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    • 42 minutes ago
      Bruce Schnitzler likes your comment at
      How confident are you about having consistent access to the diabetes supplies and medication you need?
      I broke down for the first time in 25 years and bought a bottle of insulin because I think I may have thrown a bottle out with the box. Medicare wouldn’t fill the prescription because it was too early. I just didn’t want the fight and worry. I’m not sure that’s what happened but it’s the only explanation. Also, I live in Florida and the threat of losing power is always there. I should get a generator but I’m a little afraid of them and you still can’t be sure you have access to propane. If my insulin goes bad, I’m not sure I could get refills. My back up plan is to leave before hurricane or go to a hospital. But it is all just causes concern.
    • 1 hour, 14 minutes ago
      Karen Newe likes your comment at
      How often do people confuse type 1 and type 2 diabetes in your experience?
      The most common comment: but you aren’t heavy. That’s when we get into the differences. A relative tried to tell me that insulin makes you lose weight. But when we last discussed this, one of you said it best: if it isn’t in their circle of experience, why would they know or care?
    • 1 hour, 32 minutes ago
      KSannie likes your comment at
      How satisfied are you with your current insulin pump brand/model?
      Very! However, I wish I could use Fiasp insulin in the Tandem pumps.
    • 1 hour, 33 minutes ago
      KSannie likes your comment at
      How satisfied are you with your current insulin pump brand/model?
      Somewhat satisfied with TSlimX2. Not because of pump shortcomings, but because of the sheer insanity of trying to get routine supplies through the American health care system. My current situation, to wit: "I am experiencing extreme frustration with Medicare that, 1) has an inoperable website, and 2) has an inoperable AI phone answering service. Consequently, I can no longer acquire needed supplies to operate the tSlimX2, particularly the T:Lock TruSteel 8mm 32.” This situation has persisted for 2 months. 😬
    • 1 hour, 33 minutes ago
      KSannie likes your comment at
      How satisfied are you with your current insulin pump brand/model?
      My first reaction was Very Satisfied but there is always room for improvement. I’d like a pump design that wasn’t meant to be worn on a belt just for men. To wear a dress, I have to only get those with pockets (and on both sides because opposite sides cause the CGM to lose contact) and put a button whole in each. The clip shows horribly on blouses worn out. I’ve tried the leg attachments and they never stay secure. I’m not big enough to wear it in my bra. All minor inconveniences. I’d like one that doesn’t keep alarming 20 minutes after I’ve eaten, although I get it that it is there to save my life. Again minor. Ask about CGMs (probably tomorrow’s question): lately I’ve had trouble removing the sensor from my arm without actually ripping off a strip of skin or very bad bruising. I’ve read about using baby oil for removal. That does help. I’m a rip it off fast person, but that didn’t work so well.
    • 3 hours ago
      Patricia Dalrymple likes your comment at
      How satisfied are you with your current insulin pump brand/model?
      Try Uni-Solve Adhesive Remover (smith&nephew)- wipe it on wait a minute to let it work and it will come off easy. at least it works great for me and I've tried several different brands, I use it for CGM & Omnipod removal
    • 10 hours ago
      Sandy Norman likes your comment at
      How satisfied are you with your current insulin pump brand/model?
      Somewhat satisfied with TSlimX2. Not because of pump shortcomings, but because of the sheer insanity of trying to get routine supplies through the American health care system. My current situation, to wit: "I am experiencing extreme frustration with Medicare that, 1) has an inoperable website, and 2) has an inoperable AI phone answering service. Consequently, I can no longer acquire needed supplies to operate the tSlimX2, particularly the T:Lock TruSteel 8mm 32.” This situation has persisted for 2 months. 😬
    • 17 hours, 26 minutes ago
      kristina blake likes your comment at
      How often do people confuse type 1 and type 2 diabetes in your experience?
      There are several conversations about this across social media. Many people chime in and vote for a new, more accurate name for type 1.. some of the popular alternatives- Pancreatic Autoimmune Disease, Beta Cell Destruction Disease, Autoimmune Diabetes, Autoimmune Insulin Failure, Autoimmune Absolute Insulin Deficiency (AAID)
    • 17 hours, 27 minutes ago
      kristina blake likes your comment at
      How often do people confuse type 1 and type 2 diabetes in your experience?
      In my experience people have heard of Type 2 Diabetes so if I say Type 1 that makes sense in that if there is a Type 2 there must be a Type 1 also. That is the extent of their understanding. In healthcare there is a bigger failure where "diabetes" or "type 2 diabetes" is used as a shorthand of a set of conditions often seen together. See any research paper by any cardiologist ever. This lack of precision leads to incorrect risk evaluations and incorrect treatment of people with diabetes caused by other factors including autoimmune aka Type 1.
    • 17 hours, 27 minutes ago
      kristina blake likes your comment at
      How often do people confuse type 1 and type 2 diabetes in your experience?
      The most common comment: but you aren’t heavy. That’s when we get into the differences. A relative tried to tell me that insulin makes you lose weight. But when we last discussed this, one of you said it best: if it isn’t in their circle of experience, why would they know or care?
    • 17 hours, 28 minutes ago
      kristina blake likes your comment at
      How often do people confuse type 1 and type 2 diabetes in your experience?
      In my experience the average person does not know the difference. It does not help that the commercials on TV just say diabetes and do not differentiate.
    • 19 hours, 40 minutes ago
      Kristi Warmecke likes your comment at
      How satisfied are you with your current insulin pump brand/model?
      Somewhat satisfied with TSlimX2. Not because of pump shortcomings, but because of the sheer insanity of trying to get routine supplies through the American health care system. My current situation, to wit: "I am experiencing extreme frustration with Medicare that, 1) has an inoperable website, and 2) has an inoperable AI phone answering service. Consequently, I can no longer acquire needed supplies to operate the tSlimX2, particularly the T:Lock TruSteel 8mm 32.” This situation has persisted for 2 months. 😬
    • 22 hours, 13 minutes ago
      Lee Tincher likes your comment at
      How satisfied are you with your current insulin pump brand/model?
      If I could get a CGM that is consistent and predictable I'd be very happy with the Twiist or the Tandem. The weak point with pumps used to be infusion sites, but now that we are relying on poor performing technology to support potentially great algorithms itis quite frustrating.
    • 1 day ago
      Beckett Nelson likes your comment at
      How satisfied are you with your current insulin pump brand/model?
      My first reaction was Very Satisfied but there is always room for improvement. I’d like a pump design that wasn’t meant to be worn on a belt just for men. To wear a dress, I have to only get those with pockets (and on both sides because opposite sides cause the CGM to lose contact) and put a button whole in each. The clip shows horribly on blouses worn out. I’ve tried the leg attachments and they never stay secure. I’m not big enough to wear it in my bra. All minor inconveniences. I’d like one that doesn’t keep alarming 20 minutes after I’ve eaten, although I get it that it is there to save my life. Again minor. Ask about CGMs (probably tomorrow’s question): lately I’ve had trouble removing the sensor from my arm without actually ripping off a strip of skin or very bad bruising. I’ve read about using baby oil for removal. That does help. I’m a rip it off fast person, but that didn’t work so well.
    • 1 day, 1 hour ago
      John Barbuto likes your comment at
      How satisfied are you with your current insulin pump brand/model?
      I have been using a insulin smart pen for the last 2 years; I find that it meets my current needs to ensure good management and results
    • 1 day, 2 hours ago
      Lawrence S. likes your comment at
      How satisfied are you with your current insulin pump brand/model?
      Somewhat satisfied with TSlimX2. Not because of pump shortcomings, but because of the sheer insanity of trying to get routine supplies through the American health care system. My current situation, to wit: "I am experiencing extreme frustration with Medicare that, 1) has an inoperable website, and 2) has an inoperable AI phone answering service. Consequently, I can no longer acquire needed supplies to operate the tSlimX2, particularly the T:Lock TruSteel 8mm 32.” This situation has persisted for 2 months. 😬
    • 1 day, 2 hours ago
      Lawrence S. likes your comment at
      How satisfied are you with your current insulin pump brand/model?
      My first reaction was Very Satisfied but there is always room for improvement. I’d like a pump design that wasn’t meant to be worn on a belt just for men. To wear a dress, I have to only get those with pockets (and on both sides because opposite sides cause the CGM to lose contact) and put a button whole in each. The clip shows horribly on blouses worn out. I’ve tried the leg attachments and they never stay secure. I’m not big enough to wear it in my bra. All minor inconveniences. I’d like one that doesn’t keep alarming 20 minutes after I’ve eaten, although I get it that it is there to save my life. Again minor. Ask about CGMs (probably tomorrow’s question): lately I’ve had trouble removing the sensor from my arm without actually ripping off a strip of skin or very bad bruising. I’ve read about using baby oil for removal. That does help. I’m a rip it off fast person, but that didn’t work so well.
    • 1 day, 2 hours ago
      Gerald Oefelein likes your comment at
      How satisfied are you with your current insulin pump brand/model?
      Somewhat satisfied with TSlimX2. Not because of pump shortcomings, but because of the sheer insanity of trying to get routine supplies through the American health care system. My current situation, to wit: "I am experiencing extreme frustration with Medicare that, 1) has an inoperable website, and 2) has an inoperable AI phone answering service. Consequently, I can no longer acquire needed supplies to operate the tSlimX2, particularly the T:Lock TruSteel 8mm 32.” This situation has persisted for 2 months. 😬
    • 1 day, 14 hours ago
      Kate Kuhn likes your comment at
      How often do people confuse type 1 and type 2 diabetes in your experience?
      In my experience the average person does not know the difference. It does not help that the commercials on TV just say diabetes and do not differentiate.
    • 1 day, 14 hours ago
      Kate Kuhn likes your comment at
      How often do people confuse type 1 and type 2 diabetes in your experience?
      What? We’re now advertising in this space? Delete this post!
    • 1 day, 15 hours ago
      Neha Shah likes your comment at
      Have you had a Coronary Artery Calcium (CAC) Scan? (The American Diabetes Association suggests this imaging tool, depending on age and years with T1D, to assess heart risk by measuring calcium buildup in your arteries.)
      Yes, I had one done and the results were very high in the upper 400s. I have my wonderful cardiologist to thank for recommending it as even after a normal stress test that was still somewhat suspicious. He thought further testing was advisable due to my 65 years of diabetes. The complaints that I had been having for years were not terribly specific, but just overall being way more exhausted than I thought I should be for my age and a bit of shortness of breath, but no chest pain. My doctors had been just saying that I was probably out of shape and that was what was causing the symptoms but this doctor really was proactive. This test shows calcium buildup, of course, in the arteries which is somewhat different than fatty plaque buildup in the arteries that can only be seen at the Cath Lab. My next step was to go to the Cath Lab where they found four major blockages in my heart and thank goodness we found them. I eventually ended up having four stents put in during two additional procedures. The last one was very stubborn because of the amount of calcium and I had to go to the university of Washington where they were able to do a procedure to drill the calcium out of the artery before they could get in there to place the stent. Heart disease is a very real concern for those of us with long-term diabetes, and although I am a retired dietitian and have always eaten an excellent diet with yearly lipid panel results looking excellent this still happened. The procedure took less than an hour and they do put an iodine die in your vein to make everything easier to see. My Medicare Advantage Plan paid for it except for my copayment which I believe was around $300 which is similar to what I have to pay for things like an MRI. The doctor does have to justify this test by certain symptoms and other previous test results.
    • 1 day, 19 hours ago
      lis be likes your comment at
      How often do people confuse type 1 and type 2 diabetes in your experience?
      In my experience people have heard of Type 2 Diabetes so if I say Type 1 that makes sense in that if there is a Type 2 there must be a Type 1 also. That is the extent of their understanding. In healthcare there is a bigger failure where "diabetes" or "type 2 diabetes" is used as a shorthand of a set of conditions often seen together. See any research paper by any cardiologist ever. This lack of precision leads to incorrect risk evaluations and incorrect treatment of people with diabetes caused by other factors including autoimmune aka Type 1.
    • 1 day, 19 hours ago
      lis be likes your comment at
      How often do people confuse type 1 and type 2 diabetes in your experience?
      In my experience the average person does not know the difference. It does not help that the commercials on TV just say diabetes and do not differentiate.
    • 1 day, 22 hours ago
      KCR likes your comment at
      Have you had a Coronary Artery Calcium (CAC) Scan? (The American Diabetes Association suggests this imaging tool, depending on age and years with T1D, to assess heart risk by measuring calcium buildup in your arteries.)
      I have, and I do show calcium build up and hardening of the arteries. No action has been taken yet at this time. However, I am taking Repatha for better control of my cholesterol and it has been working great.
    • 1 day, 22 hours ago
      KCR likes your comment at
      Have you had a Coronary Artery Calcium (CAC) Scan? (The American Diabetes Association suggests this imaging tool, depending on age and years with T1D, to assess heart risk by measuring calcium buildup in your arteries.)
      Yes, I had one done and the results were very high in the upper 400s. I have my wonderful cardiologist to thank for recommending it as even after a normal stress test that was still somewhat suspicious. He thought further testing was advisable due to my 65 years of diabetes. The complaints that I had been having for years were not terribly specific, but just overall being way more exhausted than I thought I should be for my age and a bit of shortness of breath, but no chest pain. My doctors had been just saying that I was probably out of shape and that was what was causing the symptoms but this doctor really was proactive. This test shows calcium buildup, of course, in the arteries which is somewhat different than fatty plaque buildup in the arteries that can only be seen at the Cath Lab. My next step was to go to the Cath Lab where they found four major blockages in my heart and thank goodness we found them. I eventually ended up having four stents put in during two additional procedures. The last one was very stubborn because of the amount of calcium and I had to go to the university of Washington where they were able to do a procedure to drill the calcium out of the artery before they could get in there to place the stent. Heart disease is a very real concern for those of us with long-term diabetes, and although I am a retired dietitian and have always eaten an excellent diet with yearly lipid panel results looking excellent this still happened. The procedure took less than an hour and they do put an iodine die in your vein to make everything easier to see. My Medicare Advantage Plan paid for it except for my copayment which I believe was around $300 which is similar to what I have to pay for things like an MRI. The doctor does have to justify this test by certain symptoms and other previous test results.
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    How much do you think your relatives outside of your immediate family know about T1D? Select all of the statements that you think are true for you.

    Home > LC Polls > How much do you think your relatives outside of your immediate family know about T1D? Select all of the statements that you think are true for you.
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    For how many years have you (or your loved one) been living with T1D so far?

    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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    15 Comments

    1. Janice B

      Sad but true that the majority of my family does not understand the difference between T1D or T2D. Or what my devices or insulin does. They think my pump takes care of everything.

      4
      5 years ago Log in to Reply
    2. Mary Dexter

      Some of my relatives think I should be over this, as if it were a bad cold, and resent that it still inconveniences them.

      1
      5 years ago Log in to Reply
    3. Ernie Richmann

      I am type 1 diagnosed after age 57. Some doctors insist I am type 2. My endo says I am type 1.

      5 years ago Log in to Reply
    4. T1DGJ

      When the subject arises, I say, “T2 is most people you know. They still produce some insulin. Either not enough, or their body doesn’t use it well. My T1 means my body No longer produces insulin. So when you eat, your body sends insulin to turn your food into energy. My body does not make any, so I have to “shoot it in” to process my food.”

      5 years ago Log in to Reply
    5. Sahran Holiday

      Type 1, few beyond my immediate family know. Don’t discuss it. Better things to talk about.

      5 years ago Log in to Reply
    6. Sherolyn Newell

      I was diagnosed TID around 55 years old, so it’s new to my family. I have one sister who still asks me “can you eat…?” I think my three sisters pretty much understand it though, my sons as well. Extended family doesn’t, except the ones that have asked me questions about it.

      5 years ago Log in to Reply
    7. Denise Lyons

      Diagnosed at 50 so this is new for even my immediate family. I’ve known the basic differences between type 1 and 2 but before my diagnosis I was pretty ignorant of diabetes tech so I don’t fault my family for not understanding it. Definitely alot of people think my pump handles it, before diagnosis that’s what I thought as well. So I try to educate because just over a year ago I was equally as ignorant.

      5 years ago Log in to Reply
    8. Janis Senungetuk

      Their knowledge and interest is very limited.

      1
      5 years ago Log in to Reply
    9. ConnieT1D62

      I have often been the one to explain and educate my immediate and extended family members about diabetes – the difference between T1 and T2, the role of insulin in the body, what a person with diabetes can eat, that diabetes of all types (T1 or T2) can occur in adults and children of all ages and at any age – from as young as infancy into ripe old age, and that T1 diabetes does not turn into T2 diabetes when a child goes into adulthood.

      In my family of origin, there is a history of youth onset T1 diabetes and LADA; as well as youth onset pre-diabetes and T2 diabetes, and adult onset pre-diabetes and T2 diabetes on both sides extending through first, second and third cousins. Despite a full spectrum of diabetes there still a lot of denial, false beliefs and misunderstanding amongst some of my relatives.

      5 years ago Log in to Reply
    10. connie ker

      When I was trying to figure out what was happening to my body at the age of 49 other than menopause, even the Drs. are very confused about the difference between type 1 and type 2. I was considered a type 2, type 1 and 1/2, and a type 1 finally with LADA. 23 years later LADA is now the diagnosis term that was misunderstood. When in the hospital or nursing home care, type 1s go by the same chart as type 2 for insulin management. This should be changed as well.

      2
      5 years ago Log in to Reply
    11. Brandon Denson

      I believe they have a general idea about my devices and insulin usage but don’t necessarily know the exact reason or process for using the technology or what taking insulin actually does for me.

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

      I would say that about 20 percent of my family understand the difference of type 1 and 2 and what my devices do, the same for the effects of insulin. There are a few healthcare workers and others who have type 2.

      5 years ago Log in to Reply
    13. Amy Jo

      I once had an uncle tell me that if I eat enough beans, it will cure my T1. I told him I’ll keep taking insulin in the meantime.

      5 years ago Log in to Reply
    14. Wanacure

      I have many relatives, but don’t know them. Outside my brother and a surviving cousin, I’ve no idea what my distant relatives think or know about anything. I know I have distant relatives on the eastern US, southern US, Canada, and west coast and probably Ireland, Scotland, and England. That’s why I checked “other.”

      5 years ago Log in to Reply
    15. keith johnson

      I have two paternal cousins with type 1, a paternal aunt, an aunt by marriage with type 1. A dad who and brother who are type 2 diabetics you control it with meds and insulin. We have a ” diabetes cluster.” Family yearly holiday celebrations and yearly family reunions are like diabetes conventions. We share information. There is not a person over 10 who does not know something about diabetes.

      5 years ago Log in to Reply

    How much do you think your relatives outside of your immediate family know about T1D? Select all of the statements that you think are true for you. Cancel reply

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