Invisible

 'Invisible illnesses'  a term used to describe illnesses that are chronic but may not be visible such as depression, ADHD or Asthma.  At the end of September - early October is Invisible Illness Week, and I get that that is not anytime close, but I think that the idea deserves to be recognized all year round, because those of us with invisible illnesses are fighting everyday.   So, this week, today, I decided to talk about it.

I never really thought about the connection of an invisible chronic illness and diabetes.  Often I see copy and paste esque statuses on Facebook that highlight the idea of having an invisible illness but I never thought to relate it to my own situation as a type 1 diabetic.  Living with diabetes I see my disease very well, it is not invisible to me.  I see my insulin pump, my tubing, my sites and CGM, I see the blood on my finger tips and the carbohydrates on the cereal box. I see the numbers from high to low and the blood test strips in my purse and car.  There is lots of visibility going on when living with diabetes.

But, to the public, often no one realizes I have diabetes. Often my insulin pump is tucked neatly in my bra or pocket, my meter is in my bag, along with my strips, and low supplies. I rarely bust out my supplies mid shopping trip or while relaxing on a patio, so to many people I am just your average person living life as normal. What makes diabetes invisible is just that, I can perfectly go about my day without anyone questioning my health. That being said, I could go low or really high and cause a scene, but for the most part, I can linger around town without anyone noticing that I am dealing with diabetes 24/7.

I think that this week that will come around again this fall, the important thing to remember is that everyone is fighting a battle, and to really think twice about making any judgements about anyones life.  I may not look like I am dealing with anything serious, but we all know how serious diabetes is. I am looking forward to this week, to be able to raise even more awareness about invisible illnesses.

Kayla

Mental Health Support

I never realized how tied in mental health and diabetes is until I did some online research.  According to the Canadian Diabetes Association, 30% of people living with all forms of diabetes face some type of depressive symptoms. Even though I did not know this statistic before, I can see how it is relevant. When I think about my life with diabetes, I know that there are moments where I feel like I could crack.  It is almost a 'don't think about it too much or else you'll lose it' feeling and I can only assume that many others are feeling the same way.

October 25th 2015 - Aerial Yoga = good for my mental health

 The system isn't flawless. I have never been asked if I wanted to see the social worker at my clinic, in fact I have no idea who my social worker would be.  I am sure that if I asked to see one, I would be directed right away, but the issue is that there are people that do not want to ask, or do not realize they need someone to talk to.

From the Canadian Diabetes Association page on Clinical Practice Guidelines, they have outlined who is most at risk for mental health issues [of those that live with diabetes] see below:

Risk factors for developing depression in individuals with diabetes are as follows:

• Female gender
• Adolescents/young adults and older adults
• Poverty
• Few social supports
• Stressful life events
• Poor glycemic control, particularly with recurrent hypoglycemia
• Longer duration of diabetes
•  Presence of long-term complications 

All of this makes clear sense and while I am questioning why I have never been asked if I want someone to talk to, I do wonder what we can do as a community to help those that are suffering with mental illness and diabetes.  I know there isn't a quick fix for this and I am not suggesting that I have the answers. I just wish that there was more than could be done to prevent those living with diabetes from feeling hopeless or alone.   

From the guidelines, I think that I can contribute by trying to create more social supports for the people that I know with diabetes and while that may not prevent mental illness from appearing in patients with diabetes, possibly it could help in making those that are suffering feel stronger and united. 

Kayla 

Not Your Type

I have a hard time when people start throwing around what a type 1 or type 2 diabetic looks like. First of all, no type 1 or type 2 diabetic looks the same. When we put diabetes aside we are all people here.  I recently saw a quote that was set against some pretty flowers with pretty font and at first I was pretty drawn to it, it said something like, 'my diabetes isn't the kind of diabetes you see on T.V' and at first I got really annoyed by it, but then I gave it the benefit of the doubt, but to be honest I am not sure what the author of the quote meant by it.

First, I immediately thought this is type 2 shaming.  I admit, I am quick to tell people that I have type 1 diabetes even though most people have no idea what that means.  Most people when they ask are basically asking, "Did you do this to yourself you poor soul?" and really if they asked me that, then I could simply say,  "NO, no I did not," and walk away. 

The reason I am quick to tell them isn't because I think being associated with type 2's is bad, because frankly, I know some awesome type 2 diabetics, including my wonderful Grandma and Grandpa.  BUT, it's not what I know about diabetes because I know that I know more than the general public when it comes to diabetes.  It is what the media says about diabetes. So, that brings me back to giving that author the benefit of the doubt in saying that the media does NOT do a good job at talking about diabetes.  They make diabetics look obese, elderly, out of shape, useless, a pain in the butt, the list goes on.  When really, we are all awesome . . . okay that's bias.

The poster that I am doubtful about. Source: Unknown

So, if the author of that quote is saying indeed that those living with ANY kind of diabetes, does not represent the type of diabetes on T.V, then perfect.   BUT if the author of the quote is suggesting that the type of diabetes shown on the media is a representation of type 2 diabetes, and therefore, the type of diabetes on T.V is not MY diabetes....then, I don't like the flowery, beautifully designed quote. 

I don't think that any kind of diabetes is properly represented in the media and that's okay, because if Family Guy or the Simpsons gets a kick out of someone needing sugar or eating too much of it, then whatever - that's comedy and we can't get our head caught up in that.    BUT, I don't think that we should say things like, "Well for type 2's that may be true, but type 1 is much different." Okay, they are very different diseases in some aspects, but unless you are in fact a type 2, I don't think it's fair for us type 1's to make any kind of judgement.    

I know healthy, active, young type 2 diabetics that do not deserve to be stereotyped by anyone.   When explaining diabetes to my friends, family, or strangers at the grocery store, I try to give a clear and non-stereotypical explanation of all the different types of diabetes.  It's important that all of those living with diabetes work together, because I believe we can all learn from one another and pitting against each other isn't okay.

Kayla 

#iwishpeopleknewdiabetes

Today, April 20th is #iwishpeopleknewdiabetes day! This was started by Kelly Kunik, who I met just last week at the Medtronic Diabetes Advocate Forum.  It is meant to spread awareness about diabetes on more of a personal level, as anyone can google 'diabetes' and find what it means to have diabetes, but does the public really know what people living with diabetes do and feel every single day?

I decided to come up with 3 quick things that I wish People Knew about Diabetes, specifically with my diabetes.  I say 'my' because everyone deals with diabetes differently, and my experience living with diabetes can be much different from say, the little girl I nanny with diabetes, even though we both have the same diabetes.

#iwishpeopleknewdiabetes

#1. I wish people knew diabetes takes up a lot of my time & mental space.   Diabetes is a 24/7 disease, but that is easy to say and harder to understand.  I am having to worry about my diabetes on almost a constant basis, for instance, if I am going for a walk, I need to think about what my blood sugar is going to do? Will I go low? Will it spike? Should I set a temp basal? Or should I suspend my pump? How far am I going to walk? Should I have a snack first?  Am I tired from the walk or tired because I am low?  The list goes on.

#2. I wish people knew diabetes has no cure. I don't know how many times I have been asked if I will always have diabetes.   As of right now there is no cure, and even though you may have read about cinnamon pills, orka diets or Dr. Oz curing diabetes, none of that is true nor helpful.   I must manage my diabetes through insulin, and that is that. 

#3. I wish people knew diabetes is scary. Now, don't get me wrong, I don't walk on egg shells. However, living with diabetes can take you to dark places.  It can make you think about the worst on the best of days.  There is a long list of complications connected with diabetes and to save you the google search time, anything that you can think of is awful, is basically a complication of diabetes.   I worry about my future and my health, from my head to my toes, literally. 

The list could go on and on, but my to-do list for the day also goes on and on.  

For more information about the day visit: www.iwishpeopleknewthatdiabetes.org 

Kayla 

Diabetes Advocate Forum 2016

Last week I attended the Diabetes Advocate Forum hosted by Medtronic Diabetes in sunny California.  It was a great experience to be included in a group of some talented and experienced diabetics/caregivers.   This year was the first year Medtronic Diabetes brought Canadian advocates, as well as American and Latin American advocates.

My take home from the experience was that there is a lot of exciting development in technology in the diabetes realm. I kept thinking how exciting of a time it is for those living with diabetes. We learned that Medtronic has a great partnership with IBM Watson which could lead to many amazing future advancements, fingers crossed.  I am not much of a techy person, but any technological advancement that makes my diabetes easier, I am on board. For more information: IBM Watson & Medtronic  It was interesting to take a walk through the Medtronic Museum and see the evolution of diabetes from a time of taste tasting urine, to a time where we can wear a tiny device to check our blood sugar for us.   Amazing.

I also felt that the advocate forum was very eye opening to the fact that we are all looking for a better life with diabetes.  It's not the diabetics and their caregivers fighting alone, but corporations like Medtronic really are listening.   It was so great to meet the people of Medtronic, from corporate to the  mechanical engineers who work in the plant making the products.  It gives me an appreciation for my pump and sensor in a way I don't think I would have felt before.  I see the work that is put into making my sensor and the work that goes into reaching out to those with insulin pumps from a corporate level and I can appreciate their efforts.


I think the important thing about the advocate forum is that we all were there, and able to share our ideas, stories and questions.  It's so important that we all work as a team, no matter what the belief is, no matter what product you use or choose not to use. I want a system that will make my life easier with diabetes, and I want that for everyone.

Kayla

*** Disclaimer:  Medtronic Diabetes paid for my travel, accommodations and food for this one day forum event. All views expressed are my own ***

A Reflection

This day seven years ago I got a call.  I was sitting on the couch with my brother and the phone rang. The receptionist from my family doctor told me that my blood sugar was 24 mmol/L We had done blood work prior and that was the result, a really high blood sugar. I didn't know that meant a high blood sugar because the receptionist gave no inclination, but she did say that the doctor wanted to talk to me about it.  I hadn't showered yet, but I quickly grabbed my stuff and headed out the door. I was still living at home then, so I yelled up to my mom that the doctor called and my blood sugar was 24 mmol/L and as you can imagine we were all in for a shock, type 1 diabetes was the diagnosis.  I spent some time in the hospital and it never really dawned on me how much life was about to change for me. I wasn't upset like you'd imagine or you see in the movies.  I cried but it was brief and my fight or flight kicked into action. Looking back it is as if I knew that I was going to be O.K that diabetes wasn't going to be the end of me, but rather a new beginning unlike no other fresh start.

The first blessing was meeting Chloe from Connected in Motion. She played a huge role in how I took my diagnosis, probably more than she will ever know.  She was the first type 1 that I meant and when I saw how involved she was, speaking at events, running activities and having such a great group of friends with diabetes, I knew I wanted to be just like her. That is when I got involved with Connected in Motion and met a good chunk of the type 1's I know today. Connected in Motion also got me involved in physical challenges, something I avoided.  I began trying things that I had never imagined like obstacle races, triathlons (1/2) and fun runs.  I would credit Connected in Motion for encouraging me to get out of my comfort zone and try new things, which has impacted my life since in many ways.

The second blessing was for diabetes organizations like JDRF and the Canadian Diabetes Association.  The opened my eyes up to volunteering and participating in my community.  My first time speaking in public was because of an opportunity the Canadian Diabetes Association gave me. Following that I started doing more speaking events with both organizations in all kinds of places and events like Symposiums, and Camps.

The third blessing was by  means of a very odd google search.  I was looking to connect with others living with diabetes beyond my local community and I also wanted to send real hand written letters. I came across Krystal Boyea who was looking for something similar.  Now, if you've ever heard of anything more serendipitous, let me know.  Krystal and I sent hand written letters back and forth but also communicated online.  Little did I know how much of a roll Krystal would play in creating my diabetes 'portfolio' if you will.  Krystal is an outstanding leader in diabetes and has had many opportunities like myself, but the biggest opportunity came to me when Krystal asked me to climb Kilimanjaro with her.  That was the first time her and I had met in her person, a little hotel in Tanzania, Africa.   From paper, to Africa, to Australia, to Vancouver and Barbados - my friendship with Krystal will be one of the most thankful friendships I have in my life.

The fourth blessing comes from Jen Hanson. I met Jen through Connected in Motion. She is always smiling and if you know her, I just assume you love her because who couldn't love her!  Jen encouraged me to apply to go to the Young Leaders Programme run by the International Diabetes Federation. I am so thankful she supported me in the pursuit which gave me the opportunities to travel to Australia & Vancouver.

The fifth blessing is the Young Leaders Programme. Once I was selected, I didn't realize how impactful that programme would be. The people that I met from places around the world I had never even knew about.  The life stories that I heard from those living in places like Haiti and Zambia, I will never forget.  This programme is more than building a leader but it teaches compassion and gave me such an understanding for diabetes on a global level. I will forever be thankful for that program.


The sixth blessing comes from all of my supporters, friends and family that have supported my crazy ideas and passions for the past seven years.  Things like this blog, or the Type 1 Diabetes Meme Page, or T1 Empowerment, have been supported by so many and it makes my heart smile. I have never felt so much love, encouragement and positive vibes.  I am surrounded by people that will do anything for me and that without a doubt have made my diagnosis easier.

There is so many more blessins that have come from my diagnosis. I have been to California, Tanzania, Boston, Maine, Australia, British Columbia, and many others places around the world because of my diagnosis.  I have met so many outstanding individuals from all walks of life and made friendships that I know will last forever.  Now cheers to many more healthy years with type 1 diabetes.

Approaching Seven Years

It's hard to believe that this weekend will mark seven years of living with diabetes.  I want to say that I don't know where the time went, but to be honest, it feels like I have always had diabetes and I can imagine that when I am celebrating say, twenty years with diabetes that it will feel longer than forever.

When I think about the past seven years I think about all that I have accomplished in that time span. All the memories that I have made, all the people that have come and gone and those that have stuck around.  I also think about all the time I have put in thinking, crying, fighting, and struggling with my diabetes.

I think the fact that it feels like I have always had diabetes says a lot about the disease.  Diabetes takes all of you, it takes so much out of you sometimes that you can't focus on anything else. The endless carbohydrate counting, blood sugar checks, beeping, buzzing, site changes, low reservoirs, appointments, the list goes on.  Diabetes is relentless and that's why it feels longer than seven years.

But, what I have learned in the last seven years is that I am not alone in this.  There are so many others going through what I do on the daily, and I some days that is what pulls me through.   So, this Sunday, I will reflect on all that has been done to be where I am today in those last seven years, all the friendships I have made and all the opportunities that I have been blessed with.

Kayla