In the past 6 months the amount of activity I’ve been doing has been steadily increasing.  I’m running at least twice a week and I go hiking almost every Saturday and Sunday, and sometimes, I even go to the gym…it’s great to have that activity back in my life.

But…

There’s a but…

In the past month my blood sugars have been a wreck…all over the place as I transitioned from pump to shots…They’re either high or low (on the pump they were either high or HIGH).  There’s enough highs that I’m constantly nauseated and there’s enough lows that each one is worse in terms of the “after low” symptoms.

It’s miserable.

I found myself sitting on the mountain the other day wondering “Will I ever feel normal again?”

Normal. A word that I associate with not having diabetes.  Well, used to associate; now it’s associated with the feelings of “I have diabetes but my blood sugars are rockin and I’m enjoying this hike that I’m on”. Normal.

I had finally reached a point where I knew what it meant to feel good while hiking and having diabetes.  To accept that checking my blood and chowing down on some skittles to keep the lows from occurring was a part of my adventures.  It was a glorious day the day I recognized that so much of the “I hate” attitude was associated not with the sport, but with the blood sugars.  Life is grand when my blood sugars are in control, but activities, no matter how much I love them are miserable when my blood sugars are a wreck.

Until things get figured out (it feels like we’re always figuring something out when it comes to diabetes), I sit and wonder, will I ever “feel” normal again.

The other day I was moping around the house because Diabetes Art Day isn’t in September this year…not that I needed a special day to make art for, I have plenty of ideas rolling around in my head, I can make art any day…but the motivation, the deadline, the thrill of crafting late into the night…I was craving that…and therefore moping because I didn’t have that…

AND THEN…

BAM! An opportunity! A motivator! A tight deadline! Oh! MY!

There’s so much excitement in me I can’t express it.

The shot story: Strip Safely is an initiative to raise awareness about the important issue of test strip accuracy.  Right now the FDA allows for a +- 20% margin of error in the numbers that our test strips produce.  The inaccuracy in numbers leads to inaccuracy in insulin intake which can result in some horrible side effects.  The biggest one I can relate to is an overdose of insulin causing low blood sugars that result in seizures when I’m sleeping.

What does this have to do with art?  (From the D’Art Day site)

The Strip Safely initiative calls on everyone affected by diabetes to send letters supporting policy change to their government representatives. Printed letters do not capture and convey emotion the way visual art can though, so everyone affected by diabetes is invited to join this special edition of Diabetes Art Day.

Me being oblivious to the world as I am, if it hadn’t been for the link between Diabetes Art Day and the Strip Safely initiative I wouldn’t have heard about it.  There’s a visibility that art brings to words.  A level of personalization.  I’d even argue that art brings a level of understanding to a subject a person may not be well familiar with, it spurs feelings and emotions.

I’m now working on a piece of art, I encourage you to do the same :)

When I was at the Center for Hope there were many sessions on communication, how to do it, how to convey our feelings, how to express what bothered us.  The idea being, we needed to express what we were keeping in because by not expressing it we were fueling the problem instead of helping to fix it.

Last month I talked about using art as a expression method but sometimes there exists a time and a place to talk about what’s going on or what may be triggering various actions within us.

The other night, I spoke up about something that has bothered me for years and it has recently been intensely grating on me.

It seems as though over the last month I have heard more about how sugar is bad for those with people with diabetes, how PWD shouldn’t be eating it, how Paula Dean (I kid you not) deserves to lose everything because she has type 2 diabetes and runs her show with butter and sugar.

Repeatedly, I’ve had to reeducate people when the comments: oh you can’t eat this can you? should you be eating that? that isn’t good for you, is it?

“I can eat anything, I just have to dose for it”

The other night, a close family member that I’m constantly having to reeducate made a comment that pushed me far over the edge as I sat down to enjoy a lovely and scrumptious dessert and so I had to have what I’m now referring to as “THE TALK” with her.

THE TALK goes like this.

I’ve been really frustrated lately with all these comments about what I can and cannot eat.  More often I’m hearing it from all angles when we’re together and around the people we have in common.  It is really important to me that you understand that I can eat anything.  It’s important to me that you understand that I know what I need to do for the food I’m eating and that I am aware of consequences  associated with particular foods and that I will handle them appropriately.  I would really like to be able to sit down and enjoy meals with you without being questioned on whether or not I should be eating what we’re going to enjoy.

End of THE TALK ;)

It’s really cool because without realizing it, I used a method of communication that seems to be a theme among all communication activities I’ve taken part in:

I feel…

When you…

I’d rather…

(and if you really want to negotiate) I’m willing…

I used to sneak, horde, hide, go to a different room, a plethora of things to get/eat the food people thought I shouldn’t be eating.  Sometimes, I still catch myself checking to make sure no one is around  when I’m in the kitchen getting something (like a cookie).  What I really like though, is this new found freedom of having had this conversation and receiving the response “you know what, you’re right, you know what you need to do for the food you’re eating.  I won’t ask/make comments anymore.”

Ahhhhhhhhhhhhhhhhhh, how great freedom feels!

“…my 11 year old daughter who was diagnosed with diabetes a few years back?”

That was the question that was posed to me just a few weeks after I got out of treatment – by a pharmacist in Reno.

That’s a hard question I thought to myself – 1 thing.  1 piece of advice.  She’s the age now that I was when I was diagnosed – some much from those tween years had helped form the rebellion in me against diabetes that led me down a path that took me to treatment.

I stood there and I thought quite hard for several moments.

In the end I told her – I wouldn’t tell your daughter anything – the one piece of advice I would give – I will give to you; for you.

“Let your daughter eat what she wants, just make sure she appropriately doses for it.”

What came next broke my heart.

“Really?!?!” she said “We limit what she can eat – make sure she doesn’t eat sugar or other bad things that cause her blood sugar to rise.”

I reinforced what I had said – but the anger swelled inside my head “seriously! it’s been 20 years since my diagnosis – so much has changed – we know better now!!! why is this miseducation still circulating?!?!?!?!????”

I guess that is why I’ve begun blogging about my trip to The Center for Hope of the Sierras; because even with the advancements in what is known about diabetes and the different ways we can care for it; there’s still a world of miseducation out there – and that old thinking – the old thought processes – are just as destructive today if not moreso than they were 20 years ago.

I think if I hadn’t just stepped out of a residential program regarding my diabetes – my answer might have been different – but based on her response to what I told her – I know I said the right thing.

What advice would you have given?

Sometimes, we need help

By Courtney | 5 Rookie Marks »

I can list the ways May 29th is memorable – it’s a monumental day every year – it’s my birthday – but last year an event happened that will make my birthday even more monumental with each year.

It’s one of those things that we don’t like to talk about. It’s a skeleton hidden in a closet – the less people that know the better. But that’s really not true. That’s not how it should be. It’s how society and the people around us in general have spun it. Keep it to yourself because it’s bad – and if it gets out – it’s gossip fodder.

“Did you hear about her/him?”

And it gets talked about endlessly behind our backs but never to our faces.

By now you’re wondering what it is I’m talking about. Perhaps you even have speculations of your own. Here, let me share :)

1 year ago, I graduated from Center for Hope of the Sierras. They are a treatment center for eating disorders – but they’re special and have a program for those of us with diabetes and an eating disorder. When I say they’re special – their program seriously stands out from others because it’s not that they simply let people with diabetes into their program (not all eating disorder facilities do) but it’s a focus. It’s not a program where you go in and you have to be the expert on your diabetes and teach them – but they’re experts – they know diabetes. The dietician knows diabetes. Their nurses know diabetes. The caretakers are well versed. As a person with diabetes we see an endo who has Type 1 diabetes weekly. They know diabetes – not just knowing about diabetes – but they KNOW diabetes.

I spent 3 moths there. I put myself there. I needed help on many levels – my idea of coping with diabetes was to ignore it. I had never let it be a part of my life. There was an epic bonus to ignoring my diabetes. I could eat whatever the heck I wanted and stay thin. A beautiful marriage of twisted thoughts if you ignore how sick I was.

There are many great things that came out of my stay there – but there’s one in particular I want to focus on.

Coping Mechanisms, in particular for me – Art Therapy.

The whole reason I went down the route of coping methods that I did is I couldn’t appropriately express it and I didn’t know how to deal with it. (And honestly, people were no help because they didn’t understand.)

What I have learned in the last year is that art expresses everything. Even better – it can have a world of meaning behind it and people will see a hundred different things in that same piece of art. If you don’t want to explain it you don’t have to – but everything that you were feeling inside is no longer inside of you because it’s on a canvas or a paper or a side walk, on a napkin , on the inside of a gum wrapper – wherever you put your art – it’s no longer inside of you! That’s the short story :)

I’ll tell you a secret about art, because if you’re like me you’re thinking “I don’t know what to do, I have to wait for an idea. I have to wait and be inspired.” I learned that’s not true, I learned that once you start doing something, maybe it’s just doodling – art will flood from you.

For me, the therapy continues – a piece of art will reveal a meaning I didn’t see before it was done.  Some art I do is created with a meaning right from the get go.  Any art I create though, is an expression, a release.  There’s this other quote that I found that very well puts this concept of art therapy for me:

If I could say it, I wouldn’t have to paint it. – Edward Hopper

Replace paint with any manner of art.  ”say it” is the key word, we often can’t say it.  We can’t express it, we can’t cope with it, and that drives us the directions we went.  But with art, now there’s something.  we don’t have to say it, art is expressing it, art is a manner of coping with it.  It’s beautiful!

Blood Glucose: 48

I never start by stating my blood sugar/blood glucose/bg but because I’m low I thought I should post it. People who have diabetes / know people with diabetes very well will know that means something. For the rest of you – let’s just put it this way: my mom would usually say “Courtney, shut up and eat” and to the others “don’t talk to her, she’s low”.

Very much signs I probably shouldn’t be writing this and a horrible note that says “i’m discrediting everything i’m about to write due to a glucose starved brain which indicates that I’m slightly crazy” <---- that there is a stereotype. Not everyone who has a glucose starved brain is crazy - sometimes we get clear thoughts - and courage to say something that we've not been expressing (that's me, now, at this moment)

Ok, to the point, the reason I'm writing this: A name. A name change.

I keep pretty quiet about all things diabetes these days because I got tired of it being the center of my life, but something recently caught my eye....A Petition to Revise Names of Type 1 & 2 Diabetes to Reflect the Nature of Each Disease.

What I’ve decided is this: name change or no name change – for the past 20 years I have had diabetes and it will continue to be diabetes. And in my state of having diabetes I will always have to explain that I take insulin, that diet and exercise will not eliminate the fact that I have to take insulin, that my pancreas is dead (I still think that’s a misnomer – but that discussion is not for this moment), I got it as a kid – not due to some horrific amount of sugar intake – but an unknown reason.

What’s interesting to me, is a few years before I was diagnosed (ok, a decade) – a name change had already taken place. It went from Juvenile Onset diabetes to insulin dependent diabetes mellitus (Lee Ann at The Butter Compartment went into this a bit more in depth about the nomenclature of the name if you want to know more) – but when I was diagnosed in 1992 – it may have been called IDDM by the books – but the docs called it juvenile diabetes. Just because the medical name gets changed doesn’t mean the ambient noise around it will change.

To come even closer to home for me – with something I know intimately – and have to explain almost as often as diabetes in my life – bikes.

To most people – a bike is a bike is a bike. Regardless of being a mtn bike, a road bike, a triathlon bike, a cyclocross bike, a single speed bike, a fixed gear bike. It’s all a bike – they all serve the same purpose – you get on – you pedal – you go places. It’s a bike.

But to me – it’s not a bike, and people who know bikes (like those of us who know diabetes) know they’re not the same – they’re very different – even if it’s some minuscule way. If you’re intimate with it, you know the differences and can answer any question that gets thrown at you “what’s different about that bike?” – “what do you mean you didn’t get diabetes from eating lots of sugar?”.

The way people don’t understand diabetes – is similar to the way people don’t understand why I need “another” bike. Why I have “too many” bikes and what their different purposes are. Regardless of their names, I will always have to answer questions and educate the mass population that “just doesn’t get it”.

A name is mostly nothing – it’s a title – we have to explain its details, its intricacies, no mater how long/short/detailed etc the name is.

I have a disease – it’s called diabetes.

There are many days that pay homage to diabetes.  But my favorite day that pays homage to diabetes is Diabetes Art Day.  This year, Feb 4th (yesterday) was the 4th Annual Diabetes Art Day.  Honestly, it’s the only ‘diabetes’ day that I thouroughly enjoy.

I wrote last year about how I enjoy watching the trash (re: diabetes supplies remains) piling up and seeing the idea in my head.  This years idea has been a year in the head.  Where it started in my head and where it ended up in real life are very different, but I can say without a doubt, this is my favorite piece.  It’s perfect!  There was only one moment of criticism and I’m blaming that on the low blood sugar I was experiencing when I got frustrated with the piece.

Unleash the Beast - Diabetes Art Day 2013

I refer to diabetes as ‘the best’ it rears its ugly head and causes me anger. It interrupts my life. It won’t go away. I’m tangled in it no matter how far I try to get away. These are feelings that no matter how hard I try to suppress them don’t go away.  No amount of “I’m going to do this and feel better about diabetes” disappates the level of severity regarding those feelings.

I spend an ungodly amount of time fighting with diabetes thinking I’ll win.   I think it needs to be reigned in, controlled better.  These aren’t new thoughts.   They’re 20 year old thoughts that I thought would eventually go away if I ignored them.  But they don’t.  They may exist forever, and this piece celebrates that fight.

Me (the shark) fighting diabetes (the squid) keeps diabetes on a leash, an unnecessary leash.  It’s like the dog that will mostly obey you if you take of the leash and walk not hounding it.  That’s how diabetes is in my life.  If I learn to live with it and not try to force it onto a path it will never be on because I don’t (did I just say that, “I don’t”) have control over all variables surrounding the diabetes I’ll be able to live with it without fighting it.  I have to ‘Unleash the Beast’.

Sure it may run into the unsuspecting neighbors yard, but for the most part, it will walk along side me at the pace I want to go.

If you’re wondering what a shark and squid have to do with taking a dog on a walk, I don’t blame you….what can I say, I have an affinity for creatures of the sea.  All that matters is, I get to be the shark….diabetes can be the squid that trys to strangle me, but I’m bigger and stronger than it (that may not be true to real life scenarios but this is my world and what I say goes, LOL)

I love art. I love creating art.  I love seeing the diabetes “trash” piling up and an idea forming in my mind of what to do with it.  I love seeing it all come together.

If you asked me what my art means as I’m creating it, I’d tell you it means nothing, it’s just art, it’s fun, it puts a smile on my face.  I love that when I’m done, I see the story behind it that I didn’t see up front.  I love that after it’s all said and done a title comes to mind.

It’s how my art rolls, my piece for Diabetes Art Day 2012 is no exception.

Stings So Sweet - Diabetes Art Day 2012

Stings So Sweet

This piece came out of my love for nature…it’s beautiful to see the big bomber bees as they come buzzing past you and land on a flower.  I saw a perfect opportunity with the omnipod and when I was taking shots using pen needles.  I could see it so clearly in my head.

As I looked at it when it was completed I saw the title “Stings So Sweet” and a moment later I saw that the title and the piece told a story.

The image screams shots/insulin to me.  Stings so sweet.

I hate what I have to do to live.  I hate that I either have to wear a pump or pack around pen needles.  But it’s nectar from the gods to my body.  Stings so sweet.

I need insulin the way flowers need the bees…I need it to continue to thrive.  Stings so sweet.

And then there’s a moment of reflection where I realize that I live in a time where I get to be grateful that it stings so sweet.  100 years ago I’d have died from diabetes; but not in this lifetime, not me, not unless I let it.  It stings so sweet.

Diabetes Art Day should be also known as “bring Courtney out of hiatus” day…it’s happened the past 2 years…(see 2011 and 2010 D’Art Days).

When it comes to diabetes the last couple of years, Diabetes Art Day is one day I can be excited to have diabetes because I get to take all the trash it produces and make something magnificent out of it. I save all the trash (read: pack rat) and have ideas rolling around in my head for what to do with. Eventually, I get around to putting what’s in my head to canvas.

This year’s piece has been in my head for probably 6 months…The title came after it was complete…but in retrospect it’s perfect; I’ll explain tomorrow. In the meantime, here it is…My Diabetes Art Day Masterpiece – “Stings So Sweet”.

Stings So Sweet - Diabetes Art Day 2012

I’m currently seeing a new endocrinologist from the one that I’ve had the last 10 years. With him I had to start at ground zero. I started with nothing. Everything I had before meant nothing, the blood sugar targets, the previous ratios for insulin amounts, all of it meant nothing. We started over.

Starting over was probably the best thing that could ever have happened to me. I’ve learned a lot.

There’s this understanding that diabetes is about progress not perfection and yet there’s this aspect of perfection that we build in and can’t ever reach. We work hard for something that can’t be, we get frustrated, and if you’re me… we give up.

Insulin is not perfect.
When I take my insulin is not perfect.
Math to figure out how much insulin I have on board is not perfect.
What I eat is not perfect.
How many carbs I eat is not perfect.
How many carbs I count is not perfect.

And it’s ok. Right now, I’m ok with that; and the idea is for me to be ok with that at all times. Perfectionism in an imperfect world will run you deep into the ground; I want to live.

It’s not perfect and it’s ok.