Monday, May 18, 2015

Food and the 100 Acre Wood

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

What I like best

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

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

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

What about lunch?

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

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

Ten pots of honey...

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

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

Getting thin?

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

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

What's for breakfast?

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

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

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



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

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

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

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

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

Sunday, May 17, 2015

Labelling the Change

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

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

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

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

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

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

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

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

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

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

This needs to change. 

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

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

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

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

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

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

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

I am part of the Change. 

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

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

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


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



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

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

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

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

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

Thursday, May 14, 2015

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. 




Wednesday, May 13, 2015

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.