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    • 3 hours, 16 minutes ago
      lis be likes your comment at
      On average, how many hours per week do you spend actively thinking about or managing diabetes tasks?
      Actively thinking about things is only during pump,CGM changes, meals, activities. Which is not many hours in a day. However, it is always running in the back of mind.
    • 3 hours, 16 minutes ago
      lis be likes your comment at
      On average, how many hours per week do you spend actively thinking about or managing diabetes tasks?
      Probably just 1 hr most days. But better questions are: (1) how many times per day & (2) how taxing/draining is it?
    • 3 hours, 16 minutes ago
      lis be likes your comment at
      On average, how many hours per week do you spend actively thinking about or managing diabetes tasks?
      I'm not sure this is something that can be quantified in hours per week? 5 minutes here, 10 minutes there multiple times throughout every day, it adds up. But I don't keep track...it's just life
    • 3 hours, 16 minutes ago
      lis be likes your comment at
      On average, how many hours per week do you spend actively thinking about or managing diabetes tasks?
      For the last 52 years living with T1, my diabetes care is always on the forefront of everything I do.
    • 3 hours, 16 minutes ago
      lis be likes your comment at
      On average, how many hours per week do you spend actively thinking about or managing diabetes tasks?
      This is a little bit like asking, "How many grains of sand does it take to make an entire beach." I dunno. No idea. But it's a bunch. Maybe even zero on most days. Then the wonderful American medical system says, "You haven't got enough to worry about. Let us complicate your life a thousandfold to keep you on your toes.." Thanks, guys. 🍒
    • 7 hours, 45 minutes ago
      Gerald Oefelein likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      I’m either too old or live too far away. I’m 72 and live in Arizona
    • 7 hours, 45 minutes ago
      Gerald Oefelein likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      Quite a few opportunities I would have considered I aged out.
    • 8 hours, 26 minutes ago
      KSannie likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      Requests for my personal information that I don't want to share online.
    • 8 hours, 50 minutes ago
      kristina blake likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      It was to test one of the new CGMs that measures ketones in addition to blood sugar. I live in Houston and the research was in Austin. Would have involved many trips to Austin that basically would have spent the promised stipend. In addition, they were going to raise and lower my BS to see if the CGM would measure the ketones correctly. That sure didn't sound enjoyable so I passed.
    • 8 hours, 50 minutes ago
      kristina blake likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      While I'm not sure if I had a significant chance of being selected, I declined to further pursue the potential for being considered for the Vertex islet cell study, due to it preventing me from donating blood products for at least the duration of the trial. I'm a passionate platelet donor, and I am okay with living with diabetes in order to be able to continue doing so regularly.
    • 8 hours, 56 minutes ago
      Ahh Life likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      I was declined because they only accepted diabetics with an ac1 of 7 or above.
    • 9 hours, 11 minutes ago
      Lawrence S. likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      Unfortunately, I neither have the time or financial resources to travel out of state.
    • 9 hours, 12 minutes ago
      Lawrence S. likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      While I'm not sure if I had a significant chance of being selected, I declined to further pursue the potential for being considered for the Vertex islet cell study, due to it preventing me from donating blood products for at least the duration of the trial. I'm a passionate platelet donor, and I am okay with living with diabetes in order to be able to continue doing so regularly.
    • 9 hours, 12 minutes ago
      Lawrence S. likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      It was to test one of the new CGMs that measures ketones in addition to blood sugar. I live in Houston and the research was in Austin. Would have involved many trips to Austin that basically would have spent the promised stipend. In addition, they were going to raise and lower my BS to see if the CGM would measure the ketones correctly. That sure didn't sound enjoyable so I passed.
    • 10 hours, 3 minutes ago
      Beckett Nelson likes your comment at
      Have you ever declined a research opportunity? If so, what was the primary reason?
      While I'm not sure if I had a significant chance of being selected, I declined to further pursue the potential for being considered for the Vertex islet cell study, due to it preventing me from donating blood products for at least the duration of the trial. I'm a passionate platelet donor, and I am okay with living with diabetes in order to be able to continue doing so regularly.
    • 23 hours, 49 minutes ago
      Bruce Schnitzler likes your comment at
      On average, how many hours per week do you spend actively thinking about or managing diabetes tasks?
      Actively thinking about things is only during pump,CGM changes, meals, activities. Which is not many hours in a day. However, it is always running in the back of mind.
    • 1 day, 1 hour ago
      Ahh Life likes your comment at
      How important is it to you that research studies include participants who reflect diverse ages, races, and backgrounds?
      Backgrounds matter to a surprising degree. The zip code you live in is better predictor of your heart disease risk than your LDL cholesterol level.
    • 1 day, 4 hours ago
      TEH likes your comment at
      How important is it to you that research studies include participants who reflect diverse ages, races, and backgrounds?
      Backgrounds don’t matter, but ages and races should be considered as those would be factors that could affect outcomes of study. Not diversity for diversity sake, but testing to make sure therapies can work on everyone.
    • 1 day, 4 hours ago
      TEH likes your comment at
      How important is it to you that research studies include participants who reflect diverse ages, races, and backgrounds?
      A civilization that does not care about others isn’t truly civilized.
    • 1 day, 4 hours ago
      TEH likes your comment at
      How important is it to you that research studies include participants who reflect diverse ages, races, and backgrounds?
      Even though we are all one in the human race, we all have a unique physiology. The more people with diverse genders, ages, and races will be the most informative.
    • 1 day, 7 hours ago
      Laurie B likes your comment at
      How important is it to you that research studies include participants who reflect diverse ages, races, and backgrounds?
      It depends on the research. Some research questions deal with youth and T1D. More needs to be done with aging populations with T1D, and LADA. Most all the research should have diversity of gender and race unless the question is involved with a particular race or gender. But what is the control? The question of inclusion of diversity should always be a part of the development of the study and its what is desired in its findings.
    • 1 day, 7 hours ago
      Marty likes your comment at
      How important is it to you that research studies include participants who reflect diverse ages, races, and backgrounds?
      A civilization that does not care about others isn’t truly civilized.
    • 1 day, 9 hours ago
      Lawrence S. likes your comment at
      On average, how many hours per week do you spend actively thinking about or managing diabetes tasks?
      I put 5-10, but don't really know. I have auto-generation and install updates to both DIY Trio and Loop each week, that takes minimal time. I participate in four different on-line groups (FUD [daily], BeyondT1 [once in awhile], LoopZulipChat [on Loop development/questions], and Trio Discord [development/questions on Trio]. I also look through Facebook groups every once in awhile for Loop and Trio. Then there's the before meal/snack dosing of insulin (requires carb counting/estimating and carb entry) and then correction dosing as needed. When I think of question appropriate for my Endo, I write it down so I don't forget. I get the added bonus of dealing with EPI (roughly 30% of T1s have it/get it) which necessitates determining my fat intake and treatment with enzyme pills so I can digest food (mostly fats, but also protein and carbs). There's a lot to it that gets "normalized" in my routine...most of the time! Once in awhile, my mind "forgets" one or the other briefly.
    • 1 day, 9 hours ago
      Lawrence S. likes your comment at
      On average, how many hours per week do you spend actively thinking about or managing diabetes tasks?
      That’s a tricky question, somewhere between always and sometimes. After about 50 years of T1D I think I run on autopilot. But having said that everything one eats or if you move around or sit around must be taken into account. Even with CIQ I need to run different basal programs…..inactive to highly active….or am I eating larger quantities of carbohydrates…many variables that we automatically adjust for.
    • 1 day, 9 hours ago
      Lawrence S. likes your comment at
      On average, how many hours per week do you spend actively thinking about or managing diabetes tasks?
      The hours really add up if I include all of the time I spend trying to wrangle the health care system-making doctors’ appointments, sitting in waiting rooms, dealing with insurance, sourcing, ordering and tracking supplies, etc. On the day I was diagnosed, I remember anticipating how much time and energy I’d have to devote to the “healthcare” system for the rest of my life. This caused me more distress than the prospect of coping with the disease itself.
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    How many times in 2021 did you have an appointment with a Certified Diabetes Care and Education Specialist?

    Home > LC Polls > How many times in 2021 did you have an appointment with a Certified Diabetes Care and Education Specialist?
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    Sarah Howard

    Sarah Howard has worked in the diabetes research field ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange.

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    32 Comments

    1. Britni

      5 or more in 2021. Normally only 2/year, but I needed some extra help in January/February.

      1
      4 years ago Log in to Reply
    2. Mick Martin

      3 scheduled appointments, but I was in hospital for several months with COVID-19 so I did see a CDE several more times.

      4 years ago Log in to Reply
    3. connie ker

      If a nurse practition counts, that is who I see when they travel to my hometown. I had 3 appointments this year with this traveling NP and RN which saves me driving alone to and from a larger city an hour away. I appreciate them making the trips instead of me making the trips out of town.

      4 years ago Log in to Reply
    4. Clare Fishman

      I find I mostly end up educating the educators. I haven’t seen a CDE or whatever the name was changed to in many years.

      3
      4 years ago Log in to Reply
      1. cynthia jaworski

        me too.

        4 years ago Log in to Reply
      2. ConnieT1D62

        The call themselves Certified Diabetes Care and Education Specialists (CDCES) now. It’s a fancy title to give HCPs with specialized training credibility to take on the role of teaching people with diabetes and related comorbid conditions self-care skills to live well and healthfully with diabetes. I find that many of the CDCES, (formally known as CDEs) have good intentions, but are pretty clueless when it comes down to really knowing and understanding what it is like to live with T1D unless they actually have it and live with it themselves.

        1
        4 years ago Log in to Reply
    5. Lawrence S.

      It’s been many years since I’ve seen a Certified Diabetes Care Education Specialist. I honestly don’t remember the last time, maybe 20+ years.

      4 years ago Log in to Reply
      1. Patricia Kilwein

        Speedy recovery!

        4 years ago Log in to Reply
    6. jlagueux

      Only once, and that was when I was about to start on my pump. I don’t have a need for an cde. I have an amazing Dr, who I met with monthly this year until she left for maternity leave. And she is very responsive to email. I miss her terribly, and can’t wait for her to get back. I am really struggling right now and can’t get in to see the NP I was assigned to, and she’s not responding to my emails. Im so lost. Sry, that was a total vent!!!

      4 years ago Log in to Reply
    7. Patricia Kilwein

      I put 4 because I got a new insulin pump.

      4 years ago Log in to Reply
    8. Kathleen Juzenas

      Once. Normally it would be twice but “second” appointment has been put off until 1/4/22 because of the holidays.

      4 years ago Log in to Reply
    9. Sarah Berry

      I put zero, but I always see a diabetes nurse before the endocrinologist sees me at each appointment.

      4 years ago Log in to Reply
    10. Bob Durstenfeld

      I saw my endo four times, three time on Telehealth, but I have never seen a Certified Diabetes Specialist in 65 years of T1D

      1
      4 years ago Log in to Reply
    11. kflying1@yahoo.com

      I haven’t found a diabetes specialist, or an endocrinologist practice, that has a clue about the reality of being a diabetic.

      2
      4 years ago Log in to Reply
    12. Kristine Warmecke

      Zero, however I have emailed and spoken on the phone with her several times. When I was unsure of what to do next. She’s become more a sounding board for me, at the moment. I’m sure that will change in the future, again.

      4 years ago Log in to Reply
    13. kflying1@yahoo.com

      Zero – those folk don’t seem to be available in Portland, Oregon.

      4 years ago Log in to Reply
    14. Janis Senungetuk

      Twice this year. I also have contact with her via MyChart if I have specific pump/CGM questions. My 90 day appointments now rotate between my endo and CDCES.

      4 years ago Log in to Reply
    15. Mark Schweim

      I said ONE because until latest appointment I had been told my endocrinologist had NO CDE’s to work with me, but last Endo appointment, my Endo had to be out of town so transferred my appointment to his CDE, which I think I may prefer over her boss because the Endo tells me what he thinks I should do while his CDE is also an Insulin Pump USER and she actually takes the time to go into more details on why she and he think such changes might help and also wants MY input on personal experiences that might say “What I’ve been doing myself is likely better” and after discussion is more willing to admit “EVERYBODY with T1D has MORE EXPERIENCE with their own condition than any Doctor they’ve been seeing ever could, so the Doctor can ONLY make recommendations, but if the patient has differing opinions, the Doctor needs to take those patient opinions into consideration and maybe the patient actually knows more than the Doctor concerning the discussed topic or treatment option.”

      1
      4 years ago Log in to Reply
    16. Pauline M Reynolds

      I put 0, because I do not know if the PA or the NP I saw were CDE’s.

      4 years ago Log in to Reply
    17. GiGi

      I’ve never been to one.

      4 years ago Log in to Reply
    18. Christina Trudo

      2020 and 21 were both zero, where most of the past few decades it’s been once or twice generally, occasionally more.

      4 years ago Log in to Reply
      1. Christina Trudo

        No wait- i had one phone appt this year, modify my result to 1!

        4 years ago Log in to Reply
    19. LizB

      Zero. I’ve seen my new endo three times. My insurance just put my old endo back in network (and the hospital she works in) and there is a NP/CDE who works with my old endo, and is who I’ve seen way more times than the endo. I’m trying to make an appointment with her for Spring 2022.

      4 years ago Log in to Reply
    20. Becky Hertz

      4 this year, 3 with nutritionist and one with nurse. Usually my answer would be 0.

      4 years ago Log in to Reply
    21. ConnieT1D62

      None in 2021. Although the NP I see is a long-time CDE, she no longer serves that function because she is a full-fledged Endocrine prescribing provider in the practice she works for. I am fortunate that I am a RN, CDCES and when in need, I consult HCP friends and colleagues in the professional business of diabetes care and education – most of whom are also T1.

      4 years ago Log in to Reply
    22. Ahh Life

      Zero. But my late mother-in-law was a CDE. She also had a PhD in pharmacy. Talked with her many times over the 50 or so years I knew her. She was never judgmental and always eager to learn. Perhaps she was simply glad to have so many sons-in-law and daughters-in-law. ( ͡❛ ω ͡❛) ( ͡❛ ω ͡❛)

      4 years ago Log in to Reply
    23. Lucia Maya

      I rarely have appointments with either my CDCES OR my endo. I email with one of them when I need RX refills, and had a brief trial with Victoza this year that I discussed with the endo. But I always find I know more than they about the day to day decisions and choices I need to make. I’d love to have a T1D good friend or practitioner I could run things by when I need, but I use the various online groups as needed…

      4 years ago Log in to Reply
    24. Linda Zottoli

      I don’t have a regular CDCES. My current doctor (of I guess 22 years of so) has relationships with some that he has referred me to on occasion. I did like and find helpful one very logical non-diabetic one, who helped me with a particular problem once, but, except for that, the only one I have found helpful has been the long-term diabetic one, who has since moved on.

      4 years ago Log in to Reply
    25. Kim Davis

      2

      4 years ago Log in to Reply
    26. David Smith

      Shoot. I answered 4, but after reading some comments, it’s clear I was assuming my Endo and her PA are CDCESs, but now I’m not so sure. Honestly, I’m not even sure what a CDCES does. Time to hit Google search! Happy New Year, y’all!

      4 years ago Log in to Reply
      1. ELYSSE HELLER

        My endocrinologist always pushes me to make an appointment with her CDES but I’ve done that and found that I didn’t learn much. I think it might help if the CDES was also a TID. I have been a TID for many, many years and I don’t really need to be told to count my carbs, limit my portions, and check my blood sugars.

        4 years ago Log in to Reply
    27. KCR

      Generally I obtain a referral from my HCP to a CDE in January every year. In 2021, I also consulted with a specialist diabetes education clinic to work on specific issues (sick day plan, reducing post-meal spikes, adjusting overnight basal rate). This was a big help and an excellent investment in my self-care.

      4 years ago Log in to Reply

    How many times in 2021 did you have an appointment with a Certified Diabetes Care and Education Specialist? Cancel reply

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