Are there ROGUE diabetics here?

I don’t know why this came to mind recently, but it has been in my brain for about a week, and now I have the courage to ask. First, I believe that this diabetes is MY disease, you have yours and I have mine. I tend to ask the doc first, and usually am not a rogue patient; meaning I follow their instructions but not necessarily all the time, in the exact manner they tell me. For those who don’t understand, a rogue is someone who doesn’t follow the conventional rules, but does what is best for them and/or others. So, in my mind, I do what is best for me, with the consultation of doc, CDE, nutritionalist, Health Coach, etc. I read all the material I can get, talk to people who I believe know what they are talking about in reference to diabetes health, and then most of the time follow the advice. But there are times, when between visits, I make it fit my life style. I have a nutritionalist who can’t see that life is not cut and dried or at least mine isn’t. So yea, sometimes, I will have a mini Milky Way and do double laps that next day…sometimes I will not exercise 7 days a week, sometimes I skip a whole week because I can. I will eat less carbs because I have 15 lbs more to loose and I will be at my lowest weight in 50 years…and that BMI is still too high. Sometimes I will eat more carbs, because I am hungry for food. But at the top of the list in my rule book is making the healthiest choices possible at all times in all situations FOR ME. So am I the only person (which I doubt) who taylors their diabetic treatment for their needs and how they feel and their health? Am I the ONLY one who looks at the disease as their own, and thus treats it as such?
AND YES, I know that my choices may no always be the healthiest, BUT THEY ARE MINE, Thoughts?

My guess is, by your definition of rogue as those who tailors their diabetic treatment to their needs, how they feel and their health, (rather than their doctor's or other white coats advice)....Who looks at their disease as their own ...the real question for TuD members would be, "Is there anyone who is NOT a "rogue diabetic?"

I went through a diabetes crisis several years ago. That crisis lasted about five years. My blood sugar numbers were out of control, not much time in target range with lots of highs and lows. What really got my attention was the sustained upward march of my A1c numbers from a low to mid 6% all the way up to 8.5%.

Over that period I became increasingly alarmed. I felt terrible because of the erratic blood glucose numbers and the insane variability. The quality of my life was seriously degraded. I felt vulnerable and out of control.

During this time I went through three endocrinologists. I live in a major metro area and my endos were well regarded in their field. I kept thinking that I just had to find the right practitioner and s/he would solve my problem. I even sought out an endo at a major well-respected teaching hospital. I went through a week-long diabetes “boot camp” to relearn about diabetes and good control practices. I never gave up and did put a lot of effort to monitoring my blood sugars, sticking my finger on average well over 10x per day.

During this time I saw a stream of medical professionals, including endocrinologists, certified diabetes educators, nurses, dietitians, and nurse practitioners. I got so discouraged because, even with all their help and advice, I could rein in the blood sugar chaos that sucked the energy out of my life.

During that period I started to read online about diabetes research studies and also connect with other people with diabetes. It was then that the concept of using a carb-limited diet first rose up on my horizon. It took me a while to seriously consider using low-carb to turn my situation around; no one like to change the way they eat!

After a year or two of reading about carb limited diets and diabetes (not too quick on the uptake!), I decided to give it a try. The effect on my blood glucose control was dramatic and immediate. I haven’t looked back.

Once I regained control of my blood sugar and diabetes in general, I looked back at the ineffective role that all those health professionals played while I desperately sought to regain control. Anger filled me. How could they be so remiss in their professional duties to never once raise the possibility that limiting carbs might help me? What cause then to do this? Was it the professional ignorance of low carb diets and diabetes? Or was it worse than that? Are the practicing physicians and other medical professionals being misled by their professional associations and a massive “group-think” dysfunction?

I’ve gotten over my anger now. I understand that doctors and others operate in a very difficult practicing environment. Their time is limited and fragmented. They must necessarily see so many patients, my case was just a momentary blur in their day.

So, to get to your question. Yes, I consider myself a rogue patient. I no longer place my doctors and other medical professional up on any kind of pedestal. They are human beings just like me. I realized that I have over 200,000 hours of experience treating my diabetes. None of the medical professionals had nowhere near that time observing blood glucose control. In day to day blood glucose management, I concluded, I was by far and away an expert well beyond the realm of experience of my doctors. True, they did have a depth of knowledge in other areas of medicine and I do respect that. I will not, however, ever take aback seat to them when it comes to managing day to day blood sugar.

I’m in a much better place now, health-wise. My A1c is lower, my blood glucose variability is a faction of what it used to be. The number of hypo episodes are few. Since my blood glucose trace on my CGM is mostly sideways, I have very few of the more dangerous sharply diving traces that characterized my former diabetes life.

Actually, one could color me as rogue, but I also consider myself an empowered patient. I don’t blindly follow medical recommendations unless they make sense. I also know that the field of blood glucose control knowledge well exceeds the medical professional community. Good question!

Amen. Eventually, the time comes for everyone where you take control.

The weird thing is that there are few diseases, other than maybe lung cancer, where the person with the disease is literally blamed not only for having it, but for anything bad that happens while trying to manage it. Most other diseases, people get a "good job!" from people just for surviving from year to year, regardless of how diligent they are about managing it. But not us, and I just think that's pretty warped.

Anyway, you've hit the nail on the head, and I think most medical professionals are highly reluctant to delve into it. This is a REALLY tough disease to manage. It's complicated, it involves a lot of math, a lot of uncertainty, and a truckload of pure frustration, especially when you're doing the "right" things and it's still not going well. Each of has different personalities - for some people the discipline and rigidity required to be a "perfect diabetic" comes really easily, for some it doesn't come at all and they are in denial, but most of us are somewhere in the middle and try to lead a balanced life. Our docs want us to be perfect, our families usually don't "get it", and we just want to be able to lead a full life, reasonably healthy, yet happy. And we all do that in our own ways, and making our own choices about what we can and can't tolerate.

With that said, I have moments of beating myself up for some "food sin" or another, or for forgetting to turn my basal down before I went hiking, or for burdening my husband by making him eat lower-carb stuff at home. We can find all kinds of things to beat ourselves up about, but the reality is that a very important function in our body is broken that most people take completely for granted, and we are just doing the best we can to simulate that process with some kind of accuracy. Hopefully most days it works pretty well, sometimes it doesn't, but we just keep getting back on the horse and ride. I applaud that you own your diabetes!

I agree, maybe I should have asked “who isn’t” but didn’t want to scare away people who might be newbies and think they have to be rogue…but I would think there are more of us who have learned to write our own ticket than those who follow the white coat piper.

WOW! How true that is, angivan, we all try to "please" someone in this journey, and then comes the time we realize that it is us and only us we have to please or prove ourselves to. My mother died of lung cancer about 9 years ago, even I blamed her for her continued smoking....what was I thinking, smoking didn't make the cancer cell, it was only a help to create it. I didn't get diabetes because I was fat, or didn't exercise or whatever, I got it because it was within my body and my pancreas for whatever reason doesn't function like others. My docs have had about a year in minutes of training, and yes with the mounting number of diabetics they see, and the need to make it okay and better in a minimal amount of time, I can see why they just shove me out the door with a pat on the head. NOT right, but the way it is, even the endo's if you are lucky enough to see one. So in the end we get all the information we can, and then treat ourselves as best we can. Good for us, that's why sites like this one, and other CREDIBLE site are so important for giving us vital information and support. Thank you

Terry, please take this in the manner in which I am writing it ----- can I kiss you? hug you? You have described and stated exactly what I am trying to tell others. Our docs, no matter where they studied, no matter how many degrees they have after their names are NOT the true experts on OUR diabetes, WE are! Even the diabetic doc (one who was diabetic himself) knew my diabetes as well as I do. Thank you, and I pray you aren't offended by my asking .... but you are one in a million!

I hire a medical team to support me in making health decision, it's just that simple.

They work for me.

I've fired many over the years that failed to grasp that simple concept.

If that fits your label "Rouge", then yes.

I would not be here today if I wasn't.

sdkate - Thank you for the compliments! As you know from my posts, I sometimes go on at length and I’ve retold versions of my story many times. I always fear readers seeing my words as redundant. I apologize if I am overly-repetitve.

Your topic resonated with me and I have strong feelings about this issue. It took me 28 years to finally fully embrace my diabetes. It was only when I faced a daunting diabetes complication diagnosis, looking down the maw of bottomless misery and a painful demise, did I finally take control. I hope that some of the younger readers, with fewer years of D, can benefit from lessons that I took a long time to learn.

And I still idealistically hope that our medical comrades-in-arms will start to get it and pragmatically help us live a life relatively unburdened with diabetes. Don’t blame us and evade responsibility behind the charge of non-compliance.

Terry. You have hit the nail on the head…my sentiments exactly…and you are better for it!

this is the VERY best conversation on the entire tuD site HUZZAH!

Thank-you Sandy and sdkate. It's always nice to get positive feedback.

I hardly ever get advice from my doctor. I ran my basal rate scheme (oscillating between .8U/ hour and .775U/ hour, to "fake" a .7875U/ hour worked!) by my doc and he said "it makes sense" but the other time the doc said, "turn down your basal" it took their office two days to tell me and I'd already done it and perceived that it worked ok. The only reason I go to the doc is for RXs and to get patted on the head.

Thirded :-)

By the description in the OP, I'd say pretty much every regular participant here is "rogue", and the majority of all members too.

Me? "Rogue" is insufficient to describe my treatment habits. Basically, I pretty much make all my treatment decisions on my own -- food, insulin, etc. I'm constantly tweaking to refine and get closer and closer to hyper-tight control (my a1c is down to 5.8 now, and that's with an In-n-Out Double Double once a week for lunch as a treat!)

My endo and PCP are thrilled with me, as I've proven my ability and safety managing this myself. Heck, I regularly send them journal articles I find and read, with their gratitude.

Bottom line: A doctor, no matter what specialty, has thousands of patients in their practice. The see dozens each week. They simply do not have the time and bandwidth to give each diabetic the attention necessary to control this thing with precision. Only you can do that.

As for CDE and nutritionist, not part of my "team" any more. Not useful for me. That's not to say they're not useful for many, but when I'm teaching them things with every visit, and they're not really teaching me anything, one starts to ask what I -- and my insurance company -- are paying for.

Yeah, the "smile and nod" posture is a winner.

I wonder how long it would have taken for one of your doctors to suggest the oscillating basal technique to you. These kind of ideas tend to come to people that live with diabetes every moment of every day without end.

What do I have to write to get a smootch?

The weird thing is that there are few diseases, other than maybe lung cancer, where the person with the disease is literally blamed not only for having it, but for anything bad that happens while trying to manage it. Most other diseases, people get a "good job!" from people just for surviving from year to year, regardless of how diligent they are about managing it. But not us, and I just think that's pretty warped.

It's the Diabetes Burden. A nasty affair to begin with, and then we get socially pummeled on a regular basis for it.

While I don't agree with the reason, it's understandable. Like smoking and lung cancer, there's a "sin" -- gluttony -- associated with diabetes. Never mind whether it's accurate or not... that's the public perception.

What's worse, there's a sliver of truth to it. Obesity is a factor, among many, that can contribute to developing T2 diabetes. Of course, there are other stronger factors (like genetics), but it's easy to see a fat diabetic and focus on what you see.

Durn good thingy that we have the DOC, eh?

for some people the discipline and rigidity required to be a "perfect diabetic" comes really easily

Wanted to add something about this... Discipline and rigidity don't necessarily positively correlate. In fact, in my experience managing diabetes discipline paradoxically gives me much more flexibility, rather than rigid schedules, protocols, etc. etc.

When I think "rigid" and/or "inflexible" w.r.t. D I think of oral meds requiring eating at particular times, fixed-dosing of insulin or sliding-scale (treatment modalities from the Cambrian Period, but still in use!) proscribing food choices, etc. etc.

So, for me, discipline in managing this disease is actually liberating.

Love this discussion. You are not the only you know from all the responses already. I am a rogue diabetic, and also a charlatan (I pretend to be a "normal"). I don't eat many Milky Way bars but if I really wanted one I'd double tap, too. I don't follow ANY rules except the speed limit ones - and even that one is broken every now and again. Thanks for the smile today!