Tuesday, August 23, 2016

The Web

Last spring I did a workshop with the teen girls from my support group T1 Empowerment.  The point of the workshop was to better understand the web of who is connected to our diabetes beyond ourselves, the patient.  It was an interesting task to give the girls because a lot of them struggled to see past the immediate and realize just how many people really do make up our health care web in regards to diabetes care.

what the teens came up with
I felt this was an important workshop because a lot of times when we are managing our diabetes on a daily basis we forget who else can help us along the way. We can feel swamped with numbers and emotions and forget that we can also reach out.  Not only do these people make impact on us, but we also make impact on them.

I am lucky, I have resources, while I understand very much so, that many do not have such a glamorous web to show.  I tried to in-still that in the minds of the teens who do at times struggle to keep afloat with a disease that does demand a lot from them.  

The funny thing, was that these teens almost saw these ties as an annoyance, and I totally get that. There are times that I do not want my friends telling me how to take care of my diabetes, despite their best interest, or times that I do not want my endo or nurse judging the way I have been taking care of my diabetes, but the important thing to take, is that no one in this web, is out to get you, but rather to walk the journey with you. 

This web is ever changing, growing, shrinking and that is okay. The important thing is that we recognize who is in the web and remind ourselves that they are there for us. 

Kayla 

Monday, August 22, 2016

Why I Quit Diet Pop

Over a year ago I quit drinking diet pop. For most people living with diabetes diet pop is a dietary staple. It's one thing we can enjoy without having to carb count, and bolus for. It's a treat without consequence, but is it really? I don't know. 

Before I had diabetes I drank a fair share of diet pop (specifically Diet Coke) I loved it and as years went by and (I was diagnosed with type 1 diabetes along the way) my love for it grew stronger when I realized literally every other drink besides water would spike my blood sugar. All my friends and family knew that Diet Coke was my vice. People would tag me in memes, buy me Diet Coke and even would purchase me novelty Diet Coke things like Christmas ornaments. It somehow became my identity like a cat to cat lady - I was hooked. 

 But over a year ago I noticed something. I noticed that when I drank Diet Coke things started happening to my body that were not normal.  Hives covering my entire body, swollen lips, joints and eyes and pain to those joints as well. It was awful and I went on for years with these symptoms on and off with little to no idea what was causing it. 

I haven't had any formal testing done BUT I can tell you that once I stopped drinking Diet Coke (cold turkey) it stopped almost immediately. Trust me, I had hives everywhere and they were far from minor - they made me hate my body to the point I didn't want to go out and feared eating the wrong "mystery" thing to make them worse.  There were times I could not go out because of a giant swollen lip - although my friends encouraged me that it just looked like extreme collagen injections. Not cute. 

I had to say goodbye to the beloved silver can and break up with something I was almost depending on. Bad day, Diet Coke. Hot day, Diet Coke. Celebration day, Diet Coke.  Now a year later I'm proud of myself that I have not touched diet pop, I'm even more excited that I haven't had any joint pain, swelling or hives.  As a person living with type 1 diabetes and being "allergic" to diet pop I'm sure my fellow diabetics can sympathize.  

Regardless it leaves me with questions about what we consume and the overall consequences of those health choices we make. I'm not shaming anyone who enjoys Diet Coke, because if it wasn't for the relief of my symptoms, I'd likely be drinking a can right now. 

Kayla 


Friday, August 19, 2016

Travel Alone

I think travelling alone at least once should be on everyones bucket list. I have been fortunate enough to have had the opportunity to travel alone a few times, often because of diabetes conferences.   While travelling alone can seem daunting to some, I think it's important to do at least once (or more!) and here is why:

1. You learn more about yourself and your capabilities 

Trust me when I say that when I was younger I did not want to leave my mother's side [Ask Mom!] I was constantly checking to see where she was and I am pretty sure she was about ready to seek me some professional help if I didn't grow out of my attachment issues.  Obviously, I have and [phew!] but my mom always notes how crazy it is that I went from her shadow to the globe-trotter I am now. When you are on your own and especially in a foreign place, you learn what you're comfortable doing and most importantly how far you're able to push out of your comfort zone.  It's all up to you, there is no one pushing you to take the scenic route, zip line alone though the rain forest, or take a sketchy train through Compton, that's your choice and when you choose to do something with your full power, it gives you a better understanding of yourself and your capabilities.

2. You have no other choice but to hang out with yourself or make new friends 

San Diego 2016
We all know that when we travel with friends and family we tend to hang around friends and family 24/7 during the trip, maybe not all as a group but rarely do we break off and do our own thing for a long period of time. When you travel alone you're kind of forced to either sit alone or make new friends.   Personally, I tend to sit alone, and take the time to really connect with myself - meaning that I give myself time to write, take in the scenery, tour around the city I am in or really listen to what I need. You will find you're chatting to more people around you, the waitress, the bar tender, the lady lounging by the pool,  you make friends along the way, even if only for a short period.

3. You grow up a little 

I am 26, so clearly, I've over the whole "when I grow up" but travelling keeps you humble and encourages growth and education.   I believe regardless if you're travelling alone or travelling with a friend/family member you grow and learn, but there is something different about travelling alone. Having experienced both, quite a few times, each time I come back from a trip alone, I feel like I have a better grip of reality, something that comes only from exploring alone.


Hopefully you add 'travel alone' to your bucket-list after reading this.  Of course I understand people's concerns with travelling alone - in particular safety. I have put myself in some-what [could have been] dangerous situations travelling alone, so that is a real fear, but at the same time, living in fear can be incredibly limiting.  I choose to fear less but be aware of my surroundings and learn from my mistakes [i.e don't walk around at night alone, know where you're going and your surroundings and have access to a cell phone etc.]

Would love to hear from others who have travelled alone before!

Kayla


Thursday, August 18, 2016

Beeps & Buzzes

There is a lot of alarms, beeps and vibrations that come with diabetes.   If you are totally decked out with a new-ish meter, an insulin pump, and a CGM of some sort, then you really know a lot about beeps, alarms and vibrations.  I actually have turned off a lot of the 'sounds' and switched it to vibrate because I was getting really irritated by the sounds, of course if I am home-alone then the noise alerts (especially with CGM) are important, but for the most part the 'beeps' of diabetes drive me crazy.  

These machines, while incredibly helpful, can really be like walking around with a broken alarm clock. Usually my meter is buzzing to let me know I am high or low, or have inserted a strip, my pump is buzzing to let me know the same information, or bad news like 'low reservoir' 'low bat' or 'no delivery' and my CGM is sending more buzzing signals to my insulin pump to let me know what is happening with my blood sugar in the moment.  All kinds of buzzing.

For the most part you get used to it and you find what works for you. Some prefer to have the sound alert, while others prefer the vibrations.  Sometimes it's a matter of what will grab your attention in case of an emergency and not necessarily what you prefer and that makes sense.   Annoying or not, it comes with the choice of using the technology - so I'll take it.

Kayla

Wednesday, August 17, 2016

One Intention


I am all for being positive, sending out positive vibes and surrounding myself with positive people but this isn't always an easy mentality to keep. We often are faced with obstacles that limit us and make it incredibly hard to see the good in the day, or the people around us. We get bombarded with negativity and finding the positive light is often fogged.

I find diabetes has a way of being that negative block in a positive day. When I wake up I have to check my blood sugar and that can really play a huge role in how I feel. If it's a great number, I often feel more motivated to get up, and continue to check my blood sugar throughout the day but if it is a higher number I feel tired, and less motivated to really take care of my diabetes in the way that I should. That morning number can really alter your mood, just like weighing yourself can have the same effect.

I think the key is to take the time to set an intention for each day. Diabetes takes a lot of brain power and effort and if we wake up and do not like our blood sugar we are more likely to feel that sense of loss of control. Instead of letting numbers (whether that is blood sugar, weight, whatever fits your situation) if we focus on one intention for the day and really put effort into that regardless of the outcome - we may have a better chance of staying focused and positive and in turn send out positive vibes to others and eventually surround ourselves with positive people.


An intention could be something simple like, "Today I will check my blood sugar four times" or something more mindful like, "Today I will think one positive thought after each negative thought that comes to mind" There is no right or wrong intention, as long as you feel like it will help you focused, and add positivity to your day. I am a big fan of taking one day at a time. For me, it's a way to keep my focus strong and also to not get anxious about the future. 


Kayla

Monday, August 15, 2016

#BDthoughtleaders

On August 11th, BD invited 14 individuals who represented a portion of the diabetes online community [DOC] to their Thought Leaders event. Some familiar faces and organizations were in attendance including Children with Diabetes, and a home-grown organization, Connected in Motion - an organization that played a significant role in my diabetes life.  There were also bloggers present including Karen Graffeo from Bitter-Sweet and  Scott Johnson from Scott's Diabetes.  Others included:



The Sugar Free Shawn Show
DiabetesMine
IronLady Anne 
DSMA 
DiaTribe
My Diabetic Heart
Glu 
ComedianChelcie Rice 
Close Concerns 

and of course myself, representing Kayla's Life Notes.



We were flown to beautiful San Diego, California to learn more about BD and their involvement in the diabetes realm of healthcare and beyond (way beyond) but most importantly we had the opportunity to show BD who we were as individuals living with diabetes as well as our roles in the DOC.  BD wanted to know what we wanted as patients and that was key. What that said to me was that diabetes products aren't only created with the key purpose of administrating insulin, or checking blood sugar but also to make living with diabetes easier and more comfortable.

Clearly very excited to be here! 

I was surprised to learn that BD had been around for so long. In 1924 BD made the first syringe specifically for injecting insulin which began their journey into diabetes care. How remarkable to have been there since the beginning only shortly after Sir Frederick Banting discovered insulin in London, Ontario.  Beyond the products BD also has a lot of amazing resources for those living with diabetes as well as for health care practitioners including the FITTER and Diabetes Innovations US/Canada website.

Heather (Connected in Motion) + Myself
Long time friends both living with t1d

I love to see a company interact with those that are living with type 1 diabetes and especially when they are also looking to create products to give us living with diabetes, more options.  Everyone with diabetes prefers something different, it's not a one size fit all type thing and BD gets that.  With their soon-to-be released infusion set, BD FlowSmart Technology  [available in the US and France first, then shortly after Canada] BD will be a part of the pumping game and I think that's awesome.


BD MiniMed Pro Set Infusion Sets
Group Photo
Source: Diabetes Innovations US 


Disclaimer: BD paid for my flights, travel, two nights accommodation, and meals.




Monday, August 8, 2016

Community Is Important

I think our community is ever changing and is made up of many different sub groups.  There is something about finding our community and knowing exactly what that is, that makes life seem just that much more reassuring.  Whether that is our physical community, our neighbours, the post lady, our grocery store clerks, or our employers or employees, manager or co-workers.  Life is about connecting and creating that net where you are familiar with where to go and/or who to lean on.

Of course there are moments when your community starts to pull away, or you move and have to restart and this can be hard.  Losing a sense of community is difficult and for those that feel they have no community tend to fall between the cracks.   I recently read an article from www.tinybuddah.com written by Jen Waak, that outlined the importance of having community.  She actually is recounting the climb up Mount Kilimanjaro which is something I am familiar with! The six reasons highlighted in this article are: collective wisdom, pushing our limits, support and belief, new ideas, borrowed motivation, and accountability.  I feel like all of these can be applied to any type of community.

 Of course some communities are not face-to-face and a perfect example is the online community. Whether that's your Facebook friends you never see but always keep in touch with or in my case, the diabetes online community (DOC) that is made of an abundance of people just like myself living with diabetes all over the world.   I can apply the reasons community is important to how I feel towards the diabetes online community and here is why:

Collective Wisdom: 

When you're diagnosed with diabetes, you come without any knowledge. Unless someone in your family has diabetes and you've been exposed to it, most do not know much about diabetes upon diagnosis.  I thought I knew some things about diabetes, but it was all in relation to my grandparents (the one pill a day, check blood sugar every Wednesday type of diabetics) but really I didn't know much.      It takes wisdom of group (community) to help understand diabetes.  My first guide was my Uncle Bill who lived with type 1 diabetes, and then my community grew, my doctors, my nurses, my new friends with diabetes. All of their collective wisdom helped me and in turn now I have gained some wisdom to put forth in my community both offline and online.

Pushing Our Limits: 

Diabetes is hard. There are days that I feel like I do not want any part of diabetes and I give about 10% of my effort, other days I am on top of things giving at least 80%.  It's hard to deal with diabetes 24/7 (for the rest of your life) and be alone. We need community to lift is up and push our limits when we thought we have reached an end.  There are days that I get very upset about having diabetes and I need my community to remind me that this isn't the end, and give me that push that I need to get through the next 24 hours.

Support and Belief: 

This is huge. Anytime I talk to someone struggling with their diabetes, I ensure them that there is an online community that is waiting with open arms. Whether you be the person with diabetes or a parent, there are so many groups on Facebook/Instagram/Twitter etc.  Trying to manage diabetes without community is difficult.  Having the belief that you're not alone (and you're not) and combining that with the online diabetes community - that's huge.   Even if you don't want to participate in chats, I believe even being apart of it, reading others messages of frustration and triumphs can change your outlook.


New Ideas:

I don't know about anyone else but when I am in a different space, such as a library, a local coffee shop or even a bench at the park, I have the most clear view of what I want and also new ideas.   I get the ideas from the community around me and feel like I can really take on any project I have in mind.  The ideas come from the atmosphere in which I am given an opportunity to be apart of.  With diabetes, anytime I go to a conference, seminar or event with others that have diabetes, I feel the new ideas buzzing. While being online may not give you a fresh space to work with, being apart of different online communities may. But also, I encourage people to step out and find offline diabetes communities if possible.  A good place to look is Connected in Motion or any local diabetes camps if you're within the age range.


Borrowed Motivation: 

There has been so many times that I felt enraged by my diabetes, but simply going on Instagram or Facebook and seeing others that are in the same boat as me, has given me borrowed motivation to keep going. My diabetes community is always there to motivate me, and reassuring me I am not alone.

Accountability: 

Part of my blog is about broadcasting my accountability. I was honest about an awful a1c and the reason is that, I am accountable for my diabetes. I know that being honest and being a genuine person in the diabetes community is incredibly important. If I told you I always check ten times a day, my a1c has never been over 5.5% and I have no idea what it feels like to have diabetes burn out - I'd be lying and I am sure most of you would see right through that.  Being accountable for your actions is a duty to your community and in return we can only hope for the same.


While I think this is a long winded post, I do think it is important. It backs my reasoning behind starting T1 Empowerment two years ago. Community is important, online or offline.


Young Leaders [all living with diabetes] during the IDF Conference in Vancouver, BC in November 2015 

Some good online diabetes communities [Facebook] to be apart of are:

Type 1 Diabetes Memes  (Naturally)

Beyond Type 1 

Glu 

DiabetesMine 


Kayla