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    • 35 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.
    • 2 hours, 26 minutes 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.
    • 2 hours, 32 minutes 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).
    • 2 hours, 32 minutes 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.
    • 2 hours, 34 minutes 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.
    • 2 hours, 35 minutes 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
    • 2 hours, 43 minutes ago
      Samantha Robinson 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.?
      Just spent an hour and a half on the phone with insurance the other day trying to switch to Dash pods and nothing was accomplished....
    • 2 hours, 49 minutes ago
      beth nelson 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.?
      Normally, no time spent but I changed insulins so I wanted to verify everything with my insurance company before asking my endocrinologist to write a new script.
    • 2 hours, 51 minutes ago
      beth nelson 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.
    • 2 hours, 52 minutes ago
      beth nelson 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.
    • 3 hours, 8 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.?
      I expect that we’ve all had that feeling about how stupid payers can be when it comes to T1D.
    • 3 hours, 8 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.?
      Seriously depends on when you ask. The past 3 months have only been an hour or two, but if you'd asked this same question last September it would've been over 8 as I dealt with the annual "Yes I need a Dexcom and Omnipod again" red tape with my insurance/providers/doctor's office. I am counting the time on hold as well, but still - pretty ridiculous that insurance thinks Type 1 is going to magically go away just because it's been a year. I wish!
    • 3 hours, 9 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 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.
    • 3 hours, 9 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.?
      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.
    • 3 hours, 10 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.?
      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!
    • 3 hours, 10 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.?
      I said 8+ and the reason, as for so many others, can be summed up in a phrase: transitioning to Medicare.
    • 3 hours, 10 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.?
      Just spent an hour and a half on the phone with insurance the other day trying to switch to Dash pods and nothing was accomplished....
    • 3 hours, 29 minutes ago
      William Bennett 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.
    • 3 hours, 29 minutes ago
      pru barry 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.?
      Eight times a year I have to spend more than eight hours to fix errors on the part of my mail order pharmacy and DME supplier. My endo doesn't keep track of when prescriptions expire or need refills so add another couple hours a year building a to-do list for the doc. I'm ready to start billing for my time.
    • 3 hours, 31 minutes ago
      pru barry 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.?
      One of the most unnecessary and frustrating parts of being a type 1 diabetic is all the stress and time involved with insurance companies, pharmacies, durable medical equipment distributers and their need to always contact physicians.
    • 4 hours, 1 minute ago
      Bill Williams 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.?
      Significantly less time since I switched from Byram to ADS. It has made a world of difference and saved so many headaches!!
    • 4 hours, 15 minutes ago
      Janis Senungetuk 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.?
      One of the most unnecessary and frustrating parts of being a type 1 diabetic is all the stress and time involved with insurance companies, pharmacies, durable medical equipment distributers and their need to always contact physicians.
    • 4 hours, 24 minutes ago
      Richard Wiener 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 5 to 6 hours, with maybe 20min. of that time ordering G6 sensors and tSlim supplies. The remaining time was finding Novolog I could afford.
    • 4 hours, 26 minutes ago
      Richard Wiener 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.
    • 4 hours, 49 minutes ago
      Katrina Mundinger 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.?
      One of the most unnecessary and frustrating parts of being a type 1 diabetic is all the stress and time involved with insurance companies, pharmacies, durable medical equipment distributers and their need to always contact physicians.
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    If you have experienced complications related to T1D, which of these words most accurately describe the effect of complications on your quality of life?

    Home > LC Polls > If you have experienced complications related to T1D, which of these words most accurately describe the effect of complications on your quality of life?
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    From which healthcare provider do you receive the majority of your diabetes care?

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    If you were to request the next available appointment with your T1D healthcare provider, which of these options best describes when that next available appointment would be?

    Sarah Howard

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    33 Comments

    1. Elle

      52yrs T1 since age 4. Aging with T1 is progressive negative due to vital organs break down. The decades before cgms and synthetic insulin catch up now. My retinas! Glaucoma due to the vitrectomies. Then the dry eye disease due to drops used for glaucoma! Only maintaining what I have. No cure. No reversing damage. But- I lived a long and very athletic life as T1. M T1 motivated me to look for careers that forced me to be physically active. And I got rewarded with new technologies with devices and creation of vitreoctemies! High BGs permanently destroy organs. MDIs permanently scar tissue. Lows permanently destroy brain cells. Living in balance every moment of every day is extremely difficult thus stressful thus can raise BGs- realizing this too late is risking your life. Overwhelmed with fear of how I will grow older- total loss of eyesight? Heart problems? Kidneys? Limbs? Living in a resthome due to 0 independence? Isolated and alone. In fear health insurance will stop covering what is keeping me healthy today or will cover future needs in time to save me

      5
      1 year ago Log in to Reply
      1. Wanacure

        Yeah, Elle, I still worry about the same. BUT seek refuge in Buddhism. Worrying about the future distracts us from living in the PRESENT.

        1 year ago Log in to Reply
    2. Ahh Life

      Being a focus group of one, it’s easy to thrive on the smell of one’s own sulfur and portray life as a sadistic lottery. 😔

      Evolution of the human species has placed it in an eternally awkward position and it has done so with messianic intensity rendering the human body a craven weakling and submitting it to abject degradation. Then pile on retinopathy, neuropathy, and nephropathy. Nice job, mother nature. šŸ˜•

      But I choose not to do that. It may be periwinkle-hued optimism, but you white-knuckle through whatever you have to do only to discover, hey, life ain’t so bad. 70 years of T1D since age 4 can be dealt with and even enjoyed. āœ(◔◔◔)

      7
      1 year ago Log in to Reply
      1. Mig Vascos

        šŸ‘Œ

        1 year ago Log in to Reply
      2. Wanacure

        I always enjoy your comments. Thank you.

        1 year ago Log in to Reply
    3. Kim Murphy

      Painful would be the word I would have used. I have had to have four surgeries due to complications from the diabetes and recovery was long and painful.

      1
      1 year ago Log in to Reply
    4. Mig Vascos

      I’m very fortunate not to have any of the complications after almost 50 years of insulin use.

      1 year ago Log in to Reply
    5. Sahran Holiday

      Tiny bit of retinopathy. Continuing struggle with endocrinologist, ophthalmologist and primary care, they say my A1c goal less than 5.6 are too strident. Nothing about this condition interferes with any part of my life anymore than taking care of my teeth and moisturizing my skin.

      1
      1 year ago Log in to Reply
      1. Nevin Bowman

        5.6 is a great target if you’re not having wild swings in your blood glucose levels.

        1
        1 year ago Log in to Reply
      2. Wanacure

        After over 60 years as T1 I have some neuropathy in feet. Any other problems I have are NOT caused by diabetes but who knows? Things like depression mainly caused by lower testosterone levels (which maybe I could increase by going to Longevity Medical Clinic ($5000 per year but cheaper if you avoid all the other supplement pills & cosmetic shit) & maybe dysfunctional family during Cold War. My Impending dementia in my family is maternal genetic. But frequent hypoglycemic episodes probably did not help. Was it neuropathy or Extra Strength Tylenol that caused my loss of balance & some hearing loss? I still can walk briskly but not ride bike. Maybe I could afford an electric trike to handle Seattle hills? Maybe a chopped Harley trike? No doubt genetics have contributed to my long life + aerobics, weight-lifting, yoga, low carb diet.

        1 year ago Log in to Reply
    6. Nevin Bowman

      Life-altering/motivation. I lost over 80% of my vision in one eye around the age of 30 after believing that I was doing ok with my diabetes. I made drastic changes, had corrective surgery, and I now have my sight restored for more than 15 years, and I intend to keep it that way!

      3
      1 year ago Log in to Reply
    7. Amanda Barras

      Bearable: hypothyroidism is bearable due to only a slight inconvenience of taking an additional medication and following up with labs.
      Motivating: insulin resistance has caused me to start eating better for weight loss, better control, and less insulin usage.

      1 year ago Log in to Reply
    8. GLORIA MILLER

      T1 for 64 years, I know I am fortunate to have no complications to date. Pumps and CGMs make life much easier today.

      3
      1 year ago Log in to Reply
    9. Louise Robinson

      When my ophthalomoloist said he noticed the beginnings of diabetic retinopathy in the late 1980’s and I began to feel numbness in my toes around the same time, it was a wake-up call for me to tighten my diabetes control. By doing that I have been able to forestall and delay the progression of both of these conditions. More than 20 years later, by keeping my A1c in the low 6’s, and by beginning to use an insulin pump (2011) and CGM (2019), I have been successful it preventing the progression of these conditions and do not require any medication or treatment for them. I’ve begun to use the extended bolus feature of my pump because I suspect incipient gastroparesis. and the extended bolus helps me to avoid lows. Fear of losing my eyesight is a HUGE motivator, especially given the history of macular degeneration in my family…a double whammy for a person with diabetes. After 45 years as a Type 1, I am grateful for the tools and technology available to us to help us better manage our diabetes. But, with diabetes, there are no guarantees.

      1
      1 year ago Log in to Reply
    10. StPetie

      I was informed I was diabetic when I awakened from a 5 day hyperglycemic coma (bg 1500+). When I was found my temp was 82 and resperations were 6. The resultant organ damage required removal of my gall bladder, 50% of my colon (permanent colostomy) and 2 chunks of small intestine. Pancreatic atrophy, splenic infarction, various strictures and multiple jp drains in my abdomen for 6 months due to abcesses were the cherry on top. So yeah, it’s had an impact. Woops, forgot to mention the stroke. LMAO! I just read the previous sentence!

      1 year ago Log in to Reply
    11. JuJuB

      I have had significant joint damage over the years, resulting from inflammation of surrounding tissue (trigger fingers, carpal tunnel syndrome, and frozen shoulders) and when those things are going on, it is consuming. But since taking tighter control of my blood sugars (with a target of 90% in range, and target A1C of 5.0%), I have been unaffected by complications.

      1 year ago Log in to Reply
      1. Karen Brady

        Is carpal tunnel related to T1D?

        1 year ago Log in to Reply
    12. Karen Brady

      I would add “stressful” and/or “anxiety provoking” to the list, because the complication (retinopathy) is not very serious, I had one surgery in 2009 to fix the issue and haven’t had a problem since… but it’s absolutely hanging over my head that I might have more eye issues in the near future. So I worry a lot about it, which affects my mental health greatly.

      4
      1 year ago Log in to Reply
    13. Mary Dexter

      But according to my HMO, they don’t exist.

      1 year ago Log in to Reply
    14. Bea Anderson

      I well remember life before t1. After diagnoses I determined to maintain independence and handle self care with excellence. Diet change and realizing I shouldn’t run/bicycle without letting someone know. Great. Complications or rather fear of complications, has motivated me to time consuming BG monitoring and everything else attached to having t1. Evaluating my autoimmune damages(pancreas and thyroid) and trying to discern normal aging processes (WMD, osteoporosis, arthritis)it gets complicated. Quality of life? Health awareness. Aforementioned independence? Ha! In my world I’m the fixer, caregiver, strong one. But t1 has humbled me. A complication and a blessing to have/need a few people who can help when that rare low BG befuddlement interferes with finding my own glucose!! Not all t1’s have that.

      3
      1 year ago Log in to Reply
    15. Patricia Dalrymple

      For me, motivating. I had an awful diet before LADA T1D diagnosis. I am much healthier today with it than I would’ve been without the diagnosis. Plus, I had irritable bowel before and a change in my diet completely cured that. Quite frankly, THAT disease was life-altering. I’m happy to be rid of that. I’m grateful for insulin. I worry about growing old. No children. A spouse older. But, all-in-all, still feel luckier than most.

      1 year ago Log in to Reply
    16. Patricia Kilwein

      Some stress attached because T1D is life changing. Experiencing some other health issues that are related to it. The insulin pump is great along with cgm….. Also a lot to learn and get used to. But all in all thankful for the advances that have been made. Also very thankful for my doc and his team!

      1
      1 year ago Log in to Reply
    17. Janis Senungetuk

      Life-altering. Diabetic retinopathy hit and was misdiagnosed during the three years I was working on my Master of Fine Arts thesis show. The loss of visual clarity, color distortion and loss of sight in my left eye definitely changed my long term plans.

      2
      1 year ago Log in to Reply
    18. Sarah Austin

      I selected Other because the only complication I’ve had so far was frozen shoulder after surgery for a torn rotator cuff. At the time and through the 18 months it took to recover, it was life altering, negative. Consuming, burdensome, and debilitating. Now that it’s over, though all is well again, I’m very fortunate

      1
      1 year ago Log in to Reply
    19. M C

      Frustrating!

      2
      1 year ago Log in to Reply
    20. Daniel Bestvater

      Life-Impacting
      Most of my large joints have frozen or become very stiff and painful.
      My endocrinologist has had this happen to several of his patients. Started with frozen shoulders about 10 years ago and then gradually effected all of my larger joints. Shoulders, hips, knees, elbows and now my hands and feet.

      1
      1 year ago Log in to Reply
    21. Lauren Carey

      Frustrating

      3
      1 year ago Log in to Reply
    22. Molly Jones

      I learned that you need to have your answers decided with multiple choice. I had burdensome chosen and was thinking if there were any other aspects and the time ran out. That was decided to be my only answer by this website.
      Gastroparesis / and or irritable bowel is a problem that I have that has been attributed to T1D. I’m not sure if I had it before T1D or not, but it has progressed and makes eating and digesting not so easy anymore. It also plays big on my BG with some foods at different times.

      1
      1 year ago Log in to Reply
    23. ConnieT1D62

      Progressive neuropathic joints in my hands and feet has had an effect on how I do things. Had to give up an active semi-professional career as a dance performer due to neuropathic joint changes in my feet affecting my balance and flexibility. But hey, I studied and performed, and later taught and choreographed all kinds of dance styles from early childhood – even before being with “juvenile” diabetes nosed at age 8 – until age 55. I am now 67 and enjoying retirement doing meaningful activities and things that give me pleasure and joy even with neuropathic joints and cardiomyopathy (regulated with a pacemaker) secondary to a long life with T1D. Had early retinopathy treated with lasers back in 1982 and my eyes have been quiet and stable and ever since.

      1 year ago Log in to Reply
    24. Lawrence Stearns

      Very, very frustrating. I have worked hard from day one to maintain a healthy lifestyle with a steady meal plan and lots of aerobic exercise (running). However, my T1D and messed up autoimmune system have challenged me throughout my life. I have severe calcium deposits on both of my shoulders, that a doctor told me was common with diabetics. I have had two surgeries, and still live in significant pain every day. Also gastroparesis, irritable bowel. Celiac disease. And, a host of other related maladies. Now, my eyes are giving me problems. A1c at 6.1, usually below 6. Go figure.

      1 year ago Log in to Reply
    25. Bill Williams

      Irritating.

      1 year ago Log in to Reply
    26. Phyllis Lewis

      I have recently been diagnosed with Stage 3 kidney disease and am now seeing a nephrologist. Changes to my meds, increased hydration and decreased sodium in my diet.

      1 year ago Log in to Reply
    27. Cheryl Seibert

      I answered “Deteriorative”. A year ago with 54 yrs T1D, I could have answered “N/A”, but I’ve suddenly developed a diabetic “snowflake” cataract which will deteriorate my quality of life until I have surgery. It is more irritating I can’t see perfectly than interfering with quality of life at this point.

      1 year ago Log in to Reply

    If you have experienced complications related to T1D, which of these words most accurately describe the effect of complications on your quality of life? Cancel reply

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