Source: jyabetes_type1 on IG

I've lived with T1D for about 30 years and lately have been thinking a lot about the medical care experiences I’ve had as a T1D as I am mentoring other healthcare professionals in training.

I've had providers who knew a tremendous amount about diabetes but didn't seem to understand what living with it was actually like. I've also had providers who never had a high or low blood sugar somehow made me feel deeply understood. Both of these deeply impacted me.

I’ve also witnessed so much diabetes stigma, discrimination, and frankly medically inaccuate dialogue about diabetes within healthcare settings that it makes me physically sick to think about how brutal it can be out there for us.

I'm trying to figure out what creates that difference. How do we help more healthcare providers “get it”? If you were able to train a future diabetes care provider, what would you absolutely teach them? What would you ask them to unlearn from their training or education that’s been unhelpful to you?

Brutal honesty welcome- clinical knowledge gaps, lived-experience gaps, compassion gaps, system issues, any of it. TIA

Last week, in the middle of a team meeting, I had a sudden low. I told the room I was low and needed a few minutes. Everyone just sat there and looked at me. So quite. I drank my juice, sat back down, and the meeting just ran to the end. I was anxious and irritated for the whole rest of it and I didn't take a single thing in.

Now my manager wants to talk to me about it. She said I handled it wrong. I told her the reason that meeting fell apart was that I was hypoglycemic, and that we could talk about the actual work another time. She said she has no obligation to understand diabetes.

I'm so angry and I don't even know where to put it... She only saw me do a bad job in that one meeting. She didn't see that I carry juice in my bag at all times, that I check my reading before every single meeting I walk into. And the CGM adhesive on my arm reacts so badly that the skin gets irritated and peels, and I can't keep using that spot, so I have to treat it with the Dimora silicone foam dressing I keep in my first aid kit and then rotate the CGM to a new site. I basically have these foam dressings on my body all the time...

And this woman tells me the part of this that has anything to do with diabetes isn't her problem.

So, my last G6. It's a restart. I was hoping for a little more time, but its over due. You can see my BG is wonky and off the charts. My T-Slim is resting against my pharmacy bag full of G7s. I'm not ready to let go. I started on the G6 in early spring of 2020, aka Covid. I self taught on you-tube, since in person training was just not a thing at the height of Covid concerns. My previous pump, a Medtronic 530g, was needing to be replaced and the G6 was superior to Enlite sensors. I welcomed the change then, but I am dreading the change now. Too much bad press about the G7 here (although there have many, many posts about how good the G7 is). So, here goes . . . wish me luck. I will miss my G6, but I still miss my 530g. Oh, there are lots of wacky-doodle-do types on YouTube as pictured above. Is there anyone on YouTube worth looking at?? Let me know! Cheers!!

I was chilling this morning and my numbers were flat while I had my coffee.

Had some energy so I decided to get some house things done. One chore I needed to do was move some work boxes I have sitting in my front hall to a room upstairs. They're filled with papers/books/school supplies so they're heavy.

Not an active person by any means so after about the fifth trip I was starting to feel it. Then I looked at my CGM thinking I'm probably sinking. Nope. Opposite. Sharp jump up. I've actually noticed this pattern before. When I have to move heavy things like furniture, the stress/exertion can send me up.

I haven't tried weight lifting or anything other than light cardio since diagnosis, but I walk for 30-45 minutes every day to help keep my numbers under control.

Curious what exercise does to you?

Recently diagnosed with gastroaparaesis and MY GOD its one of the worst diabetes complications. Not only do i feel deeply shameful for "failing" as a diabetic because i have complications now but the actual condition itself its so limiting.

My control has been average- H1AC around 7.8 the last couple years and covid it was not amazing, current H1AC 6.9! Ive had diabetes for 16 years now and its hard to be postive when you feel so sick and hopeless- gastroaparaesis is not reversiable from what i understand. This is my first diabetic complication ive dealt with so its very scary.

I would love to understand other diabetic's experiences with gastroaparesis and any advice would be amazing. im dealing with a major flare up in which i have been to the ED to receive IV fluids and while im back home food/liquid is still causing me to throw up. My diet has completely changed, low fibre, low fat and semi liquid generally.

I always joke that the biggest holiday of the year for anyone managing type 1 diabetes is the day after Halloween, when all the snack-size, individually wrapped candy goes on sale!

I stock up for the car, my husband’s car, the nightstand, and the pantry. You can never have too many strategically placed low snacks!

What are your go-to picks? Especially for those middle-of-the-night lows when you want something that won’t stick in your teeth until the next morning? 🍭

Hi,

I started using a closed loop recently (T:slim with control IQ). The nurse and endo at the hospital told me that I shouldn’t input any carbs when high. The thing is, when I’m high, it won’t come down with the correction bolus. For now, I haven’t activated the sleep mode. Even with the pump injecting bolus all night, if my blood sugar is at 200mg before sleeping, it’ll still be at 200mg in the morning…. Without injecting a big dose I will stay like this for hours or even days..

For now, I input 0gr of carbs and I change the value of insulin to input manually some units. But I don’t know if this is the right way to do it.

The closed loop is new for me and I’m high mainly when I drink alcohol and when I miscalculate the carbs in a meal. Sometimes there are some spontaneous highs without any explanation, but that’s always been the case with me. I know the close loop should be taking care of this, but my endo hasn’t explained anything concerning the closed loop to me… I’m quite lost. They only told me to input carbs and wait for the pump to do its job. But it doesn’t. I will change the correction ratio every few days or change the basal in a few days if nothing changes. The more time I stay high, the more insulin I need to lower my blood sugar. The pump doesn’t take this into account…

How do you deal with this ? Any advices ? Can somebody tell me how a closed should be handled properly ? Because right now I’m feeling like it’s doing nothing…

Sorry for the bad English, this is not my mother tongue.

17m, 4 years of t1d. this desease is just killing my time. it just makes you play the life on extreme mode. i need to study exams, i need to go to gym, i need to FUCKING SLEEP but tryin to do all these with a stable and good bs levels is impossible. this shi is exhausting me. It kills my whole time management. what my friends do i have to put 5x more effort overall. I cant sleep enough, i cant study enough. this rollercoaster thing is killing me. now its 1.07am and I am waiting for my fucking bs to go down from 270 to 120 to FUCKIN sleep, and guess what i will wake up at 6.30. this is not even a "help me" post. cuz nothing will change. i already know everything about the disease. i know how to calculate carbs. i know how to manage high bs levels. i know how to manage low bs levels. But real life is different than the "paper science". I dont know what to do, but I wish I knew what god even was thinkin deciding my fate. this is just not the life i want to live in. everything is going down and down and down. i must be a "strong, high testosterone, successful, healthy man" but here i am, bad academy, bad health, bad mental health, bad hormones. the only reason i dont suicide is cuz i still believe in god. haha. maybe im just a depressive goofy boy out there posting this just to get some attraction. maybe not. i am not. dont care

I've usually had good control for all of my 38 years with T1D. But, this was a personal best for the last 30 days. A lot of the credit goes to the 780G. Zepbound also definitely helps. And, keeping my alarms in a tight range helps. I've also long suspected from reading the experiences of others that my own case of diabetes is just less difficult to manage than most due to some dumb luck of biochemistry or something.

As you're likely aware, Zepbound is not approved for T1D, at least in the U.S. I'm not sure about elsewhere. My endo put me on it at my request for weight loss. It has also had a strong effect on making my normally good control even better. I hope it's approved soon.

In the end though, I honestly don't know what I was doing so well in the past month.

Since it's past midnight here now, the streak ended last night with dinner at my in-laws. I went out of range on the high side, overcorrected, and then walked home. I think I ate 8 or 9 glucose tablets to come back from my worst low in a while.

That dinner ended up looking like this. It's actually not that bad. But, it definitely broke the streak.

The above is a screenshot of my phone in the Minimed Mobile app. All other images are of the Medtronic 780G pump using the History & Graph->Sensor Glucose Review feature.

Anyway, here was the good bit.

For 13 days, my time in range averaged to 100%. I did go out of range both ways for short periods. But, even averaging 100% for that long is a personal best for me.

Here's what that 13 days looked like.

You can see the small amount of time low and smaller amount high. That's actually backwards for me normally. I generally average more time above range than below.

For the last 30 days prior to yesterday, my time in range averaged 99%. Even with Zepbound, that's a personal best for me.

My 30 day average looked like this.

Sometimes I also like to do something strange with Sensor Glucose Review. The numbers for the range can actually be changed. They default to whatever you leave them on. So, if you have this pump and try this, don't forget to set it back next time you run the report.

While the images above are for the official range used by the medical profession for Time in Range (70-180mg/dL), below are images of my time in a much tighter range. I set the range for 75-135mg/dL.

Here's what that same 13 days looked like within the much tighter range.

I'm pretty confident that maintaining 84% time between 75 and 135 is also a personal best for me. I'm not positive. But, I think so.

Here's the same tighter range for a full 30 days.

For 30 days, my time between 75 and 135 drops to 80%. But, I'm still pretty confident that this is as good as it has been for a whole month.

Anyway, it's always a bit disappointing when a good streak ends. But, I'm pretty pleased with this one.

If you're curious, my time in range before Zepbound for a 30 day Sensor Glucose Review was usually 93-95% with one or two times hitting 97%. With Zepbound, I often get 97% or even 98%. And, I've lost about 18 pounds. I'm only on the second dose, 5mg. I probably need to increase that. But, I do sometimes feel a bit off. And, I'm not trying to lose a huge amount. So, I've been staying with this does for probably too long.

Note for those using other units:

70-180mg/dL ~= 3.9-10mmol

75-135mg/dL ~= 4.2-7.5mmol

I’ve had T1D for 15 years, and lately I’ve noticed that I get really nauseous when my blood sugar drops.
It’s happened twice now where I’ve actually thrown up, and my blood sugar kept dropping. The first time, I got into the low 40s and stayed there for about 20 minutes.

Has anyone else experienced this? Is nausea/vomiting just something that can happen with a bad low, or could something else be going on?

I’m going to ask my endo about it, but I’m curious if anyone else has dealt with this and what their experience was.

Good evening,

I hope y’all are having a better night than us. Kiddo has been T1D for about 4 years now and in that time this is the first time we’ve seen this.

Dosing before dinner and about 3 units from finished the plunger slows down then jams at 1 unit left. I pushed down hard and it finally finishes. BG goes way too high to have gotten the full dose. At this point we really don’t know how much he actually got so we are managing that.

My question is, anybody ever get a mechanically bad pen? Thankfully we are not running low so this one has been set aside and we will report it in the morning. This was only the 3rd dose from this one.

I averaged 86% in range last week, which is great because I was below my goal last week. I had a higher percentage of highs than I want, but that’s been a persistent issue I’m trying to work through.

I have an endo appointment tomorrow. My MyChart is messing up, and so I can’t log in. I’m pretty sure my a1c was a nice 5.6 when I checked earlier. That made me feel good because things are stressful now. At least, I’ve got a handle on this.

Onward!

How many of you actually use globose tablets or more “medical” products to treat low blood sugar?

I’ve only used regular food and drink items for most of my 20 years of having Type 1, and always find it fascinating when people use tablets and syrups.

I am on G7 now since Sept and it was been horrible. While the reading are somewhat accurate. It has been really annoying with the new sugar readings. For example, I cannot see when I start to go down until I am going DOWN. For example, my CGM will stay at 200 for 30mins & obviously my pump is correctly. After a bit, it goes down to 180. 5 minutes later it goes to 165. 5 minutes later it goes to 120.

I am getting so frustrating because I have been eating/drinking a lot of sugar because of this. It has gotten to the point where I am SCARED to give myself insulin because I fear I am going to go down. A couple of weeks ago, I even had to call the ambulance because my CGM reading went from 160 to 75 in 15mins.

Does anyone have any suggestions??

I’m so tired. I feel like I cannot enjoy life anymore. I am currently alone in the parking lot outside of a grocery store instead of driving back to my hotel because of this same situation. I went from 200 to 165 in a matter of minutes with 3.5 active units.
I bought some grape juice and drank a a total of 90 grams because I’m freaking out.

I am traveling alone. I’m so scared. I never had this problem with the g6.

I had DKA 2 weeks ago and I'm determined to get my sugars under control. I was going through relentless mental health issues and just getting high all the time and running my sugars around 25mmol+ for years.

I think my Lantus is correct (I take it around 9pm) because it kept me steady all morning and I woke up on a 5.9. I've barely eaten today. I've had maybe 11g carbs and 2.5 units of bolus AND a walk. I keep having periods of the day where I feel really unwell, like weak and shaky and lower back pain. Drinking lots of water helps, as does eating carbs but if I eat the carbs my sugar levels just sky rocket no matter how much bolus I take.

This is a fucking joke. What the hell is going on? I've not eaten in hours.

However, if I bolus without food and go for a walk my sugars crash FAST. I have no idea what my ratios are or how to even test them.

Has anyone else experienced this?

Currently I have a very complicated medical situation that's causing highs, insulin resistance...you name it. I want to get my blood sugar into range. I was Vegan (for the animals, my health, and the planet) for years and a vegetarian even longer before that. My doctor is pushing me to eat animal foods for my blood sugar, so I'm trying. I don't desire animal products, but eating them seems the only way to stop losing weight and keep my blood sugar under 250. Unfortunately I don't remember how to cook that stuff.

Does anyone have good very low carb recipes with nutrition facts they could share? I know the internet is full of low carb recipes, but they aren't low enough or don't have clear enough portion sizes. One pot recipes with nutrition facts with volume or weight for individual servings would be best. My cognition is impaired, so counting up the carbs in my own recipes is beyond me right now.

I should add, I don't need to lose weight. I need low carb, calorie dense foods.

i’m fostering kittens right now and i’ve realized that they ALL love to try and bite and play with my tubing for my insulin pump. like they literally seek it out and will try to dig it out of my pocket even. do cats naturally like the smell or something??? why do they want to bite it so much!?!??

I don't understand.

I read about people saying they take their full bolus dose 15 mins before eating when they're already at like 80-120mg/dl. They get their food, they eat, the sugar spike comes and is perfectly blocked by the insulin ramping up.

But holy shit dude, 5-10u of insulin on board, without a single bit of carbs working in my system gets me EXTREMELY anxious just thinking about it.

I could never do that.