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If you’ve lived with type 1 diabetes for more than 10 years, what resources do you find most useful for your continued diabetes management education? Select all that apply!
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70 years T1D from age 21 … At first it was local primary care doctors.. Then around age 42 moved cross country and asked at local hospital for recomendation. They sent me to an ENDO doctor who said to me “you do what I tell you or I will NOT take you as a patient.. That was around the time the A1C thingy test started…. He insisted I had to have my A1C be as a NON- T1D person… We did not have the stick your finger at that ime yet … still on the color strip pee test… that blew up my brain and I could not remember things any more…. So I went back to local primary doctors and my own self doctoring… My last doctor of 25 years said to me , “Im not going to tell you what to do about T1D, the sick people are in the waiting room” …
Sweetcharlie–for having a “blown up brain” I’d say you have a near genius existence, at least experience wise. Pity such learned endocrinologists know everything about the text books and nothing about the human beings.
Bravo, Charlie! My diabetic labradoodle, also a Charlie, would have loved you! Experience is such a good teacher. Great teachers at Joslin in the beginning, 69 years ago, and the experience of a lifetime. It just takes a bit of grit!
Thanks to Ahh Life and Pru Barry for comments !!!
Also, my sister who also has T1D
My wife of 57 years, I was diagnosed 58 years ago
She trained as a nursing Sister and over the years has developed a wide range of understanding of foods. Especially their impact on BG.
Mostly from others who live with T1D themselves. I have had the good fortune to have been under the care of two endocrinologists. who are T1D themselves. Plus as a RN, CDCES I have several colleagues who are also T1D and we turn to each other for advice and support. Nobody “gets it” like those who live with it.
My sources are my Endo (who is not technically a doctor), and this website.
How is your Endo not a doctor? I’m confused
My “Endocrinologist” is an ARNP, Nurse Practitioner in the Endo unit at my hospital.
My Endo is somewhat helpful but sometimes I find I know of new advances before he does. If I need info I will go to YouTube. I know the people who I deem trustworthy. I used to depend on books but have read most. Recently was having dawn phenomenon and couldn’t figure out why. From research I changed my long acting dose to night time. I was doing twice per day. This morning no high BS. Bottom line is that I use resources available to help with a specific concern.
The pregnancy with T1D book by Ginger Vieira was and has been the most useful resource I’ve ever come across. My endo is not helpful and I basically only see them to get prescriptions renewed.. those appointments cost too much for them to look at the data and say “everything looks good!” 🙄 Groups on Facebook are sometimes helpful.
I’m so glad! Find me on Amazon for my latest books. 😉
The Joslin Medalists Study done at the Joslin Diabetes Center in Boston has been very helpful. I participated twice in the Study. Important findings have helped explain my good health after 77 years with type 1 diabetes.
I have learned much more from the Juicebox Podcast than I have from my medical team, and I really like them! I was able to get my endo to start listening too. There are so many tips and tricks on how to take control of your health in a very easy to understand way.
I will have reached my 47th year with Type 1 as of this summer. Besides having a good endocrinologist, I believe that I can attribute my ood control in the past 23 years to 2 books” Dr Richard Bernstein’s “Diabetes Solution” which made me aware of the critical role played by carbohydrates in glucose levels and Gary Scheiner’s “Think Like a Pancreas” which increased my understanding of how my body functions in relation to diabetes. Both inspired me to change habits that were not conducive to good diabetes control. A friend forced her copy of “Diabetes Solution” on me and, because I loved and respected her, I felt I needed to read it. It was a game-changer. I learned about Gary Scheiner’s book through a now-defunct Diabetes user group called “Diabetic Connect”. We can never learn too much about how diabetes affects our bodies.
Juicebox Podcast, hands down the most informative and helpful ❤️
Agreed!!!!
I get considerable help from my endocrinologist and his team but I also get significant help from the Facebook group I participate in where we share our experiences with Tandem and Control IQ.
I put support group or other social gatherings because I figured that was closest. I have a large number of friends who are T1D, so hanging with them is key. Sometimes something comes up related to T1D, but that’s not the focus of us gathering
I guess the DOC (Diabetic Online Community) is now spread so broadly into things like podcasts, YouTube channels and other digital media as to be too broad a term to be meaningful. But I learned far more in my first few days on sites like TuDiabetes than I had learned in 20 years with only physicians and twice-yearly appointments to go on. The best way to learn about T1D is from other people with T1D.
PubMed
I checked three things, including “Other.” “Other” includes magazines I have read over the 53 years I have been diabetic, and I still read one of them. I have read a professional journal, even though I am not a doctor. It was way ahead of what was being recommended by U.S. doctors at the time. I stopped when I moved to England and could not get it there. The magazine I read now, Diabetes Self Management discusses research, new equipment and recipes, as well as personal stories. I do not get much from personal stories, but in T1D groups I learn what others are finding with their management, which is something a doctor either without diabetes or with Type 2 cannot appreciate. And when I was in England, I knew more than most of the doctors I met. I was finally permitted to meet annually with an endocrinologist who was really up to date on Type 1.
There are no support groups near my home address in chester springs PA – I have checked facebook for years and then eventually tried other websites but I am out of resources – I have gone down every rabbit hole for in person support groups that google could provide for me
have you tried starting one? that’s what I’ve done when I couldn’t find one that existed… takes a commitment, but can be fulfilling.
I have received more ‘valuable’ info from the Juicebox podcast than any other source. T1d for 31 years.
In 25 years saw five endocrinologists, A herd educators, and a flock of doctors. Only 1 endocrinologist seemed competent (my 2nd said I was too old to be a TYPE 1?), several GPs were promising, 2 eye docs seemed more adept with diabetes itself than “specialists” (endo~). Could be my fault or personality, the educators possibly felt because I lived at the library (local and UAB medical), knew all the big words, knew more than I did.
But just like a doctor specializing in hormones (endocrinology) doesn’t necessarily know how to dumb down information nor transfer day to day knowledge to a diabetic, all the books I can read (Bernsteins and Atkins) all periodicals (Diabetes Self-Management, Diabetes Forecast) can’t really bring it to actual control. I 2nd, 3rd, and 7th the Juicebox Podcast.
Once you get past your mother isn’t there to watch you sleep, it’s you.
I like the Diatribe emails and website.
What I would really find helpful after 67 years with T1D is a case manager.
When first diagnosed, I read all the books and publications by American Diabetes Association, applying the recommended habits and practices where I could. Once I was put on a mini-med pump back in 1995, my life completely changed for the better. The books “Think like a Pancreas” and Dr Richard Bernstein’s “Diabetes Solution” helped me better understand the relationship between insulin, carbs and activity. I learned confidently how to monitor and make basal/bolus adjustments where needed.
These days, I take a more personalized approach to eating and health. I got my genome analyzed and I understand so much more about what I should eat (or not) given how my body absorbs (or not) nutrients. I use google scholar as my search engine to research papers, so I that understand the various SNP’s which make me who I am. Now, I go to my endo and he runs specific tests to monitor how my diet, exercise and vitamins/minerals are affecting my exocrine and endocrine system so that I can lead the best life I can.
My current diabetic specialist nurse practitioner is very good. But I also read Diabetic Forecast when jet was available. Now read one called Diabtes self management. My experience like others is that I’ve usually been ahead of the medical staff on what’s new and getting good results. 63 years of t1d.
Being around type two diabetics and showing them the right things to do, and eat.
I’m currently under the care of a good endo and previously had the fortune of being under the care for 10 years of the professor/physician who taught medical students endocrinology at the University of Wisconsin medical school and was an excellent physician. Over the last 68 years living with T1D two CDEs have been especially helpful, I’ve consistently found the diaTribe newsletter beneficial, but I think I’ve probably learned the most from talking with other PWDs, either online or in person.My years as a participant in the Joslin Medalist study has provided valuable contacts and attending the first Diabetes UnConference in 2015 and meeting 90+ other adults living with diabetes was a profound experience with a positive continuing impact I’m still engaged in.
Social media postings.
Facebook diabetes groups like Looped
I love the TuDiabetes site when I have a question or challenge I can’t figure out on my own.
I used to go to medical school libraries to keep up w/ latest research in diabetes. Still refer to Bernstein books. When living in a bigger house I started a diabetes support group. Used to support & read magazines from ADA, then JDRF. I used to attend medical research forums. Now I rely on my smart diabetes tech team and an endo plus websites like this one.
Diabetic for 40+ years. For many years I read the Diabetic Self Management Magazine (I believe it was montly) which I don’t think is around anymore.
It is still around! One of my books is going to be featured in the next edition! 😉
T1D 56 years. With technology’s increasing effect on the success of diabetic management, I’ve used online T1D Support Groups (Facebook mostly), insulin pump and CGM websites, and online diabetic groups (T1D Exchange, DiaTribe, etc.) to find better ways to manage issues (morning rise being the most problematic). I still rely heavily on my endo and diabetic educator to handle long-term management issues (aging, menopause, caregiver’s stress, etc.)
Almost never. The majority of available information is geared solely toward our T2 “cousins”, and therefore entirely worthless/useless to someone with serious T1 experience. OF the few sites/podcasts the serious majority of them are geared toward raw beginners, never towards “elders” T1’s with decades and decades of serious experiences.