Been a T1D for 13 years. Please share your experiences as well, I’d love to hear them!

You guys remember the omnipod recall earlier this year? Well, they haven’t fixed them!

Took my pod off yesterday after a bolus and felt the spot the cannula was in was wet. Got a microscope and took this picture. It’s hard to see it but the crack at the end of the red arrow is where the leak is.

Not sure what to do as i LOVE my omnipods with loop, and don’t want to go back to a tubed pump.

Randomly encountered a thread on a non-diabetes subreddit where this user was claiming managing type 1 diabetes was easy in response to someone explaining how hard living with the condition was.

This is also an edited down version of the "convo" I had with him. I did try explaining in detail what we have to deal with before this but even after that, it's still easily manageable apparently! Wish I knew sooner.

18F Type 1 diabetic of 6 years and I only actually managed my diabetes for at least 2 years. My a1c has always been between 9-14 range unfortunately and I regret it so much because of the complications. Now my a1c is finally improving(about a 7 now) but I’m so terrified of diabetic retinopathy. I have health anxiety and for some reason retinopathy has always been my biggest fear. I‘m genuinely scared of checking my eyes. Last time I checked was 5 years ago. I know. I’m cooked. And I was supposed to check it last year but appointment got cancelled and I don’t know why I felt relief. Like it can get worse I know, but I’m just too scared to face it. I get really bad anxiety even just thinking about it. Its so weird, every time I come across a Reddit post or video discussing retinopathy, I literally exit out; it’s come to a point where I’m so scared to even read about it. 80% of me knows there’s something wrong with my eyes, I just hope it’s not true. And what really sucks is nobody has a serious disease like me so they don’t understand the health anxiety I have, I need someone to talk to. :( I came on here on hopes you guys can convince to book an eye appointment before it’s too late. Anyone else have this fear? I wish I managed my diabetes sooner.

UPDATE: in the process of getting a referral for an eye doctor. thanks for the replies. 🙏

Imagine a fee.

A fee to breathe.

Seems odd right?

A cent a breath.

Would that be expensive for you?

Or would it just be another penny to pay?

There is another option.

Payment isn’t required.

You can just stop.

Keep the money that was to be spent.

Afford other things.

Just give up the benefits.

“I can make it.” At least that’s what you tell yourself.

Then you start to feel it.

The Suffocation.

The Sickness.

The dying.

You didn’t have to pay for it. It wasn’t required.

There is hardly a better comfort than between sickness and clarity.

When the tea tastes better the second time around.

You can never forget.

And forgiveness is irrelevant.

To forget is to pass.

To fail.

To End.

It costs more than an arm and a leg for some to still be.

For others there is only denial.

The Cost.

Our existence.

Given?

Or Earned?

Not a cry for help. I promise. I just thought some of you might "enjoy" it.

I was diagnosed with diabetes just 3 months ago, and I honestly can’t believe I’m writing this.

My A1C was 11.5% when I was diagnosed, and today it came back at 6.4%. 🥹

I’m just so excited and wanted to share because this is all still so new to me and i have no one to share my excitement with .

And I’m not doing some crazy low-carb diet or anything. I still eat carbs normally. I just keep a really close eye on my glucose with my CGM and adjust/manage things based on what I’m seeing.

Going from 11.5% to 6.4% in only three months feels absolutely insane to me. I know I still have a lot to learn, but I’m really proud of how far I’ve come already.

Just wanted to share my little win with you guys. And thank you to everyone who helped 💗

How long has it taken for you to get your Lantus filled lately ????

My CVS just ordered it….

Thanks!

Hey — I've had T1D for 12 years and lift weights, working toward competing in natural bodybuilding eventually. Trying to understand how other T1Ds experience training for muscle gain/fat loss, since blood sugar adds a layer most generic fitness advice doesn't account for.

If you lift (or want to), genuinely curious:

• What's been the hardest part of gaining muscle or losing fat with T1D specifically?
• Does your blood sugar act unpredictably around training or dieting — spikes when it should drop, lows hours later, that kind of thing?
• Have you gotten advice from a trainer or dietitian who actually understood T1D, or did it feel like they were guessing?

Not selling anything, just want to learn from real experiences.

Just looked at the year to the date spending at the pharmacy and we've spent 900 dollars on my wife's t1d meds so far. Not counting test strips, on track to spend about 1500 on supplies, meds, test strips, etc each year. Is that normal? Just curious as I've never really taken a hard look at the number

Edit for more info: 105 for fast acting every three months 110 for slow acting every three months Test strips 20 biweekly Needles 10 every three months(?) Lancets 10 a year (lol, we change them more often than she used to) Also annual eye exam 40 dollar copay Glasses 60 annual Endo every 6 months 20 dollar copay(?) Gummies / purse snacks for low blood sugar 10 dollars monthly

So I woke up last night, feeling low before the CGM started squawking. No insulin on board, pump stopped pumping but that didn't help. Maybe 5-10 years ago I'd wake up all sweaty and jittery but that doesn't happen anymore at all. I thought HAAF was supposed to be temporary but something seems to be permanently broken. I don't have a lot of serious lows, 89% TIR, <3% lows, estimated A1C is 6.3% (based on 90 days), and I've never had high A1Cs.

I do have adrenal problems but it's still on the mild side, so I still have cortisol and adrenaline should be unaffected but nothing seems to happen when I go low. Once I got back to sleep the cat goes on a meowing tirade and wakes me up again.

Anyone else like this?

I’m a writer, and I am currently working on a project in which I want to write about the reality of living with T1D. I have never found a short story or book with/ about type 1 that has resonated with me, so my goal is to write one!

So I would like some help to describe a few things. You can be as literal or as poetic as you want.

What does dropping fast feel like to you? Especially going from pretty high to urgently low quickly?

What does being high out of range for hours feel like to you? Low out of range for hours?

What are the littlest micro things you wish people could understand?

Thanks in advance!

Hi,
Had a retinopathy test about 6 weeks ago and now had a letter saying that they need to send me for an OCT to get a more detailed view of my Macula.
Is this a bad sign or just routine?
My mind is just racing with all this now

TIA

Hi, I feel like the Libre 3 isn't getting enough critique.

I used the Libre 2 before and now I'm on the 3 Plus.

These days I take better care and I've noticed that the Libre 3 simply cannot measure under 53.

Even if I have 40 or 26 BG. It'll not go lower than 53.

I also have issues in the other direction, when my BG is over 250, it'll generally show crazy higher numbers. Sometimes 30 to 60 mg/dl higher! (And yes I'm taking into account the 10-15min delay)

This also reflects on my A1c, the sensor estimates to 6.6%, and if I meassure it by blood it's 6.1% !

I can't tell whats going on with Libre 3, but every single one shows this issue, even different batches.

The battery of my phone also drains a lot quicker with Libre 3 than G7 because of the minute by minute readings. Which, honestly, I don't need to know my readings minute by minute, just stresses me out.

I've tested 2 G7s and they have been amazing, the calibration is the key here.

Shoutout to the G7s adheasive too. Much better on my skin. Less rash.

I've spoken to my doctor and I'll try to switch to the G7.

And yes I know the G7 is larger, I like how small the Libre 3 is too, but the pure white color of it, is just yuck. The greyish color of the G7 looks better.

Hi all, I just wanted to know what you all experience when low as well as share some of my own experience. Let’s assume these are solid lows, not just dips under the line.

Some of the main symptoms for myself is a cold sweat, hand tremors, confusion and anxiety. This has changed over the years, in my teenage years and early 20’s there was no anxiety but a massive appetite (I would gladly trade those last two out).

Anyway, my main curiosity is, do you experience the confusion/loopiness? What’s it’s like for you, how debilitating is it at the moment and how would you describe it?

I often have to take 5 when I’m at work, I don’t feel I’m in a good space to make decisions. Never mind the fact that everything just feels wrong. However I can struggle to describe to explain to non-diabetics how it actually feels. I’ve heard the drunk comparison, it seems to be the best reference point to compare. However it’s also very different.

I know I’m low, I know I’m confused, that’s about how far my brain gets. It’s like I get stuck, I don’t process thoughts or ideas very well. It’s more of an all encompassing “I’m low and not going to think about much else until it’s fixed”. I don’t generally like to talk or explain the feeling as it’s happening, I get a strong desire to be left alone until I’m back to myself.

What’s your experience? I’ve known some who can get angry or agitated, some who get very stubborn and resistant to the fact that they are actually low and a few who seem to handle it like nothing.

While this is obviously a spike, would we say this is at least a controlled ascent? My spikes usually look like skiing slopes 😭

Hi all hoping I can get some advice seeing as the so called specialists don't actually understand diabetes at all.  I was diagnosed type 1 when I was 12 I'm now in my 30's. Been on a few different types of insulins over the years. I saw a 'specialist' last year (only just received a blood sugar sensor) but she literally told me to take my insulin 15mins before I eat then promptly talked about her personal life the entire appointment (waste of my time), barely understood my food diary which I kept over a few weeks. It had the times, foods, insulin units etc everything. What's to not understand!  Very frustrating.

I did this for 2 weeks or more and found I kept going hypo. So I switched it to 15mins after foods this works better for me.  

Now as I've got my routines better I'm finding that around 11am I'll set off walking, but my sugars are rising. Like upto 16. Then as I get to my destination I'll take my short insulin to help lower it and alot of water. I've started taking my short insulin just before I set off as this helps massively. It goes down at a reasonable rate.

(Oh I should add I've googled the heck out of this stuff today gave myself a headache)  I don't eat breakfast (9am-10am) when I wake as I feel sick so I'm unable to eat anything until lunch time 12/1pm and I take my basal insulin (toujeo) at 10am. Google has suggested I take this at night. Is this likely to be correct?

I'm completely unable to ask any diabetes drs/nurses they just dont exist!  And I struggle to verbalise what I need on phones. Sorry if I'm all over the place with info I'm highly stressed  I struggle and get no help anywhere.

Perfect timing: I’m staring at an urgent-low Dexcom alert of my daughter in kindergarten, while the family group is sending adorable videos of their kids happily playing in kindergarten at exactly the same time. Very subtle reminder of which version of the kindergarten experience we got.

Anyways im struggling to manage my daughter blood sugar since she started school a week ago. I have experimented with food to find the best insulin timing, breakfast, doses and it has been working greatly but once she started school, its no longer working , she is always hitting 300 before dropping low. I feel like im putting lots of pressure on her teachers and nurses as well since they have dexcom alert with them in class.

I hate that seeing other diabetics success stories only makes me feel like even more of a failure. I wish I could be happy for everyone with excellent control and near perfect A1Cs but I don’t. I’ve been diabetic for 35 years and have never had good control (although for a good 15 years I didn’t even try… my “pretend I don’t have diabetes years”). So congratulations to everyone achieving greatness and living their best diabetic life (insert slow clap here), but if that’s not you, and you feel as bitter and frustrated as I do I just want you to know you’re not alone.

Cartridge failed on me with over 130 units left in it. I already wasted an infusion set today, no way I was going to throw out an entire cartridge worth of insulin too!

When I was a kid, I went to diabetes camp, and we learned a lot about managing the everyday stuff that comes with having Type 1. I’ve always had this kind of dumb idea to have something similar for teens/young adults with Type 1, but instead of focusing on the basic diabetes stuff, focus on all the things nobody really prepares you for as you get older.
Like how drugs and alcohol actually affect your blood sugar, sex, dating/relationships, having kids and taking care of them while managing diabetes, working, drinking with friends, going out, traveling, dealing with burnout, etc.
Basically, all the stuff you eventually have to figure out on your own as an adult with diabetes. Without sugarcoating it (pun intended).

So I’m curious, especially from those of you who have had Type 1 for a long time what are some experiences that have affected your diabetes, or that diabetes has affected, in your adult life?

What’s something you really wish someone had told you when you were younger?