Flying Furballs

It's kind of a big deal

noreply@blogger.com (Jamie Naessens) — Tue, 15 Nov 2016 03:32:00 +0000

Canada Post Millennium Collection stamp in 2000

It was 125 years ago, on November 14th, 1891 when Sir (Dr.) Frederick Banting was born in Alliston, Ontario, not far from where I'm sitting right now. Today we celebrate World Diabetes Day, in part because we reach out to others to educate, but to also acknowledge that because of Banting's ingenuity, so many people with diabetes are here today.

Before 1921, a diagnosis of diabetes was grim. And even though some complications of diabetes might still be grim, improved technology and health care has improved lives of those of us living with Type 1 Diabetes (previously known as 'Juvenile Diabetes').

To honour Sir Banting's discovery, I thought I'd share some fascinating historical facts with you. If this were one of those somewhat annoying Facebook posts that you see in your timelines, the subject line would be “5 things you didn’t know about the discovery of insulin”. (You may notice I decided not to go down that road, where if you did click on such an 'article', you might also expect to be treated to some snake oil cure for diabetes. And this isn't that, I promise).

So here we go...

Banting had an idea reading a research paper at the end of October 1920. He secured some lab space from J.J.R. Macleod at the University of Toronto in November where he worked with Charles Best, a medical student. After a lot of hard work and long hours, the resulting refined hormone insulin was given to a young boy in a coma at Toronto General Hospital in January 1921. The time it took for this entire process? In case you missed that timeline, it was only 2-1/2 months!
Banting, Best, and Macleod signed over their patents for $1 each to the pharmaceutical company Eli Lilly to produce insulin to make it available to all people, everywhere. Where Toronto didn't have the manufacturing and distribution resources, this company did. Although insulin has been refined substantially, it is still the same hormone as it was invented 95 years ago.
Banting and Macleod were awarded the Nobel Prize for Medicine in 1923. Banting almost refused the award because it didn't include his partner, but instead shared his monetary prize with Best.
Banting was a war hero in WWI, and died in a plane crash in WWII.
Banting was also an acclaimed painter, and was a close friend of Group of Seven painter A.Y. Jackson.

So, World Diabetes Day is kind of a big deal. It is remarkable what started with one man's idea and some ingenuity, it transformed into a discovery that has saved countless lives, including my own. And how cool is that?

Google Doodle - November 14, 2016 (95 year anniversary of discovery of insulin)

Diabetesopoly: The Reboot

noreply@blogger.com (Jamie Naessens) — Sat, 30 May 2015 18:20:00 +0000

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

noreply@blogger.com (Jamie Naessens) — Sat, 23 May 2015 18:36:00 +0000

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

noreply@blogger.com (Jamie Naessens) — Mon, 18 May 2015 20:59:00 +0000

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

noreply@blogger.com (Jamie Naessens) — Sun, 17 May 2015 04:01:00 +0000

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.

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

noreply@blogger.com (Jamie Naessens) — Fri, 15 May 2015 02:31:00 +0000

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

noreply@blogger.com (Jamie Naessens) — Thu, 14 May 2015 02:12:00 +0000

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

noreply@blogger.com (Jamie Naessens) — Wed, 13 May 2015 03:46:00 +0000

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.

Running Against the Wind

noreply@blogger.com (Jamie Naessens) — Wed, 25 Mar 2015 03:47:00 +0000

I am honoured that I have been asked by JDRF Canada to be part of their Blogger Network. When they reached out to me, I couldn't get over the fact that they even found me. But I also know that as a person who happens to blog, who has lived with Type 1 diabetes for a very long time and also live in Canada, that it could happen, and then it did. :)

Living with diabetes is like running against the wind.

Sometimes living with it is like being brushed by a gentle breeze - the calm days that quiet our minds, when our blood sugars behave and we can exist in the diabetes happy zone, almost like 'regular' people.

There's a whirlwind of doctors - specialists and general practitioners - who endlessly discuss our A1c's, our eyes, feet, and other body bits that can be affected by diabetes, as we worry our bodies might betray us as we get reminded about what we should be doing, and what we shouldn't.

Credit: kubcia

Diabetes can be like a tropical storm, which can batter you, throw things at you that you didn't see coming, which leave marks like unseen bruises.

Low blood sugars pop up at unexpected moments. Sometimes we can see them coming, and they leave us numb and confused. They wake us up in the middle of the night or keep us up, not letting us get the much needed sleep, ironically because we were up the night before, dealing with yet another low.

There's the frustrating high blood sugars, which despite throwing insulin at them, routinely mock us, laugh at us like those creepy little gnomes that live in people's gardens. Then, just to add a little insult to injury, because as we overcome the high with insulin to attempt to get those numbers down, because the system is imperfect, back down to lowland we go.

Don't be disheartened though, for diabetes gives us resilience. All of these winds have made us who we are.

If we each had a magic mirror, and could wish away all of those winds away from our pasts, and whisk away all of our challenges, it would also wash away the discovery of how strong we really are, and who we have become. Without that, would we be who we are today?

It's not all about those storms. But I've learned over the years, just as those gentle breezes shift, diabetes also shifts. I continue to get by, to survive, and I will continue my journey to become a better and stronger person, while running against the wind.

Sometimes I go about pitying
Myself,
While I am carried by the wind
Across the sky. ”
~ Frances Densmore

We can change the direction of the wind. We can do it many ways, including supporting, or even participating in the TELUS Walk to Cure Diabetes. Our very own DOC (Diabetes Online Community) member, and Canadian, Alanna Swartz, is stepping out to make such a difference.

Let's change the direction of the wind 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.

A Matter of Perspective

noreply@blogger.com (Jamie Naessens) — Sat, 25 Oct 2014 23:29:00 +0000

A conversation that I recently had:

Pharmacist: You are on only two medications! That’s amazing!!

Me: Actually, it’s three.

Pharmacist: ???? Two.

Me: Don’t forget the Insulin.

Pharmacist: Oh, right!!! But you are like a rock star diabetic! Nobody is on just two meds!

Now, it did feel good to be called a rock star diabetic. Because nobody has ever EVER called me that.

Credit: Valerei

This conversation came 26 years - almost 10,000 days - after my diagnosis, and it did make me feel kind of warm and fuzzy inside. But I would bet there are lots of PWD - People With Diabetes - who are not on other meds, like children for example. But I’m not going to argue that point.

Because what strikes me is this:

Has insulin become so ubiquitous in our culture, that it is no longer seen as a medication with its own challenges?

Is this why people shrug diabetes off? Is it why people tend to think that all you need to do is eat well, take your insulin, take your meds, and all will be well?

Does it take a diagnosis of diabetes, and living with diabetes for a while to understand that insulin is not a cure? That even with the modern advances of better insulins and technology, that there are still many challenges for those who inject or pump it everyday?

Insulin is not a cure, and it is not easy to manage. But I do my best to manage it. Every day.

And that makes me a Rock Star. And if you are a Person With Diabetes, that makes you a Rock Star too.

So when you're not feeling much like a Rock Star, and it will happen from time to time, remember that it's a matter of perspective.

When it rains, look for rainbows

When it's dark, look for stars

Esther Comau

That thing you're doing*

noreply@blogger.com (Jamie Naessens) — Sun, 24 Aug 2014 21:16:00 +0000

*The full title of this post is actually "That thing you're doing right now, and don't even know it", but for Twittery reasons, I have shortened it. :)

An advocate cares.

An advocate wants to affect change.

An advocate wants to engage, influence, and chart new paths in churning chaos.

Advocates are all that, and none if that. It's like saying all ALS supporters want to have buckets of ice water thrown on their heads. There are as many types of advocates as there are people.

I call myself an advocate, because I speak what's on my mind, usually about diabetes but not always, albeit I often edit it just to keep it in the realm of being family friendly ;)

~Mahatma Gandhi~

But far from the advocacy 'stars' (bless them!), I am a small tiny star just trying to make a tiny difference. I choose to share my thoughts about diabetes in a blog, on Twitter, and with my co-workers if they ask me about it.

When I see others struggling with diabetes, or with any other challenges online, I break out of the mindset that "they will work it out" or "Somebody Else will help them", and I will offer suggestions, or if nothing else, give them a little virtual pat on the shoulder if I don't have an answer.

I am sometimes inspired to write letters to organizations, but not often, because I usually end up feeling my efforts seemingly go unnoticed. I do when I think it's important though, and I do harbour a little hope that somebody out there is sharing that email with others, exclaiming, "See this??! Isn't this brilliant??!"

All this being said, I'd also venture to say that you are an advocate too, because you are reading this blog post. You probably have read some other, much more inspiring posts and commentary than this. You have come down a different path to get here, whether it was looking for insight, looking for clarity, or just a little curious.

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.

Hacking Life with Diabetes

noreply@blogger.com (Jamie Naessens) — Sat, 17 May 2014 02:09:00 +0000

So many people are just so clever, and have so many great ideas. Check out right here for some wonderful ideas.

I won't try to compete, and I encourage you to check them out. But I do have one hack to share.

You know all those lancets hanging out in the bottom of your diabetes supplies? You get 10 of them with every new meter... that's like 10 years worth (well, in my world it is anyway).

So what to do with all those extra lancets? Whenever you get a sliver, it makes an awesome sterile sliver removal tool when you don't have tweezers hanging around.

You're welcome. :)

This is my submission for Diabetes Life Hacks - #DBlogWeek Day 5. I submit we should give more respect to the lowly lancet. It can be seriously useful. Nothing worse than a sliver... except maybe a paper cut, but I've got nothing for that.

Rising from the Ashes

noreply@blogger.com (Jamie Naessens) — Fri, 16 May 2014 03:21:00 +0000

Closely related to yesterday's post about dealing with emotional crises related to dealing with diabetes, either real or imagined, today I am examining what helps me get through the day. Not just any day, but a hard diabetes day. But there's a little more I can share.

Diabetes is hard, and sometimes it is frustrating and stupid. One is supposed to look for patterns and trends in the midst of chaos. One way I deal is by trolling the social media feeds - a world filled with pretty Pinterest quotes and Twitter cranky cat memes. It works for me because it gives me hope for a reset and it's a moment to forget. I reset. I can start over again.

But sometimes it helps to put it in my own words. What better way to do it is a Mirror Mantra. Check out Mike Lawson's wonderful initiative - it's a great way to remind ourselves of stuff we should remember). But here I've decided to share my own.

Tomorrow is another day :)

It's like a new day rising out of the ashes of the old. Rather dramatic, but I think it works well. For certainly diabetes inspires a certain kind of flair worthy of such drama :)

This is my submission for Mantras and More - #DBlogWeek Day 4. And seriously, I believe that without ice cream, there would be darkness and chaos.

Smile like it doesn't matter

noreply@blogger.com (Jamie Naessens) — Thu, 15 May 2014 02:38:00 +0000

For those who struggle with any kind of chronic condition, it is probably safe to say that they have struggled with the emotional side of dealing with it.

For the most part, I carry on like everyone else. Diabetes is a fact of my life, and I just deal with it. But sometimes things do get me down. It happens to many people at one time or another, and because diabetes is such an in-your-face, frustrating and annoying condition (or disease if you rather), it is often front and centre of the issues. I can tell you at a high level what gets to me about this. Here, let me list it out for you:

Helplessness
Dependence

And luckily (for me), a couple of things seem to work:

Smile like it doesn't matter
Distraction

I can deal with a lot of other crap pretty much head on. I get frustrated, I rant, rave, and sometimes even throw a hissy fit about things. And then I either do something about it, or move on. Often both.

But when something leads me to feeling like there's absolutely nothing I can do about something, complicated by a feeling of dependence, then that brings me to a dark place. It is a flat place, where laughing and even being civil can be a challenge.

What are these things that can lead to this all-pervasive feeling? It can be any number of things, but it is often headed up by bureaucratic nonsense that one can do nothing about it, but ride things out.

I admit that sometimes this feeling may or may not even be of my own making. For all I know it could live solely in my mind. But when I'm in that helpless place - there's nothing to do but to ride it out. My husband hears a lot about it, but I'm the type of person that let's things fester, and it often plays out in less than-nice ways. But he is amazingly supportive nonetheless, and that's just what I need when I get in those dark places.

Then as time goes on, things either become normal or a new normal starts to become more comfortable, and I start to see the brighter side of things. Often it is just the realization that things are not so bad, and that I'm surrounded by supportive family and friends, who help me to heal, even if they don't realize that they are helping. I think sometimes, if I just start acting like things are normal - that I am normal - starting with my family and friends, that I will one day be just that.

But for me, I look at it if you start smiling, you actually start to feel happy. That, and a little distraction, like that of getting through life, going to work, remodelling the kitchen, painting the family room and playing chase the kibble with the cats. That helps too.

I'm not suggesting that what works for me, might work for others. I understand that a lot of people struggle with very serious depression, and need to seek out help from their doctors and other support networks.

But this is me. And maybe it could work for you too.

Yeah, all that, and then I eat ice cream. Because I can, and ice cream makes me feel happy.

This is my submission for What Brings Me Down - #DBlogWeek Day 3. And seriously, I believe that without ice cream, there would be darkness and chaos. For the record, Santa's Cookies and Cream ice cream is the best ever (seriously Google, you let me down. What do you mean you couldn't find an image of this ice cream. Really?!!)

High Low

noreply@blogger.com (Jamie Naessens) — Tue, 13 May 2014 20:20:00 +0000

High, low

Medium, slow

Jolly old peppers

More, less

Some more finesse?

Never knowing, always a guess

Up, down

All around

Roller coasters, playgrounds, numbers abound

This is my submission for Poetry Tuesday - #DBlogWeek Day 2. I can't say that I was a poet, and didn't know it. I mean to show no disrespect to the bonafide poets out there.

It's All About Communities

noreply@blogger.com (Jamie Naessens) — Tue, 13 May 2014 20:10:00 +0000

I've spent a lot of time recently reflecting on what things matter to me. If one were to read this blog, one might think that diabetes means a lot to me, and true enough, it does. I think that as we read the many amazing blogs written by amazing people, many of which can be accessed through the #DBlogWeek hashtag on Twitter (or join in the blogging fun yourself), one can easily get this impression.

Recently there has been a loss in our lives, and this sad event has led me to reflect on what really matters. For me, first and foremost, it's family (and yes, I include my fur family as well). It's about friends. And it's about community.

This post is about community. And there are many kinds of community, but it all comes down to taking care.

Our neighbourhood community is a place where people come together to raise their children, a comfortable place to come home to after a long day's work. After watching some bored kids last summer, I built a Little Free Library which now sits at the edge of our yard. To this point, it took a community of believers - business people in our area - who helped make this happen in the first place. Because I reached out, they donated the box, some books, and effort, because I do not have building skills!

But now I've seen neighbours visit from blocks around, to 'borrow' books. I've met many new people, and the LFL has become a conversation starter of sorts. People visit and might drop off a book or two (or an entire Danielle Steel collection!) for others to enjoy. I've seen little kids come by, bookbags in hand, with a mom or a dad. Older kids excitedly show their other friends. In only a few months, this little box is now a touchstone in our neighbourhood, where kids and adults come together to discover (and rediscover) the love of reading.

If you have found this blog post, you are likely already familiar with the Diabetes Online Community (otherwise known as the DOC), and it is important to me because when I have questions, want to vent, or need support, the DOC has been there for me.

It is a virtual place - a social media phenomenon, but not in any one place. On Twitter you can find it by searching hashtags like #DOC or #dsma, but there are many more (just ask if you want to know more). There are diabetes community websites (like TuDiabetes or Glu), and blogs like DiabetesMine sharing experiences and information. It is made up of many people from different backgrounds, divergent interests and many countries come together to ask questions, support each other, share information, raise awareness, advocate, laugh at some things, and offer a kind shoulder to those who are hurting.

We should be aware though, that our communities need care. As much as they are a way to come together and a uniting force, they can be divided.

Just last week, I had come home to my Little Free Library to find that somebody had launched a rock through its little window. Instead of being disheartened by the disrespect (well, I was for just a moment), I cleaned up, took the opportunity to re-organize the books. I also discovered what one can do with a large Ziploc bag and some packing tape to repair it to it's almost former glory. It's back in business, and when I get to the hardware store again, I will be able to retire its Ziploc.

When we deal with people - as with the DOC - as much as social media encourages talking, we also need to remember to take a moment, step back, and just listen. Over the past year, I've made the mistake of not listening, and have lost a friend. We need to keep our minds open to other viewpoints, an eye out for those struggling, and especially for those who may be feeling lost or abandoned. Sometimes it is a lone voice - a single tweet. We should remember to reach out with a kind word.

Also we need to remember that as a group, we are quite a force to be reckoned with. Our collective voices have power, and we've certainly been noticed in certain circles. We can harness this force for the good, and I hope we continue to do so. But we cannot forget the smaller voices out there.

One day, long ago, I was that small voice, and now I'm part of a community that is larger than me. I'm proud to be part of it, but it always need to be looked after.

Just like that Little Free Library on our front lawn.

The Little Free Library opens for business!

This is my submission for Change the World - #DBlogWeek Day 1. Although I don't expect to change the world, but if I can just reach out to a person or two along the way, I will have succeeded.

Leaving Pawprints Behind

noreply@blogger.com (Jamie Naessens) — Tue, 13 May 2014 19:19:00 +0000

Dear Rocky,

You were a good cat. You were one of the inspirations for this blog. You had a big personality, and a bigger heart, even if you didn't always show it.

May you find the things that made you happy, like:

Lots of things to push off the table onto the floor like plastic fruit, diabetes supplies and satellite radios
Drinking water from Mom's water glass
Daily treats of chicken or salmon 'juice'
Someone to pick you up to 'show' you where your food is on the dresser
Finding bare toes to nibble (see 'chomp') on
Rubber bands to chew
Twist ties to chase
That toy on a spring and stand that you liked to drag upstairs
Kibble treats skittering across the basement floor to chase
Ankles to rub against (but just barely touching, because actually touching is uncomfortable you know!)
Finally, here's hoping you can come and go wherever you want - whether it be the other side of the door (why is it you always seemed to be on the wrong side of a closed door?), or go outside to roam as you wish

Things are sure quiet around here. We miss you and your little bunny puff of a tail, your big voice, your bigger personality, and all that made you special.

Your pawprints have left an indelible mark on our hearts.

Rocky

May you Rest in Peace

March 1, 2003 - May 7, 2014

Life is a Highway

noreply@blogger.com (Jamie Naessens) — Fri, 18 Apr 2014 19:05:00 +0000

Life is a Highway… What a great driving song!

It is also a great metaphor for living life – and driving – with diabetes.

Despite the temptation, and except when we are driving on the autobahn, most of us try to stick to the speed limit, more or less – and some of us are better at it (or luckier) than others.

When you have Type 1 diabetes, one must take care not to ‘drive low’, by observing personal blood sugar limits. Just as any driver will put on a favourite driving song when hitting the road and putting the pedal to the metal. In doing so, risk factors are assessed – personal safety, risk to others, and if making poor choices, one ultimately can face fines, or worse.

It’s the same with blood sugars. There’s no room for error, because errors can end up with dire consequences – for yourself and for others.

For me, I won’t get behind the wheel if my blood sugar is below 5.0 mmol/90 mg. An additional rule that I observe – if I’m in that mid-5.0 area (100 mg-ish), and my CGM (Continuous Glucose Monitor) is showing a down arrow (telling me “Warning! Falling blood sugars”) when I am heading out the door, I won’t get behind the wheel then either. I’ll sit down, load up with carbs and/or sugar, and wait it out.

Work will have to wait.
Grocery shopping will go on hold.
Life is absolutely suspended until I’m in a drive-safe range.

Once I get behind the wheel, the checking doesn’t stop. In fact this is when I become more alert – to the way I am feeling, and also to be in tune to what my CGM is telling me. Although it is set to alert me at 4.4 mmol/80 mg, when it does alert me, it means that I’ll pull over without delay, and will sit there, scarfing down glucose, until my BG rises above that magical 5.0/90 mark, with an up arrow. I don’t ask questions.

There's no load, I can't hold

Road so rough this I know

I'll be there when the light comes in

Tell 'em we're survivors

From "Life is a Highway" by Tom Cochrane

So driving with Type 1 diabetes. No excuses. No “I’m almost there”. And that's that.

Diabetesopoly: The Living With Diabetes Game

noreply@blogger.com (Jamie Naessens) — Thu, 06 Feb 2014 03:53:00 +0000

.
February 3rd was Diabetes Art Day, and yes, Mom, I'm still late with my assignments. Some things never change.

Much like the ubiquitous board game, living with diabetes is a strategic effort between the body, the mind and many external factors. As much as this piece shows many aspects to be considered by people living with diabetes, it also gives an insight into the complexity of living with it.

Larry and I collaborated on this board. Larry has been living with Type 2 for about 8 years and I've been living with Type 1 for 25 years. Needless to say, we've been around the board a few times.

Imagined by: Larry & Jamie
Medium: Digital (using Excel 2007)
Monopoly Copyright: Public Domain

I admit, our submission went beyond the norm, but what the heck. I think Larry and I have expressed ourselves quite nicely via this traditional office software turned alternative art form - a digital media and a simple game board. And believe it or not, Excel and lots of imagination were the only mediums used for this project. Ok, I admit, the cupcake image was 'borrowed'.

In our household, we express ourselves in two ways - words and music. Of course it can be argued that music is an art form, but does not work well in this format. As for words, by default, are somewhat off limits for the nature of this project.

This creation has been posted at this year's Diabetes Art Day 2014 Gallery. I urge you to wander over there at some point soon. It's definitely a worthwhile trip.

Now, for the uninitiated who might be wondering what Diabetes Art Day is all about, it is best summed up by Lee Ann Thill:

Diabetes Art Day is a web-based initiative for the Diabetes Online Community to “tell a story” about life with diabetes though creative visual expression. It’s a way for us to tell our stories so we can connect and share with each other and with our loved ones. It’s a way to generate diabetes awareness outside of the DOC by sharing artwork on Facebook, Twitter, blogs and community websites. Diabetes Art Day is for people young and old with any type of diabetes and their families, so children, spouses, parents, siblings, or anyone who is affected by diabetes can participate. For this one day, you’re encouraged to break out of your linguistic comfort zone, bust out some art materials, and make a piece of artwork – painting, drawing, collage, sculpture, an installation piece, a mixed media something or other, or whatever you can imagine. Whether you have lots of experience making art or none at all, Diabetes Art Day is for you to show the world what it’s like to live with diabetes in that “a picture is worth 1000 words” kind of way.

So there you have it. Our Diabetes Art Day submission for 2014. We'd love to hear what you have to say about our alternative art expression.

Pausing to breathe

noreply@blogger.com (Jamie Naessens) — Thu, 05 Dec 2013 04:46:00 +0000

With holiday time upon us, I am reminded of the type of world that we find ourselves in, and the technology that is part of it. Whether the latest Nintendo, tablet or the handy robot vacuums that wander our houses, something is always competing for our attention.

Actually, I kind of wish my pump looked like this. Pump manufacturers, take note

When you have type 1 diabetes, even more technology makes demands on you everyday, all day. Remember those tamagotchis? Feed me, pet me, play with me now, or you will be sorry. If you treat me well, I might play nicely. For a while.

But there comes a time when it just seems to much. This past summer, this reached a critical level. My pump and CGM seemed to be nagging, demanding, day and night. One in particular went rogue. Rogue because there seemed to be no discernible benefit, because it was wrong much of the time, so after more lost sleep, I wondered what's the point. I put it aside for the time being, but when I upgraded my OS on my Mac, Carelink, which is used to upload boatloads of data, was ill prepared for the upgrade, and was deemed broken; the last straw. My colicky tamagotchi babies were laid to rest.

So I hauled out my Ping out of my trusty Dbox (my treasure box of diabetes supplies and retired equipment), programmed it up, ordered supplies, and I haven't looked back. Mind you, I still don't have a CGM but one day I will do something about that. I have mixed feelings about ramping up the technology again. I am rather enjoying the relative peace that the Ping provides.

I admit, some technology does improve quality of life. But one day, barring a cure (ha!) (sorry that was a cynical slip), I hope to only have to worry about the feeding and watering of a Diabetes Alert Dog. Not only will that dog give me peace of mind, but an occasional appreciative wag of the tail after a long walk, which would be much more than my CGM could ever give me.

Bad Word Wednesday: Redacted Edition

noreply@blogger.com (Jamie Naessens) — Thu, 10 Oct 2013 02:42:00 +0000

Infusion set failures. Let me tell you about them.

For those who pump insulin, you know what that can mean. For those who don't know, it can lead to high BG readings that don't want to budge, not because you had that second brownie and didn't bolus the requisite amount of insulin, but because some [redacted] piece of [redacted] plastic failed to properly insert another piece under my skin properly. But instead of, say, trying to deliver for 5 minutes, and then telling me, "Hey, over here! I'm not working so well!", it lets me carry on with my bedtime routine. Until…

4:30-something [redacted] a.m.

Beep beep beep.

I roll over to check the phone on my bedside table. Not time to get up yet. I roll over to go back to sleep, knowing my trusty first alarm is scheduled for 5:55 am.

Beep beep beep.

I reach over to poke my phone, trying not to wake up too much.

Beep beep beep.

Then I realize that it's my [redacted] pump. I squint in the darkness, and see the dreaded No Delivery alert.

No this is a perfectly acceptable notification if it is, indeed, out of insulin because I hadn't loaded it up with insulin. However, I inserted the set right before bed. Something had gone wrong with the installation of said set, and I had to do something about it. Now.

[redacted]

So out of bed. Which means there's a required trip to the bathroom (yeah, because I am of a certain age), and downstairs to the Diabetes Supply Bin, unwrap a new infusion set, find a good spot on my body with my eyes squinting in the [redacted] too bright light of the dining room.

Next comes a BG test to find out where I'm at.

16.9 mmol (300 mg)

[redacted]

... and a lot more profane words than that were going through my head. And [redacted] that, I'm annoyed and starting to wake up too. This is just a piece of crap.

Nonetheless, I bolus the suggested amount and crawl back into bed. I think I noticed that it was just after 5 now. Less than an hour before the first alarm.

Fast forward to breakfast time. 6:20 am. Time to test, and THIS is what I get?!

[redacted]

BTW 15.9 mmol = 286 mg = not much [redacted] difference from 1-1/2 hours ago.

Ok, moving on....

Little Whispers

noreply@blogger.com (Jamie Naessens) — Wed, 28 Aug 2013 00:42:00 +0000

I am not a jealous person, or even an envious one.

Ok, maybe I'm lying a little bit.

I admit I feel a twinge of envy as my friends dig right into the lukewarm leftover pizza after a meeting, without a care in the world. They don't wonder how many carbs is in a Meat Lover's slice from Pizza Heaven, or how much insulin will cover that for the time being, or how much to extend a bolus over the course of several hours when the Post Pizza High comes back to haunt them.

I know it's childish of me, but I'm envious, just a little.

I wish I could sketch too//envy alert//: Source Unknown

On reflection of my "career" with diabetes, I can't remember ever having ~~a good~~ an in-range HbA1c. Ever. That's almost 25 years of numbers over 8% and sometimes much higher, representing blood sugars 10.2+ mmol (183+ mg). Ideally, we are told, someone with diabetes should an A1c of 7%*, representing blood sugars in range of 8.6 mmol (154 mg).

*Sidenote: This recommended amount is general, and varies depending on your physical condition, age, and a host of other factors.

I am well versed in the concept that I should have a lower A1c. Really I am. Now it certainly is my endo's job to remind me of this, (although senility has not yet set in - I do recall this fact all by myself). But for some reason, just about every other medical professional seems to have a vested interest in what My Number is, often adding their respective specialty's list of what could go wrong if I don't get That Number down.

Life should be so easy, eh?

Just another side note for anyone about to jump on the lower-number-is-better bandwagon: Just because I have a higher A1c than "recommended", it does NOT mean I haven't been trying. The value of how much I try does not correlate to my A1c level.

So, when I see my fellow diabetes friends share Their Number achievements, I am truly happy, even excited for them. I know how much work goes into even lowering it by just a little.

One could actually argue that I don't know, because I've never got there myself, but I will leave that discussion for those eager to make that point.

But, as I celebrate those successes with my friends, there's a little devil, sitting on my shoulder, whispering in my ear, "Don't you wish that was you?"

However, I am a lucky person. I also have an angel sitting on my other shoulder, reminding me that I can do this, and perhaps one day I will be able count myself among those who celebrate our successes.

Envy is the art of counting the other fellow's blessings instead of your own.

~Harold Coffin*~

*See what I did there? Seriously, the author's name is really Coffin!

Fatherly Reflections

noreply@blogger.com (Jamie Naessens) — Sun, 16 Jun 2013 04:00:00 +0000

My Dad is my biggest fan here at InkStain'D. He was my very first subscriber, and I know he will get a notification that this post has gone live. So, on this Father's Day, I think it is only right to give a little back to him.

My Dad is the coolest 82 year old that I know.

In addition to putting up with my own nonsense for a lot of years, he frequently would take his grandchildren to the park, ~~accidentally getting one stuck~~ pushing them endlessly on the swings, ~~melted~~ softened their ice-cream in the microwave, supporting lego building marathons, and has spent countless hours job searching for more than one of his children. He would play cribbage with my mother and my grandma, even though he hated cards, with ~~hardly a~~ no complaint. He is a patient listener, offering his advice when we seek it out and sometimes when we don't.

He is smart and knows about just all kinds of things. Technology doesn't phase him. He has used a computer for many years, and he does way more than check email. He's set up devices like Apple TV, and yes, he even tweets. He ~~stalks~~ follows me on Twitter to make sure I'm doing ok, and if I am MIA for a while, he faithfully checks in. And he loves to read, everything from blogs to historical books.

Where was this guy during those Lego marathons?

The one thing he loved, that ~~drove me crazy~~ (yes, I was an ungrateful child!) I under appreciated as I grew up, was his love of the pipes. No, not the kind that Toronto Mayor Rob Ford allegedly has used according to some missing video out there someplace, but yes the bonafide bagpipes. He has a kilt, and suffered through endless questions of what pipers wear under their kilts (think about it, what would you wear under it all if you were wearing a kilt?)

So as a nod to my biggest fan, this Father's Day, I'd love to share a story with him that blends two of his passions - the pipes and history. So just for my Dad on this Father's Day I'd like to share this story about the pipes and D-Day. He might already know it, because he knows just about everything. But I'll share it anyway ;)

And before I start, for clarification, I don't mean D-Day as in Diabetes Day, as is the norm for this blog. Certainly there is no shortage of "D" things mentioned here. I mean D-Day as in the D-Day.

Now, due to ~~stupid~~ copyright laws and such, I'm going to share the story by link, because I'm just very sure the Economist wouldn't give me license to reprint here. I'll start with a question.

What was the last tune they had piped on D-Day in Normandy?

Read all about it here.

As I reflect on my years since he brought me onto this planet, I see little bits of my Dad in me. But one day, I hope that I can be as smart and cool as him.

Happy Father's Day, Dad!

Courage, Brains and Heart

noreply@blogger.com (Jamie Naessens) — Fri, 17 May 2013 02:19:00 +0000

Accomplishments Big and Small: Another topic in DBlogWeek's Series:

We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small - think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.)

As I've been writing about my diabetes achievements, it struck me that they are much like those that the Scarecrow, the Tin Man and the Cowardly Lion faced in the Wizard of Oz.

The Cowardly Lion

Remember how scared he was? He was afraid of everything. I too was that Cowardly Lion as I faced that stupid orange as a newly-diagnosed 28 year old, during my short stay in the hospital. I can recall each dimple in that orange, and remember the fear that I was, at some point, going to just have to do that to myself. I could not fathom how that was going to "be just like" giving myself a needle. But I did it. That was my first step to finding courage. As it turned out, it was my first courageous step in my diabetes journey. Since then I've found myself in the Cowardly Lion role many times, but I've also found as many opportunities to find courage along the way.

The Tin Man

Diabetes is a sneaky sort. Just when you think you have figured it out, you are humbled and realize that you haven't figured out a thing. Low blood sugars will sneak up on you, and highs can slap you down. A quote comes to mind from a song that has absolutely nothing to do with diabetes, but the words resonate for me:

I get knocked down, but I get up again

Tubthumping

Diabetes is just like that. Just when you think you've figured it out, it will knock you down. I have been humbled many more times than I can count. But through no shortage of strategizing, analyzing and sorting things out, I seem to still come out on top. I am not yet master of this disease, nor do I think that I ever will be. But I'm better at dealing with it than I used to be. As I evolve with this disease - along with diabetes technology, I'm getting better at it. As with the Tin Man, I have discovered that I have the smarts to figure this out, and one day hope to draw back the curtain on that diabetes wizard.

The Scarecrow

By far, I think that discovering the DOC (Diabetes Online Community) is like discovering my own heart and, even better, discovering that I am part of a bigger whole. It wasn't so long ago that I didn't talk much about diabetes. We've come together from different places, cultures, we are employed, unemployed, insured, uninsured, we are cool and we are nerdy. We have brought our talents, our skills, our perspectives and our challenges to the diabetes table. I am part of that community. Somehow we manage to be a big, messy and still, somehow cohesive group, supporting each other through it all. We are a community with heart and what can be better than being part of that?

To read great posts from fellow "Scarecrows", click here.

It's not too late to join in. If you don't have a blog, and would like to have some space to join in, just let me know and I can give you some space, or click on the banner below.

Not a Movie, Not a Nightmare - Memories

noreply@blogger.com (Jamie Naessens) — Thu, 16 May 2013 01:16:00 +0000

Today's DBlogWeek Day 3 post is about sharing a memorable diabetes day, taking it anywhere, whether you or a loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share.

For me this is a very dark subject playing out in my mind as a scene from a very sinister horror movie. I've tried to write about them before and just now, a post sits there in my drafts, unfinished.

To play it out again in my mind - and then writing it as if it were a screenplay brings everything flooding back, and I can't - I won't do it. At least not now. I'm not ready, and not sure if I'll ever be ready.

Think of your worst nightmare that you've ever had. Think of the fear, the darkness, the helplessness. You know it's not real, so the memory eventually fades.

Not so with my diabetes memories. Because they were real.

In the haze of a low blood sugar, on thee edge of consciousness, I can't remember much - just flashes or snippets of memory. But they can play out in my mind as if it were just last night.

I feel anxiety rising, remembering the real fear, and the fog. It starts in the pit of my stomach, but has nowhere to go, and I just want to hide.

But this is real life, and not just some bad dream. The worst part is, there have been some very real consequences. The most disturbing is that I have scared those who love me most.

And for that, there's only one thing I can say, and share with you today.

Damn you, diabetes.

You can find more Memories posts on the Wednesday 5/15 Link List.

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