The help of a community may be what I need


#1

When I was nine, on a school field trip, I developed diabetes. The story of that is tragic enough, seeing as no one recognized it as diabetes, so my stomach aches were treated with the old fashion remedy of sprite. My blood sugar was just short of 2000 when I was diagnosed(I was kinda pissed that they didn’t let it go a little higher, that would have meant I would be in the Guinness book of world records for that year) My parents were told I had diabetes and I would have to cut sugar out of my diet and I was sent home. Relatively poor health insurance gets you relatively poor care. The jolting experience had a tole on my mental health and for years to come set me in an apathetic/self destructive/depression.
For many many years I just did not care, I refused a pump so I could be “normal(?)”. Recently in the last year I have taken more control of my life. I stopped drinking, stopped smoking pot(which I only started a year and a half ago), started eating what I would call healthy(looking at the diet of my peers I would say its waaay healthy) and started working out.
Now, I went to my endocrinologist two days ago, and my A1C is much higher than a healthy number. At 8.3 its not the highest it has been but it hasn’t been much lower in the last 11 years. Ive shed my apathy and I really really want to get my health in line. No one explained a bit of diabetes to me, and for a long time I didn’t care. I do care now and I want help getting my A1c down. I want to know exactly what the A1c is and how to lower it, what kind of diet are the rest of you on, and maybe some motivational stories.
Oh, and its nice to find other people who can relate to the horrors of diabetes


#2

hi James,
I was 12 when I was dxd’d and I had been on a 17 year bout with depression – amazing what we can live through isn’t it?

Anyway A1c is your average blood sugar level for about 60-90 days. The higher your blood sugar is the higher the A1c. They use the dumb % unit so you have to x-ref with a chart to figure out your average, but an 8.3 is 189 dg/ml.

4 me, carb counting and exercise is my biggest help in staying in good control – as is talking about it as much as I can. Notice I didn’t say not to eat carbs, just count 'em and bolus for 'em! The forum is a great place to meet people who have similar stories.

Testing is really important (BTW I didn’t test my blood sugar for almost 18 years, which is my personal a world record for stooopid) knowing what your bs is during the day is the same as control. I test 6-10x a day now.

Listen, if you ever want to talk, I (and the other thousand folks that are here) am available! best of luck to you!

Joe


#3

Hi James,
So glad you found us. I was dx’d 33 years ago, back in the “dark ages” of db care. I had to pee in a cup and test my urine and try to eat according to an “exchange system”. There was not bg testing, no knowing whether you were high or low, and no glucose tabs. I also have a lot of T1 relatives and had seen many of them endure realy bad complications and then die. So, I concluded that the same thing was going to happen to me and went on a big self-destructive binge for over 10 years. I felt horrible and couldn’t think straight. I am amazed that I survived and am here to tell about it.
I now test 7X per day and consider myself to have reasonable health. I’ve had some signficant retinopathy, which is stable.
TD is a great place to throw out questions and get emotional support.
Can your endo recommend a nutritionist to help with food planning? Or a support group i your area? There is a lot more help available than you realize.
And really 8.3 isn’t such a bad place to start from. It sounds like you’ve made some major improvements in the last year - good for you. I firmly believe that it’s never too late to improve your control.
Welcome. BTW, what are you studying?


#4

Hi James,

I’m so glad you’ve decided to take control of your life and your diabetes. I think it’s all about your mindset. My daughter is 12 and has type 1 diabetes. When she has her moments of feeling sorry for herself, I remind her to be thankful of everything that she DOES have. A friend of mine just died of cancer – I imagine the 5 children she left behind would have given anything to trade their mom’s cancer with diabetes. Diabetes is a disease that you can live with - and live WELL with.

My first piece of advice is to find an endocrinologist who will fight with you to get that A1C down to a level where you can be healthy. If your doctor is satisfied or nonchalant about an 8.3% – move on and find a doctor who can actually benefit your life!! You’re not where you need to be and I think you know that now (GOOD!!). The good news is, you can get there quickly if you have the proper guidance. Our doctor once told me that I needed to know as much about diabetes as he did. So, I started studying, reading, searching for answers and information.

Regarding diet, my daughter is on a low carb diet. She eats about 30 grams of carbs per day. There’s a lot of controversy over this - and there have been a lot of discussions about this right here on tudiabetes.com. It works for us - and I would recommend it to anyone.

I’ve compiled some info about the A1C on our website here – http://www.libertybella.com/HBA1C.htm.

Can you keep us posted on your progress? I look forward to every dr appt we have - and especially every A1C test. I can’t wait to find out how we’re doing. But Joe is right, you must track your blood. The blood tracking on a daily basis is what can help you get that A1C down by locating problem areas in your day and in your regimen.

I wish you the best.


#5

Welcome James, both to this great web-site and to the world of people who take seriously our need to take charge of our own health. The good news is that you are still young, and everything you do from this point forward to keep your disease in check will be effective.

I’ve had worse A1C’s than 8.3 and after 31 years of T1 I’m still without any complications. So there’s no reason for you to despair.

Different T1’s eat different diets. Some eat very low levels of carbs, some (myself included) are on a slightly reduced (lower than the average diet) carb diet, and some eat pretty much normal levels of carbs. The key is proper timing and amount of a bolus to cover the carbs you eat.

The #1 most important thing to good control is to test, test, and test some more. If you don’t know your BG, and you try to bolus or eat more carbs, it’s like trying to correct your cars steering wheel while blindfolded. Don’t assume you’re BG is OK unless you’ve confirmed it with a meter.


#6

Hi James, thank you for joining the “club”. This diabetes is work for each of us.

Some of the D stuff is horrible, but for the most part, folks know understand how horrible and not horrible things can be.


#7

Hi James!
I didn’t know what I was doing when I became a Diabetic… Then my Doctor from Ulysses told me that I needed to go to a Diabetes Specialist. They made an appointment with one… I went to my first appointment… My Endo told me that I needed Diabetic Classes… It was a week long and it was from 8am to 4pm… That was the BEST thing I even did and I thanked my Endo… I go back every two or three years… for the updates in Diabetes care…


#8

Hey James
As a recently diagnosed diabetic, I have found the information on tudiabetes much better than information I found any where ( including my endo ). If you read some old posts on tudiabetes, you might even find posting of mine asking “Who is Dr. Bernstein?” I highly recommend his book “Diabetes Solution” which was recommended by members of this site.
Welcome!


#9

Thank you for the words of support folks.
I’m on a slightly lower carb diet, I used to eat anything and everything. I eat smaller meals more often through the day, this kinda deals with my fitness. Ive cut all soda out of my diet, Its pretty much water and thats it. I count my carbs for my pump but I don’t test my bg every time. money is short and my doctor has repeatedly shorted my prescription to 200 strips for 3 months, I have to remind him every time. I don’t consider him a bad doctor, hes very strait forward with me, I have just been a bad diabetic. I’ll be moving soon and I don’t know if I want to change endos.
I appreciate all the help the community has to offer, and Im gonna spend some time digging through the forums.

James