Apr. 16th, 2016

emyrldlady: (Arrgh)
I know I hardly post here anymore. But I'm cross posting this everywhere. Just need to get it out.

This is going to be long. It’s going to be a rant and a lecture. It’s going to be about diabetes and those well-meaning friends. So if you don’t want to hear/read it just skip it. But if you read through this and at the end feel the need to make a snarky comment you will be unfriended. No matter how funny you think you are… you’re not. I don’t care if being sarcastic is ‘your thing’, it’s mine too. But this isn’t the time or place for it.

To the person who posts a picture of a giant cake and or ice cream and candy and says #I’m gonna get Di-a-beet-us. Fuck you. To the person who thinks it’s funny to belittle my LIFE THREATENING DISEASE. Fuck you. I didn’t get sick from candy. I got sick because a part of my body stopped working. You don’t mock someone for kidney failure or cancer so stop thinking this is a funny disease. It’s not.

Did you know that your own body naturally produces glucose (sugar)? So if I never ever EVER ate sugar again I could still die.
Diabetes and complications from diabetes is the fastest growing cause for death in the US. Yes there are a lot of correlations to sugar consumption and the American diet in general. If you are genetically predisposed you can somewhat stave it off with a sugar free/low carb diet. But if your pancreas doesn’t work it doesn’t work. Some people are born with a non-functioning pancreas, they are listed as juvenile diabetes or Type 1. I was diagnosed in my early 30’s with type 2 because my pancreas kinda sorta maybe a little worked and there is no way an adult can be Type 1. Guess what. I wasn’t a ‘bad diabetic’ I was misdiagnosed. I am Type 1, or to be more specific Type 1.5 which is an adult who is insulin dependent because their pancreas does not work.  Mine had a limited life time and no warranty. It made it to 32 and started shutting down.

When I post something about ‘eating all the things’ because of my low blood sugar. It’s called gallows humor.

Let me walk you through a middle of the night low for me. I’m asleep, it’s 3am and then suddenly I’m jolted awake with the urge to vomit. I realize I’m in bed and I’m SOAKED with sweat. I try and focus my eyes and can’t. Everything is blurry and my head is pounding and I’m shaking and can barely struggle to sit up. I grab my blood sugar meter which I keep under my pillow for just this reason. I fumble to get a test strip in and poke my finger, I often have to do this a few times because dehydration is also a symptom. I finally get a reading and it says 42. Under 40 and you’re usually in a coma. How do I know this? Don’t ask. Now what all the doctors and practitioners tell you is to take 15g of glucose and wait 15 minutes to test again. Well that’s all nice and dandy but your body is telling you to FIX THIS FIX IT NOW OR YOU WILL DIE I WILL KILL YOU FROM THE INSIDE I’M NOT KIDDING YOU WILL DIE!!!!
Now at 3am shaking, trying not to vomit and sweat pouring down your face who are you going to listen to? The doctor who has not ever experienced this or your body? Hmm? Yeah, you’re reaching for the snickers I know you are. And so am I. Snickers, candy, glucose tablets, a ham and cheese sandwich, apple sauce everything and anything you can shove in your mouth just to MAKE IT STOP.

Now you wait. You’re exhausted, because, hey first off its 3am and you should be asleep. Then you’re body has just done the equivalent of a marathon panic attack and you’re afraid to go back to sleep because you may go into a coma. You check your sugars again, and in 15 minutes from when you ate everything in your fridge you’re sugars are only at 95. Well that’s what you want them to be so you think it’s ok to try and get back to sleep, you don’t fall into a deep sleep because you’re still hyperaware of your body. So you doze till the alarm goes off at 6am. Your mouth feels like you ate your pillow and well, that’s a possibility because you really aren’t paying attention to what you’re shoving in your mouth during a low, so you down a bottle of water. I have a mini fridge in my room and reach for one before I’ve even gotten out of bed.  But what’s going on is that you’ve actually not processed all the sugar you ate during the night and when you check your morning sugars it’s over 300. You hang your head in shame. You berate yourself for doing this. You know better. You don’t need anyone else commenting on it. So now you adjust your morning insulin based on your sugar levels and wait till you know what you’re going to have for breakfast for the rest. Yay! More shots, or in my case extra pumping.

This is something that happens to me 3 or 4 times a month.

Since I’ve been diagnosed I’ve been near death at least 8 times. Hospitalized for DKA. I have woken up in ICU with an IV in my chest because they couldn’t get my veins from dehydration. I’ve had severe diabetic retinopathy where I was pretty sure I was going to go blind. I’ve had to give up theater because I can’t stand for long periods of time and have short term memory issues. I’ve had severe swelling in my legs to the point that I felt my skin was going to tear apart. I’ve had a collapsed lung and severe pneumonia. I’ve had ER doctors say to me ‘How the hell are you not dead?’ I joke and make light of it, again ‘gallows humor’. I have depression and have often thought ‘if I just take too much insulin I can fix this permanently’.

I think most of you have heard of the ‘spoon theory’ and have a basic knowledge that people with chronic diseases of which I have TWO, have only a limited supply of energy each day and we never know how much until we wake up. How much energy do you think I have after a 3am low? None.

I am a ‘pull yourself up by the bootstraps’ kind of person, I hate whiners and I hate to whine. I’ve had to do for myself my whole life. And while I’ve got a few friends who ‘get it’ there is a world of people out there who don’t. I persevere and push through as best I can. I have no other choice. There is never a day off. There is never a ‘good day’.

So when I say I’ve ‘eaten all the things’ it’s because my body was trying to kill me and I over compensated. When I eat something sugary, I compensate for that too. I take extra insulin. I walk more, I calculate what goes into my mouth all day, every day. I can guestimate most everything and I have an app that helps me keep track.

I’m not ignoring my illness. As much as I’d love to, I can’t. Ever. So don’t look down on me and think or say ‘if you didn’t eat that’ because the next person who does that is no longer my friend. I’ve seen way too much of this attitude and it has to stop.

Stop blaming ME for my disease.

You’d never do that to someone who has cancer. Why is it acceptable to mock and point blame with diabetes?

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