Wednesday, December 15, 2010

5 more sleeps...

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.)

Tuesday, December 7, 2010

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

UFO's: Sites of Infusion

Monday, December 6, 2010

Diabetes Social Media Advocacy Blog Guest Post

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

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.

Wednesday, November 17, 2010

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

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...

Thursday, October 21, 2010

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

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

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.

Tuesday, October 19, 2010

This would be the abbreviated version...

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.

Wednesday, September 1, 2010

Diabetes Art Day




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

Monday, August 9, 2010

Show-and-tell...

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...


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

Wednesday, July 21, 2010

The price of licorice...

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.

Wednesday, July 14, 2010

Death of a pancreas... Again!



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!)

Monday, July 12, 2010

A hospital envelope surprise.

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.

Monday, July 5, 2010

MacGyver Moment: Portable Strip Disposal

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?!?

Sunday, July 4, 2010

Dear Feet,

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.

Friday, July 2, 2010

To Whom It May Concern:

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.




Tuesday, June 29, 2010

Questions to an X-Ray Technician...

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!)

Monday, June 21, 2010

Today is National Aboriginal Day

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

Monday, June 7, 2010

Right so...

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.)

Saturday, June 5, 2010

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

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:

Sunday, May 30, 2010

Oh, wait...

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.

Thursday, May 27, 2010

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

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.

Wednesday, May 26, 2010

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

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.

Sunday, May 23, 2010

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

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 ;-)

Thursday, May 20, 2010

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

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 ;)

Monday, May 17, 2010

I don't know what to do with this:

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

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.

Sunday, May 16, 2010

Diabetes Blog Week... THWARTED!


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.

Tuesday, May 11, 2010

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

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.

Monday, May 10, 2010

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

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:
  1. 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
  2. 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
  3. Pack my bags (I know, I should do this the night before!)
  4. Race through the kitchen and grab a breakfast pita/granola bar/fruit and juice box
  5. Walk to transit (either subway or streetcar)
  6. 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)
  7. 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!

Sunday, May 2, 2010

Little known fact...

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

Thursday, April 29, 2010

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

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.

Thursday, April 15, 2010

The Lone-ly Diabetic Academic

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 :(

Tuesday, April 6, 2010

Diabetic Narwhal versus Diabetic Unicorn




Sunday, April 4, 2010

system cyborg

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.