Our T1 Youth

Roommates dressed up for World Diabetes Day 2013

In the past four years I have met some pretty awesome people, but more so, some really great youth living with type 1 diabetes.  I find it fascinating as I see youth taking charge, believing in volunteerism, spreading messages and fully engaged in awareness and education. When I was their ages, I was not thinking of ways to raise money to make a difference nor was I going out of my way to teach others about a particular cause or issue. Diabetes has given these youth an opportunity to become passionate as much as diabetes is a burden in their lives.

I've grown incredibly excited for what the future has to offer for type 1 diabetic youth.  As I meet more and more youth living with type 1 I realize that they have so much potential in truly making a difference in the diabetes community. It is a breath of fresh air knowing that they want to make change.  I don't know what it is like living with diabetes as a child nor a teen.  I was diagnosed not long before my 19th birthday, and I had finished high school already.

Even though what I go through on a daily basis with site changes, carb counting and finger poking is similar to what children and teens experience, the disease affects people in many different ways.  I cannot imagine being a youth with type 1 diabetes, but most of them could not imagine what their future will look like and I am so excited to be the one to show them that it will be just like anyone else's future, maybe even brighter.

I really think that there are some strong leaders arising in the type 1 diabetes community, I see

potential and honestly, anything I can do to make them succeed, I will do.  I am so proud to be apart of such an uplifting, tight community.

Isn't On Your Mind

Aren't those moments great, when you forget you have diabetes.  I mean, it's not like if someone were to ask you if you had diabetes you would draw a blank, but those moments when the last thing on your mind is diabetes. You are so excited, living in the moment, pump is full of insulin, site feels non-existant, fingers haven't been poke in a couple hours and for a moment diabetes isn't on your mind - the moment is instead.

The pizzas we made last night - yes I remembered to bolus!

These moments are rare, at least for me. My newsfeed is usually bombarded by diabetes related posts and if not there is at least one ad on the side of my Facebook related to diabetes. I either am thinking about how high my blood sugar is or how much longer I have until I have no insulin left. Although most of this is unconscious thought, I can't help but always put myself in situations that remind me that I live with diabetes.

Yesterday for a bit, I  was able to truly feel non-diabetic. I don't know why but I knew that my pump was full, battery was full and that I was running great blood sugars all day.  I had went to the gym in the morning and since I had only two eggs for breakfast, I took my pump off and let my body naturally lower my blood sugar knowing that I hadn't ate many carbs at all.  Coming home I put my pump back on and checked every now and then but since I was feeling great I wasn't worrying or thinking about my diabetes.

I spent the afternoon at Vince's and since there isn't much of an internet connection out there, I left my phone in my bag and decided to ignore it. I wasn't reminded of my diabetes nor anyone else's and I truly enjoyed my time feeling. I get that I still had my insulin pump on and I did have to check before dinner, but I just let diabetes slip my mind for a part of the day and it felt great.

Kayla

Syringing

The odd time I forget my insulin pump. Usually it is tucked in the pocket of my house coat or left on my bed in a pile of clothes that I tossed around while trying to find something to wear.  But, usually if I do forget it at home, I have only ran to Wal-Mart or to class and will be back within the hour. However, today when I left London and unknowingly my insulin pump - before I noticed I was in Brantford, 1.5 hours away from my pump.

I had stopped into the bank to grab some cash and when I came out I felt that my site was stuck on my pants.  It was uncomfortable so when I got into my car I made myself a little more comfortable and unhooked my pants from my site (kind of a weird explanation but I don't know of another way to put it.)  After realizing there was no tubing attached to the site my first thought was that it unhooked from my site.  I felt around my body to see where my pump was. Usually I tuck it in the side of my bra or in the front, but also in my front pockets (I didn't have pockets, so I knew it had to be in my bra somewhere.)  But, nope. It was not anywhere to be found.

I didn't really freak out, but I begged that my blood sugar was good so that I didn't have to go to my parents house and get insulin before my hair appointment.  I checked and I was 4.8 - which was weird because my two previous blood sugar checks at home (while I had a pump on) was 4.8. I instantly thought that this couldn't be possible, so I checked again. It was 4.9. I knew it must be true. I was cured. Or at least for a couple hours.

I headed to my appointment. It was at 3:30 by this time I had been without a pump for 1.5 hours. I checked again just before my hairdresser took me to his station.  It was 4.9.  So strange. It was being stable for me, which was awesome. I felt O.K without insulin, but was hoping that it wasn't going to sky rocket mid hair appointment.  I knew my mom would drive over insulin and a syringe if I needed it. I checked about half way through the appointment and it was 4.9, honestly, I thought something was up. I happened to have a second meter in my bag (because I use it as a USB stick) and it read as 5.0.  So, once again. Cured.

When I got to my parents house after my hair appointment now about 5 and a half hours without insulin. I had some dinner, perogies and sausage and decided I would check after eating and take insulin after that. I wasn't really sure if I should have taken insulin before hand, but since it was such an odd day with super low numbers I wanted to make sure I was bolusing or syringing for the right amount. Plus, I had to drive back to London because I have an early class Wednesday mornings.

After eating and waiting about 15 minutes, my blood sugar was 8.2.  I filled up my syringe and gave myself the amount of units I felt comfortable taking.  It was such an odd day, but honestly I felt really free in having no insulin pump.  I love my insulin pump, but I must admit that sometimes it can be irritating.  The tubing, the vibrating, the finding-a-place-to-put-it.   It makes me wonder if I deserve a bit of a pump break.  

I think I need a few days to think about it. But, not having an insulin pump all day was convincing.

Kayla

I am Lucky

Finding a person who will understand your diabetes can be hard.  Often times type 1 diabetics are getting asked questions that we have to swallow down our frustration and answer like, 'Can you eat that?' or, 'Will you grow out of it?'  There are just people out there that don't get, don't want to get it or just aren't willing to deal with diabetes and I read messages from people all the time that run into this issue.  My first response is, 'those people aren't worth it!' and it's true but it is hard to take that in because we know as people living with type 1 diabetes, that it isn't going to go away and if that one person (who is once again NOT WORTH IT!) isn't accepting your diabetes, who will.  The answer is a lot of people.

I have had a few younger teens message me or talk to me about friends not accepting their diabetes.  I think for the most part, people don't understand type 1 diabetes and fear it.  They don't want to see needles, see blood or have to worry about what to do when you go low.  I get it. We come with a lot of instructions, but for the most part we take care of ourselves pretty well, and if you don't like seeing the tiny drop of blood that swells from our finger tips, look away.  

I am lucky. I am lucky because my diabetes made me and my friends closer.  It also truly has given them an idea of the importance of living life to the fullest because they know that I wasn't expecting anything health wise to go wrong in my late teens - but it did and it could happen to anyone at anytime. I am also lucky because I found a man that understands and buys me candy, because he knows I can eat it.  He is so fascinated by diabetes and hasn't stopped wanting to learn about it.  He makes me so proud when he uses words like, bolus or endocrinologist.  I feel like he truly cares about my diabetes.

I hope that for the most part people living with diabetes have had someone close to them really engage in their diabetes and want to know more. It is such an important part of personal acceptance and motivation. I am fortunate to live with another type 1 diabetic this year and our three other roommates are always engaging in questions about diabetes and want to truly learn.

Kayla 

Cake or No Cake

Often on my Facebook newsfeed, posts from diabetes related pages pop up. Usually, I don't respond to them unless I have some good input, and usually the posts that seem to pop up the most are questions posted by parents of type 1 diabetic children.   However, just now a question popped up from a diabetes page that said something along the lines of, 'it's my child's birthday tomorrow, should I have cake or no cake?' At first I wanted to write something like, 'why is this even a question?' but that isn't something I'd actually say to someone in person (which I think is important to think about before you post your opinion online)  So I decided to really think about it.

Old Photo, but hey! I am eating cake.

It makes me wonder how many children with diabetes are being neglected their birthday cake? There has to be parents that do not ask these questions online before acting on them.  So, I can only imagine that there are parents not allowing their children to ever eat their own birthday cake, sleepover at someone's house, or trick or treat.   It's hard for me to put myself in the shoes of caregivers, but I am type 1 and do take care of myself.

Now, I did notice that most of the people replying were responded with, 'CAKE!' which is incredibly reassuring because I instantly put myself in the shoes of a type 1 diabetic child, knowing that at birthday parties there is cake, but noticing that at YOUR birthday party, there isn't.   I feel as though that would give that child a notion that having diabetes means being different from everyone else.

We are incredibly lucky to have access to insulin, and even more technology including CGM's and insulin pumps. Raising a child with type 1 diabetes is not a cake walk - totally understandable, but I think as a type 1 diabetic myself, who sometimes can discourage herself, it can be truly hard to feel 'normal' in a world full of non-diabetics.   So, something as simple as a cupcake at a birthday party, shouldn't be the reminder that you're not like everyone else.

Kayla

Diabetes Haunts

Every now and then I have those moments where I begin to wonder why I was given diabetes. Of course there are no answers that would satisfy me, in fact I don't believe there really are any answers at all.  Only the answers I give myself back when I question myself, to make myself feel better about my situation. I was given diabetes, I was given diabetes for some strange reason, and here I am really bathing in it, trying to see what more can come with my diagnosis, new friends, new experiences, career possibilities, a voice.

The other night I was lying in bed. My insulin pump, which I let freely roam in my bed with me, keeping us connected by the 23 inch tubing, was driving me insane. I was tossing back and forth and each time it twisted around me, pulling my site, not enough to rip it out but enough to feel the pinch.  I didn't want to get out of bed to grab the clip, still I knew had I clipped it to my pajama bottoms I would be shuffling it around, as it is very uncomfortable to  lay on.  My mind slowly began to wander, wander to the place that questions diabetes, that hates diabetes.

I thought about how I managed to not have diabetes for almost 19 years of my life, and how I wish it just never happened, whatever triggered it etc. I hate that I have to worry about everything from my feet not healing properly, to my eyes not being able to see no longer. Why does diabetes haunt us so much? Why do I have to worry about the risk during pregnancy being diabetic, can I get pregnant? Why do I have to relate every little headache, pain, frustration to diabetes - can it be something else?   Why is diabetes haunting infants, children, teens, young adults, and adults?

I shook the thought out of my  head. For there is nothing that I can do about the fact that I have diabetes. Whether or not I like it, I have to deal with it.  It is just incredibly frustrating knowing that it is more than just sugar and insulin. So much more.

Two Strangers Meet

After speaking to a mother of a recently diagnosed daughter I couldn't help but flash back to my diagnosis.  Eighteen years old, not knowing what type 1 diabetes was, I was given a life sentence with no chance of parole. However, it wasn't until I met another type 1 diabetic that I realized that my diagnosis story isn't unique. While some of us have a few cool twists to our diabetes diagnosis, most of us suffered weight loss, poor vision, constant urination or extreme thirst.   I remember meeting my first type 1 diabetic at a cafe in Brantford, Ontario.  I had never 'met' a type 1 diabetic before, or at least never had known another type 1 diabetic.

Photo from a couple years ago.

It is the oddest feeling when two strangers meet, but seem to have so much in common. I remember her saying things like, "I couldn't hold it, I had to go when I had to go..." images flashed in my head of me rushing to the bathroom after chugging a bottle of water, or being in mid conversation with a friend, attempting to hold it in, but having to awkwardly exit the conversation to use the bathroom. It was such a horrible feeling, but to know that she went through the exact same thing was such a strange and powerful feeling.

I think it was important for me to meet a type 1 diabetic that was older than me, someone who had been through the ropes of diabetes for a few years and knew what to tell me and what not to tell me. I went home that day knowing that I could handle diabetes, and that living with type 1 diabetes although a lifetime of a disease wasn't going to take over my life in a negative way.  She inspired me to seek out other ways of dealing with diabetes and encouraged me to bring my writings (something I had already started on Facebook) to life on a blog.

For her encouragement and positivity, yet honesty about life with type 1 diabetes, I believe has formed the person I am today with type 1 diabetes.

Special thanks to that type 1 diabetic that met me that day, Chloe Vance, founder of Connected in Motion.

Kayla