That was my advice too Riva.
I was formally diagnosed in Aug. 1993, although I had diabetes before that.
- I was told to follow an ADA meal plan, which at the time was pretty high-carb, low-fat. I couldn’t stand it, so I abandoned it.
- I was never told the difference between fast-acting and slow-acting carbs, and I still haven’t found any difference.
- When I went on insulin in May 1994, yes.
- My doc didn’t want to give me a pump because he said it was too much trouble. So I got an old pump from a friend who’d gotten a new one, put myself on it, and then showed it to him as a fait accompli, whereupon he said he’d get me a new one. Never had to have a c-peptide test. Since I don’t know what my c-peptide would be, I’m terrified that Medicare won’t support my pump when I get to Medicare age. I’ve had it for 12 years, and not about to go back on shots!
- To limit your carb intake, or follow a low carb diet?
I was advised to eat complex carbs more! (ignored that advice!!)
- To limit your intake of fast acting carbs?
Nope.
- To rotate sites to avoid scar tissue?
Yes, and I have my injection sites checked every now and then
- To not use a pump because your control was too poor, or too good?
Was told there was no funding for a pump for me! but purchased once privately which has given me amazing control (sometimes)
I think I win…
I had a glucose tolerance test when I was 21 My fasting reading was 120, normal back then. I drank the syrup stuff…first hour it was 180, second hour it was 240, third hour it was 330, fourth hour it was 33 and they drew it before I passed out. I had to drink more of the sugar stuff to walk.
They told me to eat more peanuts, especially between meals…
Jesus wept.
Ressy
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No, not specifically, but I was started on the ADA’s old “exchange” system in 2000 (when I was diagnosed), which I quickly figured out to just be a ridiculous idea… I started carb counting soon after, and was counting carbs before I went on MDI, and I still eat a moderate amount of carbs, which works for me in terms of control… if it didn’t, I’d absolutely be more inclined to eat less carbs.
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Yes, and I was taught about the glycemic index early on, which I am thankful for… there are lots of foods I avoid because of the impact they have on me - trying to match insulin to them is just too frustrating to deal with
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Absolutely, though I can’t say that I’ve always been good about it - I have a fair amount of fat buildup on my stomach from injecting.
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No - and I don’t personally think that any doctor should tell a patient they can’t have one unless the patient has a strong (and very recent) history of DKA stemming from missing insulin or not testing… otherwise I think they should be allowed to have one whether their a1C is 5% or 15%.
The problem is, what did you win??? A lifetime of diabetes? That’s a prize I’d rather you hadn’t won!!!
Niece dx’d at eight years. We were told NOT to go on a low carb diet. But not to eat anything either. They give you a meal plan, and number of grams of carbs she should eat per day. Our endo is against grazing and wants us to space out all meals/snacks. She eats less grams of carbs than most children and does not graze all day like most children. Almost immediately, we spread out the grams differently than their meal plan to fit her appetite, but we stuck to the amount of grams per day specified for a couple of years. Now, some days she goes way under specified amounts, some days same and some days over but she is growing normally so we are more flexible. Based on her appetite not limiting her diet. Yes, we were told to pay attention to the glycemic index of the food, but not to impose a diet on her. Scar tissue… on the one hand were told we would have to rotate pump sites; on the other hand, everything looked good until recently. Now we rotate. Were told a pump is the best insulin delivery device there is which more closely mimics the pancreas (HA! don’t think so…); went on a pump within four months of dx. Never had a high A1c except right after dx. Poor control would definitely be addressed, but endo would never pull the pump because of poor control. I’m sure she would change something though.
You know, when I went on a pump and did the pump training I was really really angry about finding out about taking insulin for carbs and not just taking a set amount of insulin that was hardly wirking. I was dx almost 10 years ago, I am over being angry but I just wish I had known a little bit more about this diesease before I started having complications.
Many times people have been able to reverse complications after getting good control. I hope you will be able to do that too!
So many people have suffered from less than adequate diabetes education. It’s the one disease where education is EVERYTHING because while a doc or a CDE can advise you, you are the one who actually has to DO the day-to-day work. My state, Nevada, has a law requiring insurance companies to cover diabetes education, BUT
My insurance covers exactly $50 for diabetes education, which barely gets you in the door. Pro-active people find the internet, and TuD is a leading source for peer mentoring (Something the AADE is adamantly against), but sometimes that’s the only education you can get. I just feel sorry for the people who do NOT discover the internet, and just sit and do what their docs tell them, and then wonder why they develop complications. It takes hard work to avoid complications, and there is no certainty even then, but at least your odds go up!
Anyway, keep working at it – the past is the past, but you have the whole future to work on managing your diabetes, and you will find a lot of great ideas and people here who are more than willing to help you through anything that might be bothering you. Good luck!
Me too! But I would have rather known the truth all those years ago and had a chance to control things better. As it was I was clueless and my symptons were “all in my head”…
Good thing I really did like exercise and I also followed the old weight watchers diet which was low carb…
Ressy
Richard, I feel just like you are describing… I’ve gotten to the point that I do not trust the physicians completely, I find myself questioning them often because I think that subconsciously I either feel misled or failed by them. (I am T1 for 30 yrs).
Just recently I was told to never use a spot w/ stretch marks for my pump site or injections. What??? I have a lot of stretch marks on my stomach from being pregnant 20 yrs ago but was never told this before - Not even by the pump trainer. Oh well…
I think as the years progress we will only be told more things that will boggle our minds. I have learned to just “go with the flow”.
Interesting… My health insurance has the opposite opinion of #4. You have to have an A1C of 7.0 or higher to qualify for the pump. Mine wasn’t so I let my numbers rise and then next time I had my A1C done, it was 7.1 and I qualified for it!
I was taught the first 3 in 1983. Although not to limit my carb intake, but to count carbs (sort of) and to spot carbs in food. We were encouraged to eat a certain amount per meal.
To the last point - I have been denied a pump, despite nagging for one over the last couple of years. I have no complications, an HbA1c of about 8%, and depression. So you would think I would be a good candidate. But the lack of complications shows I can do it without a pump (I just can’t at the moment).
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To limit your carb intake, or follow a low carb diet?
I knew nothing about carbs until the late 1990s. -
To limit your intake of fast acting carbs?
Again, I knew nothing about carbs the first person to mention carbs was a CDE. -
To rotate sites to avoid scar tissue?
Like you Richard that information wasn’t given. -
To not use a pump because your control was too poor, or too good?
I read about the pump in the early 1980s but didn’t understand how beneficial it could be but my dr. never mentioned it. I refer to prior years of living with Diabetes as the the dark ages because I felt that what I was taught years ago was all there was to living with this disease…it was so frustrating.
Lol Rebecca, where there is a will, there is a way!
I had to shop around Redshaw. When I got a second opinion from a different doc (an endo) she approved.
Do you know about Input? It is a UK advocacy group. The website has details on how to fight for a pump. Fight being the operative word. Good luck!
Do you feel angry when you think about your doctors failing to tell you about carbs? That information was available for decades before you heard about it.
Interesting info Lila, thanks!