A Few Days after the Endo Call

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.

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12 Responses to A Few Days after the Endo Call

  1. mary says:

    man, this sucks! the post about your cape ride was so awesome, and it made me super jealous about your sweet biking abilities, and now you’ve gone and revealed that life isn’t all rosey – that you were probably kicking ass during that ride because you were thinking of all of the bullshit that you’re currently having to deal with. everyone knows that being pissed off leads to a harder workout.

  2. Lorraine says:

    FWIW, after a year of CGM use with Caleb, I have such an increased confidence about his care in general – how he reacts to certain foods, activity, etc. Things are still far from perfect, but they are better. The information CGM has provided has been pwerful.

    I agree with Karen. It’s easy for someone else to suggest you change your eating habits. Don’t give up those croissants. It took a lot of effort, but the really important foods we didn’t want to eliminate from Caleb’s diet, I tracked and analyzed and came up with a dosing plan specific to each. Again, not perfect, but he’s able to eat what he wants happily.

    My best to you. :)

  3. Jeff Mather says:

    Sorry to harsh your buzz about my awesomeness, Mary. It’s true, there’s an awful lot of riding I do in order to give my diabetes the finger. But these longer rides are still mostly about getting out and doing something that I’ve loved even before diabetes came along and that leaves me feeling happy and fit. Plus, I just love going places under my own power.

    Sadly, I’m not really super-fast or very badass, but I can fake it from time to time.

  4. Jeff Mather says:

    Lorraine: Thanks for the encouragement and the CGM affirmation. It isn’t said often enough, but the parents of children with diabetes — including parents of adult children with diabetes — don’t get the recognition y’all deserve considering all the care you give and the worrying that you do.

  5. Nancy says:

    I’m glad that you do realize that I do worry about you greatly. As your parent, if I could take the disease from you upon myself, I would do in a heartbeat.

    Lisa is so awesome to be so supportive of you and she always has your best interest in mind.

    I’m glad you had a great ride. Flat ride…how nice. Black socks…..bet that was sexy!

  6. Jeff Mather says:

    Okay, two things, Mom. (1) It’s very sweet of you to say that you would take my diabetes from me if you could. Very sweet. But I wouldn’t let you have it. It’s mine, and I don’t want to share it with anyone — especially the people that I love. :^) (2) Even though you’re just talking about my socks, I think I’m a little creeped out now. . . .

  7. Karen says:

    Oh Jeff, I knew you were aggravated about the CGM results but I honestly didn’t realize just how disheartened you were!! I’m so sorry – I know I wasn’t nearly supportive enough. In fact, I clearly remember saying that it’s okay that the results weren’t a flat line because it shows you the areas that need work. But in retrospect, that sounds so rude and I wish I had phrased it better. I was trying to say that if problems areas are there (and when aren’t they when it comes to The D), it’s good that the CGM reflects them so you and your endo know where to start working. It stinks that she seems to want to simply rule out foods – I agree with you that it’s better to nail down a bolus pattern to help out when you chose to indulge. (I still stand by my statement that the chocolate croissant must stay!!)

    The most frustrating thing to me is that there are so many factors that effect our blood sugar – and it makes it so hard to figure out what is going on. Is it food choices? Is it exercise? Is it a rebound from an undetected overnight low? I’ve found that while a CGM doesn’t always give magic answers to these things, it certainly gives a lot more insight and can take out some of the guess-work.

    I look forward to seeing how the diabetes reboot works out – I think it’s a great idea and I salute you for doing it! I also hope you are hooked up to your very own CGM soon – they aren’t perfect but they sure are pretty great!

  8. Caroline says:

    Sounds to me like you’ve got two related, but separate issues at hand.

    1. The first part of the post: that you were hoping for a lot more advice and/or guidance from your endo, and you didn’t get it. Who knows? Maybe your endo has some really solid ideas about the specific data you collected, but the nurse had no clue. Or they couldn’t communicate their suggestions without somebody shelling out the bucks for an actual visit. I like that you are actively trying not to be mad at her or the nurse. Nevertheless, the implication that you are just “eating the wrong way” is uncomfortable indeed. Not only is it diabetes police-y, but….I feel like those pat suggestions from providers are the equivalent of walking into a brick wall.

    2. The second part: that you have been working hard and not getting the outcomes you want. You’re eating right and exercising (yeah bike riding!), but your A1C isn’t where you want it. You’re on the pump, testing a lot and taking advantage of the CGM, yet you’re still facing the food/insulin/life tradeoffs. I think this is one of the deepest, most soul-sucking frustrations that PWDs face: that we find ourselves on a self-care treadmill, furiously pumping our legs without actually moving forward.

    And it all sort of ties together because the insinuation that we just aren’t trying hard enough– when, in fact, we ARE– is crushing. So high-five for keeping on trying with your d-reboot (d-boot?). In thinking about my experiences with endos, and blogging about my own issues with the diabetes/rest of life balance, I’ve realized that…it’s all on me. We’ve got support systems, cool, but I have to be the one to get my butt in gear and basal test like hell to make things run smoothly. (One friend who was extolling her perfect basals said she spent weeks on them. Eeek.) I have to be the captain of my food choices and realize that my endo is never *really* going to know when the chocolate is worth it or not. It’s a little cynical, but also strangely empowering.

    So this is all a bit long and rambly, but: don’t put too much stock in silly nurses. Test the heck out of those basals and insulin:carb ratios. Take charge of your CGM data, whenever you get it (soon, I’m hoping!!). I know this was a moment of frustration and anger for you, but I really believe you’ve got way more of a grip on how to do this than you think. Or than your endo thinks, for that matter. :)

  9. Jeff Mather says:

    Karen: You were fine. No worries. I wasn’t expecting you to give the one piece of advice that would fix things. Nor would I expect that you could divine that I was so frustrated and then feel obligated to cheer me up. This post notwithstanding, I tend to downplay my frustrations, work through issues more-or-less on my own, and try to stay positive while I try to fix whatever is going on. (I’m an engineer and my people are from Iowa, after all; we don’t like to make our passions other people’s concerns.)

    I can’t seem to fully express how much I was looking forward to some real, substantial advice of the kind that we in the D-OC are used to sharing when we have a discovery or learn something from each other. Instead, the pat “answers” that I got were banal and generic. It’s likely that I was going to be disappointed by the lack of new silver bullets in my arsenal; but to get the “results” in the way that I did was just demoralizing.

    Maybe one day when I get the data — they still weren’t in today’s mail — I’ll start to have some of the excitement back that I had in the run-up to the CGM trial and while I was wearing the sensor. I really did feel like my augmented cyborgishness was going to reveal secrets about the inner workings of my juices. This reboot is partly to regain some of that momentum.

    And I have to say again that meeting you was great and that hearing your CGM experiences was probably exactly what I needed from a fellow PWD last Thursday when I was beginning to doubt the value of the previous fortnight’s anticipation. The WEGO shindig was a good, constructive diversion, too. So, thanks for getting me out of the house and a little more integrated into the health activist community. (I believe more than ever that we have to take the reins of our own illnesses and help each other out as much as we can, because the D-OC’s information is often — usually? — more relevant than what we can get from our professional medical team in the small amount of time that they can devote to us, relative to how much time we spend with our diseased selves. :^)

  10. Jeff Mather says:

    Caroline: Thanks so much for sharing your thoughts. I suspect you’re mostly right with your analysis on both points of why I’m frustrated. You can add this to it: I’m a guy who likes people to think that I have all my shit together. But I need to get past that, because let’s face it: none of us PWDs really have the handle on our diabetes that we want — unless you’re having a baby it would seem. (And no, I’m not pregnant.)

    Add to that the fact that my doctor’s hospital is probably not the best in the area for insulin pump therapy. They’re getting up to speed, but I think they lack some of the experience that you need when you start thinking about insulin being the natural thing to tweak aggressively instead of food being the easy target.

    But that’s a digression. About that first point . . . I’ve been on the pump for something like nine years, but I’ve never had confidence in my basal or bolus settings. You would not believe the difficulty I’ve had convincing my last couple of endos that I have almost no faith in the validity of my pump settings, that they were pretty much just B.S. entered into a tiny computer, that there was so much in my head which is hard to reflect in log books, that I had heuristics about when to eat to prevent lows even when I had good readings, that I would often drop 150-200 mg/dL during exercise, and that I had no idea which part of my self-management regimen to start mucking with first.

    For a while, when I wasn’t exercising much, I had something that almost worked; but the premise was all wrong, as if I still had the earth at the center of the universe. Once I started getting back in shape in May 2009, losing weight, and poking and prodding at all of my pump settings, it became pretty clear how wrong a bunch of my assumptions were. I’m quite proud of the fact that after seven or eight basal tests over the span of three weeks — keeping Mondays holy for the chocolate croissant, of course — I found an AM basal rate that worked. Sure, it sucks to commit so much time (and hunger) to something that doesn’t show immediate results, but I’m motivated to finish the job. I’d love to see that same level of effort from my healthcare team.

    I need to figure out how and when to bring my endo and nurses into the D-boot. How to say “Lookee here. Everything was wrong before. I went rogue — as I’ve been for the last forever years — and these are the changes that I made, and now I have more confidence. Help me with a few specific areas. Because let’s face it, unless those athlete PWDs are lying liar-pantses, it’s possible to do amazing things with diabetes and have good numbers. Help me get what they’ve got.”

    And yeah, I’ve always felt/known that it’s all on me. There’s so much I want to do, after all. But I do love it when other people help in the best way they can. :^) So thanks for the encouragement, and we’ll keep up the good fight together.

  11. mary says:

    well, 100 miles is pretty badass – don’t let anyone tell you otherwise!

    also, that song is officially the most annoying song on the radio right now (on the station i listen to, anyway).

  12. Nancy says:

    So, Jeff, since you seem clear on what you want from your endo team…..why don’t you put it to them bluntly. Tell them you want their help and be specific with them as to how they can help. Tell them you don’t want generic/”pat” answers (avoid certain foods, etc.), but rather you want concrete constructive medical advice.

    I sense your frustration and don’t really know how I can help….other than to let you know I care and I’m listening.

    I tried to be funny in my earlier comment….but apparently it didn’t come across that way to you. SORRY!

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