Reporter seeking your advice for the newly diagnosed for a series of news articles

I’m a freelance medical reporter who writes for magazines, newspapers and various websites about many issues including diabetes and our health care system. At the moment I’m currently writing a series of articles on the lifestyle issues surrounding diabetes - how to manage nutrition and how to adjust to the diagnosis. I’m looking to interview some folks who’ve had diabetes for a while and can offer some advice on these subjects to those who’ve just been diagnosed. Have you developed a cracker jack system for counting carbs or tracking portion sizes? Or do you have some funny stories to tell about adjusting to your diagnosis or lessons to pass along about incorporating your disease into your life? I’d love to hear about them and so would my readers, who could use your advice. This is for a major consumer health website. If you’re willing to be interviewed for the story, please let me know. You can post here or email me directly at KarenRafinski@gmail.com. Thanks so much for your help.

No prizes in the cracker jack and no funny stories. Diabetes is like the battle of the Somme a grim struggle for life…

Karen, I’m sure you’ll get the full range of attitude and approaches to diabetes here. There are those who say, “do what I do, and you won’t have any problems,” and then there’s “don’t do what I did - see all my problems”. We have those who attend to their diabetes and still are ravaged by complications, and those like me, who gave it moderate attention for 40 years, and have few complications. It’s a very unfair disease. I think of it as a monster, who likes to pull the rug out from under you when you least expect it, and then hold you down on the floor with his big foot on your chest while punching you in the face without mercy. Right now I’m feeling exactly like Anthony here, yes, the Somme. The facts for me are, it doesn’t get any easier to manage, it only gets harder. Sorry to be such a downer. If you’re looking for funny stories, it shouldn’t be hard to find them on the forums and blogs. We do love to laugh here!

TuDiabetes has helped me more than anything. We are like a family here, except we all “get it”. I’ve been here for over a year, and I’ve learned a lot, been inspired a lot, cried, ranted and raved, celebrated, and mourned. It’s not just adjusting to your diagnosis, it’s a constant adjustment for the rest of your life. My friends and fellow members here make that reality a little easier to take.

i’ve got plenty of funny stories about dealing with diabetes!! :slight_smile: i also feel that i have “won” a lot with dealing with this disease…it’s taught me responsibility, has given me a better knowledge of how to take care of my body and i met one of my best friends of over 15 years that also has type one diabetes. i’m not struggling for life what so ever. i’m full of life!! it’s not all gloom and doom. :slight_smile:

Hi all,
Thanks for your responses. I hope you don’t think I’m taking the diagnosis too lightly by mentioning “funny stories” - it was late when I wrote that post and I probably could have worded it better. What I’m really looking for is advice from people who’ve lived with the disease and so have firsthand knowledge of how best to manage it - that can be anything from tips for managing diet to strategies for coping with the tough aspects or just anecdotes about what worked for you. My thinking is that because you live with the disease every day you can provide the most useful advice to folks who are just starting to deal with the disease. I’d really appreciate any help you can offer.
Thanks!

Hello Karen, My advice would be to look out for some of the members who have had diabetes for a while and who are managing it well. Unfortunately I am not in a position to help because my A1c is quite high at the moment. Perhaps in June when I am hoping to find a much lower A1c. There are members here who have a vast knowledge of this condition first hand and they are wonderful at explaining everything, I wish I could mention some names but I can’t, I will however ask them to contact you if they wish. Good luck. It’s tricky.

Please do - and thanks so much for your help. Karen

Having been a Type I for 54 years since age 4 I’d love to be interviewed. I have many stories, some funny some not. Back then in the late 1950’s and 60’s not much was known. I can still remember parents not letting there kids play with me out of fear that they would catch it. Seems funny now but sure wasn’t then. I’ll email you my contact info.

Andy

I would love to hear more about this. If you’re up for it, would you contact me directly at KarenRafinski@gmail.com so I could do an interview. I’d very much appreciate your help.

I don’t think you’re being a downer - I think I’d like to hear your perspective and more about your experience. If you are up for it, I’d love to chat some more. Thanks for your help.

Wow! That’s pretty amazing. I’d love to interview you and thanks for your help.

I have just one silly question… how does one “adjust their diagnosis”? That struck me as odd. I think we would all agree that if we could “adjust” our diagnosis it would be to adjust it to the diagnosis of a cold or some other small inconveinence. There, I feel better now.
Anyway, the most important part of being a T1 is probably acceptance. Once you can accept the fact that this disease will make you pay attention to it 24/7/365 and that it is not going away, you can make it part of your life and do whatever it is that you want to do in this life… nothing is impossible. I think diabetes has made me more stubborn than I might have already been. I refuse to let diabetes control my life. I control it, it does not control me. Do I do it perfectly? Absolutely not… I don’t think there is a perfect way…
The secrets that you are looking for are within each one of us individually, and they are as different as each of our treatments. No two treatments are the same and there is no standard, there are no tricks that apply to each and everyone of us. The goal is to keep our BG as close to normal as possible, how we all get there… everyone has their own way.

I’ve had diabetes about 14 and a half years now, Type 1, and would be willing to be interviewed. I’m not going to give you many funny stories or general tips however- I don’t want Type 1 perceived as some light-hearted thing that has a top ten list of things you do that solves 100% of the problems associated with the disease. Too many people already think we just need to inject insulin a couple of times a day and then we’re just like everyone else.

If you are willing to cover the severe emotional burden, the chaos, and the constant need to find an equilibrium that may last for a month or for a day then I think we can do business. Type 1 is an intensely personal disease with many isolating factors and this is largely unknown to the rest of the non-diabetic population. We are the walking wounded, inside and out. This may not be what you are looking for and I understand that completely.

As for me personally, I have a decent A1c (mid 6s), devote the bulk of my attention every day to managing my condition, try to stay on the cutting edge of the available technology and medications, and I can tell you what works for me as far as how and what to eat. I can also get into exercise routines and specific types of workouts that can help Type 1s.

There is another Type 1 on this board who’s motto is “Where there is no hope there must be determination”. This more or less reflects my philosophy too and so a grim determination is the outlook you will get from me on this topic. I’m happy to give you that if that is what your editor will publish.

Yes, I’m absolutely willing to listen to all sides and perspectives on this. And it’s totally not my idea to paint it as a light-hearted thing but rather to give people some real-life perspective from those who live with the disease. So I’d love to interview you - just shoot me an email with your contact info. And thanks so much for your help.
Karen

Very well put Jason.

I would worry, America likes to transform the Korean war into MASH and the sinking of the Titanic into boy meets girl. Well my mother’s notary ( contract lawyer in Quebec) was machine gunned at night by Chinese Commie commandos, he was a complete kook even after surviving this physically and I do not see what is romantic about going for a swim in the North Atlantic. I tried at the beach at Shediac and nearly died of hypothermia. you got to be a Russky weight lifter…

As for the tevhnical aspects. We the diabetics do not agree on the causes of the disease, we do not agree on the low carb vs high carb diets. I guess the article could say that exercise is wonderful for all diabetics regardless of their label. I am not sure we agree whether weight lifting or aerobic exercise is better.

The only funny thing I can think of was my first exposure to a diabetic dietician. She was talking muffins and I was talking sauerkraut. She said my brain needed a lot of carbohydrates to survive. I said I did not eat muffins before getting diabetes and certainly did not intend to now.

The other one was with my primary care provider. He was telling me how wonderful hormone replacement therapy was for the female. Great innovation, good science, great medecine. So I ask him for some HRT for myself I said if I could grow muscles it would make the management of diabetes esier. He said that HRT was toxic for the male, bad medecine.

I said what was good for the goose should be good for the gander.

I was diagnosed with Type I Diabetes in 1980 (I was 9 years old). I grew up being told that I would be dead by the age of 20 due to having Diabetes and also grew up during the time Steel Magnolias put the fear into a lot of us T1 women to not have babies. Things have changed since I was diagnosed (and more freedoms which I very much enjoy). Back when I was diagnosed the elementary school I went to in Iowa had not previously had a Type I Diabetic, therefore; I was no longer allowed to participate in running in gym class and the school nurse had no clue about Diabetes and would panic when I had a low blood sugar level (I thought she was going to have a heart attack and need to go to the hospital). My niece was diagnosed last July (2008) and growing up with Diabetes will be totally different for her - it will be closer to a normal life. I’m 38 years old now (I’ve passed the 20 year age mark! LOL!) and I gave birth to 3 children (which I thought would and could not ever happen). When I see fellow Type I Diabetic women post who wonder if they can have the same freedoms as a non-diabetic woman, I just want them to know that YES! it is possible! I saw a high-risk ob with all of my pregnancies (also had C-Sections with each) and kept my A1c between 5% to 5.9% during my pregnancies. Another funny thing is that back in 1980, I was always told that I would get gang green and have my feet and legs chopped off as a side effect of Type I Diabetes (I still have my feet and legs - knock on wood!).

If someone is diagnosed with Type I Diabetes and has a doctor who is for insulin pumps… I would say go for it! GET ONE!!! I took shots for 24 years (and there were times I would skip taking shots because I simply hated it and broke quite a bit of insulin bottles in public restaurant restrooms that has tiled floors). Another reason for the insulin pump? Having a waiter not think you are some form of drug addict (yep, I took a shot at a restaurant while sitting in a booth and then the waiter gave us poor service). I (along with other insulin pump users) joke that the only way an insulin pump could be taken away from me is to pry it from my dead cold hands! The other reason for an insulin pump (especially for women) is horrible HORRIBLE morning sickness during a pregnancy (yep, been there done that - sick the whole 9 months and having major food aversions so that after taking a shot thinking I would eat my husband would have to keep getting me Tang and crackers).

Good Luck with your article!

No funny stories , however I can tell you : determination , determination , determination and took the diagnosis very seroius ( do I sound like a war baby : YES …no spring chicken !! ) …living with type 1 diabetes since 1983 …no side affects as we know : kidney , eyes, amputation ; yes osteoporosis due to type 1 , thyroid associated with diabetes and radiation , breast cancer in 1984 and…to top it off …1 ) an awesome hubby and 2 ) have done marathons and 1/2’s . And live in Canada since 1963 .

First piece of advice is - it’s not your fault.

My outlook is more like Amanda’s than Anthony’s. It’s not the Battle of the Somme, it’s a turn in the road for me, possibly because I was diagnosed late, at age 47. Even though I’d rather not have it, diabetes has presented opportunities to improve my health that I might never have taken: I eat better, I don’t smoke anymore, I exercise regularly, I have more energy, I look great, I’m focused and I pay attention. Like nel, I’ve now done marathons and 1/2 marathons. I would only have dreamed about it before I was forced to get healthy.

Terry

nicely said