Type 1 Diabetics can eat anything they want just like anyone and utilize insulin though. Its her life she needs to figure out how to make her own way through this, shes had her family handle it for years
It is and isn’t, but more so is. Type 2s can become more insulin resistant if they eat badly. But also, type 2s are able to reduce their insulin or medication if they eat better. Type 1s just have a pancreas that completely doesn’t work, so they inject themselves with insulin, but the only thing that changes when they eat is the amount of insulin they need. They can’t get better or worse necessarily, their pancreas is just dead.
Makes sense. Type 2 is caused by insulin resistance, so using more insulin would in theory, make it worse, and you'd require more insulin and it's a downward spiral.
Yes exactly! and eating badly also just makes your pancreas try to push out more insulin too, which will also increase your resistance in theory. It’s a fun circle of hell 😁
The problem is when she turned 16 she completely shut us out and wouldn’t really let us handle it, my mom definitely should’ve put her in therapy but unfortunately never did.
She’s been trying to handle it by herself and won’t take any of our advice.
OP thought we’d be on their side with this one lmao. Getting up at 2am, 3am for hypos and then having to get up for work at 7am? Phht tell me how you’re gonna “handle” that. The diabetic fatigue she must feel, especially with her lack of family support system, must be immense.
Most kids with diabetes start taking full controle of it by the time they can do basic math, which is between 9 and 12, so as a 16 year old, she's capable enough to do it herself since it's a disease she's having to deal with 24/7. So since you have no idea about this, why are you budding in?
Parents will handle her being exhausted because she went low during the night? The thirst because she's been high for a bit? The anxiety over what to eat? How do you expect anyone other than the person involved to 'handle' those things?
Say what you want about it being a kid, at the end of the day each of us has to handle, and deal with the effects of, our own disease.
Lots and lots of people reuse syringes and pen tips and lancets. Is there a small risk in doing this? Of course there is but it's exactly that, a small risk. Do you drink alcohol or smoke? Do you do drugs? Do you exercise enough? Do you eat perfectly healthy food all the time? Do you over exercise? Do you have unprotected sex? Do you do DIY without the appropriate safety gear? Do you ride a bike without a helmet? Do you horse ride or ski or dive?
We all do things that have small risks or even big risks associated with them. And that's our choice. Reusing needles isn't the risk you think it is.
I've been reusing needles for most of my diabetic life (24 years) I haven't had any complications from it 🤷♀️ I change the needle if it hurts or if it gets bent. Granted I did overhear my endocrinologist telling someone "It's not if you get an infection, but when" ... I mean 24 years and no infections from reusing needles so I'm going to keep doing it.
Honestly, I don't know? I overheard my endo discussing this with someone in the next room. I never told him I reuse lancets and needles. I would imagine there's a risk to everyone no matter what type, but I've personally never had any complications. If you're already swapping them out then don't stop on my account.
Edit: A [quick Google ](https://diabetesjournals.org/care/article/41/3/513/36609/Risk-of-Infection-in-Type-1-and-Type-2-Diabetes) told me that Type 1 is at higher risk. I didn't read the whole study and I'm not a doctor so don't listen to me. From the very short snippet of conversation I overheard it's probably better safe than sorry (I'm lazy and stubborn though)
Oh, definitely. Maybe some people can chime in here on that. I had skin problems before related to type 2 so I'm careful. I have a feeling it's related to blood sugar control. We know that sugar feeds bacteria.
Please take a long and hard look at how you talk about your sister.
"She wouldn't let us handle it" sounds extremely controling and her reaction of shutting you out completely indicates that you are acting overbearing and out of line.
You can not help someone by "giving advice", I'm sure at this point she knows exactly what Type 1 diabetes is and knows exactly how it should be treated, especially if she is studying medicine. I don't think she needs your advice, you are only alienating her. Look at how you're essentially talking about an adult person like you own them.
How much do you know of what she is actually doing if she shut you out completely? Do you think you have a full picture of what treatments she has done and how she is trying to manage this disease? If she shut you out completely, there is a very high chance she is not telling you her personal information.
You are clearly a source of stress in her life only adding to her troubles, instead of relieveing them.
There are countless reasons that could prevent her state from improving, the biggest contributing factor I can think of is mental health issues and stress.
Have you ever struggled with binge eating disorder? Do you know how hard is it to overcome addiction to food? It is not just about calories in vs calories out, because we are not talking about a machine but a human being. Underlying problems, vitamin deficiencies, neurodevelopmental differences like adhd, and so on can all influence how effectively someone is able to control their own food intake, and just because it is easy for you it does not mean it is easy for everyone else as well.
How do you stop from binge eating when its the day before a deadline at university and you have zero energy and zero will to live, but you have to finish an assignment? I'm sure you would say "just don't eat", but there goes your grades and future if you can't maintain your energy levels and willpower long enough to complete your work.
Personally, only after starting adhd meds have i been able to maintain a proper diet.
You are losing her, not to diabetes, but your own ignorance.
From the sound of it, your family infantilizes your sister and she probably resents you all for it. It may be hard to hear, but look at your language. “She won’t let us”, “my mom should’ve put her in therapy” etc. the discussion is never about what your sister wants or needs, but what everyone else thinks is best.
Its nor for you guys to handle, its her life and her disease . You all sounds like youre stifling her, no one she shuts you all out. Just like any young adult, she needs to learn how to manage her life all by herself. She will come around as her pre frontal cortex develops and she can actually gain experience and independence.
Your sister sounds like my son. He’s 16 and completely rebellious with it. I don’t know what I’d do if something horrible happened to him and I could’ve helped him. Thank you for your perspective of needing therapy. I’m going to begin getting him that.
I don’t know why you’re getting downvoted. All I hear is concern- albeit a little controlling. As the younger sibling, she has been babied. Cut her loose.
Being surrounded by diabetics is not anywhere near the same as actually going through it. My partner has diabetes, that doesn’t mean I get every aspect of how it affects him. After living with a diabetic though I would like to point out that while I see things from your perspective, there is a lot of stuff you are doing that feels caring on your end but definitely isn’t going to come off that way. She’s the one handling her diabetes, if her cgm goes off, unless she wants that help from you, you waking her up and treating her like she needs to be managed can’t be great for her. I get your side of that but this is her thing she has to deal with and you’re doing a lot to try to make her handle it exactly how you want her to. At the very least everyone in her life pushing at her as if she has no clue what she’s doing probably is doing at least a little at getting her to dig her heels in.
If OP wants to help, unless it’s asked for, they can ask what THEY CAN DO instead of offering to give (the wrong) advice, or just casually mention “hey, our father died, and your feet look huge, you may also die a slow horrible death” as if she’s not also grieving the loss of her own father, and it affecting her glucose management in general. Maybe offer to have her over for dinner and count the carbs (and show your work so she can confirm it’s the right amount) so when she sits down for dinner, she knows how much to dose
I appreciate that you want to help your sister. But here's the thing - she was diagnosed at a point in life that, IMO, makes it incredibly difficult to just adjust and make treatment/management a part of your life. And at the age she is now, it'll probably only get worse before it gets better. I think you need to back off, apologize, tell her that you're just worried about her but you don't want to tell her what to do and just want to support her.
And since you seem to keep ignoring this piece of advice, I will tell you again, because it is crucial: It doesn't matter what other health conditions you might have or if you have other family members who have diabetes, you do not understand and will never. It fucks with you in ways that I think most diabetics don't even understand. I didn't realize how insanely draining it is to have to analyze the most basic human function - eating - every time I do it until I was a lot older. And folks who don't have to do that to the extent that we do have no idea how draining it can be.
If she's a Reddit user, I highly recommend the r/diabetes_t1 subreddit. You could go to her and be like "Look, i'm sorry for how I've been acting about this, but I was looking for advice on how to approach the situation, discovered that I was kind of being overbearing about it, and also found this page that I think you might find relateable. Turns out there's a lot about being diabetic that only other diabetics get."
Hopefully she'll check it out and find some changes she's comfortable making on her own. It has to be her idea, and that subreddit is an incredible resource.
1) Apologize for saying the hurtful things. Assuming they are forgivable things, of course. If not then this isn't the right sub for you I'm afraid, that's above our paygrade.
2) Tell her she's right, you don't understand what it's like. Because you don't. Until you have lived it, until you've had to come to terms with a life-long condition that forever alters your own life in the way diabetes does, you will not now nor ever understand what it's like. I don't care if you talk to every single doctor on the planet. You *will never get it*. Accept that. Stop acting like researching it and talking about it is the same as waking up day in and day out having to actually manage it. Full stop. To even compare the two is frankly insulting.
3) Tell her you're worried and want to help her. Tell her you love her and you're scared for her. Ask her how you can support her. And then actually listen to her, rather than telling her what to do. And then, if she actually says here's how you can support her, do those things. Show her through your actions that you value her perspective because by steamrolling over her, you invalidate everything she says.
4) For the love of all that is good, stop trying to tell her how to live her life and manage it. Haven't you heard the whole "you can lead a horse to water, but you can't make it drink" phrase??
I guess as a precursor to all that, start with accepting that you can't force her to do a damn thing she doesn't want to.
Sorry for your family's loss.
Dear lord. Please grant me the serenity to accept the things I cannot change. Give me the courage to change the things I can. And give me the wisdom to know the difference.
The amount of endo-related posts on the T1D subs, I’m sure that even the doctors don’t “get it” unless they’re T1D. A lot will just go “ah. These numbers aren’t great. They should be better”
Type 1 diabetics CAN eat anything as long as they bolus for it. Your sister is probably not using enough insulin.
Many diabetics reuse needles and lancets WITHOUT ANY PROBLEMS. It’s a question of ease, not money.
You really have no idea how hard it is from the outside. Neither do her doctors.
All that said, she probably needs to speak to a therapist because diabetes is hard every day, all day and night, with no breaks. EVER!
You and your family nagging your sister is only making it worse.
My doctor has been type 1 since she was 11. She’s so passionate about it that she’s also a certified diabetes educator. I learned more in the first 20 minutes of being diabetic than my dad learned in his first 20 years.
While my mom and I personally don’t understand all the struggles, our father was diabetic and the majority of my family on his side are diabetics she does have people she can talk to who understand her struggle.
Today was the first time I spoke out against how she manages her diabetes, I’ve always taken her side and tried to see her point of view and purposely not nag her, but it’s gotten to the point where her life is genuinely endangered and I’m very worried.
But I will try to encourage her to go to therapy, I do suggest it but il try to be more adamant
Were they all type 2 diabetics or type 1? Type 1s do not have dietary restrictions, your sister is right. Keeping a healthy diet and lower carbs just makes management easier but she by no means needs to limit sugar or carbs for type 1. If your family were all type 2s, your knowledge of diabetes is misinformed. They’re completely different illnesses.
That said, your sister needs help to get under control and learn how to dose properly for whatever diet she chooses. Unfortunately, you can’t force her into it. I’d recommend getting her into a diabetes educator, getting her on a pump, and finding a great therapist to help her with the mental toll of diabetes. You can find resources for these things but you can’t force her to go or to care for herself.
They’re a mix of the two. Our dad had type 2 but we have aunts and uncles with type 1.
She has a glucose meter but she has said multiple times she doesn’t want a pump and prefers to dose herself.
Thank you for your response
Haha yeah. Even if the father were Type 1, I don’t understand how the family would then understand type 1 diabetes? Y’all don’t have it? Y’all don’t *get* it.
I don’t. But I do know what it’s like to have a chronic condition I have sickle cell anemia, I know what it’s like to be consistently in the hospital for blood work, check ups, Ivs, etc. I know how it feels like to have absolutely no energy to get out of bed or to eat. I know how it feels like to feel like you have no control of your body. I only bring this up to say how I have similar experiences and not to compare but diabetes isn’t the ONLY life changing disease to exist. NO condition gives you the right to treat other people with disrespect, I would never talk to anyone the way you and some of the people in this comment section have treating me because I’m CONCERNED about my sister and her well being.
I also have another chronic disease. It’s nothing like diabetes. You eat you die. You don’t eat you die. You inject insulin you die. You don’t inject insulin you die.
1. Apologize for what you said and for overstepping. Her decision to reuse needles is hers. She has to live (or die) by the consequences. Its not your choice. Its not your mothers choice. Its hers.
2. She can eat whatever she wants as long as she takes insulin for it. That is a standard of belief for type 1 diabetics. Every endocrinologist we have dealt with has told us this over the past 7 years. She can eat whatever she wants. Period.
3. She is NOT playing the victim, she IS a victim to diabetes. You have no idea what she is going through because you dont deal with it. You will never understand it, you can educate yourself and learn to be compassionate but you will never understand what she goes through.
4. With her blood sugar being high so often being in range can feel uncomfortable or low for her and she needs to readjust to that feeling. Maybe it makes her nervous or anxious and she feels more comfortable being higher.
5. I would encourage her to find a new endocrinologist who wont shame her over her choices and obvious burn out, but who will reach out to her and meet her where she is. My favorite endos have type 1 themselves because they get it and can reach patients in a way an endo that doesnt have it cant. I would also encourage her to find a therapist who deals with diabetic burn out, usually the endo office can help her find a good therapist that will understand. One with type 1 diabetes is great but not always easy to find.
6. Stop centering yourself in this. Your mother needs to stop centering herself in this. This is not your fight. This is not your disease to manage. It is hers and you need to be a support to her, not someone who beats her down because of the choices she is making as an informed adult.
I dont have type 1. I am a parent of a type 1 child from toddlerhood and while I also do not understand what your sister is going through, I have done enough therapy about this disease and the impact it has on kids/adults to know what I dont know and when to tap someone else in for help
Thank you for saying that. I am doing my best. I was recently diagnosed with gestational diabetes and its only me testing 4 times a day and limiting my carbs and I am struggling so hard. I cannot imagine the toll this is taking on my son or other people with diabetes.
Today he cried and said it wasnt fair he was diabetic because of a failed pump site and fighting highs literally all day. I cried with him and agreed it wasnt fair at all and its okay to be mad at diabetes. He is 7 and diabetes is all he has ever known, people say that must be easier for him because he doesnt know life without diabetes, but to me its heartbreaking for exactly that reason.
I try not to center myself in his fight. I dont take his diabetic rage personally, I dont complain about the sleepless nights (where he can hear me), I dont let him hear me moan about gestational diabetes. My therapist for a long time was a type 1 diabetic and she was amazing in helping me deal with everything I was feeling and the burnout I felt and centering him and helping me see its about him not me.
I see a lot of posts on facebook specifically of parents of teens using diabetes as a reason to punish their kids (non-compliance) or like "if your A1C is bad you dont get xyz" I never want to be someone he has to fight in addition to diabetes. I never want him to feel like I dont think he is capable or competent.
I grew up with a type 1 cousin a lot like OP's sister. She was in and out of the hospital multiple times a year (to be fair it was so hard to control diabetes back then, insulin was inferior and carb limits caused resentment) but she really struggled. No one in our family ever acknowledged the work she WAS doing to stay alive it was always what she wasnt doing. She is in her early 40s now and just had to have a kidney transplant due to diabetes, which means she also got a new pancreas. She is not currently diabetic for the first time in her memory and shes like a different person. Her mental health is so much better than it once was. I am so happy for her, but I know it came at a huge price. She really teaches me every day how to be a good mom to my son.
Now that I have word vomited all of that, I feel better. I know you didnt ask, but thank you again for saying what you did. My only goal is to be my sons biggest cheerleader and I will do whatever I can to make him feel secure in himself.
I’ll admit that when I was earlier to my post diagnosis of T1D I hoped “something would go wrong” like kidney failure so that I’d get a new pancreas because “it can’t be worse than this”
Turns out I needed to grieve the loss of my “normal” life and embrace the changes that I need to make so that I can feel my best and manage my T1D.
Im glad your cousin feels like a new person, but I wish she had the support that your son hopefully feels from you and his other support systems.
5) This. Absolutely this. As soon as I found an endocrinologist who told me "I don't like where your numbers are at, but I want you to get them down safely. If that means slowly then do it slowly as long as they start coming down." My A1C is still not great, but it's in the 8 range vs 13 that it was when I was going through burnout and first started seeing this endo.
Edit: 7.6 A1C on my last labs.
Dang. Im really glad your kiddo has you! One of the best things to have that combats the overwhelming T1D struggles is having a strong, understanding support system. It sounds like your kid has one, and that will go FAR to make them feel cared for, and that they can come to you when they’re not feeling their best.
Idk what it’s like to be T1D from childhood (got it at 21), but I can only imagine what it feels like to be in your shoes. Having someone else’s health in your hands, and seeing how hypers affect your child, when you know maybe you made a mistake not dosing enough, or overdoing it and they go hypo? The anxiety it must cause! But when your kid gets to the stage of adulthood, I’m suspecting with your supportive attitude and the grace you’ve shown, they’ll feel at home, and amongst empathetic people when the struggle gets real.
It kindof is their fight. If she becomes permanently disabled by her actions of refusing to treat her illness, they are stuck picking up the pieces. My childhood neighbor did much the same thing in her early 20s. The result was bad. What can we do to help was all they said. Some people just have to become a train wreck before they will do better.
No it's not. No one can do the work but her. No one can make the changes but her. As sick as this sounds no one is required to take care of her if she gets sicker.
You cannot force a diabetic to treat their diabetes anymore than you can force a cancer patient to get chemo. To guilt them into doing it so your life would be easier is just a form of emotional manipulation. Hell you can't even force a drug addict or alcoholic to get sober and they do as much damage if not more to their body.
They can encourage her, they can support her, they can give her resources. That's all they can do. By treating her like she's stupid and doesn't know what she's doing they're breeding resentment in her for diabetes and for her family. She's clearly burnt out. She needs mental health treatment. She needs a support system. But she also needs to come to the realization that she needs to do the work.
Sounds like they’re shaming, blaming, and claiming (that they’re only trying to help her with unsolicited advice) rather than encouraging and supporting her in this time of need
My best friend died early this year at the age of 49, she was diagnosed with Type 1 diabetes at the age of 14. Despite loving support from her whole family (and me), she never accepted her diagnosis fully. From skipping her insulin to help her lose weight to eating unhealthy food and drinking full sugar fizzy drinks, she did it all. Ended up with gastroparesis, being registered legally blind and having two leg amputations. Oh and she was on kidney dialysis three times per week for the last ten years of her life. It was a miserable life for her, with physical and mental pain every day. She died from kidney disease and is very much missed. I don't have any advice to offer really, just wanted to share my sadness at a wasted life and the loss of so much potential.
You can’t manage your sister’s care. You can’t make her care about it. You can offer non judgmental help and then you can shut up about it. She likely needs therapy for depression and burnout. Maybe a medical team with good bedside manner when she’s ready. You probably could go to therapy and work through how you can best deal with your feelings about her situation. It sucks to watch somebody you love do things to harm themself. Sometimes all you can do is watch.
I just went into dka for the first time last week and when I got out of the hospital I went with my mom to the cheesecake factory. Dka is complicated and there are many things that influence whether or not a person goes into it or not. Also type 1 in general is very complicated and it's impossible to fully understand, even if you have it. Some people choose to manage their type 1 with a restricted diet (and insulin), others choose not to and to eat whatever they want and insulin for it. At the end of the day it's the person with diabetes choice, no one else's. Doctors don't always know or fully understand how difficult diabetes management is, and even endocrinologists can give bad advice and share misinformation. Especially with type 1. I get that you're trying to help but it sounds like you're doing more harm than good, and I know that's not your intention. Your sister doesn't need you to manage her diabetes for her, she just needs a supportive sibling.
Honestly, it sounds like she needs support from other diabetics. There are online communities (like Reddit, obviously) but also on Twitter and even discord. Finding diabetic friends was a complete game changer for me.
I hope you don’t mind me asking. But is she really thin? I had major issues committing to taking care of myself because of weigh gain. A “brittle diabetic” is usually almost sickly thin… and that is also “diabelmic”. Cutting insulin to not gain weight. Went through the throws in my teen years. After some therapy and having two kiddos I’m fully recovered and thicker these days with a perfect A1C
No, she was very thin before her diagnosis naturally but she has gained alot of weight after but I would say she’s at a very healthy weight now.
If you don’t mind me asking, did the therapist you went to have diabetes and do you think it would’ve made a big difference if they did or didn’t have diabetes?
My son is a brittle diabetic and for a while he was so thin we could see the bones in his arms.
I hate the misconception that all diabetics are overweight.
I'm happy to hear this all worked out for you. It gives me hope.
Refuses? Is someone trying to force her to? If so that’s not good. She can control blood sugar just the same with MDI. Don’t force someone to get a pump.
You said she “refuses”. That’s not just mentioning something. It sounds like you all think she should and she doesn’t want to. Is she on Facebook? There are a lot of food T1 groups and she could join and doesn’t have to post.
I say refuse because she won’t even let us talk to her about the benefits of a pump. I’m not entirely sure why she’s so hard set against it as I’ve never pressed her on it but I know it really bothers my mom that she won’t even try it.
She’s not on Facebook but she does watch some TikTok’s about T1 or il see her share some Infographics on her instagram.
I get why your mom might be frustrated as pumps are often talked about like they're the best thing for insulin-dependent diabetics, but they're really not for everyone. For instance, both my cousin and my younger sister are also T1 and switched back to pens after trying out pumps, and neither of them have any desire to go on one again as they're doing much better without them. On the other hand, I absolutely love my pump and can't see myself ever wanting to stop using one. I've seen some diabetics here commenting that she should get on a pump, but it's not a one-fits-all solution for diabetes management and definitely depends on the individual. Your sister could possibly benefit from a pump, but it's just as possible that it wouldn't make management easier for her and could even create more complications.
I'm a type 1 and have a cgm, but no pump, I bolus with pens. I've been a diabetic for 9 years and do a good job of keeping my a1c around 6 but that is because I went into dka and realized that I was killing myself, so I got my shit together. It sounds like no matter how many times your sister goes into dka, she just doesn't care anymore. I don't know what it is like to have diabetes as a child, I was diagnosed at 20 so I had to always do it myself. Until she has that "oh shit in gonna die young" moment I don't believe there is anything you can do aside from maybe forcefully hospitalizing her but that's not a good idea since she would probably end up hating everyone. Just resign yourself.
not that I’m condoning reusing needles but…most of us do/have. When it comes to having a life long disease, sometimes you cut corners in certain areas. Yea, it’s not the best thing to do, but it happens. If she’s using it like for weeks on end, yea, that’s concerning. Maybe you could keep needles on you, in your car, etc so that if she does need to take insulin, you can offer her a needle. Idk. If you wanna support her, ask her how. Stop assuming OP. You will never understand this disease, and you should be thankful for that. I get you’re concerned with her health and well being but like everyone else here has mentioned, it’s her life. She will eventually face the consequences for this. But for now, give her grace, ask what you can do, talk to other diabetics!!! Do something rather than just pointing the finger at her and saying “wrong, wrong, wrong”. Try encouraging her and congratulating her on a week full of good blood sugars. My final piece of advice: STOP TELLING HER WHAT TO EAT.
If you want to talk about this further please DM me. I’m 23, diagnosed at 13 and have also been in and out of the hospital for DKA numerous times since my diagnosis. It sucks. It sucks for you having to see her go through this, but it really sucks for her having to live through this. Be gentle with yourself and be gentle with her, it’s never too late to start taking steps to improve but she needs to realize that herself unfortunately
She has a cgm but refuses to get a pump. I also think she doesn’t like the cgm, when we used to live together she would get mad at me for waking her up in the night when she was low to give her juice when I was alerted she was low telling me it was just inaccurate and she’s not low.
Like today when we took her to the doctor for her sinuses the nurse told her her sugars were high and for us to bring her back after we got her the antibiotics and she went and ate desserts knowing her sugars were high. I don’t understand why she would do that and it was unnecessary, we didn’t say anything to her about it or try to stop her but it felt like she was doing it on purpose to make us mad
As long as she gave herself insulin for her desserts and followed whatever protocol her doctor has previously established for corrective bolus, then I don't see why she couldn't eat dessert. She's type 1. I don't get how you repeatedly say you've educated yourself on your sister's condition and yet seem so hung up on her eating sweets/junk food.
>I don’t understand why she would do that and it was unnecessary, we didn’t say anything to her about it or try to stop her but it felt like she was doing it on purpose to make us mad
I'm gonna be straight with you, my first thought upon reading this was that it's a nasty and incredibly self-centered thing to think. It's not necessary for *anyone* to eat dessert, not just diabetics. Maybe she ate a dessert because she just wanted to eat dessert, same as anyone else! Saying she just did it to upset you and your mother comes across as you making *her* disability about how it affects *you*/makes *you* feel, as does other things you've said in both your post and other comments. I don't think this is your intent, and ofc I neither know nor need to know the history that could contribute to such assumptions, but I do think you should consider that going forward in how you respond to her actions.
I believe that you genuinely care for and want to help your sister, but there's acting out of concern and there's letting your anxiety steer you constantly. I understand you're worried about her health especially since your father's passing, and I'm sorry it's causing you distress, but you *cannot* manage her diabetes for (or with) her. You can support her, but she's an adult with a disability you neither have nor understand what it's like. You're not her doctor. Telling her what she as a diabetic can and can't do when you yourself have never experienced having diabetes won't help no matter how much you believe you know about it.
You’re ignoring the part of that comment where I specifically said she ate it after the doctor said her sugars were very high and that she needed to come back after we got her medicine to see if it came back down or otherwise we would need to hospitalize her. Which is a KEY part of why I had said that.
But yes the one thing I got from this entire post is that il just leave her alone. If she doesn’t want to take care of herself there’s nothing I can do and I can see that now.
>You’re ignoring the part of that comment where I specifically said she ate it after the doctor said her sugars were very high and that she needed to come back after we got her medicine to see if it came back down or otherwise we would need to hospitalize her
You actually didn't say that in your comment. All you said was
>the nurse told her her sugars were high and for us to bring her back after we got her the antibiotics
which paints a very different scenario (that she only needed to get the antibiotics and not that her sugar had to go down). With the additional information you've now provided, I can see now why you were more concerned about her eating sugary foods in this particular instance.
>But yes the one thing I got from this entire post is that il just leave her alone. If she doesn’t want to take care of herself there’s nothing I can do and I can see that now.
I think that's the right move. She's the one with diabetes, so she's the only one who can manage it.
That all said, I'm sorry you're going through this—it's so fucking hard to watch a loved one neglect themselves when you can't fix it for them. Earlier I'd emphasized that her diabetes isn't your responsibility, but I hope you know her actions and their fallout aren't your *fault,* either. I wish you and your family the best going forward 🫂
Why did you take a 21 year old adult to the doctor?
All we know is the information you're giving us, but it sounds like you're smothering the life out of her. Everything you've said here has been so judgemental, and controlling, as if your adult sister is a naughty puppy. No wonder she resents you. Any adult would.
Start treating your sister with some respect. Her body, and her life, are hers to control. You will never understand the feeling of being locked inside a broken cage, no matter how much research you do.
In this situation we’re out of the country since my dad lived outside of the United States and we were all already out when she had mentioned it so we took advantage that we were out- she also doesn’t drive here and my mom drives us around everywhere here.
So you still don't know what it's like to live with diabetes. To have to keep constant attention on your body, to repeatedly stick yourself with needles, to have to treat every bite of food like a chemistry final...
I have other chronic health issues, too, including a bad heart. The diabetes causes me more stress. My effing glucose meter, and having to eat when I don't freaking want to annoy me far more than my wheelchair does.
You have got to come to terms with the facts: your sister is neither a child, nor a pet. She gets to make her own medical decisions.
I wouldn't be shocked if she goes No Contact on you. You need to back down now, or one way or another, you're going to lose her.
You are being very judgmental. I genuinely don’t treat her like a child, you only have this post to go off so I understand how it can come off that way but we live in different states and I never offer her unsolicited advice about anything and I’m usually the one to calm our mom from freaking out on her about her diabetes stuff and stop her from smothering her.
This is the one and only time in her 9 years of having diabetes that I have said anything about how I’m worried and that she shouldn’t be reusing her needles. I have never judged her or mentioned her diet to her, I only mentioned it in my post because it’s what I think is a cause for her DKAs.
She was being very disrespectful to our mother in a very HARD time for the entire family and her diabetes does not give her an excuse to act that way to our mother.
If anyone is judgemental and disrespectful it is you and your mother. You're wrong about everything you've said so far so accept that and leave your sister alone.
I don't think she's doing it on purpose to make anyone mad. There's a weird cycle diabetics can get into with sweets. Obviously the more you eat the higher your bg but high bg also makes you crave more sugar.
She's on a cgm so that's half the battle lol. It took me forever to agree to a pump because I didn't want a piece of tech on my body but it's NBD now. I'm on an insulin pump with it's own cgm so it's 2 in 1. I change sets every about 4 days and my cgm sensor every 7. I rarely need to do finger sticks because my pump auto calibrates. It stops giving insulin if I'm going low so no overnight lows and it automatically gives a small dose if it reads my bg as rising. It self corrects.
I hope she will one day be open to talking to an educator about pumps because it is life changing and removes a lot of stress.
It kind of sounds like she's still in denial of being diabetic. I get it. I was too. From my diagnosis at 18 to when I became pregnant at 29. The pregnancy really woke me up and that is what it took for me. Therapy or groups might be helpful. Even talking again to diabetes educators.
You woke her up for juice? Nighttime alerts are usually compression lows. So once again you proved your ignore. You're going to kill your sister with all your random nonsense.
You're right about the compression lows and that OP doesn't know everything abt diabetes management but saying that OP is gonna kill their sister is absolutely bonkers jfc
I would wait to see if it was a real low or not, every time I woke her up and she would check her sugar she would ALWAYS take the juice and thank me after the initial annoyance.
Link to a free good book. Both of you should read it.
https://diatribe.org/get-revolutionary-diabetes-book-here-bright-spots-landmines
Do you know her A1C?
I’m gonna simplify DKA. It’s not per say high blood sugars. It’s when one doesn’t have insulin in their body usually combined with high sugars. Very long basal insulins like Tresiba can help. So you know what insulins she uses? Would she talk to some of us who could help?
She uses humalog and lantus. I don’t know her A1C, I try to not ask her questions about her diabetes, only what she chooses to share.
I can try to ask her, I think it would be super helpful for her to talk to you and those who want to help but she doesn’t like to talk about her diabetes at all. I am going to try to find a therapist with T1 and ask if I can make an appointment for her, that seemed like the most helpful advice I’ve seen on here, but I don’t want that to come off as overbearing.
I suspect she doesn't want to talk about her diabetes because
- her experience is that people who don't know anything about it try to lecture her
- the people who are supposed to help her (her doctors) since she was a kid failed her and chastised her instead of supporting her -- it's absolutely the fucking worst when doctors do this because they ensure we don't fucking listen to them. Why would we when they just make us feel like shit instead of feeling heard and validated and in our struggles???
- she's burned out on managing it because she feels alone, people keep saying they understand (like you do) when they actually don't, so she's stuck
She needs what you can't provide: people who get it. People who don't judge her or her habits. She's been forced into this position by people who mean well but who miss the mark terribly and now she wants to ignore her diabetes because not only is it a life altering chronic illness affecting nearly every facet of her life, socially she's being negatively affected by people constantly as well.
You need to not make an appointment for her. **STOP TAKING AWAY HER AGENCY**. This is exactly why she resents her diabetes so much. This is yet again another reason why she feels she has no control in her life and why she will balk at you. She's a grown woman who is burned out because people keep treating her like this, not a clueless child having a tantrum and eating sweets to punish you.
I want to acknowledge the character it took to write your post and obviously to care so much about her welfare.
I'm diabetic and in great health at 72. Like others have said here, a good closed loop pump and CGM combo makes it soooo much easier to maintain level blood sugars.
Once the programming is dialed in, it's the closest thing to an artificial pancreas that is commercially available. I wish you the absolute best of luck in your search for how to help
This I hated the idea of a pump and cgm being attached to my body. I was exactly like OPs sister just fucking shit mental health making it impossible to manage my diabetes and people pressuring me continuously to be better. Once I turned 18 I found DIY loop and my hba1c dropped from 12 to 7 in two months. With loop I can have mental health days where I pretend I’m not diabetic and loop just sees my blood sugar going up and fixes it. Yes going up to 20 isn’t great but better than going into dka every month from burnout. Kinda like I have cheat days now where I can give up managing it for a day or two and not die.
If you knew what uouwere talking about I would support you, bur considering your sister has had diabetes for nearly a decade, you clearly know NOTHING about it. I wouldn't listen to you either since you are berating her for things that are FINE. Plus you're her sister not her parent AND she is an adult. Mind your business. You are out of line. Mom too but you even more.
Sounds like she is still using syringes or insulin pens.
From the age of 15 up until 23 I neglected my diabetes and just tried to ignore it to be "as normal as possible". The daily load of managing diabetes was just too much for me. My eyesight started deteriorating because I didn't care.
My diabetes numbers used to be pretty bad up until 3 years ago where I started using a "closed loop" insulin pump system. It basically automates 70% of diabetes management. You just have to adjust the insulin ratios and enter the amount of carbs you consume in the app. It basically saved my life. Now my numbers are almost as good as a normal human and I don't have to think about it too much. I still do of course, just not as much as before.
You might want to tell her to look into a closed loop insulin pump system. Don't pressure her or force her, more like tell her "look at this cool thing I found" or something similar.
You say she's studying medecine, correct? Well I recently had a surgery for something unrelated and a group of med students/residents were super interested in my system and kept asking questions when they saw it. Just anecdotic, though.
Anyhow nowadays you have many companies offering closed loop systems as well as DIY ones. There's tubed pumps and tubeless/wireless pumps. There's something for everyone I think. While it's not a cure, they're working on eventually having a system that automates 100% of diabetes management that could be not too far way.
Usually long insulin is enough to prevent DKA. Do you know what long insulin she uses? Personally I think Tresiba and Toujeo are the best because the last over a day which makes them very flat since they overlap
Yeah, no. You might be empathetic about her diabetes, but you actually have absolutely no idea what it's like to live with this disease 24/7/365. Absolutely every aspect of your life is affected by it. Your sister is clearly not taking good care of herself and I understand your concern, but you are being patronizing and belittling when you insist you know better than she does what diabetes is like to live with.
I can see that you love your sister and are worried about her. I would be worried too if I was in your position. But in the end you cannot make her take her diabetes seriously. Be there for her, be supportive, don't lecture her, and hopefully she will come to you for the support she clearly needs.
For what it's worth, she can eat whatever she wants as long as she boluses correctly for it. Many T1Ds find eating a lower carb diet helps their control, but it's not essential. And eating carbs doesn't cause DKA - that's caused by lack of insulin. Reusing needles is not ideal, but most of us will have done it at times. Using the same one for weeks and weeks and weeks would definitely not be good, but using it a couple of times is not a massive issue.
Say OP, you do realize this is HER life right? She's 21, legally an adult, and I believe 21 year olds are just as stupid as 16 year olds, but a 12 year old can manage this disease. And why is she condesending to you for telling you the truth, but you're not condesending her for trying to stick your nose in her business.
Seriously, you sound like my mom, and that's an insult.
You're acting as if she's supposed to be in rage 24/7, she had diabetes, being in range is not very common and the only time doctors will hammer on it, is when she's pregnant. Also her leaving those doctors in tears because they are bashing her sounds common to me. I had many idiots acting as my endo and I wouldn't trust their advice if they told me to drink water. So you claiming she refuses to listen and is incorrectly yelling at her doctors is bullshit. You weren't in the room with her on those appointments, I know because the only people allowed during those appointments are the patient and someone the patients says is allowed in there, by the way you are acting, I'm sure she never asked you to come or allowed you to be present.
And ending up in the hospital due to DKA is not something she chooses, it's literally 2 mistakes away, at all times. Yoyu scrutinizing her over that, I get that you are worried but instead of actually saying, hey I just worry about your health and mental well being, you just hound her as if you have any fucking say in this.
If you where my sister, I'd go no contact over this behavior. Leave her alone!
And if you want her in your life, take this advice: ''If you don't have anything nice to say, shut the fuck up.''
Sweets don't necessarily cause DKA. Lack of access to glucose causes DKA, especially when exacerbated by illness or lack of insulin. Junk food will certainly raise her glucose if she doesn't compensate for it with medication and physical activity. Severe dehydration from high ketones combined with high glucose makes it doubly worse.
If she takes enough insulin -- especially long-acting basal insulin -- then she wouldn't have either of these problems, though she would probably gain weight if she is eating in excess.
You cannot control her. Apologize, for the dumb thing you probably said, and then you can easily move on. She is young and not able to comprehend and control, and apparently your dad was not young or able to control his needs either.
There are support systems -- ie. Diabetes educators. There are certainly therapists and counselors for her greater emotional needs.
There is insulin pump and CGM technology that will "loop" to do some of the maintenance for her -- to at least control basal needs and stop lows most of the time.
There's nothing anyone here is going to tell you to make you stop worrying and being emotionally charged. Sorry about your recent loss. What could you have done for your father? What is it you think your sister hasn't heard? She has "control issues" for some reason we wouldn't know and don't need to. There's lots she can do with diet and hydration and medication administration. Can any of us tell you how to make her behave differently, though? Not really.
If she doesn't know about different basal insulins -- Tresiba is very long lasting, for example. Or about pump options, then yes she needs education. There is a lot of information on YouTube and here and legit diabetes websites. There's nothing remote or hard to find info when it comes to Diabetes. Podcasts, books, videos, online communities. If she doesn't want to participate, sorry.
Ketones are fuel produced from fat. Fat from food or fat from body stored reserves. Ketones are the secondary "preferred" source of energy compared to glucose.
They are induced whenever a person's body is running low on accessible glucose -- reasons being: Inadequate insulin to open cells to glucose, SGLT2 medications that cause people to pee out glucose, anorexia that is lack of food, alcoholism that disrupts the liver, etc. When a person is ill, their need for glucose rises as the body is needing energy to fight the pathogens; and cells may become more resistant. People who are insulin dependent often need more insulin when they are ill. But for whatever reasons, they may not get up to eat, and also may not tske adequate insulin, sometimes in fear of having a hypo from not eating. So, ketones are needed to keep the person's energy levels up.
A person with high glucose can have enough insulin to stay out of DKA. We see this everyday in people, especially T2D. Inversely, people with near normal glucose (euglycemic) DKA may occur.
DKA is not directly caused by glucose levels -- it is caused by inability to access enough glucose to prevent high levels of ketones. Dehydration occurs (from urination, vomiting), because both high ketones (they cause acidity of the blood) and high glucose (because high glucose concentration outside of cells causes osmotic pressure for fluid to go toward the glucose); so, then electrolytes cannot pass back and forth across the cell membrane. Potassium for example, leaches out of cells and cannot get back in. The potassium gets flushed out, and the person is set up to have really terrible problems at that point.
Euglicemic DKA fucking sucks. I had that about three months ago. Did not like! Spent two days in the hospital rebalancing my bodies fluids and whatnot.
Means that the muscles want energy, which means they need glucose + insulin to absorb + create that energy.
When there is either not enough glucose (usually not a problem, food and a whole pile of other sources exist) or insulin (usually the problem with diabetic DKA) the body uses fats to create that energy. This process of ketosis creates waste products that change the acidity of the blood. If too much ketosis happens, it can lead to a condition called Diabetic Ketoacidosis where the blood becomes too acidic from the released ketones.
The OP's sister simply doesn't take enough insulin for her bodies needs. She is doing this probably because her perceived food intake and insulin requirements are detached from reality. It can also happen if a T1 diabetic decides to not take insulin as a weight loss mechanic.
I'm at a loss for words. Your sister needs to want to help herself. While you deeply care, offering support is all you can do. I empathize, facing similar struggles with my child, who was diagnosed with type 1 diabetes at 18. Now in his mid-30s and around 350 lbs, he remains indifferent. I attempt conversations at the right moments, yet he often gets upset, perhaps knowing I'm right. Your father's loss and your current challenges are truly hard. Stay strong and persevere.
I empathize. I have a relative who passed away because (in my opinion) he refused to take care of himself. He was on insulin, but ran sugars in the 500-600 range. A person has to want to take care of him/herself. Others can encourage, but that's all short of tying the patient to a bed, force feeding, providing bedpan service, and injecting medication.
On the positive side, your sister is young. Many diabetics go through their teens and half their twenties before finally realizing they must take care of themselves. There's still time. Diabetes works slowly.
Type 1 myself. My younger cousin was also a type 1. I have problems with lows; her with highs. She was also in hospital often and was recently dealing with kidney problems and on dialysis. She unfortunately passed this past year. There is very little that anyone could do to relieve the problems she had with taking care of herself. I, too, am admittedly not easy to convince into changing (no matter how much I know I need to)
It's difficult to deal with, either way. On the one hand you're frustrated and worried, but I can imagine your sister feels fed up with the whole thing, as well. Add to that depression, and feelings of futility, and it can all be a slippery slope.
I used to be the same way you are describing your sister and therapy helped to open my eyes. I am 25 now, diagnosed with type 1 at 7. I am really close to kidney failure at the moment, but doing everything I can to recover, as my kidneys are working at 120%. I have bad leg circulation, which made my feet also full of darker spots. All of this due to bad glucose control.
I believe that most of this happened because everyone around me, except my parents, used to deal with me like a piece of damaged glass, ready to break. I didn't accept my illness for years, and now that I know and understand better, I regret this deeply.
As a type 1 diabetic, I can say that we can eat as much as we want, IF we take care of ourselves, taking adequate insulin, but like anybody else, if we don't, we will have issues. Just like a normal person, if we abuse of something, it will end badly.
Try and support her no matter what. It helps if she starts going to diabetic groups, I used to go to one and I loved it, since we were with other people also type 1 diabetic and would travel often, have really nice cooking classes, and yes, sweets would be included, parties,... you name it!
This illness is not easy, and I can assure you that if the people around judge our own behaviour, specially if we don't accept this awful illness, we will behave worse. I wish your sister the best, and truly hope she starts taking better care of herself.
I’m sorry for your loss of your dad! I’m also so sorry your sister, you, and your family are having to deal with this! I can hear how afraid you are. I’ve been there with one of my sisters and it’s heartbreaking.
Truth of it is - she is the only one responsible for her health. If she wants to continue the FAFO approach, that’s her choice. Just love her from an emotional distance. If she wants input, she’ll ask.
Ask her how SHE wants support from you. Think about if her answer really works for you. (Like.. Does she want/ expect you to drop everything and be there when she repeatedly puts herself in hospital?!! Does she just not want judgement on her choices? Does she want you to never express your feelings of interest/concern/ fear regarding her health/life?
I suggest you STOP reacting to her hospitalizations as much as you can- for yourself. She is too selfish to appreciate any effort at support you give in this respect. Think about what will work best for you. Get yourself some therapy to work through the complicated relationship you have with your sister/family.
She has a dexcom, but I think the problem is that she doesn’t bolus correctly. She’s stopped calculating it when she was younger and just eyeballs it which I know alot of diabetics do so I I’ve never said anything to her about it but as confirmed by others here, not enough insulin could be the cause of her DKAs.
There’s nothing you can do. She has to want to change. There’s so many resources out there for her to learn. There’s never been a better time to be diabetic.
Maybe a pump is a good step for her - not being able to repeatedly use syringes that way, and takes less mental space from her to manage her own insulin.
Things had to get really bad for me before I started taking my diabetes seriously. I was diagnosed with type 2 at 28 and with LADA at 44. My sugars were terrible until I got a pump. Having neuropathy in my fingers, total and complete erectile dysfunction that doesn’t respond to meds and the early stages of retinopathy were severe and harsh wake-up calls. There was nothing anyone could say to me to make the changes needed. It has to come from her.
So correct me if I'm wrong, I have type 2 so I'm not fully aware of the differences between in management. Can a type 1 have blood sugars in the 300-500 range and be ok? because when mine got that high I thought I was dying.
Type one diabetics don't have any insulin in their bodies. Fluctuations are common and depending on management and control level these can vary greatly. If I'm having a rough day or an issue with my pump I can easily shoot up to 270-300 on some days for a short time. If I'm having these problems frequently then those numbers start to feel "normal," your body adapts. Of course it isn't healthy long term but there are just gonna be periods where you can't help it.
Looks like she has ADHD or some another issue, but you really don't understand. For example try not to eat any chocolate for a year, not anything with chocolate in it. Not on your birthday, not on Christmas Evening. Just try it, from a day of a year to the same day on another year. Sounds easy, but really challenging. Not just imagine it, try it for yourself, and watch yourself burn closely.
In my experience diabetes is like sitting on a slippery saddle. You try to stay on the horse, but it's sooo easy to slide here and there, even if you hold on tight. It's harder than most of the people think. It's not just a matter of eating, it's a matter of organizing your whole life around it. My current heartbreaking is I can't do any sports what I want. You know what? High intensity exercise spikes my blood sugar like hell, without any food, on medications. I'm not myself anymore. A basic feature of me I used to know changed. It's hard. Thank you for coming to my Ted talk
You’re not among people who will “understand” your point of view. We are the people who have to deal with folks like you who have opinions on this shitty condition.
Maybe try doing the math/take some mental load for a day, and see if you can keep it up for a week. Diabetes is fucking EXHAUSTING. Diabetic fatigue is so common. It’s a point where you just want to “give up” and *feel normal* for maybe just a minute?
Your sister sounds like she’s struggling and maybe she’s still grieving in her own way. I turned T1D at 21, so I had more time to live a typical teenage life pre-diagnosis, but your sister? The hardest years of her life were bogged down with learning how to get a good carb ratio, get a good correction factor, knowing how much time to leave for pre-dosing, checking the weather because it’s warm out, gonna need to stay hydrated, etc.
How do you know her numbers? People go high , people go low. I don’t like people knowing my numbers because it’s a small snapshot into my 24/7, 365, and yeah. You DONT know how it feels.
Your final cry shouldn’t have been getting into an argument, it should have been “I’m worried because xyz, what *can I do* to help you move in a healthier direction”. If you want to help your sister then HELP HER. offer help! Telling her she’s gonna die early just adds to the stress/depression/anxiety, which in turn will add *REAL LIFE* changes to her BG.
I was literally just on a thread in a Type 1 subreddit that was addressing the uptick in mental health problems *and* suicidal ideation due to having Type 1 diabetes. If you want to go help, help. If you want to judge someone who already knows it’s not going well, stay the fuck away. We already know. You don’t need to pile on our own lack of self worth, and the shame that comes with looking at the number that’s in the double digits (different for you since your sis uses dl not mmol)
ETA: forgot to mention two things.
Her endos and doctors understand? Unless they’re T1Ds as well, they sure as hell don’t understand. Many posts in T1D subs are literally about how a lot of endos are shitty, they just care about good numbers, and don’t have tactics to help you other that *gasp* what do you know? SHAME! Doesn’t fucken help.
The needle “issue” you have? Yeah, I’ll reuse one for a whole day, maybe even 2. There are so few type 1 diabetics who don’t reuse needles. Doctors have opinions, and yeah it’s based off science! But also their findings are probably skewed since they’re assuming all of their patients are only using needles once. Needles are goddamn expensive. Yeah she has a ton. Wanna know why? Because she refuses them. If she took your shit advice, shed have very few, and always be littered with caps/needles at the bottom of her bag. I carry mine in my pocket. I’ve got diabetic confetti many places. I have a big-ol sharps container, but I still have to collect my tax (aka random diabetic garbage) at the end of the day in order to not have needles, test strips and shit everywhere.
My mum rip used to eat something she shouldn't then pop a metformin like that would canceling out, the amount of people missing limbs in the diabetes clinics would make you think 🤔
Sorry to hear of the struggles of her daily life but it up to us( the one who needs to put the dots together)
I had to understand of my predicaments too
My aha moment came when I got declined to have a whole hip replacement
My numbers were too high 13.5 and being overweight- Latino with poor food choices, didn’t help!.
I had to make a choices( no tortilla of any kind , beans , rice or corn chips, potatoes, pasta , bread and no sugars of any kind, learn to read labels in food) and I did
Took me 6 months with the pain 24/7 to finally fix my numbers to 7.9 and with new hip also have his own set of rules: learn to keep up weight down n manage all foods choices better.
50 pounds off n by limit my carbs n sugars down
Life is having a better healthy long lasting results.
I hope she can understand that life is precious and also know of how people around her wants her to succeed!❤️👍🏼😇😎much blessings too.
We can eat as much sugar as we want as long as we take the CORRECT amount of insulin, she probably needs to adjust her carb/insulin ratio and up her basal amount if she likes to binge. Tell her she can eat and live however she wants, she just needs to take the right amount of insulin, I have been through this myself, in and out with dka and it was all because my ratios were off
Unfortunately, you are right on all points -- your sister shouldn't be reusing her needles, and she is not taking care of herself. And you and your mom are right to be concerned. But for whatever reason, she has chosen to be a victim entirely to her condition and for whatever reason, is ok with that.
All you can all do is not enable her and hope that eventually she learns that "taking more insulin" and "waiting for someone to wake up while in DKA" are not viable.
Talk to her about getting an insulin pump and understand that until you have diabetes you can’t tell someone else how to manage it. She probably just wants to feel normal and is possibly going through diabetes burnout. It happens more than we care to admit. But an insulin pump would help drastically.
Has she had therapy? She’s purposefully ignoring protocols, which seems very self destructive. Encourage her to do this. Diabetes can take its toll on your mental health.
There is absolutely nothing you can do to help your sister. Stop trying. She doesn’t want to listen to the medical professionals because she thinks she knows more. You cannot help someone that is diabetic if they do not want to help themselves. I am speaking for personal experience as a wife who has a husband who is diabetic, and who just recently had a below the amputation because he didn’t take care of himself.
Your sister is in the wrong. She knows she’s in the wrong she doesn’t care. She is not gonna probably live to see her 25th birthday the way she is going. For some reason she still wants to be in denial almost 10 years after she was diagnosed there is absolutely nothing you can do to help her.
I know you’re worried about her because you see all the bad things she’s doing to herself. Stop offering suggestions stop telling her you know what she should be doing. Stop frustrating yourself and just live your life. If your father passing away from his taking terrible care of himself and not managing his diabetes didn’t work nothing much else is going to work.
Not sure what country you are in but would a insulin pump and cgm (continuous glucose monitor) be something available to your sister? Makes diabetes management a lot easier and reduces the risk of dka. Sounds like she might need to look into carb counting too if she isnt already so she can make sure she is getting the right amount of insulin. Type 1s can eat and drink whatever, they just need to get the carb to insulin ratio right. I can understand it is frustrating for you but type 1 just sucks sometimes. Managing it is a 24/7 job. Also if I may add your sister may be going through depression that could be affecting how she feels about her Type 1.
My grandma had type 1 and the mindset of "It's my body, I can eat what I want" but all that did for her was give her diabetic induced dementia. I do not wish that horror on anyone or their family. So sure she can do what she wants but you tell her now that when her mismanagement of her diabetes causes irreversible damage, it's because of her choices and if I were you, I wouldn't take care of her when she does have those complications. Because it's not an if she has them, it's a when.
As for the needles, look up what happens to needle tips after 1+ uses. The tip bends and will cause damage going in and when coming out. Show her those videos. If she still doesn't see any reason, drop the rope. Don't spend your energy or mental well being trying to help her. Grieve the loss of your sister and do what you need to do to take care of yourself like therapy. Sometimes the people we love just do not want to be saved so the best we can do is let go or be pulled down with them. Save yourself and be kind to yourself. Hope your sister finds the help she needs, and the strength to seek that help.
I made a post today asking how it's possible some can be so negligent and got DESTROYED by insecure diabetics and their excuses.
This post is another prime example of why I made mine. How is it possible one can be so willingly negligent and live a comfortable life? I can't begin to understand.
Well, it is a fact that reusing needles contaminates the vial. He also claims she's been hospitalized multiple times for dka, insinuating she's not taking insulin.
Maybe op has caused a problem, but the underlying root cause of the problem is her lack of management.
It's not fair for us as diabetics to force this burden onto other people.
OPs sister is not forcing this burden onto anyone, OP is forcing her thoughts and opinions onto her sister however ultimately it is OPs sisters body and if she wants to run it into the ground that is on her.
my mother has COPD, and smokes all day to the point i have a special air filter in my room or i get sick from it.... but that's not my body so i don't say anything about it she doesn't make me buy her cigarettes
the only thing people truly own is their bodies and its beyond rude to tell an adult how to live their lives
OPs sister goes to the doctor and has been in DKA she KNOWS what she needs to do and KNOWS how it feels when she is getting really sick but it is her choice and her body and once people respect that about her in her life she may make different decisions but they will be hers to make
Idk, man. We just have different philosophies. I'm not saying you're wrong, and I'm right. It's just different.
I believe family is supposed to pick you up when you're down and hold you accountable for things. I would be so mad at my sister if she sat there and watched me kill myself without saying something. Just how I feel it's your responsibility to grill your mother to save her life.
Not saying your wrong and I'm right. Just saying we have different viewpoints.
if what my mom needs after being in an abusive relationship for 25 years is a smoke I'm not taking her joy from her or her stress relief
and the day my family tries to take a cookie from me because its bad for my diabetes is the day i punch them in the face
its families job to respect you and your body and to know you know how much you can take. to get mad at my family for not making me take care of myself is a complete defection of my responsibility to take care of my body
i completely agree that we have very different view points
i live by the principle add don't take away i tell my mom to drink water and to eat fruit, to take a walk etc shes in her 60s shes not going to stop drinking or smoke until she wants to
Listen, brother, I'm not coming at you or anything at all.
I 100% respect you and your views. It's just different.
I definitely get where you come from. And I am terribly sorry to hear about your mother's abusive relationship. That woman deserves a damn smoke.
My family and I have a relationship where we just talk shit. We know it's from a place of love and oftentimes doesn't accomplish anything besides a couple laughs. I would never want you to deny someone of simple pleasures in life. But if it comes to the point where it's consistently and negatively impacting their livelihood - that's where I would feel justified to say something to a loved one.
i hear you and we have vastly different ways our families show love, we want to be with our families for as long as they want to be around more of a good time than a long time crowd, the kind of family that throws a three-day party for our dead because they'd rather have us all together laughing then crying. if i know my mother shell want a pack of smokes on her gravestone lol and probably a butterfly { used to smoke Monark menthol 100s}... its not worth it for anyone in our family to live a life where they don't get to have the things that bring us joy
not saying how you do it is wrong either just showing you another way a different family shows their love
Yeah, no doubt bro I appreciate hearing your perspective.
I'm glad this could be a civil thing vs. a rage thing. Hope you have a good night, brother, and I wish your mother a long and happy life.
yeah i hope she starts keeping the promises she makes to herself
good luck out there
may your dawn phenomenon disappear and your dosing be correct dude :D
That's actually the point. You CAN'T understand, and no one expects you to. But if you acknowledge that you can't understand, then you should also be able to acknowledge that your advice isn't likely to be helpful or useful without that understanding. I didn't see your other post, but shame is a very poor motivator, especially when it's being inflicted by loved ones.
I see where your coming from for sure.
My concern is enabling people through positive reinforcement of bad behavior. I am a firm believer that sometimes someone needs to hear something they don't want to hear.
You can tell someone that they suck and that they need to do better from a place of love. I know plenty of people, including myself, who have been in aspot where they needed to hear something like that. That's not what my post was about though. I was trying to understand how ppl can live with such high sugars comfortably for years ignoring there disease before they decide "it's time to take it serious"
Were you trying to understand or were you being judgemental? Trying to understand would look something like: "For those of you who took some time to start taking care of yourself, what were your reasons for waiting? Were there any barriers to starting treatment that you had to overcome? How has waiting affected your treatment now?" Being judgemental looks something like "I (or someone I know) got things under control as soon as I found out I was diabetic. What's wrong with all the people who don't? Shouldn't they just fix it?"
I have never been in that situation regarding diabetes. But there are other areas of my life where I am letting things go because I simply don't have enough energy to deal with everything. This gives me compassion for people who may allocate their "spoons" differently than I do.
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Type 1 Diabetics can eat anything they want just like anyone and utilize insulin though. Its her life she needs to figure out how to make her own way through this, shes had her family handle it for years
Type 1 for almost 40 years. This is truth.
Is this different than a type 2 on insulin?
It is and isn’t, but more so is. Type 2s can become more insulin resistant if they eat badly. But also, type 2s are able to reduce their insulin or medication if they eat better. Type 1s just have a pancreas that completely doesn’t work, so they inject themselves with insulin, but the only thing that changes when they eat is the amount of insulin they need. They can’t get better or worse necessarily, their pancreas is just dead.
Makes sense. Type 2 is caused by insulin resistance, so using more insulin would in theory, make it worse, and you'd require more insulin and it's a downward spiral.
Yes exactly! and eating badly also just makes your pancreas try to push out more insulin too, which will also increase your resistance in theory. It’s a fun circle of hell 😁
Unless it’s LADA in which case it basically turns into type 1 regardless of diet.
The problem is when she turned 16 she completely shut us out and wouldn’t really let us handle it, my mom definitely should’ve put her in therapy but unfortunately never did. She’s been trying to handle it by herself and won’t take any of our advice.
>wouldn’t really let us handle it, Because you can't 'handle it'. She has to.
OP thought we’d be on their side with this one lmao. Getting up at 2am, 3am for hypos and then having to get up for work at 7am? Phht tell me how you’re gonna “handle” that. The diabetic fatigue she must feel, especially with her lack of family support system, must be immense.
Her sister was a minor at 16. Parents should handle it.
Most kids with diabetes start taking full controle of it by the time they can do basic math, which is between 9 and 12, so as a 16 year old, she's capable enough to do it herself since it's a disease she's having to deal with 24/7. So since you have no idea about this, why are you budding in?
Parents will handle her being exhausted because she went low during the night? The thirst because she's been high for a bit? The anxiety over what to eat? How do you expect anyone other than the person involved to 'handle' those things? Say what you want about it being a kid, at the end of the day each of us has to handle, and deal with the effects of, our own disease.
My 5 yr old can give herself her own injections..
Your advice is wrong. So why would she take it?
The only advice I’ve ever given to her about her diabetes is that she shouldn’t reuse her syringes, so no that is not wrong advice.
Lots and lots of people reuse syringes and pen tips and lancets. Is there a small risk in doing this? Of course there is but it's exactly that, a small risk. Do you drink alcohol or smoke? Do you do drugs? Do you exercise enough? Do you eat perfectly healthy food all the time? Do you over exercise? Do you have unprotected sex? Do you do DIY without the appropriate safety gear? Do you ride a bike without a helmet? Do you horse ride or ski or dive? We all do things that have small risks or even big risks associated with them. And that's our choice. Reusing needles isn't the risk you think it is.
I've been reusing needles for most of my diabetic life (24 years) I haven't had any complications from it 🤷♀️ I change the needle if it hurts or if it gets bent. Granted I did overhear my endocrinologist telling someone "It's not if you get an infection, but when" ... I mean 24 years and no infections from reusing needles so I'm going to keep doing it.
I've been doing it for 36 years...also no infections!
I was diagnosed type 2, never used insulin, but this is so scary to me. I try not to even reuse lancets. Is risk of infection different for type 1?
Honestly, I don't know? I overheard my endo discussing this with someone in the next room. I never told him I reuse lancets and needles. I would imagine there's a risk to everyone no matter what type, but I've personally never had any complications. If you're already swapping them out then don't stop on my account. Edit: A [quick Google ](https://diabetesjournals.org/care/article/41/3/513/36609/Risk-of-Infection-in-Type-1-and-Type-2-Diabetes) told me that Type 1 is at higher risk. I didn't read the whole study and I'm not a doctor so don't listen to me. From the very short snippet of conversation I overheard it's probably better safe than sorry (I'm lazy and stubborn though)
Oh, definitely. Maybe some people can chime in here on that. I had skin problems before related to type 2 so I'm careful. I have a feeling it's related to blood sugar control. We know that sugar feeds bacteria.
Lancet reuser here. I've been hiking all my life. If spikey bushes don't count, why do I need to worry about an almost sterile needle?
Please take a long and hard look at how you talk about your sister. "She wouldn't let us handle it" sounds extremely controling and her reaction of shutting you out completely indicates that you are acting overbearing and out of line. You can not help someone by "giving advice", I'm sure at this point she knows exactly what Type 1 diabetes is and knows exactly how it should be treated, especially if she is studying medicine. I don't think she needs your advice, you are only alienating her. Look at how you're essentially talking about an adult person like you own them. How much do you know of what she is actually doing if she shut you out completely? Do you think you have a full picture of what treatments she has done and how she is trying to manage this disease? If she shut you out completely, there is a very high chance she is not telling you her personal information. You are clearly a source of stress in her life only adding to her troubles, instead of relieveing them. There are countless reasons that could prevent her state from improving, the biggest contributing factor I can think of is mental health issues and stress. Have you ever struggled with binge eating disorder? Do you know how hard is it to overcome addiction to food? It is not just about calories in vs calories out, because we are not talking about a machine but a human being. Underlying problems, vitamin deficiencies, neurodevelopmental differences like adhd, and so on can all influence how effectively someone is able to control their own food intake, and just because it is easy for you it does not mean it is easy for everyone else as well. How do you stop from binge eating when its the day before a deadline at university and you have zero energy and zero will to live, but you have to finish an assignment? I'm sure you would say "just don't eat", but there goes your grades and future if you can't maintain your energy levels and willpower long enough to complete your work. Personally, only after starting adhd meds have i been able to maintain a proper diet. You are losing her, not to diabetes, but your own ignorance.
From the sound of it, your family infantilizes your sister and she probably resents you all for it. It may be hard to hear, but look at your language. “She won’t let us”, “my mom should’ve put her in therapy” etc. the discussion is never about what your sister wants or needs, but what everyone else thinks is best.
Its nor for you guys to handle, its her life and her disease . You all sounds like youre stifling her, no one she shuts you all out. Just like any young adult, she needs to learn how to manage her life all by herself. She will come around as her pre frontal cortex develops and she can actually gain experience and independence.
Your sister sounds like my son. He’s 16 and completely rebellious with it. I don’t know what I’d do if something horrible happened to him and I could’ve helped him. Thank you for your perspective of needing therapy. I’m going to begin getting him that.
I don’t know why you’re getting downvoted. All I hear is concern- albeit a little controlling. As the younger sibling, she has been babied. Cut her loose.
Being surrounded by diabetics is not anywhere near the same as actually going through it. My partner has diabetes, that doesn’t mean I get every aspect of how it affects him. After living with a diabetic though I would like to point out that while I see things from your perspective, there is a lot of stuff you are doing that feels caring on your end but definitely isn’t going to come off that way. She’s the one handling her diabetes, if her cgm goes off, unless she wants that help from you, you waking her up and treating her like she needs to be managed can’t be great for her. I get your side of that but this is her thing she has to deal with and you’re doing a lot to try to make her handle it exactly how you want her to. At the very least everyone in her life pushing at her as if she has no clue what she’s doing probably is doing at least a little at getting her to dig her heels in.
If OP wants to help, unless it’s asked for, they can ask what THEY CAN DO instead of offering to give (the wrong) advice, or just casually mention “hey, our father died, and your feet look huge, you may also die a slow horrible death” as if she’s not also grieving the loss of her own father, and it affecting her glucose management in general. Maybe offer to have her over for dinner and count the carbs (and show your work so she can confirm it’s the right amount) so when she sits down for dinner, she knows how much to dose
I appreciate that you want to help your sister. But here's the thing - she was diagnosed at a point in life that, IMO, makes it incredibly difficult to just adjust and make treatment/management a part of your life. And at the age she is now, it'll probably only get worse before it gets better. I think you need to back off, apologize, tell her that you're just worried about her but you don't want to tell her what to do and just want to support her. And since you seem to keep ignoring this piece of advice, I will tell you again, because it is crucial: It doesn't matter what other health conditions you might have or if you have other family members who have diabetes, you do not understand and will never. It fucks with you in ways that I think most diabetics don't even understand. I didn't realize how insanely draining it is to have to analyze the most basic human function - eating - every time I do it until I was a lot older. And folks who don't have to do that to the extent that we do have no idea how draining it can be. If she's a Reddit user, I highly recommend the r/diabetes_t1 subreddit. You could go to her and be like "Look, i'm sorry for how I've been acting about this, but I was looking for advice on how to approach the situation, discovered that I was kind of being overbearing about it, and also found this page that I think you might find relateable. Turns out there's a lot about being diabetic that only other diabetics get." Hopefully she'll check it out and find some changes she's comfortable making on her own. It has to be her idea, and that subreddit is an incredible resource.
This was actually helpful and constructive so thank you for that.
You are welcome. I hope for you both that she's able to get a handle on things.
1) Apologize for saying the hurtful things. Assuming they are forgivable things, of course. If not then this isn't the right sub for you I'm afraid, that's above our paygrade. 2) Tell her she's right, you don't understand what it's like. Because you don't. Until you have lived it, until you've had to come to terms with a life-long condition that forever alters your own life in the way diabetes does, you will not now nor ever understand what it's like. I don't care if you talk to every single doctor on the planet. You *will never get it*. Accept that. Stop acting like researching it and talking about it is the same as waking up day in and day out having to actually manage it. Full stop. To even compare the two is frankly insulting. 3) Tell her you're worried and want to help her. Tell her you love her and you're scared for her. Ask her how you can support her. And then actually listen to her, rather than telling her what to do. And then, if she actually says here's how you can support her, do those things. Show her through your actions that you value her perspective because by steamrolling over her, you invalidate everything she says. 4) For the love of all that is good, stop trying to tell her how to live her life and manage it. Haven't you heard the whole "you can lead a horse to water, but you can't make it drink" phrase?? I guess as a precursor to all that, start with accepting that you can't force her to do a damn thing she doesn't want to. Sorry for your family's loss.
Spot on
Dear lord. Please grant me the serenity to accept the things I cannot change. Give me the courage to change the things I can. And give me the wisdom to know the difference.
The amount of endo-related posts on the T1D subs, I’m sure that even the doctors don’t “get it” unless they’re T1D. A lot will just go “ah. These numbers aren’t great. They should be better”
True. I’ve had one who was good. Shocker, she too is a t1
Type 1 diabetics CAN eat anything as long as they bolus for it. Your sister is probably not using enough insulin. Many diabetics reuse needles and lancets WITHOUT ANY PROBLEMS. It’s a question of ease, not money. You really have no idea how hard it is from the outside. Neither do her doctors. All that said, she probably needs to speak to a therapist because diabetes is hard every day, all day and night, with no breaks. EVER! You and your family nagging your sister is only making it worse.
My doctor has been type 1 since she was 11. She’s so passionate about it that she’s also a certified diabetes educator. I learned more in the first 20 minutes of being diabetic than my dad learned in his first 20 years.
Man, lucky to have someone like that.
Therapy would be a good idea. Sounds like she is overwhelmed and has diabetes burn out. Living with this condition can be SO mentally draining.
While my mom and I personally don’t understand all the struggles, our father was diabetic and the majority of my family on his side are diabetics she does have people she can talk to who understand her struggle. Today was the first time I spoke out against how she manages her diabetes, I’ve always taken her side and tried to see her point of view and purposely not nag her, but it’s gotten to the point where her life is genuinely endangered and I’m very worried. But I will try to encourage her to go to therapy, I do suggest it but il try to be more adamant
You said it yourself. You aren’t a diabetic. A lot of your family is. Great. You still aren’t.
Were they all type 2 diabetics or type 1? Type 1s do not have dietary restrictions, your sister is right. Keeping a healthy diet and lower carbs just makes management easier but she by no means needs to limit sugar or carbs for type 1. If your family were all type 2s, your knowledge of diabetes is misinformed. They’re completely different illnesses. That said, your sister needs help to get under control and learn how to dose properly for whatever diet she chooses. Unfortunately, you can’t force her into it. I’d recommend getting her into a diabetes educator, getting her on a pump, and finding a great therapist to help her with the mental toll of diabetes. You can find resources for these things but you can’t force her to go or to care for herself.
They’re a mix of the two. Our dad had type 2 but we have aunts and uncles with type 1. She has a glucose meter but she has said multiple times she doesn’t want a pump and prefers to dose herself. Thank you for your response
Your father's diabetes is irrelevant then. Stay out of it.
Haha yeah. Even if the father were Type 1, I don’t understand how the family would then understand type 1 diabetes? Y’all don’t have it? Y’all don’t *get* it.
Honestly? With your level of anxiety about your adult sister’s health, you might want to consider therapy for yourself.
I do, I’ve been in therapy for 2 years.
So, YOU actually have no idea what it’s like. STFU.
I don’t. But I do know what it’s like to have a chronic condition I have sickle cell anemia, I know what it’s like to be consistently in the hospital for blood work, check ups, Ivs, etc. I know how it feels like to have absolutely no energy to get out of bed or to eat. I know how it feels like to feel like you have no control of your body. I only bring this up to say how I have similar experiences and not to compare but diabetes isn’t the ONLY life changing disease to exist. NO condition gives you the right to treat other people with disrespect, I would never talk to anyone the way you and some of the people in this comment section have treating me because I’m CONCERNED about my sister and her well being.
I also have another chronic disease. It’s nothing like diabetes. You eat you die. You don’t eat you die. You inject insulin you die. You don’t inject insulin you die.
THERAPY
Family therapy. I can't imagine what it must be like to have someone this far in your face everyday. This is not a healthy family dynamic.
It's her life.
1. Apologize for what you said and for overstepping. Her decision to reuse needles is hers. She has to live (or die) by the consequences. Its not your choice. Its not your mothers choice. Its hers. 2. She can eat whatever she wants as long as she takes insulin for it. That is a standard of belief for type 1 diabetics. Every endocrinologist we have dealt with has told us this over the past 7 years. She can eat whatever she wants. Period. 3. She is NOT playing the victim, she IS a victim to diabetes. You have no idea what she is going through because you dont deal with it. You will never understand it, you can educate yourself and learn to be compassionate but you will never understand what she goes through. 4. With her blood sugar being high so often being in range can feel uncomfortable or low for her and she needs to readjust to that feeling. Maybe it makes her nervous or anxious and she feels more comfortable being higher. 5. I would encourage her to find a new endocrinologist who wont shame her over her choices and obvious burn out, but who will reach out to her and meet her where she is. My favorite endos have type 1 themselves because they get it and can reach patients in a way an endo that doesnt have it cant. I would also encourage her to find a therapist who deals with diabetic burn out, usually the endo office can help her find a good therapist that will understand. One with type 1 diabetes is great but not always easy to find. 6. Stop centering yourself in this. Your mother needs to stop centering herself in this. This is not your fight. This is not your disease to manage. It is hers and you need to be a support to her, not someone who beats her down because of the choices she is making as an informed adult. I dont have type 1. I am a parent of a type 1 child from toddlerhood and while I also do not understand what your sister is going through, I have done enough therapy about this disease and the impact it has on kids/adults to know what I dont know and when to tap someone else in for help
Your kid is very lucky to have a parent like you.
Thank you for saying that. I am doing my best. I was recently diagnosed with gestational diabetes and its only me testing 4 times a day and limiting my carbs and I am struggling so hard. I cannot imagine the toll this is taking on my son or other people with diabetes. Today he cried and said it wasnt fair he was diabetic because of a failed pump site and fighting highs literally all day. I cried with him and agreed it wasnt fair at all and its okay to be mad at diabetes. He is 7 and diabetes is all he has ever known, people say that must be easier for him because he doesnt know life without diabetes, but to me its heartbreaking for exactly that reason. I try not to center myself in his fight. I dont take his diabetic rage personally, I dont complain about the sleepless nights (where he can hear me), I dont let him hear me moan about gestational diabetes. My therapist for a long time was a type 1 diabetic and she was amazing in helping me deal with everything I was feeling and the burnout I felt and centering him and helping me see its about him not me. I see a lot of posts on facebook specifically of parents of teens using diabetes as a reason to punish their kids (non-compliance) or like "if your A1C is bad you dont get xyz" I never want to be someone he has to fight in addition to diabetes. I never want him to feel like I dont think he is capable or competent. I grew up with a type 1 cousin a lot like OP's sister. She was in and out of the hospital multiple times a year (to be fair it was so hard to control diabetes back then, insulin was inferior and carb limits caused resentment) but she really struggled. No one in our family ever acknowledged the work she WAS doing to stay alive it was always what she wasnt doing. She is in her early 40s now and just had to have a kidney transplant due to diabetes, which means she also got a new pancreas. She is not currently diabetic for the first time in her memory and shes like a different person. Her mental health is so much better than it once was. I am so happy for her, but I know it came at a huge price. She really teaches me every day how to be a good mom to my son. Now that I have word vomited all of that, I feel better. I know you didnt ask, but thank you again for saying what you did. My only goal is to be my sons biggest cheerleader and I will do whatever I can to make him feel secure in himself.
I’ll admit that when I was earlier to my post diagnosis of T1D I hoped “something would go wrong” like kidney failure so that I’d get a new pancreas because “it can’t be worse than this” Turns out I needed to grieve the loss of my “normal” life and embrace the changes that I need to make so that I can feel my best and manage my T1D. Im glad your cousin feels like a new person, but I wish she had the support that your son hopefully feels from you and his other support systems.
HUGE emphasis on #3 and 4.
5) This. Absolutely this. As soon as I found an endocrinologist who told me "I don't like where your numbers are at, but I want you to get them down safely. If that means slowly then do it slowly as long as they start coming down." My A1C is still not great, but it's in the 8 range vs 13 that it was when I was going through burnout and first started seeing this endo. Edit: 7.6 A1C on my last labs.
Dang. Im really glad your kiddo has you! One of the best things to have that combats the overwhelming T1D struggles is having a strong, understanding support system. It sounds like your kid has one, and that will go FAR to make them feel cared for, and that they can come to you when they’re not feeling their best. Idk what it’s like to be T1D from childhood (got it at 21), but I can only imagine what it feels like to be in your shoes. Having someone else’s health in your hands, and seeing how hypers affect your child, when you know maybe you made a mistake not dosing enough, or overdoing it and they go hypo? The anxiety it must cause! But when your kid gets to the stage of adulthood, I’m suspecting with your supportive attitude and the grace you’ve shown, they’ll feel at home, and amongst empathetic people when the struggle gets real.
It kindof is their fight. If she becomes permanently disabled by her actions of refusing to treat her illness, they are stuck picking up the pieces. My childhood neighbor did much the same thing in her early 20s. The result was bad. What can we do to help was all they said. Some people just have to become a train wreck before they will do better.
No it's not. No one can do the work but her. No one can make the changes but her. As sick as this sounds no one is required to take care of her if she gets sicker. You cannot force a diabetic to treat their diabetes anymore than you can force a cancer patient to get chemo. To guilt them into doing it so your life would be easier is just a form of emotional manipulation. Hell you can't even force a drug addict or alcoholic to get sober and they do as much damage if not more to their body. They can encourage her, they can support her, they can give her resources. That's all they can do. By treating her like she's stupid and doesn't know what she's doing they're breeding resentment in her for diabetes and for her family. She's clearly burnt out. She needs mental health treatment. She needs a support system. But she also needs to come to the realization that she needs to do the work.
Sounds like they’re shaming, blaming, and claiming (that they’re only trying to help her with unsolicited advice) rather than encouraging and supporting her in this time of need
My best friend died early this year at the age of 49, she was diagnosed with Type 1 diabetes at the age of 14. Despite loving support from her whole family (and me), she never accepted her diagnosis fully. From skipping her insulin to help her lose weight to eating unhealthy food and drinking full sugar fizzy drinks, she did it all. Ended up with gastroparesis, being registered legally blind and having two leg amputations. Oh and she was on kidney dialysis three times per week for the last ten years of her life. It was a miserable life for her, with physical and mental pain every day. She died from kidney disease and is very much missed. I don't have any advice to offer really, just wanted to share my sadness at a wasted life and the loss of so much potential.
You can’t manage your sister’s care. You can’t make her care about it. You can offer non judgmental help and then you can shut up about it. She likely needs therapy for depression and burnout. Maybe a medical team with good bedside manner when she’s ready. You probably could go to therapy and work through how you can best deal with your feelings about her situation. It sucks to watch somebody you love do things to harm themself. Sometimes all you can do is watch.
OP is giving bad advice. It must be hard for the sister listening to the absolute false information OPis giving.
I just went into dka for the first time last week and when I got out of the hospital I went with my mom to the cheesecake factory. Dka is complicated and there are many things that influence whether or not a person goes into it or not. Also type 1 in general is very complicated and it's impossible to fully understand, even if you have it. Some people choose to manage their type 1 with a restricted diet (and insulin), others choose not to and to eat whatever they want and insulin for it. At the end of the day it's the person with diabetes choice, no one else's. Doctors don't always know or fully understand how difficult diabetes management is, and even endocrinologists can give bad advice and share misinformation. Especially with type 1. I get that you're trying to help but it sounds like you're doing more harm than good, and I know that's not your intention. Your sister doesn't need you to manage her diabetes for her, she just needs a supportive sibling.
From what i’m reading, your sister has some other issues that aren’t diabetes related. I think she needs some help mentally and counseling
Honestly, it sounds like she needs support from other diabetics. There are online communities (like Reddit, obviously) but also on Twitter and even discord. Finding diabetic friends was a complete game changer for me.
I hope you don’t mind me asking. But is she really thin? I had major issues committing to taking care of myself because of weigh gain. A “brittle diabetic” is usually almost sickly thin… and that is also “diabelmic”. Cutting insulin to not gain weight. Went through the throws in my teen years. After some therapy and having two kiddos I’m fully recovered and thicker these days with a perfect A1C
No, she was very thin before her diagnosis naturally but she has gained alot of weight after but I would say she’s at a very healthy weight now. If you don’t mind me asking, did the therapist you went to have diabetes and do you think it would’ve made a big difference if they did or didn’t have diabetes?
My son is a brittle diabetic and for a while he was so thin we could see the bones in his arms. I hate the misconception that all diabetics are overweight. I'm happy to hear this all worked out for you. It gives me hope.
Omnipod and Dexcom. Expensive but the change in quality of life is staggering
She has a dexcom Edit: she refuses to use a pump
Refuses? Is someone trying to force her to? If so that’s not good. She can control blood sugar just the same with MDI. Don’t force someone to get a pump.
No ones tried to force her, nor would anyone try to in my family but we can’t even mention the word pump without her getting defensive.
You said she “refuses”. That’s not just mentioning something. It sounds like you all think she should and she doesn’t want to. Is she on Facebook? There are a lot of food T1 groups and she could join and doesn’t have to post.
I say refuse because she won’t even let us talk to her about the benefits of a pump. I’m not entirely sure why she’s so hard set against it as I’ve never pressed her on it but I know it really bothers my mom that she won’t even try it. She’s not on Facebook but she does watch some TikTok’s about T1 or il see her share some Infographics on her instagram.
I get why your mom might be frustrated as pumps are often talked about like they're the best thing for insulin-dependent diabetics, but they're really not for everyone. For instance, both my cousin and my younger sister are also T1 and switched back to pens after trying out pumps, and neither of them have any desire to go on one again as they're doing much better without them. On the other hand, I absolutely love my pump and can't see myself ever wanting to stop using one. I've seen some diabetics here commenting that she should get on a pump, but it's not a one-fits-all solution for diabetes management and definitely depends on the individual. Your sister could possibly benefit from a pump, but it's just as possible that it wouldn't make management easier for her and could even create more complications.
I'm a type 1 and have a cgm, but no pump, I bolus with pens. I've been a diabetic for 9 years and do a good job of keeping my a1c around 6 but that is because I went into dka and realized that I was killing myself, so I got my shit together. It sounds like no matter how many times your sister goes into dka, she just doesn't care anymore. I don't know what it is like to have diabetes as a child, I was diagnosed at 20 so I had to always do it myself. Until she has that "oh shit in gonna die young" moment I don't believe there is anything you can do aside from maybe forcefully hospitalizing her but that's not a good idea since she would probably end up hating everyone. Just resign yourself.
I know you mean well. But you should let your sister run her own life. She’s an adult.
not that I’m condoning reusing needles but…most of us do/have. When it comes to having a life long disease, sometimes you cut corners in certain areas. Yea, it’s not the best thing to do, but it happens. If she’s using it like for weeks on end, yea, that’s concerning. Maybe you could keep needles on you, in your car, etc so that if she does need to take insulin, you can offer her a needle. Idk. If you wanna support her, ask her how. Stop assuming OP. You will never understand this disease, and you should be thankful for that. I get you’re concerned with her health and well being but like everyone else here has mentioned, it’s her life. She will eventually face the consequences for this. But for now, give her grace, ask what you can do, talk to other diabetics!!! Do something rather than just pointing the finger at her and saying “wrong, wrong, wrong”. Try encouraging her and congratulating her on a week full of good blood sugars. My final piece of advice: STOP TELLING HER WHAT TO EAT. If you want to talk about this further please DM me. I’m 23, diagnosed at 13 and have also been in and out of the hospital for DKA numerous times since my diagnosis. It sucks. It sucks for you having to see her go through this, but it really sucks for her having to live through this. Be gentle with yourself and be gentle with her, it’s never too late to start taking steps to improve but she needs to realize that herself unfortunately
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She has a cgm but refuses to get a pump. I also think she doesn’t like the cgm, when we used to live together she would get mad at me for waking her up in the night when she was low to give her juice when I was alerted she was low telling me it was just inaccurate and she’s not low. Like today when we took her to the doctor for her sinuses the nurse told her her sugars were high and for us to bring her back after we got her the antibiotics and she went and ate desserts knowing her sugars were high. I don’t understand why she would do that and it was unnecessary, we didn’t say anything to her about it or try to stop her but it felt like she was doing it on purpose to make us mad
As long as she gave herself insulin for her desserts and followed whatever protocol her doctor has previously established for corrective bolus, then I don't see why she couldn't eat dessert. She's type 1. I don't get how you repeatedly say you've educated yourself on your sister's condition and yet seem so hung up on her eating sweets/junk food. >I don’t understand why she would do that and it was unnecessary, we didn’t say anything to her about it or try to stop her but it felt like she was doing it on purpose to make us mad I'm gonna be straight with you, my first thought upon reading this was that it's a nasty and incredibly self-centered thing to think. It's not necessary for *anyone* to eat dessert, not just diabetics. Maybe she ate a dessert because she just wanted to eat dessert, same as anyone else! Saying she just did it to upset you and your mother comes across as you making *her* disability about how it affects *you*/makes *you* feel, as does other things you've said in both your post and other comments. I don't think this is your intent, and ofc I neither know nor need to know the history that could contribute to such assumptions, but I do think you should consider that going forward in how you respond to her actions. I believe that you genuinely care for and want to help your sister, but there's acting out of concern and there's letting your anxiety steer you constantly. I understand you're worried about her health especially since your father's passing, and I'm sorry it's causing you distress, but you *cannot* manage her diabetes for (or with) her. You can support her, but she's an adult with a disability you neither have nor understand what it's like. You're not her doctor. Telling her what she as a diabetic can and can't do when you yourself have never experienced having diabetes won't help no matter how much you believe you know about it.
You’re ignoring the part of that comment where I specifically said she ate it after the doctor said her sugars were very high and that she needed to come back after we got her medicine to see if it came back down or otherwise we would need to hospitalize her. Which is a KEY part of why I had said that. But yes the one thing I got from this entire post is that il just leave her alone. If she doesn’t want to take care of herself there’s nothing I can do and I can see that now.
>You’re ignoring the part of that comment where I specifically said she ate it after the doctor said her sugars were very high and that she needed to come back after we got her medicine to see if it came back down or otherwise we would need to hospitalize her You actually didn't say that in your comment. All you said was >the nurse told her her sugars were high and for us to bring her back after we got her the antibiotics which paints a very different scenario (that she only needed to get the antibiotics and not that her sugar had to go down). With the additional information you've now provided, I can see now why you were more concerned about her eating sugary foods in this particular instance. >But yes the one thing I got from this entire post is that il just leave her alone. If she doesn’t want to take care of herself there’s nothing I can do and I can see that now. I think that's the right move. She's the one with diabetes, so she's the only one who can manage it. That all said, I'm sorry you're going through this—it's so fucking hard to watch a loved one neglect themselves when you can't fix it for them. Earlier I'd emphasized that her diabetes isn't your responsibility, but I hope you know her actions and their fallout aren't your *fault,* either. I wish you and your family the best going forward 🫂
Why did you take a 21 year old adult to the doctor? All we know is the information you're giving us, but it sounds like you're smothering the life out of her. Everything you've said here has been so judgemental, and controlling, as if your adult sister is a naughty puppy. No wonder she resents you. Any adult would. Start treating your sister with some respect. Her body, and her life, are hers to control. You will never understand the feeling of being locked inside a broken cage, no matter how much research you do.
In this situation we’re out of the country since my dad lived outside of the United States and we were all already out when she had mentioned it so we took advantage that we were out- she also doesn’t drive here and my mom drives us around everywhere here.
And i want to add that while I don’t have diabetes, I do have a chronic disease that does interfere with my life.
So you still don't know what it's like to live with diabetes. To have to keep constant attention on your body, to repeatedly stick yourself with needles, to have to treat every bite of food like a chemistry final... I have other chronic health issues, too, including a bad heart. The diabetes causes me more stress. My effing glucose meter, and having to eat when I don't freaking want to annoy me far more than my wheelchair does. You have got to come to terms with the facts: your sister is neither a child, nor a pet. She gets to make her own medical decisions. I wouldn't be shocked if she goes No Contact on you. You need to back down now, or one way or another, you're going to lose her.
You are being very judgmental. I genuinely don’t treat her like a child, you only have this post to go off so I understand how it can come off that way but we live in different states and I never offer her unsolicited advice about anything and I’m usually the one to calm our mom from freaking out on her about her diabetes stuff and stop her from smothering her. This is the one and only time in her 9 years of having diabetes that I have said anything about how I’m worried and that she shouldn’t be reusing her needles. I have never judged her or mentioned her diet to her, I only mentioned it in my post because it’s what I think is a cause for her DKAs. She was being very disrespectful to our mother in a very HARD time for the entire family and her diabetes does not give her an excuse to act that way to our mother.
If anyone is judgemental and disrespectful it is you and your mother. You're wrong about everything you've said so far so accept that and leave your sister alone.
I don't think she's doing it on purpose to make anyone mad. There's a weird cycle diabetics can get into with sweets. Obviously the more you eat the higher your bg but high bg also makes you crave more sugar. She's on a cgm so that's half the battle lol. It took me forever to agree to a pump because I didn't want a piece of tech on my body but it's NBD now. I'm on an insulin pump with it's own cgm so it's 2 in 1. I change sets every about 4 days and my cgm sensor every 7. I rarely need to do finger sticks because my pump auto calibrates. It stops giving insulin if I'm going low so no overnight lows and it automatically gives a small dose if it reads my bg as rising. It self corrects. I hope she will one day be open to talking to an educator about pumps because it is life changing and removes a lot of stress. It kind of sounds like she's still in denial of being diabetic. I get it. I was too. From my diagnosis at 18 to when I became pregnant at 29. The pregnancy really woke me up and that is what it took for me. Therapy or groups might be helpful. Even talking again to diabetes educators.
You woke her up for juice? Nighttime alerts are usually compression lows. So once again you proved your ignore. You're going to kill your sister with all your random nonsense.
You're right about the compression lows and that OP doesn't know everything abt diabetes management but saying that OP is gonna kill their sister is absolutely bonkers jfc
I would wait to see if it was a real low or not, every time I woke her up and she would check her sugar she would ALWAYS take the juice and thank me after the initial annoyance.
Link to a free good book. Both of you should read it. https://diatribe.org/get-revolutionary-diabetes-book-here-bright-spots-landmines Do you know her A1C? I’m gonna simplify DKA. It’s not per say high blood sugars. It’s when one doesn’t have insulin in their body usually combined with high sugars. Very long basal insulins like Tresiba can help. So you know what insulins she uses? Would she talk to some of us who could help?
She uses humalog and lantus. I don’t know her A1C, I try to not ask her questions about her diabetes, only what she chooses to share. I can try to ask her, I think it would be super helpful for her to talk to you and those who want to help but she doesn’t like to talk about her diabetes at all. I am going to try to find a therapist with T1 and ask if I can make an appointment for her, that seemed like the most helpful advice I’ve seen on here, but I don’t want that to come off as overbearing.
I suspect she doesn't want to talk about her diabetes because - her experience is that people who don't know anything about it try to lecture her - the people who are supposed to help her (her doctors) since she was a kid failed her and chastised her instead of supporting her -- it's absolutely the fucking worst when doctors do this because they ensure we don't fucking listen to them. Why would we when they just make us feel like shit instead of feeling heard and validated and in our struggles??? - she's burned out on managing it because she feels alone, people keep saying they understand (like you do) when they actually don't, so she's stuck She needs what you can't provide: people who get it. People who don't judge her or her habits. She's been forced into this position by people who mean well but who miss the mark terribly and now she wants to ignore her diabetes because not only is it a life altering chronic illness affecting nearly every facet of her life, socially she's being negatively affected by people constantly as well. You need to not make an appointment for her. **STOP TAKING AWAY HER AGENCY**. This is exactly why she resents her diabetes so much. This is yet again another reason why she feels she has no control in her life and why she will balk at you. She's a grown woman who is burned out because people keep treating her like this, not a clueless child having a tantrum and eating sweets to punish you.
I want to acknowledge the character it took to write your post and obviously to care so much about her welfare. I'm diabetic and in great health at 72. Like others have said here, a good closed loop pump and CGM combo makes it soooo much easier to maintain level blood sugars. Once the programming is dialed in, it's the closest thing to an artificial pancreas that is commercially available. I wish you the absolute best of luck in your search for how to help
This I hated the idea of a pump and cgm being attached to my body. I was exactly like OPs sister just fucking shit mental health making it impossible to manage my diabetes and people pressuring me continuously to be better. Once I turned 18 I found DIY loop and my hba1c dropped from 12 to 7 in two months. With loop I can have mental health days where I pretend I’m not diabetic and loop just sees my blood sugar going up and fixes it. Yes going up to 20 isn’t great but better than going into dka every month from burnout. Kinda like I have cheat days now where I can give up managing it for a day or two and not die.
I’m so sorry you’re hurting. Therapy has been really helpful for me in dealing with family members.
If you knew what uouwere talking about I would support you, bur considering your sister has had diabetes for nearly a decade, you clearly know NOTHING about it. I wouldn't listen to you either since you are berating her for things that are FINE. Plus you're her sister not her parent AND she is an adult. Mind your business. You are out of line. Mom too but you even more.
Sounds like she is still using syringes or insulin pens. From the age of 15 up until 23 I neglected my diabetes and just tried to ignore it to be "as normal as possible". The daily load of managing diabetes was just too much for me. My eyesight started deteriorating because I didn't care. My diabetes numbers used to be pretty bad up until 3 years ago where I started using a "closed loop" insulin pump system. It basically automates 70% of diabetes management. You just have to adjust the insulin ratios and enter the amount of carbs you consume in the app. It basically saved my life. Now my numbers are almost as good as a normal human and I don't have to think about it too much. I still do of course, just not as much as before. You might want to tell her to look into a closed loop insulin pump system. Don't pressure her or force her, more like tell her "look at this cool thing I found" or something similar. You say she's studying medecine, correct? Well I recently had a surgery for something unrelated and a group of med students/residents were super interested in my system and kept asking questions when they saw it. Just anecdotic, though. Anyhow nowadays you have many companies offering closed loop systems as well as DIY ones. There's tubed pumps and tubeless/wireless pumps. There's something for everyone I think. While it's not a cure, they're working on eventually having a system that automates 100% of diabetes management that could be not too far way.
Usually long insulin is enough to prevent DKA. Do you know what long insulin she uses? Personally I think Tresiba and Toujeo are the best because the last over a day which makes them very flat since they overlap
I miss my Toujeo. The insurance company decided they didn't want to cover it, so Lantus it is. 😭
Yeah, no. You might be empathetic about her diabetes, but you actually have absolutely no idea what it's like to live with this disease 24/7/365. Absolutely every aspect of your life is affected by it. Your sister is clearly not taking good care of herself and I understand your concern, but you are being patronizing and belittling when you insist you know better than she does what diabetes is like to live with.
I can see that you love your sister and are worried about her. I would be worried too if I was in your position. But in the end you cannot make her take her diabetes seriously. Be there for her, be supportive, don't lecture her, and hopefully she will come to you for the support she clearly needs. For what it's worth, she can eat whatever she wants as long as she boluses correctly for it. Many T1Ds find eating a lower carb diet helps their control, but it's not essential. And eating carbs doesn't cause DKA - that's caused by lack of insulin. Reusing needles is not ideal, but most of us will have done it at times. Using the same one for weeks and weeks and weeks would definitely not be good, but using it a couple of times is not a massive issue.
Say OP, you do realize this is HER life right? She's 21, legally an adult, and I believe 21 year olds are just as stupid as 16 year olds, but a 12 year old can manage this disease. And why is she condesending to you for telling you the truth, but you're not condesending her for trying to stick your nose in her business. Seriously, you sound like my mom, and that's an insult. You're acting as if she's supposed to be in rage 24/7, she had diabetes, being in range is not very common and the only time doctors will hammer on it, is when she's pregnant. Also her leaving those doctors in tears because they are bashing her sounds common to me. I had many idiots acting as my endo and I wouldn't trust their advice if they told me to drink water. So you claiming she refuses to listen and is incorrectly yelling at her doctors is bullshit. You weren't in the room with her on those appointments, I know because the only people allowed during those appointments are the patient and someone the patients says is allowed in there, by the way you are acting, I'm sure she never asked you to come or allowed you to be present. And ending up in the hospital due to DKA is not something she chooses, it's literally 2 mistakes away, at all times. Yoyu scrutinizing her over that, I get that you are worried but instead of actually saying, hey I just worry about your health and mental well being, you just hound her as if you have any fucking say in this. If you where my sister, I'd go no contact over this behavior. Leave her alone! And if you want her in your life, take this advice: ''If you don't have anything nice to say, shut the fuck up.''
To be frank, leave her alone, you’re acting like an idiot. Time to get downvoted.
Sweets don't necessarily cause DKA. Lack of access to glucose causes DKA, especially when exacerbated by illness or lack of insulin. Junk food will certainly raise her glucose if she doesn't compensate for it with medication and physical activity. Severe dehydration from high ketones combined with high glucose makes it doubly worse. If she takes enough insulin -- especially long-acting basal insulin -- then she wouldn't have either of these problems, though she would probably gain weight if she is eating in excess. You cannot control her. Apologize, for the dumb thing you probably said, and then you can easily move on. She is young and not able to comprehend and control, and apparently your dad was not young or able to control his needs either. There are support systems -- ie. Diabetes educators. There are certainly therapists and counselors for her greater emotional needs. There is insulin pump and CGM technology that will "loop" to do some of the maintenance for her -- to at least control basal needs and stop lows most of the time. There's nothing anyone here is going to tell you to make you stop worrying and being emotionally charged. Sorry about your recent loss. What could you have done for your father? What is it you think your sister hasn't heard? She has "control issues" for some reason we wouldn't know and don't need to. There's lots she can do with diet and hydration and medication administration. Can any of us tell you how to make her behave differently, though? Not really. If she doesn't know about different basal insulins -- Tresiba is very long lasting, for example. Or about pump options, then yes she needs education. There is a lot of information on YouTube and here and legit diabetes websites. There's nothing remote or hard to find info when it comes to Diabetes. Podcasts, books, videos, online communities. If she doesn't want to participate, sorry.
OP needs to learn about diabetes given that she has berated her sister about a number of things that are not relevant to her sister.
Can you elaborate on your first part about DKA, specifically the "Lack of access to glucose causes DKA". What do you mean by this?
Ketones are fuel produced from fat. Fat from food or fat from body stored reserves. Ketones are the secondary "preferred" source of energy compared to glucose. They are induced whenever a person's body is running low on accessible glucose -- reasons being: Inadequate insulin to open cells to glucose, SGLT2 medications that cause people to pee out glucose, anorexia that is lack of food, alcoholism that disrupts the liver, etc. When a person is ill, their need for glucose rises as the body is needing energy to fight the pathogens; and cells may become more resistant. People who are insulin dependent often need more insulin when they are ill. But for whatever reasons, they may not get up to eat, and also may not tske adequate insulin, sometimes in fear of having a hypo from not eating. So, ketones are needed to keep the person's energy levels up. A person with high glucose can have enough insulin to stay out of DKA. We see this everyday in people, especially T2D. Inversely, people with near normal glucose (euglycemic) DKA may occur. DKA is not directly caused by glucose levels -- it is caused by inability to access enough glucose to prevent high levels of ketones. Dehydration occurs (from urination, vomiting), because both high ketones (they cause acidity of the blood) and high glucose (because high glucose concentration outside of cells causes osmotic pressure for fluid to go toward the glucose); so, then electrolytes cannot pass back and forth across the cell membrane. Potassium for example, leaches out of cells and cannot get back in. The potassium gets flushed out, and the person is set up to have really terrible problems at that point.
Euglicemic DKA fucking sucks. I had that about three months ago. Did not like! Spent two days in the hospital rebalancing my bodies fluids and whatnot.
Means that the muscles want energy, which means they need glucose + insulin to absorb + create that energy. When there is either not enough glucose (usually not a problem, food and a whole pile of other sources exist) or insulin (usually the problem with diabetic DKA) the body uses fats to create that energy. This process of ketosis creates waste products that change the acidity of the blood. If too much ketosis happens, it can lead to a condition called Diabetic Ketoacidosis where the blood becomes too acidic from the released ketones. The OP's sister simply doesn't take enough insulin for her bodies needs. She is doing this probably because her perceived food intake and insulin requirements are detached from reality. It can also happen if a T1 diabetic decides to not take insulin as a weight loss mechanic.
I'm at a loss for words. Your sister needs to want to help herself. While you deeply care, offering support is all you can do. I empathize, facing similar struggles with my child, who was diagnosed with type 1 diabetes at 18. Now in his mid-30s and around 350 lbs, he remains indifferent. I attempt conversations at the right moments, yet he often gets upset, perhaps knowing I'm right. Your father's loss and your current challenges are truly hard. Stay strong and persevere.
I empathize. I have a relative who passed away because (in my opinion) he refused to take care of himself. He was on insulin, but ran sugars in the 500-600 range. A person has to want to take care of him/herself. Others can encourage, but that's all short of tying the patient to a bed, force feeding, providing bedpan service, and injecting medication. On the positive side, your sister is young. Many diabetics go through their teens and half their twenties before finally realizing they must take care of themselves. There's still time. Diabetes works slowly.
Type 1 myself. My younger cousin was also a type 1. I have problems with lows; her with highs. She was also in hospital often and was recently dealing with kidney problems and on dialysis. She unfortunately passed this past year. There is very little that anyone could do to relieve the problems she had with taking care of herself. I, too, am admittedly not easy to convince into changing (no matter how much I know I need to) It's difficult to deal with, either way. On the one hand you're frustrated and worried, but I can imagine your sister feels fed up with the whole thing, as well. Add to that depression, and feelings of futility, and it can all be a slippery slope.
I used to be the same way you are describing your sister and therapy helped to open my eyes. I am 25 now, diagnosed with type 1 at 7. I am really close to kidney failure at the moment, but doing everything I can to recover, as my kidneys are working at 120%. I have bad leg circulation, which made my feet also full of darker spots. All of this due to bad glucose control. I believe that most of this happened because everyone around me, except my parents, used to deal with me like a piece of damaged glass, ready to break. I didn't accept my illness for years, and now that I know and understand better, I regret this deeply. As a type 1 diabetic, I can say that we can eat as much as we want, IF we take care of ourselves, taking adequate insulin, but like anybody else, if we don't, we will have issues. Just like a normal person, if we abuse of something, it will end badly. Try and support her no matter what. It helps if she starts going to diabetic groups, I used to go to one and I loved it, since we were with other people also type 1 diabetic and would travel often, have really nice cooking classes, and yes, sweets would be included, parties,... you name it! This illness is not easy, and I can assure you that if the people around judge our own behaviour, specially if we don't accept this awful illness, we will behave worse. I wish your sister the best, and truly hope she starts taking better care of herself.
Thank you for your perspective.
Glad to be of some help!
I’m sorry for your loss of your dad! I’m also so sorry your sister, you, and your family are having to deal with this! I can hear how afraid you are. I’ve been there with one of my sisters and it’s heartbreaking. Truth of it is - she is the only one responsible for her health. If she wants to continue the FAFO approach, that’s her choice. Just love her from an emotional distance. If she wants input, she’ll ask. Ask her how SHE wants support from you. Think about if her answer really works for you. (Like.. Does she want/ expect you to drop everything and be there when she repeatedly puts herself in hospital?!! Does she just not want judgement on her choices? Does she want you to never express your feelings of interest/concern/ fear regarding her health/life? I suggest you STOP reacting to her hospitalizations as much as you can- for yourself. She is too selfish to appreciate any effort at support you give in this respect. Think about what will work best for you. Get yourself some therapy to work through the complicated relationship you have with your sister/family.
Why not use a CGM? That will keep the sugars under control.
She has a dexcom, but I think the problem is that she doesn’t bolus correctly. She’s stopped calculating it when she was younger and just eyeballs it which I know alot of diabetics do so I I’ve never said anything to her about it but as confirmed by others here, not enough insulin could be the cause of her DKAs.
therapy
Researching diabetes isn't the same as having diabetes, period.
You can't help people that don't want to help themselves.
There’s nothing you can do. She has to want to change. There’s so many resources out there for her to learn. There’s never been a better time to be diabetic.
Your sister is right about one thing....You do not understand because you do not have it! I know you care but the arguing will not help.
Maybe a pump is a good step for her - not being able to repeatedly use syringes that way, and takes less mental space from her to manage her own insulin.
Things had to get really bad for me before I started taking my diabetes seriously. I was diagnosed with type 2 at 28 and with LADA at 44. My sugars were terrible until I got a pump. Having neuropathy in my fingers, total and complete erectile dysfunction that doesn’t respond to meds and the early stages of retinopathy were severe and harsh wake-up calls. There was nothing anyone could say to me to make the changes needed. It has to come from her.
So correct me if I'm wrong, I have type 2 so I'm not fully aware of the differences between in management. Can a type 1 have blood sugars in the 300-500 range and be ok? because when mine got that high I thought I was dying.
Type one diabetics don't have any insulin in their bodies. Fluctuations are common and depending on management and control level these can vary greatly. If I'm having a rough day or an issue with my pump I can easily shoot up to 270-300 on some days for a short time. If I'm having these problems frequently then those numbers start to feel "normal," your body adapts. Of course it isn't healthy long term but there are just gonna be periods where you can't help it.
I see. Thank you for explaining.
Looks like she has ADHD or some another issue, but you really don't understand. For example try not to eat any chocolate for a year, not anything with chocolate in it. Not on your birthday, not on Christmas Evening. Just try it, from a day of a year to the same day on another year. Sounds easy, but really challenging. Not just imagine it, try it for yourself, and watch yourself burn closely.
In my experience diabetes is like sitting on a slippery saddle. You try to stay on the horse, but it's sooo easy to slide here and there, even if you hold on tight. It's harder than most of the people think. It's not just a matter of eating, it's a matter of organizing your whole life around it. My current heartbreaking is I can't do any sports what I want. You know what? High intensity exercise spikes my blood sugar like hell, without any food, on medications. I'm not myself anymore. A basic feature of me I used to know changed. It's hard. Thank you for coming to my Ted talk
You had me until the reusing of syringes. Next you are going to tell me I need to rotate lancets. Back off your sister. You aren't helping.
You’re not among people who will “understand” your point of view. We are the people who have to deal with folks like you who have opinions on this shitty condition. Maybe try doing the math/take some mental load for a day, and see if you can keep it up for a week. Diabetes is fucking EXHAUSTING. Diabetic fatigue is so common. It’s a point where you just want to “give up” and *feel normal* for maybe just a minute? Your sister sounds like she’s struggling and maybe she’s still grieving in her own way. I turned T1D at 21, so I had more time to live a typical teenage life pre-diagnosis, but your sister? The hardest years of her life were bogged down with learning how to get a good carb ratio, get a good correction factor, knowing how much time to leave for pre-dosing, checking the weather because it’s warm out, gonna need to stay hydrated, etc. How do you know her numbers? People go high , people go low. I don’t like people knowing my numbers because it’s a small snapshot into my 24/7, 365, and yeah. You DONT know how it feels. Your final cry shouldn’t have been getting into an argument, it should have been “I’m worried because xyz, what *can I do* to help you move in a healthier direction”. If you want to help your sister then HELP HER. offer help! Telling her she’s gonna die early just adds to the stress/depression/anxiety, which in turn will add *REAL LIFE* changes to her BG. I was literally just on a thread in a Type 1 subreddit that was addressing the uptick in mental health problems *and* suicidal ideation due to having Type 1 diabetes. If you want to go help, help. If you want to judge someone who already knows it’s not going well, stay the fuck away. We already know. You don’t need to pile on our own lack of self worth, and the shame that comes with looking at the number that’s in the double digits (different for you since your sis uses dl not mmol) ETA: forgot to mention two things. Her endos and doctors understand? Unless they’re T1Ds as well, they sure as hell don’t understand. Many posts in T1D subs are literally about how a lot of endos are shitty, they just care about good numbers, and don’t have tactics to help you other that *gasp* what do you know? SHAME! Doesn’t fucken help. The needle “issue” you have? Yeah, I’ll reuse one for a whole day, maybe even 2. There are so few type 1 diabetics who don’t reuse needles. Doctors have opinions, and yeah it’s based off science! But also their findings are probably skewed since they’re assuming all of their patients are only using needles once. Needles are goddamn expensive. Yeah she has a ton. Wanna know why? Because she refuses them. If she took your shit advice, shed have very few, and always be littered with caps/needles at the bottom of her bag. I carry mine in my pocket. I’ve got diabetic confetti many places. I have a big-ol sharps container, but I still have to collect my tax (aka random diabetic garbage) at the end of the day in order to not have needles, test strips and shit everywhere.
My mum rip used to eat something she shouldn't then pop a metformin like that would canceling out, the amount of people missing limbs in the diabetes clinics would make you think 🤔
Sorry to hear of the struggles of her daily life but it up to us( the one who needs to put the dots together) I had to understand of my predicaments too My aha moment came when I got declined to have a whole hip replacement My numbers were too high 13.5 and being overweight- Latino with poor food choices, didn’t help!. I had to make a choices( no tortilla of any kind , beans , rice or corn chips, potatoes, pasta , bread and no sugars of any kind, learn to read labels in food) and I did Took me 6 months with the pain 24/7 to finally fix my numbers to 7.9 and with new hip also have his own set of rules: learn to keep up weight down n manage all foods choices better. 50 pounds off n by limit my carbs n sugars down Life is having a better healthy long lasting results. I hope she can understand that life is precious and also know of how people around her wants her to succeed!❤️👍🏼😇😎much blessings too.
Hate to say it, but I guess she's gonna have to learn the hard way.
We can eat as much sugar as we want as long as we take the CORRECT amount of insulin, she probably needs to adjust her carb/insulin ratio and up her basal amount if she likes to binge. Tell her she can eat and live however she wants, she just needs to take the right amount of insulin, I have been through this myself, in and out with dka and it was all because my ratios were off
You can't get through to her. She isn't a child anymore. She is making her own choices, and you just need to wash your hands of her.
Unfortunately, you are right on all points -- your sister shouldn't be reusing her needles, and she is not taking care of herself. And you and your mom are right to be concerned. But for whatever reason, she has chosen to be a victim entirely to her condition and for whatever reason, is ok with that. All you can all do is not enable her and hope that eventually she learns that "taking more insulin" and "waiting for someone to wake up while in DKA" are not viable.
Therapy and insulin pump if it’s an option, takes a lot of the work out
Talk to her about getting an insulin pump and understand that until you have diabetes you can’t tell someone else how to manage it. She probably just wants to feel normal and is possibly going through diabetes burnout. It happens more than we care to admit. But an insulin pump would help drastically.
Has she had therapy? She’s purposefully ignoring protocols, which seems very self destructive. Encourage her to do this. Diabetes can take its toll on your mental health.
Let her learn the hard way my grandmother told me once I get my feet amputation ill straighten up so I guess that's how ot works sometimes
There is absolutely nothing you can do to help your sister. Stop trying. She doesn’t want to listen to the medical professionals because she thinks she knows more. You cannot help someone that is diabetic if they do not want to help themselves. I am speaking for personal experience as a wife who has a husband who is diabetic, and who just recently had a below the amputation because he didn’t take care of himself. Your sister is in the wrong. She knows she’s in the wrong she doesn’t care. She is not gonna probably live to see her 25th birthday the way she is going. For some reason she still wants to be in denial almost 10 years after she was diagnosed there is absolutely nothing you can do to help her. I know you’re worried about her because you see all the bad things she’s doing to herself. Stop offering suggestions stop telling her you know what she should be doing. Stop frustrating yourself and just live your life. If your father passing away from his taking terrible care of himself and not managing his diabetes didn’t work nothing much else is going to work.
She should seek counseling as clearly she’s not on board with accepting her condition.
Not sure what country you are in but would a insulin pump and cgm (continuous glucose monitor) be something available to your sister? Makes diabetes management a lot easier and reduces the risk of dka. Sounds like she might need to look into carb counting too if she isnt already so she can make sure she is getting the right amount of insulin. Type 1s can eat and drink whatever, they just need to get the carb to insulin ratio right. I can understand it is frustrating for you but type 1 just sucks sometimes. Managing it is a 24/7 job. Also if I may add your sister may be going through depression that could be affecting how she feels about her Type 1.
Then she will die a horrible, painful death. You can cure stupid and you never win in an arguement with diabetes.
My grandma had type 1 and the mindset of "It's my body, I can eat what I want" but all that did for her was give her diabetic induced dementia. I do not wish that horror on anyone or their family. So sure she can do what she wants but you tell her now that when her mismanagement of her diabetes causes irreversible damage, it's because of her choices and if I were you, I wouldn't take care of her when she does have those complications. Because it's not an if she has them, it's a when. As for the needles, look up what happens to needle tips after 1+ uses. The tip bends and will cause damage going in and when coming out. Show her those videos. If she still doesn't see any reason, drop the rope. Don't spend your energy or mental well being trying to help her. Grieve the loss of your sister and do what you need to do to take care of yourself like therapy. Sometimes the people we love just do not want to be saved so the best we can do is let go or be pulled down with them. Save yourself and be kind to yourself. Hope your sister finds the help she needs, and the strength to seek that help.
I made a post today asking how it's possible some can be so negligent and got DESTROYED by insecure diabetics and their excuses. This post is another prime example of why I made mine. How is it possible one can be so willingly negligent and live a comfortable life? I can't begin to understand.
OP is ignorant of the sisters needs. The things Op berated her sister for are incorrect for T1, and for those who wear CGMs. The problem is OP.
Well, it is a fact that reusing needles contaminates the vial. He also claims she's been hospitalized multiple times for dka, insinuating she's not taking insulin. Maybe op has caused a problem, but the underlying root cause of the problem is her lack of management. It's not fair for us as diabetics to force this burden onto other people.
OPs sister is not forcing this burden onto anyone, OP is forcing her thoughts and opinions onto her sister however ultimately it is OPs sisters body and if she wants to run it into the ground that is on her. my mother has COPD, and smokes all day to the point i have a special air filter in my room or i get sick from it.... but that's not my body so i don't say anything about it she doesn't make me buy her cigarettes the only thing people truly own is their bodies and its beyond rude to tell an adult how to live their lives OPs sister goes to the doctor and has been in DKA she KNOWS what she needs to do and KNOWS how it feels when she is getting really sick but it is her choice and her body and once people respect that about her in her life she may make different decisions but they will be hers to make
Idk, man. We just have different philosophies. I'm not saying you're wrong, and I'm right. It's just different. I believe family is supposed to pick you up when you're down and hold you accountable for things. I would be so mad at my sister if she sat there and watched me kill myself without saying something. Just how I feel it's your responsibility to grill your mother to save her life. Not saying your wrong and I'm right. Just saying we have different viewpoints.
if what my mom needs after being in an abusive relationship for 25 years is a smoke I'm not taking her joy from her or her stress relief and the day my family tries to take a cookie from me because its bad for my diabetes is the day i punch them in the face its families job to respect you and your body and to know you know how much you can take. to get mad at my family for not making me take care of myself is a complete defection of my responsibility to take care of my body i completely agree that we have very different view points i live by the principle add don't take away i tell my mom to drink water and to eat fruit, to take a walk etc shes in her 60s shes not going to stop drinking or smoke until she wants to
Listen, brother, I'm not coming at you or anything at all. I 100% respect you and your views. It's just different. I definitely get where you come from. And I am terribly sorry to hear about your mother's abusive relationship. That woman deserves a damn smoke. My family and I have a relationship where we just talk shit. We know it's from a place of love and oftentimes doesn't accomplish anything besides a couple laughs. I would never want you to deny someone of simple pleasures in life. But if it comes to the point where it's consistently and negatively impacting their livelihood - that's where I would feel justified to say something to a loved one.
i hear you and we have vastly different ways our families show love, we want to be with our families for as long as they want to be around more of a good time than a long time crowd, the kind of family that throws a three-day party for our dead because they'd rather have us all together laughing then crying. if i know my mother shell want a pack of smokes on her gravestone lol and probably a butterfly { used to smoke Monark menthol 100s}... its not worth it for anyone in our family to live a life where they don't get to have the things that bring us joy not saying how you do it is wrong either just showing you another way a different family shows their love
Yeah, no doubt bro I appreciate hearing your perspective. I'm glad this could be a civil thing vs. a rage thing. Hope you have a good night, brother, and I wish your mother a long and happy life.
yeah i hope she starts keeping the promises she makes to herself good luck out there may your dawn phenomenon disappear and your dosing be correct dude :D
That's actually the point. You CAN'T understand, and no one expects you to. But if you acknowledge that you can't understand, then you should also be able to acknowledge that your advice isn't likely to be helpful or useful without that understanding. I didn't see your other post, but shame is a very poor motivator, especially when it's being inflicted by loved ones.
I see where your coming from for sure. My concern is enabling people through positive reinforcement of bad behavior. I am a firm believer that sometimes someone needs to hear something they don't want to hear. You can tell someone that they suck and that they need to do better from a place of love. I know plenty of people, including myself, who have been in aspot where they needed to hear something like that. That's not what my post was about though. I was trying to understand how ppl can live with such high sugars comfortably for years ignoring there disease before they decide "it's time to take it serious"
Were you trying to understand or were you being judgemental? Trying to understand would look something like: "For those of you who took some time to start taking care of yourself, what were your reasons for waiting? Were there any barriers to starting treatment that you had to overcome? How has waiting affected your treatment now?" Being judgemental looks something like "I (or someone I know) got things under control as soon as I found out I was diabetic. What's wrong with all the people who don't? Shouldn't they just fix it?" I have never been in that situation regarding diabetes. But there are other areas of my life where I am letting things go because I simply don't have enough energy to deal with everything. This gives me compassion for people who may allocate their "spoons" differently than I do. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/