The View from 2:30 a.m. – DSMA July Blog Carnival

I’ve been thinking about the topic for the DSMA July Blog Carnival — mostly thinking it is impossible:

We usually talk about how we deal with different aspects of diabetes, or things that would help us deal with those aspects.  This month let’s change things up a bit.  We’re going to revisit a question from the Open Chat on June 18th and come up with something about diabetes to change.  That’s right, we want to know . . . .

If you could change one thing about diabetes, (besides not having it), what would you change? Why?

ONE thing?

Every time I think of A thing to change, I think of something else that I should change instead. Prioritizing the things changes based on the situation it seems. Kind of like diabetes :) But, since I am awake – again – at 2:30 a.m., I’m going with the situation I’m in.

I would change the relentless unpredictability.

Tonight was supposed to be the last night of a pattern test before changing basal rates overnight. I have been mysteriously running high bgs starting at around midnight that then stay elevated until morning. The good news: My basal rates for the second half of the night are good — keeping me steady at whatever number I enter at. The bad news: If I enter at 280, that’s where I am at for 6 hours, waking up feeling like a large mammal has been sleeping on top of me. A temp basal to combat the midnight high has just pushed the high to 4 a.m. – so… what does that say about those later basal rates?

“supposed to be” Instead, I woke up at 2:20-ish to that very harsh dexcom alarm signaling 55 bg (or lower). A test revealed a bg of 60. Glucose tablets, wait for a while, and #CGMnow 81 and rising. True: had I changed some overnight basal rates, I probably would have been 40 at 12:30 a.m., so that makes this good, right? Tell that to my sleep-deprived brain (or maybe, wait to tell my brain until it is awake enough to make sense of what you are saying).

Of course, since I’m awake anyway, I test the Bear’s blood sugar. She was 155 at 10-ish when we went to bed so tonight would have been a night “off” from this middle-of-the-night test. The past month or so if she has been around 160 at 10 p.m. she wakes up in an awesome range of 90-120 — and with good numbers at 2:30/3:00 a.m. This time? She’s 190 and since she isn’t wearing her dex right now (another story) I don’t know which direction that is heading. Pump suggests 0.1 correction which I do but thank goodness the BHE gets up early and will test her before I have to wake up.

Overnight is important in diabetes. And, it should be easy: you aren’t eating or exercising, there’s nothing like that to mess with bg numbers. One third of the day really has an impact on averages and HbA1c. If you can get the overnight “right” you’re way ahead of that A1c game.

Are you listening diabetes?

So, if we could just set nighttime basal rates and be done with it, have 8 hours of stable, in-range bgs, it would make managing all of the other things that I wish I could change about diabetes more tolerable – more manageable.

How about it?

This post is my July entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2014/06/july-dsma-blog-carnival-4/

Other good reading on this topic:
Summer Basal Changes – Meri @ Our Diabetic Life
[And that other blog post(s) I read recently that explained the 1/3 of our day and impact on HbA1c that of course I can't find now... Post in the comments if you have a link!]

Posted in Getting it Wrong, Living with Diabetes, Pump Management | 18 Comments

Almost, but Not Quite

*with update
I often wear either my pump or CGM in visible places — especially in the warm weather since I use my arms for the Dexcom and sometimes for my Omnipod as well. Basically, I wear the devices where they work best for me and I don’t mind if people ask me about them.

This morning while waiting in line at the coffee shop a man asked me about my Dexcom transmitter on my arm. I did what I usually do – say that it is a continuous glucose monitor and then pause to see if that satisfies the person or if they are interested in knowing more. He was – asked a few questions about how it transmits data, what kind of information it offers and I tried to give upbeat answers about the transmission to the receiver (people are always impressed to see the graph), the helpfulness of getting trending info, and- yes, it is really cool.

I was feeling fine about the encounter and then as he was going to pay for his coffee and we were chatting about what we were going to get to eat, he looked back and sort of laughing said, “so, I guess you won’t be getting a muffin then, huh?”

Fail

 

Sometimes it just feels like too much to try to explain a part of diabetes management when all the assumptions, misconceptions, and thoughtlessness seems to be so much more pervasive than the education & advocacy efforts.

Later today, I read a fabulous blog post by @T1Runner (Steph Tomko) listing the “10 things you have wrong about diabetes.” I don’t have any way to send it to the stranger in the coffee shop but I encourage you to read it and pass it along to anyone you know who could use it. I especially appreciated #8 and #4 but the whole list is very well done. Regarding the cinnamon cure: “Why in the hell would I have two medical devices attached to my body if I could be cured with a spice sold at my grocery store”  And, on everyone’s favorite comment: “I DO look like a diabetic.”

I’m not going to stop answering people’s questions, and I will correct misinformation when the person seems receptive, but I could do without the snarky muffin comments.

*update 7/11: and it can be nice to know that it isn’t just me who gets annoyed. After reading this post the BHE said, “I wondered if you thought that guy was as big of an ass as I did.”

Posted in CGM, Getting it Wrong, Living with Diabetes | Leave a comment

Time for a Change

…and not a site change :)

Let’s get the “bad” news out of the way quickly & not dwell on it: the BHE had a very serious heart attack this past weekend. He is young, exercises regularly, eats a fairly healthy diet, and isn’t at a risky weight. He doesn’t smoke. There is a family history of heart attacks, but all more than 10 years older than he is right now. We are lucky. He got to the hospital in time and our hospital has a cath lab so he got the immediate care he needed to survive. Because there aren’t many risk factors to mitigate, a big part of his recovery & ongoing prevention strategy is medication — Statin, Beta Blocker, ACE Inhibitor, aspirin, etc.

I’m so grateful that we live in an age, and an area (not to mention insurance), where we have access to treatments like a cath lab and things as “easy” as pills that can help my hubby live a long, healthy life. With that in mind, I need to take a new look at my own refusal (so far) to start a statin for myself. I have had 3 endocrinologists bring it up with me — my LDL cholesterol hovers at the top of the “normal” range (though my HDL is off the charts). One of the endos wasn’t really all that interested, just brought it up and when I said I didn’t think I needed it, let it drop. The second one had a very thoughtful conversation with me about it and conceded that without long-term studies on T1s with in-range A1cs, he couldn’t say definitively that without a statin my cardiovascular risk would be greatly increased and we left it there until something changed. The most recent “discussion” consisted of the temp endo telling me that A1c doesn’t matter at all, if a T1 has ever had a high blood sugar then they are at huge risk of stroke/heart attack and not taking a statin was basically committing suicide. He told me that there was plenty of research to support that conclusion though didn’t point me to any of it. [wow, that appointment went so well... but that's really a different post.]
diabetesandheart

Now, things are different. Something has changed. I can see that even a small risk is too big. We have a 6 year old — she needs both of her parents as healthy as possible. I have thought that if I was doing my best with blood sugars then complications wouldn’t apply to me (I know, dumb). After all, isn’t that what the DCCT showed us? The truth is a lot closer to YDMV (your diabetes may vary) and your HEALTH may vary. What if the high blood sugars I do have do enough damage to my blood vessels to cause heart disease? Will I still feel justified in choosing not to take the statin?

I’m still going to do some more research while I wait for my next endocrinology appointment (with a new endocrinologist, thank you very much) and go to that appointment ready to talk seriously about my options and the best possible treatment regimen that offers the most protection with the least amount of risk. And, in the meantime, we should learn a lot about general healthiness as the BHE goes to cardiac rehab. I can’t say for sure that I will choose to go on a statin, but I can say that I will be considering it with a more open mind.

 

Posted in Endocrinologist, Medications, Uncategorized, YDMV | Leave a comment

Featuring: Presets

I have been using a pump since 2006-ish and I have only used 1 pump – the Omnipod. It has been through a few upgrades, both to the PDM (personal diabetes manager — the meter & pump control) and to the pods. Still, I mostly use the pump in the same ways I always have. When my hypoglycemic unawareness got really bad I did start using temp basals much more, but other than that not much has changed.

From the start I have loved the flexibility of having multiple basal profiles. I have a pre-menstrual and menstrual profile since I tend to run high with PMS and then crash as soon as my period starts. I have whatever main basal profile I am using. Then if I am trying out some changes because of basal rate testing or some pattern I notice, I’ll usually create a profile based on my main profile where I can make changes without losing track of where I started from.

I have always used basal settings, i:c ratios, and correction factors that are pretty specific. I usually have from 4-6 different time breakdowns for each setting based on meter & CGM downloads.

But, the Omnipod does have other features that I have never used. One of these is the food diary. I have looked at it maybe 4 times but it never has what I am trying to look up (sorry Insulet!). These days it really doesn’t matter since I use MyFitnessPal or Calorie King on my phone but I have always wondered why Insulet bothered to build in a feature that is all but useless.

The other thing that I haven’t delved into as much is part of the “Presets.” This part of the menus offers choices of “Temp basal presets,” “Carb presets,” and “Bolus presets.” Basically you can use these as shortcuts for food, boluses, or temp basals that you use often/over and over. I started using the temp basal presets almost a year ago when I was experimenting with temp basals as a tool for managing hypoglycemia. I knew that having a temp basal along with treating a low could be helpful in decreasing the length of time I stayed low — but also that I tended to forget to set a temp basal at those times. Also, I tended to need a particular temp basal for particular workouts. And, I often need a +95% basal for 3 hours after a pod change (lots about this phenomenon on the web). The temp basal presets really are a great shortcut since it saves both the amount of increase/decrease and the duration and you can name them (“Pod Change,” “Exercise,” etc.). More recently I have added “Post meal high” (+30%, 2 hours) and “Lowish” (-25%, 2 hours).

I’m just starting to explore Carb & Bolus presets. With MyFitnessPal, I like how easy it is to “reuse” the foods that I eat on a regular basis. During the week, I usually eat the same breakfast every day and the app offers up my frequently used foods for easy adding to my log. I think that the Carb presets should work pretty much the same way for me. That menu offers “Favorites,” “Snacks,” and “Meals.” So far I have only added 1 snack (PB crackers — 16 g) and 4 meals (3 of which are breakfast things I usually get at our weekend coffee shop). I’ve been slow to add things in part because I usually think of it when I am bolusing and it needs to be done separately from that. I hope that it will keep me “honest” with my carb counting for common things that I probably SWAG too often.

I don’t know if I’ll ever get around to setting any Bolus presets. That is for specific unit amounts of insulin but I rarely dose insulin that way. I’m always bolusing based on bg + carbs (meals/snacks) or bg alone (when a correction is needed). I can’t think of any times when I just think, “I need 1.6 units of insulin.”

I feel very lucky to have the diabetes management tools that I do and I want to be sure that I’m using them to the fullest capacity. Often, all the features of a device only get explained at the beginning – usually when a person is overwhelmed with the basics and the change that comes with dealing with a new device. My various endos (since my first one whom I will probably always miss) haven’t been very familiar with the Omnipod (or the Dexcom for that matter) so haven’t ever talked with me about using it any differently.

So, how can we learn more about how to use all of the tools we have access to? How do we learn about things like dual-wave or square boluses (boli?)? My answer is the Diabetes Online Community. For any HCP who wonders whether the DOC is useful – this alone is worth its weight in gold (ummmm – that doesn’t even make sense when talking about a digital community, but you probably get my point) — real-life examples of how people use their tools. I know that some people are lucky enough to get that kind of help from some part of their medical team, but I think most of us are figuring this part out on our own*. Please keep sharing all of your stories, tips, tricks… they make a huge difference.

*And some of us are using one pump for ourselves, but have a child (or other family member) who uses a different pump. We/I really need those tips & tricks for the pump we aren’t as familiar with. I have gotten so much help with our daughter’s Medtronic pump by reading blogs.

Posted in Blogging About Blogging, Living with Diabetes, Pump Management | Leave a comment

Lesson learned?

Spoiler: the answer to this post’s title is “no.”

Last night I was running low for no good reason. I was fine before dinner but about 20 minutes after dinner my CGM started alarming that I was under 80. I’ve got the low alarm set at 80 in an attempt to catch bgs before I get really low and start to reverse my hypoglycemic awareness. “Attempt” is the operative word in that sentence. That “under 80″ translated into 57 on the CGM and 49 on my meter. Rather than grabbing a juice or some glucose tablets, I thought I would have some dessert. A couple of pieces of toffee (homemade by a friend – so good) later, the CGM was quietly hovering in the 60s and I was sure it would go up from there. My dinner had a little more fat than usual (hubby’s mac n cheese – also SO good) so maybe my bolus timing was just way off.

At 9:30 pm or so, after putting a new site onto the Bear (since she hadn’t been below 200 all day and mostly far above that, and was 322 after a correction at bedtime), my CGM was back at it. “Below 80! By which I mean 49!” it beeped. Still bypassed the juice or glucose tablets and grabbed some sea salt popcorn instead. The CGM graph never budged. Tested at 55 — perfect opportunity for some more toffee! Finally up to 75 at 10:30 and time for bed. I could hear that little voice inside saying that all that food I used to treat the lows would haunt me later but I didn’t want to bolus or set a higher temp basal in case the 75 didn’t go up.

2:30 a.m. Alarm goes off to get up and check the Bear (new site, etc.). She was doing well in the 150s. And, me? I was a cotton-mouthed, headachey 323. Awesome.

Lesson: Treat low bgs with measured juice or glucose tablets. Once bgs are stable, eat if hungry or if continued activity requires fuel.

Is this something new? Something that is just occurring to me? Ummmmm, no. It never fails. If I try to treat a low with “real” food — no matter if it is healthy (an apple) or just sugar (toffee) — I will be obnoxiously high later. And it will be enough later (since my lows take a ridiculously long time to recover from – depleted liver glycogen response, etc.) that a bolus can’t really work anymore – the timing is too far off. But, also since these lows take so long (hours sometimes) to turn around, if I try to bolus for even some of the food then I just prolong the low even longer.

Juice. Glucose tablets.

How many times will I need to see that 323 on the meter before I stop trying to treat lows with food? (and, yes, this is the perfect example of the “definition” of insanity…)

Posted in Getting it Wrong, Hypoglycemia Unawareness, Living with Diabetes, YDMV | Leave a comment

Give the Kid a Break

Recently the Bear asked if she could not wear her CGM anymore. [insert heart breaking noise here] I told her that if she wanted to she could take a break for a little while but that wearing the CGM helps us stay healthy. When her sensor quit she was still saying she wanted to take a break, but I was putting on a new sensor myself that day and (to my surprise) the Bear changed her mind and we put on a new sensor and started it up. This morning, that sensor fell off and there wasn’t time to put a new one on and get it calibrated before school so she went without one. Tonight when I got out a sensor she asked again to “take a break.”

This is uncharted territory for us. When she didn’t want an insulin shot or doesn’t want to wear her pump, there is no negotiation. When she doesn’t want to test her bg, still no real choice. The CGM is a little different though. It’s a great tool in managing her diabetes and as the person who manages her diabetes I’m not ready to let her decide not to use this particular tool. However, I also know firsthand what it is like to wear these invasive devices and how nice it can be to get a break. She has so little “real estate” for pump and sensor sites – even being careful about rotation we can see the evidence of past locations. Over the weekend, one of those past locations (pump site) got a little swollen and red, painful to the touch and the pediatrician called cellulitis today and we left with topical & oral antibiotics.

So, I said OK to a break from the CGM. At the end of the week I will need her to put on a sensor to get us through a change in our routines but the next few days are “normal.” We haven’t done dance class without the CGM graph, but also haven’t needed to pull her out because of a CGM low. Mostly having the CGM overnight hasn’t gotten me any more sleep anyway so that won’t change.

I’m more curious about how difficult it will be to get her to put another sensor on – or if knowing a break is possible might actually make it less onerous for her. Will she try to negotiate breaks from other diabetes tasks? Will she see the CGM as less important because I let her take a break?

I’m sitting next to the bookcase that holds all my helpful diabetes books like Kids First Diabetes Second, Diabetes Through the Looking Glass (seeing diabetes from your child’s perspective), and Balancing Diabetes — And I have learned so much from the DOC with stories of growing up with T1 and parenting T1s today — but there are no easy answers. I don’t know if letting the Bear take this CGM break was the “best” decision but it felt right at the time. Now I need to go test her bg and without any arrows, make the best decision I can for what to do next. And, tomorrow morning her sleeve won’t get caught on the sensor and her skin won’t itch from that adhesive and she’ll only have one medical device attached. I wish I could give her more freedom than that, but it’s something.

 

Posted in Balance, Books, Burnout, CGM, Living with Diabetes | Leave a comment

ODDV (Our Diabetes Does Vary) – The Multiple Pump Edition

My daughter and I both have T1 and we both use a pump & CGM, but we don’t use the same pump*. I have been using the Omnipod since I started pumping in 2006-ish** and so have never used a tubed pump for myself. When the Bear was diagnosed and both we & her medical team wanted to get her pumping ASAP (shots and a picky toddler eater are a very hard combination), we decided to go with the Medtronic (she uses the Revel) pump for her. The amount of “real estate” you need for a Medtronic site is considerably smaller than that for the Omnipod (even though actual cannula size is basically the same***)  which makes a big difference on a small body. Also, the endo practice had the most experience (and had good experience) with Medtronics & little kids so I was happy to follow that recommendation.

A pretty steep learning curve commenced. The theory of dosing insulin using a pump is the same, but everything else about using two different pumps is not. I despaired of ever being able to do a quick site change on the Bear as I sat there with the instructions for Mio sets, painstakingly following the step-by-step notes. Finding things in the Medtronic menus was almost comical for me. Of course at this point, 3+ years of changing sites every other day and changing settings more often than changing shoe sizes (which happens incredibly often in growing kids – what is up with that?), I can walk someone through pretty much anything over the phone without hardly thinking about it (“Press ACT three more times then it will start counting up as it delivers the insulin”).

There’s always more to learn though… I’m starting to wish we could branch out some for sites for the Bear and since she is adamant about not using her abdomen (which doesn’t leave many options), I’m seeking out other alternatives. I know lots of folks use their arms (which we use for her CGM so I know it’s a possibility) and legs (untested territory for us) but I’m having trouble figuring out how that is going to work with the tubing. I saw this Loop post on Twitter today about trying a new site location on the arm and it does mention the need to consider the tubing (“The tubing length really matters in this case since the tubing now has to reach from my arm, around my shoulder, and down to my pocket where I typically clip my pump.”). But I still can’t picture how this would work in practice. 

When I am trying to figure out a potential new site for the Pod, I just try it out. I mostly use abdomen, but have used legs, lower back, arms… It’s not that easy with the Bear. It’s also harder for me to tell how important it is to try new site locations. On myself, sometimes it just feels like an area is getting overused. We are very good about rotating within the area we use on her, and her doc/cde haven’t seen any problems yet. Still, they always ask me if we have tried here or there and I know that eventually we will need to branch out. I also know that whatever we try, the tubing issue is likely to make a difference to her. She already gets irritated with the tubing now and has even torn out a site once or twice herself in a fit of pique over it****. 

In so many ways I feel lucky to have T1 myself when it comes to managing the Bear’s diabetes — I already knew how to carb count, had experience with making changes to pump settings, etc. I have no advantage when it comes to other things though (like devices that I don’t myself use) and have no IRL friends to ask at this point. So, I need my DOC friends… what sites do you use for tubed pumps and tell me specifically what you do with the tubing!

*We do however use the same CGM – the Dexcom G4
**I can never remember when I started using various medical devices
***Disclaimer – I have no facts handy about actual size of the cannulae for these two devices. The difference does seem to be that with the Omnipod, the entire “pump” sits on top of the insertion point while with the Medtronic you just have the connector bit and the adhesive
****Admission: I secretly hope this means that she will want to switch to the Omnipod when her warranty is up. I don’t work for Insulet or write for them or anything, just love my pump :)

Posted in Pump Management, YDMV | 1 Comment