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Richard157

Feeling Guilty about Feeling Guilty

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Richard157

For many years now I have been thinking about the past and the fact I knew so little about my T1 diabetes. My doctors did not know much either. There were no T1Ds that I knew back then, in fact there were no types when I was diagnosed in 1945. Types were identified years later. I lived in a rural area in south central Virginia for my first 23 years. Given those circumstances, maybe I should not feel guilty about my ignorance, however, I now realize that there were parts of the country where many newly diagnosed diabetics had very good doctors who knew so much about diabetes. I have seen many fellow medalists post that they were patients of Dr Joslin in the Boston area. Dr Joslin specialized in T1, and he even wrote a book about T1 in the years 1900-1950. That book can still be read online...very interesting. If I had read that book in my younger years, I would have had much more stable control. Some medalists have written about knowing about carbs, and weighing their food. I never heard about carbs and their effect on T1 control until the lats 1980s.

 

Many days I feel guilty that I knew so little for so many years. Why? Well, I was in college 1957-63 and there were libraries where I could have researched T1D. Maybe Dr Joslin's book was there? I might have visited larger cities in Virginia and searched for a doctor who was more knowledgeable about my diabetes. I did visit a doctor in Richmond in 1970. He was the one who told me my life expectancy would have me die before I was 40. I was 31 at the time. HA! I hate doctors who use scare tactics!!!

 

My management in the 1945-1995 years left a lot to be desired, and I cannot help but feel guilty about that. There were things I could have done to learn more, but ignorance prevailed, anf I did nothing. Well, I avoided sugar, and that was the only advice my doctors gave me during my early years. I ate tons of food, all kinds, but avoided sugar. I thought I was doing everything appropriate to avoid complications.

 

I joined online diabetes support groups starting in 2006. There were some T1Ds who had been on diabetes message boards as far back as the mid 1990s. Why didn't I know about them? More guilt. Some of my long term online friends have known about carbs and carb counting many years before I did. Their diabetes management was so much better than mine until the current century. More guilt. I felt so grateful to find so much wonderful information online and I have had much better control.

 

More recently I have forgiven myself for these feelings. I have been a T1D for 68 years, and the only diabetes related complication I have is some mild nerve damage. Even if I knew all the things I know now during my early years, I might not be any healthier. It is time I stop feeling guilty. Sometimes I feel guilty for having felt guilty in the past, but that is a forgivable kind of guilt. :)

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Phoenix

richard, you have my utmost respect for living with diabetes for 68 years. you get kudos for keeping the damage mild. yet more kudos for getting on the computer when you did! there are plenty of people who are resistant to anything new - including this new-fangled internet-thing.

 

i'm a fine one to talk here, because i hang on to things longer than i should... but that's me, and we're talking about you! lay down the guilt, my friend. you don't need to carry it any further. not even the guilty feeling for feeling guilty. shed it all... you got here and that's the important part.

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Jan B

Richard,

 

I don't think "back then" people questioned the medical establishment and their doctors as much as we do now. Honestly, you shouldn't feel guilty at all. You should feel very proud of the way you took action and helped yourself every time you learned something new. Besides that, you were a math professor, right? Not a medical researcher! If anyone should feel guilty, it would be those who knew better and didn't take action to do their best! I hate guilt in general. And I hate that you feel any. Don't!! Give yourself a giant hug, you wonderful teacher, helper and beautiful man!!!

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pat593

Wow. Awesome story. The fact that you are in good health means you must have done something right! Would love to know more about what you were told 68 years ago! Nice A1C.

 

I wish all drs would embrace the internet and suggest that people learn as much as they can. They seem to discourage forums and do not see the benefit in their patients learning from other patients the so called tricks of the trade.

 

By the way, ignorance and misunderstanding of the disease seems to be par for the course. When I was diagnosed with gestational diabetes in 1996, all I was told was to avoid sugar. No mention of carbs. Didn't the medical community know better in 1996?

 

Talk about guilt, I was told that I was probably a gestational diabetic for my pregnancy in 1994 and my unhealthy eating habits and weight gain during pregnancy may have contributed to the brain damaged birth of my baby.

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Cora

Richard, you should (absolutely) not feel guilty. You have always done the best you could. In a way I think you were lucky in that you were not forced, like some of us, to look for more answers. I started early, doing tons of research, due to eye and kidney problems. I actually had pretty good control, but I was one of the lucky ones too. Not Joslin, but Dr. Belmonte from the Montreal Children's Hospital who later won the Order of Canada.

 

I may be stretching a bit, but it almost sounds like a bit of "survivors" guilt. I think that what you should do is to honor your gift of health by continuing to be what you are. An informed leader to the DOC. An inspiration to younger generations of Ds who have no role models. A kind presence and a calming voice. You do all of that with excellence.

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samuraiguy

Your mere survival so long with type 1 and still be relatively healthy is a reason to celebrate, not feel guilty. I should feel guilty because my dad had type 2 and died of cancer made more aggressive by his poor control of it and yet I did nothing to keep myself from getting it. I believe in only focusing on what I can control in life and since I can no longer control getting diabetes, there is no sense in playing; "woulda, shoulda, coulda". My focus is on controlling my diabetes and helping other diabetics so they hopefully don't have to go through what my dad did.

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Richard157

Thanks to my friends for your replies! I have not felt the guilt for several years. I am just enjoying my retirement in peace and quiet. The burden of guilt is gone.

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Bountyman
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Richard, with all due respect, I wish you'd move on and stop with your constant "I-have-been-a-T1D-for-68-years" posts. You wear it like a badge...but in all the posts here that question diabetes...you never add much. Once in awhile you'll post threads like this...but in all honesty...they help no one. We're all glad you've survived...but personally, I'd like to see that "survival criteria" applied to each and every T1 post here looking for guidance. Laying out your laurels helps no one.

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Jan B

Considering that there aren't a lot of T1s around who have lived for 68 years after diagnosis, I'd say Richard is helpful to a lot of frightened, more recently diagnosed T1s. It's a better badge of honor to wear than some other flaunted badges I've seen around here.

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Caravaggio

We all contribute in different ways. One way is simply being there long enough to give hope to others that they can also make it, with very few obvious complications. I don't always need opinions, advice, information. Although I'm type 2, not type 1, I appreciate the fact that Richard gives me hope that, hey, I'll also get that far. Sometimes that is all I need.

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Lizzie G

i think richards story just provides so much hope to so many; for so many years he didnt really understand his condition (because so few did back then) and was lucky enough that these many years had so little impact on his excellent health. many people coming to these boards for the first time have had years of less than ideal control for one reason or another and it brings hope and inspiration that they too can get better informed and live long healthy lives. and to anyone receiving a diagnosis of type 1 diagnosis, just reading about someone like richard can help alleviate the immense fear that you are confronted with.

 

in fact, everybodys story here, helps everybody. whilst we may have different opinions and ideas in relation to our diabetes, we all learn by sharing, sometimes we learn about diabetes, sometimes about managing the emotional impact of diabetes (never to be underestimated), and sometimes its more about friendship and kindness.

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control
i think richards story just provides so much hope to so many; [...] in fact, everybodys story here, helps everybody.

I have always been unconvinced that people's stories about, well, anything have the ability to provide "hope" (whatever that means) or produce any long term changes in anybody. If it is not in a person to be self-motivated to change because a change in warranted, then no amount of stories, anecdotes or sayings will have any real effect. Sure, a person may get motivated for a day or a week, but changes that are based on what other people accomplish will be fleeting at best. That's why new year's resolutions never last, people post about how they went off their diets and people have excuses for why they cannot accomplish a thing (whatever that thing may be).

 

Stories don't provide results. Actions do. If people have it in them to act to cause change, they don't need stories.

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Bountyman
I have always been unconvinced that people's stories about, well, anything have the ability to provide "hope" (whatever that means) or produce any long term changes in anybody.

 

I agree. That Richard has been a diabetic for 68 years holds no hope for me. Richard is Richard. It's like Chevy Chase used to say, "I'm Chevy Chase...and you're not!" I don't believe Richard to be an average Type 1 nor the exception. I believe Richard to be...Richard.

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ant hill

Well there's only One BountyMan who is himself and just be happy with folk who has this teasing disease that we all have. Having to write about this disease give's people in the bisness of of Endocrinology to try and decipher why is this so???

As this site in the internet as we share different experience with this disease makes us stronger and with Richards involvement makes the whole trip about Diabetes easier and get on with life. That's is what we all want, Do we?

 

Low carbing is a lifestyle that some feel comfortable with, Then add Insulin Just makes it more of a daily puzzle in our lives.

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Richard157

Bountyman, I am a member and mod on a Facebook diabetes support group. The administrator there is an endo in the Boston area. I let the members know of your criticism of my way of posting here in DF. Here is the endo's reply:

 

"One way of achieving success yourself is to model somebody who has been successful. Some people resent people who do well and these feeling will hamper their possibility of achieving success. In my book, I analyzed the personal characteristics of people who had diabetes and created a successful life. If I had known you when I initially wrote my book I would have highlighted you. In addition, you have learned so much about Diabetes, and share your knowledge enhancing our website greatly. Keep posting and motivating and educating others."

 

You will probably have something very negative to say about this, that is what I expect from you. You are the first person ever to say anything negative about my posts in any diabetes support group. I do not usually give advice here because there are many T1D's who already do so. There are Facebook groups that have few, if any, experienced TiD's. That is where I give advice, and that is where I belong. I'm sorry if I have disappointed you.

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Bountyman
You will probably have something very negative to say about this, that is what I expect from you.

 

Not just negative, but very negative? Why Richard, you make me blush. To be honest, I'm not sure where negative stops and very negative takes over. I'm also trying to wrap my head around this "...that is what I expect from you" thing. I don't understand that. Have I said something negative about you before? Am I negative in general...because I got about 4000+ Likes over in that profile thing. Somebody must agree with me.

 

You are the first person ever to say anything negative about my posts in any diabetes support group.

 

Not my first first...but I'll take it.

 

I'm sorry if I have disappointed you.

 

I'm sorry that you think that I think you've disappointed me. :)

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Lizzie G
I have always been unconvinced that people's stories about, well, anything have the ability to provide "hope" (whatever that means) or produce any long term changes in anybody. If it is not in a person to be self-motivated to change because a change in warranted, then no amount of stories, anecdotes or sayings will have any real effect. Sure, a person may get motivated for a day or a week, but changes that are based on what other people accomplish will be fleeting at best. That's why new year's resolutions never last, people post about how they went off their diets and people have excuses for why they cannot accomplish a thing (whatever that thing may be).

 

Stories don't provide results. Actions do. If people have it in them to act to cause change, they don't need stories.

 

im not suggesting that anything other than action and hard work is what creates results; i am just saying that being diagnosed with type 1 is terrifying, the easiest information to come by is the poor statistics about life expectancy, carrying a child, and remembering back to the diabetic at school who was always sick and being blue lighted in an ambulance to hospital. as a young person it is frightening to confront the idea of ones own mortality in that way for the first time, and before you understand that the outcomes are within your control, it is a comfort to hear a positive story.

 

sometimes people in a negative mind set DO need a bit of reassurance and catalyst for change. you only need to see the number of threads about terrified unplanned type 1 pregnancies, women wracked with guilt and fear, looking for someone to tell them that it can all be ok, and asking desperately for help, to see that [and my stock response is you are where you are, leave behind the guilt and work work work from here].

 

not everybody can be strong all of the time and many derive hope from different sources; you only need to look at how many people feel they need some kind of god figure in their lives to believe they are good people.

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gettingby

Ricahrd, I learn from your stories. You continue to post what you post. Don't let anyone bring you down. You provide hope (at least to me).

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Java

WOW, just WOW!!

 

 

 

richard, you owe *no one* here an apology! you post your posts and ignore the mean comments. people don't like em, they don't have to read em. (((hugs)))

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Richard157

Cin, I love your message, thanks. I also love the way you spelled my name. lol

 

javagurrl, thanks so much!! You gave very good advice.

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DanG
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I am sorry to see that the original Bountyman comment has been deleted.

 

When I read the comment a couple days ago, I agreed with what Bountyman said and I am really disappointed that the majority of comments seem to thing the original Bountyman comment was unwarranted.

 

The original Bountyman comment was a legitimate request for information, rather than a denigration of an individual. This insulin-gig needs work from each of us and we need information about what to do. The protocol of management pursued by Richard is no longer available, so the turf is all new and really confusing. Sure, some of us that used to use insulin derived from dead animals complained about the routine, but it was the routine of life - get down, do it, live with it - we all die soon enough. As I have read this forum over the 8 years that my life has been managed using the analog basal/bolus insulin I see many insulin-gig complaints that rue the day they were diagnosed. Me? - it was like a skinned knee a month before I got married. Life goes on. I buried myself in life, did the insulin derived from dead animals, and here I am. Years ago I recall hearing mention of limited life expectancy and loss of physical functions, but... that is the life given, get down, do it, live with it, complaint was not in the cards to consider.

 

What the original Bountyman comment should be spawning is a new thread about *how* and *what* of doing insulin these days. While I might not have been as bold as Bountyman in his original comment, I read that comment as a request for more information and details as to how to make it happen for any one of us over the next 68 years. The next 68 years? - I say, yeah, right!! - that ain't gonna happen. The purpose of insulin development has changed, I posit. Insulin development used to be a function of human need. Now it seems to be human need is the driver for better cash flow. Do we suppose Dr. Banting became a millionaire? Probably Lilly made millions after they bought the process, but cash flow today dwarfs the cash flow drives of those days, I presume. Conspiracy? - no. But something to realize these days about analog insulin. I like life so I don't complain about analog insulin, but diversity usually lets us posit opinion, state fact, etc.

 

All this chatter to say this - there were things in insulin derived from dead animals that is not in the analog insulin today. That is a consideration on 68 years. Also, up until 25 years ago the manner in which we knew blood sugar was different. Today we focus on numbers as we read the meter and CGM. Cost is many multiples greater today for insulin-gig stuff than it was years ago. Diabetes is quietly becoming the new discrimination since we are sooo costly to manage, being almost as expensive in total life costs as cancer - this was not true 25 years ago. Eating and exercise are also huge considerations. No person should eat processed food, yet the majority of the market is wrapped in plastic, meaning it is processed. That is not food. Food comes from dead animals. Food comes from the ground. People eating food like Richard did 68 years ago in rural VA lived without much concern because food and energy use was normal for everybody.

 

Method? - On and on, Bountyman - lots of things will make sure you don't make it another 68 years. Age gives, and age takes. My taking and your taking are closer than we might want, but guaranteed.

 

Time for new thread?

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LauraSmith29
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You are an inspiration! All is well in the end. Continue to spread the knowledge you have learn to others who don't have a access to online information.

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LauraSmith29
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You have been an inspiration for me.I am feeling what you have already experienced in your life and we can learn about it early because you have the courage to share your shortcomings.I hope that you continue to grow and learn as a student of life.

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