This is actually going to kill me


(SuperSam101) #1

This disease is actually going to kill me. I am writing now on a blood glucose of 19 and it hasn’t dropped below 16 for a month and a half,


(Ray) #2

Sam you should seek assistance from your medical team (endo, educator, etc). I’ve had experience with sugars not coming down for a few days do to illnesses (cold, flu) but never for that long of a period. Wishing you well.


(joe) #3

@supersam101 didn’t you have a hypo 8 days ago? Anyway. A good walk will bring down most stubborn highs unless you are sick with a cold or taking steroids. You probably should have s long talk with your doctor.


(BookwormNerd13) #4

Sam @supersam101
It sounds like you should talk to your doctor or care team. Everyone has periods when their T1D is a bit harder to control but yours sounds like more of a long-term problem, both physically and mentally. If you haven’t already talked to a therapist, I recommend doing so. Tell your endo about your concerns with your blood sugar levels and your negative feelings towards your condition; they’ll be able to help you find a way to deal with both.
Best of luck :slight_smile:


(SuperSam101) #5

@bookwormnerd13 I did speak to my doctor… He made it worse… And I don’t need to talk to a therapist, for what… “oh, the world hurt my feelings”

The therapist: “yeah that happens”


(Richard) #6

So… what are blood sugars? 19? you mean your H1c? I have been T1 for 40 years. I fought with every doctor i have ever had. I have done the dummest things you could imagine. But I also pre-date synthetic insulin and most of the tech we use today. My body does not come up with orange juice, a walk does not bring it down. In essence, I am about as T1 as you can get. Took me a long time to defend that. Now life is easier. I was never easy to control So I learned what I needed to do. Dr didn’t do much. So now I tell them what I did to fix me. Not the other way around. But I am 47 now. If you are still young, then that is a factor and you will have no choice but to rely on doctors… But I am curious…


(Dennis J. Dacey, PwD) #7

Hi Richard @liti1gator,
A BS reading of 19 mmol/L is equivalent to a BS reading of 342 mg/dl; 16 mmol/L = 280. An HbA1c of 16% indicates a minty day BS average of 420 mg/dl or 23 mmol/L.

Being another ‘old-timer’ myself having been diagnosed with diabetes [long before refinements in names such as “A Type”, “C Type”, “TypeOne”, etc. came into use] and many of the new technologies came into existence, I firmly agree with you that we must be fully aware of our own bodies and be able to “read” how we are feeling and why. Certainly many of these new technologies are wonderful but if a newly diagnosed has relied solely on certain tools [such as CGM] and it fails for some reason trouble could ensue.
On another of your points, I’ve had some really interesting “arguments” with an endocrinologist advising me who also happened to have diabetes.
And To tie this deviation into the original topic line; yes Sam, diabetes will kill you. That is, it will if you do not take an interest in your well being and set your goal to properly managing your diabetes and go on to live life as a real person - I’m pushing 80 years old and I’ve had diabetes since I was a kid.


(Richard) #8

I’m happy to meet you my friend. The best endo I ever had started our very first conversation with “you know that this will kill you someday, right?”. That’s how I knew he was legitimate. Because it was true. The question is when. That was up to me. We are different. It affects every second of our life’s. I just hope these younger kids learn to accept it and go from there. I consider myself lucky to only know this part of me. To be diagnosed as a teenager, in my opinion , would me a much worse fate.

-Richard


(Dennis J. Dacey, PwD) #9

It’s good meeting you Richard @liti1gator, I’ve enjoyed reading your comments - yes, I read every post to this site. Let me offer you a Welcome to TypeOneNation and a new member - one experienced with living fully with diabetes.
what you quote above is true in many cases, but not in all. It is true that diabetes has the “ability” to kill, and that was recently brought to my attention by one of my sisters when she announced for everyone to hear “… you were supposed to be dead more than 50 years ago” - this was at a banquet with many listening. It is true that when I was diagnosed in the 1950’s that very few who were diagnosed with [juvenile] diabetes lived to adulthood - my siblings all knew that but luckily I was never told.
I really didn’t take care of myself for the first two decades but then had a change of mindset and began treating myself as a science project and learned all that I could, and volunteered my body for many trials [and errors] helping advance diabetes management and care. It wasn’t long ago that an endocrinologist said that would die WITH diabetes but that it would NOT kill me.


(Richard) #10

True… I guess what I meant was , we won’t die of old age. They will always attribute it to complications of diabetes.


(SuperSam101) #11

@liti1gator you said “I hope these younger kids learn to accept it…”

That is a legitimate statement, but (there’s always a but) how can we learn to accept it, in a world where all everyone does is point out your mistakes or weaknesses? I am in college and all I get is (and I think I mentioned this in another of my topics) “oh there’s that guy that’s diabetic” when actually I might have been good friends with that person two years ago (and yes that is when I was diagnosed). One day is all it took for me to lose any kind of recognition. While now I am classified as weak? (thats a lie in itself because I am stronger than any of these fools). These fools used to be my friends and I was theirs, but now I’m just there to be poked fun at.


(Richard) #12

I’ll be honest. In my 40 years this way I have NEVER made it obvious I had it. I was a wrestler and that was hard and I still only told the coaches. I did this BECAUSE of exactly what you mentioned. Wearing a pump has made me more visible. But even then I shrug it off. Nobody will get it. Ever. But remember, too, that you are what you project. I’ve never one time used or allowed my condition to be a reason I couldn’t do something. That is important to me. The only time I really get going is when someone tries to act as if DIABETES is the same for all. It isn’t. T1 is NOT like T2 and if I hear something to that effect I will tell the room that I am a T1. Just own it. Realize it is you, and leave it at that. Tell girls you get to ‘know’. But that’s it. Don’t tell bosses. Don’t tell teachers. Don’t talk about it. This will allow you to excel without judgement.


(SuperSam101) #13

@liti1gator it doesn’t really help when the entire school knows because they saw. Also “to be the reason I couldn’t do something” I couldn’t eat a birthday cake
So that was something I couldn’t do because of diabetes (yes that’s a silly example), but I also couldn’t go for a run, walk too far, go on camps etc. Because if I pass out people are so clueless I’d probably die.


(DDrumminMan) #14

EXACTLY THIS 100%

This is exactly what I do (including the years of experience :yum:).


(wadawabbit) #15

Hi @supersam101. I’m sorry to hear about your experiences. I find it’s important to get some people involved and aware of my diabetes so they will know what to do in an emergency. You say you can’t go to camps because you would die because people around you wouldn’t know what to do. So tell them - not everyone, but let a few friends know what to look for and how to respond if you’re not able to handle things yourself. Admittedly everybody is different, but there are diabetics who hike, bike, camp, run marathons, and do all sorts of super active things because they have found ways not to allow their condition to hold them back. I’m not saying they just went out one day and ran a marathon - they worked with their doctor/DNE/nutritionist to put a plan together, then started off small and tweaked things as necessary so they were ready for the big event and knew how to adjust their pump settings, injection doses, carb ratios, etc. I’ve only read a little bit about you so I certainly can’t judge and don’t mean to. But if I could make a suggestion I would say work with your diabetes team to help you get things stabilized. Make sure you see an endocrinologist who specializes in diabetes - some have other areas of specialty. If you don’t like your doctor, find another one who is willing and able to give you the attention and guidance you need to get and keep things under control. I don’t know what it is the whole school saw (I may have missed that particular post) but hopefully you and your team can get things stabilized so what people see in the future is a person who is friendly, funny, strong, smart, outgoing, fun to be around - fill in whatever words you like - who also happens to be diabetic. I’ve been diabetic for 55 years now, and many people don’t even know it. I’m not trying to keep it a secret - up top I suggested that you let some people know, and I do inform some trusted co-workers, friends at church, etc, but I don’t make a big production of it and inform everybody around me. So unless there is a reason to let someone know it usually doesn’t come up unless they see my pump or CGM, which is a good conversation starter. It’s certainly an important part of who I am, but only one of many pieces that go into making me, me; and you, you. Best wishes,


(wadawabbit) #16

Me again. When I was first diagnosed in 1963, what most people believed about diabetes was “You can’t eat sugar.” I’m certainly not saying we should devour everything in sight now - that’s not good for anybody - but now we have tools such as carb counting and insulin-to-carb ratios that let us manage and enjoy formerly forbidden foods, at least now and then.
I’d like to add that diabetes isn’t the only thing keeping people from eating certain things: some people are sensitive to gluten; others have allergies to nuts, certain spices, or dairy products. Some are on a strict diet for weight loss, they’re training for the next season of American Ninja Warrior, or they enjoy particular lifestyles such as being vegetarian or vegan. So rather than saying “I can’t eat that because I’m diabetic,” and sounding angry or resentful about it (I understand you may be), you could say:
“Thanks, but I’m stuffed.”
“I’m watching my diet” (lots of people say this, diabetic or not).
“I don’t like sweets” (not everybody does).
A simple “No thanks” (there’s nothing saying you have to eat dessert in the first place).
Or you could simply have a very small serving - even just a couple of bites but not so much to push you over the edge - if you feel like it would help you fit in.
And finally, I had a couple of small incidents when I was in college, but I found people responded with care and concern rather than criticism. Give them the chance and you may find the same.