I wish that I knew what I know now

Here’s our opportunity, guys! What advice would you give to someone who’s just starting on this journey? What do you wish you had known at the beginning?

There are two big ones for me.

  1. (From Dr. Bernstein’s book) When you eat sugar-free or calorie-free food and the food causes your stomach to expand, your body gets ready for digestion by producing both insulin and glucogon. In a type 1, no insulin gets produced… only a bit of glucogon… so even calorie-free / carb-free snacks WILL raise your bloodsugar! And that’s why! I feel like I could have avoided a whole bunch of highs if I had known that…

  2. You can find a good endo who will be a partner in your diabetes care. If you don’t have one yet, don’t give up. Don’t settle. This is a big deal, a life deal, and you deserve a great doctor.

Hey!!! I didnt know that!
"so even calorie-free / carb-free snacks WILL raise your bloodsugar!"
ugh… I have to learn everything the hardway.
Tell me more! Since I only know that i was diagnosed Gestative Diabetic and never had ins to go back… I’ve always considered myself type 2.hmm Wondering now what I am.?.
I’ll just keep testing til the money runs out or I get th ecourage to go to one of those clinics. ( I’m soooo nervous about doing that. I’m chicken!)
MeadowLark

I think this is mostly important for type 1s… if you produce any insulin at all, then you would likely make enough to balance something like a no-calorie snack, that needs the insulin only to balance your liver’s glucagon. I wouldn’t worry about it UNLESS testing shows you should :slight_smile: For type 1s, though, it’s a little different. I remember eating celery sticks / similar snacks and being both confused and infuriated that my blood sugar snuck up without any reason!

Doctors can be scary, it’s true, but I believe the adage: knowledge is power.

The one thing that my peditrician said when I turned 18 seemed to be true. Find a young Dr who will go through this with you. They will know you better than anyone else. God how I wish now I had listened to that at first!

Obeying the laws of small numbers- also from Dr. Bernstein. If you eat only a small amount of carbohydrate, your BG will only go up a small amount, even if you don’t get your insulin dose absolutely right. Similarly, when you are low, if you only correct with a small amount, you won’t go way high.

All I would say is good luck and find a good doctor to listen to. It seems like we all find our own way to deal with diabetes. I also like what LindsayRyan said: “It’s ok to make mistakes. There is no such thing as a “bad” diabetic. There is no such thing as a perfect diabetic.” Truer words were never spoken.

I know someone (on a friendly basis) who had been the director of nursing at a big local hospital. Please, no offense was or is meant here. Susan told me that of all the patients she saw, the biggest liars were the diabetics. The phrase “cheating on a diet” sounds a lot like what. Who wants to be found out to be a cheater? Not me.

My take on that is just like Lindsay said: it’s impossible to be a “perfect” diabetic, who or whatever that may be. When I was a kid, I keep charts of urine sugars on notebook paper. (N, 1+, 2+, 3+, 4+). Consistently, I recorded lower urine sugars that I tested because I wanted my doctor’s approval. Dr M would say the urine sugars looked good. I would feel ok because he wouldn’t be mad at me. At the time, he couldn’t really help me either. Over time, sometimes I would take careful control before blood sugar tests at the doctor’s office, etc, etc,etc.

Now, I’m sort of lucky. I’ve been through enough stuff with this disease so that I can be relatively honest about it. I tell the medical people I see exactly what’s going on with me and what I’m doing. I pay the professionals to help me, not to judge me. That’s what they do. The medical people I work with I value very highly. I know that I am the only one who treats my disease on a ongoing, daily basis, and I do the best I can. Some days are than others, but so what?

Too much emphasis is placed on numbers when managing diabetes; there is no such thing as a “good” or “bad” reading, its what you do with this information that matters, yet everyone acts as if the numbers are some kind of report card on how well or poorly you’re managing your diabetes. No doctor should treat it that way, and if they do, you might consider finding someone else. For example, if your hemoglobin A1c is 9.0, that doesn’t mean you’re in “poor control” as some idiotic health officials would suggest, the real issue is do you know what to do with that information? You should be working with your healthcare team to address why the number is where it is and see if there’s anything else that can be done to improve the situation. Every person with diabetes should know that blood glucose readings ARE NOT not report cards, rather, they are instructions on what you need to do next!!!

I’m going to play devil’s advocate, though I do disagree on a few points made.

  1. You are responsible for yourself. Yes, it’s impossible to be a “perfect” diabetic, but that’s only because perfection isn’t achievable in any event because to be perfect means everything would have to be under your control. However, that does mean there is no such thing as a “noncompliant” diabetic. Contrary to what, like, everyone else may say, if you know that you are supposed to test 4-6 times a day and don’t test at all, if you eat sweets and don’t at least attempt carb counting or proper dosing, and if you insist that you “feel fine” and never go to the doctor to get your vitals checked, you are, in fact, noncompliant because you’re not complying to the Law of Common Sense. I know people who have gone months without testing, months without taking their insulin. My mother’s co-worker’s son just had his foot amputated because he took the time to take care of himself. Sure, you can blame the medical field, but if it’s your body and you know something is wrong with it, it’s your responsibility to do your darndest to take care of yourself. He’s noncompliant and I’d like to see anyone try to argue against that.

  2. There is such thing as a “good” reading and a “bad” reading, otherwise we wouldn’t have target ranges and the ADA wouldn’t recommend to have an A1C under 7.0 to prevent complications and Dr. Bernstein wouldn’t be up in arms over the ADA supposedly trying to murder diabetics! That does not mean that it’s a personal reflection of your moral character. It is okay to make mistakes. Because you can’t be perfect. So it will happen, and most of the time they probably won’t really even be your fault. If you have a “bad” reading, it means something is going wrong. Who knows what it is? It’s your job to figure it out. But being a walking mistake is stupid. Take care of yourself. See #1.

  3. Taking care of yourself involves asking questions. You are probably not the Encyclopedia Diabetica. You probably don’t know everything. Ask questions. Ask your doctor. Ask your CDE. Ask your dietician. Ask your friends. Ask online. Etc. Etc.

  4. If you receive a good piece of advice, listen to it. If you receive a good piece of advice and you don’t understand it, ask another question.

  5. Listen to your body. Experiment. See what happens. No one is exactly the same, so some diets, some insulins, some exercise regimes will work differently for different people. Find out which one is best for you and be proud of it.

  6. Relax. Yes, be vigilant, but also have fun and enjoy your life. Find a system of support if you’re finding that difficult. Take time for yourself and for your hobbies and don’t let diabetes dictate what you want to do. There is always a way to incorporate diabetes into your life. Other than joining the Peace Corps and probably the military, there is nothing in this life a person with diabetes can’t do.

Okay, so I’ve probably pissed a number of you off, but I just wanted to explain the way I see the dismissal of people who don’t take care of themselves. I know so many people who have stayed in denial for years and suffered because of it, and I really hate that people try to say that there’s no such thing as noncompliant diabetics. I think the term noncompliant is probably mislabeled on a lot of people who simply don’t have appropriate treatments. But noncompliant diabetics do exist and they need our help, not our dismissal that they aren’t there.

What a wise and insightful thought - “instructions on what to do next”.

I really really really wish I had known that blood sugar can go up without eating.
I had no idea that the liver could dump into your bloodstream and make you high.
Back when I was diagnosed, we went to the doc once every three months for a fasting blood sugar. I’d be extremely careful for the entire week before, even lopping items off my “diet”, but I was doing the dawn phenomenan even then.
My reading would come back at 180 and the doc would call my mother and say that I’d been sneaking candybars. The feeling of shame and inadequacy has resurfaced even now as I write this. The sadness was horrible.

Great comments here from everyone. Thanks!

Steve,

I wonder if the accusations that diabetics “cheat” on their diets and lie, are really hiding the fact that these medical professionals who DON’T have insulin resistance give high carb/low fat diets to people with IR who do not lose weight them and are ravenously starving any time they try to lose weight.

I kept to a very strict low fat 1200 calorie diet right before diagnosis and lost no weight. I wasn’t cheating, but I’m sure my doctor thought I was. I dropped 20 lbs very fast when I switched to a Low CARB diet the next year.

I’ve read many postings on the low carb diet newsgroup from people who had the exact same experience. Their doctors believed tha the low fat diet should work for them, so they assumed when they couldn’t lose weight that they were lying!

Thanks Allison. This stuff is very good for discussion, and very good for somebody newly diagnosed to read.

I agree, Allison. Very well put. Thank you.

I agree with finding a good endo. A doctor who checks your A1c and says “see you in a year” or one who talks down to you is unacceptable. When you leave the doctor’s office, you should feel more capable, not hopeless.

Also, testing your bloodsugar is something you do when you’re taking good care of yourself. You’ll run into people who think you’re “sick” when you test your bloodsugar, but really it’s one of the healthiest things you can do for yourself.

Surround yourself with supportive people and learn to ignore those that aren’t so supportive. (I’m still working on this one.) And don’t be afraid to ask questions.

I so appreciate this remark. I get sooo nervous going to appointments and I always feel like I’ve failed in some way when I go in with high numbers. I remember when the nurse shot me a terrible look after she checked my BG and it was 270. I felt like I had committed a crime.

Your Dr sounds like 1 I had years ago. Really makes you wanna hurt him don’t it after being so good for a week or more?

Anyone know any good doctors in West Michigan???

My A1C keeps going up despite using Dr. Bernstein’s way of eating. My doctor does NOTHING (A1C 6.3, btw). Now I have beginning neuropathy and am TERRIFIED.

Not in west michigan, but depending on how far you want to drive my doc is amazing, but im in metro-detroit. The doctors are a husbad and wife team, they will even give you their cell phone numbers for you to call them if you need anything at any time.

Ruth,
When I was diagnosed I went to the endocrinologists at St. Mary’s in GR. They were very supportive and their dietitians are excellent - I want to say that their primary dietitian occasionally contributed to a column in the GR Press. Here’s their website: http://smhealthcare.org/clinicalservices/diabetes/. Best of luck!

-Sarah