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    • 12 hours, 42 minutes 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.
    • 12 hours, 45 minutes 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.
    • 12 hours, 45 minutes 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.
    • 12 hours, 46 minutes 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
    • 12 hours, 54 minutes 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 ´ )⎠⎞
    • 14 hours, 47 minutes 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.
    • 14 hours, 47 minutes 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.
    • 14 hours, 50 minutes 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 ´ )⎠⎞
    • 18 hours, 50 minutes 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
    • 20 hours, 52 minutes 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".
    • 21 hours, 34 minutes ago
      Anita Stokar likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Ironically, I was a 10 year old "before" my diagnosis. BUT, one day I was over my friend's house (on what they call a playdate in today's parlance) and we went to the pharmacy to by candy. I remember vividly a video playing on a loop on a little TV on the counter describing what diabetes was and insulin injections every day. I remember thinking to myself that those poor people must feel like pin cushions. Fast forward to two days after my 11th birthday and my doctor telling me that I had diabetes. I remember my mother being fully unaware of what it entailed. I remember telling her that it's ok, all I need to do is take shots every day. She looked at me puzzled, like how do you know this? The doctor was also a little perplexed but added, it's a little more than that, but correct. Then he explained it based on his two-three hours of training in medical school. It's funny how prompts trigger strange memories.
    • 21 hours, 38 minutes 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 ´ )⎠⎞
    • 22 hours, 1 minute 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.
    • 22 hours, 2 minutes 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".
    • 22 hours, 2 minutes 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.
    • 22 hours, 3 minutes 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.
    • 22 hours, 4 minutes ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I only knew a little . That is why I give grace to others who do not know anything or have misconceptions.
    • 22 hours, 7 minutes ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Ironically, I was a 10 year old "before" my diagnosis. BUT, one day I was over my friend's house (on what they call a playdate in today's parlance) and we went to the pharmacy to by candy. I remember vividly a video playing on a loop on a little TV on the counter describing what diabetes was and insulin injections every day. I remember thinking to myself that those poor people must feel like pin cushions. Fast forward to two days after my 11th birthday and my doctor telling me that I had diabetes. I remember my mother being fully unaware of what it entailed. I remember telling her that it's ok, all I need to do is take shots every day. She looked at me puzzled, like how do you know this? The doctor was also a little perplexed but added, it's a little more than that, but correct. Then he explained it based on his two-three hours of training in medical school. It's funny how prompts trigger strange memories.
    • 22 hours, 8 minutes ago
      Lawrence S. 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 ´ )⎠⎞
    • 22 hours, 10 minutes ago
      KCR likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Ironically, I was a 10 year old "before" my diagnosis. BUT, one day I was over my friend's house (on what they call a playdate in today's parlance) and we went to the pharmacy to by candy. I remember vividly a video playing on a loop on a little TV on the counter describing what diabetes was and insulin injections every day. I remember thinking to myself that those poor people must feel like pin cushions. Fast forward to two days after my 11th birthday and my doctor telling me that I had diabetes. I remember my mother being fully unaware of what it entailed. I remember telling her that it's ok, all I need to do is take shots every day. She looked at me puzzled, like how do you know this? The doctor was also a little perplexed but added, it's a little more than that, but correct. Then he explained it based on his two-three hours of training in medical school. It's funny how prompts trigger strange memories.
    • 22 hours, 11 minutes ago
      KCR 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.
    • 22 hours, 24 minutes ago
      Gary R. 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 ´ )⎠⎞
    • 22 hours, 37 minutes ago
      ConnieT1D62 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 ´ )⎠⎞
    • 22 hours, 53 minutes ago
      eherban1 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, 10 hours ago
      NANCY NECIA 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.
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    Do you currently feel like the financial costs associated with T1D require you to make sacrifices in other areas of your life?

    Home > LC Polls > Do you currently feel like the financial costs associated with T1D require you to make sacrifices in other areas of your life?
    Previous

    If you use a CGM, do you ever experience “compression lows”? These are inaccurate CGM readings that occur when there is pressure placed on the CGM transmitter and sensor. They typically look like a sudden and drastic drop on a CGM graph, and often occur when a person is lying on their sensor.

    Next

    For insulin pump users: Is your current pump still under warranty?

    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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    39 Comments

    1. Angela Naccari

      I answered yes which is incorrect. I thought I was answering a different question. Need to fix the percentages.

      2 years ago Log in to Reply
    2. Raj Gowin

      Since I have coverage as in Medical Insurance I no longer feel that way

      1
      2 years ago Log in to Reply
    3. Robert Wilson

      All the money I spend could have been invested or saved for something that would bring a long term value to myself or my family. In over 25 years I have spent, including my cost of insurance over $195,000. That’s what I have paid to stay alive for another 24 hours since I was diagnosed in 1997. If I could have put that in a retirement account instead…. even with the current downturn I would be in a way better retirement position since I am 9 years away from retirement today.

      3
      2 years ago Log in to Reply
    4. Lisa Sierra

      I’m currently disabled so I get full coverage for the first time in my life. In my 20’s and 30’s blood glucometer strips were super expensive. I couldn’t afford both strips and insulin so I’d only purchase insulin.

      1
      2 years ago Log in to Reply
    5. Nevin Bowman

      Absolutely, yes.

      2 years ago Log in to Reply
    6. Eve Rabbiner

      I am so sad to see how many people answered yes. I’m grateful that my Medicare Advantage plan covers most of my expenses.

      3
      2 years ago Log in to Reply
    7. Mick Martin

      There are no financial costs associated with T1 Diabetes for myself as I live in the UK (United Kingdom of Great Britain and Northern Ireland) where all of financial costs are covered by our NHS (National Health Service), which is financed via direct taxation of all working people.

      That does NOT mean that we don’t have to make sacrifices in other areas of our lives. Having been retired on grounds of ill-health in 1990 and therefore requiring support from Government handouts, there are times when I’ve been admitted to hospital where it’s been found that I’ve been suffering with malnutrition. This is because we often have periods when we can’t even afford basic food necessities. (The only way that I’m able to use the internet is because one of our neighbours [neighbors] graciously allows me to ‘piggyback’ his internet connection.)

      I can’t remember how long it’s been since we last went out for a meal; visit a pub; visit a museum or art gallery, etc. but it’s been well over 25 years now.

      3
      2 years ago Log in to Reply
    8. Lisa Moir

      My insurance cover most of the costs, but the high cost of insurance premiums affect how I spend in other areas of my life.

      2
      2 years ago Log in to Reply
    9. Kathy Hanavan

      I am blessed that my answer is no due to insurance and a good job before retirement that keep me comfortable financially.

      2 years ago Log in to Reply
    10. TomH

      I don’t see how anyone with T1 can seriously answer “No” to this. My perception is just having to take insulin routinely, having to deal with injections, CGMs, pumps, insulin, and appointments, and meds forces “sacrifices” of some sort. That said, it’s how T1s “deal” or “handle” those impacts thats of consequence.

      5
      2 years ago Log in to Reply
      1. Katrina Mundinger

        The question is specifically about the financial sacrifices, not the emotional cost of having T1. I’ve had to stay in jobs (and my husband is currently staying in a job) that are not what I went to school for due to needing some type of coverage, no matter how slim.

        2 years ago Log in to Reply
    11. William Bennett

      Being in the Jardiance donut hole means I gotta pay $800 to cover me from August to the end of the year, and that kicks my bank account pretty hard. Yay for Tier 3 drugs. But it really helps level things out for me so I don’t want to go off it.

      2 years ago Log in to Reply
    12. Jane Cerullo

      Have said before I feel discriminated against by Medicare for choosing MDI over a pump. Have to pay monthly for two insulins, needles, InPen. The InPen lasts for a year and should be Part B as a pump is. May at some point have to go back to a pump for financial reasons

      1
      2 years ago Log in to Reply
      1. Karen DeVeaux

        I feel the same way.

        2 years ago Log in to Reply
    13. cynthia jaworski

      A few years ago when insulin prices first spiked, I was paying a co-pay for covered drugs. My box of pens for just one of my insulins was then listed as well over $1200 for 3 months. These expenses came out of the blue. I had to forgo retirements contributions and planning.

      2 years ago Log in to Reply
    14. Janice B

      In the past with different insurance yes. Now with Medicare and Medicare advantage no. However I have heard insurance rates are going to increase quite a bit next year- ouch. That may make a difference in how I answer.

      2 years ago Log in to Reply
    15. Jen Farley

      Just yesterday, my husband had retired, and my insurance was through his employer. When I called in my prescription for Novalog, I was told the cost was $317.00. My jaw dropped. I was paying $17 per bottle. My costs have increased, and it seems all of them have and it is not cool I am being punished for having diabetes. Thank you, insurance company.

      1
      2 years ago Log in to Reply
      1. Pauline M Reynolds

        You should not pay more than $35 a month no matter what insurance you have. New law.

        1
        2 years ago Log in to Reply
    16. Pauline M Reynolds

      No….not because I don’t have lots of medical expenses, but because I life rent free.

      2 years ago Log in to Reply
      1. Pauline M Reynolds

        *live

        2 years ago Log in to Reply
    17. KIMBERELY SMITH

      Inconvenient bladder products

      2 years ago Log in to Reply
    18. Jeremy Hanson

      I am self employed which means I pay through the nose for insurance premiums. Luckily, I can afford to pay for a good plan that covers most of my meds and supplies but I would certainly have a lower premium plan if I did not have T1D.

      2 years ago Log in to Reply
    19. Steven Gill

      I’m single, working a true “lower-middle income” job meant cash consideration was always part of life. Along with plenty of overtime hours, I did yard work and other odd jobs for luxuries (to include the dogs I’ve rescued) like cable and yeah the insulin and other supplies. But my medical costs were always a consideration. Sacrifice? My vacations were to drive to visit family, in a vehicle I did all the maintenance. But my neighbors did similar to be sure their children had school items. Don’t know if my Saturday nights grilling hotdogs at a neighbor’s because steaks weren’t on sale is a sacrifice, but having diabetes for me is always a concern. I don’t know if I’d have a greater quality of life if not TYPE 1, more money.

      (Admitted last week I really feel lucky because I feel better at 63 than many much younger, that stress towards health might have offered a huge benefits. Even with a sore back and knees I really feel lucky, financially? Unsure)

      1
      2 years ago Log in to Reply
    20. Becky Lamont

      The cost of insulin and supplies is a major cost each month.

      1
      2 years ago Log in to Reply
    21. Sue Martin

      It used to be when I wasn’t employed. I’m now in a stable job and don’t worry about the costs so much.

      1
      2 years ago Log in to Reply
    22. Kristine Warmecke

      I answered yes; HOWEVER for many years it didn’t. Wasn’t until the drug companies, middle man, etc. wanted more money that it’s caused me to make sacrifices (food, electric, water, health and car insurance, rent, car payment) which one can I skip this month so I can pay for my Novolog since my Medicare Advantage plan STILL refuses to cover it even though I can’t use Humalog because I’m allergic to it. sigh

      1
      2 years ago Log in to Reply
      1. Kristine Warmecke

        I should also mention that my plan covers my pump & Dexcom supplies at 100%, thank goodness.

        2 years ago Log in to Reply
      2. Philip Bunsick

        I used Novolin R for a while to compare lower cost insulins to Humalog and it worked very well for me. Of course an older insulin and not as fast acting but my TIR was the same – but did have a few more lows – but for $30 per vial at Walmart and no prescription needed it worked well.

        2 years ago Log in to Reply
      3. Kristine Warmecke

        @Philip Bunsick I use Novolin R when I had to take a heavy duty steroid; that way my pump setting doesn’t have to be increased so much I’m changing it out daily.

        2 years ago Log in to Reply
    23. Bea Anderson

      Of course, but I was adult and remember the before and after. So perspective.

      2 years ago Log in to Reply
    24. T1D4LongTime

      I have good corporate insurance, however I still reach my out of pocket around September or October each year. I’m approaching Medicare now, so that may make expenses better with the sensors and insulin covered.

      1
      2 years ago Log in to Reply
    25. Janis Senungetuk

      YES definitely! For the past 68+ years the financial burden of increasing medical expenses has been a determining factor.

      2 years ago Log in to Reply
    26. Tb-well

      My sacrifices are more like staying in a job because of health insurance than deciding to use different things due to cost.

      1
      2 years ago Log in to Reply
    27. Jen Farley

      @Pauline M Reynolds
      I think their loop around is having me switch from one insulin to another and the one they have me switching to through another company is $35.00 per bottle. Still higher than $17.00 per bottle

      2 years ago Log in to Reply
    28. Jeff Balbirnie

      Money forced to buy mandatory D supplies, medications cannot be used elsewhere. 1,000% absolutely the costs require obscene tragic sacrifices.

      2
      2 years ago Log in to Reply
    29. Melinda Lipe

      I am used to dealing with insurance coverage as well as co-pays. It’s been a part of my life for 57 years. God has blessed, and helped me to afford what is needed.

      2 years ago Log in to Reply
    30. Dale Norman

      I answered no but I currently have employer provided insurance. As I approach retirement I am very concerned about keeping the same level of care at a reasonable cost.

      2 years ago Log in to Reply
    31. Katrina Mundinger

      I’ve not been able to do many things I’d like to do: purchase 2 more clarinets (ranging from 3,000 to 5,000 USD), travel to learn more music, and both of those things prevent me from getting more performances and income. 🙁

      2 years ago Log in to Reply
    32. jurgen vercauteren

      no, In Belgium we have fortunately a great health insurance system! All employees pay tax for that and we are not even in the Soviet Union 🙂 All medical costs are partial or fully re-imbursed.

      2 years ago Log in to Reply

    Do you currently feel like the financial costs associated with T1D require you to make sacrifices in other areas of your life? Cancel reply

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