10 yrs and still lost! :(

[n1000paul]

I have been diagnosed now for about 10 years. I am a type one diabetic. I feel the only time my diabetes have ever been under control was when I was in the hospital. I have been on my own pretty much this whole time. I have a very hard time gaining weight. I have a very hard time keeping my sugars where they should be and keeping them steady. I try to ask for advice but it doesn't sound too good to follow. A doctor once told me to up my carbs to gain weight "what? are you serious, up my carbs?" That just screams high blood sugar. So of course I didn't bother with the advice. I need help with a good diet. I need help with what foods to eat, what foods I should never touch. I also need help with insulin. I understand I need to take it when I wake up and when I eat but I don't understand the amount I should take and why? Are there any good websites that help with a meal plan for type one diabetics? I do not have a doctor that has been with me since day one so when I see a doctor its like they know nothing about me. (obviously...but its just hard to explain) Sorry I'm just typing whats in my head at the moment. I will be posting plenty of more threads lol so I hope none of you mind. Thanks for the help. I need it!

[BlueSky]

Welcome to the forums. You sound kinda lost. There are some really good books out there. Using Insulin by John Walsh and Think Like a Pancreas by Gary Scheiner are both excellent. ... I also need help with insulin. I understand I need to take it when I wake up and when I eat but I don't understand the amount I should take and why? ....
What insulin are you using?

[n1000paul]

I am currently taking Humulog and Lantus. I take lantus only when I wake up (35 units) and I take humulog everytime before I eat or when I check my bg and its too high. Its very often I ever have a good number when I check. :( I try watching what I eat but I'm obviously not doing a good job. I have been on many different kinds of insulin but none have helped me achieve good health. I know, its my fault. I cant seem take control of my diabetes, its the other way around!

[BlueSky]

With Lantus and Humalog you should be able to get pretty good control. But you need to be systematic in the way you work out what the required dosages are. Firstly, you need to establish if 35 units of Lantus in the morning is providing the right level of basal action for you. Because if it isn't you will never have good control. You test the Lantus dose by skipping a meal and testing your blood sugar every hour. If the readings go down, there is too much Lantus at work. If the readings go up, you need more basal action.

When you have done this for all meals and tested at night too, you will have the info you need to modify the Lantus timing and dose. You may even need to consider using a third insulin or switching to a pump. When you have got you basal insulin sorted, you can then start working on your mealtime doses. You will be able to work out a reliable insulin:carbohydrate ratio that will bring your blood sugar back into the target range within a couple of hours of eating.

I suggest you get one of those books I referred to in my last post. They explain all this stuff in detail. But having said that, feel free to ask questions. ;)

[BEdmonson85]

Although, I have only been DXed for about two years I know exactly what you are going through, n1000paul. My doc originally incorrectly DXed me as type II and had me on metformin -- didn't work. When she finally switched me to insulin, NovoLog and Levimir, she never explained to me how to count carbs., my insulin : carb ratio, or basal rates. ****, I didn't even know what a basal rate/dose was. I was told to take 10u of Levimir at night around the same time. After about 1 -1/2 years of high BGs, I finally decided to switch doctors. He taught me how to count carbs and gave me a guidline to go by when taking a meal time dose. I really suggest maybe scheduling a time to sit down w/ your doc and explain the situation and get inrolled in a diabetes education class (usually free or paid by insurance company). And if you have decent insurance, ask about insulin pump therepy. It has been life changing for me.

-BEdmonson85

[n1000paul]

thats the thing, i have no insurance and i haven't had the same doctor since i was 12. i have been getting my prescriptions filled by random docs when i have a "appointment" with them which only last about 15 minutes which clearly is not enough time for me to explain to them what i have been through. they just tell me to sit quiet because they know what they are talking about. ever since then i have not seen the same doctor twice. it brings me down because i have to try to explain myself everytime but i dont get anywhere with them. i have started to dislike doctors entirely. i find them all to be a**holes so far. i just moved to a new state and have nowhere to go for my supplies or insulin. im in a bad situation. i was getting my supplies from a free health community clinic before and i am looking for the same thing here but no luck so far. i hate diabetes.

[ant hill]

A doctor once told me to up my carbs to gain weight "what? are you serious, up my carbs?" That just screams high blood sugar.
Hello Paul :), Diabetes is all about balance and I would increase the insulin and eat some carbs, Good carbs!!
Once that you have that balance you will gain weight. :D
I also need help with insulin. I understand I need to take it when I wake up and when I eat but I don't understand the amount I should take and why?
Take up insulin slowly and have a test before you eat and have that fast acting insulin and then eat and have another test 2 hours after your first bite. I test quite alot as for us type 1's we look at testing seriously!!! ;)
I do not have a doctor that has been with me since day one so when I see a doctor its like they know nothing about me.
I would see an endocrinologist as they would know far more than a general doctor would know. :)

[xMenace]

Welcome Paul,

You're not alone. Many if not all of us are frustrated with the skills we supposedly learn from our health care teams. That's why we're here. Blue Sky's right about the rates. Once you learn your optimal rates and maybe a few techniques to control spikes, everything else seems to fall into place.

Some quick reading: Getting Down to Basals :: Diabetes Self-Management (http://www.diabetesselfmanagement.com/articles/Insulin/Getting_Down_to_Basals)


As far as diet goes, there is no such thing as a diabetic diet. In fact, you are right, what they tend to promote is more likely to kill us than make us healthy. I've always intuitively avoided the diabetic cookbooks.

What to eat is actually quite simple: Eat Food. Not too much. Mostly Plants. Many on here will exchange plants for protein. I have no issue with that as long as you get enough carbs to function normally. I'm curious why do you need to gain weight. Are people hanging flags from you? ;)

Michael Pollan on The Hour with George Stroumboulopoulos on CBC (http://www.cbc.ca/thehour/video.php?id=1992)

[Mich]

Welcome to the group. You can find enough info online to get yourself squared away. The books recommended by Blue Sky are excellent--they same ones I recommend.

Here is a website that can help you find an affordable or free clinic: Find a Health Center (http://ask.hrsa.gov/pc/)

Your first task is to get that Lantus dosage right. It should keep your blood sugar constant with no food and no activity. Then you can experiment with what to eat.

What type of meter are you using and how often do you test?

We're glad you found us.

Mich

[shiftzor]

Best way to achieve all of this is to write it down, write down all your morning bgs for the last week and look for patterns, note the days you skipped breakfast and/or lunch and start adjusting Lantus dose in 1unit increments. Your best bet in tackling meals is to write down the amount of carbs you had, the amount of insulin, bg pre-meal and 2-2:30 hours after the meal. You can download the meter readings to your computer using a data cable and blood glucose monitoring software if it makes it easier, which you can get from the company that supplied your meter. It gets much easier once you have your basal and bolus set, you will feel better and can then afford to relax a bit, until your requirements change again happens every once in a while due to activity levels etc.

[ProudMOM]

Welcome to DF. I saw your thread and wanted to let you know that there is a Diabetes Expo in Phoenix this Saturday, April 26 sponsored by the ADA. Perhaps you can gain some info and freebies if you are able to attend. There will be vendors there and maybe they could refer you to an assistance program. There was an insert in today's Arizona Republic. My son still sees his pediatric endocrinologist, but I do have the names of some good adult endos if you are interested. Please PM me if you would like the names. You deserve to be educated on all aspects of diabetes. I am sorry to hear that your doctors have dropped the ball. I wish you the best of luck in getting your answers--keep working hard and let us know how we can help.

Valerie

[BlueSky]

thats the thing, i have no insurance and i haven't had the same doctor since i was 12. i have been getting my prescriptions filled by random docs when i have a "appointment" with them which only last about 15 minutes ....
This might come as a surprise to you. But you are using good insulins, and you don't need a doctor to use them properly. The best doctors let their patients figure out for themselves how to manage their blood glucose. They just answer questions and provide additional information when it is required. You have all the intelligence and abilty that is needed to figure out the timing and dosage of insulin shots, together with doing corrections, food choices, exercise etc. The good thing about doing this is that you don't become dependent on your doctor. You become self-reliant and independent. The T1 diabetics with the best control have gone this route.

It probably took me about 20 years to figure this out. But my control has improved enormously since I really took control of it. By that I mean making all the decisions and taking all the action that maintaining good control calls for. You too can enjoy this sense of being in control, and the knowledge that you are doing what it takes to ensure your long-term well being. You just have to make a concious decision that you are going to make it happen.

[Jamison]

Hello, all of the responses above are all true and you should follow their advice. I am lucky that the doctors got me started right off the bat. My only suggestion to you is if you want to gain weight, it would be best to put on muscle. You should start weight lifting. If a gym is too expensive, buy your own weights to keep in your house, and if that is too expensive, do the core exercises (push-ups, sit-ups, chin-ups). It is much better to gain muscle than it is fat.

[RobiJo]

Welcome to DF. If you can.. go to that expo mentioned above. Learn as much as you can. Knowledge is a great tool to managing D. I hope you are able to get a grasp on it soon. 10 years is a long time for poor or even mediocre control.

[n1000paul]

Thanks to ALL for the support!!! I appreciate it! :) I will definatley keep you all updated!

[Tattoo azz]

hi
The guys here are all right, but the most important thing is not to panic, set yourself little targets at first and test regularly and often, also get some diastix (urine test stix) if you havent already. I would seriously look at getting an endocrinologist too as they knowmore about 'D' than most GP's.
Good luck
Azz

[Rainey Smith]

I would definitely get diastix. Since your blood sugars are high you might have ketoacidosis,which causes you to either drop weight or prevents you from gaining any weight.

[n1000paul]

How do I check for that?

[shiftzor]

How do I check for that?

Get a box of these from a GP, It might sound like hard work when you start out, but once you have got it all sorted it will become easier and you will feel soo much better. All is not lost. ;)

You basically p!$$ onto the strip and after a couple of seconds it will change to a colour, you can match the colour with the guide on the box which will tell you if you have any signs of ketosis.