I agree with brboyer that we only think of it as "rogue" because we've been brainwashed to think doctors are gods whose dictates we have to follow rather than we are asking them to provide a service we pay them for...the same as a hairdresser or lawyer or mechanic. We are there to get professional assistance, not follow rules.
To me "rogue" are those doctors who are willing to listen to their patients, to say "how can I help?", to admit when they don't know something and to encourage their patients to be knowledgeable and proactive.
I'm curious whether anyone who has replied so far was diagnosed as a kid. I was diagnosed as a kid and was taught from the beginning that I was the one who had to manage diabetes on a daily basis - adjusting diet, doses, exercise, whatever to control my blood sugar. The doctors were there to oversee things and make suggestions, but ultimately I had to do what was best for me. It seems odd to me that anyone with diabetes would rely on a doctor to make their decisions - wouldn't we all have to live in hospitals if we needed to check every decision with a doctor?! But is this what people diagnosed as adults are taught? Or maybe I was just really lucky at the doctors I had as a kid and teenager...?
I think there might've been somebody else online who said they'd done it so I'm not the only one. It is a bit of chore to put it all in and I've ironed out some areas (after work!) but backing off on the .8U but I don't see a doctor suggesting that. They like to set the rate and leave it up to you to figure out how to use it.
I was 16, not quite a kid but not really grown up wither. I was pretty much tought that I had to figure it out although my prescribed "plan" was to eat this much at that time every day and balance it out. I went to college and, uh, partied a lot and figured out that if my BG was high, the solution wasn't to change the plan, it was to take more insulin. There's no plan that involves keggers or Jack Daniels at 2:00 AM while you're already trashed out of your gourd but, if you use your meter, you can figure "woah, I'd better have some insulin to wash down the dregs of the keg" or cover the run to Steak and Shake or whatever. I sort of got on MDI, maybe before people were doing that, or perhaps before I was old enough to learn about it. Then, like 20-30 or 33 or something like that, I went to the doctor maybe 3-4 times, got Rx's refilled and that was it, until the doctor fired me. I went in and explained what I was doing which was sort of MDI guesswork, or RogueMDI, and, since my A1C was 5.8, the doc, a GP said "oh, you must know what you're doing". I continued winging it for a couple of years until I got a pump and was then able to figure everything out.
I wear my 'Rougnes' proudly. LOL Yeah I am the ultimate rouge diabetic. Reformed a bit now but still I never a rule I did not want to break, it is simply my nature...rick
I don't believe "Rogue" is a proper term, I like to think of myself as a "knowledgeable Patient," instead. Yes, I visit my doctor quarterly and do blood tests. Yes, I use my Medtronic Rep as needed. Yes, I use my pump and CGM as much and as effectively as I can. But "I" am the expert in MY diabetes. I consult with various "professionals" for their opinions and advice, but when it comes to the actual result, I'm the one dealing with needles in my skin every day. I'm the one who has to count carbs in every meal, change the lancets, and look in the mirror.
Now, did I this past year, realize that the medications I was on would not be allowed for a health pregnancy. SO I confirmed my numbers were good with lab tests, and then adjusted my diet while I went off of them without my doctor's knowledge - Yes. Did I consult my pharmacist beforehand? - Yes. But, I also knew that when I had blood work done, I would be following whatever those numbers indicated - good (stay off the drugs) or bad (go back on them).
The DOC is a prime example of how information moves throughout our society. Each of us does our own thing, shares it with the group, and then each person can figure out for themselves what "best" practices work for them.
I have found myself a rogue because the goals I set for myself are not the recommended ones, they're much stricter. I've had discussions with my doctor and, more recently, with a nutritionist who I don't think has read a thing since she studied for her degree. I know what works for me because I've lived with it for 8 years now. My last A1C was 4.9. All my doctor could say was, "I don't think you're diabetic anymore." The nutritionist said, "You need to eat more carb, people can't live on carb that low." (Despite the fact I've done it for years.)
It's my observation that T2s who have followed traditional advice are having problems, and I feel very badly for them. So I don't regret being a rogue.
I agree, Dave. The discipline and rigidity I practiced for 6 months are what has given me the freedom to live an easier life now. I KNOW what the effects of activities and foods are, and that knowledge gives freedom and power. I do periodically go back to a rigid routine for a week at a time to make sure something hasn't shifted. This is not a static disease.
RIGHT ON! I have a CDE that has a son type I; and I get more useful information and help from her. SHE's the one who told the doc, I was begging for Lantus...and I got it! She is the one who asks me what I want and how do I want to do it
I was 18 so not a kid really but certainly not an adult. I got the same type of teaching, it was a long time ago though. I was sent home with diet instruction, testing instruction (this was urine testing - it was a few years before meters were available), dosing instruction, and the list of what/when/how/and why and then sent out the door to get on with living. Like Mike, I was young and invincible so I just continued doing my thing. I have always done my own thing, diabetes and otherwise. I was and still am really lucky in my doctor needs. After all the decades of diabetes I remain a kid and remain well and happy and my care providers don't try to change me or my management choices. Being rogue isn't a bad term in my opinion. I sometimes think rebel fits some of us - LOL!
If you are NOT a rogue, I would think that you are not managing your diabetes well. I have done this 31 years and do make all medical considerations that doctors, CDE's, and dieticians, and pharmacists recommend. I also consult with pump reps and cgm reps. But, the bottom line is that there is no "typical" type 1. The ABSOLUTE TRUTH is that we are all individuals and absolutely everything effects us differently. Let's face it, nobody is a robot. Additionally, I can get up and do the same thing everyday and still find great fluctuations in my numbers. By the way, I wanted to get a Nissan Rogue because I think of myself in this light most of the time!! Just love the fact that you posted this!! I totally agree with Zoe's post about who on TuD is not rogue??? Lmao.
PS.....I am married to a CDE. I break rules all the time and he lectures me, but all in all he tells me that it is my diabetes and I am the one who has to live with it. Live and learn. If he tries to give me advice, he has learned after 20 years of marriage I WON'T follow it anyway!!
The big rule that's hard to work around, even online, is the notion of "talk to your doctor/ CDE/ health care team. I've had like 2x CDE appointments since 1984 and don't usually take much advice from doctors. The GP I ran things through before I got my pump was always urging me to get a pump, try Novolog/ Levemir, whatever and, when I did, kicked me to an endo. She and the SalesNurse did a great job getting me in the ballpark and learning how to shake it down (e.g. the morning basal bump...) but since then, I just take care of my own business. It's always sort of awkward online, e.g. in the local group I hang out with on FB, as ****everything**** is qualified with "talk to your doctor to see what to do" whereas I am very much inclined to roll up my sleeves and do some tinkering.
Same… I manage my own business 100% of the time. Essentially the only reason I even go to the doctor is to stay in their good graces because they have to sign me off for my physical every year for my professional license…
