How long type 1?

(Virginia) #143

I have been type 1 for 26 years. I was diagnosed at 8 years old. I suffer from no complications and my Endo is always very pleased with my labs. I also have hypothyroidism as well. I have been using a pump for the last 11 years. My 5 year old daughter was diagnosed at 17 months old amd will have her 4 year “diaversary” on April 11, which also happens to be my sons 7th birthday. He was diagnosed with type 1 at the age of 4. Aprill 11th is also my birthday, so that is a very bittersweet day for me. My daughter has been on a pump since almost immediately after her diagnosis as well as a Dexcom. My son is on Levemir/ Humalog. My daughter was also just recently diagnosed with Celiac Disease and she also carries antibodies associated with Hashimotos Thyroiditis, which means she is at a higher risk for developing it.

(brighter1085293) #144

52 years, diagnosed February 1966. Thanks to using an insulin pump, CGM, and trying to reduce simple carbs from my diet, my last A1c was 5.9 and average CGM value is 113.

Everyone should look at the Joslin research on long-term T1D. There’s a lot of encouraging data available.

My opinion: there is, however, a difference between “complications” caused by T1D and other autoimmune conditions. There isn’t enough information from diabetes organizations about the potential for developing other autoimmune conditions.

(Dennis J. Dacey, PwD) #145

Hi @brighter1085293, I have to agree with you that we - we = PWD - should not blame our “complications” solely on diabetes. Just think of the millions of people around us who have similar “cardiac complications” who have never had diabetes; and just recently I know of people [60’s, 70’s, 80’s] diagnosed with autoimmune conditions, such as those often [improperly] linked to diabetes who have not had diabetes.

I should congratulate you on your achievements although I’ve been told by two different endocrinologists that they never want to see me again with an HbG A1c of 5.9 or lower; since my involvement in the glycosylated hemoglobin study in the 1970’s at joslin I had maintained my readings [since the lab base change from 6.5 to 6.0] in the 5.9 to 6.1 - now the endos I’ve been seeing say they want me at 6.5. I don’t use CGM. but have been able to get my A1c up to 6.4 over the past three years. 1966, the year I was diagnosed with my first diabetes related “complication”, diabetic Retinopathy, by the medical director at Joslin - he then introduced me to an ophthalmologist in Kenmore square who had a theory that he may be able to slow down the progression; yes, I became one of the small group of people like me who laid on the table while Lloyd M. Aiello, MD applied many burns, over the course of a few years, with his ruby laser.

(stephensyu) #146

T1D since 1955 still going strong

(Desiree) #147

I’ve had Type 1 since 2006!
Still going strong even on my bad days :blush:

(carl benwon) #148

I’ve had type 1 diabetes for one year. I’ll be 62 in April. It’s just been in recent weeks that I have had to go to mealtime bolus of Humalog. Had been just one shot of Lantus a day for the first 10 months or so. Thankful the endo did the complete testing to see very early my t1d diagnosis. We kind of knew the honeymoon would be a bit longer then in children/youth.

I’m figuring it all out and have a great support group. Our daughter has diabetes and was diagnosed 14 years ago. As a parent, I got to understand it pretty well, but. . . It’s different actually having diabetes. Amazing just how much these topics are on my mind.

In the grand scheme of things, I still realize I have a charmed life. Just a bit more complication then before, eh?


(Michael Baker) #149

Been there done that. 50 years for me. No complications except a tad of neuropathy in feet. Mtn climb, Hike, Spelunking in teen years, Ski-Nordic&Alpine, Snowmobile and off road. Live near Mammoth Lakes Ca in a big Log home alone currently.

(Patti) #150

26 years for me. The first 10 yrs on syringe and bottle, on a MiniMed pump since then. I test 10-14x day. The platinum in the minimed sensor gave me an anaphylactic reaction, ER trip and all. I’ve had trigger finger, 2 frozen shoulders, have thyroid disease,had breast cancer, but totally healthy no complications 6.6a1c , hit the weights 5x week and doing great, absolutely no complaints, I’m a better person for having this challenge and I soo appreciate this T1 community!

(Kirsten) #151

Diagnosed at 21 months old in 1969. Some minor complications (frozen shoulder, super dry skin, mild neuropathy in feet, trigger finger, possible intestinal paresis, Hashimoto’s). I haven’t taken the best care of myself (last A1c 9.3) but have been “lucky” in that my kidneys are fine, my eyes are fine & I can still feel my feet. Menopause has caused unexpected weight gain so I’m working to revamp my diet & take better care of myself. Oh, on Animas Vibe pump & Freestyle Libre (which I love). It’s good to see so many on here who have had T1 for such a long time.

(tedquick) #152

Have you heard that the Dexcom G5 sensors work a LOT better than the Enlites ever could? They also last longer, and usually successfully complete the stated use length. Dexcom G5s have also been accepted and paid for by Medicare since they are more accurate than glucose meters (9.9% accuracy), unlike any of the Medtronic systems, which are only 11% accurate, so they are worse than glucose meters.
You might want to consider switching brands.

(Janice) #153

As of last month Feb. 2018 it has been 64 years since I was diagnosed, only place it shows up is in my blood, have other problems but not related to the Diabetes. This is an FYI after 64 years I am retraining my doctors, they ask. Anyway FYI for those suffering from Neuropathy when it starts check your BS level each time, mine hits at about 112, found out that if I raise my BS a little it goes away. 1/2 glass of Grape or Apple juice stops the problem, won’t go into all the reasons why but there are several neurologists now that agree with me. This works for other causes of neuropathy, My Endo agrees… I run a higher A1c—7.5 to 8 by doing this my neuropathy is non-existant .

(Melissa) #154

I’ve been type 1 for 34 years. Diagnosed at 18 years old. No complications so far. I’m grateful.

(Lisa) #155

My son has been T1D since 2010, he was 8; now he is 16. Driving now too yikes. He is on 35 units of Lantus a night and Humalog for meals/snacks. Gives injections, was on pump in past, but he went into DKA and has never went back to pump.

(Bill) #156

Hello to all. I have had IDDM for some 60 years now. My diabetes has always been very “brittle” as we used to call it. I did my doctoral dissertation in psychology in the area of diabetes management in the early 1980’s. The topic of my dissertation explored how a person’s interests (i.e., the kinds of things they like to do) influence their success managing their diabetes. It was the first scholarly work to apply a model of “normal behavior” (as opposed to psychopathology) to the area of diabetes management.

I learned a lot doing my research, but moved out of the field soon after I finished my Ph.D. because there were few jobs available and little funding for research. I eventually developed expertise that supported my practice in neuropsychology and behavioral medicine.

I’m doing well despite having had a few “bumps in the road.” My wife and I hope to complete a long-awaited motorcycle tour to the Grand Canyon this spring. That is if we can get her arthritic knee to “give us permission.”

Life with diabetes - it ain’t no picnic. But armed with insulin, a glucose meter, wise counsel, and reliable information a person can still make it work.

Best of luck to all!


(Rebecca) #157

I have been a T1D for almost 19 years this coming December. I was diagnosed when I was 4 years old.
I started off with taking 5 - 7 shots of humalog a day and Lantus once a day and now I’m on an insuling pump.

(Dennis J. Dacey, PwD) #158

Hi Bill @BillHavins,
I like your positive outlook and the way you have apparently accomplished what you want even though as you say “… ain’t no walk in the park”.
I too am in the +60 years living with diabetes, done in life everything I ever wanted, bumped along and survived the rock road.

(Bill) #159

Thanks for the kind words, Dennis. I have had opportunity to meet several of us “old fogies” over the years and it is gratifying to see that many are able to make it work in spite of the challenges thrown at them by diabetes. To me, Nike’s slogan “Just Do It!” hits the nail on the head. I will admit that I don’t care for record-keeping, I don’t like to exercise, and I am prone to want to be “in the moment,” rather than follow a strict routine. But, and it’s a big but, I know what this rascally disorder will do if I am not vigilant. So, I have alarms set on my wearable fitness device to prompt me to check my blood glucose four times a day (I often do it more than that). And I have an alarm set on my fitness device to prompt me to do my 30 minutes of exercise. And the data from my fitness device and my blood glucose meter get recorded. I don’t like it - I “Just Do It!”

Much of this has gotten to the point that it is “just part of me” having done it for so long. When I was twenty-one I got one of those “wake up calls.” I then started managing my diabetes very tightly. After about six years it had become “part of me.” And that was in the day of Clinitest Tablets (blood glucose meters had not been developed), mixed beef and pork insulin, and no wearable fitness devices (heck, the pocket calculator had just been invented).

Years ago I met with a group of teenagers who had diabetes. I asked them how long it takes them to manage their diabetes each day; their responses ranged from “an hour” to “all day.” I had one of them run a stop watch to see how long it took me to do my daily routine (we simulated the various tasks). It took less than 15 minutes (not including exercise) and that was before I was using an insulin pump (I was taking 4 to 6 injections per day based on my blood glucose measures). Needless to say they were shocked.

One young lady said it took her “all day” to manage her diabetes because she and her mother “argued about it” from the time she waked up in the morning until she went to bed at night. She acknowledged that she often put off performing diabetes tasks just because she didn’t like having to do them. One of the boys chimed in and said, “If you ‘Just Do It’ it will be done. And you might have a better relationship with your mother.” The other members of the group were pretty quiet as they thought about what he said.

No, it isn’t always easy. But the alternative is really pretty crumby.

Thanks again, Dennis! I hope you and I are still on the forum when we can say we’ve lived with diabetes for 70 years.


(Suzanne) #160

Hi Everyone,
I have had T1DM for 52 years and am still going strong. I have been on an insulin pump for more that 20 years. Started out on a Minimed and when OmniPod came out I switched over. I also use a Dexcom and have definitely love the convenience and ease of seeing my blood sugars at a glance.
As you said Bill “it ain’t no walk in the park”. You learn something new each day and occasionally will have those oops days.
That said, I feel that diabetes education is a key element to good management along with all the technology now available. I am looking forward to the day when my OmniPod and Dexcom are fully integrated. I have been very lucky as far as complications go. For that I am thankful.
Take good care everyone and stay focused.

(Nancy) #161

Hello Everyone,
I’ve was diagnosed with Type I when I was 10 years old. I’m now 68 and have been on an insulin pump for over 20 years. For most of the time I used a Medtronic, but their sensors are not good. Recently I switched to an Omnipod and Dexcom and am very happy. When I was younger before any of the medical advances I felt isolated and alone. I’ve completed 11 years of psychotherapy and tried not to let the disease rule my life. Let’s see, I’ve skied, hiked, bicycled, etc. it hasn’t been easy, but I’m thankful to be healthy and alive. I’ve always had very stressful jobs, but I retired in 2016 and am loving my life as a retiree.

(PamK) #162

Hi Nancy. Just wanted to let you know that while I was diagnosed at age 2 1/2, I have a friend who was diagnosed at 6 months! Although she is younger than me, she always won the camp contest for who had diabetes the longest!