Hey everyone, I’m wondering if there is anyone on here that has had T1D for a long time and was uncontrolled for the beginning but is now under control, if that makes sense? I am 27 years old I got diagnosed at 17 and was uncontrolled from the time I was 19 till probably 24 years old. I developed complications and I’m feeling like I’m never going to live a…normal life without these complications. Just looking for someone to talk to. Thank you for reading.
Kevin
Hi Kevin!
I have had diabetes for over 25 years now and am lucky to only have a few complications so far. 
Have you read the book “The Book of Better: Life with Diabetes Can’t Be Perfect. Make It Better” by Chuck Eichten? I highly recommend it! No matter what you’ve done in the past, the only way to help now is to do better–and even just a little better is still better.
Good luck!
Lauren
HI Kevin,
I was diagnosed in 1979, I didn’t start regularly testing my blood sugar until 1999 so that means I was basically uncontrolled for 20 years.
I went through a very bad time, then it got worse, and now I feel a lot better. Along with a lot of changes in my life I decided to take care of myself the best I can.
anything you want to talk about - go ahead. you can pm me if you want privacy
it is never too late to make positive changes in your life.
Joe
Like Joe, I was diagnosed in 1975 - so (in April) I will have been a diabetic for 40 years (WOW! Even I can’t believe it!!). I spent time where I didn’t take as much care as I could have and didn’t really understand a lot about diabetes. Then I decided I just had to feel better.
I have diabetic retinopathy, kidney disease, neuropathy (am I spelling any of this correctly??), I don’t feel my lows and the highs make me feel beyond horrible (even in the 200’s sometimes). But I’m on a pump. My A1C is usually around 6.1. I try to eat right (I do mostly low carb - read Dr. Bernstein) and I work on myself to exercise everyday.
ALL of my doctors think I am doing extremely well considering how long I have had this disease. Me too. Even though it’s depressing sometimes and I often feel like a “disease” when I leave a doctor’s office (cause I see a lot of them!).
I’m blessed. I pay attention and my life is better for it. I’ve heard I’m a little too anal but you sometimes have to be to live your best life.
I’m not on here much but I’m still available if you want to talk.
Lynn
Hi,
I would also recommend my book: “Diabetes! A Lifetime of Being Too Sweet.” I’ve been Type 1 for over 46 years now and have suffered some of the complications because I didn’t take very good care of it at first. It’s a sneaky disease. Not only do I describe my life with the disease but also write about the latest research and the real possibility of a cure. I am an advocate for both the ADA and the JDRF and Dr. Garry Tobin, Director of the Diabetes Center at Barnes Hospital wrote the foreword and several other doctors have endorsed it. You can also email me w.a.crocker@att.net with any specific questions you may have. You can get it at lulu.com publishing.
I too was diagnosed before fast acting insulins and treatment was NPH and Regular and there were no meters and I recieved no education- I was 13 and my parents were clueless. I had cataracts just 5-6 years later and nothing else. I’m not a diabetic with an a1c of less than 7.5 I still struggle with pump CMG etc it is just hard. BUT I am getting better. And A1c is "going in the right direction."
I don’t think a tough start is a verdict. Your blood sugars change every minute so there are lots of fresh starts.
I have no advice for you. But I have been insulin dependent
since 1951. I developed diabetes at the age of 8, and am
now 72. I have had some retinopathy which was treated successfully
with laser surgery. I am not particularly well-controlled,
a1c hovers about 8.0 or a little less. I am generally healthy,
and many of my age-group friends have medical conditions
which interfere much more with their enjoyment of life.
I am now semi-retired having taught at the college level
for over 40 years. Life can be good even though diabetes is often a challenge.
Hi Kevin,
I’ve been T1D for 48 years. I was diagnosed at the age of 9 back in 1967. Up until the time I was married in 1980, my diabetes was not well controlled. As I remember, my A1C’s averaged between 11-13! Back then though we did not have many tools to help us. A blood draw every 3 months, urine tests, multiple daily injections–wonder I survived! I have been blessed with good health. I have 3 grown children, with no signs of diabetes in them (knock on wood). My chief complaint is joint pain, which is probably part of the aging process! I have been on the insulin pump about 15 years now and the CGM about 3 years. My A1C’s are not perfect, but average around 7. I try but all you can do is the best you can!
Diane
Yeah Diane, I’ve had Type 1 for 46 years and I remember those days…and not fondly. I’m surprised that you took multiple injections as I started out with 2 shots a day, regular and NPH, made from cows and pigs, of course. And A1C’s weren’t used routinely in patients until 1978, nearly ten years after I was diagnosed. So, all you had to go by was your current blood sugar levels at the time of the test. Also had to boil syringes.
I’ve had type one since I was three and it’s been 26 years now. I had ok control growing up and as of right now, I have background retinopathy, which requires no treatment and isn’t considered at all serious. I probably could have done a better job of controlling things through my teens, but I think that’s true for most of us :). I started pumping this year and I’m hoping it will help keep me complication free in the long term. I think we can live long healthy lives as type one diabetics and judging from some of the comments here, even if you go through a rough spot and get some complications, you can still live a full, happy life!
I can’t offer any other advice different from what’s been posted so far, but I want to add my experiences as another perspective. I was diagnosed at 10 months, and in July will celebrate my 49th anniversary. I was on multiple shots a day, never tested (peeing in a cup!), and made a lot of bad choices as a teen, but at 25, decided I needed to relearn how to control it, rather than let it control me. I had a couple 15 A1c results when I was in college, and it was several years before I knew how bad that was. I had peripheral retinopathy in my left eye (only the left!), which was abated by laser treatments. I’ve had 6 trigger finger releases, and carpal tunnel releases in both wrists, too. But I live on my own, have been on a pump for 15 years, use a CGM, and have fabulous discussions with my endo. You may not be able to undo the complications, but you can make the choices that work for you, and still live a fulfilling rewarding life. There’s no one way that’s right for all. I would also suggest not thinking of it as a disease. I never have. I have a unique life style! You can private message me and I can share all my habits, good and bad, to help you make decisions for you!
Regardless, good luck to us all!
GREETINGS KEVIN.
jUST LIKE MANY OF THE POSTS ABOVE, I TOO HAVE SEEN MANY CHANGES WITH THE CAEW OF type 1, OR juvenile onset AS IT WAS CALLED BACK IN 1966 When I WAS 3. Diabetes is not the cause for my awful typing skills, but has caused some complications. I can still walk, see, process blood through both kidneys, so I feel like I did something right for all these years. You might have peaks and valleys as far as diligent diabetes management. You will live life ounce, so do what you want, live life to the fullest. I know I did, DEAD HEAD from way back, and I loved being part of the Ski Resort industry for 3+ decades. This will be my first time back to this site for 2+ years. Participation here is part of my theory for today, and it will be a great day Kevin. Boiling syringes, test tube urine tests, NPH and Regular, yup, been there done that. Now pumping for year #16, use a CGM when I feel like dealing with the Meter BG alarms. My true focus is loving myself, so I can also love my family around me. Grown Children, college students, so I did something right there. My wife just beat Pancreatic Cancer, and I survived diabetes now for almost 50 years. “My Goal” short term. In short Kevin, you may be in a valley today, but it sounds as though you have experienced PEAKS as well. Live life to the fullest!
Jedski
I am 24 years … and been t1D since 5 months …I AM happy that i have less complications but i ahve few doubts please suggest . i have been managing sugar levels in between 120 to 250 … and max once in a month my sugar levels are going high to 450 … where i have been given saline all the time where it is not getting over nerves… it is aching a lot … iam facing problwm at this time and all the time iam able manage… and had sensation problem with left leg . if aany one could help me please…