Holy @#$! Amazing Stories, Vol. 10: Twenty-One and Miserable

Marie Dysli lives in Switzerland.  She is young, beautiful, diabetic, and miserable.  Last week, she emailed me her story, asking me to share it with the D-community.  “I hope this will help other diabetics and make them feel less monster-like, as I thought I was by combining diabetes, depression and eating disorder,” she writes.  Prepare yourself for some alarming honesty:

 

Marie_2

I’m twenty-one years old and was diagnosed with diabetes type 1 thirteen years ago. My first reaction was “why me?” and a few years later I thought I was used to it and had therefore accepted it. In fact, I had neither. The truth is I denied this great handicap that is diabetes. I wanted to be like the others, eat the same things, do the same things without thinking “how am I feeling? Did I inject enough insulin? Or too much? Shouldn’t have had eaten this or that?” etc. My mother was always behind my back asking for my glycaemia or wanting to give me advice on what I should inject, saying all the time that, without her I “couldn’t do it properly.”

Ten or so years later, my
at least seven-year-old depression has reached a dramatic low point, my HbA1c
is at 14.1%, I’ve got a serious eating disorder for years (I have, as long as I
can remember, always had an anorexic mind. Now I practice self-induced vomiting
several times a day for about 7 months, have lost 15kg (which is a good thing.
And want to lose 15 more, which may not be medically a good thing), and my only
complications are genital warts and HPV (human
papillomavirus,
condyloma acuminata). “Only”, because my eyesight is
good at 200%, I haven’t got any feet problems, nor neuropathy or any other nice
gift any diabetic is expected to have, especially with a such unbalanced
diabetes as mine. Of course, the addition depression, eating disorder and
hyperglycaemia equals exhaustion, difficulty to sleep and concentrate,
pessimism, etc. I climb stairs and walk more slowly than elderly people, the
mere little walk tires me and the thought
of many other thing tires and discourages me. But I can’t complain, can I?
Everything is my fault, except diabetes of course, and I’m lucky not to have
retinopathy already.

I am the perfect example
of the denial, rebellious diabetic, refusing the handicap, whose parents,
trying to help, helped too much. In two weeks time, I’ll be hospitalized for
two or three weeks, first to lower my dramatically high haemoglobin level, and
to work on my depression and eating disorder. But I don’t think there is any
use of doing that if, as a diabetic, I am doomed to have complications, even if
my glycaemia and haemoglobin level are perfect. I have been lucky until now,
but am I going to be lucky all my life? I do not know what to think. My fear of
being taken for a type 2 diabetic, even if my BMI is normal, increases my fear
of putting on weight. Should I enjoy my eyesight while I can?  Run a marathon
while I still have my feet?  Should I stop fearing the worse and trust my luck?
The only thing I know is: diabetes is a far more greater handicap than I
thought. Living with it is harder than I thought. The only certitude with the
disease are complications.  How is it possible to live with that on our shoulders?
In my opinion the answer is yet to be found.

Oh, Marie… 
She has promised to keep us posted on how the hospitalization helps her.

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31 Responses

  1. Scott M
    Scott M April 6, 2007 at 7:57 am | | Reply

    What a disheartening story, Marie. I won’t pretend that life with diabetes is easy, I too deal with it everyday. The addition of other medical problems too, makes my heart reach out to you. I have no room to comment on your other problems, but I can assure you that life with diabetes does not guarantee such extreme complications. Research has shown that keeping glucose levels in healthy range dramatically decreases diabetic complications.
    I say forget about luck. You control your diabetic destiny and I applaud you for seeking the guidance from professionals and the support of your online diabetic community.
    You are a beautiful Swiss woman, and I hope many healthy years lie ahead of you. Stay strong.

  2. Scott
    Scott April 6, 2007 at 10:09 am | | Reply

    I have long said that what passes for “comprehensive diabetes care” lacks one major, but necessary, element: pyschological care. Some enlightened clincs now include it, but they are few and far between. Until the medical profession are willing to address this as a vital component, they will continue to see such depressing statistics as 59% of all patients with diabetes are out of “control”, and widespread complications. It does not have to be this way, but the medical profession needs to acknowledge these very genuine issues and include them as part of comprehensive diabetes care.

    Marie Dysli has taken the first step, now she needs to get help from her diabetes care team, who sadly seem to have been blaming her with labels such as “noncompliant” or other condescending terms!

  3. Scott K. Johnson
    Scott K. Johnson April 6, 2007 at 11:01 am | | Reply

    Three times Scott – what are the chances of that!

    I agree very much with Scott S. Our “comprehensive diabetes care” does not take into the picture the psychological aspects of dealing with our condition. What good is all the tools if your head is not in the right place to make use of them?!

  4. julia
    julia April 6, 2007 at 1:01 pm | | Reply

    Marie – Thank you for sharing such a difficult story. I’m anxious to hear the outcome and I hope you get the help you need. What a difficult thing to go thru.

  5. Anne
    Anne April 6, 2007 at 7:51 pm | | Reply

    Hey Marie,
    Hang in there. I have a good friend who has struggled through many things, including anorexia and bulemia. Those are both really tough but you are doing the right thing by seeking some help.

    I know that when my blood sugars are really high, it can really cast a dark shadow over everything. I have felt, in a matter of minutes, my mood change (for the better) as my BG came down.

    From what we know so far, keeping your blood sugars under control, as well as you can, really does help prevent long-term problems. I’ve had diabetes a long time, too, and I don’t have any complications. There aren’t any guarantees for anyone in terms of health, but it’s definitely worth the effort, both in the short term and long term effects of the disease.

    Best wishes to you. Keep us posted on how things go.

  6. JasonJayhawk
    JasonJayhawk April 6, 2007 at 8:21 pm | | Reply

    Marie will be glad to know that once A1c levels get to “normal” levels, some of those icky feelings, such as the lack of ability to concentrate, and fatigue, may go away.

    Having “good” control for several months will end up causing the return of those yucky feelings to be the catalyst for returning back to “normal” again. It’ll take some time, but it’ll be worth it — it’ll feel like a new battery.

    Thyroid levels are also a good thing to check. ;-)

  7. Tavi
    Tavi April 6, 2007 at 8:55 pm | | Reply

    hi Marie,
    Let’s all admit, there are many other beautiful things in life we have to enjoy then just not having diabetes. Diabetes is nothing compared to other horrible things. Diabetes is a metabolic condition not an illness. I struggle everyday with my high and lows, but I manage to have a decent life. You really have to believe that if we stay away from complications as much as we can, we’ll have a chance to be successful one day. Hang in there.
    Keep us posted.

  8. Jenny
    Jenny April 6, 2007 at 9:07 pm | | Reply

    Thanks for sharing Marie’s letter. It was amazingly honest and shed a lot of light on how my 12 year old might be feeling about my involvement in his care. She sounds like a very bright, sensitive woman who deserves to be well. My son and I will be anxious to hear of her progress.

  9. Sheri Colberg PhD
    Sheri Colberg PhD April 7, 2007 at 10:04 am | | Reply

    Marie,
    It is possible to live long and well with diabetes. I recently interviewed the longest-living person in the US with type 1 diabetes, an 90-year-old woman with diabetes since 1924. If she can live that long, mostly without a blood glucose meter or all the tools available to you, then think how well you can do by using them. Look for my book, “50 Secrets of the Longest Living People with Diabetes,” coming out on October 28, 2007. Use links to buy it from my web site (www.shericolberg.com), or go to amazon.com to look it up. Good luck with turning your life around for the better. You will feel better when you get your sugars under better control.

  10. PJF
    PJF April 7, 2007 at 11:30 am | | Reply

    Marie,
    I thought I was reading a letter written by myself when I read yours. We have so much in common – which is a good thing to feel like I am not alone, but also saddened by the awful position we are in. I am 22, living in Canada, and have been diabetic since age of 8. When I was 18 I became anorexic, lost too much weight and felt like in competition with my diabetes (if i maintained good sugar levels by eating less and less then I would need less and less insulin – i dropped 50 units of insulin and still had good sugar levels). I got treatment for anorexia, and thought I was better. But the recovery was frustrating – I was gaining weight again and my sugar levels were soaring because i was eating again. I started to skip insulin injections to maintain my low weight and it’s been a dangerous game i’ve been playing for 3 years now. Unfortunately i am still not normal, but am trying every day. i’ve been to doctors, but now refuse to go. most people think i am ok but am worried – and although i have no apparent complications yet, i know it will happen soon unless i get better. I admire you for getting hospitilized, and i think it’s so brave – because i am afraid to do it, but know that it might be the only way out of this.

    When my sugars have been so high, my mood definitely gets whacky and i have gotten suicidal, hysteric, lost contact with reality and have had hallucinations. i believe that when your sugars will go back to normal, a lot of your depression and mood will get better. and that’s when the real therapy will begin.

  11. Sarah
    Sarah April 9, 2007 at 1:26 am | | Reply

    Hey Sweetie, I just wanted to say that I also have a HORRIBLE fear of being “Mistaken for a Type 2 diabetic”. I thought I was the only Type 1 who felt this way!!

    Although I am thin and do not have an eating disorder (A1c 7-7.5), I understand how you feel.

    While it is true that some have genetic protection from complications, and others develop complications with an A1c of 6.0 due to autoimmunity (there is recent evidence to suggest that some complications in some Type 1′s are autoimmune in nature), you can’t take the risk of letting yourself go if you do not have genetic protection. You don’t know which way it will go.

    Once (if) damage sets in, it will be too late. You also must feel like you are 90 instead of 21. Your body is fighting to live, not die. Take care of what you’ve got, so you will be around to enjoy a cure, if and when one is found. You will feel much better and healthier, if nothing else.

    All of us Type 1′s understand what you are going through. You are not alone, but you are strong. Hang in there.

  12. Penny
    Penny April 9, 2007 at 6:19 am | | Reply

    That was very painful to read. How many other Maries are out there?

    I’m thinking about you, Marie, and wishing you the best in your treatment and the rest of your life.

  13. Barbara
    Barbara April 10, 2007 at 11:45 am | | Reply

    Marie: The feelings about diabetes which you shared lurk in all of us with T1 diabetes. I’ve denied the struggle for 44 years and it’s huge. I hope you will find some relief…

  14. Jennifer
    Jennifer April 10, 2007 at 1:11 pm | | Reply

    Since when did being a type 2 diabetic have so much stigma? I am sick and tired of people being “afraid” of being mistaken for a type 2. What kind of prejudice is that? Completely unfair and totally unacceptable.

    I’m sorry Amy but I can’t read your blog in good faith anymore with that type of attitude from fellow diabetics. Best wishes to you.

  15. Mama Tricia
    Mama Tricia April 10, 2007 at 3:41 pm | | Reply

    Hi Marie. The tears are flowing over here. My daughter, now 5, was diagnosed at age 3. I don’t want to be that mom that is overprotective, but how do i do that with type 1 diabetes?
    She is a beautiful, vivacious, passionate little girl. how do i help her to understand, help her to be physically strong and mentally healthy with regard to food, without driving her crazy learning to count carbs? help.

  16. cindy
    cindy April 10, 2007 at 5:00 pm | | Reply

    Marie,
    i would like to hear some details about what they do to treat you. i had an eating disorder for nine years, which ruined my immune system — i have type 1 diabetes and some other autoimmune diseases too. i know it was my fault for destroying my body with anorexia and bulimia. but my problem is that when i start counting carbs or fat or calories to try to get my sugar under control, it feels like i’m practicing an eating disorder again. it freaks me out to pay so much attention to food all the time. so then i stop checking, i eat whatever, i take insulin less than i should, and i agonize over weight changes… i take diet pills, etc because i am always too weak to exercize. i have neuropathy, vision problems and kidney damage already, and i’ve only been diabetic for seven years. it would really help to hear what kind of program they put you on to get your sugar and eating under control. my doctors keep dropping me because they’re so frustrated i never make any progress. my A1c has never been below 10. i feel awful and exhausted and mushy-brained all the time.
    thank you for sharing, and best wishes for your improvement.

  17. Sarah
    Sarah April 11, 2007 at 2:14 am | | Reply

    RE:”Since when did being a type 2 diabetic have so much stigma?”

    While I agree Jennifer that not all Type 2 diabetics should be lumped together, the sad fact is that there IS a stigma with Type 2 diabetes, like it or not. Take a look around. Scientific studies tell us that the majority of Type 2 diabetes cases can be prevented, soaring obesity rates are killing us, and our children as well as society in general are eating themselves into the grave with trans fats, junk foods, and lack of exercise. Read all about the obesity and Type 2 diabetes explosions in the media. Read about Type 2 prevention and the UN resolution to prevent Type 2 diabetes. If the vast majority of Type 2 cannot be prevented and are not a result of a person’s own doing, are you saying that these agencies and scientists are all wrong?

    Now, while YOU may be one of the 20% or so that has a non-preventable form of Type 2 diabetes, 80% CAN prevent it. Just because YOU were thin, ate healthy, and exercised, but still developed Type 2 due to genetics, should we say that those who CAN prevent Type 2 should not be held somewhat responsible for what they do? I am sorry if you have Type 2 due to genetics only. I am talking about those who develop Type 2 due to excess weight, poor diet choices, etc.

    Believe me when I say that parents of Type 1 diabetics (the severe non-preventable form) HATE being asked on a daily basis if their T1 diabetic child was “fat”, “ate too much junk
    food”, or having someone suggest that the Atkins diet and cinnamon will rid their child of diabetes. Parents are dealing with this deadly disease in their child. They don’t need to be misinformed and blamed by the public for “failing to prevent diabetes” in their child. An article here stated that 67% of people don’t know the difference between T1 and T2, and the vast majority incorrectly think Type 1 diabetes can be prevented/cured! Doh!

    People with Type 1 are being told they got it because they ate the wrong foods. Children are getting blamed because of the ignorance of Type 1 diabetes and the stigma of Type 2. It exists, like it or not. And for all of those with “preventable” Type 2 cases, maybe it’s rightfully so. Ever see SuperSize Me? The person featured drank 2-4L of soda daily, until he needed gastric bypass surgery to “cure”/treat his “diabetes” (Type 2).

    Sorry, but it’s kind of hard for those parents with Type 1 babies jabbing their kids with needles having to see a case where someone WILLINGLY “gave themselves” a case of diabetes. Good luck finding out if the general public feels differently.

    There REALLY ARE people who develop Type 2 because they are obese and eat fried chicken every night. Of course they must have the genes for Type 2, but they don’t have to activate those genes by eating crap.

    While I believe all with diabetes need support and access to good care, facts are facts. I am simply stating what much of the general public believes.

    Case in point…when people were shown an ad meant to raise awareness for Type 1 diabetes and to help Type 1 diabetics get their life-sustaining diabetes supplies, everyone said that “she (the young girl in the ad) did this to herself, why should I help her”? Horrible. And medically and factually incorrect.

    People also don’t realize what Type 1 diabetes is in terms of care. A Type 1 must be their pancreas every second of every day. The can have low blood sugar seizures, risk DKA coma, have severely fluctuating glucose levels, and other autoimmune diseases, among other things.

    Many Type 2 diabetics can have an A1c of 5.5 once they actually lose all excess weight and follow their care plan. I’ve seen it.

    Type 1′s do not want to be thought of as a Type 2 who “just needs to avoid sugar” when they are in the midst of an oncoming hypoglycemic attack if their next meal is late. No one understands the severity of Type 1 if they think of and are only aware of Type 2. It’s not just about “keeping the numbers down”, or “having a daily walk and cutting carbs” for Type 1′s. It’s a struggle between life and death for many.

  18. greta
    greta April 11, 2007 at 7:00 am | | Reply

    “Sorry, but it’s kind of hard for those parents with Type 1 babies jabbing their kids with needles having to see a case where someone WILLINGLY “gave themselves” a case of diabetes.”

    Have you ever met a fat person who willingly became fat? Has it ever occurred to you that many skinny people eat just as much junk food as many fat people, often more?

    Both types of diabetes are serious conditions, and we need to work together to control this disease instead of blaming each other.

    I think some people with type 1 need to do more work on learning compassion.

  19. Sarah
    Sarah April 11, 2007 at 12:56 pm | | Reply

    Yes, I HAVE met people who “willingly” ate junk and fast food all day long and subsequnetly died from Type 2 diabetes. Their doctors told them they were on a one way road to the grave. Did they stop? NO. Why do you think I am so passionate on this issue? I have SEEN these cases!

    You will note that I wasn’t blaming “fat” people so much, but rather THEIR HABITS which got them fat. You mean to tell me people have no control over what they eat?! Skinny people can eat crap and develop Type 2 as well. It just happens that *most* people put on weight when they do so. It’s the fact that most “fat” people DO NOT eat right and exercise. I am attacking the bad lifestyle choices of *any size*, not direct weight.

    The truth isn’t always pretty. Everyone needs to take responsibility for their own health. Why do you think the Bush government has cut diabetes funding?! It’s common sense to eat right, and why should they spend money trying to “cure” a preventable and sometimes “reversible” disease (Type 2)? Especially if people refuse to listen? If people want to live unhealthily, they are on their own.

    Perhaps some Type 2′s should have more compassion for those with Type 1 diabetes. It’s much harder to live with/control, they usually get it in childhood, and there was NOTHING they could have done to stop it. They also hate being told they could have prevented their disease, and they can be cured with diet and exercise. Or that they are “bad diabetics” who let themselves go because they “need insulin”. Shameful!

    It’s no coincidence that the ADA uses stories about children with Type 1 diabetes and their “daily needles” for ad campaigns. That is how they make their money. Putting a middle aged overweight women with Type 2 diabetes just won’t generate any money. What’s really sad about this is that Type 1′s are being exploited, as the ADA services mostly Type 2′s.

    I’ll work on my compassion, but people better start making better choices. If it’s true that 80% of Type 2 cases can be prevented, that’s about 16800000 cases in the US alone that don’t have to exist, leaving more money for those who CAN’T prevent their disease.

  20. Sarah
    Sarah April 11, 2007 at 1:06 pm | | Reply

    “Has it ever occurred to you that many skinny people eat just as much junk food as many fat people, often more?”

    Does this make it right? A good percentage of people who smoke never get cancer. Should we say that it’s acceptable for someone to smoke because “some smokers never get cancer”? Does that not sound crazy? The blame lies in smoking, not the outcome. Once again, it’s unhealthy HABITS that I am attacking. We may not have control over our body size, but we DO control our lifestyle. That’s just common sense.

    I personally have seen more overweight people that follow bad lifestyle habits than thin people. Although not always, most thin people DO work hard to stay fit and healthy. Most of us don’t roll out of bed a size 6 without effort.

  21. greta
    greta April 11, 2007 at 2:10 pm | | Reply

    Should we stop trying to cure lung cancer because it’s “preventable”?

    A quote from an article on Stephen O’Rahilly, a researcher in obesity research:

    “What O’Rahilly finds particularly irksome about public attitudes, and what he hopes his research will overturn, is our peculiar habit of blaming the victims of these ills for their own misfortune. “I’m sometimes criticized by so-called liberals who tell me that I shouldn’t be working to validate these nasty people whose disgusting behavior has made them so sick,” he goes on. “People who are not victims of these disorders have claimed the moral high ground. They believe themselves to be virtuous. But the truth is, they’re just lucky.”

  22. Sarah
    Sarah April 11, 2007 at 3:02 pm | | Reply

    I understand what you are trying to say, Greta. I DID point out that about 20% of people have a non-preventable form of Type 2 diabetes (MODY etc.), just like some get lung cancer without ever smoking. I DO support reasearch for those with MODY and other non-prebentable forms of Type 2 diabetes. Why wouldn’t I?

    My point was (and you can read what I wrote again) was that I am talking about the PREVENTABLE cases of Type 2 diabetes. Just like we have made progress reducing non-genetic lung cancer cases by reducing smoking rates.

    The fact is, there will never be a true “cure” for the preventable forms of Type 2 diabetes if it is mainly lifestyle related. The “cure” will need to be a change in lifestyle. No matter how you slice it, that’s reality.

    I know I am not “lucky” because I don’t have Type 2 diabetes (Type 1′s can also develop insulin resistance). Yes, I have a healthy metabolism, but I also eat VERY healthy and exercise regularily. Just as many who have Type 2 in their family do as well, to prevent it.

    Luck only applies to genetics, not lifestyle. Genetics have not changed in the past 50 years (when Type 2 was rare and “diabetes” usually meant Type 1), but lifestyle HAS.

    The fact remains, as every article splashed on the news says, that we “must stop the diabetes crisis”. That means preventing and “reversing” Type 2 diabetes (possible for some with weight loss, diet, and exericse).

    It’s survival of the fittest, right? If people resfuse to change their habits, they will suffer and die an early death. In many cases, it doesn’t have to be that way. Are you saying we should let people eat themselves to death and wipe themselves out? We should ignore facts and say (incorrectly) that the majority of Type 2 diabetes cases are due to genetics only, so nothing can be done?

    All I know is that if we teach our children to not take action, they are doomed to repeat this past generation’s mistakes. Obesity levels and junk food consumption is rising, not lowering. So perhaps your post was right. We should just chalk it up to “luck”, and let society crumble.

    We already heard the horror stories of diabetics during the New Orleans flood. Are you healthy enough to survive a disaster? Survival of the fittest, right? Why would anyone WANT to make themselves so unhealthy that they need medication to live, if they didn’t HAVE to? Again, I speak for the 80% of Type 2 cases that again, did NOT have to happen.

    Without some change, I am scared to see how weak and sick of a species we will have become.

    While I support people with Type 2 diabetes who are making healthy choices, I find it hard to think about the many who are not.

  23. Sarah
    Sarah April 11, 2007 at 3:35 pm | | Reply

    Stephen O’Rahilly fills a need in society. People would rather have a researcher doctor up data to allow them to feel as though their choices didn’t matter in the course of their disease. I don’t buy that air conditioning, falling smoking rates, etc. is the cause of the majority of obesity cases. That is a joke on the people who believe that. Scientists are laughing at them.

    The truth is, all we know is that Leptin plays *some* role in obesity. The real kicker is that we don’t know which came first, the chicken or the egg. What if low Leptin levels are a RESULT of poor diet/obesity? Also, Leptin controls appetite. Once again, who has control over what they eat? You may still be hungry after 2 plates of food, but you’d be a fool to eat more. Even the most uneducated people usually have SOME idea of portion sizes and how much is too much. If we have gotten to the point where the average citizen thinks that a whole POT of mac and cheese is a “serving”, we seemingly have intelligence issues as well as obesity issues.

    People need to get back their common sense, before Type 2 diabetes wipes out the population.

  24. Sarah
    Sarah April 11, 2007 at 3:45 pm | | Reply

    I also want to point out that there are other medical causes of obesity (Cushing’s Syndrome, Prader Willi, etc.) but these are RARE. Think about it. How many do you know with Cushing’s Disease compared to how many you know who are obese? These make up less than 5% of obesity cases.

    Also, in most cases, weight will return to normal when the underlying disease is treated. It is not a free for all to remain obese.

  25. Sarah
    Sarah April 11, 2007 at 3:51 pm | | Reply

    O’Rahilly studies mainly RARE genetic forms of Type 2 and obesity causes. I think his work should not be taken out of context, which it seems to be. Here is a result of some of his research, which is NOT aimed at the vast majority of (preventable) Type 2 cases:

    “Scientists have identified a gene that appears to play a crucial role in controlling the way the body breaks down sugar and maintains a healthy blood pressure.
    They believe the breakthrough could eventually lead to the development of new drugs to treat patients suffering from some forms of high blood pressure (hypertension).

    Stephen O¿Rahilly, Professor of Metabolic Medicine, and Krishna Chatterjee, Professor of Endocrinology, at the University of Cambridge, made their discovery by studying families who suffer from a rare form of diabetes.

    Diabetics often suffer from obesity and hypertension caused by a failure to control levels of glucose (sugar) in the blood. Blood sugar levels are usually controlled by the hormone insulin.

    The researchers found that families with the disease carry two mutated versions of a gene called PPAR gamma.”

  26. greta
    greta April 11, 2007 at 4:44 pm | | Reply

    Sarah, my heart bleeds for the problems faced by little children with type 1 diabetes, and just as much for their parents. It’s more difficult to watch your child suffer than to suffer yourself.

    But the more you ramble on about type 2s bringing this disease on themselves, the less compassion I feel for the type 1s. I think you’d serve the cause best by keeping your thoughts private.

  27. Cindy Tornes
    Cindy Tornes April 15, 2007 at 2:01 pm | | Reply

    My son suggested I check out this blog because my daughter (his sister) has had Type 1 diabetes since she was 10 and is now 21 years old. Because of her diagnosis, I left my Operating room job and became a certified diabetes educator. My response to Marie and everyone is to try to link up with a diabetes educator. I think you will get a lot of psychological care as well as individual, compassionate attention. Many of us have diabetes ourselves or children/family members with it and therefore can understand the struggle on a personal level. Finding a good personal fit is important. As far as overprotecting our children with Type 1, we are all going to try and do the best we can. When I did home health nursing it was the children who had no parental attention that by far were in the worst control. I also stress with my patients that they are not going to have perfect numbers, you really try to just do the very best you can. I certainly can not brag about excellent control with my daughter since she is no longer living at home even though I am an educator. But, she is now a senior in college and she knows when she needs assistance with her diabetes. Just this weekend she had a stomach virus and called for help. It was difficult to be 6 hours away but “telephone medicine” kept her out of DKA and the hospital and she will know more of how to care for herself the next time it happens. Education truly is the key. It is such a difficult disease for teens and young adults. Complications are NOT inevitable; however you must take an active part to prevent them.

  28. Angel
    Angel June 3, 2007 at 9:49 am | | Reply

    Marie, who would think that a 46 yr old obese woman would have a like mind? I’m paranoid to eat and obsess about it at the same time. I used to mindlessly enjoy my choices. Have you ever tried to socialize when you can’t eat gluten? It’s a nightmare of plain meat and plain salad over and over. Oh, throw in a baked potato, but I shouldn’t cause I’m fat.

    I found out last year I had celiac disease; an autoimmune disease from eating gluten proteins in wheat, rye, barley and contaminated commercial oats (had symptoms my whole life, but since it’s such a little known disease to doctors in the U.S., 97% of us are undiagnosed, even into their 70s!).

    In some regards it was like I was addicted to bread – whole grain or otherwise. And I never felt full (a mini Prader-Willi?). Since I gave up gluten cold turkey the day I was diagnosed, I have felt normal. So my satiety totally changed. And now I have to redo my life since I’ve been reborn.

    My brain fog, depression, anxiety, CHRONIC FATIGUE, fibro symptoms, and a whole host of other problems are GONE since giving up the gluten. I don’t know your medical history, but maybe you might want to read about it (there was a good intro story in Dr. Groopman’s new book, “How Doctors Think” about a celiac who went from doctor to doctor. They thought she was messed in the head/hypocondriac/anorexic …)

    The reason I bring all this up is that I’ve read there can be misdiagnosed anorexia or bulimia associated with celiac … autoimmune diseases can run in clusters; type Is are at risk for celiac also.

    And when I look at obese people eating at McDonalds all I can think is how they don’t know about gluten. Giving up gluten didn’t make me lose weight, though. I gained 20 lbs cause I was absorbing nutrients/calories even better. Food is now a science for me; I taught my nutritionist about celiac. And she charged ME $138/hr.

    Too bad our food chain contains so much gluten, dairy, corn, soy … and the medical establishment pushes medicine/pharma, not health – is there money in celiac research when the Rx is not eating wheat?

    I’ve written Dr. Oz numerous times to bring up celiac on Oprah – you think Oprah wants the Grain Industry on her door? Anyone read The China Study? Politics inside the Beltway runs our healthcare. And we’re not gaining anything but weight. (China Study: good book, but vegetarians might want to look to take out grains rather than meat. I did the vegetarian thing — yeah, a fat vegetarian.)

    One in 4,700 have been diagnosed celiac. One in 100-133 have been undiagnosed (per random blood samplings). Doctors associate this disease with diarrhea and rapid weight loss (that’s end stage celiac when doctors finally don’t think you’re complaining and SEE the results).

    I was constipated and fat. I kept trying to eat “balanced” per the USDA food pyramid. D’oh! If doctors don’t know about this disease, then why should regular Joes/Janes?

    Go easy on fatties you all. It took me a year of daily research to become this wise. Joe/Jane are at McDonalds and trying to pay the bills.

    http://jccglutenfree.googlepages.com
    http://www.glutenreactivity.net
    http://www.celiac.com
    http://www.healthranger.com

  29. Angel
    Angel June 3, 2007 at 2:33 pm | | Reply

    Oh, and I forgot to tie in the stats re those who were actually diagnosed celiac and those who were “sensitive” to gluten. 3%* are diagnosed, but between 30-50% are “sensitive” to gluten. (Um, what’s the percentage of the population who are overweight in the US? 50-65%?)

    To learn about diagnosing and symptoms: http://www.csaceliacs.org/celiac_defined.php

    Who can be celiac: (from above site. WBRO: wheat, barley, rye, oats):

    ***A genetic disposition: being born with the necessary genes. The Human Leukocyte Antigen (HLA) genes specifically linked to celiac disease are DR3, DQ2 and DQ8.

    ***A trigger: some environmental, emotional or physical event in one’s life. While triggering factors are not fully understood, possibilities include, but are not limited to adding solids to a baby’s diet, going through puberty, enduring a surgery or pregnancy, experiencing a stressful situation, catching a virus, increasing WBRO products in the diet, or developing a bacterial infection to which the immune system responds inappropriately.

    ***A diet: containing WBRO, or any of their derivatives.

    Untreated Celiac Disease can result in Type 1 Diabetes, Thyroid Disease, Lupus, Liver Disease, Infertility and Cancer.

    *I think I misquoted this % in my previous post. It’s 3%, not 1%.

  30. jenna
    jenna October 24, 2007 at 2:09 am | | Reply

    Marie i cant say i know how you feel but in a way i can. You mentioned that you always had an anorexic mind, i can realate to that. i’ve had diabetes since i was 3 im now 19, i do remember being at high school, everyone eating what they wanted,drinking alcohol and i couldnt. i for a very short while was making myself throw up, binged nearly everyday, I know if i had a strong enough mind i could do that again now to loose weight. I got so depressed i even tried killing myself 3 times.But now my mind is to preoccupied with trying to be healthy. Until i met my now fiance i was drinking everyday getting into certain drugs, smoking ciggeretes (which i still do but im cutting back and trying my hardest to quit) not eating all weekend. But now im in love i want to get married, have children and thats whats helping me now to try a get my diabetes undercontrol. My hb1c is still in the 10 11 area and it is hard work, it is very hard. But i know i can do it. I live in australia in a small country town and the doctors here aren’t like they over there or in america. Over here you basically have to try and work it all out by yourself. There’s not much support from the doctors here only stupid things said like, “well its your choice,if you don’t want to live past 30 then keep going the way you’re going” Alot of people don’t understand how we feel, sometimes we might not show how much we are really hurting inside and thats what everyone else sees. Our happy face.they take notice of that because realising that we aren’t happy and that there’s something wrong scares them. It really scares them. You might not think it but your family really does love you and care about you. There just terrified even guilty because they think that they’ve done something wrong for this to happen. They just want the best for. You’ve got all this support where as i didn’t, I say take full advantag of, show them that you can do it. you’ll be so proud of yourself when your well again and so will everyone else. You can do it i believe in you because if i can come from where i was you can deffinately do it.
    i really do wish you all the best with many years of uncomplecated diabetes to come.

  31. Beverly
    Beverly January 22, 2008 at 6:05 am | | Reply

    Dear Friends, someone questioned how many others share Marie’s story, and I’m here to add another name to this painful list. I was diagnosed with type 1 diabetes 10 years ago, and also suffer from bulemia and binge eating that started two years ago. Surprising how common it is that the frustrations of weight gain and insuline injections are leading to eating disorders. I fear that it’s killing me and don’t know how to stop this tangled cycle.
    I suspect that there are hundreds more that could tell the same story, and that’s why it’s soo important that we come forward. From my experience, the shame involved with bulemia leaves me suffering in silence…and it continues to eat away at my health and self esteem.
    I can’t afford to be hospitalized! And the medical suport I sought out proved unhelpful and humiliating.
    I want to thank those that have shared their very familiar stories…I feel so scared and alone.
    Any advice from those who have been in my shoes and have made it out of the darkness would be life saving and appreciated!!!
    Sincerely,
    Bev

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