Type One for 30 Plus Years-Where did everyone go?

I think your MDI routine is fine; you’re used to it and it fits in well with your lifestyle. My question to you is, how do you remember all those shots? Do you ever question whether you really took the injection or not? And then you’re faced with missing a dose completely or a double dose, neither good outcomes. One of the best things about the pump is its consistent memory.

Great question for me since I was kind of a reluctant adapter for the same reasons. The big difference is that with Lantus you’ve got a continuous basal that essentially gives you a single rate of release all day, but your metabolism isn’t really as constant as that. With a pump you can have different rates that conform to what your actual needs are. For instance I have a pretty stubborn and significant dawn phenomenon, so I have a pretty high rate that kicks in around 3am, then another starting around 7 that backs off from that, and another for post-lunch, and another for evenings when I seem to generate a bit of indigenous insulin, etc etc. That may seem over-nuanced for what you need–and it takes some baseline testing to figure out–but it also means you can set temporary basal rates in anticipation of exercise or a big dinner party or the like, shut it off temporarily when you’re having a hypo and so on. So it’s definitely useful. And @Terry4’s questions are useful to think about (I did a lot of those things on MDI).

Downsides include “having this thing in/on my body all the time” which can indeed be irksome. I’ve gotten better at instinctively avoiding things that yank my set out (usually caused by some interaction with clothing) but it still happens periodically. Finding places to affix said thing is, I think, more of an issue for me than just having it on though. There are places that are easy to reach with an injector pen that are much harder to get at when inserting an infusion set or unclipping your pump from it. And if you travel, there’s a lot more gear to tote around. Pre-pump, when I went abroad for a week I just brought enough extra pens that I could lose a couple and still get by, since they occupy little space. And needles, which are teeny. Post-pump, you need enough infusion sets to swap in a new one every 3 days, plus replacement ones in case you yank one or have an occlusion or whatever, plus insulin vials (better have an extra), plus reservoirs (also bulky and better have extras), plus batteries (some pumps are rechargeable some not), plus—gulp—what if your pump dies? Better bring a spare if you can (Medtronic will supply you with a loaner) and so forth.

On balance I’m happier with it than without it and I don’t think I’d want to go back to MDI but it wouldn’t kill me if I had to. R/NPH on the other hand… well it’s preferable to dying, but…

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Oh, and then there’s “BEEEP LOW RESERVOIR ALERT” which just went off a minute after I posted the above, sitting here at my desk at work. And oh crap because I thought I had enough to get me until 7pm tonight, but then I added a bit to my lunch bolus because I really wanted that Reuben sandwich and I know the fat’s going to give me a late afternoon spike if I don’t account for it, and I thought I’d still be good to get home in time. But Mr Minimed says I’ve only got an hour’s worth left and it’s only 2:45 and no, I don’t have any insulin in the fridge at work because the vial I was keeping ran past its use-by date, not to mention it just is a pain in the a** to go through the whole rigmarole of loading up and changing sets at my goddam workstation, so crap. NOT a situation I ever had to deal with on MDI.

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Thanks, DrBB. That’s the clearest answer I’ve ever gotten.

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Good question! I’ve had T1 for 40 years now, 10 years with pens, last 15 years or so with pump. I concur with @Terry4 and @DrBB replies. Pump advantages, in my order of importance would be: (1) fewer possibilities for (serious) mistakes; one evening I took R pen and injected what was supposed to be an N basal for the night. It took some glucagon to wake me up, this has been the only real emergency I’ve ever had with T1 so far. (2) flexible basal rates, which is very important in my case, similar to @DrBB (3) boluses can be extended over periods of time (often called dual-wave, or square-wave) - good ways to deal with protein/fat in my case. (4) convenience of being able to bolus at any time, in any situation, any number of times. Pump disadvantages, in order of importance for me would be: (1) more things can go wrong; infusion set can fail (happens about once a years for me); pump can fail (has never happened to me, but it’s not impossible) - one always has to plan a bit more. (2) more stuff to carry around when traveling - @DrBB has already commented about that. Distant (3): having something on all the time. Personally I do not find this problematic at all. I now have not one but two gadgets attached (pump + CGM sensor) - I do not mind - feels good to be a cyborg :sunglasses: In summary, I like pump better than MDI/pens, but I think both are good options.

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Hiya…where did everyone go?
I seem to only get the brief summaries nowadays. Guess I need to check settings? The stories and sharing is awesome. Really miss the old format.

Diagnosed Type 1 in 1974 at the age of 2.5 in Arizona then family moved to California. Don’'t remember too much from that time other than my Mom dragging me to UCLA for doctor appointments. I do remember the urine sticks…sorta and my Mom giving me shots. Like a couple other folks, parents sent me to Diabetes Camp (Camp Chinook - anyone remember Rocky?) of which I attended every year for about 5 years and loved it. Fantastic place for Type 1 kids!

As of today, I seem to be the only one left not on a pump or CGM. I just hate the thought of something attached to me all the time (bad enough with the phone) and while I do not feel low blood sugars too well anymore I am holding out on the CGM thing and instead test probably 6 to 10 times a day. My blood sugar average over 30 days is 117 and tends to stay around the 106 to 150 mark or so. Using Humalog and Levemir pens and constantly strive to reduce the amounts. Humalog use is 8u or less per day and Levemir is 25u at night.

Folks, I don’t cheat. At least not like some of the other examples. My “cheat” consists of low calorie, low carb frozen yogurt sweetened with fructose (slight impact, increase of Humalog to 4u from 2u). Another sorta cheat is when I have low blood sugar I may indulge in ONE of those chocolatey cupcake things although usually I just use honey sticks (natural energy, low calorie, works quickly and only need 1 or 2). It took about 2 years for my diet to become second nature. It consists mainly of low or no carb, low fat, protein and now trying to include more complex carbs (not the easiest thing for sure). I just have lost most of the desire for “bad” stuff.

I do have insulin resistance (took about 6 years to figure that one out) so new Endo put me on Invokana+Symlin. The two combined work great but I want to change the Invokana because I think it made me gain 8 pounds. The Symlin sucks too but…we shall see.

For the most part, I have no side effects or complications. Cholesterol did come back higher than usual (224) so I started taking Fish Oil, Apple Pectin and CoQ10 and brought it back down to 190. I see the Endo every 3 months or so, get the usual blood tests, and see the eye specialist once a year. Hands and feet get a little dry sometimes although not sure if that is Diabetes or daily showers/dishes/etc and just use a good lotion.

Being Type 1 sucks…for sure and it does affect how you live your life. Simple things others take for granted like being to able to just drop everything and go…camping or whatever. We have to stop, pack the stuff up THEN go (not so spontaneous).

What about you? How do you manage your diet? I saw others mention fats and the affect. Do you also do low carb too? Have you tried Invokana?

Curious minds want to know :eyeglasses:

Thanks for reading!

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40 years now since age 15 never got the hang of the test tube urine test I mean I had the kit but didn’t use it. Urinate in a plastic cup, use dropper to suck up some and put 2, 3? drops of urine in a test tube in a test tube holder. Then rinse the dropper, a small glass pipet sic. with rubber balloon on one end. The pipet had a tapered end such that each drop was the same size???. Then one had to count 5 drops of water but if one goes too fast the drops don’t drop. I mean seriously the endeavor is a literal scientific experiment. And the reason to use it was because it’s more accurate than testape. More accurate? I think I saw “trace amount” less than five times. It was 4+ or 0, mostly 4+, I was good to see a 3+. What need of accuracy? And if I had 0, I had to eat more tomorrow, what? I don’t think I ever kept a chart, well maybe once I sort of did, sort of faked a chart and listened to some medical explanation of how to make every day a series of identical routines when I’m 15 years old and spontaneity is my new normal. okay get it? That didn’t go well. Oh but sweets made me feel better. Yup. Didn’t know about BG low. Did know, eat sweets feel better. Not healthy but not dead and my prognosis was to live a while but not a normal while. But some insisted I could live a normal life sort of. Then England had a blood test meter that could be used by non physicians. And my endo was importing them. Begged my mom for cash saying it would make me healthy. I was 20 and mom kicked me out at 18 because she thought low blood sugar was illegal drug use and any help she gave me would be spent on illegal drugs. No discussion, I didn’t even know. And no, I never used illegal drugs. Mom’s job was substance abuse counseling for the army. And the unconscious low BG eyes do look just like the smoked too much pot eyes. Soooo I got the fancy new contraption and enough test strips to test, well, not very often. And this science experiment, I only performed once away from a sink. Helpful? Yes, I could tell if I was low or high. We didn’t know what cgm now tells us. My first com revelation was that I was going low after eating. I didn’t know what the funny feeling, numb mouth, confusion was because one doesn’t go low after eating. And the slowness of the non analogue insulins. The rule was, “you can’t chase a high [BG]”. If it’s high one can use the information to plan out the tomorrows of a life already starved of spontaneity. That’s what it was like for me living with type one diabetes. And I became too fat to compete in sports competitively although I’d never had fat before the diagnosis. So it was just over 20 years until I saw a doctor to get a pump and even heard of fast acting insulin in 1997 or '98.

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Say '98 and the insulin was fast, so fast that eating carbohydrates for the first time became a possibility. Except I couldn’t at first. I’d become so carbohydrates adverse. And did I mention that I never mentioned any of this. Did I mention that nobody knew I was diabetic because I didn’t tell literally anyone?

Hell of a story @AARON10! And that about your mom mistaking going low for illegal drug is just appalling. The precise opposite of getting “high” on so many levels. It’s amazing you survived to be able to tell it.

I mean a diabetic getting high? When staying healthy is so hard. a diabetic uses drugs to function it’s unthinkable to abuse drugs, to intentionally loose control of one’s mind? And run the risk of death?

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Agreed! Helluva story @AARON10! Ya know, my mom spent time accusing me of drugs. She knew about low blood sugar but with the symptoms being so various (at least for me), she would accuse me. I’ve had symptoms from the usual numb/shaky/confusion to blacking out completely but running around like I was drunk. If it wasn’t life threatening, it might be funny.

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One of my grandfathers had diabetes decades ago and he was an alcoholic. Long before testing and disposable needles. It made for some bad results including amputation.

The absolute weirdest thing along these lines that I’ve ever encountered was an episode of a cop show, I’m pretty sure it was Law & Order or one of its spinoffs, where the plot ultimately hinged on the concept that there were people, non-diabetics, who were shooting insulin as a recreational drug. Seriously??? There is of course a long list of TV shows and movies with absurd or erroneous ideas about T1, almost as long as the list of weird things people have done to get high, but you’d only have to try artificially induced hypoglycemia once to disabuse yourself of the notion there’s anything remotely enjoyable about it.

Most. Absurd. Plot. Point. EVER.

I feel exactly the same way, @Alice6 :wink:

I would much rather give myself injections than have wear a pump.

I’ve seen shows where insulin is used as a murder weapon… If I remember correctly, some guy really did try to kill his wife with insulin and managed to put her in a coma. With all your friends going into convulsions around you after “shooting up” you’d think a person would suspect something is wrong.

Claus von Bülow, right. And then there was “insulin shock therapy,” a.k.a. “Insulin coma therapy,” used to treat schizophrenia in the 40s & 50s. It turns up in the film “A Beautiful Mind,” but I first heard of it in an earlier film–“Suddenly Last Summer” maybe? Not sure. Anyway, if it comes to that, I’ll take electroshock or lobotomy every time.

Yup and no memory of it.

Hello I’m new on here ! I was diagnosed in 84. I use insulin pens because pumps and new technology is expensive in Australia and only 12% of Aussies use cgms or pumps. So I guess sadly we are even more archaic then most countries :frowning:

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Robert:

While I was only diagnosed with T1D 8 years ago at the age of 37, I am appalled at the tech found in pumps, especially. My wife just made a similar point to yours just a few weeks back: why can we discern our body fat % with a phone, but your pumps look like an early 1980s Texas Instrument toy? Obviously, insulin pumps don’t have the market phones do, but it is worth rallying to find a way to lobby manufactures. Animas (whose pumps I’ve always used and can certainly depend upon) just recently marketed their screens as being the same as many cellphones. While I am a loyal customer, perhaps they’re referring to phones of the early 2000s, 'cause I just don’t see it. No, I don’t need 64-bit tech, but would a touch screen be so difficult and costly, or an in-CGM or pump multi-day graph? (Perhaps the Dexcom CGMs have this - I have the Animas Vibe which only shows one day.) Whew…enough soapbox. But, if anyone has marketing/political talents, let’s get together and get on it!

Royden Mills

I’m here! I forgot there used to be a group for that. I just hit 32 years a few weeks ago. My family thought I had the flu (seriously? That must have been some kind of mutant flu), drinking gallons of water every day and peeing constantly. I stumbled out to the sofa in the middle of the night and collapsed, my mom found me and got me to the hospital. In and out of a coma all morning, BG was 1140. Then a bearded man leaned over my hospital bed and said, “You have diabetes, you’re going to be all right.” He looked like an angel - my first endo. Started with the Diastix and the BG strips that took 2 minutes to check BG. (Hmmm, is that 120? Or 180?) Oh well, somewhere in there…) Was told to follow the “exchange system” for the first few years, and we all know how well that worked. After high school and college I finally had the time, money and energy to start getting my act together. I don’t even want to try to remember how lousy my A1C’s were in those days. Double digits often. Got my first meter in '89, but they only paid for 2 strips/day. Anyway, good control over last 15 years or so and pumping for 13. Mild kidney disease (Stage 2 so not a big concern) and mild neuropathy, otherwise in really good shape and very thankful!

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