What made you finally take control?

Type 1 and LADA
1

From reading people's comments on TU Diabetes over the years, there appear to be a large number of people who at one point or another made a positive shift in their diabetes control of cosmic proportions.

After over 35 years of diabetes, for me it was my cardiologist telling me out of the blue that my A1c was crap. I'd only heard about the existence of A1c a week earlier. I just started searching the Internet and also ordering books. It took me over 6 months to fully clean up my act. I gave up depending on my Doctors to fully look after me. I realized that it was my job.

I'd like to hear other people's experiences. What was the catalyst? What was the process that followed for you? Do you find it easy to stay focused?

2

Forme it was 24 years ago when I found out I was pg with my 1st daughter. I had to take care of myself to get herhereall intacked. Then after I had her I decided I wanted to see her kids. So that's really when I started taking care of myself

3

Getting complications was the wake-up call.

I had great numbers for years. When I say great, I mean A1Cs in the high 4s and low 5s back 25 years ago when I don't even know what the guidlines were. I had a very encouraging endo and nurse practioner who never warned me about the dangers of low A1Cs. I had what I could only think of as being an extended honeytmoon phase for a good 5 or 6 years where I took a ridiculously low basal and practically non-existent bolus, but never saw an A1c out of the 5s.

I just stopped thinking about diabetes at all and it all just fell to the wayside. I started having not so good, then terrible numbers when and if I saw my endo at all. I had no clue what that meant, at all. A few years ago, 20 years in, I got my first complications and finally did my research.

Scared crapless, it didn't take much motivation to actually start paying attention to my condition.

In no way, shape, or form does it seem as effortless as it did 25 years ago, but I've been firmly back in the saddle for a few years. My complications have either reversed or stabilized and I feel a hell of a lot better. That's all the motivation needed to stay focused.

4

Well, I think I'm still going through that process, but ...

As a kid and teenager I really didn't think about diabetes much. I was responsible with my shots and diet, and my A1c stayed around the low 7% range (not bad on two shots a day).

Then as a late teenager/early young adult I slacked off on control as is usually common. I still did my shots but only tested 2-3x per day (which was actually not horrible considering 4x is what was recommended) and didn't really care what I ate, didn't do any exercise at all. My A1c rose into the high 8%/low 9% range where it stayed for about five or six years.

Then in my mid-20s I suddenly got interested in diabetes and read a bunch of autobiographies. Every single autobiography had the person developing complications at some point. I realized that at 25 I had already had diabetes for over 15 years, and that I was going to have to live with this forever and didn't want complications. I decided I needed to do something about my level of control.

I switched to MDI and then the pump, started testing 10x a day, learned about diabetes (I had literally forgotten everything, I didn't get much education when I was diagnosed as I was young), started exercising regularly, started logging everything. I brought my A1c down into the low 7% range again. Even got a few results in the high 6% range!

About two years ago I went through MAJOR burnout. We're talking not counting carbohydrates, not logging, sometimes not bolusing for food at all ... A1c rose into the mid-8% range.

Decided after about six months to a year that I was being super unhealthy and had to snap out of it. Lowered the amount of carbohydrates I ate, exercised daily, started logging everything, and got my A1c back into the mid-7% range. This is where I am today and have been for the past year.

My ultimate goal is to get my A1c to around 6.5% or below and keep it there, but it's also trying (and failing) to reach this goal for five years that led to my major burnout. I don't want that to happen again, so am trying not to stress out about it. I have, however, made MAJOR changes in the past six months, so I'm hoping this will help me break into the low 6% range (where, in 20+ years now, I've never been).

I think years down the road I might look back and see the past eight or so years as my "turning point" interrupted by about a year of total burnout.

5

It may sound contradictory, but hope that one day we will find a cure motivated me to think a lot more positively about the future. Before I really got involved in the DOC, I was quite a bit more negative and did not see my health is a prime importance, as that was the way things were always going to be, I thought.

However, talking to more people in the DOC, reading about all the different research towards a cure made out there, it got me thinking that we need to keep on trying, we need to keep on pushing and stay as healthy and as positive as we can - positive energy is what will bring about the change that we want to see.

6

I found a copy of A Smart Woman's Guide to Diabetes by Amy Mercer. Reading it turned my d-life around. For many years I tooks my meds faithfully but I didn't test, I didn't watch what I ate and I didn't exercise to lower my BG. My A1c's weren't all that high but they were higher than I like. After reading Amy's book I realized that I wasn't alone and shortly thereafter I found the DOC. I can't tell you what a difference it has made in my self care.

7

Same here. It seem like the first 15 years were very easy, then after that it got a heck of a lot trickier.

8

When I was in my late 30s, I started noting obituaries of people about the same age noting ADA/ JDRF/ etc. in the "make donations to..." section and it made me consider potential consequences of achieving decent control while gaining weight and have been working to be healthier since then. I think I'm probably a lot healthier than many of my "straight" peers, who don't have diabetes?

9

Oh I went through YEARS of just pure rebellion, knowing better but not caring. The fact that I have remained complication free probably didnt do anything to motivate me to change my wicked ways. LOL. However I've had this for close to 30 years now and I've figured I'm gambling with my life and health and it's a game Im probably going to lose if I dont get it together and get in control. So I did.

10

I have only had diabetes for 14 months, so I can’t answer yet, but I think it’s a GREAT question, thanks for asking!

11

similarly, i have only had the big D for 2 months so im a rookie. Very good topic though, a good reminder that we need to always pay attention. Im very much into fitness/triathlons/running and its also a part of my job description, so my major concerns come with changes when the honeymoon is over aswell as immediate problems such as the balancing of carbs around exercise and possible lows. I have already encountered a few.
The fact that i eat the exact same thing every day (with occasional deviations) will hopefully make this easier. Im very much a routine person and test about 20-25 times a day. According to my OnTrack app, im sitting at 5.2 average for the 2 months i have been diagnosed and put on insulin.
My immediate problems are perhaps being too low rather than high. For now atleast, im sure i will get many curve balls.
What scares me most is the amputation side of things.

12

For me two big shifts:

1: 30 years ago I started doing home bg testing thanks to a hookup with the state university research hospital folks who knew about it. That was so much better than what I had available to me up until then (urine testing). Believe it or not: back before then, to get a bg reading me and my mom had to go to the doctor's office, he would draw blood, and then like a week later we'd get a phone call with the number. I had home bg testing before my local docs knew it existed or could do it in their office. (To be fair none of the local docs were endos either.)

2: Inspired by what I could read and pick up about the DCCT research then just rolling... About 25 years ago I shifted from 2 shots a day of R+N, to an MDI routine based on R for bolus and N for basal. Lots of folks here bad mouth N but I got pretty good at this routine, and my comparatively recent shift to the fancy pants analog insulins isn't really a big improvement over it. The 2 shots a day of R+N was really far from optimal.

13

awesome work tri-mum!
hope things go smoothly with no.2 :)

14

My pump training changed everything. Until then I had no idea how to figure out the right amount of basal, insulin to carb ratios, how to correct safely. On my non-scientific SWAGing, I was constantly going low. I bought the ADA book and read others from the library, all of which were helpful, but -- until the pump and the pump training, I was basically clueless. Now I have my Gary Scheiner's "Think Like a Pancreas" and TuD for my refresher courses, and even though I'm mostly MDI, I like to think I'm taking control!

15

Being diagnosed with proliferative retinopathy was the turning point for me. I don't find it hard to stay focused at all. I'm ashamed of how I used to control (and by that I mean that I DIDN'T control it) my diabetes. I can't imagine going back to that. I am so motivated to keep myself healthy because I know what's at risk if I don't.

Back then I had A1Cs between 10 and 14.2. Since beginning on my pump (at time of retinopathy diagnosis) I brought it down to 6.5. And for the past year and several months I've been under 6.

16

i always took care of myself as well as i knew at the time.i grew up with no sugar---no cookies weighing the food raw before cooking...urine testing...sticky sugar water down my throat when hypo...etc...gave shots to my teddy bear...& survived world war 2 hiding in a village in france.i started testing in 1985 on my own.my doc did not think i needed to do it.so i went crazy not knowing what to do with the no's...but now being on the pump it's wonderful.so much better than before.

17

Simple: Learning that I was going to become a father. I want to make sure that I am around for a long and can take care of my son, I don't want him to have to worry about taking care of me for a LONG time...

18

Wow... I generally don't read the obits, but I can see how that could have a really profound and lasting effect. I'm trying to imagine reading that over and over in the paper now (and I am in my late 30s) and couldn't imagine.

19

what great news!

20

Thanks.... that was 5 1/2 years ago (I've got two sons now), but I think I can mark that as a turning point.