Butterfly Needles + Snow.

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...

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!

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

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

Dear Insulin Pump...

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

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…

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...

"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...

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.

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.