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In honor of World Diabetes Day, what is a piece of advice you would share with someone who is newly diagnosed with T1D, or a parent of a newly diagnosed child?
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If you are newly diagnosed, most articles contain something like “People with Type 1 can manage the disease to live healthy, long lives…” and I don’t know about you, but I grew to REALLY doubt that phrase strictly because it’s the first thing people tell you about it… My thought was “If that was really true, why would you have to tell me about it so directly?” If you are feeling similar skepticism, I can now say having been doing this for a few years that it is definitely manageable, they were right along, you got this!
Treat T1D like a pet rattle snake. You need to tend it, but it might still bite you.
Iāve lived with T1D for 49 years itās an extremely survivable disease as long as you properly maintain the condition. With all of the positive advancements in tech the future looks bright which in turn makes the managing aspect that much easier to say the least. Like anything in life it all comes down to how you handle and view things. Chin up, future advancements in diabetes research looks extremely promising.
A little time will make you a diabetic expert! Give yourself that timeā¦. diabetes is only a part of who you are, not all you areā¦..
Learn everything you can and find a support group,
Get connected & curious if you aren’t naturally. Most of what you need now is support and education. There has never been a better time to be a diabetic!! Lots of great technology, communities, food options & information….
A new T1D diagnosis may feel quite scary, however technologies and more accessible information & communities make living with it easier and easier as time goes on. The promise of additional improvements to care and quality of life for diabetics is even more exciting!
Trust that it will get easier. The amount of information you need to absorb to keep yourself on an even keel seems so overwhelming at first that it’s hard to imagine that you will ever return to your normal life, but you will. At some point, you’ll find that managing your diabetes is a habit that recedes into the background so you can focus again on the things that mattered to you before your diagnosis.
Tell your kid you will never be mad at them about their diabetes management and when they make a mistake, accept it calmly and work on correcting it. When your kid turns 21 turn them loose. It is no longer your business to ask about their health. If they have confidence in you they will volunteer it.
As a T1D parent I would encourage you to seek out one other T1D parent who you can have on āspeed dialā. While this illness is very individual, having the wisdom and support of an āin the knowā friend can make all the difference.
Every single comment here is perfect. My advice? Read here…..
Learn as much as you can about what it takes to well-manage glucose levels and implement the needed life-style changes to achieve that control. Two books that were pivotal in my understanding of diabetes were Gary Scheiner’s “Think Like a Pancreas” and Dr Richard Bernstein’s “Diabetes Solution”. I read both about 20 years ago but have been living with Type 1 since 1976. I’ve been able to maintain good control and prevent the progression of beginning neuropathy and retinopathy by implementing what I learned in those books (although I never went as low-carb as advocated by Dr Bernstein, I did reduce and limit my daily carb intake which is currently at 110 total carb grams per day.) My last A1c was 5.7 due to my lifestyle and the use of the Tandem T:slim X2 pump with Control IQ. Living well with diabetes is possible!
But we who are the older troopers are not the ones that a newly diagnosed person wants to hear (mine was 1963 and I am also free of those severe complications). They want to not feel threatened so we just tell them that this is now your life (as if you lost a leg in a war), so before you even imagine that this represents the end of your life do some serious learning… I mean you didn’t just try driving a car before you learned how to use it, right? ā how to move, how to consider your surroundings FIRST.
It is kind of like that first day of a new year in a new school in a new town ā well… THERE YOU ARE. It may be scary, maybe you feel alone & different, don’t know where that thing is or even who to ask. Being told that you have Type 1 Diabetes is a lot like that… and “there you are”, kid! So how are you going to manage the second day, the next week, and so forth? Just like you have managed everything else in your life, you just pay attention, adapt a little here & a little there, seek out whatever level of help you need or decide you want, absorb this into what you’ve learned to get where you were yesterday. Today will just be another yesterday, another “well, last year I…”, and so forth.
It’s just different but all those other things that have gotten you to now are every other ‘different thing’ you survived, accommodated, changed and you have grown. And you will keep growing! :ā)
No diagnosis of immediate threat. But the most important one you will ever get because IT IS YOUR ENTIRE LIFE now. Consider: caught in the rain you donāt just site there ā you seek shelter, help, a raincoatā¦ same thing!
Check with your dr about all the wonderful ways you can stay active and be aware of you Blood sugar. We have so many more ways to do that.
Go to an Endocrinologist, used a CDE. Carbs are your ENEMY. Read all food labels and use the Carb. numbers not the sugar numbers. Watch when you exercise, be sure your numbers are around 140-160 mg/dl before starting. If you are above, your numbers could climb, not fall. Start your Diabetes adventure using an Insulin pump that uses a CGMS. Best way to start.
NEVER go to sleep without knowing your Glucose numbers.
Don’t be Young and Dumb. This why you can live a long lifetime.
Telling someone that “carbs are your enemy” is likely to ruin their life and squash its joy. Suggest, rather, that they see carbs like the water in a swimming pool, the rain from the sky, the air you breathe now. They are just different things you live with, and ALL of them require that you, kid, will have to learn enough to live with them. and, yeah, that can be scary sometimes, or make you angry, but nobody wants to be that way all the time. See joy in learning something new, in making new buddies, in knowing how to do things that nobody else in your class does. Strive for getting an “A” grade by learning from any mistakes or lack of understanding ā that is always something to look forward to!
I too would disagree with “CARBS are your enemy.” Yes, they make your glucose number higher, but so does protein. And we have insulin to manage that. I would suggest that not knowing how to use your insulin or not educating yourself is the real enemy.
1. Get a Dexcom!
2. Keep glucose packets/tablets on you at all time, some next to your bed, some in your car, some in your partners jacket, etc..
3. Research what T1D is on your own. I used Pinterest when I was first diagnosed to see what people did to help manage their T1D, thereās a lot of peoples personal stories, those were more helpful than the endos, I wanted to hear from someone who has it, you know? Thereās also a lot of funny things on there that make you feel like you are not alone.
Only one piece of advice? Educate yourself and start each day doing the best you can.
My advice exactly. Education helps incredibly. After you get the basics down you can find CME (continuing medical education) at regular diabetic websites that can be quite helpful as they are directed towards the professionals or look toward pubmed.gov the national library of medicine for endocrinology journals. They can help with your individual problems.
Juicebox podcast. Period. If your doctor is not providing good care, find one who will. It can determine so much of the rest of your life.
Try and stay as close to keto as you can. Make it fun- try new recipes, reach out to new people, get cool accessories.
Donāt stress. Youāre in it for the long term.
Living with T1DM x 57 years, my advice is all your dreams and goals are reachable. Diabetes is not a reason to not do something.
All these comments are great and given together they say a theme: “Adapt to this new piece of your puzzle” You have three choices, 1 do nothing and you will have a couple miserable years before you die,
2 half heartedly manage your T1D and you’ll bump along with a reasonably short life or
3 take control, learn, learn and learn some more and take control. If you manage T1D it will not manage you, you will manage it. I’ve had this over 61 years and more active than most my age. I eventually chose to manage it. With reasonable math skills, a temperament to learn, an endocrinologist with care and understanding, a CDE who can teach you the ropes, and lastly self discipline you can beat this SOB! It is overwhelming at the start. Many T1Ders do quite well without all the technology, I’ve chosen to use most of the bells and whistles out there. Dexcom G6 insulin pump/CGM, IPhone and IWatch with the Dexcom App. My blood sugar is in my sites with a twist of my wrist. Absolute life changer!
Somewhere around 140 people have answered this question, we are all saying the same thing in our own words.
This is your burden and God doesn’t give anyone more than they can handle! My mother and wife have pulled me out of more Insulin Reactions than I can count (100’s if not 1,000’s). I’ve been pinned down by 4+ EMT’s countless times administering glucagon. My poor management history began to subside 1st with short and long acting insulin, then more so with blood glucose monitors, then even better with insulin pumps. The best has been the CGM (a GODSEND for me).
This is your burden, manage it. Find a mentor in combination with a CDE. This mentor should have a skill set to teach you to manage yourself.
Lean on your family and friends hard, you’ll need them.
Exercise is your friend and your enemy. After exercise you have a 24 hour window where you’ll have better blood sugars than without. However, too much exercise without carbohydrates to manage the low blood sugars can cause real big time problems. You’ll receive plenty of guidance on this.
Lastly is your diet. If you are fat – loose it. Less than 25% body weight in fat. Do it now. Pizza, steak, pork, any high fat meals, drop them. You’ll learn to understand what high fat meals do to your insulin absorption. One thing the gov’t got right is nutritional labeling – understand it inside and out. Get yourself a food scale with carbohydrate measurement. You will become very good at counting carbs.
Anyone can learn this, your burden is the desire to know and understand your actions have real and somewhat immediate consequences.
Good luck
ps. One of these 140+ comments you hopefully liked. Don’t be afraid to reach out to any of us. We are here to help each other with our own experiences.
PPS “Diabetes – where everyday is a science experiment”
Blood sugar level is simply a number by which to make your next decision
The temperature of life was never enough to embroil much less boil over the soul. Adamantine beauty lies therein.
Be patient, keep learning and get in touch with TCOYD.
(Take care of your diabetes)
Wonderful and helpful.
If you can afford the latest tools (insulin pump and CGM) to help control your glucose levels – Get them. They will go a long way in helping to avoid (or delay) many of the long term possible consequences of having T1D.
It’s a fight, but not a losing fight. Stay focus to what your body is telling you before and after you eat and before and after you take medications. Start your dose low and then adjust as you go. Sometimes doctors just throw a prescription at you and tell you to diet and take insulin and that’s it. There’s a lot more to it than that. Watch how your body reacts to exercises, dancing, cleaning, gardening, biking, running, walking, hiking, swimming, etc. heck even house cleaning can affect your blood sugars to drop. What works for me is that after I eat, I do an activity, and I don’t need to take as much insulin or nothing at all. My basal covers me with exercising. Don’t trust your CGM when you are going to dose insulin, trust your meter. CGMs are sometimes way wrong and you can either over dose or under dose. Always have a bottled juice on your nightstand. Drink lots of water, especially if your blood sugars are high. Pray and relax. You got this.
You will be able to do this. There are many resources available and many advancements in treatments have been made.
Read up on it as much as you can
Walk away from any medical person who attempts to scare or threaten you into doing what they ask. A T1D is going to change your life and you will survive.
If youāre older, confirm whether youāre T1 or T2, get a GAD test; then learn as much as you can about the disease and be your own advocate, particularly if your doc is not T1. Let the doc know he/she is an essential advisor, but youāre in the driverās seat. You live with the disease, the doc sees you for 15 minutes every three months at most.
Two things that go together:
1. Adopt a low-carb lifestyle. While there are complex reasons that people develop T1D it is, at the most basic level, an intolerance to carbohydrates. Reduce the volume of carbs, and you can reduce your bolus, which reduces the likelihood you will be on a roller-coaster. (This is called “the law of small numbers”.)
ALSO… with SO many people (in the US anyway) presenting with SO many dietary distinctions, saying about your child (or yourself), “I just want to eat like a normal (person/kid)” is a false construct. That statement says to me, “I don’t want to work very hard to live my (or for my child to live her/his) best life.” Okay… if that’s what you REALLY want…
2. If you DO adopt a low-carb lifestyle, make it a FULL FAMILY change. High-carb foods are tasty, but offer little in the way of nutrition or sustenance. “Carbohydrate” is NOT an essential nutrient (where protein and fat are, for example). Teach your family that good nutrition and good health is for everyone, not just for the individual who developed diabetes.
(FYI, the highs and lows — the roller coaster — contribute at least as much to diabetes complications as plain old highs do. ALSO… while the brain DOES need some glucose to function (and glucose is what result from carb-based meals), and you will find endocrinologists who INSIST on carbs for a child to thrive, this is an ignorant and VERY old-school approach.)
– T1D dx: October 1970
– Retinal damage, carpal tunnel, and frozen shoulder procedures btwn 2000 and 2015.
– Low-carb life since March 2016.
– Current A1c: 5.4%
– ZERO additional complications since 3/2016.
– #GRIT
TID dx – April 1979
I am currently living with frozen shoulders for almost two years now. Physiotherapist said there’s nothing they can do, as shoulders are “fuzed” with only 40% movement. How long did you live with your frozen shoulder, and what was the surgery/recovery like? It did not come back?
I had/have frozen shoulders. I had surgery on my right shoulder around 2000, and my left shoulder around 2010. The 2000 surgery went well, with long physical therapy. I never was fully recovered. But, at least I could use it. After about 12 years, I was back to pre-2000 on that shoulder.
My left shoulder, 2010, turned out worse after surgery. I was in terrible pain for several years, with long-term physical therapy. It is improved now, but still partially frozen.
Both my shoulders were frozen for 6 years. I had a cortisone shot in each (at different times). The cortisone put my into ketoacidosis but it did relieve a lot of the pain for the remaining years. And they did āunfreezeā on their own and I have good range of motion now.
Donāt expect perfection! You have some leeway but you have to figure out where and how much. Try to live a regular life in spite of the diabetes. Itāll keep you much happier.. I have done the above for 63 years of diabetes and am still doing well. Itās doable!
Give yourself grace. Really. Be kind to yourself. Strong long-term care takes an incredible amount of self-advocacy with your care team, so it’s important to keep your emotional batteries charged so that you’re able to be in the driver’s seat to get the best available guidance and support.
Try not to let the endocrinologist’s judgement bother you to the core. You’re doing the best you can, and they are there to help you achieve that.
Get a Dexcom as soon as possible
You are not alone. Youāre not the only one going through this. Look for social media groups to join to gain support and share experiences. Donāt ever think you are āfailing.ā This isnāt a pass or fail type of disease.. youāll have your good days and youāll have your fair share of bad ones too. Donāt let the bad days get you down. Each day is a new day to reset.
Diabetes is a disease you can live with. The pump and CGM are crucial to good control and will help you or your child avoid complications from the Diabetes. That being said you have to advocate for yourself in order to get most health Insurance companies to pay for anything other than syringes. It takes a lot of time to jump through all the hoops and to get your Doc to document and send all the paperwork for the Prior Authorization. Don’t give up it is worth the effort to get the pump and CGM. Even with insurance prepare for it to cost a lot of money. I felt like diabetes was a death sentence when I first heard about my Diagnosis. Now 37 years later I realize it can be dealt with and you can have an almost normal life.
You only get one body. Do your best to take care of it and donāt be afraid to ask questions of doctors and endocrinologists.
Learn all you can about T1D and always advocate for yourself. Stay in control, do not let it control you. Be realistic, the better controlled you are the better your life and health will be. There is very few things you cannot accomplish. Stay positive.
1. Make sure your doctor is a diabetic specialist.
2. Find a support group.
3. Educate yourself on diabetes.
you are your own best clinician. never stop testing or monitoring your blood sugars. things will change and things will not be perfect or under control all the time. you are human and you make mistakes…learn and move on. never be afraid to ask for help.
I would say look for a support group at the online diabetes community near you.
Subscribe to the Juicebox Podcast
1. Electronics have totally improved T1D management. Use them.
2. Team up with a specialist/clinic on T1D if possible.
3. A good life and T1D can work.
4. I learned more about food and my functioning as a human as a T1D than I ever imagined.
Blood sugar numbers are treatment tools, not a judgement on how well you are doing.
I would let the person/people know that you can live a long, happy, healthy life with diabetes as long as you keep your blood sugars controlled. That is the key! It may take some time to get regulated, but once you do, stay that way. It’s the best thing for you and you’ll feel so much better if you do. Also, don’t fret over the occasional high or low blood sugar. They will happen. It’s just part of life with diabetes.
Be patient and learn as much as you can about how to take care of yourself.
Never be afraid to state your fears and admiration to your friends āØļø If you do not know, ask a question.