15 Responses

  1. Bernard Farrell
    Bernard Farrell August 16, 2011 at 6:58 am | | Reply

    Interesting comment about ‘vetted’ sites. I wonder if we could connect to the CDEs and provide a (LOOOOOOONG) list of sites that provide useful information. There’s a lot of really great sites (including the ‘Mine), and just because the CDEs are ignoring them that doesn’t mean their patients aren’t finding out about them. If the CDEs get involved in the DOC conversations, then they might find themselves more qualified/able to deal with the real-life situations we’re all struggling with.

  2. Health Blog
    Health Blog August 16, 2011 at 7:30 am | | Reply

    Great post. All diabetes patients should read this post. I am twitting this post for benefits of diabetes patients.

  3. Megan
    Megan August 16, 2011 at 7:57 am | | Reply

    I really enjoyed this article, thank you. I have been recently getting notifications on my phone when you all post articles and I’m so happy I found this sight! My mother is a type 1 diabetic and living with her has encouraged me to become a CDE someday..I still have a few years left..but reading these articles has really opened up my eyes to how a lot of CDEs work and I agree with you all 100% that they Need to listen to everyone online. That is where our nation is at now, everything and everyone is online and they really should take advantage of the opinions and feelings of diabetics. Hmm, I know where i’ll be getting a lot of information when I begin my career hah. Thank you again for all the articles! :)

  4. Meagan
    Meagan August 16, 2011 at 12:01 pm | | Reply

    It’s a shame that they haven’t realized the value of the DOC. Patients can get 24/7 support from the DOC as well as motivation and tons of encouragement. My life changed so much for the better when I found the DOC. Now, I could never go back to the way I was before…which was not a very happy PWD. Hope they do include more on that next year. Thanks for sharing, it’s interesting to see it from their perspective!

  5. Natalie
    Natalie August 16, 2011 at 1:23 pm | | Reply

    I was one of the few “patients” (don’t like that word) attending!! I was most fascinated by the Food, Fat and Satiety, and Fructose and CVD: A Not So Sweet Connection presentations. If you can download the pdf files, they are well worth reading, although these ladies said a lot more than is in the slides.

    I certainly think we need more of a presence at professional meetings, however cost is very much an object for most people. Somehow, we need to get it through to them that diabetes MUST be a partnership, not a doctor and CDE/patient relationship.

    My CDE friend, non-diabetic, who roomed with me told me it was very educational for her to actually live with a PWD — she got to see what a hassle it is, especially when you’re low and confused, or when you have an infection (I developed a UTI, and had to decide whether to go to the ER or to wait it out until I could get a message through to my doc, and get a prescription phoned in — $45 cab ride for a $5 prescription, because I didn’t know where the closest pharmacy was!).

    I WAS impressed with the level of knowledge and commitment that the CDEs demonstrated, but it’s the partnership component that’s missing. I didn’t really like being talked down to, when I asked questions. Sometimes I was just confirming my own knowledge, and didn’t like being treated like I was stupid. And I didn’t like the fact that they assumed I was Type 1 when I asked Type 1 oriented questions, and Type 2 when I asked Type 2 oriented questions. As if I couldn’t advocate for EVERYONE!

    So, I hope we have some representative at all the important conferences, and find a way to make ourselves more of a presence!

  6. Carmie Brent
    Carmie Brent August 16, 2011 at 4:54 pm | | Reply

    Maybe they are just not concern to their health, they make every thing simple. At somehow they have a point, worrying doesn’t change everything. But they should follow their doctors.

  7. KristinW
    KristinW August 17, 2011 at 9:01 am | | Reply

    Great post! Maybe when the CDEs listen to themselves a little more about the important of support in acheiving goals, etc., they will see the value in the DOC. What if they think about it like this?: As valueable as it is for all CDEs to gather together to learn from each other (ie the AADE conference), is as valueable as it is for PWDs to gather together and learn from each other (ie the DOC).

    The condecension is what most irks me about the whole clinical aspect of managing diabetes! Grrrrrrr! Maybe someone should do a study comparing clinical and satisfaction outcomes between CDE-patient engagements that respresent “respectful engagement” vs “condescending and authoritative speak.”

  8. June S.
    June S. August 17, 2011 at 8:04 pm | | Reply

    Years ago, I thought I wanted to become a CDE. I ran into a Catch 22, because in order to have finished the courses and field work for an MSW, I would have needed to quit my job (and lose my health insurance!) Anyway, when I did attend an AADE conference, back in the 1990′s, I ended up rooming with a CDE who was not a Type I diabetic (or, in fact, any diabetic at all) – though she was a nurse. She was intrigued by how frequently I tested my blood glucose, and the large variations it encountered following a very strict meal plan. I am happy to report that she told me afterwards “Wow! I have never roomed with a diabetic before. Thank you! You have given me great insight into what it is like to have to LIVE with this disease!”

  9. JBS
    JBS August 18, 2011 at 9:45 pm | | Reply

    My experience with CDE’s
    CDE 1. Has diabetes, uses a pump. Talks down as if you are stupid even though you are also on a pump. Worthless office visits.
    CDE2. Has diabetes, uses a pump. Friendly, honest, practical and living a very normal life. Doesn’t talk down, talks equal. Eats real food.

    The DOC is important, however, a great deal of newer generation type I and IIs are acting like they know better than the trained professionals. Many are mocking the CDE’s and what they teach or the views they convey.
    I think there should be a balance. And the ones I really like I will take advice from and I wont be bad mouthing. Nor will I act like I know far more than they do. The others simply won’t be getting my business.

  10. Natalie
    Natalie August 18, 2011 at 10:04 pm | | Reply

    JBS, maybe you have a choice of CDEs, and diabetes professionals, but many of us don’t. We take what we get, and sometimes it’s case 1 (or maybe nothing at all). I only got real diabetes education in the beginning from the DOC — lucky enough to be diagnosed as an adult in the computer age, even if it was the wild and woolly Usenet. Now I try to give back what I can — I don’t diagnose or tell anyone what to do, but I DO suggest ideas for them to talk to their docs and CDEs and dietitians about. But when it’s case 1, it gets very hard. And people need to be empowered to advocate for themselves.

  11. Kathy
    Kathy August 19, 2011 at 5:00 am | | Reply

    I wish I had a CDE that I could actually listen to his/her advice. Much of the advice given to me over the years has been as if they were talking to a child. I am compliant and I do want to learn better ways of controlling my diabetes, but so far it hasn’t been education I’ve learned from a CDE. To me the DOC has been much more help than my Endo, GP or the CDE ever thought of being. There must be good ones out there, but not in the area where I live.

  12. Mary
    Mary August 19, 2011 at 9:52 am | | Reply

    I’ve had educators before that barely look you in the eye. Like I would trust them or do what they say! However, I really love my current CDE. She is a Type 1 pumper, very knowledgeable, down-to-earth, and very reasonable with her approach to my care. She even gives out her personal email to patients. That’s what I call dedicated! For those of you who haven’t found a good one, keep looking beacause they are out there! In my opinion, the medical field is like all other fields; there are going to be good professionals and bad ones. It’s our job to sort them out!

  13. Larry007
    Larry007 August 21, 2011 at 1:27 pm | | Reply

    My CDE is a pumper at Kaiser. Seems pretty knowledgable and friendly so far. Have only met her once. She did email me congrats for good management on my bg’s though so that was nice.

    This word “compliant” is so irritating. Like I am bad somehow if I don’t comply. This is a free country for god’s sake. I personally think a lot of what cde’s teach us is canned for general consumption and there is no thinking going into it at all. D is not a one size fits all disease and they still don’t seem to realize that fact.

  14. Julia
    Julia August 24, 2011 at 5:49 pm | | Reply

    Sorry to hear you were disappointed the DOC was not mentioned in this session. I attended this session (I’m a diabetes educator) as well as the session on the DOC. They were both excellent! I am in the process of putting together a quick education session on the DOC for my patients. I think the online community is a valuable resource for information and support! I will continue to visit this community (and others), learn from it and recommend it to my patients.

  15. Julia
    Julia August 24, 2011 at 5:54 pm | | Reply

    I’m sorry to hear you were disappointed the DOC was not mentioned in this session. I attended this session (I’m a CDE) as well as the session on the DOC. They were both excellent!! I think the DOC is a valuable resource for information and support. I will continue to visit this community and others and recommend them to my patients!

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