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CGM in the Cloud: Personal Preferences.

“Why would you want your continuous glucose monitor information in the cloud?”

Fair question, especially coming from folks in the CGM in the Cloud Facebook group, which is heavily dominated by parents of children with diabetes.

I didn’t want to answer, at first, because I didn’t want to say the wrong thing.  When I meet with parents of kids with diabetes, the instinct to protect them is undeniable.  I want to tell them stories about people who are thriving with type 1 diabetes – “Hey, have you heard about the guy who is running across Canada?  Have you heard about the woman who gave birth to twin boys?  Have you heard about the couple who met and fell in love via the diabetes community?” – because that is the perception of diabetes that feels best to share.  It feels good to share successes, triumphs, proud moments.  You can thump your fist against your chest in pride; we are not held back by diabetes.

This is what I want to tell the parents of kids with diabetes.  Their kids will be okay.  Because that’s true – their kids will be okay.  But not without compromise, and that’s hard to articulate because it seems to fly in the face of “your kids will be okay.”  I don’t like reminding people that their kids with diabetes will become adults with diabetes because this disease is forever.  It’s uncomfortable to admit that diabetes is hard.  It’s hard to find words to illustrate the concept of, “I’m fine … sort of.”

“Why would you want your continuous glucose monitor information in the cloud?”

I’ve had some low blood sugars that have rocked me so hard I couldn’t recover, even after I had technically recovered.  Whether you want to admit it or not, diabetes requires extra planning.  Even the best and tightest and most well-controlled diabetes still comes with the threat of lows or highs.  This is why glove compartments end up crammed with jars of glucose tabs, and why back-up insulin pens litter the bottom of purses.  I was always taught to hope for the best – you can do anything with diabetes! – but to have a plan for the worst, should it happen.  Never ride a subway without snacks.  Never put diabetes supplies in checked luggage.  Always check blood sugar before driving.

“Call me when you wake up so I know you’re alive,” is a phrase casually uttered by my mother when my husband is traveling, but the honesty to it stops me cold.  Does my mom worry that something will happen to me at night?

Before Birdy was born, I had a healthy fear of lows, but after she arrived, that fear became something different entirely.  Now, a debilitating low blood sugar doesn’t just touch me, but it could hurt her, too.  When she was a few months old, my husband went away on a weekend trip and it struck me for the first time that if I didn’t wake up, no one would be there to take care of my daughter.  I pictured her in her crib, crying, alone, and without care.  The idea of her going without breakfast hurt me more than picturing my own unresponsive body.

Sounds dramatic?  It’s dramatic as fuck, because diabetes is quiet, until it’s not.

“Why would you want your continuous glucose monitor information in the cloud?”

Why?  Because having someone else able to monitor my blood sugars makes me feel safer.  I can’t make insulin anymore, but I can create peace of mind for myself, and for my family.

So I’m not waiting.  I’m not waiting for bad things to happen.  I’m taking a preemptive bite out of fear by putting another safety net into place.  When I’m traveling for work, I will have my CGM data streaming to the cloud, and my husband and my mother (as needed) will have access to it.  When I am alone in a hotel room, my family will have the peace of mind knowing that they can see my blood sugars while I sleep.  Same for when my husband is traveling and I am alone with our daughter.  As much as I know the CGM companies are working hard to bring this technology to patients, waiting removes the safety net that would help me sleep better at night.

I am not waiting.

 

 

17 Comments Post a comment
  1. Denise #

    Kerri, I just reread that post about that wicked low you had where your mom was the first to comment and I just aobut started crying AGAIN. I am hooked on the FB cloud page and ppl are saying stuff like, “this would have been great when my kid was little but now she’s a teenager,” or whatever, or leaving for college. I keep thinking, um, no way is my kid leaving for college without me knowing her bs! I know about privacy, blah blah, but Yes, your mother really does worry that you might not wake up in the morning. I know this for a fact because I have an 11 yr old dx as 4 and if she drifts off in the car I wonder if she is sleeping or unconcious. I can’t help it.

    Others are careful to point out not to rely solely on this and to have a safty net. As far as I’m conderned, this IS the saftey net. The truth is I’ve been wanting this since she was first dx’d. I had fantasized about this, “wouldn’t it be great if I could just have her bs sent right to my watch or soemthing!” and now yrs later it’s actually happening. Not like when they keep saying that a cure is 5 to 10 yrs away, but actually for real happening. I’m on it like paint.

    07/16/14; 11:26 am
  2. Nell #

    Kerri, thanks for that explanation. I understood from the parents point of view, but not how it could help me. I do now. …

    07/16/14; 11:39 am
  3. John #

    Kerri thanks for putting this perspective on the Cloud. I don’t travel much, but I occasionally do solo drives to events or family that are 1-3 hours away. My wife could be a safety net with this. Although she may not want the added stress…:) I’ll be talking to her about it.

    07/16/14; 11:43 am
  4. Megan #

    Kerri
    Thank you so much for this post! I first heard of cgm in the cloud from you last week. I’m a T1D mom to twin two year old boys who also have T1. I have really good control and we are all doing great but Ii have been in that scary situation of my husband being out if town, going scary low and for the very first time in my life, after 20 years w T1 I used Glucagon bc I was so scared that if I didn’t take care of my low fast enough who would be able to take care of my three boys if I passed out? I totally agree and understand why you want cgm in the cloud. The more eyes watching, the better! I really appreciate the info!

    07/16/14; 1:21 pm
  5. This is new technology – for management, not treatment, and I’m considering it. But the private part of me doesn’t want to share, and have to deal with someone else’s reaction, or over reaction to my levels. And, I don’t want anyone to see what I really see. For all they know, I’m fine….

    07/16/14; 1:46 pm
    • I totally feel you on this. I was just talking with a friend about how I want to use this option for when I travel, or when I’m solo-parenting, but not for the regular course of my life. I don’t want to introduce helicopter-spousing, etc. But I am very grateful to have that OPTION to choose.

      07/16/14; 1:50 pm
  6. The vain part of me also loves this because when the CGM is on my pump screen and I’m wearing a dress, I don’t want to yank my pump out every time I want to see how I’m doing. And that ugly watch can easily fit in a purse. (It’s all about living, right?)

    07/16/14; 1:50 pm
  7. Thanks for the honesty Kerri! As a mom, that is one of the many things that I truly HATE about diabetes…that my son (and the rest of you) have to worry about something as simple as being alone and having a low. Its not fair, its not right and it terrifies me. I would love to be able to “know” through something like this that he is okay without him having to report in.

    07/16/14; 1:54 pm
  8. LOVE this post. (and thanks for the shout out, btw!) My hubby travels a lot with his work and my mom calls me several times a day when he’s gone. And she freaks a little if I don’t answer or call back within a reasonable amount of time. (Now, her version of reasonable and mine are different, but you get the jist… ) I’m home with my 3 boys, as you know … and yes, it IS scary. I have anxiety issues sometimes when I really start to think about the “what ifs”. I LOVE LOVE LOVE the idea of having the information in the cloud. Although, after seeing the previews for the new Jason Segal/Cameron Diaz movie .. .it has me questioning – “What IS the cloud???” HAHAHA

    07/16/14; 6:10 pm
  9. Sally Poutiatine #

    I’m kind of torn about the CGM in the Cloud… I LOVE Dexter and he has been an absolute game changer in helping my 15 year old T1 daughter (diagnosed at 5) learn to manage her diabetes. And her T1 really is a team effort. She obviously carries the heavy burden, but I’m here to support, assist when she wants me to and yes, to nag when I need to. I love being able to see her numbers/hear the Dex alarms at night, because teenagers can sleep through ANYTHING. But I worry about helicoptering. It seems like there’s a fine line between independence and stalking. As she goes through high school and gets ready for college, I’m totally willing to help – if she wants me to – but I don’t want to control her management as she reaches adulthood. I’m wrestling with the pros and cons of this access to data. I like your approach of using it as a temporary tool for traveling, etc. I’m sure a teen would really love carrying/charging an extra device too, on top of all her other tech tools… :)

    07/17/14; 2:55 am
    • I agree with everything you wrote, Sally. I feel like CGM in the cloud can be really powerful for the parents of young children with diabetes, and for adults with diabetes who choose to use/choose to share. The whole teenager/college area in between is very muddy because there are so many struggles for independence. Have you talked with your daughter about it?

      07/17/14; 6:54 am
      • Sally P #

        I asked my daughter about it and her first response was, What?! Another device to drag around and charge?! Ugh! :) . She said she would rather set her alarm at night to check, rather than dragging more gear around. But she was intrigued about traveling with her choir without Mom tagging along… We will continue to have the conversation as technology evolves. I think maybe the conversations more important than the technology in these teen years!

        07/18/14; 10:26 am
  10. Katie Scarborough #

    Finding your blog as a parent of a (fairly) newly diagnosed child with diabetes has been wonderful for me. I really appreciate your honesty with the difficulties of diabetes as well as the triumphs. It’s given me a great insight into my son’s future and how bright it is and what challenges we can overcome together. Knowing that no one can be perfect, that bad blood sugar days happen to everyone, complications can happen to anyone is hard to know, but it is reasuring to know we are not alone. Thank you so much for sharing your honest perspective so openly!

    07/17/14; 8:41 am
  11. Nick #

    Kerri- Wow. Boy did you nail it.

    It’s hard for someone who does not have to deal with the unexpected changes in blood sugar to understand the terror it can elicit. Pre CGM, I drove to a conference, got in late, went to bed, and did not wake up because I was low (I almost never over sleep). A call came at 820 am asking if I was coming to the meeting. I had a BG of 40 and had been drifting, drifting, its so peaceful to lie there like that…. until you realize….. WTF! I’m low!! This is not nirvana, this is a one way ride down the abyss… GET UP!! EAT NOW!!! I drank a big soda in 45 seconds and ran down to the meeting, unshaved and bewildered for the next 15-20 minutes, and managed to get thru the rest of the day. Got home that afternoon after a 2 hour drive, went right up to take a shower, and my wife asked me if they had showers in Philly…so I had to ‘fess up.
    That made her pretty nervous when I traveled in the future. The CGM cloud application would have saved her a lot of anxiety. I usually wake up now with CGM alarms (it’s not NIRVANNA…GET UP!!!). But not everyone does. Especially teens. And it can be just as hard on the loved one. It can be fatal on those reliant on you. Several years ago, a man was found dead in his garage with the car running, apparently had been for 3-4 hours, and his 3 yo daughter dead in the back seat…both died of CO poisoning… he had type 1 diabetes and a history of severe hypoglycemia reactions. You don’t need CSI to figure out how that went down. The CGM cloud could have saved him, and her….

    Not waiting sounds like a better plan…
    Rock on, Kerri!

    07/17/14; 8:55 pm

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