Hi make name is gabby grace and I am 16. I am new to tudiabetes but I really need some advice from fellow diabetics. I use the pod and hate it. After a look at my blood sugars and my high 9.8 A1c I got approval from my doctor about switching to the minimed 523. But I will not have it for a few weeks. for now I have to deal with the pod. the story I am about to tell is one of many examples…
So during last period I got really angry and pist off. My pushin (teaching asistant/aide) was trying to ask me some question and I could not get the words out to explain it becasue I could not organize my thoughts. So she started yelling at me and I walked out and went to my resource teacher. I walked in and started crying and so she pulled me out in the hall way and askeed me to tell her what was going on. I just could not get the words out and I started yelling. Then she brought me in her room and had me sit. I got the pod alarm that means it failed (a high pitched screech.) so I ripped it off and threw it accross the room. She knew it was not my usual behavior so she tested me and I was 61. So I had some tabs and went to the nurse then. I realized what I did and I had to go explain myself to my pushin and she understood and my resource teacher understood.
The thing is I am a really happy cheerful person and when I do stuff like that I get really upset with myself even though its not my fault. This situation has happened a lot and I get sick of it not to mention teacher’s get sick of dealing with it.
I will have my minimed soon but until then what do I do?
also when I get low a lot the nurse calls my mom but all that does is get me screamed at when I get home by my mom. She does not understand that I can’t help it. I recently changed my diet to all organic natural food. The problem I have readjusted my rates with my doctor and stuff but my bg’s are all over. my mom never did any advocating for me or do anything to support my diabetes. It’s up to me to call my doctor when I have ketones and stuff. She does not understand even if I eat and bolus the right amount there is still a chance my bg can get screwed up. there is no logic/control for diabetes. She just does not get it. this is the most painful thing~ my teachers/nurse understand so why can’t my mom. She litteraly says I am not allowed to go to the nurse. she tells me to not tell my teachers if I am low and just test and have tabs. I just can’t do it. I can’t hide my blood sugars. I just can’t bring myself to do it. I told my teachers this and now they make me show them my meter. I can’t lie because I have seen where lying brings your life (bio dad). Anyway any advice would me very helpful. I am in great need of support right now.
I am sorry that you are not getting any support from your mother Gabby. I agree that you shouldn’t lie to your teachers. Having them know that you are low will also help them understand when things are not right with you. I would try to test as often as you can so you can try to figure out that you are going low before it hits. Can you ask your doctor to talk to your mother and explain to her how many things screw up our BS and it isn’t all about food - hormones, weather, stress to name a few!
Since you are 16, you are probably not in a position to make changes to your pump yourself, but Pumping Insulin by John Walsh will give you a lot of tips how to use a pump successfully. If you are able to get your hands on that, it is like the pumper’s Bible! Another good book is Think Like a Pancreas by Gary Scheiner, that is one is about diabetes stuff in general and not specifically about pumping. Maybe your mother should read one also!
TuDiabetes is a great place to get support. We have other teens here also.
What is your mom’s issue? Does she think that you should just be treating it “on the fly” where you are in the classroom instead of going to the nurse? I’d sort of agree with that. The nurse in our school was a long way away from many of the classrooms and it’s always a good idea to be “ready for action” whereever you are? While it’s a drag to lug all the junk along with you, it’s a good habit to get into and will be liberating as you get older and want to do other activities?
Also, if you are bolusing an amount and your numbers are “off” it may not be the right amount? Doctors are nice and all that but they don’t “know” everything and sometimes I think that learning how to figure out your own numbers and rates and ratios can be very helpful. I agree with Kelly that it would be totally worth your time to get either of those two books to read as both of them are owner’s manuals to figuring out how to figure stuff out. Both of them say “talk to your doctor” but, if you read them, you will have a great foundation to get things straightened out, whatever device you have?
Gabby, I remember way way back when I was diabetic and 16, of course no pumps or glucometers back then. Anyway, it sucked! That being said, are you able to feel the changes when you are dropping, when your blood sugar is becoming low? Can you tell and have permission to pop a glucose tab to head off the low until you can get to a glucometer and double check? I am still able to feel most of the time when my sugars are falling but sometimes it (the lows and highs too)really messes with your attitude - and it is not your fault, it’s the nature of the insulin dependent diabetic beast! I think the more your friends/classmates/teachers are aware of your mood changes that may be related to your blood sugar changes, it would be beneficial for you - kind of a backup alarm system so to speak, and maybe allowing you to remain more in control of your diabetes instead of it controlling you. Of course, having a pump that you can trust would help, so lets hope that you are able to get the MM pump set up quickly, and that it begins to allow you to feel more comfortable with pumping insulin again. Would you be able to look into using a CGMS? That may be a big help if it would be possible for you to get one.
You’ve received some good advice here. Good for for you for knowing how to reach out for support! I especially like the responses from Kelly and AR.
It’s hard explaining diabetes difficulties to non-diabetics. The most empathetic always get it but most non-Ds don’t realize that we manage our diabetes, a 24/7 occupation, and seek a wider life too.
I have the exact same thing happen to me when I go low (in that I have trouble getting my words out and can’t organize my thoughts). I am a 33 year-old type 1. It is beyond frustrating to be at work, trying to have a conversation with someone, and my brain just goes “offline” (that’s how I like to describe it). Sometimes, because my brain isn’t working properly, I don’t know what I need to do (i.e., get a glucotab or drink some juice). This scares me a lot. Keep in mind that even if your meter said you were 61, you may have been even lower, as it can take 15 minutes for blood sugar changes to show up in the blood of your fingertips AND meters can be “off” by as much as 20 percent in either direction. So you could have easily been in the 50s, which would explain your behavior. I too exhibit behaviors when I’m low that I would not normally exhibit.
You are dead on that even if you eat an exact amount of carbs and bolus an EXACT amount of insulin, your blood sugar can still go wacky. This will happen even more at your age because your fluctuating hormones have a HUGE impact on your BGs. When I was a teen, my BGs were ALL OVER THE PLACE. So, your I:C ratio may be right one day, and the next day it will be completely off because your hormones have fluctuated. All you can do is log your data and respond to each blood sugar test (either by correcting or eating something). It sucks, I know. Some things will improve once you’re around 20 or 21, as your hormones will settle down a bit and things will get a tad more consistent. HOWEVER, T1 diabetes is a beast and even now, I can do the exact same thing two days in a row and get two drastically different after-meal readings. There are just SO MANY THINGS aside from food that affect blood sugar levels, including weather, stress, hormonal changes, exercise, etc. It is IMPOSSIBLE to control for all those things.
Your instinct is right in that you should not lie about your blood sugar levels. Your teachers/aides/nurse need to know what your blood sugars are so that they can help you. It is wrong of your mom to tell you to lie. You should, however, have everything you need with you at all times (i.e., glucotabs, meter, etc). You should not have to go to a nurses office or locker to get what you need because that can result in wasting valuable time.
As for your mom not being supportive - yes, that does suck, but in some ways, it is a good thing. You’re learning how to manage a really hard disease that you have to live with for the rest of your life. Because you’re learning this management now, you will be all set by the time you’re ready to head out to live on your own. Look at it as a challenge and great learning opportunity! You are going to know so many things by the time you’re a full-fledged adult and that’s going to make other challenges in life seem a lot easier. Believe me, I was there once too
Now here is what I want you to do: Print out all of our responses and bring them to your mother. She needs to see from some other folks living with type 1 diabetes that your experience is very real and not something you can control by simply pushing some buttons on your pump. Yes, getting a new pump will help (I’m not a fan of the Omnipod, and I think you’ll have better luck with the Minimed), but this disease is a giant pain in the butt. It plays by no rules and even those of us who spend the better part of our day going through our data and trying to fix things often fail. You can do EVERYTHING correctly and still end up with some really wacky results. She needs to know that when this happens it is the disease, not you, that should be blamed.
At 16 you are in a difficult place… you also happen to be a diabetic too! Every single one of us, has been in the place you are now…
WE DO THE VERY BEST WE CAN… and sometimes, we fail anyway. You have lots of different things going on, and different ways you can figure them out. being in a DARK place when low is nothing new… that’s insanely common for many, many people . Some get giggley, but many of us become Neanderthals, cave people when we start the “free fall”.
Different parts of your brain are literally shutting down as your bloodstream has less and less glucose in it. Too little and your ability to walk… to speak whole sentences… to make any sense at all goes, bye-bye! If you feel embarrassed enough when things happen, seek out those teachers, and speak to them privately… nothing to be ashamed of at all. Simply let them know you are embarrassed for those actions/words… I think you will be happily surprised by their reaction.
If you are in charge of making these calls, then there is one you need to make… call your doctor and ask to speak to his/her nurse. Explain that you’re having real problems with your mom and you’d like a referral to talk with someone to help you figure this DIABETES issues out whether with her, or solo.
There are hundreds of us here. All of us know real well the struggle you have because its what we do too! With our boyfriends, wives, lovers, friends, girlfriends, and family. And always with ourselves… too. Some people have weird freakin ideas about what we SHOULD do. And its easy for them, Whatever that dumb idea, the dead-wrong belief gives them comfort as long as they can believe “control is easy” if you just only do “X”… which seems really easy.
UNTIL you are the one actually doing “X”… But unless they are in the mud with you, doing what you do every single day… it is not as simple as they pretend it to be. Its complex, and hard to juggle these buzzing chainsaws. Been doing it long before you were born. I like it no more than you do… nobody LOVES this stuff… nobody.
Now demanding your meter as a teacher is something in your place I’d have concerns about. But lets try these issues one at a time, ok? Where do you want to start the discussions… with mom… your doctors nurse… your guidence counselor? Where do you wish to start? No reason at 16 you should have to understand it all, anymore than anybody else does. Lets find someone to help figure it out locally who you can see face to face
Gabby,
I’m SO glad you’re the one managing yourself. I know it’s a pain. But you are doing what needs to be done. You asked what do you do til you get the minimed.
Use the time to learn.
Get the books that have been suggested.
Test yourself to find out what parts of your breakfast do to your BG. Become a researcher of yourself.
And when you’re not at school, take just a part of your lunch and test at an hour, test at 2 hours, and find out where the amount of insulin you’re giving is putting your blood sugar at different times. I:C ratios so change at different times of the day. They certainly change across the hormonal cycle, too!
See if you can research yourself some more. And write it all down so you can go over it and get more ideas.
If the nurse at your school knew what she elicits when she calls your mom, she’d probably reserve what she has to say for a face-to-face and talk with you first to figure out what would help and not hurt.
You’re not the only one who goes grouchy when low. There’s probably 20,000 people on here who get grouchy when low. And I agree with you all the way - first of all treat yourself, and don’t hide it. And if you’re active, then a glucose tablet or half tablet is sure helpful. Keep them with you and test test test. Your meter is your friend. And again, don’t hide it.
Moms sometimes don’t know HOW to support or help.
If you can think of something she can do to help, then you can tell her what she can do when the two of you are together.
But make it a time when you’re out having a good time, not during a stress-time!
You’re a super person to be on here and we’re all pulling for you.
