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.

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

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:

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.

i am a 'model patient'?

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.

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.

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.