I am new to the community and thank you so much for having me. I was just reading through some post. I must say it is comforting to know that other people out there have been controlling their numbers for many years with success, my head is spinning with confusion and self doubt. Not just on one topic, but many topics since reading some posts. I think being here is going to be really good for my entire family. My son was diagnosed as type 1 almost three years ago. He will be six in a little over a month. Since diagnosis my wife and I have run through the whole range of emotions. Some days we have the feelings of, we got this, and others we wonder if we can do anything right. Some days we have feelings of guilt that we have to put our baby through this! There are many days at work i will spend hours thinking about his future and whether we could be doing something wrong that could potentially harm him later in his life unknowingly, when I am supposed to be focus on my work. I worry so much. And I think that is bad for my health. I’m not sure that my heart can handle it. The sinking feeling that seems to come from nowhere when I think about what his life will be like in 10, 20, or 30 years. When i read about people getting depressed and not wanting to do it anymore after feeling burnt out. Then reading the post on here where people are talking about bolusing for proteins and fat. Wait! WHAT? There is so much to learn that I feel confused and feel like I will never figure out everything that I need to in order to make sure he is okay now and later. There are also feelings of being down right ignorant when I read about people hacking their dexies (dexcom) in order to get the information they need to manage to the best of their abilities. How did anybody ever figure this out? I am apparently not as tech savvy as I once thought. I am in a group on Facebook known as CGM in the cloud. Once again, head spinning. I am sorry for the length of this post, and I’m not even sure if anyone read it. But at least I am getting some stuff out of my head. I think I could use someone to talk to. I am hopeful that I will not be judge if I ask a question that turns out to be stupid in someone else’s eyes. CGM in the cloud is not that place for me. Thank you again for having me. I think I will learn a lot from this page. And maybe one day I’ll be giving advice to some newbie that feels overwhelmed.
Hi @BradB, welcome to TuDiabetes! You’ll learn a lot here.
You will figure it out. Nobody learnt this in one day. It’s a learning process that never ends.
Of course not! We’ve been there too. None of us was born knowing everything about diabetes
former CWD, now PWD who made it. and knows lots of others who made it too!!!
one advice i want to give you upfront: dont beat yourself up (easier said than done).
i understand the fear of complications totally, but put it into perspective: the trials done studying outcome for diabetics were mostly done back in the days where tools were not as good as today. most PWD who get complications nowadays were dxd when there were no pumps, no CGMs, and sometimes even no BG testing at home. And most of those turned out welll!
so the probability of your child developing complications is not the main thing you should worry about!
worry about your and your wifes mental health, and your childs hapiness!
and remember: if he ever develops complications, it is NOT your fault, it will always be diabetes that put you there in the first place!
so breathe, do what you have been doing well for the past three years (you seem to be well informed) and enjoy your life as a family!
Welcome to the site and I’m sure you will find it useful and have many responses. I’m sorry you have to go through this, but know that this site means you have people and resources and a place to vent. I’m looking FORWARD to what the future holds, as so much has changed in the last five years. This is not a disability for most of us and life can be normal at times. There are many folks out there who need to take special care on stuff, we are not alone…
Thank you. I will convey this message to my wife. I think she could benefit. I worry a lot about her too. The school almost sent her into a nervous breakdown recently by not following our 504. My son is a very happy boy considering. Mist days yoiu would have no clue of his condition. Always running around and playing. Even when his numbers are out of range. That’s kind of a scary part for us. He is very very unaware most of the time. There has only been a handful of times where he has come to us as a result of not feeling right. He could be at 50 and still have to continuously tell him to sit and relax. Thank goodness for Dexcom!!
P.S. it is really comforting and nice to have someone other than my wife that understands our day to day
i think peer to peer support is the best support you can get!!!
pm me if you need more help, but i really think you are doing an awesome job!!!
and kids are like that, and that is perfect! it is his job to play and have fun, and you guys support him!
i am a counselor for dcamp, and i cannot understand how kids cannot hear their pump ring, but they always manage to ignore it!!!
dont let diabetes define your family and day to day life, that would be way too sad and overwhelming. live with it, but there is stuff more important than that!
and as @mskdka said, the future is bright! look forward to it, your son will gain independence and learn a lot, which will make it easier for you guys too!!!
Welcome to TuDiabetes, @BradB! I’ve discovered over the long time I’ve lived with T1D that peer support is essential to successfully treating diabetes and holding on to your sanity! People living with diabetes have an intimate knowledge of tips, tricks, and coping skills that the doctors and other health care professionals are not aware of. Like you, we live with diabetes 8,760 hours each year.
Do not be overwhelmed with the accumulated knowledge of this community. There is a lot to know and learning a little each day adds up to a big heap of D-knowledge. You have many years to soak this up; your child has a lifetime to learn! Just try to learn a little each day. Things like insulin dosing for fat and protein is not something everyone finds useful and if you’re interested, I’d be happy to explain in simple terms.
But I’d concentrate on other things, like understanding how important pre-bolusing is. It’s not useful, however, for 100% of people with diabetes. Just be aware that it’s a potent and often under-utilized tool.
Please ask your questions! We have many parents of young T1Ds and I’m certain they will pitch in to help you.
As for being overwhelmed with data, we’ve each been there. The key to coping is not to try and figure everything out at once. In the first place, you can’t; the brain will only absorb so much before it gets saturated and demands a timeout. In the second place, you don’t need to; diabetes is going to be here for a long time and so are you—neither of you is going anywhere any time soon. Learn a thing or two every day. It will come into focus. Truly! As I said, we’ve all been down that road. As a very wise person once said, “diabetes is a marathon, not a sprint.”
As for the depression, we’ve all been there too. It’s a sometime thing, comes and goes. The more knowledgeable and comfortable you become with managing the beast, the less it comes and the more it goes. Just requires time and patience. (Actually that last sentence applies to just about every aspect of living with diabetes, come to think of it ).
And as far as where he will be in 20 or 30 years, that will depend on where he wants to be then. Diabetes doesn’t have to stop him from going where he wants to go. If he wants to be a professional athlete, and has the talent, he can do that. Examples abound. If he wants to be a doctor, he can do that too. Examples abound. You get the idea—diabetes will only stop him if he chooses to let it.
The Joslin Diabetes Center awards medals to people who have lived with diabetes for 50 or 75 years, and not too long ago they awarded their first 80 year medal. The future is what you choose it to be.
Anyway, you’ve come to the right place; we’re glad you found us. Welcome to the family!
Thank you all so much! I think I love it here already! My lesson for the day is not to focus on the negatives that may happen later on in his life, because they may never happen. Then I would have put stress on my heart and nerves for no reason. I will keep it in the back of my mind to help keep motivated to do all I can. It’s hard though when i think so darn much. My grandma was a diabetic and lost both legs. Granted that was in like 1988. Maybe I just need to stay away from all the negative stuff I have read about in the last 3 years. Focus on the positives, like my amazing family. Things I’m grateful for. This group! My parents. My wife. Being grateful for the times we live in where I have so many resources and tools, as opposed to in 1988. Being grateful that bub has an awesome big sister who is oh so understanding of EVERYTHING! My health. My job for providing me with really good insurance and financial stability. I have to let this whole nightscout thing go at least for the time being. I am technology literate, but I have been humbled to say the least by CGM in the Cloud. Those guys must be computer programmers or something. Sorry for carrying on. This is the first time I have asked for help other than CGM in the Cloud though. It really is comforting to know that people I don’t even really know care enough to listen. Thank you again. I think I am going to introduce my wife to this community of people. She could really use it maybe even more so than me. I’ll stop rambling. Thank you for listening.
Welcome to TUDiabetes. We do get it. So a bit about me before you hear my advice.
I was Dx’d as a T1 on my 17th birthday. I started in a time with no pumps and no blood testing at home. I have not always been a model patient and I have never felt bad about it. Over the years I have changed a lot, sometimes I have had better control and some days less control.
Now here is the advice. You do not need to eat the whole apple in one bite. Life gets easier as you go along. Remember the day you first drove a car? I bet you are better at it today. You, your child and spouse will be tweer tomorrow than you were today. Take little bites.
T1 43 years still leanring.
My 2 cents:
My daughter was dxd a little over 8 years ago. At times, I’m still drowning in confusion. There’s always something more/new to learn. It’s exhausting, time-consuming & frustrating. I’ll be honest. It makes me angry when I see comments about how it gets easier. That’s BS. To quote my favorite blogger (also my friend, & mom to 3 kids with T1), “It doesn’t get any easier. You get better.” The more you learn, particularly from the experiences of others, the better you’ll be able to deal with this. What works for them may not work for your son, but store away the info anyway. You never know when you might need it. Read, visit forums, attend conferences/workshops. My D library started with the Pink Panther book & grew very fast. Gary Scheiner’s Think Like a Pancreas (Gary also offers online classes at Type 1 U. They cover the basics very well), Dr Stephen Ponder’s Sugar Surfing (Check out his Facebook page & website to locate workshop locations. They’re free.), &
Type 1 Diabetes: A Guide for Children, Adolescents, Young Adults–and Their Caregivers by Ragnar Hanas are my go-to references. Using Insulin & Pumping Insulin by John Walsh are also in my collection. The Children With Diabetes foundation hosts Friends for Life in Florida every summer. It’s a gathering of families, children & adults with T1. It’s still on my wish list, but parents I know who have attended says it’s an amazing experience. One of the regulars here, @Richard157, has been a guest speaker.
Focus on the positive. It’s the only way for a parent to stay somewhat sane. Also, kids are so instinctive. You may think you can hide your thoughts & fears, but they read you better than you realize. He will pick up on your attitude & emotions. Make sure they’re positive, so his will be too. Every day is a new start. Learn from your mistakes & your successes, & keep moving forward.
No, scratch that. +1,000,000. One of the best pieces of advice you will find here or anywhere else.
Hello @BradB, I like your introduction, and it is a good thing that you have joined us here. If children recently diagnosed receive good care, and their diabetes management remains good in the future, they have an excellent chance of having a long, healthy lifetime.
I was diagnosed in 1945, when I was 6. There was no device for testing my blood sugar for my first 40 years, and the only insulin was a slow acting insulin taken from the bodies of cows and pigs. There was no A1c testing for my first 30+ years… I did not know about the possible diabetes complications until 24 years after being diagnosed.
Despite my early years, I have now lived 72 years with type 1 diabetes, and I do not have any serious diabetes complications. Some neuropathy, but not bad enough that I need medication for it.
I have been online since 2006, learning from my fellow type 1 friends. I offer information about my past to give inspiration and hope for the future.
I hope that your son will adjust to his new routine without any major problems. Good luck to you and your family.
Welcome. You have found a great site.
I was diagnose at 10 in 1962. 55 years.
The world for diabetics changes, thank goodness, all the time.
Your child needs supportive fearless parents. That’s how I made it this far. I was never refused any activity, which made my childhood fun, NOT ALL ABOUT BEING DIABETIC. Just about being a child, having fun, growing and learning. Happy.
Yes it does become tiresome. There is also information overload. He needs to understand his condition, have the correct tools, and read his body. If he finds a path then it no longer takes him to the right place, look for another path. It is a never ending journey.
Be strong, supportive. Teach him. Let him fly. My parents made a world of difference for me.
I am a wife of a type 1 diabetic. (We live in Australia) Phil my husband has had it for 27 years.
I want to let you know that despite the crap of diabeties, your son can grow up to be anyone/anything he wants to be. He will grow strong with this disease, but there will be ups and downs- especially through teenage years (which my husband bitterly regrets).
Never judge him for having “bad” sugars, just understand it is so difficult to maintain any kind of normal. Hormones affect sugars as do food, sickness, sleep, hell- anything.
Dont ever make it his fault and I’m sure those teenage years will be easier on him knowing he isn’t being judge by the people who love him.
Phil and I have 3 children (13, 10 and 6) who are all well educated on type one diabetes and they tell anyone who will listen about it .
Phil travels the world for his job, working for a company that manufactures high speed video cameras (think slow motion). He blows up cools stuff, sees cars crash and sets up all the testing, shoots marshmallows into wine glasses at 300mph etc. he has his dream job
Your son can be anyone he wants to be. The road will not be easy. But he can do it, and he will look back at you with love appreciation, just like my husband does his parents
Thank you everyone for the kind words, inspiration, and a little confidence boost. I hopeful his condition will never be a limitaion for him. It definitely hasn’t slowed him down thus far. I enjoyed hearing your stories of success over many years. That has helped me already in my mind. I try really hard not to show any concern when I am around him. I don’t think he is aware of the seriousness of it all, and im not sure whether I should approach him about it and when. I dont think i would like it if he were to hear it from somebody else first. We’ll have to figure that out later. Now isn’t the time. I do have a question but I think I’ll start a new thread so maybe more people will see it. It’s about priming pump tubing. I will be checking out some of the books that have been mentioned. I have a story about the pink panther book that goes along with our diagnosis and our original endo. I’ll save that though. I’m sure you guys aren’t interested in my stories. Has anyone heard of a book called Bright Spots and Landmines. I am going to purchase it. I’m not a real big reader, but I may start to read more because I have a lot to learn. And books will be a great resource. I’m just curious if anyone has read it and has an opinion on it. Thank you again everyone who took the time to reply. I am inspired, and I will be better prepared to inspire him into greatness.
I got the free download from Diatribe but I haven’t had time to read it yet. I’m not sure if my daughter has read it yet. The excerpts Diatribe has posted on Facebook look good though.
I’ve read much of it and I’m a fan of author Adam Brown’s diabetes style. I share his take on the utility of carb-limitations for treating diabetes. I’ve been reading the content on the DiaTribe.org website for several years.
Some people don’t like to get into the nitty gritty of diabetes tactics since they think it detracts from the quality of their life. I choose to learn and refine these tactics because I believe they actually make life easier in the long run. I see diabetes as a mortal enemy and I think it’s unwise to turn one’s back on diabetes. I fully respect the power that diabetes exerts over my life and I do my best to defeat it every day.
This is a basic philosophical choice that is neither right nor wrong. Other people make different choices and also successfully live with diabetes.
What I’m trying to say, there are many paths to living well with diabetes. You need to seek out the path that best suits you and your son and remember that change is the only constant in life and diabetes. I hope that you continue to find this community helpful to you!
I’m a big fan of Diatribe.
One difference in being the parent of a T1 child is that we’re charged with teaching our children to live well & stay healthy. I’ve felt from the beginning that if i was to teach my daughter, it would require learning as much as I could. Everything I do as a parent is done with the realization that she is watching & hopefully, eventually emulating my actions. So far, it’s working, but she’ll be transferring from the local community college (& under my watchful eye) & to a university in another state next year. My fingers are crossed!
I had hoped reading Adam’s book might make a bigger impression on her since he’s so young. It’s much cooler than getting the same advice from Mom.
I’m glad you chose to open up and share. We DO want to hear your stories, so tell us about the Pink Panther book!
I have three children, my middle child, Caleb, was dxd when he was 3. He is now 14.
There are lots of things I forget. The various levels of heartache and frustration that diabetes causes is not something I think I’ll ever forget. It’s hard. And it’s really hard when your child is young. It’s okay to be mad and frustrated - denying those feelings probably wouldn’t be healthy. But, as you’ve done, it’s important to balance that with feelings of joy and appreciation.
It’s been more than ten years since Caleb was diagnosed and he’s been through preschool, elementary school, middle school and is now in high school. We’ve been through the ringer with school administration and 504 plans - we’ve seen it work beautifully and seen it fail miserably requiring us to take legal action. Thankfully, there are great resources (ADA’s Safe at School program) to help us advocate when we need to, and laws that protect our children.
The uncertainty of Caleb’s future was a big concern for me when he was diagnosed. I was glad to have people in the public eye that we could look to for comfort and inspiration that things would be okay. Moreso, though, I made a lot of online connections with people who are real life examples of success with diabetes (stark contrasts to the lives depicted in the out of date library books I unfortunately exposed myself to). I wouldn’t say I don’t think about the impact of diabetes on Caleb’s future health - I do and it’s why we work hard to keep his bg in range. But I don’t worry about it. I’m happy we have so many great tools to help minimize the burden of care and ensure a healthy and long future for him.