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Having your insulin pump die while you're on vacation

blog.lauramichet.com

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Re: Having your insulin pump die while you're on vacation

#51

Post by spacedcowboy »

asyx wrote: post #44
bluesounddirect wrote: post #12

My wife is a t1d and has the same pump. It sucks their support staff has no idea how the thing works or what its failure modes are. My wife once had her x2 tell her it gave here a 40 unit bolis out of the blue . This would have killed her. While in the er support from x2 said something like "there is no way for it to do this .. you must be wrong.. are you reading the display correctly .." All in all the x2 plus dexco…

That’s kinda why I don’t want a pump. I’d rather deal with it myself than have some garbage corporation cut every corner and save every cent they can on a device that is keeping me alive. I’d rather have a glucose pump to be honest. I don’t need long lasting insulin so I don’t really need to care about dying in my sleep but lows scare me more than highs.

I mean I'd far rather have the pump than not, also a t1d.

I dont bother wearing it at night though. All my blood sugar does is decline overnight, and the pump isn't the signal that things are going awry, that's the GCM. The GCM will still signal the pump, my phone and my watch to wake me if I need to eat carbs (vanishingly rare) and the pump never changes my blood sugar overnight anyway as far as I can tell.

So I disconnect it, put it back on in the day so I can manage things while I eat food.

Re: Having your insulin pump die while you're on vacation

#52

Post by thomascountz »

This feels important to read, and I appreciate the author's candor.

You have to remember that not every character (for lack of a better word) in every story you read, needs to be morally justified in their thoughts, emotions, and actions. This author is angry, humiliated, scared for their life. It's not compelling to discuss their thoughts without empathy. If you don't think you would feel or say the same, were you in their shoes, imagine "what would need to be true for me to feel, think, act that way?"

This way of empathizing, where you assume the role of another without assuming superiority, may help you better understand what the author is trying to communicate. What must it be like, what might they be going through, how vulnerable must it feel?

The author is dealing with a minute-by-minute reminder of how easy their life could end. Most readers will have never experienced this. On top of this, they are dependent on a company and system, which is only tangentially designed to keep their body alive. During a time when the author dare to have a vacation away from home, an experience something many of us don't realize we take for granted (maybe not financially, but the fact we are able-bodied enough), they are faced with losing their life like never before.

I think the author needs no justification for their apparent rage. It's refreshing to hear a voice we don't often hear. We are often raised being told these feelings of grief and rage are bad, unmoral, crass. That we should judge others who express them.

Here is one person's story you happened to come across. If you have trouble empathizing, remember, at best, we are all just temporarily able-bodied. You may do well to reckon with these experiences now, before your existential challenges are picked apart as inconvenient or uncomfortable for others.

Re: Having your insulin pump die while you're on vacation

#53

Post by senordevnyc »

oompydoompy74 wrote: post #15
Symbiote wrote: post #8

I don't think the attitude in the first several paragraphs, wishing harm to the pump engineers etc, can lead to a good discussion.

Not every blog is written to be discussed on Hacker News. That being said I enjoyed it and found it illuminating. It could be a regional difference, but I’m from the South East US and didn’t mind the direct communication style at all. I much prefer someone to speak their feelings rather than being nice for the sake of nicities.

Ironic, because my experience of living in the south is that the fake niceties are deeply ingrained in the culture. Classic fun example: “bless your heart” basically means “fuck you”.

Re: Having your insulin pump die while you're on vacation

#54

Post by wizzwizz4 »

asyx wrote: post #48
wizzwizz4 wrote: post #18

Earlier quoted context omitted.

No, but it feels that way if you're an agreeable people-pleaser. (This is, of course, a bad habit, but it's a common one, and it's not one that merely acknowledging will divest you of.)

Lots of mean things she writes in her blog post for a people pleaser though. Like, I get it, but the blog should then be about how being a people pleaser almost killed her and not how bad support was at reading her mind.

It is.

> Admittedly, I did have an opportunity to cause a fuss which I did not choose to take […]

> This was dumb of me. I should have caused a bigger fuss. If I'd bitched to more people and made more phone calls and […]

> So I escaped this extremely risky and stupid problem - partially of the pump's making, partially of my own creation - with zero consequences other than the fact […]

> I hope that you can understand why - even when I made the situation worse by not throwing a big enough fit - I held in my heart […]

The blog post says things other than "this was all my fault" (which, channelling Nancy G. Leveson, is not something we should ever say about the failure of a complex system), but it does very much say what you say it should say. The vast majority of the "mean things" in this blog post are polite descriptions of the facts; the remainder are rather mild expressions of frustration, plus one death wish against a hypothetical someone exhibiting an extremely obnoxious communication behaviour.

Re: Having your insulin pump die while you're on vacation

#55

Post by senordevnyc »

redserk wrote: post #31
chemicalsnakes wrote: post #16

Uh, okay, she didn’t advocate for herself on the phone and darkly alludes to not knowing what could have happened if she’d told them she wasn’t at her home and needed her replacement pump sent to another address. I think they would’ve sent it to the hotel without a problem. Her takeaway is that she should have been “meaner” on the phone, but I think just honestly expressing her situation would cover it. And “I don't…

Blaming her is not the right call on this. The technology is absolutely amazing for the quality of life it’s given us, especially those with medical conditions, but the failure of technology in these scenarios can lead to hospitalization or death. The customer care line requesting information about a plan means the patient’s care in a will-be life-threatening scenario was not prioritized. Deprioritizing patient care…

I didn’t take their comment to be about blame, it’s more about a pragmatic view of what’s going to be more effective for an individual. Sure, you can tell your diabetic daughter that the world should be one way, and rant and rave about it all you want, but none of that will keep her alive.

Re: Having your insulin pump die while you're on vacation

#56

Post by YeGoblynQueenne »

indrora wrote: post #26
1123581321 wrote: post #4

I’m diabetic and found this strange for a few reasons. There’s a postscript in the blog post wishing death from diabetes on any diabetic who tries to point any of it out—so I’ll leave it at that.

The author isn't talking about you. The author is talking about the people who will inevitably email with explanations about how she's doing something wrong or things are not as bad as they seem or any number of other options. I have asthma in a particular form, and when people hear that I get triggered by extensive exercise and hill climbs and that I have to take things slow (it's gotten progressively worse in the l…

Many people ignore that there is a good chance they will end their life infirm or disabled and are therefore happy to shit on people with chronic (or even acute!) diseases and disabilities like that's a group of aliens that they will never belong to.

No worries though. As we say in Greek, "όλα εδώ πληρώνονται". Loosely translated, what goes around, comes around.

Re: Having your insulin pump die while you're on vacation

#57

Post by sigilis »

Symbiote wrote: post #8

I don't think the attitude in the first several paragraphs, wishing harm to the pump engineers etc, can lead to a good discussion.

Fortunately, having a discussion does not appear to be the goal of this blog post. The author is relating a story including their feelings on the matter. It’s not really about us, unless you’re working for a pump company or could possibly address the structural issues that have led to this situation.

Honestly, I found it illuminating. I don’t depend on a machine to keep me alive directly, but it made me think about how much I would resent dangling at the end of a line held by a company that would cut me off if investors thought it would make them slightly richer. One that cuts every corner they can, and doesn’t actually care about you. I imagine that resentment over years, a quarter century of things getting worse on the “caring whether you live or die” front, might lead to the feelings the author expressed.

It’s pretty clear that discussion is not desired, unless you have the cure for type 1 diabetes in hand before you send the first reply.

Re: Having your insulin pump die while you're on vacation

#59

Post by sowbug »

Symbiote wrote: post #8

I don't think the attitude in the first several paragraphs, wishing harm to the pump engineers etc, can lead to a good discussion.

Retired manager, been in my share of tense meetings.

I appreciate it when someone recognizes that they're struggling with conflict and emotion, and lets me know that they know this. It's better to acknowledge the emotion and put it on the table as its own valid topic of discussion, than to tiptoe around it or try the "I'm sensing that you're dealing with some internal conflict" approach that risks embarrassing them or worsening it.

The choice is whether to acknowledge the emotion, not whether to have it.

Re: Having your insulin pump die while you're on vacation

#60

Post by asyx »

spacedcowboy wrote: post #51
asyx wrote: post #44

Earlier quoted context omitted.

That’s kinda why I don’t want a pump. I’d rather deal with it myself than have some garbage corporation cut every corner and save every cent they can on a device that is keeping me alive. I’d rather have a glucose pump to be honest. I don’t need long lasting insulin so I don’t really need to care about dying in my sleep but lows scare me more than highs.

I mean I'd far rather have the pump than not, also a t1d. I dont bother wearing it at night though. All my blood sugar does is decline overnight, and the pump isn't the signal that things are going awry, that's the GCM. The GCM will still signal the pump, my phone and my watch to wake me if I need to eat carbs (vanishingly rare) and the pump never changes my blood sugar overnight anyway as far as I can tell. So I dis…

You don’t have dawn syndrome? Mine shoots up to 200 in the morning without food. If I don’t eat breakfast I take 5 units fast acting in the morning to keep the levels down.

I just don’t see pens as so much of a hassle that I’d give up the control of a pen for the convenience of a pump.

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