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What have you learned this year about life with T1D?
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That there is truly no doctor, no medical professional, no website, no research facility that knows what’s good for me and my body as much as I do. Until capitalism is a thing of the past and medicine is not profitable, nobody will ever have my health and well-being as a priority, no matter what they say. Until our society is built on morals and ethics and not greed and profit, my life will never be equal to an able bodied person.
Amen!
I learned to take better care of myself and I can beat most illnesses like covid pneumonia. But love each day and the people who support me.
That no matter what I do, my A1c stays at 8.5 and 8.6 and this disease sucks. It could be worse, I know, but it still sucks.
Ypu are not alone. Keep trying. It took me YEARS to lower my A1C.
Not to compare my experience w/ T1D to anyone else’s. My journey is uniquely my own & my best IS good enough. Be gentle on yourself as every high & low will not be textbook.
Learner? That there are people suffering far worse than I. That there are conscientious, determined, good people who struggle and succeed far better than I. That there are good techniques, practices, and technologies offering hope to many. That, despite a flawed system of health care, genuine success stories pop up now and again. That the people in this system and body politic are, for the most part pretty good. That it’s not the blowhards and bloviators that are succeeding but the day in day out people doing the work of managing T1D that are succeeding. Congratulations! You’re worth it.
I learn from your comments. They are enjoyable, upbeat, philosophical and educational. Thank you.
less carbo more control
Life can be good — just roll with the punches!
After 56 years of being diabetic, it still sucks.
Amen! And it won’t stop. Oh well, you play the cards you’re dealt with…
Nothing!
I learned that I could survive Covid 19. If I get all my vaccinations, wear a mask, keep a social distance, and don’t do any unnecessary indoor activity, I can continue to live. It is not unlike diabetes. If you do what you are supposed to do, and take care of yourself you can live your life. I do miss my daily workouts in the gym, but I have continued to do my cross country runs. Happy holidays all of you, and a good, happy new year.
Upon taking the J&J vaccine my life turned into a nightmare of BG yoyoing between 500 and 30 almost every day for 68 days. I have a brilliant ENDO but he was at a losss for answers since there is no data yet to indicate why or how many other T1D experienced this. i had to retire from teaching earlier than i ever planned since my Dr. feels that I might not live through taking a booster shot. I now live a semi-quarantined life so brittle since the shot that my main focus of every hour is coping with my body’s erratic response to insulin. If it was not for my faith that Jesus is holding me at all times and still has a plan for me I would have given up working so hard to remain alive.
Sharon: I am so sorry to hear this. Try to stay strong.
I hope you feel better, soon.
God still has a plan for you to bless other people. I’ll be praying that your health issues will resolve so you can do that. Thanks for sharing.
This year I have learned that even though dna science has gotten better and we can grow a multitude of cells that until we can figure out the rejection issues and re-program the helper T-cells that literally none of it matters. We will forever be trapped by anti-rejection drugs, until someone figures out how to re-program them.
I have learned that no matter how careful you are how diligent you are if this is disease that sometimes seems to have a mind of its own I’ve learned to stop stressing so much about keeping everything perfect and to just learn to live a little and relax about it
I’m so grateful that I’ve made it to the 50-year mark with T1. Yet, I continue to learn new ways of managing my bg. I learned that I can get into the low 6s without too much stress. I’d like to break 6% but if I don’t that’s okay I never used to think I’d break 7%. For those of you who celebrate Christmas, Merry Christmas!
You’re never too old to keep learning. At 71 yrs of age, 46 years with T1d, I’ve mostly focused on counting carbs and exercising. This year I tried My Fitness Pal and have become more aware of how much fat I’ve been consuming.
That I need to get a CGM but am reluctant like I was with the pump but learned to like it. That when I am “nice my A1C and other numbers are too. And when I am “naughty”, well, things go wrong. But in the words of my dear departed mother-in-law, you can’t be good all the time. Like today. Enjoy T1Ds…there is always (hopefully) tomorrow.
I found the Dexcom G6 to be much more necessary than a pump and much easier to learn to use.
Thank you Mary Dexter!
I have learned that a T1D cannot live without long acting insulin even if it means taking extra medication to combat the adverse reactions to the long acting insulin. Contrary to what one of my former doctors told me, people can be allergic to insulin. I am using the one long acting insulin that gives me the least severe reactions, while also taking a bronchodilator to keep the symptoms reduced. It isn’t fun being diabetic with allergies!
61 years into it with T1D, all the new tech, cgm and tslim2, I can worry less about it while other things demand attention like jobsite injuries. But Merry Christmas to all.
That 56 years with T1DM isn’t holding me back. Still climbing, running, hiking and mountaineering. Training for Denali.
The new pumps and beta cell transplants are looking promising too!
Working at very good control is worth striving
For to have the best life ever
To try to stress less, sometimes with success!
I have had it reenforced that my biggest health issue is manageable for me.
I am type 1 for 76 years, and 82 years old. I had trouble urinating for several years, and in May of this year I could not urinate at all. I have a neuropathic bladder, caused by weakened muscles. I am using catheters three times each day. They work very well. I am pleased that this is a good solution for my problem.
As always, it’s complicated, as many of today’s respondents indicates. My TIR is about 80% yet I have too many ups and downs. My A1c hovers between 6.8-7.0 which is good but I would like to see it back down to 6.5%. Add in an expensive kidney stone attack and cataract surgery and the year has been complicated. Blessings everyone and Merry Christmas.
You are lucky – the endo office I am forced to use is complaining that my A1C (measured 12/21) is too low at 5.5. and refuses to look at the effects of increased activity after aortic replacement surgery. Quacks!
too numerous , one is never finished learning !!
We are all different human beings living with a condition called T1D that we live DIFFERENTLY! What’s good for one may not work for another. But by accepting the parameters we have to live with and find joy in the opportunities that come our way or that we create can give us peace, especially in this holy season of Christmas and in 2022!
The endocrinologist community is amazingly ignorant about diabetes. They may understand about beta cells and pancreases, yet they have no idea how individual this disease is, and they don’t give a damn. We have to use them since they control the dispensation of insulin, yet they don’t actually contribute to advancing against our disease.
Most of them choose to remain misinformed.
https://diabetesjournals.org/care/article/44/11/2449/138477/Adult-Onset-Type-1-Diabetes-Current-Understanding
Pretty negative dismissal of a large group of people. As a diabetes specialist in T1D with T1D, I have many colleagues who have fought to make life better for those with T1D by being clinicians, researchers, educators and advocates. Most don’t have T1D. Sounds like you need to find a different care team.
It’s work, but it works….
With getting a kidney transplant and being on new meds, I’ve had to do my regime differently. It’s been more of a struggle but I think I’m finally getting the hang of it. I’ve had to take more Lispro than before and they put me on NPH (which I don’t like). Hopefully I’ll be able to go back to Glargine soon.
The data is in. Adults make up the majority of those newly diagnosed with autoimmune diabetes and 40% are initially misdiagnosed.
https://diabetesjournals.org/care/article/44/11/2449/138477/Adult-Onset-Type-1-Diabetes-Current-Understanding
How to manage T1D with Tandem t:slim and CIQ, and how poorly the medical community is preparing T1Ds to successfully manage T1D, demonstrated by the D online community.
There is no “one size fits all” so medical and/or “helpful” information isn’t either. Keep that in mind and trust your instincts since you are the only one that lives in your body.
Hear, hear!!!
I have learned that I got a full time job I didn’t apply for, don’t get paid for and don’t get any time off from. Worse yet, you can’t quit! My husband who was one if the longest living diabetics in the county said “see it as a challenge and don’t ever give up”. Become your own Dr. inbetween appointments and do the best you can. Happy 100th birthday to Insulin this year, and Merry Christmas to all of you T1Ds 2021.
This is a reply to Connie Ker – we have to be our own doctor at appts as well. Too many HCP’s have a one-size-fits-all approach and a low opinion of PWD’s
That there is a whole lot more of crap that Diabetes can throw at me that I can deal with.
Libre 2 came out and has an adjustable alarm system. I’m 75 and T1D for over 30 years. I never wanted to be “tethered” to my illness, but this CGM changed things for me. My husband, who cheerfully lives in denial, since anything happening to me is unthinkable for him, so he’s no help and never has been. The CGM is no longer a tether but a lifeline. I’ve used it since April, and it changed my understanding of my reactions to food, stress, exercise, and delays due to gastroparesis.
The same thing I have to keep learning over and over! I am happier if my management is good, but not too rigid. Diabetes often has the upper hand no matter how much I know. My mind is often better than an algorithm.
I’ve recently taken the Serenity prayer to heart. It works for me in life as well as in treating my T1d. Holding onto past feelings that create resentment cause my sugars to be high and resistant to insulin.
I learned that my choices greatly determine my well being.
I learned that it’s hard to control your blood sugar when you’re sick. It was harder to lower it.
My control is a lot better when I replace my insulin and infusion set every 3 days
I think this was the best question ever. This is always the first thing I read in the morning. I feel close to all of you, my fellow travelers on this long and arduous road. Thank you all for your honesty, candor and humor!! Happy 25th of December!
Excellent blood glucose control is no match for 40 years of disease on this body.
There is never a vacation from diabetes. It can be exhausting at times.
Being mad/upset/resentful about my 21 years of diabetes has and never will make it go away. It won’t change my childhood or how I adjusted to it. It won’t help my control. The only thing it does do is stop me from meeting my full potential.
No one knows me as well as I do, Endo taught me this years ago. Just want to Wish All of my Diabuddies a Merry Xmas and the Best of Bgs!
It’s both easier and harder to deal with when you are elderly. On one hand, there’s more time to devote. On the other hand, there’s less memory: forgetting to bolus, etc. But, at 82, I awake each day surprised that I’m still here; so it’s a win.
Oh, and that a proliferative retinopathy bleed doesn’t mean I’m already blind.
Amen to that my friend. I too seem to “ forget to shoot “, as I used to say, and still do. 72 years old, 60 with T1d. That’s my main complication.
That I am indeed “I > /\ V”. This past year with all its challenges proved to my that in terms of my life with a bipolar partner “I > his /\ and V”. I also learned that I prefer distance appts – no scolding about weight etc (and I am not overweight, but those comments are part of the “pre-recorded” spiel).
I learned how to achieve time in range of +80% with a few diet and lifestyle changes. CGM and Tandem’s Control IQ helped too.
After 45 years of T1D I have learned to cool it a bit! If I’m my BG is a bit high now and again it isn’t the end of the world. I managed for many years without a pump or cgm and wonder if some days we are constantly overreacting to a nonstop flow of data!
I have learned to double dose for the nightly popcorn I love.
There’s always more to learn.
I learned that this community is fantastic and that I’m so glad I found it. I’m grateful for the articles, the questions, and the conversation about diabetes-in-real-life!
A lifetime of high and low glucose levels does damage that I’m now paying for with chronic kidney disease and hearing loss from nerve damage. Even with 90% TIR now, 66+ years of life with T1D takes a toll.
I’ve learned that your frame of mind has a lot to do with how you deal with T1D during a pandemic or anytime. Being able to walk, stay physically active, and bike outside was a blessing for my husband and I.
As much as you try there are no two days that are the same one day good next day not so good diabetes is very frustrating even after living with it for 45 years.
I learnt that glycoHG A1 can be misleading and biased downwards in some circumstances, e.g. if one has low red cell blood count, and that the calculated Dexcom indicator may be a better indicator, and this can be confirmed by tests to do with 1,5-anhydroglucitol (1,5-AG), fructosamine, or glycated albumin. My endo prefers the Dexcom indicator to the actual measured Hgb A1c, saying it is confirmed by the CGM which ‘doesn’t lie’ and a fructosamine test.
I’m to tired of being sick and tired of having doctors who assembly line me and a doctors staff who could give a sh*t. So I got a new Endo 5 days ago. Wish me luck. This Endo brought her game on our 1st appointment. I respect that. Never settle.
Sometimes it was easier when I did 2 shots a day and urine tests.
I agree. CGM technology is a blessing but it is stressful always seeing the numbers!
Nothing really. Been living with it for almost 50 years now.
I have learned that there is always more to learn to make my life easier with T1D: perhaps learning new ways to use the algorithm on my pump, perhaps finding new foods to enjoy, or ways to enjoy foods at least occasionally that I had left out because of T1D, perhaps finding new sites about T1D speaking to better technologies and others with T1D.
That I really see the value of a CGM.
Dexcom and Tandem CIQ make it much easier but diabetes still needs attention and sites changes, sensor changes, pump refills and such. It is always there.
60 years for me technology catching up with this disease.
I switched to the Tandem t:slim with Control-IQ pump after using Omnipod and Dexcom without connectivity. I love my tighter control and TIR that my pump achieves for me my reading my CGM data from Dexcom, it has been a game changer. The only downside is getting used to the tubes and having to hang the pump off my waistband or belt or pocket. It’s getting easier and I haven’t dropped it in the toilet yet so that’s a good thing.
Thank you all for sharing. 😊
1) I miss my MDI! My control was so much better then than it has been since going on a pump.
2) I do like that I don’t have the nighttime lows I did have on MDI.
3) Diabetes with COVID is scary and I pray that I don’t catch it!
Air bubbles in pump tubing can be a problem re. Glucose levels.
That I am still here living a pretty full, interesting, and fulfilling life on planet Earth after 59 years since being gifted with the hidden blessing of T1D. Although it is always challenging because of having to think, act, and maintain constant self-care awareness & beta cell consciousness, it has made me a stronger person and living with diabetes has never diminished my inner spirit and spiritual growth. I celebrated another diaversary on 12/26 – to commemorate 12/26/1962, the day I was informed of the lifelong journey I was embarking on as an 8 year old. I now enter my 60th year of dancing with diabetes! Life with diabetes gets better & better as I age!
Diabetes will win if you let it. I may be brittle but my life does not have to be.
That life is meant to be enjoyed. I have found the more conditions I have been diagnosed with throughout time, the more I realize that bodies and brains don’t last forever. I want to enjoy the time by keeping them in healthy working order as well as possible and spending time with others.
Also, that I am very grateful for science.
Man! Do I hope Dr Faustman does well with her possibility of a cure.
https://www.faustmanlab.org/clinical-trials/#diabetes
That diabetes management remains a full time job with no days off, but when I look at other illnesses there are many that are worse. I’m grateful for the technology (Tslim pump and Dexcom CGM) that helps me to keep my blood sugars in line. Hope you had a beautiful Merry Christmas and wishing all of you a very Happy New Year!
Insurance can really suck sometimes.
May
That CGM communicating with an insulin pump is a powerful, effective tool for managing T1D, but expensive. Would happily pay higher taxes to enable all with T1D to have access to that technology!
I have not learned much? having lived with it for the last 50 years and coping well with my GP & Diabetes Consultant being very happy with all of my blood results, my fitness and daily exercise routine, in the summer i jog/walk 5.6 kilometres and in winter time I do that same distance on the treadmill.
The consistency I have created in my daily management and glucose control has made my existence with T1D so much easier! The more strictly that I adhere to the guidelines that I set for myself, the more T1D because a secondary thought instead of a primary thought.
I’ve learned I can either suffer because diabetes happened TO ME or I can recognize that I created this disorder by attacking my own body out of guilt or shame, just emotional perspectives, owning that and realizing diabetes happened FOR ME! Awake up call to changes I need to make in thinking and lifestyle so I can live a fabulous life!
Although I was diagnosed over 7 years ago, I still struggle with acceptance of myself as a PWD. In 2021, I realized I was living more FOR diabetes and WITH diabetes and that I do have the power to manage my relationship with diabetes differently. A work in progress…
I learn that the technology is getting better for diabetes and has let me have a little bit more control for having uncontrollable diabetes
After 55 years of T1D, I’ve learned I am not immune to complications (T1D snowflake cataract in my only good eye). I’ve been complication-free and under decently good control since I was diagnosed at age 6. I’ve learned aging is harder on T1D management than puberty or pregnancy was.
You must NEVER make peace with Diabetes, it does not care.
I’ve learned how important it is to have the same diabetic provider for a while. In the last seven years I have had 10 endocrinologists and Even more diabetic educator. Previously I had the same diabetic team including a neurologist for almost 10 years. This Matt Maher consistency with care grapes and more congruence in goals between my endrocrinologist and me. Decorative near me well enough to work in ways that helped me.