The Connecticut Massacre

There is a veritable fracas going on in the social media over the massacre in Connecticut. People saying we need more guns, fewer guns, better mental health care, remarking that a lot of the mass murderers wouldn't qualify as being mentally ill, etc.

Then I read this article by Liza Long: http://www.huffingtonpost.com/2012/12/16/i-am-adam-lanzas-mother-mental-illness-conversation_n_2311009.html

I think you should read it before you read the rest of what I say.

Mental health has long been the stepchild of medical care. For a long time, physical care was covered at 80%, but mental care at 50%. And I don't know if that is still an issue in some places. In addition, mental health visits are limited, in my plan, to 40 a year, or less than once a week. I think this is very common, and totally OK for a person who has a disease treatable with meds + talk therapy, but totally inadequate for someone like Liza Long's son. It could be that he and others like him need residential care for the rest of their lives, to keep them from ending up as Adam Lanza did, although I have also heard that Lanza was not diagnosable as a psychopath. So the question is just where do individual liberties and the duty to protect the innocent intersect? A person cannot be held against their will for more than 3 days without abundant, incontrovertible evidence that they are a danger to themselves or to others. Where do you draw that line? I hear a lot of people arguing vociferously about mental health care, and gun laws, but it just ain't so simple!

Then there is the issue of gun laws. It should be apparent that what we have isn't working. Decent, honorable people don't want their guns taken away from them, but according to Mother Jones, the vast majority of recent massacres were conducted with legally purchased weapons. The following article makes a lot of sense to me, and don't take the first sentence as being indicative of what the article is about:

http://www.jewishpress.com/indepth/opinions/the-us-should-learn-from-israel-how-to-permit-not-outlaw-guns/2012/12/16/

And now, I will go back to trying to forget (as if I could) what happened. :-(

Focus on Health, Not Obesity

I'm still ruminating about the pitfalls of listening to our overly weight-conscious society's judgments. I just read a blog by a Type 2 talking about how to lower the body's natural setpoint to the new weight, by bringing up studies that show that people who lose weight don't function metabolically like people of the same weight who have never lost weight. He mentioned that one year out from weight loss, the body is STILL reacting as if it were starving, and still striving to regain the lost weight. And that he would slightly increase his carbs in order to maintain his weight in the expectation that his body would eventually accept this weight as its new natural and become metabolically sound again.

This just rings false to me. I don't think there is any evidence that the healthy body will EVER become metabolically sound at a lower weight than that achieved by natural, intuitive eating. Of course, one should eat when hungry, and stop when full and not become overfull. And of course, it's better to eat savory foods, and not overdo the sweets. I think that's a given. But if a person follows that philosophy, maybe their body's natural setpoint will be above what the arbitrary BMI tables say is normal. And trying to lose weight down to a specified goal might actually be eating disordered. Dieting doesn't work for the VAST majority of people who try diet after diet in the hopes of permanently losing weight -- maybe that's because diets themselves encourage disordered eating?

I think it's time for us as a society to rethink just what we're talking about when we talk about weight. I think weight is not really the issue; health is. We're genetically diverse, so why is it a problem when our bodies are diverse in shape and size as well? I want to see the media portray in equally good light people of all shapes and sizes, not just the naturally skinny. Obsessing ALL your life on how to be skinny is really not a good way to live, and of course, Type 1's are susceptible to diabulimia, and that can be deadly. But anorexia and bulimia affect non-diabetic women as well, and if they don't die of it, they can get very sick, and never be healthy again. Let's concentrate on health and let weight take care of itself!

And PS the guy who wrote the blog just called it diabetes, and I mentioned in my response that he would do well to be specific about what type he was talking about, because it does a disservice to Type 1's who may NOT need to lose weight, to have their ignorant family, friends, co-workers, etc. nagging them to lose weight in the hope that it would cure their diabetes!

Feelings

I HATE the feelings of being fat and wanting to restrict, and omit my insulin, but the answer is NOT to cheat and NOT to restrict insulin and food, because simply losing weight and being ketotic will NOT make me feel any better. And I know that. But what would make a person struggling with those feelings feel better? Could she be as loving and supportive to herself as she is to others? Could she do something loving for her body? I don't know what that would be, but there must be something. Can she find the courage to be grateful to her body for giving her life and letting her do the things you want to do? Can she see that there is SO much more to her than just her body, and that she is a worthwhile and lovable human being no matter what?

Your body is NOT the enemy. It is your friend, and it will give you the chance to live and love, as long as you let it. The hard part is letting it. Those crummy feelings that come up are just that -- feelings. They are NOT reality. You are NOT ugly, and you may not even be seeing your size accurately -- your body image may be quite distorted, and you need a reality check there, too. Can you understand and believe that you eat and take insulin in order to nourish your body so it can serve you well? If you can believe that, and stop judging and criticizing yourself, then the guilt simply goes away, and you stop hating yourself without even trying.

The REAL enemy is the eating disorder. Call him Ed. He's abusive, and he cajoles you into thinking you have to depend on him in order to be loved, but he's a liar and a cheat, and you DON'T need him in your life. Get a divorce!

No D Day

OK, today is the day that we people who usually blog about diabetes are NOT going to do that. So I'm going to tell you a little about myself.

I was born in Great Falls, Montana, and raised in Los Angeles. When I was 8, we took a family vacation to Ensenada, Mexico, and I was fascinated by the fact that people were talking some kind of bla-bla-bla to each other. (Remember, I was only 8). But then a startling idea took hold: I was in the lobby, looking at the clock, and I suddenly realized that they weren't thinking "clock" and saying "bla-bla", but that it really WAS a bla-bla to them.

That inspired my life-long interest in other languages, and I resolved to become fluent in another language. In high school, I took Hebrew, French and Spanish, and in college, I took Japanese, and a smattering of Russian and Hausa, the language of Northern Nigeria. I was lucky enough to be selected to spend my junior year abroad, and actually DID become fluent enough in Japanese to be comfortable with conversation and to read at about a 4th grade level.

When I got back from Japan, I finished my major in Linguistics, and eventually decided to become a teacher of the deaf, because sign language is a real language, too (at the time, many people thought it was just pantomime and gestures), so I got my MA in Special Education of the Deaf. I did that for 5 years, and then switched to teaching English as a Second Language (which I had done in Japan), and eventually Japanese, too.

At some point, I found out about Esperanto, which is a language created and published by a Polish-Jewish ophthalmologist in 1887. It's fascinating, because he intentionally made it as easy to learn as possible, eliminating such bugaboos as gender, verb conjugations, irregularities of noun formation, and by regularizing formation of classes of words. I learned it in 10 hours (remember I have background in French and Spanish, and it is based mostly on French and Latin), and I have since used it to make friends worldwide, and to travel all over the world. It has been a lot of fun.

So my life has been very wrapped up in language, which of course expands to include culture, art, food, music, architecture, and everything else that is wonderful about our human family. How lucky I was to be able to take that vacation to Ensenada! :-)

Comparing Bodies

One of the things I do when I'm in a public situation and have the urge to compare is to say my mantra over and over again: "Everyone's DIFFERENT!" Not better, not worse, just different.

Yeah, I see these beautiful women with slender waists (I don't even HAVE a waist!) and slender upper arms (mine swing), but then I remember I also have to notice that some of them have tubby tushies, and thunder thighs, and some of them have no chins, and some of them have multiple chins, and some of them have straight hair and some of them have curly hair, blonde, black, huge boobs, no boobs, and all the other things that people can hate about themselves, and ya know what? Why am I obsessing over my "flaws" when I have so many other parts of my body that are just FINE, and why is it so important, anyway?

I have yet to see the "perfect" woman, but that's because she doesn't exist. So why should I expect perfection for myself?

When you compare, it's not reality; it's your obsession with perfection. Keep reminding yourself of that: it's NOT REAL! You are just as beautiful as the rest of them, if you can only allow yourself to see that. And while I will admit that I'm not always successful at this effort, I think it IS worth it, because I am working on allowing MYSELF to feel better. And that's what matters.

Body Image

I was going to send this private to a certain lovely young lady, but then I decided to post it so everyone could read it. Just like there are stereotypes of all T2's being fat, there are also stereotypes of all T1s being thin (and diagnosed during childhood). None of these is true. While most (but NOT all!) T1s probably WERE skinny at diagnosis, due to the fact that the diabetes had been eating away at their bodies for quite some time before diagnosis, once they went on insulin, their natural body metabolism took over, and they once again were on track to be the size their genetics determined they should be, assuming normal and healthy food intake.

It's bad enough that MOST women buy into this idea that we should ALL be thin and pear-shaped, but for a woman with T1 diabetes, it's even more damaging, because weight loss is so easily achievable (although at a tremendous cost). If truly NORMAL women have a wide variety of body shapes, why shouldn't we? We're no different from them, except for having uncooperative pancreata!

And while I may sound like I'm preaching from on high, this is EXACTLY the issue I myself am struggling with. I was never fat, but I'm built like a barrel, with no waistline. And my family has called me fat ever since I was a child, only because my sister was skin and bones thin. And they threatened me with diabetes (my grandmother had it) if I ate things they didn't approve of. What a load of crap to put onto a child! And if it's crap for a child, it's certainly crap for the rest of us as well. 

I already know that the vast majority of women don't look like air-brushed, anorexic models, but who ever said they should? The women I know and love ARE physically beautiful just as they are, and I want them to take care of their physical and mental health as best as they can (although there are always bumps in the road), and devote their lives to the causes that are important to them. Aren't you a worthwhile person who is contributing to the world, a lovable person, and a beautiful person? So who cares what those artificial, arbitrarily made-up BMI tables say, anyway?

Dealing with an eating disorder

I'm on a list on Facebook called Diabetics with Eating Disorders. You may or may not know that I decided to go into treatment last April because I was literally starving myself, and the day I woke up and couldn't face eating at all, I knew I needed to do something. In fact, I've been bingeing since I was in my teens, but bingeing and not taking insulin is a whole different story. After I binged myself into a coma in Sept. 2010, and was confronted with the reality of the fact that I NEED to control my food intake and take my insulin. So I swung in the opposite direction, and started to limit -- at first under the guise of low-carb, but not true low-carb, because those who are following low-carb diets are not eliminating all plant and most animal foods, nor are they limiting the quantity of what they eat. So I decided to enter treatment.

So one of the women posted about the fact that she had fantasies about gaining enough weight to qualify for weight-reduction surgery, and I have to admit that I've had the same thoughts. But I know people who've had weight-loss surgery, and it's no picnic -- some of them succeed in keeping the weight off by following a draconian diet, and others just stretch out their stomachs by eating too much, and gain the weight back. So I guess we ALL, both people with ED and those without, have to accept, somehow, that we were born predisposed to our own body builds, and we AREN'T going to all look like the models in the magazines. Which is not to say that it's easy -- I just ate a Mounds bar, and felt like crying about it -- but either I work on self-acceptance, or I might as well toss it all in. Because there is no realistic or practical choice, even though your mind tells you lies. I'm going to bet that there are LOTS of other women out there listening to the lies, and trying all the miracle diets and pills, and maybe they can abuse their bodies more easily because they don't have to deal with the diabetes demon as well, but we all have to learn to believe that life doesn't HAVE to be that way. 


So my goal is to accept that I'm NOT obese, and I'm NOT willowy, but I'm shaped just like a 64-year-old should be. And to accept that yes, I have to take insulin, but I'm not even taking all that much -- certainly within "normal" limits, and that it's not a catastrophe to take a little more when I'm having a big meal, which is not very often. My body lets me BE and DO, and the insulin lets my body live and not die. So I need to just let that be, and stop obsessing over it.

Working as a community

I just saw another thread somewhere in which the parent of a T1 was railing about how bad an article about T2 was. Well, it was true that the article really didn't apply to T1, but that wasn't the point. Most of the articles in the press are going to apply to T2 (but sometimes both), because it really is a common and serious disease.

think it's important for all people to have a realistic view of all types of diabetes and genuine compassion for them. SO many T1's are so narrowly focused and invested in their own disease that they remain totally ignorant, and sometimes actively hostile and biased toward T2. It's not RIGHT -- NO ONE with any disease deserves blame and shame, and while it would be nice if the media specified T2 when discussing things that are appropriate to them, a mature attitude for T1's and their parents would be to sit back and remember it doesn't apply to them, and that it DOES apply to the vast majority of diabetics. And appropriate action would be to respond to the media, reminding them that clearly indicating whether they are talking about T1, T2 or both would be welcome and educational. But the comments about how stupid an article that is obviously about T2 is, or getting furious because the diabetes isn't a T1's fault, and remaining ignorant of the very real problems faced by T2s and blaming them for something that is not their fault either is really not helpful to anyone, and only creates bad feelings in a community that should be supporting each other. We need to be open minded and empathetic toward the problems faced by all of us, even if we need to deal with them differently. We need to educate the media and the public, and while that is not easy, we need to persevere. And not take anything personally, but rather use it as an opportunity to educate.

Rethinking Type 2

I just watched a YouTube video of a Barbara Walters show with Paula Deen as co-host, and Dr. Jeff Nathan and young Misty Ayala as guests. You can see it at

http://www.youtube.com/watch?v=Ny5fKOK7DMU&feature=plcp

First off, Dr. Nathan DID distinguish between Type 1 and Type 2 very clearly, and to me, it was obvious that when he was talking about lifestyle changes and about Misty, that he was talking about T2. My only real complaint is the label "the Fat Show", simply because the real problem with merely correlating T2 with obesity is that it doesn't HELP anyone. Telling people they're fat when they know perfectly well they are, and already feel guilty and ashamed about it is not really helpful. Seems to me that the issue is not whether people with T2 are fat, but understanding that metabolism is complicated, poorly understood, and very hard to regulate when it's malfunctioning. And there is increasing evidence that T2 is NOT a merely a disease of pancreatic malfunction, but a panoply of metabolic dysfunctions. The fact that Misty was able to come off Metformin, and get good control of her diabetes while remaining obese points very clearly to the fact that obesity is not the CAUSE of T2, but more likely a result of metabolic dysfunction, whose mechanism is not yet fully explored. I think this is what T2s are trying to say when they object to the linking of T2 and obesity. And it seems like many people are plugging their ears and singing lalala when T2s try to make this point.

One of the things I am working hard on is NOT to take it personally when the media is clearly talking about obese T2s. I know that T1s get upset when they are ragged about why don't they clean up their diet, etc. by people who really don't know anything about diabetes, but it's JUST ignorance, and we really need to learn to let it roll off our backs. In my mind, it's just about the same as when people tout miracle cures for ANY disease. I do have my own personal crap detector (AKA Snopes) in my brain, and I'm really working on learning to use it more automatically. The real issue is to call out the bullshit when appropriate and to be able to distinguish when it IS appropriate. When your best friend tells you that your diabetes could be cured if you'd eat less, call them out on it, and when the media fails to clearly distinguish between the types, send out answers and press releases, but when the media IS appropriate, even if not perfect, as I thought this show was, I think they should be applauded for it, not criticized.

The 4 D's

It started when I was in the 5th grade. I made a naive remark that grossed someone out, and they started avoiding me, or else tagged me and ran after the others screaming "I've got the cooties and I'm going to give them to you! Ha ha!" and it turned into a game of tag. For everyone else, not me. No one to eat lunch with, no one to walk home with, no friends to play with after school. I must have been acting badly at home, too, because my mother was always yelling at me as well. And I remember thinking to myself that the only time I was at peace (not happy, just not being tormented) was while I was walking between home and school.

Eventually, the other kids forgot about it, and we moved on, and I began to have friends again and became more content, but the experience seems to have scarred me for life, because I have had recurrent major depressions ever since then. Events that other people find stressful can throw me into a tailspin, and I have had as many as 5 suicide plans in my head at any one time.

And then diabetes came into the picture. I was 45 when I was formally diagnosed, and I was distraught. Blame and guilt and confusion, and poor medical guidance threw me for a loop. I spent many hours crying, alternately pretending it wasn't true, and frantically trying to get information and guidance. In the beginning, I didn't even know whether I had diabetes or not (my doc called it hyperglycemia), and even though it is beyond question by now that I have diabetes, my emotional self still wants to deny it, and I don't always take care of myself. And when I'm depressed, I really DON'T take care of it, and we all know where that leads!

So I call my illness the 4 D's: Diabetes and Depression, the Deadly Duo. Either one would be bad enough, but together they almost killed me.

I think mental health care needs to be a component of EVERYONE'S diabetes management plan. For me, the one makes the other worse. If my blood sugar is high, I'm more likely to get depressed, and if I'm depressed, I don't take care of myself, resulting in high blood sugar. Vicious cycle if I ever heard of one. So I would like to see more mental health professionals who are familiar with diabetes and what it does to a person's head, and better access to mental health care for people with diabetes.

And I am happy to report that I AM now getting very good care, both with antidepressants and talk therapy. I've been pretty stable for the last couple of years, and I now have a plan and a way to get help if I do get depressed. I wish everyone had that.

Not a teenage issue

When people think eating disorders, they think of girls in their teens and twenties, and they think of the stereotypically emaciated models and actresses. And the media feeds on this image, showing young women in bikinis whose bellies have sagged (oh no, she's gotten fat!) or women whose backbones look like mountain ridges.

But it's blatantly untrue and damaging to ALL women, no matter what their age. I've been talking to other women about whether they compare themselves to other women they see and judge whether they are fatter or thinner than the other woman, with corresponding despondent or joyful feelings. And most of them have admitted that they do. How depressing!

And we all know that T1 diabetic women are more susceptible to eating disorders, because they have the diabetes to deal with on top of the discomfort that most women feel.

But I'm going to posit that eating disordered thoughts occur in older women as well as younger women, and that they exist in T2s and well as T1s, because all of us are dealing with food issues, regardless.

With that as an introduction, I'm going to freely admit that I have an eating disorder. I have had it since I was in my early teens. At the time, having been restricted from eating anything with sugar by overly health-conscious parents, my brother and sister and I used to spend our $1 of allowance money buying 20 candy bars each (and they were bigger in those days), and consuming ALL of them in one sitting. Looking back, I recognize that that was the beginning of binge eating, although I was not aware of it at the time.

Later on, when I got out on my own, I went into full scale rebellion, deciding that I would eat anything I wanted, however much I wanted, any time I wanted it. This developed into a habit of eating only one food at a meal, sometimes a giant portion of ice cream, and subsequent weight gain, although I was never actually obese.

Then came the diagnosis of diabetes, which caused even more feelings of rebellion. I couldn't stick to the meal plan I was given, and I was so starved that I would eat until my stomach was distended and painful, and still feel hungry. Once I went on insulin, the hunger abated, and I actually LOST weight on insulin, even though the literature says insulin causes weight gain.

But I was still bingeing, and in the summer of 2010, I started bingeing hardcore. And binged myself into a life-threatening coma. As a result, I became hypersensitive about food and began to limit my carbs. Well, at first it was only a few foods that I eliminated, but my food vocabulary got more and more limited, until I was only eating a cup of milk in the morning, a cup and a half of Greek yogurt midday, and a small hamburger patty at night.

And I lost more weight, and people kept telling me how good I looked, and I kept on trying to assuage my guilt for being fat (most recently, not even overweight) by eating less and trying to feel virtuous when I was hungry. And still occasionally bingeing. The only concession I made to the bingeing was to monitor my BGs and take insulin when I thought they had gone high enough. Needless to say, this was NOT a good way to live.

So about a month ago, I started to take steps to deal with it, which first of all, took awareness of the condition I was in, and then the willingness to do something about it. But it's HARD for someone as old as I am to admit to having a "teenage" condition, and second to actually seek help.

So I've been in treatment for about 2 weeks, and yes, it has been EXCEEDINGLY stressful and difficult. They're making me eat more than I feel comfortable eating, and making me eat foods that I had eliminated a year and a half ago. Some people can do well on a low carb diet, especially if they like a lot of different vegetables, and are creative with and like carb substitutes. But I've been a picky eater since I was tiny, and never liked to cook, so the obsession with eliminating carbs became an illness for me.

The reason I'm telling you all this is because May is Mental Health Awareness Month (or something like that), and eating disorders are a mental health issue. And they're probably a lot more common than we realize. And they're NOT just a teenage issue!

Diabetes as a Spectrum Disorder

I've really been thinking about the T1/T2 wars (and please don't deny that they exist!), and was contemplating how to reframe the question so as to help everyone understand each other. And I think the concept of diabetes as a spectrum disorder is a really helpful one.

In academic studies, they concentrate on insulin resistance and autoimmunity as an either/or in order to make the population they are studying as homogeneous as possible. But in real life, it's just not that simple. Think about it:

First of all, insulin resistance. The fact is that EVERYONE, not just diabetics, falls somewhere on the scale of insulin resistance, all the way from people who are extremely insulin sensitive to those who are extremely insulin resistant. The curve is actually skewed to the right, which means that most people are at least somewhat insulin resistant. Of course, if their pancreas is healthy and they don't have the genes for diabetes, their pancreas merrily churns out the exact amount of insulin they need. While it's true that obesity correlates to some extent with T2 diabetes, it's NOT the cause, because while 33.8% of the general population is obese, only about 8% have diabetes of ALL kinds, so there are far more obese people who DON'T have diabetes and never will, than those who do.

Then there is insulin production, which again falls on a scale from zero production to massive production. Autoimmunity is not the only cause of pancreatic failure: it could be surgery, it could be amyloidosis, or it could be another cause which has not yet been determined. But again, this is not an either/or criterion; it's a spectrum, and some people can be producing some of their own insulin, yet not enough to stay alive.

So if you visualize an axis, with insulin resistance on the x axis, and insulin production on the y axis, you would see that a person could fall anywhere in the quadrant, regardless of the cause of their diabetes. So you could have extremely insulin-resistant "T1's" and you could have insulin-sensitive, slender "T2's" and everything in between. And because of that, clinically and experientially, the either/or, T1/T2 distinction breaks down -- the whole point of diabetes treatment is to do what the individual needs. So there is really NO basis for anyone with diabetes to feel hostility toward anyone else, because we're all unique individuals, and not one group fighting against perceived blame or victimhood, or any other response from the other group.

The fact is, we're in it together, and we need to support each other, no matter where we fall on that graph!

Diabetes and the Media

It's sort of a damned if you do, damned if you don't position, you know. People with diabetes don't want to be discriminated against because of their diabetes, and some of them go to extraordinary lengths to seem just like other people. But when everybody was so excited that Nat Strand won that race, no one mentioned that she had several episodes where she would have died without the help of her partner. No one mentions what could happen to that race car driver if he had a sudden unexpected low on the track, either. You see the smiling faces of all these super-healthy, attractive young people with diabetes on all kinds of advertisements, or you see equally handsome, not quite as slender, but still healthy looking older people, so who can blame the world for thinking that managing diabetes is not particularly difficult?

While it's true that diabetics should NOT be discriminated against, and should be able to do anything they're capable of, the media, in both articles and advertisements, gives a VERY distorted view, and the public has no way of knowing any different. And you're right, it's irritating as hell!

Learned the Hard Way

OK, a day late on this prompt, but it's one I can't skip. Because I learned something very important the hard way. And that is, I have diabetes.

I have always joked and called my diabetes Type Weird, mostly because I never fit into any of the boxes very well. My diabetes developed relatively slowly -- in 1990 I had a normal fasting glucose, in 1991, I had numbers that would be diagnosable today, but weren't then, in 1992, I was just at the number for diagnosis, but since I had had a coronary artery spasm, they chalked it up to being sick, and in 1993, I went over the line and got a diagnosis.

Needless to say, during these years, I was emotionally in bad shape, because my family was terrified of diabetes since my grandmother had had it, and I was raised with "Natalie, don't eat that, you're going to get fat, and you're going to get diabetes!" And my reaction was always a quiet, mental "shut up!" So as my numbers started to go up, I was scared and rebellious. On the one hand, I wanted a diagnosis, because I wanted to take care of it so as not to get any complications, but on the other hand, I DIDN'T want to be bothered with thinking about diet and exercise. And on the third hand (there is always a third hand!), I desperately didn't want to be considered fat, and be told that I had caused my diabetes by getting fat. (Thank you, family and media!)

Well, the fact was that I wasn't fat, although I was overweight, and diet and exercise didn't work for very long, and then Glucotrol, a sulfonylurea didn't work at all, and I was on insulin 5 months after my formal diagnosis. Insulin worked like a charm, and control was pretty easy, because I DID still have some endogenous insulin production. And because control was so easy, I would often omit insulin, and watch my BGs climb for a few days until I had to admit that no, the diabetes did not go away while I wasn't looking. But all I had to do was take a little insulin, and my BGs would go right back down again. And meanwhile, I lost 20 lb. and if I had been a true T2, that should have improved my situation, but it didn't do a thing -- my insulin production continued to deteriorate slowly.

OK, fast forward to 2010. During all those years, I had been playing at not having diabetes, and always caught myself before I got into real trouble. But 2010 proved different. I was feeling really rebellious and REALLY didn't want to deal with the food restrictions, and I started bingeing badly. I had always binge eaten, but this was a crisis situation. I didn't omit insulin entirely, because I did wear my pump, and always had that basal going in. And I did take boluses, but not always, and often not enough. So my BGs started going up and I just sat there and watched them, but didn't do anything about it.

Until I started going and staying above 400 all the time. With excursions into the 500's and sometimes HI. Then I started trying to fix it, but was having no luck. One day I took 150 units of insulin and nothing happened. I have since learned that when the BGs are that high, all the cells in the body become extremely insulin resistant, and the metabolism gets totally screwed up, and it's time for the ER.

But I didn't know that at the time, and I tried calling the local Diabetes Wellness Center for help, and all I got from them was a pamphlet on counting carbs. Then I went to my doc, with a fasting BG of 302 and an A1c of 10.1, and liver enzymes in the 100's (normal is below 40), and he had no suggestions and just sent me home. 6 days later, I didn't show up at a picnic, so my friends came looking for me, and found me near-comatose. They got me to the hospital and the doc there told them that if they hadn't found me, I would have been dead by morning. Obviously, I didn't die.

So the lesson learned, but not gratefully, is that yes, I have diabetes, and no, it's not going to go away while I'm not looking. In addition, I learned that yes, I'm dependent on insulin, and my CDE told me that for my own safety, I need to make sure that all medical professionals treat me as a Type 1, because while I was in the hospital, first they tried Type 2 protocols, and they didn't work. But the rest of you can call me Type Weird, just because I don't fit into the boxes. Except the big box that says "Diabetes". :-)

Writing style

Gonna do yesterday's prompt today, because I really don't have anything to pin up. I ain't a pin-up girl -- never was, and by now, never will be, LOL!!

So I'm going to talk about my writing style. I'm a reactive writer, which is why I'm doing so well with this prompt system. Ask me a question, and I'll write away. And while I do edit and consider my words, I'm a pretty much stream-of-thought, but fairly well-organized writer.

And I do think I have my own unique viewpoint, and things worth saying about health and diabetes. Other things, too, although I don't write about them as often.

But one of the things I'm discovering using this month of prompts is that I have a lot to say about myself, and one goal is to write about my journey of self-discovery after the month is over. That means it will be a little wider than diabetes itself -- I have things to say about mental health and emotional honesty, too. This may well turn off some people, but I think I need to be honest about myself and I don't find journaling helpful. But knowing that someone might actually read what I write is very motivating to me, and getting responses is even MORE motivating.

And I think that the moment that you stop learning about yourself and discovering new things is the moment you start to die, and I'm not ready for that yet.

My Dream Day

Another toughie. Again, for all of us with diabetes, it would have to be a day without it. What would we do differently if we didn't have diabetes?

It would be nice not to even think about it, as if I had never had it. Not to have to plan for what I'm going to eat, not care about food groups, just eat and enjoy the food, whatever it happens to be. Don't care how many carbs, don't care how much insulin, because it just doesn't matter.

Another part of my dream day would be not caring whether the food I eat is going to make me gain weight. Just eat what I like, in the amount I like and absolutely not care.

Exercise if I feel like it, doesn't matter what time, nor what the intensity is, nor for how long. None of that. And don't need to test before or after. And don't need to carry glucose tabs (which I HATE) because there is no danger of going low.

Nothing plugged into my belly. No buttons to press, because the pump is not there. 

Not pricking my fingers AT ALL. Diabetics DON'T love pricks.

Nothing else even matters. I don't care whether it's rainy or sunny or snowy (although I'd prefer not to have hurricanes, earthquakes or tornadoes), I don't care whether I'm up early, or sleeping in, reading a book or watching a movie, or even washing the dishes or doing the laundry.

But it would be nice to spend the day in the company of good friends, and to laugh and talk and enjoy ourselves, and my mind would be fully free to participate in the fun without that little diabetes demon clinging to the back of my brain muttering "my preciousssss" while trying to grab the part of my brain that really wants to be free!

10 things I couldn't live without

This ones' a kind of double-cross prompt, because as diabetics, we ALL could just list out diabetes supplies, and that would come out to more than ten things! If we were dropped on a desert island with nothing but our diabetes supplies, they would run out and we'd be dead soon thereafter, anyway.

So here are ten OTHER things I couldn't live without:
1. Shelter. I'm lucky, and have a house, but I KNOW that there are millions of people all over the world suffering because of lack of shelter.
2. Food. We in America are among the luckiest in history because we have a wide array of food available to us -- far more than we could grow locally, and we are not subject to local crop failures.
3. Clean water. In most places in the US, clean water is available at the turn of a tap. We don't remember how people died from cholera and other water-borne scourges because they couldn't get clean water.
4. Indoor plumbing. We here in the US live without having to endure the stench and inconvenience of outhouses, nor do we have to do the disagreeable job of emptying and cleaning chamber pots! We also have warm water on demand, so we can enjoy those soothing showers!
5. Refrigeration. Our food lasts longer and is less subject to contamination because we can keep it cool or even freeze it. We can have a glass of iced tea in the summer without even thinking about where that ice came from.
6. Electricity. While we could certainly conserve electricity, we would be very unhappy without our lights during the dark evenings of winter, not to speak of our music, computers, e-readers, microwaves and other electric appliances.
7. Education. What a pleasure to be able to read! By reading, we can communicate with the centuries, and it even makes our daily lives easier, like when we pin a note to our kindergartner's coat! And the vast majority of our jobs depend on the ability to read, write and do arithmetic.
8. The infrastructure. Almost everything we use is transported over roads, or by train, or even by airplane -- we would be in a mess in our large cities if the infrastructure didn't exist. That includes transportation to our jobs and to do our errands.
9. Medicine. For all that we Americans complain about our health care system, it's the system and not medicine itself that is the problem. As diabetics, we really NEED our insulin, but there are others just as dependent on other medications for other illnesses. And then there are the accidents and other sufferings that are not chronic, but still need care.
10. Each other. I saved that for last on purpose. I couldn't live without the people who have helped me, comforted me, loved me, and done things to make my life easier. And that includes my cats! LOL!

Stream of consciousness day

Well, this is a kind of follow-up to the blog I wrote about me.

I have finally come to the point of having enough strength to admit that I have problems with food, and the desire to do something about it. The picky eating, the diabetes, and the problems with both bingeing and starving myself make for a complex situation.

Right now, I am struggling with the fact that if I eat only a minimum, it's much easier to control my blood sugars. But when the minimum means one cup of milk in the morning, and a cup and a half of Greek yogurt in the afternoon, and frequently nothing else, that is really not a nutritionally complete diet.

I am considering going into an eating-disorders program which has a diabetes component. This means that the staff has dealt with diabetics before, which is comforting. On the other hand, they have never dealt with ME, unique zebra-creature that I am. And that is scary.

So I am looking at this huge step with a mixture of hope and trepidation. I am not a diabulimic teenager, and my health is stable, so I'm not in crisis, but still, I may have a couple of decades left in me, and my thinking mind says I should attempt to live them as healthily as possible.

One of my fears is the wide diversity of opinion as to what constitutes a healthy diet. I have considered all the sides that I have been able to discover, but in the end, I guess my picky eating and my diabetes have the final say. It might be healthy to eat walnuts, but I can't tolerate them, and it might be healthy to eat whole-grain bread and oatmeal, but my diabetes says no. And, like many, I fear weight gain -- I HAVE lost weight on my restricted eating, and while my weight is in the "normal" category, I'm certainly not thin.

So I plan to enter the program next week, but meanwhile, I'm living with a lot of anxiety, and my little devil eating-disorder friend is desperately trying to talk me out of it. And I'm just trying to hang on.

Dear 16-year-old me

It was a good year, but there are storm clouds brewing. You finally figured out how to get around your parents' strict food restrictions, and you're spending your lunch money on glazed doughnuts in the morning at school, and bingeing on $1.00 worth of candy bars (20 bars!) whenever you get your allowance money. Oh, my, that stuff tastes SO good!

But you're not eating very well -- your picky eating is preventing you from getting the nutrition available in many fruits and vegetables, and you have no idea how to circumvent that, because the only way your mother knows how to make vegetables is overcooked and mushy, which you can't stand. But you do love your mashed potatoes with lots of butter, and bread and butter!

So you don't know it, but you're setting yourself up for carb addiction, and when the diabetes hits, you will NOT be in a good place either nutritionally or emotionally. The very first thing the CDEs will do is send you to a dietitian, who will place you on a meal plan that you will absolutely abhor, and not be able to follow. So you will throw it to the wind, and you will NOT be doing your diabetes any good.

So I'd like to suggest that you try food, a little at a time, and when you're on your own, do more investigating about nutrition and work on body image and sense of self. This is hard to do without any support, and I don't know if you can find the support, but at least try. Don't be so hard into denial of your food issues, even before diabetes. It's a hard road, and you may have to travel it alone, but try.

OK, I have no idea if I did this right -- it wasn't very intuitive, but I did the best I could. In case it doesn't show up right, the prompt was to create a poster at the Keep Calm site, so I did. Not really very creative, but I'm actually just trying to keep my spirits up today.

I had a good/bad weekend -- enjoyed a lovely Passover seder on Saturday night, then a ladies' luncheon on Sunday, but with the clearly foreseen results that always happen when I actually eat "people" meals -- stubbornly high BGs that won't come down for hours and hours. And then, today, inexplicably feeling down and not ready to deal with the world. Wanna crawl in a hole and pull the cover over me. So you'll understand if I have nothing wise or wonderful to say today.

About me

Today's WEGO prompt was free writing. And I decided to write about something about myself.

The first thing that not many people know about me is that my grandmother had diabetes. When she was diagnosed in 1927 or 1928, insulin was commercially available, and so she was never at risk of dying, as she would have been just a few years earlier. And she was an adult at the time, just like I was at diagnosis.

She had young children in the house at the time, and my mother remembered coming home from school to find her lying on the couch with a wet rag on her forehead nearly every day. And that she would always eat puffed rice cereal in the afternoon. I wonder whether she was having hypos every day. The insulin available at the time was pretty crude, and pretty unpredictable, so it's not an unlikely scenario.

I also remember living with her for a short while when I was about three. I have a clear memory of the black bakelite case she kept her syringe in, and her boiling it on the stove, and her pulling up her dress to give herself a shot in the thigh. So my child mind made the association between shots and old people, and when I started to study diabetes seriously after my own diagnosis, it initially seemed weird to me that it was the children who needed the shots and that the older folks (T2s) could often use pills!

Because of my grandmother's struggles with diabetes, my family was terrified of the disease, and I was raised not being allowed to eat sugar or candy or chocolate or cake or cookies, because at the time (1950's) they believed that eating sugar caused diabetes (as well as tooth decay -- my father was a dentist). And I still have the admonition ringing in my head: "Natalie, don't eat that -- you'll get diabetes!" Not a nice thought to grow up with.

So when I was diagnosed, I was distraught, because in my head, all that I could think of was the voices saying "I told you so, I told you so!"

So having diabetes has always been a rocky road for me. I continually struggle with accepting the reality that I DO have it, and that it's NOT going to go away while I'm not looking. And that in truth, I CAN'T tolerate much in the way of sweets and carbs, which, because of my restrictive childhood diet, still seem like attractive forbidden fruits to me.

Every so often, I go into rebellion mode, and omit insulin, just to prove to myself that I really DO have diabetes. I know that this is not the healthiest behavior in the world, but it remains part of my emotional struggle. And for me, the emotional part is by far the most difficult part of living with diabetes.

Health Haikus

Today's prompt is health haikus. Well, at least American haikus, which are a totally different art form from the traditional Japanese haiku. I've shared American haikus with Japanese, and they just shake their heads and tell me that just because it's 5-7-5 doesn't mean it's a haiku. Well WE think it does! That amuses me! :-)

Anyway, here goes:

Pump infusion set.
Pop! goes the weasel into
My tender belly.

Blood sugar goes up
Blood sugar goes down, alas!
Not where I want it.

How many carbs does
That delicious looking plate
Of spaghetti have?

Insulin and carbs
Are not best friends and do not
Play well together.

Pup got a seagull
Kerri got a tall giraffe
Oh, what will I get?

(CGM users will understand this one!)

What's it like to eat
Thinking not at all about
Carbs and insulin?

Enough? :-)

Ekphrasis

First off, we have to define the word, because it's not a common one. The dictionary says that ekphrasis is a description or commentary on a visual image, and the WEGO prompt was to choose an image and then talk about how it relates to our health concern.

The title of this picture is "The Light Harvest", by Brad Wagner. And it made me think of a day with diabetes. Each little hanging flower is a point of time, and if we let them all pile up on us, we can so easily get overwhelmed. There is so much to do and so much to think about and process and figure out in the course of managing our disease.

But the young man in the picture is not focusing on all the flowers. He's focusing on just one, and appreciating it. I imagine that he could focus on the others, each in their own time, with the same degree of attention and love, but for now, it's just this one.

That's how it is with diabetes. Of course we will have to confront what the day brings us as it progresses, but for now, we need to deal with the present. If my blood sugar is high or low, then I need to deal with it NOW. It doesn't matter what else I want to be doing, the diabetes takes full priority.

This can be very annoying, and even dangerous, for example, when you have a low while driving. All the more reason to focus on just this moment, and do what needs to be done. And remember that, nuisance that it is, you do it because you DO want to focus on yourself and take care of yourself, and love yourself. It really boils down to love.

I don't love my diabetes, but I DO need to focus on it in order to love myself, just like the man in the picture.

Why I write about my health

Today's WEGO prompt is: I write about my health because...

Of a couple of reasons.

The first part is because, like many people with chronic health conditions, I have a lot of emotional issues surrounding my health. Journaling is not really helpful to me, but writing in the hope that at least someone will read it, and maybe even respond is what motivates me to keep on writing. And I haven't even begun to get into all the issues that bother me, even though I have had diabetes for 20 years. Everyone needs an emotional outlet, and I'm struggling to find mine, because I don't have much opportunity in my daily life.

The second part is that I'm naturally interested in science and medicine, and I read various blogs, newsletters, and journals and I want to share what I've learned. That means that I'm not writing about myself for the most part, because I don't fit into any of the diabetes boxes perfectly, but I want to share things that may be of value to others. I'm not a certified diabetes educator, and not eligible to become one, but that doesn't mean I can't contribute to the education of others.

I have come to have an interest in Type 2 diabetes and obesity, although I suffer from neither, because I feel like they are a very underserved population, and subject to a lot of scorn and shame and blame, and the more I read the scientific studies, the more I realize that it is not their fault, although there are things they can do to ameliorate the natural tendency toward Type 2 and obesity that they were born with. But in order to help people with Type 2, it is important to approach them with compassion and understanding, not to lecture them about what bad people they've been. So I guess I've cycled back to the beginning of my post, which is emotional support and caring. Yeah.

Superpowers

Today's WEGO Health Activist Writer's prompt is "Superpower Day. If you had a superpower – what would it be? How would you use it?"

And that's a toughie. I think I'll leave the leaping over tall building and being faster than a speeding bullet to Superman. And the spiderweb stuff to Spidey. But the problem is having to pick just one.

First off, I can't pick just one group of people to help and leave others in the dust. That's just too unfair.  So it has to be something that helps everyone. And if you look around, there are SO many problems in the world that need someone with a superpower to solve, it's hard to choose just one.

So, I think the superpower I would choose would be incredibly strong charisma. That means, the power to motivate people to work together and cooperate in peace in order to improve the world for everyone. To motivate people to limit and then reduce the population in order to solve our ecological problems. To motivate people to support and engage in scientific research in order to make chronic, incurable disease a thing of the past. To make it so that everyone has a decent start to life, and the opportunities that we Americans take for granted for a comfortable life. To get people to support human dignity at all stages of life, and to treat each other as family, so that no one is starving, or shivering on the cold streets of winter. And I could go on and on about it, but I won't! :-)

So now, I'm off to read the blogs of others who have answered this prompt -- maybe together, we can save the world?

Inspiration

Today's WEGO prompt asks us to "Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes."

Well, I'm going to be egotistical and use my own words.

"Blood is thicker than water, but water tastes better."

I should know, because, like many diabetics, I've licked my finger after testing. :-)

But my real reason for choosing this little aphorism is that without my friends, I would never have made it this far. I'm not going to name names for fear of leaving someone out, but you, my friends, know who you are.

When I was first struggling with whether I had diabetes or not -- the doctors and CDEs were giving me conflicting information and I was angry, bitter, confused, and in denial, there were the friends on misc.health.diabetes, as well as my best friend from Jr. High, who listened to my rants and encouraged me to do what was best for my health, whether or not I had diabetes, and plugged me into information sources, and did all the things that the medical professionals in their offices could never do. My family couldn't do that, either, because much as they loved me, they had no idea what I was going through, nor how to help. I was an emotional wreck, and these people, most of whom had never met me in person, listened to me and supported me and loved me anyway.

As the years went on, and I learned more about diabetes, my friends encouraged me to start taking a more active role in mentoring other people on the internet, which has also brought me great satisfaction and helped me learn even more by having to teach it.

I have always had a problem with food, body image and the bad press that T2 gets. And as time continued to pass (it always does), it became more and more apparent that I was NOT the classic T2. I hadn't responded to the sulfonylureas I was originally put on, and went on insulin 5 months after my diagnosis, but I was always troubled by questions as to what type of diabetes I had, and my REAL wish was for it to go away while I was not looking. Losing weight didn't help (but I was never obese to begin with), exercise didn't help, and eating low-carb didn't allow me to get off insulin, either. With the help of friends on TuDiabetes, I finally found my peace with my diabetes -- I found the courage to have my C-peptide tested (it turned out to be low), and I have come to accept that the diabetes will never go away, and it's NOT my fault!

When I binged myself into a coma in Sep. 2010, my friends came looking for me in the evening after I didn't show up for a picnic, and found me slipping into unconsciousness, and got me to the hospital. The doc there said if they hadn't found me, I would have been dead by morning. So, while I was in the hospital, in really bad shape, they took care of my cats, cleaned my house, dealt with the city wanting to fine me because the tree in my front yard was overgrown, and still found time to visit me in the hospital and phone me regularly.

And now, as I have finally admitted that I DO have a real problem with food, weight and body image, my old friends and my new friends are supporting me in the decision to get help for it. It is very painful for me to come clean about this truth -- my impulse is to appear to be the "perfect" diabetic, but I'm not. Not by a long stretch.

And finally, I have to mention Diabetes Advocates, who have graciously welcomed me into their midst, even though I am a beginner at diabetes advocacy, and a computer illiterate. I really feel I have to give back to all the beautiful people who have contributed so much to my life by paying it forward as best as I can.

You are beautiful people, all of you! :-)

Diabetes Time Capsule

Diabetes Old and New

Challenged by WEGO's suggestion to write a blog every day this month, I assembled my diabetes time capsule. And got out some of the stuff I haven't used in years, as well as some of the stuff I'm still using. For those who can't make out the picture (I'm a lousy photographer, LOL!) I have, left to right starting at the top:

1) glucose test strips
2) a sharps container
3) charger for CGM
4) a Medtronic CGM sensor
5) an old pump
6) a serter for the CGM sensor
7) bottle of insulin
8) my old Glucometer Elite, which I loved
9) a tubing stopper, from when you couldn't disconnect
10) an old lancet device
11) an old, first disconnectable infusion set, which had a tail that flopped around when you disconnected
12) syringe
13) directions for how to cope with ketoacidosis (what was that?)
14) old lancets
15) another old syringe, still in package
16) Sweetarts, for lows, in the old container that I used to carry them around in my purse
17) infusion set
18) serter for Quick Set
19) insulin pens which took cartridges. I rather liked the metal one.
20) ketone color chart

Stuff I left out (couldn't think of EVERYTHING!):
1) reservoir from pump
2) dressings to hold down infusion set and CGM
3) all the medical waste that went into the garbage when I tested, took a shot, or changed a pump or CGM site
4) all the blood I've shed (!)
5) all the food I've declined because of diabetes
6) all the time I've spent thinking about and doing diabetes tasks instead of doing what I enjoy.

Maybe it's those last three things that are the REAL challenge of diabetes!

Type 2's and diabetes education

I am old enough to remember Totie Fields. She had diabetes, and severe heart disease and blood clot problems, lost a leg and died of a pulmonary embolism. Heart and blood vessel disease are a very common cause of death among all diabetics.

Amputation is a great fear. What saddens me is when I see T2s who haven't even had the disease all that long losing limbs. T2 IS a treatable disease, and just as disabling and deadly as T1, but so many people deny that fact. When they say T1 is the BAD diabetes, they don't know what they're talking about, because ALL diabetes is bad. One of my friends with T2, maybe a little younger than me, recently lost a leg to diabetes, and it makes me want to cry because it shouldn't have had to happen.

It may be partly denial (oh, I only have mild diabetes) but it's also partly because the insurance companies don't want to cover diabetes education, which is just as essential for T2's as it is for T1's. My own insurance company granted me a lifetime education benefit of TA-DA! fifty dollars. Which I used up before I even completed my first appointment with a CDE. All I can say is, it's a good thing that I am an independent learner, and found diabetes sites on the internet, and asked a LOT of questions, and read a lot of books and articles (some of which were garbage). But most people don't have the ability or determination to do that, and don't have the background to be able to sort out the good information from the quacky stuff -- they just depend on their doctors, and what the insurance company will cover. T2 is one of the most poorly treated diseases in the world, because controlling ANY kind of diabetes is really thought and knowledge intensive. And requires MUCH support and education. And if insurance won't cover it, or won't cover it adequately, these people are just left to suffer and die.




Maybe if their doctors and CDEs and dietitians had more time to work with them, they would find them much more compliant than has been assumed. And maybe if they were taught to be self-empowered, they could become independent learners and managers of their diabetes and live longer and healthier lives.

Publicity for Type 1

I have mixed feelings about all the publicity given to young, handsome (or pretty), athletic T1's who are climbing mountains, winning road or running races playing basketball and football, or weight lifting, and being not only normal-looking, but super-healthy looking. I'm glad that T1 young people are doing this, but why is no one looking at all the effort it takes to get there? And why is no one looking at the people with complications who are STILL striving to make a good life for themselves? In some ways, this positive publicity may be motivating for youngsters with T1, but in another way, it's hiding the truth from them -- T1 is HARD, time-consuming and so far, life-long. Personally, I'm more interested in ads and info that motivate teens to take care of themselves, not into making them think that they can apparently effortlessly climb mountains, too!

Odd ducks, indeed

I wrote to a prominent endocrinologist about the need to consider the issue of differences in glycation, and this is what he replied:

that is true not only for diabetes or medicine, it's true for everything

the advantage of a doctor with experience is that she/he should be able to
look at most of the factors in a treatment and give an opinion

there are some differences in the glycation process from person to person but in reality
they tend to be small and outliers are rare 

 OK, so I'm rare! But you already knew that anyway -- just don't eat me that way. :-)

The difficulty in being rare, and this is not the only characteristic in which I fall off the curve, is that too many doctors then don't know what to do with you. Like I said before, my (former) endo ignored an A1c of 10.7 and FBG of 302 and liver enzymes above 100 and let me slip into a coma; my current APN had all kinds of excuses when I tried to tell her that I'm a low glycator, and can't be judged according to ordinary frameworks. So I end up feeling that I am the only one who can take care of my diabetes, and heaven forbid there is ever any kind of emergency.

Another characteristic I have is that one of my cardiac enzymes is permanently elevated, and can't be used to determine whether I have had a heart attack or not. When I had the spasm in 1992, my own cardiologist took me seriously, but another one who was covering simply told me that I had a panic attack. Huh? Wakened out of a deep sleep with incredible chest pain, cold sweating, rapid heartbeat, lightheadedness, shortness of breath, and nausea, and actually passing out, is a panic attack, when I never had one before and have never had one since?

I guess the point I must be trying to make is that docs need to watch out for us odd ducks because we DO exist, and if there is any doubt, then insurance bureaucrats be damned, go ahead and order the extra tests, just to be sure. If, when I first started showing elevated FBGs, an OGTT had been done, it would probably have shown that I was indeed developing diabetes, even though my A1c was low (4.8). It may or may not have made any difference in my treatment, but could have lifted a lot of worry and distress off my shoulders.

Medicine has been called an art and a science, but I'm concerned that all the emphasis on Evidence Based Medicine is robbing doctors of the chance to practice the art!

When I'm 64!

If you're old enough to remember the Beatles, you'll remember this song. One line went "Will ya still need me, will ya still feed me, when I'm 64?" So today being my 64th birthday, yesterday night, some friends took me out to dinner. Well, it was my birthday, right? So I had some Italian tomato cheese soup, a lovely filet mignon, a whole, big, baked potato, and some chocolate cake with ice cream for dessert. And enjoyed every bite of it. And paid the price, too!

First off, I do have problems with delayed stomach emptying, not from gastroparesis, but for other reasons. So it took me a good 12 hours to empty my stomach, and I basically had to sit up all night, and didn't do more than doze all night long. But the good part is that I kept my BG under 200 for the most part by frequent monitoring and frequent correcting. 

The first part went really well, because I had put on a square wave for 4 hours, but then when it wore off, I didn't know if I could predict what would come next, so I just decided to just test and correct. And then after thinking about it for a while, I started wondering why the maximum square wave is 8 hours, when it CAN take people longer, and sometimes a LOT longer to completely empty their stomachs. Apparently, totally normal people can empty their stomachs in 3-4 hours, but I surely can't be the only one who, without having gastroparesis, still has problems, especially among older people.

But anyway, the truth of the story is that I had a great time, enjoyed my friends, and was willing to pay the price which I knew ahead of time was coming. But I DON'T do this very often! :-)

Constitutional Religious Freedom for ALL

The argument that I have seen NOWHERE about the Republicans' effort to deny mandatory insurance coverage for women's reproductive health is this:

By giving my employer the right to deny benefits on the basis of HIS religious conscience, they are trying to deny me the right to health care according to MY religious conscience. I happen to be Jewish, and my religion is fine with contraception and early abortion. Letting the Catholic Bishops have their way amounts to favoritism toward one religion, and that seems to me to be clearly against the First Amendment.

Shifting the cost to insurers or the individuals themselves doesn't solve the problem, which is carve-outs for specific religions. Jehovah's Witness employers could use the same arguments to deny payment for blood transfusions, etc. etc. etc. and it leads to a slippery slope where the employer can actually determine whether an individual lives or dies.

So this is not only unconstitutional; it's WRONG!

New thoughts on A1c

I went to my APN on Tuesday, and my A1c was 6.3, up from 5.8 the previous time, and I personally know it was because I was depressed and bingeing part of the time, and I HATE to get praised for a great A1c when I KNOW it isn't. The medical profession has not yet figured out that some people are low glycators, even though there was a study on it many years ago, and for ME, a good A1c is under 6.0. The APN told me my A1c was wonderful, and poo-pooed my explanations to her as to why it wasn't. See this post http://www.blogger.com/blogger.g?blogID=1921328832838010683#editor/target=post; fopostID=5398758637352847997 for more of my thoughts. The APN's reaction just reinforces my knowledge that the only one who can care for my diabetes properly is ME, because no one else knows anything or cares. I'm always amazed when people say their endo told them their A1c was too high, or they were having too many peaks or lows, or whatever, because no one ever tells me ANYTHING! All they say is that I'm doing great. My former endo told me I was doing great right until I went into a coma. As my grandmother would have said, Pfeh!!!

Thin Type 2?

I am convinced that thin T2 is one of 3 things. It could be misdiagnosed LADA (Latent Autoimmune Diabetes in Adults, a slow-onset form of T1), which could be proved by getting antibody tests (not that expensive), or it could be undiagnosed MODY (Maturity Onset Diabetes of the Young -- a monogenetic form of diabetes, which is neither T1 nor T2), which can be diagnosed by a strong family history and by genetic testing, although that's pretty expensive, and is not common, or it's another disease which hasn't even been noticed or described by the medical field. This type would be antibody and genetically negative, and so far as I can tell, NOTHING is known about it.

I've taken to calling the third form Type Weird, because it's NOT classic T2, although it can affect people who are initially overweight (not usually obese?) but when they lose significant amounts of weight, they observe no improvement and sometimes worsening of their diabetes. T2 drugs sometimes work and sometimes don't, and insulin is often the best choice of treatment, but as usual, YMMV.

I personally have called myself Type Weird for years, because I'm CLEARLY not classic T1 OR T2, and I never had the testing necessary to confirm either LADA or MODY (and at this point, it's not worth it to me). I was on Glucotrol, a sulfonylurea for 5 months and it did absolutely nothing for me, and then I went on insulin and never looked back, so I never tried metformin or any of the others, and at this point refuse to do so, because I have enough GI problems as it is.

I had a coma in Sept. 2010, for various reasons, including major depression, bingeing on sweets, and not taking enough insulin (i.e. didn't omit it completely, but didn't take enough), and in the hospital, the T2 protocols didn't work for me at all, and my BG was going up instead of down. The CDE had to fight with the hospitalist to get him to use T1 protocols. (There's no such thing as Type Weird protocols!). Then I started getting better.

So, for reasons of safety, we decided that I should tell medical folks that I'm T1, because I need T1 treatment protocols, regardless of what else is going on medically. And in fact, my diabetes acts more like T1 than T2, and so I'm comfortable with the oversimplification, even though I KNOW it's not quite the whole picture. I truly don't fit precisely into any of the known boxes, so I decided to go for proper treatment, and not worry about labels. There are a LOT of different animals in the diabetes herd, even if the academics haven't figured that out yet.

Update on Wisdom Teeth!

Just to bring things back into perspective: After 2 days of doing absolutely nothing (and me thinking whew! home safe!), today my body decided to wake up, figured out that maybe something HAD happened, and tried to decide what to do about it!
The lowest part was 108, quite acceptable, but the high was 357. Then it decided to go down to 146, and immediately changed its mind and went up to 375 (not shown on picture, because it's still going up with 2 arrows). And it's 9 PM and I haven't had anything to eat since 1 PM. So I think I'm going to change my set and take a shot, but don't you think this is a TRIFLE ridiculous???? With my luck, I'll plunge myself into a low, but at the moment, I'm sort of nauseated, and that's a good reason to change my set as well. No one ever said this would be easy, did they???? And they never mentioned that I have diabetes, either, did they????

Getting wisdom teeth out -- when I'm 64!

Yeah, I know people are supposed to do this when they're around 20, but hey -- I didn't know any better!! LOL!! Actually, my wisdom teeth came in perfectly, and did their job for about 44 years, but I was starting to develop some gum disease and bone loss, and I've read in many places that diabetics need to be extra careful to take care of their mouths.

So, out they came. Now, what is the AVERAGE diabetic supposed to do with a procedure like that? Go high, maybe? NOOO! Just as soon as the dentists started giving me the anesthetic shots, I started to tremble -- my CGM showed 63 with a down arrow, and my meter showed 97. Then the dentist told me that there was epinephrine (adrenaline) in the shot, but knowing what was coming, I decided not to take the risk, and popped a couple of glucose tablets. I figured better safe than sorry. And adrenalin SHOULDN'T shove BG down, should it?

The procedure itself was weird -- my whole lower jaw was numb, and although my upper lip felt normal, the back of my upper must have been anesthetized pretty well, too. So I felt some wiggling and pressure, and then POP! out came the tooth. That's what really took me by surprise -- I almost jumped out of the chair. Repeat for 2 more teeth, and then the last one came out smooth as jelly.

Then, while I was waiting for a few minutes to make sure I was OK to go home, I checked my BG -- 149, well, OK. When I got home, checked it again, 76, and I couldn't get it over 100 for the rest of the day or night. Twice I went down into the 60's; that's OK, because that level is easily treatable -- but I'm mystified as to why, in spite of the epinephrine in the shot, and the fact that I WAS eating -- mostly milk tea and Greek yogurt, both of which ALWAYS raise me, my BG didn't act ANYTHING like I expected it to!

Hang on to your hats; Type Weird strikes again! :-)

Moaning and Groaning

I'm in a very low place emotionally, and that's when I just can't deal with diabetes. I WANT it to GO AWAY, and haven't managed to convince it to do so, even by almost killing myself!

What I HATE about diabetes: the constant preoccupation with food -- what to eat, when to eat, how much, nutrition content and meal composition, particularly carbs and protein, how long its likely to last in my belly before I get hungry again, watching my weight (not overweight, but don't want to get that way)

What's ANNOYING about diabetes: running out of insulin in my reservoir at inconvenient times or places, when I either don't want to, or CAN'T change it, sitting up most of the night trying to bring a high down, the horrible tangy orange flavor of glucose tablets (easier to carry around than juice), not KNOWING when a low is going to hit.

What's BORING about diabetes: explaining it over and over to people until their eyes glaze over, knowing that they probably aren't catching much of what I'm saying, having it on my mind all the time.

What's IRRITATING about diabetes: all the people who think they know more than I do, and all the ads that bounce up on the internet, and in magazines, and ESPECIALLY the one on the package of Medtronic CGM sensors showing a cute, young and slender girl about to dig into a HUGE piece of carrot cake -- when I know for a fact that that piece of cake would literally do me in.

What's BIPOLAR about diabetes: On the one hand, pictures and articles of young, fashionable, adorable young people who are artists and extreme athletes, etc. with the message that you can do anything (Nat Strand would never have made it in that race if she hadn't had a knowledgeable and capable teammate who saved her butt a couple of times), and all the admonitions about taking care of yourself perfectly or you're going to get horrible complications. Seems to me the truth is somewhere in the middle -- either diabetes is a piece of cake, or it isn't, and it seems to me, it isn't.

What's on FIRE about diabetes: it takes a continuous emotional toll on a person. For anyone who's really trying, it's not a pop-a-pill and forget it disease. Which results in burnout. Which I've seen more people than just me struggle with. Coupled with a dark fear that on the days when I REALLY don't behave myself, I might be doing myself permanent damage.

And what's WORST for me, is having no one in my life who would be there if I had an emergency. The fact that friends came looking for me and saved my life in 2010 was pure luck, and it HAS made me a little more careful, but I'm darn scared of this disease.

Can you relate?

Paula Deen

On Tue, 17 Jan 2012 20:15:16 -0000, someone wrote:
http://bites.today.msnbc.msn.com/_news/2012/01/17/10173727-paula-deen-diabetes-diagnosis-wont-change-how-i-cook

I've never been a fan of Paula Deen, but her comments/actions will insure that I will avoid her in the future.
________________________

Well, that article and the quotes that were attributed to her show a LOT of ignorance about T2 and probably a lot of denial, too.

The first thing that got my hackles up was the statement that a fatty diet and obesity CAUSE T2. We KNOW that these factors exacerbate the already-present susceptibility to T2, but saying that they CAUSE it loads unfair and unproductive guilt on all the prediabetic and full-blown T2s who work so hard to take care of themselves, and are fighting societal customs and an  environment that block them all the way.

Second, her flat-out refusal to consider the role of food in T2 control bespeaks denial, big time. That doesn't surprise me, because in this social and media environment, to admit that you have T2 is like admitting you are a psychopath. A perfect way to bring blame and shame down on your head, and for people to shun you and think you need to be "fixed".
So, yeah, she was born with the susceptibility to T2, and she did become obese, and she does love her fats and sweets, but all that tells me is that she needs all the support and encouragement we can give her to pull her out of denial, and help her understand the realities of T2 and that food IS a major issue. What she DOESN'T need is scorn and shunning.

Open letter to the AADE

The AADE is the American Association of Diabetes Educators. I just sent them this letter, but would like to invite your thoughts and reactions:

Dear people,

I joined AADE last year for the opportunity to attend the meeting in Las Vegas. As a long-time PWD and avid reader of literature on diabetes for both lay people and professionals, I was very excited and learned a lot.

My friend, Ann Williams, RN, MSN, CDE, PhD, and former chair of the Disabilities SIG and I have been talking for years about the concept of peer mentoring, and the ways in which experienced PWDs could contribute to the education of both the newly diagnosed, and those struggling with additional issues such as depression or complications. So I was very excited when I discovered your paper on Community Health Workers.

However, when I read the description of the Level 1 worker, it doesn't quite fit the concept I have been thinking about, and I would like to discuss the ramifications of expanding the concept.

As stated,
"Community health workers (Level 1 providers) are non-diabetes educators uniquely positioned to collaborate with diabetes educators and other providers to improve the quality of diabetes education, care, and prevention in communities. CHWs dedicated to diabetes prevention and care are likely to have completed specialized training. They can serve as bridges between their ethnic, cultural, or geographic communities and health care providers, and they engage their community to prevent diabetes and its complications through education, lifestyle change, self-management, and social support. CHWs also play a vital role in data gathering and data entry."

This is very exciting and forward-thinking as it stands, but I would like to suggest that there is one community, and one group of people who have been left out. Did you know that there is a thriving, thousands-strong Diabetes Online Community? Many, many people come online from all over the world, and from rural as well as urban areas to ask questions, discuss issues and thoughts, and follow research on diabetes, and there are dozens of people writing and blogging about life with diabetes, be it parents, Type 1's, Type 2's, caregivers, exercise specialists, CDE's, dietitians, etc. We are a community which is composed of people who may not have specialized or formal training in diabetes, per se, but have other skills (for example I spent 23 years as a high school teacher), and a LOT of experience living with diabetes and educating ourselves about it. We are, as in your definition, dedicated to diabetes prevention and care. Our community is neither ethnic, cultural nor geographic, but we do exactly what you talk about in terms of education (but NOT medical advice), lifestyle change, self-management and social support.

We are concerned about medical misinformation, just as medical professionals are, and we are very interested in helping guide PWDs toward appropriate medical care, just as you are, and I think we should be included in your definition of the Level 1 provider. As certified Level 1 providers, we would have some authority to distinguish our answers from the quackery that DOES pop up on our sites from time to time.


I know there are a couple of provisos to this idea, which actually apply to anyone who would wish to be certified at that level. The first is that there needs to be the opportunity for testing to determine level of knowledge. The second is the necessity to very clearly spell out ethical boundaries, such as knowing what questions I, as a Level 1 provider, could answer, and which need to be referred to a medical professional. For example, a question that I feel very comfortable answering is "Where do you put your pump when you sleep?" whereas when a person says "I'm throwing up and can't hold anything down" I would recommend that they immediately consult their CDE or doctor. People OFTEN come to us before consulting a doctor, and we are in a very good position to guide them toward getting appropriate care.


I would like to invite you to consider working with us to strengthen and give parameters to this kind of diabetes education, which is already occurring, but which needs your professional support. I also think that we have much to contribute to the discussion about what constitutes good diabetes care from OUR perspective, as PWDs and having interacted with literally thousands of people.

I appreciate your attention.

Natalie A. Sera

More thoughts on obesity

I read an article on MedPage Today, in which a scientist named Richard Kahn stated that weight loss programs didn't work, in stark contrast to most people in the field think they do, and Medicare is all set to spend millions of dollars on weight loss programs.

It was disheartening to see in the responses all the myths that people believe to be fact.

The first one is that obesity causes diabetes. But when 33.8% of Americans are obese, and only 8% have ALL kinds of diabetes, that's patently not true, and Type 2 diabetes needs to be clearly differentiated from obesity.

Second, not enough is known about what causes obesity. Scientists are just beginning to discover the interactions between brain, gut and adipose tissue hormones that regulate appetite, BMR and calorie disposition. There may be other factors as yet unknown. So this attitude that one size fits all as far as diet and exercise is simply mistaken, as is the assumption that obese people got that way because they sat on the couch and gorged on Twinkies. Obesity certainly occurs in the presence of overnutrition, but people can get fat on so-called "healthy foods" just as easily as on junk food if that's how their metabolism works. So MUCH more work needs to be done on metabolic, genetic and epigenetic influences on obesity instead of the finger-pointing that is so rampant in the media and the medical profession.

Third, there is no reliable research showing that anything but morbid obesity actually damages health and longevity. In people over 65, those who fall in the "overweight" category have lower mortality rates than those who fall in the "normal" category. So we need better research on appropriate weights for different ages, instead of trying to advocate that everyone be shaped like a teenager.

Please, more research, and more thoughtful discussion instead of hysteria and old-wives tales!