Living with Juvenile Diabetes: Love, Emilie

Today is November 14, 2015. It is also National Diabetes Awareness Day.

My little sister, and a huge part of my world, Emilie, was diagnosed with Juvenile (Type 1) Diabetes at the ripe age of 21 in August of this year. Please take a minute to appreciate her as my guest writer. This is her story:

AN OPEN LETTER ABOUT MY DIAGNOSIS....

Over the past few months my life has changed in a way that I had never imagined. In a brief moment I felt like I had lost complete control of the way I wanted to live my life. That’s the funny part though, because what seemed like a quick and abrupt change, was actually something that had been boiling up for many months. The upsetting part about all of it was that the signs were there, but no one noticed – not even me.

On August 13^th 2015 I was diagnosed with Type 1 Diabetes.

Pre-Diagnosis. Pale, skinny, dark circle eyed Emilie

 I remember vividly, lying on the couch in the living room when my mom answered a phone call that would change my life forever. I had gone to see my doctor for a checkup that morning. I did not even THINK about the possibility of having diabetes. I initially went for a check up because I hadn’t received my “monthly gift” in 4 months. I spoke to my mom about it and she said to wait it out for a few months, and if it still doesn’t come back, we’ll speak to the doctor.

A few months passed and still, nothing. At my doctors appointment I got all the obvious questions, and a few blood tests done. I went home, feeling happy that I would soon get an answer to my problem.  

You see, I NEEDED answers to my problem. For the last few months, I had forgotten what it felt like to have energy. I was fatigued and moody all the time. I was hungry all the time. And I started to notice in the middle of July that it was strange how pale I was. I was nervous for my results, as I was almost positive that I was falling victim to some sort of mental illness…which would have been an entirely different battle.

A few hours later the nurse at the doctors office called and told my mom that my blood sugar was very high, and that she was trying to get ahold of my doctor to see what proper procedures we should take. Just before I had received the phone call I was sleeping on the couch “watching” that Nicholas Sparks movie, The Best of Me with my mom. After getting off the phone with the nurse, my mom woke me up and told me the news. It hadn’t been confirmed, but when I looked up at her from the couch, we both knew what was wrong.

For the average person, blood sugar levels are supposed to be between 4 and 7. When I got the call, my blood sugar was at 33. And that was before I had any meals for the day.

 It would only go up from there. Immediately I felt this lump in my throat, knowing in my heart that in a few hours I would officially be diagnosed with Diabetes.

I admit, I cried for a bit, simply because I didn’t know what this would mean. Would this change anything? Would it prevent me from doing anything?

My mom saw my panic and said the best thing that she could have possibly said in that moment –

 “Nick Jonas has Diabetes, and look at what he is doing with his life.”

 I know, to some of you, that may seem kind of lame, and really weird but I couldn’t help but laugh. Nick Jonas is not only someone that I can now look up to for this reason, but he also happens to be the celebrity that absolutely stole my heart as a teenager (Who am I kidding, he’s still got it…heeeeeey).

About 30 minutes later I got an urgent call from my doctor saying I must go to the ER immediately. After a quick 5 minute phone call, I was packing for the hospital, where I spent over a week. By the time I had gotten to the hospital that day, my blood sugar had risen to 38. My mom and I spent an uncomfortable night in emergency, waiting for a room to free up. That night, I was hooked up to an IV so that I could get properly hydrated.

It was a strange thing, living in the hospital. I longed for a meal outside of a hospital tray. I longed for a night of uninterrupted sleep. Being woken up every 2 hours at night to have my blood sugar checked, and to be given insulin to try to get my sugars in control every breakfast, lunch and dinner… it was all so new to me.

The doctors didn’t want to send me home before getting my blood sugar under control, and they wanted to teach me as much as they could about diabetes, and how to manage it. I remember that first night, they managed to get me down to 7.9 and man, was that a weird experience.

You see, because my blood sugar was so high all of the time, a more normal BS level felt like a low, to me. My head was POUNDING, I broke out into cold sweats all night, and I felt a tingling feeling all over my body (the weirdest sign of having low blood sugar). That week my blood sugars ranged anywhere from 15 to 25, and by the time I got out I was around the low teens.

So, one might ask, what do you do when you’re stuck in a hospital for over a week, on your last few weeks of summer vacation? Luckily, my family threw me a huge solid and visited me pretty much every second of every day. My dad even slept most nights with me at the hospital so that I wouldn’t be alone. Although the circumstances weren’t that great, I got to do some pretty fun and childish things again. My big sister, Katie, bought me crayons and colouring books, and my other big sis, Meaghan, helped me finish a huuuuge jigsaw puzzle that I thought would never get finished!

DIABETES: WHAT IS IT?

So, for those of you that don’t know, having Type 1 Diabetes, in short, means that my pancreas isn’t producing enough, or any, insulin.

 Insulin is a hormone that enables people to get energy from food. Since my body isn’t receiving any insulin from my pancreas, the sugars are not being broken down and delivered to the cells in my body, causing all of the sugar to be trapped in my bloodstream. Type 1 Diabetes is not directly linked to anything, that research has shown yet. Some believe that it is onset by genetics, or other environmental factors such as viruses. Unfortunately for me, there is no guaranteed answer as to why I have it and for now, I will never know how I got it.

WHAT ARE THE SYMPTOMS?

One of the symptoms of diabetes is being thirsty pretty much all the time. I was drinking GALLEONS of water a day before I was on insulin, so it was a huge surprise when the doctors told me that I was extremely dehydrated.

Although I was drinking a ton, I was also peeing it all out, including all of the nutrients and vitamins that I was getting from foods that I was constantly eating – also a symptom of diabetes. I was eating compulsively and LOSING weight… my body was essentially starving.

Some other symptoms that I experienced were a dry mouth and heartburn. I chalked all of these things down to other reasons. I was thirsty all of the time, because it was the summer and it was hot. I noticed that I would get heartburn any time I ate any really starchy and carb filled foods – so I figured I had a gluten intolerance. The reason why I was so sluggish was because I was FINALLY on summer vacation from a really stressful and work ridden school year. It all fit. But none of these answers were the right ones.

SIDE EFFECTS

            After being treated, I started gaining a lot of weight. It’s completely normal for my body to be doing this, because it’s actually accepting the food that I’m eating.

I lost 10 pounds from doing absolutely nothing and eating complete garbage, because my body wasn’t storing anything, and eventually it started attacking the only fat and muscle that I had in my body.

I felt like absolute crap, but I was comfortable with the size that I was.  It’s funny how much beauty constructs can run our minds.

I feel horrible saying this, but my weight gain as been one of the harder parts of this disease for me to accept. I have so many moments of insecurity. I wish I didn’t feel that way.

I have gained 20 pounds in less than two months and I feel like my body is betraying me – my pancreas gave out on me, and now I’m getting larger and larger by what seems like the minute.

If I’m being completely honest, I feel very self conscious, and uncomfortable in my own skin.

Some days, I will get home from school and my legs, arms and feet feel completely swollen. I think that the hardest part for me is thinking about what other people might think about me.

That sounds so superficial, and it really is the least of my problems, but it’s very discouraging thinking that people may be looking at me with judgment; not knowing exactly why these things are happening to me.

Some people may think that I don’t take care of my body, or that I’ve fallen into lazy, unhealthy habits. It’s upsetting because over the last year and a half or so, I have consciously been eating healthier, and exercising on a daily and it seems like all of that hard work and dedication is reversing.

 I have to keep reminding myself that this is a part of my journey, and that I need to take care of my body, not for other people’s approval, but for my own health and safety.

It’s funny, because some people may think weight gain is a result of being lazy or unproductive, or being unhealthy. When in actuality, my personal weight gain is a result of my body trying so desperately to take care of me… to ensure that I never go into starvation mode again. When I think of it that way, I can’t help but feel self-love, for the body that is working so hard for me. I wish I saw it that way all the time.

WHAT NOW?

With this new development in my life, I have a learned a lot of things. I’m slowly but surely gaining more control over my blood sugar levels. I am starting to recognize what foods are better for me, and which ones cause my blood sugar to spike (bananas, which SUCKS because I’m a monkey when it comes to bananas).

But the most important thing that I’ve learned in this new journey is just how amazing people can be. To be honest, I was very reluctant to tell people that I was diagnosed. It felt embarrassing, and I didn’t want people to look at me differently. But the more and more that I open up about it with people, the more I realize just how naturally compassionate and understanding people are.

In those first few weeks, I had people, whom I never would have thought, checking in on me. I’ve received unbelievable amounts of positivity and support from friends and family. But what I’ve found has helped me the most is people’s curiosity about everything.

Normally, people are afraid to ask questions because they don’t want to overstep their boundaries. But in reality, these questions are what make me feel comfortable, and cared about.

I want to personally thank all of those people that took time to have a conversation with me, and ask me questions about what adjustments I have to make to manage this. It’s helping you become aware, but it’s also making me become more aware and more confortable with what my life has turned into.

Overall, I’m realizing everyday that this doesn’t have to become my life, even though it is now a huge part of it.

 I am simply someone living with Type 1 Diabetes, and that’s it.

 But there were and still are some things that are difficult. When I first got diagnosed, my whole family was really worried, and very stressed and I had a hard time dealing with that.

 I, in no way, wanted to be the cause of that worry and stress. For a while I felt guilty for it.

With all the craziness happening because of my diagnoses, my parents couldn’t give much attention to my sister, and best friend, who was offered her first “grown up” job as a motivational speaker. She would be moving out of the house, into a new city for the first time in her life, and my parents barely had the time to celebrate with her because I was in the hospital. I barely had the time to celebrate with her, and enjoy our last two weeks of living under one roof!

 My other sister had to spend her birthday sitting at the end of my hospital bed. As the youngest in the family, I was used to getting a lot of attention from my parents, but this kind of attention did not feel good, at all.

With all of this happening I can truly say that this experience and journey has humbled me and has made me really appreciate the little things.

In the grand scheme of things, this diagnoses hasn’t negatively impacted my life as much as I thought it would. I can still eat everything that I would normally eat, and I can still do anything I want to do.

However, it’s the little things that I miss.

I can’t just eat whenever I want, without checking my blood sugar first and giving myself insulin; my stomach literally feels like a pin cushion for needles.

 I have to make sure that I have all of my medication with me at all times, just in case.

A few weeks ago, my sisters and I were out at a bar with some friends (a spur of the moment thing) and my sister, Meaghan, had to drive me home so that I could get my insulin.

I can’t leave the house without making sure I have sugar tablets in my pocket, just in case my blood sugar gets too low. It just feels like an inconvenience, really.

 I have to check my blood sugar at least 4 times a day, and give myself insulin before every meal and at night before I go to bed. For a little while I felt like my independence that I had started to gain was slowly deteriorating because I can no longer go out without my parents watching me like a hawk and making sure they know every step that I take. On top of that, my body is changing in ways that are making me feel very uncomfortable.

MY ADVICE TO YOU…

            I’m no health expert, by any means, but it is CRUCIAL that you take care of your body. It is not about looking good for other people, or because that is what the media tells you.

It is literally because your body NEEDS it, and it craves it. My body was giving me all of the warning signs and I didn’t even notice until I landed myself in the hospital. Be aware of what your body is telling you, and never excuse what you may be feeling as something miniscule or “not there.” Never try to diagnose yourself with something before getting a second opinion from a health professional.

As a person who now HAS to take care of her body, simply because I am now at risk for things even more detrimental to my health than diabetes, I encourage everyone to be kind to theirs. I have learned that consciously deciding to eat healthy and physically exercise my body has helped me, physically and emotionally. Now I have no other choice. But I guess that’s a good thing.

Love, Emilie