Looking back, what do you wish you had known?

Jeanette Terry
By Jeanette Terry Latest Reply 2011-12-27 04:07:28 -0600
Started 2011-05-24 10:32:14 -0500

The other day I was looking back to my early days with diabetes when I was just newly diagnosed. There are a lot of things that I wish I had known or that someone would have told me. Diabetes seems to be kind of a trial and error sort of disease. Everyone finds what works best for them over time.

When you look back, do you remember how you felt? What do you wish you had known then that would benefit you now?

83 replies

2011-12-24 16:19:07 -0600 Report

This I'm sad to say, I wished that I heeded my doctors warning. A year before I was diagnosed, he told me that I was boarder lined. Well I didn't heed his warning to loose weight, & now,it's 16.5 years later, after I was diagnosed, I gave myself a disease that is really hard for to get a hold of. My b/s are up & down like a damn yo-yo. The Drs can't put me on any type of insulin, because my body cannot tolerate it. I need to be put on additional meds but the Drs won't do it. And I found out a few weeks ago that my pancreas went on a permanent strike. So as of right now I wish that I had heeded my doctors warning. But we all know that hind sight is always 20-20.

GabbyPA 2011-12-26 07:33:45 -0600 Report

If you pancreas is not working and you are not able to take insulin, what do they do for you?

2011-12-26 11:07:09 -0600 Report

That's my problem Gabby. My Endo is not sure what to do w/me. He's still checking around w/his colleagues to see what the next step will be.

Caroltoo 2011-12-24 14:29:08 -0600 Report

I think I would go back to before I was diagnosed and say that I wish I had not believed the information that we were all taught in the 70's and 80's about pasta and rice being so "good" for us. Tasted great, but we surely didn't need the quantities (up to 50% of our food intake) that we were encouraged to eat because it was "healthy and necessary".

The other thing would be education about how sleep deprivation occurring for ANY reason over a prolonged period can lead to serious complications like D.

I also wish, when I was told I was pre-diabetic, that I had also been taught what I needed to know to stop it then. Instead, I got a one-liner from my doc who said "you need to eat less, loose weight, and exercise more". Duh…he had been saying that for years and I had continually told him, I did exercise, I ate 1000-1200 calories per day, and I wasn't loosing weight!!!!! He thought I was cheating on my calorie counts or exercise, in fact I was flagrantly developing insulin resistance, but it remained undiagnosed because of his assumptions.

Thank goodness, we know these things now and they can be shared so, hopefully, some others can avoid developing Diabetes.

Young1s 2011-12-26 10:03:02 -0600 Report

I didn't know that sleep deprivation could be an underlying factor to D developement. I spent the better part of my 30's staying up til about 3am, going to bed, waking at around 7am or so and then going through the day feeling like a zombie. Only to start the process over again.

Caroltoo 2011-12-26 13:08:21 -0600 Report

Yes, I've just read this in a few articles over the last 5 years or so. Seems a fairly recently acknowledged connection.

Old-n-Grey-n-Wiser 2011-12-26 15:30:59 -0600 Report

I would be curious to see a study done on shift workers which shows the difference in how many more on each shift have diabetes the numbers fro each of the three shifts. The local paper mill has swing shifts, you work one week on each shift then start over, they never know if they are coming or going, and some times meet themselves in the door!

Old-n-Grey-n-Wiser 2011-10-18 11:06:38 -0500 Report

If I would have known that after 10 years the metformin was going to almost destroy my kidneys and in turn cause heart damage I would have welcomed insulin with open arms.

MarleneSophia 2011-12-24 01:07:35 -0600 Report

I'm new to these discussions but I really wanted to respond to this as I'm on Metformin 500 mg times 3 per day and I'm considered uncontrolled. I just finished a 3 month investigational study and now my dr wants to put me on additional medication like byetta. I'm wondering should I just take the insulin that she wanted to give me months ago but I was too scared…

Jen031908 2011-12-24 14:07:12 -0600 Report

I would take the Insulin, I'm in the same boat and tried Byetta but had an allergic reaction to it, I started getting these little round itchy spots where I injected it a month and a half after using it. It is also extremely expensive if you have a high deductible or no insurance it is around $348. I'm currently taking metformin and glyburride along with Lantas at night and my blood sugar is still ranging between 140 and 200 at fasting. I see my doctor next week and I am going to ask him to be put on just insulin after reading these posts.

medic673b 2011-10-17 15:54:43 -0500 Report

I curse my doctor for ever telling me the dreadful news why not just let me live the rest of my life care free and happy

SCLWKR 2011-12-24 16:05:18 -0600 Report

The thing about diabetes is that you would not have lived your life "happy and free." You would have experienced serious physical complications including loss of vision, amputations, and immobility and dependence on others, if they would be willing to take care of you. You don't just go to bed one night and die peacefully in your sleep. No, it is a prolonged, torturous way to go. I am sorry you feel anger at the "messenger", your doctor, rather than directing the energy to take as much control as you can over diabetes. You still have the choice to live your life as you wish, why not ignore the condition and do what makes you happy? No one is stopping you from that. Just make arrangements so that your loved ones are not negatively impacted by your choices. Fortunately, everyone is diferent and some fight the good fight and others would prefer to put their heads in the sand. But, as I have learned, just because I may be tired of thinking about diabetes, that does not mean it will go away. And I know that I have control over the way I eat, the time I exercise and the priority I place on taking my meds. I choose not to surrender to a disease I can make a positive impact on and diabetes is one such disease.

jayabee52 2011-10-18 05:46:44 -0500 Report

It wasn't your Dr's fault that you got the dreadful news. It was your body which malfunctioned. And how long do you think your body would have let you continue with your "care free and happy" life? There are a LOT of nasty, painful, debilitating and embarrasing complications you can get from UNcontrolled diabetes. Those who suddenly die due to diabetes complications are few. Most people with uncontrolled diabetes, the "diabeast" takes a bite out of them one or two bites at a time.

2011-12-24 16:26:54 -0600 Report

Can't they J~A~B~ just take one huge bite and be done with it? Like I said, I gave myself this disease 16.5 years ago. Can't this damn disease just do what it wants w/me and then leave me alone? Wait, I almost forgot. It has taken my pancreas and made it completely & utterly useless. And I've been on Metformin for as long as I've been a diabetic, I wouldn't be a bit surprise, if my kidneys went the same way. Having this disease really SUX!!

jayabee52 2011-12-25 06:01:43 -0600 Report

I understand your feelings Lisa. However I want to as gently as I can correct one thing: YOU did not give yourself this disease. Something happened to your pancreas which caused it to wear out or break down. It was not your fault.

You CAN do what you want about diabetes, fight it or ignore it. If you ignore it the diabetes may not be kind to you, and take you a piece at a time. I am down that road a bit, and it is not what I would call fun, but I am not going to lay down in the coffin just yet. Someone else is gonna have to place me in there and nail down the lid in case I get out.

2011-12-26 01:56:26 -0600 Report

You're a great friend James, but I have to disagree w/you. I will always believe that I gave myself this disease. I was diagnosed w/it when I topped the scales at 285! I will always be a firm believer that I gave myself this disease. The only exercise I got back then was wobbling to & from the kitchen w/ huge plates of food, and sitting right back in front the TV. The only type of wt lifting that I did, was lifting a forkful of food to my mouth. AND it was always the wrong type of food. I didn't heed my doc's warning when he said that I was board line I just kept eating away, getting fatter day by day. Until I get a call from my doc saying that I am now a diabetic. I gave it to myself because I was just a HUGE FAT slob. I thought I was invincible. "It'll never happen to me" I thought. Well, it did happen, & now I have this disease that I gave to myself. The only ones that I can blame is, "Mr Goodbar, 3 musketeers, Ben & Jerry's, etc. This is what happens when you overdose on food. You get fat,gainwt, & become diabetic. (In a nutshell kinda.)

jayabee52 2011-12-27 04:07:28 -0600 Report

OK Lisa, I guess we'll have to agree to disagree on that one.

A person cannot tell ahead of time how one's actions are going to affect one's health.

I have friends and family who are MORBIDLY obese, yet they do not as yet have diabetes. Will they ever? Who knows? I am convinced that if one has the genetic markers for diabetes then the best one can do is fight a delaying action with the beast.

Could you have made better choices? OF course! That is what is frustrating about this disease. Our hindsight is unfortunately 20/20.

I wrestle with the same thing when I think I could have done something, anything, to preserve my Jem's life for a while longer. But what is done is done.

And what about those T2s who are of "normal" weight and not obese? What is THEIR excuse for getting diabetes?

nzingha 2011-12-25 05:49:27 -0600 Report

Christmas greetings to you and all our Diabetic partners here on DC this morning..we all know how devastating the Diabeast is.. but look at the brighter side.. its a disease u can control and manage..

so pls dont give up.

I get up in the mornings andifeel weakness and nervousness in my legs, part of my left hand feels numb- the 2 left fingers.. i feel like sometimes i just want to curl up in bed and sometimes when i check my #s its high.. and what did i eat.. God bless the amounts. I eat out of a breakfast plate and I DO NOT take sugars at all..not even sweeteners.. and still I rise.. but it does not stop me?.

My son bought me a cute puppy for xmas and he's become a great distraction for me from my diabetes.. seek the good things around u and concentrate on them. Me.. I also do Face book for fun.. nice to be seeing into other people's lives…its fun, especially their albums and i'm not afraid to add my comments! try it if u r not already on..

nzingha 2011-12-25 05:49:39 -0600 Report

Christmas greetings to you and all our Diabetic partners here on DC this morning..we all know how devastating the Diabeast is.. but look at the brighter side.. its a disease u can control and manage..

so pls dont give up.

I get up in the mornings andifeel weakness and nervousness in my legs, part of my left hand feels numb- the 2 left fingers.. i feel like sometimes i just want to curl up in bed and sometimes when i check my #s its high.. and what did i eat.. God bless the amounts. I eat out of a breakfast plate and I DO NOT take sugars at all..not even sweeteners.. and still I rise.. but it does not stop me?.

My son bought me a cute puppy for xmas and he's become a great distraction for me from my diabetes.. seek the good things around u and concentrate on them. Me.. I also do Face book for fun.. nice to be seeing into other people's lives…its fun, especially their albums and i'm not afraid to add my comments! try it if u r not already on..

2011-12-25 12:12:49 -0600 Report

I'm on Face book. And believe it or not I just reconnected w/an old boyfriend from high school. Go figure. But w/the diabeast it has already cost me my pancreas, as well as some of my eyesight. But what are you gonna do? You live w/it, and you go along w/what life has planned for you.

Charles Albert
Charles Albert 2011-07-07 06:10:30 -0500 Report

I didn't know I had diabetes until I was 55 years old. My whole family has a weight problem. If I can control my weight, I can throw my medication away. It works. I
just came out of the hospital (six months ago), and lost twenty pounds because
it is impossible to cheat after six p.m. The most they will give you is a glass of fruit
juice (great being a diabetic), and a graham cracker package. Fifty five before I
knew. My whole (italian) family likes to eat pasta…Can you blame me?????

CaliKo 2011-07-06 16:40:19 -0500 Report

I wish, even without diabetes, that I had realized at a young age just how much good exercise does for one's health.

JoleneAL 2011-07-06 15:44:19 -0500 Report

I waited a year before going on insulin (Lantus), but for 12 months I fought with nothing more than medication, diet and exercise. I wish I'd gone back after 6 months and said - insulin now and gotten in control earlier.

WendyFR 2011-06-10 23:52:53 -0500 Report

I was 12 when I was diagnosed and around that time I was confused anyway. During the whole pre-teen, diabetes was not what I had in mind. I was angry most of all and very rebellious especially finding out that I had a disease. I don't think at that time I would of listened to anyone…LOL. So the experience over time has helped me get my life together. Of course along the way, I wish someone would of told me about the insulin pump sooner or the benefits of it. I didn't really find out until I turned 36 and I am 37 going on 38.

T.J. Purdy
T.J. Purdy 2011-05-30 08:30:44 -0500 Report

I agree with you. But you got to think that life is a journey that you must run. Life is full of choices that you have to make. And believe me I have made alot of bad choices. But you learn to try tpo correct them or move on. Life is too short to try to correct everything. I take life one day at a time. I enjoy getting outside and working in my gardens or just building something. The way I see it is that God has given me this day and I should be outside and enjoy it.

Starry20 2011-05-31 17:11:34 -0500 Report

I was four so I was sorta confused instead of jumping up in the morning eating and going to play, I had to get my finger 'stabbed' as I thought they were doing.. I wish it would've waited though… It sorta ruined my grip on childhood, now I have a brutal grip on reality, something my friends don't understand so I try to be the optimistic, loving, outgoing class clown, but I'm still very aware of the bruises from shots, the stares and whispers I get when checking can't wait and I have to do it in public, I forget alot, but the looks is something unforgettable, I try not to let it get to me but I cab still see things Like that at night… I don't get mad but it's hard to not get sad, luckily, ive got some killer friends, they stick up for me when I can't…

Trudie Ann
Trudie Ann 2011-05-27 01:27:11 -0500 Report

I had never known anyone that had diabetes, or even heard of it. I didn't know anything about it. None of my family or friends, nobody. I was a total babe in the woods and didn't know what to do.
After my Dr. gave me a bs tester and a prescription he sent me to Diabetic Dieticion, and she helped me learn how to change my diet ect.
I wish I had known about DC. then.
Diabetic Connection has really, really. really helped me a lot.

Nyxks 2011-05-26 13:21:53 -0500 Report

When I was told I was diabetic it didn't surprise me at all I saw it coming thanks to family history and having PCOS. I do wish I'd been more open about insulin from the start might have saved myself some issues after I was forced on it, but its in the past I just have now to worry about, tomorrow will take care of itself.

Diaschm 2011-07-06 14:34:57 -0500 Report

How is insulin helping you? I am resisting it so far. I am on a new drug called tradjenta and on glipizide. My scores have been better on these but I no doc would rather I be on insulin.

tabby9146 2011-05-26 12:16:51 -0500 Report

I wish I had known that it runs in my birth father's family. I know for sure if I'd have known that, sooner I would have taken the necessary steps like I did after diagnosis.

Chad1978 2011-05-25 19:47:46 -0500 Report

Well, I am 33, and was diagnosed with type 1 at 29, so I not sure I am really qualified to answer this question just yet, but I will anyways. Honestly, not much has changed for me since I got everything under control. I have always had a positive outlook before my diagnosis and especially after the diagnosis. I have not even had one down and out whoa is me day, but I see others that do. I'm kind of lucky in that I was raised by positive people all my life including my grandfather who was dying of cancer and was joking constantly until the day he died. I just find life amusing I guess. I love life, and don't even see diabetes as a bump in the road. I look at it like it could have been worse. I could have been diagnosed with something so horrible that I may not survive. I wasn't, though, I was diagnosed at 29 with diabetes. I read about young children dying of cancer and other horrible diseases, and that makes me sad, but for me staying positive makes this that much easier. I do have a very good supporting cast from my friends, family, co-workers, and of course my doctors. I suppose I am pretty lucky, because when I found out I had type 1 diabetes the true motivation was that I wanted to see my little boys grow up and have families of their own. My family is and will always be my motivation even if things are harder to control.

I will, and have always done the best I could possibly do from the day I was diagnosed to the present day, so I guess the thing I have learned the most is to stay positive and live for today, and not worry about tomorrow. Tomorrow is guaranteed for no one whether you have a disease or not, so today should always be the day to enjoy, but doing everything possible to make sure that I can see as many todays that I possibly can.

Your fellow diabetic, and rambler,

2011-12-24 16:40:24 -0600 Report

Hey Chad~ any one who has this awful disease can answer. T1,T2, if you were diagnosed as early as 3 days ago,or diagnosed a lifetime ago, your allowed to answer. Cause every1 who's on this site, are in the same boat. Yet no1 has the paddles to row to shore. We're all out on the same damn ocean. With no answers to the same questions. It's 1 big circle.

Chad1978 2011-12-25 07:37:45 -0600 Report

Absolutely anyone can answer this, and really not even just diabetics. I'm sure that this site has non-diabetics that may have family members, spouses, or friends with the disease, so yep anyone can answer.

Gimpalong 2011-05-25 19:59:43 -0500 Report

I really like your reply. I think that it is important too, to stay as positive as possible. Too, I figure that I have enough on my platter for one day, let a lone trying to live for the future. I'm glad that you have a great support group, because it does make a difference. Take care and have a wonderful Memorial Day weekend.
Lots of hugs and prayers,

Chad1978 2011-05-25 21:00:57 -0500 Report

I feel that when one person is consistently positive then those around him/her will be motivated to be positive, as well.

I hope you, also, have a great Memorial Day weekend. Be safe, have fun, and enjoy.

live, love, and laugh,

nanaellen 2011-05-25 15:28:03 -0500 Report

I wish I had Insurance to BE educated…I wish I had (as ODD as this is gonna sound) Worked less and ATE more!! Working as a Cook (of all things) lol … I worked way to many hours a day and ate ONE meal a day for most of my adult life…I wish when I FIRST found out 6 years ago someone had even MENTIONED carbs!!! All anyone told me was no sugar…no sugar…wish I had known about smaller needles…wish I had taken it more seriously when I did find out!! And I totally agree about the trial and error THAT'S what I've dealt with for 6 years!! At least until I found you all!!! LOL Ellen :)

Graylin Bee
Graylin Bee 2011-05-25 10:01:18 -0500 Report

I'm still in my early days of knowing I am dealing with diabetes, just about a year and a half. I wish I had known more from day 1. However I knew a whole lot more than I knew about 1 or 2 other problems that hit me that resulted in the Drs. taking a look at my BG. Venous insuffuciency, venous reflux) mixed with MRSA almost took my legs and/or my life. Don't want diabetes to put me through that terror again. So overall I have been taking it pretty darn serious and learning as much as I can as fast as I can. The main thing I wish had known the first few months was I didn't have to eat as many carbs per meal as the dietician said I was allowed to have. 3-4 carb servings per meal is way more than my body can process properly at one time. My BG levels might have come down sooner.

PetiePal 2011-05-25 08:23:37 -0500 Report

1. I wish I knew I didn't have to start the lancer at level 9. No wonder it hurt and I felt scared of testing my finger for like 3 months lol.

2. Ultra-fine lancets, OneTouch Delica. Most amazing things ever.

3. I wish I had toned down the sugar intake and been more active the last 5 years. After college I got kinda lazy. I would go to work, come home, play games, eat and nap too often. Had I toned down some of this stuff I likely would have not been pre-diabetic or been able to turn it around.

SCLWKR 2011-12-24 16:07:04 -0600 Report

I do a 4 and squeeze the blood up.

2011-12-24 16:49:18 -0600 Report

U & I SCLWKR R on the same number. I only go higher when I need 2 change my lancet.

SCLWKR 2011-12-24 16:53:10 -0600 Report

I have gotten in the habit of changing the lancet once a day. No time to do it with every test as is recommended. I could still rob a bank and they would never catch me cuz my fingerprints are all full of holes!

Young1s 2011-12-26 09:36:48 -0600 Report

Oh man! Don't hate me cause I'm stupid. You just reminded me that I haven't changed my lancet in a week. I have been so busy that I was just testing and then going about my days. You'd think changing my insulin needles or opening a new alcohol wipe would have set off some kind of bell in my head. Wow. I can't beleive that I did that.

2011-12-24 17:19:35 -0600 Report

Mine too!! Although even though it's only a tiny amt of blood, it's hard for me to stop the bleeding, so the cops would have my DNA for sure!! lol :D

Graylin Bee
Graylin Bee 2011-05-25 10:04:05 -0500 Report

Every so often I forget to double check the depth level on my lancer, only to be reminded the painful way.

2011-12-24 17:21:47 -0600 Report

GB that's how I find out that it's time to change the old lancet!!

marla50 2011-05-24 23:29:46 -0500 Report

I was only six when I found out. I wish I had listened to what I was told. I never thought I would get complications. Or maybe I would get one. I really thought I would be dead by now. Instead I have every complication they ever told me about and then some. I'm not blind but that's only because of new treatments.

nanaellen 2011-05-25 15:30:04 -0500 Report

So sorry to hear,but I'm right there with ya!

marla50 2011-05-25 19:02:56 -0500 Report

Diabetes is a deadly disease. There should be more awareness of how it sneaks up to you. I know better control can slow it down,but who wants to live like that. But if you don't someday you'll pay. One of my instructures said it's becoming an epidemic. Sorry to hear about you.

medic673b 2011-10-17 16:00:08 -0500 Report

i am already about as depressed as one can get then you come long and remind me that i have a deadly disease. when i mention this to people who supposedly care about me they tell me i am crazy and that so and so lived to be 80 and they had diabetes so what i am not them who says will live to be able to see my daughter graduate high school

jayabee52 2011-10-18 05:36:19 -0500 Report

Howdy Michael
I would add that it CAN be deadly IF it is not managed well. There is NOTHING which which says that you cannot live a long and relatively healthy life if you manage it.

I know about depression. I had been depressed off and on for most of my life. When my kidneys had quit working and I had to go on dialysis I was REALLY depressed enough to talk to the social worker about not coming back for treatments and just letting the disease take me. After, all I thought I was a dead man walking. I had NO future. I had just been divorced and no self-respecting woman would want a dialysis patient with diabetes.

She (soc. worker) said she I had a point and that nobody would blame me if I did that. I decided not to do that as I didn't want to give my sons a bad example to follow when life got tough. I continued, and my kidneys healed enough that I was able to come off dialysis after 10 months of treatment. It would have been terrible had used a "final solution" for what turned out to be a temporary problem.

And then something else happened. 1 year after my dialysis ordeal began a lady contacted me online. She was an extra special lady who had a lot of medical challenges herself. We grew closer and fell in love and we married. She was very special. I would have missed her love had I let my depression lead me into ending my life. She was really good for me in so many different ways that words fail to express it. She was more to me in the 3 years I knew her (she passed in July 2010) than my ex, the mother of my sons, was to me in the 25 years we were married. All I can say is that because of her love I am a changed man. I had been depressed but now, even though I have lost her out of my day to day life, I am not depressed.

So ONLY if a person with diabetes does not manage and control the diabetes can it be deadly. IF you take care to manage your condition, you can live a relatively long and healthy life even with diabetes.

Praying the best for you and yours, Michael


2011-12-24 16:53:30 -0600 Report

Yeah but James, I do manage it well, so let it just take me away as a whole person, instead of pc. by pc. It took my pancreas, & I've been on Metformin for so damn long, that I wouldn't be a bit surprise if my kidneys went the same way.

f_red21 2011-05-24 15:35:01 -0500 Report

I have a bottle of (shall we say cheap)brandy in my cupboard,I wish I could just sit back & sip on a little sniffter but I'm reduced to just putting it cakes(sugarfree of course)cheesecakes(sugarfree also)rubbing some on my toes,put a little on my nose,oh wait,anyway there are a lot of things I wish I had done different but as the old saying goes"You can't live in the past""Just look forward to the future

I made some of that up,hee,hee.".

Somoca 2011-05-24 15:21:45 -0500 Report

I wish i had known back then the legal rights that diabetics have under the disability act. Employers will push you as far as you allow them to when you do not know any better.

Shamia_Swanks 2011-05-24 22:37:09 -0500 Report

what are some of the legal rights diabetics have under the disability act?

Somoca 2011-05-25 17:24:31 -0500 Report

well for one a potential employer can't ask you about your diabetes being a problem or tell you that they won't hire you because of it. As long as you are productive and it doesn't cause a problem with your job, they can't give you problems or just fire you out of the blue because of it.

There are alot of things that my doctor or nutritionist didn't tell me that the workforce won't tell you either; you have to check out the ADA website and school yourself. Knowledge is power.

nanaellen 2011-05-25 15:37:24 -0500 Report

Do you mean collecting disability?? I just saw a lawyer yesterday and I'm assuming the laws may be different from state to state but here there are 2 main stipulations first you have to have a Dr.'s note stating that you will be disabled for at least 12 months and I believe you have to be 50 years old. I can't get it because I usually see E.R. Dr.'s and they "don't know you well enough " to committ to that. Hope that helps somewhat. You can always call the S.S. Office and ask them to send you the info you may need! Ellen

roshy 2011-05-24 14:03:03 -0500 Report

i am constantly reflecting over my condition over the past 7 years and i wish i could take some of the damaging behavour back and the negative attitude. I wish i opened up more to others and accepted the help that was offered. I wish i could of been a bit stronger and committed to my health. I wish i exercized more and ate less! I wish i accepted the changes when everything changed and perhapes even asked for help ! I suppose these mistakes have to be made in order that we learn from them and move on!

I wish i saw insulin shots rather as a support and a gift then a hassle !! Theres so many things i would have liked to change but control is all a proccess and making these errors is all part of it!