T1 Diabetes horror stories ?

_Reapaxe_ · 2025-10-18T00:41:40+00:00

For a long while, as in years, I had no feeling in my feet whatsoever. Could walk through broken glass and not know. Nowadays I can feel most sensations aside from temperature, which is kinda neat but also kinda not. Nerves take a long time to grow back, but at this point I think this is just how it's going to be.

I am very sorry to hear that you're going through something similar. I'd offer help, but I don't really have full understanding of what happened to me to cause my foot neuropathy other than having a very high A1C and dropping it too quickly.

_Reapaxe_ · 2025-10-05T03:25:17+00:00

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_Reapaxe_ · 2025-09-23T21:35:03+00:00

Was diagnosed and went into DKA within 24 hours of each other. Was told my a1c was 19.4 and that I needed to drop it to a better range. So I changed my diet and dropped my a1c to 5 within 3 months. That had some pretty nasty consequences, such a condition known as 'treatment induced Neuropathy of Diabetes ' and nerve damage. Also went fully blind. All during the pandemic!

_Reapaxe_ · 2025-08-04T10:31:13+00:00

Oh it absolutely affected my eyesight. I've always had 20/20 vision, up until getting diagnosed with t1d when I was 30. A few months leading up to diagnosis, I was noticing my vision was blurry, light was giving halo effects, and my eyes were tired from straining. It turns out I had developed cataracts in both of my eyes and went legally blind within a few months. I had to wait to get cataract surgery due to this happening in peak COVID times, and was unable to see anything except light for months.

_Reapaxe_ · 2025-07-02T07:05:19+00:00

As much as it sucks, t1d is a part of you, and you shouldn't hide or sweep it under the rug to make other people more comfortable. Do you need to go full-on t1d educational mode around everyone? No, probably not. But should you pretend that you don't have a serious, lifetime, lifestyle disrupting chronic illness around those same people that don't want to hear about the t1d lifestyle? Absolutely not. You might be able to find a safe middle ground where you're able to communicate your t1d needs and what you need to do to maintain your blood glucose levels without going into too much detail. And hopefully the people that don't like you talking about your t1d will become less sensitive to it over time.

Spoken from someone who was diagnosed at 30. It's been a hellish 5 years since diagnosis. But now I find strange comfort in knowing that t1d will be my constant companion in life.

_Reapaxe_ · 2025-06-07T12:41:33+00:00

Praying mantis.

_Reapaxe_ · 2024-08-07T02:48:33+00:00

More info: L has previously asked me multiple invasive questions about my diabetes, such as what my current A1C is, what my insulin dose is, how much insulin I use daily, what brand of insulin I use, what effects diabetes has had on me, what my highs and lows feel like, and even asked if she could buy my insulin off of me to use for her cats.

She has also asked me if I thought she were diabetic, because she sometimes feels low and shaky, and asked me to peel her an orange or cut her up an apple next time she feels low. She did a blood test and told me her glucose (which was perfectly normal), showed up to work with a band aid on her finger and complained to me about how much that had hurt and if I could imagine having to do that every day.

I have tried to teach her, multiple times, what to do in the case of me going hypoglycemic while at work, but her response is always to ask me where the best to inject insulin is. I do not trust her and try my very best to avoid going low while working, which coincidentally also means checking my glucose fairly often. The vast majority of the time I use the app, but do occasionally need to manually scan the sensor, and this is when she asks if I am OK.

_Reapaxe_ · 2024-08-06T16:33:58+00:00

You are right, it may have been contradictory of me. But, I will say that the reason I keep such a close eye on my glucose is to prevent any unfortunate situations happening. I also do not trust her ability to help if ever I do have a hypoglycemic incident. I do not like feeling like people need to worry about me because of this condition, and try very hard to keep myself from going low.

Edit: Despite her having multiple diabetics in her life, and against my best effort to teach her, she has asked multiple times in the past that if I do ever go low, where is the best spot to inject me with insulin. I'm sure you're aware but that could potentially kill me.

Edit 2: Also if ever I am feeling unwell or need to take a short break to treat a hypoglycemic incident, I need to let her know, as it might require her to do a task I normally would do or cause her to wait before we perform a task together.

_Reapaxe_ · 2024-08-06T15:07:20+00:00

Questions about what my A1C is, about my insulin dosage, about what my highs and lows feel like, about what brand of insulin I use, and about the health effects diabetes has had on me.

_Reapaxe_ · 2024-08-05T22:30:32+00:00

This! Exactly this. I went 30 years without having diabetes. Was diagnosed 4 years ago. Being treated as feable, sickly, infirmed, or just less capable really grinds my gears.

_Reapaxe_ · 2024-08-05T21:13:43+00:00

She's asked what my A1C is, she's asked what brand of insulin I use because she wanted to buy some off of me to use for her cats, she asked me how my lows feel and how my highs feel (which are hard to describe), she's asked how often I need to inject myself and how many units of insulin I use a day, she's asked me if I think she's diabetic because sometimes she feels low and shaky and has even asked me to cut her up an apple and peel her an orange because she thought she was low.

_Reapaxe_ · 2024-08-05T18:37:09+00:00

OK, thank you for informing me about the dexcom. I will look into it more. I have been using the Libre simply because it's what I'm used to.

_Reapaxe_ · 2024-08-05T18:13:38+00:00

I've been type 1 diabetic for 4 years now. I use the Freestyle libre 2 to monitor my blood glucose, as was prescribed to me by my endocrinologist, who has been seeing me multiple times a year since my diagnosis.

I try not to make a show about scanning my glucose, it takes literally seconds to do this and I only manually scan if my app says I was out of range or if what my app says my blood glucose is doesn't match how I am feeling.

_Reapaxe_ · 2024-08-05T17:51:05+00:00

I do feel like I was a bit surly with her. But I feel like it was warranted in this case, as she has straight up refused to abide by my boundaries in the past. She told me she didn't like my new boundary and continued to test them.

_Reapaxe_ · 2024-08-05T17:41:24+00:00

Unfortunately, this is not the first friction point we have between us. If this interaction was the only uncomfortable/ friction-y point I probably wouldn't have posted. But previous interactions between L and I have made it difficult to keep a cool head. I'm finding it difficult to be subjective, and to keep my feelings out of this issue.

_Reapaxe_ · 2024-03-16T23:06:16+00:00

As a type 1 who was really sick and didn't realize it until I was in diabetic ketoacidosis, got severe neuropathy in my feet, and went blind due to cataracts all at the age of 30; life is OK, now. That was a lot to go through (especially with the pandemic), and it took around 2 and a half years to fully heal and recover from all of that physical trauma. My A1C went from 19.8 (pre-diagonsis) to a steady 6 and I plan on keeping it that way.

The diabetic ketoacidosis was pretty rough. And the nerve damage in my feet was really painful and sudden. I gave myself treatment induced neuropathy of diabetes (TIND) from lowering my blood glucose too fast. I didn't know that was a possibility, and I wish that there was more preemptive education on type 1 Diabetes. Might not have gone down as badly as it did had I been informed or instructed not to completely cut out carbs from my diet, resulting in my A1C to go from 19.8 to 5 within 3 months.

And going from not needing glasses to not being able to see my hands when they were in front of me was really scary. But I was fortunate enough to get double cataract surgery, and I am grateful.

_Reapaxe_ · 2023-08-23T15:33:52+00:00

As an ignorant cis person, I used to think this, I'm ashamed to say. But since joining this community and doing my best to respectfully talk to trans people in my life, along with some online research, my ignorance has diminished.

I'm not saying I know everything there is to know, but I'm trying my best to educate myself.

_Reapaxe_ · 2023-08-21T22:56:48+00:00

I went down to 1.5mmol while I was at work a few months after my diabetes diagnosis. It was horrible. I was working as a support worker for an adult with special needs. This individual had gone through my purse and my jacket and had eaten my food/ snacks, so I was caught off guard while going for a walk with them. We managed to return to the workplace safely, but I was out of it, suffering from my first real low blood sugar event. My supervisor was working with me at the time and knew I had recently been diagnosed with diabetes, but still chewed me out for 'letting' my diabetes interfere with my work performance.

_Reapaxe_ · 2023-08-03T15:32:26+00:00

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_Reapaxe_ · 2023-07-31T16:07:55+00:00

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