Angry Enough to Do Something About It

Sometimes, it’s very hard for me to let go… and to live and let live. I’ve always had that lawyer kind of personality. I invest myself emotionally in causes, in people, in fairness, and goodness… I get wrapped up in it, and I want to save the world… If you know anything about me, about any of my comments, and discussions, you will see… that I have a deep sense of justice, and fairness, ingrained in me. It’s nothing personal, with anyone… it just is what it is.

Lately, I've been feeling particularly irate at the amount of ignorance that has come my way... not just of people who simply don't know anything about Diabetes, in general, but of people who have been told complete absurdities about Diabetes by their own healthcare professionals! Here are three examples:

"I'm doing 220 carbs a day, smart carbs, not empty McDonald carbs, and have found I do not have spikes any longer. Your body actually needs approx. that amount of good carbs a day to function correctly. If you take in too little, you'll drop or your body will release glucose into the body and cause spikes. According to my dietician."

"hi, i found out i had type 2 diabetes in december 09, was given all the information and was weighed, sent home with a blood meter. since then i was checking my blood sugars twice a day, more out of curiosity to be honest, but then when i seen the reading, was it a good one, a bad one, a high one, a low one, i wasnt sure, the more i read the more i felt confused, i know how hard i have been working to improve my eating habits. So this week seen my nurse for a check up, oh it was a diff one fromthe first visit, first thing she said was to get rid of the meter as it stress you out big time, although i had a load of questions to ask she very clearly answered them for me through our cnversation my blood pressure is also down. but the best bit was, at the dietican today, and lost 13ilbs since december, i was well plesed, so blood meter is long gone and im continuing the way i ahve been going. thank u for reading and listening"

"My grandmother had type 2 diabetes for 30 years, started a very high quality nutritional supplement and after about a year her doctor said she no longer has diabetes."

I just, I am astounded... I do not know what to think about these so called medical professionals. I know people are responsible for their own treatment, but for this ignorance to come out your own health care providers who you are supposed to trust is unspeakable. To go around telling people that their blood glucose levels will actually spike if they go low carb, keeping them enslaved to the ridiculous 220 g of carb a day diet, or to tell people that they don't need to test their blood sugars, to me... is tantamount to malpractice, and a need for being reported to some board, of some kind.

Then there's the other fraction of the equation... Why are people so blindly following their health care professionals, and not doing their own research, and then getting mad at those who actually tell them they are in grave danger? Why do people put their faith so blindly on something, without first looking into it? I just... I cannot believe a person would so casually throw away their glucose meter, or believe they HAVE to blindly eat 220 carbs a day... because of course, since they either take a pill, or inject themselves, they don't think it matters at all. You try to educate these kinds of people, and then they just bite your head off. It's not so much that every diabetic has to eat low carb... but to tell someone that they HAVE to eat a lot of carbs, or they will spike, is nothing short of absurd. Or how about telling someone that their Diabetes is cured, after 30 years with it?!

So I am angry, and I am angry enough to do something about it... But what should I do? How do we become active, as advocates of our health, to prevent health care incompetency? How do we prevent so many people from being completely ignorant as cavemen about their own personal care, and how do we prevent people with limited Diabetic knowledge (like some nurses and dieticians) from trying to usurp the care instructions a doctor has already given? I have read the many, and embarassing/trying/angering stories from others on this topic. This cannot be the job of a single person... we need to rise up together, as a society of people with diabetes, demanding appropriate care, and standards. We need to write letters, write doctors, report inappropriate staff to the appropriate board, or to their superiors... It is NOT okay to let it go! Until we take it on, so many people will lose their lives to this disease, and go on misdiagnosed, and developing so many serious, life threatening and altering complications which they could have worked on, and potentially avoided... Our letters, by the thousands, to places like the AMA, and to the ANA, and yes, perhaps even the ADA... are seriously called for. It's time we stand up for us, and for the truth... One person at a time.

I realize... the problem will not be solved in my lifetime... But if I lived, and did something, and gave anything in my life... until this disease takes my last breath... It will be putting every effort and strength I have into pushing people into knowledge, power, and appropriate care... to eventually find a cure.

My dietician told me I have to eat more carbs because I was spiking at night real bad. I was going to bed at night at 100 and I would wake up over 250 without eating anything at all. It turned out that i was going low in the middle of the night because I cut out the evening carbs and I was excercising. I was riding my bike for about 10 miles and swimming for about an hour. I would start this at 7 pm. My body had a late reaction to the excercise in the middle of the night and while it was starving for glucose the liver decided to dump a lot of glucose. The fix to this was to eat more carbs and protein during excercise and a little more before bed. My body was able to normalize a lot better at night. I went from 250 down to 120 in the morning. I know 120 is still a little high but better than 250.

So my point is that for type 2 somethings work and some dont. Its trial and error even for the dieticians and endos. Type 2 is not a clear science. You have your experiences and others have their experiences. If i would follow your advice instead of my dietician I would still be spiking at night. So in a type 2 world some things work and other things dont because we really dont know what our pancreas are doing. A type 1 knows excatly what their pancreas are doing. The level of excercise for me impacts my glucose. I have tried all kinds of lower carb foods and proteins and I have gone from 120 to 60 in 20 minutes. I then tried lots of carbs to experiment. I ate 3 doughnuts and went up to 250 during excercise to come home at 70 in 30 minutes. So this carb things for me is intesting and I cant be the only one with that problem. Without those higher carbs I cant excercise. Poses a different problem because I have to burn more calories that i eat in order to lose weight.

So my advice get mad and do something about it but find information from people to know if its half truths or why a dietician would make that kind of recomendation.

My experience is different from others but there are a lot of type 2’s here that have managed on more carbs than others and some on less. Type 2’s come in so many different variations that one thing that works for one does not work for others.

I feel your frustration. I have passed on information based on my experiences that would seem like lies to other type 2’s and now you have passed on infomation that would not have worked for me. Its frustrating because I have no answer for my problem but to keep trying different things.

take care

take care

Your talking about exercise. Exercise is one thing… she was told she has to eat 220 carbs, DAILY… not during exercise, or a little before night… ALL DAY… Eating 220 carbs. And that completely going low carb (and here, I am not talking about the carbs needed for exercise, and dawn phenomenon), she would never normalize, and always be with high blood sugar spikes, because her liver would put out a lot of glucose all day long. That is categorically untrue… and a disservice to people who are incredibly sensitive to any form of carbohydrate intake, no matter where it comes from.

During excercise I needed more carbs. But for me one strong hour of excercise has a 5 hour impact. So I am talking beyond that one hour of excercise. In the morning I used to run for about an hour. That day i would hit lows both at lunch and at dinner if I had the same amount of carbs without that hour of excercise. I would leave for lunch at 120 and by the time I would get to lunch 20 minutes later I would be in the low 70’s and with sweats and shakes. I would be grabbing at anything with sugar just to come up. Just by doing an hour of excercise in the morning.

So I guess going back to my point is that type 2 is not the same for everyone. Your carb intake could be completely different than my carb intake and so forth with the next person. Trust me I am with you about bad dieticians. I had some that told me some crazy stuff but I know some are good. It took me 5 dieticians until I found one that actually seem to know that she was talking about. I had bad endos who kept me on pills that could cause me to puke up every meal and told me to just to wait it out. So I am with you about being mad at people who practice things by the book when we are all not the same in the type 2 world. My suggestion to fight is maybe have a web site where you can rate your endo and dieticians and the level of effectiveness. Trust me eventually doctors start reading their reviews. I told an endo that I would go online and tell them how bad they were but some other person rated the same endo as wonderful. Go figure. by the way may carb intake is almost 300. My bg’s are between 80 and 130. I like them lower the closer I get to 100 my pancreas just want to keep shooting insulin.

take care and keep the fight going

I guess my point is… that dieticians are always telling their patients that following a low carb diet is bad, and that they should not do it… and they should always eat a lot of carbs a day, without care or thought as to how that person will react… and in many cases, trying to justify the higher intake, with medications, or insulin. I know carb intake will vary per person… but to just simply assume that a low carb diet is going to spike every diabetic, and that it’s bad… and that we all need to consume so many carbs a day, is insane.

Lizmari, I am also a woman of passions and causes. I can’t tolerate stupidity. However, I wouldn’t be so terribly hard on the people who don’t know any better than the ones you described. Many times they are under the influence that docs are still demi-gods and they are always right. Taking care of ourselves, taking control of our treatment in some areas of this country is still unheard of…I live in one of those areas. Many people when given the diagnosis, figure the doc is right and they will do what he/she says…and they will be fine. We found this out in a conference that included diabetics from age 4 to 78. The older the patient or caretaker, the more likely they were to not question the medical professionals. Now that’s not all people, do no one needs to get their hackles up, but in my part of the country, it is prevalent. They don’t have internet access, libraries are ill equipped to get information from, and docs don’t know that much about diabetes either. Is that an excuse NO, but it is a very real attitude.

And then there is the fear factor of not knowing will not make bad things happen. It took me two years of hemming and hiding before I came out and found out about my diabetes and became an expert on me. I am the only one who can tell my medical team what is going on with me…the ONLY one who can give them a proper and accurate picture.

I believe that those of us who have gotten the “star” of knowledge need to pass that information on to others. It is okay to question, to examine, to learn to share to give your docs a clear picture of you and your diabetes.
If you don’t then who will. Many people need that knowledge and find their way. AND then there are the docs who will “fire” the patient…people forget that the docs work for us not us for them. It is very scary to some to not have a doc to go to…So let’s not be so entirely hard on people about this. We are in a medical changing time…and only good can come of it.

“Comment by Lizmari 8 hours ago
I guess my point is… that dieticians are always telling their patients that following a low carb diet is bad, and that they should not do it… and they should always eat a lot of carbs a day, without care or thought as to how that person will react… and in many cases, trying to justify the higher intake, with medications, or insulin” I understand your passion and desire to get information across…but I think lumping ALL dieticans into one group is pretty harsh. My dietician suggested a lo carb diet, with exercise…we have talked about it often. I know that the clinic I attend is very high on low carbs and teaches all their patients to count carbs and the limit is according to weight, height, activity level etc…not just as a carbon copy of one to another. Please don’t scare people out of seeing these people who will be part of their treatment team, and that’s the idea I got from some of your posts ---- gosh I’d better not waste time and money on seeing a nutritionalist or dietician because they don’t know anything and will give me false information. Not a good plan. Test the information, if it doesn’t work for you ask for more.

Lismari, I hope that you keep your passion for helping people, you and I need to temper OUR passion with the interest of the other person in mind. God bless ya.

I think… you guys are really misinterpreting what I want to get across. I don’t want to get across beating people up for just plain following their physicians, without much thought… but I want to hold the medical community accountable, because honestly, if you found a good nutritionist, good for you… But it is scary to me, the amount of lacking medical advice medical professionals give to people… And the majority coming from nutritionists, nurses, and lastly, many doctors. Come on, you have to agree with me that telling someone to throw away their glucose meter is pretty darn irresponsible… We need to do something to raise standards. That people are not just told you need to treat your Diabetes this way, and only this way… or told that their condition is not important enough that they need to monitor their blood glucose levels. Or that it will get cured by taking some dumb supplement. This is very scary stuff! And yes, people need to be taught that if something sounds too good to be true, it probably is, and that goes for the medical community’s advice, as well… not just someone who can con them out of money. I don’t want to scare people into not going to a nutritionist, or any other medical expert… I want them to have their eyes WIDE OPEN when they go to them. That is all I’m saying… And I will always say it. Had my father followed a low carb diet, and not a high carb ADA diet, he would still be here… But he had to blindly follow… like so many do now, and they just won’t be here to tell their stories in 20 years. And THAT is serious enough to tell people they need to pay attention.