What tools or resources have you found most useful regarding your or your loved one’s condition? This could be a website, a specific organization, or an app for your smartphone. What makes this resource (or resources) useful to you?
I hang out on the IP Insulin Pumpers list and the TU, T-U, Diabetes website for forums, to ask questions. I belong to a Dexcom and Omnipod Facebook group. I’ve been able to go in there and just put out questions that I might need help with. I do belong to a Libra CGM group and had a really bad experience with them about two weeks ago because they put out completely erroneous information about a new product that’s coming on down the horizon. And so it was very, very frustrating. I think people on the internet can be either wise or fools and you have to know what you’re doing and what you’re dealing with. And you have to be able to sort it out. Also, seeing people on the internet who say, “I don’t need to know how to work my pump. I let the doctor do it for me.” And that’s another thing that just makes me nuts because that’s absolutely ridiculous. That’s why you have the buttons on the pump, so you know how to use them. And I’ve run into that on social media where they say, “Well, I’m not going to do it. I’m going to let the doctor do it.” And that’s a real foolish way to live your life. So some websites are good, some not so good.
My Fitbit is very helpful. It helps with managing my diabetes because I know how many steps I’ve taken each day and can look at it during the day and realize that maybe I need to be a little more active that day. I also have found a podcast called Juicebox Podcast, which is a very helpful podcasts, I believe, especially for people who are newly diagnosed, but it also has a lot of tips and suggestions for those of us who’ve lived with it a long time. The person that does the podcast has a daughter who was diagnosed when she was two, she’s currently 16, and he interviews people also living with the condition. He also has a diabetes educator from time to time and other health professionals that do a wonderful job with talking about the day to day things you experience with diabetes. And also I’ve learned a lot of good suggestions and ways to manage diabetes.
My Dexcom Continuous Glucose Monitor has absolutely been the most beneficial resource and tool that I have for my diabetes. It allows me to check my sugar every five minutes without having to poke my finger. It lets me know when I’m going high or when I’m going low before I know it, and I can take treatment to keep myself in a safe level before it gets unsafe. So it lets me be proactive instead of reactive.
Text com that allows me to keep track of what my kid’s blood sugar is doing, Sugarmate that helps wake me up in the middle of the night if the blood gets out of range. The Type 1 family network on Facebook, which is good for any number of advisor or resources available or Camp Sweeney. Up until this year, my kid went to every single year. It’s his favorite place on earth, and is his own community and helps him learn how to cope with this.
So I don’t have an app that I use. My doctor gave me information specifically about my condition just to make sure keep things where they need to be. It was more of a pamphlet style as opposed to something on a website. So I just try to make sure that my sugars stay within the normal range and based on what we’ve talked about and the information that’s in that pamphlet. So anyways, that’s about it for that this one.
I would have to say an organization called Dogs4Diabetics, which is here in Concord, California and is the area that provided my service dog to me, has been the most useful when it comes to my diabetes as there is a large group of Type 1 insulin-dependent diabetics. And the founder of this is also an insulin-dependent diabetic and a forensic scientist. So, the staff there are all volunteers, but there are diabetes educators, nurses, people from various walks of life that are involved in the diabetic community, who often let us know ahead of time of what’s coming down the pipe for insulin pumps or testing and trials and things like that. So, they’re my biggest source of information, next to my endocrinologist.
I really feel like one of the things that’s been super helpful to me personally has been the InTouch software, the glucometer software, because it just syncs with my Kaiser doctors and they can take a look in real-time anytime they want to at my results. That’s been helpful for my nutritionist and for my doctors at Kaiser to kind of help me establish a place that really manages my diabetes. I would say the tool that I use that’s the most helpful would probably be my glucometer and the software on my cell phone. I have an InTouch glucometer and the software on my cell phone that syncs with my doctor’s computer, or app or whatever. Thank you.
I think one of my most valuable resources has been, I have this food scale and of course, I can’t remember what the name of it is right now, but you type in codes for different food items and it’ll pop up and show you the carb portion. For like an apple with skin, it’ll show you that. It’ll show you for pasta, things like that. I just looked it up on my Amazon account and it’s the Greater Goods Nourish Digital Kitchen Scale. That is super helpful for me in just trying to figure out carbs for insulin dosing. Other than that, I don’t really go to a specific website or organization. I kind of just peruse Instagram and see if there’s new information out there. If I get an email from something, if my doctor tells me about something, I really try to stay in the loop with new technology and things that are coming out. I’m one of the first people to know, because I am obsessively researching, trying to find better ways to help me with my health. A lot of that is done through social media platforms, following the manufacturer, following the company, following I don’t know what you call them a spokesperson or whatever for the company. And that is what helps me and the resources I use.
The Bright Spots & Landmines is a great book to read about diabetes management. Having my Dexcom CGM is invaluable. I could not manage this properly without it. Everyone should have a CGM. I think my Omnipod has helped a lot too big being able to take insulin in smaller doses and not having to hide in the bathroom to take insulin in a dirty bathroom or with a pen, and just being able to do it right at the table and not feel embarrassed about it has been nice and made me feel more normal. Also, the JDRF website’s pretty great. I wish I’d had time to read more of it. But for example, when COVID-19 happened, I definitely went to their COVID-19 resource page and read everything about their recommendations for type one, related to that. It made me feel a whole lot better, and they even did like a not a podcast, but a video, live video with a doctor about COVID and type one. And I watched that and that was really useful too. So JDRF is awesome. I believe Beyond Type 1 is also pretty good website. I’ve only been to it a little bit and I do have an intent to read more of it.
Diabetic cookbooks, diabetic recipes online, different people online on Facebook, underneath the diabetic group for Diabetes for our Children to Adulthood, all their support and caring helps out a lot.
The tools and resources we’ve used have sort of evolved over time. There used to be great resources on, I think it was a sort of a group chat feature. Before Facebook and everything, there was a group chat feature where diabetics got together. I can’t even remember the name now, but groups like Beyond Type One are wonderful, the diabetic online community, T1International, which asks for accessible and affordable insulin for everybody in this country and the world. Those resources are great. There’s carb counting apps, we used to have on her phone, which helped her count carbohydrates in the foods she ate. Also, blogs. I found a lot of type one diabetics who have blogs, who I would read over time. There’s one, Six Until Me, run by Carrie … I can’t remember her last name. Carrie Sparling, who as a great blog and learning about. She was also six when she was diagnosed and she’s a young woman now. Those kinds of resources they’ve sort of changed over time. Websites have sort of come up and then gone away, but sometimes JDRF and sometimes American Diabetes Association, though not lately. In the beginning they were very helpful, though not as much now.
I think the FreeStyle Libre link app has been one of the most valuable resources for me in my condition. The ability to scan my blood sugar from my cell phone to my continuous glucose monitor and not have to carry an extra item in my pocket anywhere I go, be able to see on the app my daily and weekly and monthly average blood sugar readings, the current trend of my blood sugar, if it’s dropping fast, if it’s increasing fast or if it’s staying steady, that’s been a huge, advantageous tool.
My biggest resource that I use is Dexcom G6, that also comes with an app, so I’m able to track my blood sugar 24 hours. I also use the Facebook group called Dexcom G6. It allows me to communicate and understand diabetes better, ask questions to others with diabetes and how to manage it. I also use Instagram for recipes. I follow tags such as keto, low carb, paleo, or high protein diets.
Some resources that have been truly helpful in my life, Beyond Type One is a nonprofit organization solely based on education and social media about type one diabetes. And they have a app platform, which is kind of like a Instagram, Twitter communication combination, but their website itself also has so many informative articles and it’s just very easy to navigate and very easy to understand. They put things in language that anybody can understand. Their resource has helped me tremendously when it comes to more the medication side of things. T1D International has helped me a lot, another nonprofit organization with understanding advocacy for type one diabetes and access to medication and supplies. And the lack there of for most has been a huge help. Another app, the Dexcom Share has been, I think it’s amazing to be able to be wherever in the world and have your loved ones connected to you and know you’re okay, and give both you and them that peace of mind has been truly helpful for me. I’m trying to think if there’s any other ones that I’ve missed. JDRF as well has been helpful in some way. They’re my employer. They’re incredible health coverage benefits to their employees has relieved the burden of the financial cost of diabetes medication from my life. And I am truly blessed to be able to have a job working for them and helping connect and grow the community for type one diabetes. Sources were three, JDRF, T1D International, Beyond Type One, in all aspects and all platforms and apps and everything that they have has been truly helpful. And the Dexcom Share, I think is the biggest one that has made a difference in my life.
The most helpful information that I have is the software that comes with my insulin pump from Medtronic. It is the CareLink system that allows me to upload my information from my pump so that my doctor can look at it. I also find calorie counting websites, like My Fitness Pal, helpful for being able to calculate carbs. As far as resources that I wish were available, I don’t think has been invented yet, but if there could be something like you can scan with your phone, for example, your plate, and it can analyze your plate and tell you how many carbs are on it.
My Dexcom Continuous Glucose Monitor, because 288 readings a day gives you all the data you need to adjust. Two, diatribe.org has wonderful information, especially landmines and bright spots. Three, Facebook groups with actual diabetics.
The CGM, Continuous Glucose Monitor, is a heaven-sent. It tells you what you’re doing, where you’re going, it helps regulate it everything. And second, would be the insulin pump. Hands down, they keep me alive. And it’s the app going to the phone, which the Dexcom, I’m on a Dexcom G6, is fantastic. And then I also have the phone going into my watch so I can just glance at my watch instead of pull out my phone or pull out my pump to see what my sugar is and what’s happening, where I’m going. Wish these were around for a long, long time, or that they were available when I was younger.