FUDiabetes

Why I choose not to share my Dexcom data

I never have shared my data with my family. I feel like it would get annoying. We all know how variable the glucose can be with extra activity, a miss count of carbohydrates, stress response, a late dose of mealtime insulin, and ect.

Does anyone else choose not to share?

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Nobody in my family has ever asked me to share my insulin pump and/or BG data, nor do I see any reason to share my data.

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I do via XDrip and NIghtscout. It has gotten me out of a jam more than once, even though at times the shared info can be annoying (the sky is falling! The sky is falling!). The benefits for me outweigh the annoyances.

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I think the sharing questions depends greatly on what the people you share with are going to do. With my son, we look at it to confirm alarms, and usually don’t say anything. We also don’t talk about the swings on a day to day basis, at the most once a month when he has asked for a second set of eyes on some adjustments he is thinking about. But it does help my wife and I time dinner and not confront him when his blood sugar is out of whack and it is nice being able to understand how hard things are at times and make things easier that are in our control. We also have a “deal” if he stays low for more than 2 hours and is away from the house we can call him no matter what time. So it really isn’t as intrusive as someone who would want to discuss every low or high.

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The “deal” with my spouse is a much shorter time frame, usually 20 minutes or so. As much as it might annoy me at the time (because I’m low), I am usually very grateful later in the day.

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I do not share. I think it would cause undo stress on my spouse, especially at times when there is nothing she can do to help (i.e. at work or out of town).

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I also do not share. Having said that, I can surely see the benefit of sharing, especially for T1D kids, and for adult T1Ds who live alone or are away from home.

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When I read the topic title I just assumed you meant with your healthcare provider. I can think of a million reasons why I’d prefer not to share with them. For the longest time I refused to. My new NP smooth talked her way into it then shortly later started frustrating me with a comment here and a comment there about how concerned she is with lows at my a1c of 5.5

As to sharing it with family… I can see how that could be irritating but consider yourself lucky that they’re even interested in it

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I don’t share with either family or a healthcare provider. Neither is appealing to me.

I don’t think I would have gotten very far with a partner who didn’t respect and accept my boundaries re my own diabetes. I’ll tell mine what’s up when I’m having issues, and occasionally if I seem off she’ll ask, but in general she assumes it’s my business to share with her as I see fit. Also it’s hard enough sometimes for myself not to overreact when my Dex is still alarming and I know I’ve adequately treated a low. She still is surprised by how long it takes to register—I definitely do not need concerned texts/messages when I’m off dealing with it elsewhere or whatever.

Totally different I think for kids/teens, though with teens I’d be working with a plan toward independence with it then becoming their choice if they want to keep sharing as they become adults.@chris, you seem on track for that which seems sensible.

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That is what we are hoping. We just got the notice from our healthcare provider that we no longer have access to anything on his 18th birthday, and we realize if we aren’t offering value to our son, he will shut down the access. Sure, for a few years while we are paying for college, we could probably strong arm him, but I am hoping he sees value in sharing with us, and therefore it isn’t an issue.

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Our Endo likes to see it…we give them what we have (NS data, Clarity and Tidepool), and we share with school nurse (she’s found a lot of benefit of being able to have NS open on her office desktop during the days (when he’s doing brick-and-mortar schooling which isn’t now).

Besides that, not really any reason to share with anyone else in my mind.

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A quick text or phone call from my wife has brought me out of a low stupor more than once. When I get very low I don’t even pay attention to the device alarms.

She also has enough sense not to bother me at 60 and flat.

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In addition to this previous post, I do share my data with my healthcare providers. I think national guidelines require me to share my data in order to get my insulin pump and FSL reimbursed. It doesn’t bother me. They only look at my data when I have an appointment and there’s little for them to complain about. So they’re not ‘spying’ on me all the time.

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That could be quite sobering if you are not prepared for it, I’ve got to believe that you were. I know that you have prepared him to make his own health care decisions. We all go through this with any child but I have to believe its a little harder with a diabetic child.

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Great to hear from you Gary! Yes, we have been preparing for it, also his older (non-dia) brother helped calibrate us a few years ago. But it is absolutely harder with our dia child. I can’t remember the last time I helped my older son with something medical, and with my younger son it is at least once every other month. Quite a difference. We are working with attorneys right now to put a valid medical power of attorney in place before my son heads to college in the fall. With our older son, we just used an internet template, that may or may not hold up to real scrutiny. Since the possibility of needing it is so low.

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Interesting, never thought about a medical POA for 18+ “children”. I went off to college with a box of syringes and bottles of Lente insulin. And maybe some of that yellow tes-tape. Times have changed!!!

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Absolutely, today if you were in a car wreck and incapacitated while at college your parents wouldn’t be able to find out anything about your condition or help make medical decisions without that power of attorney. Rest assured, he will also have a box of syringes, some pump supplies, and of course blood sugar strips and insulin.

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But wouldn’t that be true whether they were still living with you, vs college ? Or is 18 years old the criteria regardless.

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It would be true even if they were living with you. We just feel that the likelihood of the types of activity that could result in hospitalization are more likely to occur once we aren’t around every day. Also, once this Covid craziness is in the rear view mirror.

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Your son is on board with the whole idea?

Having the maturity I do now I’d want the same thing for my 18 year old… but when I was 18 I think I’d have very likely scoffed at the idea and insisted on my own independence…

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