AADE 2015 - Does the DOC Benefit or Harm Patients?

Community Share Your Stories
22

I understand, Jenny. I do remember a thrill and a chill when I first was reading you and there were the details I needed to combat the idiotic guidelines I was given. The more data there is to back up lo-carb eating, the better off we will all be.

And yes, I remember struggling with things like ratios when all I wanted to know was how many carbs/day will help me live longer, for instance. Your work is never wasted, whenever the new edition happens…

Forgive my ignorance—with all my crippling joint problems, back problems aren’t something I have had to cope with—would a stand-up desk help?..Wishing you well…Judith in Portland

23

Those who participate vocally (and I count myself in this group) in the DOC are a self-selected bunch that has heavy representation from the best-educated and best-controlled diabetics. So while there is obviously an “association” it’s not obvious to me which is the cause and which is the effect.

I’m sure there’s at least a little positive feedback loop running there for those who are already best-controlled to do even better.

I also scratch my head and wonder if those with less-stellar control and less-stellar education perhaps are not benefiting as much as they could from DOC, because the level-of-control standards among the self-selected are often being raised so high. Do we need the best of the best to do better, or do we need to raise everyone else up?

3 Likes
24

Judith,

I am using a standing desk, and it helps some but my neck discs are gone too and it is the neck that gives me the most trouble after a few hours of work.

Tim,

The biggest problem I see, especially in the T2 population, is that the societal shaming (you caused your diabetes by being a lazy glutton) keeps people from wanting to think about their diabetes and works against them seeking out others with the same condition and networking with them.

That is why it is so important to spread understanding that the “gluttony” in many cases is of physiological, not moral, origin. Freed of that shame people are much more likely to network and seek help.

The other issue is the horde of sleazy doctors who peddle miracle cures for Type 2. Most recently diagnosed people I encounter turn to the miracle supplements rather than seeking out the DOC.

2 Likes
25

I agree there’s self-selection bias @Tim12! I like the idea of figuring out simple solutions that could perhaps translate across control levels. Instead of hitting a number or target, perhaps a goal like “do better” could be more practical. There are many examples we’ve seen of folks who, for one reason or another, report that diabetes is hard. Their doctor is not supportive and tells them they need to improve but doesn’t tell them how, family worry but maybe they nag too, instead of supporting. Insurance companies, both private payer and governmental agencies raise their eyebrows at the challenged and then screw them but limiting their supplies and support. People who can figure out a different path might stumble on a pathway that might be called success. But, as we are not doctors, we can only offer limited help and certainly can’t prescribe the tools that many people with challenges report having trouble obtaining.

The two things I’ve conceived of that, very broadly, can change the medical paradigm about diabetes are 1) PWD should work towards more normal goals, no limits. More normal for one person might be different than the other but the target should be normal. Of course we won’t always hit it but we should conceive of diabetes “batting averages” (maybe time in range? But the range could change with practice and improvement…) 2) testing our blood sugar should be civil right. Testing our blood sugar is critical to our civil existence and restricting our ability to know our blood sugar severely limits this civil right and can completely interfere with our pursuit of happiness. By changing these two elements in our diabetes worldview, and that of medical providers and insurance agencies, we can change the way people with diabetes feel about themselves and “raise everyone else up…”

3 Likes
26

Tim, you raise something that I observe here. I participate in the TuD Flatliner’s Club. We post not only good CGM traces but also some pretty awful ones, too. The idea is to teach and hopefully inspire each other to do better.

The activity level in this group is low. And I think one of the main reasons is that the average visitor is intimidated by some of the great CGM lines displayed and they tell themselves that they’ll never be able to do that. Every once in a while a new person comes along and adopts some of the tactics discussed (diet, exercise, insulin dosing techniques) and surprises themselves with much better CGM traces. But that doesn’t happen too often. @Ahnalira is the last success story that inspires me!

I’m able to do fairly well with my blood sugar numbers but I often hesitate to post some great lines because I sense that while I might inspire the occasional TuD member, I fear that I totally take the wind out of the sails of many. Success is a double-edged sword.

I go round and round with this and usually end up with thought that there’s nothing wrong with celebrating and displaying success, despite it’s darker side. But I still remain conflicted.

1 Like
27

And I continue to do very well :smiley:

I think the benefit of DOC (I’m assuming this means Diabetic Online Community) depends on what a person comes to and uses the community for. I am a strong proponent of the statement: “Energy follows focus.” For anyone to benefit from anything, they have to hold a fundamental attitude that they can benefit (aka improve their experience) as well as a desire to benefit that is greater than the habits and beliefs that diminish positive results…

For example, when I discovered my adrenals were failing I had to start eating animal proteins to provide adequate nutrition for healing…something I hadn’t done for many, many years. My desire to heal had to be stronger than my beliefs and habits. When I decided to consider reducing carb quality and carb amounts in my diet, I had to find ways to support me through my anxiety about low lows (The CGM did that for me :wink: ) This forum was instrumental in helping me with the second example…and I used other online resources to help with the first.

It’s all about intention.

Just my $.02 to spend as you will.

1 Like
28

I am a fan of the DOC because I learned when I found the on line community I also found a band of support and enjoyed learning how others managed their diabetes. I became very quickly aware that Doctors and/or their Nurses, CDEs, Hospitals, and Clinics were no help to diabetics in the DOC. And agencies that offer support, information, were and still are constantly criticized and discredited.

Because I am ever curious and this gig seemed like a repeat I did some sleuthing and found that this idea has been done before: http://www.medicine20congress.com/ocs/index.php/med/med2014/paper/view/2549 and the original survey was promoted right here and DHF benefited from it: DOC and Health Outcomes Research - #50 by Michelle28

And for my own DOC experience I want to say something about what AR said here: [quote=“acidrock23, post:21, topic:47190”]I haven’t seen any posts suggesting the DOC actually harms patients. I suppose that here and there you see people saying “don’t listen to acidrock23, he is full of crap. You should only listen to my doctor, because they know everything…” but I don’t see that too much either…[/quote]I have seen posts in the DOC that could in fact be harmful. When a new mom or dad comes to the DOC scared and confused and the first advice is to put the kid on LCHF (yes, this is common advice!!) - that can be harmful. When a young pregnant gal comes to the DOC scared and confused and the first advice is for her to begin LCHF (yes, this is common advice!!) - that can be harmful. I see a lot of advice given that would in no way suit my diabetes management and when it is questioned then the response is that “we need to tell newbies how to do it”. And when a person comes along with BG issues and such then the common advice nowadays is “you should get a Pump” or “you need to get a CGMS”

Well, okay - none of that advice is probably ‘hamful’ but what we should really do is direct all diabetics to resources, and NEVER tell anyone what diet, how to dose, what kind of meds to use, when to use them…and so on. And I don’t see telling newbies or anyone that the healthcare providers and systems are useless and don’t know anything as “harmful” but it sure is not helpful. I have been ever lucky I guess. My current provider is a badass ARNP who is able to see after all of my shenanigans. There are good providers out there, I have been able to find solid doctoring in all the places I’ve lived.

I love the DOC because I have made some amazing friends in my connections. Most of the folks I’ve ‘connected’ with have similar history and that may be why we enjoy and understand each other. I make my way to meet in person if/when possible and we learn all about each other and become new branches on our family trees. Our conversation is NOT about diabetes or diet, or how much insulin I used today, or how much I weigh, or what my bg average is. LOL

In my DOC forum experiences I did find one (my friend Richard talked about this one some time ago) where I was kindly invited to leave because I had an apple as my avatar, and I was asked to change it because it was considered harmful. So I said “What?? I’ve never heard of an apple killing anyone!” And I was told that an apple can kill a diabetic and maybe this wasn’t a good forum for me. So BuhBye and good riddance.

So yay for surveys and the results - even when they are limited and the results take some time to analyze and report back to the surveyees. I am glad to learn this one found that involvement in the DOC is associated with better glycemic control, self-care behavior and quality of life.

2 Likes
29

Thanks especially 4 the prompt reply

30

Great to hear @Jenny! I think there’s a lot to miss out on if you’re not with the #DOC, and I get a lot out of sharing and learning from each other

32

Nice blog @franksita!

33

@franksita, well done on your blog post! The internet and the DOC have provided meaningful connections to those of us that live with diabetes. It’s great to read that your participation online has helped you to deal with diabetes, especially the mind-game that is so important.