Life's Little Surprises

Last July, I started to just not feel well. Low energy, tired, out of sorts. In Aug. I went to AADE and got persuaded to give a presentation, because the woman who was supposed to give it had a misunderstanding with her boss, and although she sent her slides, she herself was unable to come. The presentation was on diabetes education for people with disabilities, and her presentation was on the deaf and hearing impaired. Well, it just happens that my master's degree is in that field, and education is education, so I gave the presentation, and it was well received. Then I participated in the Strategic Planning Meeting -- our fearless leader Manny was supposed to attend, but he was ill and couldn't make it.

Well, the second day, I was exhausted, running a fever, and my legs were swollen up like sausages. So I didn't attend much. I did staff the booth for a bit, and it was lovely to get to meet Desiree in person -- she's a perky, charming young woman. I also met Kelly Kunik, who was scouting the floor quite a bit -- that's the great part of these conferences.

After the conference, I spent a day with my long-time friend Ann Williams, who is a member of the board, and very passionate about meeting the educational needs of all people with diabetes. We enjoyed each other's company, and then it was homeward.

By the time I got home, my legs were really bothering me, and I was short of breath, and had a headache that wouldn't stop, so I went to my PCP, and she immediately sent me for a renal panel and a chest X-ray. I guess, because the first thing they think of when they see edema is heart and kidneys.

Well, the chest x-ray yielded a surprise -- my lungs are covered with minuscule spots, and she didn't know what they were, so she referred me to a pulmonologist. Then turns out that he isn't much worried about them, but will watch them to see if they change. I'm not worried either, because cancer doesn't present like that, and if they DO change or grow in the next 6 months, then we will look into it.

My cardio did an echo, and the result was that he said my heart is a little stiff, but not creating any problems at the moment, and he'll just keep a watch on it. He also gave me Lasix for the edema, but it's not particularly working. When I told the pulmonologist about that, he said that when the body doesn't get enough oxygen, it does tend to retain fluids, and diuretics don't work well. So he has scheduled me for a sleep study. Since I don't have a bed partner, I wouldn't know if I stop breathing or snort during sleep. The good part of the sleep study is that he's also giving me something for my restless legs, which is working well, for the first time in my life -- 66 years of untreated restless legs is a bit much to endure!

OK, now for the bad part. The renal panel came out showing stage 3 (out of 5) kidney failure. Not severe enough to need dialysis, and at this point, I don't even need to follow a kidney diet, but this makes it possible that those will become a reality in the future. That shakes me up, because I have enough problems with food because of a combination of being a picky eater, having an eating disorder, having diabetes, and now contemplating the possibility of having to limit my diet because of kidney disease. 

I had been very proud of surviving 23 years of diabetes with NO complications, and here I am, smacked in the face. It's not a good feeling. So I'm hoping some of you will read this, and my wonderful, supportive friends here will once again do their magic.

The Problem with Type 2

People with T1 diabetes often complain that most of the research money is going into T2. On the contrary, while there is a lot of money going into research on T2, there's more going into T1 and a cure, or at least an artificial pancreas, is clearly on the horizon.

However, the biggest problem with research on T2 is that it is a garbage-can diagnosis -- anyone who is not auto-antibody positive, has not had a pancreatectomy, or who does not have one of a number of rare syndromes is then automatically lumped into the T2 category, but that does not mean they all have the same disease. They don't all have the same gene mutations (if they did, the mutation would have been found by now), and therefore don't all have the same enzyme and hormone malfunctions. So it boils down to a lot of scientists working, not on pieces of the same jigsaw puzzle, but on totally different jigsaw puzzles, with precious few clues.

There are plenty of people willing to assign blame to T2s, assuming that they brought it on themselves because of lifestyle issues, but that's because they are ignorant and proud of it, and it's important not to let those people get you down. Do what you have to and don't hold your breath for a cure, because T2 is DARN complicated, and it's going to take a lot more basic science to even get to the point where anyone even has a IDEA for a cure!

Diabetics in Denial

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.

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.

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! :-)