Wednesday, March 13, 2019

Cheers to Ten Years

June 2009
March 13th 2009, I was told that I have type 1 diabetes.  Now, March 13th 2019, ten years later, I sit here and marvel at the journey that my diabetes has taken me on.   Little did I know what living with type 1 diabetes meant at the time of diagnosis.

While ten years is quite the span in time, I can still picture my eighteen (almost nineteen year old self) in the waiting room. Waiting without any idea what was going on, crying as the doctor told me I had diabetes and then walked away and closed the door.  I remember trying to get a cell phone signal in the room so that I could text someone, anyone.   I recall the quick drive home after they told me get a bag together because I'd be staying at the hospital for a couple nights, something I'd never done before.  I remember the look of panic on my mom's face as she gathered my things together and then drove me to the Brantford General Hospital.

I remember a question I asked the first doctor I saw at the hospital.  I asked, "Will I still be able to have a family?"   it wasn't something that I was actively planning at the time, having to still complete College and University, but it was an important question for me to ask.  I remember him smiling and telling me, "of course." Probably wondering why out of all the things to ask during time of diagnosis, I decided to ask that.

Ten years later, and I am smiling thinking, 'of course' as my husband and I get ready to add a beautiful baby to our family in August.


Baby O'Connell Arrives in August! 
I remember sitting in the hospital bed, as the patient beside me went on about all that Popeye's Chicken had on their menu, laughing at how excited they sounded, "they've got spicy chicken, spicy wings, even spicy fries..."   I remember that wonderful nurse who let me use the computers to look up a group called Connected in Motion, which I believe full heartedly immediately paved a beautiful, growing, supportive path for my journey.

After that, I remember the doctor, the same one who answered my question about having a family, asking me why I kept smiling, as if I should be in sorrow, or mourning my forever broken pancreas. I remember shrugging my shoulders and not really knowing, but now looking back realize that when in doubt, smiling can take some of the pain away.

The fear I recall was when I was taken up to a room, them not letting me get out of the bed as they pushed me through the hallways and up the elevator.  Myself thinking, I can still walk, you know? 

I was nervous to be left alone as they asked the visitors give me time to rest, even though I felt that I would be much more restless without them.  I was most nervous to not know who laid behind the curtain of my shared room, as I saw some individuals in the waiting room that I imagined were beside me.  I wasn't scared about my diabetes, or what life with diabetes meant, which seems to be the way I have combatted my diabetes, without fear, just courage.

Mount Kilimanjaro 2013 
That day, although ten years ago now, still stays crisp in my mind, like it happened yesterday. But, remembering all that came in between reminds me just how long ago it was.  I have been incredibly privileged and lucky in my journey thus far. I have met so many incredible friends from around the world, and have been granted opportunities that I would have never imagined myself doing.  While diabetes has come with tears, anger and frustration along the way, knowing all that this journey has given me, it's hard to imagine without it.

I want to thank all of the amazing supportive people in my life, some that may have come and gone, but most definitely played an important part along the way.  My diabetes journey has been made successful because of all of your understanding and support.   Thank you for the people that have read this blog for nearly ten years and have continued to follow along with my journey.

I love you all.

Cheers to Ten Years,

Kayla


Thursday, November 1, 2018

#diabetes

A unicorn frappuccino, a Halloween candy haul, or a decadent chocolate cake is not #diabetes.

#diabetes is finger pokes interrupting your normal routine, delaying your errands, intercepting your plans.

#diabetes is the crushed juice boxes on the bedside table, glucose tab dust on your fingertips and disrupted sleep patterns.

#diabetes is the 2, 3, 4, 5 a.m washroom visits, as your body tries to flush the sugar and the countless refills of your water jug as you urgently wait to see a lower number flash on the screen.

#diabetes is hard.

#diabetes is never knowing if you're going to be okay. Never knowing when diabetes will take you over, rather than you taking control of it.

#diabetes is a life sentence, given to you with no parole.

#diabetes is facing the repercussions for every single bite that goes into your hungry mouth, constantly paying up for the temporary enjoyment of being 'normal'.

#diabetes is injecting needles into your flesh, like a pin cushion with no relent. Repeatedly giving insulin or drawing blood.

#diabetes is a lot of things. A lot of things that many of us know all to well, but diabetes it now what is on your plate, cup, or bowl.



This November is Diabetes Awareness Month, and with that comes an opportunity to educate and spread awareness about Type 1 Diabetes which is a disease that affects more than 300,000 Canadians.   

Monday, September 24, 2018

He's Type 1

"He's type 1" 

Those words echo through my mind.  Last week I received the text that one of my best friend's child was diagnosed with type 1 diabetes. Never in a millions years would I imagine myself bantering back and forth with them about the words and topics that have become so normal to me, and now to them. 

 Bolus, Basal, Insulin, Blood Sugars, a1C.   

I felt my heart sink as the text came in telling me what the results of the blood test said.  While they told me his symptoms, I couldn't be sure that diabetes was going to be the diagnosis. I hoped that it wouldn't be. I hoped that it was something temporary, a cold, the flu, not type 1 diabetes - please not this time.  But, as my phone vibrated, and I read the text aloud, tears fell down my cheeks as I thought to myself, "Damn You Diabetes..." 

It has been almost ten years since my diagnosis. Ten years of blood sugar checks, insulin doses, a1C counts and juice boxes.  Diabetes has become second nature for me, while never quite running smoothly in the background, it is what my life has been made up around.   When they told me the news, that they were now entering that world, my mind quickly flashed through all the journeys diabetes was going to take them on. All the obstacles that they will now have to face and the heartache and frustrations that comes with managing a disease that never quite sits quietly in the background. 

While I know many, many children, teens and adults alike living with type 1 diabetes, anytime I hear of a new diagnosis the same feeling of anger ignites in me.  Why? Why them? Remembering the last time I saw my friend's full-of-energy son, bouncing around on a trampoline as us adults enjoyed a BBQ and laughter.  Helping him with his dinner, scooping potatoes until he said 'stop' and filling him a glass of water.  Remembering all of these moments that seemed so normal, but meanwhile diabetes was slowly working its way into his body, causing the excessive thirst, bathroom visits and belly aches.  

While I'd do anything to take the disease and burden of diabetes away, instead I have to know that there is hope in technology and support.  In the exact ways that I found strength and courage, I only hope he can find those too.


 Kayla 
Gift I made for their son.
Gift that I made for their son.

Monday, August 27, 2018

I Bolused & Carried On

Okay, so it's been three months since we said I Do, but I was awaiting an important photo for this very blog, because like any other time, diabetes tags along for all of the best moments in your life - no matter what you do to try and keep it on the back burner.

On May 22nd, we got married in Mexico with our close family and friends in the sand right in front of the ocean. It was a beautiful day, seriously, we lucked out because as we were getting ready, it was a torrential downpour. However, the sun parted just before we were set to marry and the rest of the night was perfect.

I had issues with my dress leading up to departure, as the seamstress was not so great. I had planned on sorting out where my insulin pump was going to go on my dress (not being a hard thing to do since it was a giant ball gown dress) but I simply ran out of time and mind space to even think about it.  It wasn't until the day before that I thought, "Oh my gosh I need some kind of strap for this thing!"  I wanted to wear my pump because I didn't want to have to deal with injections or high blood sugars.  Thankfully, my medtronic rep lives close by and he gave me ALL of the straps, belts, bags, you name it, to try with my dress.

Our wedding was near the end of our trip, so it let all our nervousness float away through the week as we spent a wonderful amount of time in the pool with our friends and family.  Let me tell you, having a waterproof pump at a resort is fantastic!  My blood sugars were decent throughout the trip because I always could keep my pump on, even if my entire day was spent at the swim up bar.

Now to the wedding day!  I woke up in the morning, not feeling nervous at all. I felt very calm and was trying very hard to soak up every second of that day.  I realized my pump was almost out of insulin and not wanting to have to worry about it, I decided to do a quick site change before the day began.  I've changed my pump site thousands of times, not a big deal.

But, there was a big deal, because within all the excitement I missed a simple step.


Let's fast forward to getting ready - oh it was so fun!  It felt like a rush as we did our makeup, hair, rushed around, took photos, and prayed the rain would stop.  Our coordinator came knocking on our door that it was time go, and my mom reminded me, "shouldn't you check your blood sugar before we go?" 

Oh yes!  Not only am I getting married in 10 minutes, I also STILL have diabetes.


K.S Photography


I scanned, I pricked, and to my surprise my blood sugar was insane.  INSANE.  How could this be?  I know adrenaline does some damage, but this bad?  But, it was time to go, so I grabbed my remote meter, and dialed up insulin.   But, it wouldn't connect.

Now I was getting frustrated.  This is truly when you realize diabetes isn't on your side.   I was going to have to get my insulin pump, which was lost in tulle. But, there was no way I could go without correcting.  So, there I was fishing for my insulin pump to correct my blood sugars just before walking down the isle.  What did I realize when I finally found my pump?  I had forgot to finish priming it.  The pump wasn't even giving me insulin all morning and afternoon.

While of course everyone was in shock about this, I knew it was just one of those moments I had to roll with.  I felt good (probably adrenaline) and I wasn't going to let it ruin the day.  I bolused and carried on to begin my next chapter (which unfortunately still included diabetes!)

Kayla

Friday, August 3, 2018

Four Things That We Depend On

There are many things that we depend on as people with type 1 diabetes. As much as we like to claim independence, there is quite a bit that goes on behind the scenes, that we count on to keep us going:


1. Candy, Sugar, Juice Boxes

Believe it or not, people with diabetes need these things. We need something to bring us up when our blood sugars plummet.  Most people confuse sugar consumption with diabetes in general, and believe
that we have had to give it all up, and if we touch it, our 'diabetes' gets worse. However, many of times, candy as saved my life.


2. Prescriptions

This is something many people depend on. However, if we do not have insulin, the consequences are grave.  There have been a few times I've gone to the pharmacy, only to find out they didn't have insulin in stock, and their nonchalant attitude is enough to send a T1D across the counter in rage. Same goes for a prescription that is not properly cared for.  I once went into a pharmacy only to to 
notice, my insulin sitting on the counter - for who knows how long! 


3. Technology 

It's not just our phones that we count on, but our insulin pumps, blood sugar meters, CGMs and sensors. We count on a ton of technology to keep us healthy and going.  It was absolutely great when it works, but when it fails us, we are left to the grips of a customer service line and a waiting game with the mailman.


4.  Proper Diabetes Education 

We are all smart, but when it comes to learning about diabetes it takes both lived experience and education from our health care providers. The day you're diagnosed begins the day of a lifetime course on how to manage diabetes.  It's always changing but, it is important to make sure we are equipped with proper support from both health care providers and others living with diabetes.



Kayla

Monday, July 30, 2018

Pre-Bolusing

As a reminder, I am not a medical professional - so the topic today is about bolusing and I want to state that, chat with a medical professional before you bring anything I blog about home.

I have been really trying to do well with my diabetes. By doing well, it just means that I have been trying to dedicate more time to managing diabetes and really sit with my numbers and figure out how I can achieve better numbers.  As I already stated, Mike and I would like to try for a family in the next year or so, and to do that, obviously you want to have good numbers and you just generally want to feel good. Once you get a feeling of stability with blood sugars (even if it just for a entire afternoon) you gain a little confidence that you'll be able to manage diabetes, usually that is if you're willing to dedicate 80% of your focus and brain power and 20% to everything else in your life.  It's not balanced, and likely cannot be.

What I have found that has been super helpful is a pre-bolusing.  I am not good at math or science or anything related to those topics, so by some magic, I have just made up my own way of pre-bolusing with timing and (most of the time) been successful with it.   I won't be discussing what that magic is, because I believe each of us need something different, and what works for me, likely isn't going to work for you, mainly because I just make it up as I go.

Pre-bolusing isn't something new.  People with diabetes have figured this out way before I have, and have done it with actual science and math and not luck.  You can find many articles by googling "pre-bolusing" There is no shortage of finding information and reading people's experiences on this topic. I am really just adding another paper to the pile that doesn't give any equations, or really anything that is going to be life-changing. However, for me really thinking about diabetes has been my own life-changer.

Pre-bolusing to me, is consciously thinking about what I am putting into my body, what I am doing with my body and trying to assume what my blood sugars will do with all of that information.  It is most definitely a guessing game for me, and trying to predict the future. However, it has been fairly successful for me - which means I am either in tune with my body, or I am a legit, fortune teller.  We can't be sure.

Kayla

Friday, July 27, 2018

I wish I knew

There is one major thing I wish I knew when I was first diagnosed.  I wish I knew that blood sugars do not always reflect the carbs you ate, the activity you did, the good vibes you put out nor do they equate to how good or bad you are at managing diabetes.

Obviously getting diagnosed with diabetes was a life changing moment, and like any life changing moments, your mind captures those memories like a photo album in your mind.  When I think about my first days of diagnosis, it takes me back to my parent's house,  I see myself sitting on the couch in the family room. Not facing forward, but facing backwards towards my mom who was often in the kitchen, I don't recall the exact conversations but I do find myself in that moment, on that couch, looking at my mother.

While I don't remember exact conversations that took place, I do remember a feeling.  A feeling that I was somehow failing at diabetes.  I never dealt with a disease before. I had headaches, belly aches, even a kidney infection once, but never did I have a disease I had to manage on my own.   I grew up taking Tums to calm my belly and Tylenol to heal my head but, I was now working with a much different monster.

This monster, diabetes, came with medicine, like the other ailments I had growing up, but instead of taking what was prescribed and letting the magic of medicine do its work, I was now in charge of the dosages. Me, eighteen, trying to figure out what I needed to keep my blood sugars in target.  Calculating carbs and correcting for my mistakes. I had this misconception that once I was diagnosed and on insulin, I was going to fix the broken part of me, and move on.

Why isn't this insulin working? was the feeling I had.

Of course it was working, there was nothing wrong with the insulin, it was not too hot, nor cloudy or expired, it was diabetes that wasn't working. It was the misconception that I had been telling myself that I was doing something wrong, I must be. My blood sugars are scattered, staggering high and low, never really running a straight line. I was taking my medicine, I was following directions - I was doing something wrong.

But, I wasn't. I wasn't doing anything wrong. I wasn't being good nor bad.  This wasn't like healing a headache or upset stomach, this wasn't about getting better and moving on. It was a harsh introduction to a disease that doesn't always cooperate. It was an introduction to myself as my own doctor, having to really learn about my body, and listen closely to myself, pay attention to patterns, and most importantly accept the highs and lows as they come.

There wasn't going to be a straight line that lasted forever.  It was going to be a ride. I wish I knew this from day one.

Kayla