(Continued from last week’s entry.)
What does it mean to me that I’ve been diagnosed with a chronic illness that 80 or 90 years ago pretty much meant I’d be dead in a few years? What does it mean that, although I should be able to live a full life, I am still more than likely going to have to monitor my blood glucose and inject or infuse insulin and watch my diet and keep diligent watch over when and how much physical activity I do and wait around for the second low, and so on, and so on…for the rest of my days?
What about this question: Has getting diabetes improved my quality of life? At times I feel that it has. But I don’t know. This whole process is tough. Life, as I said, was quite good prediagnosis. It’s still good. Just as good. Or is it? This is what I want to find out, among other things.
I have a lot of questions. Maybe you’ve already figured that out. I want to know why the pain of being diagnosed with diabetes also brings with it both pleasure and understanding, fascination and frustration—and I want to know beyond the easy, trite answers such as “it makes you appreciate the time you have.” Sure. But there’s so much more to explore here.
I’m interested in exploring why I enjoy going to the endocrinologist (and I’m not a hypochondriac, nor do I have Munchausen syndrome). I like being a patient in the U-M health-care system—the rooms, the environment, the process, the excuse to leave work early. I am fascinated by diabetes supplies and the accoutrement I’ve amassed in the past three months. Going to the pharmacy to pick up supplies is an exciting trip—the pharmacists know me; they understand what it is I have. I also really like the smell of insulin, its Band-Aid essence, and find comfort in the routine of snapping a used needle into the sharps container; in changing the little computer chip in the back of my glucose monitor; in forcing just a little more blood out of my pricked finger.
I am frustrated by the assumptions of many people I speak with on the phone—medical supply companies, for example—who operate as if I have years of experience with diabetes and should know exactly what they’re talking about. Excuse me, but what do you mean that I’m three and two? What do you mean I’m five-a-day? (I asked. And, like, duh: three boxes of test strips, two boxes of lancets; five tests a day.) I’m angered that my insurance company thought I needed to be on insulin therapy for six months and then follow-up treatment for six more months before they’d even consider me for an insulin pump. I’m unable to respond articulately to people who believe that diabetes is easily manageable and that I’m lucky to have been diagnosed with diabetes and not something else. As if they know what it’s like! Because there’s so much research, they say. They’ll probably find a cure, they say. Check out this article. Did you hear about the new report. It’s treatable. It’s manageable. It could be worse.
Yes, but no.
It sucks that I have this disease. That I, me: I have a disease. I have this disease. I have diabetes. It’s a part of who I am—a major part of who I am. Anything that requires that I take its existence into consideration in almost every facet of every day cannot be anything but major.
So thanks for allowing me to look into some of the above-mentioned thoughts as the weeks and months progress. I look forward to hearing from you. I’m new to this, and your experiences and comments are welcome.
This is the third of Eric’s three-part prologue as he begins both his Diabetes Self-Management blog and his journey through life as a person with diabetes.