Natural Born Cyborg

"Ha! Made you gush," said the Insulin Pump.

2011-10-09T16:18:00.000-04:00

I keep getting nasty gushers. Like non-stop bleeding everywhere gushers. Half the time I put in a new infusion set and blood draws up through the canula right away. So, all this in mind, of course when I woke up at 4am the first thing thought in my brain was, "Oh, I forgot to take out my old site. I should rip that out RIGHT NOW." Smartness. I really wanted to have to get up to change clothes and bedding at that hour.

That's really just a sample size. It went EVERYWHERE. Maybe I should start pulling them out while standing over a basin or something?

Diabetes Art Day 2011

2011-09-01T15:45:00.002-04:00

It's been hectic this summer, so I don't have much this year, but I like this day... and I wanted to contribute something... so, I give you this:

and, look, you can meme that:

You can read more about Diabetes Art Day at Lee Ann's blog or the official site.

This is important: Professor Jean Claude Mbanya, president of the IDF speaks about diabetes around the globe

2011-07-27T17:04:00.001-04:00

Listen to internet radio with DiabetesSocMed on Blog Talk Radio

July 27th, 1921 insulin was discovered by Banting & Best and their dog friends. I think about them sometimes. Sometimes I wonder what I would said if I got to somehow skip back in time a bit and have a chat with them. I know when they realized that what they had and what it meant for people with diabetes, the group decided to sell the patent for $1. This allowed the drug speedier production. I wonder, considering this good will, what they would think of some of the situations described by Professor Mbanya, president of the International Diabetes Federation, where parents are faced with the grim reality that treating their one child with diabetes could mean devastating hardship or even death for the rest of the family? I would surely feel embarassed to tell them that at this point in time there are still people who die from diabetes, because they simply don't have access to the insulin they need.

Bahahahaha

2011-07-26T17:52:00.000-04:00

OMG. I saw this and started to laugh so hard. My dad used to send me to school with the biggest lunches ever! Except it wasn't purely out of fear, being on multiple daily injections (Regular and NPH insulin at that) I NEEDED all that food. He also made a point of including no or low-carb snacks, just in case I got hungry, but didn't really need any more carbs.

Now, to say this thing was massive is probably a major understatement; it was really closer to a snack truck, or maybe even a portable grocery store. So with that image in your mind, the best story to come of this situation: I remember going to the bathroom and not having anywhere to put my ginormous lunch, so I put it on the floor (I know, maybe eww, but it was in a plastic bag.) Then I heard these three popular girls go, "HOLY! SHIT! Whose MASSIVE lunch is that???" Yeah, I stayed in the stall until they left. I wasn't mortified or afraid, I just couldn't think of what to say to them... like, really, how do you come back from that? Anyway, I seem to remember I did feel a little self-conscious about my space-shuttle-sized lunches after, but not enough to stop lugging them around...

At any rate, now, I honestly just think the whole ordeal really funny.

Back-up Packrat

2011-06-17T16:51:00.000-04:00

I've developed this odd quirk whereby I have back-ups of EVERYTHING: back-up shampoo, back-up conditioner, back-up toothpaste, back-up granola bars, back-up laundry detergent, back-up coats, back-up bags, back-up etc... And I get REALLY anxious if I don't have my back-ups.

It finally dawned on me it stems from a bonafide anxiety around always requiring: back-up food, back-up glucose tabs, back-up insulin, back-up infusion sites, back-up cartridges, back-up needles, back-up medical things etc...

The bad news is I got a lot of clutter. The good news is I'm ready for the zombie apocalypse.

Curiously, most of these symptoms are similar
to those of a low blood glucose... though with respect
to the last point: I'm not so picky about what I
eat when low.

MacGyver Moment: Knit Pump Case

2011-05-21T16:37:00.001-04:00

So, my Mum got in a bit of an accident last weekend (she is okay, but a bit banged up and stressed) and I wasn't able to finish all the posts for Diabetes Blog Week. My post for Sunday was for Karen, who started and organizes Diabetes Blog Week. Something I realized about Karen while reading her posts this time around is that she also knits! So, in the spirit of Karen's awesomeness I have amalgamated the interests of both her blogs with a knitted pump cases!

There are two cases I have made. Both are supposed to be worn around the side of a bra...

Fig. 1: Where you can wear it
(though, really, wear it anywhere you like)

The first is a little more simple...

Simple Knit Pump Case

Yarn: Bernat Satin [100% Acrylic; 100g; 149 m/163 yrds] (I used the colour Buff, but there are a lot of colours to choose from- beige and earth tones to bright and colourful)

Needles: 5mm/US8

Button: 15mm button

Gauge: 18 sts/24 rows = 4X4 inches using size US8 needles

Directions:

Body section:

Cast on 16 stiches.

1st row: knit all stitches.

2nd row: purl all stitches.

Repeat these two rows until the piece measures 6.5 inches and ending on a purl row.

Begin to decrease for the strap:

Row 1: K1, SSK, knit to last three stitches, K2tog, K1

Row 2: Purl all stitches.

Row 3: Knit all stitches.

Repeat these three rows until 5 stitches remain.

Continue in stockinette stitch until the strap measures 6 inches (from the first decrease round.)

K2, YO twice, K2together, knit to end.

Next row, P3, drop the next sticth (one of the YO), P2.

Continue in stockinette for another 1 inch and bind off all stitches.

Finishing:

With the wrong side (purl) facing you fold the body section up 3.25 inches. Join seams on either side to create a pocket.

Weave in all ends.

Sew a 15mm button on in the middle of the upper front of the pocket (opposite side of the strap.)

Fig. 2: Really off-scale schemata...
be thankful I don't give instructions for bridges.

In the Round Knit Pump Case

Yarn: Sirdar Snuggly Baby Bamboo [80% Bamboo sourced viscose, 20% Wool; 50g; 95 m/104 yrds] (I used the colour Nestle, which apparently has been discontinued)

Needles: 4 double pointed size 4mm/US6

Button: 15mm button

Gauge: 22 sts/28 rows = 4X4 inches using size US6 needles

Directions:

Body section:

Cast on 30 stitches, distribute evenly among three needles and join for knitting in the round.

1st round: Place marker to mark beginning of round. K all stitches.

Continue knitting each round until the piece measures 3 inches.

Next round K2tog, K13, SSK, K to end of round.

Next round K all stitches.

Next round K2tog, K11, SSK, K to end of round.

Next round K all stitches.

Next round K2tog, K10, SSK, K to end of round.

Next round K all stitches.

Next round K2tog, K8, SSK, K to end of round.

Rearrange stiches onto two needles, so that there are twelve on one needle and twelve on the other.

Bind off in kitchener stitch.

Strap:

From the original marker placed to mark the beginning of the work, pick-up and knit 15 stitches.

1st row: K2, P until last two stitches, K2

2nd row: K2, SSK, K until last four stitches, K2tog, K2 (13 stitches left)

3rd row: K2, P until last two stitches, K2

4th row: K2, SSK, K until last four stitches, K2tog, K2 (11 stitches left)

5th row: K2, P until last two stitches, K2

6th row: K2, SSK, K until last four stitches, K2tog, K2 (9 stitches left)

7th row: K2, P until last two stitches, K2

8th row: K2, SSK, K until last four stitches, K2tog, K2 (7 stitches left)

9th row: K2, P until last two stitches, K2

10th row: K all stitches

Making sure to end on an odd row, repeat last two rows until strap measures 6 inches (or desired length) from the pick-up stitches.

Next row: K3, YO twice, K2together, knit to end.

Next row: K2, P, drop the next sticth (one of the YO), P to last 2 stitches, K2.

Next row: K all stitches.

Next row: K2, P to last two stitches, K2.

Repeat last two rows for one more inch.

Bind off all stitches.

Weave in ends and sew on 15mm button on middle of front.

Some notes about the patterns:

I have an Animas 2020 pump and, so, all the measurements were derived from this pumps dimensions... but I the material ends up having a fair amount of give and I think the measurements would work well enough for the Metronic pumps as well...
It may seem weird to have a smaller strap, but it makes it easier to take the pump out of the case without having to undo the button...
I did this last pattern I did from memory. If any of the decreases are off, please let me know...
I don't mind (if it ends up working well and you end up liking the pattern) people sharing the pattern, but please give credit and link back here. (Thanks <3)

Awesome Things

2011-05-13T23:23:00.000-04:00

Today's post for Diabetes Blog Week is about Awesome Things:

In February the #dsma blog carnival challenged us to write about the most awesome thing we’d done DESPITE diabetes. Today let’s put a twist on that topic and focus on the good things diabetes has brought us. What awesome thing have you (or your child) done BECAUSE of diabetes? After all, like my blog header says, life with diabetes isn’t all bad!

So, last summer I discovered a site for the group called Connected in Motion. They provide different outdoor events for people with type 1 diabetes, in the belief that we all have a lot of valuable lived-knowledge about diabetes that we to share with and learn from one another. I saw that they had a weekend canoe trip planned for the end of August...

FLASH BACK TO SEVERAL YEARS EARLIER: I remember friends had asked me to go camping with them. I remember noting that we would need to brainstorm about food, because at the time I was on shots and very sensitive to insulin... which meant that any exercise (like carrying a bag of groceries!) meant dealing with lows. I remember them saying there wasn't a lot of exercise involved, so I should be fine. "But, isn't there hiking/portaging and canoeing?" I asked. "Yes," they replied, "but it's really not that much exercise." To which my brain thought: These are my friends and I love them, but there is no way in hell I'm going out into the woods with them. So, I had always wondered what I was missing out on in these trips... So, figuring that everyone on the trip would be kind of in the same boat (no pun intended... ha!) I signed up for the canoe/camping trip with Connected in Motion.

Now, here's how I remember the conversation with my parents after I signed up for this trip:

Parents: So, do you know anyone else going on the trip?

Me: No.

Parents: Do you know people that have done the trips before, then?

Me: Nope.

Parents: Well, how did you find out about it?

Me: I found it on the internet.

Parents: (Silence)

Me: It's going to be fiiiiine. I think maybe I do know someone who knows something about them... ?

That trip was the first time ever that I got to hang out with people that had type 1 diabetes. I kind of underestimated how great that would be. I didn't have to explain diabetes or glucometers or lows or highs to anyone. I didn't have to ask people if they minded stopping so I could test my blood; I just said I needed to or did it and people understood. (Which made me realize I should never really ask. I should just tell people it's going to happen, stop and do it.) It also felt pretty great to be able to do something that I felt like I would never get to do. After that trip, if anyone had asked if I wanted to go camping/canoeing I felt like I had the tools and knowledge to be able to do so.

Anyway, I thought this was a good story for this post because it's not just something I did despite diabetes, but also because of diabetes... And not just my diabetes, but everyone's on the trip: without their support and knowledge I wouldn't have been able to achieve what I had that weekend.

About six months later I went to another event hosted by Connected in Motion. At one point we all gathered and figured out how long each of us had had diabetes... then we added up all those years to see how much live experience was sitting in the room:

Ten things I dislike about diabetes...

2011-05-12T09:30:00.106-04:00

Today's Diabetes Blog Week post is about 10 Things I Hate about Having Diabetes:

Having a positive attitude is important . . . but let’s face it, diabetes isn’t all sunshine and roses (or glitter and unicorns, for that matter). So today let’s vent by listing ten things about diabetes that we hate. Make them funny, make them sarcastic, make them serious, make them anything you want them to be!!

I don't know if this makes me weird, but I had a hard time coming up with a list of ten. (Serious???) Seriously. (WTF?!?) I know...

I didn't think it would be that hard, but I could think of things that I find annoying or that I maybe even severely dislike... I couldn't think of things that I HATE. I feel like diabetes is so a part of me at this point that it feels like saying I hate myself... and I think if I felt like that I would just stop dealing with all of it, so I kind of don't really want to ever feel like that about it...

In light of this strange conundrum, I made this about things that I dislike about having diabetes. Hope that's okay.

Here are my top ten dislikes:

Going low
Going low and not realizing it until it's really, really low... and inadvertently eating the top of the glucose tab tube, because it's the same width and height
Eating extra food when you go low and you've already eaten... Teletubbies tummy (See image below.)
Eating after you throw-up, so you don't go low
How much more complicated it makes having other illnesses, even just a cold
That doctor's blame all other physical symptoms as complications of diabetes, even when they have nothing to do with diabetes... and they're not even recognized as complications of diabetes
Writing papers (the stress and sitting around make my blood sugars go high)
The sawdust-mouth feel that goes along with a high
All the extra medical gear I have to lug around (when I travel it's half my luggage!)
The sense of isolation when you don't have people around that understand/have diabetes

I can say out of all of those, the one thing I really do hate is going low. I'm so sensitive to insulin it really doesn't take much for me to take a nose dive, though it has been better on the pump and when I stay away from certain foods. Sitting at a 1 mmol/L is a pretty disgusting and frightening experience.

Dramatization of #3

Diabetes Bloopers

2011-05-11T19:34:00.000-04:00

Today's topic for Diabetes Blog Week is Diabetes Bloopers:

Whether you or your loved one are newly diagnosed or have been dealing with diabetes for a while, you probably realize that things can (and will) go wrong. But sometimes the things that go wrong aren’t stressful - instead sometimes they are downright funny! Go ahead and share your Diabetes Blooper - your “I can’t believe I did that" moment - your big “D-oh” - and let’s all have a good laugh together!!

This isn't necessarily a diabetes d'oh moment, but it is my favouritest ever medical moment! (Actually, the one I referenced in the previous post...)

It happened the first morning I was in the hospital after finding out I had diabetes. Unbeknownst to me Nurse H, the heavily perfumed and make-upped diabetes nurse, would waltz into my room at a bright and early 6 am. VERY CHIPPER. She carried with her a scale and a class full of nursing students.

Later, I would find out, I was the talk of the ward, as no one there had ever seen a real live type 1 diabetic (I am assuming at that point 'diabetic' was all they saw me as, because most of them certainly didn't treat me like a person...)

At any rate, in paraded Nurse H and her posse of students. She then cheerily woke me up from near DKA coma state, threw down that scale and happily ordered me to jump out of bed and hop on.

Now, I'm sure anybody reading this who has diabetes knows all too well that you don't feel too shit hot after having high blood glucose levels for weeks on end. But I don't want to assume everyone reading this knows, so just in case you don't, let's just say I wasn't too into the idea of waking up and getting out of bed... Or, actually, let's just say I was maybe only capable of partial consciousness...

Blearily, I rolled out of bed and tried really, really hard to stand on that scale. REALLY HARD... but I kept falling off. I just couldn't seem to balance right and every time Nurse H went to read my weight I'd start tilting over and have to step off one foot to steady myself. Me being bright I thought up the perfect solution, and put my arms straight out to steady myself... but I still kept falling off.

Of course, I thought it was hilarious and proceeded to express this by giggling really loud... Somehow, though, when I looked around, no one else was laughing-- actually, I would say they were all pretty flippin' serious... Which made me laugh even harder, because it made in all the more absurd.

At this point, we come to my proudest medical moment ever, because as I wobbled around with my arms out-stretched and giggling, I yelled out:

"Oh my God!!!! I'M LIKE AN AIRPLANE!!!!!!!!!!"

Nobody laughed. I still don't know how they got me to eventually stand on that scale. I was completely out of my head...

My only regret in the whole incident is not having had the wherewithal to have caught a glimpse of Nurse H's face, because I am sure she was mortified... She was, after all, showing off her only ever type 1 specimen.

From time to time I wonder if the student nurses that attended class that day walked away thinking my actions prototypical behaviours for type 1 diabetes... Secretly, as long as they didn't end up working in diabetes care, I kind of hope that's exactly what they took away from that morning.

Letter Writing Day

2011-05-10T21:07:00.000-04:00

Today's topic for Diabetes Blog Week is Letter Writing Day:

You can write a letter to diabetes if you’d like, but we can also take it one step further. How about writing a letter to a fictional (or not so fictional) endocrinologist telling the doctor what you love (or not) about them. How about a letter to a pretend (or again, not so pretend) meter or pump company telling them of the device of your dreams? Maybe you’d like to write a letter to your child with diabetes. Or a letter from your adult self to the d-child you were. Whomever you choose as a recipient, today is the day to tell them what you are feeling.

Dear 15-year-old Self,

If this time-machine thing works out as planned, it's January of 1994 and you're sitting in the car on the way to the hospital. Yes, you have diabetes. No, no matter how much you bargain with the ether, it isn't going to go away. You are about to enter a medical system that does not do well with informing young people of what is going on. So, let me give you the heads up on some of the things that are going to happen over the next eight days:

When your parents bring you toileteries from home MAKE SURE THEY BRING YOU SOME DECENT/NORMAL SMELLING SOAP. The Bacto-Stat soap they give you to use in the hospital smells like disease. So discomforting.
They are going to TAKE YOUR BLOOD EVERY FOUR HOURS, EVEN IN THE MIDDLE OF THE NIGHT. It will freak you right out the first night, because nobody told you it was coming.
They are going to WAKE YOU UP AT 6 AM THE FIRST DAY YOU ARE THERE. Since you are still practically in a coma you will do something (that maybe only you ever find) incredibly funny. Enjoy it.
That first morning they wake you up at 6 am THEY WILL BRING AN ENTIRE NURSING CLASS TO OBSERVE YOU. No one will ask if it's okay. They will just barge right in like it is their right to do so. If you don't want them there, tell them to leave... but not until after you do the incredibly funny thing.
There will be a nurse that comes in to your room. She will not even greet you. Whatever you do, DO NOT LET THIS NURSE GRAB YOUR ARM! She will take something called a Heparin Lock (or Hep-Lock). It will look like a long large gauge needle and she will just shove it in your arm. They will tell you it is so they can take blood from this IV instead of always taking it from your arm, where it will hurt and bruise. BEWARE: This is a lie! There will be only one nurse with the Heparin and she will generally not be available. Then, they will just take the blood from your arm anyways!!! So, for the love of God, I repeat: DO NOT LET THIS NURSE GRAM YOUR ARM.

In general, diabetes will be a lonely disease for a very long time. People will help out (and that will be awesome), but no matter how many are in the waiting room you still have to learn to go into those doctor encounters alone. Growing up people will feel badly for you, they may call you 'brave' or 'courageous'... even though you don't feel sad for yourself, nor brave about any of it. Don't let people treat you like your porcelain or fragile (I know that you won't!) Don't strive to be normal-- it's a bullshit social construct. Do visit the Banting House in London, ON sooner; it will give you a greater appreciation for wonderful it is that you get to finish high school, go to university (ugh, THREE degress... I know), make great friends and love a lot. Most of all feel proud of yourself, because you will handle a complex chronic illness (in combination with the lot of crappy life circumstances you already know about) with grace and determination... and that's all anybody can ask.

Sincerely and with love,

Your 33-year-old self.

Admiring Our Differences

2011-05-09T14:19:00.009-04:00

This week is Diabetes Blog Week and the first topic is 'Admiring Our Differences':

We are all diabetes bloggers, but we come from many different perspectives. Last year, Diabetes Blog Week opened my eyes to all of the different kinds of blogs (and bloggers) out there – Type 1s, Type 2s, LADAs, parents of kids with diabetes, spouses of adults with diabetes and so on. Today let’s talk about how great it is to learn from the perspectives of those unlike us! Have you learned new things from your T2 friends? Are D-Parents your heroes? Do LADA blogs give you insight to another diagnosis story? Do T1s who’ve lived well with diabetes since childhood give you hope? Pick a type of blogger who is different from you and tell us why they inspire you - why you admire them - why it’s great that we are all the same but different!!

I have a confession: I always thought that LADA or latent autoimmune diabetes in adults was just like Type 1, except in adults... BUT...

Not too long ago I was writing a definition about diabetes mellitus for a paper. I had a lot of resources about Type 1 and Type 2 diabetes, but nothing about that type somewhere in-between: Type 1.5. I found a snippet here and there in different books or articles, but couldn't find all that much. I thought maybe it would be best to ask a real expert about LADA and sent a tweet to @Diabetic_Iz_Me, a.k.a. Cherise, who has had LADA since 2004. Cherise referred me to one of her favourite sites: the Islets of Hope page. From there I was able to find a lot of references and information... and learn lots about how my assumptions of this Type 1.5 were WRONG.

From what I read (and please correct me if I am wrong) LADA starts off looking a lot like Type 2, except unlike Type 2 there are certain autoantibodies present that are linked with the destruction of beta cells. In Type 1 there are way more autoantibodies and the beta cells die off much more quickly, but in LADA there is only one or two of these autoimmune proteins and the pancreas cells are destroyed much more slowly. Every person's diabetes is unique and requires individual plans of care, but the average time it takes a person with LADA to require insulin injections is around 4 years. So, kind of similar, but still different. I was glad to have the opportunity to challenge my assumptions and learn something new. I was also glad to have someone open to questions and willing to inform (Thanks Cherise!).

Ghosts.

2011-02-24T13:50:00.004-05:00

So, I'm living with this ghost. Well, I am haunted by a lot of ghosts, but this one is different. Somehow, I'm not sure how.

I figured out what was making me sick. It's a long fucking story and I don't feel like going through it. Basically I figured that I have really bad reactions to milk and soy. I stopped eating it. You'd think that feeling physically better would somehow equate to feeling better mentally. Apparently that's bullshit.

I am stuck amidst piles of clothing, books, general junk and I can't remember acquiring most of it. I'm trying to write papers and I can't remember how to format my papers, let alone any of the articles I've read or most of the classes I attended. I feel like I'm cleaning out a dead person's house, except it's all my stuff. I don't know who I've been for the past year... probably longer. An existence of barely getting by is apparently pretty stunned.

In some ways now I see all these small things around me and am amazed. There are some things that seem almost magical. But they are also wholeheartedly overwhelming and painful at the same time.

I remember standing in front of the remains of this magnificent dead tree and focusing on it I thought for a while, "There's an entire live forest sitting behind this one dead tree. Why do you focus on the one that's gone?" But the truth of it is that focusing on either one doesn't negate the other. They both exist at the same time in the same place and reconciling that has been a bit much lately.

5 more sleeps...

2010-12-15T20:40:00.004-05:00

Five more sleeps until Endoscopy Day (as if it's some calendar holiday.) It should have been this past Monday, but Zuul the gatekeeper(she was very nasty) scheduled it a week later than the doctor said. It didn't dawn on me to argue.

I basically feel like I'm force feeding now. Food, all food, makes me nauseous. And, as noted in diagram above, that pain in my stomach has come back. Sometimes it hurts and wakes me up. I regurgitate most of my food, which is also not fun. I feel dehydrated all the time and my skin is peeling. The moral of the story is... why did I do this? I'm sure there was some logical reason. Right?

(Also, it's kind of peeving me that no one has asked if I needed anything during these past four weeks. Maybe people thought I would ask or something. Really, though, when someone says "let me know if I can help" or "do you need anything?" it's easy to just say, "actually if you can, could you pick up a few things from the store for me?" Having to ask something like that outright just feels rude and humiliating... especially when you already feel worn out and sick.)

Since my brain feels kind of sloshy I just make funny pictures now...

2010-12-07T00:14:00.002-05:00

UFO's: Sites of Infusion

Diabetes Social Media Advocacy Blog Guest Post

2010-12-06T16:19:00.006-05:00

I know this is a bit late, but I was a little out of it when this first posted over at the Diabetes Social Media Advocacy blog: http://diabetessocmed.com/2010/guest-post-by-virtue-b/

I'd like to say thanks to Cherise and everyone over at DSMA for allowing me the space to write. All the posts for Diabetes Awareness Month were great to read.

Thanks again,
V.

In the sea of endless night

2010-12-06T01:12:00.006-05:00

So, I've pretty much stopped sleeping.

I had problems with insomnia since forever, and maybe ten years ago started to taking an older anti-depressant at night to help me sleep. But in September when I stopped eating gluten and started feeling better I suddenly found I could sleep without any meds.

When I changed my diet I knew full well that eventually my doctors would tell me to start eating it again for about a month before the did an endoscopy to see if I did in fact have a detectable reaction to gluten. I had all these ideas that I would argue or put it off until I had finished school, but somehow in the doctor's office I didn't even flinch. I just agreed to start eating it again.

I thought, very briefly, it might be nice to have all the foods I had before... I even thought I might enjoy it. Make a list and eat whatever, just in case I find out I wouldn't be able to eat it again. I don't know how I could have been so ridiculously naive. I spent the first week in agony. I stopped sleeping then because I was in some serious pain. But, then it stopped. I don't feel any of that anymore.

Now, however, I feel like I'm losing my mind. I can't sleep. The other night I stayed up thinking of the same thought over and over. I have a rather disturbing temper now, which I think stems from the fact that I go through periods where I feel rather disoriented or confused. The other day I lost it and punched the side of my desk. ~~I didn't really think it was that hard~~ Okay, I punched it really hard and I punched it three times. My knuckles maybe had a bit of a black-eye for a while. It was one of those things that seemed helpful at the get-go (and honestly it was a pretty good release after a particularly stressful day), but turned out to be kind of stupid forever after thing. Also annoying, the bouts of spontaneous crying have returned. I got my flu shot the other day and there was a kid screaming and I almost completely lost my shit.

Let me tell you about my usual self: I used to work looking after kids. We were at the park one summer day. Somehow one of the spikes anchoring one of the swing sets had come unearthed from the sand. A little boy running around barefoot stepped on the spike and it tore into his foot down to the bone. His grandparents were kind of stunned and rushed him over to the fountain and just kept flushing the blood away. I walked up and asked if they had an extra diaper. I remember the man said something like, "Why would have a diaper at a time like this?" I calmly apologized for not elaborating and explained that if they had a diaper they could wrap the foot up in the diaper, tape it shut with the tabs and drive the boy to the nearest ER. So, I got them a diaper. They wrapped it up and away they went. I returned to playing with the kids without thinking twice about what happened (though I do remember somehow dealing with that spike too, thought I don't remember how anymore.) I miss that self, the person that could just deal with stuff. I'm not opposed to feeling anger or sadness or whatever, but I am opposed to it like this. It is not my normal.

Anyway, I have two weeks left of eating barf bread things and then the scope. I am not looking forward to the scope, but I think the doctor sensed the panic look in my face and mentioned they could give me something if I was really anxious about it. I just really don't like people near me in a way that I can't control. In the meantime, too, I've called the doctor that first prescribed those meds to sleep. I can work my head around self destructive behaviours for two weeks... if I have sleep.

I'm trying to keep an open mind about all this. I keep telling myself the tests might all come back fine. Maybe this is just related to other things. Secretely, though, this shit is not making me feel good. I think I just keep telling myself it's something else so I can push through the next two weeks. The truth is, after all this is done, I'm never eating gluten anything regardless of what the tests show. My body is telling me it's done. Even my blood sugars are messed, with unexplained lows after eating and equally bizarre highs at other times.

I miss sleeping and dreaming.

This is the long verions... (Part 2)

2010-11-17T19:43:00.001-05:00

So, this is part 2, after part 1. I started writing this when I wrote the first part, before I broke it into two parts. The original time stamp on this section read 12:58 AM October 21, 2010, but I never hit publish and instead it went through rewrites in bits and pieces since then... To be honest, I don't feel much like writing this part anymore, mostly because I'm tired of all this, but...

Bloodwork came back. Nothing. They found nothing. But, wait, I should rewind... It took everything I had to get out of bed and I was five minutes late for my appointment and the receptionist lectured me about being on time and told me that if I were late again the doctor would stop seeing me (I was obviously unwell or I would have schooled her on human rights complaints in relation to accomodating disability, but anyway... back to they found nothing...) I started crying (in part to the test results and feeling frustrating, but also in huge part because of the receptionist.) But then, the doctor wondered if I was perhaps depressed. In full-blown sob I said, 'No. I've never been depressed like this. I'm in pain..." I didn't even mention about the conversation with the receptionist. It was too much work. I did, however, manage to get sent to a rheumatologist.

They thought I had fibromyalgia, but after the appointment the rheumatologist said otherwise. She sent me for some more bloodwork. She didn't tell me what the tests were for, but I recognized the combination and names as those for lupus and rheumatoid arthritis. I was already on painkillers and she gave me enough refills to last the rest of my life. Those pills are the only way I managed to get out of bed everyday and go to school. I stopped cooking and just bought food. I stopped doing laundry. I stopped cleaning. I stopped doing anything unless I really had to...

On top of this my blood sugars decided to give me the finger. Within the span of about a week or two, for absolutely no apparent trigger/reason, my insulin needs skyrocketed. I have never had to call my endocrinologist to help me figure out how to manage my diabetes. I've been lucky in always having been able to manage on my own. So, when I called her office asking for help, she returned my call within half and hour and also got the CDE at a clinic I was registered at to call me. She just told me to keep boosting my levels until it evened out and to keep her updated. I think they stopped after I'd just over tripled everything.

Back to the rheumatologist- my tests came back normal. She eventually sent me for x-rays, because she tought maybe it was a bunch of other things and those came back fine. I was starting to get a bit peeved that all my tests were fine, but I was still feeling so shitty. I was also starting to worry that my doctors were thinking it was all in my head. I worried about that a lot, until one day I finally realized they just had no idea. I learned from all this that doctors (and maybe all people, really) are not very good at saying 'I don't know'. And, maybe they thought I thought they ought to know. I hope I didn't come across that way... I just really, really wanted them to know, which I think is a little different (thought perhaps is interpreted as the same as the former.)

Anyway, eventually the rheumatologist said something to the effect that she couldn't find anything physically wrong with me, so all she could figure was that my joints were joints were quite lose and could maybe cause the pain. Maybe I read that wrong, but somehow I took that as an I don't know. But, she didn't leave it at that-- she also said for me to come back in six months for a check-up and to come back right away if things got worse or there was swelling. That last part made a lot of difference at that point, because instead of being the 'I don't know, you're probably just depressed' or 'I don't know, it's probably just a virus', it was 'I don't know, but were going to keep on top of this until we're sure it's nothing else.'

So, I felt okay with that plan, but I was a bit skeptical of her diagnosis. Not because I didn't think her a capable doctor, but because I had a whole host of other symptoms that I couldn't explain with that diagnosis. By that point, my skin was literally peeling away in patches. I had parts on my scalp where if I scratched, I would get big clumps of skin peeling off; while after a shower, drying off my arms the skin would peel and look like little eraser bits. My hair was brittle, dry and falling out. My nails were brittle, peeling and breaking. My teeth were chipping on a regular basis and sometimes event felt like they were loosening. My tongue was flattened out and smooth. My saliva was disgustingly thick and I was majorly thirsty all the time. I was bruising, like massive bruising for no reason; while, any cut I had was majorly bleeding, even the pricks to my finger after lancing. My vision was messed. My feet and hands were tingling all the time. And my cognitive functioning was getting duller and duller and duller.... Until I started to have trouble telling the difference betweem dreaming and waking.

Even though a lot of things from the past year have been a little foggy, I do remember I kept looking at this picture:
Yeah, that picture. I couldn't figure out why I was so drawn to it. I mean, obviously, having diabetes and knowing the history of this photo (it is a picture of a child with diabetes before insulin), the picture is upsetting... But it took me until I felt well again to realize the underlying reasoning going on in my head; All throughout all of the doctors' appointments I've said the same thing over and over: I feel like I'm getting diabetes all over again- the thirst, the parched skin and lips, the lethargy... but there was something more to it that I couldn't verbalize and that was this: I felt like I was starving to death; that no matter how much I ate (and I ate A LOT) I was always famished. Except this time, instead of it lasting the few months it did with diabetes, this time it was going on for at least two years.

I'm not going to tell you what turned things around just yet. I've had too many times that I thought things had been figured out or at least on the right track, only to be disappointed. Also, I'm still very much in the middle of all this and I don't feel like I'm doing quite as good an explaination of everything as I would were it a bit more in hindsight... or maybe it's just too difficult right now. Anyway, tomorrow I go see one more specialist and I hope it is the last one with which I have to meet. I will let you know how it goes and what (hopefully something) is resolved from it.

But, in the midst of this I went to the rheumatologist... and she turned out to be really nice. She did all the usual doctor things of asking for symptoms and doing physical exams and ordering (more) blood tests. She also asked if I was doing anything over the winter holidays. I said I was just going to relax at home. She told me about how she usually goes with her friends to new york for New Years. In the end, she spent an extra fifteen or twenty minutes just talking about regular things and getting to know me... which eased my anxiety, if not physical health.

I stopped having those dreams when I stopped taking care of kids for work. That was maybe three or four years back and until recently, I'd completely forgotten about the nightmares. It wasn't the content that brought it back though, it was the reminder of the gut feeling that used to go along with those dreams brought them back to mind...

When I grow up, I'd like to be well.

2010-10-21T20:14:00.005-04:00

This is the long version... (Part 1)

2010-10-21T01:05:00.000-04:00

It says I started writing this 9/28/10 at 7:59 pm... I haven't been able to finish it, but thought maybe it would be easier broken up into a few posts. I guess this is part one:

----------------

It seems to me most people have a variety of recurring dreams; throughout the entire time working in childcare this was mine: I would have the kids with me. The kids would go missing, sometimes right in front of me... just disappear. I would go around everywhere asking if people had seen my kids. I would tell them that something bad had happened to them, that I thought someone took them. Reactions ranged from those people ignoring my like I was invisible to laughing at me. Eventually, I would find the kids- lifeless, in pieces, stitched into walls... I'd find them in a myriad of ways, but never alive. I would be really upset, because I knew it was going to end like that and no one had believed me or tried to help.

------------------

When I started feeling not so good was maybe five years back... Well, it was longer than that, but when things started to get on-again-off-again bad was about five years. First I started having really bad heart palpitations- they would knock the wind out of me. I saw a cardiologist. I had tonnes of tests- everything was fine. About a year later I returned to my GP. I would go through bouts of gasping for breath; I was tired all the time and thirsty, really thirsty. Went out for bloodwork; came back for answers- everything was fine, though slightly anemic. I was on iron pills for three months. The anemia went away, but my symptoms didn't. I was told it was likely a virus that would pass and was told to continue taking a multivitamin. Then, suddenly, everything I was complaining about went away.

That was fall. The following spring when my seasonal allergies started up: I. could. not. breath. I was given Ventolin and put on Advair. When that didn't help, they added more inhaled corticosteroid to the mix. I went from having blood sugars within range (with a good dose of regular bad lows) to having blood sugars around 20 mmol/l (about 360 mg/dl) all the effing time. I felt disgusting while I got my numbers under control... and then once allergy season ended, I'd stop the inhalers and deal with the opposite: major persistent lows.

This was just the beginning though. Every year since then my ability to breath, especially during allergy season degraded. Every time I got a cold (which went from about never to about three or four times a year) I would end up bacterial respiratory infections. I became familiar with the various ER's in the city. I've had x-rays and bloodwork at all of them. My inhaler medication just went up and up until it couldn't go up anymore. Sometimes it would get so bad I felt like I was drowning in my own phlegm. Again, I went for tests and breathed into all sorts of tubes- everything seemed fine. All they could figure was that it was some sort of allergy induced asthma.

And then this time last year, shit really fell apart. First, my skin started peeling. Especially from my scalp. I was parched all the time. Then my hair was falling out in bunches. My skin was bruising over the smallest bump and whenever I tested my blood I had times where I couldn't get them to stop bleeding. And, then, by this time last year I got tired... really tired... Like pre-insulin tired. I had times where I could muster up enough strength to get out of bed once a day. I would get up, practically crawl to the bathroom, clean up, grab a glass of water, go pee and make my way back to bed. The worst of it I remember lying in bed one night, my pulse had slowed right down and I had to actually make conscious effort to breath and in my head I was thinking 'If I fall asleep, I don't know that I'm going to wake up from this.' I fell asleep thinking of a list of what to do and who to contact in case I didn't wake up. I never wrote it down.

I can't remember now if it was before this or after that I went to my family doctor. I remember listing all the things that were happening and saying "I feel like I'm getting diabetes all over again." The colour drained from her face and she checked off almost all the tests on the bloodwork requisition sheet. This was the second round of bloodwork. She started prepping me for all the things that could be wrong. I remember none but the first- organ failure.

This would be the abbreviated version...

2010-10-19T23:14:00.005-04:00

I feel like I've been away for a while. I keep writing about stuff that's going on, but not posting them. It's been a shitty couple weeks... well, it's been a really shitty year. Today was not good. Crappy memories of crappy things and tomorrow is the graduation I would have gone to had I not gotten really sick this year. I was going to go, I guess for my friends, but now I really don't feel like it. I feel like a bit of selfish jerk, but I know it will go in one of two ways: I end up crying and feeling badly or I end up pretending it's all good and go cry on my own. I know in the long run it's not that big of a deal that I'm graduating later...

Really, it's not even about the graduating part. I'm just sick of being sick and not having people around that get what it's like. I've been better the last month or so after changing my diet a bit. I still don't feel very well whenever I eat. I think everyone that knew I was sick is just really happy I can get out of bed and do stuff again. I think they think it's over. Just a diet change and its done. All better... But, I still don't have a diagnosis of anything yet and I keep worrying that not eating gluten and dairy just helped, but are not the real culprits. Maybe that's a silly thing to think, but I've had so many tests where they were sure they knew what it was, only for stuff to come back negative... or other times where they were sure everything was fine, only to get frantic calls I needed other tests done ASAP, only to find out those scarry tests were actually false alarms. I don't think about a lot, but it's more of an underlying worry that they'll finally figure out what's going on and realize it's something aweful and something they could have fixed had they figured it out when I first started complaining about stuff.

I think that, all of that, is why I don't want to go my would-be grad... It is just a very strange feeling to watch people move on, while you lie stuck in a rather painful limbo.

Diabetes Art Day

2010-09-01T01:24:00.005-04:00

For more information on Diabetes Art Day, please see Lee Ann's blog post here: http://www.thebuttercompartment.com/?p=5441

Show-and-tell...

2010-08-09T10:41:00.003-04:00

I have rectified the aforementioned problem by introducing my pump to the entire office at this morning's all-staff meeting. I just said that I know people have had questions and, so, rather than repeat myself to each concern (which was getting quite stressful) I thought it best to just present it to the group.

I introduced several issues I knew to be of concern: I went through how the pump works, the various types of diabetes, the misconception that people have, like: somehow people with diabetes cause their own illness and that treatment starts with diet, then if it's really bad you go on needles and then if it's really really bad you end up on a pump. I relayed that the truth is there are various regimes for various types of diabetes and that everyone is different. I told them that I do not manage by diet, but rather I have an insulin to carb ration that tells me for every gram of carbohydrate I eat I know I take X amount of insulin to keep my blood sugar under control. I said that managing this way meant I could eat whatever I wanted, included candy and treats.

Finally, I told people I realized that their concerns come from a good place and I wasn't blaming people, because I realize there is a big public information gap regarding diabetes. I finished by letting people know it was okay to ask questions if they wanted...

I'm pretty sure, though, that I covered most of what people were curious about or had misunderstood, but we will see...

Tired of people "catching" me "sneak" sugar/candy at the office...

2010-08-09T00:41:00.010-04:00

(I don't need a f---ing lecture- it actually makes this all much harder to bear.)

The price of licorice...

2010-07-21T00:20:00.004-04:00

I was eating licorice and then someone said, "Hey, you're not supposed to be eating that." Someone else said, "Oh, no, are you diabetic." My brain said, "FUUUUUUUUUUUUCK." But my mouth said, "Yes, but I can have this." "Oh, you're a bad diabetic." "No," I pointed to my pump, "I just take more medication." (Probably not the best explaination at that point, but I was already flustered.) "Well, prevention is better than..." And I don't know what else they said, because then I felt really sad and embarrassed and just starting shutting people out. I felt like I should have been better prepared for this moment. It's not like I haven't had to deal with misperceptions of the 'betes before. But it was so innocent- a piece of licorice. I've eaten the candy put out before. So, it was completely unexpected.

I didn't know what else to do, so I put it out to friends on IM and Twitter: I just got called a bad diabetic :(

@JamieH responded: do you want us to send the D-mafia after them ?! ;-) ugh

@ElizabethArnold: By who???? (And did you kick them? Because if not, I will kick them for you. @JaimieH would too, I bet...)

AND

Hmmm...They should know better.Reminds me of 2nd grade when kids told me I shouldn't be eating Lifesavers. (I was LOW at the time.)

AND

All DOC tweeps shd take pics of ourselves eating candy for you to show 'em. Here's me, with liquorice! :P http://twitpic.com/273k5v

While, @scottkjohnson wrote: yeah, then start chasing them around with needles. :-) Or maybe @ninjabetic & I need to pay them a visit? We're pretty scary...

Moral of the story?

1. "Bad diabetic" is a pejorative term. It hurts. Don't use it... ever. If you want to ask questions (honestly, it gets old and kind of annoying for me, but...) it's better than judging.

2. Don't piss off the DOC.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Thanks for the support everyone, otherwise I would have hid in my office for the rest of the day and thought about all the things I should have said or done... even though it's not really my side of the encounter that should have to review anything said or done.

The kind of sad part is that I don't think I want to be going anywhere near the candy jar anymore, or at least for the next little while. I don't want to deal with that spectacle again. I feel kind of whimpish for admitting that, but it's true.

Death of a pancreas... Again!

2010-07-14T19:07:00.002-04:00

I got water in my pump. Actually, that makes it sound like it was my fault- they told me it was waterproof and though it has been for the past two years, it was not this weekend: I was swimming and when I got out there was water behind the screen. The pump worked find, but I thought I should call tech support and let them know. They told me they would send me a new one to be safe... And I had to send pump-kin back to the Animas :(

This is the hearse they sent for pump-kin:
Bye, bye pump-kin :_( Thanks for the past two years. You made my life much easier and I'm glad that you at least got to stick around for the canoe (bestest ever) trip on the week (<--- more about that later, btw!) For reals, though, it felt kind of sad... and I, ahem, did kiss the pump goodbye. It was weird to see it in the 'mail out' box at work, knowing no one else knew the history and significance of the device sitting inside the package. Next glucose tabs I (figuratively) inhale in a fit of low blood sugars, I will ingest for you...
Oh! Why hello birth of pump-kin jr! And, so, we start again...

("It's ALIVE!!!" ~Frankenstein)

(PS- pump-kin jr has much more sealant around the screen. I thought maybe that was the problem, because I couldn't see where else the water could have come from and I could shake the water out... probably the latter point was most indicative!)

A hospital envelope surprise.

2010-07-12T22:15:00.003-04:00

I came home to find a letter from the hospital that I visited back in May. I thought at first it was asking for a donation, but when I opened it the letter was a survey asking about my experience! There were about fifty or sixty questions in total and a spot to relay extra information about the visit to the ER, all of which I obligingly filled out. I was very happy to fill it out for several reasons:

1. It's so very rare that we, the patients, get to give our feedback.

2. I was glad I got to speak to more than just wait times. These were some of the questions I that I found more thoughtful: "Did the doctors/nurses talk in front of you as if you weren't there?" "If you had any anxieties or fears about your condition or treatment, did a doctor/nurse discuss them with you?" "Did you have enough say about your care?" "Did someone in the Emergency Department help get your messages to family or friends?" I like these, because it shows that there is an understanding that hospital experiences are not just about expediency, but also about comunication and respecting patients feelings during what can be very stressful times.

3. In the space provided I was able to tell them that, while I found most nurses be attentive, kind and knowledgeable and my doctor was really superb... there was still that one nurse to whom I relayed the fact that my blood sugars were low and it took her a whole 10-15 minutes to bring me a rather small glass of juice... and the only reason she gave it to me at all was because they were taking me to x-ray and I passed her in the hall- she'd left my juice on the counter at the nursing station. (For some reason I failed to mention this in my original post- somehow I just forgot about it!)

Anyway, the moral of the story is that I wish these questionnaires were a more regular thing. I've had a number of visits to ER's (though curiously, never for the diabeetus... except for diagnosis...) and this is the first time ever I've received anything like this. Who knows if they actually listen to what is written, but I'd like to think that if they took the time and money to send out the survey in the first place, they too take their patient's needs and wishes to heart.

MacGyver Moment: Portable Strip Disposal

2010-07-05T20:53:00.008-04:00

I got fed up with finding test strips EVERYWHERE! So I went to the drug store and started searching for some sort of cylinder/pill-box on a keychain (<--- apparently it's called a "pill fob")... VOILA! MacGyverism! Attached to the zipper of my glucometer is my new used test strip garbage bin.

Would it really be so difficult to include this in the first place, glucometer manufacturers?!?

Dear Feet,

2010-07-04T02:04:00.004-04:00

I am sorry that I have neglected you. I did not know what could happen. I mean, I knew in theory, but reading through a book for school on diabetes I came across some truely painful photos of gangrene and infection. These pictures showed a much sadder picture than what I'd understood the issue to be.

Now, I can't promise any outcomes (as I am sure you are aware, sometimes these things are about chance), but I can promise to be more aware of how I treat you. I have bought you some nice foot cream and will be checking in on you every night from now until forever.

Be well, and thanks for hauling my ass around every day...

Love,
V.

PS- I am also sorry that in a fit of irony I accidentally dropped the rather heavy bottle of foot cream I bought for you on you and bruised you.

To Whom It May Concern:

2010-07-02T15:21:00.007-04:00

I am writing you today to ask that a new feature be allowed for glucometers. More specifically, I would like there to be the option to replace the "HI" and "LO" warnings with "FML (HI)" and "FML (LO)", respectively.

K, thanks so much... Bye.
V.

Questions to an X-Ray Technician...

2010-06-29T01:06:00.007-04:00

So I moved my rheumatology appointment up two weeks, because I've had really bad back pain lately. Usually it's mostly in my hip joints and lower back, but the stiffness was the the point that it was throughout my entire spine in the morning, culminating in me not being able to touch my toes or move my head around to look past my shoulder. I went in today and had about a dozen x-rays taken of my back and hips. The technician was so polite. He kept saying sorry every time he had to adjust my hips for the image. Eventually I told him it was okay, he didn't need to apologize, I'd had enough x-rays done over time I knew the drill and it was okay.

And then, as I was lying on my back looking at the muted orange pot-lights that seem to line all of these diagnostic rooms, I thought "I guess this is not everyone else reality." Which is kind of dumb that it's somehow taken me this long to realize. I think I know the x-ray set up in every hospital in central Toronto. I know which hospitals have the nicest staff at their ER's. I can tell you how long you'll likely be in an ER depending on the location and the time of day. And when I think about moving, I think about proximity to hospitals and doctors. Anyway, that's just a tangent... Back to the x-rays: I was lying on my back looking at the lights and for some reason being in a clean gown (no matter how fugly it is) and lying on clean linen and being gently proded around I suddenly thought, "I feel like a baby." And then I almost started to cry... But then I thought, "OMG, Virtue, don't you dare start crying here" and tried to imagine the uncomfortable converstation that would ensue with the very polite technician.

In the end, I got up and asked my standard x-ray technician question: Do you look at people differently after being able to see their insides all day? (It's part of this stupid experiment I have going. There's no real purpose to it, I think I figure if diabetes changes how I look at all things food related, then maybe taking x-rays does the same? I also wonder how people get their heads around seeing someone's bones, but then having them as a real person in front of them. It just seems weird to me. Don't know...)

This round's technician's response was a little different, because I think I was kind of nervous after nearly breakind down in the room... I think he thought I asked if all x-rays looked the same regardless of person? At any rate, his response (and I'm paraphrasing, of course, so take that into account) was that people pretty much look the same in x-rays, unless there is obvious trauma; just some people are bigger and some people are smaller.

I just realized, as writing this, I think he was actually a really good technician. I don't think I would have felt like I could feel emotional and present about things if I wasn't comfortable/feeling safe with my surroundings.

(I covertly took this picture for your viewing pleasure!
Apparently it is me/patient carrying an old TV with my bones in it!)

Today is National Aboriginal Day

2010-06-21T22:46:00.014-04:00

So, since here in Canada today is National Aboriginal Day I thought I would speak a bit about diabetes in Canada's Indigenous communities. First, there are three different groups understood as 'Aboriginal' in Canada: First Nations, Inuit and Métis. I know of a lot of documents relating to statistics and understandings of wellbeing from First Nations perspectives, but there seems to be much less information regarding Inuit and Métis peoples. Contrary to the many myths purported by Hollywood and pop culture there are many different communities of First Peoples in North America. However, there are some general similarities between various First Nations perpectives of health. The most glaring difference is that while mainstream medicine sees only the physical; while First Nations understand that wellbeing includes the physical, mental, emotional and the spiritual. That's is just the surface of differences, but I think it is enough that you can see the two views, although both concerned with wellbeing, come to this understanding with very different concepts of what is worthy of focus. (If you wish to read more, I think that the First Nations Regional Longitudinal Health Survey: The People's Report has a nicely illustrated outline that goes through the differences and similarities of First Nations and Western understandings of health.)

As you can imagine, study after study illustrates that misunderstandings and racism are commonplace in Aboriginal peoples encounters with mainstream health services. I don't think it takes a genious to see that if Western medicine only considers the disease, than it is ill equipped to understand the various cultural and racial issues at play in these encounters. Take for example Catherine T. Elliott's narrative:

When I was a medical student, one of my teachers warned me to be wary of misunderstandings that could cloud my judgment. He described a case in which the powerful negative image of “drunken Indian” impaired a physician’s ability to assess and treat a man with diabetic ketoacidosis. The aboriginal patient waited in a wheelchair in the waiting room for several hours until the next physician came on shift and discovered the error.

While, she goes on to note:

In medical school, one of the first “facts” learned about Canada’s aboriginal peoples is that they have poor health status and experience substandard social and economic conditions. Many of us do not come to understand the historical and social contexts of these facts. This can lead to a sense that “being aboriginal” means having poor health and social conditions. This belief might leave us vulnerable to adopting common social stereotypes.

The practice of conflating health outcomes with cultural norms, when they are better explained by social, political, and economic factors, has a long history in Canada. It can occur when members of one group become marginalized and impoverished, and their behaviour in response to the marginalization is deemed “part of their culture.” For example, in the early 1900s when First Nations in British Columbia were separated from their land and resources, their ways of life changed from migratory to sedentary. Previously healthy living conditions became unsanitary, and high mortality rates from infectious disease ensued. The historical record suggests that First Nations themselves were blamed for their poor health, without an appreciation of the social effects of this dramatic change in way of life. Poor health was deemed “an inherent part of indigenous lifestyles.”

These last points, I think, are especially pertinent to diabetes. With colonization came the stress of displacement, genocide and residential schools (also see: Where are the children?) and a shift from traditional diets to Western foods- processed, rich in carbohydrates and fats. Diabetes, in this case, is not just an illness of the body, but also one of colonization... but is also now one of epidemic proportions in Native communities.

Consider these research findings:

"Diabetes among the non-reserve Aboriginal population was most prevalent in the North American Indian population, where 8.3% of the population age 15 and over was diagnosed with diabetes, as opposed to 6% of the Métis population and 2.3% of the Inuit population.

Rates of diabetes have risen for North American Indian adults not living on reserve since 1991 when the rate was 5.3%. Rates for the Métis and Inuit changed only slightly: 5.5% for Métis and 1.9% for Inuit adults in 1991.

According to Health Canada, there is evidence that the prevalence of diabetes is higher among the Aboriginal population living on-reserve. (Health Canada 2000) If this group were included, it is likely that the rate of diabetes for the total Aboriginal population (both those living in reserve and non-reserve areas combined) would be higher than 7%." (StatsCan)

More recent statistics note the prevalence of diabetes in First Nations adults is closer to 14.5%. While "among First Nations adults with diabetes, 78.2% have Type 2 diabetes, 9.9% have Type 1 diabetes and 9.8% are in the pre-diabetic stage." (RHS: The People's Report)

The average age of First Nations youth diagnosed with Type 2 diabetes is now 11 years. (RHS: The People's Report)

In research conducted between 1980-2005: "The prevalence of diabetes increased over the study period from 9.5% to 20.3% among First Nations women and from 4.9% to 16.0% among First Nations men. Among non-First Nations people, the prevalence increased from 2.0% to 5.5% among women and from 2.0% to 6.2% among men. By 2005, almost 50% of First Nations women and more than 40% of First Nations men aged 60 or older had diabetes, compared with less than 25% of non-First Nations men and less than 20% of non-First Nations women aged 80 or older." (Dyck, Osgood, Lin, Gao, & Stang in Canadian Medical Association Journal)

"In addition to high rates, according to Health Canada, diabetes is a significant concern for the Aboriginal population because of 'early onset, greater severity at diagnosis, high rates of complications, lack of accessible services, increasing trends, and increasing prevalence of risk factors for a population already at risk.' (Health Canada 2000)." (StatsCan)

Below, I have embedded a National Film Board of Canada short-film by Brion Whitford, an Ojibway man living with Type 2 diabetes. The piece follows Brion as he learns to deal with his diabetes by learning about his heritage. For various reasons, the film is sometimes hard to watch, but I think the lessons described and put forth are quite honest and touching.

(PLEASE NOTE: some of the scenes can be difficult to watch, especially if you or a loved one has diabetes and/or experienced colonial traumas. The film starts with Brion losing kidney function and having problems with circulation, in addition to struggling to find balance and health with diabetes. Also, there is one discussion where a man talks about losing his mother to diabetes and it is somewhat graphic... Just thought I should mention...)

Finally, I realize that in discussing illness there is a tendency to focus on deficit. I think it is important to remind people that (like all groups) while there are negatives there co-exists many positive facets to Native American communities. To this end, I would like finish here by sharing this most recent post by Adrienne over at (one of my favourite blogs!) Native Appropriations: Between Pageantry and Poverty: Representing Ourselves

Right so...

2010-06-07T23:10:00.002-04:00

Today's been a tough day. I don't know how to explain it proper. And maybe I feel partially awkward about it, because I feel awkward talking about my thesis... Because, well, my thesis is about my experiences with blogging about diabetes. It maybe doesn't sound that novel here, but social work seems to be all kinds of out of touch with technology. I find a lot of the literature that I've read is very quick to discuss general problems in social media (like privacy), but not so good at discussing specific issues with specific applications (practical recommendations to discuss with service-users) and really rather bad at checking out a lot of the potential benefits. To be honest, most of the articles seem like the authors don't even use the tools they are describing... Anyway, I wanted to talk about all the issues and the good things that blogging and social networking can be for people with a chronic illness like diabetes.

So, I went to talk to my thesis advisor and something rather unexpected happen: she asked me what to pin-point what blogging has done for me... which caught me off-guard... and I kind of stumbled a bit... and blurted out... "it's been a mourning process." Oops? I started to cry and tried to explain: before I found people like me online I knew no one. I was all alone in diabetes and the only talk that occured around it was medical speak. So, I only ever considered it in medical terms and that made it a very cerebral kind of experience. It wasn't until I started connecting with other people that it became emotional. And, it wasn't until it became emotional that I realized my body's broken and it's never getting better.

The one and only time I can remember thinking that I really needed to connect with people (preferably my age) with diabetes was a few years after I'd been diagnosed. I remember calling the Canadian Diabetes Association asking if they had support groups for people with type 1 diabetes. The guy on the other end said that there was nothing (in the entire effing city of Toronto!) I felt a bit teary and I remember his demeanor changed from sounding more professional and formal to seeing if I needed to talk to someone right away for support. I don't know who he would have sent me to talk to, because as far as I could tell there was nothing. I ended up making like it wasn't a big deal- that I was fine, but was just checking things out. After that I grew up pretending like diabetes wasn't that big of a deal. I just talked about it matter of fact. When people had issues with needles and blood, I quietly went elsewhere to do my testing and take my shots. I didn't complain about it. I didn't talk about any of it. I just did it. Nobody ever questioned it, and I don't really blame them: I did such a good job at pretending, I even had myself convinced that it was all fine.

Anyway, I'm feeling it now. I don't think that's a bad thing. I think it's an about time thing, actually. I still find it kind of curious though that in modern medicine it somehow only counts if your body is working well; while most times it seems like no one checks to see that your psyche is also getting what it needs to be well and thrive.

(I'm mostly okay with the broken thing, btw... I'm really not digging the forever and ever part though. Yeah, I mostly feel sad about the forever and ever.)

Sometimes I feel like I'm on a different planet...

2010-06-05T02:39:00.006-04:00

I was in a coffee shop reading for school. I was reading an article about patients writing illness narratives. It was arguing that such stories can be seen as a political act against a biomedical model that sees patient merely as disease and not as an whole being. I have issues with some of what the authors argue. I don't really see one nice neat narrative in illness. It's more like different stories of good days and bad days and, while, there might be a beginning, for people with chronic illness there is no end, or at least not in life.

When I got toward the end of paper I started to tear up... which was kind of weird, because I still wasn't into the article. By the end it argues that nurses are in a position to dialogue with patients and create a sort of co-constructed narrative of illness that suits both the practictioner and the patient. Fair enough, I guess, but I just didn't find it incredibly mindblowing. So, I couldn't really figure out why I was suddenly all choked up...

And then I realized that this was playing in the background:

How did we stop listening and seeing one another to the point that we have to write hundreds, if not thousands or millions of pages about love and care? And only to be one-upped by a simple love song playing in the background of a coffee shop?

Quite very simply: I just need you to stand with me-- not ask me inane questions about my medical devices or condition for your own purpose or judge me or tell me I'm not trying hard enough... Just stand by me.

Coincidentally, I came home to find this on my facebook feed:

Oh, wait...

2010-05-30T14:09:00.004-04:00

When I thought about the idea of a cure for diabetes this morning a picture of myself jumping up and down and dancing and yelling/singing "Cure! Cure! Cure!" on the grass of my front yard flashed through my mind... So, I guess my reaction would depend on the day that a cure arrived.

Dream a little dream- Life after a cure... Diabetes Blog Week- Day 7 (Ha! I did it!)

2010-05-27T21:55:00.007-04:00

Lightyears ago, when I was working in a little used bookstore on Queen Street, my boss told me this story about his brother... He said that his brother had a form of epilepsy. I don't remember the name of it exactly, but he had frequent and severe seizures. He was on a fair amount of medication to curb them, but at some point brain surgery became an option. So, he went through with the surgery and the doctors were fairly certain they'd removed the part of the brain that was responsible for the seizures. He was so terrified of them returning though, he refused to stop taking the medication they'd first prescribed him.

I tell you this, because it was one of the first things that came to my mind when I read this final topic for the Diabetes Blog Week was this story. And, honestly, if suddenly the perpetual five-year-plan until the cure for diabetes was up and sitting there was a cure... I think I'd still be testing my blood sugars for a good long while after: Every time I got thirsty. Every time I felt tired. Every time I got shaky. And, yeah, it would probably subside a bit over time, but I'd always wonder if and when it were coming back.

Another story that came to mind: when I started using an insulin pump it totally a positive change for me... physically. For the first time that I can remember I wasn't tired all the time. I think I mentioned somewhere here before, but when I told one of the nurses/diabetes educators helping make the transition to the pump she told me that this was fairly common. Apparently long acting insulins are pretty hard on your body. NPH, the crap stuff that I was on for a large part of my MDI routine, is notoriously nasty... which why it is affectionately referred to as "Not Particularly Helpful" amongst some medical professionals. That plus the fact that I spent years with impossible to avert daily lows, some of which were so low I felt like they were digging my grave for me, I got kind of pissed off that it took sooooo long for me get on the pump.

Actually, I don't even think I realized until I just wrote those words, that a lot of my anger when I got my pump was probably related to me being resentful for all those years of crappy insulins (remember the infernal Regular and Lente???) and multiple daily injections. I know it works great for a lot of people. But, really, that stuff was my own private hell, which is something I couln't realize until a better way of being came along... kind of what I think the shift from insulin pump to cure would be like...

Finally, my very first knee-jerk reaction when I read the topic for today's post: I've met so many awesome people because of my diabetes, I have to admit that I had a moment of sadness thinking that our relationship might go away without the common link of illness. Which I know isn't true- I think the relationship would just change. We might not have the same day to day struggles with the "D-beast", but I think we'd always have the lingering link of being ex-D-beast peoples. At least, I hope we would all stay in touch. I would miss you guys if you all went away. I guess the second thing I realize as I write this- my online D-friends aren't just diabetes support; sometimes you guys are life support. Which is great, so I wouldn't want that side-effect to be cured along with the broken pancreas.

Anyway, I don't mean to end the week on a bummer note. Nor do I don't mean to suggest that I wouldn't jump at a cure in a nano-second or that I wouldn't be happy (extremely happy!) or grateful. I think, though, that having recently just made the shift from needles to insulin pump, the reality of good things sometimes being a mixed bag is still very much a reality for me. And, maybe like most things in life, it's just complicated.

Here, though, I'll end with some happier thoughts:
- Having said all that, I'd totally test the limits of my new found food freedom by a one-time gorge on deep-fried ice cream. I don't know why, but I really get a hankering for that stuff every now and then... and cherries. I really like cherries... and pie. Cherry pie, of course. Stawberry-rhubarb too. Pie is one of the worst things to carb count.
- I think I'd also keep my pump by my pillow as a nightlight, 'cause I've gotten kind of attached to the little guy. I might even wear it around in public occassionally and tell everyone it's my new super gigantic pager...
- And my last, somewhat perverse thought? I'd tell everyone my diabetes was coming back in five years... just so that if it really were creeping back, it would take it's dear sweet time about it.

Diabetes Snapshots... Diabetes Blog Week- Day6... almost there!

2010-05-26T18:55:00.001-04:00

This is Pump-kin...

And this is my relationship to Pump-kin in pictures...

For better or for worse, we are attached at the arm.

Let's get moving... Diabetes Blog Week- Day 5 + then some...

2010-05-23T15:19:00.005-04:00

Oh, exercise. It's kind of difficult when you're in school to do anything but school... But, I try!

I used to run, but my hip joints are kind of messed up and running started to really hurt. So, that was the end of running. Instead, I walk a lot now. Usually about 45 minutes to an hour everyday. I should really do more variety of things, but right now it's kind of difficult because it's finals crunch time. It's kind of frustrating, because it ends up affecting my weight and, or course, my blood sugars.

You know what keeps you pretty active though: looking after kids! More specifically, I would say, the younger the kids and the greater the number the greater the work out! I worked as a nanny for like 10 years throughout my first degree and several years later. I noticed the biggest difference when I looked after the three young children I was with for about five years. Whenever I was on holidays my blood sugars would go up and then I'd adjust my insulin to compensate... and then back down again once I started working again. I was always amazed how much less insulin I needed going back to work... I guess lifting, carrying and running after twenty-some-odd pounds of little people throughout the day adds up!

The other thing that would need to re-adjust when I went back to work is my tolerance for noise, but that's not really diabetes related ;-)

To Carb or Not to Carb... Diabetes Blog Week- Day4 + then some...

2010-05-20T19:39:00.007-04:00

I'm a carber. I like carbs. Maybe even too much.

I think I learned how to stuff my face a little too well when on MDI. Because I always needed half-doses of insulin I had to eat to cover my insulin a lot. I don't think I fully realized how many carbs I was eating until I started on the pump and things got much more precise. I was glad for that, because it meant I have a lot fewer lows... but it was a little shocking! Also, I found that some carbs that were okay on MDI are just too difficult to bother with (at least on a regular basis) when I switched to the pump. Pasta and rice are a pain. I always end up spiking at some unforseen time. And, bread is just tricky to judge...

Anyway, basically I like carbs and I'm going to continue liking the carbs, but we're still figuring out how best to work together :)

I thought this was a funny carb joke... meat is soooo clueless ;)

I don't know what to do with this:

2010-05-17T22:57:00.003-04:00

I have this seminar class for my MSW where we discuss our major research paper (kind of like a thesis). It's not a regular class; it happens maybe once a month. Today was one of those classes and something keeps happening that I don't know what to do about...

One of my friends in the class is doing hers on the narratives that people construct around their illness. My friend's thesis is particular to experiences of cancer, but we talk about illness more generally too... The weird thing is that everyone in the class talks about it like I'm not there or, at least, like I have no experience of living with an illness or condition. It makes me feel weird every time... Actually, it makes me feel sad (I maybe had a bit of cry when I got home and thought about it).

I don't know what to say though. I don't want to make other people feel weird or guilty or, worse, become the token sick person that everyone is worried to make a comment around.

Well, I just needed to spew that out somewhere... So, there it is.

Your biggest support(er)... Diabetes Blog Week- Day 3 + then some

2010-05-17T20:11:00.004-04:00

Right. So, back on track here... though a little late.

When I was in the ER I thought about this question a lot. Who is my biggest supporter?

Well, if I had to choose a biggest supporter(s), it would be the D-OC. I don't mean that my parents and my friends aren't supportive, but before I found out there were all these people online with diabetes I felt really different and no one really understood any of what it was like to live with diabetes.

Particularly poignant in this journey was when I got my insulin pump. I was really excited before I got it, but once I had to wear it all the time I realized that diabetes was no longer something that I could test, inject and then put away in my bag- it became something that was with me all the time. My pump became a memento mori of sorts, always there to remind me of the diabeetus. And, from there, I felt an anger about having diabetes that I'd never felt in my life. I got angry that everyone else I met got to eat whatever they wanted and didn't have to input it into a stupid machine. I got angry that my body failed me in a way that no one else understood. And then I got super angry and sad when one day I got on the subway are realized that everyone was starring at my infusion site on my arm and the pump on my hip... I got angry, because all of the sudden I realized I'm different and there was no one around who got any of it...

I know a lot of people read about my visit to the Banting House museum back in January where I think I came to terms with a lot of the major angry feelings that were bothering me (I say MAJOR feelings, because I still have those days when I want to throw my pump and meter across the room!). But, anyway, coming to terms was some of that stuff wasn't just about the visit. I think it was also because for the first time in my life I had people to talk or even just see online that were like me. So, whether I talk to you about diabetes or read your blog or just even see that your online... and whether you have diabetes or have diabetes by default because you are speaking up for a loved on... I think that you guys are my biggest supports and supporters. I'm really glad I stumbled onto you all and thanks for making me feel at welcome and... dare I say... normal.

From the bottom of my pump heart: Thanks.

Diabetes Blog Week... THWARTED!

2010-05-16T01:42:00.000-04:00

Well, seems like Lungs got jealous of this weeks spotlight on Defunct Pancreas and decided to rebel. On the weekend I stayed at a friends house, looking after their kids while they went out. I started feeling kind of wheezy and my airway started kind of constricting. I'm allergic to a lot of frangrance and this has happened before. Usually, once I get away from whatever it is that is bothering me, the difficulty breathing dies down. But it kept going... for one day... and then two days... and then on the third day, I started scaring my co-worker with my gasps for breath throughtout the afternoon. I got home and it got worse. The steroid inhaler that I take everyday wasn't helping. I finally decided it was time to haul out the Ventolin, but it did nothing to help either (except annoy Defunct Pancreas and raise my bloodsugars).

I kind of knew at this point that I was in trouble, but I play this silly game whenever I realize I should visit the ER. In Ontario the government has a service called Telehealth, whereby you can call a number and speak to a registered nurse about medical questions/issues. So, my silly game is that every time I know I should see a doctor I call them first. In my defense, though, sometimes they actually tell me it should be fine to wait to see my family doctor! This was totally not one of those times and the nurse on the other end told me to get my ass to emergency... and, so, I went...

First thing- visit triage nurse. They are generally grumpy creatures. I don't really blame them; they're the gatekeepers and I imagine they get bugged a lot, but at the same time it is kind of annoying to be the patient on the receiving end of their grumpy... especially when you can't breathe. She looked at my last name and said "Well, that's a weird last name." Then she reached my first name and said, "Oh, well, that's a weird first name so." She didn't comment on my middle name... because it is run-of-the-mill anglo-saxon? Don't know... Anyway, when I told her I was having trouble breathing she told me I seemed to be able to talk just fine. In my mind, I responded something like "Right. I'm just effing with you, 'cause sitting around in the ER is much more palatable way to spent my night than sleeping in my warm bed." In real life, though, I just said, "Oh, it's just my airways feel really constricted." Eventually, I got the wristbands and got to sit back down in the (aptly named) waiting room.

I'd been through this before and knew that if it being around 11pm when I arrived and not being in any sort of acute/dire emergency, I'd be leaving aroun 5am. I hunkered down and started to read school stuff. South Park was on... then some cosmetics advertising show... then Anderson Cooper... then... I don't remember. At some point I got called in to sit on a bed for about twenty minutes before seeing a doctor.

I don't particularly like ER doctors. I've had some really nice ones, but every now and then you get the jerks. (Remember that time in high school that I went to the hospital because I was throwing up everything under the sun, but had just taken a huge amount of insulin... and they "diagnosed" me with a stomach virus (as if I didn't know!), gave me a shot Gravol and sent me home, telling me I didn't need to be in the ER? Or how about the time I had a head injury and they told me the pain was from diabetes?) This time, though, the doctor was awesome! She listened to what I had to say and didn't relate any symptoms to my diabetes (bonus!) and was actually kind of funny (double bonus!)

Then, I went to a set of chairs to wait for chest x-rays to be done. The guy to my right was an older man with his son, who had hurt his foot. The guy to my left was a younger guy that had hurt his ankle... and the guy to his left... I don't know why he was there. He was missing his front teeth and was waiting for an x-ray of his neck. I don't think those things were related though. Everyone was really nice. Mostly we just sat in silence, but every now and then the older man beside me would grumble about the wait. I was the second last person to get x-rayed. The technician, coincidentally, also was missing his front teeth! Hockey players? Maybe not...

X-rays were good though! They let me look at them and the doctor pointed out what all the different parts of the images were... I liked seeing my heart in the middle (well, technically, slightly to one side) of my rib cage. That plus all the bones looked pretty together and I was glad to see that my insides didn't look nearly as bad as I felt they did... In the end, the doctor said that some of my lymph nodes were swollen and she suspected I was getting a cold, which exacerbated my allergies/asthma. She sent me home with a new Ventolin puffer at a higher dose. I had to take four puffs while I was there, before I left. Which, on my way home, led to me hack up a tonne of grossness that had been trapped in my lungs. Sounds icky, but it was the best feeling afterward.

I was back home and in bed by 5am. I thought that was pretty good time. I'm still not breathing the best, but am not to the point that I'm whistling through my throat/seeing stars... Oh, and I did end up getting that cold (high-five best ER doc ever!). I'm hoping when it passes, things will go back to (my) normal.

So, that's the story of my jealous Lungs and their attempts at glory. Sorry about missing out on the scheduled posts... But just to teach Lungs a lesson, I plan on completing them anyway over the next week.

Making the low go... Diabetes Blog Week- Day 2

2010-05-11T11:40:00.006-04:00

I'm not really liking this post topic... My pancreas still makes some insulin, so I don't need super lot of insulin injected. That's lucky in some ways; not in others. Before pumping I would have to eyeball half units on my syringes. It was hit and miss and usually I missed... meaning that I had a lot of lows. A lot of really really bad lows. It got so that I couldn't even feel it until I was around a 1 mmol/l (18 mg/dl)... and that's how learned to over-eat a low: EAT. EVERYTHING. IN. SIGHT. Anyway, eventually I figured out that if I just didn't eat, I didn't have to bolus and I didn't have to go low. Which, I'm sure you can guess, started a whole new problem.

Things have gotten better the last year or so that I've been on the pump. I have a low maybe once a month and can feel it now at around a 4.5 mmol/l. I usually just keep a juice box in my knapsack to treat a low. If it's not too bad a low though, I usually just dial down my basal for a little bit to cover the lower blood sugar... And, to be honest, that's probably my favourite way to treat a low. I've gotten sick of stuffing my face.

A day in the life... with diabetes: Diabetes blog week-- Day 1

2010-05-10T12:33:00.009-04:00

Well, to explain the beginning of my day we have to revisit the night before when I take an itty-bitty amount of an old-skool anti-depressant that makes me drowsy so I can sleep... You need to know this because the beginning of my day is usually spent in a bit of a slow fog. Which means that mornings are scrunched for time, but a bit slow, because I usually end up sleeping in more than I meant. Inevitably what insues is:

Go to bathroom and wash face, take puff of Advair inhaler (only during allergy season), rinse mouth to avoid the side effect of thrush and brush teeth... if I'm actually a bit early in my schedule I may decide to put on mascara
Get dressed, which usually entails having to figure out how to untangle my insulin pump tubing from my bra strap and/or any other piece of clothing it decides to wrap itself around in a completely uncomfortable way
Pack my bags (I know, I should do this the night before!)
Race through the kitchen and grab a breakfast pita/granola bar/fruit and juice box
Walk to transit (either subway or streetcar)
Sit down to ride to placement or class, test my blood sugar, eat, bolus, take anti-depressant and maybe painkillers (over-the-counter or perscription for joint pain)
Start the day

What follows depends on the day and what I am doing, but tends to look a bit like this:.

I test my blood sugar and eat lunch around 1pm. To be honest, I eat a hefty lunch. It is my biggest meal of the day. So...
I test my blood again in the afternoon. It's usually fine, but sometimes hefty requires an extra little bolus.
Around 5pm or 6pm I usually end up walking home from downtown, where class and placement happen. It's about a 45 minute walk. Sometimes, depending on how I'm feeling I test my blood sugars toward the end of the walk or when I get home.
Some days joint pain is worse in the evening, so maybe more painkillers or a nap. When pain is bad, inflammation is bad and blood sugars are bad, so I end up testing and correcting more throughout the evening.
Otherwise, I usually (check my blood sugars) have a snack in the evening and sit at my computer and do school work.
Around midnight I have my shower, check that my site is ok after (and check that I've reattached it before bed! It happens that I forget-- though I've always remembered once I get into bed and move to place that technical appendage just under my pillow...)
I take my smidgeon of groggy pill, a multi-vitamin and eventually fall asleep... zzzzzzz

And voila! That's the average weekday for me this year.

PS- to read about the idea of Diabetes Blog Week, please see Karen's Bitter-Sweet Diabetes Blog

PPS- to read the posts of other participants, please link here: Participant List

PPPS- Mid-afternoon UPDATE: oh, and today's day-in-the-life also included buying supplies... Two boxes of infusion sets, a box of insulin cartridges, some skip prep... all to last about two months = $441.46 CAD... I'm lukcy in that I get the money back from the provincial government eventually, but sheesh!

Little known fact...

2010-05-02T13:47:00.002-04:00

Godzilla has diabetes and was suffering from an extremely bad low when he raided that city... Nom. Nom. Nom.

Books about Diabetes: Judging patients by their cover...

2010-04-29T12:37:00.010-04:00

So I am standing in a downtown Indigo bookstore (the largest bookstore chain in Canada) and I am at one of their computers looking up books on diabetes. A young employee approaches me to ask if I need any help finding things. He kind of stutters a bit as he realizes I'm looking up the word "DIABETES"... "Damn," I realize, "I've marked myself as diseased." He seems very happy to scurry away when I say that I am fine. Maybe I am being over sensitive or maybe it's just that I am remembering last summer when I was in another Indigo bookstore and the lady employee helping me carried on our entire conversation while staring at the infusion site on my arm.

Anyway, back to the original story, I'm typing "DIABETES" into the search engine at the computer at the store, because I am curious about something: I was reading a piece for school referencing all these memoirs written by people with diabetes, but I've never actually seen such a thing in book form. Sure enough, the computer turns up an available book:Zippora Karz's The Sugarless Plum is an autobiographical account of her being diagnosed with diabetes at the age of 21, while a professional ballerina with the New York City Ballet. So, that's cool... but I'm not super excited about the ballet... "What else is out there?" I wondered... Well, there are several autobiographic-type books available to order online, but the books I find most interesting were no longer available.

In other words, my friends, if you are looking for the voice of people living with diabetes you are shit out of luck. BUT the good news is if you are looking for books by 'professionals' they are aplenty!

Yep, that's right: if you want to know how to cure, stop, naturally treat, medically manage, eat and exercise your diabetes there is every book imaginable... Ugh. And people wonder why people with diabetes turn to social media/blogging? Maybe it's because we need to see ourselves as something more than just numbers and medical speak.

PS- I checked my university's library and found all of one personal account out of some 189 books available on diabetes. It is Highs & Lows, by Michael Twist (who also happens to be Canadian! Woot!)

PPS- Toronto has a really awesome public library, where I found more autobiographical stories of living with diabetes readily available than my school's library and the bookstore combined.

The Lone-ly Diabetic Academic

2010-04-15T22:18:00.005-04:00

You know what else sucks about school? High blood sugars- Sitting on your ass writing and stressing out about papers all day is not good for your diabetic self. It's hard to come up with thoughtful ideas when you feel disgusting. I should start keeping count of the correction-boluses-per-paper-ratio so that when people ask how I found writing the assignment I can say: "Not too bad, this one was just a 10 correction bolus paper- one last week was a full 30!" Sadly, no one will know WTF I'm talking about :(

Diabetic Narwhal versus Diabetic Unicorn

2010-04-06T00:39:00.004-04:00

system cyborg

2010-04-04T12:01:00.007-04:00

I used to feel inspired to make things. Now I just feel bored... I think, mostly with school. I feel like I've never fit into school. I had grade school teachers make fun of me in front of the class, for working slower than everyone else. I kept telling them I had trouble with the work and they ignored me, because my "grades were to good to indicate a learning disability." But then in university they told me that I maybe should have gone to college... until they actually put me through all the rat maze test of a psycho-educational assessment and found I'm as brilliant as f*@#ing Einstein, but I have crap working memory. Meaning, it basically takes me a lot longer to get my thoughts down on paper in a manner acceptable to academia. I hate school. I would have liked to have gotten a PhD, but I think I'm done with school after this degree. It makes me feel like a cog and I'm just not into being that kind of cyborg anymore.

Diabetes Bedazzling

2010-03-25T22:45:00.004-04:00

Maybe I'll start leaving them all in, so that eventually it will make a design... Unicorn anyone?

Steroids + Diabetes = Bad Effing Idea

2010-03-21T23:10:00.004-04:00

Every spring until end of summer I have to start using steroid inhalers because of allergies. If I don't use them I can't breath. But the interaction they have with my blood sugars for the first little while is aweful. The initial side-effects are gross too...

I feel sooo uncomfortable in my own skin, I wish I could just detach myself from my body. My lungs are burning and I feel like I have sand in my eyes/am parched beyond belief. :_(

The Diabetes Triangle

2010-03-13T23:01:00.004-05:00

Yesterday was crap. It was aweful. Some people have problems with highs, I have problems with lows. Bad lows. I hadn't had any really horrible ones since starting the pump over a year ago... and then yesterday happened. It's not so much that I went really low as the fact that I was riding the edge of a low for hours, seemingly regardless of what I ate or altered. And that, to me, is worse than a full-out low, because in those numbers between I get really, really disgustingly nauseous.

I don't know exactly how it happened, but I have a theory: the diabetes triangle.

As you can see from the scientifically calculated diagram below the triangle involves three points (weightloss, overcalculated bolus, recent illness requiring basal adjustments) that combine into the perfect storm. While in this tempestuous state all traditional monitoring and diabetes navigation apparatus breakdown and you must survive based on instinct.

Said instinct usually involves gross amounts of food, coupled with temporary basal reductions. Generally, when emerging from the triangle monitoring systems and sensibility return to previously working states... usually reading high, though yesterday I somehow made it out with the relatively normal 10.0 mmol/L.

After this fiasco, today I was reminded of the horrible lows of the olden days of Lente and Regular insulin... Unfortunately, that also provoked the 'terrified to eat because I'll have to bolus' feelings of said yesteryears.

I changed my mind...

2010-03-11T21:32:00.007-05:00

So, I was going to write this blog post about how I've been sick since the start of last September. I was going to talk about the crippling fatigue and joint pain. I was going to describe how depressing it was trying to get to class on time in the morning, but failing miserably because my hands moved more like lobster claws than extremities with digits capable of fine motor skills. I was going to tell you how I've had a thousand blood tests, x-rays and ultrasounds done and all have come back fine. That my family doctor has written me off as 'merely depressed' (ironic considering the amount of anti-depressants running through my system) and given up trying to diagnose anything. I was going to tell you that as a last resort I've turned to my endocrinologist for answers and that today she gave my more results with no answers.

I would have said that every time I have a battery of tests and wait for the results it feels like looking forward to finding out I'm diabetic all over again... and that, without fail, every single time I've gotten butterflies in my stomach, a lump in my throat and may even resort to crying. "I've already gone through this," I think "why do I have to do it again?"

But then, I came home and there waiting was a post by a Twitter friend @rpederse. It said:

As Twitter friend Virtue B. suggested in tweeted comments on my post, focus on the daily stuff makes recovery from a mistake much easier.

And, as I read the post, I thought maybe I should take heed my own words and forget the big picture for a bit. I've been doing much better lately; mostly what is hurting now is the idea that my symptoms will all come barrelling back... But worrying about what might be can be debilitating in its own right. This is a lesson I remember learning through diabetes and all its potential complications-- I guess I just needed the reminder that it is easily required by many of life's other quandaries.

i am a 'model patient'?

2010-02-18T14:36:00.007-05:00

One of the nurses said this to another practioner in my appointment today. She liked the steady stream of 5.7 mmol/L blood sugars on my printed reports. I didn't think much of it until I walked down the hall of medical offices and passed a room where an older woman was sitting alone with her head in her hands. 'You look how I feel when my blood sugars are high,' I thought- tired, frustrated. I could be wrong, but her body language read that she did not get the same smile, nod and 'model patient' badge that I got. So, then, I wondered what monicker she got to bear: A difficult patient? A non-compliant patient? A bad patient? Honestly, I like the positive feedback, but at the same time I kind of feel badly about my little 'model patient' label. Though it seems nice on the surface, the alternatives that it offers are really rather nasty ways of perceiving people. And, while, perhaps practitioners don't come out and say these alternatives to service-users, I've worked in settings where I've seen the attitudes of those alternatives pervail in conversations despite being unnamed. And, I know from being the patient, instead of just being tired and frustrated, you get to add 'judged' to the list.

Somewhat ironically I left the building and wandered into a near Darwin Award moment when I found myself in the middle of a seemingly endless row of suburban houses, diving into a massive low with enough insulin on board for an entire meal and only a yogurt drink in hand...

Win some, lose some I guess.

Elephants

2010-02-14T23:10:00.005-05:00

let it slide,
let your troubles fall behind you
let it shine
until you feel it all around you
and i don't mind
if it's me you need to turn to we'll get by,
it's the heart that really matters in the end

~ Rob Thomas

Three years ago February 14th was two days before my grandpa died. I knew it was coming. By that point he couldn't eat solid food... actually, he could barely eat any food. I made him an origami elephant as a Valentine. It took me forever. By the time I was done I had folded and unfolded the paper in so many ways, the paper was worn at the edges. I moved in with grandparents on my dad's side when I was seven years old. I grew up with my grandpa. In a lot of ways he was like my dad. I watched tv with him everyday- The Fugitive, The Rockford Files, The Avengers... He watched me grow up. He said, "An elephant never forgets." So, I gave him an elephant so he would know I would never forget the various bumps and folds of the past throughout the various bumps and folds of the future.

Kindnessgirl.com wrote the other day:

"Here’s the deal:
Grab a pad of post-its or other pretty paper.
Leave your message (it can be anything) of love for someone to find.
Then trust it is found at exactly the right moment by the perfect person."

Obligingly, I grabbed my Post-It notes and Sharpie marker and headed out into the cold late afternoon of this Valentine's Day. I wrote down messages of 'you are loveable' and placed them on benches and bus stops, subway entrances and mailboxes, little-tyke bikes and phone booths. I thought about all the people I know going through a rough time this season. I thought about the various times I had been made to feel totally unloveable growing up. And then I thought about the time that I went over to my parents house to keep my grandpa company as he was sick. I fell asleep beside him and when I woke up I caught him watching me as I slept. I remember thinking 'this is your gift to me'- to make me realize I am wanted and needed and absolutely loveable. I merely passed on the sentiment today and I hope that someone else who needs it now does find it at exactly the right moment.

Ps- I should mention that I was introduced to this fabulous idea by my twitter friend @chronicbabe, who can also be found at ChronicBabe.com.

Snowageddo... Oh, wait...

2010-02-11T12:33:00.005-05:00

There is no snow here this season. Just cold- so I only have Coldageddon advice: keep your pump tucked inside your jacket so it can be nice and warm... (at least if it's Animas.) Mine decides to lose its prime when going from the cold outside to the warm inside. Apparently it is a common enough problem that customer support knows about it... The obvious annoyance is that if you don't realize it's lost its prime then you don't get insulin and your blood sugars have a field day. Yes: field. day. I've started the practice of checking my pump when I get in from the outdoors, just in case. I love my pump/kin, but it's one annoyance I could do without.

If you do live with snow, you should read about Diabetesaliciousness experiences of this year's Snowmageddon.

Ode to fallen Insulin Pump Tubing

2010-02-01T01:29:00.004-05:00

Kitten thought my insulin pump tubing was yarn.
Kitten played with tubing.
Kitten gnawed on tubing.

Beware of kittens.

Lions and Tigers and Bears?

2010-01-16T16:47:00.014-05:00

If every story has a backstory, this is mine...

Grade 5
One of my schoolmates talked to the class about her sister's diabetes and the day-to-day routine since her diagnosis. She went through the symptoms: thirst, frequent urination, dry skin, fatigue, weightloss... I remember thinking "I have all of those... except one- weightloss." And with that, the posibility fled from my mind.

Grade 8
Preparing and presenting a speech was required every year of middle school. For some reason I chose to speak about the discovery of insulin.

Grade 10
Fall: Thisty. Really, really thirsty. Going to the bathroom a lot. Skin parched...

I thought I had a urinary tract infection and booked an appointment... Losing one pound, two pounds, five in a week...

It was a new doctor. She did a full physical. I remember handing a urine sample to the secretary at the front desk. She said, "We'll call you if anything is wrong, but I'm sure it will all be good." "I am sure it won't be," I thought as I left the office.

Winter break: Falling asleep while sitting watching TV at 6:30pm... The only thing I remember asking for Christmas was a belt, so my pants would stop feeling like they were falling off...

The new year: The doctor's office did call and asked my dad to take me to the lab for a few blood tests. Nobody told me why. Nobody needed to tell me why. I knew what it meant when they were testing first thing in the morning and then two hours after eating...

January 15th, 1994: I was eating dinner with my dad, my grandparents and my sister. I remember roast beef. The doctor phoned and told my dad that I needed to come back to the office. They wouldn't tell him why. He pressured them for answers. They still wouldn't tell him why. He started yelling. They told him nothing.

My stomach turned. I stared at the dinner on my plate, before finally just leaving the table.

At some point my dad phoned my previous physician. He asked them to obtain the test results...

January 16th, 1994: I went to school, but was pulled out of class and summoned to the office. My dad picked me up. The only thing I remember about this was sitting in the car driving to the hospital and thinking, "I promise to be a better person, if this just ends up going away."

January 17th, 1994: Holly- middle-aged, brown-hair, lots of make-up and strong perfume- the diabetes nurse/educator woke me up at 6 am. She and several others stood around as they asked me to step onto a scale.

NOT. A. MORNING-PERSON.

Being half asleep, I fell off several times before attempting to steady myself by spreading my arms out like airplane wings. It was a ridiculous scene; even half asleep I realized this and started laughing. I recall the event as highly entertaining for me; really uncomfortable for eveyone else.

The next seven days: I stayed in the hospital until the 24th.

Things to remember:

Read The Catcher in the Rye.
My mom sent me flowers. Part of the arrangement was gladiolas.
My friends came to visit me, which was nice. One of them saw the bouquet and said, "Oh, I thought gladiolas were for funerals..." which was not nice.
I made a weird looking basket.
I learned to hate the smell of Bacti-Stat soap.
Lots people in my family came to visit; my dad stopped by every night. This was the best part of my stay.
The daytime when no-one was there was boring. I remember staring out the window. The curtains were ugly. I think they were orange.
I made friends with one of the student nurses. She'd hide out in my room and we'd chat. It was from her I learned my sideshow status- I was the first type 1 diabetic any of the nursing staff had ever met in the flesh.
Every hospital professional I met was eager to mention the promise of a cure in no more than 5 years.
Had a heparin lock shoved into my arm without any warning. The nurse just grabbed my arm and, without any explaination, pushed the apparatus underneath the skin of my forearm. It was rather horrific.
I got a day pass one day. I went to the mall with my dad. I bought some shirts. The sales lady kept staring at the heparin lock in my arm. I remember my dad saying that he couldn't help but think of me as a porcelain doll now.
The staff made my dad and my sister learn how to give me injections. The idea behind this was that in the event that I was sick and unable to give myself the shot, either of them could step in. This always confused me, because I always figured that if I was so sick as to be incapacitated what I'd really like was to be spared being jabbed and taken to the hospital. When I think back to it, though, I find it especially unfair to my sister- she is terrified of needles and was was practically in tears when it was her turn to poke me. That's when I decided I really didn't like Holly and her perfume.
Discovered insulin smells like Elastoplast band-aids.
Annoying nurse on the night shift routinely woke me in the middle of the night to quiz me about the symptoms of hypoglycemia... I still wish I could show up at her bedside at 4 am to wake her up to quiz her about the symptoms of diabetes.
Asked my endocrinologist if my life expectancy would be affected. She told me, without any hesitation, that diabetics generally live 1/3 less than the average population. It felt like a sucker punch... especially at 15.

Getting sprung: a day or two after leaving the hospital I went to see a movie with friends. It was Philadelphia, which in retrospect was not the best choice. Toward the end of the film, when Tom Hanks' character dies there is a scene of his wake. Playing on the television is a home movie from his childhood. I remember crying and not being able to stop. I couldn't explain why I was crying at the time. But, now I think I know why... and funny enough, that's actually the only time in my entire life that I cried about my diabetes.

Meeting in absentia...

2010-01-07T16:08:00.032-05:00

I have really wanted to write this and not at the same time. It's not that I don't want it said, but more that I am not sure I have the exact words… I kind of think that there exists something in-between spaces. Like, when you enter an old house and touch a window frame: how many people before you stood and made contact with that point before you? It's like past, present and future all come together in that space. It exists, but doesn't. It's just kind of in-between. History? Memory? Connection, maybe? I don't really know that you can confine it to a word… or perhaps it is a different word for different people in different points of time.

People generally associate the discovery of insulin with the city of Toronto, but no event exists in isolation and there is a backstory to this story. Prior to moving to Toronto to begin his research into diabetes, Frederick Banting lived for a short while in the city of London, Ontario. After kind of a miserable start in private practice Banting also began to teach medicine at the University of Western Ontario. He had no relation to diabetes, but one day a colleague asked him to fill in and give a lecture regarding the pancreas. One evening he lay in bed reading material to prepare for the talk. At 2 am he woke up and wrote down an idea that came to him regarding a possible treatment for diabetes… and that is how his trek to Toronto and the eventual discovery of insulin treatment began. The house where this small moment took place still exist in London. It is now a museum. Most of the house covers various aspects of the site's history, but the bedroom where Banting dreamt his original hypothesis has been preserved.

I visited the space with a friend on Wednesday. As we entered the bedroom the curator told us of the various other visitors to the room. There are, essentially, three groups of people that come to the museum:

(1) the average cultural tourist, with no ties to the issue
(2) researchers:

The rational bunch generally decried any sense of mysticism about the room. But eventually there came a point where they would lean on the bed to comment on the wall paper or some other detail of the room. "It's not the mattress," the curator would mention "it's the bed frame that's original" and invariably the researcher(s) would inch back to grasp the bed frame.
Of course, there are exceptions to every rule: one gentleman from South America who had been doing diabetes research for over twenty years would was positively giddy as he sat on the bed. He managed to convince the curator that if he was just allowed to have a quick nap in the bed perhaps it would provide the inspiration he needed to cure the condition. The curator noted that if that was all that he needed to come up with a cure, he would sure oblige- and, so, he dimmed the lights and let the researcher have a quick rest in the room.

(3) People who have a direct association with diabetes:

A family with a 9-year-old girl who had been diagnosed with diabetes some five years earlier. Though the rest of the family entered to bedroom, she would not enter the room. She merely stood by the door, never crossing the threshold.
A woman whose father had been among the first to receive treatment in Europe; this allowed her to be born 15 years later.
A young mother whose baby had been recently diagnosed with diabetes. She came into the room, sat on the bed and began sobbing. The curator let her be, but after ten minutes, he could still hear her crying from down the hall. He grabbed a box of Kleenex from his office and went to the room. When he entered and offered a tissue the mother stood up and stopped crying. "No. I don't need that. I will not cry anymore now. I know that my child will be okay." At which, the curator took the Kleenex for himself as he started sobbing.

To the side of the bedroom sat a small shelf with a short write-up and dozens of written cue-cards. Apparently, when the museum opened there were cards placed so that people could leave suggestions and comments regarding the exhibits. Rather, people began to leave notes to Frederick Banting. So, the museum decided instead to leave the cue-cards out for people to inscribe a public message to the late doctor. There were several different languages present. A lot of them looked like children's writing. Most of them were simply put: "Dear Dr. Banting, Thank you."

I sat on the bed. I held onto the railing and in that moment I felt like I was holding the hand of every other person that had entered and held onto that space... including the person that came up with the idea for the research that would eventually save my life just over 70 years later. I can't describe what that felt like and I rather suspect that every person that has sat in that same spot has experienced a different connection to that space. I can tell you this though: when I left that site I no longer hated my body and its misfunction. I will never again feel angry for the regimen that follows being diabetic. Somehow, at that moment I made peace with my body and its broken pancreas, because what I realized in being momentarily transported back to a time when there was no treatment for diabetes is that it was once a inescapable death sentence: that disgusting lethargy and thirst that I felt prior to being diagnosed and medicated is generally how people stayed until they eventually died of a slow starvation over six months to a year tops.

January 16th, 1994 is when I was diagnosed and when that anniversary surfaces next Saturday I won't think of it as 16 years with diabetes, but 16 years of life I wouldn't have had if it weren't for insulin... And for that my note read: "Dear Dr. Banting: Have had diabetes for 15 years; thank you for saving my life."

Butterfly Needles + Snow.

2009-12-02T23:50:00.007-05:00

I spent the other night in the hospital. I spiked a very nasty fever and no matter how much insulin I pumped into my system I couldn't get my blood sugars below 10 mmol/L. The only time this ever happens is when I have some sort of infection in my lungs. They'd been burning when I breath, but I didn't have the cough that usually goes along with an infection. I hate ER's. I hate the waiting. I hate the emotionally sterile environment. I hate the bad television in the waiting rooms. I hate the sitting for hours feeling like shit.

The nurse used a butterfly needle to draw the blood from my arm. I'd never had one used before. It was fine, until she took it out and my arm wouldn't stop bleeding. "Just press on it," she said. I was and it was bleeding through my fingers and down my arm. "Press on it and lift it up in the air," she modified. I did and it... eventually stopped.

They didn't figure where the fever came from and didn't have much to say about my uncooperative blood sugars. I left the hospital around 4:30 am. The streetcar down College was slow in coming and I couldn't find a cab. It was cold out; when I had left the house early I was so warm I didn't bother to wear a sweater or a winter coat. I couldn't stand waiting for the streetcar and eventually started walking in the direction of my house. I pased by the 7/11 and there was a young guy working behind the counter- I guess this hour is normal for him.

It started to snow and I thought of the time when I was working as a nanny and one of the kids caught her first glimps of snow. She was so excited. "If it's snowing in the backyard, I wonder if it is snowing in the frontyard too," I said. We ran to the front to see. Sure enough it was and before I could turn around to go back to the kitcen she had her rainboots on and was sloshing around in the backyard. It was like magic. I missed that moment. I miss feeling well to the point that I could just carelessly hang out with friends and enjoy the snow.

Excuse me, but your ego is in the way of my good health...

2009-11-29T23:32:00.013-05:00

So, I took a bit of time off from school work to go to a diabetes event at one of the hospitals here in Toronto. For the most part, it was fantabulous. I love being in a room full of people that also beep on a regular basis and all the food served had nutritional breakdowns attached (was like diabeetus heaven). But, there's always that one speaker...

The piece was about type 1 diabetes and physician-patient relationships. It started off really good- talking about real-life comments from diabetes patients about their frustrations with healthcare providers. I thought, perhaps naively, that the speaker was heading into a conversation about some of the misconceptions held by many healthcare providers around issues of diabetes... No. Instead the ENTIRE discussion focused on findings of the DAWN Study around the psychosocial issues people with diabetes face. It was like he was talking to a room full of 'healthy' people... like all of us diabetic people were invisible in the room.

So, when the talk finished I dutifully put my hand up in the air to challenge what he was saying... "I've had diabetes for almost 16 years. I've never had an A1C above a 7. But I still get doctors that treat me like I'm clueless and I've had physicians that have called me a liar to my face," I said "Considering, then, why did you choose to leave out healthcare professionals in your analysis?"

The speaker kind of bumbled for a minute, but finally admitted to two things:
1. The traditional teachings around medical practice preached lecturing patients about all of the frightening possible complications of diabetes as a model of gaining patient compliance;
2. Umm... actually changing bad physician behaviours is probably even harder than changing negative patient behaviours.

I felt kind of sheepish about my question on several counts. First, I don't like talking about my diabetes control. I worry sometimes that people think I am doing something magical to keep my blood sugars in check, when the truth of it is that I sometimes I've just been really lucky in controlling the condition. But, then, I felt even more awkward after all the presentations when people I'd never met came up to me to comment that they too were feeling frustrated by the speakers talk.

As I left the conference I tried to hold on to the general feelings of contentment around the presentations and the positive people of the day, but I couldn't rid myself of the nagging sense of anger rheuminating in the back of my mind at the fact that a lone physician managed to silence an entire auditorium full of diabetes patients. Not nice, doc, not nice at all.

Happy Bloodwork Day!

2009-10-13T23:35:00.009-04:00

Today was bloodwork day!

And it was my most favourite kind of bloodwork- fasting... because you know for sure the first thing I want to do in my morning is sit in a room full of people waiting to bloodlet and/or pee into uncomfortably small cups.

Usually, when I get bloodwork done my arm keeps bleeding after the needle is pulled out. One time, I left the house wearing a completely white shirt, but when I came back from the lab and took removed my coat I found my white shirt had one new fully red sleeve.

Not this time! Because this time my arm stopped bleeding in the middle of filling up the test-tubes. Apparently, it can't just go smoothly- it's got to be one extreme or the other.

My Machine Kinship

2009-10-02T00:02:00.007-04:00

Awww... I just found my kin at Nerdbots- a site devoted to handmade bots out of found objects.

Dear Insulin Pump...

2009-09-19T17:09:00.005-04:00

Dear Insulin Pump,

I have a question for you...

Were you designed by a man? I cannot seem to figure out how to wear you while wearing a dress. I know they have all sorts of accessories for attaching you to my leg or around my waist, but these are usually for: (a) longer dresses; (b) not for fitted dresses. So, I am either forced to not wear the clothing I want or to wear you around the neckline of my garmet... the latter makes for rather repetitive and predictable small talk ("what's that thing?" "it's my insulin pump." etc and ad nauseam)

Nevertheless, thanks for accepting the position of honourary part of my body. You do still make my life better, even though I curse at you rather frequently...

Luv,
Virtue.

Embarrassing Outings

2009-08-03T22:30:00.014-04:00

While riding the subway, I got the tubing of my insulin pump wrapped around a lady's purse. I have no idea how it got caught up in the handle, but I did carefully and successfully detangled it as she focused on reading her book... eek.

I know this sounds like lunacy, but…

2009-07-13T02:12:00.014-04:00

I kind of unwittingly fell in love with Duncan Jones’ film Moon. The movie is a snapshot of character Sam Bell’s life as the sole inhabitant of the Earth’s moon. There, Sam spends his days mining a clean-burning energy (Helium-3) for consumption back on the Earth. His only companion as he lives and works is an AI computer reminiscent of 2001’s Hal-9000, called GERTY… that is until, one day, Sam finds a mysterious figure on the perimeter station, who appears to be an exact replica of himself.

I exited the theatre I knew that I enjoyed the movie, but it took me a while to realize why I was so completely charmed: Some hours later, as I lay in bed reviewing the movie in my mind, I slowly understood the films storyline as a twisted mirror of my current state of life. I am a diabetic. I wear an insulin pump. I have met others with the same device, but they are not a regular part of my life… Living with a machine attached to you for 24 hours a day seven days a week is a bizarre state of being and it sometimes gets to feeling as lonely as living on the moon. I can communicate this to others who lack this attachment, but it is never the same as occupying that lonely sphere. Like Sam Bell, I do have conversations with myself about life on veritable lunar landscape and, like Sam Bell, my only other companion is a mechanized helper. Although, of course, my helper lacks the self-consciousness of GERTY…

Or, does it? As I lay reviewing the movie in my mind I had a very strange epiphany- I seem to have developed this unconscious belief that my insulin pump just might be a sentient being. I know consciously that it does not calculate and calibrate my blood sugars without my input, but I do have this worry that it has wants and needs of its own that are unmet either because of my ignorance of machine-life or, perhaps, because of some unimaginable language barrier. And then I realized that I feel guilty about all the times I’ve yelled at it to shut the f@*! up when it would belligerently beep at me to remind me of the need to test my blood sugars and/or replace its insulin cartridge. After all, it was only trying to help… just like GERTY.

Perhaps, at this point, you are wondering if I have lost my mind. But, in truth, I think that people need stories- whether in film, books or subconscious attachments to (in)animate objects. These narratives sometimes instill less than equitable ideologies, but sometimes they can also help people make some sense out of what can be the frightening and senseless make-up of life. So, let me explain- I saw this film little film called Moon and I fell in love with it, because it somehow made me like my cyborg self a little more than I did before…

Life in Imitation...

2009-07-08T17:48:00.027-04:00

"Life imitates art, more often than art imitates life. ~Oscar Wilde

There are cyborgs living amongst us, but it is a reality few people recognize. Of course, there is the broad suggestion that the modern reliance on new information and communications technologies now constitutes a new transhuman era, but this is not what I am talking about. What I am referring to are the many people alive today surviving with cybernetic devices attached or implanted in their bodies. We are the true cyborgs of the day.

The term cyborg is a combination of the terms cybernetic + organism and originates in the work of Manfred E. Clynes and Nathan S. Kline in their article Cyborgs and Space (1960). Though their definition of cyborg is restricted to instruments embedded in human functioning that work autonomously, Craig M. Klugman suggests a slightly more complex definition of cyborg based on current science and modern science fiction literature. He divides the term into two categories: the replacement body and the enhancement body. These forms are further divided into non-Cartesian and Cartesian forms, creating four final categories as follows:

Of all of these forms, the transplantable body is the only category made reality via modern medical science. The category represents people with mechanical devices used to repair broken or missing human body parts- artificial limbs, pacemakers, etc. However, most current pop culture texts deal with the idea of the cyborg in all other forms, most specifically as an enhanced super body. When I say cyborg you probably think Terminator or Robocop, not a chick with a mechanical insulin pump for a pancreas. But the more I watch and read popular science fiction the more I feel in line with those those mythical super strength forms of cyborg- as a real-life cyborg I too am marginalize and/or a feared monstrosity. That is how disability is coded in an able-bodied world.

Unfortunately, such an awkward mix of medical marvel and human difference is rarely discussed in terms relevant to those of us occupying the boundaries of organism and machine. It took me a while to realize that this is because most authors writing about such states do not actually occupy them. They are tourist, in a way, fascinated by technology without realizing the human consequence. So, here I am, writing to you to remind you that there are consequences.

Cyborg beginnings... or how I learned to stop worrying and got the bestest present ever of my life...

2009-07-06T23:34:00.010-04:00

I am not sure how many people realize, but insulin pumps cost about $7000 CDN and another $250-$300 per month in supplies. Even with private insurance, patients still usually pay 20%-40% of the pumps cost.

After going back to university and buying into the school's private health insurance plan I realized it might be the best opportunity to purchase an insulin pump. It would still cost me about $2500 CDN, but that was more manageable than the full price. Lucky for me though, just before the purchase, there came this...

Ministry of Health and Long-Term Care Ontario Launches Diabetes Strategy

$741 Million Plan Will Make Patients Partners In Care

TORONTO, July 22 /CNW/ -

NEWS

Ontario is investing $741 million in new funding on a comprehensive diabetes strategy over four years to prevent, manage and treat diabetes.

The strategy includes an online registry that will enable better self-care by giving patients access to information and educational tools that empower them to manage their disease. The registry will also give health care providers the ability to easily check patient records, access diagnostic information and send patient alerts. The registry is set to come online starting Spring 2009.

Other key elements of the strategy include:

Improving access to insulin pumps and supplies for more than 1300 adults with type 1 diabetes by funding these services for people over the age of 18.
Expanding chronic kidney disease services, including greater access to dialysis services.
Implementing a strategy to expand access to bariatric surgery.
Educational campaigns to prevent diabetes by raising awareness of diabetes risk factors in high risk populations, such as the Aboriginal and South Asian communities.
Increasing access to team-based care closer to home by mapping the prevalence of diabetes across the province and the location of current diabetes programs in order to align services and address service gaps.

Ontario's diabetes strategy will help tackle a growing - and expensive - health care challenge. The number of Ontarians with diabetes has increased by 69 per cent over the last 10 years - and is projected to grow from 900,000 to 1.2 million by 2010. Treatment for diabetes and related conditions such as heart disease, stroke, and kidney disease currently cost Ontario over $5 billion each year.

The strategy will support Ontario's two top health-care priorities of improving access to care and reducing emergency wait times.

My pump was fully covered by the government and every three months I receive a cheque to cover the cost of supplies. Two words: thank you.

F.A.Q.

2009-07-05T15:26:00.005-04:00

Is that your cell phone?
- no, it's my insulin pump.

Is that your mp3 player?
- no, it's my insulin pump.

Is that your pager?
-wtf? pagers haven't been this bulky since 1995...

*sigh* no, it's my insulin pump.

Is that a data port?
-no, it's my... wait, I actually kind of like that idea... yes! it's my data port! but instead of 1's and 0's it works with the binary insulin/no insulin.