Living with Diabetes, how bad is it?

[MouseWorshipin]

I know I said I was going away, but here I go again.

...those of us who do not have the professional training and give advice are giving it based on our personal knowledge and situations.

... oh but I do love a big bite of a donut! LOL.. more insulin!! ...........................So the docs feel as do I.. that I am a successful diabetic.

OK, see there is the problem. Some stuff can be helpful and some can be harmful. If you take what mamajoan said about eating the wrong stuff and taking extra insulin and you believe that this is a successful way to handle diabetes, and you do the same thing, you're in trouble.

It's a common thing for DM patients to do. They figure, well this raises my glucose levels, and insulin lowers them, so I can eat this stuff and just take more insulin. Not true! It's a big no-no.

Of course, other stuff people post could be helpful. The problem is that without your doctor's advice, you cannot tell the difference. Plus, what is appropriate for one DM patient may not be for another. The best endocrinologist in the world wouldn't give advice until he reviewed that particular patient's history.

I have a gazillion DM horror stories. I don't see the (OK, I don't have the figures, but I'm guessing it is a very high percentage) majority of healthy diabetics. I see the ones who are bad off. For some it is simply the disease, and others just don't help themselves. But I see it all the time.

I know that most people do very well with DM, and I'm not trying to scare anyone. I'm just thinking that if I can shake some sense into the OP...if I can get someone to go to their doctor, and do what he tells them, then next week or the week after when I watch another one die, I'll at least know that maybe, THIS ONE TIME the scales balance and someone lives, too.

It's like kids playing in the street. You don't know for a fact that a car WILL come along and hit your kid, but you darn well that one could. So you urge your kid not to do that, and tell them what could happen if they do.

 

[Cheshire Figment]

I know that most people do very well with DM, and I'm not trying to scare anyone. I'm just thinking that if I can shake some sense into the OP...if I can get someone to go to their doctor, and do what he tells them, then next week or the week after when I watch another one die, I'll at least know that maybe, THIS ONE TIME the scales balance and someone lives, too.

I agree with you completely. I think that most of us who are regular on this forum try to help people, but more with suggestions rather than orders. You might look at some of SueM's comments; she balances being a RN as well as being the mother of a severely disabled teenage daughter as well as spending time moderating this forum.

Please don't leave, you can probably provide lots of good suggestions. However, realize that people asking questions here are not asking a doctor's professional advice but general suggestions and definitely not preaching.

I have had Type II for over ten years. Once in a while I will eaat or drink something that I shouldn't; however I do not do that either routinely or to excess. My problem tends not to be the trips into the upper 200's, but the times I wake up at 3am with a BSL below 50.

BTW, I personally appreciate having a professional show up who can correct major errors; I do that myself (as a retired CPA) in the Budget forum when there is something concerning taxes or banking.

 

[SueM in MN]

I agree with Cheshire Figment.
There is an old saying that “the physician who doctors himself has a fool for a patient” . IMHO, anyone who is getting all their medical advice from an internet bulletin board is in the same boat.
But........
whatever condition or disability, there are peer support groups. This has been the case since before the days of the internet (back in the dark ages when I first got into nursing). The peer support groups are where people can talk with other people in the same situation as themselves and get some practical advice.
Is all of the advice good? No, but there are people who will come out and say "wait a minute". And, people can always go back and ask their doctor "I saw/heard this suggestion. Do you think it's a good idea for me?"
I was a nurse in Public Health for a long time, visiting people (a lot of them diabetics) in their homes. They talked to me a lot about "advice" (some of it unasked for) from other people. I'd rather see people on a forum like this with give and take than some of the alternatives.

And, for the record, even though mamajoan wrote this

... oh but I do love a big bite of a donut! LOL.. more insulin!! ...........................So the docs feel as do I.. that I am a successful diabetic.

she also wrote this

I felt I was failing if I did not have perfect results. AND then I got a doc who helped me understand the variables of diabetes.. sometimes no matter how ''good" I am my Blood tests will not be perfect. It is ez to go into denial.. but you have to SNAP out of it!
So... I take care of myself as best I can. I try to keep in good control ( which I am) I take my BS a minimum of 4-6 times a day, I take my meds, I exercise and I eat fairly well

I have been nurse for people who either tried to do everything perfectly (and in the end were not living, just existing within a very narrow set of rules) or people who figured since they could not do it perfectly, they may as well just give up.

I shared a hotel room at a conference with a diabetic (an RN, no less) who made me very nervous with what she was doing. I think she had given up and figured as long as she "covered" herself with insulin, she could do anything. She had tried to do everything perfectly "right", but already had a heart attack at age 50 or so and figured no matter what she did, she couldn't win.
Her diet made me cringe, though; for example, her breakfast was 2 large waffles with 2 pads of butter and 4 packets of jam, 2 boxes of cereal with whole milk and sugar (2-4 packets, and it was sugared cereal to start with), 1-2 orange juices, a glass of milk and coffee with cream and 2 sugars. She "balanced" it all with her insulin. Her lunch, supper and 2 snacks were similar. She complained all the time about how she was feeling (and complained that we had to walk about 4 blocks from our hotel to the conference center).
I couldn't help feeling that she would feel a lot better if she changed her life a little more. If an occasional bite of doughnut helps someone keep on the path they need to go, that sounds good to me (and them encouraging other people to sometimes do the same, sounds good too as long as everyone understands it's a walk off the path, not the permanent path).

 

[Selket]

If you take what mamajoan said about eating the wrong stuff and taking extra insulin and you believe that this is a successful way to handle diabetes, and you do the same thing, you're in trouble.

Can we just stop here for a second? Mamajoan, like my son who is 4 yrs old, is a TYPE ONE diabetic (caps for emphasis) - he has been type 1 for almost two years now - since he was two years old. I think most of the discussion has centered around type TWO diabetes. Everyone needs to realize that there is a HUGE difference between the two conditions even though they are both called diabetes.

If William does not take insulin he does not live - his body does not make insulin at all at this point. He can't eat the most healthy diet without taking insulin - he has to have insulin. Exercise and diet will NOT control his diabetes, or mamajoan's. I highly recommend the book "Sweet Kids" to anyone wanting to understand how to handle children, eating and type 1 diabetes.

As a parent of a type 1, and I know many other parents of type 1's who feel the same way, it is very annoying to try to give our children a healthy and somewhat normal diet and be criticized for letting them have a donut! I had gestational diabetes with one pregnancy and type 2's in my family and I understand the relationship type 2's have with food. I found it took much more planning in some ways - to eat a donut as a gestational diabetic (and I just didn't eat donuts - I managed to get a candy bar in with a lot of walking ,etc). I can give William a donut and cover with insulin. This doesn't mean he can live on donuts, but he is 4 years old. It is a HUGE challenge to raise a type 1 child and allow them occasional treats and indulgences and not have them grow up to have a huge mental complex about food. I truly feel if he is denied an average amount of treats it will cause more problems down the road (sneaking candy and so forth). I want to TEACH him how to eat donuts, candy, whatever.... responsibly. And cover with insulin. And NOT be afraid of food.

It amazes me that at times when I've taken William to the doctor for various things (a virus, his asthma, etc. especially if I go to after hours care at my HMO) that I end up explaining insulins and pumps and so forth to the doctors - most are really rather clueless unless it is their speciality. They aren't dumb - they just don't see many type 1's or treat them. Some doctors seem stuck with the idea of NPH and regular and don't realize there are other insulins or what they do, etc. One doctor wanted to know what PILLS he was on for his diabetes - I was frankly embarassed for the man! A type 1 can't control diabetes with pills. I just put that out there as an example of what type 1 folks face at every turn - even with the medical community - in understanding and treating them.

I am no expert on type 2's - I'll leave that to the majority here who know that best. But for a type 1 diabetic there is NO "wrong stuff." Mamajoan is absolutely on the right track for a type 1 - eat well, take care of yourself and having a treat now and then and covering with insulin is perfectly acceptable.

 

[Talking Hands]

This is why I hatge it when type 2 diabetics say they are insulin dependent. NO they aren't they are insulin using but they could with changes in diet and lifestyle become diet controlled or only need pills.
I will never be able to go off insulin. Doesn't matter what I do it will not happen. I just don't make insulin. And the bad thing is I also have a compnonent of type 2 in that I need larger amounts of insulin than the normal type 1. Call me type weird.
Yes sometimes I have to chase the BSs but most of the time I am in the right range of 80-110 fasting. So for me it is carb counting and injecting for the rest of my life. Complications, at the moment, none.
Thank God my work accommodates the fact I need to test and inject at school. ANd those I interpret with and for know if I ask for sugar I need it fast and will get it for me. It happened at a workshop last week.

 

[mamajoan]

Mamajoan checking in here...

Thanks for having my back!! I appreciate it! You all know where I was coming from in my last post.


really I am ok. I am not using my insulin to run willy nilly thru Krispie Kreme.. LOL
Altho- it is a dream to be slathered in bavarian creme.... but that is ot.. LOL

I guess I just wanted to let the OP know that having a sense of humor and a sense of moderation helps me continue to live. Depression and Diabetes can go hand in hand too. I wanted to let the OP know that I felt upset with my diagnosis- being diagnosed Type I after being comatose-DKA can bum a person out. I wanted to have control of my life. I wanted a functioning pancreas. I wanted OP to know That you have to snap out of the denial if you want to lead a productive life. I wanted her to know she was not alone in feeling what she was feeling. I wanted her to know that she has a choice.

There are horror stories abound... those of us in the medical profession see some bad stuff. We just want to help. So keep helping...

OH and for those of us who have been around this board for awhile.. .
we remember when Selket's was just starting to learn about Diabetes..It has been amazing to see what she has accomplished for her son, the vast knowledge she has gained and the confidence she now has in dealing with Diabetes.

Thanks guys!! just say no -to snicker bars !

Best wishes to all! and OP.. get all the support you need, ask all the questions you must... but check in with your doc and diabetic educator.

 

[HappyLawyer]

Mamajoan checking in here...

Thanks for having my back!! I appreciate it! You all know where I was coming from in my last post.


really I am ok. I am not using my insulin to run willy nilly thru Krispie Kreme.. LOL
Altho- it is a dream to be slathered in bavarian creme.... but that is ot.. LOL

I guess I just wanted to let the OP know that having a sense of humor and a sense of moderation helps me continue to live. Depression and Diabetes can go hand in hand too. I wanted to let the OP know that I felt upset with my diagnosis- being diagnosed Type I after being comatose-DKA can bum a person out. I wanted to have control of my life. I wanted a functioning pancreas. I wanted OP to know That you have to snap out of the denial if you want to lead a productive life. I wanted her to know she was not alone in feeling what she was feeling. I wanted her to know that she has a choice.

There are horror stories abound... those of us in the medical profession see some bad stuff. We just want to help. So keep helping...

OH and for those of us who have been around this board for awhile.. .
we remember when Selket's was just starting to learn about Diabetes..It has been amazing to see what she has accomplished for her son, the vast knowledge she has gained and the confidence she now has in dealing with Diabetes.

Thanks guys!! just say no -to snicker bars !

Best wishes to all! and OP.. get all the support you need, ask all the questions you must... but check in with your doc and diabetic educator.

Thanks for the kind words, thanks to everyone that gave great and positive feedback and suggestions, at least i have a foundation to start and know what questions to ask my doctor.

 

[minnie61650]

ok i have a problem with checking the sugar, i know but it really hurts so bad my poor fingers, and i just get really frustrated in doing so, there is a long story behind it but i had a surgery that went bad and for a year and a half i was being pricked and had my insides packed like 3 times per day, so i get frustrated at the thought of pricking my finger, i guess i will need to get used to the idea.

Heres a tip.....
When using your lancet to test blood sugar. Poke the side of your finger near the nail instead of the middle part o your finger.
It hurts a lot less as the side of your finger has less touch sensors. It has really helped me. It hurts a lot less. Everytime they test me at the hospital or in the Dr.'s office I remind them to do that. That helps to educate the nurses and medical staff also.

 

[FionaLovesShrek]

Heres a tip.....
When using your lancet to test blood sugar. Poke the side of your finger near the nail instead of the middle part o your finger.
It hurts a lot less as the side of your finger has less touch sensors. It has really helped me. It hurts a lot less. Everytime they test me at the hospital or in the Dr.'s office I remind them to do that. That helps to educate the nurses and medical staff also.

I have found that the nurses often tend to just jab deeply to get their blood. Every patient is different, some have tough callouses and so the nurses go for a deeper stick so they don't have to prick twice. Ouch when you are tender skinned! At least at home, you can set your lancet for the stick that suits you. I agree the side of the fingerpad is best. HappyLawyer I hope you found encouragement through this thread, denial at the diagnosis is normal. After all we know we don't want it, and we tell ourselves that we feel fine, no symptoms or we deny our symptoms. Many tend to wait until the disease smacks em up the side of the head before getting serious about learning about what is going on with their bodies and how to work with the medical professionals to control it. Every person is different and only you and your doctor can find the best treament together. Asking questions is the beginning to acceptance and management. I personally think this is a great place to come for questions. There are just some situations where we need to know from a personal standpoint, how others are dealing with a likely situation. It's like talking with a friend who can help and encourage. I understand the medical professional's standpoint, but as long as you have been encouraged and you feel you are ready to go to your medical professional to work our the best treament for you, then this forum did what it's here for.

 

[MaryPA]

I have read through this whole thread and I found it very enlightening. I appreciate the comments that all have made. I am a type 2 diabetic and have never heard about testing on the side of finger, I will try it now.

My own small personal tip: I was using alot of the hand sanitizers and they were actually drying out my hands which made it more painful to test - a Diabetic RN told me to use soap and water as often as I can and limit the sanitizers to when absolutely necessary. This really helped me.

 

[SueM in MN]

I have read through this whole thread and I found it very enlightening. I appreciate the comments that all have made. I am a type 2 diabetic and have never heard about testing on the side of finger, I will try it now.

My own small personal tip: I was using alot of the hand sanitizers and they were actually drying out my hands which made it more painful to test - a Diabetic RN told me to use soap and water as often as I can and limit the sanitizers to when absolutely necessary. This really helped me.

Actually, if you are using an alcohol hand sanitizer that has mositurizers in it (some of the "store brands" don't), studies have shown hands actually are in better condition with using alcohol hand sanitizer than using soap and water.
I am an Infection Control Specialist (and a certified "Hand Hangiene Geek"). I won't go into the reasons why alcohol leaves your hands in better shape than soap and water, but studies have shown it to be true.

I know personally, my hands are in better condition on days that I work because when I clean them, I am using a moisturizing alcohol hand sanitizer. When I'm home, I am using more soap and water.

What will make testing more painful with alcohol is if you don't allow it to dry thoroughly before doing testing. The lancet going thru the skin takes a tiny bit of alcohol with it, which stings.

 

[bumpysheep]

I would disagree with this statement especially in type 1 diabetics. Diabetics definately affects the quality of my life and my ability to participate in normal life activities fully even though I am in good control. Without accommodations as to meal times and testing I would be unable to control my diabetes and would end up with the many complications of diabetes. Without accommodations to allow my eating in the classroom if my sugar drops I would end up in the hospital. It is kind of a catch 22 situation because I can live life fairly normally with accommodations allowing me to test and correct lows and highs but without those accommodations controlling my diabetes isn't possible.

I totally agree. This is also even more true if you have type 1 diabetes and other conditions as well. I have type 1 diabetes and wear a pump but because of my other conditions my diabetes is very hard to control. I have almost no memory for what is not routine and I've been diabetic most of my life and still haven't got a routine down. Add in glucose skyrocketing or plummenting from other meds (try having asthma uncontrolled and having to use steriod inhalers regularly, its a nightmare!) it's a real hard thing to deal with. I wear a pump and check 4-8 times a day, and I'm doing all the right things and I've had serveral ketoic comas and had seizures from low glucose, not to mention the many ER visists.

Grandted I have several other health issues that complicate matters but in many type 1's diabetes is a very real disability. I'm only 24 and have an ataxic gait and diabetic neuropathy from living with diabetes. Type 2's have an easy walk in park if they take care of themselves most of the time and I often find it's the type 2's like that orginal poster that don't consider it a disability.

 

[mamajoan]

saying that Type II diabetics have an easy walk in the park if they take care of themselves is a realllly broad statement. One with which I disagree. Type II diabetics have lots of things to juggle too.. Each individual has to deal with their disease, its issues and its outcomes .
Sometimes people can really be on top of things, caring for themselves the best they can, complications arise and things go wrong.

Information and empathy is important to anyone dealing with diabetes, be it Type I, Type II, insulin, oral meds or diet controlled.



oh.. and as for finger sticks with the lancet...I find that rinsing my hands in nice, really warm water, helps the blood flow a bit easier... especially on cold days. When I was hospitalized, I asked the nurses for a wet, really warm washcloth to cover my fingers with before we did the glucose testing.
different pokes for different folks!

 

[SueM in MN]

oh.. and as for finger sticks with the lancet...I find that rinsing my hands in nice, really warm water, helps the blood flow a bit easier... especially on cold days. When I was hospitalized, I asked the nurses for a wet, really warm washcloth to cover my fingers with before we did the glucose testing.
different pokes for different folks!

We used to do that at diabetes screenings when I worked in Public Health (or, I should say, we would send people to the bathroom to run warm water over their hands). Blood does not flow well from fingers during the winter in Wisconsin.

And, I agree wholeheartedly with this:

Information and empathy is important to anyone dealing with diabetes, be it Type I, Type II, insulin, oral meds or diet controlled.

One of my grandmothers was a Type II diabetic and had a great deal of trouble taking care of herself. She ended up blind, with foot ulcers and generally in very bad shape.
Diabetes can be a cruel disease in whatever form.

 

[Selket]

Yes, diabetes is a serious disease no matter whether Type 1 or 2. I think I already mentioned my type 2 brother who does not take care of himself. I do fear he'll have many complications down the road

Type 1 tends to affect people when they're young - I think the risk of complications is perhaps higher just because of the length of time dealing with the disease. I always fear that William, because he was dx'd when he was just 26 months old, will have a much greater risk of problems than someone dx'd as a teenager - or a type 2 person dx'd when he was 50.

However there are just so many factors (age, other health problems, access to medical care and medical advances, etc) that it is hard to say who will have the better outcome. I've met type 1's who seem healthier than me - type 1 moms in their 40's with kids and no major health problems. I've met others even younger who are not so fortunate.

I think having a really young child with type 1 diabetes is different than having a teenager with it too. Not that one is any easier - just a different set of challenges is what it seems to me.

mamajoan - I remember your email to me after William was dx'd! I am hoping the 2 of you will some day be able to at least occassionally run willy nilly through Krispy Kreme together eating every last donut

 

[bumpysheep]

saying that Type II diabetics have an easy walk in the park if they take care of themselves is a realllly broad statement. One with which I disagree. Type II diabetics have lots of things to juggle too.. Each individual has to deal with their disease, its issues and its outcomes .
Sometimes people can really be on top of things, caring for themselves the best they can, complications arise and things go wrong.

Information and empathy is important to anyone dealing with diabetes, be it Type I, Type II, insulin, oral meds or diet controlled.



oh.. and as for finger sticks with the lancet...I find that rinsing my hands in nice, really warm water, helps the blood flow a bit easier... especially on cold days. When I was hospitalized, I asked the nurses for a wet, really warm washcloth to cover my fingers with before we did the glucose testing.
different pokes for different folks!

Do you have a reading problem? I said "Type 2's have an easy walk in park if they take care of themselves MOST OF THE TIME and I often find it's the type 2's like that orginal poster that don't consider it a disability."

 

[SueM in MN]

Please, no need for confrontation.
We got thru 10 pages of discussion where many people were in disagreement on a thread about Segways without problem. I don't want to have to close a thread about diabetes because it gets too hot to handle!

 

[bumpysheep]

Please, no need for confrontation.
We got thru 10 pages of discussion where many people were in disagreement on a thread about Segways without problem. I don't want to have to close a thread about diabetes because it gets too hot to handle!

I'm not being confrontational, I was repeating what I said for clarification because it seemed clear to me the person missed "MOST OF THE TIME."

NT's ugh.

 

[SueM in MN]

I'm not being confrontational, I was repeating what I said for clarification because it seemed clear to me the person missed "MOST OF THE TIME."

NT's ugh.

OK. I understand you were not trying to be confrontational, but starting a post out with a quote from someone and

Do you have a reading problem?

is usually looked at as confrontational, not clarification.
Thanks.

 

[Figaro]

I am an insulin dependent type 2 diabetic and have been on Byetta since August 4, 2005. I have lost almost 90 pounds and have not had a single incidence of high blood sugar starting 6 weeks after beginning Byetta. My c-peptide tests show that the beta cells in my pancreas are regenerating. Type 2 diabetes is NOT a simple gain weight and get diabetes type of disease. There is almost for sure an auto-immune component to it, as there are many, many people who are overweight who don't develop diabetes as well as a significant number of people of normal weight who do.

I am now off of novolog, glucophage and actos. It is extremely simple to lose weight when I am not hungry And with Byetta, I am not hungry anymore. For diabetics with no beta cell function, Symlin (like Byetta but without the beta cell stimulating stuff) is also helping type 1 diabetics gain control.

Here's a website with links to information about Byetta, Symlin and diabetes. Dr. Bill is an absolute sweetheart who runs the blog out of the goodness of his heart and to try and help diabetics: http://www.diabetesmonitor.com/ Scroll down to the discussion blogs for more information.

And to bring it back to Disney Byetta is very fussy about temperature and needs to be kept between 36-46 degrees. Traveling is a bit of a challenge and I am sure that going to the parks will be as well.