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Besides These Forums, What Websites Do You Follow?

Discussion in 'General Discussion' started by sszyszkiewicz, Mar 19, 2014.

  1. sszyszkiewicz

    sszyszkiewicz Approved members

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    One thing we have that they didn't have 20 years ago to help us manage this disease is the internet.

    What pages besides CWD do you have bookmarked/find interesting?

    My list includes
    Diabetes forecast ( http://www.diabetesforecast.org )
    Diatribe (http://diatribe.us)
    Diabetesmine ( http://www.diabetesmine.com )
    Joshua Levy's Blog ( http://cureresearch4type1diabetes.blogspot.com )
    Diabetes Research Institute ( http://www.diabetesresearch.org )
    Tianhecell ( http://www.tianhecell.com )
    Allies Voice ( http://www.alliesvoice.com )

    What about Facebook groups? Google+ circles?
     
  2. Sarah Maddie's Mom

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    Not too many.

    I read Kerri's blog when I see her posts on FB. She's "Six Until Me" and I check out Glu's site, mostly for their reporting on the BP project.

    I only want to devote so much of my day to things diabetes so I try to keep a lid on it :wink:
     
  3. Christopher

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  4. joshualevy

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  5. Megnyc

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    I like the facebook groups for omnipod and dexcom. I don't belong to any other forums but occasionally read tudiabetes (which I find too large and confusing to check on a regular basis).

    I think I have a different attitude towards diabetes than most of the people with blogs so I don't find them very useful. This is going to make me sound really cynical but I am just not sure how unbiased a perspective you can provide on diabetes and diabetes technology when you are getting your pump and cgm supplies provided free by the company and/or being flown out to different meetings by Medtronic/Bayer/Roche etc.

    The accuracy of the information on a lot of diabetes websites is a bit questionable (including at least one you mentioned). I'm all for providing information and advice but if you are claiming to be some sort of authority on the subject the advice you provide should, at the very least, not be dangerous.

    Sorry to sound so negative. I have found this forum to be by far the most informative and accurate source of diabetes advice.
     
  6. mamattorney

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    I belong to the facebook groups for Dexcom and t:slim. I also belong to a local facebook group, but no other forums. At one point I had joined several other diabetes support type groups on Facebook, but I dropped all of them. People are just in different places in their life journey and despite all of us being parents of T1 kids, I didn't share their experiences or opinions and the posts just depressed and/or frustrated me so I dropped them.

    I sporadically check several other sites that I have saved in a folder on my bookmarks including Ellen's Scoop It site, A Sweet Life, DiabetesMine and Insulin Nation. I couldn't get my arms around tudiabetes so I haven't checked that in months.
     
  7. Don

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    My regulars are 'Mine, TuD, and CWD. As always the caveat is the DOC will have you thinking the majority use pump and CGM when actually it is a minority!
     
  8. sszyszkiewicz

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    Thats funny. I guess the sites would get pretty boring covering needles, vials, pens......

    Its hard for me to judge, but I get the impression that in the last two years there seems to have been a series of upticks in the technology to help manage things.
     
  9. Mish

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    I definitely like Six Until Me for a real world perspective of a successful adult who has grown up with diabetes (regardless of tools and funding, etc), I like her take on life and I enjoy her writing. Even if she didn't write about diabetes, I'd still like her blog; she used to have a great stories about her upstairs neighbor - "shoes".

    I like Glu - but don't get to read as much as I want . Mostly, I think the team that runs/works for Glu are just some of the most amazing people I've ever had the pleasure of knowing, in real life.

    In my feed reader :
    DiaTribe - especially New Now Next
    Diabetes Mine

    and feeds from different journals ;
    Diabetes from the ADA
    Clinical Diabetes also from the ADA

    And a bunch of google alerts that show up in my feed for specific terms like Type 1 Diabetes, Monogenic Diabetes, things like that.

    And then I have a long list of diabetes parent friends from over the years whom I keep in touch with on Facebook. Many names are ones that will show up in the very oldest posts here on CWD. It's fun having that ability to post something to them, and know they'll understand. "36 with 3.5u IOB. FUD!!"

    I also co-run a local group based out of our clinic/hospital. We stay connected on facebook.
     
    Last edited: Mar 20, 2014
  10. Dave

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    There are some great sites on FB for LCHF Type ones - adults and children. Smart folks with really tight blood sugar control.
     
  11. rgcainmd

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    My apologies to you, sszyszkiewicz, because I am about to hijack your excellent thread…

    Dave, your post (above) and particularly your signature offend me:

    Father of Type 1 and state champ QB, David. A1C=4.4 as of March 2014.
    Diagnosed March 2013

    You wear you son's A1C as if it were a medal that you earned by encouraging him to avoid carbs as if they were poison. This "medal" belongs to your DS and his pancreas, specifically to his rested beta cells that are still honeymooning on the Island of Limited Insulin Production. My 11-year-old daughter was dx'd with T1D 01/24/2014; her rested beta cells are undoubtedly lying on a towel near your son's on the beach of the Island. But, like it or not, our childrens' beta cells are getting exhausted and will not be able to continue dodging their confused and mistaken auto-immune systems indefinitely. When their beta cells' untimely death eventually occurs, their honeymoons will be over. Sad but true. My daughter eats carb-laden food as if it were going out of style. She eats 3 meals and 3 snacks daily that are not at all unlike the foods she ate before her T1D dx. Other than having T1D, my daughter is a healthy and normal weight child who is doing a great job of continuing to live her life like most other kids her age who do not have diabetes. Despite her breakfasts of Lucky Charms and fruit and the additional multitude of carbs she consumes every single day, my daughter's A1C is 5.1. The "credit" for about 90% of that relatively low A1C goes to my daughter's honeymooning beta cells. The other 10% is due to the effort my daughter and I put into managing her T1D with frequent BG checks, ongoing adjustments in her insulin regimen, continuing T1D education, and (hopefully in the near future) the assistance of an insulin pump and CGM. Dave, although I believe that your heart is in the right place, your brain isn't. Hopefully, your tween son's carb-restricted diet is not doing him any harm, physiologically or psychologically. But I shudder to think what will happen WHEN (NOT IF) your son's honeymoon ends. Will your frustration surrounding your DS's inevitably increasing A1C's be projected onto your son, making him feel like he has somehow failed you and/or the Gods of Normal Range A1Cs? I desperately hope not.

    Dave, Dave, Dave, for your son's sake PLEASE wake up, eat some Skittles, and taste the rainbow. And throw a few Skittles your son's way, for heaven's sake.
     
    Last edited: Mar 26, 2014
  12. sszyszkiewicz

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    Guys,

    Did you ever consider the fact that "Dave" is not exactly real? Yes there is someone responding to posts every once in a while, but clearly with an agenda. Since forums like these and others have sprung up over the internet over the past 20 years, heck even back when there was Compuserve forums before the internet, and then social media, there are people who make a living trying to convince you of this or that, make you do a search, and then all of a sudden there is this interesting looking book and you are $20 lighter.

    Its just a thought. "dave" sort of has that feel about him, to me at least. he seems virtual. He seems like Virtual Dave.....shall we say VD?

    I think though those of you that jump down VD's throat are indeed doing a service, because newbies in the world of T1D could easily lose their $20, and much much more. The best way to deal with VD is to challenge misinformation and leave it at that.

    If VD is real, and his son has an A1C of 4 (which translates into a blood sugar less than 70....which is a tell.....so I suspect VD will be updating his signature to something believable any day now) we should all just be happy he found his way through this insanity known as T1D.

    If VD says something inaccurate/wildly untrue/dangerous to newbies, we should just point that out so VD cannot do any harm. For example bolusing off of protein content sounds dangerous.

    The best way to stop the spread of VD is information.

    But when you see something from "dave", in your mind think "VD". At the very least it will make you laugh.

    Fundamentally I don't think "dave" is real.
     
  13. mamattorney

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    Dave is a real person. I've read his comments on another website (different user name) and he has a blog that he linked to on another website.

    I mean, I guess he could be making the whole thing up, blog and all - but I don't think so. That would be a lot of effort for very little reward.
     
  14. sszyszkiewicz

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    I am sure he is real, but not genuine. I think he is a viral marketer.
     
  15. mmgirls

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    There is some real science for blousing for protein and fat, the body does in fact convert it to glucose that hits the blood stream.

    Dave is an extremist, it does not seem like he can go with the flow nor take it easy. He has changed his whole families life around his child Type 1 diagnosis he is scared for the possible health effects of the diagnosis in of itself, he is scared of the potential risk for his other child. He considers carbs evil and to be avoided as much as possible.

    There are not many family's that are willing/want to or able to do what his family does, and he is and ass for suggesting that our kids are doomed for complications because we do not follow the same thinking.
     
  16. Megnyc

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    Dave, I am curious the frequency and severity of lows you are seeing with an A1C of 4.4 (so an average BG of 80). I actually just downloaded my dexcom and over the past week my blood sugar ranged from 45 to 237 with an average of 110. I was under 70 (what I define as low) 4% of the time. I am trying to figure out if your son's blood sugar is running on average 30 points below mine, how you are doing that without frequent and severe lows. I understand that the dexcom is a great tool but personally I would be more concerned about hypoglycemia than hyperglycemia especially since you are dealing with a child. While it is normal for a child without D to have an A1C in the low 4s their bodies have mechanisms to protect against hypoglycemia that can be weakened or dysfunctional with type 1. I understand you want what is best for your son, I would just personally look into the effects of hypoglycemia on a growing child and consider if it is worth running your son a bit higher to try to give yourself a bit more leeway.

    Good luck :cwds:
     
  17. hawkeyegirl

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    When I see something from "Dave", I think "BS", but same difference, I suppose. ;)
     
  18. Mish

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    I want to know from Dave, after reading his blog, what's going to happen to the dog you gave your child for his good a1c when it eventually goes up? Will the dog have to go back?
     

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