Introducing myself

Hi everyone. I'm a big fan of social media as a way for people to connect with each other and share experiences. I've lived in fairly rural communities most of my life, and often connecting with folks via social media is the only way I can share with others in similiar situations or with similiar interests.

I've been a diabetes educator for about 20 years, and I've encouraged the folks I work with to check out online forums for support and information. I finally decided that I should also participate online so I have a better idea of what the forums are like, and also to offer my perspective.

I really like tudiabetes' tagline: a community of people touched by diabetes, and I'm looking forward to being a part of the conversation.

Hello Lynn:

Good to have you at Tudiabetes. I, for one, am happy to have found the DOC many years ago especially Tud. The medical profession is helpful and sometimes life-saving but we find it is also advantageous to learn from people who actually have Diabetes. To learn from their experiences and advice, how to avoid some complications. The details are more intricate. We also learn from people posting new devices and what's in the current info news-wise from online sites. We are all different because we come with different issues. So one book doesn't cover all.

People from Tud give and receive needed support. We also meet online friends and even get to see them in person sometimes. :)

It's great that you encourage your clients to indulge in online forums, so they won't feel alone and clueless like most of us have for years, with this disease.

Humour is also available here. Laughter and a positive attitude is usually the best medicine taken daily.

Lynn, I'm so glad you joined and posted. I agree with you that the DOC is a tremendous resource that is under utilized by medical professionals and patients alike.

I also live in a rural area but have only met one other T2 who is striving for tight control. Most of the rest seem to be doing their best to ignore it with predictably grim results.

I find having so many others like me, who try to achieve tight control here on tuD, is both a resource and motivator for me.

Welcome. I'm glad you joined us. I do think social media can help reach people who are distant, but I think many of us have found that diabetes is also 90% mental. We can know all the stuff we are supposed to do, but we have to decide to do it, day in, day out. And being with other who understand this and provide support makes a huge difference.

Thanks for the welcome everyone! Brian, it's interesting that you said 'we know all the stuff we are supposed to do, but we have to decide to do it, day in, day out.' I had this exact discussion today with two of my clients, and they both talked about zeroing in on the reasons why they do all these tasks is crucial. If their doctor told them to do it, but they don't see value - they often skip that task. When they see real value in completing the task, then it becomes something they want to do. I know it's not that cut and dried, but what do you think about focusing in on the value of each task, and then deciding what's right for you?

I have to be honest. I can know what the value is. But all this stuff can just drain you and burn you out. I can know in my heart the value of taking care of myself. But that doesn't mean I can summon the fortitude to do it in the face of the adversity of my diabetes. Sometimes, no matter what I do, my blood sugar is not well controlled.

Hi LynnRD - I am T1D for 48 years. I don't focus as much on the tasks, as I do on the end results / goals. I think you are hinting at that when you mention the value of the task. For me, my main goal is achieving the best BG control, by making task by task decisions that more likely will lead to better BG control. If the PWD doesn't start with the belief in their heart that BG control is important, then I can see how it's easy to not do the tasks. I did that for many years in the 80's, until I lost some vision due to retinopathy. In the 90's the DCCT studies proved that better BG control reduces complications, and it finally sunk in for me. Having improved tools such as BG test meters, carb counting, MDI, then insulin pumps/pens/faster insulins and now CGMS have provided more and more motivation to me to strive for and achieve better BG control.

So if the task is choosing which foods to eat, my self-talk is, which food and how much will lead to better BG control. If the task is to do more BG checks, my self talk is, will knowing my BG help ME evaluate my choices, and possibly do something different next time. (Too many people simply test without knowing how it can help them, but test just because the Dr told them to test.) Etc, Etc. If I evaluate simply the task itself, without aligning it to a goal (value) I believe in, then I'll likely not do the task.

But I don't measure the results task by task, since as Brian noted, sometimes we do everything right, and the numbers just don't line up. It's easy to say "What's the use, I could get the same result by eating the chocolate cake or pizza"! Most of us come to some acceptance and expectation of that, and don't give up when it happens, or beat ourselves up. We also give ourselves an occasional treat, and be ok with sometimes missing our targets.

I believe DOC, and TuD are important and helpful tools, but might not be for everyone. There can be conflicting advice, and sometimes inaccurate advice suggested. Posters offer solutions when they misunderstand, or know minimal details about the individual asking for help, and the suggestions may be inappropriate. I think in general, TuD is pretty good at having posters that contradict or correct a previous posting, or offer alternatives, but that can potentially overwhelm or confuse someone new to diabetes/DOC format.

Thanks for joining and posting! I've always figured there's a doctors'/CDE/ nurses' forum somewhere where they go "OMG, those Tu people are wingnuts!!" but I'm always interested in the official perspective. I agree that the connecting is my favorite part of Tu.

You're absolutely right Brian that sometimes, no matter what you do, your blood sugar won't be well controlled. In my way of thinking, that's not your fault - it's ultimately the responsbility of researchers and the medical community to come up with new strategies.

What really sticks with me from your comments is the way you tie value with the tasks/goals. Value is very personal, and each person has different values that figure into their daily decision making.

Well, there is a forum at AADE, the American Association of Diabetes Educators, but I've never heard anyone say that the TuD folks are wingnuts :) And now I can tell them honestly that the folks at TuD are thoughtful anf helpful.

Over time I've had a number of healthcare professionals tell me explicitly that patient groups and social media are "dangerous." That patently wrong information is given out and there is the potential for harm. For some years I had led a face to face patient support group at my local diabetes center, but I was ousted with comments by the center that they did not want patient led discussions because dangerous information might be presented.

It is true that times are changing. Anyone who has spent time here can attest to the "wisdom of crowds" that emerges. If somebody comes here and claims that their raw vegan toxic cleanse cures diabetes the community "self corrects." But it is also true that there are strong voices in the patient community in direct conflict with healthcare guidelines. In particular, the patient community is very low carb friendly. So I guess in that way, we are dangerous. Hopefully in a good way.

Hi Lynn, I'm glad you have joined us. Since we live with this 24/7, in a way we are the experts; at least of our own bodies. I have had too many professionals telling me things and they often have no real clue what it is like to live with D. I like that you tell your patients to look to social media for support.

Is it 30 Bananas a Day?

I think there’s always the potential for misinformation in online communities/the internet as well as “credible” sources. I think it’s wise to evaluate everything you hear whether it’s from the DOC, or a healthcare professional, or the latest research and decide for yourself whether or not the information is credible, helpful or applicable to you.

Please don't do that. If you really feel like you need potassium, please just eat spinach.

It's good to hear that people here are willing to throw out new ideas, have a discussion about the pros and cons of various recommendations, and then make a decision that works for them.

Diabetes educators now are taught that the PWD is the center of the diabetes team, and that they are in fact, as you said, the experts on themselves. The rest of us are there to support and encourage them, not tell them what to do. Sometimes people need information, but like so many here have said, it's what you do with that information that's important, and that's where each person makes their own decisions.

In a cost/benefit analysis, non-diabetics see only the benefit, but have no handle on the cost.

As in, "benefit" good health and a long life free of serious complications.

"cost", on the other hand, is all the effort, bookkeeping, tracking, and the various impacts on Quality of Life that most non-diabetics never have any clue about, and we live with every day.

As discussed in another thread weeks ago, something as simple as walking down the boardwalk at the beach on a Saturday with friends, and having an ice-cream cone on a lark. It's a meaningless, cost-free decision for most people. They have no idea what the same act means to a diabetic, and the follow-on work/effort triggered. Non-diabetics pay their money, and eat the yummy ice cream. Diabetics scramble around to estimate the carbs, check blood sugar, some bolus some insulin, or simply can't have it at all (many T2's). Rinse and repeat dozens of times a day.

I think this is a big factor in the "deciding to do it" part of managing our condition. Dealing with this disease is much more work, and constricting of life than anyone without diabetes can fully appreciate.

Plus, with diabetes, we always have the option of testing new approaches literally.

I dunno if every CDE is taught that PWD's are the center. I have had very good experiences but don't get a lot of coaching because I do ok on my own. Occasionally we get reports from members who don't have the same experience and encounter medical providers who are not as supportive and sometimes seem to cause problems for patients. I don't think I see as many of them as I did when I started hanging out online in 2008 so perhaps the medical industry is being responsive but I'm still tempted to toss out an "endork" every now and then when we get reports, although too, I realize we are only getting one side of the story.

Brian (BSC) has a good thread from a couple of years ago detailing his investigation, findings and then efforts to get his doc to rx him some insulin, which failed. He then took matters into his own hands, got some OTC juice at Wal Mart, tried it out and took his updated findings back and rubbed the doctor's nose in it. Well, maybe not quite but it was a pretty interesting story that someone would have to go through all of that in this day and age. Many of the folks who have detailed problems seem to hit points in the existential reality of diabetes that are perhaps at odds with current medical guidelines or maybe these are "local" guidelines at a particular clinic or something like that.

The thing that sets me off the most is the notion of not aiming for normal BG because of the alleged dangers therein. I totally agree insulin is strong stuff and needs to be handled with care but to handle it carefully requires test strips, whether you aim at 120 or 140 or 85. If you aim at 85 and are a bit off, you can run into some problems but, as long as you are prepared with snacks or a plan to deal with a low, the consequences the other way are what, 100-110, which is pretty happy for many of us too. If you are aiming at 140 after dinner and are off by 20-30%, pretty soon you're not too far from 200+ where problems occur. If your target is up there, it's very easy to think "that's not too bad" which may be the case, as many long-timers like Richard157 and Spock have dealt with elevated BG for long periods of time. For me, it's about the odds and I think that normal targets are much more likely to lead to normal BG than the current set of targets. Diabetes is a huge amount of work but I would like to see providers helping people discover a balanced approach to normal BG rather than BG targets that are still the sort of numbers that can get you diagnosed in the first place.