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    • 2 hours, 56 minutes ago
      Ahh Life likes your comment at
      If compensation were offered for research participation, what format would you prefer?
      Unmarked non-sequential bills under the table is preferred. Cash plus free insulin or CGMs would be fine too. Eversense is really missing out on an opportunity by not partnering with trials to offer a free E365 and insertion to get people to try their device.
    • 1 day, 14 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Every 9 days I have to have to change an infusion set after one day use to switch the sensor to the other side - come on deccom you can do better
    • 1 day, 14 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 14 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change infusion sites every other day rather than every 4th day. I’ve been doing this for years after I started to see my insulin requirements increase dramatically on the 3rd day. It’s not really “earlier than recommended” since my endo agrees with this schedule and writes my prescriptions to accommodate it.
    • 1 day, 14 hours ago
      Ahh Life likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I usually extend them rather than cut their longevity short. I am insulin resistant and if I don't refill pump at day 2 I can't get to day 3-4. So, I usually use it a day longer than instructed due to the refill. And before moving to G7 I would restart my CGM and get an average of 14 days with some rare, 21 day uses in the mix. Sadly, Dexcom has figured out how to make more money off us by forcing a restart every 10 days with a transmitter built in.
    • 1 day, 16 hours ago
      Molly Jones likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change my infusion site early if it's ripped off (obviously) or if I'm running high for no reason I can detect. Changing the site can sometimes help. I only change my CGM early if 1) it's going haywire with my numbers (reading high or low without cause) or 2) sometimes it's just convienant due to scheduling. But that's usually one day early.
    • 1 day, 20 hours ago
      Lawrence S. likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 20 hours ago
      Daniel Bestvater likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 21 hours ago
      dholl62@gmail.com likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change my infusion site early if it's ripped off (obviously) or if I'm running high for no reason I can detect. Changing the site can sometimes help. I only change my CGM early if 1) it's going haywire with my numbers (reading high or low without cause) or 2) sometimes it's just convienant due to scheduling. But that's usually one day early.
    • 1 day, 22 hours ago
      TEH likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Sites on my legs seem to get irritated with resultant higher glucoses by day 2, so I often change out these sites every 2 rather than 3 days.
    • 1 day, 22 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 1 day, 22 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Assuming I would live long enough to complete it — I’m going to be 80, but I’m a healthy, active T1D.
    • 1 day, 22 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 1 day, 22 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Yes. At my age (according to the social security life expectancy table) I have 8.6 years left. Whew! Thank heavens for that point-six. 🍄🦋
    • 1 day, 23 hours ago
      atr likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 23 hours ago
      Chrisanda likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 2 days, 14 hours ago
      Ahh Life likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 2 days, 14 hours ago
      Ahh Life likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Assuming I would live long enough to complete it — I’m going to be 80, but I’m a healthy, active T1D.
    • 2 days, 17 hours ago
      Mary Thomson likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 2 days, 17 hours ago
      TEH likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 2 days, 18 hours ago
      Kristi Warmecke likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 2 days, 20 hours ago
      lis be likes your comment at
      If research results were shared directly with participants in plain language summaries, how valuable would that be to you?
      I don't have problems reading published results. I'm more concerned with information that doesn't get published or is just left out.
    • 2 days, 20 hours ago
      lis be likes your comment at
      If research results were shared directly with participants in plain language summaries, how valuable would that be to you?
      Why would you want to restrict plain language disclosure to participants? How about plain language for everybody?
    • 2 days, 22 hours ago
      Sarah Berry likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Yes. At my age (according to the social security life expectancy table) I have 8.6 years left. Whew! Thank heavens for that point-six. 🍄🦋
    • 2 days, 22 hours ago
      Sarah Berry likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
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    How do you advocate for your diabetes goals/priorities with your care team?

    Home > LC Polls > How do you advocate for your diabetes goals/priorities with your care team?
    Previous

    Does your diabetes care provider discuss/bring up goals from a previous discussion/visit?

    Next

    Does your health care provider ask you if YOUR overall diabetes goals/priorities are aligned with your life goals during your visit or before the visit in prep?

    Samantha Walsh

    Samantha Walsh has lived with type 1 diabetes for over five years since 2017. After her T1D diagnosis, she was eager to give back to the diabetes community. She is the Community and Partner Manager for T1D Exchange and helps to manage the Online Community and recruit for the T1D Exchange Registry. Prior to T1D Exchange, Samantha fundraised at Joslin Diabetes Center. She graduated from the University of Massachusetts with a Bachelors degree in sociology and early childhood education.

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    17 Comments

    1. Lawrence S.

      I said “Other”.
      Most times, I’m content to go to visits and review my blood test results, get my scripts renewed, and I’m on my way.
      Occasionally, if there are concerns or symptoms that I want to discuss I will bring them up during the visit. Sometimes, I write them down ahead of time if there are a few issues, or if it will be a while before my visit, and I don’t want to forget about the issue.

      9
      3 years ago Log in to Reply
    2. Gary Taylor

      I answered “other”. I have two primary goals: A1c under 7% (preferably 6.5%) and TIR of 80% or more. I mention those goals occasionally but not at every appointment. I assume that my diabetes care providers understand this and don’t need to be reminded every time.

      1
      3 years ago Log in to Reply
    3. MARIE

      I said other because it’s changed over time. In the beginning when it was all new, we were soaking up info and we presented lots of questions and our own goals.
      We got what we could from the doctors, educators, dieticians, etc. in terms of information and technology. But we quickly learned that many of the medical professionals would not share what they considered to be our aggressive goals and would actually criticize an A1c of 6.0 for being “too low”, so we just moved into ‘smile and nod’ mode. We try to speak as little possible about diabetes at non-endocrinology appointments. We don’t really have to ‘advocate’ with the endocrinologist as she knows our priorities and while she does not entirely endorse our approach, she does support us.

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

      Again talking about goals. My goal, obviously, is to be as healthy as I can be.

      3 years ago Log in to Reply
    5. T1D4LongTime

      I always have a list of priorities and goals ready for my endo to review. This question should have been “Select all that apply”. I also email or call the office as well as listen to my endo’s recommendations as I may have missed an important management goal.

      2
      3 years ago Log in to Reply
    6. Tod Herman

      I keep a list in my phone of issues or questions that I want to discuss with my endo. I see her quarterly. I also keep track of my test results and A1C in that same list.

      Sometimes I don’t have any specific issues. The basic goals are simply to keep things in check and avoid the lows. My endo is fantastic and she lets me be human and “live a little” to enjoy life. I really can’t ask for anything more.

      1
      3 years ago Log in to Reply
    7. Sue Martin

      Goals? My care team only talks about keeping my BG lower. It seems they only really review the last couple of weeks of my data. No one has ever talked about long-term goals.

      4
      3 years ago Log in to Reply
    8. Milly Bassett

      I have a great Endo that allows me to text him when I have a concern with how my body is reacting to different things. Or when I have unusual low blood sugars or high blood sugars. We try to sort it out and sometimes we can fix it and sometimes we can’t. It’s a guessing game either way. But at least he’s there to to read my concerns and responds.

      3 years ago Log in to Reply
    9. Jordan Harshman

      I was looking for the response option “While I know my support team is there for me, I am primarily independent in setting goals and managing priorities.” I get my labs and am interested to hear from my endo about the latest science and tech, but otherwise set my own goals.

      5
      3 years ago Log in to Reply
    10. kristina blake

      I upload – via T-Connect – my pump and CGM data everyh month WHen it is time for a phone appt (I prefer those) the Endo “pulls” up the data and we can talk about whatever I often have to defend my aggressive T1D mgt, reminding them that I believe I deserve the “good labs and TIR” I remind them that I am smart, I’ve been doing this for over 40 years, and I am both willing and able to do the work it entails. Thanks goodness for the T-Connect reports, they “prove” that my A1C isn’t the result of very high bg’s offset by very low bg’s. Sometimes I feel like opening the conversations with “Oh, ye of little faith…”

      3
      3 years ago Log in to Reply
    11. Amanda Barras

      I both attend appts and try to remember my priorities or I email. If I forget to ask something at an appt I email later.

      1
      3 years ago Log in to Reply
    12. AnitaS

      I never really think of short or long term goals. I go to my appointments with a list of questions or ideas that I want to discuss with my diabetes P.A.

      1
      3 years ago Log in to Reply
    13. Eva

      I have a short list of question time I visit my endo.

      #1 – How do I stay my healthiest and fittest?
      #2 – How do I need to modify my diet and/or insulin/carb ratio to achieve my BG goals during exercise like tennis, running, or weight lifting.
      #3 – What additional tests can help me understand how my system (my body) is doing and what I can do better.

      3 years ago Log in to Reply
    14. KCR

      My goal is simply to live a healthy life with this disease. For me, this depends more on mental health practices (such as meditation and self-compassion) than diabetes goals specifically.

      2
      3 years ago Log in to Reply
    15. Wanacure

      I used to use website portal to send & receive emails. But right now having trouble accessing.

      3 years ago Log in to Reply
    16. Amy Schneider

      I don’t feel insurance allows my care team to spend the time I might want to go over goals/priorities.

      2
      3 years ago Log in to Reply
    17. Jennifer Edmiston

      I come to my visits with a list of items and also communicate with my team between visits. By doing both, I am able to stay on top of my goals and keep myself on track.

      3 years ago Log in to Reply

    How do you advocate for your diabetes goals/priorities with your care team? Cancel reply

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