i know and have seen that the term/word “ignorant” is freely applied to “normals, doctors” and others
who arent us. but does this not go both ways also? i have had been told by other ds that things i have gone through in almost 40 yrs of type 1 could not be possible. that living with high a1cs and bg i must surely have complications by now . according to the “science” guys of course. im sorry i was nt around when the real everyday life was replaced by the written word. and a study. and a report saying i must not have a leg by now. so i must be a story teller.
though a long time diabetic it really is only recently that i have been brought into the new century. no basil bolus routine. no lantus and fast acting novolog. and no counting carbs. when i finally returned to the “big city” i had a a1c of 11. but im feeling much better now! lol
needless to say i was offended by this. should i have been? should i change my life story because i dont fit the last study? who should i believe. myself or the people giving me the report word by word? normal folks are not the only ones who have a high degree of ignorance.
Well… If one lives for many, many years, with excruciatingly high blood sugars and doesn’t develop any complications… I wouldn’t say that that negates any study… or somehow makes it okay to walk around with high blood sugars… But more of a “luck” thing… As in… they got lucky they had good genes. Some people get “unlucky” with bad genes, too, and develop complications at much, much lower A1Cs… How Diabetes affects each and every one of us is a luck of the draw, sometimes. I wouldn’t keep pushing my luck, though. As we age, bodies and systems do break down. We don’t leave this life unscathed.
but thats the rub. isnt it. im not sure why folks jump to the conclusion that myself and others think its ok to “walk” around with high bg. dx at 12 in the time before meters contributed to a lot of the time. living outside the main stream didnt help either.
sigh i guess thats whats annoys me. i didnt say anywhere i was still pushing my luck. i said i dont fit the "mold"
which brings begs another question. its just "luck? well that would really suck! because if it is “luck” then doing all the right things doesnt mean anything?
i understand d being different for everyone that was kind of the point. just because something is supposed to happen because of this or that does not make it true for all. i had the pictures lectures and pamphlets burned into my brain from a young age.
i meet regularly for coffee with 8-10 other type 1 s from this site here and a well known blogger. none of us have complications. and we all are 20 plus yrs. seriously thats a lot of good genes floating around. there are way to many “old” type 1 s posting and blogging who dont have the control wanted by all for me to not question the studies and reports. i understand high bg being the focus, but what else is there thats causing the problem. or not causing it.
I didn’t say that YOU thought it was okay… or that YOU were pushing your luck.
I was merely expressing my own VIEW on things. That people, in general, shouldn’t rest on their laurels because they haven’t had complications for a billion years with really high blood sugars, for whatever reasons they had them…
Diabetes is Diabetes for a REASON.
There are also studies of why some people haven’t developed complications… And believe me… there aren’t TONS of people walking around with high blood sugars, and no complications. And it is not that something else is causing problems, it is that something else is helping prevent and protect the body from having problems… because you would likely have them without that. Sometimes it’s genetics, and sometimes it’s some particular hormones. Someone posted a link to it once, in here… And some of our members are even part of the said studies. I think Joslin was working on them.
We do the best we can, and that is all we can do. Would you rather be the person with a 5% A1C who already has retinopathy? Or heart problems? Because those exist, too…
You don’t fit the mold, good for you. Make the most of it.
So Deanusa, why haven’t you developed complications so I can go buy some? 
One thing not often realized, is that before 25 or 30 years ago when home bg testing became widely available, the level of control anyone had was not very determineable at all. I mean, when I was first diagnosed, there was no A1C, and the only way to get a bg number was to go to the hospital to get blood drawn and I could find out the bg number sometime in the next week (but sometimes to tell you the truth due to appointment scheduling and missed calls from the Dr’s office etc. I didn’t know for 3 MONTHS. Imagine trying to control your bg based on what your number was the previous week or 3 months ago!). Urine testing was better than nothing but hardly timely or precise either.
So many of the studies about complicatons over decades (instead of just a few years), still may have a lot of this “earlier cohort” statistics in it. I think these statistics are useful but they do not represent the modern standards we have for “bg in control”.
Some of the latest standards for good control are really quite stringent. For example if I have an A1C in the low 6’s my doc tells me it’s OK but it would be better to be in the 5’s. Wow, that’s such good control compared to just a few years ago, or 30 years ago.
You might think some of your recent bg’s are horrible, but compared to the stone knives and bearskins days they might be quite good. None of us knew what our bg’s were back then.
Now that doesn’t mean we should want to go back to the stone knives and bearskins days! We really can do better today and should try. We won’t always be perfect but I’m convinced it’s worth the effort.
Could it also be that many years ago our food supply was more wholesome and pure? No HFCS, artificial sweeteners, more whole foods and less processed? Could that have been one of the “lucky coins” in your pocket? Also could being more active in the last generation have added more exercise into the equation?
The lifestyle may have been an added factor in your good health…
IMHO, YMMV and any other letters that may apply!
Ressy
I was dx’ed pretty close to on the cusp of that, so I never actually have not had a BG meter although I am very glad to have one that doesn’t have the blotters! I am not quite sure how to interpret certain sections of deanusa’s posts although I am interpreting “big city” as meaning “more tightly controlled” and “feel better” as “feel better” but the complication business is sort of a huge psychological motivator for me? Then again, I was also dxed @ the dawn of the video game era and it has occurred to me that OCDiabetes could just be a translation of shooting more space aliens into lifestyle choices?
I would also wonder if by being free of complications despite looser than generally recommended control, which is what I think he’s getting at, there could be elements of kidneys held together with duct tape and baling wire and capillaries still allowing blood to ooze through but ready to clog at any moment? Whenever I’m running and feel tired or out of gas, I figure I’m about to drop dead. So far so good but one never knows…
I’m not so sure about that. There was a thread of literally thousands of posts about #25 (Bonds) on the Fantasy Baseball Cafe a few years ago that speculated that there were other players exhibiting signs of ‘off-label’ 'roid usage. I recall a couple of guys mentioned as being Ted Kluzewski (sp?) and Roger Maris? The article or post may have been speculative but I also read a book by Dick Pound about the Olympics that mentioned that steroids were very common in agriculure in the 1950s and would have been readily available to anyone with a farm and were, in fact, widley used in the Olympics in the early 1960s.
that makes sense. thanks does anyone really know how old the study info is and what other factors there were?
there really is no cut off point or a line drawn in the sand saying if you go this far for this long this is what will happen.
lol sorry! i lived lets say 2 hours from the closest walmart! and i swear some of my docs were treating dogs at the same time as me.and everything closed at 5pm. and in the winter months snow removal depended on “earl” having his cows milked. it was just a little bit country!so the big city is anyplace that has a 24 hr service!
i find the “psychological” part is what throws me out of whack.i was scared to death of what was going to happen to me because of the way it was handled back then…so when things didnt happen and i found others that it didnt happen to either i suspected that maybe it was not 100% the truth.
and lol i wont admit it but that thought of barely being held together has crossed my mind more than once! they dont really know and i dont know either.
thanks for the input
I’ll look into it, sometime… right now I’m a little fried because I just got off of working an overnight shift… lol But I believe the study has been involving people who have had Diabetes for 25-50 years, with no complications to very minimal complications, or so, or longer… And that it is still active, ie, they are still studying people, currently. I thought Richard157 was a part of it, but I could be wrong… Not sure. I know some of our TuDiabetes folks are.
Ignorance is, unfortunately, the only thing you are guaranteed to encounter as a D, even from other Ds:)
I know the type you’re talking about. There are some people who are convinced that because they can use google to find a paper or two that they can make grand statements of fact. I’ve had over 22 years of formal education, over a decade of it in science, and I rarely make definitive statements. So please, don’t confuse these pseudo-science guys with real science guys:) There isn’t a single paper out there saying that an A1c of x or doing Y will or won’t definitively lead to complications. They can give you odds, but everything about D is an individual disease. A lot is control, some is genes, some is luck, and the rest is who knows what other factors. This type of person is a big reason why I limit myself to what scientific discussions that I get into nowadays. It isn’t worth it.
I’m glad you’re taking better care of yourself now though! I actually feel guilty for not taking better care of myself when I was younger because I had access to technology that people dx in your generation didn’t. You have no reason to proven anything to anyone else. You know the truth and, really, you’re the only one that matters.
I agree 150%. I have been walking around for the last 57 years - well…probably 50 years with no testing, no pumps, no knowledge etc etc. I was diagnosed at the age of 3 while living in Kenya, East Africa. ? Diet ? what diet? People believed back then that a diabetic “had” to eat ?? Why test your urine for sugar - it is already leaving the body - it has already been “processed”. You had to wait three days for the results of a “blood test”. You had to steralize a glass syringe by boiling it in water on top of a stove. In between “boilings” you had to keep them soaking in “methylated spirits (alcohol)”. The needles had to be cleaned with a copper, thin wire to get the clogged insulin out. They were constantly “blunt” and you ended up with huge lumps over your body where scar tissue and un-used insulin used to sit. People looked at you in those days, like you had a terrible “disease” and you were somehow mentally “retarded”, you were defective, and you had to be hush-hush about your diagnosis.
Well I must say things have changed - much for the better I might add. I am very suprised I didn’t grow up with all sorts of eating disorders, or psychological disorders.
BUT yes, why are some people unfortunately afflicted with the complications and ones like us, with relatively none. ?? Is it good genes, or what? I must say at almost 60 years of age (next month) I can add that I still work a full 10 hour day and I have all my limbs, eyesight, fingers, toes, internal organs,and certainly a good sense of humor to be able to laugh at the “old days” !!!
I hope people like us will continue to do “the best we can” and live a full and content life with D. (I have 2 adult healthy children also)
Sheila
As for studies you definitely want to google “DCCT” along with terms like A1C.
If you do this in google images you get taken to many graphs showing the rise of complication rates over the years at different A1C’s. e.g. This particular google images search
Some graphs from the above search:
You will note that many us here are aiming for a level of control a lot tighter than what the DCCT intensive group was generally able to achieve. We see that good control helps but there is no level of control, where the risk seems to go away, so there's no such thing as "good enough".
Look like you came from the times I did. Hey when I took it there were no bs machines. I think you should belive you. I know that loads of reseacher’s disagree but it was trial and error b/f they came out with all they have to take care of it now. Remember counting calories instead of carbs? I’m only 3 years inbehind you there on diagnosis.
Here’s my feeling - studies are helpful, but the human body is such a complex machine that not all the studies in the world could account for all the variations seen in the human body. With diabetes and any disease, there are exceptions and health can be influenced by so many factors that it’s almost impossible to find the answers in any study.
I think that doctors need to do a better job of pulling their eyes out of the paper and looking at and listening to the patients they are treating. They have to sometimes stop looking at numbers and blood values and studies and start listening to what the patients are TELLING them.
One thing that frustrates me is doctors who don’t listen. They read a study that says X should cause Y, and go forward believing that in every instance where someone has X, Y will soon follow. The world is not that neat. I know that I can do the same thing day in and day out, the same exercise, food, insulin, medication, etc and my BSL will be different every time!
I am diabetic secondary to a rare genetic condition called congenital hyperinsulinism (HI). Having HI has really forced me to be an advocate for myself. If I doctor says he/she wants to see me do something, I have to decide, in the end, if that treatment is the best thing for me. At the end of the day, I am responsible for my body and I know it better than any doctor. I think doctors are great, and they can be very helpful, but you know your body best.
People tend to hear what they WANT to hear when they hear the results of a study. That’s partly ignorance and partly human nature. Take the term “five year survival rate” that they use in cancer studies. If they say that children diagnosed with AML (a form of blood cancer) have a 70% five year survival rate, what that REALLY means is that at the end of five years, 70 out of 100 of the kids in the study had not died from the leukemia. That’s it. It doesn’t mean they’re alive (they might have died from an infection, a secondary cancer, car wreck, etc.) and it doesn’t mean that they’re cured forever.
It also means that out of 1,000 kids, 300 of them will die of the leukemia before the five years are over. But which ones?
Now, if you’re one of the parents (or in my case, the great-aunt) of one of these precious children, you look at that 70% as a beacon of hope for your little one – and when the five years are up, you WANT to believe that they are cured. But life doesn’t have those kinds of guarantees. Not with cancer. Not with diabetes. Not with crossing the street to catch the bus.
Big numbers across large groups of people in a study neither promise healthy survival nor guarantee complications or death.
We are each an experiment of one.
There are a few things that we KNOW will kill us (for example, being held under water for an hour or eating a box of arsenic or jumping out of a plane without a parachute will pretty much guarantee death, eh?) There are other things that MIGHT kill us before our time (for example, smoking like a chimney and drinking our breakfast, lunch and dinner in the form of Wild Turkey and gin.)
Poorly controlled diabetes isn’t quite that cut-and-dried. Large studies show serious, painful and dangerous complications in a large percentage of the people which poorly controlled diabetes over a long period of time.
If you want to take that kind of risk, go for it. If you want to believe that your best efforts are good enough and hope that you don’t get complications, that’s your choice.
However, in a large study or studies, the scientists are reporting the facts on the ground across the entire cohort of individuals in the study, not any one individual’s guaranteed outcome. They can’t do that and they know it.
That’s why everyone knows of one great uncle who drank, smoked, womanized, ate chocolate and steak, and lived to be 110 with no serious health problems. Because these people are statistical outliers, anomalies that catch our attention, NOT because their outcomes are what the rest of us can expect from similar behavior.
thank you all! a lot of good points and things to ponder. its very helpful to have a little light shed on some things that can be confusing.
thanks tom.
and doris im hopeful from your words.
I just hpe we do better than they say we will! LOL!
My endo has it right. “there is noone who’s a textbook case of diabetes and your s SURE not” LOL! I’m different what can I say! LOL!