What resources do you wish you had to help manage your or your loved one’s condition, but haven’t been able to find? What would your ideal support resource be, and how would it help?
I would say just these groups need to make sure that the people who lead them are not giving false information, that they’re careful. I think more group leaders need to be trained into what they’re doing instead of leading managing support groups that they shouldn’t even be leading. They lead people astray. There’s fools out there. There’s all sorts of things that are not helpful to anyone. I’m thankful for the tools I have. I usually do my own education, my own research and share my ideas with my nurse practitioner, and she’s happy to do that with me. I suppose everyone has that advantage, but it is a good way to be able to work with somebody in the medical field.
I feel like the podcast that I listen to is very helpful. Haven’t really felt the need for anything else that would be more helpful. It is frustrating sometimes that there are so many out there, but different people have different likes and dislikes, and sometimes it’s a little frustrating, just trying to keep up with what’s out there and what might work better.
If I were missing one thing for my diabetes tool belt, it would be a central resource to be able to count carbs and know nutritional facts before I eat. Counting carbs is one of the most important things for a type one diabetic, and finding out how I know what I’m eating, so I can take the right amount of insulin, is something I struggle with on a daily basis. Being able to hone in on the carbs and really hone in on my medication dosing would go so, so far into helping me find better control of my blood sugars.
I wish I had family who could actually help with this or who would understand or care to understand. Unfortunately, that’s not really something you can provide for me.
One thing that I wish that I had that I think would help a lot would be continuous glucose monitor. That way, I’d be able to tell what my blood sugar is without sticking myself all the time. But yeah, that to me, I think, is the biggest thing I would love to have that I don’t currently.
My ultimate resource would be to have a cure for type one diabetes.
I really feel like food is medicine, so if they had a very specific diet plan that was easy to follow and provided a meal box plan that provided the foods that you needed to manage your condition in the best way possible, I feel like that would be very helpful because, in this day and age, we’re busy. And also, too, with our health issues, we may not have the energy to prepare the foods that we need, but I truly do believe food is medicine. I’ve seen an improvement in my life by adding more fiber, adding more vegetables, all those things that you want to do, but don’t do until you necessarily have a health crisis that causes use to them. So I think just really realizing that food has such an impact and is medicine, and really having options within the health-care system, just like we use drugs to use meal plans and so forth delivered to your home, or cooking classes or things like that, that really help you manage your diet and help you live longer.
This one part I’m not really sure. I’ve always thought it would be fun or not even fun, beneficial to have a support group and with everything going on in the world with COVID there isn’t one. I don’t know if it would be possible to find one online, but I want small groups, I don’t want something with 20 or 30 people where you never get a chance to talk and you’re fighting over one another. Something with like 10 people maybe. I think it would be beneficial if there’s some way to have like online support group through Zoom or some platform like that, to be able to talk with people either on a weekly or a monthly basis to really just have a community and have the support there because I don’t know how many type 1 diabetics around me and there’s no way that I really know of to find them.
I find the two things that I really wish would be a more clear understanding of what technology is out there, how can you get into studies to be part of the new technology that’s being developed, and when is it coming out and how much, what insurance covers what. I mean I guess that’s like almost impossible because every single company has a different policy, but what are all the tools out there and things that we could be using and bettering our lives with? That I think probably exists on different websites. I just wish that it was a little bit easier to do, especially with the studies, being parts of studies. There is some sort of website I eventually found that you can use to find the study, but then you have to kind of email from your own email and they make it super difficult. I don’t understand why it isn’t automated to just sign up for all these studies using your own information. I really don’t get it especially when I live right next to the Barbara Davis Center. I don’t understand why I still haven’t been part of a study. I just don’t get it. It seems like you almost have to have an endo advocate for you to get in one. I don’t know. The other thing honestly, there are message boards that are out there that are decent. On Reddit, there’s a lot and on Facebook, there’s a group. That’s okay. A lot of my other questions I think that come up that I can’t find answers for are actually related to my CGM and Pod and different specific scenarios of, “Hey, can I take it through this type of x-ray machine? Could I … What happens if I go through this country and am I going to have problems?” Things like that and how much liquid can I have. I think travel is one of the most stressful things related to diabetes and knowing all the regulations and rules and what can go through what type of x-ray machine and not and what to do. Are you supposed to have a doctor’s letter and all that? I’ve seen some resources, but it still doesn’t go to specifics for each different type of device that exists. Even the little booklets that come and have that information with each device aren’t really specific enough. So that’s another thing that would be nice to have some sort of like travel resource where you can filter for your specific device and it gives you specific guidance as to what to do when you’re going through security and stuff like that.
Well, when you get assistance from food banks or you get the Meal on Wheels which is supposed to help people out with getting meals, they’re not diabetic meals, so she can’t join them, she can’t go to the food banks to get assistance for help because they don’t give diabetic meals. There should be more programs out there to financially assist and help people with diabetes.
I suppose in this day and age, I would love a resource that help people out with supplies. As my daughter ages and I realize one day she will not have me around, I wish there was a place that people could go to, where supplies could be exchanged. And maybe that would not be ethically, right to exchange medical supplies, but insulin is unaffordable right now for many of our population, and I worry that when she’s older, she won’t be able to afford the insulin she needs to live. I wish there were exchanges set up and right now they’re sort of black market underground. I wish there were public exchanges that people could exchange things like needles they’d need or prickers and test strips and insulin and ketone strips and all the things they need to stay alive, because our healthcare system has so unfailingly just failed them so much, that the copays are unaffordable. I wish there was resources like that. Ideal support resources. I really don’t know of any that I would think of, what an ideal resource would be for me, how it would help. I guess I just envision something, when she gets older, a place to go, if she ever needs supplies. That’s the only thing I really envision for her as she grows up.
There’s not really any resources that I wish were available because I feel like I’m pretty comfortable with the things I have now, but maybe it’s just because I haven’t really thought outside of the box. But if there was some resource that would often tell me maybe clinical trials for type 1 diabetes or diabetes in general, and maybe the obstacles that they’ve overcome over the years and maybe getting closer to better treatments.
I’m not sure that there’s any one glaring thing that stands out as something I’m lacking in managing my condition, some resource, but I think just good access to doctors, easy access to medical professionals to be able to submit questions through your healthcare provider’s office, interfacing with technology, websites, cell phones, apps. All that stuff that just makes access easier, would only improve care if someone had a condition and a quick question that they just needed guidance on. I can’t say that jumps out to me as I’ve not really had that need, but I think that could be useful for people.
The biggest resource I wish there was was affordable medication. I wish I didn’t feel locked into a job due to the benefits. I wish I could pursue something without healthcare. I don’t know if the US would move towards more of a centralized universal health care, but I don’t know how to solve that problem. If I didn’t have the burden of constantly having to be on healthcare and constantly financially having to pay for so much just to make it day by day. That’s all I can dream of. Maybe someone to teach me more about healthcare. I think that would be a huge resource and what to look for as a T1D. Just how to navigate the systems we have in the US and how to be a better advocate for myself, I think, would be a huge help.
I don’t think anything like this has been invented yet, but I wish there was kind of an app that you can use on your phone, where you can scan or take a picture of your plate and it can analyze what’s on your plate and give you a carb count of what’s there.
I personally don’t need one, but a one-on-one diabetic coach from a place like diaTribe with actual diabetics.
Resources, I wish that we could get pancreatic transplants and that it would be a lot easier than what it is. Or STEM cells would get the pancreas going again so that some of the complications that we Type 1 sometimes encounter would be reversed or held at bay, and you wouldn’t need daily injections or walk around with a pump attached to your hip. Support resources would be exactly that, that it’d be nice to have those available for everybody.