Your survival is ultimately your own responsibility. Prepare yourself for a few hard truths.

No one — including nurses and doctors who are not specifically trained in diabetes management — truly knows your situation.

I had a TIA. I was barely functioning, hospitalized, semi-conscious. Not a single person in the ER, nor during the entire week I was admitted, stopped to think that maybe I wasn’t mentally fit to manage my own CGM.

Always be prepared.

I once found myself in what my company had sold to me as a “hotel” in Germany. It was really more of a shack. I was having a severe hypo, glucose at 70 and dropping fast. There was no lobby, everything was closed, emergency services didn’t speak English, and I couldn’t even find a taxi willing to come out there.

I ended up licking sugar crumbs and biscuit dust that had accumulated over the years in the pocket of my suitcase.

Your CGM can fail. In fact, it will almost certainly fail while you’re on vacation on some Greek island with no signal.

You must know how to manage your blood sugar with insulin pens. Even with different insulin types. You need conversion charts. You need the phone number of your diabetes center so you can get proper instructions. You must be able to change an infusion set in the dark, slightly drunk, like Rambo — except this isn’t a movie.

You need to remember your insulin-to-carb ratio and be able to estimate the carbohydrates in a dish you’ve never seen before.

I’m lucky enough to be able to “feel” my blood sugar. More importantly, I can sense when I’m heading toward a hypo, and I do everything I can to preserve that personal superpower.

As we say in Italy, being diabetic is serious business.

My colleagues and friends see only the outside. They see a well-managed condition, an HbA1c of 6. They laugh when I tell some of the more extreme stories.

But they have no idea — absolutely no idea — how difficult our lives are.

Ours, and our families’.

Not diabetic but my car was stuck on a mountain on a Greek island with no signal. In hindsight it was fun, but when it happened I initially feared for my health. We were at the highest road stuck in the snow with a car that had no business being in snow. Luckily my wife is a born and raised Michigander and she showed my Dutch ass how to handle real snow. She started digging in the mountain side to grab as much small rocks as possible since every Michigander has cat litter so that wheels can get traction.

Without it, we would still be stuck.

In twenty years of living with diabetes, I've made an unbelievable number of mistakes — enough to fill a warehouse.

Every one of them became a lesson, provided it didn't kill me first.

One of the biggest lessons, in fact, was learning to be extremely organized and always prepared.

Yes, in that particular case I had already used up my supplies (and during a three-day trip I hadn't thought about bringing a refill), and, rather stupidly, I wasn't carrying glucagon with me.

I've never claimed to be smart — just a survivor of my own stupidity.

Just a final recent anecdote to illustrate some of the complexity. It may look like maths on the surface, but even something like "carbohydrate ratio" is a fluid concept. Yesterday for example I was out and about in the sun and had the very same bottle of sweet tea that I have had for months. Given that I knew I was physically active and it was hot, I reduced the usual dosage for this specific drink by 80% to be on the safe side. To my surprise, on this particular day for whatever reason this was still far too much and I pushed myself into hypoglycemia in little over an hour. We humans are highly dynamic and complex systems and this is me failing with the very best technology we have available: Insulin pump and continuous glucose monitor.

I always keep a blood glucose meter in my backpack. You know, that medieval-age stuff with the finger-pricker and test strips. (You can buy one for about €10 in pretty much any pharmacy in Europe, but it’s better to already have one with you.)

And pen needles, too.

You can also walk into any pharmacy or walmart in the US and by rapid acting insulin for about $20. no doctor, no insurance, and no Rx necessary (unlike France). Also, they had a massive supply of insulin. If they bothered, they could have bought some needles and looked up the conversion.

As a European, I genuinely struggle to understand how you cope with your healthcare situation.

In France, in a small mountain village, I walked into a pharmacy and, through a combination of gestures and sketches, managed to buy a box of rapid-acting insulin at full price (around €30–40).

The insulin was clearly available. The issue was purely bureaucratic — technically I needed a prescription from a French doctor. But the urgency of the situation, and the fact that I was obviously diabetic, were equally obvious.

We certainly have our own problems over here, don't get me wrong.

But I don't envy yours.

Quick tip for people that might encounter such situations:

- Phone to the emergency number. In Europe, it's 112. In France 15 is also working. Explain your situation (they generally do have English support).

- In many European countries, it is a Doctor you will have on the line. They can forward a medical prescription by email to the pharmacy close by.

- Even if you are not insured, the only thing it will cost you is the price of the medicine. For insulin, it variates from 20 to 40€ depending of the country.

- If you are over weekend or in middle of the night, in many EU countries have emergency pharmacy system. Some dudes somewhere on duty will open a pharmacy for you and you have to come on site.

If you are in France and if you wake them up at 03h00am, you can probably expect the legendary 'frendliness' (irony) of French customer service but at least you will stay alive.

As an American, most Americans don't realize how bad it is because everything seems fine when you are insured and only need basic care. The huge problems aren't immediately apparent until you suddenly get diagnosed with something serious and become a cost center for your private insurer instead of pure profit for them. At that point they realize how fucked they are and how much the insurance company will fight tooth and nail to deny care.

Everyone else tries to ignore how fucked those people are out of superstitious belief that maybe they too will fall into the Unfortunate Situation group if they think about it too much.

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.

I once forgot it on a trip to a different state, and tried to sleep in the hotel but basically just had insomnia, as I could no longer pass out when I woke up from the apneas. Terrifying to think I did so earlier in my life.

Anyways, I lucked out as I went to craigslist and found one during that trip the next day.

But even if I was home, I'm no longer eligible for a CPAP since my last sleep study was roughly 13 years ago. Apparently they think my anatomy is magically improved since then, aka the US medical system wants their cut of my time / money to keep living.

So even my recent new purchases are from folks on craigslist.

It's wild they would rather me go through another sleep study when during my initial one they cut it short because I had such severe apnea (of the sort where I could have a heart attack without it). They hooked me up to a machine within around an hr or so. Now that I'm older, the risk is even worse.

Thinking back later:

- I wonder if I could have sealed the area where the water chamber goes and done it water-free?

- I should have taken 1x extra parts for everything

- I have a complete second setup, maybe I should have taken that?

thing is, the 100's of times I didn't need to "overthink" things set my "over" and "appropriate" thinking levels and I thought i was ok.

as to the sleep study - it is LOTS less invasive nowadays. You probably take a device home with you, strap it to your body while you sleep and return it the next day. None of this "sleep in hospital setting" nonsense.

So patients and doctors fight to have things continue to be restricted so that their workplace insurance will pay for it.

I was able to get a new prescription for < $100, and bought a new APAP for about $600, no new sleep study required.

If you already have an OSA diagnosis you don't need a new sleep study for a new script provided the doctor is just willing to sign off a new prescription for supplies.

I've had a CPAP part failure when I traveled - I used a Dreamstation Go with its special 12mm tubing. The tubing split and I had a hell of a time finding replacement 15mm tubing in the city I was in. I stopped into a random durable medical equipment supplier and went "heyyyyy can I buy a hose I'm really screwed right now!" and they just slipped me a new hose out the back door and shook my hand. Then I had to have a friend 3D-print me a hose adapter... field-expedient medicine is fun.

My current travel setup is now designed to accept as many standard parts as I can ('standard' 15mm tubing available at Walmart/Walgreens/CVS, a 'standard' CPAP mask, and the machine is adapted to use USB-C Power Delivery so I just need a 100W PD source or better to run everything (even battery).

There were some mistakes made but they were all pretty reasonable decisions. But the situation that caused this in order:

1. The support line for the pump won't suggest sending it to where you are because you say you have a backup plan.

2. The support line also isn't a doctor; they can't evaluate how good or bad your backup plan is, just how to deal with the pump.

3. You message your GP. But the message system doesn't connect you live to the on-call practitioner; that's a phone number that is not easily findable.

4. Your GP fills a prescription for the backup pen and sends it to the closest pharmacy.

5. The pharmacy takes the prescription, but they don't actually know if they can fill it until later. They also can't find a pharmacy farther than 25 miles away from the current location.

Each issue is reasonable by itself, but the end result is that the patient had to call 2 different people, go to a pharmacy, and still wasn't able to get what they needed. The gaps that could have (theoretically) been patched are:

1. Support could have known the possible workarounds. I realize that legally it could have been dicey, but the "fix" suggested on Reddit seems like something that could have been mentioned as an interim solution.

2. Your GP could make it more obvious which communication method reaches the office on a weekend.

3. The GP should be able to talk to the pharmacy to ensure they have the medication in the prescription.

4. The pharmacy should be able to search farther than 25 miles to find a medication for a prescription they've been sent.

It should be much more difficult for a patient to hit every edge case like this, especially when just being able to talk to each other would have stopped some of these.

I do think that the US is obnoxiously conservative, and far more medications should be OTC.

Instead, you cant even buy kidney friendly cat food without an expensive Rx from a vet and tons of controls. Heaven forbit someone buy it without proper consultation. Think of the Kittens!

Edit: after some reading, it seems that Canada and US are outliers in the west for allowing OTC insulin. UK and Europe requires Rx for all insulin.

Asia is more mixed. Japan, Korea: Rx required. China, Rx on paper, OTC in practice. India OTC

There are a few law suits over this. Essentially, the claim is that they call it "prescription," but it has no prescription medications in it and isn't approved by the FDA to treat anything. So if you have an extra bag and sell it, this is OK since it isn't actually a drug, it's allegedly a price fixing scheme between vets and pet food makers.

Yes, OTC for everything. I've heard that some pharmacists ask more questions about types which are commonly abused by body builders but that's about the extent of it.

Funny story since you mention cats: My brother's cat was diabetic and prescribed long acting insulin which cost $250/vial. I looked it up and... apparently it was just relabeled lantus, because of course nobody is going to waste money on a separate manufacturing line. Ended up buying it from my local pharmacy, without a prescription, instead of using the vet prescription.

Meanwhile, half the flea treatment medications available OTC are straight up toxins to the cat.

The problem of many hands - when responsibilities in a group that collectively does harm are divided between many people, who can be held accountable when each person individually acted reasonably?

I think organizations are, more and more, siloing roles in this way intentionally (or at least emergently), such that blame can only ever be collective if they do harm. Since it's so much harder to redress collective blame, this can be effective in avoiding consequence entirely.

It isn't completely inevitable, I think it's possible for relatively strong leadership to understand that the processing of responsibility through an organization is a necessary feature and people handling it without external forces conspiring to make it even more like that it will "burn out" a part of the org is a necessity and a good thing. But it's really easy for an organization to just default to burning out the path and evolving ways to avoid it in the future, and it is very motivated to make it happen.

It would be perfectly valid for the law to be that individuals don't need to unpick the corporate web of relationships, but hold any of those who contributed (above some size threshold) culpable for the whole injury, and leave the corporates to arm wrestle about how culpability is assigned between them.

This might mean not taking a patient or class of patients into care.

"You can't justify hanging us all from the overpass" is the magic of the system.

And not just the medical system.

The author screwed up. "I'm not at home and need you to send the new pump to my hotel." Problem solved. Yes, the customer service rep should have pro-actively offered to do that, but c'mon. That is a super basic thing to request, and people need to advocate for themselves. And that's not even "advocacy" in any difficult sense; it's a basic request that the company should have had no problem complying with. If they did refuse to send it to where the author was, then that would be grounds for an angry blog post.

On top of that, the author, clearly a functioning adult human, seems to have never had the imagination to ask herself, "what happens if my pump breaks; what is my backup plan?" Hell, that's an important question to have an answer for when you're at home, not just when away on a trip. Based on her words in this blog post, she clearly absolutely knows that this device is critical for maintaining her life. Devices break sometimes. You need a backup. Preferably two backups, for something as critical as this. This is just basic common sense.

[0]: https://www.risehealth.org/insights-articles/article/justice...

[1]: https://en.wikipedia.org/wiki/Purdue_Pharma

This would have solved the entire problem, right there, immediately. The author would have been doing the annoying cartridge swap until the next morning, and then would have had a new pump waiting at their hotel. No more stress, no need for a blog post longer than, "my insulin pump was on its last legs while I was on vacation, but the company got me a new one in less than 24 hours and everything was fine and not particularly stressful at all, whew!"

I agree that #2 is reasonable. The insulin pump manufacturer isn't going to put a doctor on the phone for any random call to their customer service line. I do think they should have doctors on staff who can be escalated to, though, if needed.

#3 I'm not sure about. When I send a message to my doctors, the messaging system is very clear to warn me with every message I send that it may be several business days before they respond. If the messaging system in question has that same warning, that's on the author again, even if they were lulled into a false sense of on-call levels of response times based on past experience.

#4 doesn't feel reasonable to me at all. Insulin should not be gated by a prescription. I'm fine-ish with the idea that insulin can be available through a prescription (because then you'll likely get a better deal on it when your insurance company covers it). Downthread it seems that in the US you can walk into any pharmacy or Walmart and buy some forms of insulin without a prescription, for a fairly reasonable price. I guess the author didn't know about this.

#5 is not reasonable in the least. Any pharmacy employee should be able to search for the closest branch with insulin, regardless of distance, or be able to say "give me the closest insulin to these coordinates" or something like that. That's just absolutely terrible UX in whoever specced out and implemented that search function.

Just this morning, I ended up bolusing correctly, but then an emergency caused me to perform a lot more exercise than I had planned on. Then, bam, I'm paralyzed in bed, thinking about calling the ambulance, eating sour patch kids.

And believe me, when sour patch kids are an effective medicine, you have a disease that must just exist for spite.

So yeah, I feel like I can control conditions better with MDI, and can't seem to make the jump to a pump, even though it'd almost certainly improve my health and long-term survivability.

> And believe me, when sour patch kids are an effective medicine, you have a disease that must just exist for spite.

Feel free to ignore below if spk's were just the closest, but there are better flavored non-melting options that also travel well.

I keep some Transcend gels (available from Amazon) on my nightstand and scattered all around my house. They'll "burn" if you need to suck down three or more back-to-back (I rarely need them, and when I do it's usually only 1) but they're a zillion times better than any candy with predictable (5-10 mins) time for the glucose to hit you - unlike candy. They recently changed the packaging design, so you'll need to snip a tiny bit off the corner (sorta like a tiny pre-cut) in case you need to open with the convulsions.

So I just keep sour patch kids all the time in my pack.

But I'm always up for something else, especially when the SPKs are in an "ick" season. I appreciate the recommendation. SPKs have an absurdly high glycemic index though and seem pretty predictable for me.

I really need to get proper glucose tabs and stuff, and be like a "professional diabetic"... but I'm working on time-in-range, not "did you swab with alcohol" at this point, lol. I just feel good that I'm not shooting through my clothes.

Sorry for the day, fellow traveller, hope you get things nailed shortly.

When I browse the candy aisle at the store, I often wonder if certain treats tend to be better than others for administering glucose. In your experience, are there ever certain properties of candies that are more useful than others?

You're basically looking for something that's analogous: as crack is to cocaine, <low snack> is to sugar. Hits fast and doesn't last as long.

We really need some version of "permanent prescriptions" for insulin. Not OTC, because then insurance doesn't cover it, but infinitely renewable, so you don't have to go see an endo just to continue living.

Like didn't even warn me of the dangers of hypoglycemia. After I nearly went comatose one time, "oh yeah, we have glucagon you can get if you'd like a prescription". Which is cool after you've been passed out in front of a restaurant, with people looking at you like they're going to hit you with narcan.

One of my secret terrors is getting narcaned by a cop.

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 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.

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.

Side bar having been around the dexcom for 10 years now . The old/original audible alarms were easy to understand. Low crescendo for going low , low repeats for low alarm and the reverse for high events. With the x2 and g6 i literally have no idea what the beeps mean anymore. This alarm fatigue is bad and i wonder if this contributes to the authors issue too. Was there some warning she missed?

Medicine has a curious form of parochial paternalism: doctors, endowed with complete responsibility for your body, bodies in general, and anything that might affect a body, will confidently make claims and assumptions far outside their expertise, and completely ignore the factors outside their purview. Their role is to be the calm and reassuring face of medicine, even at the expense of a necessary humility about the complexity of the systems outside their office.

The bulk of the actual care is done by various non-doctors with a dizzying and overlapping matrix of responsibilities, all but guaranteeing that important things get dropped or missed. But all of that is meant to be fine, because the doctor is the single responsible person who will catch whatever the patchwork misses. Only they don't, because they're doctors, not social workers, not healthcare administrators; they rarely see the full picture.

This leaves only the patient, who, while suffering and with no particular expertise, has to become their own doctor, pharmacist, technician, administrator and patient advocate if they want to receive the best care.

Of course, the best care usually isn't necessary for a good outcome, and if you have an uncomplicated problem with a standard solution, chances are the medical system works just fine for you. But when you slip off the beaten path you very quickly realise that the facade has so many cracks that it's as much cracks as facade.

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 last two years after COVID) I will inevitably be told "well you need to exercise more."

Exercise can't fix scar tissue, bob.

Because that's what I'm fighting. I don't have a full pair of adult lungs. I have two lungs that got the shit beaten out of them when I was 3. Could I use some more exercise? Certainly. Will it magically fix my asthma? no.

Anyway, I thought the curse was funny and I’m glad 1-2 of the other replies got that.

Of course not. You need yoga for that.

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

But I agree with the GP that this is just strange. I'm not diabetic, so I don't have anything to say about management of the condition itself, but two things were absolutely nuts to me:

1. The author didn't ask for the pump to be shipped to her hotel. She gave an explanation for why she didn't ask for this, but that explanation doesn't make sense. And if she had asked for that, the problem would have been solved by the next day, with minimal fuss or extra stress.

2. The author seems absolutely flabbergasted and in awe at the idea that a mechanical device can break. Yes, I get that she used insulin pumps for 25 years without a failure, but c'mon. Everything and anything can break, even a medical-grade device. Based on her description of how many extra cartridges, syringes, insulin, etc. she brought with her tells us that she does understand the concept that things break and unexpected things happen. Why this huge blind spot around the possibility that the pump (or the CGM) could break too? How could she never ask herself the question, "if my insulin pump breaks when I'm not at home, what will I do for a backup?"

Neither of these points has anything to do with medical knowledge or understanding of how any particular medical condition is managed. They just seem like simple common sense to me, as a fellow adult human who lives on the same planet.

From the author's "here's what I'll do next time" section, it seems she's learned the right lesson and will bring a backup for her entire pump/monitor setup on future trips. Great! I'm glad. But it is absolutely bizarre to me that this isn't just SOP for anyone who relies on any piece of technology for anything, even for things that aren't life-threatening.

And sure, I guess you can wish painful death on anyone who shares your form of asthma and has suggestions, but it definitely says a lot more about you than them.

Found your comment strange, did you read this incorrectly?

The FDA approved stuff is much more of a one-size fits all, and I understand why it needs to be that way. I just wish we had more open pump options in the US.

One thing I now do is always travel with one of my old insulin pumps. They may be 5, 10, even 15 years old, but they take the same infusion sets and all they need is a fresh AA/AAA battery and they’re as good as new. Thank you to the medical devices industry for making some resilient AF kit.

However every time I've gotten a new pump, the diabetes educators always instruct you to have a backup plan, whether that's your insulin vial you may have already brought (even non-disposable pumps require you to swap out the reservoir every 3 days, so you should have insulin with you) along with old-school injection needles, or an insulin pen with needle tips.

Even so, travel is stressful. My carry on is full of backup pods/sensors. But now that my insurance is being annoying and only filling a month at a time, I don't always have an extra...

We panicked quite a bit before we finally figured out we just had to set the connected phone to India Standard Time.

https://www.rand.org/pubs/articles/2021/the-astronomical-pri...

Anyway I was reading through the newly published articles on Bear's discover tab and found this article on there with no upvotes. It's the first time I've seen something go from obscure to frontpage HN

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.

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.

Those of us without a medical dependency are lucky that catching one of the many tech failures modes won't actually kill us - but you'll still want to throttle more than a few folks if you ever have to recover from your Google/Apple ID getting banned, or PayPal running off with all your money, etc.

(Not above criticism, of course, but weird to lump them together as insidious "tech companies").

You can't have a reasonable customer relation with any corporation when you are a captive audience - let alone one when they could kill you at any moment, whether from negligence or plain indifference.

This plays out in less-lethal versions all over tech. Do you dare redeem that Apple Gift Card your aunt gave you for your birthday, knowing that Apple might nuke your whole digital identity from orbit[1]?

[1]: https://hey.paris/posts/appleid/

Personally, when anger is justified, I feel more comfortable with people who clearly and openly express it.

I find them more reliable, more honest, and usually better people to be around.

By my standards, I'd even consider the style very mild, considering a life is on the line.

I would also consider it normal to be on the receiving end of such language if my own work resulted in such a situation. That would cause me to pause and reflect.

The intensity of feedback is information. If everything is bland, it's harder to know how important something is or not. Logic has a limit because you don't have all the parameters from the other side.

It works the other way around. The overuse of superlatives and day-to-day outrage is equally unproductive.

This is not the case here, IMO.

The thing that's really bugging me is that this is not what happened at all!

"I'm not at home, please send the new pump to my hotel."

That's it! That solves the entire problem in 5 seconds plus the time to tell the customer service rep the hotel's address and verify it's correct. Yeah, there were some other structural problems that led to other dumb things, but none of that would have even come up if she'd done the blindingly obvious thing and had the life-saving, 24/7-required device shipped to her actual location. If anyone endangered her life, it was her, through her own actions.

She really crossed the line for me by wishing harm on the people who designed and built her insulin pump. What the hell? They've done nothing wrong. Yes, her pump was beginning to fail, but 1) it was still limping along with a workaround and she wasn't in immediate danger (and if it did fully fail, she said she was within an hour's drive of an ER at all times, which she felt was fine), and 2) she had never had a pump problem in twenty-five years, which is an amazing testament to the reliability of these devices. The people who work on these things deserve a freakin' medal, not bullshit like "the people who design, sell, and service these machines are both keeping me alive and also my mortal enemies".

It may not be written with that intent, but if you publish something publicly on the internet, you run the risk of some people, somewhere, discussing what you wrote.

That doesn't mean you have to care what those people have to say. Frankly, she shouldn't care what we have to say.

But if you put something out there, and someone reads it, they're well within their rights to have whatever reaction they want to it.

Re: "being nice for the sake of niceties", I agree with you, but her attitude toward the people who work for the pump manufacturer (who did nothing wrong, and in aggregate built life-saving devices so reliable that it took a quarter of a century before her first problem came up) is just not ok. "Beyond the pale" is a phrase that comes to mine, and I don't think I'm being hyperbolic here.

- bring lantus pens

- bring a backup pump. If you've been on a pump for more than 5 years you've probably gotten a new pump because the old one went out of warranty coverage. I have 2 old pumps which still work in an emergency (although without closed-loop - they will still do basal and bolus).

- regarding being forced to prime 10 units of insulin out of the tandem x2 just to use the existing cartridge when the tube is already full of insulin. This has always annoyed me as well. If you are in a pinch or really don't want to waste insulin what I've done is take the needle part off a two-part syringe (assuming you have that kind) and stick the end of the pump tube (the coupling part of the pump site) into the hole of the syringe and prime directly into it. Then you can put the needle back on the syringe and inject the primed insulin back into your insulin bottle.

Lantus alone is going to keep do a majority of the work from keeping going into DKA.

Insulin pumps are going to fail. They are mechanical devices. Batteries fails. The connected phone can fail. At some point in a diabetic lifetime…it is going to break.

The entire reason most patients are taught with subcutaneous insulin is at the start is that there is good chance complex tech will break.

As healthcare providers we get this - we see these patients on the weekly. As patients you may only get experience it once in your lifetime…. Technology will always break at the most inconvenient time. You need to have a back up plan with your health. SQ insulin is the back up plan.

Also use facebook groups if your in a situation like OP is in. I could post on my local T1D group looking for long acting and could get 5-10 offers.

I take a spare sensor, spare pump (Omnipod), spare insulin, and an insulin + dextro.

On vacation, I take a spare phone, in case my phone that manages pomp and sensor breaks down.

It happened already twice on vacation in the past 5 years.

Just a PSA for anyone dealing with medical support lines of any kind in the USA. When they ask whether you have a plan, no matter what topic you are talking about, they are not just making small talk. They are at a decision point in their script - a nice little diamond on a flowchart with different paths for "Yes" vs. "No." Your answer will change path of the conversation.

The best move is to give a thought out, honest answer to that question.

1. Your insurance will pay for an ER visit wherever you are (in the US; the author mentions having a California-based ACA plan). Assuming your plan covers emergency services, they're required to cover ER visits at in-network rates wherever you are in the US, even if the hospital/staff are out-of-network for your plan. I'm not sure if the author is unaware of this, or if the issue is that their insurance will only cover a percentage of emergency care costs in general, and the remaining percentage can of course be a lot of money. I assume it's actually the latter, but I think this is good information for people to have in general. If you have an actual emergency when you're not near home, get yourself to an ER.

Which leads me to one caveat: don't take an ambulance if you can help it; so many ambulance companies[0] in the US do not take insurance, or engage in other fucked-up shenanigans that mean you could be on the hook for thousands of dollars for a 10-minute ride to a hospital.

2. I get not wanting to make waves or get angry at a customer service person who you need to be on good terms with for a piece of equipment that literally keeps you alive. But! "I'm not at my home address and won't be until $DATE. I need you to overnight the new pump to a different address: $ADDRESS." If they balk, ask to speak to their supervisor. If they won't do that, hang up and call back; often getting a different person on the phone can do wonders for your success rate.

[0] Yes, many ambulance services in the US are run by independent companies that aren't even affiliated with the hospitals they might take you to, instead of being run by a hospital or other local municipal emergency services. When you call 911, you never know who is going to be dispatched to respond to your call.

Find a local pharmacy -- preferably not a mega-corporate chain pharmacy like Walgreens or CVS -- and ask to speak to the pharmacist. Tell them your situation. They can often call your regular pharmacy and get your prescription transferred to themselves temporarily over the phone without even getting your doctor involved (if they have your meds in stock). This works better talking to the pharmacist in person than on the phone, especially if you need a prescription that invokes DEA scrutiny like pain meds.

I recommend avoiding the chain pharmacies not because their pharmacists are bad, but because they are often hamstrung by corporate policies that won't let them do things like this without a lot of red tape.

Pharmacists are medical professionals. Use them.

For something like insulin a pharmacist can get you an emergency supply without calling anyone, should they see fit. Might be rare to find such a person though these days.

And “I don't think it's possible to live without resentment for the technology keeping you alive.” This plus all the stuff at the top of the post about how she hates manufacturers of insulin pumps and she’s trapped. I have lived in a very developed country, and I currently live in a least-developed country. I am pretty grateful for the technology that keeps life in the developed world safe and comfortable.

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 when death is a possibility is a grim outcome regardless of where you live.

It's annoying that this is how it works. It would be great if the customer support rep could be better trained, akin to a medical technician's knowledge at least when it comes to the medical condition at hand. But that sort of thing is just not reasonable to expect in the world we live in. Someone with a chronic condition needs to advocate for themselves. Even just "I'm not at home and need you to send the new pump to my hotel" would have likely fixed the entire problem.

I don't know if this is about "blame" or something else entirely. To me, this was very instructive and reminded me that we need to take charge of our own care. Even though it sounds like the author was never in any real danger (by her own admission), this entire situation could have been avoided with a single sentence, one that's incredibly reasonable and not difficult to say.

(I'm also baffled by her incredibly hostile attitude toward people who make insulin pumps. I can absolutely understand being angry at the idea that you need a piece of technology made by a third party in order to live. But calling the people who make that technology -- technology that has worked for her for 25 years before the first problem came up -- her "mortal enemies" crosses a line for me.)

The USA medical system is really fucked up. Finally a Canadian in Vancouver hooked me up with a plastic surgeon while on vacation who agreed to end his vacation early and do the surgery in Campbell, CA ( South San Jose )!

> Flagstaff did not have any insulin for me.

This seems… impossible. They could be out of a specific SKU of Lantus pen, but that’s an entirely different thing from a pharmacy not having any long- or intermediate-lasting insulin. They probably had Lantus vials, or other glargine biosimilars, or NPH insulin or dozens of other types of insulin.

> the Tandem tslim X2 requires the user to "prime" the pump tubing with 10 units of insulin every time the pump shuts down or the cartridge is replaced.

This happens with every pump in one way or another to avoid getting air instead of insulin. There is no pump on the market that doesn’t involve wasting insulin somehow (though getting leftover insulin out of Minimed pumps is much easier)

> To tell the truth: I do not even know how to use the pen. I have never needed to do this in my life.

> I've lived with diabetes for 27 years and I've been on pumps for 25.

The pens are just a vial and a syringe combined. If you’ve given yourself injections, using the pen is straightforward.

> Foolishly, I did not bring the backup-of-the-backup. I never have!

For anyone not familiar with diabetes management, these two sentences are the failure that happened here.

Insulin pump failures are very rare, but the only way they can be dangerous is if you choose not to bring your medicine with you. Lantus (the thing OP is prescribed but does not treat as necessary medication) is given to diabetics for this exact situation. The pen is a bit bigger than a Sharpie. One of them can keep you alive for a week or more. There is no valid reason not to keep it with your other insulin.

The lesson here has nothing whatsoever to do with insulin pump brands. OP will never get a pump that can’t fail but thankfully “what to do when a pump fails” has been an elegantly solved problem for many, many years.

> This happens with every pump in one way or another to avoid getting air instead of insulin

The tandem doesn't allow you to finish priming before it's used 10u. Even if you know it's fine, and can see drops of insulin coming out immediately, you've got to wait until it reaches 10u first. I took the author's complaint to be more about that.

I've only had my battery die a couple of times, and I use a fresh line every cartridge, so I've only found it mildy annoying. If you're American and often reusing them, I could see it being more grating.

I truly do not understand how one could have T1D for 27 years and still be alive with this attitude. Don't get my wrong, I'm happy she is! And maybe that's just my own limited experience of managing my foster daughter's T1D for the past year talking but... Man, this year has been a rude education in how many ways all of these necessary-for-life pieces of equipment and medications can go wrong and how easy it is to get into a life-threatening situation.

Going more than 30 minutes from home without extras of everything (Dexcom, glucometer, fast-acting, long-acting, glucose tabs, glucagon) is completely unthinkable.

> Somewhere in the back of my head, something is always screaming: it's fucking stupid that I have to do this at all!!

I think it all comes down to this attitude. Interesting with the self awareness in other parts of the article.

I too get frustrated when I feel vulnerable and helpless. What helps me is reflecting on all the capabilities i actually have. They might feel less bitter and dependent if they try injecting manually. Then a pump isn't a life necessity, but a convenience.

Priorities. Sigh.

I just don’t understand how Americans put up with this shit. I live in a country that only has private healthcare, and the idea that you can be insured and also that an emergency room visit can be expensive rather than specifically what the insurance is meant to cover is nuts.

This part is basically a matter of degree. If I have full coverage on my car and total it in a single car accident, insurance will replace it, but I have to cover the deductable ($500-$2000 usually).

If I go to the emergency room, health insurance will cover it, but there's a deductable of like $50-$500 depending on the plan. That's a lot of money if you could have dealt with your issue at urgent care (usually half the deductable) or later at a GP. It's not a lot of money compared to what the ER bills your insurance for most things. Having doctors, nurses, pharmacy, and support staff onsite 24/7 with backups on call in order to handle 'anything', proof of ability to pay not required, is exensive and the costs get placed on the users that can pay.

That's not to say it's not shit. My favorite is when you go to urgent care, but they can't do whatever it is you need done, so they send you to the ER, and you get to pay the deductable for urgent care, then the deductable for the ER, then get the mailer for your insurance 'did you know, you can go to urgent care instead of the ER?' ... My next favorite is when you show up to urgent care at 10 am and they tell you they're all booked for the day.

But, I don't know what we're supposed to do if we don't like it. Refusing to participate doesn't make the system better. Half of the country votes for a party that's unwilling to make things better; the other half votes for a party that's might try once a generation. The only hope we have is to qualify for Medicare and make it to Medicare age, and live somewhere where there's enough Medicare accepting doctors to take care of things at that age.

the author admits to not even asking for the pump to be sent directly to her.

the author admits to even ignoring the internet advice to call support, then gets mad that she wasted insulin while doing so

advocating for yourself is not being mean

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.

> 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.

> I've been pretty honest over the years that I value having an insulin pump, but that I also hate the manufacturers and designers of every pump I've ever used. If you introduced me to any person who has ever designed an insulin pump I've used, I would probably punch them in the face and cuss them out in front of their children.

Hahaha hilarious joke.

> I've lived with diabetes for 27 years and I've been on pumps for 25. I have spent a quarter of a century relying on machines to keep me alive. It has never failed on me before.

Really feel this hatred is uncalled for if this is the first true failure the author has had.

> It's incredible that I've been able to do this, and it's incredible that it never occurred to me to plan for a situation where the entire pump would fucking break.

Lesson learned!

> If I don't write what I've learned here, one of those hideously irritating diabetics who goes on Reddit and argues about everything from the perspective of Perfect, Unerring Care will send me an email criticizing me. Fuck you, if that's you. If you were even thinking of emailing me to criticize me about what I did, I hope you die. Of diabetes.

Gonna send an email after posting this!

> It's very difficult to have a normal attitude about a tech company that keeps you alive, but it's even harder to be normal about it when the tech fucking breaks. Even if we lived in a utopia, with universal healthcare, universal pharmacy medication searches, and helpful customer service reps who send backup pumps directly to my location on the backs of swift eagles... even then, I don't think it's possible to live without resentment for the technology keeping you alive.

I do not understand this attitude at all. So you go like 25 years without your pump failing and this one failure gives you a complete 180 stance on medical tech? Lucky for you there is always the option to go back on pens! 1000 times less points of failure.

I look forward to the future posts on the Dexcom G7. Now that thing is a piece of shit. Especially frustrating when I never had problems with the G6. Dexcom managed to make their product worse and is forcing us all to "upgrade". There's already a class action lawsuit against it. Can't wait to receive my $20 from it in 5 years!