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  • Activity
    • 3 hours, 7 minutes ago
      Greg Felton likes your comment at
      If you were to request the next available appointment with your T1D healthcare provider, when do you estimate the next available appointment would be?
      Before the onslaught of Type 2 Diabetes, I, as a T1D, could get an appointment almost anytime I needed one. Now, I cannot get an appointment within 3 months, which is the time within I must see rhe doctor for Medicare benefits. My doctor cancelled 2 (half ) of my sppointments last year. Caused ma a lot of problems. I live in Florida, a place where modern medicine does not seem to have reached yet.
    • 3 hours, 7 minutes ago
      Greg Felton likes your comment at
      If you were to request the next available appointment with your T1D healthcare provider, when do you estimate the next available appointment would be?
      I routinely see my Endo every three months. At the end of my appointment I schedule the next quarterly meeting date. But if I ever have to reschedule it, then it takes anywhere from two to four weeks to find a time that works for us.
    • 5 hours, 3 minutes ago
      Mike S likes your comment at
      If you were to request the next available appointment with your T1D healthcare provider, when do you estimate the next available appointment would be?
      It all depends on the urgency of my needs. I’ve gotten in the next day before, but those days may be gone! It also depends on who I see. But these days, even the PA is often booked. Of course, cancellations happen, so that can be a factor as well.
    • 5 hours, 19 minutes ago
      Jeff Marvel likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      The beginning of the year is always a bit iffy when you're on Medicare. Even though I've already paid my annual deductible, my pharmacy can't see that, so I must wait until it shows up on my Medicare account before I order new insulin. I always try to have plenty of insulin on hand at the end of December so it's not an issue. The organization I get my pump equipment from has a lot they must do because of Medicare, as well, and that can get time consuming. All-in-all, I'm lucky to have the time, energy and patience to deal with it, and I know up front these time-consuming moments are to be expected. If I wasn't retired, it'd be more of an issue.
    • 16 hours, 30 minutes ago
      Gerald Oefelein likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I selected 6 hours. So far, I have spent 6 weeks trying to get a new pump. I decided to look for a new pump in mid-December as my 770G warranty expired on January 3. I wanted to go hoseless with the Omnipod and the Dexcom 6. I contacted Dexcom and they sent me to the medical distribution company ASPN, and they could do the Omnipod but only with pharmacy part D with the Dexcom 6 sensor on DME My part D pharmacy plan had Omnipod as tier 6. $155.56 co pay and $150/month. The omnypod is not available as DME. I called INSULET the mfgr of omnipod. They told me they only supply via pharmacy plan to get more T2d's to sign up. Verses 100% DME coverage, part D coverage that was a non-starter. I contacted another supply company CCSmed. They could do both Dexcom 6 and tslim x2. Ineeded a Endo visit to get the notes and Rx. I had my Endo visit on Jan 20. Still waiting for CVSmed. Been waiting for 5 weeks now. Just called CCSmed and they got the endo notes and Rx but Medicare wanted to know who paid for my 770G 4 years ago. Fortunately, that was private/company. My new pump should now ship tomorrow. Finally.
    • 20 hours, 18 minutes ago
      Wanacure likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      Most of the 3-4 hours is way ting on a phone
    • 20 hours, 21 minutes ago
      Wanacure likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I answered "No time," but I live in France, where we have a single provider. I receive a prescription from my doctor and go to the pharmacy monthly to have it filled. (Pump peripherals are provided by a separate supplier.) "Appeals" do not exist here since the doctor will only prescribe medicines that are reimbursed. And no, I have never needed a treatment that wasn't covered.
    • 21 hours, 3 minutes ago
      Wanacure likes your comment at
      When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.
      The resources I use in managing my glucose levels once sick is my own personal experience after living with t1d for 46 years
    • 21 hours, 3 minutes ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      Switching to Medicare has created (seemingly) endless hours and day making this transition with all things diabetes related. We’re still in the midst of making this ā€˜delightful’ change. This week we learned that Medicare covers Either CGM stuff OR glucose test strips. Thank goodness that God is sovereign over all these details. He helps me walk through these challenges without despair.
    • 21 hours, 5 minutes ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      The last 3 months have been filled with frustrating phone calls now that I switched back to traditional Medicare from a Medicare Advantage plan. I have been fighting to get strips authorized in addition to CGM- they did not authorize them because I had no proof that I had a meter!! Crazy making! I had to write an appeal letter in order to get them, but finally got it worked out. I also had some pump replacement issues, trouble getting insulin, etc.
    • 21 hours, 10 minutes ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I answered "No time," but I live in France, where we have a single provider. I receive a prescription from my doctor and go to the pharmacy monthly to have it filled. (Pump peripherals are provided by a separate supplier.) "Appeals" do not exist here since the doctor will only prescribe medicines that are reimbursed. And no, I have never needed a treatment that wasn't covered.
    • 21 hours, 11 minutes ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      Much too much time! Part of it, I know, is my own fault, for not keeping anxiety at bay when I have to sort out which plan will work best, annually. But it is something I dread, every single year. When I call to get some help understanding, the people are almost always very nice, but I have had times when the information was incorrect or not explained clearly. I usually commiserate with the person on the phone for having such an annoying system, and agreement seems to rule the day. But I never chose to make sorting out insurance management a career!
    • 21 hours, 13 minutes ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I selected 6 hours. So far, I have spent 6 weeks trying to get a new pump. I decided to look for a new pump in mid-December as my 770G warranty expired on January 3. I wanted to go hoseless with the Omnipod and the Dexcom 6. I contacted Dexcom and they sent me to the medical distribution company ASPN, and they could do the Omnipod but only with pharmacy part D with the Dexcom 6 sensor on DME My part D pharmacy plan had Omnipod as tier 6. $155.56 co pay and $150/month. The omnypod is not available as DME. I called INSULET the mfgr of omnipod. They told me they only supply via pharmacy plan to get more T2d's to sign up. Verses 100% DME coverage, part D coverage that was a non-starter. I contacted another supply company CCSmed. They could do both Dexcom 6 and tslim x2. Ineeded a Endo visit to get the notes and Rx. I had my Endo visit on Jan 20. Still waiting for CVSmed. Been waiting for 5 weeks now. Just called CCSmed and they got the endo notes and Rx but Medicare wanted to know who paid for my 770G 4 years ago. Fortunately, that was private/company. My new pump should now ship tomorrow. Finally.
    • 21 hours, 13 minutes ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      The beginning of the year is always a bit iffy when you're on Medicare. Even though I've already paid my annual deductible, my pharmacy can't see that, so I must wait until it shows up on my Medicare account before I order new insulin. I always try to have plenty of insulin on hand at the end of December so it's not an issue. The organization I get my pump equipment from has a lot they must do because of Medicare, as well, and that can get time consuming. All-in-all, I'm lucky to have the time, energy and patience to deal with it, and I know up front these time-consuming moments are to be expected. If I wasn't retired, it'd be more of an issue.
    • 21 hours, 13 minutes ago
      August Rossano likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I said 8+ and the reason, as for so many others, can be summed up in a phrase: transitioning to Medicare.
    • 21 hours, 49 minutes ago
      Wanacure likes your comment at
      On a scale of 1-5, how satisfied are you with your current insulin delivery method (pump, pens, syringes, inhaler, etc.)? 5 = the most satisfied, 1 = the least satisfied
      I’m a reasonably satisfied MDI user with Lantus and Fiasp. I’ve looked into getting a pump but honestly, until I find one that does everything I want, I’ll probably hold off. My wish list for a pump: 1) no tubes 2) works well with Fiasp 3) controls that allow me to stay at my target of 70-90 mg/dl all night long.
    • 22 hours ago
      Wanacure likes your comment at
      On a scale of 1-5, how satisfied are you with your current insulin delivery method (pump, pens, syringes, inhaler, etc.)? 5 = the most satisfied, 1 = the least satisfied
      MDI for the past 60 years and do not see any alternative that I would prefer. The needles for my pens are so thin and sharp that they are painless (a far cry from the lancets I once used). chiefly, I am glad not to have to deal with setting up a pump and. Although I love my libre, I am not good candidate for having devices affixed to me. If my insulin delivery got interrupted they way i have interrupted my cgm service, I would have been in trouble. Furthermore, I have a track record of having both mechanicall and electronic things malfunction. (Seriously, I sometimes act as a beta-tester for technology folks. Maybe I push to many buttons?)
    • 22 hours, 12 minutes ago
      Wanacure likes your comment at
      On a scale of 1-5, how satisfied are you with your current insulin delivery method (pump, pens, syringes, inhaler, etc.)? 5 = the most satisfied, 1 = the least satisfied
      I've had Tandem x2 and Dexcom since September. Previously on Medtronic for around 15 years. Grew to HATE the sensors and switched before the warranty on my last Medtronic was up. So far, I absolutely LOVE the Tandem and the Dexcom. I'm disappointed, however, in the amount of waste and plastic that this pair creates. Of course there will always be plastic waste from any pumps/sensors, but the amount of non-reusable stuff for insertions is ghastly.
    • 22 hours, 13 minutes ago
      Wanacure likes your comment at
      On a scale of 1-5, how satisfied are you with your current insulin delivery method (pump, pens, syringes, inhaler, etc.)? 5 = the most satisfied, 1 = the least satisfied
      Have your doctor prescribe the syringes with .5 unit increments instead of the 1 unit syringes. Not quite a .1 unit which you are hoping for, but .5 is better than 1 unit increments.
    • 23 hours, 29 minutes ago
      Ahh Life likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I answered "No time," but I live in France, where we have a single provider. I receive a prescription from my doctor and go to the pharmacy monthly to have it filled. (Pump peripherals are provided by a separate supplier.) "Appeals" do not exist here since the doctor will only prescribe medicines that are reimbursed. And no, I have never needed a treatment that wasn't covered.
    • 1 day, 1 hour ago
      ConnieT1D62 likes your comment at
      In your own words, how would you describe the feeling of a severe low?
      Nothing short of terrifying. I often go into seizures, having no idea where I am, who anybody, or even if I’m alive or dead. I’ll feel like I’m falling or hurtling toward something. At home I feel like my house is tilting. Im leaving a lot out but these are some of the scariest things.
    • 1 day, 1 hour ago
      Modee likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      Most of Europe has the right idea! Is it a good health system for you overall? The US may be too large to implement a national system, but that doesn't hold states back (as long as there is federal money to help).
    • 1 day, 1 hour ago
      Modee likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I answered "No time," but I live in France, where we have a single provider. I receive a prescription from my doctor and go to the pharmacy monthly to have it filled. (Pump peripherals are provided by a separate supplier.) "Appeals" do not exist here since the doctor will only prescribe medicines that are reimbursed. And no, I have never needed a treatment that wasn't covered.
    • 1 day, 1 hour ago
      Modee likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      I said 8+ and the reason, as for so many others, can be summed up in a phrase: transitioning to Medicare.
    • 1 day, 1 hour ago
      Modee likes your comment at
      Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
      PUMP USERS: Just in case nobody has told you, if you use a pump, Insulin is considered durable medical equipment, which can save a lot of money, even with the new price cap
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    In honor of National Siblings Day, if you have T1D, did you also have a sibling growing up who had T1D? Tell us about what that was like in the comments!

    Home > LC Polls > In honor of National Siblings Day, if you have T1D, did you also have a sibling growing up who had T1D? Tell us about what that was like in the comments!
    Previous

    If you have T1D, have any of your siblings been screened for T1D antibodies?

    Next

    If you have transitioned to Medicare from private insurance, did you at first have to go any amount of time without a pump or CGM because you did not meet all of Medicare’s coverage requirements?

    Sarah Howard

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    22 Comments

    1. Ahh Life

      No siblings, no aunts, no uncles, no cousins, no parents, no offspring have ever had T1D. And those people number 4 or 5 dozen. I am the sole lucky winner. Sigh! šŸ’Ŗ( Ķ”ā›ā€Æā€æ Ķ”ā›Ņ‚)

      2
      2 years ago Log in to Reply
    2. Bill Williams

      My grandmother had T1D but none of her children, grandchildren or great grandchildren have had it except yours truly. My siblings were, however, the beneficiaries of a diet ruled by ā€œExchangesā€.

      2 years ago Log in to Reply
    3. Verna Holcomb

      I was the only sibling really “growing up”, but my youngest sister was diagnosed in her teens, when I was away at college. That was a long night! My whole family (we’re 2 of 4 kids) was pretty on top of the whole insulin thing, partly because our father was also on insulin as a T2D. I was very lucky to not be alone as a kid – even if I was the only kid in my town with T1D!

      2 years ago Log in to Reply
    4. Bob Durstenfeld

      I had two out of three younger siblings with T1D, my dad also had it. It was the “normal” in our hour. Every one on the diabetes diet. In my house, my eldest of three sons has T1D and his daughter has it as well.

      2 years ago Log in to Reply
    5. Michelle Saunders

      My younger sister has type 1 also. We didn’t know the other existed until 9 years ago.I was 7 and she was 9 at diagnosis. She is 12 years younger than I am. We both share the same sad.

      2 years ago Log in to Reply
    6. connie ker

      I became a T1D at the age of 49 going through menopause (LADA). My brother was diagnosed with type 2 in the same year and is presently on insulin too. So we made it into later years, but we’re on the same insulins with MDI. I wear the Freestyle Libre which is so helpful for me living alone. He does not wear a CGM.

      2 years ago Log in to Reply
    7. Daniel Bestvater

      Three siblings. Each one of us has a different auto immune disease; type 1, rheumatoid arthritis, Crohn’s and celiac disease.

      2 years ago Log in to Reply
    8. Donna Brownley

      I am (was) an identical twin. When my sister and I were 11yrs old, she developed T1D. I was told that because we were identical, I would develop it too. I became T1D when I was 16 yrs old (Nov. 1977). We took different paths in caring for ourselves. She didn’t follow health recommendations and I did. She passed away from complications in 2003, just before our 42nd birthday. To this day, I do not have any complications.

      2 years ago Log in to Reply
    9. Jana Foley

      I am the only one of four children in my family to have T1D, but I have two of four children with it. My youngest two both have it and on their dad’s side of the family it is quite prevalent with one of his sisters, and several of his nieces and nephews also having it. .

      2 years ago Log in to Reply
    10. HMW

      My sister has the auto-antibodies but did not get type 1 diabetes.

      2 years ago Log in to Reply
    11. Amanda Barras

      N/A No sibling.

      2 years ago Log in to Reply
    12. Janis Senungetuk

      N/A , no siblings.

      2 years ago Log in to Reply
    13. George Lovelace

      4 Brothers, all of whom have had some signs but never developed T1. One brother did have a T1 daughter.

      2 years ago Log in to Reply
    14. Christina Trudo

      Other- I have a sibling with T1, he is 6 years younger than I, so when he was diagnosed at 18 it was no longer our “growing up” years. (I had been diagnosed 13 years earlier).

      2 years ago Log in to Reply
    15. Carol Meares

      I was dxd at 39 and my younger sister was dxd around 3 years ago at age 60 I think. I am now 67. We didn’t grow up together with it but are now both on TSlim and Dex. We talk about management quite a bit but live in different States so haven’t seen each other lately because of CoVid.

      2 years ago Log in to Reply
    16. LizB

      I was diagnosed Type 1 at age 19 with zero history of diabetes on either side of my family. I remember the doctor in the hospital being surprised there was no family history and saying, “Well, sometimes it just happens”. 25 years later my sister was diagnosed with Type 1 in her late 40s. So we definitely did not grow up with it together.

      2 years ago Log in to Reply
    17. Ita Shapiro

      Both I and my beloved brother were diagnosed with t1d later in life
      Sadly, he passed away from DKA 20 months ago.

      2 years ago Log in to Reply
    18. Kristine Warmecke

      Yes, my younger brother was diagnosed 10 years before I was. He never wanted anyone to know he had it & is still like that, I on the other hand could careless who know’s I am. It was nice to have someone to share the frustrations with, we still do, and “I guess what I did” who understands.

      2 years ago Log in to Reply
    19. Henry Renn

      I was diagnosed at age 4 yrs, 7 mos. I knew T1 was a pain in the backside but I never realized that it was a terrible disease until one day, at 5:30 AM, eating breakfast with my Dad before school. I was 15+ years old & had T1 for 10 years. He told me that my youngest sister was diabetic & that my mother had been crying all night long. Dawned on me then that diabetes must be a really, really bad thing to have. I did not yet use the word, disease.

      2 years ago Log in to Reply
    20. Sue Herflicker

      Thats a hard one to answer because my brother was diagnosed at 4 years old and i wasn’t diagnosed until I was 57 so, yes I had a brother with diabetes growing up, but I myself wasn’t until 4 years ago. I did however raise 2 T1D boys, both diagnosed very young.

      2 years ago Log in to Reply
    21. Mark Fuller

      My brother was diagnosed at age 32 and I was diagnosed at age 42. Although we didn’t grow up with T1D ourselves, our grandfather and great grandmother on our mother’s side of the family both had T1D. Believe me it was difficult to witness what they had to go through to manage their diabetes back in the 1950’s and 1960’s.

      2 years ago Log in to Reply
    22. Kaylea Bowers

      I’m the oldest of four and was the first person in my family (any generation) to be diagnosed with T1D — just before my 11th birthday and I was probably a day or two from death (DKA + cerebral edema). One of my little sisters was diagnosed almost 8 years later, also around age 11 but didn’t get nearly as sick because we knew what the signs were. My baby brother was diagnosed 9 years after that at age 16 and was totally fine at diagnosis other than drinking/peeing a lot — that was the only warning sign my mom needed to take him in, and we were able to check his blood sugar before going to the hospital and it was in the upper 200s I think. My 29-year-old sister seems to be in the clear, and I pray she stays that way!

      I hate that 3 of us have T1D, but I’m so glad I was the first one to get it so I could be a resource for my younger siblings. And it’s a blessing that we all can understand what each other is going through.

      2 years ago Log in to Reply

    In honor of National Siblings Day, if you have T1D, did you also have a sibling growing up who had T1D? Tell us about what that was like in the comments! Cancel reply

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