This is a long, earnest post that some of you may not read because of its length. It’s a very important bit of writing for me, but I understand if you don’t read it all. Here it is in a nutshell: I have diabetes. I hate having diabetes. I’m trying hard to make that feeling a constructive one, which is hard . . . so very, very hard. I’m working with my endocrinologist to make it better, but I know it’s mostly on me to do it. So I’m doing a “diabetes reboot,” challenging almost everything I think I know and hopefully getting to a better place. And then I share some interesting diabetes links.
First off, I want to dedicate a little song to my diabetes:
Sorry about the language, Mom. Now that I’ve set the tone for where I was at the end of last week, on with the more constructive part of the post.
Last Thursday, two weeks after sending my CGM back to Minimed, I got a phone call from my endocrinologist’s office. There’s been a very regular cadence to this CGM process. On Thursday the 26th of August, the Medtronic Minimed rep attached the sensor. The next Thursday I put it in the mail. The Thursday after that, my endo got the results. And a week after that — three weeks after beginning the process — I got the first preliminary results over the phone. I had hoped to get the raw data in the mail this weekend, but as of today (Monday) nothing yet. Let’s cross our fingers that I won’t have to wait until Thursday.
I’m hoping to get some new insight out of the CGM data. What’s happening overnight? What happens when I exercise? Do I spike after every meal or just breakfast and dinner? What’s up with lunch anyway? What happens when I eat particular foods? These are things that you can only know with a lot of experience and data. The near-continuous blood glucose data and the logging are meant to fill in the gaps of my experience and correct more than one ages-old habit that’s been messing me up.
Now, I know that my endocrinologist and I are part of a team. She has the specialized knowledge about diabetes — knowledge that allows her to prescribe medication and that’s augmented by working with hundreds of patients (dozens of whom probably have type 1). So I’m trying to put the frustration of last Thursday’s conversation with my endo’s nurse behind me. (I’m not upset with my endo or the nurse at all, really.) It’s just that after waiting weeks, all of the suggestions were just . . . so . . . old-school. Other than the observation that I’m “highest in the evenings” nothing referenced the data itself. Reading between the lines of some of the suggestions, I gather that there must be food-related spikes and that I might be going low overnight.
But the suggestions! The nurse wasn’t wrong when she said that I might not like them. Trying a different bolus rate for dinner, I can get with that; it’s an experiment, after all. Telling me that I should probably eat different foods . . . grrr. It’s possible — likely even — that particular food choices affect my BG more than others and that there might be no way to mitigate those effects, but I felt like the diabetes/food police had infiltrated my inner sanctum. Instead of getting suggestions like “bolus earlier for that” or “keep track of your estimates for that food” or “try using a different bolus pattern,” I got the equivalent of a raised, disapproving eyebrow. And frankly I was a bit depressed and angered by the implications.
(For the record, we tried whole wheat pasta tonight. It was tasty enough, though the jury’s still out on the BG effects. It’s possible that yesterday’s ride is still sucking the glucose out of my blood and converting it to glycogen to restock my muscles, but I think that new dinner bolus rate might be too high.)
I would love to be able to tell these suspicions to my endo, but without a real accounting of all the different variables at work and some real confidence in my evening and overnight basal rates — which is actually what led my endo to suggest the CGM trial — I don’t feel like we can actually have a successful conversation. My A1c isn’t where I want it, and we’re both working to bring it lower, but I think we’re coming at from different, possibly conflicting directions. I’d love to have most things worked out so that we can have that kind of focused discussion on one problem area, but I suspect it’s going to be rough to get there. What depresses me most is that I had hoped to be at that point already.
Since that conversation with the nurse, I’ve had a few other conversations, mostly with Lisa, who is (as always) great. We’re redoubling our efforts to eat “better,” though we already eat much healthier than even a couple years ago. We’re recording the carbs in what we eat along with the resulting BG experiences. And she’s put up with a lot of what might pass for whining to the untrained ear.
I also talked briefly to Karen about this at the WEGO Boston Health Activist Meet-up last Thursday. That event turned out to be a good experience, but I was so disheartened by my phone conversation, which happened a few minutes before I needed to leave the office, that I probably would have just skipped it if I hadn’t been so excited about meeting Karen in real life. I learned some things that I hope to use with my own health activism, and I’m glad that I got to meet a fellow traveller in the diabetes online community.
Karen showed me her nifty insulin pump, which is one generation newer than mine — I liked what I saw — and she answered all my newb questions about her CGM. This is one of those times when I think a new gadget would be quite beneficial, and I really want to get one. Frankly, I just need to know what’s going on more often than I can see now, and I need alarms that tell me if I’m going too much in one direction. I want to see for myself whether my beloved chocolate croissants are worse for my blood glucose than my tasty but rather pedestrian strawberry All Bran cereal. (I don’t think they are, and Karen agrees that I should not give up my weekly chocolate croissant fix.) I want to see when I should start lowering my pre-exercise basal rate. I want to get to the place where I can have a meaningful conversation about particular events and not just broad WTF trends.
Since last Thursday, the internal dialogue about the mixed messages of freedom and diabetes has gotten louder. Pumps are supposed to be liberating, and they can be. I’m never going back to the strictures and twice-daily hypoglycemia of the NPH regimen that I had before the pump, but I’ve never had lower A1c test results than I did when I was taking “the devil’s insulin” (as saraknic called it). Device manufacturers all but promise us better test results while eating what we want, which turns out to be a bit of an oversell. I don’t like that the thought “I’d be happy if I could just not eat” even occurs to me. A life of endless trade-offs brings to my mind Christopher Hithcens’ recent reflections on his own mortality and some of the life choices that gave him great pleasure but probably also gave him esophageal cancer.
I hope that I’ve found a way out of my current “food/insulin is the problem/cure” conundrum that leaves me feeling trapped in a world of choices I don’t like. It won’t be easy, and it looks a lot like the path I’ve been on for the last year or so.
It’s a reboot.
Yes, I’m basically going — if not to the very beginning — to a “last known good place:” a place where I’m confident that my morning basal rates are “good enough” to get me through the morning without food if I want that; a place where my morning bolus ratio gets me through everyday except Monday just fine; a place where afternoons are mostly worked out, and lunch works, too; and a place where exercise starts higher than I’d like but ends in a safe place. And from that starting point I’m going to continue to work my way through the day, finding where my rates and ratios are off. I’m going to look at that CGM data from earlier in the month when it arrives and answer as many of my own questions as I can, pose the rest to my endo, and have a real conversation. I’m going to get those CGM sensors that talk to my pump and watch what happens before, during, and after exercise. I’m going to continue along the healthy eating road that Lisa and I have been traveling and see what kind of impact that really has and (only then) decide whether certain foods really have to leave my regular menu.
And that’s where I am now, trying to stay positive whilst being my own pancreas. (I still love you, Lil’ Paperweight. You still produce happy digestive juices I need. It’s the diabetes I could do without.)
Because I’m trying to stay up-beat after the beat-down, here are some things I learned about my disease in the last week while awaiting my own data:
- Did you know that type 1 diabetes is an autoimmune disease? Read more about it. (Hey high school kids, if you have to do a report on T1 diabetes, that’s your primary source.)
- The word of the day is “micro-biome” — although “gut flora” is a good phrase, too. There’s some indication that the bacteria in your digestive system (among the 90% of your body’s cells that are alien) play a role in developing type1 diabetes. Of course, viruses have a part to play in the development of diabetes, too. Then again, there are rogue proteins at work, too. I wouldn’t be surprised if researchers are close enough to understanding the factors that go into the development of diabetes that they’re able to induce diabetes in laboratory animals within the decade. Producing disease is, ironically, an important step on the way to being able to cure it.
- One of the big annoyances with insulin therapy is that there’s a lag between current “fast acting” insulins’ abilities to lower blood glucose and the quickness that food is metabolized into blood glucose. I’ve been trying to prevent the resulting “spikes” that happen with some foods by delivering my insulin boluses 5-15 minutes before meals, but I can’t tell for sure whether it’s working. Even faster acting insulins (like this one) would be useful.
And I promise that in the next post I won’t drop the F-bomb again.