Friday, March 30, 2012

Type 2's and diabetes education

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

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

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

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

Thursday, March 15, 2012

Publicity for Type 1

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

Monday, March 12, 2012

Odd ducks, indeed

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

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

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

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

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

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

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

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

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

Wednesday, March 7, 2012

When I'm 64!

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

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

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

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