Before and After.

Ok, so this is what I meant to post about when I wrote the last one.

So maybe it sucks that this kid's body is getting displayed everywhere, but here's a before and after picture, courtesy of the awesome "Broken & Fabulous" zine. It's a type 1 diabetic kid in the 1920's, before and after insulin was discovered (and she was one of the lucky ones to get access to it in time). I'm sure some of you fellow diabetics have seen it before:
The above is just one of many reasons I don't respond well to pictures like this:
or this:

or people telling me how I look great after I've lost some weight (which this time, is largely due to high blood sugars, since I have definitely been exercising less and eating either similarly or more food and less healthy foods). So it is definitely not from being "healthier" this time, it's from being less healthy.

I have several issues with the prevalent "weight loss is always positive" idea, but this is just a part of why it's more complicated (medically/physically and emotionally/psychologically), and what it means to disappear or not disappear part of your body, what starvation means, etc. to me.

407 at 3:29

So despite promising myself earlier today (and yesterday, and last week) that I need to get on a better schedule, I'm up posting this at 3:29 am. Last night I actually had a dream which involved getting to work late, people stealing my desk (which actually does happen a lot, but this was more severe), and then realizing I was in some pretty awkward pajamas and not work clothes. And then I woke up, waaay after my alarm had started going off.

I actually did turn off my computer earlier (before 1) tonight in an effort to get to bed at a semi-reasonable hour, but I turned it back on because I was really frustrated with blood sugar issues, so I wanted to settle down (and break me off a little piece of that diabetes OC to help) before I try to go to sleep. Basically: after working out tonight, I'm 97. I don't eat anything, I go grocery shopping (which usually drops me), and 3 hours later, I'm 397. Wash hands, repeat: 382. Yup. My site doesn't hurt, no visible blood or loose tape, and isn't due to be changed until tomorrow afternoon (I try to change it every 2 1/2 days or less). When I took it out, there was blood in the cannula - but I had no way of knowing the site was bad until my blood sugars went nuts (and for a second, I felt guilty for not having tested for 3 hours, and then I realized that is ridiculous). I gave myself a shot, fairly aggressive but not super aggressive because it's near bedtime, and 2 hours later I haven't budged - I'm 407. Don't want to give myself a lot more insulin since it's still bedtime and sometimes my body reacts really late to insulin and I bottom out, but probably I need more before I go to sleep.

I know sites fail occasionally, but I just am frustrated and worried cuz it's happening all the time, again (this happened to me last winter/spring, I took a pumping break and tried some new sites). It seems like my pump isn't dependable anymore again. Or I don't even know. I have been in the 300s routinely in the last few weeks, despite not being sick, testing 12+ times a day, and not drinking much at holiday festivities. I started paying less attention because I was exhausted/burned out from paying so much attention and having things still not work out. Sometimes I am eating crappy or underbolusing or needing an adjustment in my insulin rates because I've been exercising less, but I don't even know how to sort out what's what, changes I need to make or bad sites any more. Between not trusting my pump and being burned out, I sometimes can't figure it out or just don't have the energy to. You know it's bad when you're going through ketone strips like crazy just to try to figure out if your pump is working... (hey, at least walgreens started making the generic ones now!)

Newsflash!

Did you know that breastfeeding could abolish all diabetes? No, you didn't? That's because it can't!!

Last week, a nurse (possibly a nurse practitioner) said at a health care activism meeting, well, if everyone breastfed, there would be no diabetes.

Um... I say, I am diabetic and I was definitely breastfed for a long time.

Instead of owning up to the stupidity and insensitivity of her comment, or at least backing off a little, this woman says, "Really?!! Wow, you must be the outlier, the one exception! It's an inflammatory process!"

Hell no. This woman did not only just talk about me and my mother, but then she tried to defend her statement and act all surprised.

I thought about not even telling my mom (a nurse practitioner) about it because even though we both know it's bullshit, I don't want her to even think for a second about blaming herself or that I might blame her. But, I decided to, and she articulated another thing about it that bothered me. She said, "Doesn't sound like politics to me, sounds like blaming the victim." Yes, the blaming the victim thing. Stupid and fucked up. But I think it was politics, or "blaming the victim" masquerading as a political statement/rebellion, which bothers me even more. And blaming mothers is a recurring theme in our culture.
EDIT: As I was writing this post, I found this great discussion going over on Scott's blog about diabetes, breastfeeding, and blame/guilt.

I am actually all about breastfeeding for mothers that are able to, but this comment was just ridiculous for a couple reasons. Even though I do think traditional medicine can be harmful sometimes and natural methods have a lot to offer, the "natural medicine" pusher people piss me off a lot because they take it to an extreme that is able-ist and/or just dumb. Also, not all mothers are able to breastfeed for various health and other reasons.

In general, people that think they have a cure-all "natural" solution for my diabetes, or whatever else, are pretty arrogant to think that they have the fix to something that I devote endless time and energy to on a daily basis. If it was that simple and complete a solution, don't you think I would have found it? Or am I just stupid for muddling through with my traditional medicine? Do you want to see what happens to my body for even 4 hours without any insulin?

Now, that nurse wasn't suggesting she had a cure for me now. This is just an example of where that kind of statment takes you. It's a way of invalidating my very real experience. That's the problem with universalizing especially when you havent had that experience (and especially when you're working out of this ableist framework).

Also, even if it really was true that breastfeeding can prevent all diabetes, that's a pretty serious, loaded thing to say in such a cavalier way to someone you met 15 minutes ago.

I need to learn to write shorter posts. If you're getting bored, you can consider yourself done here! More ramblings of mine follow...


There are studies that show breastfeeding does significantly reduce the chances of a kid developing type 1 diabetes. And inadequate nutrition as a fetus, infant, or child can be linked to higher risks for stuff like type 2 diabetes and other health issues as an adult (one reason why I think we need to look at environmental stresses like poverty, etc. before anyone chalks up racial health disparities to genetics, which can often end up being just a new sophisticated incarnation of scientific racism). But for her to talk about this one single cause is really inaccurate. And her justification that it's an "inflammatory process" doesn't help her case, because there are so many different triggers that contribute to inflammation.

Also - speaking of ableism - this nurse also made a bunch of comments about well, if something ever happens to me, that's it. pull the plug. She was trying to make a point about the excess money we spend in the U.S. on heroic measures like ventilators at the end of life. I actually agreed with some of what she was saying, that we need to reexamine what life is and how we're spending our healthcare dollars, and if we really want, from a financial and quality of life standpoint, to be living hooked up to tons of stuff instead of letting ourselves die peacefully when life is ending. But I don't think needing outside assistance from other people, machines, or drugs are the definition of when life is worth living or not, and her statements went too far into ableism and almost even eugenics.

Do you really think life with illness isn't worth living? And do you want to say that to me and the woman sitting next to me that looks like she might have cancer? Besides being a messed up way of thinking, MOST people live with illness or disability in some form at some point (especially people that are not upper-class white people like she and I). And I think to not recognize that is both inaccurate and ableist in that it reinforces this idea that healthy and perfect (and requiring no outside help from other people/medicines/therapies/etc) is the "normal" state for everyone, and a fall from that is remarkable or abnormal.

Theory and Practice: Ketones

I couldn't help but be hit on the head with the irony of checking for ketones* while I crammed for my chemistry test on guess what? Ketones (and other carbonyl compounds). My professor likes to emphasize that we should not just memorize the material but understand it and know how to apply it. Unfortunately, he was talking about applying it in the form of writing reactions down on paper, and my excellent ability to pee on a strip and correctly read and interpret that data didn't earn me any extra points today. And I sure could've used them.

Since there were only a couple of us taking the exam in the office, I was totally tempted to make some joke or mention to the professor about the ketones. Some way to get a little validation for being funny/smart/special from the (hot) professor as I failed his exam. But I couldn't figure out how to do it without mentioning my urine, and well, that just seemed to defeat the purpose. Not so attractive, baddecisionmaker, not so attractive.

I took the exam in the professor's office before class because that was my accommodation through the disability resource center (since I might need to leave to pee, or need extra time in case of a low or high). It was the first time I've officially registered my diabetes; at the college I graduated from it was more relaxed; classes were smaller, and I relied on just talking to professors. I have had more problems lately, and also have started thinking about my diabetes and ability/disability a little differently in the last 5 years since I started college. I got more time than I would've even though my blood sugar wasn't too crazy, but this accommodation was actually not great for me because I took it at 10am instead of noon, and I do not function well in the morning (and could've really used the extra 2 hours to study). Also, the professor was having office hours at the same time so it was not quiet. Maybe he hadn't thought about this because the other kid getting accommodations there with me was deaf. I was jealous.

Anyways, I am a nerd and was curious about the ketone strips I pee on. Last week I was actually procrastinating by reading the ketostix box and trying to figure out how the reaction worked (no success) instead of studying the actual material. Yeah, that's how ridiculously distractable and unfocused I am - procrastinating by reading the box of my diabetes supplies, haha. That's why I had to cram for this exam.

I was checking for ketones because I'm still having weird blood sugar/insulin absorbtion issues, and I was having some unexpected highs and wanted to make sure my pump was working enough that I wouldn't be sick or wake up high and groggy the morning of my exam.


*non-pancreatically challenged folks' glossary: I and other type 1 diabetics might check our pee for ketones when we have unexplainable or multiple high blood sugars, think we might not be getting enough insulin, or are sick. Having ketones is different than just having regular high blood sugar (in fact, you can have ketones without high blood sugar), they are a sign of things not working right in the body and can be part of a dangerous cascade/imbalance if they are at high levels. It requires different and more careful management than just regular blood sugar issues. (Nerds: they are the byproduct of the body's metabolism when it switches over from it's normal fuel of sugar to breaking down fatty acids. The acidity in your blood can get dangerous.)

The Fantasy

Wow, that really sucks, but it's gonna be OK, and you're already good at _____ and ______, so that will help a lot.

Man, I'm so sorry. I wish you didn't have it. But we are going to be there for each other so much for support.

It's ok, I know it's hard. You need to be self-sufficient, but if you've had enough for tonight and you want me to, I can just give it to you, and then you can do your own shot tomorrow.

It's The Fantasy. The fantasy that I sometimes catch myself playing through in my head, that a close friend or family member will get diagnosed with diabetes too. I think the fantasy is always about type 1 and not type 2, which is interesting for a few reasons including how I identify with type 1 (and mark that difference), and the fact that it is WAY less likely (especially since most of the people close to me are adults or close to it).

I think I don't even stop and realize that I'm fantasizing, that I myself am creating this scene, until I've already manufactured a whole scenario and am running lines in my head between me and whoever my brain has chosen that time.

I don't actually want it to happen. Well, clearly part of me does, but when I weigh everything out, I definitely don't wish it would happen. I hope that it won't happen when I stop and think hard about the actual consequences.

So what is it about? I think fantasies in general are interesting. They are what the mind creates drawing from experiences and desires and all kinds of social norms and ideas and categories. And I think often they manifest themselves in a way that disavows, or tries to deny, some of the desire that is behind them. I notice sometimes that I am pondering a situation thinking about the situation or dialogue and what it means, and how I'd respond, as if it was something that actually happened or might happen. As if the people I'm thinking about had themselves done or said the things, and they could be responsible for them, when the actions or words are actually my creation. It can be really hard to figure that out and own that. Because it can be hard to even realize they are mine when the words came from the other persons' mouth in that fantasy, but also because it can be painful or make me look bad to have those thoughts actually be mine.

A class I took last year helped me think about things in this way and recognize how those fantasies work, especially pertaining to race stuff. I notice myself and other people, especially in the media, articulating racial situations and characters that are actually fantasies, creations, caricatures, reflections of our own thoughts, fears, desires, and sometimes even our own selves. It's really crazy but I think important to realize what I'm doing when I have those kinds of thoughts that are fantasies.

So back to this one... what does the diabetes fantasy mean?

Part of it I'm sure is that I want some company. I want someone to understand, to share some of my experiences. I actually have found a lot of company here online over the past year (diabetes blogs, facebook groups, tu diabetes, listserves), which does help me feel connected and supported a lot more than I ever expected from internet sources. But it's still a different fantasy about one of the people close to me, that are already in my life and share my experiences, to share this too, and maybe understand better.

On a deeper and kind of scarier, maybe uglier, level, I think I want to be able to comfort someone. Is this about comforting because that would validate me to be able to help make things better for someone else? Or because I want this kind of comfort from someone else? I don't think much about wanting or needing this intense kind of comforting from someone but maybe I do want it in some ways.

In a similar way, I want to be able to help someone by sharing my knowledge with them. I have all this intricate knowledge about blood sugar and food and insulin and exercise that is helpful to me, but somewhat random to most other non-diabetics. I want a chance for this knowledge to be useful. So that I could help someone else but also to validate myself. Interesting because I'm not sure how much I'd want this kind of "help" from someone else, but that's after years of building up knowledge. I guess I have absorbed a lot from other people over the years, although before I was part of this online community most didn't come from other diabetics. But that's also why my fantasy is about someone being newly diagnosed, and not someone else just having diabetes (remember this is created - it's a fantasy - so anything could happen, even though it's easier to imagine the newly diagnosed scenario because technically that is possible right now).

I think some of it is more superficial too. Just general speculation, playing around with the idea, since diabetes stuff is something that's so much a part of me and what I think about on a day to day basis, that I just think about and am curious about how it would play out with someone else.

I was worrying about how vulnerable I may have made myself by being so brutally honest in this post, and was encouraged to post it by what Amanda wrote over at BallastExistenz about there being no dumb questions, and reasons for writing difficult posts. Partly it's what she said, that other people may be thinking this and it may be helpful for them, or spark dialogue between us, if I post this. But others don't have to be thinking similar things to make it ok for me to post this.

It's more about the people I know that I worry than those that I don't - sometimes I wish I could have the opposite of a friends-only lock on an entry. A non-friends-only lock. I've wanted this on other things I've thought about writing. So that only people that don't actually know me could read it. So that I could say whatever I was thinking and not self-censor myself before it even comes out since I am thinking about my audience and what they might think. So that I don't have to worry about offending or hurting anyone, that I wouldn't have to worry about something seeming like a passive aggressive attack when I really just needed to say it, and wasn't directing it at anyone (whether it did or didn't actually have to do with them).

Not exactly, Dr....

Today my doctor called me back and was off in her ideas and suggestions to me, and mostly the timing of them, in a way that was kind of hilarious to me. She was just so out of context.

Basically, a few months ago, I was having problems with insulin absorption from my pump sites, resulting in high and up and down blood sugars, occasionally ketones, and therefore feeling shitty, physically and mentally/emotionally. Went on shots for a few months, which was better but made exercise, especially longer workouts, really hard to manage. Three weeks ago I started back on the pump, and overall things have been going well, but I've been having a lot of lows. These are mostly exercise related, since it's been easier to do a lot more of that with my pump back than it was for me on shots. Also, it is summer and I tuned up my bike.

But anyways, I said something about being able to exericse more, and she was like, yeah, it must be easier and you must feel much better without all that ketosis! Ha ha ha. That was um, about 16 weeks ago that my pump wasn't working and I had ketones. A lot has happened since then. If I had ketones for all that time, she definitely would've heard from me again. Slash I would be REALLY frustrated and sick and ended up on sick leave from my job or something. What I meant was because of the pump vs. shots in the last 3 weeks making it easier to exercise, not the no longer having ketones thing from bad pump sites months ago.

I don't fault her for that; it wasn't like she was being negligent to my health. And some of the things she said may be relevant if problems come back (hopefully they won't). I hadn't asked for continued help because I was doing better, and she was actually calling me back about something else, a basic logistical question about getting my next A1C (that's a routine diabetic blood test, for you folks that have internal automatic pancreases and are challenged on this lingo).

My diabetes is mine; it's a little weird to negotiate intrusions on that. Usually I think I am right to react in a way that let's people know this is my business and my body when they are intruding in a way that I find unhelpful or annoying. This doesn't mean it's off limits and noone can talk about it except me (in fact, I like it when friends or acquaintances are comfortable talking about it), just that I get to make the decisions, and be the expert. It's my body, and I have a lot of experience dealing with it, and generally know what I'm doing (or if I don't, probably you don't have the magic-bullet solution either).

With my doctor (and I mean my doctor that manages my diabetes, not all of the assorted people related to me that are doctors and bubbling with ideas about parts of my diabetes that they sometimes have no idea about), I definitely see the need for this shift, letting her in, it just is funny to figure out sometimes. Back when I was having the absorption problems, I felt like I was a little kid regressing and begging for her to hold my hand when I read her all my numbers and got help on dosing - it felt kind of wrong, even though it was probably necessary.

She has knowledge and skills that are different and help me, whether it is her training/experience or just another perspective from someone else familiar with the issues. She recognizes my expertise on my own body, because she is a good doctor and respects me*, but also because she is forced to because I just know so much more than her about what's going on. She needs my knowledge and assessments and details to even think about understanding anything or making treatment recommendations. I think this is one thing that might differentiate the relationship between type 1's and their healthcare providers (and maybe other folks with chronic issues and their providers?) and the way a lot of other people's relationships are with their healthcare providers. It is so constant and intensive and hundreds of decisions are necessary day-to-day, when the doctor isn't around, that the person with type 1 has to be recognized as an expert. Of course, I think healthcare would work a lot better for most people if providers ALWAYS recognized (and respected) the patient as the expert on their own body. And probably their are a lot of doctors that are bad at this even with type 1's, and don't do this even when it is painfully obvious that it's the case.

*hopefully this is how she treats all her patients, and this respect isn't just from me being well-read on my issues and considering nursing or medicine as a profession

EDIT: Another diabetic blogger just posted a news story that's a lil' empirical evidence for what I just wrote about, that obviously the person with diabetes is the expert over the doctor. Interestingly, this study on insulin dosing was with type 2 diabetics, who usually (not always) have less intensive medication and testing regimes than type 1's.

Diabetes blogging community and categories

I've been thinking about splitting a separate diabetes blog off of this one. I hadn't planned on posting lots of random daily stories, frustrations (aka my blood sugars are still crazy yo-yoing with exercise, and also drinking in a way that they didn't as much with the pump, and I MISS MY PUMP!!), and successes, more on thoughts or rants about issues that come up from those stories. But it's appealing after finding this huge diabetes blog community that is exciting for me to read, connect with and be a part of.

My pseudo-academic postings and non-diabetes-related rants might be boring and push away people looking for diabetes community. And non-diabetic people here for the other stuff might not be interested in the minutia of my daily issues, and won't get those thrills of connection and intimate familiarity with stupid mundane things that I know I get when reading other diabetes blogs. Maybe I would be able to build more of an interactive community, get more comments, if I split them.

But, let's face it. I can't even keep up with one blog, let alone two. And I don't really like the idea of splitting myself up into separate categories like that anyways.


Edit: I've added more links to other blogs I read sometimes, including a separate list of diabetes ones.

Drug prohibition is stupid aka GIVE ME MY SYRINGES, JERK!

Today I tried to buy 10 syringes without a prescription and was denied. I had left a box at work in a building locked over the weekend, and I needed more. I knew from working in HIV prevention/surveillance about the IL law that allows people over 18 to buy (and possess) up to 20 syringes without a prescription. Although it is limited in it's ability to increase access to clean syringes (cost, needing an ID to prove age for undocumented immigrants, trans people, young people, and poor people, and the issue of pharmacies actually complying), I think it's a great step in the right direction because it supports harm reduction and drug decriminalization.

Moralizing is stupid and an obstacle to accessing dignified healthcare and other services. The U.S. war on drugs is racist, harmful domestically and in other countries (like Colombia), and ineffective. Yes, non-prescribed injectable drugs can be harmful, but dirty needles are harmful too, and forcing someone to use them doesn't help anything! Several studies have shown that pharmacy sales of syringes without a prescription did not increase illegal drug use, and decreased high-risk behaviors for HIV. Sharing syringes is a major source of HIV and Hepatitis C infection:

• In the U.S., about 50% of all new HIV cases can be traced back to injection drug use (in people that use, their partners, or their children).
• Sharing syringes is the leading source of Hepatitis C infection.
• In Illinois, 70% of AIDS cases among women and almost all pediatric AIDS cases are associated with sharing syringes (including sharing of syringes by the mother of the child who is then exposed at birth).
  

I think that, among many other things, a fundamental disrespect of or apathy towards the lives and well-being of people affected by these issues is at the root of policies refusing to provide access to clean syringes. In addition to moralizing anti-drug sentiments, racism, classism, and sexism play into this. The Chicago Department of Public Health reports that the 2005 HIV diagnosis rate in black females was more than 15 times that of white females.

Despite citing the law and threatening to report her to the AIDS Foundation of Chicago syringe access project, the pharmacist still refused to sell me the syringes. She acknowledged that the law exists but said, "it's at the discretion of the pharmacist." Even when I appealed to the fact that I am diabetic and needed them for insulin, offering to show her my medic alert bracelet and blood test meter, she refused. I think that people that need clean syringes to prevent HIV/Hepatitis C infection when they use syringes for other purposes not sanctioned by laws and/or medicine (illegal drugs, unprescribed hormones) "deserve" them just as much, but my diabetes is seen as more deserving by many people so I tried that appeal.

It was pretty incredible to have someone look at me and say, no, I am going to deny you access to the supplies that you NEED to stay alive and healthy. And have them have the power to make that decision. I guess a lot of people face this kind of cruel denial on a routine basis, from lacking funds or other issues with our fucked up health care system.

(I did get the syringes from another pharmacy without a problem).

Thanks to the diabetes art pool for the image.