they don’t all work the same. Thus, my theory that everyone should get to “date” pump systems before locking in needs to be a must. And I don’t mean just over the weekend. I mean like, for a whole month or two. I just think with all the scar tissue I have and the sensitivity to the tape the Enlite has, it’s just not worth trying to make it work right now. So yes, in essence, it’s me, not them.
When I got frustrated, I switched back to using my Dexcom. Granted, it’s a pain in the butt to keep up with, but for me? The accuracy over the duration of wear time is much better. It wasn’t until everything happened with my eye that I realized just how important it was. I’m not saying it is super accurate, but I’ve been able to depend on it more than the pump CGM, and right now that matters a heck of a lot more than whether it’s integrated or not. Plus, I have no tape rashes or burns from the Dexcom, so that’s a huge plus for me.
Also, at the time, I had a fling. No, not that kind of fling… a pump fling. Knowing how I am about wanting to switch up pumps between the Medtronic and my t:slim, I had actually planned on going through maybe two cartridges in my t:slim pump at the end of March. I don’t know if the battery works the same as most computer batteries, but with those, if you don’t use them, the batteries mess up, so every now and then I wanted to be able to use it so that just the lack of use didn’t mess up the battery. So, when the eye thing happened, I was on the t:slim. I was not having any issue at all with the pump like I had before, so I am not attributing what happened to that, but I am telling you that because when I spoke with my endo, he told me to “keep everything to the same” until I went for my appointment… which will be next week. So, for 3 weeks now, I’ve been using my t:slim pump. Much longer than I expected, but I have to say, I haven’t had the issues with random, uncontrollable highs that I did before. In fact, it’s been quite the opposite. My control has improved. I still wonder if the cartridges I had were affected by the recall, but that the lot numbers were too “young” to be considered in it (my lot numbers were in the 300’s, the recalls started in the 800’s). I’m not going to lie, I’m sort of hopeful that maybe that was the case and now the pump will work just fine.
And, as an update to the whole eyething, I have good days and bad ones. For the most part, if I can keep my blood sugar as steady as possible and without any major swings (like, no arrows on the dex, and no BG’s above 180-200 for a period of time), my vision is pretty well clear. But if I have a period of time were my BG has run high for a while or if I have major swings (like when I went from 220’s to 70’s within an hour and a half), my eye is pretty well good for nothing for a while. It’s amazing me how things work and affect us all. If anything, this has taught me, as I said before, it’s not about what you use to control your diabetes, as long as you’re using it the best you can and doing the best you can.
Anyway, that’s sort of a rundown of what’s been going on. I know it’s probably confusing when I just throw stuff out there at random without any true point or purpose other than to just get stuff out of my head, but that’s sorta what I started blogging for anyway.
Last week, I had a phone conversation with Dana, the Executive Director of my local JDRF chapter and while on the phone, she invited me to attend the upcoming JDRF research update meeting they were having. Granted, for me to go was a two hour drive. I’m not good at driving distances… let alone in what I consider “big cities”. I made it there… 20 minutes late due to just trying find parking when I thought I was going to be 20 minutes early. Take note: this girl is a pure country girl. I had not planned on all of the extra time just being in a bigger city requires to get 2 miles down the road. But, alas, I made it. And I’m glad I did.
The presenter for the night was Doug Lowenstein, a member of the JDRF International Board of Directors. He was there to give us an update to what the JDRF is doing and how research is progressing toward not only finding a cure and preventing it from even happening, but also making devices and therapies that are less invasive, less complex, and less demanding on us,
“because we know, we know we are going to find find a cure, but know in all honesty has to compell us to tell you that it’s not tomorrow, it’s not probably not in 5 years, it’s probably not in 10 years, so we we’ve got to keep people healthy… we gotta keep people healthy so when that cure comes, they’re not so beaten down by the complications of this disease that they can’t reall enjoy the experience of having that cure.”
Over the course of the presentation, he covered the five areas that JDRF is funding to make things move forward: Artificial Pancreas Systems, Beta Cell Encapsulation, Smart Insulin, Beta Cell Restoration, and Prevention. Right now, I’m only going to touch on the first two because, honestly, even though those two things covered about a third of his speech, they were the most interesting to me.
He spoke about Artificial Pancreas systems, to which he started the topic by saying, “This stuff isn’t just cool… it’s BETTER than cool“. A man after my own heart, I tell ya. Nothing gets me more excited than to hear about different devices that are being developed that are going to help us to live healthier, fuller. He spoke about the already available Medtronic 530G and the Low Glucose Threshold Suspend feature that it has, but he also mentioned and spoke more about the one that is in the works for the next update for Medtronic – the one with Predictive Alert Low Glucose Suspend, where the pump will respond to, not a threshold, but rather on the predictive alert that the patient is going low. Having already experienced first-hand how the 530G works with Threshold Suspend, saying that I’m intrigued and excited doesn’t begin to tell how I felt when he told about that one. He also touched on the other systems that are being developed by other companies that will handle diabetes in different ways. Ones that are either Treat to Range (where the system will regulate your glucose to stay within a specified range, say 80-180 or 80-160) or Treat to Target (where the system will be a bit more specific in that it will treat to your specific target, say 100 or 120). The goal? To have fully automatic multihormonal systems (since, you know, we don’t only not produce insulin anymore, but we also don’t produce amylin, and we need a bit of help from glucagon sometimes too).
Next, he spoke of Beta Cell Encapsulation. Now, one thing I know is that the DRI has been working on their own version of this biotechnology. But did you know there are also two other companies working on this as well? The company he spoke specificaly about is ViaCyte (click on the word and it will take you to the JDRF’s press release). In his words, it’s “almost science-fiction”. They take beta cells, put them in a capsule (about the size of a silver dollar, or quarter) – VERY thin, using cell-sourcing technology, place them in there. And we’re talking thousands and thousands of beta cells. The device is a semi-permeable capsule (allowing blood, nutrients, etc, in so that insulin can be produced) – but yet it’s protected from the autoimmune attack. Their first human trial, even though it’s in the very early stages, is expected to be later this year. If this works and succeeds, it will lasts 18-24 months “literally, without thinking of diabetes for 18-24 months.. not once”. Not surprisingly, it’s been tested in mice and has worked successfully for 15 months (which is actually about the entire lifespan of the mouse.. so they haven’t been able to test longer than that). Granted, we all know, mice get the best of everything.. sort of makes me want to be a mouse….but knowing it’s going to human trials has me excited too.
Now, some may think like I did for a long time.. sure.. these things are in the works and they’re getting funding for it, but they’ve funded things before for years and I don’t see where they’re making progress. And I’ve had to eat those words. Little did I know, the JDRF is what has been the key to getting CGMs covered by most insurances.
“The fact that CGMs are covered at all : again, entirely because of JDRF. Because that technology was out there, and insurance companies were not covering it. And so we went out and funded trials, all around the country.. 12 or 14 trial centers. The express and sole purpose was to prove to the health insurance industry that CGMs resulted in better outcomes for people with T1D, ergo, lower cost for insurance companies. That data is the foundation for why insurance companies cover CGMs at all. It’s not where it needs to be… but we’re a lot better off because of that.”
There are many things that the JDRF has it’s hands in all in the name of creating a better life for those with Type 1 Diabetes, and after going to this update, I was able to see and hear the things they are working on trying to get funding for to help us… to help me… to help those who have been diagnosed… and those who WILL be diagnosed. As excited as I am, it’s heartbreaking to still know that we are still even 10, 15, or more years away from technology alone that can help us… so no, a cure more than likely will not be here in 10 years. But to get to where they want to be… where I want to be even in 10 years… even 5, they need the funding. They need us to share our stories with our senators and congressmen so that they will continually sign those letters in favor of renewing the Special Diabetes Program. Last year, 270 members of the House of Representatives and 73 senators signed those letters and the SDP was renewed… but only for one year. That time to renew is fast approaching.
Yes, all of these advancements and treatments that they are working on is way better than cool, but it won’t be cool if the reason we don’t get them is due to the lack of funding. We can do this. Please PLEASE take 5 minutes out of your time to go to the JDRF Action page and sign your own letter to your own congressmen know just how important this is to you.
I’m irritated and frustrated. My overnight BGs are horrible, and I’m sure it’s going to make my A1c crap. But I cannot for the life of me figure out why they are so high. I’ve adjusted basals, tried to eliminate lows before bed that could be making rebound highs… I just don’t get it. 🙁 I’m envious of other people’s graphs that seemingly have excellent overnight lines and wonder to myself how do they do it?
I’m still working on it. Trying to figure out an answer before my endo appt on Monday…. Which is totally bass-aackward from how it’s supposed to be, right?
Feeling defeated. Feeling irritated. Feeling tired. Can I go back to bed now?
(Second post of the day, I know, but I wanted to blog this in hopes to get some tips on how to boost my testing. What helps you remember to test?)
I absolutely love my G4 CGM system. The increased range is awesome (read: I have left the receiver in my car and forgot about it at night and ran back out to get it and it still had received my readings!) and the ability to wear the sensors has improved from an average 2 weeks for me to an average of about 24 days. And when you’re on a budget and knowing these sensors cost you about $75 each, you wanna make them last as long as possible. I can stomach an average of $3 per day verses $10. BUT, overall, the accuracy has been awesome for me. I know for some, it hasn’t, but with all things diabetes and bionic parts related, YDMV (Your Diabetes May Vary).
But looking over my meter, I think I’m trusting it a bit too much:
It seems that I have taken a mental note as to how close my Dexcom matches my readings and have trusted it a bit too much. I’m barely making the 4x/day quota that I’m even supposed to check. I take for granted that the CGM is just a guide that it can can go awry and really be off.
I need to get back into the habit of checking again. Before and after meals. Just to have record of them, and to be sure my CGM is right. It’s sort of like the Double-check promise that some company had years ago that was to ensure that your order was right. I need to instill my own “double-check” promise.
I wish my meter would tweet it for me, so every time I checked, you guys could see and it would help hold me accountable. One can wish, right?
First, let me say that Medtronic has a good insulin pump. The features that it offers – bg-check reminders, missed bolus alerts, an optional CGM component, ability to see almost anything you’d want to see from any menu you have available in regards to basal, bolus, average bg, insulin on board, etc – are great. It’s also a very durable pump as I have knocked, dropped, and sat on the darn thing on not so soft of surfaces and it has held up. I have put it through the ringer, I promise, and it has proved to be a very durable, reliable insulin pump. My only complaints that I can find about it are 1) it’s only water resistant, not waterproof, and 2) there is no remote-bolus option – two things that are very important to me, but can be worked around.
The ease of ordering supplies either by phone or ON my phone via the myMedtronic app has been great. I’ve also had the pleasure of calling the reorder department about an order that I already had received but needed to change the set and they were able to do that. I don’t believe I have encountered any other company that works so extremely well with customers and getting the supplies they need.
Oh, and their customer service line? One word: Awesome. I never ever had an issue with them. I’ve worked with other companies that, when I encountered an issue, the problem would be placed back on what I had done or was made out that their product was perfect as is and it was obviously my problem (drip that with sarcasm). Granted, I have spoken with customer support before about my calibration issues with the CGM portion, and that is still something I cannot figure out why I can’t get right on a consistent enough basis, but they put up with me through it, making as many suggestions as possible, and even following up on my complaint later.
Which leads to my point of this post….
While I believe that Medtronic is a good company who has excellent customer service and a good insulin pump product, I personally do not choose to use the pump as a pump+CGM combo any longer. The issues of the CGM that I was beginning to have led to more frustration than I wanted to have.
Since the end of June, I started becoming more and more dissatisfied with the CGM and the requirements of calibrations for it. I tried everything and made a full honest effort to stick to the rules, but it just wasn’t working out for me. Granted, I absolutely LOVED that it is integrated into the pump. That part is absofreakinlutely the most awesome thing ever to have both a pump and CGM in one and not have to worry about an extra device to keep up with. Accuracy wasn’t too bad at all either as long as you calibrated as required. Most of the time, I’d say, probably about 80-90% of the time, it was almost spot-on or within the allowed 20% deviation range. The only time I had issues were when I either hit a bad bleeder, the sensor wasn’t all the way in, or if the area chosen was just not a good placement. I had a pretty good system of being able to insert it manually and cover it with tape in a way that prevented most of those problems, but sometimes it still happened.
After speaking with Erik over the past few weeks and with my endocrinologist, we have made the decision to switch back to the Dexcom. This was not an easy decision to make as I hemed and hawed, thought and thought, even made a spreadsheet to help me reasonably make a choice that would be the best for me and what I needed. The only reasons are that it seems to work better at following my low or high swings, the pain of insertion is not nearly as bad, and the sensor lasts 7 days. Granted, it’s a pain in the butt having an extra device to carry around as I’ve already left it at home a couple of times on lunch break, but I don’t mind it being separate over all. I also don’t like that I have to avoid Tylenol again, which was one of the biggest factors of the Minimed CGM that I loved other than integration– no Tylenol restriction!
This has not been an easy post to write. As a matter of fact, it has been in my draft que for days and gone through several revisions because even though I made the switch over to Dexcom, that does not mean that I believe any less in Medtronic’s products. I contemplated not saying anything at all, but I also know that as a blogger, I believe in honesty and disclosure to my readers. Things that I have blogged about in the past in reference to how I may or may not have liked the Revel system as a whole still are true, but reflect my feelings as of the date of the posting. Things change. People change. Our needs change. And the change from the Minimed CGM to the Dexcom is just one of those changes for me.
I haven’t totally given up on the Minimed CGM though. I still have supplies for it and if I want to hook it back up, I can. But I feel that right now, I have to do what’s best for me and my diabetes treatment and, most of all, my sanity. And who knows? Next year, hopefully when the Enlite sensor is out, I can try it out and I may switch back. Just depends on how it compares and how it works for me.
The past year, as mentioned in my Disclosure, I have been a blogger for Medtronic on their site, The Loop Blog. Working with Karrie, Amanda and the Medtronic team has been enjoyable as well as a learning experience. I am so grateful to have had that opportunity. The contract has ended, but I hope that the friendship can still remain. A few posts that have been submitted for review may appear later on their site (which is up to their discretion), and do reflect my view of the topic honestly at the time of the writing.
So it comes as no surprise that I was irritated yesterday. (Naaa, really, Sarah?? Never woulda thunkit! /sarcasm). I think the stress of finals this week in combination with the icky, sticky, messy heat, my allergies or pending massive summer cold, and the fact that I had gone through two sensors in two days for various reasons (and ended up having to pull yet another one last night too…strange gusher issue) had me to my breaking point and the second sensor pull had tipped the cap to my irritability.
But, on the advice of my new good friend, Scott E (yes, we have a LOT of Scotts in the DOC) as well as Stacey D, I have disconnected the CGM part of my pump for now. I don’t quite understand what happened last night, but I checked my site to be sure everything was a-okay (habit – a good one to have, mind you), and the air space inside of my tape all around my CGM site was filled with blood. Keep in mind, this was already a day old, so any bleeding should have happened within a few minutes of insertion, or so I always thought. I pulled the site and just kept it out.
I may stay on a break for a week or so…. or at least until after this week is over. I’m to the limit stress-wise with these finals, my baby’s upcoming BIRTHDAY party (Geez! Already!!????!???), and a few other things going on personally. I’m just worried that with my OCD-dBrain, I won’t be able to stand it and will have to reconnect to see the numbers.
I’m probably taking a risk here, but I need to vent.
I think my body hates me. My bg’s are all over the place – mainly due to stress and eating wildly (I tend to eat when I’m stressed, and lately I’ve been VERY stressed), I’m sure.
But most of all, my sites are being a royal pain – in – my – tushie. I’ve tried the different sets. The only one that works consistently is the Sure-T needle ones. I hate that I can’t use the cool colorful ones anymore because my body somehow manages to kink them within a day.
My CGM sites? HA! I’m so mad right now I could scream. I follow my calibration times and rules. Yet, some last 3 days, one even lasted me 8 days recently, and others only last a day. TOTALLY irritating when you lose a whole entire day of inaccurate data that will be factored into your average that the doctor sees. I thought there was a correlation between where the sensor was placed and the accuracy… nope. Maybe between consistent calibration times? Better, but not really. Outside effects on the sensor? I can cover it and not let a wick of outside moisture hit the darn thing and it can still mess up, so no, that can’t be considered in it either. Not to mention they HURT like the dickens now too. I swear I’ve become more sensitive to them all of a sudden. What’s most aggrivating is that it seems that I have to follow just as much of a schedule to calibrate as when I was on shots for taking them. And isn’t that a major part of pumping? To be able to have lax schedules that fit your life?
Maybe I’m just going through a mental PMS and I need to just suck it up.
Of course, it’s probably because my bg is high right now too and it’s one of those that make me mad at anything.
But it’s good to vent, right?
I think it’s time for me to sit down and write out all of pros and cons to my current diabetes management system. Maybe I just need a break from d-technology for a while. I just don’t like the idea of it for fear that I will give up completely. Advice?
(Sorry for not posting any this week. I had a problem with my site and some hackers and stuff, so I was working hard with my hosting company to get it back to working order. Now, on to my post…..)
Welcome to this week’s Friday Find! Several weeks ago, I was wanting to have an app that would track my sites – CGM and Infusion. Well, actually, this has been a dream for a few years now, but I actually started proactively looking for a way to make it happen. Well, unbeknownst to me, a good friend of mine – Brian Bosh (@Bosh) also had the same idea, but actually had the means and know-how to do it. He had developed an app called Site Selector. It was still in infancy stage, but I was so thrilled to see it and use it! I reached out to Brian with some suggestions of some improvements, and he worked hard on incorporating them. And now, I want to share a bit about it with you.
1. The app is FREE! Yup, FREE! Always a great point to make, right?
2. You can track both CGM and Infusion sites by long-tapping on the “body”, which will then place the site, or short-tap to zoom in on the area, and you can long-tap to mark the spot. A menu will then come up to ask if it’s a pump or CGM site, and then it places a dot for the site. Purple for pump, orange for CGM. It’s then recorded in the app and kept track of.
3. When you initially set up the app, it suggests healing rate times for sites, but as we all know, YDMV (You Diabetes May Vary), and some heal slower than others. You can change this to how fast or slow you think you heal. In doing this, it makes the app know how fast to “fade” the dots where your sites are to represent where they are in the healing process.
4. It not only logs your sites, but you can also log your blood sugars in the Logbook section which can then be exported, but only if connected to your computer. But Brian gives excellent instructions on how to do this, and it works quite well.
5. With the reminders set, it alerts you as to when your current site has expired and needs to be changed:
As with anything diabetes-care related, you have to do what works for you. This app works for me because it can be as simple (only track CGM and infusion sites) or as complicated (those plus BG’s) as I need it to be. I absolutely love that Brian make it because I am a visual person, and being able to see where a site might be a no-no due to healing is a great help.
So, what are you waiting for? If you have the iPad or iPhone, go download it and give it a try! And, if you can, rate it for Brian so he knows how he’s doing. Or, if you have any suggestions, contact him atÂ siteselector (at) alternateinterior (dot) com.