Thursday, May 25, 2017

He Asked, I Answered!

Something I love about this blog is being able to see in words how my life has balanced itself out.  To see those moments when I felt completely defeated, or those moments where I was over the moon with excitement.

I have documented my first week of diagnosis, to my celebrations of diaversaries.  I have detailed my trials and tribulations though College and University and breathed a sense of accomplishment when I completed both my diploma and my degree. I have documented the fears and challenges I faced while training and eventually climbing Mount Kilimanjaro and I have shared my gratitude for those fellow type 1's I have met along the way. I have shared my heartbreak during tough times in my life when relationships ended and family or friends had passed on. I have opened up my life story, one chapter at a time, diabetes related or not.

Today, I add a new chapter by announcing my engagement to my beloved Mike.  He came into my life in 2014 and we decided on forever May 22nd 2017. With this comes so much excitement as planning a wedding and being a bride has been on my mind since I was young.  Mike has been one of my biggest supporters in all of my endeavors, including diabetes.

He has been there through my highs and lows, he has picked up my numerous empty juice boxes, rocket packages and test strips and he knows that while diabetes is not easy on either of us, we both can make it manageable and work along side it along our journey together.

I am ecstatic, and so happy to see this chapter unfold.

Kayla



Friday, May 19, 2017

Blog Week 2017: More Than Diabetes


More Than Diabetes 

Let's wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.  Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes! 


Stepping back from diabetes, what is my passion?  I love to write, which I am sure isn't a surprise.  I love to create.  Whether that involves writing or not, I am passionate about creating something that doesn't exist, or at least taking something that exists and recreating it in my own way or fashion.  Mike laughs at me because anytime I am about to bake, I have the recipe up on my laptop screen, but I rarely ever follow it. "I am going to just figure it out..." I love to see what I can do on my own without having to rely on anything else.  I think that's how a lot of my ideas evolve even within the diabetes community. I am a go-getter. 

I am also passionate about my dog, which I am sure is also a given.  I have so much love for him and other shihtzu's - seriously.  I grew up with a dog from grade 6 onwards, and when I moved out on my own and finished University, after a really crappy breakup, I decided to get my own.  Cola, has been my absolute life-line and stress reliever. 

I love helping in the community and being apart of something.  I am passionate about helping others and going out there to make sure everything is just perfect. I am incredibly detail oriented so party planning, gift giving, all of that stuff, is totally my thing.  My friends and family know that I am the one to go to when looking to organize an event.  I am a planner and I am passionate about planning, and curating things just so.  My brother laughed at me recently because I said, "in my next life I think I will go to school to be a prop/set designer" he responded with, "look she's even planning her afterlife." 

Diabetes is obviously a huge part of my life and of course when people ask my passion I often respond with 'DIABETES ADVOCACY" But when it comes down to it, I do have many passions, loves and hobbies that I incorporate into my diabetes and how I cope and handle with the card I have been dealt. 

Kayla 

Thursday, May 18, 2017

Blog Week 2017: What Brings Me Down

What Brings Me Down 

 May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?


Living with diabetes is hard.  It is harder than I ever thought it would be.   When I was diagnosed I tried to just be as brave as I could. I accepted that this was the new normal.  The odd time I would get stressed out or feel defeated, but before I knew it I was picking myself up again and carrying on as if nothing was wrong.  I did this for a long time, a real long time. Forgetting that part of taking care of myself, was mentally and I was failing hard.

I wanted to be the 'inspirational' helper in the diabetes community and I didn't want to have to rely on anyone else to help me be that person.  I didn't want to tell anyone that I was struggling just as much as they were. I wanted to appear calm and collected.  At my diabetes appointments, each time I'd promise myself, this time you're going to tell them that you're stressed out, that you think you have mild anxiety and that the passing of your uncle, who had type 1 really bothered you and effected the way you saw your own diagnosis. But, each time I left the appointment to scared to say a thing. I would think, "this appointment is going too well, I don't want to kill the mood with my problems." 

I have been an advocate for people to seek help, speak to others, share their feelings, join together and be brave, yet I was doing the opposite for myself. I was leaving everything inside and the pot would soon begin to bubble over at the foot of my bed one night, or at my cousins wedding when I had just one too many tequila shots.  This was my reality that I was keeping so quiet just to save face.

But, I have learned that I am not alone in my struggle. That many people with diabetes or not, are overwhelmed and over worked.  We spend so much time trying to please others and make things aesthetically pleasing that we forget about taking care of ourselves. 

Take insulin, carb count, keep your weight stable or lose a few pounds. Lower your a1c, make sure you get your blood work done. Don't forget to log your blood sugars.  Pack some low supplies, don't drive low. Change your site and your battery too. Leave some juice boxes beside your bed. Change your basals, bolus for dinner....

but also breathe.

Just take time to breathe and to find that person, that something, that thing you want to lean on, talk to, take a break with.  Just don't forget about what is inside that needs attention. 

Wednesday, May 17, 2017

Blog Week 2017: The Blame Game

The Blame Game


Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!



I have had both good and bad experiences of blame.  I have left appointments feeling empowered and also left appointments in tears.  When a person living with diabetes goes into an appointment, they know that every little thing they have done in the past two weeks to manage their diabetes is going to be combed through. They know that they will have to give explanations, justifications and reasonings.  For someone who has been doing fairly well with management, this isn't as much of a worry. For those that are struggling - which is a reality for most, this appointment can be very difficult. 

I know exactly the moment that I decided I needed to change my care.  I was feeling the 'blame' and was only a couple years into my diagnosis.  I felt as if I was getting feedback but was not getting support.   I felt threatened that if I did not take care of myself, I was going to lose it all. My privilege of having an insulin pump would disappear and it would be up to me to get my act together.

If I could re create the conversation between health care provider and myself I'd make it something like this:

"We understand that you are living a busy life with school, your social life and diabetes. Please let us know if there is any way we can support your in your diabetes management so that we can help you get to a better place both physically and mentally with your diabetes." 


It is only a couple sentences but those couple sentences would have changed my experience.  The number one thing I hear from people living with diabetes is that they wish their health care provided saw them as a whole person and not just diabetes.  We get busy, we struggle, we feel defeated - but that does not mean that we do not care about our diabetes. We need support. 

Kayla 

Tuesday, May 16, 2017

Blog Week 2017: The Cost of a Chronic Illness


The Cost of a Chronic Illness - Tuesday 5/16

Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?


This topic is hard to discuss because as a person who lives outside the U.S my situation is much different than say someone living in the United States or a third world country where insulin, medical care and supplies are a much different situation.  When it comes down to it, people living with diabetes need affordable and accessible medication and care. No if, ands or buts!  I have had the opportunity to speak with many people living in all parts of the world that do not have access to insulin, or proper medical care to deal with their diabetes.  I have met people just across the border that are paying 10x the price I pay for my very same insulin vial.  I have met people who have to walk miles to just get their blood sugar tested.

I am grateful for the care and access I get in Canada, but it is not perfect.  I am still out of pocket for my insulin and test strips, because I am self employed.  However, my expense is not enough for me to feel 'ripped off' or 'unlucky.' I am grateful that I can go to any drug store in my city and purchase insulin, and test strips. Do I think they should be covered by the government? Absolutely. Do I think that everyone living with diabetes despite their location should have this right? Absolutely.   

Without fair priced insulin/test strips, people with diabetes may not survive this disease that is otherwise manageable. For anyone thinking that people with diabetes deserve to pay the price of their own lives is ridiculous. You know the phrase, "the cost of an arm & leg?" to someone living with diabetes this could be a reality.  This is not fair. 

I try to avoid politics because that is not where I find my fit in the diabetes community, but following along with blog week, those are my two cents!

Kayla 

Monday, May 15, 2017

Blog Week 2017: Diabetes and The Unexpected

Diabetes and The Unexpected 


Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected? 



Living with diabetes for over eight years now it is amazing to see how habits form and also fade.  Of course when we are first diagnosed we tend to be right on top of things, and we are incredibly prepared for the unexpected because frankly, everything is unexpected at that point.  As we make our way along the path of diabetes,  there still are moments of unexpectedness, and we expect that... if that makes sense.  We know we aren't going to be on the ball 100%, there will be defeat and times where we think, "ugh, I should have known this would happen!" 

I am not always prepared, in fact I say these things a lot:

"I am low and having nothing on me..."


"I forgot my pump..."


and "my site ripped out and I didn't bring an extra one."

Honestly, my tip is to have a friend, whether that is a boyfriend/girlfriend, partner, mother, father, neighbour, whoever, someone that can help remind you of these little things that we sometimes forget to do. Albeit it's annoying sometimes to have someone remind you about these things, we have to appreciate that they're looking out for us, especially if we tell them we need that help. 

This friend can also lend that support when the unexpected happens, they can reassure you, help you, guide you or just be there for you.  This can be via text or in person.   If we forget something, if something happens, it's good to have someone to lean on. 

Kayla 


Sunday, May 14, 2017

Disneyland 10K


In the late summer I started to run. I started to run because I wanted to try something new.  Shortly after realizing that I really did enjoy running, I signed up for a Disneyland 10K run. I had heard about Disney runs before and thought how cool would it be to run in Disneyland, so I added it to my bucket list! Skip forward nine months and here we are, a day after the Disneyland 10K run and already thinking, hmm what Disney run can I sign up for next.

On May 13th at 3:30 a.m we put on our green sparkly tutu's, wings and neon green tank tops and headed into Disneyland with zero idea of what we had signed up for.  I hardly slept, not only because I had to get up so early but I was starting to worry about the run and if I was going to be able to do it (look up the Disney Sweeper Bus). I also was trying to figure out what I should do about my blood sugars.


6 mile mark! 
The run was incredibly exciting. The crowd was excited and dressed up, Lost Boys, Tinker-Bells, Captain Hooks even someone dressed as a giant churro! We were in the second last corral so we watched as the people in front of us dashed through the start line, by the time it got to us, we had a running start and began running through the backside of Disney then throughout both Disney parks, looped back around and finished near the Disney Hotels.

This whole week that we have been on vacation I have been going low, I assume because of a few things, time change, weather, food choices and activity level.  I was running low before bed but knew I'd be up at 3:00 a.m, so I decided to have two Twizzlers without bolusing, hoping that I could prevent a low in the night.

My CGM just after I finished the run!
Of course eating Twizzlers without taking insulin back fired and my blood sugars spiked higher than it had all week. My blood sugars ran high until about half way through my race.  I had set a temp basal at 120% while we waited in the park, then ended up trending low near the end. Once I was alerted my blood sugar was dropping, I suspended my pump to bring it up a bit.  I ate a few rockets along the way just to keep it from going down any further because that was also a huge fear of mine.Thankfully, I finished with a blood sugar of 4.7! I was happy that my blood sugars and cooperated and I was super excited that I had finished the race!


Kayla

Monday, May 8, 2017

The Packing List

Traveling with diabetes can be nerve wracking, but packing is even worse.  Not only do you have to remember to pack your life-saving medications and 'equipment', you also have to make sure you have enough.  Depending on how long you're going away for, the only way I measure up, is by doubling most of my supplies.  So, if I am going for a week, I'd bring 6-10 sensors rather than 3-5.  This will make up for a site that fails, falls off etc.   When it comes to packing with diabetes it is better safe than sorry!


I've compiled a list of all the things I pack when traveling with diabetes:

+ Insulin

+ Insulin Cold Pack (to keep insulin cool) 

+ Test Strips (double, even triple the amount I use)

+ Insulin Pump 

+ Sites (double, even triple the amount)

+ Syringes

+ Meter (and an extra one)

+ Lancet Device and Lancets (and an extra one)

+ Low Supplies

+ Spare Pump (Travel Loaner Pump)

+ Batteries for Pump

+ CGM Sensors/Transmitter 

+ SkinTac, Adhesives, Remover, Tape & Alcohol Swabs


In the past I have gotten things like doctors notes because depending on where you plan to travel, explaining all your equipment and medications may be difficult and easier presented with a formal note. All of these things are obviously incredibly important to remember to bring along with you because you do not want to get stuck having to try and purchase them in the country or place you're travelling to.  You also want to try and think of different situations that may or may not happen, but there is a possibility they could. I hate to think the worst, but it's better to be over prepared with diabetes.


Kayla



Friday, May 5, 2017

All the STUFF!

Living with diabetes requires having a lot of STUFF. It isn't a prescription that sits in the cupboard, but a whole slew of things that hide in your fridge, purse, bed side table and your pockets.  I wanted to cover some of the non-medical things that people with diabetes may/may not use and how those things can be unique and catered to you!

* Quick note I was am not sponsored by any of these products in this post so any products listed are just things that I've found along the way, and may or may not own or use *


1.  Medic Alert Bracelet 


Poppy Medical 
This is one of those things across the board that most people living with chronic illnesses or allergies had/have at some point.  When I was first diagnosed we signed up right away and got that standard silver chain bracelet that on the back said, "Type 1 Diabetes" carved into it.  Now though, there are so many pretty bracelets and necklaces out there!  If you wear a medic alert bracelet, you know it's on you 24/7 and finding one that suits you, and that you actually don't mind wearing is so important!  This is yours, this is your style and your life - what kind of bracelet do you want?





2. Diabetes Bag 


Myabetic 
Test strips, meter, lancet, candies, alcohol swabs, extra site, syringe, insulin vial .... where do you keep all these things you have to carry on you? Most meters come with a plain black case, and honestly, I almost always ditch it and stick to a bag that I don't mind carrying around with me.  I think this is a fun way to make not-so-fun contents seem fun.   You know this bag is going to make public appearances, you know this bag is going to be on you all the time, so go and find a bag that suits you, that you don't mind flaunting!






3. Glucose Tabs 



Dex Tabs
How many times did you end up with a flavour you didn't prefer?  For me, that would be orange... but regardless, this is something you have to attempt to eat while already feeling awful.   Some people with diabetes prefer juice boxes over tabs, or candy over tabs, whatever that may be, this is something you can pick with your taste buds in mind, your willingness to grab that grape juice box, or those skittles is important!  Pick something that works and doesn't leave you gagging.







Kayla

Thursday, May 4, 2017

How to Negate Diabetes Comments

Everyone has an opinion. When it comes to living with diabetes I have heard it all. These comments may come with positive intentions? Maybe.  Or they may come at you with disapproval.  We cannot change the things people say. People are going to say whatever they THINK they should say and that is how it is. However, we can change the way we perceive these comments and how we decide to either hold onto them or set them free (and on fire).

Let's begin!

You Do Not Need to Prove Yourself 

Once I was at a diner and was enjoying my breakfast which was french toast with maple syrup (totally my favourite, for anyone that wants to make me breakfast.) I was enjoying this breakfast, I was with someone I knew and their friend and as I am taking a bite, the friend looks at me and says, "I don't think you should be eating that with your diabetes."  I finished my bite with anger and began to go ahead and explain why I could eat that french toast and even after that, it was as if she didn't believe my answer. I was mad. Sometimes it isn't worth an explanation.  

YOU do not need to prove yourself. YOU do not need to spend time talking about your health if YOU do not want to.  Testing your blood sugar, giving yourself insulin, eating your food does not invite conversation about your health if you do not want it to. 

Keep it Light 

"I heard this diet really helps lower blood sugars." 

"I heard there is a doctor in China that can cure diabetes."

We have HEARD about it, trust us. We heard about the cinnamon, the shakes, the doctors, we have heard it all.   People by nature want to connect, they want to bring something to the table and honestly, I get that.  The issue is that for people living with diabetes, diabetes is always at our table.  If the topic comes up (it likely will) try not to be offended, but rather accept their 'advice' and move forward. Keep it super light and don't engage in an argument.   All it takes is one snarky remark back on Facebook to begin a chain reaction of negativity that will haunt you all night long. 




Plan Your Out 

Lastly, I want to circle back to what we hold onto and what we let go.   It is easier said than done to walk away from a conversation and think, I am not going to let any of that bother me.  If you're anything like me, you replay conversations in your head. 

"Why did I say that?" 

"Why didn't I say something?" 

"Why did they say that to me?" 

The truth is, we can't turn that off.  But, we can actively try to find ways to get out of those conversations or turn them around.   I do a lot of stuff in the diabetes community, so a lot of my experiences are based on my diabetes and diabetes in general - something I personally don't mind.  It's more so the repetition of explaining myself that can become overwhelming.   Think of situations you've already been in, and think about what fed that conversation.  Think of ways you could have switched gears....

"speaking of food, have you tried that new pizza place!"

"speaking of spells that cure things, have you read the Harry Potter Books?"

"speaking of the witch doctor in India, have you ever travelled there?" 


Okay, maybe those were awful conversation suggestions, but I trust you will find a way to negate those diabetes comments! 

Kayla








Wednesday, May 3, 2017

Don't Compare on Social Media

Note: Don't compare yourself to others on social media.  

That is way easier to write than to actually put forward.  I know that in general I am always trying to compare my life to others, and by others I mean people on instagram that I have literally not even met.  I want to be as thin as them, I want to have a glowing tan like them and I want to have a house that overlooks my boat floating in the ocean, but guess what?  None of this makes sense.  I can take a perfect picture of my life, but I cannot tell you that my life is perfect.

This goes for diabetes.  There are countless instagram accounts for people living with diabetes.  These people are real people, I know a lot of these people in person and guess what? They take amazing photos, they engage my attention and they're all really great people in person and online.  But, the thing is, we only see what they want to share and when I say we, I am including myself.  My perfect CGM graph is a moment in time, it's not always showing the endless highs that resemble mountain peaks or the wrappers beside my bedside table.

That being said, most people living with diabetes on instagram tend to have a great balance of the highs and lows (I went there..) and that is awesome. It shows those that are struggling that it's okay to struggle and it also reminds us to celebrate our successes, such as straight lines on our CGM graphs or a perfect site change.

What's important to remember is that everyone has their battles, everyone has their faults and flaws and we cannot let social media discourage us. Rather, let us embrace social media and remind us that while we are all facing battles we are also celebrating those moments together.

Kayla

Tuesday, May 2, 2017

Making Waves

I remember sitting in the hospital, in their common room which was filled with well-loved toys and the sound of cartoons playing on the small t.v in the corner. I was on the Pediatric floor although I would be turning 19 within a few short months. I had visitors come in and out and doctors and nurses popping in to check up, give insulin and draw blood. No one talked about insulin pumps or continuous glucose monitors, they just went through the process of teaching me how to give insulin and how to check my blood sugars.

I  do recall my Uncle saying to me while I was in this common room, "one day they will have a watch that tells you what your blood sugar is," and I thought that that was such a weird concept. Wearing something that told me what my blood sugar was? But, this technology was very real, and it was already thought of, it was making waves but the wave just hadn't hit the shore yet.

Now, you can wear a watch to tell you what your blood sugar is, and you can have various devices giving you this information with beautifully lit screens and graphs, all becoming so popular and almost a standard of care eight years after my diagnosis.  I have met two newly diagnosed adults who within a month of diagnosis were put on continuous glucose monitors, a tool that will benefit their management so much.  I imagine what it would have been like to have the opportunity to do the same. Would I have understood what was going on better? Would I have been less disappointed in the random highs and lows because I could have seen them coming? I imagine those that were diagnosed say, 20, 30 years prior to my diagnosis and what they think of the new technology.  I imagine it is like my grandparents when they realized we could communicate via internet.

Now the next step is giving this opportunity to all that would love to have it. It would be great to see continuous glucose monitoring become apart of how we treat diabetes and as someone living in Ontario, I would love to see it covered alongside the insulin pump.  This technology has so much potential in making life easier and for those living with diabetes.

Kayla

Monday, May 1, 2017

We Deserve a Safe Space

Almost three years ago I created a support group called T1 Empowerment this group was made for teen girls living with diabetes. The reason I created this group was because I felt the need to give back to the diabetes community.  I was diagnosed in 2009 and was so fortunate to be introduced to people living with diabetes almost immediately, I was put into contact with Connected in Motion - which is an excellent organization for people living with diabetes.

I strongly believe that being connected to others with diabetes is so, so important. Having a space to speak, heal, scream, vent, laugh and cry is so important.  I wanted to create connections among peers living with diabetes, that would last forever. Connections that when people left the group, they still had that support. They had someone to text, snapchat or hang out with. I wanted those bonds to happen naturally, but also catered in a way that would make sense and make sure even those that are too shy to speak out, or reach out, still had a voice.

This is a difficult task because working alongside teen girls living with chronic conditions isn't always easy.  I am almost twenty-seven years old and times have changed a lot, the way we connect and the fast pace of everything around us.  There is peer pressure in schools more than ever to look 25 when you're only 15 and to get as many LIKES as you can on every social media platform. Everything has a filter now and I don't mind filtering through what is acceptable and not, but a filter that fogs what life is actually like and about. Those girls that are dealing with a chronic illness don't always have the time to focus on life as a teenager, nor have the empathetic understanding from their peers to be open and honest when they're struggling.

I can only hope that in communities everywhere, people are reaching out and connecting to one another.  Just a simple "I get it" to bring it all in.  We all deserve that safe space. 

Kayla