Subscribe Now

[hb-subscribe]

Trending News

T1D Exchange T1D Exchange T1D Exchange
  • Activity
    • 56 minutes ago
      Derek West likes your comment at
      Do you know how to test for ketones? Please share more in the comments.
      I test when I have unexpected, or stubbornly high blood glucose that just won't go down. I also test when I feel sick. Testing, for me, involves putting urine on a strip, either by peeing directly or dipping the strip into urine. I may use about 2 or 3 strips in a year. When I test positive, I increase my insulin dosage to a "sick day" level, which can be anywhere from 125% dosage to 400%. I usually start with small increases in dosage, and work my way up until my blood glucose levels even out.
    • 5 hours, 31 minutes ago
      Marty likes your comment at
      Do you know how to test for ketones? Please share more in the comments.
      I test when I have unexpected, or stubbornly high blood glucose that just won't go down. I also test when I feel sick. Testing, for me, involves putting urine on a strip, either by peeing directly or dipping the strip into urine. I may use about 2 or 3 strips in a year. When I test positive, I increase my insulin dosage to a "sick day" level, which can be anywhere from 125% dosage to 400%. I usually start with small increases in dosage, and work my way up until my blood glucose levels even out.
    • 5 hours, 31 minutes ago
      Marty likes your comment at
      Do you know how to test for ketones? Please share more in the comments.
      I have a blood ketone monitor. It works just like a glucometer.
    • 7 hours, 20 minutes ago
      Kathy Hanavan likes your comment at
      Do you know how to test for ketones? Please share more in the comments.
      Perhaps only the poets who love alliteration could love the phrase, “killer ketones.” The ungodly pain experienced is your body eating and devouring itself. 🥵 Ketones are relentless killers. Do not give the bad guys a chance.
    • 7 hours, 26 minutes ago
      atr likes your comment at
      Do you know how to test for ketones? Please share more in the comments.
      I test when I have unexpected, or stubbornly high blood glucose that just won't go down. I also test when I feel sick. Testing, for me, involves putting urine on a strip, either by peeing directly or dipping the strip into urine. I may use about 2 or 3 strips in a year. When I test positive, I increase my insulin dosage to a "sick day" level, which can be anywhere from 125% dosage to 400%. I usually start with small increases in dosage, and work my way up until my blood glucose levels even out.
    • 8 hours, 2 minutes ago
      Judith Halterman likes your comment at
      Do you know how to test for ketones? Please share more in the comments.
      Perhaps only the poets who love alliteration could love the phrase, “killer ketones.” The ungodly pain experienced is your body eating and devouring itself. 🥵 Ketones are relentless killers. Do not give the bad guys a chance.
    • 1 day, 1 hour ago
      Anthony Harder likes your comment at
      Do you have ketone testing strips?
      Hi, Marty. Does your specialist have a source for that claim? It makes little sense that ketones would rise faster than BG since the metabolic pathway is much slower. If there's a source, however, I'd look further into the claim. FWIW, I've been a Type 1 for over 50 years; I can't remember the last time I tested for ketones. I possess no ketone testing strips.
    • 2 days, 4 hours ago
      Marty likes your comment at
      Does your insurance cover injectable glucagon, nasal glucagon, or both?
      Covers it with co pay
    • 2 days, 6 hours ago
      atr likes your comment at
      Does your insurance cover injectable glucagon, nasal glucagon, or both?
      It covers both. I prefer to have the the nasal version as I think it would be easier for someone else to administer.
    • 2 days, 7 hours ago
      Lawrence S. likes your comment at
      Do you have a non-expired glucagon prescription?
      I’ve been T1D for 60 years. As a child my mother didn’t like needles or injections so she just fed me when low. In college, explained use to dorm mates and classmates would’ve been a waste of time. Now married, my wife assumed the role of my mother and doesn’t like using needles on me either. I don’t have glucagon.
    • 2 days, 7 hours ago
      Lawrence S. likes your comment at
      Do you have a non-expired glucagon prescription?
      Yes, always have one or two nasal glucagon kits (Baqsimi) at home in easy to reach locations (ie at bedside and special container in living area) and always keep one with me when I go out ( along with glucose tabs or other simple carbs for treating LBS.). I apparently required injectable glucagon several times as a child and needed injectable glucagon only twice as an adult, both more than 15 years ago . More recently I needed my husband to give me Baqsimi after eating a difficult to dose for, high fat meal. The experience was terrifying so I don’t go anywhere without it now.
    • 2 days, 7 hours ago
      Lawrence S. likes your comment at
      Do you have a non-expired glucagon prescription?
      I actually have 2 non-expired prescriptions. One for Baqsimi and one for Gvoke. I have not filled either of them because they’re $500-600 each.
    • 2 days, 7 hours ago
      Lawrence S. likes your comment at
      Does your insurance cover injectable glucagon, nasal glucagon, or both?
      My Medicare Part D essentially doesn't cover glucagon when any form is nearly $500!
    • 2 days, 22 hours ago
      Amanda Barras likes your comment at
      Do you have a non-expired glucagon prescription?
      Same here. Been as low as 19 (struggling with a vacuum cleaner bag and refused to let it win) but was still able to swallow food. I did used the “red needle” as my husband refers to it once when I went low but was scheduled for surgery and couldn’t eat or drink anything. Only once in 26 years. Fortunate.
    • 3 days, 17 hours ago
      Karen Newe likes your comment at
      Share some of your favorite T1D-related books in the comments:
      Marcus Aurelius Meditations for the benefits of stoicism. Dante’s Inferno for the nine levels of diabetic hell. Kristen Lavransdatter for the benefits of suffering. And best of all, Cervantes Don Quixote for the absurdity of tilting at so many worthless windmills of frenzied diabetic activity.
    • 4 days, 6 hours ago
      Natalie Daley likes your comment at
      Share some of your favorite T1D-related books in the comments:
      Marcus Aurelius Meditations for the benefits of stoicism. Dante’s Inferno for the nine levels of diabetic hell. Kristen Lavransdatter for the benefits of suffering. And best of all, Cervantes Don Quixote for the absurdity of tilting at so many worthless windmills of frenzied diabetic activity.
    • 4 days, 6 hours ago
      atr likes your comment at
      Share some of your favorite T1D-related books in the comments:
      Marcus Aurelius Meditations for the benefits of stoicism. Dante’s Inferno for the nine levels of diabetic hell. Kristen Lavransdatter for the benefits of suffering. And best of all, Cervantes Don Quixote for the absurdity of tilting at so many worthless windmills of frenzied diabetic activity.
    • 4 days, 7 hours ago
      Lawrence S. likes your comment at
      Share some of your favorite T1D-related podcasts in the comments:
      I don't do T1 podcasts.
    • 4 days, 7 hours ago
      Lawrence S. likes your comment at
      Share some of your favorite T1D-related books in the comments:
      Marcus Aurelius Meditations for the benefits of stoicism. Dante’s Inferno for the nine levels of diabetic hell. Kristen Lavransdatter for the benefits of suffering. And best of all, Cervantes Don Quixote for the absurdity of tilting at so many worthless windmills of frenzied diabetic activity.
    • 4 days, 8 hours ago
      Gary Taylor likes your comment at
      Share some of your favorite T1D-related books in the comments:
      Marcus Aurelius Meditations for the benefits of stoicism. Dante’s Inferno for the nine levels of diabetic hell. Kristen Lavransdatter for the benefits of suffering. And best of all, Cervantes Don Quixote for the absurdity of tilting at so many worthless windmills of frenzied diabetic activity.
    • 4 days, 19 hours ago
      Amanda Barras likes your comment at
      Which T1D influencers do you enjoy following?
      Currently it’s the Diabetech, Justin Easter.
    • 5 days, 4 hours ago
      ChrisW likes your comment at
      Share some of your favorite T1D-related podcasts in the comments:
      I don't do T1 podcasts.
    • 5 days, 5 hours ago
      Kathy Hanavan likes your comment at
      Share some of your favorite T1D-related podcasts in the comments:
      TCOYD Diabetes Nerd Your Best T1D Year Think Like a Pancreas
    • 5 days, 5 hours ago
      Kathy Hanavan likes your comment at
      Share some of your favorite T1D-related podcasts in the comments:
      Take Control of Your Diabetes
    • 5 days, 6 hours ago
      Marty likes your comment at
      Share some of your favorite T1D-related podcasts in the comments:
      Take Control of Your Diabetes
    Clear All
Pages
    • T1D Exchange T1D Exchange T1D Exchange
    • Articles
    • Community
      • About
      • Insights
      • T1D Screening
        • T1D Screening How-To
        • T1D Screening Results
        • T1D Screening Resources
      • Donate
      • Join the Community
    • Quality Improvement
      • About
      • Collaborative
        • Leadership
        • Committees
      • Centers
      • Meet the Experts
      • Learning Sessions
      • Resources
        • Change Packages
        • Sick Day Guide
        • FOH Screener
        • T1D Care Plans
      • Portal
      • Health Equity
        • Heal Advisors
    • Registry
      • About
      • Recruit for the Registry
    • Research
      • About
      • Publications
      • COVID-19 Research
      • Our Initiatives
    • Partnerships
      • About
      • Industry Partnerships
      • Academic Partnerships
      • Previous Work
    • About
      • Team
      • Board of Directors
      • Culture & Careers
      • Annual Report
    • Join / Login
    • Search
    • Donate

    How would you best describe the daily burden of T1D? Please select 3 of the options below and share your own in the comments.

    Home > LC Polls > How would you best describe the daily burden of T1D? Please select 3 of the options below and share your own in the comments.
    Previous

    Have you ever used glucagon? If so, when was the last time used it?

    Next

    If you have T1D, have you also been diagnosed with depression? If so, were you diagnosed with depression before or after you were diagnosed with T1D?

    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.

    Related Stories

    " At T1D Exchange, we’re proud to announce our Medical and Research Advisory Team — an accomplished group of leaders in endocrinology, research, and quality improvement. Together, they are redefining what’s possible in type 1 diabetes (T1D) care through rigorous data analysis, innovative research approaches, and real-world implementation. Their collective expertise is central to our mission of improving outcomes for all people living with T1D.  “We’re excited to be working with our advisors given their deep expertise across a broad range of areas in T1D,” said Dave Walton, CEO of T1D Exchange. “Their involvement magnifies our reach, knowledge, and impact. These advisors are shaping the future of diabetes care — driving innovation across research, clinical practice, and quality improvement.”    Meet the Medical & Research Advisory Team  The T1D Exchange Medical and Research Advisory Team brings together four leading endocrinologists, each offering a unique perspective and shared commitment to advancing T1D care:    Jenise Wong, MD, PhD Pediatric endocrinologist at UCSF Benioff Children’s Hospital and Professor of Pediatrics in the Division of Endocrinology at the University of California, San Francisco Focus areas: Diabetes technology adoption and usability; health equity and access to care and technology; community-based and peer-support interventions; culturally responsive care          Jennifer Sherr, MD, PhD Pediatric endocrinologist at Yale Medicine and Professor of Pediatrics in the Division of Endocrinology at Yale School of Medicine in New Haven, Connecticut Focus areas: Clinical trials in diabetes technology (CGM and AID systems), disease-modifying treatments and immunotherapies, and emerging technologies and medications, including continuous ketone monitoring and nasal glucagon     Viral Shah, MD Adult endocrinologist at Indiana University Health and Professor of Medicine in the Division of Endocrinology and Metabolism at Indiana University School of Medicine in Indianapolis, Indiana Focus areas: Diabetes technology and adjunctive therapy trials; translational and data-driven research; T1D complications and bone health         Nestoras Mathioudakis, MD, MHS Adult endocrinologist at Johns Hopkins Medicine and Associate Professor of Medicine at Johns Hopkins University School of Medicine in Baltimore, Maryland Focus areas: AI-driven clinical support tools; EMR-based data analytics for clinical decision making; data-driven quality improvement; health equity in T1D care        This accomplished team’s expertise spans adult and pediatric endocrinology, research, and quality improvement affiliated with leading institutions nationwide. Collectively, they have authored over 500 diabetes publications and secured research funding from organizations such as the National Institutes of Health, Helmsley Charitable Trust, the American Diabetes Association, and Breakthrough T1D — while remaining actively engaged in both clinical care and research.  “These individuals represent an impressive body of work while remaining deeply involved in the day-to-day realities of diabetes care,” said Walton. Their expertise covers the full spectrum of T1D care — from AI and predictive analytics to complication prevention, automated insulin delivery, continuous glucose and ketone monitoring, GLP-1 treatments, health equity, mental health, autoantibody screening, and disease prevention.    Turning insight into impact  The team’s work goes beyond research, focusing on translating insights into real-world practice. By leveraging data to scale best practices, the goal is to drive meaningful, measurable change across clinics and communities.  “Our advisors will help to extend our impact — whether through QI strategy, research innovation, funding opportunities, or new data-driven solutions,” said Walton. “We want to take what’s working at individual centers and spread that as broadly as possible.”   He added, “As a Collaborative, we’re also focused on advanced population health strategies such as exploring predictive data models to identify risks earlier and intervene before complications even begin to happen.”    The power of the T1D Exchange Quality Improvement Collaborative  Central to this work is the T1D Exchange Quality Improvement Collaborative (T1DX-QI) — a nationwide network of clinics working together to improve care through shared data, benchmarking, and evidence-based practices.  “I’m thrilled to serve as a Medical Advisor for T1D Exchange, because I’ve seen firsthand the impact this network can have on patient care,” said Dr. Nestoras Mathioudakis. “T1D Exchange is the premier organization for quality improvement in type 1 diabetes, with unparalleled assets like a large EHR database and robust patient registry.”  He added that he is excited to apply his expertise in EHR research and big data analytics to generate real-world evidence across diagnosis, management, and outcomes.  Dr. Viral Shah echoed that perspective, reflecting on T1DX-QI's evolution: “I have been involved with T1D Exchange since its early days and have had the privilege of witnessing how it has transformed the quality of diabetes care across the United States. I’m delighted to return as a Medical Advisor.”  He emphasized the importance of accelerating impact. “I look forward to working closely with the team to accelerate the evidence generation and to help translate these insights to improve patient care.”   Dr. Jenise Wong highlighted the visible impact of T1DX-QI on the delivery of care. "I’m truly honored and grateful to be working with T1D Exchange as a Medical Advisor. T1DX-QI is a remarkable resource for centers that are using continuous process improvement to improve the quality of care for people living with diabetes.”  “Diabetes centers working with T1DX –QI have done amazing work using QI methodology to make care accessible and equitable for all people with diabetes,” she said. “It’s inspiring to be a part of a collaborative in which centers have been creative and thoughtful with initiatives to address individual and systemic challenges to care, improving clinical outcomes as well as the patient experience."  Looking ahead, Dr. Sherr highlighted the opportunity to build on the existing strong foundation. “I’m very excited to be working as a Medical Advisor for T1D Exchange,” she said. “It’s a privilege to help shape what comes next for a group that’s already doing such impactful work.”  “Sharing what’s happening in clinical practice, benchmarking across centers, and understanding outcomes is how we figure out what’s working, what’s not, and where we go next,” she said.      The future of T1D care   With this team’s vision and expertise, T1D Exchange is positioned to accelerate progress in T1D care — bridging research and real-world practice to drive meaningful, measurable impact.  Together, we look forward to advancing innovation and improving outcomes for everyone affected by type 1 diabetes.   "

    8 hours ago  
    Meet the Expert

    Meet the Expert: Improving Diabetes Care Through Precision Medicine 

    Jewels Doskicz, 6 days ago 8 min read  
    Meet the Expert

    Meet the Expert: Bridging Research, Technology, and Real-World Care 

    Jewels Doskicz, 1 week ago 9 min read  
    Insulin & Meds

    Ask the Expert: Diana Isaacs on Benefits, Risks, and Real-World Use of GLP-1s in T1D 

    Jewels Doskicz, 2 weeks ago 6 min read  
    Meet the Expert

    Meet the Expert: Advancing Equity, Improving Outcomes, and Reducing the Burden of T1D 

    Jewels Doskicz, 4 weeks ago 8 min read  
    Our team

    Spotlight on T1DX-QI: Clinical Leadership Committee 

    Jewels Doskicz, 1 month ago 6 min read  

    56 Comments

    1. John McHenery

      Been injecting/infusing for so long, 50 years plus, it is my norm. It is a nuisance but better than the alternative of being in a box.

      13
      5 years ago Log in to Reply
    2. ConnieT1D62

      I no longer consider it to be a daily burden. After living with it in my body for almost 60 years it is what it is – a complex 24/7 self care duty. I do what I need to do to experience all the beauty and wonder that a satisfying life has to offer. And I give thanks everyday for the gift of life.

      8
      5 years ago Log in to Reply
    3. Lee Johnson

      Xxx

      5 years ago Log in to Reply
    4. George Lovelace

      57 years but now with CIQ – I would add “Daring” to Constant and Challenging

      3
      5 years ago Log in to Reply
    5. TEH

      Ubiquitous. Always there. CGI helped my control significantly. But i think about my BG levels 15 or 20 times a day.

      4
      5 years ago Log in to Reply
    6. connie ker

      24/7/365 for the rest of your life. It’s a full time job you didn’t apply for, don’t get paid for with no time off from. Worse yet, you can’t quit. This constant crush can certainly lead to diabetes burnout.

      3
      5 years ago Log in to Reply
    7. dave hedeen

      Key positive word missing, innovative. I am waiting for newest closed loop system

      4
      5 years ago Log in to Reply
    8. RACHEL BLEVINS

      Overwhelming

      2
      5 years ago Log in to Reply
    9. Lawrence Stearns

      The first thing that came to mind was “life altering.” When I think about the many decisions in my life, my diabetes care always gets factored in. It’s not just diabetes, but other autoimmune issues as well. Such as, celiac disease, constantly factoring into my eating and social habits. It is a lifestyle that is often misunderstood by others who don’t have these limitations. Depending upon the circumstances, it is all of the word choices, except “impossible.”

      1
      5 years ago Log in to Reply
    10. Katherine Kiger

      (US-based) Expensive!

      4
      5 years ago Log in to Reply
    11. Carol Meares

      I checked all but impossible after not seeing the check 3 in the question. Managing with diabetes is not impossible but the daily burden is easily characterized by each of your other descriptors.

      1
      5 years ago Log in to Reply
    12. Ken Raiche

      As I’ve said for many years it can only get better depending on your point of view. It’s truly what you make of it and fortunately for anyone who’s fairly name at the T1D lifestyle much easier to manage with the right open minded doctor and more importantly the right equipment. Got to love the recent advancements with CGM and infusion just a few more improvements and it will almost be like not being a diabetic, yea right for us living with diabetes as the old saying there’s two certainties in life death a taxes and for those with diabetes three the never ending need for insulin which equates to $$$$.

      4
      5 years ago Log in to Reply
    13. P-O Heidling

      No burden at all. My diabetes has very little impact on my daily life anymore. I take 2-3 injections per day (often the same amount of insulin every day), which I compare to as much burden as brushing my teeth.
      I eat good delicious food, exercise when I want to and have no other “classic” diabetic injuries. HbA1c in non-diabetic range.

      T1D since 1981, keto/LCHF (<20 gr carb/day) since 2010.

      Before 2010, my life was very much affected, with constant "highs and lows", early eye problems, 80% more insulin compared to today, eating-planning-fixing with the roller coaster bg values. So glad those days are gone…

      2
      5 years ago Log in to Reply
    14. Sahran Holiday

      Choices are incomplete. Challenges are minimal. Except for insulin made much easier with pumps and CGMs a little monitoring and adjusting for activity. Exercise and eating properly same as everyone else.

      5 years ago Log in to Reply
    15. Andrew Stewart

      The 3 C’s: constant, challenging and complex best describe for me what the daily burden of T1D success is all about. I chose these over their synonyms because I’m optimistic and want to stay away from terms that connote failure because in spite of the constant, challenging and complex nature of T1D, we can do this, we are doing this, we are learning daily the nuance and variables of our T1D management and striving towards our success.

      Perfection does not exist; stay positive, learn, move forward, REPEAT.

      9
      5 years ago Log in to Reply
      1. Rose Lentzke

        Nicely stated.

        5 years ago Log in to Reply
      2. Rose Lentzke

        Nicely statutes. Staying positive is the key;)

        5 years ago Log in to Reply
    16. Mary Dexter

      Misunderstood

      5
      5 years ago Log in to Reply
      1. lis be

        agree 100%

        1
        5 years ago Log in to Reply
    17. BARRY HUNSINGER

      There is no est for the weary. It is a 24/7 never-ending problem. Even when you get to a good number it can spiral out of range in a heartbeat for no good reason.

      2
      5 years ago Log in to Reply
    18. KCR

      I wish the question had been worded a bit differently, using “management” instead of “burden” so as not to prime respondents to answer from a negative bias.

      When D management goes smoothly–no pump issues, blood glucose in range, adequate time to pre-bolus–then day-to-day management is just something I know I need to do. When I’m coping with post-exercise lows or unexplained highs, then taking care of my T1D can indeed feel burdensome or troublesome.

      5
      5 years ago Log in to Reply
    19. Kevin McCue

      Never ending

      2
      5 years ago Log in to Reply
    20. lis be

      exhausting

      2
      5 years ago Log in to Reply
    21. AnitaS

      Burdensome and challenging were up there for me. I take it in stride since I have been doing this for close to 50 years, but it can be challenging since my day to day activities can change so figuring out how much insulin I may need is not always easy. Always having to check your blood sugar level to see if it is advisable to eat or exercise now or later. Knowing if you exercised enough during the day that I may have to change my pump setting for the night. Remembering to turn on and off the activity setting at the correct times when deciding I want to go for a walk. There are just so many variables in a life that affect how much insulin I may need. I am so thankful for pumps and cgms.

      2
      5 years ago Log in to Reply
    22. Andrea Graebner

      Very scary, I test positive for insulin antibodies. 7.4

      1
      5 years ago Log in to Reply
      1. P J

        Are you a diagnosed Type 1 diabetic or possible future 1? If you are not check out ways to help keep your beta cells functioning- no one path, good luck and best wishes.

        1
        5 years ago Log in to Reply
    23. P J

      I am always striving to do my best and that gets tiring at the worst of times. I’ve been eating one meal a day for a while and my blood sugars are much more in line- eating according to ada just made me slave to my insulin and I felt like beef being prepared for market.

      5 years ago Log in to Reply
    24. Marla Peaslee

      I have never, ever, even considered T1D a burden. Who writes these daily questions? How to phrase a question 101 pops into my head. I am not discounting others who feel differently.

      3
      5 years ago Log in to Reply
    25. Pauline M Reynolds

      To me, it’s the blue balloon that I must keep in the air through my whole life at all times, no matter what I’m doing or thinking.

      3
      5 years ago Log in to Reply
    26. Judy Hampton

      It’s the only life I’ve known. When I was 10 years old my pediatrician told me it would be like brushing my teeth. That was in 1960. I think about that every time I take my morning injection – LOL. I am grateful to still be enjoying life.

      3
      5 years ago Log in to Reply
    27. Jana Wardian

      My husband has nailed this. He says diabetes is the math problem that never ends!

      8
      5 years ago Log in to Reply
    28. Kim Murphy

      On some days all of these words could be used.

      5 years ago Log in to Reply
    29. Becky Hertz

      You sure set up a negative mindset by using the term daily burden. T1D actually saved my life! I was in a kidney study and due to frequent blood draws the staff noticed my rbc’s were increasing. Long story short, I had a renal tumor (unrelated to T1D) that they thought was stage 4 but turned out to be stage 3a. I’m down one Kidney now but I’m still living my best life!

      2
      5 years ago Log in to Reply
    30. Louise Robinson

      I was dx’d while in my late 20’s in 1976. In my 45 years living with Type 1, I’ve concluded that the only “constant” of Type 1 diabetes is that it will be variable. What works on one day, may not work the next. We need to monitor our BGs and adapt accordingly. The more knowledge we acquire about diabetes and how it affects us, the better prepared we become to take the needed actions to control and manage our disease. Luckily, the tools and technology we now have make that easier than it was 45 years ago. I’m not happy that I have diabetes but I’ve accepted my diagnosis, tried to learn as much as possible about it and am determined to make those lifestyle choices that may help me avoid its debilitating complications.

      4
      5 years ago Log in to Reply
    31. Kristine Warmecke

      Why is this question so negative? I’ve never thought of T1D as a burden. Anyone can make anything a burden with an attitude like this. smh
      The only burden is the US Pharma companies making it impossible for us to afford/obtain the one thing we need to live.

      5
      5 years ago Log in to Reply
    32. Virginia Barndollar

      It’s certainly 24/7, but that’s ok. Been living with T1DM for 56 years. Still hiking, mountaineering, climbing and running. Denali 2023.

      5 years ago Log in to Reply
    33. Ahh Life

      Challenging, complex, complicated: the big 3, as someone else mentioned. That’s because of my personality type and how I view the world in general. 【 ͡❛ ͜ʖ ͡❛】

      However, unlike others, I invariably first read the answers trying to guess which question is being asked. I assumed the question was about the burden of navigating the American health care system. 【 ͠❛ ⍨ ͠❛ 】

      4
      5 years ago Log in to Reply
      1. ConnieT1D62

        Ahh Life, you stated ” … the burden of navigating the American health care system”
        HAH!!! that encapsulates the most challenging, complex, complicated, and fearsome aspects of managing a life with T1D in today’s world.

        1
        5 years ago Log in to Reply
    34. Molly Jones

      I chose 24/7, constant, and challenging.

      I need to pay attention constantly to my insulin and BG or it can go out of control. This may happen at times for unknown reasons, but as long as supplies are available my BG can be controlled.

      This condition and it’s cause is understood, which I am very grateful for! It can be controlled. I would rather have T1D than so many other conditions if I had the choice.

      2
      5 years ago Log in to Reply
    35. David Smith

      I don’t consider T1D a burden. It’s simply a medical condition that my genes set me up for. The constant management of it isn’t a burden, either. What other chronic condition can be managed so closely? The ability to manage it at all is a gift that has prolonged my life, and the technology to facilitate that management has been steadily improving. But I also recognize that not everyone with T1D has access to that technology, and that needs to change!

      6
      5 years ago Log in to Reply
    36. BOB FISK

      I’m struck by the fact that all of your descriptors are negative, or at least border on negative. I guess that you could describe T1D as “relentless,” but I chose to use the “constant” choice. Even there, I am not focused on it every minute of the day. It is something that I have in the back of my mind most of the time, and use the data I have to manage my blood glucose level.

      4
      5 years ago Log in to Reply
      1. BOB FISK

        In addition, I’m wondering why you didn’t include descriptors such as “satisfying” or “feeling of accomplishment” in the list. I get positive feedback when I keep my glucose levels where I want them.

        1
        5 years ago Log in to Reply
    37. LizB

      I agree with other that calling it a “daily burden” is not the best. The three answers I chose are challenging, complex and complicated. I don’t think anyone would disagree that Type 1 is any of those three. I can count my carbs to the gram but some days my bolus seems to be too little and other days too much. It could be complex because I ignored the fat & protein and focused only on the carbs. Complicated because I might be under a lot of stress, or due to hormones. So many factors make T1D challenging.

      4
      5 years ago Log in to Reply
    38. Sharon Lillibridge

      45 years ago I had a nervous breakdown and was told that it “burned out” my pancreas but for 20 years I could eat and drink whatever I wanted with one shot of NPH and one shot of regular….knew what my blood sugar was always without a test, never was ill from it in any way and had NO complications. Until I caught a Norovirus, was in ICU for three days and have been disregulated for the last6 years. The J&J vaccine caused my blood sugars to yo yo between 30 and 500 for 68 days. I have recov ered from that but still can only eat a very limited diet.

      1
      5 years ago Log in to Reply
    39. Twinniepoo74

      I would also say the seizures that comes from having too many lows and high. Unfortunately I am a uncontrolled diabetic and in the past 7 years have seizures from my disease.

      5 years ago Log in to Reply
    40. Clare Fishman

      Using a DIY Loop with Omnipod and Dexcom I selected Challenging because regardless of the mode of delivery, using insulin and trying to be a pancreas without the tools that a pancreas has is challenging but none of the other words worked. I would have used “routine”,

      5 years ago Log in to Reply
    41. Amy Wolk

      I use TSlim Control IQ which has definitely decreased the the. burden. But until we have at least a working cure diabetes is always there 24/7

      5 years ago Log in to Reply
    42. Christina Trudo

      there may be shades of difference, but it seems to me that “24/7, unrelenting, relentless, and perhaps constant are more or less synonymous. maybe constant has a little less emotional shading.

      5 years ago Log in to Reply
    43. Jillmarie61

      I don’t describe it as a burden at all. It’s just something I have always dealt with all my my since I was diagnosed as a diabetic at 9mos old. I don’t ever remember not having diabetes, so it is just a part of my everyday life. To me it’s more like this is just normal. Not a burden at all.

      5 years ago Log in to Reply
    44. Leona Hanson

      My daily burden is my high and lows even with the cgm and always when I’m trying to do something like sewing it drives me crazy

      5 years ago Log in to Reply
    45. Rafaela

      Frustrating

      5 years ago Log in to Reply
    46. Vorisha

      The daily burden – nonexistent.
      I was diagnosed at age 10 in 1984 and what can I say, nothing in the list made sense to me to select. My treatment is not perfect but it is automatic. Very little conscious thought to it most days. I don’t worry about numbers (carb counts, A1C, blood glucose) but pay attention to how my body feels and react accordingly. I sometimes think we are taught to get too caught up with the numbers and that driving for perfect is the only way to treat. Yes it can be annoying when low blood sugar happens at an inconvenient time or you’re trying to figure out how to carry snack/insulin with you when you don’t have a pocket and you’re not in the mood to bring a bag … that’s all minor stuff to me.

      5 years ago Log in to Reply
    47. Velika Peterson

      Exhausting

      5 years ago Log in to Reply
    48. Steve Gold

      It’s the disease that never lets you forget it’s there. With better tools like glucometers and insulin pumps it’s come a long way. However, it’s always in the back of your mind, especially when eating.

      5 years ago Log in to Reply
    49. Chris Albright

      Hum…… In reality I could have selected all the options that were provided. T1 is a disease you wake up with, live through the day with, and you go to bed with (not to mention the number of days during the week it interrupts your sleep and wakes you up to just remind you….. YOU HAVE DISABETES……) OK, crying over…, suck it up and get back to the battle 🙂

      5 years ago Log in to Reply
    50. Leona Hanson

      Since I don’t feel my lows or highs it gets difficult the cgm goes of like all day having uncontrollable diabetes but I try to keep it manageable

      5 years ago Log in to Reply

    How would you best describe the daily burden of T1D? Please select 3 of the options below and share your own in the comments. Cancel reply

    You must be logged in to post a comment.




    101 Federal Street, Suite 440
    Boston, MA 02110
    Phone: 617-892-6100
    Email: admin@t1dexchange.org

    Privacy Policy

    Terms of Use

    Follow Us

    • facebook
    • twitter
    • linkedin
    • instagram

    © 2024 T1D Exchange.
    All Rights Reserved.

    © 2023 T1D Exchange. All Rights Reserved.
    • Login
    • Register

    Forgot Password

    Registration confirmation will be emailed to you.

    Skip Next Finish

    Account successfully created.

    Please check your inbox and verify your email in the next 24 hours.

    Your Account Type

    Please select all that apply.

    I have type 1 diabetes

    I'm a parent/guardian of a person with type 1 diabetes

    I'm interested in the diabetes community or industry

    Select Topics

    We will customize your stories feed based on what you select here.

    [userselectcat]

    We're preparing your personalized page.

    This will only take a second...

    Search and filter

    [searchandfilter slug="sort-filter-post"]