Why So Needy?

Why so needy, Diabetes??

#kiddingnotkidding  I had had enough by 11:00 this morning. The chaos of buzzing and beeping had gotten on my last nerve. I have to wonder how often the noise from our devices is the last straw on our way to burnout.

  • The Bear’s Dexcom CGM was alarming pretty regularly all morning: UNDER 55! (despite the meter test at 90), UNDER 55! (oh wait, this time, it really is), RISING!, FALLING!, RISING AGAIN!
  • My own Dexcom CGM was alarming UNDER 55! UNDER 55! regardless of what I ate.
  • Anywhere from 3 seconds to 15 seconds after the Bear’s CGM receiver yelled at me, first the BHE’s phone and then my phone would echo it as loudly as possible. Never at the same time, but in sequence. And if you don’t pick up the phone and acknowledge that yes, you heard its obnoxious noise, it will continue to remind you at regular intervals.
  • Along with the alarms, the Bear’s CGM was vibrating angrily against the wooden table where it was resting & recharging — sounding like someone drilling into the side of your head.
  • Since I had to remove my pod mid-day 3 days ago for a MRI, it started “reminding” me that my pod was going to expire, going to expire!, has EXPIRED!, is still EXPIRED!!, REALLY EXPIRED!!!  Even though you then have 8 hours before you absolutely must change out the pod, it will remind you every 30 minutes or so.

Maybe because this was all going on since about 7 this morning (when my CGM insisted that I was high and my sleepy brain didn’t do anything but hit the button and go back to sleep) after a week + of nighttime basal testing for the Bear, changes to her settings from our recent appointment with the CDE (to work on some high patterns) only to have a week of lows at another time (which should have been impacted in no way by the changes we made), unexplained overnight high readings for me, extra site changes since both dexcom & omnipod had to come off for that MRI (take a breath)

Maybe because of all of that, the alarms today just seemed like too much. Why does Diabetes need my attention every second today? Doesn’t it get that the more it yells and alarms the more I want to ignore it? We’re like Lois & Stewie sometimes…

Is it a codependent relationship? I don’t know… definitely feels dysfunctional at the moment though.

A woman I know whose granddaughter was diagnosed T1 around the holidays was recently telling me about a day her granddaughter spent at her house. She’s one of those awesome grandmas who has been right there every minute, learning as much as she can about how to take care of her granddaughter and yet tries to keep everything as “normal” as she can. She was telling me about what a tough day it had been in terms of blood sugars – first low then high and no matter how carefully they did anything (insulin dosing, treating with carbs) it just never stabilized. She could tell her granddaughter was really not feeling up to par by the end of the day – tired, and just kind of run down. She asked me, “how long before this kind of thing settles down?” It breaks my heart to have to tell someone that it probably won’t ever “settle down” in any kind of sustainable way. Sure, there are days, even weeks, when you are in such a great zone and those blood sugars don’t really go on any excursions. But, just as you are breathing a sigh of relief, something you can’t even measure or know about changes and you’ll have a few hours, or a day, or a week of struggling. It’s no one’s fault and it’s unpredictable. I know she just wants to hope for a time when her dear granddaughter won’t have to feel wrung out after a crazy blood sugar day; a time when it all won’t seem so hard and be so d*mn frustrating. It’s hard to tell someone that I’ve given up hoping for that.

I still hope that there will be a cure someday, that the Bear will know a day when she doesn’t have to think about insulin, blood sugar, carbohydrates, hormones, illness, exercise, sleep, every-little-thing not through technology, but because somehow, diabetes is gone from her body. I still hope for continued improvements in technology, knowledge, treatment like the ones that have already helped me and our daughter live healthier, marginally easier, lives with Diabetes – and we will continue to participate in appropriate trials and take advantage of anything that comes along that can help us manage.

But, it’s harder to have hope some days than others. And it’s hard to hear the voice of hope amidst all of these alarms. Really, Diabetes?

 

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Diaversary #16

Today’s the day. 16 years ago, I drove myself to the ER – extreme fatigue, weight loss, unrelenting thirst, no appetite, peeing every 15 minutes or so. Did I know that at least 2 of those symptoms pointed to? Of course I did. But, I thought that “juvenile” diabetes wasn’t possible because of my non-juvenile age, and I knew I didn’t really have any risk factors for Type 2 diabetes, so maybe it was just a strange flu.

Years later, here I am. Relatively healthy, my stats mostly in range to keep my risk of complications low. Also raising a little girl who was diagnosed with T1 herself at age 3 and more recently autoimmune hypothyroidism. But, still, she’s relatively healthy too and we’re doing this thing.

I have always insisted on honoring my diaversary. Taking time on that day to give myself a pat on the back for my hard work over another year. I have a tendency to be hard on myself, especially when it comes to managing diabetes. I focus on the out-of-range numbers more than I sometimes should, and I have always struggled with not running myself too low because high bgs feel like a failure. Adding on our daughter’s diabetes has just given me one more set of numbers to blame myself for (never mind the fact that she even has diabetes – did I really need to give her that piece of the genetics??). So, the BHE and I often go out for dinner or do something special on my diaversary and I try to put my focus on all that I have done well instead. This past year, the Bear decided she wanted to celebrate her diaversary, and we talked about how proud we are of how much she knows about taking care of herself and how important it is for her to feel good about healthy choices that she makes.

This year, when the BHE asked me if I wanted to do something, I said no. I’m just not feeling it. I’m doing ok with all the diabetes management – we’re getting through our days, sticking to the meal planning, doing a mediocre job of keeping up with testing and prebolusing – but we also have our CGMs that give us some flexibility on the testing. I know I could be doing better – and, really, what is more important?? – but I’m tired of diabetes and my brain seems to short out at the wrong moments, forgetting to bolus at all (never mind prebolus), or looking back at the Bear’s download just to see how much more attention is being paid during the week when she has school than on the weekends when it is just us.

I haven’t been hanging out in #dsma chat on Wednesday nights, I’m not reading the blogs I usually do, I haven’t rescheduled the d-parent get together for the families in our school that I said I would. I can’t figure out if the Bear’s correction factor needs to be changed and my recent CGM graphs look like the Alps paired with some deep ocean trenches but I haven’t “found” a pattern to address with settings yet.

This too shall pass. It’s not like I’ve never had diabetes burnout and I’ve always gotten through it one way or another. I have the BHE to make sure I don’t fall down on the job of the Bear’s diabetes so she’ll stay safe while I get my sh*t together. It’s possible that the thing I hate most about burnout is how guilty the burnout itself makes me feel and what a waste of energy that guilt is (vicious cycle anyone?). There’s both what you “know” to be true (it’s a marathon, not a sprint; don’t let perfect be the enemy of the good; etc., etc.) and then what just “feels” true – and while sometimes what you know can get what you feel into better alignment, sometimes that just doesn’t work. This is one of those times.

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Obligatory Catch-Up Post

I’ve been thinking a lot about stuff that seems perfect for blog posts, but then I never actually do the posts. So, that brings me to this point where I have to do the obligatory catch-up post where I explain why I haven’t posted since August 2016 and run down what has happened over those months. I promise, I’ll keep it brief.

The BHE has been job searching – no fun. BUT, it is amazing having him around more and able to take on some more of the random things including diabetes-related tasks with the Bear. Some of the potential work situations are far enough away that he would have to commute weekly (there during the week and home on most weekends), and I’m starting to pre-panic about dealing with everything myself all week.

The Bear came home from diabetes camp last summer willing to try belly pump sites (huzzah! a miracle!) and talking about how much fun she had, and writing letters to kids she met — a couple of months later she changed her tune, says she doesn’t want to go back, and that she was homesick. So, lots of parental conversation about whether to “make” her go in 2017, if it would be different if she knew a friend was also going, etc.

We all went to Family Diabetes Camp in October 2016! Our pediatric endo practice and a nearby nonprofit (P-PODS: Parents and Providers of Diabetic Children) partner up to offer a family camp experience over a weekend. There are all-together activities and then sessions just for parents to share ideas, feelings, make connections, etc. We met an awesome family with a girl about the same age as the Bear and they came for a visit in December. The whole experience was awesome. You can find P-PODS on Facebook and see a camp video there: https://www.facebook.com/MainePPODS/

While at family camp, the BHE’s father died. Not unexpected but still very difficult. Lots of family time followed and the BHE has been making sure he’s offering his mom support and keeping in touch. Busy being the sandwich generation.

On the Bear’s diaversary date, we got her new diagnosis of autoimmune hypothyroidism. I think maybe we’ll skip that day this year.

I almost completely fell off the running/exercise wagon over fall and early winter — lucky if I got out there once/week. Then I had the highest A1c I’ve had for years. Then I did a challenge through our local running store and had to run or walk outside for at least one mile every single day in January. I’m glad I did it, I’m glad the winter hasn’t been too bad here, I’m really glad January is over.

And, here we are. New Year. Mild winter, but still winter. I’m dealing with some diabetes burnout. Dealing with it in a good way or not remains to be seen. Maybe doing some blogging will help me feel less alone with it and force my attention to things that I can do that will be constructive. We’ll see.

 

Posted in Blogging About Blogging, Burnout, Camp | Leave a comment

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 | 1 Comment

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