A friend of mine posted about the fact that people with Type 2 often asked him for help in how to improve their self-care, stating that they had trouble taking their medications, or managing their meal plan, or testing their blood sugar. He, being a Type 1 since childhood, was at a loss as to what to say to them, because he felt that it wasn't his place to recommend counseling, and he really couldn't address the problems of Type 2. So this is what I wrote as an answer:
I think the most important thing you can do is tell them you empathize with what they're going through. Even if you don't actually understand it, because you don't remember life before diabetes. They're being asked to make HUGE life changes, and it's SO hard I can't tell you. Because I was diagnosed in my early 40's, I DO remember life before diabetes, and I DO understand what an emotional struggle it is.
When I hear young T1s sneer at T2s because they think they have it easy, I know it's actually because they don't have a clue what the T2s are going through, and they are too young and callow to have any kind of empathy. But we older people are capable of understanding that they are struggling, even if we never had the exact same struggle. And validating their feelings is really the first step in helping them see the need for counseling, and for taking the steps they need to take in order to protect their health and their future.
Docs don't usually give them that validation, and neither does the general public; on the contrary, they devalue them and play the blame and shame game with them, and then wonder why they don't take care of themselves. Maybe because they've been made to feel so bad? Or because they start thinking it's hopeless? We, as a society, are very cruel and thoughtless toward T2s and part of the struggle for everyone who makes it their goal to truly understand all types of diabetes should be to lift the shame and gather together under one umbrella for the support of everyone.
Tuesday, August 20, 2013
Wednesday, August 7, 2013
Stereotypes
I've been doing some thinking lately about stereotypes of diabetes. I expect the general media to propagate stereotypes, because most of the writers have only a general knowledge of diabetes, and most of the time, they're writing about people with T2 who fall under the hump of the bell curve.
But as I pay more attention to ads from the JDRF (Juvenile Diabetes Research Foundation) and manufacturers of products for people with diabetes, I think they're doing just as much harm. I'm looking at it from a couple of angles, so let me approach T1 first.
First off, it seems to me that these organizations present T1 diabetes as a young person's disease. There is a great emphasis on children, probably because the ads, especially ads for insulin and other diabetes supplies, but also JDRF ads target parents of T1 children. And as such, the message seems to be "You're normal! You can do anything!" But what's left out is "If you are careful and diligent about managing your diabetes." These parents know, better than anyone else, how difficult it is to manage diabetes in a young, growing child, and they've seen hypoglycemia at its worst, and DKA (diabetic ketoacidosis), and yet the advertising of the JDRF doesn't reflect how much work and worry goes into raising a child with diabetes. I understand that parents don't want their child to grow up feeling impaired, or feeling disabled, but the reality is still there, and although adults with T1 DO achieve many great things, no one who has experienced T1 can deny that there is a cost to their achievements that non-diabetics don't have to pay.
The second thing that I notice about publicity from the JDRF is that they almost always seem to depict children or young, slender, attractive adults engaged in athletics. But that is not a real picture for many people with T1. There are obese T1s and intellectual T1s and older T1s and disabled T1s, etc. We aren't all young people on bicycles. Some of us would much rather be reading a book, or shopping with our friends, or doing woodworking. So, in sum, I would like to see much more diversity in the ads put out by the JDRF.
Now let me go on to the depiction of people with T2. Many of the ads I've seen depict an attractive, slender, gray-haired person or and older couple with a small child. Or an attractive "young-old" couple on bicycles. A few have shown larger people, but not people whom anyone would perceive as obese. Again, I think it's demeaning not to show people in their true diversity -- attractive and well-dressed are good things, but what about a lovely, truly obese woman or a handsome obese man? How about showing a variety of ages and NOT including a cute 3-year-old?
I'm pretty sure I'm going to get some negative responses to this post, which is actually OK with me, because what I want is for people to think about how we're being manipulated by the power interests, and what life around us is really like. Just like I'd love to see a clothes model who looked like me, I'd love to see diabetes depicted as it really is, not like it might be in some imaginary fairyland where we're all rich, slim, famous, and don't struggle for a minute.
But as I pay more attention to ads from the JDRF (Juvenile Diabetes Research Foundation) and manufacturers of products for people with diabetes, I think they're doing just as much harm. I'm looking at it from a couple of angles, so let me approach T1 first.
First off, it seems to me that these organizations present T1 diabetes as a young person's disease. There is a great emphasis on children, probably because the ads, especially ads for insulin and other diabetes supplies, but also JDRF ads target parents of T1 children. And as such, the message seems to be "You're normal! You can do anything!" But what's left out is "If you are careful and diligent about managing your diabetes." These parents know, better than anyone else, how difficult it is to manage diabetes in a young, growing child, and they've seen hypoglycemia at its worst, and DKA (diabetic ketoacidosis), and yet the advertising of the JDRF doesn't reflect how much work and worry goes into raising a child with diabetes. I understand that parents don't want their child to grow up feeling impaired, or feeling disabled, but the reality is still there, and although adults with T1 DO achieve many great things, no one who has experienced T1 can deny that there is a cost to their achievements that non-diabetics don't have to pay.
The second thing that I notice about publicity from the JDRF is that they almost always seem to depict children or young, slender, attractive adults engaged in athletics. But that is not a real picture for many people with T1. There are obese T1s and intellectual T1s and older T1s and disabled T1s, etc. We aren't all young people on bicycles. Some of us would much rather be reading a book, or shopping with our friends, or doing woodworking. So, in sum, I would like to see much more diversity in the ads put out by the JDRF.
Now let me go on to the depiction of people with T2. Many of the ads I've seen depict an attractive, slender, gray-haired person or and older couple with a small child. Or an attractive "young-old" couple on bicycles. A few have shown larger people, but not people whom anyone would perceive as obese. Again, I think it's demeaning not to show people in their true diversity -- attractive and well-dressed are good things, but what about a lovely, truly obese woman or a handsome obese man? How about showing a variety of ages and NOT including a cute 3-year-old?
I'm pretty sure I'm going to get some negative responses to this post, which is actually OK with me, because what I want is for people to think about how we're being manipulated by the power interests, and what life around us is really like. Just like I'd love to see a clothes model who looked like me, I'd love to see diabetes depicted as it really is, not like it might be in some imaginary fairyland where we're all rich, slim, famous, and don't struggle for a minute.
Friday, July 19, 2013
My Therapy Dog
This is Inge. As you can tell, she's just a puppy now, and I'm going to go pick her up next week. Many of you know that I already have cats, whom I love to pieces, and I thought long and hard about getting a dog, even one as cute as Inge is.
But the more I thought about it, the more I realized that having a dog will be good for me. Of course, I'm aware that as a baby, she will require a lot of care and training, and I'm reading up at length about what items I will need to take care of her, and what her training needs will be. I've also taken steps to make sure the cats have safe places to be dog-free, and that she will not be able to get into their food dishes or litter boxes.
But here's what she's going to do for me: she's going to take me for walks. Since she will always be little, I won't have to go galloping after her, and she won't need to go 10 miles at a time, but she will walk at a nice pace around the block a time or two when she's fully grown, and I will go with her. Or we'll go to a park and walk around the park (there is a nice one not too far from me). I also have a yard, and we can play fetch in the yard, and I will be able to get some sunshine to boost my levels of vitamin D. In the summer, we will go in the cool of the morning or evening, and in the winter, we'll go in the middle of the day, when it's warmest. It will be good for me, because I have a hard time motivating myself to walk on my own, but having a little pal to walk with will make all the difference, because I feel very responsible for my animals. Knowing that she needs the exercise and will be eager to go will motivate me in a way that I haven't been able to do for myself. Thus the concept of Inge as therapy dog.
And best of all, she'll reward me with cuddles when I need them. I think it will be a good deal for both of us! :-)
Tuesday, July 2, 2013
Evaluating studies from a patient perspective
I just read a report about a study which said that major weight loss had no effect on cardiovascular disease in T2s, but of course, they should lose weight anyway. That kind of qualifier seems to be required in studies that show results contrary to received knowledge. Why couldn't they have just said weight loss had no effect on CV disease in T2s, and skipped the part about weight loss?
I think this involves assessing just what the relationship between doctor and patient should be. For example, a hypothetical patient with T2 might have metabolic syndrome adequately controlled by meds, no other comorbid conditions, and not be able to lose weight. So his CV risk factors are being controlled and there is no reason I can see to nag him to lose weight.
Another article I saw found no fault with a doctor publicly stating NJ governor Chris Christie was too morbidly obese to be president (not advocating any personal political stance here), because of his risk for CV disease. But, in fact, she knows nothing about his personal risk factors, and I think she had no business calling him out on it. Not to speak of the fact that other presidential candidates have had high-risk health problems, too.
Then there is the study in another thread about carb counting in T1s. Our overwhelming consensus on TuDiabetes (http://www.tudiabetes.org) is that it does help, even though the study concluded that there is no difference from "usual care", whatever that means.
So what is perturbing to me is that these kind of studies and opinions devalue the insights of the person into their own health status, as if we were totally unaware of our health risks and what we want to prioritize. They talk about involving patients in their own care, but then dismiss our experiences and wisdom.
I think this is a major way in which medical care needs to evolve.
I think this involves assessing just what the relationship between doctor and patient should be. For example, a hypothetical patient with T2 might have metabolic syndrome adequately controlled by meds, no other comorbid conditions, and not be able to lose weight. So his CV risk factors are being controlled and there is no reason I can see to nag him to lose weight.
Another article I saw found no fault with a doctor publicly stating NJ governor Chris Christie was too morbidly obese to be president (not advocating any personal political stance here), because of his risk for CV disease. But, in fact, she knows nothing about his personal risk factors, and I think she had no business calling him out on it. Not to speak of the fact that other presidential candidates have had high-risk health problems, too.
Then there is the study in another thread about carb counting in T1s. Our overwhelming consensus on TuDiabetes (http://www.tudiabetes.org) is that it does help, even though the study concluded that there is no difference from "usual care", whatever that means.
So what is perturbing to me is that these kind of studies and opinions devalue the insights of the person into their own health status, as if we were totally unaware of our health risks and what we want to prioritize. They talk about involving patients in their own care, but then dismiss our experiences and wisdom.
I think this is a major way in which medical care needs to evolve.
Tuesday, June 18, 2013
Bingeing
I'm a world champion sweets craver, and am still fighting the binge war (and sometimes losing), and I have found that the most important thing that I can do for myself is portion it out. I used to eat straight from the ice cream carton, or have the whole cake on a dish in front of me, or the whole package of cookies, and that only encouraged extreme overeating. And feeling really icky afterward, and struggling with blood sugars for many hours because of slow stomach emptying. So I'm working on serving myself out a reasonable sized portion, and then putting the rest AWAY. As in out of sight. But then, I'm an out of sight, out of my mind person! But really, if I don't see it, it's not nearly so much of a temptation as when it's right in front of me.
Yesterday, I tried to eat reasonably all day, with protein, fruit, vegetables and bread, but I was NOT satisfied. Not satiated. And all I could think of was sweets. So I went out and bought a half gallon of ice cream, and brought it home. And portioned it in a medium-size dish and ate it. It DID satisfy me, but the real victory was eating it and then STOPPING. I had enough, and did not need to go get a second serving, although I had given myself permission to do that. And I was able to control my blood sugar within reasonable limits, too, even if not perfect.
Also, I am a bit thinner, not that it shows, but my size is appropriate for my age (which is a body image issue I'm working on). I think that's the hardest part of all this. When I see all the beautiful young women who think they're fat, it drives me crazy, because they're NOT. They just have distorted body image. But that distorted body image is SO hard to change, and I do understand that it is stressful for them to have gone up in size when they start eating appropriately. But size does NOT define beauty -- and I think we should put that on our mirrors to look at every day. And eating appropriately, INCLUDING a little bit of sweets is appropriate. :-)
Yesterday, I tried to eat reasonably all day, with protein, fruit, vegetables and bread, but I was NOT satisfied. Not satiated. And all I could think of was sweets. So I went out and bought a half gallon of ice cream, and brought it home. And portioned it in a medium-size dish and ate it. It DID satisfy me, but the real victory was eating it and then STOPPING. I had enough, and did not need to go get a second serving, although I had given myself permission to do that. And I was able to control my blood sugar within reasonable limits, too, even if not perfect.
Also, I am a bit thinner, not that it shows, but my size is appropriate for my age (which is a body image issue I'm working on). I think that's the hardest part of all this. When I see all the beautiful young women who think they're fat, it drives me crazy, because they're NOT. They just have distorted body image. But that distorted body image is SO hard to change, and I do understand that it is stressful for them to have gone up in size when they start eating appropriately. But size does NOT define beauty -- and I think we should put that on our mirrors to look at every day. And eating appropriately, INCLUDING a little bit of sweets is appropriate. :-)
Tuesday, May 21, 2013
Awareness
Bob Pedersen, over at T Minus Two http://tminustwo.net, posted a thoughtful essay on awareness, using asthma as an example. It's definitely worth a read.
I have a couple of thoughts on awareness, too. The first is, that healthy people need to become aware that others are struggling with diseases and disabilities that are invisible.
We, as a society, have indeed, made some progress on making buildings more accessible to those in wheelchairs, for example. I remember seeing a lot of ads a long time ago, showing a person in a wheelchair sitting there, looking at a flight of stairs, which is an immediate and visual way of communicating the problem.
An asthmatic with an inhaler is also very visual, and an ad of someone gasping desperately for breath would be very easily understood as well. People with asthma can and do participate in sports (some people's asthma is triggered by exertion) by using the appropriate meds, (Jackie Joyner Kersee is the star example), but still, it can be life-threatening, and they are faced with the same double-sided sword as we are -- do you portray them as capable of doing what everyone else can do? Or do you portray them as suffering and taking meds for a life-threatening condition? Or, third option, do you take the forethought to portray what they are doing successfully, but clearly include the things they have to do to keep themselves alive and comfortable? And the balancing act between current and future side effects, and being comfortable now?
Can you see the parallels between asthma and diabetes? If the public were aware of how much work those successful athletes and celebrities put into controlling their diabetes while appearing "normal" during their performances, there might be more awareness of the struggle. It would also be nice to see people with diabetes who are doing impressive things in spite of complications. I think that would be a good way to let the public see both sides of the diabetes story -- the very real successes and interesting lives that people with diabetes live, and the efforts and work and difficulties that accompany them.
And of course, with diabetes, the awareness needs to include knowing the signs and symptoms of onset, and for those who are diagnosed, learning how to manage it successfully, but that's kind of another topic.
I have a couple of thoughts on awareness, too. The first is, that healthy people need to become aware that others are struggling with diseases and disabilities that are invisible.
We, as a society, have indeed, made some progress on making buildings more accessible to those in wheelchairs, for example. I remember seeing a lot of ads a long time ago, showing a person in a wheelchair sitting there, looking at a flight of stairs, which is an immediate and visual way of communicating the problem.
An asthmatic with an inhaler is also very visual, and an ad of someone gasping desperately for breath would be very easily understood as well. People with asthma can and do participate in sports (some people's asthma is triggered by exertion) by using the appropriate meds, (Jackie Joyner Kersee is the star example), but still, it can be life-threatening, and they are faced with the same double-sided sword as we are -- do you portray them as capable of doing what everyone else can do? Or do you portray them as suffering and taking meds for a life-threatening condition? Or, third option, do you take the forethought to portray what they are doing successfully, but clearly include the things they have to do to keep themselves alive and comfortable? And the balancing act between current and future side effects, and being comfortable now?
Can you see the parallels between asthma and diabetes? If the public were aware of how much work those successful athletes and celebrities put into controlling their diabetes while appearing "normal" during their performances, there might be more awareness of the struggle. It would also be nice to see people with diabetes who are doing impressive things in spite of complications. I think that would be a good way to let the public see both sides of the diabetes story -- the very real successes and interesting lives that people with diabetes live, and the efforts and work and difficulties that accompany them.
And of course, with diabetes, the awareness needs to include knowing the signs and symptoms of onset, and for those who are diagnosed, learning how to manage it successfully, but that's kind of another topic.
Saturday, May 18, 2013
Coping with an eating disorder in time of stress
Well, one of my dearest friends has been near death for 2 weeks, and I responded as usual, by manipulating food and insulin, which I know is not the world's best way of coping with grief and worry. So I asked my psychiatrist to increase my antidepressant AND I talked to Lorraine, the dietitian/therapist about the fact that all I could find comfort in was either bingeing or overdoing the sleeping pills. Again, not the world's best way of coping. So we decided that it might be a good idea if I went back and attended some of the groups at CFH. And made a commitment to eat something 3 times a day, even if it's not a "balanced" meal, which I sometimes just can't face. Starting on Monday.
So the good news is that my friend miraculously came out of her coma last Tuesday -- it was NOT expected by the doctors, who had been advising the family to pull the plug. She is weak and being taken care of in a nursing home, but at least it means that I get a little more time with her -- not going to lose her just yet.
So I've been on an emotional rollercoaster, and now that I've come down from the euphoria of knowing that my friend has survived, I realize that I'm on a downward spiral again, and even though I don't like groups, maybe it will help me get back on track again. Because I know I'm doing behaviors that aren't quite right. Like, yeah, I've been eating 3 times a day, but keeping the portions small, and sometimes just a piece of fruit and a cup of tea or coffee. And by that time, I'm full. And I don't WANT to eat any more than that.
So I'm going to have to do some work on portion sizes and meal composition and variety, because I find those very difficult. But at least I'm in a place I can work on them, now that the worry about my friend has been lifted.
So the good news is that my friend miraculously came out of her coma last Tuesday -- it was NOT expected by the doctors, who had been advising the family to pull the plug. She is weak and being taken care of in a nursing home, but at least it means that I get a little more time with her -- not going to lose her just yet.
So I've been on an emotional rollercoaster, and now that I've come down from the euphoria of knowing that my friend has survived, I realize that I'm on a downward spiral again, and even though I don't like groups, maybe it will help me get back on track again. Because I know I'm doing behaviors that aren't quite right. Like, yeah, I've been eating 3 times a day, but keeping the portions small, and sometimes just a piece of fruit and a cup of tea or coffee. And by that time, I'm full. And I don't WANT to eat any more than that.
So I'm going to have to do some work on portion sizes and meal composition and variety, because I find those very difficult. But at least I'm in a place I can work on them, now that the worry about my friend has been lifted.
Thursday, May 16, 2013
Don't be a doormat
It is unfortunate to have T1 diabetes -- I wouldn't wish it on ANYONE, but there it is. So, since our bodies aren't making insulin, then the insulin we take is what will help us be healthy and happy, just what we pretty much all wish for. While it will never stop being a nuisance (for me, the biggest obstacle is always having to be aware of the carb counts for what I eat), it's really only a small part of life, if you think about it. Many people have lived long, healthy, successful lives with T1 and you can, too. For me, it's just accepting that I have it, and it won't go away, no matter how much I wish it would, and my BG numbers will never be perfect, so, OK, fine. The second part is that my family told me I was fat as a child, which I wasn't (it's just that my sister was skin-and-bones thin), and my mantra, every day, and every time I think of it, is I'm NOT fat, and I DIDN'T cause my diabetes. I'm guessing that pretty much everyone, not just diabetics, needs to remember that humans come in a variety of body shapes, and if stupid people make ignorant remarks, it's your right to REJECT those remarks, and remind yourself of the truth. I sometimes wish that young people, especially teenagers, had the knowledge and self-confidence to simply say, "LIAR" when someone tells them how they should manage their diabetes, or how much insulin they should be taking, or what they should or should not be eating. Because we have to FIGHT against the people who are trying so hard to undermine us while thinking they are being helpful. Educate the ones who can be educated, and abandon those who can't. Or set a boundary, like "I won't talk with you about that." Because in the end, you can be healthy, and you can take control of your own life and emotions, if you don't let other people treat you like a doormat.
Monday, April 15, 2013
Name changes for T1 and T2?
There is a petition being circulated by 2 moms of children with T1 advocating for a name change for the two types of diabetes. The URL is http://www.change.org/petitions/revise-names-of-type-1-2-diabetes-to-reflect-the-nature-of-each-disease
I read the petition in its entirety, but I still disagree with it. Let me see if I can be organized about my reaction:
1. Dangers to T1 children are not caused by misconceptions about diabetes having been caused by the media attention to T2, but rather by ignorance about diabetes altogether. For example, T2s can and do have pass-out lows if they are on medication.
2. T2s frequently end up on insulin, because they DO experience beta-cell death, and this causes them to have all the same kinds of hassles that T1s have.
3. Care for anyone with diabetes depends on their personal needs, not an academically convenient type. Some people with T2 do not respond to oral meds, or have adverse reactions to them and go on insulin fairly soon after diagnosis, while some T1s develop insulin resistance and become obese during adult life, and doctors are increasingly using oral meds in addition to insulin in order to take care of them adequately.
4. There are more types than just T1 and T2. The fact that scientists have yet to discover exactly what is happening in the garbage-can diagnosis that currently constitutes T2 doesn't mean that they are all homogeneous. Plus there are other types such as gestational diabetes, ketosis-prone T2 (which is ALSO called idiopathic T1), stiff-man syndrome, thin T2, LADA, etc. etc. etc. Diabetes is actually a spectrum disorder, not an either/or.
5. MOST of the dissension between the "two" diabetes communities comes from parents and young people who react negatively to media presentations which discuss T2 without being specific. We, at Diabetes Advocates, work to educate the media -- all it takes is adding the words Type 2 to their presentations in order to educate people correctly. We feel that this would be a better solution than trying to change names.
6. Most T2s feel very denigrated and stigmatized by organizations and people who focus SO hard on T1 and don't have the time of day for T2. Organizations, as opposed to the media, almost exclusively focus on "the cure" for T1. T2 doesn't matter. The media articles are hard enough on them, and they need the support of T1s, not being thrown out into that stinky, discriminatory T2 garbage can.
7. Jeffrey Brewer, president of JDRF, IS trying to include adults with T1 into JDRF activities, but it hasn't had much effect. As a LADA, diagnosed at the age of 45, I feel very left out of the child/family-oriented T1 activities, but ALSO the diet and exercise activities aimed at T2. I feel very much like an orphan, and I want inclusion, not exclusion. Your division of diabetes into 2 types leaves a lot of us completely out, especially when we DON'T fit into the convenient etiologies which may change tomorrow. I was never a child with diabetes, and am not a person whom diet and exercise will help. I tried that, and it turned into a full-blown eating disorder, because I was trying so hard to fit into a box. It was like, if I could get thin enough, then I could accept that I had T1, and not T2. I lost weight, but it didn't work.
There is another thoughtful blog on this issue at http://www.thebuttercompartment.com which is written by Lee Ann Thill.
OK, this has turned into a rant, but the conclusion is that a name change will NOT help the greater diabetes community in any way, but more understanding from people concerned with one type for people of multiple other types would go along way toward gathering our strength to not only fight for a cure (which would only be for T1), but also help people live with the vastly difficult emotional burden that diabetes imposes on all people affected by it.
I read the petition in its entirety, but I still disagree with it. Let me see if I can be organized about my reaction:
1. Dangers to T1 children are not caused by misconceptions about diabetes having been caused by the media attention to T2, but rather by ignorance about diabetes altogether. For example, T2s can and do have pass-out lows if they are on medication.
2. T2s frequently end up on insulin, because they DO experience beta-cell death, and this causes them to have all the same kinds of hassles that T1s have.
3. Care for anyone with diabetes depends on their personal needs, not an academically convenient type. Some people with T2 do not respond to oral meds, or have adverse reactions to them and go on insulin fairly soon after diagnosis, while some T1s develop insulin resistance and become obese during adult life, and doctors are increasingly using oral meds in addition to insulin in order to take care of them adequately.
4. There are more types than just T1 and T2. The fact that scientists have yet to discover exactly what is happening in the garbage-can diagnosis that currently constitutes T2 doesn't mean that they are all homogeneous. Plus there are other types such as gestational diabetes, ketosis-prone T2 (which is ALSO called idiopathic T1), stiff-man syndrome, thin T2, LADA, etc. etc. etc. Diabetes is actually a spectrum disorder, not an either/or.
5. MOST of the dissension between the "two" diabetes communities comes from parents and young people who react negatively to media presentations which discuss T2 without being specific. We, at Diabetes Advocates, work to educate the media -- all it takes is adding the words Type 2 to their presentations in order to educate people correctly. We feel that this would be a better solution than trying to change names.
6. Most T2s feel very denigrated and stigmatized by organizations and people who focus SO hard on T1 and don't have the time of day for T2. Organizations, as opposed to the media, almost exclusively focus on "the cure" for T1. T2 doesn't matter. The media articles are hard enough on them, and they need the support of T1s, not being thrown out into that stinky, discriminatory T2 garbage can.
7. Jeffrey Brewer, president of JDRF, IS trying to include adults with T1 into JDRF activities, but it hasn't had much effect. As a LADA, diagnosed at the age of 45, I feel very left out of the child/family-oriented T1 activities, but ALSO the diet and exercise activities aimed at T2. I feel very much like an orphan, and I want inclusion, not exclusion. Your division of diabetes into 2 types leaves a lot of us completely out, especially when we DON'T fit into the convenient etiologies which may change tomorrow. I was never a child with diabetes, and am not a person whom diet and exercise will help. I tried that, and it turned into a full-blown eating disorder, because I was trying so hard to fit into a box. It was like, if I could get thin enough, then I could accept that I had T1, and not T2. I lost weight, but it didn't work.
There is another thoughtful blog on this issue at http://www.thebuttercompartment.com which is written by Lee Ann Thill.
OK, this has turned into a rant, but the conclusion is that a name change will NOT help the greater diabetes community in any way, but more understanding from people concerned with one type for people of multiple other types would go along way toward gathering our strength to not only fight for a cure (which would only be for T1), but also help people live with the vastly difficult emotional burden that diabetes imposes on all people affected by it.
Friday, March 15, 2013
Relationships
Parents come and go. Children come and go. Partners can come and go as well. The only person who will ALWAYS be with you is yourself. If you're lucky a special friend or two. But for the most part, the people who surround you are like the seasons -- they stay for a while, and then they're gone, for whatever reason -- it isn't usually because they dislike you, but because life sends us on our separate journeys.
I'm visualizing a rock in a stream. The water molecules each pass the rock, and caress it, but then they leave. There are always water molecules, but they are never the same. Some are nearer and some are farther, some pass by quickly, and some eddy around the rock for a time. But at some point, they always leave.
So loving ourselves is what we have to do first, even though it may be harder for us than for people who haven't had our struggles. Once we love ourselves fully, then we can truly commit to loving other people, and give them the love they deserve for the time they spend in our lives. Always aware that nothing is eternal, and always aware that we can love powerfully in THIS moment, and then forever, even if we never meet again.
I'm visualizing a rock in a stream. The water molecules each pass the rock, and caress it, but then they leave. There are always water molecules, but they are never the same. Some are nearer and some are farther, some pass by quickly, and some eddy around the rock for a time. But at some point, they always leave.
So loving ourselves is what we have to do first, even though it may be harder for us than for people who haven't had our struggles. Once we love ourselves fully, then we can truly commit to loving other people, and give them the love they deserve for the time they spend in our lives. Always aware that nothing is eternal, and always aware that we can love powerfully in THIS moment, and then forever, even if we never meet again.
Monday, March 4, 2013
Progress Report
1. I do binge sometimes, and then not take any insulin until my BG is godawfully high. And then I spend the night chasing it down. It comes down a bit, and then starts right back up again, because when my stomach is full, it empties only slowly. So I take some insulin, and 3 hours later, take some more, and that lasts up to 12 hours. Not fun.
2. Left-over behaviors are binge, guilt, and compensatory starving. Also limiting insulin -- I've been very good about not omitting completely, but I tend not to take enough, and I also tend to take it late, which means after my BG has gone up and my CGM is yelling at me that I'm high.
3. The only thing that helps if I'm edging toward a binge is to eat real food until I'm definitely full. I can't tell you how hard it is, because I don't really like real food, and it's a struggle to FORCE myself to eat it when what I really want is sweets. I LEARNED this while I was in full-time treatment, and I'm still seeing the world's greatest dietitian, and she reinforces what I really DO know, but want to ignore. I didn't shop for a team, because I wouldn't be able to travel, anyway, but a lot of girls travel to the Center for Hope here in Reno, because they do have specific resources for women with T1 diabetes.
4. I'm LOUSY at regimentation! The only things that are consistent with me are meds as soon as I wake up, and before I go to bed. Since I have a pump, long-acting insulin is not an issue, and my real need is to be disciplined about bolusing whenever I eat. ANYTHING. I have a bad habit of not bolusing for snacks, and like I said before, I don't usually bolus when I'm starting a binge. While I'm TRYING not to binge, I'm not always successful. I also need to bolus for protein, and not very successful at that, either.
5. I'm trying very hard NOT to weigh myself. My mantra for what may be the rest of my life is it's not weight, it's HEALTH! I need to do what's healthy for me, and not fuss about my weight. I haven't weighed myself for a month or two now, and I really don't know whether I've gained or not, but my clothes still fit, so that's doing well in my book!
And I DO have successes, in that I'm NOT omitting insulin entirely, ever, even if I'm late sometimes, and I'm working on portion control, and better carb counting. I'm working on learning to use the square wave on my pump, with varying degrees of success. And I'm making the effort to force myself to eat vegetables, sometimes, even though I really hate them. I still feel guilty about eating "normal" portions of real food, especially carbs, but I'm working on it. And I'm working on being able to eat "normal" portions of sweets, instead of gargantuan ones.
So I feel pretty good about what I'm doing, food wise, even though it's not perfection.
2. Left-over behaviors are binge, guilt, and compensatory starving. Also limiting insulin -- I've been very good about not omitting completely, but I tend not to take enough, and I also tend to take it late, which means after my BG has gone up and my CGM is yelling at me that I'm high.
3. The only thing that helps if I'm edging toward a binge is to eat real food until I'm definitely full. I can't tell you how hard it is, because I don't really like real food, and it's a struggle to FORCE myself to eat it when what I really want is sweets. I LEARNED this while I was in full-time treatment, and I'm still seeing the world's greatest dietitian, and she reinforces what I really DO know, but want to ignore. I didn't shop for a team, because I wouldn't be able to travel, anyway, but a lot of girls travel to the Center for Hope here in Reno, because they do have specific resources for women with T1 diabetes.
4. I'm LOUSY at regimentation! The only things that are consistent with me are meds as soon as I wake up, and before I go to bed. Since I have a pump, long-acting insulin is not an issue, and my real need is to be disciplined about bolusing whenever I eat. ANYTHING. I have a bad habit of not bolusing for snacks, and like I said before, I don't usually bolus when I'm starting a binge. While I'm TRYING not to binge, I'm not always successful. I also need to bolus for protein, and not very successful at that, either.
5. I'm trying very hard NOT to weigh myself. My mantra for what may be the rest of my life is it's not weight, it's HEALTH! I need to do what's healthy for me, and not fuss about my weight. I haven't weighed myself for a month or two now, and I really don't know whether I've gained or not, but my clothes still fit, so that's doing well in my book!
And I DO have successes, in that I'm NOT omitting insulin entirely, ever, even if I'm late sometimes, and I'm working on portion control, and better carb counting. I'm working on learning to use the square wave on my pump, with varying degrees of success. And I'm making the effort to force myself to eat vegetables, sometimes, even though I really hate them. I still feel guilty about eating "normal" portions of real food, especially carbs, but I'm working on it. And I'm working on being able to eat "normal" portions of sweets, instead of gargantuan ones.
So I feel pretty good about what I'm doing, food wise, even though it's not perfection.
Sunday, February 24, 2013
Initiating an eating disorder
I know a very talented young lady, Amy Hearn, who has both Type 1 diabetes and an eating disorder. Recently, she posted a cartoon she did on a private group on Facebook, but I think it's so good that I asked her if I could share it here. It really spoke to me, and I think it will speak to a lot of people. So, without further ado, here it is:
Friday, February 1, 2013
My pancreas
My pancreas is a blob of Swiss-cheese-like yellow spongy material. The
spongy material is the stuff that still works, secreting the digestive
hormones, and the holes are where the beta cells used to be. And
something that now resides in my brain got to my pancreas and stole my
beta cells. And that something is much like Gollum in Lord of the Rings.
He is pale, slimy, white, skeleton-like, and has HUGE blue eyes, and
most of the time, he sits on the back of my brain, holding my dead beta
cells, and whispering "My preciousssssss." He really loves them. Most of
the time, he is pretty quiet, but sometimes he comes roaring out, and
yells at me that I can't eat, because I did this to myself, and I need
to PROVE what? I don't know. That if I could only get thin enough, the
diabetes would go away? I already tried that. Didn't work. That I might
as well give up, and binge myself to death? I don't REALLY want to do
that, because I tried that, too. I could live with my diabetes if I
could get HIM to go away.
This is my attempt at the image I was trying to convey in the previous words. That's diabetes + eating disorder + body dysmorphia happily riding my poor skewed brain. And that's my spongy pancreas, missing all the beta cells it's supposed to have. And it's my matronly body shaped like an apple. I'm not particularly happy about all this, and I REALLY don't like poking myself with all those needles! Even though I'm now on a pump!
This is my attempt at the image I was trying to convey in the previous words. That's diabetes + eating disorder + body dysmorphia happily riding my poor skewed brain. And that's my spongy pancreas, missing all the beta cells it's supposed to have. And it's my matronly body shaped like an apple. I'm not particularly happy about all this, and I REALLY don't like poking myself with all those needles! Even though I'm now on a pump!
Wednesday, January 30, 2013
Thinking, again
I've had a pretty rough week. Out of 7 days, I restricted my eating on 6 of them. And felt virtuous about it. Just the opposite of what I would tell ANYONE else! So I saw my dietitian today, and she wasn't happy about it, and we agreed on a minimum amount of food intake, while being free to eat anything else I want to. And the thing I need to reinforce, over and over and over, is that I KNOW the road, I just need to walk it. Or crawl it. Kicking and screaming, but go on, and do the right thing.
My biggest problem is that intellectually, I know what starvation does -- it puts your body into starvation metabolism, and it struggles to provide energy to keep your vital organs alive by raiding first, glycogen stores in your liver, and then any fat you've laid down, and then by breaking down muscle, and finally, you die because your vital organs become too damaged to function. But emotionally, it seems like weight is weight, and the number on the scale somehow becomes a major part of my consciousness. And I will myself not to be hungry, but it can't last forever. And then, when I have the opportunity, I make a beeline to the cookies, or the cake, or the ice cream, without even thinking. I do it totally impulsively, because by the time I've gotten that far, there is no brain left. It's not like, I think I'm going to binge today -- I just DO it. And I don't take my insulin until AFTER the binge, when my blood sugars have gotten way too high, and then it takes me several days to get them down to range again. Does this sound like sabotage? Because it IS!
The other thing I've noticed is that even if I restrict, my body will not cooperate in keeping my blood sugar in range -- the amount of insulin I take when I'm not restricting is not sufficient to turn off my liver's glycogen release. As I said above, that glycogen release is NORMAL, and I know it's happening because I'm not eating enough.
So somehow, brilliantly intellectual Natalie has to convince little, emotional Natalie what's good for her. It CAN be done, but more importantly, it MUST be done. I cannot and must not sell myself down the river. Totally not worth it, if I can only believe!
My biggest problem is that intellectually, I know what starvation does -- it puts your body into starvation metabolism, and it struggles to provide energy to keep your vital organs alive by raiding first, glycogen stores in your liver, and then any fat you've laid down, and then by breaking down muscle, and finally, you die because your vital organs become too damaged to function. But emotionally, it seems like weight is weight, and the number on the scale somehow becomes a major part of my consciousness. And I will myself not to be hungry, but it can't last forever. And then, when I have the opportunity, I make a beeline to the cookies, or the cake, or the ice cream, without even thinking. I do it totally impulsively, because by the time I've gotten that far, there is no brain left. It's not like, I think I'm going to binge today -- I just DO it. And I don't take my insulin until AFTER the binge, when my blood sugars have gotten way too high, and then it takes me several days to get them down to range again. Does this sound like sabotage? Because it IS!
The other thing I've noticed is that even if I restrict, my body will not cooperate in keeping my blood sugar in range -- the amount of insulin I take when I'm not restricting is not sufficient to turn off my liver's glycogen release. As I said above, that glycogen release is NORMAL, and I know it's happening because I'm not eating enough.
So somehow, brilliantly intellectual Natalie has to convince little, emotional Natalie what's good for her. It CAN be done, but more importantly, it MUST be done. I cannot and must not sell myself down the river. Totally not worth it, if I can only believe!
Wednesday, January 2, 2013
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