Need Help and Support!


(Matthew) #1

Hi, My name is Matt I am 16 years old and I have had diabetes since January 2014 so a little over 4 years and I have seen the ups and downs. The first year and 1/2 I had diabetes I had my Hba1c down to around 7%, but ever since I switched doctors about 2 years ago my bgs have been off the charts. As of right now my Hba1c is 11.2%. I have gotten into a bad habit after switching doctors of not logging my carbs and bgs, not taking my long-lasting insulin (lantus), and eating when I do not correct for it. Since all of this is happening my grades at school have dropped, my confidence and motivation has dropped, and my moods are all over. I need help. Anyone know how I can get into the habit of getting better, or any plans I can follow to help me get better. Please help im at a loss right now.


(sneathbupp) #2

Hi Matt, I’m sorry you are feeling lost. But I think it’s pretty normal to go through periods like this. I’m on shots (Lantus/Humolog, but given the busy life of high school, maybe a pump would be a good answer for you. Also, it would help to have some real life motivators- maybe ask your family to find you a new care team. One that includes a friendly diabetes educator can be really helpful. My CDE would call regularly and be available for my calls and emails to talk about anything and had some good, solid advice. Also, maybe your school has a counselor to talk with and maybe come up with a plan to address your studies and help manage the diabetes frustrations at school. Asking for help can come up with some surprising fixes. Hang in there, you’ll come out stronger in the end.


(joe) #3

@type1matt2014 hi Matthew,

I don’t know the answer. I do know that everything is related. I also know you can have any kind of control you want to have.

I don’t try to be a perfect diabetic. or even a normal one. there isn’t anything normal or perfect about this. Being angry about having diabetes when no one else has it doesn’t help me at all. 11% means your blood sugar is 260… I don’t have to tell you that having your blood sugar swing like that feels really bad. when you are sick of feeling like that then you can feel better.

I used to stare at the needle and spout off every imaginable curses at it. I would have done anything to not have to push that thing into my leg. anybody that telly you that it’s no big deal is full of $$$$. it is a big deal.

so when you are tired of feeling sick, you can just start taking insulin again, the painful one and the ones at meal times. when you are done being angry you’ll do it because you’ll want to and you know if you don’t you’ll just feel sick… it’s completely up to you. I never kept a diary. too much work. you don’t have to be perfect at this, you have to do what you have to and that’s all.

I hope you realize, very soon, that you are only at war with yourself. The only one getting a beating is you. When I realized it it actually made it easier. When I stopped fighting with myself I had more energy.

so the next move is yours - what do you say?


(Matthew) #4

I say it is a good idea, but I find it difficult to manage and take shots when im at school or after school activities. I seem to have a busy life in high school and cannot seem to find time to take care of my diabetes. How do I find time to take care of my diabetes when I am always doing something like Band, FFA, schoolwork, Drama Club, my job (work), babysitting and CREW?


(Matthew) #5

We have talked about getting an insulin pump, but my Diabetes care team will not let me have one until my bgs are normal for at least 1 year. And we are trying to switch back to my old Care team I had originally, but it all has to do with what the insurance company lets us do.


(joe) #6

@type1matt2014 Matthew,

don’t you think we all have full lives? I am managing multi million dollar projects in Ireland, London, the US (- in New Jersey Chicago and San Francisco), and Singapore. between work and travel, I have a family to take care of. So believe me it’s a full life as well but if it’s worth it you’ll make room for it. my simple motto: can’t means don’t wanna. I am positive you can figure it out.


(Dennis J. Dacey, PWD) #7

Hi Matthew @type1matt2014, what matter does it make what “doctor team” you see or if you don’t see any doctors at all? With four years “diabetes experience” I would think that by now you should have discovered that with diabetes that you must be your own primary care provider and that you see the professionals to discuss and receive tips for managing YOUR condition. I don’t know any MD who will stick by your side, measuring your insulin doses and slapping your hand away while you stuff your mouth without concern.
Somehow I’ve been able to live 60+ years with diabetes [several years without seeing a doctor or nurse], earned a couple of degrees, managed my own business and later serving as CEO of a significant national corporation.
You ask “how can I get better”: my simple answer is for you to sit down with yourself [no one better to ask] and ask " Do I want to live?". If the answer you hear is YES, then you must make up your mind to pay attention to yourself, to what your body needs and convince yourself that you will do it. Believe me, it isn’t easy and it will be time-consuming especially at first but eventually it will get to be a routing and be almost automatic. And no, you don’t need a pump at this time because of where you are at now it could be more a distraction than an assistant.

Message me if you want to talk, I’m a good listener and I could possibly make useful suggestions.


(davyboy) #8

Matt, can you get on a pump? Medtronic has one now that does a lot of the control for you, the 670g. Also, your doctor for this should be an endocrinologist, not a family physician. As far as self-care, it’s surprising you did well for 1-1/2 years, then started messing up. It seems that the change of doctors had a big effect, and therefore you need to change again. You should be seen at least every three months, which I guess you do, or you wouldn’t know your A1c.

Have honest conversations with your parents. Forgetting to take your insulin is a huge no-no for diabetics. Use tables, spreadsheets or whatever and certainly keep a diabetes diary, which includes daily logs of non-normal things, how you feel physically and emotionally. Stuff like that.


(davyboy) #9

Matt, all those things won’t kill you. But not taking care of your diabetic needs WILL kill you, eventually. Diabetics who don’t manage themselves can go blind before age 30. You can get kidney problems, which are very dangerous, and you could even lose your legs at some point. Do not think of it as an option, no matter what moods you have about it.


(Bill) #10

Hi, Matt.

First let me say that I am uncomfortable with some of the replies you received. You have identified several real stressors that can affect diabetes management (busy in high school, undesired change of care team, etc.). And, to top it all off, you are at a point in your life (as an organism) where your body is changing; insulin need/insulin response can change dramatically from day-to-day when you are a teen. I worked with a teenager some years ago who had to switch from 30 units of insulin a day to more than 120 units of insulin between the ages of 12 and 16. He felt like he was at fault; he wanted to give up. The truth is he was just going through his teen years and his body was changing. Sound familiar?

Here are my suggestions. Create a schedule and do your best to follow it. Here’s some detail.

As you know, we need food to survive. In Western culture we tend to eat three meals a day, supplemented with snacks as needed. So put those meals/snacks on your schedule and include details about the carbs you need in each meal/snack. Make the carb load the same for each meal/snack (i.e., breakfast is always 45 grams of carbs, etc.). So, get the food part of the schedule done and “Just Do It” (thanks for the slogan, Nike).

Next, make your insulin schedule. Based on your physician’s recommendations, take insulin doses at the prescribed times each day. Put it on your schedule and “Just Do It.” Make adjustments as blood glucose “patterns” warrant (a pattern is a change in blood glucose readings that persists for three or more days). Talk to your physician about changes.

Put your recommended blood glucose tests on your schedule and “Just Do Them.” Record the results, too. Do extra tests when your blood glucose exhibits a high or low “pattern” (see above) or when you feel things are “not quite right.”

Now, once you’ve developed your schedule, consider how much time it might take to get those things done each day. You’ll realize it’s about 15 minutes, that’s all! It is usually “the dread” that makes those things take longer than they need to. Forget the dread, “Just Do It!”

Now, how do you pull this off in high school? Well, you are already living with a schedule there, so tweak your diabetes management schedule so it jives with your high school schedule and “Just Do It!” Keep your blood glucose monitor in your locker or the school nurse’s office and use it according to your schedule. You might think about getting a second one - one to leave at school and one for home use. That will ensure you have a monitor where you use it most frequently.

And what about being worried that you’ll be left out of activities by your friends because diabetes management “takes too long”? Do they ever leave someone behind because they have to use the restroom? No, they don’t! I can check my blood glucose and inject insulin faster than most people can go to the restroom. Being left out should not be a worry; diabetes management does not take more time than “regular living” (except when you experience a hypoglycemic episode). Don’t worry about being left out because of your diabetes management demands.

The more you “Just Do It!” the more diabetes management will become a habit. And after you have lived with a habit for more than six months or so it will become “automatic” or “part of you.” That’s a good thing! When diabetes management becomes “automatic” your A1c’s will find their way to near normal and they’ll hover there indefinitely.

And as your diabetes management becomes “automatic” you’ll find you get a different response from your Treatment Team; they’ll express their appreciation of you and may (notice I said “may”) begin to ask how you’ve managed to do things so well. It’s all about the schedule and following it by the numbers. It’s just a matter of “putting one foot in front of the other,” minute-after-minute, hour-after-hour, day-after-day, week-after-week. Follow that schedule and “Just Do It!”

There’s another benefit, and this is the best one. You’ll begin to feel better about yourself and that depressive kind of mood you’ve been experiencing will begin to lift. You’ll get to be the person you want to be. That’s a pretty neat dividend for investing 15 minutes a day!

Does it work? Yes. My wife and I will be heading to the Grand Canyon on our motorcycle in a few weeks and I’ve had diabetes for over 60 years! It works!

And is it any fun? No! But I’ll invest an average of 15 minutes per day as long as I live so that I can go and do things with my wife, family and friends. I didn’t ask for diabetes but it is part of me and I’ll not let it dictate what I do for more than 15 minutes a day. By investing those 15 minutes I get to be me. And you can do it too! “Just Do It!”

You can do it! And the more you do it the easier it gets.

Bill


(Marina) #11

Hi, Matt!
Quit beating yourself up! What was is past – over! done!

You want to feel good, so do what will take you there:check your sugar, and take what you must — regular long acting insulin… and as much of the fast acting as you need.

As they say, the past is over---- but you can learn from it. Your reaction is like no one else’s . Learn!
The future — you can plan to apply what you learned. But — hey — later.
THE PRESENT — yessss! Thats yours --do what will make you feel good. If you don’t yet know what that is, get help. But don;t just quit!
Life will be good — work at it.
If I can do it — you can do it.
GO!


(Maria Martinez) #12

My son has been a diabetic since 2010 he is 16 years old now. He was on injections at first and he was having a ruff time with it so we decided to put him on a insulin pump for the second time and his A1c is now over 14 , if you dont work on you carb count and correcting your sugars a pump will not help you we want to take him off again but the doctor wants to keep trying. You have to want to take care of your sugars first before you make that next move.


(joe) #13

@broncos70 hi Maria,

your boy sounds like me when I was 14, in a fight for control over the idea that he has diabetes. at this point pump no pump doesn’t matter. when he’s done feeling sick and wants to take better care of himself, then again, it won’t matter because you can make shots or the pump work very well… if you want it to.

sorry to hear about the rough time you and your son have to go through. if it’s any consolation, I always did hear my parents, and after a while I decided to take care of me. Talking about it with people who understand, such as with other people with diabetes, does help. maybe he can find someone here he identifies with, or a summer camp with other kids with diabetes, really anything that eases the isolation would probably make him feel better. good luck and I hope you guys get through this and find peace.


(Daniel) #14

These comments are disturbing. Grown adults bragging about their own accomplishments instead of helping a kid. He is a new diabetic and everyone has a learning curve. I’m 25 and have been diabetic for 21 years and the number one device that changed my life was the CGM. Brought my A1C from 11 to 8 to 6 in the process of a year. Get a sensor. If you can’t afford one reach out to your local chapter of JDRF and they will.help walk you through the process of getting one subsidized. The journey is hard but you will survive because failing is not an option. Best of luck my man.


(tubamann2) #15

I was diagnosed sixty years ago. I got in the habit of writing all of my glucose test results on a chart. Each day I did at least four glucose tests and I wrote them on the chart for my doctor. When I would go to my appointments I took the pages for my doctor. He would study them and give me information for changes in exercise, meal plan, and insulin doses. My folder of charts at the doctor’s office was huge after twenty-five years. My charts were true, accurate, and complete. With all of this information for my doctor, his guidance is the reason I have no complications at this point in time. Keep honest records so your doctor will have the necessary information to give you good advise.


(Lisa) #16
  1. get a new doctor that can work with you better
  2. get an insulin pump. If your insurance doesn’t cover it, contact Minimed or any pump company and they will work with your doctor and your insurance company to get you covered.
  3. If you need help with your diet, I am a licensed dietitian and maybe I can help you. The nice thing about the pump is that you don’t have to do as much recording.
  4. I was 15 when I was diagnosed. I remember what it was like. The fact that you reached out to the community is an indication that you want to improve your health. It sucks waking up high and it is very hard to focus on school like that. Let’s get the sugars back under control so you can do better in school.

(Lisa) #17

That’s F’d up. The pump and CGM will get you under control. It shouldn’t be used as an incentive. I understand how difficult it is. Maybe, for now, make 1 positive change, be it keeping a BG log or doing a better job counting carbs. Here’s a link you can put on your desktop or phone to help you count your carbs. https://ndb.nal.usda.gov/ndb/


(sneathbupp) #18

I agree. There’s some seriously flawed “advice” in this thread. I think asking for help is great. Being criticized when you obviously know there are problems with your diabetes management isn’t really helpful. While a pump or CGM nay not be panaceas, they have been very helpful for those with busy or active lifestyles. If it isn’t possible to rely on technological help, then support and encouragement from team/family and community may go a long way. I was lucky to be diagnosed later, but may have had a tough time in my teens between work and school. Getting enough time to sleep was hard, adding injections and bg testing would have been a challenge. It’s definitely not impossible to overcome, but will take effort and determination. Support and encouragement and knowing you’re not alone will hopefully help in the long run


#19

Sorry to hear things are not going well for you, but asking for help is a great step. Is there any way you can argue (or appeal) this pump policy with your current care team? I’ve been on a pump for 20 years and the major reason I made the switch (after 20 years of 4 injections/day) was due to an unpredictable schedule. It sounds like you have a lot of activities (which is great!) and a pump sounds like a good fit. I’m baffled that any type of care team would require you to be within range for a year before approving one. This is an unrealistic policy on their part. I agree with a prior post that a CGM is a wonderful tool as well. Pump settings or injections always need tweaking and a CGM will enable you to look at a day, week or month of readings without having to write everything down. I use a dexcom g5, because I always have my phone with me anyway, and log into Clarity to look at my reports. This whole t1d thing is difficult to manage, it sounds like you’re trying, keep up the good work.


(Mardi Kamps) #20

I love this reply. I am the mother of a newly diagnosed 13 year old son. I am often feeling like i am grasping for the words to say when trying to uplift my son. I really liked the way this sounded. Its real, not coated in sugar and from the experienced heart. Thank you.
And to Matt… hang in there bud. You sound like you already have the answers to your question… i have so much respect for you and everyone affected by this disease. I admire your ability to keep such a positive outlook when faced with the long list of challenges you all face every day. Every single day. It definitely puts my complaints or my ailments into perspective. Keep being you, keep being aware of your body, and keep asking questions. You’re being proactive about your type1 management by even being on this app! You’re headed in the right direction.