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    • 20 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, 11 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, 11 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, 11 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, 11 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, 14 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, 17 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, 18 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, 19 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, 19 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, 20 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, 20 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, 20 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, 20 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, 20 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, 20 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, 12 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, 12 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, 14 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, 14 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, 16 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, 17 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, 17 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, 19 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, 19 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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    On a scale of 1-5, how satisfied are you with your current overall T1D care routine? (1 = the least satisfied, 5 = the most satisfied)

    Home > LC Polls > On a scale of 1-5, how satisfied are you with your current overall T1D care routine? (1 = the least satisfied, 5 = the most satisfied)
    Previous

    Over the past 12 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, etc.?

    Next

    If you have a child with T1D (or at some point you were a child with T1D) who goes trick-or-treating, do you use any strategies to manage the amount of candy they consume? Share what works best for you in the comments!

    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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    30 Comments

    1. Kim Murphy

      I do my own care. There are no endocrinologist in Alaska that insurance covers. My PCP just writes whatever prescriptions I ask her to for whatever insulin and pump and CGM that I have decided I want to use. The other issue I run into is I have to figure out how to use the device I choose on my own because the pump companies never have anyone who trains how to use the pump in Alaska.

      1
      4 years ago Log in to Reply
      1. Sherolyn Newell

        Wow. I am impressed. I am not sure I could handle it all on my own. When my endo, who was wonderful, retired, I asked my PCP if he wanted to take over. He said no way, he wasn’t qualified for that. It’s great that yours will do it.

        4 years ago Log in to Reply
    2. George Lovelace

      Tandem ICQ – Best Numbers since 1963 and 0 Hypos

      1
      4 years ago Log in to Reply
    3. TEH

      I picked 3. The Medtronic G3 is a big drawback (-1). Needing 3 or 4 calibrations a day is annoying. Medtronic is coming out with a G4 that should need less cals. We’ll see. The 770G pump is better than the 630G but cant handle my roller coster BGs (-1). I am holding out for the 780G which can add small bolis doses in addition to the basil doses. Come on FDA. I know you have had a lot on your plate but we need this too!

      1
      4 years ago Log in to Reply
      1. Dave Akers

        That system has always had its sensor as the Achilles heal in my opinion. You think they’d of figured it out by now. I tried 670g years ago and was done w/ it after 3 months…

        2
        4 years ago Log in to Reply
      2. Antsy

        I’m right there with you, TEH! Waiting for the 780G to see if it’s worth staying with Medtronic, or going with another manufacturer. My 670 pump’s rails, the part of the pump that holds the belt clips, have cracked and broken off so I’m wearing it in a holster, or waist belt, both of which are suboptimal. I’m hoping the approval to release the 780 comes very soon!

        4 years ago Log in to Reply
    4. Dave Akers

      Just enthralled with New Insulin tech! Dexcom w/ Degludec and technosphere insulin! Off my pump for almost 3 years with better control than ever.
      What really changed was my ability to tighten my glycemic variability. Avg glucose of around 135… and SD is 35mg/dl!
      Liquid RAA, I was only able to get to an SD around 50mg/dl.

      Ironic as I moved to a fixed dose with Inhaled vs. a variable .5u dosing options.

      People need to try this stuff to really understand it!

      1
      4 years ago Log in to Reply
      1. Wanacure

        Huh! Interesting!

        4 years ago Log in to Reply
    5. Joan McGinnis

      43 yrs with T1D and really doing well with diabetes for the length of time I have had it. I read everything and see an endo always. My primary encourages it. My endo tells me I am a great example of an educated person.

      4
      4 years ago Log in to Reply
      1. kristina blake

        Getting the compliment of …an educated person… is rare indeed! Sometimes I think the better we are at managing things, the more the Endo’s feel obligated to disrespect us.

        2
        4 years ago Log in to Reply
    6. Sahran Holiday

      Most of my care is me. Have good endocrinologist, ophthalmologist and primary care, very smart and know how to talk to me.

      1
      4 years ago Log in to Reply
    7. connie ker

      I have had 3 Moderna vaccines and the last one was 3 days ago. I have all of the side effects which seem to be gone today but blood sugars have been very high and hard to knock down. Has any other T1Ds experienced high blood sugars after the live covid vaccine? Moderna is the strongest and the 3rd shot was 1/2 dose but still filled with side effects. Please respond with your comments. Thanks

      4 years ago Log in to Reply
      1. Tracy Jean

        My blood sugar went up a little after my third Pfizer shot, but my worst side effects were a bad headache and nausea. If I have to get a fourth, I think I will try Moderna. Hope your blood sugars come down soon.

        4 years ago Log in to Reply
      2. Antsy

        Connie, I had the Moderna 50% booster ~10 days ago (had the J&J in April). I didn’t notice my sugars being wonky at all. The injection site was like a bug bite until yesterday, but my shoulder never hurt enough to wake me up when I rolled over at night. I have had a transient headache almost every day since, and developed a slight fever for a few days 48hrs after the injection. But I didn’t notice my sugars being affected by either vaccine (and I would have, since my sugars usually start acting up before I even know I’m sick).

        4 years ago Log in to Reply
      3. Wanacure

        Connie, I got Fizer (sp?) ASAP. Also got booster. To prevent side effects (like aches) of any vaccine, take an aspirin or Tylenol 30’ before shot. CDC recommends this.

        4 years ago Log in to Reply
    8. TomH

      I’m not sure what the question is asking.

      4 years ago Log in to Reply
    9. rick phillips

      The 770g is working very well, I look forward to the day when pumps are not needed.

      2
      4 years ago Log in to Reply
      1. Wanacure

        Rick, please let me know when that day arrives. I’m still looking for stem cell or genetics to overcome my self-destructive beta-cell destroying immune response. ( Same problem cancer.)

        4 years ago Log in to Reply
    10. Amanda Barras

      4, but wish I could use my preferred insulin in my preferred pump. Otherwise decent.

      1
      4 years ago Log in to Reply
    11. Kathy Morison

      If the insulin I injected actually absorbed properly I would be the happiest T1 D person on the planet. But that’s my major problem, my sugars keep going up into the 200 and 300 range before I can force the insulin to absorb into my body and cover the sugars. My routine and the amount of insulin I take is spot on, its my body not doing what its supposed to do causing all my issues

      4 years ago Log in to Reply
    12. Becky Hertz

      Not really sure what you’re asking here.

      4 years ago Log in to Reply
    13. Mick Martin

      It’s DEFINITELY better than having to boil a glass syringe and needle prior to each use … and sharpening needles with a stone, and testing urine sugar levels, rather than blood glucose levels, but there’s still a way to go. 😉

      5
      4 years ago Log in to Reply
      1. Steven Gill

        Every time something goes wrong I remember when insulin was first used (from a dog?), prior to that this was also called a wasting disease. They had to limit what a person ate to prevent the dramatic glucose rise, starving the patient. Than I read of boiling the syringes and sharpening the needles which were huge. And here I whimpered about the small needles to the insulin pen (when I was on MDI).

        I self adjusted the pump, stopped using the sensor after the first year due to the costs of supplies (and hit the floor a year ago, laying there 6 hours as my 16 year old Pomeranian and new cat panicked).

        Thankfully when MEDTRONIC offered the newest 770G a few months ago I explained the financial concerns and declined: they offered a program.

        After moving I now see an older physician who generally farms out the TYPE1 diabetics to the nearest hospital, while was terrified of the pump he finally have me back the literature and is now the one providing all my care.

        I’m happy to be diagnosed and living in 2021 was a diabetic. Imagine peeing on a strip to see how much sugar was passing through the kidneys, and the nightmares of injections. No idea how many improvements are coming but I feel so lucky for what have have now, and thankful for what everyone else went through make my life better.

        1
        4 years ago Log in to Reply
    14. Jana Wardian

      It could always be better. I always believe for a cure. Until then, I hope for technology that reduces the work of being a person with diabetes and spending less on diabetes. It’s taken so much over the years.

      1
      4 years ago Log in to Reply
    15. Chip Brookes

      Given the state of technology and knowledge I am very satisfied with my regimen. Could it be better you betcha

      4 years ago Log in to Reply
    16. Bea Anderson

      4- “Overall “care routine.” If it means my care routine as an ideal or sounds good on paper, then yes, satisfied it can produce healthy outcome. If it means satisfied with my flawed human ability to carry out a good plan and system with best tools available, then it drops to a 4. Or the desire for an easier, more perfect care routine…

      I am appreciative having a doable care routine. Here’s the ‘but’. Pump/Sensor costs and continual need to order supplies. Math and science gymnastics to keep insulin in its sweet spot. Insurance concerns. Finding Endo who advocates. Add illness, fatigue, daily schedules, continual interruptions to the best laid plan to have a daily care routine…

      3
      4 years ago Log in to Reply
    17. Ahh Life

      4. Technology and people are improving regularly. The American medical system? Not so much so. (^◡^ ) ( ◡́.◡̀)

      1
      4 years ago Log in to Reply
    18. Molly Jones

      I chose a 4. I am happy with my care routine.
      The things I would improve would be being able to understand the variables affecting my insulin delivery/ sensitivity possibly with the time spent with different classes/ doctors/ nutritionists… getting to know biochemistry better in general. I have never had a Endo have the time to look at my diet/activity/seizure diary.

      4 years ago Log in to Reply
    19. PamK

      I really don’t like using a pump, but so far the doctors I’ve seen since starting on one have refused to let me go back on MDI.

      4 years ago Log in to Reply
    20. Elle

      As soon as I recognized no rndo or primary care dr or staff care or ate even up to date on latest technology I joined T1 support groups. All went virtual now- so I can connect w T1s in Germany( hub of most T1s in world thus most research done) and others such as T1 Sisters and TCOYD and Canada IConnectT1s. I learned things drs NEVER told me. Got books T1 researchers wrote about THINK LIKE A PANCREAS. And T1 Athletes and AgingWithT1. Go to online lecture series with T1 researchers that discuss alpha cell transplants to reverse T1 and easy things like stop eating carbs 6 hours b4 bedtime- gives even and balanced sleep and wake up BG! I just use my drs to refill my Rxs now😀. But my retina specialist must be someone I trust and can work as a team. My Afrezza rep and Dexcom rep are both younger T1s and get great advice from their real T1 experiences too.

      1
      4 years ago Log in to Reply

    On a scale of 1-5, how satisfied are you with your current overall T1D care routine? (1 = the least satisfied, 5 = the most satisfied) Cancel reply

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