Thursday, December 1, 2016

Alongside My Diabetes

There is something about living with diabetes that almost erases all your memories of not living with diabetes at some point in your life whether you were diagnosed at 12, 15 or 18.   I have lived more years withOUT diabetes (18 years) than with diabetes (7 years), and yet I can barely grasp the concept of eating something without any consequences... Maybe this is some weird coping mechanism, so I don't think back to those care-free days, but regardless, those 'feelings' of life without diabetes are most definitely gone.

This morning as I got up, after a few low blood sugars throughout the night and previous day, I began to think of all the times diabetes has really taken me back.  The number of hours of missed sleep, the number of  sporadic purchases of sugar in stores to bring myself back to normal, the time I spent grumbly picking fights because my blood sugar was so high that my mind and heart were broken.   All of the times diabetes set me back from going for a run, driving, going for a walk.... There are so many times that diabetes has reared its head into my life beyond any of what I think people imagine diabetes does.

Diabetes isn't just about making healthy food choices and getting in physical activity. Diabetes isn't even just about carb counting, insulin injections or blood sugar checks.  Diabetes is a life changing disease that alters almost, if not everything that a person does.  Diabetes is serious.  Diabetes takes time away from things I love, diabetes takes a piece of mental capacity away, diabetes breaks my heart sometimes.   People with diabetes are fighting a battle every single day, every single second and we do not always understand the circumstances nor can predict what will happen.  

I cannot remember the days where my sugar intake did not make a difference to my mood, body, feelings, strength.

I cannot remember the days that I did not have to get up and use the bathroom to fight the sugar that runs amuck of my body.

I cannot remember the days that I did not have to stop, focus my mind, try to stay alert and get glucose in my system as fast as possible.

I do not remember because for the past seven years I have been fighting every single second to be healthy and live my life alongside my diabetes.

Kayla


Wednesday, November 23, 2016

International Insight

The more conferences that I attend the more I realize how greatly they have impacted my thinking and perspective.  For example, if I had never been to international conferences, I'd likely have no idea how others around the world deal with their diabetes.  Why is that important to me?  Because, learning about how others deal with their diabetes is incredibly important in building a creditable outlook on 'diabetes' because diabetes while, medically speaking is the same no matter what country you are from, everything else that factors into living with diabetes can be drastically different.


In the most honest of ways I am going to let you know that my heart breaks for those living with diabetes in countries that have little to no access to insulin or their supplies.   This wasn't something I learned form an infomercial asking me to send money, this was something I learned face to face with people who are living this nightmare.  I remember last year at the YLD conference in Vancouver, I was in a room with people who were from some of the poorer countries and listening to their stories were absolutely heartbreaking.  These people were struggling, beyond anything that I could comprehend.  Beyond  the frustration of not getting the correct test strips, beyond the anger of the rising dispensing fee, beyond anything that me, as a Canadian can comprehend.

I always tell this story of a roommate that I had when I was at the conference in Melbourne, Australia and for those that have not heard me talk about or read about it, I will tell it again.   When I arrived to Australia I had a big suitcase full of dresses, shorts, make-up, hair products, you name it, I had it stuffed into my suitcase for my 2.5 week stay in Australia.  Of course I also had diabetes supplies busting out of the seams of both my luggage and carry-on bag. An extra pump, syringes, vials of insulin, canisters of testing strips, extra batteries, back up meters.... it was like a pharmacy threw up in my bags.   

My roommate, from the African region, was telling me with excitement about her new meter. Which, I gladly admit, I get excited about new diabetes meters as well. But, when I asked her what she was using before she let me know something that has forever changed my mind set.  

"I never had a meter before this. We had to walk to the clinic to get our blood sugar checked."

This is why I can't complain. This is why I lose focus in listening to people complain that are from countries that can make it work, somehow, some way.    I am not saying that a person in a first world country does not have problems, that are real, that are vital. I get that there is a HUGE issue with the cost of insulin in countries that should be able to maintain a fair cost of insulin.  But what if you couldn't get insulin at all. What if you couldn't find insulin? What if you had to walk your family every single day to the clinic just to know what her blood sugar was?   

I am sure people will disagree with me, that the struggle is real world-wide. I know that's true.... I mean, I literally asked my mom to put test strips in my stocking because I do not have benefits and that cost is out of pocket for me.  But, with the same breath, I am so thankful to know that if I needed to buy insulin, I can go to Wal-Mart, or Shoppers Drug Mart down the street.  That if I needed test strips, I could do the same, or even call a friend who would gladly be able to share their supply.  It just isn't that way in other countries around the world and it breaks my heart. 

I am grateful. I am thankful and I will never, ever forget the life lessons I have learned from international diabetes conferences. 




Tuesday, November 22, 2016

That Voice

"Kayla...."

"Yes?"

"How much insulin do you have on board?"

"Well, my blood sugar was high, I took the correction plus some, maybe 4 units left on board?"

"Shouldn't you check?"

"I am tired..."

"Shouldn't you just check? Look at your pump."

"Okay, in a minute..."

"Do it now. Also, shouldn't you check your blood sugar?"

"I do feel sort of low... and I may have a lot of insulin on board.."

"Yes, you may go really low in the night?"

"What if you don't wake up from you low?"

"Do you have any rocket candies left? Did you eat them all?"

"I think I have some in my travel bag in the other room.."

"Shouldn't you go check? What will you eat if you are low and don't have any left?"

"Well, I could maybe have a glass of milk and.."

"That won't be enough."

"Go check your blood sugar..."

"I do feel pretty low..."

"You really should put your meter by your bed and find some rockets."

"I really should..."

This is an example of the inner voice that haunts me when I turn in for the night.  The voice that is like a nagging mom that tries to convince myself I need help, sugar, a glass of water, anything to do with my diabetes, this voice nags me.  I guess I am lucky to have this voice. It acts as a reminder to keep myself in check and not let sleepiness nor laziness take over.  But, there are nights when this voice hardly mutes itself and keeps me worried or on the edge.  Often when I am between sleep and wakefulness and need to take time to wake my body to take action.  This is the conversation between diabetes and its owner.

Kayla

Saturday, November 19, 2016

Chasing Highs & Lows

Chasing highs and lows, if I gave you a list of these numbers can you tell me what the pattern is:  6.2, 12.8, 17.5, 15.2, 3.9, 14.2, 3.5, 10.8. If you guessed no pattern, you're correct.  These 8 numbers are my blood sugars I logged yesterday and yesterday wasn't a 'wacky, is it a full moon day,' these days happen to people with type 1 diabetes... where we just can't seem to catch the lows and highs and keep ourselves, what feels, above water.

With the fluctuations of blood sugars ranging from high to low, I find myself feeling moody, annoyed,  and anxious.   There are days that my blood sugars stay fairly close in range, but then there are days like yesterday where I literally feel like I am on a teeter-totter. It's hard to try and understand what 'sets' off the blood sugars, as you can see I checked eight times yesterday and still couldn't seem to find a blood sugar that wasn't either high or low.  

It's a tough gig trying to manage your diabetes and the rest of your life and still be a civil person. It takes patience and a deep breath sometimes for us to push through the frustration of the neon glowing number on our meter screen.

Kayla

Friday, November 18, 2016

Lifelong

Sometimes I despise diabetes. When my blood sugar is high, when I can't keep my blood sugar up, when my site rips out and falls onto the floor, when I use my last test strip while I am out and wish I had one more... there are so many reasons to despise the disease that takes up a large chunk of my mental capacity, but in the same breath, I am so thankful for diabetes.

It's such an odd saying and I've said it so many times, I think I forget the significance of why I say it, but last night reconfirmed why I seriously am so thankful.   I have been so lucky to meet amazing friends through diabetes and often times I think of it in a global sense, I have been so lucky to travel the world to be with other people living with diabetes, but in reality, I have my own lifelong diabetes friends that live very close to me... I mean, a couple hours away, but way closer than across the world and I am so thankful that I get to connect with these people.

Last night, my friend Dani was in town and I invited her to check out my Empowerment group that I run weekly with teen girls from my community.  Dani had been to one of these events before, but she was lucky, we had a full house of teens buzzing with excitement. She got to meet the girls that I spend an hour with every week and I was so happy that she got to be apart of the magic of my diabetes support group. Then, she came by my house, we have recently moved, so I was excited to show her my new home.    But, beyond it all, I was so happy to be around someone with diabetes, who gets it, who has been there for me for many years and who happens to wear the exact same pump as I do (purple and proud!)

It's the little conversations between one another that mean the most, the reassuring that feeling of, 'I get it. Don't worry.' I probably could spend hours just dishing out my feelings to her, person to person, and really venting about the frustrations of living with diabetes.  Seeing her pump tubing coming out of her pocket, her pump falling out of her coat jacket, or her going to check her blood sugar because she felt low.... all of these things that take up my day, take up my time, take up my strength, all of these things that she does too.

I am so incredibly thankful because, I have many friends that live with type 1 diabetes who I know I would have never met otherwise.  These people are incredible inside and out and despite us sharing the same disease, we share a friendship that can't quite compare to any other.

Kayla

Friday, November 11, 2016

DiabetesMine: Innovation Summit

I was lucky enough to have been selected as one of the winners of the DiabetesMine: Innovation Summit contest, in which people/parents of people with diabetes were invited to attend a conference in San Francisco, California among some interesting participants that are actively trying to improve the lives of people living with both type 1 and type 2 diabetes.   This conference was unlike any conference I had attended (and I have attended quite a bit!)   I found an instant connection with some of the other winners of the contest and also with the content that was discussed during the conference.




The conference started off with a social hour (the conference was over a two day span, but we were invited to the social hour of the first day, and the conference in its entirety the second day) The social hour gave us an opportunity to meet the other winners of the conference, but also meet some of the corporations, tech people and some other people living with diabetes and participating in the diabetes community.  It was a great opportunity to catch up with some familiar faces for me that I didn't realize would be there, including Paul Madden (former IDF Young Leaders member) and Christina (former IDF Young Leader and head of Diabetes College Network).

The following day, like most conferences was a full packed day, with a lot of information, great input, and emotions.  Here are the things that stood out to me:


1. Kyra Bobinet, M.D: Speaking about engaging in health, happiness and wellness 

I LOVED this presentation. It was totally up my alley of happiness and wellness and I really think I took the most from this presentation. While it wasn't completely about diabetes, and was more general, I felt like every bit of information from this presentation as useful, grounding and inspiring. I really took a lot from this presentation, including working on better focus, mediation and mindfulness.  Kyra had a lot of interesting studies and facts to back up her research and I really was engaged in the theories and ideas.

2.  Prioritizing Quality of Life 

A few of the speakers talked about QOL in their presentations and I felt like it was very eye opening and I almost wish they could do a speakers series for all of our endocrinologists and diabetes teams.  They really highlighted the importance of measuring QOL and what that truly means.   One speaker, Kasey Boehmer, talked about the idea of a 'non compliant' patient, something we may sometimes be told we are!  In reality, she broke down the background of a patient and how it is KEY in working alongside patients.   I took what I learned from these presentations and applied them to my T1 Empowerment group, focusing on root causes of negativity in regards to their diabetes.  I think it is important to grasp the understanding of a person as a WHOLE and not just as their disease.

3. Games and Apps

As many people know I am a HUGE social media lover, and there are certain apps that I use daily, social media related or not. So, it was so interesting to hear from a couple speakers about their initiative in making online games and apps for patients to keep them interested, motivated and plugged in.  For example, Jennifer Shine Dyer, M.D, is creating a Ninja video game specifically for people living with diabetes and Anna McCollister-Slipp (a person living with diabetes) also is working on an app for people with diabetes!

4.  We need support and we need to fight for it 

Anytime I go to a conference it is often a global initiative with people from other countries besides my own, Canada. There is a huge issue in awareness, funding, expenses and support and it is very clear at every conference I go to.   People are emotional, people are tired and people sometimes need to vent those frustrations in order to help brainstorm a better solution.  I do feel lucky to live in the country I live in, I know it is not perfect, and yes, my insulin and test strips are not covered, those are my expenses, but there are so many countries out there that need help, assistance, even just a person to say, 'I know how you feel' or 'I have been there.'    That is the beauty about conferences, we get to connect with one another and really share ours stories and most importantly empower one another.   A mother of a child with diabetes, Brenda Hunter, showed how powerful a voice can be and how that alone can empower change.  She is the co-founder of No Small Voice, which is an initiative to provide transparency with insurance companies in the U.S.A.

Overall, this conference was a success. I truly enjoyed meeting the people I did, and hearing new information that has really sparked my drive to make change in the diabetes community.

Special thanks to Michael Hoskins and Amy Tenderich for making this experience happen.



Kayla





Disclaimer: DiabetesMine paid for my flight, two nights stay and food during the conference. 



Saturday, October 29, 2016

Syringes & Cookies

Today diabetes really tested me. I don't often get mad at my diabetes but today it really threw me a curve ball in what was a wonderful day. Just as I was enjoying the bread bowl, I bolused and got a "no delivery" notice. I troubleshooted for a bit but no results. I tried not to panic as we were no where near our hotel and I didn't have a syringe on me (we transferred things in bags and I'm human and forgot to pack some supplies).  Thankfully I was meeting a friend who also had diabetes but it was going to be a couple hours until she could get to me.

Mike and I tried to find a pharmacy with a pharmacist so we could get a syringe. Then, I could extract insulin.  Thankfully, Walgreens hooked me up with a single 50 cent syringe and I then had to transfer insulin (finding out my reservoir was totally messed up... literally broken and not unhooking properly...) regardless, in the middle of a not-so-nice mall I tried to get enough insulin in this large syringe so I could at least get in a bolus for that massive bread bowl Mike and I shared (of course I had massive carb filled lunch) To be honest, I was so panicked about the whole thing, in the middle of San Francisco that I didn't really carefully measure the amount of insulin, I did know it was under the 10 mark, but my blood sugar was 24.7 mmol/L I needed it.

So, at this point we had walked quite a bit but we had a lot more walking to do. I ignored my pump as it vibrated for attention, but clearly wasn't doing its job. We did some more sight seeing and frequent blood sugar checks, slowly but surely it was going down, however it was still high so I took another bolus (mind you I had no background basal, so I had to keep that in mind) about two hours or less later, I began to feel off. I checked and I was going low and I also had no idea how much insulin I had on board. I did know this, I once again failed myself and didn't back sufficient low supplies and I knew we had a lot more walking ahead of us.

So, we went on searching for food. We found a yacht club.  They were having an event and we hovered by the door as there was a table that read "kids only" and had a delectable plate of cookies on it! Perfect. I'm not a kid, but I'm low!  I asked a lady that was by the door and explained my situation much like I had to do to the pharmacist but different circumstances. With no hesitation she told me of course. I grabbed a couple "kids only" cookies and headed on my way.

Soon, it was time to meet with my friend who was prepared to give me the supplies I needed. I am so thankful for those global diabetes friends I have made along the way. But, also thankful for the community in which some how works together to protect one another, and help each other out. Because, if it wasn't for the pharmacist, Mike, the cookie lady or Krystal... today would have been much worse.

Kayla