Personal Health Stories

Judith's Story

“In 1990 I was diagnosed with Lupus. I was smart, saw a doctor regularly, had good insurance, but still I struggled to get the health care I needed. Soon, I was in a wheelchair, uncertain if I would or even could walk again. Then I realized It’s up to me. . . I needed to take ownership of my health. I needed to take the lead, question what to expect, educate myself and develop a partnership with my doctor.”

Getting peace of mind about health care begins largely with finding the right doctor - one who values relationships based on openness and trust and provides high quality care.

“Mention everything that is a concern or question. Everything is important. My advice… know your family history, get screened, establish a good relationship with your doctor.”

To watch Judith's story, click here.

Ken's Story

“While traveling on business I became very ill. I called my doctor and he told me to go to the emergency room. He suspected diabetes because of my family history. Tests confirmed his suspicion. I needed to learn to live with diabetes. It’s definitely hard but it’s not rocket science. When I eat right and test myself four times a day, I feel good.”

Quality health care happens when people take an active role in their own care, becoming partners with their doctor to create a more effective, trusting relationship that helps them stay healthy or determine the right care when they need it.

“My doctor is my coach. I trust him with my life! We talk about goals. He pushes me when the numbers aren’t so good and celebrates with me when they’re good. We’re working right now to get my weight down, getting my cholesterol down. I’m trying but it’s a challenge.”

For more information about partnering with your doctor, like Ken did, click here.

Lori's Story

“Right now I have degenerative disc disease. It’s been going on for about a year but probably goes back to a car accident in 2001, where I was injured enough that I ended up retiring early from my career in nursing. It was very hard because I had to stop doing a lot of things that I used to do.”

“The orthopedic doctor told me that I would probably have to have spinal surgery if it got worse and if the pain was too hard. So then I started coming to Dr. Ziegler for acupuncture to see if I could relieve some of the symptoms and put off this suggested surgery, because the spinal fusion they want to do, it breaks down above and below it. “

Quality health care happens when people take an active role in their own care, becoming partners with their doctor to create a more effective, trusting relationship that helps them stay healthy or determine the right care when they need it.

“I've chosen my doctors very carefully. Dr. Ziegler is really good. She listens. I'm very particular. I want somebody that's going to listen. I always have a list of questions, have you seen this, have you heard this, do you think this would work, uh, what are your views on this.”

“If you find somebody that doesn't listen and you're not comfortable, then you need to research and find somebody that you are comfortable with, because this is your health. You need to take charge. Unless you’re specific about what you want, you’re not going to get it.”

Future Doctors Story

Today, medical schools across the country are showing future doctors how they can make improvements in caring for patients, so that people receive better care and have closer relationships with their doctors.

“We're lucky to have a very active clinical competency center where we teach students to interview patients and examine them, right from day one of their medical school education”, says Dr. Andrew Symons, the Vice Chair for Predoctoral Education at The University at Buffalo.

“The first time you see a patient, you're so nervous,” recalled Lynn Yen a fourth year Medical student. “It really takes that full four years for you to realize that it's that communication part, that part when you sit down and you're face to face with somebody else who's going through a struggle and you are there to be a support system, and to help guide them through that struggle.”

“I think the realization was probably over the past two decades that those first two preclinical years need to have patient contact right from the beginning, so we introduce them to patient contact from the first week.”

“We have a very active clinical competency center - it looks just like an exam room. Cameras are used for viewing the sessions and students are instantaneously evaluated. We train people from the community to portray patients with a medical complaint. These standardized patients help the students practice. It’s very helpful for a student to be able to get immediate feedback on their performance.”

“Patients enjoy knowing that the future generations of doctors are being trained to communicate better.”

Today's doctors are learning how to be better healthcare partners.

To learn how you can better partner with your doctor, click here.

Interested in learning more about medicine without enrolling in med-school? Check out UB's Mini-Medical School

For more information about UB's School of Medicine & Biomedical Sciences, click here.

To watch the Future Doctors story, click here.

Deborah's Story

“It started right after my blood test . . . I had type 2 diabetes, which seems to be all the rage these days because everybody's got it. And that upset me very much. When Joanne, my nurse practitioner, told me I wasn't shocked. I was more dismayed. And she said, Deb, we'll get through this, because that's what she always says. And we did. “

“I cried for a good two, three hours, and then my partner Sue and I sat down and talked about how we could change things. I dug my heels in, and we decided that we were going to change everything, and that's everything. No more eating out like we used to, changing our food, exercising.

“It was incredibly hard, and then it got easier and that made me think I could conquer the world. It's a lifestyle. It's not a diet or fad. It's not something that's going to stop anytime soon, because it's too important that I'm able to move around. And, and I'm moving better than ever. I started at 200, and I've lost 30 plus pounds. I couldn't do it if it wasn't for support. Sue and I, we grew fat together. She has helped me, and I've helped her. We've been successful and we see ourselves being successful down the way.”

“Joanne told me I will never be cured because I have high sugar levels. But if I can keep doing what I'm doing, I can manage it, and I can stay away from insulin, and that's my main goal-- not to be insulin- or medication-dependent.”

“It all starts with you—you are the one that's in control of your own destiny”

Ann's Story

“I knew I had osteoporosis, but I thought I was handling it well for 11 years by taking Fosamax religiously and I exercising vigorously and as much as I could. The doctor had me do another bone density test, and the osteoporosis had advanced tremendously in the last two years. So he said I had to go on a daily injection called Forteo. I couldn't find anybody else on it. I was, petrified of giving myself a shot every day. I was just very, very upset.”

“I believe in doing everything you can to decrease the advancement of your disease. I heard about this Healthy Living Program through a mailer from my insurance company. It was put together by some people at Stanford University and it sounded very, very interesting. So I asked my husband if he thought we could consider going and I thought, well, we'll go there and just see what we can learn.”

“We went, and we were very impressed. It focuses on everything you can possibly do to make things better; while showing you what causes things to deteriorate.”

“This course, this six weeks just brought so many things into focus in a different way. We do the action plans, we problem solve. Those action plans to me were just worth their weight in gold. We brain storm. No ones going to do these things perfectly all the time and your life isn't going to go smoothly—especially when you're dealing with a chronic condition. So when you don't succeed they have taught you all these problem solving steps” 

“I knew attitude was important. But it's a difference in knowing that attitude is important in theory, and listening to other people with chronic conditions and how their attitude has helped them. There's nothing like listening to someone whose been there and done that and how they've done it.”

“It was just so enlightening and so encouraging. The last day, they asked if anybody would like to go a course to learn how to be a facilitator for this type of program. And I wanted to do it very, very much. It was very exhausting, informative, fantastic training. I was with positive people and I was learning how to facilitate and try to bring positive experiences into people's lives with chronic conditions. I want to be proactive, and they're helping me be proactive.”

“You have to realize when you have a chronic condition that you have the condition. It's your responsibility to get the help you really need.”

For more information about goals and action planning like Ann did, click here.

For more information on the Chronic Disease Self-Management Program from Stanford University, click here.

For more information on Independent Health's Healthy Living program, click here.

Explore the health and wellness programs, resources, information and tools offered through your insurance provider—

BlueCross BlueShield of Western New York

Independent Health

Univera Healthcare

Scott's Story

“I started recognizing that I didn't feel quite right. I was extremely fatigued. It's an unusual place to be when you feel like there's something wrong but you can't get any confirmation.”

“I went through a few family physicians because they sent me home and told me, ‘I don't think there's anything wrong, I think that it's stress or you're overworked or we can't really find anything.' But you know when something's not quite right. There's a difference between fatigue and exhaustion. It was a year and a half before I was diagnosed.”

“As far as I knew, I was a pretty healthy guy . . . that sort of changed all of a sudden. In December 2005, my primary care physician had some test results from my blood work and said, ‘I need you to go see a hematologist and get these interpreted.' The hematologist said, there's no question --you have multiple myeloma. “

“What's the next step after someone tells you, geez, you have this unusually rare cancer that affects a few people in 100,000 and we do not have a cure? You educate yourself. I learned though questioning and took charge of my care from the very beginning. At the same time you sort of huddle your resources-- your family, your community, your friends, your church, and you try and find the support that's necessary to deal with the fear and the complexity and the general sense of disorder.”

“My wife, Lu, suggested Gilda's Club. It has become our lifeline. I walked into a wellness group, and there were people there who I knew could understand . . . other people who have actually been through very similar if not the same treatments that you've been through.”

“The one thing lacking was not information, as an engineer I'm a wonderful gatherer of information. It was that sense of security that you're not alone. Gilda's introduced us to a whole group of people who were just as afraid, just as derailed. And we teach each other. It's a double-edged sword--you lose some very dear friends in the process, but you also gain some phenomenal support and information and a sense of community that you don't get anywhere else. There are caring, loving people all over this world that are willing to help you with whatever you happen to be going through. And a lot of it comes down to being able to ask for that help.”

For more information on finding resources and support like Scott did, click here.

Betsy's Story

“We were taking Bets to the doctor just for her annual physical, and she was not feeling real good for couple days, but I thought maybe she had strep, which she got frequently. They tested the urine for protein, like they usually do as part of the physical, and once they did that, they realized something was wrong. When they tested her glucose she was almost 400. So they said, to the hospital, and that's what we did.”

“It was scary at first, but, the hospital was great. They immediately knew it was diabetes. She ended up in the hospital for six days. The clinic at Children's Hospital was really helpful. They were able to walk us through it and explain what we needed to know. They taught us how to do injections, taught us what to watch for and kind of ran through what's a high blood sugar, what's a low blood sugar, what's okay and not okay. It was a learning experience to see what you have to do to keep her healthy.”

“Bets is a type 1 diabetic, which means basically her pancreas has shut down. Even, you know, if she does really well with her diet, she's still going to have to take insulin all the time. It was a learning experience to see what you have to do to keep her healthy and she had to be a part of that. She had to understand how to read the labels. She's been great with it really, better than I am sometimes, reading the labels and recognizing a good food versus a not-so-good food. “

“We keep a close eye on her. We test a lot. She has to have insulin for every meal, plus she also has to have another shot of insulin in the evening.

So our schedule's changed a little bit. She's done really well at being able to figure what's appropriate and, when to eat and things like that. And sometimes she helps to keep the whole family on track. We have to eat at certain times and that's not always easy to do with three teenagers that all have different schedules. I think it's been actually pretty good for everybody. It's a lot healthier diet.”

“It's pretty much all about communication because she needs to be able to, you know, tell us what's, what she's been eating and how things are going and how she's feeling. She plays basketball. She was on swim team.

She's been pretty active, and we want to keep that up because it's good for her, but then you have to count on coaches and things like that to help keep an eye on her. We've also had terrific support at school. Her school nurse, just everyday she calls met to let me know what her blood sugar is before lunch.”

“You're always packing things up and kind of calculating in your head, what do I need to have with me and what happens if I forget this? And checking out Grandma's fridge to see if she's got juice and things like that. It becomes a pattern. It also helps that Nick Jonas is diabetic. Right from the beginning, that's one of the first things she told me –‘You know, I have the same thing Nick Jonas has.' So, from an 11-year-old's point of view that's pretty cool. She doesn't complain. She has just kind of understood this is part of what you do.”

To find out where to find resources and support like Betsy and her family did, click here.

Learn about diabetes from Kidshealth.org

Connie's Story

“My doctor had said, ‘Your sugars are high, you're bordering on diabetes', but he never really explained what that meant. And foolishly, I didn't say what does that mean, because you expect your doctor to tell you all. So you go home and you eat less and maybe you walk an extra little bit, but that wasn't really what needed to be done. It needed to be more intense. I thought, maybe someday I'll have diabetes, but it really didn't feel like it could ever be me.”

“Then last May when I went for my check-up the doctor got very furious with me. He looked up and he said, ‘You are now officially a diabetic.' I was very shocked when I heard that. When you get any kind of news like that, you start not really hearing everything, so I was real careful to listen to what he had to say, which wasn't that much. He went out of the room, and he came back and handed me a glucometer and said, ‘Someone from this office will call you but I want you to start taking your blood and go on a diet and get some more exercise'.”

“I went in my car, and I sat there and I cried. I really felt quite lost because who was going to help me and how was I going to get through this? I pulled myself together and I went home, I decided I needed to really take a hard look at what diabetes was, and I hit the Internet, started reading. I thought I knew something about diabetes but I found out I knew nothing. I knew that diabetes was a terrible thing to have, but I didn't realize the complications that come along with the disease.”

“Well, then no one calls. After 10 days I called the doctor but still no return call. I wait about two, three weeks. I remembered that a cousin of mine was a dietician. I asked, what would you do if this happened to you? She told me to talk to the nutritionist at her hospital. She told me to talk to the nutritionist at her hospital. I made an appointment to learn how if effects my health and it all started coming into place—eating, testing, and overcoming side effects. I needed to know what was I looking for, what was I shooting for, where was I trying to go.”

“I really think I got emotionally attached to my disease, and just took it from there. I needed to harness myself so that I could avoid any complications down the line. While I'm shopping, I'm always cognizant of the total carbohydrates on any food label. I am now fully arming myself with the knowledge of what I'm putting into the foods I'm cooking.”

“After all of this I composed a letter to my doctor to explain that I felt abandoned. I wrote the letter half out of frustration and the other half was to help others. I planned on presenting it verbally and then hand him the letter so that he would never forget. I really would hate to see another woman or man be diagnosed with diabetes, go home and say, well, I didn't hear from anybody, maybe it wasn't so bad, so I don't have to do anything. I had made up my mind he needed to know I was not taken care of by his office.”

Dr. Cange's Story

“I went to work one morning and as I'm pulling into the hospital's parking lot I had severe chest pains--squeezing, heavy pressure, I couldn't breathe. I began to sweat. I began to get nauseous. It went up my neck and down--the classic angina symptoms. It was the worst pain I have ever had, and I knew that something was wrong. If I didn't respond to it, it would have led to a heart attack. I went upstairs to the emergency room, told the doctors what happened, and sure enough, they issued blood work, did a EKG, gave me some morphine for pain, some nitroglycerine and the cardiologist came down and see me. Eight hours later, I was having open heart surgery.”

“I was overweight and I had high cholesterol. Every time I went to my doctor, and I'm ashamed to say this, he always talked about my weight. I would lose five; he wanted me to lose 10 or 15. The most important thing though, was my family history. My father had a heart attack, I think he was 46. Same thing with my grandfather --basically the males in my family had cardiovascular issues in their forties. But I figured, you know what, I'm 40, I'm on medication for the cholesterol and it was controlled. I thought my chances were pretty good. They were not.”

“My background is from the Caribbean —fried food, rice, plantains, pork, beef--that's what I was raised on. I thought that it would have been very difficult to change that. Change it and live, don't change it and die. The choice was clear.”

“We've slowly changed our diet. I thought the changes-- going from white bread to whole wheat and whole milk to skim milk would be a big issue for the kids, but they really didn't notice. I think cutting out the fried foods and the fatty foods, adding fruits and vegetables and fiber, portion control, and exercising --those were probably the main things that made a difference.”

“I had the surgery January 30th, and I finished rehab the last week of March, and went back to work April 30th when the weather was nice. I could go for walks every day. I'd walk everyday during lunchtime. I find bicycling around the neighborhood peaceful, rejuvenating, and I enjoy it. I wake up at 5:30 every morning and that's when I exercise now. It's not easy, but it's not impossible to find an hour for yourself during the day.”

“You cannot go through life without stress; especially as a physician. You're responsible for people's lives. Just because you're used to working eighteen hours a day doesn't mean it's healthy. The first thing I did, I cut back on the hours. I left the group I was with and went to a smaller practice. “

“My patients have encouraged me with the weight loss; teasing me that they want me around. It hits home with patients, when you share you're story. I am more aggressive now, and I use myself as an example. I tell people what happened to me. And I said, look, it could happen to you if you don't do what I didn't do, if you don't exercise, if you don't take your medications, if you don't eat right. It could happen to you. I'm living proof, but I'm here. “

For more information about your role in getting quality health care, click here.

For more information about goals and action planning like Dr. Cangé did, click here.

For information on partnering with your doctor, click here.

Helen's Story

“The Patient Empowerment Program was brought to Jordan Grove Baptist Church to help us better help ourselves when we go to the doctor. After Lois became our parish nurse, she set up these sessions to try to empower us to know what we are supposed to do about our health. She stressed the importance of paying attention and being alert. If I feel like I'm not being heard it's my responsibility to bring it to the doctor's attention.”

“The session was very informative. We talked about possible questions to ask the doctor and some of the possible answers. Sometimes the doctor will run things by so quickly, because they have to keep a schedule. We must take charge of our own health. Lois says, prepare yourself, get your questions down, know where your aches and your pains are, and when you get to the doctor, if you think that you are going to forget it, put it on a piece of paper and then you can just put it in front of the doctor and say these are my concerns. Preparation in anything will guarantee you to a certain degree a better chance of coming out understanding and knowing more than you did when you went in.”

“At one time, I would just go to the physician and I would just take what he or she said and I never really gave it too much thought because we always said the doctor knows what he or she is talking about. Now I know my role as a patient in that partnership is to be able to connect with my physician. If my physician comes up with a big medical term and I don't understand it, I will immediately say, ‘Can you break it down in lay term?' I don't care how large a word is or medical term, there's always a smaller word for it.”

“At a recent doctor's visit I was given a sample medication that did not agree with me. I hadn't even heard the name of it, and there were no directions on the package. I should have inquired a little bit more about it. I blame myself—I'm intelligent enough to ask . . . but I didn't. I called Lois and, and Lois went on the internet and she found some information medicine. They say you have to give it some time to work through the system, so I continued to take it, but it still made me jittery and nervous. I knew I had to turn it loose, but I didn't just get off it on my own. I called the doctor's office and I gave them the symptoms. So I was told don't take it.”

“Lois offered to go with me to my next doctor's appointment. She was there for backup—an extra pair of ears. What you don't hear the other person might be able to hear.”

“Never lose your focus on what your purpose is for being at the doctor, and that is for to get the best care that you can get. Sometimes things do slip through the cracks, but there won't be a slip anymore. Now I know that if I'm given any medicine I'm going to ask questions first and take the medication second.”

Learn more about quality health care click here.

The Patient Empowerment program Helen participated in was put together by the National Partnership of Women & Families.

For information on what quality health care means, click here

Kathy's Story

“The town was offering a series of workshops to current and retired workers. I'm a union officer, part of the police union's benefits negotiation team, and I thought it would be a good idea to go to the retiree meeting that was held first, to see what it was all about. I was hoping to see something that could possibly be a win-win for all of our employees. My mother and I went to the first workshop together and I was wowed by it.”

“The presenter, Marge, began with some questions: Why do you go to the doctor? Are you going for social reasons? It made me think; I've gone to the doctor and found myself not having all the answers to questions she asked. I've taken over-the-counter things like aspirin, eye drops and fish oil pills, but I've never considered them medicine. I never thought to include them when my doctor asked me about medications I was taking. It really made me think differently about my role in healthcare. She talked about prevention, knowing what we are at risk for, preparing for doctor's visits and how the information we share with our doctors can impact the quality of the care we receive.”

“Now I have a book where I keep all my information, everything from a list of my medications and allergies, my family health history, personal health history, to copies of my diagnostic tests and questions for my doctor. I didn't have a place where I kept all my records before. I feel more educated going to the doctor now. Everything is listed right in the book.”

“I knew some of it like the health history, but now I've, asked my mother a little bit more. I've found out about my great-grandparents on my dad's side. Now I'm more aware of what I'm predisposed to. I was happy to have my mom be a part of it. Like a lot of our retirees, she goes to the doctor a lot more. She can keep all of her papers in one place, healthcare proxy information in one place. And if something was to happen, where she wasn't able to help herself, I could grab that book and go.”

“I think people take healthcare for granted. You assume, you pull out your insurance card is and you think, okay, here you go, this is taking care of me, but it really isn't. It's just a part. This'll pay for it, but we need to be more active in our care.”

“The workshop has a lot of information. I went back to the union president and said this is something we'd really like to have at a future union meeting for our membership. We have a big group of blue-collar workers in our union. A lot of the guys tend to joke around about prescriptions or going to the doctor. A lot of people are afraid. We had a great turnout at our meeting. A lot of the employees were talking about getting their wives and families involved.”

“When we negotiated our last contract, we were looking for the best plan we could possibly offer the employees. We're experience-rated now and that means we each have to take a more proactive approach to when we go to the doctor and to try and really watch our health and take care of ourselves. The town has really embraced wellness and prevention and this workshop is a part of that. We're trying to get people to be more active and just more aware of what they're taking and what they're doing to their bodies.”

“I feel more educated going into the doctor now. I just feel confident and more involved in the process.”

For more information about your role in getting quality health care, click here.

For information on partnering with your doctor, click here.

To learn more about creating a personal health record like Kathy did, click here.

Kevin's Story

“I’m type-1 diabetic. Somewhere down the line I may have been genetically predisposed towards type-1 diabetes, or as my doctor would put it ‘You just have bad luck.’ It just happened out of, out of nowhere.  It started with blurred vision. I had recently been corrected to 20/20 at the ophthalmologist and out of nowhere I had trouble starting to see the TV.  At nighttime, I had great difficulty driving home.  I just thought it was nothing, and a couple days led to a week, and I said, there’s something wrong here and I made the appointment with my doctor and got myself right in.  I also had the classic diabetes symptoms of increased urination and thirst.”

“Nothing jumped at the physician’s assistant because my blood work hadn’t come back yet.  I just didn’t fit the prototype diabetic patient. I had always tried to keep myself in shape through physical activity and healthy eating.  And I was older than the typical patient diagnosed with type 1 diabetes.  Within 24 hours, my blood work came back and my sugar was well over 500 so I was sent to the emergency room.”

“I have type 1 diabetes.  All of a sudden my pancreas abruptly stopped producing insulin.  I immediately sat down for a lesson with Dr. Dilamarter and his nurse, Anne, and went through a two-hour training period.  It was kind of like a crash course.  I started administrating insulin, and she schooled me on all the different things that I would have to do with diet.” 

“I was overwhelmed for the first 48 hours, totally overwhelmed with everything I had to do. I was almost in tears the first night I went into the pharmacy and I handed the pharmacist six different slips, and they’re asking me questions about it, and I didn’t know.  I didn’t even know what insulin was.  I had no conception of sugar levels. I had always been a big carbohydrate eater, so I’d been like feeding myself all kinds of carbs, you know, pumping myself up with sugar, and my pancreas was taking care of the sugar for me, but all of a sudden my pancreas abruptly stopped and now I had to change my diet and inject myself with insulin to take care of any carbohydrates I eat.  I had to learn from square one.  I decided that I had to run with this. I had some past experience with friends, one of whom passed away that had diabetes. I also had co-workers that I know lost limbs to this disease. I immediately recognized the fact that I had to get control of this disease, that I could not let this disease control me.”

“It was overwhelming at first.  A high sugar level would mean a complication down the road of various other related diseases, and a low sugar level could put you into a diabetic coma.  So I had to strike the balance between a high and a low. Over the course of, say six or seven days, I managed to experiment with the various food groups to see what a particular food would do to my sugar level.  I changed my diet around from being carbohydrate-based to protein-based with a lot of complex carbohydrates and fruits and vegetables.  I never really paid attention to portion sizes.  I found that physical activity would drive my sugar levels down.  I probably tested my sugar too many times over this period, but I had to find out what a particular food group would do to my level, whether it drove it high or whether any corresponding physical activity afterward drove the number down.  And within a week, my numbers started to come around.  I just continued to experiment with the different food groups and see what they did to my number, and actually track the number on Excel spreadsheets, as crazy as it sounds.”

“I’m checking myself four times a day. And I’m sitting on every piece of food that I digest so I know exactly what that’s doing to my sugar level.  I do all kinds of activities.  I walk every morning with my dogs.  I kayak once a week.  I golf two or three times a week.  I’m always out in the backyard walking around, hitting golf balls.  I’m just constantly doing physical activity, so that part was not an adjustment for me.  I always make sure that I have something in my pocket in case I ever experience a sugar letdown.  I can feel the number getting low, so I always make sure I have something to eat in my pocket.”   

“I’ve been taught by my doctor and his staff the importance of monitoring all of the numbers related to heart disease.  There’s a correlation between high blood sugar and heart disease.  My Doctor has told me that I have the lowest cholesterol in his office.   Based on the change of my diet, my blood pressure has come way down.  I’ve lost 20 pounds accidentally, just by paying attention to what I eat. It’s actually gotten me down to my fighting weight. I had an A1C level taken when I wad diagnosed with diabetes four months ago, and it was 10.2.  I just had my return visit to the office, and it had been driven down to 6.9.”

“It is so routine for me at this point, I don’t even think about it anymore.  I may unique in the fact that I’ve been able to like control this disease from the get-go.  And I really haven’t had that many problems to date.  My wife, Joanne.  She’s been right there for me, my mainstay on the home front.  I know that Dr. Dilamarter and Anne are just a phone call away.  They’ve always been there for me. I’m the one that controls every bit of food that come, that goes into my mouth.  I’m the one that can drive a high sugar level down by going out and doing some physical activity.  So, all the support in the world can, can help you and assist you, but unless you actually do the work, uh, you’re not going to control this disease.”

“When I was first diagnosed with diabetes it’s like somebody telling you that you have a terrible disease.  It’s something you never want to hear. The most important thing is that you have to understand that you have the disease.  Do not go into self-denial.  Don’t pretend like it’s something that the doctor is going to fix for you.  It’s a very controllable disease.  It should have minimal impact on your lifestyle if you just pay attention.”

Learn more about different types of diabetes, click here.

Learn more about guidelines for diabetes care, click here.

Learn About Type 1 Diabetes from the American Diabetes Association.

Learn more about food, exercise and diabetes like Kevin did.

Explore topics on Food & Fitness from the American Diabetes Association--including Recipes, What Can I Eat, Planning Meals, MyFoodAdvisor, Getting Motivated, Ideas for Exercise,  and Fitness Management.

Roosevelt's Story

“A number of years ago, my primary physician at the time used a term which made me think that I was getting close but I didn’t have diabetes.  Borderline diabetic, that’s the word.  It really didn’t register to me what he was telling me. He put me on a medication, but I didn’t understand what the nature of the medication was. I didn’t think I had to do anything.   I guess through taking the medication and doing exercise with my job that I managed it pretty good without me knowing that it was being managed.”

“Then I had a bout with prostate cancer and I stopped doing everything while I was going through that.  Once I got through that Dr. Dilamarter, my doctor, called me in and said, you know, we, we didn’t do your, your checkup last year, you know, we, we really need to get that done, we need to get your blood work done.  I was in no hurry.  I didn’t, I didn’t foresee myself in being in any, any danger.

“Dr. Dilamarter was telling me I had diabetes and it just wasn’t registering. And then my wife started asking me, ‘Are you listening to what he’s telling you?’ And I’d say, yeah, I’m borderline diabetic.  So to me, that means I don’t have it yet.  And then I started having real, real bad problems with my vision.  I mean, it was terrible.  I went to Dr. Dilamarter and I told him, you know, I’m having real bad problems.  He told me that I had some enzymes in my kidneys that shouldn’t have been there.   And that day, when I went in there, he really got my attention.  I got the, ‘You really need to do this.’ He said to me, ‘I can’t help you unless you help me to help you.’  And I said, whoa.  It was so serious and just the look on his face told me, you’re a diabetic and you really need to do this.”

“He gave me a lot of things to do.  Boy, it was so many things. I almost felt overwhelmed, but I said I was going to give it the best shot that I had because I couldn’t let this man care more about me than me caring about myself, and it was obvious at that point he did. I started doing the things that he told me to do.  I went and got the blood work done and I got the yearly eye check.  I started exercising.  I do my testing, take my medication and monitor my blood pressure. I keep a journal of all the numbers. I’d been trying to quit smoking for years and had never accomplished it, but apparently prior to this, I must’ve not have given it the effort that it needed because it was easy.  The hardest thing probably for me to do was to adjust my diet.  I’m an eater.  I love to eat, and I have excellent, great cooks in the family.  That one was tough.  I’m educating myself on how to, to eat correctly.  I think it’s a little difficult for my wife.  She’s trying to figure out what’s going to be okay for me and what I like.”

“Anne Miller, the nurse in the office, has really helped me. I learned more about what diabetes was and how it affects the body and things to stay away from and the things to gravitate to.  It went beyond just the eating.  Anne has helped me out with a lot of things, how to do my testing, how to order my suppliers, and how to choose good foods when I travel.  So much came at me at one time I felt like I needed a tape recorder so I asked my wife to come along with me.” 

“When I started getting the information about what you can’t eat and what you can eat pasta was one of the things on the list that I should stay away from and I love spaghetti and macaroni salad. I’m a pasta kid. I got to the point where my wife would make spaghetti and I wouldn’t eat it.  I said, I’m supposed to stay away from pasta.  She said, no, ‘You can eat spaghetti, you can eat my spaghetti.’ She called Anne, and she told Anne that I wouldn’t eat the spaghetti, and Anne sent me some more information and she put a little note in there-- Roosevelt, you can eat your wife’s spaghetti, you just have to watch the portions.”

“Apparently the blood sugar isn’t the worst of it.  It’s all of the things that, that’s, that happens because of it, the heart attacks, your kidneys, you vision. There are far-reaching complications that can kill you, if you don’t get right on top of it.”

“I’m trying to manage the diabetes, not the diabetes manage me.  I have the knowledge now of what I must do and it’s not a, if you would like to or you can put it off and this is something that you can do later.  This I must do if I want to stay well, and I understand that now.  I have that knowledge.  I probably always had the motivation, but I just needed something to kick start me to get me going.”

“For hardheaded folks like me, how do you make them understand the seriousness of where they’re headed before they get there.   If I had understood that borderline diabetes meant I had it, I would have done something way back then.  If you hear diabetes, you need to put your antenna up and ask what you need to do.   Start asking questions. Do I have it and what do I need to do?  Don’t assume that, well, I’m getting close but I’ve got time, because more than likely, if they use those terms, you’ve got it now, and it’s better and easier to manage if you start out early.”

Learn more about different types of diabetes, click here.

Learn About Pre-Diabetes from the American Diabetes Association.

For more information creating your diabetes “blueprint”

and becoming better at managing your diabetes like Roosevelt, click here.

Pat's Story

I was pre-diabetic for about a year now. We’ve been watching it. I knew that meant I had to start paying attention and cutting the sugar. That’s when we started coming to some of the cooking classes taught by Pam Beamer at Tops Cooking School.

I love to bake. I love to cook. That part has been an adjustment, not baking like I used to bake. I always had cake in the house for the kids.

And finally in December, the doctor said, okay, you’re diabetic.  That’s when I started medication.  When he said you have diabetes, I knew it was serious.  I knew it was an illness and it’s something you’ll probably have the rest of your life, but I didn’t get terribly upset because I didn’t feel any different.  I figured, well, I really have it now, I’m going to be on medication, I’m going to have to make some changes, but I’ve dieted on and off all my life and I wasn’t going to change anything very drastically.  I don’t like the word diet.  I will not go on a diet anymore-done.  I’m doing a lot more exercising than I’ve done in the past.   My doctor told me to watch my carbohydrates and do things in moderation.   So this is why the classes have been kind of a nice thing, because I’ve made a, a few changes here and there from things we’ve learned through the classes. 

I started coming with a girlfriend and, um, the two of us, uh, are both overweight.  She’s diabetic, so am I.  We’ve just made gradual changes.  We’ve learned a lot of little hints from Pam like the whole wheat flour.  I don’t buy the white flour anymore.  I don’t buy regular salt, I buy the kosher salt.  There are a lot of little things.  We got a lot of great recipes.  We discuss some of our problems.  Pam has been extremely helpful in looking things up in her little food book.  Pam is a specialist, a Registered Dietician and Certified Diabetes Educator.  She can answer any question you’ve got. It’s a lot of fun. Plus it’s nice to sample the food.  There are some things I’ve never had in my life that I tried that are very good. 

I’d like to instill some of these things in my grandchildren.  I know I’ve made a lot of her recipes, like the cranberry muffins.  I love cranberries and I’ve got my grandchildren eating them now.  My grandchildren are used to having cake or cupcakes around the house.  This is a change now, because I don’t buy the cookies and I don’t have ice cream in the house like I used to.  It’s gradual changes, things we can do without.”

Learn more about different types of diabetes, click here.

For more information creating your diabetes “blueprint”

and becoming better at managing your diabetes like Pat, click here.

Learn about eating healthy with diabtetes like Pat did. Explore topics on Food & Fitness from the American Diabetes Association--including Recipes, What Can I Eat, Planning Meals, MyFoodAdvisor, Getting Motivated, Ideas for Exercise, Fitness Management, and Weight Loss.

Learn more about the Your Health Classes at the Cooking School presented by Tops. These classes are taught by a Registered Dietician and are often covered in part by local health insurance.

Click here to learn more about Tops Cooking School, or call 716-515-2000.

Explore other health and wellness programs, resources, information and tools

offered through your insurance provider—

BlueCross BlueShield of Western New York

Independent Health

Univera Healthcare

Audrey's Story

“I’ve been diagnosed as a type-2 diabetic for about 20 years. There’s a history in the family on both sides.  My father was a diabetic, his mother and three of his brothers.  On my mother’s side, her brother and sister were also diabetics.  I knew that I was very prone to diabetes.  When I was in my 20’s, they did some tests and they told me that my chances of escaping diabetes were practically zilch.  I think you realize that there is a chance, but you’re always thinking, well, maybe not.”

“I can tell you the day that I was diagnosed.  It was after Thanksgiving.  I was shopping with my cousin, and I had an unquenchable thirst.  And nothing I drank helped, and I thought, I’m in trouble here. I went to the doctor the next day, and he confirmed I was diabetic.  They did some blood work and , put me on medication.”

“It’s ironic because I am an RN, and I knew what to expect, and yet I was in denial, scared me to bits initially.  I knew my chances of escaping it were practically nil, but on the other hand, over the course of time, I wasn’t doing what I should have been doing to maybe stop it or prevent the diabetes from happening as quickly as it did and as, as rapidly and severely as it was.” 

“My one uncle was blind as a result of the diabetes for many years because he didn’t take care of himself.  My other uncle was, had a partial leg amputation.  And my aunt had kidney disease and was on dialysis. And both my father and my aunt had laser surgery for, to stop retinal bleeding.  So, initially I was very good about taking care of myself.”

“Sometimes you sit there and you think, okay, eh, a little pie, a little cake.  And I got away with it, my blood sugars were still good.  Unfortunately, I’m also a stress-foodaholic.  You know, give me lots of stress and I’m hitting the refrigerator.  And I found that was what I was doing a lot, and I would yo-yo diet. Then it caught up with me, and my hemoglobin A1C was high.” 

“When diabetics see their primary physician, many of them recommend you see an endocrinologist, who specializes in diabetes.  I saw an a endocrinologist when  my blood sugars became high.  I also saw a nutritionist, and went over the diets and the carbohydrates and what you need to do to maintain a normal blood sugar level and to control your diabetes.”

“I thought, I don’t want to be blind, I don’t want to have an amputation, I don’t want to have kidney disease.  The only way that I was going to prevent this was to stay with the diet, do everything that the doctor told me, and modify my lifestyle.

All my adult life I’ve taken care of people, and I wasn’t taking care of myself.  And I thought, I’m important enough, and if I don’t take care of me, who is going to take care of me?”

“So I decided that, once and for all, this was going to be done.  I went to Weight Watchers.  I’ve been going for a year now.  I’ve lost a hundred pounds.  It has helped with all my blood pictures:  the hemoglobin A1C, all my triglycerides, my cholesterol, everything is well within normal ranges.  So, it was a matter of taking care of Audrey.” 

“I’m able to eat what I’d like to eat if I just watch the portion control.  It’s probably one of the healthiest diets for you.  It took me awhile, but I do follow the advice of my doctor.  I do not ever go barefoot.  I have some neuropathy from, resulting from the times that I didn’t really take care of myself as well as I should have.  I check my feet every day.  I put lotion on.  I make sure that I eat at regular times.  I make sure that I take my pills.  I see my ophthalmologist on an annual basis, I try and do my blood work as the doctor recommends.  I don’t ever skip appointments.  I test my blood sugar four times a day, before every meal and before I go to bed and record it and send it to the doctor on a monthly basis.  Mine has to be monitored closely only because of the fact that I’m orthopedically now challenged and cannot exercise as much.  So you really have to be careful with the food intake.”

“The whole idea of controlling your disease is that you have to take care of yourself.  You have to follow your doctor’s advice.  Sometimes it’s hard, and it’s not an easy road all the time, but if you do it you can have a long and healthful life.”

“This is a disease.  It’s not going to go away.  But with good management, good physicians, good control, you can lead a very successful life, and you can have a healthy life.  There are many things that can happen if you don’t and they’re not pretty, but if you really take good care of yourself you should be fine.”

For more information creating your diabetes “blueprint”

and becoming better at managing your diabetes like Audrey, click here.

Learn more about possible complications

that can result from poorly controlled diabetes like Audrey did, click here.

Learn more about guidelines for diabetes care, click here.

Heather's Story

“My Mom felt fine. She looked fine. And six weeks from the day she was diagnosed, she died of colon cancer. Just because you look fine, just because you feel fine doesn’t mean that you are fine.”

“She said that her back was bothering her. Other than that, she felt fine. She was an avid gardener; she loved her flowers. They had just moved into their new home, so she was getting everything ready, hauling dirt, and pushing the wheelbarrow. So we chalked it up to a pulled muscle. She looked healthy.”

“A few weeks later, I get a phone call saying that she’s going to go through testing; they think it’s something serious; it’s not just a muscle. Before you know it, she’s at the hospital having, surgery to remove a section of her colon. Come to find out the back pain that she was having was the cancer.”

“The whole plan was for her to recovery from surgery, start chemo and radiation. I was back home with my mom for about two weeks, seeing her through the surgery and a little bit of recovery. My sister and I talked, and she said, you go back to work in Buffalo. We’ll take care of her. When she starts her treatment, you’ll come back home.”

“I came back home to Buffalo on a Monday, and that Thursday I got a phone call from my brother-in-law. And he said you need to come back.”

“The doctors think that she probably had cancer for at least eight to 10 years. My mom was 58 when she died and you hear you’re supposed to get that screening at 50. She went for all of her check-ups. She did everything else like she was supposed to. That was the one thing she didn’t do. The screening would have seen what we didn’t from the outside. They could have caught this before it was cancer or in an early stage of cancer; to think that all of this could have been prevented over something so simple.”

“She didn’t get the colonoscopy; whether she pushed it off or she didn’t think it was important or her doctor didn’t push back you look at the outcome, what’s a couple of hours of your time and maybe a little embarrassment or a little discomfort. I think if she knew the alternative, she would have done it. We would have pushed her to do it. None of us knew how important it was. There really is no excuse, but hindsight is always 20/20. My mom did everything for everyone else and this is the one thing that she should have done for herself.”

“People see me on TV every day. The things that I report on--for so many years, it was always other people. And suddenly it’s me, and it’s my family. When it happens to you, you realize how many people are touched by cancer. I want to do what I can to put a face with this disease and bring attention to screenings. I’ve done several stories for WGRZ on colorectal cancer. I remind people to get colonoscopies, to listen to your doctor, to go to your doctor, to listen to your body, all of those things. Anything that I can do, whether it’s a news story or a blog or a Facebook status, anything to get people to pay attention is a great thing. It’s sort of a reminder of what you can do to help yourself and what my mom should have done and how we could voided all of this.”

“My mom always put us first she wouldn’t have it any other way. So, when you think about her being diagnosed and what could have saved her, you wish that she would have put herself first.”

To learn more about Risk Factors for Colorectal Cancer, click here.

More about Screening Tests, click here.

John's Story

“He reassured me, ‘It’s probably something, something we can take care of when we do the colonoscopy, a small polyp that might be bleeding a little bit or something like that, probably nothing to worry about.’ I was awake for the procedure, and immediately, when he started doing the colonoscopy, there it was on the screen. I saw it and I said, stop, because there it is, there’s my problem. And he says, ‘You’re absolutely right, there’s your problem. That’s what we did not want to find. It looks like a tumor. I definitely cannot remove it with this procedure.’ They proceeded up through and found a few polyps, too. The polyps they removed in my colon were negative, but the biopsy of the tumor was positive. It was cancerous.”

“When he said that I had stage III colorectal cancer, you know, I thought it was the end of the road for me. But then you reevaluate yourself. You think the worst-case scenario, and then you say, well, I can beat this.”

“It was tough; six weeks of chemotherapy, in conjunction with six weeks of radiation. Then, I needed surgery to remove the tumor and reconstruct the lower colon section. Then I went back on chemotherapy for 24 weeks. Today I am just over seven years post-surgical and cancer-free”

“Early detection is key to surviving. I’m a guy, and I didn’t think anything could happen to me. But, you know, having blood in the wrong places, especially when you go to the bathroom, it’s a huge flag. You know, it’s a huge warning sign. The symptoms I had, many people would have overlooked at any age, thinking it was something else. And if I would have overlooked it, like Dr. Butler told me, I probably had nine months to live.”

“I have a lot of close friends that ran to their doctors when I was diagnosed. A family member 55 years old, looking to retire at 56, he hadn’t had a colonoscopy done. His wife kept saying, ‘You should go get it done.’ ‘No, I feel fine, I feel fine.’ ‘Okay, well, guess what? John was just diagnosed, you’d better go in.’ Well, he went in and he had cancerous lesions throughout his whole colon. They did some, some surgery to remove the lesions but couldn’t get it all out. He passed away a little bit over 10 months after he was diagnosed. If he would have went in when he was 50, there’s a possibility, and a strong possibility that he could still be here on this Earth with us.”

“Schedule a colonoscopy. You’re never too young to get it done, especially if you have any type of family history. If you have no family history, then the rule of thumb by the medical field is at age 50. Don’t put it off, because if you do, it could be too late.”

“I was diagnosed at 35, so 10 years prior to my age of diagnosis, my children have to get checked. So my firstborn son has to be checked at age 25. Now that’s going to be scary for him, and we’ve talked about it. The way I look at it is, if I wasn’t proactive, I would have missed out on their life.”

“Prevention and paying attention are key.   If I could address everyone who is 49, turning 50 I would say pay attention to what your body tells you, don’t ignore any early warning signs, educate yourself about colorectal cancer and get screened.  What are you waiting for?”

To learn more about Risk Factors for Colorectal Cancer, click here.

More about Screening Tests, click here.

Learn more about Treatment and Reducing Risks, click here.

Betty's Story

A job layoff in 2007 left Betty without health insurance.  She was doing her best to stay up with her health care taking advantage of services offered by a local clinic.  That’s where she came across a pamphlet for the Cancer Services, a no cost cancer screening program.  She contacted them and set up an appointment for an overdue mammography and pap test, but screening for colon cancer was the furthest thing from her mind. 

Patricia Beecher from the Cancer Service Program of Erie County explains, “Betty is exactly the type of person that we like to enroll in our program because she could have very easily have fallen through the cracks. She didn’t think there were any services out there for her. She had never heard of us until she saw our pamphlet, and once she came to us, we were able to provide her with all the necessary, screening tests, breast, cervical, and colorectal.”

Beecher urged Betty to make the appointment, “I wanted her to understand how important it was for us to go through a colonoscopy and investigate the reason for the positive test, “I told her, her test had come back positive and it could be something as simple as hemorrhoids or diverticulitis, but it could be an early sign of colon cancer. And that the next step for her would be a colonoscopy and we were going to be referring her to a specialist, and that our program would pay for it.”

The doctors found several large polyps, including one that was too large to be removed during the colonoscopy and required surgery.   “I was so scared.  They doctor’s kept asking me if I had any questions, but I didn’t know what questions to ask. Doctors usually scare me, But Dr. Bullard Dunn was gentle and she talked to me and she let me know that it was nothing to be alarmed about, but she did want to do the surgery.”

And Beecher was able to calm Betty’s fears about cost of the surgery, “Here you have an uninsured woman, and, you know, wondering how she’s going to pay for all this. And I was able to tell her about the Medicaid Cancer Treatment Program that is part of our program. For eligible people who come through our program it will pay for the cost of their treatment.”

“After the surgery, Dr. Dunn’s associate, he came in and he talked to me, and he said, we just got the results back. He said, I’ve got good news and bad news.” The bad news was the doctors had to remove part of Betty’s colon, the good news, was it was not cancerous.  “I have something to live for, you know, so I’m glad I did have the test done, and everything was fine.”

“I thought it happened to everybody else but me, or somebody I know, and now I know it can happen to you.” Knowing what Betty was going through motivated he mother, brother and many friends to get screened.  “It’s better to know.  It doesn’t have to be cancer.  You should always go to your doctor and have the tests done.”

More about Screening Tests, click here.

New York State’s Cancer Services helped Betty get the screening and follow-up care that she needed. The program provides colorectal cancer screening services to low-income men and women aged 50–64 years who are underinsured or uninsured for screening, when no other insurance is available. Find out more about New York State's Cancer Services Program here or by calling 1-866-442-2262.

To learn more about Medicare coverage call 1-800-MEDICARE (1-800-633-4227) or visit www.medicare.gov .

Walter's Story

Walter is a former paramedic and knows the importance of talking with his doctor –even when it comes to little changes in his body. “Stuff can be missed if you don’t talk to your doctor.

“They did the colonoscopy. My doctor came in and said, you have cancer, and you can go to Rochester or you can go to Buffalo.” At that time Walter remembers thinking, “I just had a bombshell dropped in my lap what do I do?”  

“I was 42 years old when they found my cancer. I didn’t know anything about colorectal cancer, absolutely nothing. So when our, our initial result of our colonoscopy came back that we had cancer, of course, we were blindsided. From there, the earnest was on myself and my family to both learn about the type of cancer that I had and to make our plans as to how we were going to treat this.”

“I had a friend that was a doctor. I said, ‘Colin, I’ve been diagnosed with rectal cancer. I’ve got a very young family. I’ve got kids that I want to be with. I want to make sure that this gets taken care of taken care of correctly.’ And he pointed me to the Buffalo General, and he sent me to Dr. Kulaylat for surgery, and things happened very quickly.”

“We discussed the surgery and everything. Dr. Kulaylat told me I would have a colostomy. It was frightening. I wanted to know if I would have it the rest of my life. And he couldn’t make any promises. He told me that there was a good chance that he would be able to reverse everything and take care of it afterwards. “I wanted to make sure that I could be around for my kids. I didn’t want to give it a chance to sit there and continue growing inside me. “

His treatment included surgery, radiation and chemotherapy. “Come December, I will be three years cancer-free, but it wasn’t easy. It’s tough; it takes its toll, but sometimes what puts you through adversity makes you stronger. I’ve got a great family, the best support system in the world that anybody can ever have”

“My kids know that they will have to have screenings a lot earlier because of this. I called all three of my brothers, and I said, guys, I’ve got cancer, so you guys are going to need to get a colonoscopy. Now of the three boys, only one of them had a polyp that they removed, but all of them went.”

“I share my story from beginning to end and everything in between. My biggest hope is that, if you’re having an issue, you talk to your doctor. I tell people. You don’t know, you’re not superman, you can’t see inside your body. Had I not talked to the doctor, it could have been too late. So, don’t be embarrassed to talk to your doctor and tell him, you know, this isn’t right. Get it checked”

“I knew something was wrong, but I didn’t know what. And the only way to find it is to go in and have the colonoscopy. I’d be great if I could sit there and look at you and tell you, you know what, you’ve got a cancerous tumor growing, but I can’t. That colonoscopy could be what saves your life.”

To learn more about Risk Factors for Colorectal Cancer, click here.

More about Screening Tests, click here.

Learn more about Treatment and Reducing Risks, click here.