Real-Person Sick in Diabetes Land

There are lots of days that are mainly just normal. Despite the Bear’s ever-present pump and mostly*-present CGM sensor/receiver, diabetes stays in the background with school, homework, dance class, 2nd-grade drama, walking the dog, etc. occupying front and center. This is the way I like it. We “should” be doing a better job of pre-bolusing and staying on top of corrections on the weekends, but our general life/diabetes balance makes me happiest when LIFE comes out on top. Those are the times when it’s easy to feel that our lives aren’t so different from our neighbors & school friends.

Other times, it feels like we are living in some other universe entirely though. Thinking about school vacation/summer camps, traveling by air, birthday parties, and real-person sick all make me feel very, very different.

We are on week 2 of the Bear being real-person sick. A bit over a week ago, our Friday night was interrupted by the Bear vomiting. Fun! We took turns holding her hair back and cleaning up her bed, rug, bathroom floor… Even after some Zofran, she couldn’t keep anything down – not even water or ginger ale or tylenol. I stayed on the couch with her, feeling her fever and keeping an eye on blood sugars and ketones. A second dose of anti-nausea finally stopped the vomiting, but we spent the next 48 hours fighting to get her to drink/eat anything at all, trying to keep fever under 100, and giving scary insulin doses to battle ketones. Finally back to school on Tuesday.

sickday

from Pinterest (“Animas Sick Day Protocol”) 

Then, the following Friday she started having cold symptoms. Blood sugars were running a little high but ketones were thankfully nonexistent. Until… early Sunday morning. Wasn’t it enough that we were already losing an hour of sleep due to daylight savings time?? More vomiting – though this time it was due to post-nasal drip on an empty stomach. Sunday and yesterday were made up of a terrible cough, fever (higher than last time — hovering over 101), and eventually starvation ketones. Thought sure she would be back to school today (Tuesday), but the fever was still there and what little appetite she had yesterday was gone again eventually landing her with medium ketones by mid-morning. Went to the pediatrician since it is so unusual to have a persistent fever but they just confirmed our suspicions — nasty upper respiratory virus. Nothing to be done except fluids, food, rest. A couple of units of insulin for ketones, 4 bites of toast, some tylenol to get fever under control, and couch-dozing and here we are.

Hearing lots of “oh yeah, our kid was sick last week, what a pain,” and “thank goodness kids bounce back so quickly.” Every parent suffers when their kid is sick – no doubt about that. We all lose sleep and we all worry. Part of that worry is “will I be next?” Having to miss work is a problem for everyone, not just a parent whose child has a chronic illness. It’s not a competition.

But, it all highlights for me that diabetes does change things. The Bear being sick would be bad enough without worrying about ketones, trying to force her to eat, or giving insulin when it is totally counter-intuitive. I try not to worry about getting sick myself (luckily, I’m pretty resistent), but if I do stop to think about it I have to worry about what that will do to my own diabetes. All this additional energy, worry… what could we accomplish without it? We are ok, we are managing diabetes squared, and life goes on — but sometimes I’d love to just be managing life, without the complications.

From the fabulous Haidee Merritt’s FingerPricks (TM) series:

 

 

*Have I mentioned how frustrated I am with the recent delays with getting replacement transmitters for my own & the Bear’s Dexcoms? I don’t believe that prior authorizations take 7 business days (especially when the last time – 6 months ago? – they took about 24 hours) and it makes no sense that Dexcom itself has a “rolling backorder” that is adding another 1-2 weeks onto the process. 

Posted in Burnout, CGM, Living with Diabetes, Medications, Sickness, Sleep, Uncategorized | 1 Comment

Don’t Ask…

In general, I’m not shy about my own diabetes or the Bear’s. We test bgs publicly, don’t try to hide pumps or CGMs, and try to educate when questions arise. In the DOC, there are always conversations abouapancreashipt kinds of questions or topics are the most irritating, but I don’t really mind most of them. We get asked all the time if the Bear can eat something that other kids are eating, and it’s a chance to say that a healthy diet for a kid with diabetes is the same as a healthy diet for any kid (though I do love the poison cookies spiel). I hope that I’m modeling for her that we can share information about what it’s like to live with diabetes without feeling judged or getting upset.

I’ve been thinking about the one question type that I don’t seem to be able to take in stride: Is she/are you well-controlled? At least with the pump everything is being taken care of automatically. Is everything pretty stable at this point? (How is her diabetes? Is it better?)

Why does this line of questions bug me so much? I think it is because it strikes to the heart of the two things that I find most stressful about T1 Diabetes: unpredictability and relentlessness. There is no easy answer to how things are going diabetes-wise. How do you explain that things can go from perfect (oh look, the meter says 104) to sh*tstorm in a matter of seconds. Or that every choice brings with it the potential to create a bad situation — even if you’ve made that same choice 100 times before.

I want people to know that the Bear is amazing — that she can do anything she wants to and takes her diabetes in stride. But I also want people to know that trying to maintain balanced blood sugars is really, really hard and it isn’t ever going to get easier. Yes, I am grateful for all the technologies that have made things easier (or at least more accurate) than the days of boiling needles and testing bgs with urine — but the technologies also give us more to think about, more choices to make, and sometimes make it easier to do things wrong as well. I don’t want people to feel sorry for me or worry about me juggling my diabetes and hers, but I get very prickly when I feel like someone thinks it is “easy” or that I am making a big deal out of something that isn’t very important.
Yesterday I took the Bear and a friend out to lunch. The kids were great and we had a really nice time. diabetessleepThe restaurant was super busy and when I went to pre-bolus myself for lunch, I had second thoughts, feeling like our food might take longer than usual to be served. I decided to wait until the food actually hit the table. It did take quite a while to get our food and when it arrived there was a mixup with what the Bear’s friend had ordered and then there was a spill, and there was a little bit of chaos before we could really start eating. In all of that, my brain remembered my intention to pre-bolus as if I had actually done it and I never took any insulin for my meal — which was not low-carb by any means. Feeling lousy at the bowling alley after lunch (and being without my own CGM since the transmitter battery died about a week and a half ago and it taking forever to get the replacement), I tested my bg and was shocked to see 389 on the meter. I was still thinking that I had bolused for lunch but must have completely botched my carb counting. I corrected. Then, kind of freaking out, feeling both agitated and wrung out, and jumping to the conclusion that this was going to be one of those extended, stubborn high bgs, I gave myself 2 more units and set a temp basal of 195% for 3 hours. Rage bolus much? When we got home it finally occurred to me that maybe I hadn’t ever bolused and when I checked the records on the pump, sure enough – there was a bg test before lunch but no insulin delivery. By this time about 2.5 hours had passed and my bg was down to 92 — great, right? I cancelled the last 30 minutes of temp basal. About 30 minutes later I suddenly felt woozy — another test (d*mn, I miss my CGM!) and the meter said 36. Next hour or so was spent drinking juice, eating graham crackers with PB, testing and more testing, and crossing fingers that I wouldn’t overdo it and end up high again. Fun times.

So, how am I doing with my diabetes? The Bear spent most of the afternoon over 200 but was gloriously around 140 all night. How is she doing with her diabetes? Are things settled? Good thing our insulin pumps take care of everything. We spent a lot of time trying to get her nervous after-school program leaders to feel more comfortable with the Bear needing to test and helping her figure out carbs for whatever snack they were making and I found out later that she just says she doesn’t want snack. Since she is always hungry after school, I can only conclude that the Bear doesn’t want to deal with diabetes stuff at this activity that she otherwise loves. The leaders are obviously relieved. They are wonderful, caring people who offer an amazing experience for kids. Still, it bugs me. On our way home from being out the other night, I was saying to the BHE how much I appreciate this particular babysitter – no drama, never any problems, doesn’t get stressed out about food, carbs, etc. After we are home & babysitter has left I hunt everywhere for the Bear’s CGM receiver. Finally, with a flashlight, I find it under a pile of stuff in her bed. It reads 58, arrow down, needs calibration. WTF? Treat the low, make the calibration, then look back at bg records — test at bedtime was 80. So, what were the arrows on the CGM at 80? And our instructions say that if she is under 100 and arrows are stable or dropping at bedtime, she needs some carbs. At the very least, you need to keep an eye on that CGM to see what’s happening. So, did I undersell the potential danger to this babysitter while trying to keep her from being too nervous or protective?? Or, have things been relatively stable when she has been at our house and she’s gotten a little complacent? Or just forgot this one time to keep an eye on the CGM?

So, are things stable “at this point?” No. And they never will be. But that doesn’t make it a bad life and it doesn’t mean we are doing it wrong. It just means that when you ask that question, I feel judged Anger-meme(whether by you or myself) and overwhelmed that there is no possible way for me to explain the contradictory things that happen when someone is living with T1, or the constant thinking that it takes even to manage instability that we can live with.

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Milestones

I posted on FB today: “These days, the Bear is doing all kinds of things I don’t know how to do or am not good at. Being a parent is great in some of the strangest ways…” It’s been fun reading some of my friends’ comments — it’s the ways in which our kids exceed us that are so surprising and wonderful. The Bear has been drawing/writing comic books and designing things (turtle, fuzzy dice) that she wants to sew. She thinks these things up and then goes ahead and does them. She certainly hasn’t observed the BHE or I sewing things, or even writing much lately. As parents we take care of the original creation (or at least our bodies do), but after that, it’s all them.

What I didn’t mention on FB* are the diabetes-related things she has started doing. She’s been getting her site changes ready and has gone from needing/wanting help at every step to hardly even asking for confirmation that it’s all right. She’s also been talking through how she’s feeling when she feels low. Today she told me that even though she hadn’t tested, she was 69 and dropping (oh wait, now 63 and dropping) on her CGM receiver and could FEEL that she was definitely low. She drank a juicebox (15g carbs) and after a minute said, “I just feel like I have to have some glucose tablets too. The juice isn’t enough.” We had a brief chat ab0ut how some lows make you feel like you need more and more (juice, glucose tablets, all the carbs). She said, a little amazed, “you know how I feel,” and I told her about the times I do that (and another juice, and a graham cracker, and a granola bar, and a few spoonfuls of peanut butter…) and then end up with high bg afterwards and not feeling very good. Also that sometimes you need what you need in the moment and it’s ok to correct later. She decided to have just 2 glucose tablets after the juicebox and see how she was feeling at the end of her tv show (about 18 minutes).

These are all things I learned as an adult since I wasn’t even diagnosed with T1 until I was 29 years old. She is only 8 and on the verge of so many steps forward in her own care for her chronic illness. I wish this was a way in which I didn’t need to see her grow, but since it is, I’m proud to see (and sometimes share) what an amazing learner and doer our daughter is.

*Not that I couldn’t mention it on FB – but for many people not living with a chronic condition, illness baggage gets in the way. 

Posted in Living with Diabetes, Uncategorized | 1 Comment

2015 in review

I am definitely a lapsed blogger:) And, pretty bad at keeping up with e-mail too since I just opened this post from WordPress about 2015 in my blog world. I’d like to post about the CGM vacation I’m on, but too tired tonight, so sharing these stats instead. Hoping to get back to the blog more regularly at some point, but also cutting myself some slack.

The WordPress.com stats helper monkeys prepared a 2015 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 650 times in 2015. If it were a cable car, it would take about 11 trips to carry that many people.

Click here to see the complete report.

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Intentions (not resolutions)

I posted on Twitter on Friday, “I have no #diabetes resolutions.” As usual with tweets, there was a lot more going on in my mind beyond those few typed characters. It’s one of the things I like about Twitter… glimpses. It’s not that there aren’t improvements to be made in either my own or our daughter’s care — in fact, there are many. But, one of the reasons there are so many places for improvement is the low-level burnout I’ve been feeling for a few months and setting resolutions isn’t the kind of thing that usually helps me with burnout. Instead, I just feel a lot more self-critical judgment and retreat even more. So, why not give myself a break and say “no diabetes resolutions” this year?

I’m reading a book I got for Christmas that was recommended to me by a runner friend (Mile Markers: the 26.2 most important reasons why women run, by Kristin Armstrong), and I just finished the chapter called “Purpose.” One of the sections references setting “intentions” – very common in many yoga classes. Similarly to the author, I found this practice to be very powerful when I was regularly doing yoga. Some of the examples Armstrong gives are “peace, openness of heart, patience with myself and others, surrender, creativity, lightness, freedom, authenticity, forgiveness, etc.” You try to hold that intention through your practice and then check back in with that intention at the end of class. Armstrong then talks about incorporating the idea into other areas of her life: “I try to set an intention before I run, work out, write, meet up with a friend, make a speech, eat a meal, discipline my children, state my opinion, or say yes or no to a request.” Later, checking back in with the intention allows her to regroup, reset, be sure she is still on the path she intended.

This got me thinking about diabetes care – I may not want to set a resolution that feels like setting myself up for failure (told ya… burnout), but that doesn’t mean that I don’t want to improve some things. What are my intentions towards my diabetes management? Towards our daughter’s? Intentions don’t seem to require perfection or absolute adherence, or even suggest that would be possible.

Several twitter friends mentioned that they too avoid any far-reaching diabetes resolutions, choosing instead to make an effort to do some “small” things better or more often. I like this idea but intentions seem to also include some reasons, or goals, or purpose (I see what you did there Kristin Armstrong!) that might help me remember why those “small” things are important to me.

No deep thinking yet as to what intentions I want to set in managing diabetes. And, like in a yoga practice, it makes sense to set intentions for small time periods, so I expect that any that I start off with will change depending on the week, day, situation. To steal one from the book, patience with myself and others would probably be a really good place to start. For tomorrow, my intention is going to be to give diabetes some attention. For the next two weeks, my intention is to record more information with the ultimate intention of uploading data and reviewing current trends. Maybe that’s still resolutiony… but, it’s something.

Posted in Balance, Books, Burnout, Living with Diabetes | 1 Comment

Pat on the Back

Usually, my relationship with my diabetes and self-care is a rocky one. I tend to focus on the times that I don’t feel well (highs, lows), the numbers that feel like failures, the frustrations of unpredictability and feelings of body betrayal & lack of control. Some of that is a result of my barely-beneath-the-surface perfectionism and just human nature. When things are going well, we hardly notice. When something goes wrong – whoa!

someecards-mind

Change “men” to “people w/o diabetes” and “woman’s” to “PWD’s”

Yesterday I had a regular appointment at my endocrinology office. It’s a fairly new office for me; yesterday was only my third appointment at this practice. I ‘ve seen the endo once and the NP twice. I’m happy with the NP – and I especially noticed yesterday how good she is at reading the download reports from the Omnipod & Dexcom. I can’t quite put my finger on it, but she manages to balance out the big picture and fine detail views so that patterns are easier to see and think about. When I do downloads at home (not as often as I “should”) I get mired in irritation over how many highs I see, ignore the lows, and generally go straight to my own biases. I still may work on a pattern or two if I see them, but I always end up feeling badly.

The first time I saw the NP, we made a lot of changes. I was very skeptical but had committed before the appointment to try at least some suggestions. I had about 8 different basal settings in the 24-hour period and 5 correction factors (sensitivity). We cut the basal settings back to 3 and correction back to 2.  I fully expected to switch back after a couple of weeks, believing that my micromanaging was necessary. I was really wrong.

fig1Yesterday (and yes, some “good” numbers & results are coming up!) my downloads showed that I was in range 78% of the time. That’s seventy-eight per-cent… whaaat?? Unheard of. And, lows (below 70) were only 8%. And, lows under 55 were only 1%. My A1c (and I almost never share this number) was 6.4. That’s .1 higher than last time but last time I was in the low range about 25% of the time. I was ready to think that maybe they got my downloads mixed up with someone else’s:)

But, thinking about the past 3 months, I have been feeling better. I’m exercising regularly (yay running!), eating sensibly (foods & portions), using my CGM responsibly (testing before treating, not jumping too quickly on highs or up arrows), and cutting myself some slack rather than always playing the blame game. So maybe those really are my results.

We went over the daily downloads for patterns and only found one that looks like slightly too much dinner mealtime insulin. We changed that I:C ratio by 1 which now gives me only two I:C ratios. For once, my settings are pretty close to the calculations she always does to see what is “suggested” based on my total daily dose, etc. When we looked at the other things that have been frustrating me — having the same breakfast every day but getting different postprandial results and the variability in post-exercise blood sugars — there just weren’t any patterns. Of course, that’s what drives me crazy, but she framed in a different light that was very helpful — obviously there are factors there that aren’t in our control. I’m using the CGM well to catch any excursions before they get completely out of hand and that’s working overall. Not my fault?? What a concept.

So, normally I don’t take any time to think about what I might be doing right, or take any credit for maintaining or improving my health. This time, I just want to. It’s not my diaversary, but it’s a good time to pat myself on the back and say “good job.” I texted the BHE after the appointment to say “If the endo had gold stars, I would have gotten one.” Really though, I need to give that gold star to myself.

Disclaimery Thing: I cringe to post actual numbers. I don’t want to be judged in any way for them — And judgements that come from people when they think your numbers are “too good” or that you are making other people feel badly, or that you have “no right” to complain when your numbers are better than someone else’s are the worst for me. I just want to say that everyone’s experience with diabetes is individual and I haven’t posted anything here as a way to compare to anyone else — only myself. 

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Diabetes Day Camp, Take 1

It has been an eventful week. Of course, “eventful” is useful in the same way as “interesting,” — it can represent many different shades of good, bad, and in-between.

The Bear had her first week of diabetes camp. She’s only 7, so it was day camp. She went to a one-day event at this camp last fall and really liked it. When I saw that they had summer day camp (1 week), I was pretty excited but we were waiting to hear whether she got into another camp (that runs by a lottery system) that could have been the same week so we didn’t register for diabetes camp right away. In fact, I didn’t even remember it until the Friday before the camp was set to start:) I called, they made room, and come Monday she was off to Camp Hot Shot.
onlycoolkids

The awesome: Everything I have read about any diabetes camp applied here — huge peace of mind knowing that most of the counselors & some of the organizers have T1 and/or have a lot of experience with managing T1. Even though this camp did a lot of the same things as the rec camp she got sick of last summer, she had fun doing those things here and I think the counselors & other kids were the biggest reason. She didn’t have any comments on what it was like being in a group where everyone was testing bg and taking insulin (rather than being the only one doing those things, like at school), but I’m sure it was an incredibly normalizing experience for her. She has already said she wants to go again next year and someday she wants to be a counselor. The pool at this facility is a non-swimmer’s dream come true with buckets that randomly drop water, and a waterfall-like thing.

The same-old-same-old: The camp had a “veggie challenge” on one of the days. Each camper was assigned a vegetable and had to come up with a recipe that they could make and bring in for everyone to try. The camper who tried the most things was recognizeveggiesd and the campers voted on which recipe was their favorite. Ahead of time, I told the camp director that the challenge would be getting the Bear to try anything. She laughed and said that did sometimes happen but often parents are flabbergasted at what their kid did try. Well, color me unflabbergasted. Our kid tried exactly zero veggies. But, she did say on the way home that there were two things that she kind of wished she had tried, so maybe there’s hope. We’ll be buying some fresh green beans to be dipped into ranch dressing (so creative! so innovative!) and looking for a good muffin recipe using butternut squash (please comment if you know of one!).
The not-so-good: and this has nothing to do with the camp per se. After a very long day at the beach on Thursday (well, that has to do with the camp. I think 5-6 hours in the sun on the beach is a bit much, especially for a 7-year-old), our Bear came home exhausted, over-sunned (though not burnt, thanks to good suncreen), and with a headache. We chalked it up to the long, sunny day. She slept most of the evening, didn’t eat any dinner, and stayed mostly in the mid-200s. Changed her pump site a bit early and at 2 a.m. she had come down to 94 and when she woke up she was 106. She was still tired though, and more emotional than usual. At first she didn’t want any breakfast either. When she tested at 260-ish before we left for camp, we checked for ketones which came back at 0.8. She has never had ketones, not even at diagnosis since we caught it so early. She still wanted to go to camp though and ate a couple of pieces of toast so we covered for that & by the time we got to camp she was coming down. We let them know what was happening & knew we would be back in only 3 hours for the family lunch & games, etc. so it wasn’t a full day. When we got back they told us she had been running in the high 200s & around 300 & corrections didn’t seem to be doing much. She was still testing at small ketones as well. As soon as we sat down she snuggled up to the BHE. Didn’t want to eat or do anything else, but also didn’t want to leave. We ate our lunches (she didn’t have anything) and hung around for a bit before she finally gave up & said she was ready to go home. Long story, long: she slept on the way home, vomited at home, tested at 0.5, 0.4, 0.8 ketones but with bgs at 106, 114. No more vomiting after an anti-nausea dose, but lots of sleeping and refusing to eat or drink anything. Then the usual sick day procedures, temp around 101, insulin via syringe just in case, talked to the CDE on call, blah, blah. Real-person sick.

Crummy way to end a great week.

By the time I am writing this though, it is as if someone flipped a switch. She has perked up, ate a bit, had a popsicle, and is clearly feeling some better. We didn’t have the afternoon we were expecting, but it could have been worse. Tomorrow is a 5K in the morning for me, & probably a bike ride for the BHE and the Bear if she is up for it. Then in the afternoon maybe a longer bike ride for the 3 of us. Back to normal.

We are so lucky. Myself & the Bear get sick very rarely. We made it through the whole winter without anything more severe than the sniffles. The only downside to that is when one of us does get sick, I feel totally inexperienced. There’s no other times to compare it to or to help know what to expect.

I hope that over the year she will remember diabetes camp for all the fun she had and not for how it ended. Someday, I hope we’ll be dropping her off for sleepaway diabetes camp and for that to happen, these earlier experiences need to be positive. I think we’re good, but I wouldn’t be a mom if I didn’t worry a little.:)

momworry

 

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