Diabetes Story: How did my family react

Posted on October 2, 2011 by janekdickinson

Question #5: How did your family react to your diagnosis? How was this for you?

My sister made fun of me for having a bladder infection (the first attempt at a diagnosis, which was obviously incorrect), and my father gave me a hard time for going to the bathroom so much. I still give them a hard time, but they feel pretty bad about it, so I don’t harass them too much.

My grandfather once told me that they all thought I was dying. My mother said when they found out it was diabetes, they were relieved. Diabetes was something they could handle, although she also said they knew nothing about it.

My parents both told me that they took classes and learned all about diabetes. Dad said the nurse told them that it was their job to make sure I knew this was something we could handle. They must have taken that to heart, because I never got any other message from them (despite the fact that those words were never spoken).

My sister said she felt she had to take care of me and make sure I didn’t eat sugar, although no one had specifically told her that. My brother said he was jealous of the close relationship that developed between my dad and me. My dad took me to all of my appointments and he definitely took a leadership role in my diabetes management – he gave my shots for the first year, and took an interest in what I ate.

I preferred having my dad give my shots (the first year – after that I did all the shooting, but that’s another story). When my mom gave my shot it really hurt. I was very surprised and deeply affected when I learned that my mother felt she was bad at giving my shots and that she was very upset with herself for that. I think her lack of confidence in herself made her even less able to perform. All I knew is that it hurt when she did it. Now I know it’s like anything else – when we don’t believe we can do something, we aren’t very good at it!

My sister and brother both told me (much later) they missed having sugar cereal after I got diabetes. I was shocked to hear that because I don’t remember sugar cereal ever being in my parents’ house. They never said a word about it to me or my parents, which I think is pretty impressive.

In retrospect I know that my family responded to my diagnosis of type 1 diabetes in a positive and effective way. We were a family first; one that happened to include diabetes. Diabetes did not run our lives, and I’m very fortunate for all of that.

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Diabetes Story: What would I change?

Posted on September 28, 2011 by janekdickinson

Question #4: Would you change anything you have done to this point? What and why?

I don’t live with a lot of regrets. In fact, I don’t really believe in regrets. I can’t stand hearing, “If only…” or “I should have…”, etc. If I can’t get it back, I don’t want to dwell on it.

However, diabetes-wise, there’s one time period I would do over (except, of course, that I would not choose to go back in time), and that is the college years. I really struggled with food in college. I gained a lot of weight my first year, then got a little obsessive and took it off during the summer before and beginning of sophomore year. That year I truly experienced the “sophomore slump.” I had no idea what I was going to do with my life, I felt disconnected and pretty lost. My eating habits kind of got lost too.

I ate a lot of donuts and nachos in college. Eating in a cafeteria lent itself to overeating. Everyone knows that college life centers around food (and alcohol, but luckily I wasn’t a big drinker in college). My friends and I enjoyed many Domino’s Pizzas, and I spent much money at the vending machines (affectionately called “Vend-o-Land”).

My mother had warned me before I left for college that a former student of hers (she was a third grade teacher) had an older sister who ate candy bars in college and went blind. Don’t you think that went through my mind every time I visited the vending machine? Yes. But it didn’t stop me. The worst part was how I felt in the morning after eating too much junk the night before. We often joke about a “food hangover,” but it really is true. I remember suffering through early classes, desperate to go back to bed; thinking of my dad, who was a college professor, and vowing to never fall asleep in class.

I did start walking in college. And I never stopped taking insulin (although I didn’t check my blood glucose all that much). Still, if I could change one thing, it would be how I treated my body in college. Too much junk and not enough sleep. To all the about-to-go-to-college people out there, I hope you will have more respect for your bodies than I did. Take the time to walk or be active in some way most days. Eat some fruits and vegetables and cut down on the pizza and nachos. Be careful with alcoholic beverages and get enough sleep!!

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Diabetes Story: Hardest and best

Posted on September 26, 2011 by janekdickinson

Question #3: What has it been like to live with diabetes? The hardest part and the best part?

I have been very fortunate to have had a relatively straight-forward journey with diabetes, so far. My parents did not make a big deal of it when I was diagnosed (at least not in front of me), and I went to camp where I learned a lot and met many friends with diabetes. I’ve had wonderful diabetes care providers, and diabetes hasn’t stopped me from doing what I’ve wanted to do. I have always known, on some level, that I would be just fine.

The hardest part about diabetes has been 1) eating in restaurants or at other people’s houses – basically anytime I’m not fully in charge of the meal. In those situations I tend to overeat and underdose. I even purposely take more insulin than I think I’ll need, but I never seem to get it right when eating away from home. Add alcohol to the picture and I almost certainly don’t get it right.

2) Overnight insulin. I use multiple daily injections (long-acting and rapid-acting insulin) to manage my blood glucose, as opposed to a pump (see  To Pump or Not to Pump for an explanation of why). I have struggled to get the overnight dose right pretty much forever. I remember having trouble with Ultralente back in the early 90s, and I still struggle with Lantus. Part of the problem is that I tend to overeat in the evening, so I’m often chasing blood glucose at bedtime. But even last night, when I went to bed at 83 (after having treated a 62 with orange juice and nuts), I woke up 228. Go figure.

The best part about living with diabetes is that it has led me to many experiences I wouldn’t have otherwise had. Because of diabetes I met lifelong camp friends. Because of diabetes I have had a career in diabetes education and am now involved in leading and teaching the first-ever Master of Science in Diabetes Education and Management Program at Teachers College Columbia University. Because of diabetes I am in tune with my body and I take care of myself.

What about you? Hardest? Best?

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Diabetes Story: What I’ve learned from others

Posted on September 24, 2011 by janekdickinson

Question #2: Do you know anyone else who has diabetes? What have you learned from them?

I went to diabetes camp when I was eight and met many friends with type 1 diabetes. I returned to camp the next summer, and then went to a variety of different (mostly music) camps for the following nine years. In 1985 I returned to diabetes camp as a counselor and spent the next several summers working there in different roles (counselor, student nurse, nurse, then Clinical Director). As a staff member I was reunited with several camp friends who have since become lifelong friends.

The first person I met with diabetes – outside of camp – was a girl who lived in a neighboring town. I was going ice skating with a group of Girl Scouts, and someone informed me that a girl who also had diabetes would be there with her Girl Scout troop. I remember seeing her (after she was pointed out to me) across the way and wanting nothing to do with her. I never even went over to meet her.

When I was about ten years old, I met another girl with diabetes through the Diabetes Forecast (an American Diabetes Association publication that still exists today) pen pal section. We wrote letters to each other for a few years and attempted to meet in New Jersey when I was visiting my aunt and uncle there once, but it never worked out.

In late elementary school and Junior High, I was aware that another boy had diabetes, but we never discussed it even once. I think he moved away, because I don’t remember anyone besides me in my high school having diabetes.

In college I was able to get extra apples from the cafeteria to keep in my dorm room (because of diabetes). I remember meeting another student – a male – who also kept extra food in his dorm room. I never interacted with him much.

In graduate school I had a good friend (from camp) with diabetes. We spent a lot of time together, but rarely discussed diabetes. In my second graduate school experience, I had a roommate who had diabetes, but it rarely camp up.

The common theme is that diabetes has never topped the list for what I discuss with my friends. My friends who have diabetes (even those I’ve met since camp days) are my friends because they are people I like, trust, have something in common with and get along with. It’s not because they have diabetes. If diabetes comes up, great, but most of the time we just get each other without having to mention it. From my friends I’ve learned that diabetes doesn’t have to be the most important thing; that life is full and interesting and there’s a lot of living to do.

I also know many people with diabetes through my work. Because I live in a small town, I see them in the grocery store, post office, walking on the bike path, etc. Sometimes we discuss diabetes, sometimes we don’t. From my patients I’ve learned that everyone handles diabetes differently. Humor works for some, but not others. Some people are angry, and they have to work through that in their own way. I’ve also learned that how people handle their diagnosis makes all the difference in how they live with diabetes (and there’s research to support that).

There are many other people with diabetes in my life as well, and I learn from all of them. Sometimes I wish I could have a break from all the diabetes in my life, but I know it’s what I’m meant to do.

Who do you know?

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Diabetes Story: How it all started

Posted on September 21, 2011 by janekdickinson

One way that people with diabetes can discuss the emotional impact of their disease is to tell their “diabetes story.” I found nine questions in an article recently, that can help people tell their “diabetes story.”

Question #1: What do you remember about your diagnosis? Before, during, and after.

I was diagnosed with type 1 diabetes on a sunny day in June. I had taken a course of antibiotics for a supposed kidney infection, with no result. I had the classic symptoms: peeing all the time, drinking tons of fluids, wetting the bed, no energy. I don’t know if I lost weight, but I’m sure I wasn’t gaining as I should have been.

When we returned to the pediatrician’s office he checked my urine for sugar and sent us straight to the hospital. On the way, however, my mother stopped and bought me a milkshake for “being good.” Maybe it was a consolation prize. At any rate, I remember that I was wearing a blue dress. When we arrived at the hospital, a very old and scary nurse barked at me to take my dress off. I left my slip on and received some more barking.

I have no recollection of what took place between the “admission” (undressing) and arriving at my room, which was actually a ward. There were probably seven beds lined up in one room. There were windows to the outside and windows to the hallway. I met a 5-year-old girl (I was seven) who had a urine bag that she carried around, and she traveled by wheelchair. As I lay in the bed having an IV put in my arm, the little girl said, “Don’t worry, it hurts a lot more when they take it out.” GREAT!

I remember my parents visiting and then going to classes. I went to one class with them. It was in a fancy board room with a big table and a very heavy door. Being the last one to enter the room I decided to see if I could stop the door from closing with my pinkie. Nope. It closed, hurt the pinkie, and the staff insisted on having it x-rayed. They also insisted that I travel to the x-ray by wheelchair, so they took the one right out from under the 5-year-old. I felt very bad about that, but she didn’t seem to mind.

I remember turkey sandwiches on white bread, Lorna Doones for snack, orange sherbet in a cup that arrived on a meal tray and was hastily taken away by a nurse who said, “you can’t have that!” I remember angel food cake. My aunts and uncles came to visit and I received a lot of presents. My uncle gave me some Diet Pepsi, which I liked and everyone was very relieved.

My favorite part of the hospital stay was following my nurse, Sue, around while she took vital signs. She let me go with her and watch. I adored Sue, and because of her, many years later I decided to become a nurse. I often wonder where she is now. I remember a “sun-room” where they had toys and games, and where my snack was often delivered. It was basically an expensive day care while my parents took classes – ten days I was there!

My most vivid memory of getting home is of a cupboard full of “plain” snacks like Nilla Wafers and Lorna Doones, and diet soda in the refrigerator (which cracks me up since we never even drank regular soda) – Fresca and Tab. I still drink Fresca to this day! My dad had created a “diet card” – a piece of paper with my 2200-calorie diet all written out with meals and snacks – and hung on the inside of a cabinet.

It’s interesting to write about my diagnosis. It’s not scary or overwhelming, because for the most part it was an ok experience. I find it interesting that I started writing like a seven-year-old after the first couple paragraphs. Hmmm.

So, what was your diagnosis like?

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We are not sick!

Posted on September 17, 2011 by janekdickinson

“There are lots of people who think they are sick and who are not sick.” – Dr. Charlie Mayo

People with diabetes are not sick. We are healthy people who happen to have a chronic condition. I get so frustrated when I see research studies advertising for “healthy subjects” and I am not considered “healthy.” I am discouraged when I get the impression that schools or employers or other agencies consider people with diabetes “sick.”

When I teach the family of a child with newly diagnosed diabetes, I emphasize the fact that he or she is not sick. He or she should be treated no differently than their siblings or friends who don’t have diabetes. I think it does a great disservice to people with diabetes (and the general public for getting the wrong message) when we are treated as different, weaker, or less healthy than those without.

And yet those with diabetes often perpetuate this thinking. By taking on the “sick role,” people with diabetes can mislead those who don’t know much about the disease. By pitying themselves or crying, “poor me,” and presenting themselves to the world as sickly, frail individuals, they paint a picture that is not one I want to be a part of.

I was once approached by a physician who was about to give me a new employee physical. She entered the room and said, “How long have you suffered from diabetes?” I answered, “I’ve had diabetes for twenty-five years, but I don’t suffer.”

But here’s my struggle: In order to secure funding for research; in order to find a cure so that future children and adults don’t have to deal with diabetes, we have to convince those with the money that we’re suffering. We have to emphasize the negative side of diabetes – the painful, inconvenient, expensive daily tasks; the deadly complications.

I recognize that these are incredibly important issues. I just cannot dwell on them in my daily life. I choose to align myself with positive thoughts and approaches. I work with many people who don’t feel this way. I do not discount their challenges with diabetes and with life. I believe there is a way to rise above, though. For some that may mean finding a counselor or therapist; for others a social group or one close friend; still others may need medication. Some people need to figure out what really matters in their life and turn their focus toward that. Whatever it takes, finding something or someone who helps lift us up and get us pointed in the right direction can make all the difference in our being healthy rather than sick.

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New Diabetes Drugs

Posted on September 16, 2011 by janekdickinson

What’s the deal with new diabetes drugs? Whenever I give a talk on diabetes medications to say, a group of nursing students, I groan when it comes to the type 2 meds and usually comment, “don’t blink; there will be a new one in ten minutes.” It’s crazy how many classes of drugs, combination of drugs, names of drugs, etc., there are. But keep in mind they all do different things and work in different ways. The more we learn about how the human body and diabetes work, the more types of drugs there will be.

So are they good or bad? Of course, it’s not that easy. Professional opinions are all over the place with respect to new diabetes drugs. Some providers jump on the bandwagon and start prescribing new drugs as soon as they’re out. Others are more hesitant. Sometimes they are skeptical about the effect of the drug, or they want to “wait and see” (some side effects don’t show up right away). I heard a family practice physician say once, “I don’t prescribe any of those new drugs because the old ones work just fine and they’re cheaper.”

Which leads me to the number one problem with new drugs: they’re too expensive. Many health insurance companies don’t pay for new drugs right away. And if a new drug is not covered (on “formulary”), it will be outrageously expensive for the patient. So is the answer to just not use them, or should someone be fighting for better coverage? On the one hand, we need people to use these drugs in order to find out how well they work. But do you want to be the guinea pig? Some people feel the research that is done to get drugs approved by the FDA is sufficient proof that it’s good to go. Others would like a little more to go on.

Sometimes newer drugs really do work better, and groups like the FAA, for example, take forever to approve them. This means that people who want to fly (planes) have to take older, less effective drugs in order to keep their license.

Many providers are still prescribing very old drugs, like sulfonyureas, for example, because they are cheap. Questions have been tossed around for years about how well these diabetes drugs work. But they’re still being used because they are cheap. We know for sure that sulfonyureas cause hypoglycemia, and sometimes excessive hypoglycemia and hypoglycemia that occurs at random times. We also know that people who take these drugs tend to gain weight. These are two great reasons to question whether or not to prescribe them for a patient. Hypoglycemia is dangerous (and annoying), and weight gain defeats every purpose of the person with type 2 diabetes.

New types of insulin have come and gone over the past 90 years. Rapid-acting insulin analogues are amazing and I don’t know where we’d be without them, but pregnant women didn’t use them for years – including me! In fact, I used an analogue after having my first baby and then went back to using Regular insulin during my second pregnancy. I imagine that would be unheard of today.

Thank you to the trailblazers who are willing to try new things. And thank you to the providers who are cautious on account of patient safety. Thank you to those who are working hard to find the next best drug(s).

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‘We Are What We Repeatedly Do’ –Aristotle

Posted on September 13, 2011 by janekdickinson

I want to share an article about goal-setting. Although the tips listed in the article were not all that new to me, it was good to read them again for reinforcement. Inside the article are links to more articles that also have good information (I recommend clicking on them).

The thing about goals is that they have to be yours. If someone else sets a goal for you, how invested will you be? If you set your own goals, clearly you want them to happen on some level. There has been so much discussion about goals in the last several years that it’s getting redundant and even boring. But goals really are important.

My high school friend had this quote in our senior yearbook: “Obstacles are what you see when you take your eye off your goal.” How true is that? Maybe you have one goal in life, for instance, to live with integrity. Or maybe you have several goals that you are working on at any given time. Goals provide motivation, and motivation helps us achieve our goals.

In diabetes management we use goals a lot. I insist, as a diabetes professional, that the people I work with set their own goals. It’s not about what I want – it’s about what they want. Figure out what your ultimate goal is (for example, “to see my granddaughter graduate from law school”) and then figure out what you have to do to make that happen (for example, “check my blood glucose daily, take a walk every morning, eat 25 grams of fiber every day”). Those smaller, daily “to-dos” are the goals you can check off every day. The big, ultimate goal is the motivator.

In the article I mentioned above, I especially like “Have grit” and “Build your willpower muscle.” I am constantly working on not overeating at night. From about 5pm to bedtime is a challenging time for me. Last night I thought about the “willpower muscle” and I exercised it! Once this becomes a habit, things get a lot easier.

Along the same line, one of the links in the article leads you to Tony Schwartz, who basically says that it all goes back to “practice makes perfect.” I believe this is true for diabetes management as well. If we keep working at it – whether that’s preparing healthier meals, checking blood glucose routinely, exercising more often or more intensively, or something else – we can get really good at it (and achieve our goals).

I increased my walking to six days a week this summer (from four). In the past two weeks I’ve started jogging, because I have a goal of running a 5K with my daughter in early November. Keep in mind that I am NOT A RUNNER. I am now up to two minutes of running! Anyway, I really think there is something to all this goal stuff.

PS I looked up the quote above, and it turns out it was by Henry Ford, but a slightly different version.

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Painful Perspective

Posted on September 11, 2011 by janekdickinson

Today is a different day. I can’t really find the right word for it. Different is what came out, but it’s also sad, quiet, somber, contemplative, questioning, remembering, difficult, and so much more.

I was in Colorado on September 11, 2001. I had a baby boy who had turned one exactly six days earlier. I was standing in our family room, behind the couch, when I answered the phone and was told by a friend to turn on the tv; that terrorist attacks were taking place all over the country. One of the moments Americans will never forget. I will never forget.

I grew up on the east coast, so I wondered who I knew. Did I know anyone on one of the flights? Or in the Pentagon? Or in the towers? I immediately thought of my high school friend, who had once worked in the Financial District in New York City. How many people did she know who were directly affected by the tragedy? I thought about the people on those planes and how incredibly scared they must have been. The brave responders who helped out in whatever ways they could (trained or not).

Today I’m mostly thinking about Rick Thorpe, because he turned out to be the one person I did know who was killed on 9/11. Of course, I’m thinking about all the victims, survivors, and families. But Rick I can put a face on. He grew up in my hometown and graduated from my high school in my sister’s class. Although I probably never had a conversation with Rick, I do remember him. He had a baby daughter, who I think about, and a wife, parents, siblings, friends.

Rick’s family and friends rose above the pain of losing him to this awful event, and created Rick’s Place. This is an organization that helps kids who have lost a loved one. I’ve known kids who have benefitted from programs like Rick’s Place, and I am comforted to think of all the kids – who shouldn’t have to experience such pain – who will learn, grow and succeed, because of Rick’s Place.

Recently I was at a meeting on one of the top floors of a huge hotel in Las Vegas, when the fire alarm sounded. I couldn’t take the elevator and I had no idea where the stairwells were. My mind flashed to what it must have been like for the people trapped in those towers on 9/11; not knowing whether to go up or down.

There was a post on facebook today about how having diabetes isn’t so bad when compared to something like 9/11. I couldn’t agree more. An event like 9/11 gives us perspective. Although diabetes definitely has its annoying and even sometimes scary moments, to me, it doesn’t come close to what I imagine was felt in airplanes, towers or Pentagon. I have the tools I need to make decisions about blood glucose, medications, exercise, and food. I wish we didn’t need this kind of reminder, but I hope we can learn from it.

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CACTI Study

Posted on September 8, 2011 by janekdickinson

An article reporting findings of the CACTI study caught my eye because I participated in this study for about seven years. CACTI stands for Coronary Artery Calcification in Type I (sic) diabetes. The article reports that adults with type 1 diabetes are likely to experience coronary artery calicification, and therefore, negative outcomes related to coronary artery disease, despite managing the ABCs of diabetes. They also mention that a coronary artery calcification (CAC) test is relatively inexpensive (I thought it was around $400, but the article says $100), and that people with type 1 diabetes should have it done before the age of 30 and then every five years to monitor.

Any time I hear/read that something negative happens “despite managing diabetes,” I get all tensed up. What do you mean; we do all this work and bad things still happen? That makes no sense. There’s got to be a better answer. Personally, I always go back to positive attitude, which I truly believe is just as (if not more) important as A1C, blood pressure and cholesterol (the ABCs of management that the article refers to). But what else can we do?

I have been taking omega-3 fatty acids (fish oil) for years. I take these huge, smelly capsules daily to protect my heart. I also take a supplement that is full of antioxidants – it’s basically a bunch of berries in a capsule (no joke). I feel I’m helping myself out by taking these, even though I’m not a supplement junkie. Oh, and I also take vitamin D. When I read that low vitamin D level is a risk factor for progressive coronary artery calcification, I was relieved that I already take vitamin D! Finally, I walk. Walking is a great, relatively low-impact physical activity that keeps my blood circulating through my body. It helps my blood pressure, cholesterol, stress level, blood glucose, weight, and most of all, it helps keep my attitude positive!

What do you do to protect your heart?

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