We form a community of people with diabetes and we share certain basic characteristics. We’re all engaged in treatment plans that include a variety of pharmaceuticals, technology, as well as diets and exercise. Some of us use insulin, others pills, and some even just use diet and exercise.
We realize that all of us are not alike as is evidenced by the community held belief that YDMV or your diabetes may vary. We do share characteristics with a portion of the community, sometimes in striking fashion. It’s this resonance with certain other members of the community that fuels to a significant extent the motivation to return and interact.
A spectrum of psychological and emotional temperaments and response to our individual diabetes is spread across our demographic. There are definitely different flavors of personal style that we each respond to the same diabetes realities.
I’ve noticed reactions from some in the community when they respond to certain aggressive treatment regimens and philosophies. This was a common element of the contention between different camps in the extended and at times emotional low carb debates.
I see a dark side when a member shares success with a certain blood glucose control tactic. People sometimes respond in a negative and challenging way. They argue that this report is either not true or that only an obsessive personality would deal with diabetes in this way. I suspect that this flows from an insecurity or vulnerability that we sometimes feel about our adequacy to deal with diabetes.
I know that some people see my personal diabetes philosophy is overly aggressive and therefore must flow from an unhealthy personal characteristic, like obsessive compulsive disorder. The topic of whether to correct a 120 mg/dL blood glucose level or not is the latest example I have in mind.
I’ve not taken much offense when this arises as I feel confident that my diabetes behavior is appropriate for my wellbeing. The aggressive tactics that I use make me feel better, both physically and emotionally. Spending more time in range is a measurable statistic that does bring me significant benefits.
Whenever I want to post about successful personal diabetes trends, I know that some readers will be discouraged or otherwise negatively affected. I don’t feel a need to show off but I do take pride in what I’ve been able to do with the current modern diabetes tools. I do like to think that sharing success may motivate others to consider their personal situation and start off in a new direction. I’ve seen this happen and it brings great satisfaction to me. The negative effects of this still bother me. Maybe that’s just the way it has to be. What do you think?
My opinion on this subject - like any healthy debate/ robust discussion, each of us is free to express ourselves as food for thought. And we each should use what we find helpful and leave the rest. I personally appreciate the diversity of opinions shared on this forum and have come across many suggestions I’ve adopted … some many months after first reading them!
When I first started visiting TuD, I was a lurker. I found the discussion interesting and felt no need to add my point of view. This was during the fractious low carb discussions. Dr. Bernstein was/is a focal point for the low carb proponents. I remember someone offering the same advice about Dr. Bernstein’s philosophy. Someone wrote that it’s a valid position to take whatever portion of Dr. Bernstein’s philosophy and tactics that you agreed with and just leave the rest.
Terry, I regard you and a few others as shining examples of diabetic self care. Not only that but you are always willing to help others with their problems, people you don;t know but who share the same illness as you do. Carry on posting, success stories are an inspiration to us all.
The phrase “your diabetes may vary” was a wonderful discovery to me, very liberating! To learn that each of us is unique in our experience of diabetes, i.e., that there’s a lot of variation in our bodies’ responses to carbs, meds, exercise, etc., was a giant step beyond what is taught in those first few diabetes education classes. I really appreciate learning about what’s working for other people and, as @Millz said, find that over time I am ready to try something new. The forum is also a great resource for finding information about a diabetes management problem that pops up in my life. Real discussions, with all the pros-and-cons that might arise, give us a chance to see another perspective and truly connect with one another.
From following TuD I’ve learned some highly valuable techniques like carb-limited eating and using extended boluses for fat and protein metabolism.
I know there’s another thread about appreciating doctors. There was a time I was very disappointed in my doctors’ ignorance of viable skills that reside more commonly in the patient community. I’ve learned things from other members here that most doctors don’t know.
Health is a very personal issue and for people in this group, whose efforts to manage our blood sugar consumes a large amount of our daily frustrations, it is natural to be a little irked to see someone who is able to do it better than us.
What personally irks me is when i feel like I’ve gone to tremendous frustration to find what works really well for me and I share it with the world here and am met immediately with “well that wouldn’t work for me because____” as if I’m not intelligent enough to realize that it may not work for everyone… or even more so, as if my experiences can’t possibly benefit anyone else, because I’m just one somehow exceptionally gifted or physiologically blessed person.
My reality is very similar to other people’s here. I spend a lot of time every day worrying and fretting about my blood sugar. I didn’t ask for it. It affects my life in ways I don’t want it to and I really struggle with. But I share the things I’ve found to work well for me, and sometimes I feel like it’s received poorly.
Another thing, very different, is when people who don’t even have or aren’t even affected personally by diabetes (or just make their living talking about diabetes) chose to go way out of their to way spout off when I remark about positive results I’ve had. This is primarily seen on this forum when discussing afrezza. I don’t mind when well intionened people join to share info. But when people who have no skin in the game join just to spread negativity and talk trash–That truly bothers me to no end. If this were not an internet forum, it would likely provoke me to violence. That is an entirely different thing.
You can’t control the way people will react to things that you post. If someone has an experience they think is worth sharing, or has questions they think are worth asking, I think they’re worth posting! For some, the idea that someone with Type 1 diabetes can achieve an A1c of 5.5% may be the first time they’ve ever come across such a notion. They may react with negativity or disbelief at first because they don’t understand it. But, if it piques their interest and they are interested in achieving better control themselves, they will hopefully stick around and learn.
I do wish that the Flatliners group focused more on day-to-day management and strategies than on posting long-term aggregated data. The long-term data is hard to achieve and worth celebrating, but it also tends to smooth out any deviations and make it look like people posting never go high or low, which I think is less useful than seeing a flatline and having an explanation of how it was achieved. I’ve thought, more than once, about posting a problem-solving thread where people can post NON-flatlines and discuss how they got things back under control, or maybe ask advice from others. On days when I’ve (for example) been high all day non-stop and am frustrated with diabetes, I do tend to steer clear of groups talking about really tight control, because those just make me more frustrated. Yet, posting just to vetn seems unproductive and pointless. So it would be nice to have somewhere to post where one could rant but also do some problem-solving and/or get feedback from others who may have had similar circumstances in the past.
I do think that posts about control on social media are extremely important. I went on the pump because of meeting people through social media, and achieved an A1c I didn’t think was possible because of people I’ve met through social media. Seeing others going through the same trials I am is so important, and something that most doctors and CDEs and other professionals can’t offer.
I think this is a great idea and I’d be more likely to follow and engage in this than I would be to offer never-ending atta-boys and high-fives in the flatline group
I appreciate so many things about TuD: learning from PWD who have many more years of experience under their belts than I; the “me, too” camaraderie; the latest D news; the sharing of information and techniques that help us get the most bang for our D-buck; the priceless support, endless hugs, and empathetic shoulders on which to cry; and so many other things that are far too numerous to count.
That being said, lately I am finding it all but impossible to stomach when a member adopts a know-it-all, holier-than-thou, read-what-isn’t-there-between-the-lines, separatist (Type X v. Type Y), rabble-rousing, name-calling, judgmental attitude (especially if they possess a poor knowledge base of the hard science and facts). I understand how difficult and draining managing this disease can be and how this can result in feelings of frustration and even anger. But I find it inappropriate and unacceptable when members voice their disagreement with something another member has posted in a manner that is snarky and passive-aggressive or even overtly hostile. I wish everyone, myself included, would always take a few seconds to re-read what they have written and imagine that they are saying it to a fellow member out loud, face-to-face, before they click “Reply”. We will not always agree with each other. But we can do so in a way that is tolerant and not hurtful.
This bothers me too. I for personal health reasons will most likely never try Afrezza but I do not begrudge those that have had success with it. I wish Afrezza topics would remain discussions by those that have a personal health interest in it. It does seem that these topic are always hijacked by persons that are more interested in the commercial success or failure of Afrezza. There are detractors on both sides of the issue.
Forgive me @Terry4 for taking this discussion slightly off topic. In a way it does speak to one of the points that I believe you are trying to make, to not derail topics for unwholesome personal reasons.
I don’t think we’ve wandered afield at all. I am pleased with the genuine expression and intelligent discussion. Thank you, @Jen, @Sam19, @Stemwinder_Gary, and @rgcainmd. Thank you to all that have stopped in to comment. You each bring valuable facets of the truth to light.
I am a recent newcomer to this group and have been “lurking” for a while. I am almost a 30 year Type 1.
I have an enquiring mind so when I see someone post something that is successful for their BG control I want to know why and how. Even if it ses crazy to me at the time.
I have been out of the diabetes education loop for a while. I started to have problems controlling blood sugars a year or so ago and convinced my GP to send me back to the diabetes educators to see if anything changed since the last time I went. Apart from them now teaching carb counting as mainstream, not much had changed. I think the program they have is excellent (not complaining about the health care professionals) but they are only teaching one way - one diabetes solution. Apart from getting more exercise and using Dex4 tablets to treat lows nothing really changed for me after that experience. Ok both were great but I was atill struggling a bit following the old rules.
When I found this group I found many different “Diabetes Solutions” which I truely appreciate. I have been sampling them - from Think Like a Pancreas to Dr. Bernstein. (Still waiting for surgar surfing to arrive…) trying things out and sweing what will work for me. I have heard members experiences with these books both good and bad which I think how I can related to my own personal Diabetes solution.
I have to say I found a ton of good ideas on this site and have seen much better control lately. I am not expecting an A1C in the 5’s (never knew that was possible for a Type 1 before I read paosts on this site) but solid mid 6.
One thing @Sam19 said on a post was something along the lines of - Try it. If you don’t like it you can always switch back to what you were doing before.
Here are some of the “crazy” ideas I tried:
Tried a CGM - loved it.
Cranked down the CGM alarms really tight so they go off before there is a problem. Great idea.
Tried Novolog instead of Humalog. Jury is still out on that one.
Tried prebolusing agressively. Works well.
Tried TAG - counting protien - still not exactly sure about it for me. Will try again.
The list goes on…
This week I started lower carb (Not the full Bernstien yet) found out like I think @Thas mentioned that he had a magic carb number that keeping at it or below makes control easier. This is working awesome for me right now, but if I have problems nothing stopping me from changing how I do things again…
All I can say is thanks for all the crazy outlandish ideas some of them just might work for me.
…and yes I usually correct at 120 if it is a flat arrow, not at bedtime, and if I am using a 0.5 unit insulin pen)
PS. Thanks @Jen for the endo recommendation. I have an appointment in January. Good way to start the new year.
I found myself teetering on the edge of that psychological cliff myself just today on the Dexcom website. Of course from a distance I’d just be saying “just hit submit, if you don’t like it you can not use it or take it out and shoot it or anywhere in between”. Sometimes I need to practice what I preach.
The original Flatliner group created under the old software had that ethic from the start. Danny made sure that in addition to a place to post those beautiful flatlines, there was also a place for roller coasters and rocky mountains. I’ve tried to weave in these type of posts from time to time.
You’re probably right that the opportunity to learn something is higher when a post shows the problem, posits a solution, and then enacts that solution. I think this is central to anyone trying to control BGs with diabetes. We never arrive at that perfect solution and then be able to rest on our laurels. The game never stops.
I like your idea and will try to post more with that in mind. Perhaps I’ll avoid the Flatliners Club altogether, in order to engage more people. The problem solving skill is, in fact, the most critical skill we have.
I see this as wise advice but also understand that we are all just humans, too. Even when I am trying to be considerate and conscious of my readers, I sometimes write things that appear hurtful to me at a later time. I like to think I learn from these events but I am a work in progress. I know have I have blind spots, I’m just not fully aware of them always, especially when my emotions get strong.
I also realize that the written word does not always convey what the writer intended. It could be because the writer’s craft is not refined or that s/he was just tired (or BG hypo or hyper!) when they wrote what they wrote. This communication format also allows flat-out jerks the anonymity to write hurtful things. I think the TuD administration does a comparatively good job when you consider the fevered-swamp environment of many public internet forums.
And when something really gets under my skin, I can practice patience and choose not to respond. At worst this allows the passage of time to calm me down and season my thoughts. Patience is definitely a work in progress for me!
I’m glad you’re here, Rose. As you can see, not many doctors elect to join our ranks and try to understand our unique and sometimes abrasive view of living with and treating diabetes. Your role as a parent gives you a perspective with values calibrated differently yet genuine in their own way.
I share your enthusiasm for some of the treatment improvements in the last few years. I’ve found some of the negativity and overdone skepticism hard to understand, too. Humans are complicated. Sometimes an outer layer of skepticism is used to protect an inner vulnerability.
I don’t get people at times but I find that most people in this environment get better with time. Ground breaking ideas were always received with human skepticism. People on horseback loved to poke fun at the trials of the first humans driving cars. It’s just the way were are. I remember back in the '80’s, an older coworker of mine thought that personal computers were “just a fad!”
Your willingness to try new treatments is a good thing for you. Your continued expression of success will likely overcome the reluctance of even the most extreme skeptic, given enough time.
