A quick guide to ketones for T1Ds

 

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Image credit: Angela Stevens

When I was first diagnosed with type 1 diabetes I had what is called diabetic ketoacidosis. Before this happened, I was constantly peeing; I had no appetite; I was extremely thirsty; I had become skin and bones; and would have died if I hadn’t been flown in an emergency helicopter to Loma Linda University Hospital.

Ketones are deadly and are often misdiagnosed by medical professionals as the flu.

#1 What are ketones?

Ketones are unhealthy and potentially deadly acids in the bloodstream.
People can develop ketones when:
*You have have high blood sugars
*Miss a dose of insulin
*Fail to give the correct amount of insulin
*Develop a cold or flu
*Exercise with a high blood sugar

Note: A healthy amount of ketones for a diabetic to have is none.

#2 How do they impact your body?

Ketones impact every part of your body.
Ketones make you:
*Lose weight in a short amount of time
*Dehydrated
*Confused
*Shake
*Extremely tired
*Extremely thirsty
*Vomit
*Give you a fever

#3 What to do when you have them?

*Drink a lot of water to flush out the ketones
*Treat yourself as if you have a cold or flu

  • Do not go to school or work
  • Try to eat bland foods that will not upset your stomache

*Give yourself a correcting dose of insulin

    A) Guide to giving yourself a correcting dose of insulin
(The amount of insulin may vary from person to person. This is my personal guide for myself) 1-5 ketones = 1 extra unit of insulin; 5-15 ketones = 3 units of insulin; anything higher, go to the ER for DKA. If you have vomited go to the hospital immediately for diabetes ketoacidosis. You may not have ketoacidosis but it is better to be safe than to be sorry. Diabetes ketoacidosis is deadly and needs to be treated immediately. Note: You do not have to eat a meal to give yourself a correcting dose of insulin.

#4 What never to do when you have them?

Do not:
*Do not exercise because it will increase the amount of ketones you have in your body
*Do not eat anything that has a high sugar; or high carb content
*Do not drink anything that contains sugar or carbohydrates

#5 How to check if you have ketones?

You check to see if you have ketones by buying a ketone sticks. They can be purchased at almost any drugstore and online. All you do is simply pee on the stick; it changes color; and then you use the color guide to reveal how many ketones you have.

On another note

Ketones are the devil! They have taken the lives of many diabetics. If you notice that your blood sugars keep staying high for no reason then please, get in the habit of checking your ketone levels on a daily basis.

 

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Let me help you patronize me

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Me (left), Fairy Godmother (Right). Photo Credit: Julie Meilicke

We’ve all heard ill-informed statements about type 1 diabetes. They range anywhere from a little annoying comment to a damned right offensively stupid remark. They may come from a well meaning extended family relative or from Jane Ignoramus at the grocery store.

Here are a few things people think I want to hear:

#1 I want to read random articles about type 1 diabetes that in no way relate to me at all

This has happened to me many times, when family members who I haven’t seen in two years send me a random article about type one diabetes. I remember one in particular, about a woman who wrote that having diabetes isn’t living life. She wrote that it’s just going through the motions until you die. I think I was supposed to feel glad that my family member was trying to understand my disease. Let’s get something right, I have diabetes. Diabetes doesn’t have me. If I want to do something; I’m going to do it! I’m here! I’m alive!

#2 I want to hear about cures or curing diabetes

People have told me to go to the Amazon Jungle and smoke ayahuasca, or to eat cinnamon, or that the government is hiding the cure! The truth is that none of these things are going to cure my diabetes. I have to deal with reality. If there is ever a cure that’s great! If not, then I’m still going to have to focus on taking care of myself.

I would love to wake up tomorrow and hear on the news that there is a cure for diabetes, and all I have to do is go down to CVS and pick it up. I’ve had t1d for 20+ years, and I have heard for ever one of those years that a cure is five years away. Who knew five years would take so long?

#3 I want to hear about your uncle who lost weight and now doesn’t have diabetes anymore

First of all, t1d is not caused by weight! It is an autoimmune disorder that causes your immune system to attack the insulin producing cells in your pancreas. Some type 2 diabetics can lose weight and change their lifestyle in order to live life like non-diabetics, but t1ds are not this way. T1d is for life unless you are lucky enough to have a successful pancreas transplant.

#4 I want to hear all the brilliant advice you have to give me

I’ve only had diabetes for two decades and have experienced many tiring and horrible physical experiences; but please tell me how you think I should eat or how I can raise a low blood sugar by eating an orange. You obviously know better than me and are right for arguing with me… not!

 

 

 

Hypoglycemic-Hallucinations

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Photo Credit: Julie Meilicke

When I was three to around five years old, I would have horrific night terrors of ghouls, ghosts and monsters. When I would wake up, the monsters didn’t go away! I had what they call hypo-hallucinations. This is when your blood sugar goes so low your brain starts to freak out and you hallucinate (similar to having near death experiences)!

In the middle of the night I would wake up screaming and try to run away from these nightmarish creatures.

My Dad would have to chase and hold me down, so that my Mom could force orange juice (that had loads of sugar in it) down my throat.

When I was first diagnosed with T1D, I would have extremely low blood sugars, like blood sugars of 12 (no joke)! It’s been almost 20 years since I last had a hallucination, and I credit this to my body being mature enough to handle my diabetes.

What didn’t help my situation out was that my parents were fine with having scary movies and television on that I probably shouldn’t have been watching. The R-rated movie “Blade” stands out in my mind.

This is a very scary situation to think about being in, especially, considering that many t1d’s are already terrified of dying in their sleep from a low blood sugar.

Hypo-hallucinations are something that many people including diabetics haven’t heard of until they’ve experienced them for them self.

Personally, I try to avoid going low while I’m asleep by having a snack before I go to sleep (ex. a small packet of Famous Amos Cookies with a spoonful of peanut butter) and never correct a blood sugar below 200 at night, but do what you think is best for you!

I can’t really remember much about my personal experiences with the hallucinations occurring; but I do happen to remember the last time it happened.

I woke up in my bed at our old house and saw a skeleton wave at me. I didn’t scream. I closed my eyes and went under my covers. I kept telling myself, “It’s not real!” because that’s what my Dad always told me to tell myself. I finally got enough courage and ran out of my room.

To this day, I’m still terrified when I wake up in the dark when I’m low.

A Diabetic for Halloween: My guide to Halloween

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Right: Grant Stevens (My Dad), Left: Me. Photo Credit: Julie Meilicke (My Mom)

My Story

I was diagnosed with type 1 diabetes two weeks before I turned three years old (my birthday is on November 5). When I was diagnosed, I had ketoacidosis, a blood sugar over 600 and was in a diabetic coma. I finally got out of the hospital right before Halloween. My parents didn’t really know how I should be eating, so, for Halloween they didn’t take me trick-or-treating they let me dress-up and eat spaghetti. At the time it was the right thing to do because my blood sugar was uncontrolled.

Here is my personal guide for t1ds and or parents of t1ds who are afraid of Halloween.

TIP #1: Use common sense

  • If your diabetes is currently uncontrolled don’t start eating candy!             
  • Always check your blood sugar before you eat anything… including candy!
  • If your blood sugar is high don’t eat candy!
  • Check your ketone levels and if you have any ketones… don’t eat candy!

TIP #2: Do what makes sense to you!

T1Ds all have different ways of managing their diabetes. I personally won’t drink anything that has sugar in it unless my blood sugar is low, but I’ve known other diabetics who will drink a Coca-Cola when their blood sugar is normal and give themselves the correct carb-to-insulin-ratio amount as needed. So, if at the moment, as a newbie, you feel weird about eating candy don’t do it!

TIP #3: Hoard your candy

A great and easy thing to do is to save all of your candy and just give it to yourself when you need to correct low blood sugars.

TIP #4: Use your snack times to your advantage

If you’re like me, your blood sugar tends to go low at night. I always like to have a snack before I go to bed to help prevent this from happening. On Halloween, I usually will have one Reese’s peanut butter cup and an extra spoonful of peanut butter (because protein helps stabilize your blood sugar).

TIP #5: Find out how “fun size” candy bars impact you

If you’re new to the T1D life try having one small “fun size” candy bar and see how it works out for you, and try to get more of a feel for it from there. Just take it slow. No one needs to eat three giant candy bars a day.

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Left: Julie Meilicke, Right: Me. Photo Credit: Grant Stevens

Personally

I eat a few pieces of candy throughout the day on Halloween, but my diabetes is controlled for the most part. I’ve also had it for over 20 years, so, I have a very good understanding of how food, candy, exercise, stress, and schedule impact my body. You have to learn that for yourself for the most part because we’re all different. For instance, some T1D’s are strongly impacted by stress and caffeine, and others are not. Either way, I hope this was somewhat helpful! Please feel free to share your personal tips and comments down below.

The deadly kindergarten

You could’ve killed me!

When I was in kindergarten there was an evil old bitch… excuse me I meant teacher! Who had it in her mind that I would fake feeling dizzy so that I could get attention from my Mom and everyone else. This teacher didn’t realize is that it is normal for people with juvenile diabetes to feel dizzy or sick multiple times a day because diabetics experience a polarization of many blood sugars throughout the day.           

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Jersey Films (Matilda 1996)

One minute, you can have a blood sugar of 35 and, within an hour or so, be 400. Basically, one minute you feel like you’re going to pass out or have a heart attack from low blood sugar, and the next you feel like you’re going to throw up and, well, then pass out.

There was this one day when I was in class, and I felt like the world was spinning all around, and all I wanted to do was lie down on the floor. I knew this feeling very well. I knew I was low.

I told my teacher, Mrs. Dumbitchass, that I felt low and I needed to have my Mom check my blood sugar. My Mom was a volunteer at the school because she knew that schools were not equipped to deal with type one diabetics, so, she always wanted to be close by so that she could save my life.                                   

Mrs. Dumbitchass told me, “Angela, if you make me call your Mom over from the other class to come into ours to check your blood sugar and if you’re not low, I’m going to have a long talk with your Mom about you making up feeling low because you want people to pay attention to you and get special treatment.” She then said, “There are a lot of times you say you’re low and you’re not.”

I thought to myself that I should just say I’m fine because my teacher’s mad at me and I should want to please her because she’s an adult… but then I thought, this lady needs to shut the fuck up! Who the hell is she to tell me I’m making up how I feel?

I politely said to Mrs. Dumbitchass, “I need you to call my Mom over.”

She called my Mom over from the other classroom that she was helping out and my Mom checked my blood sugar and I was in the early 50s (which is really bad).

I can still remember the icky way my teacher looked. It was a nice combo of “Oh wow, Angela could’ve passed out, had a seizure, or died; if her Mom didn’t get called over soon enough!” and “I’m a terrible human being for trying to intimidate a small child.”

What Mrs. Dumbitchass failed to realize, is that type one diabetes takes a toll on you mentally and physically. Often people experience extreme mental fog, sadness, exhaustion, migraines, insomnia, and nauseous even when their blood sugar is normal.

I’ve always had this fantasy of seeing ole’ Dumbitchass and telling her, “You could’ve killed me! You could’ve killed a five-year-old. Do you feel good about that bitch… cough, I meant teacher.”