I am consistently impressed with the efforts made by the TuD community as a whole in terms of taking this beast seriously and working hard to maintain control of their health. There is no question that it is hard even for the most compliant of us.
When I look at the diabetics I know at work, family, school, and everywhere I go in the "real world" I find that I am an island of control in a sea of folks significantly out of control. I am amazed that many of those people know the details well. They know the underlying metabolic functions and what can be done to address them. They know the complications and the statistics. Yet they persist in having 5 slices of pizza, or saying "I'll have the diet soda, but I can't give up my evening ice cream or my pasta for lunch."
There is a broad spectrum of control of course. Not everyone is going to be in the "5" or even the "6" club (referring to groups on TuD based on A1c #s), but everyone here is here because they care and are trying. I seem to keep finding a lack of that effort and dedication in the people I know and meet and that freaks me out a bit. How do you not take this beast seriously.
So my question to you all (finally!) is: do you know/meet people in the real world that take their diabetes seriously and work hard at controlling it, or do you find those people few and far between?
I do not in any way mean to come off condescending on this issue. Getting my own diet and bg under control has been a monumental task (and remains a day to day challenge). I am simply astounded by the situations I keep finding people in and am sincerely concerned by it.
I think you are absolutely right, Chris, that people who are a part of the DOC (diabetic online community) have a higher overall rate of good management. As for people in real life: I started a Type 1 Women's Group and met a lot of women whose control, of course, varied, but who were all pretty involved and working at managing as best they could. I think anyone who reaches out to others, whether in the DOC or in a group, does better than people who manage in isolation with just their doctor to assist. I do say, and I hope nobody takes this the wrong way, that Type 1's overall have better care because we are kind of forced into doing so...we have no choice. There are, of course Type 2's (including some of my favorite people on TuD!) who take excellent care of their D, but in general, the Type 2's I know in real life are on outdated treatment regimens from their doctor, don't count carbs, and have less than optimal control. To prevent anyone from taking this personally: I've shared on here before that I was initially misdiagnosed as Type 2. I was in the process of retiring and moving to a third world country, so it was a hectic time. I was put on several oral meds, told I didn't need to change anything about my diet because "I ate pretty healthy" - my own statement as I was a vegetarian and ate no sugar. But I ate lots of carbs in pasta, rice, cereal, etc. Despite this, I tested a couple times a day and my numbers were mostly in range for 15 months until they started to rise and I was rediagnosed as Type 1. That was when my true learning began.
This is just my opinion (as a Type 1 with Type 2's in my family and in my workplace) but I think the medical community is partly to blame. I know that their patient loads are heavy in most cases...it takes 3 months lead time to get an appointment with my endo and he is no longer accepting new adult patients, only juveniles. But I think the docs *downplay* the diagnosis with many Type 2s. This has been the case with the Type 2s in my life. Just *cut back*, get a little exercise and take this pill and you'll be fine. To many people, that translates to ok I'll skip the dessert and eat what I want for dinner.
Many are initially told their blood glucose level is "elevated". No discussion of numbers or what it means or how serious it is. They're told to cut back on their eating and sent to a dietician who tells them that they should eat 60g carb per meal plus 15g carb snacks in between. They're told they only need to test once or twice a day but, unless they're on insulin, they can't do anything about high numbers when they do test so it's easy to see how one could become frustrated to the point of feeling why bother.
In some parts of the country there are few resources available to PWD of either type...no support groups, no training, and few endos. I live in the largest city in my state and we don't have a JDRF or ADA local chapter here.
It's a sad state of affairs to me. I know how important research is and want a cure one day as much as anyone but part of me thinks that it's ridiculous that so much money goes into research when the care for those already diagnosed is subpar in many places.
I absolutely agree with every word you said, smileandnod. I think doctors are overwhelmed by the increase in Type 2 cases, and they set very minimal standards for their patients. I don't know if this is changing with younger people, but the middle aged type 2's I know are still very much into "I'm doing what the doctor said" I was at a friend's house for Thanksgiving a year ago and her type 2 husband went low because he was waiting to eat. He was rude/borderline abusive to me (we didn't have a good relationship to begin with). He was on NPH (prescribed by Kaiser, who I think often gives you the cheapest treatment if you don't advocate) NPH is known for lows if you don't eat on a rigid schedule. He has made no diet changes so I'm sure after he ate the stuffing, the yams and the pie(s) he was through the roof high. I believe he was only told to check his fasting. (On insulin!). He and his wife think I "obsess" about my diabetes. Did I mention she is an RN? It's very sad and probably not atypical.
I agree that all the money should not go to research but some to services. I'm shocked you don't have a JDRF in a major city!
You've got it right about Kaiser.
I agree that a lot of doctors simply don't know what to make of "outliers". I think that it's a very good observation that a lot of their patients may not be "pushing the envelope" although I would be hesitant to describe them as "non-compliant" since many of them *are* complying with their doctors' (flawed? I can't prove this but it makes sense to me...) instructions.
I also wanted to note that I think that your "10-20 times per day" should be the rule! I am always oriented to say "well, maybe 12-14+" but if I have a bad day, I'm going to test every hour or so until I get things hammered out? It's sort of odd to conceive of a wide range but it makes sense but then, were we not "protected" by the anonymity of the internet, open to attack by actuaries looking to trim strips.
I'm thinking that compliance with a doctor's low expectations is an insidious form of care since it permits a patient to continue to compromise his/her health. It lets the doctor and the patient evade responsibility. It takes two to tango, but this is a dangerous dance where the patient pays dearly with long term debilitating complications.
I view "compliance" as a reasonable effort expended toward normal blood sugar numbers. Because of the variance of everyone's biological makeup, the same effort is not always rewarded with the same success. I see non-compliance in this context as diabetics who no longer try. They've essentially given up and take a fatalist's view of their health.
Before I was diagnosed with Type 1 diabetes in 1995, I knew several people with Type 1 who were nothing short of suicidal in terms of their care, and their lives were living hell imo. I was horrified. When I was diagnosed, I was determined that I would not be like them. Because I am part of the DOC and also a Type 1 group, I see lots of people who take amazing care of themselves. No, it sure is not easy. I also have seen some scary stuff. I have a close friend who now has Type 2, diagnosed probably 15 years after we became friends, and he takes amazingly good care of himself. It was a terrible emotional blow to him, but he is a role model. I just think that it takes enormous daily dedication to manage diabetes.
I am lucky to have an older relative who is better than I am about his dietary choices and exercise. He eats mostly salads and protein, and tries to walk as much as he can.
He's been a real inspiration to me.
T2 is unfortunately a disease that can be ignored especially in the beginning. The recommended course of treatment where oral meds rule sets a lot of people up for failure. I was one of those failures. You are given a handful of pills and told to swallow these. And Oh yeah you might want to exercise and watch what you eat. Almost every T2 I've met starts with good intentions but soon fall into the trap because maybe their will power was not strong enough or they just didn't have a clue. Then the frustrations set in and it's easy to fall into indifference.
That's the reason that the DOC does much better than the general public. Here we get support and encouragement and we get knowledge. Being on this site has helped me greatly. I think that the best thing I can do for a fellow T2 is to get them involved on line. Maybe they will learn to take control of their care and not be stagnant in their treatment.
I agree with your solution, but I think the cause is far more sinister. I think doctors in the U.S. are UTTERLY INCOMPETENT when it comes to diagnosing, treating and educating diabetics -- with T2, particularly.
I can think of no valid excuse for it. It's a witches brew of greed and laziness. Greed on the part of HMO execs, insurance company execs and drug companies and sheer intellectual laziness and greed on the part of doctors, especially those doctors associated with HMO's who increase their personal profit by providing LESS care per patient.
I think it's bordering on criminal how ALL of these people lie to newly diagnosed T2 diabetics. Why do they do it? To save money on diagnostic tests and doctor's visits? To save money on test strips, CGM's and supplies? To sell more pills? To maintain a higher patient count than they can competently serve? It wouldn't be any more criminal than if they got together in a secret room, had a meeting, and said, "Here, how can we save money on treating T2's now, and hope that many of them will die or move on before the really bad complications show up?"
Every T2 should be getting taught to test at least six times per day, to reduce immediately to a moderate carb diet -- and if necessary, to a low carb diet. Every T2 should be getting labs and A1C tested at least quarterly and their meter downloaded and reviewed more frequently, especially at first -- no less often than once per month.
If they're not maintaining normal or near-normal numbers on metformin-diet-exercise then they should IMMEDIATELY be started on insulin therapy. They should work very closely with a knowledgable CDE to figure out their basal, bolus and correction factor just as soon as they go on insulin. The so-called sliding scale needs to be buried once and for all -- it leaves way too many diabetics spiking after meals with no way to treat their highs. Anyone who has a widely variable basal should be put on a pump right away. Anyone who needs to ride herd on spikes and lows that aren't responding well and need diagnosing should be put on a CGM right away.
This whole business of letting people drift around from 180 to 250+ FOR YEARS is criminal patient abuse.
If I try to talk to one of these friends, even just ask them simple questions like, "Do you know what your insulin:carb ratio is?" they start right in with the whole defensive, "I don't need to know about that" or "My doctor told me I just have to take this pill". Sure, they're waking up at 250, spiking to 350 and have a double-digit A1C every year (!!!) but no one in the so-called medical profession is telling them the truth. No one.
Excellent and painfully true post, Jean. I would add also there is the whole paradigm built into western culture of "being good" vs "cheating". Mature adults ping back and forth between these poles - I call it the "twinkie granola syndrome". Nutritionists tell them "you can eat whatever you want" and then doctors feed into this by chastizing them when they "cheat" as if they are naughty children, rather then helping them problem solve good alternatives.