Monday, April 27, 2009

Diabetes = Zero Privacy

It takes a special person to be a celebrity. First of all, celebrities have to be ok with every part of their lives being public knowledge.

It does not take a special person to be diabetic. Autoimmune disorders are no respecters of persons. If you have diabetes and are willing to do what it takes to manage it, you can easily feel like a celebrity lab rat.

Believe it or not, I used to be a very private person. I didn't want anyone to know hardly anything about me. When I was first diagnosed with Type 1 diabetes I remember feeling so embarrassed as my parents rattled off relatives they told. I didn't want anyone to know. I guess I hoped it was a weird cold or something that would just go away. Or at least something I could deal with without ever having to tell anyone.

But people knew. My classmates didn't understand why I sat in the back of the room and ate a snack every day at 10 am. In many ways they were ignorant about diabetes. With the number of people affected by both types of diabetes, it's sad to realize how ignorant most people still are, including pharmacy staff. My parents arranged for a Diabetes Nurse Educator to come in and teach my class about diabetes. After that I got a lot of "I'll eat your cookie since you can't have it!" and pencils from my teacher for EVERY birthday celebration.

No surprise that when I moved to junior high I stopped telling people. My closest friends knew but only if they invited me to a slumber party. I spent the next several years telling people on an as needed basis. In college I was excited about the prospect of an insulin pump. I knew it was time I stop being the rebellious diabetic and actually start taking care of myself better. My mom had me talk to a nurse she worked with who wore a pump. I remember her telling me that diabetics who wear pumps have to be willing to answer a lot of questions. I wasn't sure if I was ready for that then. I have learned how to answer people's questions based on their interest level.

Another privacy issue with being diabetic is getting to see a doctor every 3 months. Regular people almost never see doctors. Hubby hasn't been to a doctor since my doctor scheduled him for an appointment after seeing Hubby had high blood pressure. It was kind of a funny situation. I had Hubby come with me to an appointment once. My doctor had me on the crinkly paper while he opened my pants to thump my stomach. Hubby said that really bugged him to see a male doctor so nonchalantly open my pants as if it was no big deal. Then the doctor rechecked my blood pressure. He always did it twice, once when I was sitting up and once while lying down. Out of the blue, he decided to check Hubby's blood pressure. It was pretty high from the adrenaline while he tried to decide between punching my doctor in the nose or realizing it was ok, he was my DOCTOR! But my point is, most non hypochondriacs don't see doctors regularly. So it is a little weird to have to go as often as I do.

I have been seeing my endocrinologist monthly since January. My control is not where either of us would like to see it so he makes adjustments and we look at the results in a month. Since I have been trying out the continuous glucose monitor I have been going even more frequently. It's not too bad. He's an endocrinologist so I get to keep all of my clothes on! And the Mini Med rep not only lets me keep my clothes on, he keeps the door wide open so nobody can think anything inappropriate is going on.

I try not to spend too much time thinking about the fact that my endo knows a lot of things about me based on the info he gets every time he downloads my pump. I've seen the printouts. You can piece together a lot of things if you wanted to! I'm sure he doesn't read too much into when and why I suspend my pump. But for me it does feel scary to have a pager sized piece of equipment tell so much about me.

Today I went in to get the iPro continuous glucose monitor for insurance purposes. Dave told me that I wouldn't be able to see any blood sugar readings on my pump. So I should do whatever I normally do. Then he told me that the more info I write down the better it is for everyone to analyze the data. So I have to record at least 4 readings a day. No problem. And it's highly recommended that I share what I eat and exercise activity levels, etc.

I'm back to feeling like a lab rat. I hate food logs. I am no Pamela Hansen (Running With Angels). I know I eat junk. Why would I want to write it down and risk being judged for my poor food choices? Dave could sense my hesitancy to the food log. So I told him I was having flashbacks to my second pregnancy when my perinatologist insisted on food logs. Then she would look at it disapprovingly and tell me that none of the food was healthy especially for a diabetic. I loved when she lectured me on Ramen noodles. Thanks Doc, my husband just lost his job, we have insurance until the end of the month (2 days after the layoff), I'm entering my third trimester of a high risk pregnancy, and you want to criticize me for eating cheap Ramen????

I'm getting over my personal privacy issues. But any invasion of my privacy that affects my health puts me on edge. We all draw the line somewhere.

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