Saturday, May 30, 2015

Diabetesopoly: The Reboot


I'm late. I'm late for a very important date.
No time to say hello goodbye
I'm late I'm late I'm late...
~ The White Rabbit (words by Bob Hilliard)

I've no excuses for such tardiness, but here I am, late again. A low blood sugar can be a good reason for being late, for example. But not this time. Not for my last post in the 6th DBlogWeek series

For this last topic, I've decided to take a wildcard because the 'official' topic tasks me with choosing a favourite blogpost posted during DBlogWeek. You may have heard this from me before, but I struggle because my favourite may not be yours. For you may think that the one I choose is superfluous (I've always wanted to use that word, so there you go). 

What's important is your journey of discovery to find a blog post that speaks to you. There are so many wonderful, insightful, and creative blogs out there that have been written by equally brilliant people. I invite you to check out each of the topic pages to discover them all for yourself.

The theme I have chosen is to Personify Diabetes. 

Backing up a bit, when I was cleaning out my desk last week to move to another office location, I found something that I worked on for DArtDay in February 2014. To be clear, I am not artistically inclined, not in the traditional sense. I once was tasked to draw an amoeba in grade 9. I was told under no uncertain terms that it did not look like an amoeba, and that I had to go back to the drawing board. (I personally think that was harsh, but it did help me prepare for living life with diabetes hah!)

So with this in mind, for that DArtDay project, I opened my trustworthy spreadsheet program and re-created everybody's favourite (not-so-favourite?) game - Diabetesopoly. Diabetes is rather like living a competitive game. 

DEFINITION of 'Monopoly' A situation in which a single company or group owns all or nearly all of the market for a given type of product or service. By definitionmonopoly is characterized by an absence of competition, which often results in high prices and inferior products.

Can we draw a comparison here? Sure we can. 

So I decided now would be a good time for a reboot to my first version which I featured in a post in February 2014. It's amazing how quickly some things have changed in that short period of time, especially in technology. With that in mind, the reboot - Diabetesopoly v2.0 - now features some new 'properties' and 'commodities' on the board. 


As you play the game, whether or not you live with it or love somebody who lives with it, you can see how living life with diabetes adds a whole layer of challenge to 'normal' people life. It also explains why I'm late for so many things. But late or not, this game is intense. 

Maybe for my next theme day, I'll take on the Game of Life (with Diabetes), or perhaps Snakes and Ladders. (Ha! I like that one)


Saturday, May 23, 2015

Looking back and looking forward

It's hard to believe that I have been blogging for 7 years. When I first started this blog, I didn't know anything about a Diabetes Online Community. I barely knew knew what a blog was. I just knew I created a space where I could write stuff, felt that I had something to say sometimes, and I had a bunch of furballs in my life, so this blog was born. 

It didn't have any particular direction at the time, and sometimes it still embodies that randomness. At first I told the stories of whatever came to my mind, but it was rooted in family, and especially all of our Furballs. Over time, it has evolved into what you see today.  

This is a very late entry for DBlogWeek, was supposed to be posted a week ago, but everyone who knows anything about me, I am always late, but I have good intentions.

Deviantart
This day's topic is to write about a favourite sentence or blogpost, which I struggled with because I put my heart and soul into each one. So how could I possibly choose just one? Yet this is my theme for today, so I will put on my thinking cap and do my best. 

Storytelling is an age-old art to share the human experience. In a post called, "That thing you are doing", I think I captured my thoughts on why I put everything out there the way I do. Writing helps me work through whatever is going on in my life. But when I share whatever it is, I hope that it somehow speaks to you in some way, and perhaps inspires you to one day share your own story, in your own way. Not only does this passage carry the core of why I share my stories, it also ends with a quote that I believe would make our world just a little bit better if we lived our lives with this as a guide.

Whatever it is, whatever brought you here, and however you get to where you are going, you will take away a new fresh perspective all your very own. And one day, you may find yourself sharing your own take on things with others - your partner, your extended family, or your best friend, over a cold lemonade and a package of Oreos. And maybe your sharing with them can expand their world just a little bit too as they go on their own life journey.  
And that makes you an advocate too. 
It doesn't take much. Just as Mahatma Gandhi said, "Be the change you wish to see in the world". 
From "That thing you are doing" (August 2014)

So that's my favourite post, at least at this moment. But I'm betting it's not necessarily yours. because it's the posts that speak to you that really matter - the ones that give your heart a lift, or perhaps give a shot of perspective into the mix. That's all I really want.

Looking back gives a view of where one has been, and tells a story of how one has arrived in the present. That's what this assignment was about, or at least what I was thinking. But what's important, is that I now choose to look at what might be in the future. And the future holds change.

I want that, and I want to be part of a Change, whatever that may be. 


Monday, May 18, 2015

Food and the 100 Acre Wood

My relationship with food is complicated. But I think Winnie-the-Pooh can help de-construct my relationship.

What I like best

"Well," said Pooh, "what I like best," and then he had to stop and think.  Because although Eating Honey was a very good thing to do, there was a moment just before you began to eat it which was better than when you were, but he didn't know what it was called.
~A.A. Milne

I love food. Always have. I love pasta and rice. I love chips. I love chocolate and I love cake. But there are consequences when you have diabetes. Blood sugars spike; sometimes for several hours afterwards, regardless on how accurate the carb counting was, or the increase in a temporary basal (background) insulin. So I (sometimes) choose moderation. I first stop and think, can I eat this right now? And if I decide I can, I do so, sometimes with moderation, and sometimes with abandon. I may pay the price, but I do so with thought. 

There is a caveat to that, in that some foods are my trigger foods, as hunny is to Pooh. These foods are not in our home. Things like Oreos. One low blood sugar, one moment of a 'panic' kind of eating as two arrows down show on my continuous glucose monitor, and most of a bag can be demolished. So I don't buy them. I make sure we have glucose tabs on hand to take care of those insane moments. 

What about lunch?

It is more fun to talk with someone who doesn't use long difficult words but rather short easy words like, "What about lunch?"
~A.A. Milne

What about lunch? Dinner? Snacks? Not just because it's time. Sometimes it's because I have to. Blood sugars rue the day. High, low, or in between. I'm always aware of the question lurking in the back of my mind. Do I need to eat? What should I eat? 

Ten pots of honey...

... and when the whole Escape was finished, there was Pooh sitting on his branch dangling his legs, and there, beside him, were ten pots of honey....
~A.A. Milne

Food can be like medicine. Lows blood sugars, and plenty of them have taught me to consider the impact of food on my blood sugars. What 4-5 glucose tabs, test, and if necessary, another tab or two, and test again. Sometimes I choose ice cream. Because I can, and it tastes good. Not always a good choice, but it is a delicious choice.

Getting thin?

"How long does getting thin take?" Pooh asked anxiously.
~A.A. Milne

I used to care, but I don't anymore. I'm not saying I won't ever lose weight, but by now my expectations have been set that I won't ever get thin. On most days, I'm comfortable in my skin. Ask me tomorrow, and you might get another answer, but as long as I have a special someone - a Christopher Robin to care for me and who will read me stories in the meantime - I'm not worried about it. 

What's for breakfast?

"When you wake up in the morning, Pooh," said Piglet at last, "what's the first thing you say to yourself?"  
"What's for breakfast?" said Pooh. "What do you say, Piglet?"
I say I wonder what's going to happen exciting today?" said Piglet.  
Pooh nodded thoughtfully. "It's the same thing," he said. 
~A.A. Milne

Suddenly food isn't so complicated anymore. Sometimes living life, and eating food, is just like eating honey in the rain or being stuck in Rabbit's hole. 

You just never know what surprises are waiting. Sometimes good, and sometimes not-so-good. But there's always another waking up, another breakfast to look forward to tomorrow. 



How wonderful it would be if food could be eaten, with no consideration to be given to one's blood sugar. How wonderful would it be if no one had to deal with the short term challenges of low blood sugars, or the long term challenges of complications due to high blood sugars. Organizations are working on this, and funding brings research into new horizons, previously unimagined, like the Artificial Pancreas project or other new technologies. 

We can make a choice - to participate, support a family member, or any one of our T1D friends who are also making a choice to support the JDRF. We can do it many ways, including supporting, or even participating in the TELUS Walk to Cure Diabetes

No matter where you live, the JDRF is working to support you, or those you love and care for who live with diabetes. Look up your DRF chapter and find out what they are doing, to make living life with diabetes just a bit better for all of us. 

This Walk raises critical funds for research focused on curing, treating and better preventing Diabetes. I am all about that! 

And is it a fit? I'll let you figure that part out, and I'll just continue writing, and hope what I share with you here gives you something to reflect on. 

Sunday, May 17, 2015

Labelling the Change

No matter where we are in life, change happens. Life shifts like sand. Never the same one day, as we move into the next. A diabetes diagnosis is like a rip tide. One day you are standing on firm ground, and then everything shifts - everything you thought you knew, is different. Life is full of changes - a best friend moves away, a family member dies, a new baby, a move, and a diabetes diagnosis. 

Good or bad, change happens. Good or bad, our lives are impacted by change. 

I thought I had experienced it all - a doctor who declared I would die an early death from kidney disease if I ate low carb to a hygienist who was hesitant to clean my teeth because my blood sugar might be too high (it wasn't). People have offered me advice with good intentions to help - from organic foods I should eat to cleansings to rid myself of the toxins that must have made me this way. 

It is all rooted in misconceptions, which are fed by media. The media has labelled me as Diabetic, and by extension, people who want to help, also label me. It's not who I am, and whatever they are offering is based on misinformation. So I educate. I share what I know about living with diabetes. I continue to do my best, and I don't worry about it. 

But when these labels feed the medical community, this is where things go too far, and change must happen. Today's story is about The Wound Clinic. 

What an awful name. The Wound Clinic. It even sounds nasty.  

Even the thought of going there for my infected toe made me feel uncomfortable. In my minds eye, I imagined terrible oozing wounds. Certainly my toe seemed insignificant. 

This Wound Clinic is part of a large teaching hospital. Residents, interns and students spend terms there and learn whatever there is to learn about such treatments. I was interviewed by more than one of the residents, each with their agenda of finding out something about my situation. So far so good. However, when The Doctor arrived, the world shifted. My role shifted from Jamie, The Patient With An Infected Toe (which isn't great, by the way) to The Patient Who Presents With An Infection In Her Left Great Toe. As the presentation wore on, The Doctor offered Her Observations, and The Residents listened with great interest, I became Invisible. I had an Infected Toe, and all in the room listened to The Doctor, and whatever wisdom She offered. 

When I finally dared to ask a question of The Doctor, She scoffed, and told me "of COURSE you have neuropathy! You are Diabetic."  So now not only was I Invisible, I was now Diabetic too. 

This was the defining moment. I also became The Victim. I was the Victim of the attitudes in the place that was supposed to help me. Everything I thought I was - nice, friendly, mother, community member running a Little Free Library, diabetes advocate, and yes, I've lived a quite successful life with type 1 diabetes - it meant nothing. In a heartbeat everything shifted. I became a Victim. I was labelled by those who knew nothing about me.

This needs to change. 

If our medical professionals - whoever they are - doctors, nurses, interns, medical students, dieticians, dentists, retinologists, or even our institutions are going to help us, they must first drop the labels, whatever the label might be. For the label does not define the person they are treating. They bring knowledge and expertise to the patient. I may be the patient, but I am first and foremost, Jamie who has a Life Out in the Real World. 

Talk to me. Call me by name. Look me in the eye. And never EVER be judge me, or worse, scoff at me. If I need information, then give me that information. For that new knowledge will empower me, to perhaps make changes in my life, or help me to reset my expectations. 

It has taken me several months to figure it out - to get some clarity about what happened that day, and to rise above that appointment. I was devastated. I was insulted and offended. 

You may ask, why didn't you say something at the time? Why didn't you tell the doctor how you wanted to be treated. Why did you let yourself be The Victim? 

Fair question. The simple answer - I was blindsided. I had never been in such an environment where I was so Invisible. As I was trying to process what was happening, I felt like I couldn't say anything. It was oppressive. It was bigger than me. I was Victim. All my emotions were dangerously close to the surface and I felt powerless to do anything about it. 

But it's going to be different next time, for there will be no next time. I've played and replayed the scenes in my head. Next time I will recognize the signs. I will not be too intimidated to speak out. I will insist on being spoken to, not about. I will be called by name, my questions will be answered, respectfully and patiently. 

I have decided that I will not be The Victim anymore. If that means I have to speak out, or even leave the room, I will do that. 

I am part of the Change. 

I realize now, that it is my responsibility to change. And if I change, I can help others to change. By changing my attitude, I can share what I'm feeling, to help others see the change they need to make. Or I can choose to leave them behind. It is my choice. It is my responsibility. 

We define our labels in life - wife, mother, hard worker, lover of furballs, librarian - whatever it is, it is our choice. But that does not give others the right to assign labels to use that do not define us by our medical conditions. We are all human and we need to be mindful of our actions and our words. But where it's necessary, we need to take matters into our own hands and help that happen. 

It seems like such a basic thing, so let's start to make changes. 


Do unto others as you would have others do unto you.
[Matthew 7:12]



We have the power to change our attitudes and our behaviours. We can support the changes that are going on around us, just as funding brings research into new horizons, previously unimagined, like the Artificial Pancreas project or other new technologies. 

We can make a choice - to participate, support a family member, or any one of our T1D friends who are also making a choice to support the JDRF. We can do it many ways, including supporting, or even participating in the TELUS Walk to Cure Diabetes

No matter where you live, the JDRF is working to support you, or those you love and care for who live with diabetes. Look up your DRF chapter and find out what they are doing, to make living life with diabetes just a bit better for all of us. 

This Walk raises critical funds for research focused on curing, treating and better preventing Diabetes. I am all about that! 

And is it a fit? I'll let you figure that part out, and I'll just continue writing, and hope what I share with you here gives you something to reflect on.