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Today is the first day of National Diabetes Awareness Month! In the comments, please share any advice you wish you would have received when you were diagnosed with T1D.
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I was 7 years old, 67 years ago. I had to boil glass syringes & long thick steel needles twice a day. I had to test my urine 4 times a day. My dr said never use diabetes as an excuse & don’t ask people to make special food for yourself. She made my mother tough with me. They said “never say never.” Say “ Yes I can”. Yes, maybe I would not have become a successful lawyer for 15 years and thereafter a successful criminal law LA Superior Court Judge, but I hated my diabetes MD & resented the toughness of her & my mother. No compassion from either one!!
I was diagnosed in 1961 as a 6 year old. No one ever mentioned carbs back then. Just told to not eat sugar/candy/cake, etc. No one said to be careful about bread or pasta or pizza etc. I have done well these 62 years so I must have not eaten too many carbs!
Don’t believe that you’ll be cured in 5 years! Lol mostly kidding.
I would say find a community as soon as you can. It makes a world of difference to have others in your life, even if just electronically, to support and commiserate the daily life of this disease. I know 1996 was not hopping with online communities, but thank goodness I have one now.
Wish was properly diagnosed in beginning. Have LADA and was diagnosed with DM2 because of age. Not other reason. Took two years of frustration
Don’t cheat. You will regret it down the road. Don’t try to live like everyone else because you’re not like everyone else.
Watch what you eat and drink like alcohol or beer also monitor your Sugars
Eat low carb. Don’t just eat whatever you want and cover the carbs with insulin. It makes blood sugars way harder to control. I keep my carbs to less than 20 per meal and it works well.
Also, don’t be ashamed of depression. Most diabetics go though it because it is such a time consuming disease. You are on duty 24/7 365 days a year. It’s draining and it’s ok to talk to someone about your mental health.
I wish I would have had a mentor to help my with my journey. As well as a good Endocrinologist when I was diagnosed 40 plus years ago.
I agree! The hospital where I was diagnosed did not have the resources to help those with adult onset T1.
Don’t listen to the scare tactics.
Take advantage of the technology: pumps and sensors that nearly mimicking the bodies natural responses. Cost can be a problem though and insurance certainly helps.
“It’s not the end of the world and you can do this and here’s where to go for help.”
I wish someone would have explained what a low was and how to treat it. With my first experience with insulin my doctor only told me how to use a syringe and how much. Two days I experienced my first low in a department store dressing room. 😑
Based upon the usefulness of the advice I had received at the time, the less said, the better.
DO PHYSICAL ACTIVITY
First and foremost, diabetes is ALL ABOUT YOU. It is unique, just like you, and unlike anyone else diagnosed. My advice is to become the most self-aware person you can be. Saying the words “no, thank you. It doesn’t agree or it interferes with my control” should become second nature.
And, find a doctor/endo that will listen and empower you to learn about your body and how it responds to food, chemicals, drugs, stress and exercise. Remember – It’s a journey and thank all those who help you be the healthiest person you can be.
Using a split dose of NPH and Regular U-80 Using NPH and Regular U-80 insulin starting in Diagnosed in1957 I survived 25 years with increasing difficulity having unpredictable low’s from the eratic action of NPH. Ultralente was developed in the 50s and was available but unknown to me then.
In 1975 when I was diagnosed my parents and I were told the cure was 5 years away. Now almost 50 years later, I am still not cured. I wish they had not said this. I might have taken much better care of myself in the early years.
I have had T1D since 1956. It is a long roller-coaster ride. Get ready and jump in with both feet.
I wish some advice I would of received was you still can live your dreams and not be affected by this disease. Even if you have to do shots before going on the pump. Never give up your dreams and never give up on yourself or your diet. Remember that you, your dreams and diet will let you live a long happy life.
Be happy with all the equipment we now have. In the past it was more of a guessing game.
When diagnosed in 1945, I did not know another diabetic. It was that way for many years. I was so isolated and I hid my diabetes from the public and in school. My doctor and my family were the only people I consulted about my diabetes. That was a very unhealthy situation. Peop,e did not understand my doiabetes, it was somewhat a taboo topic.
Things are so different now! I urge all diabetics to find other people with diabetes and to be very open about the disease. I have joined many online diabetes support groups, and I have made many friends, especially on Facebook. I published a book about my first 64 years with type 1 diabetes in 2010. Many diabetic friends have shared their thoughts with me, and the discussions have helped bothe them and me.
Find a supportive T1D community.
Read the diabetes solution from Dr. Richard Bernstein.
I was barely eighteen when diagnosed. Unfortunately, I didn’t have a parental support system and the family I had was incapable of providing the emotional support necessary to manage the disease. Fast forward fifty years. I’ve survived but currently experience incremental complications including eye, kidney and neurological disorders. My only regret was not seeking psychiatric counseling earlier in my life to deal with the stress and anxiety commonly accompanying long-term diabetes. I am compelled to add that the health care providers I saw were “late to the game” and slow to connect the dots between poor control and depression. I am gratified that appears to have changed and providers are (hopefully) ordering adjutant mental health therapy at the time of diagnosis.
See an Endocrinologist in addition to your primary care physician.
You can live a long, productive life if you:
-Eat a well planned and balanced meal plan
-Exercise regularly and often
-Maintain normal weight
-Use an insulin pump (which I prefer over daily injections)
T1D is not a death sentence (as I was told 46 years ago).
Best wishes.
The importance of prebolusing.
You have your good days and your more challenging days (pump malfunctions, wire kink, insurance delays supplies/orders, too much insulin or not enough insulin). Patience is everything!
Get a CGM. Dx 10 years ago at 51yo
That they were actually joking when they said it would only be about 10 years before there was a cure (01/03/91). Or, when they come out with wearable CGMs, don’t shy away from them.
Stick to Low Carb.
I was diagnosed in 1995, I wish Juicebox Podcast was available and Dexcom G6. Both have been life-changers
I’ve done well, listening to “80-180” idea. From no-one but the Juicebox did I learn timing and dose, instead of graham crackers or candy (needs chewed, swallowed before any incremental recovery from lows) a sweetened drink, maybe 5-10 grams enough to be a safety net. With a CGM tighten that range to 70-130…
Patience. It takes quite a while of very small adjustments to get tuned in, this can take years…patience.
Fight for an insulin pump harder earlier on. The tech and getting off long-acting insulin changed my life!
Information about the diet and lifestyle, etc. We did not receive that information for quite a while and I ate eggs and water-pack blackberries until I was admitted to the hospital after about a week. This was 11/1966, so a long time ago. The actual training beyond the hospital training about diabetes was several months later, but it was MUCH MORE than the general public had at that time.
No one knows your body like you do and how it react’s to medication, injury, etc. Not your doctor, not another T1D, just you. So listen to what it’s telling you.
Don’t be afraid to use insulin.
I wish they could have done a C-peptide test at the very beginning instead of two years later. Diagnosed with Type 2 until test showed I produced no insulin.
I thought maybe the cost was prohibitive, but just found out that the cost is between $29 and $169.
Diabetes is to important to take seriously. Find ways and reasons to laugh with and at it.
Go to a diabetes education class(es). Knowledge is so important.
I wish that I could have had the advances that have been made. I was diagnosed almost 50 years ago and the only thing that they kept saying was you’ll be on shots for the rest of your life. I couldn’t do things that I wanted to do with my life, although now you can in some cases be allowed to do things like different jobs.
Even though the insulin is “rapid acting”, you still need to prebolus when eating carb heavy foods!
Because one of my grandsons got T1 before me, I knew they symptoms. I even bought a glucose meter so I could understand what he was dealing with. Then a year after him, I realized that T1 just became my 4th automimmune disease. I was fortunate to catch it before being hospitalized. Went straight to an endo and told her I had T1. She ran the tests and here I am. So no advice I wish I’d had. My endo said I’m a rare patient because I knew the signs of T1 and could go straight to a doctor.
I was ten years old when I was diagnosed in 1972. I had a very knowledgeable and positive doctor who taught me from the beginning to be proactive in my healthcare. He told me that I could live a long healthy life by living an active lifestyle and eating a healthy nondiabetic diet. I was allowed a daily sweet treat as long as I did some form of physical activity before or afterward. He taught me what complications were possible and what symptoms to watch out for later in my life.
I never felt resentment about being a diabetic because of his positive approach. Because I was taught early to do my own injections and test my urine on my own, I didn’t feel like I had no control over what was happening. It was my new way of LIFE!
I don’t have any other advice that I would have wished for.
WOW, you had an incredible doc to tell you all that back then!! A gem before his time.
When I was dx in 1955 I was 8 years old. I was given no information, told nothing at diagnosis. I wish I had been told to continue to ask questions and to persist in educating myself.
Janis – you are doing fantastic!
It is sort of hard to give advice to a 9 year old (the age of my diagnosis in 1973), but if I were older when diagnosed and could really take advice to heart, I would probably say don’t stress about being perfect as diabetes is a difficult disease. But try your best and you will be fine. Also, don’t believe it when people say there will be a cure within 5 years. I believe eventually that will be true, but as of right now, 5 years is being a little too optimistic.
That it is a 365 days, 24/7 illness.😞
Diagnosed in 1962 at age 8. I learned to embrace it, love myself in spite of it, and live with it from an early age. What advice do I wish I would have received? “The best is yet to come” because the science of diabetes care has progressed over time and the changes really have made it easier to live with … and so it continues …
I wish patients were taught to understand their bodies and conditions as well as possible, or at least given suggestions on where to read. I like to keep up with the current medical hypotheses at pubmed.gov
I would have had my digestion investigated far before the diagnosis of T1D and it would have been helpful for BG control in the early stages.
You have to learn to think like a pancreas!
I was diagnosed in 1970 and my answer is more what I wish I wasn’t told. As a 14 year old, I was told that I would probably be dead by 50, have my legs cut off and go blind if I ever ate anything sweet. So with that hanging over my head I became very rebellious and did not care about anything because I knew what my future was. I was going to die anyway. As I grew older older and realized none of that was true, I found out how much harder it is to change my lifestyle was it was set. I wish that everyone would have told me that there is actually a future and I should exercise, make wise food choices and if I fall back one day I can do better the next day. Thank goodness children have more support and more options today.
Jan – you and I were given the same poor advice by our ‘diabetologist’. It’s a-shame they were so short sighted, so I am glad we have proved them wrong!
Learn how proteins and fats affectvthe absorption of carbohydrares and learn how to adjust dosing.
I was only 6 years old so advice would have been given to my parents. I do wish I would have received any advice at all. Diagnosed, sent home, don’t eat sweets and test your urine with the test tube. I would have liked advice on finding youth camps and groups.
In 1968 I was diagnosed with brittle diabetes. We had no technology to help us day to day; no glucometers, no insulin pumps.
, no CGMs and no A1c. Our prognoses were incredibly slim and negative. The advice given was eat right, take your insulin and don’t exercise too much. Had there been good advice, it should have been ‘eat minimal carbohydrates’, ‘try to keep your urine sugar as low as possible’ and ‘adopt an active lifestyle to help metabolize the food eaten.’ Most of all ‘keep a positive attitude!’ I developed each of these practices and have been free of complications the entire time. With today’s technology we have the tools to out live all of our non-diabetic peers. Keep your chin up and live!!!
Prebolus
In the 1950s I was not given any good advice !!!
I wish I would have found an Endo from the start 18 years ago! I was Diagnosed as a type II and treated as type II with medications for type II by my regular family physician and OB for my pregnancy and then continued with GP for three years afterward being treated as a type 2!
NO ONE told me about an ENDO or a Peptide test! That is ALL it takes to see if you are type 1 or type 2 is a peptide test to see how much insulin or if any your pancreas is producing. (NOR DID MY GP or GYN even know what it was!) GP do not know enough about diabetes to treat anyone! All diagnosed diabetics should right away be referred to a ENDO diabetic specialist! There is such a shortage for ENDO’s in our area! Seems now the demand is higher there would be a push for more diabetic Endo’s!
I was soooooooo sick the entire time I took pills/metformin with my IBS and sensitive stomach! I missed a lot of work and life was miserable!
INFORM… GP’s about the peptide test!!!
AND… GP’s refer any patients that have a high BG and then high A1C directly to a diabetic ENDO! Do not try to treat something you don’t know much about!
The internet didn’t commonly exist yet in 1984. But I would today say find online supportive resources ASAP! Even at 40 years T1D, I have learned SO MUCH from healthy T1 forums on blogs, websites, and groups such as T1 Reddit threads. Also I have LAUGHED so much, so great communicating with so many others who share the little things no one else will ever fully understand. T1s are SO HELPFUL and supportive to each other with issues, questions, jokes, advice, or just understanding a rant. There’s a whole community out there, link in!
You can do anything but join the Military or eat poison. Don’t let Type 1 stop youself for success.
*yourself
Develop healthy coping habits. and strong routines related to diabetes care tasks.
I wish I had gotten a pump and CGM immediately instead of waiting 14 years after diagnosis. They have made all the difference in my health and mental wellbeing.
Things have changed so much since then and we know so much more about T1D that this is a difficult question to answer. I guess that I would have liked more positive encouragement.