Just Try It (more food adventures)

What is it that is supposed to be the “hardest job you’ll ever love?” Peace Corps, right? Well, maybe the second hardest is getting a picky selective T1D kid to try new foods. I was not expecting to love this job – not after 5 years of failing and hating every minute. But so far our new plan has been much better than I hoped.

So far, the Bear has at least tried everything we have asked her to and with a couple of decently successful weeks behind us, the BHE has jumped in with enthusiasm – helping to plan last week and really helping out with the cooking and prep. He said he is really enjoying the meals too and I feel like we are all eating healthier. We are even eating together at the table! As I said in an earlier post, this isn’t rocket science and is what most families already do or went through when their kids were a lot younger than this. But, with the Bear’s diagnosis at 3 and her unpredictable eating (and the difficulty in getting very small doses of insulin into her), I think that we were concentrating on other things and not “normal” healthy eating habits.

Anyway, I’m excited and relieved and cautiously optimistic that we are on a much better path. We are going to the Farmer’s Market on Saturday mornings and choosing some new foods to try and the Bear is helping out a bit more in the kitchen. And, she’s seeing both myself & her dad more interested in the foods we are serving and eating — pretty big stuff for us. The Bear continues to at least TRY foods we put on her plate and I think even she is surprised when foods aren’t as bad or as scary as she anticipated. Some wins:

  • Honey-glazed carrots: these are a recipe in the book I referenced before (Dinner Solved!). She likes these enough to eat what I would consider an actual serving of vegetables! And she has asked to have them again.
  • Oven sweet potato “fries”: The Bear has eaten many sweet potato fries in restaurants, but these are not deep fried and actually have some seasonings on them and the peels (hello, vitamins!), and she ate the equivalent of a whole, large sweet potato. I’m good with that.
  • “Actual Meal”: Caesar-Roasted Artic Char, roasted potatoes, green beans sauteed with mushrooms – The Bear not only tried everything, but she ate multiple bites of the fish (fish!!), lots of potatoes (ok, not too surprising), and a few green beans and one bite of a mushroom. If anyone had predicted any of that to me a month ago, I never would have believed it. I’m sure it didn’t hurt that the BHE makes the most amazing caesar dressing ever!
  • Broccoli: on the side of some shrimp scampi. She probably ate about 8 very small florets. A miracle. She also had one bite of asparagus (thank you farmer’s market!), said she didn’t really like it but then ate two more bites! The shrimp scampi was a no-go, but the veggies were worth it.
  • Tacos: We had veggie (protein crumbles, black beans, toppings) tacos tonight with spanish rice. Couldn’t get her to try even one bite of avocado, but she liked the spanish rice (with chunks of tomatoes removed) that had corn and peas (what??!!) in it and ate one taco with a bit of the taco filling in it. But, biggest surprise? Just before bed she asked if we could have taco Tuesdays in the future!

I can’t wait to go back to the dietician and be able to report some small successes! It’s still a lot of work planning meals, prepping and cooking everything, and keeping it going day after day – but it’s getting more enjoyable and it’s less work with all that the BHE has been doing to help. It’s fabulous not to feel frustrated and guilty around dinner every night.

 

Posted in food, Living with Diabetes, Uncategorized | 1 Comment

Just Between Us

I’m all for the message that kids and people with T1 Diabetes can do anything they want to. I certainly don’t want the Bear to let her diabetes stand in the way of anything and it would really push my buttons if anyone tried to tell me I couldn’t do X because I have diabetes. candoanythingWe’ve all had to deal with those situations when someone asks “can you/she eat that?” or people who are surprised to learn that we do various things despite having diabetes. On social media and blogs and elsewhere you can find proud messages that PWDs can DO ANYTHING — and I wouldn’t want it any other way.

 

But, just between us, sometimes I struggle with the fact that I can’t always do what I want to do in the way that I want to do it – because of my diabetes in that situation. This isn’t a truth I would feel good about making into a meme but it still exists for me and I think about how to talk about it with the Bear.

Tonight, I went to a track workout hosted by a local running group that I am a member of. I’ve been a member for 2 years, but haven’t participated in many of their activities because I’ve had such a great group of my own to run with. Unfortunately, my own group has dwindled and I’ve been running alone mostly and not as much as I should so it seems like a good time to try out this other group to stay motivated. There’s a big difference between the two groups though. My group got together after doing a beginner 5K class and we are all at about the same pace and fitness level with similar interests in recreational running. This other group is made up mainly of more serious and accomplished runners who run longer distances (marathoners!) and are fast and strong and interested in getting faster and stronger in a concentrated way. I don’t think they would describe themselves in exactly this way, but as someone who is a long way away from their level, this is how they appear. Everyone I’ve met in the group is very nice and very welcoming to a newbie like myself, and the group workouts are set up to accommodate different levels, different goals, and also for everyone to work at their own pace and comfort level. Still, everyone there outpaces me by a ton:)

All of that is just background… I don’t expect to keep up with anyone in the group, but I like the opportunity to challenge myself in my own way and learn from these more experienced runners. I have been looking forward to going to the workout tonight and working on my pace. When I left work, my blood sugar was running high (about 220) and I wanted to correct (since I wouldn’t start the workout for 2 + hours) but didn’t want to overdo it so I only bolused for half of the suggested correction. I only bolused for half of the carbs at dinner and set a temp basal rate of 15% for the hour before the workout. When I left the house though, my blood sugar was only 113. I hoped that the food was just taking a bit longer to hit my system and drove over to the track. I had a Level gel (15g CHO) before the core workout and when we started the intervals my blood sugar was still only about 106 on my CGM. I extended the temp basal (still at 15%) and started the workout. Halfway through the second lap I just didn’t have any energy and my CGM was reading 90 and dropping. I left the track, went to my car and got glucose tablets – chewing up 5 of them on the walk back to the track and then doing a jog lap. Another lap later, the CGMcatgym finally didn’t have a downward trending arrow, but it was stuck at 80. I ran maybe 6 more laps at various paces, all on the slow side. I ate 2 more glucose tablets but was afraid to eat more based on past experiences when I have kept treating stubborn lows during exercise only to spend an extended time fighting highs later*. Eventually, when the CGM arrow again started trending down and others in the group were finishing their high intensity workouts (8-12 laps at paces more than two times faster than my best), I gave in and spent the last few minutes drinking water, watching some of the other runners and chatting with a couple of women who turned out to be nurses in their day jobs and who were amazingly comforting and knowledgeable about diabetes.

I hate it when my diabetes feels like an excuse. And, I hate it when it really does get in the way of doing what I want, in the way that I want to. Diabetes didn’t keep me from going to the track workout, and it didn’t stop me from running, but it did impact how I had hoped to be able to do my workout. Sometimes, having to insist that I can do anything that I want to regardless of diabetes just makes me feel bad when diabetes really does get in the way. There’s no solution to this… I’ll still stand up in the corner of “diabetes can’t stop me!” and I won’t ever tell my daughter that a door is closed to her simply because she has diabetes. But, I also know that sometimes we will be disappointed because diabetes slowed us down or made us wait or kept us from reaching a goal on a particular day, in a particular activity. It takes a lot of resilience to get back out there the next time, and the next time. Luckily, living with diabetes gets us a lot of practice in being resilient.

*And, here’s how the feels are complicated… I made the right choices to slow down, to eat the glucose I did, but also not to eat more. My blood sugars have been pretty ok tonight, with one minor almost low that was easily treated and no lingering, after-exercise highs. So, yay me for managing it as well as I could in the moment. That is just balanced with the frustration of not being able to get the blood sugar where I needed it to be during the exercise opportunity.

Posted in Exercise, Living with Diabetes | 1 Comment

Adventures in D-Parenting: Picky Eater Edition

I’m sure I’ve mentioned (read: complained) before that one of the things I find most challenging with managing the Bear’s diabetes is what a picky eater she is. Sometimes I feel like everything around food is a battle and it’s already hard to have a healthy relationship with food when you are acting as your own (or your child’s) pancreas. I have tried various tactics (read a bunch of books & blogs, talked to other parents, CDEs, etc.) to introduce more balanced eating but usually after a week or maybe two, I get burned out and fall back to old habits. This is an area where I really have felt like a failure as a parent.

Totally the scene in our house (if the Bear was old enough to have a phone)

Totally the scene in our house (if the Bear was old enough to have a phone)

Finally, our CDE suggested that we have an appointment with their dietician and I finagled all of our schedules so we could talk with her all together. What a relief! She was understanding, knowledgeable, and realistic. She talked about language that frames the conversation around eating: picky eater vs. selective and about some of what can be behind kids becoming selective eaters like anxiety around trying new things or what foods will be like. Since we already know the Bear is hesitant to try new things in general – especially when others are watching – this made a lot of sense. She also talked about where the control and responsibility around food should reside. It is the parents’ job to provide sustenance; it’s the kid’s job to eat. Asking the kid what they want to eat puts the parents’ job into the wrong hands. If we want to give her choices, the choice should be between foods that are already ok with us. The dietician also suggested the book How to Get Your Kid to Eat… But Not Too Much (by Ellyn Satter) and I got a copy but haven’t started it yet.

I know that this isn’t rocket science, but it was helpful to us. We left with a plan to involve the Bear more in food planning and preparation (another tactic I have tried in the past but without the follow-through), to put a bit of whatever we are having for dinner onto her plate along with other foods that we know/think she will eat or that she has chosen from the options presented, and to set “small” goals of trying new foods without grand expectations. We’re keeping in mind that kids may need to be exposed to a food 15 or 20 times before it becomes familiar enough to become a food they will eat. This is especially important since I know that I have had a tendency to take one “I don’t like that” as a fact moving forward even though I “knew” that wasn’t realistic.

So, we have planned 3 weeks of meals so far, and there is still quite a bit of trial and error.

I am in love with this book!

I am in love with this book!

A huge help has been a cookbook I discovered at the library: Dinner Solved! by Katie Workman. Simple preparations along with easy ways to turn one recipe into more than one for different diets (vegetarian for me, including meat for the BHE or spicier for us and less so for the Bear) and great tips for which parts of each recipe are great for kids to do themselves.

It is still an ongoing adjustment to how much time all of this takes and one of the weeks was a perfect storm of night-time work obligations that messed with the meal plan pretty thoroughly. There have been a couple of meals that were too heavily weighted to “new” foods without other choices for the Bear and that definitely doesn’t work:) But, she has tried (at least one taste) carrots, chicken (non nugget!), shrimp (not fried), cauliflower, rice, granola, mexican lasagna (!), and cabbage. Has she fallen in love with any of the new foods? No. But there have been some nice surprises. She seems to be accepting that she is going to have to try a taste of what is on her plate without an hour of fighting about it. And, she actually sort-of liked the carrots (willing to try them again by her own admission), and said the mexican lasagna was “kind of good” (as long as she didn’t eat any olives or zucchini which were inside). I’m sure in most families these would be very minor events, and probably ones that occurred when the kid was 4 and not 8 years old, but they feel like a big deal to me.

Terrible picture, but you get the idea

Terrible picture, but you get the idea

Tonight was actually my favorite night yet. The plan was for egg salad (which we have gotten her to eat occasionally in the past) for make-your-own open-faced sandwiches on that little cocktail bread (which I loved as a kid) with add-ons like thin cucumbers, radishes, sweet pickles, mustard, curry. For sides: Asian slaw and homemade sweet potato oven fries. She tried the cocktail bread! She ate egg salad and a piece of regular white bread (since of course she didn’t like the cocktail bread…). She tried a little curry on the eggs and had a miniscule bite of the slaw (which was “disgusting”). She had tomato soup and 3 helpings of sweet potatoes. None of it seemed like a fight and she ate an actual meal-sized amount of “real” food (not junk, not sweets). I wish she had tried the cucumber or the radish but that was probably wishful thinking.

I’m sure we have many, many more struggles ahead. I’m sure she is going to get tired of “new” or unfamiliar or already-tried foods appearing. I’m already adjusting my expectations for how many new meals I can prepare in a week filled with school, work, homework, meetings, and other distractions. The BHE and I still need to have time to exercise and the after work time was somewhat being used for that. But, we are learning, and I feel better about our family food approach at the moment than I ever have. We still have pizza night on Fridays and I know I need to celebrate the small wins and not sweat the slow progress.

 

Posted in Books, food, Living with Diabetes | 1 Comment

Make Diabetes Easier, One Tip at a Time

Day 5: Let’s round out the week by sharing our best diabetes tips and diabetes tricks.

I am definitely not a life (or diabetes) hacker! I’m always impressed by the cool, ingenious, and clever ideas that I learn from others. In a previous DBlog Week (maybe the 5th?) I learned how to turn on the port light on my daughter’s meter* — something I had tried to figure out any way I could with no luck. I’m still grateful for that blogger’s tips every night I’m testing my daughter in the dark.

So, I’m expecting to learn a lot more from other bloggers doing today’s prompt than anyone will learn from me but here are two things that I’ve found helpful lately — one for myself and one for my daughter:

Vitamin D: Both my daughter and I are supposed to be taking vitamin D based on our doctors’ recommendations. I have no trouble remembering to take it myself since I have a couple of other meds I take daily and I just take them all at the same time — it’s part of my morning routine. I have really not done a good job of giving the Bear her vitamin D though. I tried keeping it in various places in the kitchen, on the dining room table, etc. and still we would go weeks without remembering it. Her endo always asks if she’s taking it and the last time I admitted that I wasn’t keeping up with it he gave me the solution I needed: Keep the vitamin D in with her pump supplies and make sure she takes it with every site change. This has been working great for us.

Pump Presets: I use the Omnipod and finally got around to using more of the available presets for temp basal rates and commonly bolused-for meals/foods. These are all really helpful on busy days. The meal bolus presets have helped me do a better job with pre-bolusing. I have no idea why, but it’s true. Having a couple of temp basal presets for high bgs also helps me cut back on rage bolusing.

I highly recommend that you check out some really great tips and tricks on the blog list for today’s topic!

*And, just in case there is anyone else out there who is stumped by the Bayer Contour Link Next meter and it’s test strip port light… When the meter is off, press the on button twice quickly and the light will come on.

Image & info courtesy of Cure Mollbayer

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Dear Health Care Santa

Day 4: Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

 

This is a huge topic for anyone living with a chronic illness. I can’t even talk about health insurance… I’m fortunate to have decent insurance but even so I have had to take vacation days in the past just to make phone calls to try to get things straightened out and I despise the feeling that we have to fight or negotiate to get the supplies we need to be healthy.

So, avoiding any more insurance talk… Instead – a Healthcare Wish List:

  • No comparisons: It doesn’t matter to me at all how my A1c compares with all of your other patients or whether my fasting glucose is “better” than X% of others you see. If my readings aren’t meeting the goals that we (I) are setting for my health then we need to talk about how to get closer to achieving those goals. It isn’t helpful for you to shrug off my concern because you have other patients who would be happy to have my numbers.
  • Ask me how I’m doing: At the beginning of our brief appointments, ask me how I’m doing, if I have anything I want to talk about today. Don’t leave whole-person questions or what I’m most interested in working on for the last 45 seconds of our appointment.
  • If I Say No, Listen: You know me, know that I work hard to manage my diabetes and stay healthy. If I am reluctant to do or try something please take the time to really listen to my reasons. Don’t just insist there is only one right way.
  • Ask Me: Before you say that I’ve done something “wrong” in my daughter’s diabetes care, ask me why I made that decision. I get why the SOPs exist, but I’ve also lived with this disease long enough myself and in her to have some idea of when the SOP doesn’t apply, or when the situation calls for a different approach. When we talk it through maybe I will reconsider and decide to do it differently next time, but maybe you’ll see that diabetes calls for finesse and flexibility along with settings and protocols.
  • Challenge Me: I’m the expert in my own diabetes, and in a lot of aspects of my daughter’s diabetes as well (though she’s still and always the expert in how she is feeling!), and my daily experience gives me great knowledge to work with. But… sometimes I am too close to all of it, or too burned out, or too stuck in a rut to try something new or recognize a pattern or make the best change. Don’t let me settle when there is something you can offer that will help one (or both) of us live an even healthier life.

I think the themes in this partial list are partnership, listening/communication, being present with me as an individual. I honestly don’t know if most HCPs can accomplish real partnerships with most of their patients given the brief appointments, heavy paperwork/record-keeping, and insurance requirements.  I could pretty much continue this list until next year’s Diabetes Blog Week but there are other things to do – including reading all the other posts out there!!

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Do Words Matter?

Here we are at Day 3 of Diabetes Blog Week! There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

In our day to day lives, I don’t have strong feelings about words and phrases that people use when talking about diabetes. The terms “diabetic,” “testing,” or “controlled” don’t automatically make me cringe. Intellectually, I get the preferences and how the language used can set the tone for interactions. For some people, always “testing” their blood sugar is going to lead to anxiety and feelings of being judged. In that context, I can see how “checking” is more neutral. Same thing for so many word choices.

I’m more sensitive to what vibe I’m getting behind and around the words… I’m pretty forgiving of language/words if they are being said with kindness and open-mindedness. But no words will help if I feel like I’m being criticized or judged about my own care or the Bear’s diabetes. Sometimes that leaves me feeling a bit confused — why am I ok when one person says something but go ballistic when someone else says the same thing? Of course, I’m also way more sensitive to anything relating to the Bear’s diabetes than my own.

I think my bottom line is that each person should be able to ask others to respect their preferences when it comes to diabetes terminology. The people who care about you and are part of your life will want to help out in this way. I’ll leave the greater advocacy issues to those already doing great work in this area!

Read more about language and diabetes using today’s link list!

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Body-Mind Connection

We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

 

The mental & emotional side of living with diabetes is the perfect place to use the oxygen mask analogy — yup, that way over-used one. If I’m not making sure that my mental health has on its oxygen mask first, I might as well forget doing ok on the physical side.

Does that mean I have any sure-fire strategies for managing the mental health side? Nope! I certainly get overwhelmed sometimes … especially if things are going wonky with both my own and the Bear’s diabetes. My go-to tools to hang on through tough times:

  • Use the number to decide what to do right now — I try not to get caught up in what I did “wrong” that led to the number on the meter screen, and try not to spiral out to the worst case scenario that might come from that number 6 hours from now. Just use the number to make a decent decision in the moment — drink some juice, do a correction. The number isn’t a judgement or a grade, just some information.
  • Get outside & move — I’ve never been much of an exercise buff, but it’s amazing what a walk or bike ride can do to improve mood as well as blood sugars. It doesn’t have to be a “work out” or major commitment either… A 10-minute walk around the block is almost always possible, and almost always helps me remember to breathe.
  • Vent — Hello DOC! Wallowing really never helps, but a quick vent on twitter can feel really good. Especially when someone says “I know!” and you realize that you’re not alone and you can get on with your day.

One big hole in my current health care is my medical team’s attention (ummm, lack of attention) to the mental health side of diabetes. My first endocrinologist and CDE were amazing in treating me as a whole person living with diabetes. They worked with me to achieve management of my blood sugars so that I could feel physically well enough to do anything I wanted to. At the same time, they acknowledged that diabetes also impacts mental health and helped me access resources (like a fabulous therapist who specialized in chronic illness) without making me feel ashamed or like it wasn’t part of their jobs. My current team is very good at reviewing my blood sugars and helping me make changes to my settings when necessary, but mental health almost never comes up at all.

I’m grateful that my daughter’s pediatric endocrinology practice is very proactive in this area. They talk directly to her, always ask how she is feeling (beyond just physically), and have a social worker/child life specialist in the office. I’ve read a lot about the transition from pediatric endos to adult practices and I worry about what her adult experience will be like. For now, I try to show her that it’s ok to feel sad and to wish that she didn’t have diabetes, but our mental health and happiness isn’t controlled by diabetes… We have so much to be happy about every single day.

Definitely excited to read blog posts on today’s topic! You can too – here.
Want to get involved in Diabetes Blog Week? Read all about it here.

 

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