News Flash: Diabetes is Making Me Crazy

I know, not really a news flash! But, it is part of a larger story that is about a lesson I have to keep relearning.

Sometimes, when a pattern of bg readings starts to emerge – whether for myself or the Bear – I start to adapt to it by lowballing carb counting, overriding the bolus suggestions, or overusing temp basals rather than figuring out what is going on and changing pump settings accordingly.

We’ve had a few nights where the Bear is lowish or has CGM arrows down after dinner, around bedtime. So, she will have a snack and we won’t cover the carbs, or only cover part of the carbs, or I’ll set a lower temp basal for an hour or so. Then at 10 p.m. when we test her before we go to sleep, she’s in the mid to high 200s and I grumble and mutter under my breath, set one or two alarms for overnight, and start the whole process over again the next day.

When I get sleep-deprived enough, I start forcing myself to try to do some real testing — cover carbs by the book, treat lows, log what’s happening, with the intention of getting to those settings changes. At which point, the pattern goes away. Is there for one night, but not the next. Or there is so much snacking or bolusing that it is next to impossible to test the existing settings.

[side note: this is a pet peeve of mine with our CDEs… they are always asking me about basal testing, or saying it would be “nice” to have a few nights of testing where she went to bed in range with no food or insulin on board. I agree, that would be “nice” but it seems like those nights come along about once every two months so it’s pretty unlikely for it to happen in the 7 days before our appointment.]

So this is where we’ve been the past week or so. And with a couple of nights of one of us out at a meeting or something we had nights where we went back to under carb counting, etc. just to get through. I could upload her data but of course it won’t show all the work-arounds we’ve been doing.

So, Diabetes, you are driving me crazy. I know that I need to change the Bear’s I:C ratio at dinner, or for evening, or her basal at one of those times — but I don’t know which needs to be changed, or by how much. I’m tired from getting up twice each night and still no closer to having good numbers.

Posted in Carb Counting, Living with Diabetes, Pump Management | Leave a comment

Pleased To Make Your Acquaintance

Day 7: The very first inspiration for Diabetes Blog Week was to help connect our blogging community, and that continues to be the most important reason it’s held every year.  So let’s help foster and continue those connections as we wrap up another Dblog Week.  Share a link to a new blog you’ve found or a new friend you’ve made.  Or pick a random blog off of the Participant’s List, check it out and share it with us.  Let’s take some time today to make new friends.

I’m still catching up on posts for Day 5 and Day 6 so I’m sure I still have new friends to meet and new favorite posts to find…

I have added some blogs to my Feedly list (up over 65 D blogs on there now!):

  • Celine at Running on Carbs had a great re-post for yesterday’s “favorites & motivation” topic. I’m excited to find a diabetes + running blog given my new-found interest in running.
  • To continue with the running theme I loved the “I Can” post at Running without Sugar. It was great to read how supportive and encouraging her doc was at diagnosis – and then all that she went on to achieve (like marathons!).
  • Pretty much every day I was impressed with the writing on I am Type One. Day 4 she tackled the topic of Changes and her recent decision to try an insulin pump. She started off the week talking about how she doesn’t usually share her feelings or personal thoughts but I thought every post did a great job of expressing herself.

Things that I definitely felt so many of us were connected on:

  • Cleaning Out – we all have a closet, drawers, etc. that are just filled with so much diabetes supplies! I’m glad it isn’t just me who needs to do a purge :)
  • Keep It To Yourself – I’m also not alone in finding that sharing specific numbers (like A1c) is tricky. It was interesting to read the reasons various people have for arriving at the same conclusion.
  • DOC Love & Support – Throughout all the topics, people kept saying how their lives had changed for the better once they discovered the DOC. The comments on blogs, RTs on Twitter… all equal the kind of support we all need.

Thank you to everyone who blogged this week and shared your feelings, experiences, wisdom, humor, and support! I’m grateful to “know” you all :)

Posted in Blogging About Blogging, DOC | 3 Comments

I Wish You Hope (D Blog Week day 6)


Day 6 Topic: If you have been blogging for a while, what is your favorite sentence or blogpost that you have ever written? Is it diabetes related or just life related? If you are a new blogger and don’t have a favorite yet, tell us what motivated you to start sharing your story by writing a blog? (Thank you Laddie of Test Guess and Go for suggesting this topic.)

I have been blogging for a while but don’t post enough for it to feel like a long time. I was curious about what I would do for this topic. I’ve written more than once about my motivations for starting a blog and it’s hard to think about having a favorite post or sentence (I’m my own worst critic). The topic is a good excuse to read back through a couple of years of posts though, and I did find something in a post that I decided was worth restating.

It doesn’t even go all that far back — just to January of this year. We attended a brief talk by Ed Damiano about the Bionic Pancreas. One thing I said in that post was:
I still don’t think I can believe that it might be available in the fall of 2017 (when Damiano’s son is due to go off to college – his goal) – but it’s hard not to believe that it will be available. That is more than I have hoped for a long time.

It’s hard to lose hope. I find myself cringing whenever people try to tell me about some amazing new discovery they have heard about. They are excited to tell me something positive and want so much to be the bearer of good news. And I’m lucky, it’s never about cinnamon curing diabetes or how Halle Berry weaned herself off of insulin. It’s always a report they read or heard about encapsulation or a cure in mice or the artificial pancreas or islet cell transplantation… What is discouraging is how discouraged I feel in the face of all of that hope. Truly I think the research that is happening is some of the most exciting ever – people are making huge strides in understanding so much about diabetes and that leads to new and innovative approaches to both managing it and someday finding a cure. I get that. But, despite how promising a report makes an advance sound, it isn’t going to make any difference in my daily life tomorrow or next week or even next year. So this person who is only telling me about it because they care wonders why I’m not happier at the news. They don’t understand that I was told in 2001 that there would be a cure in 5 years and other PWDs were told that 20 and 30 and 40 and 50 years ago. They don’t understand just how far away we are from getting that mouse cure to work in humans (if ever). They don’t understand how hard it is to get excited about “someday, maybe” ideas when every day we are watching our 7-year-old go through the literal highs and lows, and we worry about her living through the night, and I know that every day raises my risk just a little bit more for serious complications. Every day is filled with carb counting (or SWAGing), finger pricks, and getting things wrong all the time – things that when you get them wrong make you feel lousy at best and could land you in the hospital (or worse) at worst.

I really don’t like being negative. I usually say “yes, the science has come so far,” or “it’s exciting to have so much research going on.” And if someone asks more questions or pushes for a more enthusiastic response then I might try to explain a bit about how long such things take, how much we still don’t know, how expensive new treatments can be even if they do make it… I doubt it helps people be less disappointed that I’m not more excited, or (perhaps even more commonly) that I already know about this “new” advance they just heard about.

Anyway, enough ranting about that. That is just one of the big places in my life where my hope, now pretty ragged, gets highlighted for how many holes it has in it these days. I can’t get my hopes up to a high level because the waiting and disappointment is just too hard. For my own sanity I need to try to stay interested and curious without actually pinning my hopes on any particular “cure.”

But, Ed Damiano’s presentation was something different*. As I wrote in my post:
I had tears in my eyes during parts of his talk. I felt that scary feeling of daring to hope for something.

But, it is the paragraph at the end of the post that most made me want to share again. My hope that all of us touched by T1 Diabetes get moments when we can feel hopeful. Here’s that paragraph. I wish you hope.

I hope that every person with or affected by T1 gets to experience something this year that makes them feel hopeful about better days ahead. Whether it is a scientist talking about advances, a new friend who gets it and makes them feel less alone, or a no-hitter on their CGM — we all need to feel better about the future.

*If you don’t know about the Bionic Pancreas project, or want to learn more, check out the web site or this video. And if you are a person who has the means to donate to a cause and this is important to you, please consider donating to the project.

Posted in Blogging About Blogging, Diabetes Tech, Hope, Living with Diabetes, Research | Tagged , | Leave a comment

Yum! Friday Food (DBlogWeek Day 5)


Taking a cue from Adam Brown’s recent post, write a post documenting what you eat in a day! Feel free to add links to recommended recipes/shops/whatever. Make it an ideal day or a come-as-you-are day – no judgments either way. (Thank you, Katy of Bigfoot Child Have Diabetes for this topic.)

Just to make what is sure to be a long post even longer ;) I’ll blog my Friday food in blue and my daughter’s (also T1) in green :)

Pre-Breakfast:
Some mornings my food begins before the most important meal of the day. I’ve been having frequent low bgs between 2 a.m. and 6 a.m. so it’s not unusual for my food to begin with a juicebox, glucose tabs, or a granola bar. Not today though — made it to wake up at #bgnow 121 (thanks to recent endo appt & some changes hopefully).

Breakfast:
During the week it is the same every day (though my post bgs are not the same* — why???): 1 piece of toast (Arnold bread; I like the nutty almond the best but the last few weeks it has been Oat Nut), 20g CHO, with butter (mmmmmmmm… butter). Since my endo appointment I am trying prebolusing by at least 15 minutes (phone timer!) before eating. I should have taken a toast pic but didn’t think of it – will try to do better at lunch.

If the Bear could eat cookies or candy for breakfast, she would. She often has dry cereal (some kinds might as well be cookies) but today we were out so she had a scrambled egg (!). She is a terrible eater so I nearly fell over when she requested an egg. She ate the whole thing too. Along with ketchup. Then had 8 “club” crackers (18g CHO). She will next eat at snack at school around 10 a.m.

*note: at endo appt we identified that though my 1-2 hour pp tests were wildly different after the toast, my 3-4 hour numbers were strikingly the same –> low. I really hate hyperglycemia so I had my I:C ratio for breakfast set more aggressive than I probably need trying to combat the spike in bgs — so, we backed off on that and are trying the pre-bolus idea instead. I could also try either slower carbs or more protein in the morning, but this is easy & habitual. 

Snack:
I had a blueberry scone from my local coffee shop. I bolused at 10:49 a.m. (called it 60g CHO, but who knows) waited 20 minutes and then ate it. It. was. delicious. Now, it is 12:36 (almost 2 hours) and my CGM has an arrow diagonally up and reads 204. Wait, I just checked again and it reads 218 with one arrow straight up. The first two hours on the graph are in range and steady. I’m sure I should know what this tells me about scones but it probably just tells me I can’t eat big scones and expect to maintain in-range, stable bgs afterwards. Or that my SWAG for the CHO in the scone was bogus.

Sent the Bear to school with some goldfish crackers (10g CHO), a few sugar snap peas (0g CHO since she will only eat the peas out of the pods, and only maybe), and a fruit roll up (12g CHO). Not the healthiest or unhealthiest snack ever. She was having grapes for a while but this week told me she was tired of grapes. Her snack is important since the first graders have the latest lunch — not until 1:05 p.m.! She also has baby bell cheeses in the classroom in case she has days where she is just starving.

Lunch:
Amy’s Spinach Pizza in a Pocket (37g CHO). Pre-lunch bg = 267 (d*mn scone) at 1:45 p.m., bolused/corrected & now waiting 20 minutes before eating. As I have been doing for the past few days, I went through the process of heating up my lunch before remembering to pre-bolus. So I will probably have to re-heat it once the timer goes off. Yup, I really wish eating could just be eating.20150515_135246
The Bear brought a pepperoni pizza lunchable (30g CHO, mostly in the crusts), a small bag of cheetos (13g CHO), and 2 oreos (18g). [OMG, I am a terrible parent… these are the kinds of lunches that make me feel guilty and terrible. But, I also feel guilty and terrible when she comes home with an untouched lunch – literally, untouched – for days or a week in a row.] Usually I try to make one of the “sides” something remotely healthy and about 60% of the time the healthy thing comes back home with her. I know that everyone says to just keep giving them what you want them to eat and eventually they will be hungry enough to eat it, but I can’t deal with the morning battles so here we are. Some weeks I only let her have a lunchable on 2 days and that plus the one healthy thing is my best compromise. 

Afternoon snack:
Not really a thing. But since my CGM was 103 and dropping around 4:30 I ate a half a slice of banana bread that a co-worker made. I didn’t test and didn’t bolus so I don’t know exactly what time it was. And I didn’t pre-bolus. 

Got a text from the babysitter at 5:30 p.m. that the Bear had eaten a Clif Bar (44g CHO – whaat?!) and a juice box (21g) so she was covering her for 65g CHO. That’s a lot all at once. I need to give the babysitter more guidelines as to what is ok for a snack but haven’t gotten my thoughts together on that yet. It is so variable depending on activity level and whatnot. And there is just the whole complication of setting limits around food [see dblogweek day 4]. When I got home (I work late on Fridays), the hubby said that the Bear was around 55 and CGM had double arrows down. Great. So she had 1 glucose tablet and a juice box (19g CHO total).

Dinner:
Friday is pizza night. We tried a new place tonight, so I couldn’t count on past experience completely. Plus I forgot to pre-bolus so once food was on the table I had to wait – set the timer for 20 minutes. The poor Bear was feeling lousy from the low anyway so we snuggled while her bg came up. But for some reason, the timer on my phone kept resetting so I’m not sure how long I actually waited before eating. Just as I was finishing 1 piece of pizza and some salad, CGM started alarming low. blah, blah, blah. Still low now and did an extended bolus hoping to catch the later rise. Pizza is stupid.

The Bear ate about 1/4 of a large slice of pizza before deciding she didn’t want pizza. Ended up with a PB + Nutella sandwich. More health food. A glass of milk topped that off and she’ll be deciding on some dessert next. 

I know that Friday isn’t officially over but I’m wiped out from all this food talk & thinking :) I can’t say that today was a very good example of my usually healthy diet — Mostly I cook veggies at home, take leftovers for lunch, etc. But, Fridays are a long day for me after a long week (and I’m working tomorrow too!) and … excuses, excuses :) I’m looking forward to reading what everyone else had to eat today and maybe pick up some new ideas for snacks and meals. You can read all of the #DBlogWeek Day 5 posts here.

Posted in Endocrinologist, food, Living with Diabetes, Pump Management | 1 Comment

Ch-ch-ch-changes (or, my dysfunctional relationship with food)

Day 4: Today let’s talk about changes, in one of two ways.  Either tell us what you’d most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing.  OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes.  Were they expected or did they surprise you?

If I could change one thing about Diabetes it would be to make it history.

But, if that option was off the table, there are lots of other things I would change. I would make it not apply overnight, be less relentless, have more accurate tools available, not have so much stigma and guilt and shame attached.

Today, I especially I could change how diabetes disrupts a healthy relationship with food. I actually eat healthier since my diagnosis (at age 29) and I’m sure I am much more aware of how what I eat affects my body. Would I have come to better habits anyway, even if I hadn’t been diagnosed with T1? Maybe. But the motivation to feel my best and to stay healthy for my family is amplified because of diabetes.

Eating healthy foods doesn’t mean that I have a healthy relationship with food however. The constant vigilance, the analysis of every meal, snack, quick bite, and the judgy feedback of “testing” blood glucose before eating, after eating, when thinking about maybe eating all create a dysfunctional relationship with food. I resent all of the prep I have to do before I eat (weighing, carb counting, worrying about pre-meal bg, pre-bolus timing, exercise timing) — there have been many times that those I am eating “with” are finishing their meal as I’m taking my first few bites. Sometimes that even makes me resent those I’m eating with, despite how unreasonable those feelings are. I dislike any event that is mainly appetizers or grazing over long periods of time. For years I lived by a rule that I wouldn’t eat anything that was an appetizer. If that’s all there was, I just didn’t eat. This made me super popular at parties! I feel guilty and self-critical when I eat something less healthy that makes my blood glucose high for hours afterwards even if I have tried all the insulin/pump tricks I know. When I daydream about the bionic pancreas the thing that is most appealing is the idea of food just being food – not a math problem or an emotional minefield. Though honestly, I’m not sure I can remember what that would feel like.

Multiply the food dysfunction by 2 (feels like 100) when it comes to thinking about my daughter’s relationship with food. She was diagnosed at 3 so I have always done all the thinking about what she’s eating. Now she’s 7 so she’s starting to make more independent choices. I feel a lot of tension around not wanting to create a dysfunctional food relationship for her – don’t want to say “you can’t eat that because you have diabetes,” or making her feel even more different from her peers when other parents ask if she can have cake at a birthday party, or needing to make a big deal over food before she goes on a play date. But, she needs to understand that healthy eating is important for everyone and even more important for her because of her diabetes. The food choices she makes (or that we make for her) have an immediate impact on how she feels and on what activities she can do well as well as on her long-term health and avoiding complications. I feel guilty and sad when I tell her she can’t have something or has to wait because of her diabetes (even if I would have said no anyway for health reasons) and I feel guilty and like a bad parent when I say yes to something that isn’t the best choice.

It’s never just about eating something. I hate to deal with it myself and I hate even more that it complicates her life as well. I love the idea of making diabetes fit your life instead of making your life fit diabetes and not letting diabetes keep you from doing anything you want and as much as possible I follow those principles in our lives. But, it doesn’t change the reality that staying healthy requires thoughtful awareness of managing diabetes and food plays a major role. So today, that’s what I wish I could change.

Posted in Carb Counting, food, Living with Diabetes, Others caring for your T1 kid | 5 Comments

Spring Cleaning (diabetes style)

Day 3: Yesterday we kept stuff in, so today let’s clear stuff out.  What is in your diabetic closet that needs to be cleaned out?  This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to.  Why are you keeping it and why do you need to get rid of it?  (Thank you Rick of RA Diabetes for this topic suggestion.)

My diabetes closet looks pretty neat when you first look in but if you move a few things out of the way, you see all the junk I have hidden in the back. Physically I need to get rid of a bin of sites with short tubing that my daughter has outgrown (and are now expired – even though I don’t really understand how such a thing can expire), test strips that are 2 years out of date, and so many empty boxes from all the various meters, pumps, pods, etc. we’ve received over the years. I keep all those d*mn boxes because of years of training that I have to have the “original packaging” just in case I need to return something — this despite the fact that the diabetes companies always send packaging when I need to return something. I have the other stuff because I saved it “just in case” and then forgot it was even there.

I could leave it there, but of course there is also some non-physical stuff cluttering up my diabetes closet. The thing I could most stand to get rid of is my perfectionist/control freak leanings that make me feel that low blood sugar readings are “better” than high readings — leading to hypoglycemic unawareness and some unhealthy decisions. It’s something I’ve tried to “clean” out before, but it is rooted in my personality, my diagnosis story, and can’t be gotten rid of easily. I had an appointment today with my endo and I’ve gotten my percentage of lows according to CGM down to 14% from about 30% — hooray! Of course, being below 70 14% of the time is still not great. Especially when I’m below 50 about 6% of the time.

Even though this is only my third time in this endo office, they already know how resistant I can get to backing off of my “control.” All changes to settings that will be less aggressive are introduced carefully, with care taken to show me just how small the changes really are. :D Maybe because this is a new office for me, I can see that their approach signifies how inflexible I have become about this. I keep saying that I know I need to reduce the number of lows that I have, but I resist most suggestions of ways to do that.

Today, at the appointment, I think I surprised myself and the doc by accepting her suggestions and even making one of my own. My daytime insulin to carb ratios have backed off and I lowered my basal rate from 6:30 pm to midnight. Changed my correction factor (Omnipod speak… I think it is called “sensitivity” with some other pumps) to be less aggressive as well. That many changes, all in the same direction, is unheard of in my history. But, I took a deep breath and said, “I can live with that.” I will need to do a better job of pre-bolusing earlier before eating and pulling data off of devices to be sure I’m not overracting to high numbers that aren’t really a pattern or a result of the changes. We’ll see how it goes. Wish me luck.

[my other posts on hypoglycemic unawareness]

 

Posted in CGM, Endocrinologist, Hypoglycemia Unawareness, Living with Diabetes | 2 Comments

Your Story, Your Way

Hello Diabetes Blog Week!

Day 2: Keep It To Yourself – Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?  (This is not an attempt to get you out of your comfort zone.  There is no need to elaborate or tell personal stories related to these aspects.  Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.) (Thank you Scott E of Rolling in the D for this topic.)

I think really hard before I post anything about my daughter’s diabetes. One of the reasons I started blogging was because I wasn’t reading much from people who had T1 who were also parenting T1 kids so I always intended to discuss her diabetes along with my own online. But I also don’t want to tell more than she will someday want told. I’m trying to stay somewhere in the middle – talking about my own experience which includes information about being a parent of a T1D kid. I tend to describe situations from my perspective only and not try to put words in her mouth.

So, I won’t be saying that she hates diabetes, or hates feeling different from other kids at school, or that she feels sad or lonely or angry or anything. But, I do sometimes write that she has said that she hates diabetes, or that she wishes she didn’t have to test before she eats when her friends don’t have to. For me, the story is about how I feel when she says things like that, how it might trigger my emotions about my own diabetes, the guilt I will always feel for the genetic link between our diabetes, and how a parent can try to help a child work through tough times dealing with a chronic illness. I hope that using her own statements as part of my experience isn’t a betrayal of her rights to tell her own story.

There are all kinds of other things I don’t tend to write or talk about when it comes to my own diabetes but not because of any hard and fast rules. I don’t write about A1c specifics in general though I would if it connected to a larger scientific issue I was thinking about (like when the pediatric standards recently changed). I’m not connected to people on MyFitnessPal because I don’t want to share my food failures with anyone else (bad enough that I know about them!) and I’ve had enough discussions about food choices to last me a lifetime. I might talk about food in the blog though, or on twitter (yay, #dsma chat!), on my own terms. I would rather not talk/write about the ways in which people in my life sometimes disappoint me when it comes to diabetes – that’s not fair and it would never be outweighed by all the ways people surprise and amaze me that don’t get the same kind of attention even though it is the more common occurrence.

I’m glad that the things I don’t talk about now are different than the things I didn’t used to talk about. Today, I make those choices based on the feelings and rights of those I love, the effects I do or don’t want to have on others, and what feels right and respectful to (and of) myself. There was a time when most of what I didn’t talk about had to do with shame about the feelings, the choices, and even just about having diabetes. It pains me when I read others’ tweets and blog posts and recognize those feelings of shame in what they do and don’t say. The #DOC is a place where it is all ok. I hope that we can all remember that no matter what stories people are sharing, it’s important for us to comment and let them know they aren’t alone and every story is valid.

Tell your story in your way and know that we’re out here listening.

Posted in Balance, Blogging About Blogging | Leave a comment