Finally found an endocrinologist I think we can work with, so that's great news for us. Been trying to figure out the DOC - or "diabetes online community" - which I've been working on for over a year. I like TuDiabetes, which was my first venture into the DOC. Asked questions, got answers, felt supported.
I tried linking up with other D-moms & D-dads on Facebook. I found a "friend" in Kentucky who is active in JDRF & also has a teenage daughter who plays softball. I have asked her many questions & maybe I'll get to see her in person sometime. Otherwise, I'm basically a getting a bunch of D-news in my Facebook feed, which is somewhat helpful, but really not putting me "in touch" with others.
I joined Twitter. I started following D-bloggers, people with diabetes circles in their profiles, people who seem to be in the know. Once again, I'm just surfing through the D-feed. The DOC seems a little insular. (See what I did there?) The regulars link their blogs & their friends' blogs & re-tweet each other. Wow. A Twitter Clique. Tweet a question & you're lucky to get a response. I'm following 370 accounts & I have about 3 D-people who interact with me.
It's so hard to get the T1 diagnosis. I've wondered how my daughter must feel. I thought I could only compare it to the way I felt when I was pregnant -- my body was not my own, I had something inside which was virtually in control & I was just responding to its needs.
My daughter is about to turn 16, diagnosed at 14 with T1; it's something she tries to hide, doesn't want to admit or take care of in public. I know how she feels.
i feel that same way as shawnmarie, i havent actually been on other sites, but tu more than exeeded my expectations for connecting with others and feeling heard. as far as your daughter is concerned, my son is the same in regard to his D he handles it well but does not want to share with others outside of his family or very close friends. i think it is related to his shy personality and this is not going to change significantly unfortunately because it has caused him some anxiety. but as long as he is taking responsiblity and moving towards acceptance these are my bigger concerns which he is doing. acceptance on both of your parts will be helpful, as well as relying on each other for support. glad you hooked up with a better endo, we are meeting up with a new one friday more so he feels valued as a pt than for input, not to toot my own horn but i feel i am his best advocate, diabetes is a self managed disease as others have said and i think we are doing pretty well. this is a great site for info and support so i hope you feel heard and understood here! amy
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This is a little off-topic from the original post, but not completely...
I'm wondering how parents can help kids with diabetes feel PROUD, rather than embarrassed. I'm not a parent, so I don't have an answer from that side of the experience. I was diagnosed at a very young age and didn't attend public school until later, so I may have been prepared for a different experience around "fitting in" than the average teen, but I have always felt proud that I manage to tackle this giant challenge every day (some days more gracefully than others). I really think that, like anything else, one can spin this in a variety of directions, and I am incredibly grateful that the spin my parents managed to model for me was that the strength and dedication with which I managed my diabetes was impressive and to be admired. I don't really know how they conveyed that to me, though, other than to let me know that THEY were impressed.
I think kids that age are proud telling their parents the parents are stupid?
I agree the DOC is wierd, and like the characterization tweeting/retweeting and blogging and reblogging that goes on. I don't see a huge amount of "solutions" there as many of the ones I've stumbled upon have more of a "chronicle" style, talking about having done things and are sometimes amusing but don't offer much in the way of "I improved my A1C by...." like the dialogues on Tu? There's checks and balances too, so that if someone repeatedly terrorizes new discussions bemoaning how miserable we all must be (*cough cough*), other people can say "well, it can suck but there's a lot out there that doesn't..." or whatever? Similarly, there's sort of a safeguard in place should someone say "well, I think you should take about 20 units of Novolog if your BG is 75..." that someone else will pop up to suggest a more measured (literally!) approach. Since, after all, the sun never sets on Tu? I love the Tu map and wish it had more people on it!
The one issue about Tu is that the only "food solution" that seems to have traction from its vociferous partisans is low carb. I will admit that I do that a little bit but not wholeheartedly and cheat off my excesses (*urp*) by running several times/ week. I suspect that that slant may be off-putting to a lot of teenagers as it certainly would have been to me?
There are a few people, eg Anna Banana, who seem to fit in pretty well as teenage members. Maybe the parents can lure the kids into hanging out and realize that not everyone w/ diabetes looks like Wilford Brimley, not that there's anything wrong with that?
i agree with trying to make children feel proud of their diabeties management skills and good decisions, postitive reinforcement is so important, what is the good ratio 5:1, to bad my husband isnt on board with that but that is another story!!! the harder part is getting him to feel ok with it out in the world, we also try to make him feel supported by us and that this in only part of him, he has so many other great parts! as i am sure sam does to, it helps to make more interations during the day be about nonD stuff, yes we count carbs do all we have to but we dont overbeat it so to speak. i really do wish i could get him on here talking but he wants to deal with it and forget it, i understand that i guess his approach can work to some extent, he deals with what he has to do then trys to just do his normal thing, i think that is ok, i just worry about his anxiety over things at school but one day at a time i guess!
comparing diabetes to the pregnancy experience, i sort of get the analogy but not really i think maybe later down the road you will both accept this all more, i try to think of jacobs diabetes as something we can manage together, it is not a scary monster, it is what it is and we can handle anything as parents, we have no choice, acceptance is the only way to move out of the denial/anger/disbelief stage. i hope a greater sense of ease comes to you both and you have more good days than bad/ less suffering and more joy! amy
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Maybe my main lesson is to stick with TuD. I heard about the DOC & wanted to venture out, see what was going on, but it's too intimidating & then ends up being inhibiting. Strangely, I see DOCers talking about conferences & want to take my daughter to Friends for Life 2012 -- thought it might help her with the proud part of this, but what if that gathering is like these online experiences? All those people who already know each other & the wallflowers. Emily, I need to get Samantha to feel accomplished with what she handles, but I have to figure out how. Acid, totally get your comments. I can't get Samantha active on TuD, have tried to hook her up with other T1s at school, on Facebook, on Twitter. It's all a little scary, she can be shy anyway & talking to someone even online would be admitting that she has to deal with it. Thanks to everyone for comments. Feeling less alone, even though it's been a bad D day, battling highs & headaches. That is when it's best to rely on TuD!
As with all relationships, those in the DOC grow over time. Some of us have "known" each other for years. You need to just jump right in there and comment on blogs, respond to tweets that others write, and interact on Facebook and tudiabetes. Soon you will find a core group of d-moms and d-dads to interact with. But if you don't speak up, we won't know you are there. I have no doubt you'll find some people in the DOC to call your own, but you have to put yourself out there.
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Maybe it's the light traffic at blogs? Your blog is great, well written, interesting, lots of good information (*salutes* "Taking one for the Team" LOL...I agree w/ your daughter, those needles are not nice!) but not a lot of comments? I like that the good topics on the message boards can really go on and on, sometimes for a long time? I think there's people who are dead whose presence is still on the boards? I'm not a massive fan of the "games" @ Tu as at certain times of day, the games take over, but people like them so c'est la vie. It seems to me like message boards are more engaging but maybe are looked at as sort of "old school" since they are not as hip as twitter or FB or various other "venues"?
I've tweeted at people; I've participated in DSMA tweet chats; I've commented on blogs & I write my own thoughts here on TuD. I'm now trying out the Parent site of 1 Sweet Life. This may be helpful because it's specifically aimed at parents.
