Hanuman Garden: Interview: Diane




		Dr. Clown: As a Type 2, when were you diagnosed? Diane: In the early eighties. I was probably about 40 years old. Dr. Clown: And did it come as a surprise? Or is there a history of it in your family? Diane: My mother had it but never really dealt with it very well. Kind of ignored it. Which I did for years too. And it came up in a routine blood test. That the glucose was high. So I didn't really take it seriously until about maybe 10 years ago, figuring, as long as I feel well, I'm okay. Dr. Clown: So you just kind of kept thinking, oh, I'm fine. Diane: Yeah, because it's the kind of disease where you don't necessarily see things happening. But the older I got, the more I did see things happening. Typically Mondays were really bad days, because I had overeaten on the weekend. I have a very rigid routine of what I eat. -- On weekends I would tend to fall off. So on Mondays I had little energy, I'd be yawning all day long, and it wasn't a good day. So I would always try to plan my schedule around that. Now that I've really taken it seriously about the last five years, Mondays are fine. It's all in what you eat. And I can control it that way. Dr. Clown: And how often do you test? Diane: Every morning. Saturday I had a party for my grandchildren, a yearly Christmas party. And yes, I did eat things that I shouldn't have. So that night, instead of taking a quarter of a tablet, I took half of a tablet. So yesterday morning my glucose was fine. But, this isn't a good thing; it's not something you can do very often. But the kids made Christmas cookies and I had to taste them. And I never really ate a whole cookie; I ate the arm off of a gingerbread man, and I ate a star, it was a little star and it had no frosting on it. But they made the cookies even though they all know Grandma's not supposed to do that. It seems like getting to know it and accepting it, it makes it possible to take those little moments instead of being so hard line about it. I have always enjoyed sweets. So now I make sugar free, fat free instant pudding, and put cool whip in it and whip it up and put a little bit of walnuts in it. It's so good. And I can eat that to my heart's content because it's just milk basically. Because I have to have desert every night. Sometimes I'll just have jello but that's not as good, chocolate things are good. You find ways to treat yourself because you can't deprive yourself or you won't stay on it. Dr. Clown: It's a quality of life issue as well because you may feel that the disease is controlling you instead of you controlling it. When you were first diagnosed, because your mother had Type 2, I guess you knew about it? Diane: Not really, no. They just said cut out all these foods. And the diabetic diet is time consuming, pretty horrendous. No carbos, who's going to do that? And you're young and it's not a disease you can see and you think I'm not going to do that. And I didn't. And people were not as health concious as they are now. Dr. Clown: So when you were diagnosed, were you assigned a nurse educator who filled you in? Or did the doctor just say well, you've got this thing and don't eat this and don't eat that and you'll be fine Diane: Yeah, pretty much. Now I think it's a lot easier because I belong to Kaiser and they've got ongoing diabetic support and anytime you feel like you need to be reinforced you just go back. I kind of live like weight watchers. It parallels it very well. There's lots of good menus and so you can get around it much easier. I don't know if you've ever had it, you're probably not old enough, but when they first came out with sugar free soda? Oh, it was horrible! Just drink the real stuff. But now I don't drink anything. I used to have two or three on a shift. Diet, but then that's not good for you either. Dr. Clown: When you were first diagnosed...I guess you went through a period of denial, I don't really have this and everything's going to be okay, but was part of that a fear of not knowing what it was? Diane: The education process wasn't really there like it is now. And I go in every six months and the doctors always check my feet, and nobody ever did that before. They're constantly on top of it. Now they have the...what is it... the hemoglobin "something" test and they now can monitor you for the previous three months. So you can't just be good for the week before you go have your test, that doesn't work anymore. There's more accountability. Dr. Clown: Do you feel like you're at a place that you're really happy with in terms of your management of your disease? Diane: Oh yeah. I made a concious decision two years ago to never have refined sugar again. And I think that I was addicted to it, like cigarette smoking or whatever. And I knew it, because whenever I'd go on these diets it would take me a week to get the sugar out of my system, and then you lose the craving. I absolutely do not have a craving for sugar anymore. So it's made it so much easier. I still enjoy the desserts. I used to go into See's candy and buy a bag and go into the movies and sit there and eat 8 or 10 pieces. But I didn't do it very often, it was an occasional treat. But now you could put a box of See's candy in front of me and I just have no desire. Dr. Clown: We know what we won't be getting you for Christmas. Diane: You just need to find these things out. It's too bad I didn't find them out earlier, but I don't know that there was really any harm done. My kidneys are fine. Dr. Clown: Do you feel that the denial of the disease was more out of fear or indifference? Diane: Oh because you think that you're stronger than any disease. And like I said you don't feel bad or you don't think you feel bad. Now I can say I did feel bad. I didn't have the energy that I have now. It's not life-threatening, like cancer. If you don't do this, this, and this, you're going to die. With diabetes, if you don't do this, this, and this, you're going to compromise your life in later years. It seems to me that a lot of men are diabetic. It seems like late onset, and they don't deal with it at all. They don't know how to eat. And they just won't change their ways. And I've had several women come to me and ask how I do it and what can they do to help them. But that's not it. The person has to make that decision. Diabetes is a very personal disease. I think it's easy for a person on the outside to say, oh just do this, this and this. You're so different from everybody else. You go to a party, and I don't drink. I never did drink very much, but you just can't have alcohol. Like over Thanksgiving we were in this fancy restaurant and I really wanted to have a glass of white wine. And I said, no, I really don't know what it would do. But I will have a piece of pumpkin pie. And I did. It was a small piece of pumpkin pie. And in fact I didn't even eat it all. But it was the idea that I wanted to have it. It was Thanksgiving, and I wanted to have something. Dr. Clown: I think the landscape that's out there in terms of diabetics, it's so different what one person can do to another. It's so different, how people manage the disease. Almost like a bunch of different gardens and each one needs it's own thing. Do you ever feel discouraged when you see different diabetics doing different things and you think oh gee, I wish I could do that. Diane: No, because I know that they're probably cheating, because I've done that. And you can play with medication. I've heard that people who are on insulin will do that. They'll go out and have a binge, and then they'll just increase their insulin. Which is what I did with the pill the other night. I'm really supposed to take a whole pill and I only take a quarter, so that's my justification. And I think that's only the second time I've ever done that. I just didn't want to feel lousy the next day. It could have been because I had eight kids in the house, but I did feel pretty exhausted, I didn't do much of anything. So I don't know if it was eating the arms off the cookie; I think it was all the excitement. Dr. Clown: With your job here and what you do, have you felt at all limited by your disease in terms of how it affects you and all that? Other than having the bad Mondays for a while. Diane: I was a surgical nurse for eight years before I came here. And in that facility you weren't allowed to have any food within the working area. I always had food in my pocket because I have to eat. I graze all day long. Here it doesn't matter; everybody knows. We could be doing a case, and I'll take my lunch in, and I'm always nibbling on something. I wasn't supposed to do it where I was before. I was supposed to leave and go to the break room, but we were only allowed two fifteen minute breaks a day and lunch. But I would be in surgery and I'd have almonds in my pocket and I'd just keep popping them in there. Nobody ever said anything. It wasn't a user friendly place. Here, it doesn't matter. But it's important that I pack my lunch every day. I don't ever come to work without food. Because if I had to depend on going out to eat, I wouldn't be eating the right things. I'm very regimented; I have the same thing every day for breakfast, and pretty much the same thing during the day. Dr. Clown: And so that structure of diet helps you maintain your control? Diane: Yes. Dr. Clown: And you said you take a quarter of a pill a day? And you test in the morning. Diane: I take the tablet at night because it drops my glucose so low that I can't function and it takes two to three hours to come back. I've tried it and that's why I decided to do it at night. Because I'd be force feeding myself just to get the glucose to come up and it wouldn't come up. And you can eat candy to bring it up, but it's not being brought up properly. So the doctor said take it a night, so when your glucose hits bottom you're asleep anyway. Dr. Clown: And two years ago when you said you weren't going to have any more refined sugar, did you also set out a management plan that would also include exercise, diet and medication? Diane: I've been walking for probably 12 or 15 years. It just became a part of my life and I walk 3 or 4 miles every day. It's kind of been a gradual thing, it didn't all come together at once. And I'd say two years ago, it really hit me, this is what I have to do. And now even my doctor writes me little love notes about how well I'm doing when he gets the results of my tests back. So, it works, but I had to accept that I couldn't live like other people. And my friends feel bad because they're having all these good things. So they supply me. They'll bring me a box of sugar free candy, but I really don't want it because it gives you diarrhea like you wouldn't believe. I would rather have one piece of See's candy and not have diarrhea but they'll bring me a whole box of this candy. Dr. Clown: Do you know a lot of other diabetics in your age group or are you pretty much fine on your own? Diane: I don't know that I know any others ones. I heard about them, like when they hear about me they say oh my husband is diabetic and he won't behave. But none of my friends are diabetic. Dr. Clown: Do you ever feel like you would enjoy a support network of other people to talk with? Diane: Oh, I think it would help, yes. Because you could share a lot of ideas. You get to a point where you don't have anything new, so that would be helpful. Dr. Clown: I think it's interesting that a lot of times with diabetics that there seems to be this new pressure, now that they know there isn't a cure and management is key, this pressure that you are either right or wrong. If you don't do this you're bad, if you do do this you're good. Do you feel that for you it creates a certain pressure where you feel like you're "cheating", instead of just being able to say, this is the way it is? Diane: I think I've gotten to that point, but it took a long time to get there. I think I've totally accepted that this is the way it is. It alters your lifestyle. Like I said, I never was a big drinker but I would enjoy going to the city and watching a play and having a glass of wine or go to the bars with Wendy or something. And I would have maybe one glass of wine and I don't do that anymore. And I don't know if it's because it's not thrillling to me or I would rather go out to dinner than go sit in a bar. Dr. Clown: Did you feel that this whole good/bad thing made you feel like something was wrong because you were diabetic? Diane: No, not really. I've always had issues with weight. I've been on every diet known to man. That was harder to accept. And now it's like, this is me and I'm as healthy as I can be. And the doctor is not concerned about my weight. That was harder to accept, that I will never be this svelte little woman. And it's probably my age now and who gives a rat's ass? I'm healthy and I'm happy and it doesn't matter to me so why should it matter to anyone else? But you always want to be like everybody else. I think probably for children that would be really hard because they cannot do what all the other kids can do. Kids love junk food. That's another thing: I never have fast food in the house, it's horrible. Dr. Clown: What one thing would you say to someone who was newly diagnosed, knowing what you know now? Diane: That they have to accept it and take charge. Nobody can do it for them. And I think that's why men have a problem because their wives are supposedly doing it for them. My daugher-in-law's brother-in-law is diabetic. He does take insulin and he just does not socialize with the family anymore. And he has a big family and they have a lot of parties but he's never there. Because he can't handle it: the drinking and the smoking and the eating. So he just doesn't come anymore. And he's probably in his sixties. That's his way of dealing with it. I think he can remain in control as long as he doesn't put himself in these situations. And everybody knows it and accepts it and if he ever does show up, everybody says wow he's here. He really had to change his lifestyle, that's his way of dealing with it. Dr. Clown: How do you think a cure would affect you, if there was eventually a cure for diabetes? Diane: I don't know that it would make any changes now, because I'm so set in my routine. I think it would have made a big difference when I was younger because then I wouldn't have felt that I had any restrictions. And also now I think that there are so many foods that are available to you, fresh food is so much better now than it was. Even when I was a kid everybody ate canned vegetables and all that had sugar in it. I think life is a lot easier now. If you read your labels, then you read your labels. And I read the labels and if it's got less than 7 grams of sugar then I would allow myself to have that like some cereals and things like that. We have this retreat here and basically there's very little that I can eat. Like I can't stand oatmeal and that was one of them. And you know it's got brown sugar in it. And so that's where I was reading the cereal boxes and I had cold cereal. And they didn't have fresh fruit, they had canned fruit and I can't have canned usually. But I had a whole bag of fruit in my room that I had brought. And I went to Italy a couple years ago. I eat almonds and cheese if I hit bottom, it's what brings me back up. But you can't take cheese for three weeks in your backpack, right? So I used dried fruit which is pretty high in sugar. But we were walking constantly, so it kind of balanced out. They would go for the pastries, there were these Italian pastry shops and I never ever had the urge to ever...And they would say, it looks a lot better than it tastes. And I'd say yeah I figured. And the tiramisu, I really wanted some of that. But I also didn't want to get sick in a foreign country. So that was impetus right there for not cheating. But once again our meals were prepared for us, you just kind of have to go with it. And I did fine. If I had a choice of vegetables or pasta, I would take the vegetables. And then at the end of the trip, because dessert was always a big deal. And I thought, all I had to do was let the tour guide know and she could have ordered me a platter of fresh fruit every night but I didn't think of it until the end. When I fly I always ask for a diabetic menu and it's funny, it comes and it's not diabetic. You could ask for the low calorie one or the low fat one and you'd probably be better off because they'll put a cookie in there. That's not diabetic. Dr. Clown: Do you feel on the whole that there's ignorance as to what diabetes really is and how to help people with diabetes? Diane: Could be, but I think it's up to you to do it, nobody's going to do it for you. Dr. Clown: Anything you want to add? Diane: I'm not sure what your goal is. Is it education? Dr. Clown: Right now our site is education. And also I think, from talking to other diabetes, creating a place where people can go and hear other stories eventually share and start a support network. A way to talk to other people like yourself. Diane: I think that's important because it was like a 20 year proccess for me. Had there been something like that...and not knowing anyone else who was diabetic...it would've been a lot easier and maybe I would have gotten on the right track. I have the website for the American Diabete Association, I haven't looked at it for a long time, I don't know if there's anything informative. There's a place called wax orchard up in Washington and you can get the finest sugar free fat free chocolate you've ever tasted. It comes in a jar and it's all fresh fruit. Made with pear juice and I don't do it now because I'm really trying to watch my weight, but a teaspoonful of peanut butter dipped in the chocolate--it's the best Reses peanut butter cup you ever had. People don't know about this place. Things like that. Where do you get your supplies? Kaiser's really good because everything's about 5 dollars. For some reason the doctors have never written a prescription for the lancet. And so when I went to get the test stripped filled the other day, I said I need the lancet. He said do you have a prescription? I said, I don't think so. So he looked it up on the computer, and I don't. So I paid $10 for my stabber, instead of 5. Now why would you prescribe the test strips and not the lancet? You can't use either one without the other. So it's just something the doctor forgot. I know that the test strips are 30 or 40 dollars a bottle. Or more, depending where you buy. So where are good places to buy these supplies? What if we set a way so that if you shop for your diabetes supplies on our website, about 10-15% goes to direct research for a cure? Would that be something that would hold an interest for you? Diane: It's bound to crop up in one of my grandchildren. My kids are between 34 and 40 years old. When they get cranky...I can see their personalities change. And I'm always bugging them, what's your glucose? I was really cranky, of course I had three kids and that would make you cranky, but I didn't have a lot of patience a lot of times. And now when I look back at it, I know it was because my glucose was low. I could get really testy sometimes. And I'm kind of known for being cool and laid back, things don't rattle me. But that's because I eat constantly. So I really expect to see it in one of my grandkids. I would like there to be future research. The disease in some ways is very personal. It's not a disease that anyone else can help with. There are resources but it really comes down to you making your decisions about how you're going to tend the garden. Deciding whether you really want to know about it , look for the signs and symptoms or if you're just going to let it run rampant and ruin things. It's a gradual thing. I don't think you wake up one morning and you're diabetic. And when I look back on my childhood, I really think I've always had this. I was never a very good breakfast eater, and I can remember I would get so frustrated, especially in math, because I couldn't do it. The teacher would go over and over it and it just would not connect. And so I grew up thinking well, I'm not really very smart. I then I found out yes you are, I'm not brilliant, but I'm smart. And I think it was because my glucose was low. Because then I'd go home and I'd eat lunch and in the afternoon I was fine. And I know now that 10 o'clock and 2 o'clock are my bad times. And I'm fine at night. But I could tell you that's it's ten o'clock, without ever looking, by the way I feel. Dr. Clown: I'm glad we met at 10:15 then! Diane: I had my banana yogurt before you got here. But you know there's only 2 yogurts on the market that are sugar free. When I was in Italy, the labels weren't marked, and so I would always get vanilla yogurt which was very good, I'm sure it had cream in it. The labels have made life so much easier. Dr. Clown: Thank you so much for your time.