Just sharing

We have good neighbors, and we’re grateful. But it’s funny how a small, not-at-all intended as hurtful or dismissive comment can stick. One asked me recently about my daughter’s tech (she had her Dexcom on one arm and her Omnipod on the other, so it was more visible than usual). I told him, and he nodded knowingly. “Someone at work has that, but his is like a pager. Isn’t it so great? It totally does everything for her. It’s like she doesn’t have to worry at all, or do anything, the tech just takes care of it!”

I said something mild about how management is still pretty hand-on, but yes, definitely better than so many finger sticks and injections. He heard me, and acknowledged it wasn’t as simple as not having the disease at all, “but still.”

We’re neighbors, and like I said, good neighbors. But not close enough that I really wanted to go into exactly what it’s like to have a child with T1D, or (as best as I can describe) what it’s like for my daughter, who has to actually live it 24/7/365.

We’re awfully proud of how we’ve kept her life as full, happy, and “normal” as possible, and I always try to walk on the sunny side of the street, but that kindly-intended comment still stunk. I don’t have a point, especially, other than to thank everyone here for getting it, and being so supportive.

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I’ve always been one to give benefit of the doubt - sometimes to excess. It could be that when your neighbor’s co-worker told them about their tech they said what a great job it does of keeping their numbers in line - suggesting if not outright saying (for the sake of expediency) that it takes away much of the self care - and your neighbor was repeating what they took in. I’m sure the way I explain my pump/CGM interaction could leave people thinking the same thing. On the one hand we tend to complain when people don’t understand our condition. At the same time, I may have made observations about treatments for conditions my friends have, based on what I’ve heard or read, and been just as off base. Maybe it’s the internet but people seem to think people should be equally knowledgeable about things that apply to them, and that’s just not the case. So I give Bennett of the doubt (as my friends do when I mess up) and of they’re interested in learning more I share. A starting place could be by responding "Is not really that simple but thank you. On the other hand if you don’t want to go into the challenges and details, why get upset. I’ve found it helpful to own my own reactions and responses - I don’t know if that’s the reason but I tend to shut things down pretty quickly. And the way I look at it, if I’m going to let something bother me I need to fix it; conversely if I don’t want to fix it I just let it go.

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hi @srozelle a super-smart lady once helped me understand this. I was very upset over a particular “unfairness” and at the time, it really pinched and I was really, very upset. So this person turns and askes me, “Joe, do you want to be right, or do you want to be happy”? Now, not every single thing comes down to it, but for matters such as a neighbor’s lack of empathy, and with the world saying things about their grandma’s diabetes or their cat’s diabetes, it does come
to mind that I either have to teach the entire world, or I have to accept that NO ONE gets it except for us. I love to teach, but I can’t do that. Also, 25 years later, I can’t remember the details of this thing that hurt me anymore but I do vividly remember that lesson.

The only other thing is that it is your daughter. Someone implying that she has it “easy because the tech does it for you” and I get into my defensive stance and I certainly understand the emotion. My son has a peanut allergy and he had asthma as a young child. I would have (and still would) gladly taken those for him to give him an easier life, and one less thing to worry about. When a parent says “oh you can’t tell me I can’t send peanut butter to school, that is all little Johnny eats” and I am ready for a steel cage match to the death. We are wired that way. we are parents! Anyway my strategy when ANYBODY starts talking diabetes is to smile and nod, because unless they want to learn they can’t be taught, and I deserve to be happy!. Cheers!

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@srozelle I don’t use a pump or cgm, but I am pretty open about my diabetes with people I meet. I try to use it as a sort of teaching moment. Sometimes it gets under my skin how uneducated people are about it, but then I remember that for the first 15 years of my life, I had no clue either. As unfortunate as it is until you know about it and what every day is like, we don’t really think about it. I would say that as hard as it can be, it is never really worth letting it get to you. Chalk it up to them being uneducated and let it go. If you are ever in the mood, educate them a little.
I have only ever been angry once and this is the only time I ever remembered what someone said to me. A group of people from my high school went to a summer camp together for health care careers. I wasn’t close with all of them and so one girl didn’t know. She asked me why I was eating a salad instead of the sandwiches a lot of other people were eating. I mentioned that I had type one diabetes and was trying to watch my blood sugar and carb intake while I was there and she said “Oh!! (She lifted her glass of water and said) here’s to everyone with a working pancreas” needless to say that I rolled my eyes. Thankfully others around me knew already and told her to shove it. I probably would have just let it slide and been angry about it later! I was there for other things and to learn and I just chalked it up to her being uneducated and went on enjoying my time there! I was there to enjoy myself and learn about health care careers and do hands-on simulations of hospitals and fun science experiments. I did not let it ruin my day and I just carried on enjoying my day. I actually laugh about it now.
Please don’t let it get to you. You sound like you are trying to give her an enjoyable, happy, healthy, “normal” life and that is what she deserves. That is what you deserve as well. I was diagnosed at 15 and my parents don’t always understand what it is like all the time(because I have always taken care of myself), but they try and they educate themselves, and that is all that I can ask of them. I want them to be happy as well and they get upset sometimes when people say inconsiderate things and I tell them that I didn’t care or it didn’t make me upset, so it shouldn’t make them upset either.

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I took multiple daily injections for 29 years. I started off with pork insulin and a meter that took a huge drop of blood and 30 seconds to register a reading that could be off by 20%. At the time, I was taught about how much better off I was than the people of the previous generation, who didn’t have BG meters and had to guess after the fact based on urinary ketone strips. And the generation before that didn’t even have insulin, so there was nothing anyone could do except watch patients waste away and die over the course of a few painful months. I understood how lucky I was, but it was still a lot of work, knowledge, and planning to keep my health on track. Now I’ve got a CGM and closed loop pump, and boy has it been a big step forward. My A1C dropped from around 7.3 to around 6.4. I can trust the pump to make real-time adjustments if my bolus calculations are a little off. I was visiting friends and they had popcorn out and it hit me that I could just have some popcorn between meals and the pump would take care of it. If I’m not sure about my blood sugar, I can instantly get an accurate reading and a graph of the last few hours instead of having to prick my callused fingers again. If I’m at a wedding or something and there’s an extended multi-course meal, I can bolus at each stage with the touch of a few buttons. No need for an extra needle, no need to excuse myself to the bathroom, no need to wrestle with getting formalwear on and off in the confines of a bathroom stall, no need to remember and guess at every thing I’ve eaten and will likely eat soon. If I’m traveling, I can let the pump take care of the basal rate without having to figure out how to handle my NPH shots while flying over several time zones.

Being diabetic is still a lot. And I have to be vigilant lest the pump fail or the CGM go off track. But it’s still a big weight off my shoulders from what it was a decade ago. The tech has really advanced, especially in the last few years.

Your daughter still has a life-threatening condition. She still has to be careful and mindful about food and activities. It’s still effort and stress and expense. And it’s a lot to put on you as a parent, too.

But I absolutely have marveled to non-diabetic friends about how much of a difference the technological advances have made. And I am very glad that you and your daughter have technology that can shoulder a big chunk of the burden. You’ve got it easier than my parents and I did when I was a kid. Less risk, better insulin, better tools, less need to meticulously measure and calculate every thing she eats and does, less need to stick to a rigid daily plan. I’m sorry for all you still have to deal with, but I’m very appreciative of the marvels of modern technology.

As has been said, it’s likely your neighbor heard something similar to the top of my message from his coworker and was just parroting that. When you told him that it wasn’t that easy, he acknowledged it.

So, yes. He doesn’t understand because he hasn’t lived it. He could have been more sensitive about the stress and burden your family bears. But a reliable CGM and a closed loop pump is an amazing step forward that we’ve been dreaming about for decades.

Heck, I majored in biomechanical engineering at MIT in the late 90s. Unfortunately, due to other health issues, I had to go on indefinite medical leave. But I was there, on campus, when a researcher developed the material necessary to make a CGM even possible, and I immediately started talking to a biology major in my dorm about sketching out designs for a closed loop pump and started researching materials we could use. I was so excited to make that my career. It took fully 20 years to get from that point to the first available pump that could adjust basal rate to CGM readings. I wish I could have been part of it. But I am so appreciative that we finally got here. And it’ll keep getting better. (Until someday maybe we’ll have a cure…)

It’s important not to get carried away in either direction, though. It’s too easy to slip into the trap of letting the pump do more than it’s designed to handle. I’ve known irresponsible diabetics who don’t want to do the work or acknowledge the reality, and would rather just binge eat and not worry about the consequences. And unfortunately the advances in technology have made it easier to just wave it away and say the pump will handle it all. I hope your neighbor’s coworker isn’t in that category.

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Thanks, all. I am sure you’re right that he was probably repeating his colleague’s enthusiasm, and that I probably wouldn’t have given it a second thought if we’d been talking about me, rather than about my kid. You’re an insightful bunch.

I share the enthusiasm for the radical difference medical advances have made — my hat is off to all the posters here who managed so well for so long with so much less. You are all awesome and inspirational and I thank you for sharing what you’ve learned.

(And yes, I do hope his colleague isn’t leaning too heavily on the pump technology. A Tandem trade show rep once told us that you could actually completely not bolus, and Control IQ would take care of it for you! I’m no endocrinologist, and I’ve never worked in Tandem’s R&D, but I’m going to go out on a limb and say that wouldn’t be wise.)

Anyway, I didn’t mean my OP to come off sounding as upset as it must have based on your reactions. I wasn’t blaming my neighbor, and I’m not nursing any kind of grudge about it. I’m under no illusions that anyone who doesn’t have a reason to know about this should. I was completely ignorant about it until my daughter was diagnosed, and goodness knows there are innumerable things I know nothing about that I really should. I did exercise my judgment about how much education he was interested in, and I think I delivered that.

It’s frankly because I don’t expect anyone else to get it that I shared here. ‘Cause I know you do, and that helps. It was a thanks for being here. :slightly_smiling_face:

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@srozelle YES, I’ve seen you living this admirable life. Keep up your good ways, and continue to let what you perceive to be non-constructive comments, even when the speaker was trying to be helpful, just roll off your back. I imagine that your daughter will do likewise.

I try not to compare my diabetes management style with another person’s style unless I see that person showing me really positive attitude and results - then I may try to emulate. Over the years, many misinformed people who learn that I’m living with diabetes have showered me with horror stories of “uncle” and try to put me in that category.

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Wait, what?

I mean, sure. The pump will increase basal to compensate. But you’ll still be sky high for hours. And the pump will set off alarms about that. That’s one of the things pump training materials go out of their way to emphasize whenever they discuss Control IQ (or Medtronic auto mode). You absolutely have to enter carb or bolus amounts when you eat. You cannot just count on basal adjustments to take care of that. I hope someone reported that guy to Tandem. He’s putting lives in danger (and putting the company in potential legal trouble).

Anyway, I’m glad to hear you’re not upset with your neighbor. Plain text is hard sometimes. I’m sorry I misread you and guessed wrong on what would have been filled in by non-verbal cues (tone of voice, facial expression, etc).

Good that you educated him a bit. And great that you’re finding this community so valuable.

I was a member of JDRF back before websites existed. By the time this place was up and running, I had the hang of things and was more focused on other life issues. I came here a couple of weeks ago when Google told me that there was a thread with some information about a setting on the pump that wasn’t really covered in the user manual or Tandem website materials. (It turns out “total daily insulin” is just a way to calibrate the pump algorithm’s expectations in the first day or two before it has more specific usage data.) But it’s been good to be here. Small supportive communities like this are valuable places, I’ve found.

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I love showing off my tech, but I’m careful to say, “All of this technology doesn’t really make my job any easier; I still have to manage everything 24/7, but the results are better!” :blush:

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Actually @srozelle , good diabetologists, and pump manufacturers, advise observing glucose levels using only set basal Profiles and Patterns, without bolus infusions. This applies to pumps with and without AIDs - it is the only way to validate programmed basal rates.

The process, printed with worksheets, is outlined in the MiniMed Paradigm User manual I received in 2004 and also included on the Medtronic website. Last evening in my reading, I came across an article entitled “Basal Rate Testing” which has worksheets and information that I use at all season changes - link below. What is important, is that all AIDs, such as Basal IQ [BIQ], Control IQ [CIQ] must be disabled - turned off - before beginning the rate testing procedure.
chrome-extension://gphandlahdpffmccakmbngmbjnjiiahp/https://stmichaelshospital.com/pdf/programs/diabetes/basal-rate-testing.pdf

Yeah, fasting basal-rate testing was not what the rep had in mind, unfortunately. They were very explicitly saying you could just eat, and let the magic happen.

@srozelle

humans make mistakes. that one is a whopper as well as “off label” and misleading and etc. Breaks every rule in the current sales rep manual. When it sounds wrong and smells wrong and looks wrong… it may be wrong! =)

Indeed.
I’m presuming that person was just naively sharing what they thought was right, rather than actively misinforming patients and creating liability for the company. I mean, you never know, I guess, but one of my friends always says you should “never ascribe to malice what can be explained by stupidity.” Sounds right to me!

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@srozelle , I misunderstood.

I agree with @Joe that avoiding or failing to enter carbohydrates and bolus appropriately is “off label” use. Although in theory, Control IQ [CIQ] could meet the challenge if one “forgets” to bolus when eating… Although I suspect for me, my BGL would spend more time out-of-range. A few limitations come to mind:

  1. Automatic CIQ bolus feature is not activated until BGL exceeds 160 mg/dl;
  2. CIQ bolus corrections are calculated, when in normal mode, to bring BGL to 120 [not the 110 pre-meal “Target”] and then the calculated bolus is reduced by 40%;
  3. In sleep mode, bolus corrections are a null-set;
  4. When in exercise mode, bolus corrections attempt to reduce BGL to 140 mg/dl, and the calculated dose is reduced by 40%.

Relying on CIQ to maintain effective management may work for someone on a very low carb regimen.

For myself, my baseline basal is 2 units per hour, and Control IQ can raise it to 3. That’s an increase of 1 unit per hour. A dinner bolus is usually around 10 units, so instead of getting that needed increase to meet the food as it digests, I’d be getting the dose over the course of 10 hours. Control IQ can give me an additional correction bolus once per hour, but it only gives 60% of the needed amount, and only when I’m already running high. If I remain high, it gives me an alarm to let me know that I need to do something (check cannula, test BG to make sure the sensor is right, etc). If I forgot to bolus for dinner, I’d be running high for hours, and the pump would not be happy about it. If I did that on a regular basis, my A1C would be a disaster.

Hello, I wish I had had a mother like you after getting T1D at 14 months old in 1963. My father got T1D a year before I was born. My mother says I started wanting water at amounts not normal for any child. She started suspecting something was wrong and after changing my pee soaked cloth diaper, she wrung it out and got a sample then checked my urine with my fathers test kit. I tested positive at 4+ and the keytone pill tested the darkest purple meaning I was in dire straits. She called my doctor hysterical and was told to bring me to the ER immediately. I was admitted into the local Catholic hospital ran by nun’s. After they got my sugars under control my parents came to the hospital to get me. They were standing in the long hallway leading to the pediatric section, and an older nun and 2 younger nun’s on either side of her all dressed in full habits came carrying me down the corridor and when they reached my parents she handed me off to my mother and the older nun looked at my mother and said, don’t let him die, then the nun’s turned and walked away. My mother nearly collapsed and my father caught her and I and we left. My mother had issues through out my life due to my diabetes. She would always introduce me to people as, this is Billy my diabetic son, to which they would show pity to her for having a child with such a horrible disease. There was no hiding my nemesis as I was growing up, because she had to make a production out of it constantly. She was a control freak in every aspect of my life with no independence or freedom without her involvement because remember, I was a diabetic. Life with diabetes in those days was difficult, but I’m thankful for what we had back in the day so we could at least survive. You are doing a great job from what I have read. Take pride in the fact that your daughter has you protecting her and to help her grow up to be a strong successful young lady. Diabetes is only a part of her life, but with your help and support she will be a great success.

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I’m touched, Bill, really — thank you for those very kind words!

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Thank you. If I can offer any advise to you for helping your daughter it would be to let her be independent and have freedom. I understand from experience that parents are protective especially when health issues are involved regarding their children. You have to learn to educate her but stand back and watch and let her have input and trust that she is able to make informed decisions based on your guidance. She will make mistakes, but that is a part of learning also known as experience, and you will be there to help her correct the mistakes and offer solutions for future similar issues. My life was sheltered by my mother until I turned 16 years old and at that point I rebelled so severely I should have died for various reasons but I was spared. For many years I never kept track of my sugar levels, I did take my insulin everyday and tried to maintain a constant diet but that was playing with fire. Feeling like a prisoner that was finally freed, I was married at 16 had a son, got involved with drinking alcohol, smoking stuff, and was headed for a bad place. I was living life on the edge in a self destructive manner. Then one day a person I worked with asked me if I’d be interested in working volunteer EMS. I was interested and got addicted to the adrenaline rush and joined the EMS system. I became an EMT the first 6 months of joining, I had stopped drinking, and doing other things that were not allowed, but I didn’t stop there I also joined a volunteer fire department and after getting my EMT certification, trained in the next 7 months to become a certified firefighter and vehicular extrication technician for 8 years. For the next 3 years I had gained thousands of hours of running calls, training, and working a full time job. I eventually became an EMT Intermediate and worked volunteer with EMS for 19 years and finally stopped. I felt I was indestructible however things catch up with you over time. Remember from my experiences to give her freedom and guidance, never stifle her dreams, ideas and plans. If you think there’s possible harm in a decision she wants to pursue discuss it with her and explain your concerns and make the decision together, but also make her understand that parents have the final say like, Little lady, bungy jumping is not permitted at your age 'cause I pay the insurance. It will strengthen your bond with her and hopefully keep her from the rebellion phase. Keep up the great work, you and your daughters got this.

Wow, thank you for sharing your story! It sounds like it would make a great book or movie, with such a dramatic character development arc and a happy ending — you’re an inspiration!

Don’t worry: I didn’t miss the warning about how you ended up feeling the need to rebel so strongly in the first place, or about how lucky you were not to have suffered more for some of those choices. I think we’d all do well to have a healthy appreciation for how we lucked out sometimes!

And we try really hard to give her as much independence as possible while still looking out for her. It’s a tough balance for every parent, I’m sure, regardless of the child’s particular health circumstances. Having something like T1D just ups the stakes a little. :grimacing: But both our kids know we think a parent’s job is to teach them how to become self-sufficient, contributing members of society. At least so far, they’re good with that. Here’s hoping it lasts!

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Thank you, I’ve been blessed even after being negligent and stubborn. Think of diabetes as a little monster that lives within your daughter. It sits locked in it’s cage as long as her BGL’s stay in their normal levels. She has 2 weapons to fight it when it escapes. They are insulin and sugar. The little monster sits in it’s cage and constantly plans it’s next escape. Like when she boluses her insulin before she eats and after eating she says she wants to go outside and ride her bicycle. The little monster is listening to your conversation with her and thinks; here’s my chance. Her insulin bolus didn’t take into account that exercise was going to be a spur of the moment thing, so as she’s riding her bike and playing vigorously, the little monster is picking it’s cage lock to escape hence her BGL’s start to fall. As her activity continues, it succeeds and springs from it’s cage. Your daughter and you notice the sudden BGL drop, and she uses her weapon of sugar maybe apple juice boxes or some regular soda and the battle begins to put the little monster back in it’s cage as quickly as possible. As her BGL starts to rise the monster is forced back into it’s cage and finally she wins and it’s secured into it’s cage with the lock back on with a higher BGL, but the plot for it’s next escape begins, as it wait’s. The 2 weapons she uses are, sugar for lows and insulin for highs but they are very effective. She is a super hero in her daily battle against the little monster. It sounds like y’all as parents have got your ducks in a row with your ideas on your children being raised to be independent and self sufficient, excellent job.

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