Trust & Medical Device Companies – Mutually Exclusive?

I should start this post with some disclaimers… I do work in customer service, and have done customer service training and audits – I take it pretty seriously. I know that the customer isn’t always right and consistency of service and fair application of rules/ procedures are important. I should also acknowledge that I’m pretty emotional about this interaction, while I know for the company it is just business.

Our daughter’s pump had been out of warranty for maybe 6 months or so when we started getting calls asking us if we wanted to replace it. We hadn’t had any problems with the pump and we have vaguely thought about switching to another pump at some point so I wasn’t in any hurry. Finally though, the calls accelerated and when the pitch turned to how quickly a replacement pump can be sent while under warranty (overnight) as opposed to when out of warranty (get doctor’s orders/request, submit to insurance, etc, etc), requiring our 8 year old to go onto injections while waiting – I started thinking about school starting soon and how hard it would be for us to deal with injections, and decided we better go ahead with the replacement.

Date of service on the new pump: June 26. The Bear went off to Diabetes camp in August for a week. (so amazing… see previous post) At the end of camp, we saw a representative from the pump company at a diabetes fair at the camp. Surprise! Just the day before, their newest pump was approved by the FDA — with new features that we are actually interested in, and with changes to the integrated CGM that would have convinced us to change from the CGM she currently uses to theirs. The rep said that even though we were outside of the 30-day “return” period, it was very close and we should definitely call to see if we could return the new pump and make the switch.

We all got kind of excited — which we probably shouldn’t have. There were several things that it seemed would make a big difference in the Bear’s management and even quality of life – And it seemed like we had gotten the replacement pump so close to the launch of the new one that we should be able to work something out; after all, we’ve been customers for more than 5 years, we just sent them $500 out of pocket, and we would be switching to their CGM.

But, it turns out that rules are rules. The customer service person I spoke with on the phone was very brusque. She explained that there would be an upgrade program at some point for anyone who had gotten their pump after 1/1/2016 and the cost with trade-in would probably be around $1,000 but they didn’t have any specifics on that yet. When I countered with the fact that we just paid $500 (plus the insurance payment), she just repeated that there would be an upgrade program at some point. She also said that there were only “so many” available since production was just beginning, and those were prioritized for those with out-of-warranty equipment or new customers.

So basically if I had waited another month before looking to replace the Bear’s out of warranty pump, we would be one of those prioritized customers. And, I moved ahead with the replacement when I did because this company was calling repeatedly and made me feel nervous about the pump she had with the talk about the difficulty and slowness in getting a replacement pump since ours was out of warranty.

I get it. They have to draw a line somewhere and we fall on the wrong side of that line. I don’t think that the situation would bother me at all (or at least a lot less) if a couple of things were different:

  • If I had initiated the request to replace the pump without phone calls (multiple! and frequent!) from the company urging me to do so
  • If the rep we saw at the diabetes fair hadn’t made it sound so likely (easy, even) that there would be wiggle room
  • If the customer person I spoke with had seemed even a little sympathetic or understanding

Instead, I feel kind of taken advantage of, unappreciated as a customer, and a bit betrayed by a company that we have been trusting our daughter’s health to since her diagnosis. It certainly has soured the relationship which is too bad since before this we have been relatively happy. We’ve paid for our share of this replacement pump and we’re lucky to have insurance coverage that allows us to have this technology. So, we’ll continue on with the pump and the non-integrated CGM as we have been and I’m sure we will get some good years out of the pairing. But, I doubt we will replace this pump with one from the same company.

In any area of our lives, we prefer to buy products or services from businesses we like and trust but it is essential when it comes to a medical device that my daughter’s life literally depends on. I really wish that this company’s reps could have made me feel like our experience mattered to them. Even if the situation couldn’t be resolved any other way, that would have helped. Diabetes is hard enough to live with and I expect better from our medical technology providers.

Posted in Diabetes Tech, Getting it Wrong, Living with Diabetes, Pump Management | Leave a comment

All Hail D-Camp

After years of hearing about the great experiences others (and others’ kids) have had at diabetes camp, we finally have some stories of our own. The Bear went away to Clara Barton camp for a week – first sleepaway experience, first time the BHE & I have spent a night without her for over 8 years. Whoa.

I tried to manage my own expectations… Of course, I hoped that she would love camp so much that she would want to go back for a month next summer, that she would return eating new foods and open to trying new sites for pump and cgm, and that she would have new diabesties for pen pals & visits — but I also knew that was pretty unrealistic for 5 days of diabetes camp.

The BHE and I really enjoyed our time. We went out to eat a couple of times without pre-planning or having to pay a sitter (woo-hoo!); we went on walks with the dog together and got to wake up quietly instead of via 8-year-old alarm. We missed the Bear of course, but without any of the anxiety that usually comes along with her being with other people who don’t necessarily “get” it, and without the very short deadline that comes with a brief birthday party or playdate or day camp.

I think I was more burned out from taking care of both of our diabetes than I realized. The break from packing lunches (with carb counts & insulin instructions included), “teaching” the cliff notes version of managing diabetes to a new camp every week, deciding whether to set alarms for overnight testing, etc., etc. was amazing and so much more of a break than I even expected. My own bgs weren’t very cooperative, but it was still a break.

When we picked up the Bear she was clearly glad to see us (phew!) but also seemed to have had a good time. Over the days we’ve gotten to hear bits and pieces of what she did, who she got to know, and (of course) what wasn’t so much fun (she didn’t get to swim in the pool because she had ketones & couldn’t take her pump off). She did say on pick up day that she definitely wants to go back next summer, but still for one week — not for two.

More than any of these details though, we can see some hints of greater confidence in her as well as a bit more understanding of what it can be like not to be the only one her age living with diabetes. She told us that she wanted to try out an insulin site on her belly when she got home — hallelujah! Music to my ears 🙂 We’ve been “suggesting” branching out for sites for more than a year with no success. The first attempt was bad… we hit a blood vessel/nerve and needed to take it off right away. I was sure that would probably set us back until next year’s diabetes camp but two days later she said she wanted to try again. That second time went much better and then tonight she did her second successful belly site. This is going to give her back/butt a much needed break.

She is justifiably proud of this new, brave step and wants to share it but is asking questions about how it will be received by different people. She originally wanted to tell some kids at this week’s camp but quickly realized herself that most of them don’t even really know she has diabetes and none of them are likely to “get” why this is exciting. She came up with a few people who will celebrate it with her (school nurse, a friend of ours – adult – who has T1 and who went to Clara Barton as a kid) and also is feeling more motivated to reach out to a couple of new Clara Barton camp friends.

I’m so proud of her in so many ways. And so sorry that she has all of this to deal with. It’s a mixed bag. I wish that more people didn’t seem to dismiss the camp experience when they hear it is “diabetes” camp. I wish that she could have that kind of community around her much more than just one summer week. I wish it wasn’t so hard to articulate all the feels.


Posted in Burnout, Camp, Others caring for your T1 kid | 3 Comments

Bandwidth Adjustment

Let’s face it… I knew that this appointment at the endo’s office wasn’t going to be the best ever. My exercise routine went from 3 times/week to once every 2 weeks, I’ve been up a bunch of nights doing basal testing on the Bear, and I’ve been seriously WAG*ing boluses and corrections for myself. I’ve been waking up higher than usual and suspected that was reflecting out of range numbers overnight — at least that seemed to be the case when I glanced at my own CGM in the middle of the night when up testing the Bear.

A couple of weeks ago, amidst all of the meal planning/preparation – too hot to run – sleep deprivation/basal testing – guessed corrections that (surprise!) never seemed to work, I had the thought that I only seemed to have enough energy/bandwidth to manage one person’s diabetes. I suppose that would be ok if there weren’t two of us in this family living with T1.

We’ve really been concentrating on the Bear’s blood sugars and nutrition over the past few months. I’m feeling pretty good about the food/diet changes we’ve been making at home but there’s no doubt that we’re also spending a lot more time on planning, preparing, and getting the Bear to eat or try new things. Then, we went on vacation and the Bear’s blood sugars went crazy and it wasn’t just vacation-eating that was doing it. Days of 300 + bgs and corrections weren’t touching it. When we got home, time uploading data, figuring out changes, then all of the follow-up testing to see if the changes made were going to be too much, not enough… We probably still have a bit of tweaking to do, but things are much better.

Much better with her blood sugar averages… not mine. I went to the endo office today and my A1c came back at a number** I haven’t seen in years. I was expecting it to be higher than in March, but not higher by this much. Immediately: disappointment, frustration, sadness, exhaustion. The four horsemen of diabetes.

I fessed up to my lousy exercise performance (but I know that isn’t the whole story) and my lack of attention to my own diabetes. My endo countered with the likelihood that the drop in exercise was more of a factor than I was thinking and validated how hard it can be to manage diabetes times two. We went over all the data (which she is really good at) and as I expected I already know what I need to do. Attention must be paid***.

I need to get back into a good exercise routine too – for my health and my sanity. Of course that will make my blood sugars even more unpredictable for a while until the routine really gets set, but it’s necessary. I may know what I need to do, but I still don’t know how I’m going to do it. The time of day I used to run regularly has been completely taken over by dinner. The few times I have gotten out have meant scrapping my best-laid plans for dinner. There just aren’t enough hours in the day sometimes.

Still, I can set some goals and do my best to achieve some more consistency with better habits:
Test more often – and especially run corrections through the PDM
Work at getting bedtime bg numbers into a good range so I don’t spend 8 hours + out of range/high
Plan meals (dinner) around a few scheduled runs during the week so that I can get out and exercise while still maintaining the nutrition goals for the Bear
Track food/eating for a while to force more thoughtful carb counting and eating (ie: back to MyFitnessPal)

Luckily the BHE is (as usual) very understanding and happy to help out however needed. And, in just over week the Bear goes off to D-camp (woo-hoo!) so I’ll get almost a week of only managing my own diabetes. I’ve lost track of how many times I’ve done this “starting over” thing — setting “new” goals, buckling down, re-focusing. And, I’m only 15 years in… I know that lots of people have done this for 30 years, 40, 50. Chronic is one of those things that is only understood, or truly felt, through experience.

Hey… wish me luck!

*Like SWAG (Scientific Wild Assed Guess) for carbs but without the scientific part…
**I usually don’t share specific numbers since everyone is different and my point is only in comparison with myself and in relation to my own goals – not as a comparison to anyone else.
***apologies to Arthur Miller.

Posted in Burnout, Carb Counting, Endocrinologist, Exercise, Living with Diabetes | 1 Comment

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

Posted in Uncategorized | 3 Comments