Bahahahaha

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

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

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

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.

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.)

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.

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 :(

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.