3 ms·

Being a thermostat is fucking exhausting. My wife and I are the equivalent of a thermostat for our type 1 diabetic son's blood sugar. It's in our face 24/7.

frxhvcdtgf 2y ago
My son has a dozen or so food allergies. It is exhausting. Then, I know people with autistic kids. Wow.
- thebruce87m 2y ago
  “Health is a crown that the healthy wear, but only the sick can see.” This applies to so many things, not just health. You only appreciate it when it happens to you, or you get a snapshot of someone else’s life and it humbles you.
Trasmatta 2y ago
I'm type 1 myself, so I feel for you. People don't realize that the hardest part is NOT needles or anything like that, it's the constant mental overhead of thinking about and managing your blood sugar every moment of every day. Every decision you make is informed by it. You make literally hundreds of micro and macro decisions related to your diabetes every day. A CGM and insulin pump have made my life easier. How old is your son?
- GiorgioG 2y ago
  He is 13 and he wears a Tandem X2 w/Dexcom G6 (soon to be G7?). It certainly makes life easier, but like you said there's constant mental overhead. We have SugarPixels all over the house, etc. His pump beeps at him so often he's just become accustomed to it and ignores it until he starts feeling bad (typically when he's going low). But that also means that it limits his ability to do things, he's got only a handful of friends that we trust leaving him alone at their home because their parents are willing to keep checking on him, etc.
  - Trasmatta 2y ago
    Being a caregiver for a kid with t1 is exhausting, so kudos to you and your wife. The mental burden is SO HIGH for both the person with the condition and their caregivers. At some point if it feels right, it might be worth having him see a therapist or a counselor who specializes in chronic diseases. There's a very high correlation between depression and type 1 diabetes (last I read, you're like 300% more likely to experience severe depression as a T1D.) Especially once he goes into his teenage years, that's a really hard time for a lot of us diabetics (and sometimes during the "rebellious" phase, a kid will intentionally stop taking care of their diabetes). > His pump beeps at him so often he's just become accustomed to it and ignores it This is a real problem with insulin pumps and CGMs, because alarm fatigue is a real thing. It makes me mad that they insist on putting in all these alarms you can't configure, because eventually you just start ignoring it. For my CGM, I use xDrip which gives me much more customization around my alarms: I just leave on the ones that are important to me.
cperciva 2y ago
Closed loop. Seriously, my t1d-related mental exhaustion is 90% reduced now that I'm using a closed loop. 95% if you don't count the "why did androidaps disconnect from my pump and which bit do I need to restart to get it working again" headaches. In a way it's eliminating too much mental effort; while it's useful as a backup, the fact I sometimes completely forget to take insulin with meals is not ideal, even if the closed loop notices and takes care of it for me (since there's inherently more lag when relying on the loop than if I dialed in the insulin at meal time).
- Trasmatta 2y ago
  Do you still enter carbs, or do you just announce meals? I know some people with closed loops just do the latter. If you don't mind sharing, what's your time in range? I have the Omnipod 5 which is decent, but it's "closed loop" abilities are extremely conservative and a bit disappointing. I've considered going the full way with androidaps, but haven't taken the leap yet.
  - cperciva 2y ago
    Androidaps says I'm 85% within 3.9-10.0 (70-180) in the past week. I enter carbs but only to a resolution of 10g; and as I mentioned earlier I sometimes forget to enter them entirely. Are you using a Dexcom with your omnipod? My impression is that the quality of sensor is the most important factor; with a flaky sensor looping algorithms will be more conservative since they (reasonably) prioritize avoiding lows.
    - Trasmatta 2y ago
      > Androidaps says I'm 85% within 3.9-10.0 (70-180) in the past week Nice! > I enter carbs but only to a resolution of 10g; and as I mentioned earlier I sometimes forget to enter them entirely. I'm pretty bad at accurately entering carbs. I eat out enough that I've just gotten to the point where I just come up with a rough estimate (which is often wrong). Which means I have to adjust later pretty frequently with snacks or correction doses. Not ideal, but I got so much "carb counting fatigue" over the years. > Are you using a Dexcom with your omnipod? My impression is that the quality of sensor is the most important factor; with a flaky sensor looping algorithms will be more conservative since they (reasonably) prioritize avoiding lows. Yeah, I'm on the G6 still. I think the quality of my readings is pretty good, but the Omnipod 5 algorithm is pretty conservative anyway: rather than naturally bringing you down from a high, you usually have to explicitly give yourself a correction dose. Which I suppose makes sense, but I have read that some people have had a lot more success with looping in Androidaps vs the Omnipod 5's algo. I also wish you could set the "target" a bit lower in the 5. You can't tell it to target below 120: I feel like 100 or 110 would be more reasonable, but again, it makes sense that they prefer being conservative.
kouru225 2y ago
Let’s hope that smart insulin comes to market soon (and is affordable)

frxhvcdtgf 2y ago

My son has a dozen or so food allergies. It is exhausting. Then, I know people with autistic kids. Wow.

thebruce87m 2y ago
“Health is a crown that the healthy wear, but only the sick can see.” This applies to so many things, not just health. You only appreciate it when it happens to you, or you get a snapshot of someone else’s life and it humbles you.

Trasmatta 2y ago

I'm type 1 myself, so I feel for you. People don't realize that the hardest part is NOT needles or anything like that, it's the constant mental overhead of thinking about and managing your blood sugar every moment of every day. Every decision you make is informed by it. You make literally hundreds of micro and macro decisions related to your diabetes every day. A CGM and insulin pump have made my life easier. How old is your son?

GiorgioG 2y ago
He is 13 and he wears a Tandem X2 w/Dexcom G6 (soon to be G7?). It certainly makes life easier, but like you said there's constant mental overhead. We have SugarPixels all over the house, etc. His pump beeps at him so often he's just become accustomed to it and ignores it until he starts feeling bad (typically when he's going low). But that also means that it limits his ability to do things, he's got only a handful of friends that we trust leaving him alone at their home because their parents are willing to keep checking on him, etc.
- Trasmatta 2y ago
  Being a caregiver for a kid with t1 is exhausting, so kudos to you and your wife. The mental burden is SO HIGH for both the person with the condition and their caregivers. At some point if it feels right, it might be worth having him see a therapist or a counselor who specializes in chronic diseases. There's a very high correlation between depression and type 1 diabetes (last I read, you're like 300% more likely to experience severe depression as a T1D.) Especially once he goes into his teenage years, that's a really hard time for a lot of us diabetics (and sometimes during the "rebellious" phase, a kid will intentionally stop taking care of their diabetes). > His pump beeps at him so often he's just become accustomed to it and ignores it This is a real problem with insulin pumps and CGMs, because alarm fatigue is a real thing. It makes me mad that they insist on putting in all these alarms you can't configure, because eventually you just start ignoring it. For my CGM, I use xDrip which gives me much more customization around my alarms: I just leave on the ones that are important to me.

cperciva 2y ago

Closed loop. Seriously, my t1d-related mental exhaustion is 90% reduced now that I'm using a closed loop. 95% if you don't count the "why did androidaps disconnect from my pump and which bit do I need to restart to get it working again" headaches. In a way it's eliminating too much mental effort; while it's useful as a backup, the fact I sometimes completely forget to take insulin with meals is not ideal, even if the closed loop notices and takes care of it for me (since there's inherently more lag when relying on the loop than if I dialed in the insulin at meal time).

Trasmatta 2y ago
Do you still enter carbs, or do you just announce meals? I know some people with closed loops just do the latter. If you don't mind sharing, what's your time in range? I have the Omnipod 5 which is decent, but it's "closed loop" abilities are extremely conservative and a bit disappointing. I've considered going the full way with androidaps, but haven't taken the leap yet.
- cperciva 2y ago
  Androidaps says I'm 85% within 3.9-10.0 (70-180) in the past week. I enter carbs but only to a resolution of 10g; and as I mentioned earlier I sometimes forget to enter them entirely. Are you using a Dexcom with your omnipod? My impression is that the quality of sensor is the most important factor; with a flaky sensor looping algorithms will be more conservative since they (reasonably) prioritize avoiding lows.
  - Trasmatta 2y ago
    > Androidaps says I'm 85% within 3.9-10.0 (70-180) in the past week Nice! > I enter carbs but only to a resolution of 10g; and as I mentioned earlier I sometimes forget to enter them entirely. I'm pretty bad at accurately entering carbs. I eat out enough that I've just gotten to the point where I just come up with a rough estimate (which is often wrong). Which means I have to adjust later pretty frequently with snacks or correction doses. Not ideal, but I got so much "carb counting fatigue" over the years. > Are you using a Dexcom with your omnipod? My impression is that the quality of sensor is the most important factor; with a flaky sensor looping algorithms will be more conservative since they (reasonably) prioritize avoiding lows. Yeah, I'm on the G6 still. I think the quality of my readings is pretty good, but the Omnipod 5 algorithm is pretty conservative anyway: rather than naturally bringing you down from a high, you usually have to explicitly give yourself a correction dose. Which I suppose makes sense, but I have read that some people have had a lot more success with looping in Androidaps vs the Omnipod 5's algo. I also wish you could set the "target" a bit lower in the 5. You can't tell it to target below 120: I feel like 100 or 110 would be more reasonable, but again, it makes sense that they prefer being conservative.

kouru225 2y ago

Let’s hope that smart insulin comes to market soon (and is affordable)