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.
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.

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.

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. 😀 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]

 

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.

I Can Do It, Can You?*

Hello diabetes blog week! [get info about Diabetes Blog Week]

For Day One, we have this topic: In the UK, there was a diabetes blog theme of “I can…”  that participants found wonderfully empowering.  So lets kick things off this year by looking at the positive side of our lives with diabetes.  What have you or your loved one accomplished, despite having diabetes, that you weren’t sure you could?  Or what have you done that you’ve been particularly proud of?  Or what good thing has diabetes brought into your life?  (Thank you to the anonymous person who submitted this topic suggestion.)

As a T1 and a D-parent of a T1 child, I have heard a particular comment more often than I can count: “I could never give myself/my child a shot.”

There is only one real answer to this even though I never give it… or at least not in as blunt a way as I would like to. If you/your child would die if they didn’t get that shot (and the 4-8 others you/they will need today), yes, yes you could.

I can give myself and my child shots. I can insert canulas (canuli?) under our skin for pump and CGM sites even though it hurts. I can do (and have done) these things while my child cries or screams or on my 5th sleepless night in a row.

I can do these things because it means we can both stay alive and enjoy all of the other awesome things we have and do in our lives.

I can do it and you can too.

*And title thanks to “We’ve All Got Belly Buttons“

The three “P”s

I said I would write about the three “P”s that my PCP wanted me to see for the shin splints… Orthopoedist (was supposed to be Podiatry…), Physiatry and Physical Therapy. Turned out to be an interesting triumverate. The overall upshot of all three was that the chiropractic stuff I had done (Graston, ultrasound, electrical something or other, and massage) were all appropriate and what these other docs would have included in their treatment plan. That was good news since I had been feeling like I had maybe wasted several months (and several $$) on something that would turn out to have been useless. They also all agreed that while all of those treatments were good for mitigating the severe symptoms, it would never have gotten me to a point where I could run without just re-aggravating the injury.

The Orthopoedist was the most straightforward, succinct doctor I have ever seen. He listened to my story, watched me walk around a bit, and then asked if I could touch my forearm with my thumb. I did and he asked me, “Do you have any idea why I asked you that?” I didn’t. Turns out if you can touch your thumb to your forearm it is a sign that you have loose ligaments & joints. I didn’t know that it was something that not everyone could do 🙂 So, he says, of course I have shin splints, I need orthotics, he can give me some OTC ones that, if they work, I can order directly when I need more. If the OTC ones don’t work then I’ll need custom ones but those cost $200 – $400 and insurance won’t cover them so he recommends I try the OTC ones first. Didn’t want to see me for a follow up, done and done.

The Physiatrist said basically everything the Orthopoedist said though with more personality and more explanation. He did want to follow up in 4 weeks and mentioned an experimental treatment that could be tried if orthotics & PT didn’t work – something about making my blood protein rich and then injecting it back into my shins to spur healing. Um – no.

The Physical Therapist was the most practical of the three and gave me the best explanations of anyone about what was happening in my body to cause the shin splints and what kinds of exercises and other things should be best (in addition to the orthotics!) to keep it in check. I went to see him 4 times total and now am just doing the exercises at home and keeping an eye on things.

All three agreed also that my sneakers are good — also a relief since I trust and love my running store and wanted to believe that they had done a good job fitting me.

I don’t feel like I’m cured — I still find that pain is increased if I run a full 3.2 miles at (for me) a good pace. But, I do feel much more hopeful and I am able to get out with my running group. I had been hesitant to register for any 5Ks since I wasn’t sure I would actually be able to complete one but now I’m planning to sign up for a few.

Tonight my running group was invited to speak to the new Beginner 5K group & run with them. It was amazing to celebrate what we have accomplished since we were all in our beginner group and it was such an opportunity to meet some of these folks and try to help them see where they might be in a few months. I’m so proud that I went from not being able to run for 2 minutes to running through the winter – to sticking with it even through injury and pain. When I had my couple of minutes to speak, I talked about the importance of showing up, of getting out there for every practice and to always be moving forward – the advice I was given. Sometimes diabetes is like that too – you can’t give up. It still amazes me how diabetes can help me face other things in my life and how other things can help me learn new things about living with diabetes.

See Diabetes Run – with friends!

Before I get back to the shin splint story, I want to back up a bit and talk about why I care… I’ve never been a runner. Walking has always been my exercise of choice and when I have had walking partners who were well-matched in pace & temperament, it has done well by me. I walk pretty fast (14 min. mile or a bit less – not race walking, but not bad) and would try to get in 45 minutes to an hour, so it seemed to work for cardio. I had a hard time keeping up a regular schedule when I didn’t have someone to walk with though.

In 2014, when buying new sneakers at my local (awesome!) running store, I noticed an ad for one of their spring running groups. It caught my eye but I didn’t do anything about it, not being a runner 🙂  Then in July I got an e-mail from the store & it included a list of the upcoming groups & training programs. I had had success with weight loss but still hadn’t improved my fitness level (my other goal) so I actually stopped and thought about it. Asked the BHE what he thought (he said, “go for it!”), and the next time we were downtown we stopped into the store & I registered for the Beginner 5K training group.

It started on Aug. 18 (my mom’s birthday) and I started letting go of my “not a runner” status. To my surprise, I loved the group exercise, liked stretching before we started when everyone chatted while following along with our coaches, liked running/walking with different people each time as our paces waxed & waned. The training was a modified C25K (couch to 5K) led by 3 coaches – 2 store staff & the owner – all of whom are runners. We started off the program mostly walking with a few 30 second runs thrown in and ended up running 3.1 miles – a 5K. The people in the group (more than 40 of us to start!) ranged from those who ran in college but not since, those who ran but had never done a 5K, those who had never run (me!), and I’m sure many more scenarios. We met twice/week as the group and then had “homework” assignments like doing other types of exercise, core-strengthening exercises, and some intervals (walking/running) like we were doing with the group.

At the beginning, I really couldn’t imagine running 3 miles straight. It seemed impossible! Along the way, different milestones seemed so far away but then were accomplished — run for 5 minutes? no way. Run for 15 minutes? no way. Yet, there I was, accomplishing that and more. I also wasn’t sure how different managing my diabetes would be with running than with walking. The intervals meant that the intensity of the workout was changing during the workout as well as between workouts. Thank goodness for the pump & CGM – not to mention peanut butter and bananas! I got pretty good at eating a proper sized snack ahead of time, changing basal rates a few hours ahead and during and after the sessions, and keeping a close eye on bgs after 24 hours or so. It never did get what I would call “predictable” but it seems like diabetes never does. I did gain confidence that I could handle it though – whatever diabetes decided to do for that run, I could adjust and get through it without having to stop the workout. Sometimes I was low and sometimes I was high, but I didn’t have to miss a session because of my diabetes.

Doing the 5K in October, running the whole thing, finishing, and finishing in way less time than I hoped (though I did set a silly goal of 50 minutes!) was such a good, proud feeling. And being there after the race, celebrating with the 25 or so others from our group who had also run the race, made it so much better. We all felt like we could never have achieved that goal of running over 3 miles without the support and motivation from the group.

About a dozen people from the group said that we wanted to keep running regularly after the training was over. Out of those, 8 of us have actually continued to meet and run all the way through the winter. We have run a few races together and supported each other through some injuries. My shin splints, someone’s knee surgery, plantar fascitis, hip pain, etc. I never would have stuck with running without this group of amazing women. Several of them are younger than I am, some older, and others right around my age. We do/did different things for work, come from different parts of the country, have different backgrounds and lifestyles, but we all have this sense of accomplishment and the joys we have found in running in common. These are 7 women I probably would never have met w/o the 5K group but now I can’t imagine my life without them. They are truly friends.

What a long post to convey a simple truth: I can’t let shin splints (or any other injury) make me stop running. Without running, I won’t see these friends once or twice a week, I won’t have their support and understanding, I won’t laugh with them, or walk with someone when we both are struggling, or feel motivated to get my body moving. We celebrate our times during races — if someone improves their time we get excited, if someone doesn’t, we get excited that we all finished. I’m sure many people have this kind of experience during their school years when they play on a team… I never had that as a kid so I’m learning it rather late. In this case it is definitely better late than never.

Let the Repair Begin

I know I’ve written on here about my running group (and here – one of my favorite posts ever), and also my frustration with various pains and injuries. Most recently (and longest lasting) is shin splints.

Digression: I realize now that I haven’t really written much about my running group or the pains & injuries 🙂 I guess I wrote a lot in my head. Just a quick catch-you-up: I love my running group! After our beginner 5K group did the race in Oct. 2014 – about half of the original group of 40 ran the race – some of us said we wanted to keep meeting and running. There are about 8 of us now and we have actually made it through the winter with a combination of outside & inside running. I got my knee pain resolved not long after that Oct. race but in November I started dealing with shin pain which I discovered was shin splints 😦  Went to a chiropractic place for a couple of months & while they were successful in treating the pain/symptoms I wasn’t making any progress to being able to run again.

OK. So, here we are in the present. I love this group of woman runners – I’m involved in the first exercise of my life that I actually look forward to. I’ve had a few months of struggling using the elliptical machine instead of running, running anyway and regretting it, and more recently going back to walk/run intervals (3 min run, 2 min walk). This is all better than when the shin splints were at their worst, but I still have pain and I know as soon as I try to run 3 miles again I’m going to be right back there.

So, I went to my primary care office last week & she gave me referrals to the “Three Ps: Podiatry, Physiatry, and Physical Therapy.” Basically she thinks it would be good to get an evaluation from those three & see what makes the most sense.  I’m cautiously hopeful… Glad she didn’t pull the “it hurts when you run? don’t run.”

By the time I’m wrapping up this post, I have actually seen 2 of the three – well, sort of. Not sure yet what will happen, but a plan is starting to evolve. Next time: Podiatry Orthopaedic Surgeon/Sports Medicine specialist.

So Close (or T1 still seeking T1)

I have written before about being jealous about all the Friends for Life stories. Not because of Disney World (though, fun!), and certainly not because of Orlando in July (hot!) – but definitely because of kids meeting up with other kids who wear the same devices, count carbs, deal with the same daily issues, and are still kids. Diabetes camp, ditto. I wish that the Bear knew another T1 around her age who lived close enough for the possibility of an actual friendship.

I haven’t written about our recent introduction to a newly diagnosed little girl and family who lives in our town (!), is the same age as the Bear (!), and who were seeking a mentor family (!). Like so many things relating to diabetes, I was reluctant to let myself hope that this might turn into something good. But, as we got together a few times for lunch, a movie, the Ed Damiano talk, a play date – it was turning into something more real than fantasy. The two girls immediately liked each other – lots of giggling and asking to see each other more. All of us parents had a pretty easy rapport — they seemed glad of our experience and we were all relieved to talk with others who “get” it. Some of their great habits were so helpful to hear about.

This past weekend I finally felt ready to start to believe that this could be real.

I’m sure you can guess what comes next. At a play date, mom lets us know that even though they haven’t told the kids yet, they are being transferred. I almost started to cry. Not that we’ve gotten that close, and neither have the kids — even if we spend more time together between now & summer when they move, it’s not going to be like a best friend has moved away.

It’s the hope that I’m sad for. It’s the loss of the potential.

There’s No “I” in Team: Finding the “We” in Diabetes Management

Since the initial learning curve, I have been the foremost expert on my own diabetes. I’m very comfortable looking at the data from my diabetes devices, noticing patterns (with or without a download!), making changes to my basal rates, insulin:carb ratios, and correction factors, then doing the necessary paying-attention to see how those changes are working to solve the issue.

My last endo practice has been in upheaval for several years and closed at the end of 2014. The last CDE I worked with there left the practice at least 5 years ago and so it’s been about that long since I worked with an educator. My last endo would review downloads with me and ask me if I wanted to change anything, but she was pretty laid back and happy to let me steer. In fact, her laid-back approach certainly enabled my increasing patterns of hypoglycemia. She would say, we don’t really know – for some people a blood sugar of 60 might be perfectly normal. This both sounded strange to me (never having heard any endocrinologist, CDE, or PWD say that hypoglycemia was still up for debate), and fit my inclinations to run low rather than run high (as if those are the only two choices!) so I didn’t challenge it. She just wasn’t that interested… I was managing more capably than a lot of her other patients so I must be fine.

Cut to the present. New endo practice and I saw the endocrinologist last October. I liked her approach, her attention to detail, and the time she took to ask me questions and actually listen to my answers. We looked over my downloads and made a couple of small changes. She clearly was picking up on my hesitation to do anything that would cause highs – or even make me fear that we would be causing highs – and when she suggested a change, asked me if that was something I could feel good about or if we should negotiate it.

3 months later (this week), I went to see the APRN. [I thought I was going to see a CDE, but I had misunderstood] I liked her too. Also found her to be an attentive and perceptive listener. We spent much more time looking at downloaded data and really talking about how the standard calculations compared to my actual settings, where the gap between them seemed to be lining up with patterns of low bgs, and where certain aspects of my settings (time spent in one basal rate setting for example) might actually be working against what I was trying to achieve. We ended up changing all of my insulin to carb ratios and simplifying my basal rate profile (from 8 time periods to 4 or 5). That’s a lot of changes based on a provider’s recommendations for me. It has been a long time since I trusted what a provider was suggesting as far as settings go. She also came up with a genius suggestion for the alert settings on my CGM that have been causing real problems overnight. A totally simple, sensible suggestion and one I never thought of even though what I have been doing is no less effort/work with poor results.

Long story, short: This appointment was a great reminder for me that even though I know my own diabetes/body better than anyone, that doesn’t mean that a fresh set of eyes/perspective, along with training, education, experience, can’t help me find solutions that I haven’t found on my own.

The past two days have already had fewer low bgs. And, I just changed 2 of my i:c ratios tonight because I can see that the changes we made weren’t quite enough. If the APRN had suggested the bigger change at the appointment I know I would have balked. But starting out with a small change helped me to see some success and helped me trust that we are heading in the right direction.

It’s nice to be able to say “we” in relation to diabetes management again.