Monday, July 28, 2008

my new career as a crank

I was reading a post on CWD for parents about "who were you before D?" It's interesting. For me, it's hard to answer. Before diabetes, or before diagnosis?

The years just before diagnosis for me were a haze of chronic fatigue, repeated illnesses, slogging through college classes when I couldn't concentrate, because otherwise I'd lose my health insurance. I was lucky to have an excellent GP, a professor of medicine who took me seriously and wanted to get to the bottom of it. With every new diagnosis, a new piece of the puzzle fell into place, but still something was missing. I say this a lot, but diabetes was just the last diagnosis. Once I had that, the last big mystery was solved, and I dropped out of school because I didn't need their higher level of coverage anymore. (My GP had already left for greener pastures).

So before diagnosis, I had been barely treading water for quite awhile. I'd always had most of these things and just learned to live with them, but I started to get really sick when I started my Master's degree in 2002. I wasn't diagnosed with diabetes until 2005, when I was 27. People seem to define themselves in terms of their careers, or their aspirations. My aspirations were things like getting through the next day, or even the next hour, and my career motivation was what I jokingly referred to as, "get to work or you're fired."

I don't define myself by my career. There was a time when I really wanted to be a librarian (surprisingly while working in a library), so I went to library school. By the time I got there, though, it just didn't seem as important. I arrived at a much less accessible campus than where I did my undergrad, and discovered for the first time in my life that I'm disabled. I know, I know. It had just never occurred to me before. As they say, life got in the way, and I fell behind in my career because I wasn't up to a full time job. I spent several of the last few years unemployed, because I can't do physically demanding jobs anymore (or fake it well enough), and people are pretty puzzled by my resume since I didn't take the usual career path. I would still love to go back to school and seriously take all those classes, but I don't have the stamina.

On the other hand, I am lucky now to be in a better situation so that I can sit at my computer all day without it being excessively painful. I'm in much better health now. On the other hand, I'm not young anymore. I hear some groaning out there, but it's true. I've always loved to learn and to research. So now I spend my time researching diabetes. I got so frustrated when I was first diagnosed and couldn't find any information that made sense. I even went to the medical library and checked out all the textbooks, but they didn't make sense, either. Now, I get it. They didn't make sense because people just didn't know any better. Of course sliding scale regimens are great! Of course Lantus is scary and untested and not safe for pregnancy or small children! If you're laughing, consider that many people believe it because the long term studies haven't been done yet on these new things, so they couldn't possibly recommend them to patients. Seriously. Hands up, how many people want to go back to R and NPH? Anyone want to convince an angry toddler that they have to eat more carbs to feed the NPH?

Before diabetes, I was just someone who liked to learn, and somehow now I've become someone who likes to learn about diabetes. Someone sarcastically asked me recently, "what, do you just research diabetes all the time?" I laughed, because...I do. I've learned the hard way that the other things I used to do were too stressful, or I didn't really enjoy them, whereas now I have something to do that's interesting and important. I will stop when doctors stop telling people they have "borderline diabetes," to lose some weight and see them in three months. I will stop when people understand one kind of diabetes, maybe even two! I will stop when people know that there is still no cure for Type 1. I will stop when large organizations stop telling people they need to eat more starches to treat Type 2. So, yes, I spend all my free time learning about diabetes and annoying people on the internet. There you have it.

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