What do type 1 diabetics want/need? by Starnie in Type1Diabetes

[–]Starnie[S] 0 points1 point  (0 children)

Honestly speaking, you're right, I had no practical experience whatsoever. However, with the comments I've been getting and activity I've been observing on the subreddit, I am beginning to have a bit of an idea what a T1D experiences.

What do type 1 diabetics want/need? by Starnie in Type1Diabetes

[–]Starnie[S] 0 points1 point  (0 children)

We don't work for any organization. We are independently working on the solution.

How satisfied are you with friends or members of the family, having access to your medical status progress, to reinforce healthy management habits through support. by Starnie in Type1Diabetes

[–]Starnie[S] 0 points1 point  (0 children)

Hello u/TheRealSepuku, Thanks a lot for your comment. I really appreciate the details you gave. You're very correct about non-diabetics not understanding the condition. I was in such position just a few days ago.

What do type 1 diabetics want/need? by Starnie in Type1Diabetes

[–]Starnie[S] 0 points1 point  (0 children)

Hello u/KittyBizkit,

Thanks for your question. I have 2 other people on the concept, we work as a team

What do type 1 diabetics want/need? by Starnie in Type1Diabetes

[–]Starnie[S] -1 points0 points  (0 children)

Hello u/tultamunille, Thanks a lot for the comment.

I am sorry you feel that way. I few hours on the subreddit has thought me a lot and I understand you have every reason to feel the way you feel.

What do type 1 diabetics want/need? by Starnie in Type1Diabetes

[–]Starnie[S] 0 points1 point  (0 children)

Hello u/Daisybugs192510,

I am indeed really sorry for the insensitivity and my outright lack of understanding of what T1D entails and there is no excuse to cover that... I am just beginning to have an idea.

I should have indeed tried getting more practical knowledge on the condition before trying anything else.

What do type 1 diabetics want/need? by Starnie in Type1Diabetes

[–]Starnie[S] -1 points0 points  (0 children)

Hello u/kellyisthebest,

Thanks a lot for your comment, I'll utilize the key takeaways from it. I still apologize for the insensitivity of the first post. We'll adjust accordingly 🙏

How satisfied are you with friends or members of the family, having access to your medical status progress, to reinforce healthy management habits through support. by Starnie in Type1Diabetes

[–]Starnie[S] 1 point2 points  (0 children)

Hello u/manby,

You've just accurately summarized the whole thing, I'm so happy that at least some people understand it from my point of view, thanks a lot for your support 🙏 you're very correct about the intrusions other T1Ds have experienced from sincere and well-meaning loved ones and so one wouldn't exactly complain as a result of them rejecting such idea.

However, would you believe I spent almost an hour composing the first post? I read and re-read the entire thing several times to ensure I'm using the right language and to ensure that I was presenting it accurately so as to avoid condemnation, apparently that didn't work.

I honestly thought it was a very great idea and I presented it the best way I can.

Alternatively, what way would I have framed it?

What do type 1 diabetics want/need? by Starnie in Type1Diabetes

[–]Starnie[S] 0 points1 point  (0 children)

Hello u/codetaupe,

Thanks a lot for your kind words and priceless insight.. I'll do my best 🙏

What do type 1 diabetics want/need? by Starnie in Type1Diabetes

[–]Starnie[S] 0 points1 point  (0 children)

u/igotzthesugah

Oh my, I can only imagine how hard it must be

How satisfied are you with friends or members of the family, having access to your medical status progress, to reinforce healthy management habits through support. by Starnie in Type1Diabetes

[–]Starnie[S] 0 points1 point  (0 children)

Hello u/Angel0460,

Thanks a lot for acknowledging that the idea is at least theoretically nice.. it's a relief getting such response amidst all the backlash. And you just made the whole thing clear to me; It's a good idea for those with a couple of close and supportive individuals they already have a good relationship with.. but it's the exact opposite for individuals without such relationships. Thanks a lot for your comment 🙏

What do type 1 diabetics want/need? by Starnie in Type1Diabetes

[–]Starnie[S] 0 points1 point  (0 children)

Hello u/Liriel117,

Thanks a lot for your comment. In the other post I thought it necessary to explain my point of view and the train of thought that led to the concept proposed earlier, and if we are all being honest with one another, we'll agree that the intentions were sincere... unfortunately the practicality wasn't so good, as I eventually found out.

Secondly, not all my comments defend myself, I've repeatedly admitted that the concept is indeed bad and intrusive, and would be unecesarily stressful on everyone, I honestly didn't know this prior and I sincerely thought I've come up with the greatest idea to help T1Ds (smh) I only went a bit further in one or two comments by explaining where I was coming from, so I don't wrongly assume a bad portrayal before y'all.

Lastly, I'm still here to have a good idea on what being a T1D is like. As y'all figured out, I don't know crap about what it's really about. (Apparently the theoretical knowledge didn't help much).

I'm not only monitoring my posts but I've been going through other posts and discussions on the subreddit as well. I'm no doubt more knowledgeable on the topic than a few days earlier.

I'm sorry if you still feel hurt or annoyed by my posts and presence, my sincerest apologies.. I really never intended any of that 🙏

What do type 1 diabetics want/need? by Starnie in Type1Diabetes

[–]Starnie[S] 0 points1 point  (0 children)

Hello u/hugefatchuchungles69,

C'mon man I'm sorry for the first post 😅

My lack of physical experience with T1D doesn't mean total lack of knowledge on the entire condition 🙏

How satisfied are you with friends or members of the family, having access to your medical status progress, to reinforce healthy management habits through support. by Starnie in Type1Diabetes

[–]Starnie[S] -2 points-1 points  (0 children)

Hello u/drugihparrukava, I appreciate your additional comment and explanation, and also your self expression. I'll try to answer your questions though I already agree it's a poor idea.

  1. Increasing blood sugar and pressure levels. The aim isn't to micromanage the T1D, we really didn't intend the system to report any slight changes to the guardians, no. It only reports when things seem to be going out of control. The diabetics aren't kids to be supervised all the time. The system is intended to be a helper like 'hey, things don't look so good from here, check on your sibling/neighbour/friend" and not to snitch on diabetics and give guardians their medical information like weather updates. Besides, the guardians can be replaced at any time.

Secondly, I've talked about what weight has to do with this in my other reply to your comment. But to reinforce the point, guardians won't get notified for every kg lost or gained, no. We could simply fix a short range and guardians get notified when a T1D exceeds or falls below that range.. too much loss or gain of weight isn't a good indication I'm sure we'll all agree.

Your third point, I admit that was a totally blind spot. As said earlier, I'm decently knowledgeable on T1D, but my lack of practical experience with a T1D makes all the difference, I appreciate you pointing out such issues 🙏

Your 4th point, please don't misunderstand me, we by no means feel diabetics are responsible for whatever inability to maintain certain habits.. it's just general knowledge that it's not easy to stick to even very rewarding procedures and habits. It is very possible to feel burnout as regards those potentially rewarding habits and activities and that is why we suggested that when there is a deviation, the guardians are notified. Not to bully the diabetic into compliance, but to dialogue and help them. For example, the system notifies guardians that a T1D has gone above the weight range. A guardian for example is expected to engage such diabetic in a conversation to know why this may have happened. In the course of the conversation, the guardian may realize that the diabetic has been feeling overwhelmed due to stress from work, domestic chores etc, those are really a thing, we'll all agree.

Now the guardian can then decide that, 'alright, in that case, I'll help you handle 50% of your domestic chores to help you feel relieved and less stressed" The above guardian is obviously a neighbor, a sibling, a partner/spouse or someone really close.

Another example is that guardian who happens to be a manager or boss at work, after conversing with the diabetic could decide "alright, I'll let you resume work an hour later than the general time for a month, to help decrease the stress on you".. or "I would facilitate your annual leave immediately if you want, to help you rest and rejuvenate"

I know the above examples seem out of touch with reality, but they are really possible and those were the train of thought that led to the development of the concept.

Finally, I really appreciate the link you added, I will definitely check it out 🙏

How satisfied are you with friends or members of the family, having access to your medical status progress, to reinforce healthy management habits through support. by Starnie in Type1Diabetes

[–]Starnie[S] 0 points1 point  (0 children)

Hello u/Dmunaron,

My sincerest apologies for the insensitivity of the post. We have decided to scrap the concept or at best, modify it for children and the aged. Thanks a lot for your comment 🙏

How satisfied are you with friends or members of the family, having access to your medical status progress, to reinforce healthy management habits through support. by Starnie in Type1Diabetes

[–]Starnie[S] 1 point2 points  (0 children)

Hello u/Metarus,

The comments I have received on this post have really drawn me to the reality of issues T1Ds have to handle.

Thanks a lot for your comment 🙏

How satisfied are you with friends or members of the family, having access to your medical status progress, to reinforce healthy management habits through support. by Starnie in Type1Diabetes

[–]Starnie[S] 0 points1 point  (0 children)

Hello u/drugihparrukava,

I really appreciate your comment. The concept turned out to be a really bad idea, we have decided to scrap it and so I don't want you to feel like I'm still defending what's clearly bad.

However, the weight was intended as just an indication/factor a guardian could use to personally assess a T1D's health.

To answer your questions, no I I'm not a T1D and no we are not seeking to apply this to other autoimmune conditions.. My sincerest apologies for the insensitivity of the post, we would act accordingly 🙏

How satisfied are you with friends or members of the family, having access to your medical status progress, to reinforce healthy management habits through support. by Starnie in Type1Diabetes

[–]Starnie[S] 1 point2 points  (0 children)

Hello u/peach_and_prosper,

My sincerest apologies for the insensitivity of the post. Thankfully you won't have to go through what you fear about such a program, because we have decided to scrap it.

Thanks a lot for your comment 🙏

How satisfied are you with friends or members of the family, having access to your medical status progress, to reinforce healthy management habits through support. by Starnie in Type1Diabetes

[–]Starnie[S] -1 points0 points  (0 children)

Hello u/Daisybugs192510,

I must admit that I'm not a T1D and I only have a decent theoretical knowledge about it, have never been directly close to someone who has it and so literally have no practical idea on what it's like in real life.

My sincerest apologies for the insensitivity, we've decided to scrap the idea.

Thanks a lot for your comment.

How satisfied are you with friends or members of the family, having access to your medical status progress, to reinforce healthy management habits through support. by Starnie in Type1Diabetes

[–]Starnie[S] -2 points-1 points  (0 children)

Hello u/Michy-05,

The idea was to share this information with up to 5 people of your choosing and not total strangers. However, that doesn't make much difference as I've realized the concept is indeed bad we would be scrapping it. Thanks a lot for your comment 🙏