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What have you learned about life with T1D this year?
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I have learned to appreciate how much better I look after my health and well-being because I live with T1D. I eat healthy, I exercise daily, I sleep well and keep active as much as possible. Life is good. At 57, I am fitter and stronger I have ever been. No sign of any T1D related complications after having it part of me for over 34 years.
Nothing new after 50 years of living with it.
same after 70 years…
CGM helps grasp just how unpredictable life, as measured by bg, is
All carbs are NOT created equal. For me my flavored coffee creamer was causing my morning blood sugar spikes. Those un-noticed 10grams stopped when I included them in my morning bolus. Took me 25 years but much better now!
Caffeine also raises blood sugar…I drink it black and watch a 20-25 point increase over 30-60 minutes. I bolus now.
Beware of powdered “creamers!’ They usually contain some type of disguised sugar.
That T1D is more difficult than life but life is still good.
The perfect is impossible.
nothing new after living 58 years with type 1. always look for the positive!
It seems that I keep re-learning the same things over and over again. Among them: it is logical to trust your gut feelings. another: don’t be passive.
There are so many differences with people who are T1D. How we manage our diabetes can be vert different among the T1D members. Each T1D individual needs to develop appropriate steps that will maintain blood sugar numbers in a healthy range. My steps may be somewhat different from yours. Trial and error can help us to determine what works best for us.
My T1D is different because I have insulin resistance. I use Metformin along with my insulin. I am type 1 with a type 2 characteristic, but I am T1 and not T2.
There can be many differences among the people with T1D.
I would like to see the question posed asking if any of us have insulin resistance, and what is being done to help with that complication.
I feel research is so limited with t1d, but your hope to discover more about insulin resistance in t1d would be an amazing project. I’ll check out clinicaltrials.gov and see if any are ongoing!
T1D can have insulin resistance, just as T2D often does, because they are separately and independently inherited. People w T1D and a family history of T2D are most at risk. I refer to it as T1D with insulin resistance, very imaginative but makes it clear that you still need insulin all the time, but also methods aimed at reducing IR help as well, and the risk for heart disease is higher than most w T1D. Also referred to as double diabetes.
Want to lower IR? Try more exercise and lower carb diet. Find way(s) to reduce stress.
I have been a T1D for many years now so I am very familiar with what this disease requires. The one big difference this year is that I started using the Omnipod 5 system along with Dexcom. Right now I am still on manual delivery until my next appointment with my CDE. Once I get programmed for the AID function I am hoping that it will make my life a little bit easier.
To make sure my ducks are all in a row when switching pumps with Medicare. Been months and I still don’t have my new pump. I have 3 sets left and no cgm. Also be sure to run glucoses as it can get away with you. Woke up to a 390 this morning!!!!
That Jesus is in charge of me life
AND my diabetes
& he is the reason for the season
Merry Christmas
To check the level of my bolus pen before going out. Nothing like going out to eat with friends and discover you have one unit left in the pen.
What was I waiting for! I should have been using a pump a long time ago! I love my closed loop system!
I can have great glucose values & in 5 min everything can change & go up or down
Age 71, 66.5 years of T1. All other health conditions of aging which are in my family are complicated by having long term T1.
Always take way more supplies than needed when traveling no matter how much extra space they take up. Twice this year, I have needed backup supplies due to unforeseen troubles and almost ran out.
Educate yourself!
Most of what I have learned about life with T1D this year, I learned reading comments on T1D exchange. As commented by Richard Vaughn earlier, ”
Richard Vaughn ,”There are so many differences with people who are T1D.” I have learned that we use many different methods of insulin delivery; pumps, pens, MID. Some are parents and supporters. Some use extended boluses and square wave boluses. Some have high BG’s from eating or inserting cannulas, others have low BG’s. Some eat high carb diets, some low-carb, some vegetarian or vegan. Some are very active and exercise regularly, some are sedentary. Some comments are from Great Britain, some in Australia and other countries. Different countries have different ways of covering the costs of insulin and diabetic supplies. Also, there are many different ways of covering the costs in the USA; and many have little to no means of covering the costs.
The list of what I’ve learned goes on-and-on. Thank you T1D Exchange, and all you fellow T1 diabetics.
Merry Christmas, Happy Hannukah, Happy Kwanza, and Happy New Year!
very nice!!!
After 58 years of having Type 1 diabetes with little or no other medical problems, I am grateful for my life. It has been hard and harsh at times with management of the disease, but I then move on to more stable blood glucose days.
The insulin pump has made my life much easier managing the disease. Living day to day is a gift. Still hoping for a miracle cure for diabetes…
This year I learned that I am definitely allergic to metacresol, a preservative used in the newer injectable insulins. Fortunately, I use Afrezza for my bolus insulin, but had a difficult time finding a basal insulin without metacresol that helped to keep my glucose somewhat stable. ***My hope is for insulin manufacturers to find a better preservative.***
That the criminal justice system is not set up for people like us. I’ve never been in jail thank God, but I’ve read threads on FB where many have had to fight for their lives to be treated and even believed that they needed insulin/food in the first place. That grief can affect our blood sugars to a great extent. That despite how far we still have to go, I am blessed to live where I do, in the time period that I do.
You are very correct about the criminal justice system. I worked in correctional services for 30 years and wondered how the T1D’s survived. They were mostly given shots of insulin in the infirmary, insulin pumps were not allowed. Otherwise they were left on their own. They ate the same food as others. They had to go to the infirmary to do blood tests. Many had great difficulties, some seemed to do okay.
With my very “brittle” diabetes, I thought that if I had to live as an inmate, I would not be able to survive. I felt that I was lucky to stay alive when I took multiple daily shots, before the insulin pump.
Technology (Tandem pump and Dexcom) has made my life sooo much easier but I still have to get up and take a walk after every meal to keep it that way. Without the walk I just end up working harder to get my numbers back down rather than keeping them from going up. Also, diabetes has been a blessing to me because I know for sure that I would have been a very overweight person without it.
I was diagnosed with LADA last March so EVERYTHING I know about T1D, l learned in the past year. So much stuff – about dexcom, omnipod, carb counting, causes – too much to list! But so far, what I’ve learned has helped me stay happy and healthy (A1C down from 11 to 5.6).
I have learned that, unlike what my parents were told in 1957 when I was diagnosed, that we can live a long and full life even with diabetes.
yes ays 70 years!!
That endogenous insulin, when manufactured by the body, cleaves from a larger molecule. The other half of that molecule is amylin. Our bodies don’t get amylin in any form after our β cells are destroyed. After 42 years of not having it, my endo prescribed a GLP-1 receptor agonist (Victoza) to help simulate replacement amylin. I’ve lost 60+ pounds and feel better than I have in decades.
the day one stops learning is the day one dies ….. I much prefer to learn !!
After 18 years of over correcting if the i see a high number but have enough insulin according to IOB I do not look at Dexcom until IOB goes down. Duh. No more lows. No more up and down. Old dog new trick.
It takes so much self control to see the number and wait,one eye on the CGM, knowing it probably will be okay in a few hours. Like waiting the 15 minutes for the glucose tablets to work. I do a lot of crossword puzzles.
This year I became very interested in clinical trials. I was disappointed to learn t1d wasn’t being researched in more areas. But the good thing I learned (or anppreciated) about life with t1d was that diabetes has made me healthier. I must monitor every aspect of my life to stay safe and healthy. Other family members didn’t require that kind of monitoring, and it is reflected in their lives.
so true!!
Time in range is cool.
And the show must go on…
I learned that I can have my A1c done at Quest rather than in my endo’s office where they use Labcorp. Quest results seem aligned with my CGM. Labcorp results seem to be higher. My endo doesn’t care as long as it’s under 7.0, but I much prefer a 6.2 from Quest rather than a 6.5 from Labcorp.
Really??? I love my OMNIPOD5!!!
Actually, nothing new that I can recall, just that T1D is constantly changing!
That my OmniPod5 is a lousy excuse for a pump. I went from a Tandem TSlim X2, to this and my bgs are running so much higher, ruining my 6.7 HgA1c. My question is how did this piece of junk manage to get FDA approval?
I’ve learned a lot through the Juicebox Podcast (and FB group) about all things diabetes!
I have learned that I will always learn something new about diabetes and the ways different ages, life events and choices affect me. I have learned to be up for the challenge, and not lose hope!
It’s complicated!
For our not quite eleven year old (yes, on the verge of puberty),diabetes has a mind of its own. Every single sport/extra curricular requires different management. An hour of figure skating followed by 45 minutes of off ice conditioning requires the highest amount of uncovered carbs! Recess outside, and temps/weather, is very different than inside recess. This year’s PE is much more rigorous than previous years.
What I told myself over nine years ago was to look back long enough to learn, then move forward. That is one thing that has not changed!
A constant evolving treatment arena. Find what works for you..and don’t let your physician, insurance company or pharmacy push you around….stand your ground and get what u need to take care of yourself.
70 years agrees with you!!
IF I have learned to heartily and genuinely say:
Merry Christmas
Happy Hanukkah
Happy Kwanzaa
Happy New Year
Et al (way, way too many to list)
THEN I have learned to heartily and genuinely say:
Happy 100 day! 💌💯
After 48 years with T1D it’s okay to say that I prefer MDI and to not feel guilty about not using an insulin pump as recommended by my pump-pushing endo.
I’ve learned to be even more grateful for every day . Sixty-seven years of life with a wildly fluctuating glucose level has stressed my kidneys, circulatory and nervous system. Now I’m dealing with those complications, too.
I love my new OMNIPOD Generation 5 communicating with my Dexcom 6. My nights have leveled out, rarely experiencing night time lows, which were common before this technology.
Td1 is way more complicated than can be fully controlled.
If insanity is doing the same thing over and over expecting different results, then diabetic insanity is doing the same thing over and over and getting different results. Wow!
The same thing I learn every year: that what I already know has now changed and there is so much more to learn. It’s an ever changing T1D world and best to be ready for change
There’s always something new to learn .. a new way to manage.. or something I didn’t quite understand that suddenly becomes clear about diabetes and it’s technology!
It AINT always diabetes no matter what you wanna believe.
That’s funny to me, Jeff Balbirnie!
In a similar vein, I got kinda happy when I burned my hand so badly I had to go to the doctor. I just thought, “Yay! finally got something that was diabetes related.” ;p
(No, I wasn’t _really_ happy about burning my hand, but I did have a moment of, “ha! the docs can’t blame my diabetes, just my inattention!)
oh, crud…
that was supposed to be “WASN’T diabetes related.” doh!
The difference between progressive chronic conditions and acute. My husband broke his arm a few weeks ago. It will heal and in a few months he will be able to do what he has always been able to do. So he has a grace period until then and I try to take up the slack. For those of us diagnosed as adults, we learn how to compensate, how to do things despite whatever, and to deal with the impatience of others.
The ways of coping are many and seeking a new approach can provide valuable insights.
I’ve learned that despite my numbers improving, it’s never good enough for my doctors. So it’s up to me to keep myself readily prepared for the negative. I learned that I’m losing nearly 100% of the feeling in my feet and I had to harass my doctors to get help. Each day we draw a breath is a victory for us and our Friends and Family, where I live, we are all just numbers on a wall. After the 1st A1C is taken anyway…
My doctors believe I overreact to high bg readings. In their opinion I am doing much better than I think I am doing. My doctors have been very positive.
Be vigilant, yet flexible.
With a little effort, watching my diet, doing exercise daily, pumping and a CGM, I learned (and continue to learn) that T1DM can be controlled and I can live a normal happy healthy life.
With excellent pump & CGM, worries about highs or lows can be minimized.
based upon 3 month 780g trial
T1D tells me- Stay alert and stay humble. I can still mesh with you, any time, any where. But I have guardians on my side to guard my back and even the playing field- My wife and my CGM.
Have backup plans. Educate family members/others what to do in case of a severe low or other emergency. Keep an adequate supply of all diabetic supplies and prescriptions. Have your will and legal papers up to date. Stay calm and do your best to stay well. Have empathy for others.
To accept help from others. To prioritize and follow through with my commitments to myself and others for better quality of life.
You can learn the intricacies of YOUR T1D when you keep a record of events with details of how you managed them. Then you can review your “results” the next time something similar is about to happen.
Nothing that I didn’t already know!
That it never ends. Just added gastroparesis to the mix and the fun begins! If only I could predict which day would give me highs and which day would give me lows. (sigh) But, at 83, it keeps me busy.
Not providing individual education and training to T1Ds or their caregivers causes much more pain and suffering than I could have ever imagined. It hurts me to see this.
That no one person is the same and everyone has different preferences. What may work for me may not work for all.
Everyday is going to be different.
My diabetes care is only as good as the time I devote to it. I. An have the best devices and intentions but they mean nothing if I won’t devote time to it
So true!!
That it requires a lot of effort and willingness to try and keep up with it 24/7 and 365 days each and every year. I’m grateful for the technology that we use and hoping that the next few years bring even more research results and updated equipment to help keep us all as healthy as possible.
That the pump doesn’t stop totally til you stop it which made a difference how I treated severe lows that hang on for hours
That I wish the Afrezza product came in smaller dosages. My sugar goes down too much when I use it (the 4 unit smallest dosage). I have to keep an eye on my sugar level as it heads downward and I need to consume some carbs at a certain level to make sure I don’t go too low.
Create smaller units on your own. Save some of the empty cartridges, then open the 4-unit one and slit it in half to have two 2-unit cartridges. Be sure to make them with some nail polish or permanent marker. There are plenty of videos on YouTube showing the process.
Not all insurance companies are created equal. I had a great plan as a state employee and was able to get insulin for free! I decided to stay home with my son after he was born and I switched to my husband’s insurance. He has the best plan provided, yet insulin costs a fortune!
LIfe can be good and lucky. Medical interventions keep being a success ( had successful cataract surgery on my one eye with vision and for the first time in a long while can see clearly the bright world around me with 20/25 acuity). I am back to my weight in high school and A1c keeps dropping as time in range goes up. Survived Influenza A within the last weeks. Best Christmas and New Years wishes to all.
A never ending story. Being retired, I thought I could handle my therapy easier with Fiasp and Tresiba, while delaying the moment I would go back to a costly pump. My results are more than adequate, but I still had to face so many episodes that kept me concentrated to find solutions. T1D is taking too much place in my mind, I finally decided to delegate some of my burden to a hybrid pump pretty soon to support me. I need more time to relax and enjoy life.
SG response to exercize and or strenuous activity is much slower than carb absorption. An exercise response could be over hours, while glucose tablet responsc is in 15 minutes.
I continue to be thankful and happy for the technology advances. One night using the tru-steel infusion set I didn’t have it properly connected in the middle. I tried to sleep and the pump kept telling me my BG was going up. I hadn’t eaten so much but assumed I needed more insulin and bolussed. after 3-4 hours it was up to 300. I got up to check site and discovered the loose connection. So even though I only use about 28 U a day, I really need the insulin to go into my body to stay alive.
Recognizing that most of the time I do a good job of managing my diabetes and learning to stay calmer and be kinder to myself when things don’t go as expected. 😊
To be kinder to myself when I error in estimating food intake and/or insulin dosage and my numbers go crazy. To keep informed. Now reading “The Discovery of Insulin” by Michael Bliss, and watched “The Human Trial” documentary about Viacyte.
Life is good, but it does take work and perseverance!
No two days are ever the same, no matter how hard I plan it.
That it’s hard sometimes and scary sometimes, but mostly very manageable, and that I can ensure that it doesn’t impact who I am or what I want to do and what I want to eat!
And it’s all going to be OK if you pay attention and have patience!
Technically learned to “prebolus” 20-25 minutes before eating (with almost no spike after any meal), decrease or even suspend insulin/basal the same 20-25 minutes before specific tasks to prevent glucose drops. With the thought if a miscalculation levels rise higher than I want (my upper alarm is set to 125) I’ll administer a bolus knowing my basal will never drop my glucose, that’s my bolus’ role. I can go without food all day without dropping (except for physical exertion), and likewise minus physical activity I can go to bed at…..74 and wake between 70 and 80. With 5 basal settings my “line” is finally straight minus physical exertion and food, to protect against the “dawn phenomenon,” levels dropping while I sleep.
Emotionally still learning there are things worse than diabetes: imagine a mom watching her T1D child with ADHD or celiac disease; a teenager going through puberty; even my two sisters dying of cancer.
I’m living decently with and through TYPE 1 diabetes.
Ever changing. Ever the same.
That information for people my age with T1D is very limited. It all seems to be based on the recommendations for treating T2D. Unfortunately, the medical community does not seem to recognize that there is still a difference between T1 and T2 in people who are older.
There is always something new, good or bad, to learn with T1D.
Always learning but better than being dead.
After 45 years of being a T1D I’ve learned to adapt to my body as it ages. This year learning to cope with a spinal epidural and a shoulder epidural.
No fun to take triple the normal fast acting insulin for days after each procedure but am thankful for my CGM.
Tom R
This year: I’ve learned what was true at the beginning of T1 is true 16 years later. Carbs need to be well managed. Love tech that allows me a path to bgs averaging 90. Not using automated modes. But still solid help. I’m the weak link. This year I grew weary of being careful. It has been more work. For 16 years I’ve had a1C no higher than 5.9. Turn 70 in a couple days. This year I have shared T1 with more age related infirmities that distract from best T1 care. What gets me back on track is to realize what is good for T1 is good for many other ailments. So lowering my carbs, again, easing the math involved each day, easing inflammation, planning ahead for success. In the beginning I was motivated to be my best for family. I still want to show grandkids responsible health care that maxes out an ability to be my best. Whew!
How grateful I am for science, research and clinical trials.
The more a condition is understood, the easier it is to live with, control and accepted by society and possibly prevent/ cure.
Out of my many medical conditions, T1D is one of the easier to live with in this current time.
Retirement got really complicated really fast. T1D is a rollercoaster. Things change constantly. Insulin is not to be trifled with.
Be patient! don’t despair
That I can control my A1c if I’m careful with diet and insulin management
It’s still hard. Yes you have to watch everything you eat, drink and how your stress levels are. Stress can definitely affect your Blood Sugars. You can have a Normal life and do whatever you want to do. Hopefully, there will be a Cure