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    • 7 hours, 34 minutes ago
      Amy Schneider likes your comment at
      Do you store your unopened insulin in the refrigerator?
      I keep my opened insulin in the refrigerator too. When traveling I use a FRIO evaporative pouch.
    • 9 hours, 1 minute ago
      Kathy Hanavan likes your comment at
      Between your regular T1D care visits, what questions tend to come up that you wish you could ask a diabetes expert? Share your thoughts in the comments.
      I want a thumbs down icon!
    • 9 hours, 1 minute ago
      Kathy Hanavan likes your comment at
      Between your regular T1D care visits, what questions tend to come up that you wish you could ask a diabetes expert? Share your thoughts in the comments.
      I seldom have any questions other than RX refill request which I submit through the patient portal. If I do have treatment questions, I typically do my own research, and if not satisfied with what I find out, I submit a question in the portal.
    • 9 hours, 1 minute ago
      Kathy Hanavan likes your comment at
      Between your regular T1D care visits, what questions tend to come up that you wish you could ask a diabetes expert? Share your thoughts in the comments.
      When I come up with a question between visits, I usually just do some research.
    • 11 hours, 14 minutes ago
      ConnieT1D62 likes your comment at
      Do you store your unopened insulin in the refrigerator?
      I keep my opened insulin in the refrigerator too. When traveling I use a FRIO evaporative pouch.
    • 11 hours, 14 minutes ago
      ConnieT1D62 likes your comment at
      Do you store your unopened insulin in the refrigerator?
      Sorry. Of course I store unopened in frig. Opened in my room as I use it up in 30 days
    • 11 hours, 15 minutes ago
      ConnieT1D62 likes your comment at
      Do you store your unopened insulin in the refrigerator?
      No, I keep it in the oven! ;) Same answer as the last time they asked this ridiculous question!
    • 11 hours, 57 minutes ago
      Becky Hertz likes your comment at
      Do you store your unopened insulin in the refrigerator?
      Unopened yes, and now even opened just in case. I am getting a new health [lan (thank goodness a much better one - with better doctors and hospitals in network!) so it's worth it. But I can't get any appt - even for a PCP until September. I've been occasionally buying out of pocket insulin, pump and CGM supplies (in my mind, hoarding is a character asset for T1D people). I need to have my enough stuff to see me through, Of course, I am hoping there''s an appt cancellation.
    • 13 hours, 20 minutes ago
      Bruce Schnitzler likes your comment at
      Do you store your unopened insulin in the refrigerator?
      Unopened yes, and now even opened just in case. I am getting a new health [lan (thank goodness a much better one - with better doctors and hospitals in network!) so it's worth it. But I can't get any appt - even for a PCP until September. I've been occasionally buying out of pocket insulin, pump and CGM supplies (in my mind, hoarding is a character asset for T1D people). I need to have my enough stuff to see me through, Of course, I am hoping there''s an appt cancellation.
    • 15 hours, 17 minutes ago
      alex likes your comment at
      Here’s What You Need to Know About the Dexcom G7
      This article explains the Dexcom G7 features in a clear and easy way, especially for people new to continuous glucose monitoring. Very informative and helpful. Sportzfy TV Download
    • 1 day, 6 hours ago
      KarenM6 likes your comment at
      Have you ever been told you couldn’t physically do something because you live with diabetes?
      Long time ago - told there were certain occupations I would not be allowed to do because if T1D. Pilot, air traffic controller, military, etc.
    • 1 day, 6 hours ago
      KarenM6 likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      I have been told many times "YOU CAN'T EAT THAT!" ONLY to frustrate them and eat it anyway and then bolus accordingly.
    • 1 day, 6 hours ago
      KarenM6 likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      I think it is a common experience for most people with T1D. People do not understand anything about it. I do not take it personally. I try to educate when appropriate.
    • 1 day, 6 hours ago
      KarenM6 likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      Lol hell when haven't they. Lol
    • 1 day, 6 hours ago
      KarenM6 likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 1 day, 8 hours ago
      lis be likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I was only 2 when Diagnosed 70 years ago. My small town doctor admitted he didn't know much about T1D, and fortune for my parents and I he called what is now Joslin Clinic, and they told him how much insulin to give me. He taught my parents, who then traveled over 350 miles to Boston, to learn about how to manage T1D. My doctor learned more about T1D, and was able to help 2 other young men, that were later DX with T1D in our small town. I went to Joslin until I turned 18 and returned to become a Joslin Medalist and participated in the research study, 20 years ago. Still go there for some care.
    • 1 day, 8 hours ago
      lis be likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I was 7 when things changed in my home. My older brother was hospitalized for 2 weeks. When he came home, we no longer ate the way we had before. This was 1956. Dessert alternated between sugarless pudding or sugarless Jello. I learned that bread and potatoes had carbohydrates and that turned to sugar. There was a jar in the bathroom. It seemed my brother was testing his urine every time he went in there. There was a burner and pot on the stove designated for boiling syringes. I watched my brother give himself shots and I remember how hard it was to find someone to manage his care if my parents had to travel. Diabetic Forecast magazine came in the mail each month and there were meetings of the local diabetes association that my mother attended religiously. My brother got a kidney and pancreas transplant at age 60 and before he died lived for 5 years as a non-diabetic. A few years later I was diagnosed. Sorry he was not able to make use of today’s technology. I often wonder what he and my late parents would think about me, at age 66, being the only one in the family with type 1.
    • 1 day, 8 hours ago
      lis be likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 1 day, 12 hours ago
      kilupx likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      My brother was type 1 since an early age. I was only diagnosed in my late 40s
    • 1 day, 14 hours ago
      Phyllis Biederman likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Absolutely nothing. Diagnosed in late December 1962 at at the age of 8 years and was told I was going for a stay in hospital because I have "sugar diabetes".
    • 1 day, 15 hours ago
      Bill Williams likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 1 day, 15 hours ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I was diagnosed in 1976 at the age of 18 while in college. One weekend, I was drinking a lot of water and peeing frequently. I remembered having read a Reader's Digest article on diabetes, and I told my friends I thought I might have it. Two days later, the diagnosis was confirmed.
    • 1 day, 16 hours ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Absolutely nothing. Diagnosed in late December 1962 at at the age of 8 years and was told I was going for a stay in hospital because I have "sugar diabetes".
    • 1 day, 16 hours ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I knew I couldn’t or shouldn’t have my two fav things in the world: Pepsi cola and chocolate. I was 42, and suspected very strongly that I had it, and ate a large piece of chocolate cake before my doctor’s appointment (sounds more like I was 12). Fast forward 25 years later: I never had a real cola again, but do occasionally have chocolate. I’m way healthier than I was back then in terms of diet. I no longer have irritable bowel, and I’m lucky to be able to afford what I need to combat the ill effects of this chronic disease. I’m blessed, and grateful for insulin.
    • 1 day, 16 hours ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      It was 35 years ago for me. I had no experience with T1d. I was starting to show symptoms and my sister-in-law quickly researched T1d and told me what she found. I went to my GP a week or two later. My BG was over 600. He sent me to the hospital right away. Blood test confirmed it.
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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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