Trouble with everyday realities of diabetes

Posted by Elizabeth @enska, Jan 24, 2019

Hi everyone, I have type 2 diabetes that appeared about 9 years ago. I've had a really hard time accepting the diagnosis as the years have gone by. I have times where I take good care of it and times where I don't. I was wondering if anyone has tips for keeping up with diabetes every day, including taking blood sugar readings, taking meds regularly, eating right, etc. When I think about doing this every day forever, it frustrates and scares me.

Like I said, I've had a very hard time with this. It seems that just the thought of complications doesn't help. Even actual complications don't scare me into compliance. I think I worry that the complications will happen anyway as I get older. Onset for me was only in my late 20s and I fear that after many years battling this, I'll have complications whether I manage the condition well or not. Does anyone know if that's true?

I also experience severe depression, which I think is the main reason I don't care for myself well enough. It's a tough duo of health concerns to have. Thanks for reading!

Elizabeth@enska I’m sorry I haven’t responded to your post until now. I’ve been struggling with the everyday realities of my diabetes. I hear you. The prospect of managing diabetes for life can be daunting. This is true of all kinds of diabetes. I know this well, but I want to encourage you. I was diagnosed with type 1 when I was 18 years old in 1975. Diagnosis, prevention of complications & treatment has come such a long way since then. I wish that what is available now was available then. For instance there were no home glucometers for blood sugar testing and the HbA1c test didn’t exist. There was little information about complications or what to do to prevent them. In my 20’s I married and had 2 beautiful daughters but the pregnancies were difficult and my babies suffered. In my 30’s & 40’s I began to have access to better treatment & information. Still I had developed complications: retinopathy, neuropathy (peripheral & autonomic), nephthropathy (CKD – chronic kidney disease) and hypoglycemic unawareness. In the late 1990’s when I was in my 40’s my PCP advised that if I wanted to see my daughters graduate HS I needed to pursue a transplant. I looked into islet cell transplant but didn’t meet criteria because I had a history of thyroid disease. I did however qualify for a whole organ pancrease transplant. In 2005 I received a pancrease transplant at age 48. That transplant was like my own personal miracle. I will never regret it but transplantation presents some other complications. In my case I didn’t end up insulin independent, but my insulin requirements dropped greatly and my blood sugars became controlled. The retinopathy and peripheral neuropathy reversed. The autonomic neuropathy (gastroparesis) is controlled with a small amount of medication. The CKD became stable at a mild/moderate level. All this lasted for about 11 years. In 2016 I started to have a decline in kidney function. I met criteria for kidney transplant evaluation. I was examined, approved/accepted for kidney transplant at two facilities. I ended up choosing Mayo in Rochester, MN and being listed there. Since then my kidney function has bounced around between stage 3-4. Last fall at my annual review at Mayo my kidney labs revealed that I’d had quite a bit of improvement in kidney function and was too healthy for a transplant. My waiting list status was changed from active to inactive. The endocrinologist I saw emphatically insisted that I am now type 2 diabetic and prescribed an entirely different treatment plan. Ever since then I’ve been dealing with my insurance/pharmacy coverage to try to get this treatment plan implemented. That is a longer story and a different everyday aggravation. Meanwhile my diabetic and kidney situations are worsening. Labs for both were terrible on Tuesday. I saw my local endocrinologist yesterday and I see my nephrologist next week. We are working out a plan that will hopefully start turning things around for the good. Honestly it is a daily fight. Compared to you I feel like I’m older than dirt and like I’ve seen it all. I don’t want to neglect or minimize your depression. Before the ravages of diabetes caused me to give up my career I was a licensed psychologist. You do have a tough road ahead of you for sure. Find the help for your depression that you need and take advantage of every bit of information and treatment that’s available for your diabetes. I know it is tedious everyday, but you owe it to yourself to take the very best care of yourself that you can. Life is precious and so are you. I hope and pray all the best for you.

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@retiredteacher

@enska I am glad that you found Mayo Connect. Please keep us in touch because we do care. We are in the diabetic situation too. If there is a question we can answer or if we can just stay in touch, we are here. I'm glad you have a Nurse Practitioner who is helpful. Sometimes if someone working with us will just let us get our frustrations out and tell us what to do, we can be more determined to be in control. It's great that you got a good eye report. Diabetes can cause problems, but most are preventable if you follow a routine and are ruling it instead of letting it rule you. I'm glad you are with us and so glad you did not delete. Nothing is too foolish to ask. It's just foolish not to. Knowledge is power.
Have another good day tomorrow.
Carol

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Just diagnosed with type 2 diabetes last week, but very sick and lost 20 lbs over the previous 2 months. Am dealing with tummy pain and jitters, night sweats, numb tingling feet (when they are not hot and burning!). I'm weak and shaky.. wondering how long this will last until the meds begin to help me. What foods will set best with my tummy? Eating anything usually makes that worse. Looking forward to feeling better! I am 76 years old. Have cut out all sugar and that helped with the feet burning I think. I watch my carbs very carefully and don't seem to crave them. Which vegetables could be upsetting my tummy? I do like veggie soups and make it often. Is cabbage a no no? Tomatos?
Thanks for any help/advice you can offer..

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@hotfooted

Just diagnosed with type 2 diabetes last week, but very sick and lost 20 lbs over the previous 2 months. Am dealing with tummy pain and jitters, night sweats, numb tingling feet (when they are not hot and burning!). I'm weak and shaky.. wondering how long this will last until the meds begin to help me. What foods will set best with my tummy? Eating anything usually makes that worse. Looking forward to feeling better! I am 76 years old. Have cut out all sugar and that helped with the feet burning I think. I watch my carbs very carefully and don't seem to crave them. Which vegetables could be upsetting my tummy? I do like veggie soups and make it often. Is cabbage a no no? Tomatos?
Thanks for any help/advice you can offer..

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Your problems don't sound like they are necessarily associated with type 2 diabetes. Could it be type i diabetes which usually makes someone ill until properly diagnosed, from my experiences. My daughter's classmate lost weight and was overheated in school and was soon diagnosed with type I diabetes. The diagnosis saved her life. What are your blood sugar numbers? Are you testing daily or anything?
If you aren't able to eat much at all the numbers would be going lower. If you have lost 20 pounds the numbers would be declining.
There could be something else causing the upset tummy, however cabbage can cause gas problems. If you are doing well on vegetable soup, keep eating it. Stress can cause a rise in blood sugar numbers. Medicines can cause a rise. Sounds like you have an irritable bowel from something, but I am no doctor. I certainly have had more than my share of upset tummy from stress, See the doctor. I cured my irritable bowel on my own because my doctor couldn't help me. He left the medical profession soon after that. Yes, we have so much more knowledge than years ago and I have witnessed huge successes even from type I diabetics. You can get better, but the meds are not the first line of treatment. They are just an aid after you learn to enjoy a low carb diet and exercise more. if this is not working, please get back to the doctor and get help. Dorisena

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@dorisena

Your problems don't sound like they are necessarily associated with type 2 diabetes. Could it be type i diabetes which usually makes someone ill until properly diagnosed, from my experiences. My daughter's classmate lost weight and was overheated in school and was soon diagnosed with type I diabetes. The diagnosis saved her life. What are your blood sugar numbers? Are you testing daily or anything?
If you aren't able to eat much at all the numbers would be going lower. If you have lost 20 pounds the numbers would be declining.
There could be something else causing the upset tummy, however cabbage can cause gas problems. If you are doing well on vegetable soup, keep eating it. Stress can cause a rise in blood sugar numbers. Medicines can cause a rise. Sounds like you have an irritable bowel from something, but I am no doctor. I certainly have had more than my share of upset tummy from stress, See the doctor. I cured my irritable bowel on my own because my doctor couldn't help me. He left the medical profession soon after that. Yes, we have so much more knowledge than years ago and I have witnessed huge successes even from type I diabetics. You can get better, but the meds are not the first line of treatment. They are just an aid after you learn to enjoy a low carb diet and exercise more. if this is not working, please get back to the doctor and get help. Dorisena

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I noticed you are 76 years old. Medicare paid for my visit to the nutritionist at the hospital. My doctor never advised me on eating. I did my own education and changed my diet. When I get sick, which isn't very often because I stay home most of the time, I get really sick and vomit uncontrollably. But it is not caused by the diabetes. I felt just fine when I was first diagnosed and it was a big surprise. I didn't have a hard time giving up sweets because I felt better after losing weight. Feeling good is the best inspiration for eating better. I can't tell you what to eat for diabetes. I can only tell you what foods to avoid, and the nutritionist gave me a book to follow. Dorisena

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I like to communicate with diabetics who get discouraged about the constant adherence to routine required for good health, or at least better health. For me it has not been difficult, and if I share some of the reasons why, perhaps I can inspire others to keep on keeping on, as they say. First of all, I had hypoglycemia in my 40's while going to college with my sons. We commuted and enjoyed those days together so much. My doctor was not helpful or knowledgeable about the subject. He said, after I went through the four hour sugar test and almost died driving home, eat often, and carry cheese with you. So I learned to control my sugar spikes and was in good shape in no time, if I ate by the clock. I thought I was cured. It was shocking to find out years later that I was diagnosed with diabetes and had no idea how I got to that point even though I had studied physiology and enjoyed it very much. I also studied nutrition courses. I grow my own vegetables and some fruit. I was active until I had two knee replacements and back surgery after my husband died from cancer.
But he did not cooperate in treatment of his diabetes, so watching him die was a lesson for me. I will never eat like he did, disobey the doctors, even when they don't know what to advise me, or become so obese I can't stay awake very long and am a threat when driving a vehicle. Working hard on your health has always been a positive experience for me. On one particular diet, I bought new earrings for each five pounds lost. Now that I only feed me, I buy pricey food at the store which can't raise my blood sugar, and feel like a queen eating. I am addicted to Sukoku puzzles, as I love algebra and never feared it.
I am definitely an individualist which makes my life more interesting to explore. It feels good to feel good, so the hard work of adherence is worth it.
I don't try to be like people my age, and I try not to get caught up in conformity. I don't compete with society, and sometimes my shoes and purse don't match.
Who notices anymore? I am not up for any awards for being successful, beautiful or whatever. I spent time helping others because I like doing it.
Some people are not fond of me because I am a little different at times. So what! I study and learn all kinds of interesting things because I have no one to travel with me, and I live alone. It is so easy to turn off the TV these days and watch the robins feed their babies with worms. Never had time for that while I spent my adult life serving others. I was a full time servant, as was the culture in my day. Now I can spend a day being lazy. Sometimes I am just too tired to do everything needed, but I know I can't put anything harmful in my body if it is not in the house. I am too laid back to drive to town to purchase "goodies."
Standing in the shower and heating my sore back and wasting some water is cheaper than high priced therapy. Besides, my husband took two showers a day, so I am only using part of that hot water cost. Today I picked magnolia blossoms and put them in a dish in the kitchen. It brightened a rainy day.
If you lived next door, i would come over and we would drink tea and compare notes. Know that I am here on your low days. I can sweep the kitchen tomorrow. No one is coming to visit anytime soon. I am over the depression from mourning my brother's death last year. Now my carpenter friend is near death. Billy Graham said he did not die. He just has another address. Sounds good to me. Dorisena

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Hi, everybody. I've just been diagnosed with diabetes type 2 and I've a question. I can't see the dietitian until the end of May, and all my pcp said was 30 grams carbohydrates three times a day, with two snacks of 15 grams. I feel like I've been thrown into the deep end of the pool with no life preserver. I'm just over the prediabetes threshold, am not overweight, exercise regularly, etc. However, I've only one CKD kidney stage 3 and IBSd, both of which require special diets of their own. How much wiggle room do I have dietwise? At least until I can get a handle on all this. And kamama94, I'll be taking my copy of your recipe book with me. One thing I'm not prepared to do is to up my IBSd to ulcerative colitis – at 80, there's a quality of life issue, I think.

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@trishanna

Hi, everybody. I've just been diagnosed with diabetes type 2 and I've a question. I can't see the dietitian until the end of May, and all my pcp said was 30 grams carbohydrates three times a day, with two snacks of 15 grams. I feel like I've been thrown into the deep end of the pool with no life preserver. I'm just over the prediabetes threshold, am not overweight, exercise regularly, etc. However, I've only one CKD kidney stage 3 and IBSd, both of which require special diets of their own. How much wiggle room do I have dietwise? At least until I can get a handle on all this. And kamama94, I'll be taking my copy of your recipe book with me. One thing I'm not prepared to do is to up my IBSd to ulcerative colitis – at 80, there's a quality of life issue, I think.

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@trishanna, you might be pleasantly surprised at what you can eat. BUT I have to ask you not to take a copy of the cookbook with you because it isn't finished yet and there are mistakes in the rough draft I posted. I posted it as much for feedback from others in the group about the recipes themselves. My doctors still are going over it so I can come up with a finished and final copy and once that's done, feel free to give it to your docs and anyone else who might want it. But let's hold off until then. One other thing I do need to tell you about the cookbook and that is it doesn't contain carb counts but is based on the "old" calorie counts because vegetarians and vegans do consume more carbs than meat-eaters. Later on I may include carb counts in an additional version but they're not in this one.

Let me do this: I'll post the newest draft here in a few minutes and that draft you can take with you if you explain to anyone you share it with that it isn't finished yet and my medical team hasn't finished evaluating it. Give me ten minutes or less, OK?

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Still a draft, now pending medical review and probably will be finalized within a month or so. Meanwhile feel free to use, share, etc., as long as you inform everyone it's not finished and still is under review. Thanks!

Shared files

DIABETIC AND RENAL FRIENDLY ALMOST - Copy (DIABETIC-AND-RENAL-FRIENDLY-ALMOST-Copy.pdf)

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@kamama94

@trishanna, you might be pleasantly surprised at what you can eat. BUT I have to ask you not to take a copy of the cookbook with you because it isn't finished yet and there are mistakes in the rough draft I posted. I posted it as much for feedback from others in the group about the recipes themselves. My doctors still are going over it so I can come up with a finished and final copy and once that's done, feel free to give it to your docs and anyone else who might want it. But let's hold off until then. One other thing I do need to tell you about the cookbook and that is it doesn't contain carb counts but is based on the "old" calorie counts because vegetarians and vegans do consume more carbs than meat-eaters. Later on I may include carb counts in an additional version but they're not in this one.

Let me do this: I'll post the newest draft here in a few minutes and that draft you can take with you if you explain to anyone you share it with that it isn't finished yet and my medical team hasn't finished evaluating it. Give me ten minutes or less, OK?

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Kamama94. You are most kind, but unfortunately my printer is down and since it's a Microsoft malfunction, it will be a while before it's up and running. Also, my appointment with the dietician isn't until May 30. You are most fortunate with pcp, etc. My doctor explained what diabetis was and said goodbye. So, I have no one to discuss diet, etc., with. What I was asking, as an example: If I have 47 carbs at my 30 carb dinner, am I in big trouble?

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@trishanna

Kamama94. You are most kind, but unfortunately my printer is down and since it's a Microsoft malfunction, it will be a while before it's up and running. Also, my appointment with the dietician isn't until May 30. You are most fortunate with pcp, etc. My doctor explained what diabetis was and said goodbye. So, I have no one to discuss diet, etc., with. What I was asking, as an example: If I have 47 carbs at my 30 carb dinner, am I in big trouble?

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@trishanna, I'm not qualified to give medical advice but I can tell you what I would do if I had 47 grams instead of the 30. If it was occasionally I personally would not be too concerned for myself. Counting carbs is as much a pain as counting calories but labels on most food tell you the carb count and there are several websites that can track them for you or at least list the carbs in various foods. One is https://nutritiondata.self.com and another is https://www.diabetesselfmanagement.com and one more is https://www.diabetescarecommunity.ca

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@kamama94

@trishanna, I'm not qualified to give medical advice but I can tell you what I would do if I had 47 grams instead of the 30. If it was occasionally I personally would not be too concerned for myself. Counting carbs is as much a pain as counting calories but labels on most food tell you the carb count and there are several websites that can track them for you or at least list the carbs in various foods. One is https://nutritiondata.self.com and another is https://www.diabetesselfmanagement.com and one more is https://www.diabetescarecommunity.ca

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Kamama94. Thank you so much! I go online as much as possible, trying to learn, and I will. It's just that right now, I'm a bit overwhelmed. Still caretaking my husband, who is not on any diet except like/or/dislike, but physically, it's not easy. I read how all of you have coped, and I'm so impressed!!!!

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@trishanna

Kamama94. Thank you so much! I go online as much as possible, trying to learn, and I will. It's just that right now, I'm a bit overwhelmed. Still caretaking my husband, who is not on any diet except like/or/dislike, but physically, it's not easy. I read how all of you have coped, and I'm so impressed!!!!

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@trishanna, I admit it's a struggle at times but worth it. And you can do it! You go, girl!

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