Wednesday, January 30, 2013

Why doctors should listen to their patients

In late July and through August I spent pretty much a solid month trying to convince my doctors that the 70/30 insulin was being a giant jerk-face to me and I really wanted to go on an NPH at night with a fast acting insulin before meals on a sliding scale so that I could have more pinpoint control over my blood sugar. I've been on the 70/30 since I was diagnosed with diabetes because when I was diagnosed I was without insurance and even combining my income with Matt, we were under the poverty line. Most insulin cannot be accessed without seeing a doctor for a prescription, but the 70/30 in both Humulin and Novolin brands are sold over the counter. What's more, Walmart has one of those brands listed as a "generic" in a deal with their manufacturers as part of the Reli-On diabetes supplies generics and you can get a bottle for 25 dollars. This insulin is normally $85-100 a bottle, and one bottle lasts about 3 weeks at my dosage. Without the 70/30, I never would have been able to attempt to keep myself healthy, and I would have been in and out of the hospital with complications, or even comatose/dead by now.

However, 70/30 isn't without limitations. Once I take that first shot before breakfast, my entire day is planned. I have a certain amount of time I need to eat from the shot, then eat lunch, and a snack. The amount of carbs and the carb distribution of meals is determined by the shot. There is very little room for freedom. It's depressing enough, but coupled with my anxiety about the baby and my blood sugar early on in the pregnancy, it was a major trigger for panic attacks and deep, long fits of melancholy in the days of pregnancy before I was on Prozac and seeing a therapist. Even after I began my depression treatment, it caused a lot of stress.

However, every time I brought this up to the doctors that I was seeing in the high risk clinic, I was told "if it's not broke, don't fix it," referring to the great blood sugars I was maintaining. No matter how I tried to explain that the control I had wasn't the insulin it was ME, my self control, and my determination, and since I had insurance I felt it would only be beneficial to switch me to the fast acting/NPH separate combo, I felt like I was always dismissed.

Finally, culminating on the prenatal appointment the day before my birthday, I gave up asking. It wasn't ever going to happen.

Today, I was mentioning that I was having a lot of difficulty controlling my glucose levels lately, and that I admitted it could be stress, but that bumping up my insulin levels a tiny bit didn't seem to be doing much good. I spoke to Dr. Lanni, who suggested that we could have a prescription at the ready for me at my pharmacy of the NPH insulin and add a couple of units to that just before bedtime if I'm still having trouble with my fasting sugars because she felt that my post-meal sugars were completely fine and it was really just the fasting that were high enough to be treated. When I expressed my confusion at adding the separate insulin, and told her about my begging and pleading to go off the 70/30, she seemed as puzzled as I had been about why it wasn't changed. She pointed to my logs and said that she agreed with me both about the lack of freedom and the fact that 70/30 in pregnancy was so much harder to control when placental hormones come into play towards the end.

She patted my hand and told me that it wasn't too late to change, but I expressed to her that honestly I'd been completely worn out on the subject from fighting this battle back in the summer. I was willing to put up with the 70/30 for the last month of my pregnancy, and hopefully I would be able to get a PCP post-pregnancy that would put me on the separate insulin, or ideally an insulin pump. Just having her listen to me and validating that I hadn't been unreasonable in my desires to change insulin was a help, and having the option of filling the NPH if I'm finding that my fasting sugars don't get better is amazing.

I wish I had been able to speak to her in August. Diabetes still sucks a big fat one, but at least this pregnancy is almost over and Dr. Lanni told me that in general the placental addition to insulin resistance tends to level off around 36 weeks so hopefully for the last few weeks of pregnancy I won't be having to fight and grapple with my blood sugars.

In two days we have another measurement ultrasound, and I'm hoping that my struggling with blood sugars for the last couple of weeks hasn't caused any problems for Lorelai. I'm trying to assure myself that my control is better than I've been giving myself credit for and she's likely fine. My fundal measurements are exactly where they should be, so there's no need for worry. But of course I still worry. I'm probably the most annoying person I know. 

No comments:

Post a Comment