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.
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.)
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.
I have a fear that my CPAP machine will die one day while I'm away from home, such as vacation overseas or during a business trip. I literally no longer can sleep without it, I have anatomical sleep apnea (perfectly fit), but it's quite severe (79 AHI).
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.
If you haven't already, you should try making an appointment with a sleep doctor. Mine was able to write me a new prescription without a new sleep study, just a regular office visit. Make those insurance companies pay for what you are entitled to!
Happened to me once. Water chamber broke in checked luggage. I slept poorly for a few days far from home.
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.
The US (as well as other countries) has weird hangups because there's not a lot of granularity in prescription rules and insurance won't cover things unless they require a prescription.
So patients and doctors fight to have things continue to be restricted so that their workplace insurance will pay for it.
... much like we have the sketchy telehealth services out there, some online CPAP shops will have 'prescription renewal' services available for like $50-100.
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).
Reading this, my takeaway was less about the pump and more about how every part of the medical system is disconnected from every other part.
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.
One issue here which is obvious to me is that access to insulin should not be gated on paperwork. I can walk into any pharmacy in Canada and say "I'm diabetic and need insulin" and the pharmacist will sell it to me. They'll ask questions of course since this is not the usual path but my doctor's office being open will have no influence on whether I get it -- just on whether it's a 5 minute process or a 15 minute process, and potentially whether I have to pay myself or have it covered by insurance.
True but that is the old Human insulin which is in some way not a drug the way the current modified insulins are. Thanks for giving people this heads up.
This is good info. I was going to say you can't in Indiana (where I used to live) but it turns out they changed their mind and it went into effect in 2021. Now (at least according to a current search) all states allow for at least a few forms of over the counter insulin (not the modern analogs, but it's better than nothing!)
Is that true for every type and format? You can walk into walmart and get regular and NPH insulin over the counter, no questions asked. Newer ones require a Rx.
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
> you cant even buy kidney friendly cat food without an expensive Rx from a vet and tons of controls
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.
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.
I think it's mostly emergent. I can even point to a plausible mechanism, which is that if you think of an organization as a network of people and how they are connected together, you can think of "responsibility" as something that arcs through an organization like electricity and burns out whatever it courses through, prompting the creation of alternatives to avoid getting zapped the same way in the future.
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.
the correct answer here is that they are all accountable. there is not some fixed quantity of blame to divvy up: each malfunctioning leg is responsible for the outcome.
I think the GP's point is that accountability/responsibility isn't a substance, it doesn't have to be conserved like energy or momentum. I agree with them.
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.
Potentially. However, depending on the nature of the interaction, abandonment is equally a concern for a provider. If I'm treating or begin care of a hypoglycemic patient (and I'm not saying that in this case, such a thing has happened), then legally, I can be found guilty of abandonment if I don't transfer care to a higher level provider or conclude the course of treatment or intervention planned. I can't just say "I can't do anything for you, you're on your own."
I think we are saying the same thing. There is a line that triggers obligation and liability. If the location is abigious or the liability is extremely high, then there is incentive to error on the side of avoidance.
This might mean not taking a patient or class of patients into care.
>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?
"You can't justify hanging us all from the overpass" is the magic of the system.
The pump manufacturer is at fault a few different ways. They have a responsibility to make pumps that don’t break, and they should probably issue a recall. They shouldn’t rely on the availability of a product they don’t supply as a backup unless they can guarantee somehow that the patient always has access. Their staff should ask where you want the thing shipped to and include options like receiving the replacement at a Fedex or UPS location. Their staff should be trained to ask “are you traveling or otherwise away from your home address?” And finally they should train staff on follow-up questions for a patient’s plan and confirm the patient has enough insulin on-hand to cover executing the plan.
Why is any of that their responsibility? Their staff did ask if they would be fine without the new pump and op said yes. They were fine. They could have gone to a hospital. They could have gone to Walmart and bought some insulin syringes for their supply
This is literally the reason I'm still on multiple daily injections (MDI). I'm sympathetic to the author, I spent 50+ years without Type 1, and a few with it.
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.
I'm having almost the exact same day as you today - except for the past 50+ years I have been t1d, and I'm back on MDI. I quit using a pump about 15 years ago. And it definitely improved my QoL just by not having to deal with all the insurance hassles. Removing that stress alone I think will extend my life longer than using a pump will.
> 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.
I always carry ice packs and a yeti cooler. I have some other carry rigs, but 99/100 times if you see me out and about, that's me: cowboy hat, wayfarers, and yeti cooler.
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.
The best high-GI food I have found is Welch's fruit snacks. They are superior to glucose tablets: (1) Can be swallowed whole quickly and easily, or dissolved by saliva. (2) More concentrated, so you can pocket or pack more glucose in less space. (3) Can be compressed in a pocket or backpack without turning to powder that leaks everywhere. A packet of fruit snacks is 17 g of carbohydrate, which is small enough to catch moderate crashes and large enough when doubled to catch major crashes.
I don’t have diabetes, but I’ve heard from people with T1 that Welch’s work well for the reasons you mentioned.
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?
Ideally, you're looking for something that spikes blood sugar fast (i.e. high glycemic index). This is why e.g. Skittles/Sour Patch Kids/fruit snacks (mainly the kind that don't... actually have any fruit, lol) are a go-to for type 1s.
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.
I'm on a pump but always take backup insulin pens and needles when I travel, so that I can switch to MDI if needed. My QOL with a pump is so much better than it was with a decade+ of MDI.
I'm trying to convince myself. But then it's just one more thing that the medical community is gatekeeping (you didn't book your followup appointment in time, so you're treated as if you're no longer in life-threatening danger of hyperglycemia is a reality for me, because I have a hard time with medical appts).
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.
Yes, I used to carry scripts for insulin and needles in my wallet just in case. NY implemented all bbut mandatoery eprescribe so I feel I have to use a national chain so my script can be seen if I'm traveling. And yes the notion a script for Insulin can be stale is truly insane. Of course regular checkups are best especially with being insulin dependent, but with 2 million T1D just in the USA this is just bad for everyone.
I think I'm actually going to go talk to my congressperson/senator/anybody who will listen. It's such an insult, that I have to go to an endo, who in my case probably knows some technical ephemera better than I do, but has done absolutely nothing to help keep me alive besides write prescriptions.
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.
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.
Unfortunately this is my broad experience of medical systems across multiple countries and, weirdly, it strikes me as one of the few problems that isn't caused by rent-seeking in the healthcare industry, or at least only very distantly (minus the "don't want to remortgage my house to go to emergency" element, obviously).
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.
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 dexcom was supposed to be a closed loop cgm plus pump. It rarely cuts insulin delivery on low blood sugar, or it does it way too late to matter .
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.
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.
nope, just when i eat food. This morning i ate breakfast at 11:00, pretty much flat until then, mild slope upwards from 8am to 9am, but it only went from 6.2 to 6.7 then stabilised
For my wife, when on lantus and novolog ( no pump ) the overnights were always high blood sugars . The pumps definitely help , but in retrospect she also stopped eating gluten around the same time. The no gluten diet helped a lot .
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?
Hey, this happened to me about two years ago! Forgot I was wearing my pump and walked into the ocean. Oops. I was on a Greek island during Easter weekend - the worst possible time and way to need emergency medical care.
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.
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 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.
Some people are sure they have a magic case of a chronic disease that can’t be helped by anyone’s shared experiences. I used to think that about myself. It’s usually not true.
Anyway, I thought the curse was funny and I’m glad 1-2 of the other replies got that.
I have Cystic Fibrosis, with a lot of the same issues as COVID infections (scarred lungs and lost capacity), as well as additional fun things like a scarred pancreas (so I have both diabetes as well as difficulty digesting food without supplements). I could write a book with all of the unsolicited "advice" I've gotten over the years.
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.
Sounds like the author is talking exactly about them, a diabetic who could offer some useful feedback.
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.
Just picture the smiling model in the advertisement; blithely and confidently referring to the device’s crisp screen while standing on the first-class deck of the 14 day cruise through Margaritaville.
The postscript in the blog post specifically wishes death on any diabetic who tries to point this out "from the perspective of Perfect, Unerring Care" via email: that's the "some percent crazy assholes" from https://www.smbc-comics.com/comic/2013-04-07. I think it's fair to post more appropriate commentary in a public forum, where it's aimed at audiences who don't already know everything the author does.
One thing I learned when I switched from manual injections to an insulin pump: the pump does NOT eliminate the need to carry injection pens, needles and a glucose meter with me when I leave my house unless I know I can get back quickly in case of an emergency. I always need to think about the worst case scenario, especially when travelling overseas.
This is a very large fear of mine but we've been lucky to have extra supplies in almost every T1D category. People seem to forget that most diabetic supplies in the US are gated by insurance who make it extremely difficult to create a small stash. We bring extra ( most that i had to cash pay for ) insulin, long acting , CGM's, multiple blood glucose monitors. We also recently were able to bring my sons old X2 with us on vacation. So we have backups for everything.
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've been a T1 for 35 years. I use 20 year old insulin pumps so that I can have more control over them. I'm able to run open source software to talk to the Dexcom and the pump to control the insulin output, and tune it exactly how I want it. I started with OpenAPS, then Loop, then iAPS. I probably owe my life to these projects.
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.
I had an X2 (and before that, a couple of Minimed pumps), then I switched to the Omnipod. The Omnipod is a disposable pump you swap out every 3 days, so less of an issue.
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.
Omnipod for the win. But, yeah, I have a bunch of disposable needles in my kit as a backup.
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...
I'm fortunate to have the income to support buying backups when I had insurance issues. During the Dexcom G6/G7 switchover and the switch to the Omnipod, I had just filled a bunch of G7s but the Omnipod didn't support it yet, so I ended up having to buy G6s out of pocket. Even with coupons from the manufacturer, it was still costing me $200/month.
When I lived there (or visit family), a Costco Gold card and store pharmacy visit can help a lot - it was around $150/mo for G6 last September. I'll switch over to G7 some time this summer. The Costco plan more than pays for itself using the built-in rewards program and rx discounts if you're paying out-of-pocket.
Also on the Omnipod, and I also always travel with both extra pods AND extra insulin pens (basal and bolus insulin). That way I can switch back to MDI if for whatever reason my pods fail or I can't use them.
Bizarre intro to the blog. Been a pump user for 20 years, forever grateful to the technology that allowed me to live a pretty unrestricted life. Sympathy of course to anyone who's had it harder than I have ofc
Some random thoughts on this situation which I have been in as well.
- 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.
This is why I was uninterested in joining a clinical trial for one in the 80s. But to travel w/o backup blood sugar testing and spare insulin and needles is suicidal. For any T1D here, walmart has dirt cheap glucose packs in tubs or 8 and bottles of 50 for very cheep.
Traveling without a quick acting pen and a long acting pen would never occur to me. Even if I’m traveling for a weekend I do (and take finger prick strips and tester). It means not having to worry about pump or sensor failures, which for me generally happen during exactly the fun activities I go on vacation to enjoy.
> The woman on the other end of the line asked me, "Do you have a plan to continue your insulin pump therapy?" I said, "I guess. I will have to call my doctor and get my prescription for long-acting insulin moved to a pharmacy in Santa Fe." I don't know what she would have done if I'd said "no."
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.
Today in the US in 2026, if you're blindly trusting fully enshitified corporations to keep you alive, I assure you that you're not going to have to worry about broken insulin pumps for very long.
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.
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.
It honestly might be helpful if we framed more conversations that way, when talking about the creeping dependencies on tech firms that fill our lives.
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.
First, let's acknowledge that when the actions of some people lead to endangering a human life, it's natural to be angry about it.
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.
It's more than alright to be outraged, that's very different than it being alright to wish harm. That shouldn't negate anything else said in the conversation, but it's also just as much of the conversation to call it out.
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.
I don’t think it’s appropriate to wish ill on other people. When writing I think it’s just as important to consider the impact of your words as it is to express your ideas and emotions. These sorts of words can make people feel unsafe, and in extreme situations can inspire similar feelings in other people with similar problems. Maybe someone that might take more direct action than a blogpost.
I understand different regions have different communication style, but the murder rate in the US is too high for us to joke about these sorts of things.
I disagree, but I appreciate your perspective. I think it’s fairly clear that the author is using exaggerated speech to make a point and convey their feelings. The reason I mentioned regional differences is I often find myself having this disagreement with my west coast compatriots.
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”.
We are kind, but not nice. I generally find the west coast is nice, but not kind. Everyone in the south knows what bless your heart means, so it’s not really a veiled insult.
I dont know if you are reading this but you should see if your insurance will cover an omnipod. it is a million times better than the insulin pump you are using
stories like this is the only reason why i still on pen. traveling a lot and all i bring with me are 6 pens, 3 pack dexcom, blood strips and a ton of needles. but yeah feel with you!
One other thing to try if you find yourself in a "need meds away from home" situation: Ask a local pharmacist.
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 also don’t need your doctor to write a prescription. They can dispense on their own authority. Scheduled drugs probably have made this more complicated. But if you’re looking for something that can’t get you high when abused it’s worth a shot.
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.
I’m also a type 1 and I force myself to use pens every few months so I don’t get jumped like this. We need implantable insulin pumps again so bad. Also fuck tandem, I’ve moved to Omnipod (which has its own issues, but better than tandem).
Pro tip: get a Rx for your pens sent to a national pharmacy that your insurance supports, but don't fill it. That way, if you have this issue while traveling, you can just walk into a pharmacy and walk out in half an hour with what you need
Pro-pro tip for T1d's: If you relocate (or visit) the EU and get a Rx - IMMEDIATELY FILL it once as soon as you get it - otherwise it could be invalidated after 15 days - and it won't be valid when you try to use it the first time.
i have multiple family members with t1d and having experienced their stories i expected this blog to be filled with anti-patient practises, planned obsolesence and the like. however, i was relieved to read that's not the case.
Just use insulin pens or even just vials + syringes to manage your BG? I'm T1D as well with a 5.7 a1c. You don't "need" a pump and in some ways pumps make you ignorant of your own disease, like people who "need" GPS to navigate their own towns.
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 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.
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.
It means the exact opposite. It is like when the tow truck operator asked if you are stopped in a safe location. If you say you have a backup to the pump, then they know there is negligible risk. Its why they asked.
>I don't think it's possible to live without resentment for the technology keeping you alive.
> 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.
I wonder if it would be possible for a business to exist that was like super double ultra premium T1 diabetes support. Maybe it's really expensive and not many people can afford it, at least at first, but it'd be like you can call up an on-call desk any time, day or night, 24x7x365, and immediately talk to somebody who can pull up your full situation and history and do anything necessary to fix any possible problem. Get anything you need shipped to you anywhere next-day, get you premium service at any local pharmacies or hospitals, already set up to do exactly what you need before you even get there, sweet-talk the tiny local mom-and-pop pharmacy, produce all of the right papers and work the right angles at the huge national chain pharmacy, track down the one that actually has or can do what you need, etc. What would it be like if you were able to actually throw enough money at the problem to create a perfect worry-free experience for at least some people.
It sounds possible, but insurance probably won’t cover it. So this super double ultra premium T1 support will probably be only for the people rich enough to not need insurance.
> I know that going to an emergency room would have cost me an insane amount of money
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.
> 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.
If vulnerable individuals don't "...put up with this shit," they get sick and die. To understand this, you have to understand that there isn't usually an alternative.
I think OP means more why politics hasn't changed this. Even at state level there's plenty of stuff that can be done about this but seemingly no one cares enough.
type 1 diabetes is not influenced by diet, lifestyle or exercise which you could have known if you had read the first few paragraphs of the blog you're commenting about
i'm sympathetic to her health concerns (obviously) but the blog post is about type 1 and your girlfriend seems to have type 2. although they have similar names, their causes are unrelated.
from my perspective you are responding to a blog about the complications of a terrible, incurable illness with "you need more exercise" which has no impact on type 1.
for completeness: yes, diet and exercise does change the amount of insulin a type 1 diabetic needs, but it does not "get better" or "go away".
the type 1 diabetics i know actually live very healthy lives by necessity because they need to constantly keep track of their carb consumption so they can adjust the insulin amount.
I’ve called my father’s insulin pump customer support number once before and the medical advice they gave us would have endangered his life if I had carried it out (according to his GP, whom we called after to confirm).
"I will probably also be meaner to everyone who gets me on the phone in the future during an emergency. I was trying specifically to not do that, but I suppose it's helpful to be mean when your medical equipment is failing."
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.)
> 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.
Not sure why this is got on the front page here. This is a just rant / vent more than anything else.
> 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!
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’.
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.
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.
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.
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.
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.
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?
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.
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.
No worries though. As we say in Greek, "όλα εδώ πληρώνονται". Loosely translated, what goes around, comes around.
Of course not. You need yoga for that.
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?
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.
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.
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...
- 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.
We panicked quite a bit before we finally figured out we just had to set the connected phone to India Standard Time.
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.
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").
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.
I understand different regions have different communication style, but the murder rate in the US is too high for us to joke about these sorts of things.
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.
> 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.
My family is unfortunately rife with Type 1. Even appearing later in life with no connection to diet/activity. It's a genetic problem.
I empathize with people with Type 2, but it's a different disease.
from my perspective you are responding to a blog about the complications of a terrible, incurable illness with "you need more exercise" which has no impact on type 1.
for completeness: yes, diet and exercise does change the amount of insulin a type 1 diabetic needs, but it does not "get better" or "go away".
the type 1 diabetics i know actually live very healthy lives by necessity because they need to constantly keep track of their carb consumption so they can adjust the insulin amount.
This is type one diabetes you illiterate sack of shit
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!