FUDiabetes

Encouraging others to take charge of their T1D/Helping my brother try a CGM


#1

So, I am headed home for Thanksgiving tomorrow and that has got me thinking about my brother. He was diagnosed with LADA about 5 years ago and he’s 27 now. I haven’t seen him since I got my act together, but I have a sneaking suspicion he may have also been struggling last I saw him. We were together for almost a full weekend and I never once saw him test his BG or pull out an insulin pen. It’s possible that he was sneaking off to the bathroom for insulin but I’m not sure.

He’s had social anxiety for a long time, and I feel like he may feel embarrassed doing diabetic stuff openly. Even, I guess, if it’s just with my family, who are obviously not phased by diabetic stuff. I can relate to this on some level, there was a while a few years ago where I felt very awkward testing my BG in front of people, particularly in front of strangers.

I’m interested in trying to have a dialogue with him about this, but I have a few holdups. For one, we’re not that close and we’ve never been that close. For two, thinking about myself when I really didn’t care about diabetes management, I don’t think I would have wanted to talk about it with someone. But, I am also kind of making an assumption there, that he’s struggling… I just see habits I have when I don’t care, so I am assuming he is behaving that way for the same reason. If it was really just social anxiety and he’s hiding everything he does, I would love to try to encourage him to not care what others think but I can’t think of a way I would attempt that that he would receive well.

Finally, I wanted to maybe try to encourage him to get the Freestyle Libre and offer him my MiaoMiao since I’m not using it anymore. To my knowledge he has no CGM and it’s mostly because his insurance kinda sucks, so it would be the more affordable CGM option for him. Heck, I can even give him my Libre Reader so he doesn’t have to spend $60 on that. He’s quite techy so I don’t think xDrip+ or Nightscout would be too tough for him, he might even like setting those up. I guess I want advice on how to frame this recommendation, like how would you try to sell someone on CGM who has never used one before? I think his biggest holdup is going to be other people seeing it, which is honestly kind of problematic for the Libre+MiaoMiao’s recommended back of the arm location… but I’m just kind of hoping the “look at your phone for BG readings” coolness-factor will win out I guess?

I’m not sure I’m actually gonna see him this weekend since he doesn’t love Thanksgiving but I’m pretty sure I’ll see him sometime this holiday season, so please give me your advice. Am I just being a busybody? Should I just talk about the CGM stuff and leave the rest alone?


#2

I think you could start a conversation around you getting your act together, and that you hope he is taking care of himself. Perhaps he would open up with that type of intro. If family doesn’t care about you, who will?

As far as the CGM, I think offering him the tech you aren’t using and encouraging him to try it would be awesome!

I think the only thing that won’t work is confronting directly.


#3

I’m a visual learner…I’d say just show him yours, how it works, how it’s helped, the stress it’s removed from you and made your own management easier, etc., Then offer him you old one at no cost…and you’ll even help him set through the process…answering questions, being there, etc.,


#4

What I see is you putting in a lot of thought into why he might be doing what he is doing— without even being 100% sure what he is or is not doing. My instinct is that without knowing where he is in his own self-care, you don’t really stand a great chance of delivering the perfect message as you’re not even sure what it is he needs to hear.

This isn’t bad. Not in my opinion. I think sometimes it’s best to just demonstrate. So you do that. You demonstrate paying attention, you demonstrate being open, you demonstrate the ease or convenience of it. Most of all, you demonstrate change. There are two things you have to offer your brother, and they are both as clear as day. You offer a positive take on diabetes because you’re a living example of that, and you offer support and guidance, which is what I see with your desire to give him your own stuff. You are all that he needs if he wants to do it, but it’s gotta be his call.

That’s my take. I have a kid who comes around who is very young. He was diagnosed maybe a year and a half ago, and he’s struggling. I have so many things I want to say to him— so many things I want for him. For now, I’m choosing to remain quiet and to give him a glimpse of diabetes in a positive light. I told him a long time ago how hard it was, and now I’m trying to show him how easy.

Take good care of yourself whether he is there or not. People notice, and you never know what will trickle back to him.


#5

Seriously, @ClaudnDaye, that was exactly what I said— just in 850 fewer words.


#6

Mind-reader. I wanted to get it out there before you, too. :smiley:


#7

Took me an hour to thumb type that out on my phone. Wasn’t hard to do. :grin:

Must learn how to get it out in fewer words. :woman_facepalming:


#8

You can always dictate into your phone, or swype… These will allow you to be verbose without much risk of texting thumb.:slightly_smiling_face:


#9

Love @ClaudnDaye’s advice!

To us, the peace of mind that comes with a CGM is invaluable. The increased control performance is something we could never achieve without one. We just sold our nephew-in-law (twice removed, no blood relation) on a CGM after showing his dad what we did with ours, and explaining how much more at peace you are. We did just what @ClaudnDaye suggested.


#10

Thanks for the suggestion’s everyone. And thanks @Michel for reminding me to update you all! :grin:

As expected I didn’t get much of a chance to talk to my brother alone while I was home, he didn’t end up going to Thanksgiving but I did end up going to see his new condo with my parents. I had told my mom about my plot to offer him the MiaoMiao and she seemed dubious that he would be interested but encouraged me to try. I ended up kinda blurting it out in an awkward exchange as we were all getting into the car to leave his condo, and he had absolutely no idea what I was talking about so I told him I’d send him more info.

I sent him a pretty long email explaining the Freestyle Libre system, the MiaoMiao, xDrip+ (he’s an Android user), and Nightscout. Sent him the link to my Nightscout site so he could check it out, sent him links with info about all the other stuff, and rambled a lot as I tend to do :stuck_out_tongue:

He emailed me back basically like “this is kinda overwhelming but you obviously know a lot about it, I’m interested in trying. Open source CGM software is a very interesting idea.” (he’s a major techie so I thought he might like that)

SO yep. I did let him know he could use Dexcom with the software as well if he wanted to, and that he would need the 10-day sensors since the 14-day apparently don’t work with the MiaoMiao. We’ll see how it all goes when I get home in a few weeks!


#11

That’s awesome! Gratz on the success!


#12

Maybe mention TCOYD conference will be helpful. Just reviewing the website info and seeing all the pics can be an inspiration.

Here is 2019 schedule. I have attended other D Conferences, and hope to do TCOYD in 2019.


#13

Tomorrow I am setting him up with a sensor, finally!
I got a Libre sensor for him and brought the MiaoMiao (+tapes and stuff) home for the holidays. Unfortunately I forgot to bring a Libre reader but thankfully I do have a Librelink-compatible iPhone so I will hopefully be able to start his sensor with that. I asked him to try to get the xDrip+ app on his phone ahead of time, since he is far more technically savvy than me and I barely know how to operate Android phones :stuck_out_tongue:


#14

I love seeing people do good things. If for some odd reason your efforts go unacknowledged (or are met with anything negative at all), I want you to know there is another diabetic out there who acknowledges, appreciates, and is motivated by your actions. :heart:


#15

I wholeheartedly agree with the sentiments @Nickyghaleb shared!!


#16

Thanks @Nickyghaleb and @Millz, so sweet! :smiling_face_with_three_hearts:
No need to worry though, my parents are thrilled to bits that I’ve convinced him to give CGM a try!


#17

You’re an awesome sister. :slight_smile:


#18

He’s officially got it set up!

He seemed very nervous about it. After we got it inserted I could see his hands shaking a little as we tried to set up xDrip+, which made me feel a little bad. And he did think the insertion hurt, which I was a little surprised by (but maybe that’s only because I’m familiar with stuff like the G5 insertion, which I think hurts more).

He waited out the hour but didn’t have his meter with him to calibrate (which probably means I was correct in my assumption he doesn’t test often, though I know assumptions are bad…) so he’s headed home to finish getting it working, with encouragement to text me if he needs help.


#19

Only the assumptions that turned out to be wrong. The right ones are okay. :grin:

Just wanted to say one last time I think you did something amazing. I hope he gives it a shot. :crossed_fingers:


#20

Yeah, that G5 insertion hurt quite often, but of course for us the data was worth it. With that said, the G6 insertion is almost magical.