Hello, running

Dear running,

What’s happened to us? Only a year ago we were so close. Yes, there were those two falls in April, but honestly, we were already in trouble before then. I have hung out on the bike a few times but that shouldn’t be coming between us. Diabetes has always been a challenge – but we’ve tackled that together. Running consistently, though it caused some instability at first, actually made my diabetes tamer overall. I loved how capable and strong you made my body feel – in contrast to how broken diabetes can make me feel sometimes. And even more so – I relished the head space I got when we were together.

Yet, here we are. I can barely look at my poor, neglected sneakers. I’m lucky if I get out with you once every two weeks. I know the new medication for the seizure disorder is sapping my energy and my motivation, and our family schedule has been hell lately, but making time for you would help me deal with the rest of it. I just want you to know that I’m trying to find my way back to you. I’ve gotten out for time with you twice this week and I hope you’ll have some patience as I get back into our relationship. I promise, I’ll keep trying – and maybe even buy us some new sneakers.

Love, Lesley

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Elle and Coach: A Girl and Her (Diabetes-Alert) Dog

I’m sure many of you have read the 2016 book Elle and Coach about the experience of one family with a T1D kid and their journey to get a diabetes-alert dog. The mom in the family – Stephanie Shaheen – does a great job in the book (co-written with Mark Dagostino) describing some of their emotions from Elle’s diagnosis to the decision to pursue a diabetes-alert dog, to their life after that choice.

ellecoachWe actually live in the same community as the Shaheen family, and Elle’s grandmother was governor of our state and is currently one of our senators. Pretty high profile in our area. Elle is quite a few years older than the Bear though, so we never met them through school or other activities. Elle did attend the same elementary school as the Bear and at one of the school’s annual fundraisers (a huge silent auction), we had the winning bid on a prize donated by the Shaheen’s: a copy of the book signed by Elle and Coach (!) and a lunch with Elle, Coach, and Stephanie. You can probably imagine me geeking out over this opportunity.

Stephanie and Elle couldn’t have been more welcoming or friendly and it was great to see a diabetes-alert dog on duty, in person (or, in dog?). I was fascinated by how much training the dogs go through before they even meet their person/family. And then, how much training the humans need to go through as well to understand how to interact with the alert dog in ways that let the dog do his/her best work. The Bear of course mostly loved meeting Coach and just being around this awesome dog who works so hard to keep Elle safe and help the rest of the family be more aware of when Elle might have high or low bgs.

At the time we met, Elle had successfully navigated middle school with Coach’s assistance and I loved that the Bear got to see someone a few years ahead of her, living a great (and very normal) life with diabetes. She asked Elle a few questions about school (where does Coach sit in class? do other kids ask a lot of questions or want to pet him?) and of course she left the lunch wanting a diabetes-alert dog in the worst way.

I always feel lucky when someone else living with T1 gives us a glimpse of what things are like for them – what tools they use, what choices they make and why. If you have thought or wondered about a diabetes-alert dog, I definitely recommend this book — check to see if your library owns a copy or can interlibrary loan it for you. It’s also available in paperback. We aren’t in the market for an alert dog yet ourselves (much to the Bear’s disappointment!) but it’s obvious that they can make a huge difference.

ellecoachsign

Our signed copy!

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Reasons for Not Blogging

It seems like most bloggers do this kind of post at least once a year… “I haven’t posted here in a while…” “Here’s why this blog has been so quiet.” My turn.

The strange thing is that I’m always thinking of topics I want to blog about — or at least thinking while something is going on: “this would make a good post.” But, that’s never the time to actually write a post and I never seem to get back to it. Finally, I decided I would start with this post — try to lay out some of the things that keep getting in my way — and hope that helps me get back to writing.

Why I Haven’t Been Posting:

Time – like most people I know, I never feel like there are enough hours in the day for everything I want to do. Managing my own and the Bear’s diabetes, adjusting to uncertain scheduling with the BHE’s job change, getting my mom (sandwich generation!!) to appointments, managing some tricky work situations, and figuring out side effects from the new medication I’m on (not to mention mental adjustments to a new diagnosis), haven’t left me much head space or free time to make blog posts. At the same time, I always feel like “too busy” is a really lame excuse. We make time for activities that are important to us… Maybe it’s more the head space that is an obstacle.

Attitude – I’m pretty sensitive to how I and others write about diabetes online. I’m not a fan of portrayals of diabetes as all misery and suffering and I’m also not a fan of “sugar”-coating everything. Sometimes, it seems like there’s no middle ground online. In trying to be “realistic” or honest about how we’re feeling on a particular day or about one situation, we might be criticized for being too negative or looking for pity or sympathy. But, to find a silver lining for every single part of diabetes or to only describe living with diabetes as a gift or a blessing really wouldn’t capture my experience. I have definitely been feeling like some of the posts I have thought about writing would seem like too much negativity or whining. Once my thinking starts down this path, I give up on the idea of writing.

Burnout – I’m sure this ties into my concerns that anything I have to say about diabetes right now would come across as negative. Much of the time, I am feeling done with diabetes. I haven’t been able to bring my A game to managing settings on my pump or on the Bear’s pump. We went to appointments for her today with CDE and Endo and I’ve been putting off dealing with various blood sugar issues myself in favor of letting them suggest some changes at this appointment. I’m being very reactive with my own diabetes management – never the most effective approach – and I’m starting to think I could be sliding back into hypoglycemic unawareness. It took a ton of work to get some awareness back so I’m angry with myself for backsliding, but not angry enough yet to do anything about it.

I hope that I’ll get around to posting more often, reading more of my favorite blogs, and get back to the #dsma twitter chats on Wednesday nights. I know that less communication about life with diabetes doesn’t help anyone – not me, not the Bear, not anyone who might be seeking a “me too” moment who might stumble on this blog.

Posted in Blogging About Blogging, Burnout, Hypoglycemia Unawareness, Living with Diabetes | 1 Comment

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