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Living with Type 1 - Be in Charge and Own it

Living with Type 1 - Be in Charge and Own it


June 19, 2008  

Kelly Kunik is an active 30-something woman living well with type 1 diabetes. Kelly’s father, two of her sisters, her nephew, two of her aunts and one cousin are also type 1 so it’s kind of a family affair. She works in marketing and development and  teaches a theater arts program. Kelly is also an active diabetes speaker and routinely presents to groups of teens and kids with type 1. Diabetes1 recently caught up with Kelly to talk about life, family, fun, and her blog: diabetesaliciousness.blogspot.com.
 

Diabetes1: How did you find out you had diabetes?
 
Kelly Kunik: My parents actually suspected it. I came from a family of diabetics. I started losing a lot of weight and was always thirsty - I was only 8 years old. They thought I was growing fast. I was getting very tall. I was very tired and had all the classic symptoms. Finally, my mother wanted my sister to help me get a urine test. I remember I had very strong inclination that if I let my sister take the urine test, I’d be a diabetic. So I fought against it big time. But, I felt horrible. When I finally let my sister test my urine, it was high, and so we drove to the Children’s Hospital in Philadelphia.
 
Diabetes1: What was your reaction when you were diagnosed?
 
Kelly Kunik: I was trying to convince my parents to wait until the next day as it was Halloween. I had a great costume. I kept saying to anyone who would listen: “the tests are not sure” and promised to come back tomorrow. A nurse looked at me and said: “Honey, you have diabetes, there is no coming back tomorrow, and you have to stay here at the hospital.” I wasn’t crying since I knew my parents were upset. Very upset, because of my diagnoses and me. Seeing me cry would make them more upset.
 
Diabetes1: How did you/your parents find good information about treatment after your diagnosis?
 
Kelly Kunik: I don’t really remember. We were given a pile of recommended reading materials from Children’s Hospital and we went to see my endocrinologist every three months like clock work. We had a poster by the table with all ADA exchanges and measurements of food. My mother would put food out for me based on those measurements. My father was a diabetic and so was my sister that was living with us at the time. My other sister was married and she was also diabetic. I do not know what kind of books they had back then – it was 1979. I do not think the information was like it is today. Parents can go online and find information or to communicate with each other. Back then, parents did what the doctor told them and they were mostly on their own.
 
Diabetes1: How did it feel to be a part of a diabetic family?
 
Kelly Kunik: Nobody in my family was type 2. Everybody was type1. I remember when it was time to eat people would just take out their needles. There was always diet soda in the house. It was what it was. It would be the same as living in the family where some people would be allergic to eggs. Some people could eat them and some people could not. I remember wanting to be normal and healthy. I did not want to be different. I just wanted to be like any other 8 year old. 
 
Diabetes1: Tell us about your blog.
 
Kelly Kunik: I heard about blogging and read a few but none of them were diabetes related. Then something happened in the media – An actress who had originally been diagnosed as a type 1, made a statement that she had “weaned herself off insulin through diet and exercise and now considered herself a type 2.” This statement upset a lot of type1’s and their families, including me. Yes, misdiagnoses happen, and I really do think that was the case with that particular person. BUT, type 1’s can’t wean themselves off insulin through diet and exercise. That’s asking for trouble on every level. I know pro athletes with type 1 who play sports for their paycheck, and they still take insulin, DAILY.
 
There are so many type 1 girls wanting to be slim and scared to gain weight from taking insulin. Lots of those girls have diabulimia. Diabulimia is an eating disorder where type 1 diabetics take much less insulin that prescribed. They lose weight, but cause irreversible organ damage in the process. Some go into DKA and die. Diabulimia is rampant among teenage diabetic girls AND women, and that type of talk just reinforces unhealthy behavior. I got upset and I started to write. I had no idea about blogging or the blogging community.
 
I started to write about the things that happened to me and what it felt like to be diabetic in this world. For the first few months nobody read it.
 
I read other blogs until I understood what this whole blogging world was about. People started leaving comments and I did the same on other folks’ blogs. That’s how it started, slow, but it’s growing, and so am I.
 
I was silly enough to say: “Hey, my name is Kelly. I have a blog too. Come on over.” I’m in my upper thirties. I’m somewhat computer savvy, I use email, and I do research online, all that good stuff, but had no idea what blogging was about. I started meeting all these great people and learning from their blogs. There are really great people out there! I’ve had diabetes for 30 years and I can recognize my frustrations in someone else’s frustrations. What I find funny, others will as well – hopefully. It makes me happy when people write to me and say: “I feel the same way.” Hey, anything I can do to make someone laugh and learn about diabetes – it’s become my passion!
 
Diabetes1: What do you do for living? How do you manage a busy work schedule and diabetes?
 
Kelly Kunik: I work in marketing and development and am starting a new job with an ortho company in two weeks. I’ve been very lucky with the jobs I’ve had. Diabetes was not really a factor, it is what it is, and I do my job. I can eat Lara bars in the middle of a meeting if needed – it’s a pretty relaxed environment. I also teach a Theater Arts Program in conjunction with the Philadelphia Free Public Library and the non-profit group Random Acts of Theater. However, when I do my stand-up for different diabetes organizations and groups, diabetes does come into focus because it is what I talk about. If I am talking to a group of teens who are all on insulin pumps and my sugar goes low they get “it.” I say: “OK, I need to take a pause so I can do something about my sugar.”
I joke about all the annoying, redundant, diabetes day-to-day happenings and hope they can relate. Every diabetic has had someone tell us that if we would just exercise more and eat less carbs, we could cure ourselves of the Big D. Diabetics get it – that’s the beauty of the community.
 
Diabetes1: Do you use a pump?
 
Kelly Kunik: Yes I do and I love it and have been on it for just over four years.
I highly recommend it. I never thought I needed a pump but my doctor kept saying to me: “I really think you need to be on a pump.” He finally said “try it for a year – if you don’t like it, you don’t have to wear it.”
So I made a deal with him. I went to my diabetes educator and I learned about it and took classes. I went on it and and now, I’ll never go back. Currently, I use MiniMed and it is four years old. It’s time for an upgrade, so I’m doing my research and deciding on my next pump.
 
Diabetes1: What are your hopes for future treatments?
 
Kelly Kunik: When I was first diagnosed in 1978, I was 10 years from the “cure.” Obviously, since it was 30 years ago, that was not the case. I don’t know what future holds but I know it will be good. I’m positive there will be a good future for diabetes and diabetics. I’m cynical, but positive.
For me, I just want my future to be good. And it will be, for all of us as diabetics. We must educate ourselves, continually. We have to fight for a cure, we have to raise money to fund research for the cure and that’s great. But until it actually happens it’s up to us to take care of our diabetes– we must own our disease. So if you want to have a successful life you have to be in charge and own it. And it might be your boyfriend or a spouse helping you, but in the end you are the one who has to live with the disease.
 
When a cure is discovered, I will be the first one to run out to Ben & Jerry’s to celebrate with every diabetic I know.  
 
Diabetes1: You were in the movie “Summer of the Serpent.” How hard was it managing your blood glucose level and being filmed at the same time?
 
Kelly Kunik: It was work. But, it was more work managing my blood glucose when I did theater because of the adrenaline rush during any live performance. When I acted on film, it was much easier because there’s a lot of down time between shooting. So for me, my blood sugar was not a problem. I just needed to watch what I ate since they had pasta or pizza for lunch and of course I couldn't eat that. Plus, I was in a bathing suit, so no pasta! I had some yogurt and healthy food instead. It was a great experience and a beautiful movie. It won at the Brooklyn International Film Festival. I am really lucky that I was able to be a part of that film.
 
Diabetes1: Is there anything diabetes still holds you back from?
 
Kelly Kunik: I think I held myself back from doing certain things because I was afraid of what would happen with my diabetes. My diabetes never held me back though.  
 
I held myself back because I was afraid. I think that diabetes or not, if you are afraid, it keeps you from pursuing what you really want or what you are really interested in. I was always taught to go the safe route. That is coming from parents who not only grew up during the Depression but also lost their daughter to diabetes. They didn’t want the same thing to happen to me. I think my attitude about diabetes has changed a lot. I always said it was nothing. Now, I actually believe that diabetes is a part of who I am. I go for it, diabetes or not!
 
Diabetes1: Do you have any advice for other people living with diabetes?
 
Kelly Kunik: You have to OWN your diabetes. You can get mad at it sometimes but you can’t ignore it, it’s not going anywhere. You’re the one who has to deal with it – all of it – the highs and lows, the occasional crankiness, the doctor’s appointments, everything.
 
It is what it is, so own it instead of it owning you, make the choice and own your diabetes. Learn all you can, talk to as many people as you can. Read, learn, and stay informed.
 
And go to a diabetes educator – I think it’s very important to have a diabetes educator. Diabetes is different every day: some days you feel and your numbers are good, and some days your blood sugar is high for no apparent reason. You have to treat for the situation. It feels like the end of the world when you are first diagnosed but after doing your homework and reading about diabetes you realize that other people are going through much worse, something that is more catastrophic. So it’s not the worst-case scenario. I know worst-case scenario – I lost my sister from diabetes – I watched her die. It was heartbreaking.
 
You have to be an educated diabetic. Plus, all the technology today makes it so much easier than it was 30 years ago: test your blood sugar – only takes only 5 seconds a day. If you test your blood sugar 10 times per day it will be still less than a minute – it will take you 50 seconds to do that. And you would feel great. You’ve got to do the work. I test my blood sugar 12, 13, 14 times a day because I like to feel good. Nobody likes it when his or her blood sugar is high – it’s like walking through jello.
 
Diabetes1: Do you participate in any diabetes-related events?
 
Kelly Kunik: I’m speaking to a group of teenagers who are on the pump at VirtuaHospital. I am very excited about that!
 
I’m in talks with two national diabetes organizations to speak at events in August and September. I’m really so passionate about diabetes and living a kickass life with it! I love helping people, on a selfish note; I get a lot out of it emotionally.
 
A few weeks ago I received a letter from a mom who has a daughter with type 1. She told me that she and her daughter read my blog together. It’s tough for the both of them. Being 13 is tough enough, but throw diabetes into the mix, CRAZY TOUGH. Being the parent of a teen diabetic – INSANE TOUGH. The fact that they read it together – ROCKS!
 

To hear more from Kelly, visit her at .www.diabetesaliciousness.blogspot.com

 

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