#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.   

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.

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

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

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

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

Water

Darien Lake - Pump Clipped On & Ready to Swim!

Alright, so I am sure the people on injections and people who once wore Animas insulin pumps will feel like this blog post is old news; however, since Medtronic made the leap to waterproof pumps back in April 2017 (in Canada) I must say, anything to do with water has made managing diabetes and enjoying water much easier.

Previous to wearing a waterproof pump, going to a waterpark meant throwing my insulin pump in a locker or bag and praying that it wasn't stolen.  It meant being without insulin for a period of time and likely dealing with rising blood sugars long after due to not
getting insulin for an extended period of time.   I almost dreaded going swimming because I knew I wouldn't be getting insulin during that time, or would have to force myself out to hook back up to the pump.

Now that Medtronic has a waterproof pump in Canada (630G)  I can wear my pump into the water without any worries about missing insulin or dealing with a missing (stolen) insulin pump. The first time I wore my pump into the water was when I went to a conference in Toronto and stayed at a hotel with a pool. Since it wasn't quite summer, I hadn't actually tested out the waterproof aspect. I figured I might as well try before we headed to Mexico.   It literally felt like freedom to just walk into the water without worry, just like a normal human being, except with my pancreas clinging onto the bottom of my bathing-suit.

Mexico - Totally wearing my pump!

Fast forward to Mexico, I wore my pump in the swim up bar for hours on end.  I was able to drink, eat, and float around without having to get out of the water to hook back up, or make sure my pump was still in my bag. It was on me the entire time, able to give myself insulin and also give people the time, because no one wears watches in the pool nor brings their phone in.  This was making diabetes and water possible.

Fast forward even more to the past weekend we spent at Darien Lake, I was now going to wear my insulin pump on water ride, lazy rivers, wave pools, the options were endless.  I didn't have to pay a exuberant amount of money to lock up my pancreas, I didn't have to stress about someone taking it, I had no worries about managing my diabetes and water. I was good! I had my pump, I had my sensor, I had everything I needed on me in order to enjoy life in the water.



Kayla

#dXDublin: Diabetes Bloggers

A couple weeks ago, I was lucky enough to visit the beautiful country of Ireland.  I joked that my invite came with my marriage to an O'Connell, but really, it came from Abbott Diabetes Care.   I headed to Ireland for the #dXdublin Conference which welcomed thirty influencers from Belgium, Brazil, Canada, Denmark, France, Germany, Greece, Ireland, Italy, Netherlands, Poland, Spain, Sweden and the UK.

The weekend kicked off with a tour of the beautiful city of Dublin followed by a welcome reception at the Marker Hotel.  The reception took place on the roof top, which overlooked the harbour - what a beautiful way to kick off a weekend with thirty amazing bloggers, you-tubers and social media gurus. This gave us all an opportunity to share our diabetes stories - all similar, yet unique.  We shared our social media channels, and some of us were so excited to meet the face behind the blogs and pages that we love.

The next day was full of excitement as we knew we would be heading to Google European Headquarters in the morning. We all met in the lobby and walked over to the building for some insight sessions on video blogging, and analytics. All topics that we all were able to take and apply to the work we do as diabetes influencers. Following our morning at Google we headed to a working farm called Airfield Estate.  We enjoyed a fresh healthy lunch there, followed by a walking tour of the grounds and then right into two speakers who shared their experiences with advocacy and social media.

There was plenty of time to get to know the influencers around us and here what the struggles, barriers and triumphs are in each country.  It was important to recognize that while we all live with type 1 diabetes, we are all facing unique obstacles due to the regions in which we are living. While some of us have access to free supplies, others are scrambling to find the supplies.  We all empathically shared our stories and listened to one another - bringing the stories back to our own communities to share.

By the end of Saturday, it was like we all knew one another from the start. Having diabetes was now normal, being surrounded by Libres on arms, pumps on waistbands and a constant buzz of diabetes topics floating across the tables.

We were surprised to learn that Sunday we would be touring the factory in which the Libre is assembled.   Having the opportunity to see the production was absolutely amazing and truly makes you appreciate the amount of care and thought that goes into the product in which you wear.  This was an opportunity of a lifetime as not many people are given the chance to see the factory.

Wrapping up the weekend was hard, living many miles away from one another, we knew the goodbyes would be difficult. But, to no surprise, since we are creatures of the online world, we found one another online, gained new followers, and shared our photos and memories from the weekend.

Ever since trying the Libre, I have constantly given the product credit to my lowered a1c and overall feeling of wellness.  Diabetes is hard, and any tools that take some of the burden off myself, and makes me feel at peace with living with the disease, are welcome.  I've welcomed the Freestyle Libre into my life without hesitation, and I'm happy that Abbott could let me into theirs!

Disclaimer:  Abbott Diabetes Care paid for my transportation, accommodations and meal expenses for this conference. All thoughts and opinions are my own. 

Got Milk?

After nine years of blogging it has come to blogging about milk, but hey, it does relate to my diabetes!

I have always enjoyed drinking milk. It was a staple in our home growing up, a glass of milk in the morning and with dinner and also anytime I enjoyed something sweet - you bet I was pouring myself a glass of cold milk.   Just before I was diagnosed, before we had any clue what was happening to my body, I would crave milk to the point I would stand with the fridge doors wide open, pouring myself copious amounts of milk. Refilling without shutting the fridge doors, glass by glass until the bag was empty (yes, in Canada we have bags of milk!)  I would drink so much milk in fact, I would get the absolute worst stomach aches, complaining to my mom that I could hear the swishing around of liquids in my belly, groaning that while I felt completely flooded with milk, the thirst was still there (enter diabetes diagnosis.) 

I shutter to think what my blood sugars were climbing to when I was drinking litres upon litres of milk within hours.  I truly think this was one of the first warning signs that made my mom insist I get tested for diabetes because even the greatest of milk drinkers - don't finish two bags of milk in a day - or at least I hope not.  I was drinking milk like I was a growing teenage boy when in reality, I was withering away, so sick with type 1 diabetes and so very thirsty.

After diagnosis, my love for milk continued despite my love-hate relationship.  However, now I was able to see the affects milk had on my blood sugars.  When I was truly paying attention to that pattern - I'd see my blood sugars rise as soon as I took a sip.   Thankfully, as a student at the time, I rarely bought milk and if I did, it was small amounts.    Fast forward to now being in home where Mike and I both drink milk in a glass and with our coffee - we always have bags of milk in the fridge.

Are you bored of my milk story yet? 

Anyways, fast forward to almost ten years after my not-so-healthy relationship with milk.  Knowing now, if I want a glass, I have to pre-bolus.   But, also knowing that milk has been one of the best ways to bring my sugar up and stabilize it.  Lately, I have been very conscious of my blood sugars (thanks to Freestyle Libre & wanting to start a family!) so most of the day I have been riding the line between 6 mmol/L & 4 mmol/L This has caused some lows in the night, where juice just isn't doing its job.  It is almost like the juice becomes water and I am left waking myself up to scramble for more.  One can only drink so many juice boxes in the night - just saying.  I have realized, much like a baby, if I want to stabilize my blood sugars for a good nights rest, milk is the answer!

Kayla

How I Pack

I recently had someone ask me what I do when I travel with diabetes.  I have been travelling for a long time now with diabetes to the point where I could probably pack my bags in my sleep.   I thought it might be helpful to give a quick overview of what I am packing when I head out on a trip and what I do whenever I am about the embark to somewhere new - well basically to somewhere that doesn't have my over flowing diabetes drawers and local pharmacy near by.

The first thing is carrying my supplies. Diabetes supplies make up about 25% of my checked luggage (if I am taking a plane) and about 50% of my carry-on luggage. Depending on where I am going which translates to - if I think I would be in absolute sh*t if I ran out of diabetes supplies. Basically, that will be the deciding factor on how much I decide to divide up my supplies between carry-on vs. checked.

Diabetes conference is on the low scale, middle of nowhere trip where english is not the first language and no one else will have diabetes in my travel group - you bet I am bringing a good chunk of supplies in my carry-on.

I carry most of my diabetes supplies in one big zippered case that has little compartments. This helps me keep it organized and also helps me check the inventory of the bag. Basically, this bag is always packed and I just refill after trips. I travel quite often so it works out well.

Travel Bag 

When I travel I almost always bring a loaner pump from Medtronic.  The loaner pump is just a pump you loan from Medtronic (that was probably obvious!) and you just return it upon coming back from your trip. It is more of a safety blanket than anything. This is a free program, but don't lose it because then it becomes not-so-free.  Keep it in a safe when you arrive to your location or somewhere you see fit - basically do not keep it on the bed side table.

Insulin, oh insulin.  This was the question I got in regards to travelling with diabetes.  Where do I keep my insulin and how to I keep it cool.  I want to take a hot second to remind you that this is what I do, and whatever you do - make sure you're comfortable with that and maybe ask a health professional if you're not sure/don't trust me.  Personally, when I first started travelling I was freaked out about the idea of having to carry medication that needed to keep cool. It was like having to take care of an egg on vacation with specific rules not to break its shell.  I was nervous that it wouldn't stay cool, it would break, it would get lost, or someone would steal it.

That fear has drifted away, whether for the good, bad or possibly ugly. I have become very relaxed with carrying insulin and honestly each trip is different. Sometimes I keep it in a little bag with an ice pack, sometimes I bring it in a Frio Bag and sometimes I just let it hang out in my backpack for the entire trip (this is what I recently did in Ireland).  The good news about this is that every method has worked fine. I have been perfectly okay using the insulin, and nothing bad has happened - fingers crossed.

When it comes down to it, travelling with diabetes could look different for everyone.  I am sure there are some of us that fear the worst and pack for the apocalypse and then there are others that pack like a teenager packs their lunch.   There isn't a right or wrong, or best or worst. There is what works for the individual traveller.

Kayla

You're Doing a Good Job

The way people took care of their diabetes before me, is not the same way in which we take care of our diabetes now.  This is good, this shows us progressing in a direction that could one day make living with diabetes much easier or at least, less hands on.   It's not different than the inventions of microwaves to make cooking faster and more efficient or the invention of cordless telephones that allow you the freedom to roam as you gossip.   As time moves forward we can only hope that advancements in medical technology gets better and better.

For me, I've wore an insulin pump for the past eight years.  Wearing an insulin pump for me has been helpful in managing my diabetes without having to bring the extra supplies, take time to give myself needles, the list goes on.  It has given me freedom and choice.  I've now been wearing the Freestyle Libre for a few months and honestly have been so excited for its possibilities.  Having not poked my finger in awhile, I feel the buzz of change coming for those that manage their diabetes.  No finger pokes? My finger tips won't be so rough, callused and sore.

Like any technology there also comes so much information. Information is faster transmitted and information at your fingertips.  This is helpful, so, so helpful in keeping some level of awareness of what is happening.  With finger pokes I would feel the stress of making sure I tested enough, or remembering to make sure I had enough test strips before heading out the door.  But, now everything I need is attached to my body (minus a couple things). I am almost always aware of what my blood sugar is or is about to do.

There is another part of the technology that also weighs heavy on my mind.  The shame or guilt that comes with blood sugars rising or falling. What did I eat? Why is this happening?   I have so much information and have all the tools and yet nothing can take away the self-inflicted guilt that comes with blood sugar numbers.

I think about my future, wanting to be a mom one day, and knowing that taking care of myself now is important for not only my "today" but also for my "tomorrow."   I embrace those tools that are acting as my guides as I balance along the tight rope, trying not to leap or stumble.  I also remind myself that along with those amazing tools, comes some work on my end of things, something that technology isn't capable of helping, which is my mind and ability to say to myself, "you're doing a good job." 

Camp

It wasn't until last year that I actually started to enjoy camping.  To be honest, I had never really tried it.   My first time sleeping in a tent was on the trails of Kilimanjaro which was probably the most extra way of trying tenting for the first time.  Growing up, we would 'camp' which meant renting a trailer at Darien Lake, so I am not sure if that classifies as camping or not.

Since trying camping last year, I have grown quite interested, which makes my husband happy because he owned a tent for years and I refused to sleep in it.  Now, I happily help him set up the tent and cook on the camp fire. While camping is relaxing and a great way to get away from our busy lives, diabetes still comes for the campout.

The top concerns are always keeping my insulin cool, making sure I have low supplies near by, keeping control of my blood sugars and making sure I have a bathroom close enough.

We have always camped with electricity near by and recently acquired a plug-in cooler which means I can keep my insulin cool if it happens to be warm.  Often enough, I can find shade and keep my insulin away from the heat.    I worry that if my insulin were to get too warm, I wouldn't be able to use it.  

The second concern is the snacks for middle of the night lows.   Since we don't want creatures visiting us in the night we often keep our food in the car. One of the first times we went camping, I didn't put any low supplies in the actual tent. Thankfully, Mike hadn't come into the tent yet and was able to grab low supplies for me to keep with me.

Camping means lots of delicious carb filled snacks like marshmallows, chips and sugary coolers. It is super easy to lose track of where your blood sugars are at. While I don't aim for having perfect blood sugars while away, higher blood sugars means attitude changes, feeling lethargic and frequent bathroom visits.

Speaking of bathroom visits, if you have type 1 diabetes you know that sometimes the bathroom is your midnight or 3:00 a.m friend.  I often joke that if I am not getting up at 3:00 a.m to use the bathroom than I am getting up at 3:00 a.m to drink a juicebox.  I almost always have to use the bathroom in the middle of the night while camping which is both terrifying and inconvenient.   Last year when we went to Darien Lake we were so far from the bathroom, I ended up driving my car in the middle of the night to get there.

While these things can be frustrating while camping, I try to not let it spoil the fun of my new found enjoyment.  As always, I will learn of ways of making it all easier, like booking a campsite that is close to the bathroom, or keeping rockets in the tent.

Kayla

FWD (Friends With Diabetes)

I have always been fascinated in the human story.  The unique lived experiences that we all have and create along the way.  The stories that shock us, make us cry or send us into deep belly laughs.  I love to hear stories of the past that would otherwise be forgotten or stories that we tell over and over again because they mean so much.  It's likely no surprise then that I enjoy blogging and documenting my personal stories along the way.   I often take time to think about where I once was in my diagnosis and where I find myself today.  

Dani & I (June 13th 2018)

I feel as though I have been lucky along my path with diabetes, I have always been greeted with support and not once felt alone in my diagnosis.  I always had someone to connect with whether that was in person or online.  I know not everyone has that privilege.  The biggest factor in keeping my chin above water, is the people that have come into my life as a result of living with diabetes.  They truly have become part of my life story in a way that is much larger than I would have ever imagined. 

Upon diagnosis, I met with Chloe, who was the first type 1 I had ever met.  I remember the exact feeling of sharing our stories - our life stories.  Hers, about her life with diabetes so far, while mine was just beginning.   I remember hearing what her symptoms pre-diabetes was and feeling so connected.  I get it, I was there too.  From there, I began to meet more type 1s through Connected in Motion and my clinic.  I met up with someone I had gone to elementary school with, Mitch, who had lived with type 1 for quite some time at that point.  Once again, meeting with Mitch was a reminder that I had support, and that I wasn't in this alone.  

It became apparent that aside from taking insulin and checking my blood sugar for the rest of my life, I needed to find these people. People like my good friend, Dani who is the absolute nicest and most caring individual I have ever met.  These are good hearted, full of lived experience people.  It wasn't just a matter of finding someone who knew what it was like to have a low blood sugar, but also finding a person who just genuinely wanted to help and be apart of my life story. 

I met so many wonderful people each and every year, trying to connect others so they could also feel this special bond.  Keeping in touch with 'my tribe' because I knew that you don't find these kind of relationships so easily, I was lucky.  Almost ten years into my diagnosis and my friends who live with diabetes outweigh the number of friends I have without diabetes.    I am so, so incredibly thankful for all of them who have shaped me along the way, been a source of motivation when I struggled, and have just been there through it all.  

Kayla 

Packing Diabetes

Darien Lake (1995-ish)

Travelling was a huge part of my life growing up.  We always went away during March Break and almost always would rent a R.V at Darien Lake in the summers.  We were spoiled in knowing that each year we would be given an opportunity to explore somewhere new.   I recall my mom's packing methods.  She would pack every kind of medication we owned, if you had a headache, she had the remedy, sore throat? allergies? upset stomach... she's got you covered.   It was a safety blanket knowing that if anyone fell ill, she had her magic bag of medication that would likely be able to help you.

I remember the days of packing just my clothes and what I felt I needed pre-diabetes diagnosis.  Fifty tank tops and twenty dresses, costume jewelry and books I'd never read.   I knew that if I forgot something, it wouldn't actually matter because likely my mom had it anyways.   I would take hours just picking out what I thought I'd wear - only to wear the exact same bathing-suit everyday.  It wasn't a huge hassle or worry, it was exciting.

Packing with a chronic condition is a lot less exciting.  You feel like half your luggage is packed with medical supplies, leaving you with just a portion to pack with the 'fun' stuff.  Everything is strategic.

"If my luggage gets lost, how many supplies will I need on my person?" 

"If my site rips out twice, and one malfunctions, how many sites do I need for my trip?" 

Trying not to get too wrapped up in the what-if's you try to pack practical, but with caution.   It is so easy to get caught up in what could happen, and begin to panically throw extra vials in your carry-on and enough sites for a round-world trip.  It's not easy being practical because emergency situations happen all of the time.  How many times have you been at a friend's house and had a site ripped out or you realized your reservoir is holding only five units of insulin? Now place yourself on an island in the Caribbean and imagine that scenario.  

I have travelled many times since my diagnosis in 2009, far-away places like Australia and Tanzania. I've managed to always come back with plenty to spare, but I rather that be the situation.  I am not sure the practicality of packing diabetes supplies ever comes. There are always those thoughts that make us grab for more 'just in case' and I think that's okay.  After all, my mom did that long before I had diabetes. She was literally ready for the plague if it was ever to hit Disneyworld.  

Kayla

Lived Experience

Once you're diagnosed you begin collecting.  Collecting resources, meters, lancets by the tonne. You collect things that you may never look at or need again, pamphlets about proper injection sites, booklets about healthy eating or log books that never will feel the splash of ink on their charted pages. We collect things because we do not know what we really need quite yet.  We collect things because we don't want to be without.

One thing that we collect that is important and not left to collect dust, are the people we meet along the way.  Whether that is the nurse that first helped diagnose us or the first person you met that lives with type 1 diabetes.  These people come into our lives and stay.  They become a shoulder to lean on, or a listening ear and they also become our resources for lived experience which is one of the MOST important and prized sources you can get.

As I go through life with diabetes, almost at at the ten year mark in 2019. I am always in awe of the people I've 'collected' along the way. Some I don't speak to very much, but I watch on the sidelines as they achieve so many amazing things. PHD's, families, weddings and dream jobs, butI also watch as they pull through the hardships of diabetes burnout, job loss, hospitalization, insurance issues and so on.  These people are the people that make living with diabetes a little easier. It is reassuring knowing that at anytime, no matter what life issue I come across, I have someone to speak to. 

Like many of my readers know, I recently got married (don't worry a blog will be coming!) Having a collection of type 1s to give me advice was amazing, those that have gone through the crazy moment of marrying the love of your life. Next, family planning, leaning into those that are going through the motions before me. Forever, I will hold those friends I've collected tight. 

Kayla

One Size Fits All Care

I've come across many people with diabetes who accept and handle their diabetes in different ways. Really and truly as much as people think diabetes is just about insulin doses, carb counts and blood sugars there are many factors that come into play when trying to manage the disease. The frustrating part of it all is that usually the care in which a person receives in clinics and hospitals alike, is the one size fits all care.

It's unfortunate because many (not all) health care providers just don't have the time or energy to sit down and focus on what the patient/person with diabetes truly needs to see the light at the end of the tunnel.   Sometimes it is a matter of listening or a matter of providing different options for care. For instance, in my case I knew my downfall came with blood sugar checking. I knew in order to avoid missed finger pokes, I needed a sensor to stay on track.    That isn't the solution for everyone, it was just one of my solutions.

I often meet with youth who live with type 1, many who have had diabetes longer than I have. They're experts in their own diabetes care, and often times they know what they're slacking in and what the answer is, but the idea of changing or putting in the extra work is daunting. I get it!  Imagine back to when you were a teenager and think about all that was on your mind, now throw in a complicated autoimmune disease.  It's daunting!  

The care one person needs can be completely different than the next.  It's about listening and finding out what the obstacle is and how as a whole community (I'm talking family members, healthcare team, friends etc.) can help the person with diabetes in a way that makes THEM feel comfortable in managing their diabetes in a successful way.

Kayla

The Running Shoe Effect

Does anyone else feel like as soon as they put their running shoes on, their blood sugar decides to plummet?  I could be running high all day, but as soon as I pull out my Nikes from the closet and lace them up, my blood sugars begin to trend down, causing a delay in said exercise.

Yesterday, M and I decided to go for a hike after dinner. My blood sugar was 6 mmol/Land steady, and I really wanted to not treat pre-hike because 6 mmol/L is a lovely number to be at.  Unfortunately, as soon as we parked our car in the lot before the trail, and began our way through the hilly dirt trail, M scanned my sensor and said, "You're at 5 mmol/L and heading DOWN!" Of course, that 6 didn't last very long before I was having to eat candies for the entire hike because being stubborn and wanting to hike, I wasn't willing to turn around and go home.

We trekked a bit further before M decided we shouldn't go too far into the trail (for obvious reasons and he wasn't likely going to be able to carry me the rest of the way, if I did pass out) I was a bit annoyed at diabetes for the fact that my blood sugar was quite high all day despite going for a walk earlier and cleaning the windows and deck, which are two things that usually lower my blood sugar and now here I am plummeting into the ground of blood sugars.

We stopped a few times seeing a deer and her babies, talking to some other hikers passing by and taking silly photos of one another, but ultimately I could feel my blood sugar still dropping (cue the white spots in vision and weird mood coming on.)  

Ultimately we got a hike in and my blood sugars were merely a lesson that at anytime diabetes can do what it wants so you have to role with the punches.

Kayla

Tech Support

Often we talk about how diabetes technology is helping the person with diabetes.  We hear about how it will make the  person with diabetes lives easier by allowing them to ease some of the burden of having to run their entire pancreas with blood drops and syringes.  But, what I have come to realize is that diabetes technology not only benefits me as the person who has diabetes, but also everyone around me.

With two weeks before I become a Mrs. I am soaking up all the love from my friends and family. We had my bridal shower a couple weeks ago and my bachelorette was just last weekend.  Now, I've spoke about the affects of diabetes and alcohol before, so I will leave that aside; however, it was so key to have the technology during these fun times to help assist my friends keep me safe when I am too busy having fun!

More and more I am feeling thankful for the new diabetes technology that is honestly changing the game of diabetes.  My fiance does not have to wait for me to stubbornly check my sugar anymore, he can just secretly swipe by my sensor.   He doesn't have to worry about us remembering if I bolused for dinner, we can easily check my pump to make sure it happened.  I think about the ease of mind that the technology must bring those people around me. I know that the tools that were designed to make the person with diabetes lives easier, in return also helps the ones that love them too!

Kayla

Adapt

While I've been silent on the blog, I've been steadily busy the past few months. I have found myself working hard at all my ambitions and really focusing on getting things done.  Oh, and I am planning a wedding which is happening NEXT MONTH!  With this being said, diabetes clearly has not been silent the entire time.

I must say though, since incorporating the Libre into my care system doing all of this on top of diabetes has been slightly easier. Not easy, but easier.  I have been finding myself focusing on building routine without letting diabetes interfere in a way that is detouring or destructive.  I am finding myself running with blood sugars that are manageable for the most part which gives me a much more relaxed mind to focus on my goals, ambitions and expectations.

I've had diabetes for awhile now and I have been able to adapt so far, because life is always changing and so are we as people.  We find new solutions and thankfully to new technology we can find ways to really live without feeling defeated.

I've wrapped up a semester of teaching at Fanshawe College and will be putting that energy into writing again and hopefully sharing more moments of my now and how diabetes is trailing beside me as I embark on a new chapter of marriage and all the other moments that will come about.

Kayla

Advocates Don't Stop

This morning while enjoying my coffee, scrolling through various social media platforms, I came to realize one thing.  Those that are considered advocates in any field in which they stand are full of passion that goes beyond recognition.  I say this because I know as an advocate often times the hard work we do behind the scenes goes unnoticed or unappreciated.  Countless hours spent on planning events, campaigns, Facebook content, or posts that at times, can barely reach immediate family.

Yet, hours on end advocates spend time researching, creating and preaching without backing down.   I think back to my Young Leaders training that I attended in both Australia and Vancouver.  I think about the mass of advocates that I was surrounded by all focused on one cause, Diabetes. We all stood proud, we stood undefeated and restless all because we believed in advocating for a disease that has taken our time, our strength and without a doubt, likely someone we love.   We stood strong. We stood strong on the stage in Melbourne, waving our countries flag, holding brave faces knowing the advocacy work we did and only hoping that the efforts, the tears and the sweat behind each project shone through.

I remember that feeling of overwhelming pride as we walked down the isles of that auditorium, trying to connect with those that passed us by.  Hoping that they could see without a doubt that we were there to advocate. We were there to show them that we are not silent. We are not living in fear; rather, we are living to fight.

But, then by the end of the conference we head back to our homes. We continue our work, we press harder for bigger projects, more media recognition, more people to join our fight. We spend the so little time we have between jobs, our families, our friends and we put it to advocating because we believe it matters. We know it matters.

We are not in this for the pay, or the pat on the back. We are in this because we hold so much passion in our hearts for what we advocate. We solely believe that we, as advocates can make a change.  A change that is worth the time and frustrations. A change that will be for the greater good, rather than just for ourselves.  We hold that passion near to our hearts and together we believe.


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I want to say thank you to all the advocates out there that stand for what they believe in. Thank you for all the time you put into your projects, groups, and work.  Without advocates change would not happen. Without advocates people who are underserved, or left behind would not have a voice nor a place to turn.  Advocates, keep your passion warm and close to your heart and continue to believe that what you're doing will make a difference.


Kayla