Entering the world of continuous glucose monitoring
I never thought I'd be able to use a continuous glucose monitor (CGM). Never. In Australia, CGMs are not yet subsidised by the government or covered on Private Health Insurance. This kept vital technology out of my reach because frankly, I had no chance in hell of affording it.
That changed when my 21st and Christmas rolled around and I asked for CGM funding from my family as a gift. I was tired of spending every waking moment stressing more and more about what my sugars were doing. I ran through test strips like water on some days. When I was given the opportunity for a trial I went for it and despite problems with the device, when it worked I experienced this incredible peace. My brain just shut the hell up. 6 years of constant thinking and analysing and worrying just stopped because I had a device that would alarm at me if I was at risk of going low. It can alarm on highs too but I'm not as fussed on that. Lows have always been my fear.
Thanks to my family funding half of it I decided to sign up for a 12 month subscription. I was excited, but also a little conflicted about it. I worried whether it would work well, the trials had issues after all. I worried about having something else on my body as well as the pump. How would I sleep comfortably? Would it hurt to inject? Would it make my diabetes more visible? Did I feel okay about that?
Plus I felt a little bit of guilt. Silly, maybe. But I have been, and still am, so passionate about equal access to healthcare and health related technology. I felt like a sell out in a way, because I was now accessing the best of the best when it's just not an option for a lot of people. For me the solution is to remain actively involved in raising awareness of the benefits of CGM and lobbying for equal access.
On to the device itself!
I hated the thing on the first 2 days I had it. I wanted to throw it off a very high cliff. That did not help the guilt complex which expanded to "oh my god what a waste of SO much money". It read dead wrong, bled, and died on day 1. I was horrified. Another sensor kept reading as "below 2.2" when my sugar was 10. Turned out that one had retracted or not been built with the actual sensor bit that sits under the skin. So it was measuring nothing and had to be removed.
But things turned around.
One amazing thing about Medtronic is their customer service. Any issues and they replace it. No fee for the phone call, no fee for the item, no fee for the delivery. If their product is faulty they will replace it. I've had 2 sensors fail out of 5 and they have replaced both (which have worked). For me it was a placement issue. For some reason my stomach just will not cooperate with the sensors. It bleeds instead of sitting in the interstitial fluid. Now I know that I have to place it on my hip and lower back for it to work and voila- magic.
This CGM has stopped MANY overnight lows. Overnight lows I wasn't going to wake up to. My liver normally dealt with them in the past by giving out glucose, but you just can't rely on that. Now I've been able to change my insulin rates to avoid that. I've been able to go on holidays where I do long walks. It's even made my eating easier. I don't have the greatest relationship with food and forget to eat a lot. I consider it fuel, and would eat to avoid hypos. I'd use insulin stacking (taking insulin within 2 hrs of your last bolus) and high sugars as excuses not to eat.
Now? The CGM shows me where my sugar is trending, and I eat anyway. In the future I'll start again with tighter sugar control, but right now the focus is on increasing my intake and if the CGM lets me do that, then that's awesome.
I can sleep, I can eat and I can actually enjoy exercise instead of waiting for the bad hypo to follow. Yes, it's not perfect. But it's relatively painless, doesn't get in my way and has improved my quality of life so much. Which if anything, makes me want to fight even harder for equal access.
That changed when my 21st and Christmas rolled around and I asked for CGM funding from my family as a gift. I was tired of spending every waking moment stressing more and more about what my sugars were doing. I ran through test strips like water on some days. When I was given the opportunity for a trial I went for it and despite problems with the device, when it worked I experienced this incredible peace. My brain just shut the hell up. 6 years of constant thinking and analysing and worrying just stopped because I had a device that would alarm at me if I was at risk of going low. It can alarm on highs too but I'm not as fussed on that. Lows have always been my fear.
Thanks to my family funding half of it I decided to sign up for a 12 month subscription. I was excited, but also a little conflicted about it. I worried whether it would work well, the trials had issues after all. I worried about having something else on my body as well as the pump. How would I sleep comfortably? Would it hurt to inject? Would it make my diabetes more visible? Did I feel okay about that?
Plus I felt a little bit of guilt. Silly, maybe. But I have been, and still am, so passionate about equal access to healthcare and health related technology. I felt like a sell out in a way, because I was now accessing the best of the best when it's just not an option for a lot of people. For me the solution is to remain actively involved in raising awareness of the benefits of CGM and lobbying for equal access.
On to the device itself!
I hated the thing on the first 2 days I had it. I wanted to throw it off a very high cliff. That did not help the guilt complex which expanded to "oh my god what a waste of SO much money". It read dead wrong, bled, and died on day 1. I was horrified. Another sensor kept reading as "below 2.2" when my sugar was 10. Turned out that one had retracted or not been built with the actual sensor bit that sits under the skin. So it was measuring nothing and had to be removed.
But things turned around.
One amazing thing about Medtronic is their customer service. Any issues and they replace it. No fee for the phone call, no fee for the item, no fee for the delivery. If their product is faulty they will replace it. I've had 2 sensors fail out of 5 and they have replaced both (which have worked). For me it was a placement issue. For some reason my stomach just will not cooperate with the sensors. It bleeds instead of sitting in the interstitial fluid. Now I know that I have to place it on my hip and lower back for it to work and voila- magic.
This CGM has stopped MANY overnight lows. Overnight lows I wasn't going to wake up to. My liver normally dealt with them in the past by giving out glucose, but you just can't rely on that. Now I've been able to change my insulin rates to avoid that. I've been able to go on holidays where I do long walks. It's even made my eating easier. I don't have the greatest relationship with food and forget to eat a lot. I consider it fuel, and would eat to avoid hypos. I'd use insulin stacking (taking insulin within 2 hrs of your last bolus) and high sugars as excuses not to eat.
Now? The CGM shows me where my sugar is trending, and I eat anyway. In the future I'll start again with tighter sugar control, but right now the focus is on increasing my intake and if the CGM lets me do that, then that's awesome.
I can sleep, I can eat and I can actually enjoy exercise instead of waiting for the bad hypo to follow. Yes, it's not perfect. But it's relatively painless, doesn't get in my way and has improved my quality of life so much. Which if anything, makes me want to fight even harder for equal access.
Hey Bec! Thanks for writing this. It's so interesting to get your perspective. I so wish CGMs were funded like pumps are. Maureen
ReplyDeleteHey Maureen! So they should be in my opinion. At least it's sounding like the under 21s should get something from the government in due course
DeleteFingers crossed hey
I'm so happy for you that you have your CGM and that it's (now) working well for you. I'm sorry you have to pay so much out of pocket for it though.
ReplyDeleteThanks Karen :)
DeleteI enjoyed your post, and I am so glad you like the CGM. I love mine and think of it as the best diabetes device I have.
ReplyDeleteI definitely agree, thanks Rick!
DeleteYAY CGM!!! Im glad to see you're enjoying it a bit more now :) The sleeping, eating and exercise is awesome .
ReplyDeleteyesss it's glorious!
DeleteHi Bec
ReplyDeleteHi Bec thanks for posting. How are you liking the cgm? My son got one few days ago. To be honest I don't like it that much. It suspends too early then he has a rebound high. It has prevented a few hypos but i find its not that accurate. So am searching on tips to fine tune it before we commit to the 12 month subscription. Interesting to see how he will react when we have to take off all those stickers in 2 days! Ouch!
Jac
Sorry for the late reply! I like it quite a bit when it's accurate, and its accuracy has been improving :) For me it was finding the right spot. A sensor will not work on my stomach. Never accurate. I have to put it on my side behind my hip and it's 100%.
DeleteHope it works out for him