Things you wish they'd told you when you were diagnosed...

I am studying Chronic Illness this semester as part of my nursing course requirements, and 

I have to develop a project that can be implemented while I am on clinical placement which is focused on a chronic illness that will improve patient education and better involve them in their care.

 

As I have just been diagnosed with Type 1 Diabetes myself, I have decided to do a fact sheet that can be given to newly diagnosed Type 1 diabetics.

 

During the stage of being diagnosed with diabetes it can be very overwhelming with a HUGE amount of information to be absorbed. I am hoping to include all the important stuff that they will need to know, that is often either not discussed or is lost during information overload!

 

Being a nursing student when diagnosed, I aready understood some of the information that others may not have, so I am hoping to get some advice on what to include in case I leave out some important info.

 

If you guys could tell me some of the things you either were not told, or on the other hand things you were told that were very valuable when first diagnosed I would be very grateful.

 

 Thanks, Leah :)

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Things were different back when I was diagnosed and I was also lucky to have a pretty good doctor. We didn’t have the internet back then but I ordered stuff to read from the ADA and bought whatever books I could find about diabetes. I think the suggestion of getting Think Like a Pancreas or Using Insulin was a good one.

I would also give them a link to sites like TuDiabetes and let them know they can learn so much more by talking to other diabetics than their doctor could ever hope to teach them.

I would let them know the importance of testing and just because something works today doesn’t mean it will work tomorrow.
I was told to make an appt with the endocrinologist and I would get my info there. I was told to go to the drug store to get the one touch meter, strips, and fill Humalog and lantus rx. Came back crying as I spent like over 200 dollars on supplies, etc. I was showed how to give shots and how many units and that was it. I was clueless. I went to the book store and bought the American Diabetes A-Z about diabetes book. It was more helpful than the dr. I learned I could eat everything I ate before but in moderation. Even when I went to the endocrinologist for the first time, i wasn't trained much on it. So I mostly did my own research. I agree with thinking like a pancreas. I recently finished that book that I took out from the library. I loved the book so much that I went and bought a copy. I also wished they told me about the problems that could occur if you do not have the diabetes under controlled. I learned the hard way when they told me I have to go on lisinopril for my kidneys and they only told me it would stop the failure of my kidneys. I go to Joslin now and they have a wealth of information, I am now going on a CGM and hopefully a pump. But I do wished they sent me to classes to learn about this stuff.
Reading some of the other posts made me think of a positive bit of info I was given when in the hospital. The endo DID tell me that yes, I could have children in the future but it just took more planning and that the chances of passing it on were very slim. While I am not planning for kids anytime soon, it was good to hear that and take one more weight off of my mind at the time.

I guess having some good statistics on long-term consequences of diabetes can help in conjuction with information with how to feasibly live a "controlled" lifestyle and be healthy. But like has been said, there really is a huge range of information that is pertinent to a newly diagnosed diabetic so it's hard to narrow it down, depending on how simple or short you want the information to be.
Whether I was insulin deficient or insulin resistant. Nobody ever thought of checking this.
Yep, same here, Anthony. I don't think I was even told (incorrectly) I was Type 2. Everyone just assumed it. After all I couldn't have "the type kids get" when I was 58, right?
That you do not have to eat a minimum of 130 carbs per day as dieticians recommend, low carb and exercise are the answer.
Life Expectancy for Type 1 Diabetes

Although, type 1 diabetes can happen to any individual, it is much more common in children, adolescents and teenagers (and hence is referred as juvenile diabetes). Type 1 diabetes life expectancy is indeed very difficult to ascertain due to the incomprehensible nature of the ailment and lack of data. On an average, the life expectancy of a person suffering from type 1 diabetes is reduced by 20 years. However, there have been cases wherein people have lived for more than 25 years after the disease was diagnosed, and there are other cases wherein people succumbed to illness within a decade of illness. Of course, many factors come into play when you try to calculate the average type 1 diabetes life expectancy. Researchers believe that the life expectancy of type 1 diabetes, to a great extent, depends on the age at which the ailment is diagnosed. Some studies reveal that the life expectancy of someone with type 1 diabetes which was diagnosed after the age of 15 is far less, compared to that of someone whose ailment was diagnosed before the age of 15. This supports the fact that earlier the ailment is diagnosed, better are the chances of living a long life.

Allegedly, keeping our BG's at or below 140 is the goal, since above that causes the problems
But seeing as they are using our A1c's as their primary guide, you can have several 175's a day and get several 80's and your A1c will come in per their safe range ( currently 6.7%) and say You're Doing Fine..
Which we know is Not true...

Also, It's In the Carbs.. Unless you get the exact # of carbs & Know what your Insulin-to-carb raio is ? It's all but impossible to keep decent control .. And Unless your Carrying around a Briefcase of all your supplies and a Weigh Scale? You're pretty much SOL.. All the Modern,Insulins, meters, Pumps , CGM's and having the "right Basals" aren't going to help you if you don't get this part of the equation right, everytime..

Using the labels Is another Devious Trick they pull. None are uniform.. they use the smallest amount to show the lowest # of carbs per "their serving".. Like 1 tspn. or 1 ounce or someother devious method to show ..or How about one of my favorites? Sugar Free! Take Dairy Cream vs Low Fat Milk.. Per 1 blspn = 1 carb, every have 1 tblspn? you just pour it in, ave 1/4 of a cup.. now go measure how many tablespoons = 1/4 of a cup..It turns out to be about the sameas the Low fat milk.. And you think Men are going to go thru all that ? You going to measure how much a 1/2 cup of Whatever,everytime?
Then if your even 1-2 units to little? Bingo! your 175's 2 hrs later..and wonder why and beat yourself up all the time.. I end up just sticking to a Few Types of Meals for each timeframe of B/L/D and Snacks I know and have dialed in.. If In doubt for Lunch or dinners? Healthy Choice Meals.. Or Eggs and sausage patties... and a Salad with V&O... Or Just a broiled Chopped or small Steak and Salad with V&0...

Eating Was one of the Joys of Life and Socializing, now it's a Drudgery.. or just boring and get it over with.. and Yes, I think one is better getting this Disease at a Much Younger Age.. they Don't Know what they're missing..and create alot better eating habits as well.. No wonder they have Lower TDD's and higher I:CR's and need alot less insulin over-all. and Most Nutriontist , Dietitians and the Medical Profession as a whole ? Are Worthless to even Dangerous..!
Hello Leah:

Interesting question, you will be a far better nurse than your peers. You ask hard questions...
I was a toddler, too young to understand or ask any questions. Given the ability, I would love to have heard:

"...We don't have a clue what we're doing most of the time. At the end of the day, we ("white coats") support you in your efforts. . Truthfully, we try and scare you... and are really baaaaad at it.
..."
Stuart
I was four at the time and all I remember is hearing my mom say, when I was getting married at age 21, was, "Well the Doctors were wrong - they said you wouldn't live past age 6." That probably wasn't the best of bedside manners.
I was told when I was diagnosed (December 1983) that I needed to take care of myself but that by the time I was an adult there would be a cure for diabetes. So, nearly 27 years later, there is no cure. I would say to never tell a newly diagnosed diabetic, "There will be a cure in your lifetime." There is treatment, but no cure. I would much rather have appreciated being told the truth, which is that there will be many advances which will help you with your diabetes.
Being diagnosed at age 6, I remember my parents getting the majority of the information. I still remember the "EDI" cartoon that they showed me that explained the basics (I wonder if that is still out there!). That was 21+yrs ago.

Today, I would put together some kind of flow chart type thing for what to do with different situations: i.e. high blood sugar (did you wash your hands? did you take your shot? are you running a fever? is it that lovely time of the month? etc...); low blood sugar; what doctors' appointments need to be scheduled and how frequently... endo every 3-4months, eye dr every year, etc.

Hope this helps!
I really have never felt like the Dr.s bedside was any good when I was DX in 1985. and as others have said, they (the Dr.s) tell you things can be bad, but really dont always do much to help you make sure it wont be bad other than the general "you need to get better control of your sugars." So heres my 2c for a DX infor sheet. Brilliant idea by the way. With my nurse would have had one of these sheets.

1. DONT PANIC!
2. Your going to learn more about your health than you ever wanted to know, but youll take better care that way.
3. Complications can be avoided with near normal BGs and low BG fluctuations.
4. YDMV, every one is different, some get complications some don't, but don't play Russian roulette with your health.
5. BGs over 150mg/dl can do damage, shoot for under that.
6. Diabetes management is hard. Extremely hard. Dont blame yourself for crazy numbers, as sometimes they just happen.
7. Carbs = glucose, glucose = high BGs,
8. insulin / meds / exercise (unless over 230mg/dl) = low BGs
9. Live fast, die young doesn't work. You'll just end up screwed when you get older and have to deal with it.
10. Just because your pancreas doesn't produce insulin, doesn't mean your liver stopped storing glucose.
11. There are tons of people to talk to and lots of information available. Start with Tudiabetes.org.
12. Management comes with information, information is a CGMS or finger sticks, please do them.
13. Please do research for yourself as well as take your Dr.s advise. Diabetic solution, think like a pancreas, etc.
14. Your not an orange or a pin cushion. There are lots of tools to make management easy, just ask about them.
15. Over your life, Diabetes will cost you as much as having a child.
16. Chocolate isnt good for treating lows, but fructose (fruit juice) is.

Thats all I can think of right now. I was DX in the 80s, so communication and bedside manner was hopefully worse then than it is now.

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