This is the letter called “the truth about diabetes.” Mainly for the new diabetics and some who don’t think they have to care about diabetes.
The basic truth in this letter cannot be change.
I know there are some who think that I try to scare straight, those diabetics who need it. I wished that I had received this letter 50 years ago, I would be better off today. It is true that there are long time diabetics who are lucky enough to not have big problems healthwise, however there are certainly many more I have seen with big problems they could have avoided with better caring for themselves. Because for the first 20 years I had diabetes type-1, we had no monitors to measure our blood glucose, and I got very many deep yellow urine test strips telling me what did happen 3-4 hours before. The yellow indicated 4+ being the highest sugar content showing. Blue was good.
Yes I know today with the pump, life MAY BE A BIT EASIER, but the basics remain the same. There will be people who pay no attention to this. Your bad luck! If you want the truth about diabetes read this .
I post this letter from time to time because it seems to help a lot of newbies and not so newbies to live better with diabetes. Hope you think so also. . I have 50 years of diabetes at 5 needles per day and 10 blood tests daily and have some nice complications.
Some friendly advice for those who want it!
This is for those starting or on the go with diabetes and not sticking to the rules! You may not feel anything now but it sure as h*ll will get you later. Diabetes will give you time to live, under what circumstances, is up to how you, control your diabetes right FROM THE START!! A good life can be had, having diabetes!!!
That is really true, it is an opportunity that will give you a good diet to live by, preventing to be overweight and because you are forced to do your exercise you will remain slim or slimmer than you would be, if you carried on the old way.
There are some “IF’s” attached to this. Nothing comes without effort. You will ALWAYS have to stick to your diet, you will ALWAYS have to take your medication at THE SAME TIME, you will ALWAYS have to do your exercise, you will ALWAYS have to test your BLOODSUGAR so that you know you stay as much as possible where you want to be. Keep complete records of your testing. Sinning sometimes is ok as long as it is not on a regular basis. On the pump you will have more flexibility
Now here is something you don’t want to hear! No matter how well you stick to the rules you will run into regular disappointments, to the point that you may want to pull the hair out of your head, because good adherence to the rules doesn’t ALWAYS results into good control of your diabetes.
On the other hand, if you decide NOT to follow the rules you will run into complications of diabetes that could shorten your life. It could blind you, kidney failure will make you have to experience dialysis, you could lose toes, feet and yes even legs! I could go on and on , but won’t. To come to an end here,… if you stick to the rules, your life can be a pleasant experience in spite of disappointments, and you will avoid all or most of the complications. Let me hasten to say, that this doesn’t mean that you will be the unlucky one but you be amazed how much more lucky you will be with taking care of yourself.
See it as an opportunity for healthy living, and discipline in your everyday life. A big chance to live longer and better than you would possibly have had without it! I took extreme care of my diabetes when the monitors came in and will turn 80 years old next Feb. 27. Started this diabetes in 1960. Like I said somewhere I want to be the first 100 year old diabetic God willing! Give me a hand Lord! Thank you! LOL.
I still have my sudden set backs but I know there are better days also! Diabetes is very tricky, believe me!
Your dietitian will help you with what to eat and how much probably with counting yourcarbs. 50 Years ago we had to learn by estimating and making a good guess what has much sugar in it and that way I do my eating still today. Don’t panic!!! It all will come allright soon. On this board you can ask everything and learn fast. Basically it is more a matter of amounts that matters. Smaller amounts and avoid obvious sugary things, but bread and potatoes are also slower sugary things so SMALL AMOUNTS!
The very best to you from, 1-2010
JohnBen. PS. If you have read this, will you please say so in the reply, so that I know I did help some people with this? Thank you.
This is the letter called “the truth about diabetes.” Mainly for the new diabetics and some who don’t think they have to care about diabetes.
Thank you for reminding me that diabetes can be silent for a long time before the damage is felt. I’ve lived a non diabetic life for so long that suddenlyt being a Type 1 is a big adjustment.
What an excellent letter–so many people need this, JohnBen. Thank you for posting it.
I’ve been diabetic for nearly 24 years (my anniversary is next month) and have had very few problems due in large part to vigilance. I would encourage all of you, when you’re sick of it, when you don’t feel like it, when you’re angry beyond belief that this disease has anything to do with you–take care of yourself anyway. Do it anyway. Do it.
It is worth it.
Hi Jonben, I read your letter with interest. I have had Diabetes for almost 20 years and my eyes are starting to show the signs . I am trying to do it right now. I hope I can keep my sight. Thanks for a sincere letter . Lisa
I wish I had heeded this advice years ago. I have had Type 1 for 20 years and am now on dialysis. Never think it can’t happen to you!
As I am only a few days into this, I am glad to read your letter.
Here is another perspective from a T1D with 40 year at the end of the needle. Diabetes makes you susceptible to complications base on many more factors that just high BG. You make some good points; however, your diatribe is a very narrow perspective on what it takes to be successful with managing this D challenge. I have see the test tube turn blue, orange and yellow, I started BG testing with chemstrips and syringes, I went to MDI in the early 80 against what the MD recommended, I went to the pump then I added the DGM. Managing diabetes is still a challenge, but the information, technology and support are there to help make it easier than ever before and enabling you to successful.
I have spent much of the time used to manage my D educating myself about D, the options, the technology, the future, the past, the experience, what works for me, failure and successes, flexibility, lifestyle options, and sociology of being a D in today’s society. And, while doing this, I have focus on controlling my D instead of it controlling me.
Any new D should learn and understand their diabetes before submitting the philosophy that it will control their life.
JohnBen, it is a great goal to get to 100 and I am rooting for you all the way! You have been very successful to date in your own way. I hope to be there on the list beside you in my own way when I hit the century mark.
T1D brings many challenges, successes, failures and heartbreak along the adventure. Anyone should be very proud to be faced with such a big challenge from day to day and beating it in your own way and still being yourself.
For the newbies, it can kill you, sometimes a little at time, but if you learn about it and learn to manage it successfully, you can keep the fears and complications at bay.
JohnBen said clearly, if you don’t, it may catch up to you and then you will wish you had controlled it. Learn about D, experiment with D, listen to your D, respect D, have a little fun with D and be yourself!
Thank you all for your replies.
I like to ask S Woodward about the use of the word “diatribe”. My dictionary tells me that it means “bitter critical attack.” Another says “an abusive discourse, denunciation, invective!” Are you sure you know what you were saying? The rest of your reply is very interesting. Of course I cannot cover anything and all that I learned in my 50 years, but does that make it a very narrow perspective?
I’m asking you all this because your reply is much in favor of all I’m saying here. I like to make clear statements without beating around the bush. I take it that you didn’t mean to attack me really because if I thought that way, I wouldn’t even answer you like this. Indeed, I hope very much that you will be there right next to me being a diabetic at age 100. It can be soooo lonely at the top they tell me…LOL.
Thank you for the informative and crucial post JohnBen. I Love your sense of humour also.
Thanks JohnBen for lovely letter. I am quite new to type 1 only 4 years but am trying to be vigilant. I will pass your letter on to my niece who is only 27 and has had the D for 12 years but does not look after herself. Maybe it will waken her up.
Thank you JohnBen. You make very important points, and they are things we all need to revisit as we go on this D journey. I have had T1 for 20 years, dx at age 28, and have spent a lot of years being the “perfect diabetic” when it was most important (when I was pregnant), but set myself up for years of “failure” as I later denied the importance of monitoring, and just doing the bare minimum, and coasting.
Both the states of perfection and failures are dangerous states of mind. The image of perfection sets us up to fall, and when we fall, it easily transforms into failure. Once failure sets in, it can easily then becomes self fulfilling. I can only speak for myself, and not others of course. Over the past couple of years especially, I have really started to take hold of my situation, and have been taking the overwhelming big task of management, and have taken smaller steps to succeed. If we look at all things we have to do to get through the day, it is easy to become overwhelmed.
You are right to point out the importance of being diligent, but you also make an important observation, that D is tricky. I think it is equally important for us all to be able to have the mental capacity to hit whatever is pitched to us as we go, and not allow ourselves to become overwhelmed by what we are doing, and what we are dealing with on a daily basis. There is room for the learning curve, and if we break it into manageable chunks, we can, in turn, manage diabetes. We should understand that we cannot control diabetes, however, using small steps, we can learn to manage it, and roll with it.
Your right there! Wish I had this knowledge back 36 years ago! Also wish I had listened to the ppl who tried to tell me the samething a little later!
Jamie, I like what you are saying. People becoming frustrated when they cannot control diabetes are barking up the wrong tree.
Of course you never stop trying. Don’t be amazed when trying to control diabetes it seems to laugh at you and teach you the next day that what you did the days before when things went SO well, won’t work today.
As long you NEVER give up. Just say, “well here we go again!” Have some fun with it, things will go better and on average you will win more times then you lose. That result will keep you as much as possible from getting to the complications. Some people are lucky and get away with very little or none of complication. Often they think that we should watch out more to do things right. Often they are right. But I wonder, can they understand when troubles come our way, what it really feels like? Some people’s genes protect them more than others. Not all of us are so lucky!
With a medial research background, this is what I said to my mother when she was diagnosed with diabetes 25 years ago:
“What you get with diabetes, is what you would have got any way with old age any way. Diabetes just brings it forward! Earlier, much, much earlier, alot earlier.” So I advised her to keep her blood glucose as low as possible to avoid anything coming earlier. Alot, alot earlier!" I think this advice (I gave her 25 years ago) was spot on.
So I think I’m on the same page as Johnben
PS My mother has never looked back.
S Woodward , I am also struggling with the meaning and your sentence about diatribe etc. etc. etc. ???
I think , that JB has proven a very long time ago , that he wanted to be successful in handling his diabetes and did with the total support of his partner just do that. Can you please explain . before I continue typing , while I maybe totally of the wall ?..Thanks
And can you imagine the 2 of you poking each others finger for a Bg test … Feb 27 , 2030 ?.
To all, it is is kind of a play on words. MW defines diatribe as a prolonged discourse and not a negative or abusive. Sorry for the miscommunication. In some dictionaries it is even defined as “learned discussion.”
JoBen, I know we could go on forever about the big D and our experiences if we met in person!
By they way, did you get your medal yet? That is one I’m looking for in the years to come.
I was taken back a bit by your comments about the regimen being so tight. That seemed to indicate that you lean toward letting the D control your life. I like to look at it another way, I try and master the D so I can live my life and not have to always do what I need to, but take the opportunity to enjoy the flexibility that has come with the improved technology, drugs and information.
You hit the mark about following what you need to to control D. I would rather use the phrase, “Strive for the goal” instead of “follow the rules”.
Have to say that when I read your post a few weeks ago I found them hard to follow, but now I am beginning to enjoy them…Keep it Up!
I’ll have my cane with a horn beep away :).
Thank you Johnben, I feel very grateful to belong to a new diabetic generation, with all the wonderful technology available, I do believe (and experience) that we can live a healthy and deep life if we learn to learn from our diabetes, it can teach us many things about ourselves, the world and human nature.
It is a tough teacher, but sometimes that is just what we need to wake us up.
Thank you very much.
JohnBen, I came upon this on dLife’s summary of diabetes drug & tech for 2009/10…it sure backs up the reason for dilegence with management of diabetes.
DCCT 30 years diabetes duration analysis: A major study was published in the Archives of Internal Medicine in 2010 confirming that intensive therapy should be standard of care for type 1 patients. This study showed how the intensive control of diabetes dramatically reduced development and progression of complications in those with type 1 diabetes for 30 years after the study. While we know this from DCCT, this follow-up data from DCCT/EDIC and the highly respected Dr. Trevor Orchard’s group at Pittsburgh provide irrefutable evidence. This, we felt, was the most important of all publications for people with diabetes in 2009. The study showed that, almost 30 years out, fewer than 1% of patients who were intensively managed during the study were blind or had amputations, dialysis, or kidney replacement, compared to 4% in conventionally managed patients. Dr. David Nathan, a highly-respected endocrinologist at Mass General and Harvard Medical School and one of the study chairs for DCCT/EDIC, said: “Now in the modern era, knowing how to use insulin more physiologically has led to really dramatically different outcomes.” We believe this report is a major positive for pumps, SMBG, CGM, and centers like Diabetes America and companies like Medco that strive to keep patients in the best possible control by giving them access to the best medical care providers around. Notably, in an audio interview just after the study was released, Dr. Nathan said this research makes it clear that patients should keep their blood glucose levels as close to normal as possible. We are particularly excited about the implications for CGM, which we believe allows patients to have their blood sugars as close to normal as possible, and now there is even more data that could bolster its use. In the interview, Dr. Nathan did specify that these results were for type 1 patients.
I read it. Thank you for posting it. It’s a good reminder to take care of myself, and encouraging that you have carried on for so long. I’m praying for you to reach your 100 year mark, too. Cheers, and blessings on you and yours.