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    • 4 hours, 55 minutes ago
      ChrisW likes your comment at
      Since starting on a CGM, has your healthcare provider’s frequency of ordering A1C testing changed?
      Still twice a year. It carries much less weight than time in range and the GMI.
    • 16 hours, 2 minutes ago
      KCR likes your comment at
      How often does diabetes disrupt your sleep?
      Almost every night, my sleep is interrupted, at least 9 times out of 10 nights. My BG drops and the T:slim pumps insulin on the down slide until I get to 70 before it stops. It is, in my opinion, a flaw in the algorithm. I don't understand why the algorithm can see the continuous drop in BG. I have numerous screen captures of this situation. I have gotten into the habit of checking my BG right at bed time. Even taking some carbs at bedtime doesn't prohibit lows at night. It is literally exhausting.
    • 16 hours, 43 minutes ago
      TEH likes your comment at
      How often does diabetes disrupt your sleep?
      Lows wake me up. The CGM alarm system kicks in if my body doesn’t. I will shut the alarm system off after I’ve treated the low because gastroparesis slows absorption and that alarm can continue needlessly for another hour until the is sufficiently corrected.
    • 1 day, 7 hours ago
      Ahh Life likes your comment at
      How often does diabetes disrupt your sleep?
      Lows wake me up. The CGM alarm system kicks in if my body doesn’t. I will shut the alarm system off after I’ve treated the low because gastroparesis slows absorption and that alarm can continue needlessly for another hour until the is sufficiently corrected.
    • 1 day, 7 hours ago
      Ahh Life likes your comment at
      How often does diabetes disrupt your sleep?
      Diabetes doesn't necessarily interrupt my sleep per se. Its always the darn dexcom G7 losing signal at random waking me up.
    • 1 day, 7 hours ago
      Ahh Life likes your comment at
      How often does diabetes disrupt your sleep?
      Occasionally from lows - the biggest disruption is the every 3 day reminder to change my pump that goes off at 2am
    • 1 day, 12 hours ago
      Lawrence S. likes your comment at
      How often does diabetes disrupt your sleep?
      Lows wake me up. The CGM alarm system kicks in if my body doesn’t. I will shut the alarm system off after I’ve treated the low because gastroparesis slows absorption and that alarm can continue needlessly for another hour until the is sufficiently corrected.
    • 1 day, 12 hours ago
      Lawrence S. likes your comment at
      How often does diabetes disrupt your sleep?
      Occasionally from lows - the biggest disruption is the every 3 day reminder to change my pump that goes off at 2am
    • 1 day, 12 hours ago
      Lawrence S. likes your comment at
      How often does diabetes disrupt your sleep?
      Almost every night, my sleep is interrupted, at least 9 times out of 10 nights. My BG drops and the T:slim pumps insulin on the down slide until I get to 70 before it stops. It is, in my opinion, a flaw in the algorithm. I don't understand why the algorithm can see the continuous drop in BG. I have numerous screen captures of this situation. I have gotten into the habit of checking my BG right at bed time. Even taking some carbs at bedtime doesn't prohibit lows at night. It is literally exhausting.
    • 1 day, 15 hours ago
      Marty likes your comment at
      How often does diabetes disrupt your sleep?
      Diabetes doesn't necessarily interrupt my sleep per se. Its always the darn dexcom G7 losing signal at random waking me up.
    • 1 day, 15 hours ago
      D-connect likes your comment at
      How often does diabetes disrupt your sleep?
      Almost every night, my sleep is interrupted, at least 9 times out of 10 nights. My BG drops and the T:slim pumps insulin on the down slide until I get to 70 before it stops. It is, in my opinion, a flaw in the algorithm. I don't understand why the algorithm can see the continuous drop in BG. I have numerous screen captures of this situation. I have gotten into the habit of checking my BG right at bed time. Even taking some carbs at bedtime doesn't prohibit lows at night. It is literally exhausting.
    • 1 day, 16 hours ago
      atr likes your comment at
      How often does diabetes disrupt your sleep?
      Almost every night, my sleep is interrupted, at least 9 times out of 10 nights. My BG drops and the T:slim pumps insulin on the down slide until I get to 70 before it stops. It is, in my opinion, a flaw in the algorithm. I don't understand why the algorithm can see the continuous drop in BG. I have numerous screen captures of this situation. I have gotten into the habit of checking my BG right at bed time. Even taking some carbs at bedtime doesn't prohibit lows at night. It is literally exhausting.
    • 2 days, 11 hours ago
      KarenM6 likes your comment at
      Since starting on a CGM, has your healthcare provider’s frequency of ordering A1C testing changed?
      T1D comes with more than its fair share of dystopian grace notes. However, the indefatigable frequency of A1c testing seems to go on forever. I started with the Medtronic CGM dubbed "The Harpoon" in 2006. Tests and frequencies have not changed an inch in 20 years. (¬////¬)
    • 2 days, 16 hours ago
      Natalie Daley likes your comment at
      Since starting on a CGM, has your healthcare provider’s frequency of ordering A1C testing changed?
      T1D comes with more than its fair share of dystopian grace notes. However, the indefatigable frequency of A1c testing seems to go on forever. I started with the Medtronic CGM dubbed "The Harpoon" in 2006. Tests and frequencies have not changed an inch in 20 years. (¬////¬)
    • 2 days, 17 hours ago
      Lawrence S. likes your comment at
      Do you use your CGM data to help make adjustments in your diabetes management plan?
      Often? Try Always! I only see my doc 1x a year to legally fill Rx. Otherwise I manage 100% on my own and make all my own dosing adjustments.
    • 2 days, 17 hours ago
      Lawrence S. likes your comment at
      Do you use your CGM data to help make adjustments in your diabetes management plan?
      My pump and I use the data to make adjustments at every meal, and even during the day, e.g. corrections. But I also use the data to track longer term trends and usage so that I can make adjustments to my pump regimen, bolus rates, correction rates, basal rates etc.
    • 3 days, 12 hours ago
      Amanda Barras likes your comment at
      Do you use your CGM data to help make adjustments in your diabetes management plan?
      My pump and I use the data to make adjustments at every meal, and even during the day, e.g. corrections. But I also use the data to track longer term trends and usage so that I can make adjustments to my pump regimen, bolus rates, correction rates, basal rates etc.
    • 3 days, 15 hours ago
      kristina blake likes your comment at
      Do you use your CGM data to help make adjustments in your diabetes management plan?
      As noted by Lawrence, isn’t that what CGM’s are for? I’m on MDI’s and a SmartPen. Data is what determines my doses.
    • 3 days, 16 hours ago
      Marty likes your comment at
      Do you use your CGM data to help make adjustments in your diabetes management plan?
      My pump and I use the data to make adjustments at every meal, and even during the day, e.g. corrections. But I also use the data to track longer term trends and usage so that I can make adjustments to my pump regimen, bolus rates, correction rates, basal rates etc.
    • 3 days, 17 hours ago
      Mike S likes your comment at
      Do you use your CGM data to help make adjustments in your diabetes management plan?
      This is one of those times when I want to ask T1DExchange “what is the motivation behind this question”? What are you trying to learn from it?
    • 3 days, 17 hours ago
      Mike S likes your comment at
      Do you use your CGM data to help make adjustments in your diabetes management plan?
      As noted by Lawrence, isn’t that what CGM’s are for? I’m on MDI’s and a SmartPen. Data is what determines my doses.
    • 4 days, 4 hours ago
      Bekki Weston likes your comment at
      If you use a CGM, is it accurate on day 1?
      It takes a few hours to get close.
    • 4 days, 4 hours ago
      Bekki Weston likes your comment at
      When I have a temporary signal loss with my CGM, it’s usually when I’m:
      Usually when it's about to expire.
    • 4 days, 12 hours ago
      lis be likes your comment at
      How often do you adjust a planned physical activity because of how your glucose is trending?
      If I am above 150mg/dl don't need to carb up. If I am around 100mg/dl I definitely need to carb up. Aren't we always evaluating where we are and anticipating where we might land. That is part of active management.
    • 4 days, 16 hours ago
      Phyllis Biederman likes your comment at
      When I have a temporary signal loss with my CGM, it’s usually when I’m:
      For me it's compression lows - and that's it. I see that most complaints are about connection to phones. I don't (won't) use my phone. I have to have a work phone with me at least 60 hours a week, and I'm not interested in carrying (or wearing) two phones. I rarely lose connection between my Tandem X2 pump and the sensor/transmitter. Sometimes I will walk away while it's charging and take myself out of range, but that's on me.
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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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