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!
Saturday, April 28, 2012
Sunday, April 22, 2012
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!
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!
Wednesday, April 18, 2012
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". :-)
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". :-)
Monday, April 16, 2012
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.
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.
Saturday, April 14, 2012
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!
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!
Friday, April 13, 2012
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!
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!
Thursday, April 12, 2012
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.
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.
Tuesday, April 10, 2012
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.
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.
Monday, April 9, 2012
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.
Saturday, April 7, 2012
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.
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.
Friday, April 6, 2012
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? :-)
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? :-)
Thursday, April 5, 2012
Ekphrasis
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.
Wednesday, April 4, 2012
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.
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.
Tuesday, April 3, 2012
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?
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?
Monday, April 2, 2012
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! :-)
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! :-)
Sunday, April 1, 2012
Diabetes Time Capsule
 |
| Diabetes Old and New |
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!
Subscribe to:
Posts (Atom)