Looking for a community of fellow diabetics

Posted by dorisena @dorisena, Mar 4, 2019

I want to talk with real diabetics because my doctor doesn't say much and leaves me to do my own thing.

Interested in more discussions like this? Go to the Diabetes & Endocrine System Support Group.

@dorisena Welcome to Connect. My name is Carol and I have Diabetes 2. I will be glad to try to help you through my experience if I can so you won't have to go it alone. Let me know what you want to know and I'll see if it's part of my experience. Have you researched diabetes on the web? How do you know you have diabetes if your Dr. isn't involved in helping you with treatment?
Carol

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Thanks, Carol. I have been treating myself with the diabetes for 12 years and have seen endocrinologist until now and she referred back to my primary doctor because my AIC is below 7.0 I have studied much and know I want it lower because I was at 6.2 a few years ago and since I am a nutrition nut and raise a garden I continue to work on it. I watched my husband die from not following doctor's instructions and eating like a pig even though I cooked well and quit baking. He ate elsewhere and the marriage really disintegrated so I am motivated but have a social problem at church. The folks there do not eat properly and reject my efforts, and we have food after church every Sunday. I quit going to church this winter because I don't think I am in the right place in my life when I get no respect or encouragement for my lifestyle. My doctor gives me no help at all because he is satisfied with an AIC 0f 6.8. I can't exercise much because of back surgery but I am doing quite well with that, even with two knee replacements. So I need a friend who thinks on my level.

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More: My AIC is 6.8 and is steady and I think I need to lose weight because of blood pressure rise. I am taking many meds for that and it makes me sleepy so I can't do much daily work and the doctor is o.k.. with that. I am 83 and not ready for the rocking chair, although I like to knit. It is too cold and icy for me to walk far outside, and I don't last very long anyway. I went to Florida, ate vegetables, and still couldn't walk very long distances, but I tried. I think what I need is a cheerleader, but a uniform would not be necessary.. Other diabetics do not take this seriously as I do. I don't think I am a food snob but I confess to being a nutrition nut as I had to live with my husband's downslides and his dementia at the end. We think he was losing eyesight as well and I would not ride with him in a vehicle. He made the entire family miserable and wrecked the family business which we closed in 2008 because of the recession. My doctor changed his practice to pediatrics and charges a lot to check my blood and write prescriptions. I will win this battle, I know.

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@dorisena

Thanks, Carol. I have been treating myself with the diabetes for 12 years and have seen endocrinologist until now and she referred back to my primary doctor because my AIC is below 7.0 I have studied much and know I want it lower because I was at 6.2 a few years ago and since I am a nutrition nut and raise a garden I continue to work on it. I watched my husband die from not following doctor's instructions and eating like a pig even though I cooked well and quit baking. He ate elsewhere and the marriage really disintegrated so I am motivated but have a social problem at church. The folks there do not eat properly and reject my efforts, and we have food after church every Sunday. I quit going to church this winter because I don't think I am in the right place in my life when I get no respect or encouragement for my lifestyle. My doctor gives me no help at all because he is satisfied with an AIC 0f 6.8. I can't exercise much because of back surgery but I am doing quite well with that, even with two knee replacements. So I need a friend who thinks on my level.

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@dorisena I was diagnosed with diabetes 2 less than three years ago, so I have not been dealing with this disease as long as you have. It seems that you are doing all the right things by eating healthy and exercising as you can. I know that really matters with diabetes from research, Mayo Connect, and my endocrinologist. The A1C is a debatable number, depending on who is reading it. The American Diabetes Assn. says 7.0 is diabetic; the American Society of Endocrinologists say 6.0 is diabetic, so even the two groups do not agree. Since I go to an endocrinologist, I try to keep my A1C 6.0 or lower. I do not take medicines. I try to eat healthy and exercise as you do and for the time since I was diagnosed, I have held meds at bay. I asked if diabetes can be reversed and have found that it cannot, regardless of the ads. Pre-diabetes can be lowered so that it's not full blown, but when diabetes is in the mix--pre or full blown---there is always a chance that it will get worse if not strictly held in check. I am sorry your husband was not supportive, but some people cannot deal with illness. I also am sorry your church was sot supportive either. I have found that often when someone is ill and cannot be a part of the group, that they are not welcome to try to change everyone else. I'm not sure I think on your level, but I do know what has happened concerning diabetes 2 from my experience. Since you have had the disease much longer than I have, you probably already know what you need to know. Is there something particular you would like to ask? I will be happy to try to answer any particular questions you have.
Carol

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Hi, @dorisena I also have diabetes 2. I am not on any medications and control it by diet.
I am sorry and surprised to hear you have so little support. I think people who are not familiar with diabetes just do not realize how serious it can be. I do realize that, I knew a woman who didn't take care at all, ended up with a couple of amputations, a stroke, and eventually passed away.

Carol (retired teacher) is a really knowledgeable person when it comes to diabetes, I don't think you will find another patient who is as well informed and motivated as she is. I do what I can but, like you, I think because my numbers are generally pretty good I don't get much info from my doctors -- PCP and endo. They are just happy with my numbers. I am sure what you went through with your husband played a big part in your wanting to be as informed as possible, and doing what's best for you.

It sure sounds as if you are doing all of the right things. I hate that you feel you need to not go to your church because of a lack of support. Maybe you could start with just one or two people with whom you are friendly and try to educate them about diabetes and how dangerous it can be. If you can get a couple of people on your side you could start that ball rolling. I find it amazing that if there are many older people in your church there are not many others who also have diabetes. Maybe they are just not saying that they have it.
Good luck. I am happy to answer any questions also, but I think Carol is quite a bit more knowledgeable than I am.
JK

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@retiredteacher

@dorisena I was diagnosed with diabetes 2 less than three years ago, so I have not been dealing with this disease as long as you have. It seems that you are doing all the right things by eating healthy and exercising as you can. I know that really matters with diabetes from research, Mayo Connect, and my endocrinologist. The A1C is a debatable number, depending on who is reading it. The American Diabetes Assn. says 7.0 is diabetic; the American Society of Endocrinologists say 6.0 is diabetic, so even the two groups do not agree. Since I go to an endocrinologist, I try to keep my A1C 6.0 or lower. I do not take medicines. I try to eat healthy and exercise as you do and for the time since I was diagnosed, I have held meds at bay. I asked if diabetes can be reversed and have found that it cannot, regardless of the ads. Pre-diabetes can be lowered so that it's not full blown, but when diabetes is in the mix--pre or full blown---there is always a chance that it will get worse if not strictly held in check. I am sorry your husband was not supportive, but some people cannot deal with illness. I also am sorry your church was sot supportive either. I have found that often when someone is ill and cannot be a part of the group, that they are not welcome to try to change everyone else. I'm not sure I think on your level, but I do know what has happened concerning diabetes 2 from my experience. Since you have had the disease much longer than I have, you probably already know what you need to know. Is there something particular you would like to ask? I will be happy to try to answer any particular questions you have.
Carol

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I am surprised that the fasting number in the morning is going up gradually even though I eat no sugar or sweets at all and try to limit my fruits daily to three. I only eat pasta once per month and limit multigrain breads to one or two per day. So I am decreasing the fat and meat, and limiting the portion size some and seem to be satisfied and not get hungry. Is diabetes expected to get worse with age despite working on control? Is it just the aging process? I know my surgeries limit my work load and I do not ever work up a sweat anymore, but I don't want to think I am fighting a losing battle. I intend to be a winner of sorts. It bothers me that people don't seem to care if I do well so I need the support of those who are on the same team. I take Metformin and wonder if it does help much. I think it brings numbers down in the evening when I take it.

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You want to remember that your body needs glucose for it’s primary source of energy and is capable of producing glucose if there is not enough circulating in the blood. There are many factors that interact so the bs reading reflects these different factors—not just the carbs you consume. How does your A1c look? I chart my daily bs and look at it over time. Is it within my range. Is it gradually increasing or decreasing? Has my activity changed? Has what I am eating changed—i’m Not a person who eats the same thing every day.

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@dorisena

I am surprised that the fasting number in the morning is going up gradually even though I eat no sugar or sweets at all and try to limit my fruits daily to three. I only eat pasta once per month and limit multigrain breads to one or two per day. So I am decreasing the fat and meat, and limiting the portion size some and seem to be satisfied and not get hungry. Is diabetes expected to get worse with age despite working on control? Is it just the aging process? I know my surgeries limit my work load and I do not ever work up a sweat anymore, but I don't want to think I am fighting a losing battle. I intend to be a winner of sorts. It bothers me that people don't seem to care if I do well so I need the support of those who are on the same team. I take Metformin and wonder if it does help much. I think it brings numbers down in the evening when I take it.

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@dorisena I would never say you are fighting a losing battle. At any age we have to think positively and believe we are doing the best we can for our health. I do believe age is a factor in slowing down the workings of our body. My PCP and my endo have both said that is the case; however, it is not a death knell; it just means we are slowing down. I always remind myself that my body has worked hard to let me go 24/7 when I was young, and now it needs to rest and not work so hard. My morning numbers are also high. My endo says as long as they come down after my noon meal that things are still working, just not as fast. If you cut back too much on what you eat, that's just as bad as eating the wrong foods. When my numbers aren't where I want them to be, I do an experiment and eat something that I'm testing to see if it makes a difference. Do you follow the Mayo food pyramid? That is what works for most. If you find one part of it that doesn't, then cut back in that area. My body does not like beef, so I rarely eat it. My protein of choice is chicken and turkey or eggs. So sometimes it's a hit or miss. Every person is different, so you have to find what works for you, but cutting every area of food is not natural. Eat a small portion from each until you discover that something spikes your blood. Another thing you have to remember is that it's not that people don't care; it's that they are probably dealing with something else and have their attention on their own problems. I don't discuss diabetes with other people; they don't want to hear it. I think it drives people away to hear people talking about illness all the time unless it is someone who has the same illness. I agree with @jk about finding other people who have diabetes, and then you can discuss it as a group. Is there a diabetic help group or class offered at your hospital? That would be helpful. They could answer your questions and give you advice. I can understand what you mean, but I don't have all the answers. However, if your Dr. doesn't seem concerned, but you are, check into the group approach. Also don't forget that dieticians can help you with food and plan with you what is right for you.
Carol

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Hello @dorisena

I've been following your posts and the others who have been posting back and I really want to applaud you for all that you are doing to be well and take care of yourself. You show a lot of intelligence in your approach to your health and that is a good thing.

I somewhat agree with what everyone else is saying as the aging process does make a difference in how our bodies react to any and all health problems. You mention your difficulty with exercise because of back and knee problems as well as surgeries. Carol, @retiredteacher, has a discussion group titled Lightening Your Limbs with Friends. Here is the link to those discussions, https://connect.mayoclinic.org/discussion/lighten-your-limbs-with-friends/. Just click on the link and I think you will find some interesting posts.

Are you aware that there are many exercises that can be done seated? I have a number of health situations that make long distance (or even short-distance) walking very difficult and painful and I've found seated exercise groups and/or using YouTube to be very helpful. Here is a link to some of those exercise programs on YouTube, https://www.youtube.com/results?search_query=seated+exercises+for+seniors. Once again, it might not seem like aerobic activity but remember that any activity that gets your body moving is good for burning up some of that excess sugar as well as stress. You might check with a senior center in your vicinity and see what they offer in the way of low-cost exercise classes for seniors.

From what you've said it sounds as if you are keeping your sugar well-controlled and so you need to appreciate that. Perfection in health (or any other area of our life) puts undue stress on us. Perhaps that could a problem for you? Stress can increase blood sugar as well as blood pressure. I can't and won't make that judgment but it might be worth considering.

I'd like to follow your progress. Would you post again?

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Yes, I follow the Mayo diet book, but I eliminate the desserts and sugar. I ate a lot of lean beef and pork when we raised livestock years ago, but now I only have lean beef, from a neighbor farmer, once or twice a week, and I eat a lot of fish, which I enjoy. I eat almost no pork or processed meats. I am eating more eggs but am stiff in the morning and don't like to cook first thing. It is the people who have diabetes who don't want to talk with me or be buddies because they don't follow a strict program of management, and they seem envious of my success. I don't want to compete with them, and they don't want to admit they aren't doing well. This surprises me, because I am a giving, helpful, former teacher, and think everyone wants support and advice. Nope!
So it is best if I avoid social groups that make me feel rejected from their environment. I like the idea of testing a food to see what difference it makes, because our bodies do react differently and our likes and dislikes are different. I grow potatoes but know how badly they spike my blood sugar, while others do not seem to notice much. It matters how fresh the potatoes are, because of how potatoes change their content during storage. Same with carrots.
It is a good idea to change food and have lots of variety, and I like growing a new vegetable each year to see how it grows and if we like to eat it. Thanks for discussing issues with me because it gives me new ideas to try and more motivation to limit portions. On the farm that is very difficult. Our family has given up growing, eating, and freezing sweet corn and it has been a huge sacrifice, but very good for our health and our purses. Obesity and diabetes. Those are the enemies for everyone! The new varieties of sweet corn cost a fortune and the wild critters get the corn the night before we are ready to pick!

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