Stories I've been told about D

When I was diagnosed, these are some of the stories I was told about diabetes:

  1. Your grandfather had Type 2. He was diagnosed young (like my cousin and I). He put it down to drinking too much Coke, which he did when he owned a corner shop. He used insulin, and travelled with it in a cooler bag. He always ate a sandwich just before he went to bed.
    WHAT WAS NOT SAID: Your grandfather died from a stroke and jaundice. The doctors thought it was all related to his diabetes. You shouldn’t have drank so much Coke.
    WHAT I THOUGHT: I’m really sad I didn’t get to go to my grandfather’s funeral. I always felt a connection to him, and now that I have D too it feels stronger. I know Coke doesn’t cause diabetes.

  2. A family friend had Type 2. She eats normally, and takes insulin. She had Christmas dinner with us one year, and after eating she lifted up her shirt and injected herself.
    WHAT WAS NOT SAID: Why can’t you eat normally like her?
    WHAT I THOUGHT: She died all alone. Her maid was supposed to take care of her and the house, but she got away with murder. I bet her confusion had a lot to do with her D.

  3. The lady in the Post Office told me about her husband. He has D, and developed a foot ulcer. They couldn’t get it to heal. Eventually he had to have it amputated. He is now in a wheelchair, and sometimes the local supermarket hires him to work for them for short periods. You really need to watch out for your feet.
    WHAT WAS NOT SAID: Nothing, it was all quite blatant.
    WHAT I THOUGHT: I’ve only had diabetes a month, and this is too scary to contemplate right now. Will that happen to me? Maybe his blood sugar was out of control, and mine will never get that way.

Hi again,
that sounds really familiar. My endo gave me a book about t1 right after diagnosis. I couldn’t even look at the chapter about possible complications for the first few weeks.

Thankfully, very few people tried to tell me horror stories about how their second cousins third wife had diabetes and had to have their legs amputated with the clear implication that THIS WILL HAPPEN TO YOU TOO! I always told them about my grandmother who had diabetes for close to 15ys with no complications whatsoever, thankyouverymuch.

Right now I’m at a point where I just don’t worry. I try to take good care of myself and the rest is out of my hands.

Megan –

Some points that have been made to me, quite strenuously, and occasionally with obscenity, over the last few months:

  1. A lot of the data on complications, shortened life span, etc. is based on old data. While we all kvetch about the inaccuracy of our meters, in the old days, they just wanted to make sure you didn’t go hypo, and didn’t worry much about hyper, and you didn’t have the assortment of insulins available now. It was 2 shots of NPH twice a day, and if you didn’t eat a snack at 4PM, you were in the ER. (As I recall, NPH peaks 8 hours out. I think they just kind of hoped you didn’t crap out in the middle of the night.) Since we can now have much better control over our diabetes, the likelihood of complications is reduced significantly. Newer studies have shown that. (I think the studies are called DEFEND and ACCORD, but I wouldn’t swear to those names.)

  2. For every story you hear about the person who had body parts fall off in the street from diabetes, you hear stories about the people who have had T1 for 50 years and have NO complications. Your pancreatic mileage may vary.

  3. The vast majority of patients across the board don’t listen to their dieticians/doctors/nurse educators/people who know what they’re talking about. I personally know several T2s who manage terribly (one checks his blood sugar once a month and is happy if it’s under 200; another eats pastrami sandwiches and potato knishes on a very regular basis - though I have to admit I eat the pastrami sandwich part, the potato knish is essentially a tremendous lump of carb - about 1.5 potatoes, mushed up with garlic and pepper, and wrapped in dough; and the third drinks regular Coke “because that’s the only sugar in his diet.”) If you use the tools that we have available to manage diabetes, you’re much less likely to have complications.

  4. Assuming arguendo (that’s lawyer-eze for “let’s pretend”) that a person, for whatever reason, is predisposed to certain complications (for example, I probably am predisposed to the cardiac complications because of a spectacular family history of cardiac disease, and further assuming that intensive management doesn’t help, it’s off in the future. There’s not a damned thing you can do about it now, so worry about it when it happens! (This one isn’t so effective for me, personally, but I figured I’d throw it out there.)

As for the eating thing - I keep myself on a pretty low carb diet. My parents - both MDs with endocrinology backgrounds - think I’m being too crazy about it. I’m keeping my fasting sugars betwen 95-110 and my posts between 80-135 (and the 135 is when I have a really high-fat meal, like 3 eggs with cheese, 2 slices of bread, and margarine/butter). Again, your pancreas’s mileage will vary. You have to do what’s right for YOU, not what someone tells you about a diabetic who may or may not have had the same form of the disease as do you and who may or may not have had anything resembling good control does. I know this contradicts my point about listening to doctors to some degree - but what I would say is that the medical professionals can point you in the right direction; to a large extent, and a good endo will tell you this, you need to figure out what works best for you.

OK, I seem to rant a lot :slight_smile: Back to reading transcripts of oral arguments.

– Dov

Here’s a story - I hope it helps…

I’ve lived with type 1 since I was eight years old, I’m now 35. In 27 years, I have only two (minor) complications - a little bit of spotting in my peepers and some gum issues that the docs say is probably related to the D. I take insulin. I test. I worry some.

What is not said: I live an (almost) perfectly normal life. I have a great partner, a great job, a great family. I exercise regularly, I work hard at keeping my diabetes under control. It isn’t easy, but it is certainly do-able.

What you should be thinking: I can do this. I will do this. If I stay in control of my diabetes, everything will be just fine. I’ve got a great support network out here in the internet ether - they will help me deal with this. I am strong - and I will be OK.

Hi Megan,
Your story sounds so familiar. It seems that some families do not find it necessary to share their health with each other. I am unsure why they don’t. My Husband was diagnosed w/Type 2 diabetes. Since then several of the Males in his family have been diagnosed with Type 2. They are finding that it is hereditary in their family. They all die suddenly of Heart Attacks (at very young ages 45 and up). My Husband was the whistle blower (I believe its a male thing in his family, not wanting to admit something is wrong i mean, it is also male hereditary, none of the females have type 2). My Husband is not way overweight so he does not fit the typical Type2 diagnosis. I recently asked him to have the dr. check to see if he is type 1 again. After reading Many’s story, it sounds so familiar.
We thought that we would not have to be concerned with our other children, but since then my 14 yo was diagnosed with Type 1 diabetes (she is not his biological daughter) Now I fear that at least 1 of them might have it.

I guess the thing is, do the best that you can. Don’t let anything stop you from doing what you want. Don’t let Diabetes take over your life, take control over it! Do what you can NOW to keep those bad things from happening (the stories). People ALWAYS tell you the worst stories. Your life does not have to end up the way the gentleman who had is foot removed. You Control it.
Good Luck. I am sorry for the book and possibly getting off point.

Hi Megan,

Yea, that post brought back some memories…

I was dx’d at age 7 and a lot of times the adults around would not pay attention to the fact that I was pretty much soaking up everything the were saying about the bad things that were gonna happen to me. That’s a lotta crap for a child to deal with (any child, not just me). It always seemed so certain that all these bad things would happen, even if I did take care of myself.

Reminds me of rule #1 : Keep unsolicited medical advise and stories to yourself

It is no wonder that I suffer from clinical depression, and have for as long as I can remember, Medications seem to be really helping lately tho, so I am doing better. I think any child that suffers from some type of life-threatening or chronic disease is at risk for depression (did I just violate rule #1?). And they are finally saying that depression can effect control (really? wow) and there is a link between the two. Which comes first? Is it a physiological link or a mental issue caused by the stress?

Anyway, I believe that most of these people honestly want to help, but the stories they are telling may not be timed right with the stage of acceptance of disease you are currently at. Heck, I’ve been diabetic since 1970 and there are still days/weeks/months where I am just annoyed by it and honestly really don’t want to hear anything from anyone about what happened to their second cousin, twice-removed on their papa’s side in 1947 after being diagnosed. Seriously, we have enough things to worry about on our own, we don’t need to have folks gift us more…

I’ve been really fortunate, no major side effects yet (seems my bank account takes the worst beating), a little neuropathy starting and my retinopathy is actually getting better, so I am grateful for that. But like everyone else, the constant day-to-day management of a project that will never end can get frustrating as hell sometimes…

OUCH!!! fell off my soapbox

Sounds like you’ve got a good head on your shoulders; you’ll do fine with it. My take on the “D” is this: I made some changes in my life and I keep on living, I can do the same things that I used to do and enjoy them just as much! It’s not cancer, and its not AIDS, it’s just the “D” word and that is all. Take care of yourself because you are a responsible person that cares about you.