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

Type 1 and LADA
1

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 :)

2

For Getting T1?

I would recommend getting copies of :

Think Like a Pancrease by Gary Schiener
And Using Insulin by John Walsh

It will give alot of Insight and Answers that may take Months or Yrs to get from the Medical Profession and Help a great deal…

3

What to eat! I had lost 10 lbs prior to my diagnosis and then another 5 or so after because I was afraid to eat. I really felt unsure about what a GOOD number of carbs was for a given meal. I was hungry for weeks…

Also, it’d be much better if they gave a single binder/booklet with most of the information instead of just a bunch of things printed off from the internet (you’d think a major hospital’s endocrinologists would have something!).

I really wish I could say I was given good info when diagnosed, but I wasn’t. I was juggled between student endo’s who either just thought shoving printed pamphlets at me were an acceptable solution or ignored the fact that I had a paralyzing fear of needles and basically told me to just get over it. The nursing staff was much more helpful and sympathetic than any of the endo staff, in my experience.

4

Haha, Elly - I remember having a “wtf?” moment when the nurse handed me a printout of the type 1 diabetes article from wikipedia. I was at a major hospital too!



I remember what to eat was a big question for me as well. I must’ve spent over an hour planning and recording each meal i had for the first week. They gave me sample diet cards - a 2000 calorie a day, weekly list of meal ideas, but it just wasn’t things i wanted eat, or was used to eating on a daily basis. after some trial and error i’ve been able to keep a lot of the foods i typically ate before. i’m just more conscious of how much i eat, and make sure i have protein and fat along with carbs.



one of the things they could’ve done with me in the hospital was go through the current meals i ordered while i was there. 3 days, 9 meals. not once did they go through the carbs with me, or tell me how much insulin they were injecting. they just came in every few hours, took my bg reading, and announced some outrageously high number each time. looking back, i think they could’ve used those first 9 meals i had as an official diabetic to teach me how i’d have to eat. instead, i was released, went home, looked in the pantry, and my head spun.

5

I was 9 when I was diagnosed and I specifically, remember asking the nurse, “So, how long will I have to take these shots for?” In an attempt to shield me from the realities of diabetes she replied, “For a while sweetie, a while.” I said “O.K” and was soon distracted by a t.v show coming on the screen. I never asked about it again throughout my hospital stay. It wasn’t until a couple of years down the road that I randomly asked my Endo at one of my visits. I remember just assuming she’d tell me I’d only be diabetic for a year or two longer. Finding out that this thing is indefinate/FOREVER 2 years after my inital diagnosis was really hard on me.

So…I wish someone would have told me as a newly diagnosed child that diabetes was a chronic illness. I’m sure it would have been a sad and difficult conversation to have with a little girl who had just turned 9 years old but I wish it had happend sooner instead of later.

6

Well, when I was first diagnosed none of the doctors even knew the difference between t1 and t2, so for the first day I was told I would be on pills and it was no big deal. I was so devastated when the endo came in and told me I’d be having shots everyday for the rest of my life especially since needles were my biggest fear. Also they never gave me direct shots with my meals while I was in the hospital so I had no idea I would have to be doing that every single meal or count carbs until I was just about to leave, it was way too overwhelming.

7

knowing that one unit of insulin lowered my BG by 3mmol/L. When I found that out it helped me alot when correcting my high BG levels. Made things alot less complicated.

8

My friend was diagnosed T1 at 2 yo.
He is now 49.
You need to remember there was no internet revolution only up to about 10 years ago, and information really only exploded about 10 years ago.

He now has the beginnings of many of the serious complications of db: kidney, eye, heart problems, neuropathy, frozen shoulder, problems with his ‘rude’ bits, and his overall health complicated by liver probs etc.

He always says to me that they only told him when he was in his twenties how about how ‘serious’ these things could one day be to his health. Even after that, it took a few years to truly understand the gravity of the situation.

He really wishes, looking back, that they could have really explained ‘how serious’ things could one day really get.

Yes, he wishes they told him how much (if left uncontrolled!) db can affect his body.

He is a little regretful.

He now has GP appointments, specialist appointments for all the things above, appointments for new problems which often require many more tests, scans etc, so is in and out of hospital non stop…

Sorry for going on a bit here here, but I want you to understand what he really wishes they him about just how complicated it can get…like juggling 20, 30, 40 50 or more balls!

Sorry.

9

On valuable things worth knowing:



My mother was diagnosed in 1986 (25 years ago; on oral meds for first ten years; shots for last 15 years).



Valuable things they told her were:



On diagnosis:

-Control your diabetes for the first 10 years, and you’ll be ok (if you dont, you are setting yourself up for big problems later)

-Watch portion size

-Exercise

-With Diabetes, there is ‘alot of information to learn’ (diet, health, …)



When oral meds didnt work and it was time for her to start shots:

-if you want to see your grandchildren grow up, control your db.



I have managed my mother for last 25 years.

I really believe, at the end of the day, a person really needs a good worthwhile ‘reason’ for all the hard work it will take:



…like the love of

family

god

country

or even just life !



Good luck. You can do it.

10

Dear Leah,

Go to JDRF and look at the JDRF_Adult_Type_1_toolkit. It’s in pdf so can be downloaded to read. I’d suggest taking ONE area to develop WELL. I think I mostly reacted negatively to the whole overwhelming list of facts that I read. My head was in a fog and my eyes glazed over!

I have yet to run into a new diabetic who doesn’t feel overwhelmed with all the LifeSkills papers that come out of the hands of CDEs. You can’t help but leave out important information if you decide to try to make a fact sheet including it all. And you can’t emphasize without underemphasizing something else.

Or you could take ONE fact and develop it. And it would become useful to YOU, too!

I had a hard time finding low and no-carb snacks when I started out years ago. Now d-Life has a list that can be improved upon.

I had a time deciding on which CGM to use. (I finally decided on the smallest bore needle I’d have to use as introducer.). There’s a lot of info to digest and there are some nice charts to use in your development in this case. Go to dexcom.com or to one of the other manufacturers.

I had a time figuring out all the possibilities that were wrong when I had highs in the morning. The problem isn’t as simple as dawn phenomenon. It has more aspects.

I will always have a time figuring out the carbs of a meal in a restaurant. (Tuesday I was at Egg Harbor, had a cheese omlet, skipped the potatoes, and still, 2 hours later, had to give 3 more units Humalog.) There have to be questions a diabetic should ask the waiter - but primarily the cook - about the menu items before deciding.

Delving into one topic may be more difficult, but it is really what is needed.

Just my opinion. And ENJOY your project! I hope it’s really useful to YOU!







I

11

I wish I had been told that the mental aspect of dealing with diabetes is just as important as nutrition, physical activity and medications. Newly diagnosed (and those who have had it for years) need to be told that it is normal to get burned out, overwhelmed, etc. They need to be taught coping stategies, how to set goals, ways to manage stress, techniques to stay motivation, etc.

They should also be told that learning about diabtes is a life long process. We never stop learning. And then they need to be told exactly where and how to find good solid information and support. Support groups, magazine subscriptions, webisites, etc.

The fact sheet needs to contain informaiton that dispels the myths of diabetes right from the start. It needs to list those alternative medicines/treatments that actually work (and back it up with citations from peer reviewed publications) and those that are just wives tales.

They need to be told tactful ways to set boundries and how to handle the diabetes police.

Please share your fact sheet when you get it done. I think this is an excellent project and I wish you all the best.

12

What they told me? Now remember this was YEARS ago!!! They told me not to eat sugar of anykind that I wound’t live to be 30 and NEVER have childern. Today? I’m 47 years old mom to 2 girls and grandmother to 3 kids. @ girls and 1 boy! Now with that said , (had to say it b/c your really lucky to have it in these days and times) I got nothing postive out of my diagnoses.

13

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.

14

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.

15

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.

16

Whether I was insulin deficient or insulin resistant. Nobody ever thought of checking this.

17

That you do not have to eat a minimum of 130 carbs per day as dieticians recommend, low carb and exercise are the answer.

18

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?

19

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…!

20

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