Type 1'stars R Us

[Marie 2]

@RobertJ There are lots of old timers. They are on this sight and others. In their 60's and 70's and then some. These are people before CGM's, pumps, meters. Before care was that great or a lot known about care. If you go on the Joslin sight it talks about the 50 year medals they gave out and now give out 75 year medals. These are people that had to boil needles and tell by a test strip dipped in urine how much insulin to take for the day. What is surprising to me is the people that lived a long life that got diabetes right before or at the start of insulin being available and still lived a long life. One had been in a coma!

Now so much more is known, and the tools we have make a significant difference in our ability to control our blood sugars. With I'm sure, more and better exciting tools to come!

Medalist Program & Study

Honoring Joslin's Heroes The Medalist Program began in 1948 when the team at Joslin first began awarding medals to people who had been li

www.joslin.org

Early Patients - Defining Moments Canada

Before the first human use of insulin in January 1922, it was exceptional for people with Type 1 diabetes to live more than a year or two. In one of medicine's more dramatized moments, the discovery of insulin has been retold as Banting, Best, and Collip going from bed to bed of the Children’s...

definingmomentscanada.ca

 

[becca59]

Well done on such brilliant control, @becca59. I know you've said this elsewhere but how long have you had Type 1 for? I am obsessed with my mortality and complication anxiety and need a positive story to counter that.

9 years. I’m now 63. To be honest I really believe I am much fitter than I would have been without diabetes. I eat far healthier in moderation. And swim or walk daily.

 

[Nicola M]

Well done on such brilliant control, @becca59. I know you've said this elsewhere but how long have you had Type 1 for? I am obsessed with my mortality and complication anxiety and need a positive story to counter that.

I’ve had T1 for 25 years, I am only 26 but still In that time I’ve gone from relatively good control (as much as you can for a child/teen), to extremely poor control, to much better control and the only complication is very mild retinopathy no treatment required but that’s only due to going from poor control to good control in a very short time period. I had poor control for at least 5 years and there wasn’t many times I was ever below 12.

 

[RobertJ]

I’ve had T1 for 25 years, I am only 26 but still In that time I’ve gone from relatively good control (as much as you can for a child/teen), to extremely poor control, to much better control and the only complication is very mild retinopathy no treatment required but that’s only due to going from poor control to good control in a very short time period. I had poor control for at least 5 years and there wasn’t many times I was ever below 12.

Wow, that's a difficult start to life. I always think it must be weird to have no memory of a pre-diabetes life. I was diagnosed age 12 so I still have something of that, but it now feels like a dream, like I was a different person.

I've only got eye-screening letters dating back four years but each one says 'background retinopathy' but that's all I have for now.

I don't really know what my control was like for the first decade or so but I don't think it was especially good. I can only find HBA1C results back to 2014 and they're pretty terrible until recently (71 in 2014, 66 in 2016, 60 in 2021). Even getting the Freestyle Libre in 2016, I just couldn't hack it. I therefore think even though my control is now what the NHS deems good, the damage from the past twenty years is going to catch up with me at some stage.

 

[Marie 2]

Okay, too funny. We have something called Costco here and it's a "warehouse" store. A large large store that carries things in quantity, but it doesn't always have everything or carry a variety or selection. It's usually a lot cheaper and they focus on their own brand. 1-2 people it can be harder to shop for. 12 peaches in a box, 4.5 Kilogram (10 lb) box of oranges, 24 toilet paper rolls type of thing. Some of it is fine but in some things you just don't want the quantity for 2 people.

So we discovered they had a 1.8 Kilo (4 lb) frozen blend bag of veggies for the same price as a .45 Kilo (12oz) bag at the regular grocery store. Pure veggies, great for me I add what I want to flavor them anyway. I have a large bowl of veggies almost daily. But they have only had the one blend there since we first discovered it about 6 months ago. I've told my husband to keep an eye out for different blends.

Well, they did finally get in more blends..........my husband came home with 5 bags of different kinds, each bag at 1.8 & 2.7 Kilograms (4&6 lb) ...........

He was proud of himself too, he goes I sort of splurged on you, but all of them only cost 27 GBP ($34). We do have an extra freezer because on our island things can be out for months, especially on specialty vegan food at any store. So if you find something you get a bunch because you're not sure when it will come back or if it even will. But I really don't think I needed that many veggies all at once.

 

[becca59]

Well you certainly will not run out anytime soon @Marie 2 and you will be very healthy. Yes we have a Costco here. Used to be a member, but haven’t been for a number of years. In fact I think it was when we were catering for a party for husbands 60th. Still using glasses and paper plates now.

 

[Nicola M]

My insulin pump set decided it wanted to give up today and must have slightly come out but looked like it was completely in. At 10:30am I had an alert to say I was 14.2, looked at my pump and could see it was delivering corrections so thought I'll check back soon to make sure I'm coming down. 30 minutes later decided to check and I was 17.2 looked at my set and could see what looked like bubbles/condensation in the pump set window so instantly went to change it. Thankfully I must have caught it fairly quickly as I haven't gone above 17.2 and am starting to come down nicely now.

 

[Marie 2]

One thing about living here. All sorts of people won't ship stuff to the islands. Even the few major stores don't carry a lot of their items here, some will ship from one store to the store here, but some won't. For example I have posted our Halloween display before and this year we wanted to add an item they don't have here but 1800 are sitting in their warehouse. It's 12 feet tall and perfect to be with our palm trees! A new item we don't have anything similar to, but they don't carry it here and won't ship to the Hawaii store. So I am going to see the front desk tomorrow and beg. Because they have done it before, but we have heard they've changed their policy. But I am also checking into costs with a specialty shipping company that you ship stuff to them and they ship it to us. They are usually very reasonable in price because the normal UPSP, UPS and FEDEX want a fortune, about 4 times it's cost to ship to us.

And my beef with the company is when I pick my location and say I only want stuff here, why do they still show me stuff they have available for shipping but not to here? I am crossing my fingers one of the options works.

 

[Deleted member 527103]

Well done on such brilliant control, @becca59. I know you've said this elsewhere but how long have you had Type 1 for? I am obsessed with my mortality and complication anxiety and need a positive story to counter that.

Why are you obsessed with your mortality?
If it is affecting you, I suggest you talk to someone professionally about it.

Unfortunately, the statistics about how diabetes can affect our lifespan are based on historic data. Much of this will before we had home testing kits, let alone CGM, and fixed mixes insulin doses, let alone extra fast acting insulins like Fiasp and very long acting insulins like Tresiba.
I was diagnosed with Type 1 diabetes 20 years ago. I started on that mixed insulin. Thankfully it didn't last long. I am now on an insulin pump with a CGM (not fully closed loop). I live a very full life with lots of travel, exercise and different types of food.
I have no diabetes complications. My last eye scan was clear. My liver is fin. My cholesterol os fine. My kidneys are fine. I am healthier than my friends and colleagues the same age as me (mid 50s).
I may only be a sample of one but I am definitely not alone.

Please talk to someone about your obsession - these positive stories like @becca59 are good but you need some assistance but it is too easy to get stuck in the Google spiral of negative stories.

 

[RobertJ]

Why are you obsessed with your mortality?
If it is affecting you, I suggest you talk to someone professionally about it.

Unfortunately, the statistics about how diabetes can affect our lifespan are based on historic data. Much of this will before we had home testing kits, let alone CGM, and fixed mixes insulin doses, let alone extra fast acting insulins like Fiasp and very long acting insulins like Tresiba.
I was diagnosed with Type 1 diabetes 20 years ago. I started on that mixed insulin. Thankfully it didn't last long. I am now on an insulin pump with a CGM (not fully closed loop). I live a very full life with lots of travel, exercise and different types of food.
I have no diabetes complications. My last eye scan was clear. My liver is fin. My cholesterol os fine. My kidneys are fine. I am healthier than my friends and colleagues the same age as me (mid 50s).
I may only be a sample of one but I am definitely not alone.

Please talk to someone about your obsession - these positive stories like @becca59 are good but you need some assistance but it is too easy to get stuck in the Google spiral of negative stories.

I see that you were diagnosed well into adulthood, whereas I've had Type 1 since the age of 12 so it's quite different. I know a 29-year-old who's had it for about a year and he's already figured it out, with an HbA1c of 45.

So I get the impression that people who get Type 1 as adults start on a good track, whereas the ones who get it as children start off on a chaotic track. You have to make the difficult transition from diabetes being an irritation you wish would go away to something you have to take seriously and manage yourself. For me it was a messy process. Starting in childhood also means you're used to the very low standards the NHS sets for children with diabetes. It took me far, far too long to realise I needed to operate as a higher standard as an adult.

Even after going onto the FreeStyle Libre, my control was basically awful. My HbA1c was 60 as recently as 2021 because I just couldn't maintain consistent good control. I had two weeks or so of good control, then a few weeks of terrible control, then a few weeks back to good again.

It was only last summer I permanently got things on a better track. The last three HbA1cs were 50, 51 and 48, but that's after literally twenty years of mostly bad control. So I worry that the damage has already been done, and at 33 (if it wasn't for diabetes) I'd be expecting to live another fifty or sixty years.

Can my body really sustain decades more of elevated blood sugar, especially when the first twenty years were so elevated? I eat lots of fruit and vegetables and keep fit, but it just doesn't seem realistic that I won't at least have some nasty complications.

I have had therapy a bit and spent some time talking about diabetes but that wasn't the main reason I had it. I think permanent better control would help me the most. I'm possibly signing up for Eoin Costello's Type 1% program so if I do that, it should help.

 

[Antje77]

It was only last summer I permanently got things on a better track. The last three HbA1cs were 50, 51 and 48, but that's after literally twenty years of mostly bad control. So I worry that the damage has already been done, and at 33 (if it wasn't for diabetes) I'd be expecting to live another fifty or sixty years.

There are many people who have had diabetes for decades, long before home glucose testing was a thing, and who don't have complications.
There are also people who get complications after 10-20 years with reasonable numbers.
So I think it's not only numbers but other factors involved in whether someone develops complications.

With 20 years of high numbers under your belt and no complications, you may well be one of those that don't develop them easily. And with your much improved numbers, I wouldn't expect complications to suddenly start now.

I'm another of those diagnosed as an adult and having a relatively easy time with it, only 7 years ago, so my experience isn't very relevant to you. But let me tag @EllieM , who was diagnosed as a child over 50 years ago and is doing well now.

 

[becca59]

@RobertJ I have a brother diagnosed as a child nearly 45 years ago who tested using urine. So I know what you are talking about. He is however fit and well and has a very positive attitude. Life is too short as it is to worry about what may happen. I agree with @In Response it may be an idea to seek some counselling to help.

 

[Fairygodmother]

@RobertJ, I too used to worry Type One meant that my life would be shortened. Back in 1969, when I was diagnosed, it was commonly assumed that people with Type One would pop their clogs before they were 50.
We didn’t have the tech back then, people were used to following doctors’ orders rather than taking control of their own health and there were very few ways to find out the carbohydrate content of foods. It’s not surprising that Type One was something that brought us face to face with mortality.
I suspect those less knowledgeable days have left a miasma of fear hanging around ready to move into anyone who’s aware that less than perfect control can occasionally cause problems.
If it’s any consolation, my first Type One years were spent mixing ‘healthy food with indulgence in pre-Type One treats like jam doughnuts, fish and chips, lardycake, chocolate bars . . . and I’m still here.
What gives you pleasure (not fish and chips or jam doughnuts, though with careful calculating and split dosing those are still doable)?
The best times are often had when whatever we/I’m doing is engrossing, happy-making, and Type One has to sound a loud alarm to get a look in.

 

[Nicola M]

There's no changing it now, my blood has been stolen for an updated HbA1c, results are pending...

I'll be happy whatever it is, If it goes up so be it, I've had semi-varied results since being on closed-loop ranging from 40-49. I'd be extremely surprised if it stayed at 40

 

[RoughcutAU]

@RobertJ I would tend to agree with you somewhat though every person is different. I consider myself fortunate that T1D only struck me about 2 years ago. I can’t imagine having to have dealt with it all threw childhood and those awkward adolescent/young adult years. Like your mate so far (touch wood) I have managed to get a grasp on things pretty early on.

I am a firm believer that it is never too late to change and each step in the right direction leads to a better journey.

 

[Nicola M]

HbA1c results are in… Updated result is 38 or 5.6%. Absolutely no concerns based on my data.

 

[Marie 2]

Well my pod decided to not work right, sometime before I left for our monthly vegan potluck. I noticed I was higher than I thought I should be but nothing horrible and gave myself a correction. When we got there and I looked I was at 10 and no way should I have been. That means not only did the correction not work but I was climbing. Luckily I had loaded up on Afrezza because of it being a potluck and never knowing what I was going to be eating until it is on my plate. I had 7 cartridges with me so I took all of them which is about 18 to 21 units because I knew I alone had brought a pasta dish and potato salad, plus I needed a correction. Actually a really nice selection this time, marinated tofu, jack fruit dessert, quinoa salad, coconut pudding, a green bean dish, kale, beet and eggplant brownies, to name a few. Now I could have passed on the brownies, but a beet brownie, a kale brownie and an eggplant brownie? I really wanted to try them so I tried the kale and the eggplant one. Both were delicious!

It worked out because on the way home I ended up at 6 with an arrow slanted down so I had a piece of ginger candy. Of course since I hadn't switched my pod out yet and Afrezza is gone in 2 hours I started climbing by the time I got home. But I switched it, gave myself some insulin and got on my bike and it worked out pretty good.

The eggplant brownie tasted like a lucious brownie. She said a neighbor grew eggplants and kept bringing her some and she isn't used to cooking with eggplant. She loves to bake so she looked up desserts online using eggplant and found the recipe. The marinated tofu dish won the best dish. It was really good and simple. Toughened tofu slices with soy sauce, slivered jalapenos and black pepper and I think 1or 2 other things were with it too. I should have taken a picture of the ingredients because it turned out to be a nice combo.

 

[becca59]

Making me hungry @Marie 2
Well done @Nicola M you must be delighted with those results.

 

[Marie 2]

Good morning everyone!

 

[RoughcutAU]

Good Morning!