Thursday, January 26, 2012

Moaning and Groaning

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

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

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

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

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

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

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

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

Can you relate?

Tuesday, January 17, 2012

Paula Deen

On Tue, 17 Jan 2012 20:15:16 -0000, someone wrote:

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

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

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

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

Friday, January 13, 2012

Open letter to the AADE

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

Dear people,

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

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

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

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

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

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

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

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

I appreciate your attention.

Natalie A. Sera

Wednesday, January 11, 2012

More thoughts on obesity

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

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

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

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

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

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