8 ms·

What doctors and researchers get wrong about diabetes is that pin-pricks and injections are not even remotely bad. I don't know a single diabetic who cares abou

by RPLong 8y ago

What doctors and researchers get wrong about diabetes is that pin-pricks and injections are not even remotely bad. I don't know a single diabetic who cares about injections and blood sugar tests. You get used to that within the first week of diagnosis. No, the unpleasant part of being diabetic is having to live every second of your life as an act of weighing how what you're currently doing is going to affect your blood sugar levels an hour for now: - Have I been sitting in this chair too long? - Have I not been sitting down enough this morning? - Have I been drinking enough water? - Did I just drink too much water? - I haven't been to the bathroom in two hours; does this mean I'm screwed? - If I eat a piece of toast after dinner, will I be able to have sex with my wife without going hypoglycemic? - I'd like to go hiking, but it's hot outside and my insulin might spoil, so maybe I'll walk around the block instead. - I just plan on going to the grocery store for 20 minutes; do I need to bring insulin in case there's a traffic jam on the way home? Etc., etc. Pharmaceutical companies can't solve the real lifestyle problems associated with diabetes short of inventing an actual cure.

fitnessrunner 8y ago
Type 1 for 30ish years... I wish there was some way to move this comment to the top of this thread. You pretty much hit the nail on the head. Yeah, injections suck, but the real sinister issue is the constant attention it requires, and if you don't pay attention, you can get in trouble (hospital, death) real fast. Longer term, lose limbs, eyesight, etc.
helsinki 8y ago
T1 here. This is a perfect summary. I received my Dexcom G6 yesterday. If you dont have a CGM and insulin pump, I highly recommend both.
- RPLong 8y ago
  One thing I'm worried about WRT switching to a pump is the impact of heat on insulin. I can't have a Humalog pen exposed to 80+ degree heat for more than a few minutes without it losing efficacy. I live in Texas. What will stop the summer heat from cooking all the insulin in my pump's reservoir while I'm walking down the street? Do you have any thoughts on this? I'd love to have more flexibility.
  - GiorgioG 8y ago
    Our 7 year old lays on top of his pump regularly when he sleeps and despite it making the entire pump way hotter than 80 degrees, it’s never caused any efficacy issues. He’s played soccer for 3+ hours in the 95+ degree heat (4 days in a row), no problems with the insulin on board.
    - bigtunacan 8y ago
      From the context of your message, I think I correctly understood you to mean you have had no problems with the insulin that is in the insulin pump's infusion set reservoir? Trying to help and I don't want to come off as rude, so please forgive me in advance. The term "insulin on board" has a very specific meaning and it refers to the fast acting insulin that is currently in one's body and still active. So let us say you are using fast-acting insulin, like Humalog, and it stays active in your body for 2.5 hours. You take 3 units of insulin at Noon 1 hour later you take another 3 units of insulin 1 hour later you take another 4 units of insulin At 2:00 you have 10 units of insulin on board At 2:30 you have 7 units of insulin on board At 4:30 you no longer have any insulin on board
      - GiorgioG 8y ago
        You're right - I'm sorry, I shouldn't have been so careless with my words. What I meant was, we've never had a problem with the insulin in his pump's cartridge/reservoir even in 90+ degree heat for 3+ hours with him running and sweating.
  - bigtunacan 8y ago
    Insulin efficacy isn't really an issue until you are about 90+ F, anything below 90 and it will take long enough to breakdown the proteins that you would already be due to swap your infusion set (every 3 to 4 days). But being in Texas, you might exceed 90F at which point, yeah it could go bad really fast. Not a big deal though, just get a cooling wallet for your pump; FRIO seems to be the popular choice https://www.frioinsulincoolingcase.com/frio-pump-wallet.html https://www.frioinsulincoolingcase.com/frio-pump-wallet.html
- coldpie 8y ago
  Grats on the Dexcom. It's a game changer. I don't use a pump myself for a variety of reasons (chiefly, my current routine is working well, no reason to change it), but I dearly miss the Dexcom when I have to go without for some reason.
- taternuts 8y ago
  My friend is T1 and uses a Dexcom as well, it seems like a way better solution. He recently got a diabetic alert dog too which seemed to give him a lot more piece of mind, although I realize that's a pretty expensive route and not for everyone.
zahreeley 8y ago
Vegetables & fruits are the ultimate medicine for all disease. Have you seen elephants having such diseases?
daeken 8y ago
> I don't know a single diabetic who cares about injections and blood sugar tests. I'm diabetic and the sole reason I don't check my blood sugar (unless I think something is drastically out of whack) is that it takes me upwards of 30 minutes to do a finger prick for testing. My anxiety skyrockets and nothing I do can tell me that it's not going to be excruciating. Most of the time I end up having my wife do it, which isn't a fun process for either of us. It's not the worst thing, but it's deeply, deeply unpleasant for me. Come at me with a 10ga needle, I won't flinch; come at me with a 30ga lancet and I'll be a mess. I'm going to be switching to a CGM purely for this reason.
- longer_arms 8y ago
  Have you tried alternative test site meters? I test on my forearm and it doesn't hurt and mostly takes a couple of quick lanceting. I use Freestyle lite test meter with a multiclix lancet. No finger damage, no mess, just have to have forearms visible. Easier for your wife to do too since lancet placement is trivial (anywhere on forearms). Hope the CGM works for you ofc
- sodosopa 8y ago
  I have a strong aversion to needles but I’ve been a type 1 diabetic for many years. I use an older Medtronic pump and want to move to a CGM soon My checks take about 5-10 seconds but I can see where after a while it can make you hesitant.
- lolc 8y ago
  Have you tried using the intermediate segments of the finger instead of the fingertips? It makes a big difference for me in pain perception. Drawing blood is a bit harder sometimes but I still prefer that over having to prick the sensitive tips. (Not that I fret over it. Luckily I lost that within a week of doing regular measurements.) Hospital staff is surprised when they see where I draw blood but so far none told me to change it. I still let them prick the fingertips so they don't have to change their routine.
  - rzzzt 8y ago
    The suggestion in the manual of the lancet I used was to use the fingers on the less dexterous hand. It seems logical (but may not actually be correct) that you have more precise/sensitive feeling in the dominant pair.
coldpie 8y ago
Yeah. I've been T1D since I was 13 (now 30) and I can't even imagine what it's like to live without it. It's literally a constant thread in my mind, every waking moment, and a few times a week while I sleep. I carry glucose tablets and a few granola bars on me, and you're right about carrying insulin. Am I likely to eat on this trip, or can I leave it at home so it doesn't spoil? I once failed to bring my insulin on an international trip. That was a doozy! Making injections easier would be nice, sure. Not having to worry about finding a bathroom or bleeding into my pants or whatever. But that's a real minor set of issues compared to the constant attentiveness that managing it well requires.
- bigtunacan 8y ago
  Also a T1D here. I once had my test meter go bad on an international trip; by the time I realized it wasn't working I was on a deserted island that was an about a 4-hour boat ride away from the nearest pharmacy, which was closed. Talk about stress levels going through the roof!
  - lloyddobbler 8y ago
    > Talk about stress levels going through the roof! (Which, of course, is EXACTLY what you want to have happen when you have no way of monitoring your BG.) Yikes!
    - bigtunacan 8y ago
      LOL, yeah. Looking back on it now, five years later, it's a bit humorous. I went and found the resort manager and explained the whole situation to her. She didn't know anything about diabetes, so she really wasn't understanding how severe the situation was. Resort Manager - "Won't you be ok for a week until the boat makes a trip back to the mainland for supplies?" Me - "No, I'll be dead before then." Resort Manager - "Is it really that serious? Do you know how much it will cost? It's really going to cost a lot of money; you will have to pay for the gas, the boat crew, and the pharmacy isn't even open on Saturdays. This is really going to cost a LOT of money." Me - "I don't care how much it costs. I'm a dead man without it. Go wake up the boat crew and call the emergency line for the pharmacy and have someone come in."
detaro 8y ago
From what I've seen with friends, CGMs seemed to be a pretty big lifestyle improvement through technology.
jayalpha 8y ago
"What doctors and researchers get wrong about diabetes is that pin-pricks and injections are not even remotely bad. I don't know a single diabetic who cares about injections and blood sugar tests. You get used to that within the first week of diagnosis." Dude, you don't know many diabetics then. Companies spend billions of dollars to solve this problem.
- thejohnconway 8y ago
  I’m Type 1 and I agree with him. Injections are not a problem worth solving for me. It’s the constant mental grind of tight-rope walking blood sugar through balancing food, insulin, exercise, and random body events (that you never quite figure out) that is the problem. Blood sugar testing is an annoyance, but the main problem is not the actual test, but the inadequacy if testing your sugars a few times a day as a method of control. There we do have solutions coming out; the latest generation of continuous blood glucose monitors are life-changingly good.
  - pimeys 8y ago
    I've been using Dexcom now for two years, and it finally helped me to really understand certain weird things about my blood glucose, after having a type1 diabetes over 20 years. a) The morning peak is a dawn phenomenon. Solved with a higher basal setting 3 hours before waking up. b) Going to sleep with a 100 mg/dl and waking up in the middle of the night with a glucose of 300 mg/dl? Usually because eating fatty and heavy food for dinner. Depending on your meal, a 150% temporary basal or if looping, letting the oref1 super multi bolus to take care of it. c) Having a cold and suddenly there is no way to keep your glucose levels down? I use AndroidAPS's profile multipliers here. Last time I was sick I set the multiplier to 160%, which means more basal, more insulin for carbs and correction. d) Doing sports? Get the insulin on board settings right in AndroidAPS, and try to do exercise only when the IoB is back to the base level. Use 0% TBR if needed. And still I have an alarm almost every night for a hypo/hyper. Soon closing my loop and letting the automation take care of the nightly surprises. It used to work great with my Accu-Chek Combo pump until the pump broke. Now hopefully getting a Dana RS soon, so I can automate lots of things for the software to take care of.
longer_arms 8y ago
Insulin is pretty temperature stable these days: http://link.springer.com/content/pdf/10.1007%2FBF00277482.pdf http://link.springer.com/content/pdf/10.1007%2FBF00277482.pd...
1123581321 8y ago
I am type 1.5 and disagree with both parts of your post. While learning to use them routinely only takes a few days, needles and lancets do bother people for anxiety reasons, but also for physiological reasons. Lancet areas develop callouses, can have blood flow issues and in more advanced stages of diabetics can risk infections/damage. Injection sites go bad over time or appear to; right now I am dealing with an issue where I think some of my preferred injection sites are becoming less effective, but I can’t really tell, which is preoccupying. I don’t think research into alleviating the need to use needles and lancets is getting anything wrong just because it solves a need not every diabetic has. Secondly, I think your description of diabetes is overblown. If you’re checking BGL frequently with a CGM, then you have a good understanding of what will happen in routine situations. If you’re not, you aren’t going to sweat 30 minutes in the car or the delta between the carbs from dinner plus toast and physical activity (I do like the humble-brag here, though!) because you don’t know what’s going on anyway. Hypoglycemia has the advantage of being treated with glucose tablets, which don’t spoil and can be stashed everywhere. Moderate activity and water intake are important but not going to swing your BGL wildly like a bottle of soda or an intense workout. This disease can be a hypochondriac’s dream and I think that teaching other diabetics to be so preoccupied is dangerous to them because it increases the temptation to give up on the daily routines that actually make a difference.
- RPLong 8y ago
  teaching other diabetics to be so preoccupied is dangerous to them because it increases the temptation to give up on the daily routines ^^ Sorry, this makes no sense at all. Maintaining a routine is one way to express a preoccupation with diabetes management!
  - 1123581321 8y ago
    I mean: there are a few things you need to do each day to manage diabetes. These are important. What you don’t need to do is worry about it between those times. If you convince someone they need to do too much to manage the disease, they’re more likely to give up on the whole thing.
booleandilemma 8y ago
I’m not diabetic but just reading your comment is making me feel queasy and on edge.
paulcole 8y ago
I just stopped caring and accept that I have to die sometime. I have good A1C control, test regularly, and am very physically active. But thinking about it constantly just drives me nuts so I go about my life and if it's what kills me, so be it. And if in the (hopefully far) future my physical health is compromised to the point that I don't want to deal with it anymore, I'm at peace with that, too.
- coldpie 8y ago
  Don't feel required to answer, but I'm curious, does that mean you just run high (>150mg/dL) all the time? I find being low (<70mg/dL) or high makes me feel physically poor, and keeping in that narrow range is what I mean when I say it takes constant attention.
  - paulcole 8y ago
    No. I rarely go over 150-160. I'm usually around 100 on waking and am between 70-140 for 90+% of the day. Most common lows are during/after a long run or when I overcorrect for a high.
deven88 8y ago
Me and my wife are T1D since childhood. I have started with reusable glass syringe with bovine insulin then Insulin pen and recently switched to pump. Living in developing county and having diabetes is nightmare. Constant mood changes due to sugar imbalance and highly chaotic environment of developing county make the things more difficult. People and even doctors are not able to understand about this decease related situations. Since last 5 years, we are not able to decide whether we should have baby or not. One of my friend was telling me that I am not participating much in adventure activities I smiled and told that for me, living life itself is far more adventurous.
x3n0ph3n3 8y ago
> I don't know a single diabetic who cares about injections and blood sugar tests. You get used to that within the first week of diagnosis. Tell that to my wife who has had diabetes for 4 years.
tlrobinson 8y ago
This seems like the perfect job for a machine. Is there a reason CGMs and insulin pumps aren't more common? Cost?
- thejohnconway 8y ago
  Cost seems to be the major factor. I believe the NHS doesn’t supply them for this reason. That said, CGMs cost about £150 a month. Worth sacrificing just about any optional expense for I would say.
cs02rm0 8y ago
What doctors and researchers get wrong about diabetes is that pin-pricks and injections are not even remotely bad. I don't know a single diabetic who cares about injections and blood sugar tests. You get used to that within the first week of diagnosis. My father in law seems fine with the act of injecting itself, but he's very private about his health issues and seems very self conscious about injecting. I've known him about 15 years and he'll always leave the room to inject even in his own home with only family around. I'd imagine this might help someone like him in a small way.
bojackstorkman 8y ago
By happenstance I have spent about half of my life living with people with T1D and this post echos pretty much exactly what I have heard over the past decade or two. A lot of non-t1d folks seem to fixate on the needle/lancet parts of management because it is visceral, but have difficulty grasping the huge amount of stress and responsibility around managing time, activity, boluses, diet etc. For example, managing stress can itself be stressful. Some people with t1d have sever anxiety, and a panic attack can trigger a cortisol dump into their bloodstream, which in turn causes a significant spike in blood sugar. I once saw a panic attack spike a person from 80mg/dl to over 400 mg/dl with no eating, no pump/infusion site failure, or incorrect basal rate. Also, concerns about your ability to engage in sexual activity with regard to blood glucose is the furthest thing from a humble brag. It is an issue for many, many diabetics and is often a point of embarassment. Kudos for mentioning it! Recently my partner (23yrs with t1d) and I made accounts on the twitter-like site called Beyond Type 1 which has actually been a really great community of diabetics (and diabetic-adjacent people like me) sharing their concerns and advice and we have both loved it.
dfraser992 8y ago
Ditto for me. I don't mind the insulin pens or the blood tests - it is the constant monitoring / science experiment aspect of all this that is exhausting. Even if I had a phone app that graphed my levels for the past 24 hours, counted carbs for me, and calculated insulin doses, I'd still find it all irritating and would slack off on the 24 hr a day 'mindfulness' it takes. Even then, I am still going to die earlier than a non-diabetic. So why should I kill myself for 50 years going to the n-th degree when n-1 or n-2 is ok enough? That is my justification for keeping h1bc below 8 or 9, never mind below 7. All the effort into projects like tech for snorting insulin is just surface stuff, much like all the glitz in the IT world that accomplishes superficial stuff (but takes lots of VC money). I am reminded of the CueCat... 30 years ago, they said there'd be a cure by now. I am still waiting and am going to die before it ever happens. Snortable insulin is sexy, but not that useful in the grand scheme of things.
Balgair 8y ago
As an aside, you ever see those 'Cash for Strips' signs on the side of the road[0]? Those are typically a person who's insurance is so lacking that test strips end up as a financial burden. Typically, well insured diabetics will partner with someone who is less well off and share strips. The test strips from a good insurance provider are typically much more than enough to cover the time period that they are prescribed for (exp: you are given 1000/mo, but only use 300/mo). It's a fascinating side of life, somewhat like the deaf community, that exists in plain sight and yet is invisible to anyone outside of that particular community. Sociologists should investigate that partnering process if they have not already, despite the uproar that insurance companies would make over these kind acts. [0] https://www.gannett-cdn.com/-mm-/519e70b3dd198a728f9efe74a59e76efcbe622d3/c=4-0-3260-2448/local/-/media/2017/02/17/PAGroup/YorkDailyRecord/636229321133537402-IMG-0354.JPG?width=534&height=401&fit=crop https://www.gannett-cdn.com/-mm-/519e70b3dd198a728f9efe74a59...
westoncb 8y ago
Completely agree. Pin-pricks and injections aren't even on my radar; they're nothing at all next to the problems of needing to maintain at least some level of vigilance at near all times. Additionally, needing to constantly have plans for carrying around carbs, insulin, monitoring equipment, ensuring various prescriptions have refills and there will be pharmacies around, that the event you're attending has things you can eat, etc.—and still having periodic interruptions to whatever you're engaged in from lows or highs, or just needing to stop and check because it feels like you might be dropping low—that's the terrible stuff. I have a hard time imagining how someone could even compare the small bother of injections to the above. I suppose if you're morbidly fearful of needles or something, but otherwise I'd be very confused at how a mild quick pain could match up to having your life dominated by this constant attention sink. EDIT: I should also add: I got the FreeStyle Libre a couple months ago (it's effectively a CGM—or at least far far closer to the CGM side on a spectrum from finger-prick monitor to CGM), and it does help significantly with the attention problem. And, I'm guessing how much the attention problem affects you depends on your personal standards for acceptable BG levels. I don't like how I feel when it's above 140 or so, and it's supposed to negatively effect cognitive performance to be too high, so my standards are very high (I've now had two doctors say I had the best A1c scores they'd seen). Probably also depends on your inclination for analytical introspection / self-monitoring. I would bet I'd have ranked high on that even before the diabetes diagnosis, off-the charts high for several years after, and now, after spending years working on meditation etc.—moderately high.

by RPLong 8y ago

fitnessrunner 8y ago

Type 1 for 30ish years... I wish there was some way to move this comment to the top of this thread. You pretty much hit the nail on the head. Yeah, injections suck, but the real sinister issue is the constant attention it requires, and if you don't pay attention, you can get in trouble (hospital, death) real fast. Longer term, lose limbs, eyesight, etc.

helsinki 8y ago

T1 here. This is a perfect summary. I received my Dexcom G6 yesterday. If you dont have a CGM and insulin pump, I highly recommend both.

RPLong 8y ago
One thing I'm worried about WRT switching to a pump is the impact of heat on insulin. I can't have a Humalog pen exposed to 80+ degree heat for more than a few minutes without it losing efficacy. I live in Texas. What will stop the summer heat from cooking all the insulin in my pump's reservoir while I'm walking down the street? Do you have any thoughts on this? I'd love to have more flexibility.
- GiorgioG 8y ago
  Our 7 year old lays on top of his pump regularly when he sleeps and despite it making the entire pump way hotter than 80 degrees, it’s never caused any efficacy issues. He’s played soccer for 3+ hours in the 95+ degree heat (4 days in a row), no problems with the insulin on board.
  - bigtunacan 8y ago
    From the context of your message, I think I correctly understood you to mean you have had no problems with the insulin that is in the insulin pump's infusion set reservoir? Trying to help and I don't want to come off as rude, so please forgive me in advance. The term "insulin on board" has a very specific meaning and it refers to the fast acting insulin that is currently in one's body and still active. So let us say you are using fast-acting insulin, like Humalog, and it stays active in your body for 2.5 hours. You take 3 units of insulin at Noon 1 hour later you take another 3 units of insulin 1 hour later you take another 4 units of insulin At 2:00 you have 10 units of insulin on board At 2:30 you have 7 units of insulin on board At 4:30 you no longer have any insulin on board
    - GiorgioG 8y ago
      You're right - I'm sorry, I shouldn't have been so careless with my words. What I meant was, we've never had a problem with the insulin in his pump's cartridge/reservoir even in 90+ degree heat for 3+ hours with him running and sweating.
- bigtunacan 8y ago
  Insulin efficacy isn't really an issue until you are about 90+ F, anything below 90 and it will take long enough to breakdown the proteins that you would already be due to swap your infusion set (every 3 to 4 days). But being in Texas, you might exceed 90F at which point, yeah it could go bad really fast. Not a big deal though, just get a cooling wallet for your pump; FRIO seems to be the popular choice https://www.frioinsulincoolingcase.com/frio-pump-wallet.html https://www.frioinsulincoolingcase.com/frio-pump-wallet.html
coldpie 8y ago
Grats on the Dexcom. It's a game changer. I don't use a pump myself for a variety of reasons (chiefly, my current routine is working well, no reason to change it), but I dearly miss the Dexcom when I have to go without for some reason.
taternuts 8y ago
My friend is T1 and uses a Dexcom as well, it seems like a way better solution. He recently got a diabetic alert dog too which seemed to give him a lot more piece of mind, although I realize that's a pretty expensive route and not for everyone.

zahreeley 8y ago

Vegetables & fruits are the ultimate medicine for all disease. Have you seen elephants having such diseases?

daeken 8y ago

> I don't know a single diabetic who cares about injections and blood sugar tests. I'm diabetic and the sole reason I don't check my blood sugar (unless I think something is drastically out of whack) is that it takes me upwards of 30 minutes to do a finger prick for testing. My anxiety skyrockets and nothing I do can tell me that it's not going to be excruciating. Most of the time I end up having my wife do it, which isn't a fun process for either of us. It's not the worst thing, but it's deeply, deeply unpleasant for me. Come at me with a 10ga needle, I won't flinch; come at me with a 30ga lancet and I'll be a mess. I'm going to be switching to a CGM purely for this reason.

longer_arms 8y ago
Have you tried alternative test site meters? I test on my forearm and it doesn't hurt and mostly takes a couple of quick lanceting. I use Freestyle lite test meter with a multiclix lancet. No finger damage, no mess, just have to have forearms visible. Easier for your wife to do too since lancet placement is trivial (anywhere on forearms). Hope the CGM works for you ofc
sodosopa 8y ago
I have a strong aversion to needles but I’ve been a type 1 diabetic for many years. I use an older Medtronic pump and want to move to a CGM soon My checks take about 5-10 seconds but I can see where after a while it can make you hesitant.
lolc 8y ago
Have you tried using the intermediate segments of the finger instead of the fingertips? It makes a big difference for me in pain perception. Drawing blood is a bit harder sometimes but I still prefer that over having to prick the sensitive tips. (Not that I fret over it. Luckily I lost that within a week of doing regular measurements.) Hospital staff is surprised when they see where I draw blood but so far none told me to change it. I still let them prick the fingertips so they don't have to change their routine.
- rzzzt 8y ago
  The suggestion in the manual of the lancet I used was to use the fingers on the less dexterous hand. It seems logical (but may not actually be correct) that you have more precise/sensitive feeling in the dominant pair.

coldpie 8y ago

Yeah. I've been T1D since I was 13 (now 30) and I can't even imagine what it's like to live without it. It's literally a constant thread in my mind, every waking moment, and a few times a week while I sleep. I carry glucose tablets and a few granola bars on me, and you're right about carrying insulin. Am I likely to eat on this trip, or can I leave it at home so it doesn't spoil? I once failed to bring my insulin on an international trip. That was a doozy! Making injections easier would be nice, sure. Not having to worry about finding a bathroom or bleeding into my pants or whatever. But that's a real minor set of issues compared to the constant attentiveness that managing it well requires.

bigtunacan 8y ago
Also a T1D here. I once had my test meter go bad on an international trip; by the time I realized it wasn't working I was on a deserted island that was an about a 4-hour boat ride away from the nearest pharmacy, which was closed. Talk about stress levels going through the roof!
- lloyddobbler 8y ago
  > Talk about stress levels going through the roof! (Which, of course, is EXACTLY what you want to have happen when you have no way of monitoring your BG.) Yikes!
  - bigtunacan 8y ago
    LOL, yeah. Looking back on it now, five years later, it's a bit humorous. I went and found the resort manager and explained the whole situation to her. She didn't know anything about diabetes, so she really wasn't understanding how severe the situation was. Resort Manager - "Won't you be ok for a week until the boat makes a trip back to the mainland for supplies?" Me - "No, I'll be dead before then." Resort Manager - "Is it really that serious? Do you know how much it will cost? It's really going to cost a lot of money; you will have to pay for the gas, the boat crew, and the pharmacy isn't even open on Saturdays. This is really going to cost a LOT of money." Me - "I don't care how much it costs. I'm a dead man without it. Go wake up the boat crew and call the emergency line for the pharmacy and have someone come in."

detaro 8y ago

From what I've seen with friends, CGMs seemed to be a pretty big lifestyle improvement through technology.

jayalpha 8y ago

"What doctors and researchers get wrong about diabetes is that pin-pricks and injections are not even remotely bad. I don't know a single diabetic who cares about injections and blood sugar tests. You get used to that within the first week of diagnosis." Dude, you don't know many diabetics then. Companies spend billions of dollars to solve this problem.

thejohnconway 8y ago
I’m Type 1 and I agree with him. Injections are not a problem worth solving for me. It’s the constant mental grind of tight-rope walking blood sugar through balancing food, insulin, exercise, and random body events (that you never quite figure out) that is the problem. Blood sugar testing is an annoyance, but the main problem is not the actual test, but the inadequacy if testing your sugars a few times a day as a method of control. There we do have solutions coming out; the latest generation of continuous blood glucose monitors are life-changingly good.
- pimeys 8y ago
  I've been using Dexcom now for two years, and it finally helped me to really understand certain weird things about my blood glucose, after having a type1 diabetes over 20 years. a) The morning peak is a dawn phenomenon. Solved with a higher basal setting 3 hours before waking up. b) Going to sleep with a 100 mg/dl and waking up in the middle of the night with a glucose of 300 mg/dl? Usually because eating fatty and heavy food for dinner. Depending on your meal, a 150% temporary basal or if looping, letting the oref1 super multi bolus to take care of it. c) Having a cold and suddenly there is no way to keep your glucose levels down? I use AndroidAPS's profile multipliers here. Last time I was sick I set the multiplier to 160%, which means more basal, more insulin for carbs and correction. d) Doing sports? Get the insulin on board settings right in AndroidAPS, and try to do exercise only when the IoB is back to the base level. Use 0% TBR if needed. And still I have an alarm almost every night for a hypo/hyper. Soon closing my loop and letting the automation take care of the nightly surprises. It used to work great with my Accu-Chek Combo pump until the pump broke. Now hopefully getting a Dana RS soon, so I can automate lots of things for the software to take care of.

longer_arms 8y ago

Insulin is pretty temperature stable these days: http://link.springer.com/content/pdf/10.1007%2FBF00277482.pdf http://link.springer.com/content/pdf/10.1007%2FBF00277482.pd...

1123581321 8y ago

I am type 1.5 and disagree with both parts of your post. While learning to use them routinely only takes a few days, needles and lancets do bother people for anxiety reasons, but also for physiological reasons. Lancet areas develop callouses, can have blood flow issues and in more advanced stages of diabetics can risk infections/damage. Injection sites go bad over time or appear to; right now I am dealing with an issue where I think some of my preferred injection sites are becoming less effective, but I can’t really tell, which is preoccupying. I don’t think research into alleviating the need to use needles and lancets is getting anything wrong just because it solves a need not every diabetic has. Secondly, I think your description of diabetes is overblown. If you’re checking BGL frequently with a CGM, then you have a good understanding of what will happen in routine situations. If you’re not, you aren’t going to sweat 30 minutes in the car or the delta between the carbs from dinner plus toast and physical activity (I do like the humble-brag here, though!) because you don’t know what’s going on anyway. Hypoglycemia has the advantage of being treated with glucose tablets, which don’t spoil and can be stashed everywhere. Moderate activity and water intake are important but not going to swing your BGL wildly like a bottle of soda or an intense workout. This disease can be a hypochondriac’s dream and I think that teaching other diabetics to be so preoccupied is dangerous to them because it increases the temptation to give up on the daily routines that actually make a difference.

RPLong 8y ago
teaching other diabetics to be so preoccupied is dangerous to them because it increases the temptation to give up on the daily routines ^^ Sorry, this makes no sense at all. Maintaining a routine is one way to express a preoccupation with diabetes management!
- 1123581321 8y ago
  I mean: there are a few things you need to do each day to manage diabetes. These are important. What you don’t need to do is worry about it between those times. If you convince someone they need to do too much to manage the disease, they’re more likely to give up on the whole thing.

booleandilemma 8y ago

I’m not diabetic but just reading your comment is making me feel queasy and on edge.

paulcole 8y ago

I just stopped caring and accept that I have to die sometime. I have good A1C control, test regularly, and am very physically active. But thinking about it constantly just drives me nuts so I go about my life and if it's what kills me, so be it. And if in the (hopefully far) future my physical health is compromised to the point that I don't want to deal with it anymore, I'm at peace with that, too.

coldpie 8y ago
Don't feel required to answer, but I'm curious, does that mean you just run high (>150mg/dL) all the time? I find being low (<70mg/dL) or high makes me feel physically poor, and keeping in that narrow range is what I mean when I say it takes constant attention.
- paulcole 8y ago
  No. I rarely go over 150-160. I'm usually around 100 on waking and am between 70-140 for 90+% of the day. Most common lows are during/after a long run or when I overcorrect for a high.

deven88 8y ago

Me and my wife are T1D since childhood. I have started with reusable glass syringe with bovine insulin then Insulin pen and recently switched to pump. Living in developing county and having diabetes is nightmare. Constant mood changes due to sugar imbalance and highly chaotic environment of developing county make the things more difficult. People and even doctors are not able to understand about this decease related situations. Since last 5 years, we are not able to decide whether we should have baby or not. One of my friend was telling me that I am not participating much in adventure activities I smiled and told that for me, living life itself is far more adventurous.

x3n0ph3n3 8y ago

> I don't know a single diabetic who cares about injections and blood sugar tests. You get used to that within the first week of diagnosis. Tell that to my wife who has had diabetes for 4 years.

tlrobinson 8y ago

This seems like the perfect job for a machine. Is there a reason CGMs and insulin pumps aren't more common? Cost?

thejohnconway 8y ago
Cost seems to be the major factor. I believe the NHS doesn’t supply them for this reason. That said, CGMs cost about £150 a month. Worth sacrificing just about any optional expense for I would say.

cs02rm0 8y ago

bojackstorkman 8y ago

By happenstance I have spent about half of my life living with people with T1D and this post echos pretty much exactly what I have heard over the past decade or two. A lot of non-t1d folks seem to fixate on the needle/lancet parts of management because it is visceral, but have difficulty grasping the huge amount of stress and responsibility around managing time, activity, boluses, diet etc. For example, managing stress can itself be stressful. Some people with t1d have sever anxiety, and a panic attack can trigger a cortisol dump into their bloodstream, which in turn causes a significant spike in blood sugar. I once saw a panic attack spike a person from 80mg/dl to over 400 mg/dl with no eating, no pump/infusion site failure, or incorrect basal rate. Also, concerns about your ability to engage in sexual activity with regard to blood glucose is the furthest thing from a humble brag. It is an issue for many, many diabetics and is often a point of embarassment. Kudos for mentioning it! Recently my partner (23yrs with t1d) and I made accounts on the twitter-like site called Beyond Type 1 which has actually been a really great community of diabetics (and diabetic-adjacent people like me) sharing their concerns and advice and we have both loved it.

dfraser992 8y ago

Ditto for me. I don't mind the insulin pens or the blood tests - it is the constant monitoring / science experiment aspect of all this that is exhausting. Even if I had a phone app that graphed my levels for the past 24 hours, counted carbs for me, and calculated insulin doses, I'd still find it all irritating and would slack off on the 24 hr a day 'mindfulness' it takes. Even then, I am still going to die earlier than a non-diabetic. So why should I kill myself for 50 years going to the n-th degree when n-1 or n-2 is ok enough? That is my justification for keeping h1bc below 8 or 9, never mind below 7. All the effort into projects like tech for snorting insulin is just surface stuff, much like all the glitz in the IT world that accomplishes superficial stuff (but takes lots of VC money). I am reminded of the CueCat... 30 years ago, they said there'd be a cure by now. I am still waiting and am going to die before it ever happens. Snortable insulin is sexy, but not that useful in the grand scheme of things.

Balgair 8y ago

As an aside, you ever see those 'Cash for Strips' signs on the side of the road[0]? Those are typically a person who's insurance is so lacking that test strips end up as a financial burden. Typically, well insured diabetics will partner with someone who is less well off and share strips. The test strips from a good insurance provider are typically much more than enough to cover the time period that they are prescribed for (exp: you are given 1000/mo, but only use 300/mo). It's a fascinating side of life, somewhat like the deaf community, that exists in plain sight and yet is invisible to anyone outside of that particular community. Sociologists should investigate that partnering process if they have not already, despite the uproar that insurance companies would make over these kind acts. [0] https://www.gannett-cdn.com/-mm-/519e70b3dd198a728f9efe74a59e76efcbe622d3/c=4-0-3260-2448/local/-/media/2017/02/17/PAGroup/YorkDailyRecord/636229321133537402-IMG-0354.JPG?width=534&height=401&fit=crop https://www.gannett-cdn.com/-mm-/519e70b3dd198a728f9efe74a59...

westoncb 8y ago

Completely agree. Pin-pricks and injections aren't even on my radar; they're nothing at all next to the problems of needing to maintain at least some level of vigilance at near all times. Additionally, needing to constantly have plans for carrying around carbs, insulin, monitoring equipment, ensuring various prescriptions have refills and there will be pharmacies around, that the event you're attending has things you can eat, etc.—and still having periodic interruptions to whatever you're engaged in from lows or highs, or just needing to stop and check because it feels like you might be dropping low—that's the terrible stuff. I have a hard time imagining how someone could even compare the small bother of injections to the above. I suppose if you're morbidly fearful of needles or something, but otherwise I'd be very confused at how a mild quick pain could match up to having your life dominated by this constant attention sink. EDIT: I should also add: I got the FreeStyle Libre a couple months ago (it's effectively a CGM—or at least far far closer to the CGM side on a spectrum from finger-prick monitor to CGM), and it does help significantly with the attention problem. And, I'm guessing how much the attention problem affects you depends on your personal standards for acceptable BG levels. I don't like how I feel when it's above 140 or so, and it's supposed to negatively effect cognitive performance to be too high, so my standards are very high (I've now had two doctors say I had the best A1c scores they'd seen). Probably also depends on your inclination for analytical introspection / self-monitoring. I would bet I'd have ranked high on that even before the diabetes diagnosis, off-the charts high for several years after, and now, after spending years working on meditation etc.—moderately high.