i have had DM 1 for 43 years and have only known 2 locally with DM and both are now passed. Luckily, on Twitter, I have found many people with diagnosis 30+ years. And 2 people I found actually have had it longer than me. Just feeling like a dinosaur and wondering about my future. Really would like to hear from some long timers like myself.
Carolyn, I’ve only had T1D for 58 years and I’m still “new” at it compared with several of the 233 members of our blog group - The Joslin Medalist’s Group where invitations to join are sent to those living on insulin for at least 50 years. Actually two persons have now been recognized as having had Y1d for 80 years.
From what I’m seeing, there isn’t any limit to what we can do or accomplish; I still lead a fairly active life, getting out every day walking or cycling. Isn’t it wonderful how much easier keeping an eye on ourselves than it was 43 years ago? Blood test results in 5 seconds rather than a couple of hours when in a hospital testing facility. let’s live life!!!
Been coping with all this fun since 1966, and similar to Dennis, still live life to the fullest. Kids mostly grown up, working in the Hospitality Industry, and caring for my wife, who has survived pancreatic cancer. Type One in comparison to other ailments is not all bad I guess. I was only 2 when diagnosed, so I really never knew another way. Instant BS results, pumps, and CGM’s sure are huge leaps as far as advanced care.
Keep trying, take everything 1 day at a time.
I’m afraid I just make the cut (dx 1983) - the quickened pace of advancements has gotten my spirits up of late. Medtronics is about 3 years from releasing a pump that requires no user interaction, SmartInsulin is in human trials and there are a couple of competing ideas on how to implant (and protect) beta cells to give a fully “normal” answer to this disease. Not the “10 years” that so many of us were told at diagnosis for a cure but a light at the end of the tunnel, for sure.
You say “dinosaur” and yet you’re on twitter (i still can’t figure that out) - it’s great to meet you!
31 years for me! I can’t say I’m complication-free, as I have early kidney disease and a bit of neuropathy, but in good shape other than that and very active. With all the new tools we have like pumps and CGM, not to mention way more test strips than we used to be given, we can at least have a good shot at a fairly normal lifespan. The latest data for current T1’s is that our lifespan is reduced by 10-15 years, which is a huge improvement over previous generations, and that’s an average lifespan of late 60’s to early 70’s, and some much longer. We know now that women have a more compromised lifespan, possibly caused by more hormonal fluctuation than males, which of course impacts BG and causes damage. It sounds like you are in pretty good shape, yes? We have more patching up to do than the average person, but we just keep on keeping on. Maybe we need to create another subgroup for T1 veterans?
Hi everyone, i’m Jim , i’ve had type 1 diabetes since age 4 & i’m 55 now, 51 years . i’m not doing too bad overall, but i’ve been having trouble with depression . I hope I can make new friends on here & get to know each other better . I wish everyone the best !!
congratulations Jimbo - a tremendous milestone of which you should feel proud. Keep up the good work!
Yeah depression or just feeling down - that kind of comes in our territory. but if it is bothering you more than you think it should, try talking with someone you trust and have her/him help you decide if you should talk with a professional - don’t let it linger too long.
Thank you Dennis ,
I have been diabetic for 43 years I was diagnosed in 1972. Things have been going well for me and I seem to be able to tolerate my continuous glucose monitor insist some and my pump very well for the past 25 years. But it has not absolved from some complications that all my doctors say are related to diabetes. I had some diabetic retinopathy the which was resolved in 1997 and then in the past three years I’ve had some kidney issues and some heart stents although I am a very active person and eat a very low fat diet.
I feel like I’m becoming a bit more depressed even though I am looking forward to living as long as I can but there is a certain amount to me that will not tolerate an uncomfortable life. My wife gives me The freedom to be distressed and or depressed so actually that helps me quite a bit. Although she cannot give me a shot unless it would Be an absolute necessity so I am pretty much on my own as far as handling and managing my diabetes.
I remember from my earlier days they said that there was going to be a cure for diabetes very soon oh I think 43 years is quite a long time.
I have three children none of whom have diabetes and I would feel that if they got it today they would probably have less complications and issues then I’ve experienced.
I hope more people talk about type one diabetes as we are such a small minority of the diabetic population end of the population in whole. I am a very big advocate of the JDR F And I do support their walks and runs and annual events.
I feel like I’m getting a little too depressed here but actually I think life is overall pretty good.
One less thing I would like to note is that being diabetic is not the end of the world I don’t know whether these conditions that it occurred to me would’ve happened if I wasn’t diabetic or not, but I am pretty sure that my table Eadies has caused the majority of my maladies. Every day I simply get up and smile and say it’s going to be a good day!
I’m at 38 years, diagnosed in 1977 at the age of two. No complications. I have had two frozen shoulders, which is more prevalent in T1Ds. And I was diagnosed with Grave’s disease a few years ago. My endo tried to diagnose with me Type 1.5 a few years ago, I stopped her mid-sentence and said - let’s just say that after 20+ years on humalog/novolog, I’m resistant and label me as type 1 with insulin resistance. I was on Victoza for a couple of years, but stopped that late last year and I have just started Bydureon a few weeks ago (same class, but once a week, instead of daily injections). Resistance is gone. A few pounds are gone (+!) and BGs are more stable. I don’t have to try to hard to keep my A1C < 7. I’m not a fan of A1C < 6.
Sadly, I also have a teenage daughter who was diagnosed in 2004 at the age of four. We are working at letting her take over control which is a boatload of fun. It’s amazing what happens when you actually remember to give your insulin.
We both have tSlim insulin pumps and dexcom cgms. The new Dexcom Share is very nice.
I can’t keep my own promises; I keep talking into my phone and it never quite gets the words correct.
I hope You could read my blog and understand that I did not type any of it. I thought Life was supposed to be getting simpler?
I was diagnosed 34 years ago at the age of 1. Thankfully, I am complication free and have a healthy baby boy. It’s so nice to see others who are still doing well after many years of D.
I hit the 30 year mark last September. I have had two eye lasers, frozen shoulders, and a bunch of the side things like thyroid issues, depression, but thankfully no life-limiting complications yet!
I have found this site and other internet resources really helpful to know that NO ONE manages perfectly, and we are all doing the best that we can on that particular day with the resources we have.
I feel like this was the question I wanted to ask when I joined. I’ve had T1 for 31 years and as far as I know, am the only adult with T1 in my region. I’m also a wife and mother.
Other than the diabetes, I deal with hypothyroidism, gastroparesis, PCOS, severe allergies and depression. I’ve also been using a Medtronic pump for the last 17 years. It’s always been a lonely disease for me. I’m so glad to know there are others like me too.
I’ll hit 38 years in August. Not sure of the exact date but it was a couple of weeks before Elvis died. I was serving in the 1st Marine Airwing Band in Iwakuni, Japan at 19 years of age in 1977.
I don’t have any real complications aside from hypothyroidism. I also take medication for high blood pressure. My eyes are starting to get worse but I think that’s an age thing.
I don’t have a pump or CGM and as of now have to plans to acquire either although the CGM sounds interesting. Once I can just use that and not do finger sticks I might go for it.
One thing that happens to me that I’m not sure if it’s diabetes related or not is I get these weird things that happen that the doctors can’t figure out what is, then they go way. In September I had hiccups for 2 weeks. Had all kinds of test and an endoscopy and they found nothing. Finally I decided to take a hit of marijuana (legal in my state) and they went away. Last month I woke up with a sore middle finger. It then started to get worse to the point where my hand swelled and up and extremely painful. Gout they thought until all test showed negative. My endocrinologist did put me on gout medication for goout which seemed to help or maybe it just went away on it’s own? Still a mystery to the rhemtologist I went to.
Anyone else have this kind of thing happen?
Overall though I’d say my health is good and can do anything I want to do.
The key to good health for us is good health insurance and enough money to pay the co-pays and of course taking good care of ourselves.
Hi. This is Ken from LA. May 25, 2015 was the 40th anniversary. of my T1 diagnosis.
When the day came I mostly thought of my T1 friends who didn’t make it as well as the advances that have made management and control much easier, especially super fast glucometers and my awesome pump, which I’ve worn for 13 years.
I’d say my biggest frustration is the slow progress with islet cell research to halt/cure Type 1.
Mostly I’m grateful for my family, who are supportive and my few close friends who know me and how to acknowledge my T1 without making me feel different.
I was diagnosed T1D in May of 1977, at age 13. T1D was my 2nd chronic illness. Juvenile arthritis is my first, diagnosed in 1966 at age 2. I started with U100 regular and NPH insulins, and my first glucometer at age 18. Been all through the tech with T1D.
Now trying to get back on a pump, after having to go on SSDI disability because of the arthritis, fighting to get Medicare to approve a pump. I keep telling myself I am doing it for all the youngsters who will be facing Medicare later
Anyone else notice that we have to tell new doctors “Type 1 Diabetes” if we mention our diabetes? Otherwise, I found that the new doctor assumes type 2.
There are apparently quite a few of we dinosaurs out there all doing pretty well. I am T1D x 60 years. Diagnosed at age 4. At the time, no BGM and only one type of insulin all beef/pork. Believe it or not…life was simpler.
Hi Richard @frankeldpm, Welcome to the JDRF TypeOneNation Forum. We hope to see you often sharing for the benefit of all the wealth of information about SUCCESSFUL diabetes management and tips you must have acquired while living with diabetes. My onset of diabetes was in 1957.
Although I now use lots of technology and the “almost human” insulin, I strongly agree with you that diabetes life did feel simpler in the 1950’s. Yes, we just went to school, participated in ALL activities, including over night trips and camping, without needing an entourage of care-givers - we learned how and just took care of ourselves.
1970s it was restrictions on diet, especially no sweets. No more chocolate cake for my birthday… my mother baked applesauce cake instead.