What doesn’t kill you…keeps you alive?

[Long post... want to skip to the "point?"]

This has been a challenging summer for training other people to manage the Bear’s diabetes. Since the BHE and I both work full time and we can’t afford to pay $15/hour full time to have our (amazing!) babysitter care for her 40 hours/week, we signed her up for several different camps to get through the summer. Every time a new camp starts, I have to try to explain what they will need to do with Amalia’s meter and pump at snack time, and what to look out for the rest of the time. So far, we haven’t had any camp leaders or counselors who have ever had a kid with T1 in their program – not even one that is older. All of this results in some sort of compromise between the “best” diabetes management and the most camp fun (with the least disruption to the camp). The first morning, the counselor looks at the info I have brought, looks warily at Amalia’s blood glucose meter & pump, and tries to smile. I smile, try not to speak too quickly or in diabetes jargon (the pump delivers insulin to her, not “bolus”), assure them that the Bear can help with some things (like bg testing) if they can just help with reminders, counting carbs (“and everything is labeled! See how easy?” smile. smile.), and listening to her if she says she isn’t feeling well. This really doesn’t cover how quickly things can go wrong, that a million other factors may affect her bgs and therefore her emotions, physical wellness, etc. But, panicking the counselor really won’t do anyone any good either. Most of the camps are only 1/2 day and it is much more likely that the one bg test & snack in the middle along with the encouragement to call me at any time will work out just fine. So. Today. First day of yet another camp – we get a bit of a rough start because of a blister so we aren’t as early as I had hoped. Still, the head counselor is an adult (nice, since all of the counselors at rec camp are in their early 20s and don’t inspire confidence) and she seems happy to take the time to look everything over. We go through the routine and though we don’t look at the pump itself or do a “practice” bolus, we walk through the instructions with pictures and she really seems on top of things. The Bear has been entering carbs into the pump more often these days too so I am feeling pretty good about the whole thing. I drive 1 hour to pick up my mother and take her to a neurology appointment about 20 minutes from her house. [Did someone say Sandwich Generation?] On the drive to the office, I get a call from the office. They have done her bg test (226) and just want to doublecheck that they understand the procedure from there. So, we talk through the Bear eating her snack, them adding up the grams of carbs, entering the bg number into the pump, then the grams of carbs, then delivering the insulin. All good. Just as we are about to walk into the doctor’s office, I get another call from the camp: “We’re not sure what happened. We put in the bg number (226) but never got to put in the grams of carbs and now it is delivering insulin but we don’t know how much. {deep breath. maybe it is just giving a correction for the 226 and I can walk them through entering just the carbs once this dose is complete}. They explain that the Bear was entering stuff and before they got to telling her to enter 20g for carbs she said “oops – I don’t know what I did”, they looked at the pump and could see it was counting up the dose. By the time they called me (not long, but pumps deliver boluses quite quickly), and I asked them what was on the screen, it was up over 8 units and counting. {8 UNITS! When she probably should have had about 1.2????} I asked them to look closely and be sure there was no decimal point – that it wasn’t 0.8. No, definitely (now) 9.something and still going. Tried to remember canceling bolus to talk them through it but it finished before we got to the right menu. {At this point I can feel my heart racing, my eyes burning, my brain scrambling to both sound calm and give them good instructions. Of course, all I want to do is scream, hang up the phone, abandon my mom in the waiting room, and drive 1 hour+ back to the camp} They were away from the camp so didn’t have access to all the food packed in her bag but did have a granola bar and they were heading back right then. Had them unclip her pump, give her the granola bar, and told them to test her as soon as they got back & to call me right away. The counselor asked, “just how dangerous is this?”. Someone who wasn’t really me calmly explained that too much insulin could be very dangerous and it was very important to keep giving her food and drink and testing her bg. The person who was really me was internally screaming, crying, and scared – so scared. It’s amazing how quickly your mind can think of options, judge them, and then move on to the next one. I contacted the Bear’s (did I mention that she is amazing?) babysitter who said that she could get to the camp as soon as possible (she lives about 30 minutes from it) which would get her there about a half hour before she would have otherwise. We talked about what would constitute the need to go to the ER. I called our pediatric endo office to get their thoughts on what the right things to do were – and whether I should just have the camp call 911. They calmly said that first we should verify how much insulin the Bear actually got. Then calculate how many grams of carbs she would need to counteract the extra. Then, as long as she was able to take in carbs, there was no need to go to the hospital. This made me feel better. Passed this on to Super-babysitter and waited. When they got back to the camp and tested the Bear she was at 52 — I instantly did not feel better. Told them to give her a juicebox and all of the glucose tablets in her backpack (do those tubes hold 8 or 10?? couldn’t remember but didn’t really matter). Then to test her in 15 minutes and hopefully by then Super-babysitter would have arrived. Next communication was that the Bear did get 10 units of insulin, was at 89, chatty, and wanted to finish out camp (another 10 minutes). When she came out at the end she was 84 so I told the babysitter to keep her unclipped from the pump, have her drink another juice, and leave the pump unclipped until they could eat lunch. We did all the math and she could have that juice and her whole lunch without getting insulin. Through all of this, my mom saw the neurologist, I tried to pay attention, and I drove my mom home. Every instinct in my body said I needed to get to where the Bear was and bring her home. But, every rational cell in my brain said that she was safe, happy, and I should go to work as planned. I myself was 60-ish for my bg and even after eating 12 glucose tablets (all I had with me) my CGM still pointed down. So, I called work, then stopped at CVS for more chalky tablets and headed home. I am so done for today. I am scared for my daughter and for my mother. I certainly don’t want to deal with my own diabetes. I am worried about a rebound high for the Bear that we’ll spend the rest of the afternoon trying to fight without causing more hypoglycemia. I don’t want to send her to camp tomorrow or any other days before school starts. But. I can’t let my fear run her life. I can’t be the Angel of Death and try to control everything. At the end of 2013 I said that I hoped to be able to let go of some of my fear baggage so that I could let the Bear do the things she needs to do… These kinds of experiences are going to happen and I can’t let them dictate what we let her do in the future – though we can learn from them to try to prevent similar situations.

Insulin. She has to have it to stay alive. There are no other options. We are lucky to have the tools we have — an insulin pump, a CGM (which she isn’t wearing this summer because it is too complicated/overwhelming for all of these camps — arrrrrgh!), a fast and relatively painless way to test her bg, carb counting and food labels, and insulin itself. But, none of that can change the fact that miscalculating the dose of insulin can kill her. In trying to do the very thing that saves her life every minute of every day, we put her life at risk. How can this be? 

Posted in Balance, Getting it Wrong, Living with Diabetes, Medications, Others caring for your T1 kid, Sandwich Generation, T1 Kid On the Loose | Leave a comment

Who Has the D?

This past week we had* appointments with the Bear’s CDE and the practice’s associated social worker. I didn’t have anything specific for the social worker but was just feeling like it was important. The BHE assured me that this was fine — it’s ok to say that something feels important and what does she (social worker) think?

By the end of the hour, I felt like I had gone to therapy**. I thought that maybe the Bear would talk a bit about how she feels about diabetes, her pump, the CGM — all those mornings when she cries or screams about hating to wear her pump (which honestly aren’t very often but so traumatic for me that they loom large in my memory). Or that the social worker would get her to talk about school, other kids. Really, I didn’t know, but I didn’t expect to be talking about my guilt about the Bear’s eating habits, high bgs, combative lows. My. Guilt.

D-parents are in a strange relationship with chronic illness. They (we) are managing the illness but not physically experiencing the symptoms. [disclaimer: yes, I also have T1 so I experience the physical manifestations of this disease, but I don't experience the Bear's T1, only my own] We have our own feelings about the disease and its impacts but we aren’t the patient. I know many D-parents worry that they can’t fully understand what their child is going through, and I have that same worry. I was diagnosed at age 29, so never had to deal with diabetes at school or through the teenage years. At this age I think it somewhat helps the Bear that I also test my bg and change out pump sites. But at some point, that won’t be comforting — it will be one more way in which she wishes she wasn’t like her mother and she’ll need other people to talk to. <– That’s kind of a digression, sorry.

It’s bizarre to have the responsibility and worry of the chronic illness without actually having it. The social worker clearly sees this all the time with the families she is working with. The Bear seemed perfectly happy playing with the toys in the office and gave us both a look of disbelief when we wondered how she was feeling. Duh. Fine.

I set a few goals for our family around healthy eating and the Bear trying new things and we got our school orders from the nurse. And that’s kind of diabetes in a nutshell. Emotional struggles and everyday life; playing, talking, and solving problems.

*Well, when we got there it turned out I had the day wrong and we were there 1 week early. We drive about 1 hour to get to the appointment and of course I had taken time off from work. Our fabulous practice managed to do some magic and get us in to see the social worker about 30 minutes after our first appt was scheduled and then one of the nurses for pattern management, etc. I was so grateful.

**Which I have :) My therapist who specializes in chronic illness & T1 diabetes pretty much saved my life 6 months after my diagnosis.

Posted in Balance, Living with Diabetes | 1 Comment

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 | 19 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