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 definition, monopoly 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)

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. 

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. 

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. 

The Collector

My name is Jamie, and I am a collector of diabetes artifacts. 

I have a Diabetes Museum, not in a formal display case or anything, but spread through the house. I do have a dresser of sorts in my dining room, masquerading as a normal piece of furniture, but it's stuffed with D things. I have a big plastic bin lurking, in the music room closet (that sounds pretentious, I realize, but really it is a very humble recording studio for Larry). And I have stuff stashed underneath the vanities in both bathrooms. 

I have old meters, lancets, cartridges and reservoirs, just in case. I even have an old meter dating back to 1988 (it still works on its original battery!). 

I have old pokers, and years and years of supply of lancets that will last long after I'm gone. 

I have an old pump, long out of warranty, and a few old supplies for said pump. 

It's like chronic illness. It's always there. My life has hung on these artifacts (well, except for lancets, but that's another story for another time)

These things have given me the information I needed to make life decisions about whether to eat, or if I needed more insulin. I have probably spent hours, days or longer considering my next steps based on these things. 

I can't part with these now worthless items. Because they represent a time and place in my life. They are - like it or not - a piece of me that I'm not ready to let go, and may never be.

... except for the lancets. I think I'm ready to part company with my lancets. Yes, that's what I'm going to do. Baby steps.

In the meantime, I am still a collector of diabetes artifacts, and my name is Jamie.

We can take baby steps to make a difference. We can do it many ways, including supporting, or even participating in the TELUS Walk to Cure Diabetes. 

Just like we sometimes need to take first steps to let go of things we hold dear, we can also make the choice to participate, support a family member, or any one of our T1D friends who are also making a choice to support the JDRF. 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. 

Pandora's Box of Numbers

I have something that's hidden away in a Pandora's Box. I'm going to keep it to myself because it belongs there. It's not that it's really any big secret. Not really. Some people share, and that's okay. My doctor knows all about it. I share it with my husband. And the Ministry of Health knows about it because they ask me to report it every year, because my insulin pump funding depends on it. 

Sure, I'll openly and probably overshare at times all about my fears, my anxieties and my successes. But the one thing that I won't share is my HbA1c. Again, not because it is in and of itself any big secret, but it brings out the worst in me. 

Click on image to find out more about
the 6th Annual Diabetes Blog Week

If you have diabetes, you know all about this number. This three-month blood glucose average represents a guidepost; a line in the sand that we jump over. Sometimes it's a personal goal. Our doctors gauge our successes, or our failures, to comply. (Comply? Don't even get me started).

Assertions at best, or judgments at worst are based on this number. To me, no matter how much I rationally know that I'm not judged on this number, it makes me feel bad when I don't reach my goal. It tells me that I've failed, even though many assure me that it is 'just a number' and that 'you are not defined by your number'. The reason I feel this way? In the 27 years that I've lived with diabetes, I have not once had an A1c considered ideal. I've had them go a little up, even down, but it's never quite right. 

An A1c is a moment in time. It doesn't tell the story about my efforts, my good days or my bad, and it certainly doesn't call out my successes. My 8.0 may have been coloured by sickness, or perhaps a series of free-wheeling low blood sugars chased by a bunch of stubborn highs.

When I see someone's 6.0, I'm happy, really I am, because it is a success. But by the same token, I don't know the whole story - your story. But when I see it, deep down inside I feel a pang of envy. I don't want to feel that way. It's just the kind of crazy thoughts that doesn't help anyone. So that will be my secret that I will keep in my Pandora's Box - envy, and its friend the HbA1c. 

So I won't share my A1c. I don't want anyone to feel bad because of their number, just as I don't want anyone to feel like I'm bragging about mine. I don't know your story. It's a funny thing - the same number can represent a success to some, while to others it represents a challenge. So it's best to leave it in that Pandora's Box.

I want to celebrate the real things. I want to celebrate real successes - like a Good Diabetes Day, or perhaps help you celebrate your successes, whatever they might be. 

In the meantime, I will keep it to myself, and just continue to do the Very Best That I Can.

We can change the face of diabetes. We can do it many ways, including supporting, or even participating in the TELUS Walk to Cure Diabetes. 

Let's change the direction of change by participating, supporting a family member, or any one of our T1D friends, or at least share the word with others. If you live somewhere else, look up your JDRF 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. 

I Can: Four Lessons

I think I can...... I think I can ...... I think I can

We remember the mantra of the Little Engine That Could. Little did I know, or even imagine way back when, that I am now that little engine. For every day, living with diabetes, I have been taught what it is to fail, and I also learn, again and again, that "I can".

When diagnosed with diabetes, I held the belief that maybe I couldn't. That perhaps life would be different than that life I envisioned. Certainly it was different. But as it turns out, not for the reasons I thought.

Lesson 1 - Diagnosis and Life Goes On

Glucometers: 2010 vs 1988

In 1988, I was 27 years old, two years into a marriage, and ready to start a family. Then the diagnosis. Certainly we couldn't. But after only a few months, I was expecting, and facing a huge learning curve for managing equally crazy blood sugars that come with pregnancy. It wasn't easy, but I was determined, and was armed with my meter - a big brick of a thing, that dutifully reported my blood sugar. It was a scary time, but I was young and determined. There were lots of doctor appointments and worry, but we had a beautiful - and healthy - daughter, who still shines today. 

I have gone through many life changes, I'm happily married to a wonderful, understanding, supportive, and (above all) patient husband. I have an interesting job. I've found my voice as a diabetes advocate. I'm a librarian of my community's Little Free Library and, of course, I'm a blog writer. How far I've come!

Summary: I Can have a healthy child and a great life. It just takes some determination and chutzpah. And yes, I've also got a healthy sense of humour. It gets me through the day. 

Lesson 2 - Living Life Better

Eating what I like #takethatwendell ;)

Fast forward 19 years. Insulin therapy had changed - from 2 needles a day to that of multiple daily injections. It was more advanced, but also very demanding, and exhausting. I had read about the insulin pump, but just couldn't imagine being hooked up to anything all day, everyday. There was no DOC (Diabetes Online Community), and I had only connected with a few groups that focused on Type 2 diabetes. 

But I was supremely irritated by the constant requirements of MDI. The guessing game of what the long term acting insulin might be doing, causing seemingly random highs and lows. I had heard about the flexibility and the lifestyle change it could bring. But the decision to pump changed a lot for me. Gone were the early days of hiding in bathrooms to inject, not wishing people thinking I was some sorry heroin addict (perhaps misguided because I looked nothing like an addict).

Gone were the days of rigid eating schedules. I also didn't count carbs at the time, so the pump - and counting carbs - allowed me to eat just about anything I wanted. But most importantly, it has brought my BG numbers lower, admittedly far from perfect, but to a number that both I - and my doctor - can live with.

Summary: I Can live a better life with my insulin pump.

Lesson 3 - Learning Again That I Can

A pretty good day for me - a no hitter!

In 2012 things changed for me. I had a bad low while driving and was diagnosed with a very scary complication - hypoglycemic unawareness - the inability to feel any symptoms of low blood sugar. I still wonder why no doctor before had mentioned it. I had never read about it, and believe me, I had done a lot of reading. I knew all about loss of limbs and dire warnings of blindness, and even early death. I knew a lot of scary stuff, but this one hit me hard. 

I lost my license for several months, which was a real challenge living in a one-driver household, in a small town with no local transit. It was a blow to me when I realized I couldn't even pick up my mail from the post office without my license - my ID was gone. And so was my independence. It was a blow to me because it was first a lesson in 'I can't'.

Although CGMs were common in the US by 2012, not so much here in Canada. But what I did know is that the constant monitoring afforded by the CGM would be invaluable. I worked hard over those months with my doctor, and ordered a CGM. What a difference it has made. The CGM tells me what my body can no longer tell me. Where I used to have obvious signs of low blood sugar - weakness, sweating and facial numbness - I now make it a habit to check of my trends (one arrow up, two arrows down)... whatever is going on, I can now respond when I still have my wits about me to do something. I can be proactive, instead of reactive. How cool is that?

Summary: The CGM has brought me from a place of feeling I couldn't, back to I Can.

Lesson 4 - Empowerment by Getting Ahead of the Game

Nightscout: Data in the Cloud

Fast forward a couple years to December 2014, when I caught wind of a growing movement to free diabetes data into the cloud. At first I didn't see the point. My data was on my CGM, so why would I want to do something like this? The problem was I was missing some warnings. Winter coats, busy train stations, or just not hearing it. 

Nightscout - a project that freed diabetes data from devices like the Dexcom and put it into the cloud - brought my trends and my data right to my wrist. I could just glance at my watch or get subtle haptic tap on my wrist to let me know what is going on. (For more information, you can read all about it for yourself at Nightscout.)

With just a cheap cell phone, a tiny data plan, and a Pebble watch, I was able to jail break my data. It's in the cloud now, and I haven't looked back. It has proven itself by saving me from severe lows several times because of its diligence and my immediate awareness of what is going on, even in noisy busy environments. 

Even better, my support network - my husband - can just check his app at home to see what might be going on. This was huge for him because he now has assurance that I'm safe, without having to wait for me to text him to tell him so. With Nightscout we are ahead of the game. 

Summary: I am empowered by having open access to my data. I can now say, I Can.

And now what?

I can hardly wait for my next discovery - my next lesson in "I Can".

Will it be technology like the artificial pancreas that is being tested, and promises to take over the work that I now do?

Will it be smart insulin which will release only what I need, when I need it?

Or is The Cure just around the corner?

I won't hold my breath for any of those things, because you just never know what is around the corner. 

But I know I Can.

Just like that Little Engine That Could.

We can change the face of diabetes. Just as I've learned and re-learned the lessons of I Can. We can do it many ways, including supporting, or even participating in the TELUS Walk to Cure Diabetes. 

Let's change the direction of change by participating, supporting a family member, or any one of our T1D friends, or at least share the word with others. If you live somewhere else, look up your JDRF 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.