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.

(link to ‘your role in getting quality care' web marker)

For information on partnering with your doctor, click here.

(link to new show 3 ‘Partnering with Your Doctor' web link)

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