Sugar Rush
Erin was my guest on episode 170 of the Juicebox Podcast. Check out her episode and her blog, 'Sugar Rush Survivors'.
After my son’s diagnosis in 2013 at the age of 21 months old I did what a lot of parents do when faced with a life altering diagnosis. I searched online for anyone sharing their experiences with type 1 diabetes (T1D). I joined Facebook groups, read blogs and listened to podcasts. One source I found was Arden’s Day by Scott Benner.
A few months ago on one of the T1D Facebook pages I follow I saw a post by a familiar name. Scott asked for input from fellow parents of children with T1D for his Juicebox Podcast. I thanked him for his podcast with Dr. Denise Faustman and offered to talk with him for the podcast. We connected on Skype and recorded an episode titled, 'Just another Tuesday with Type 1 Diabetes'.
I have experienced the instant bond among T1D parents many times now and it just never gets old. Being able to look another person in the eyes, knowing that they understand the triumphs and fears of this daily life is incredibly reassuring. To hear compassion in another person’s voice in answer to my questions and frustrations makes it easier to continue with the hundreds of decisions I make to keep my son’s blood sugar in range as much as I possibly can.
Scott has brought that compassion and understanding to listeners all over the world and is continuing to make the diabetic online community (DOC) a landing pad of understanding and education. When we spoke for the podcast he encouraged me to lower my son’s Dexcom high alert from 170 to 130. I had been nervous to lower it prior to talking to him but I tried it. It has helped us keep his blood sugar in range by alerting us of rising blood sugar so we can act on it sooner than we had previously.
I found another powerful connection when I met my friend and blog partner Alese. When my son was diagnosed a few months shy of his second birthday we were in the hospital for four days of intense education before we were allowed to be discharged. We had so much information crammed into our heads in such a short time but my son was still so young that he couldn’t tell us how he felt with highs, lows, or the in-betweens. When I met Alese I was grateful that she could translate how highs and lows feel for her. But I was shocked and dismayed to find how little information she was given upon diagnosis as an adult.
As we realized how powerful this connection and exchange was for the two of us, we decided we couldn’t keep it to ourselves, and the idea of jointly writing a blog was born. Sugar Rush Survivors is our attempt to share with others what has worked for us, what still frustrates us, and what lifts us up in our daily management of T1D. In addition to the blog page we manage the Sugar Rush Survivors presence on Facebook, Instagram, and Twitter.
I am grateful for the opportunity to speak on Juicebox Podcast and write on Sugar Rush Survivors adding my voice to the many others in the DOC to say, “You are not alone!”
Blog: www.sugarrushsurvivors.com
Facebook: https://m.facebook.com/SugarRushSurvivors/
Instagram: https://www.instagram.com/sugarrushsurvivors/
Twitter: https://mobile.twitter.com/contact_srs
Empathetic parenting: Pros and Cons
Empathetic parenting has benefits but comes at a price...
empathy - noun em·pa·thy \ˈem-pə-thē\
1: the imaginative projection of a subjective state into an object so that the object appears to be infused with it
2: the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner; also : the capacity for this
Below are some excerpts from a Quartz article about the benefits and risks of empathy as it relates to parenting and caregiving. I thought we all would benefit from reading the findings. I pulled some interesting passages but encourage you to click over to Quartz and take in the entire article.
Best,
Scott
from Quartz article by Corinne Purtill
“Caregivers of people with chronic illness develop chronic inflammation and elevated stress hormones over time”
Kids with empathetic parents have well-documented advantages: less depression, less aggression, more empathy themselves. Parents also report better self-esteem when they make the effort to understand their children’s feelings.
But inside, it’s tearing them up.
“It’s not selfish for parents to make time for those things—it’s actually critical for their own mental and physical health.”
Empathy requires us to push our own feelings aside to focus on someone else’s, an effort linked to increased stress and higher inflammation. Empathetic parents may also be more willing to sacrifice their own health for their children’s sake, forgoing things like sleep, exercise, and other activities that could mitigate the stress of caregiving.
“In adolescents, parental empathy was significantly associated with both better emotion regulation and with less systemic inflammation.
For parents, being empathic was associated with greater self-esteem and purpose in life, but also with higher systemic inflammation.”
I see London, I see Florida, I see Arden's Dexcom CGM data
As our children get older our family is sometimes required to split up to accomplish everything on our calendar. You know, our son Cole my have a baseball game on one side of town while Arden has a game three towns over, stuff like that. Kelly and I never like to miss the kids stuff but it happens.
Last week presented us with a twist on that theme when Kelly's job took her to London the day before I was to leave for a Florida based college baseball recruiting weekend with Cole. Kelly left on Wednesday and was returning late on Friday night. I was leaving early Thursday morning and not returning until Sunday evening. Arden had school on Thursday, she was off Friday - okay, you following the set up? Kelly in London, Scott in Florida, one day of school and a day off to cover before Kelly returned home... what ever should we do?
My first inclination was to take Arden to Florida but that would mean her missing a day of school and to be honest, I didn't want to buy her a plane ticket and drag her from one hot baseball field to another, she would not have enjoyed the trip and I wouldn't enjoy spending the money.
Too expensive + too boring + too much school missed = Arden stays home.
The only person available to stay with Arden at our home was my mother and she knows exactly zero about managing type 1 diabetes, but did it matter that she didn't know anything about the day-to-day of type 1? Not if I can see Arden's BG on my phone it doesn't.
I thought about all that could 'go wrong' while I was gone and wondered if I could control the variables remotely, the possible issues that I could image were:
Could Go Wrong
- OmniPod insulin pump could need to be changed (Arden can do this on her own.)
- Dexcom sensor could need to be changed (Arden has never done this but without the Dexcom, none of this works.)
- Overnight (Arden wouldn't wake up overnight if a tugboat crashed into our house.)
- School (I can run school remotely as we normally do... as long as my plane had WiFi)
Plan for Could Go Wrong
- If a pod needs to be swapped Arden will do it but we don't keep insulin at school so I sent Arden to school on Thursday with pods and insulin and wrote to the nurse explaining what was going on. CHECK!
- Having a working Dexcom is the lynchpin to this entire plan and neither I or Kelly can come home if it stopped working. Arden has never changed a sensor by herself. Hmmm, wait... a boy in Cole's grade wears a Dexcom! I called his mother (who I know at best tangentially) and explained the situation. I told her that it was unlikely that Arden would let her try to put a sensor on her but asked if she could be there to oversee if necessary. She rocks and agreed to help if needed! CHECK!
- Overnight what I really needed was an adult to answer the phone and wake up Arden for me, my mom can handle that. CHECK!
- I booked a flight on an airline that has WiFi. Kelly was prepared in London to take over while I was in the air should I encountered a connection issue. CHECK!
Best laid plans and all, but how did it go in the real world?
During my flight
Everything worked out as planned. I woke up early for the plane, made Arden's lunch, counted carbs and packed up her pods and insulin. My mom woke Arden up in the morning, we texted while she was getting dressed to get her BG in place for the morning. The WiFi on the plane was great but we still maintained a multi-person text message thread so Kelly could watch what was happening from London and take over if I dropped out of the thread. We bolused once or twice while Arden was at school that morning, all from 35,000 feet.
I was on the ground for Arden's lunch time pre-bolus and on a ball field when it was time to talk about her pre-bus routine. My mom cooked dinner and I pre-boluses for it. On Friday I managed Arden's BGs and mealtime insulin from my phone while Cole made the catch you'll see below. Arden changed her OmniPod during a playdate late that afternoon without incident. Kelly returned to our house around midnight and took over the diabetes stuff. I slept that night like a baby.
My Take Away...
With a reasonable, but not heavy amount of pre-planning, we left our eleven year old daughter at home with a person who had almost no working knowledge of type 1 diabetes and everything was fine. Arden experienced a low BG (53 on Dex, 61 by finger stick) Thursday night around 2:30 am. My Dexcom Follow app alerted me, I called and woke up my mother who in turn woke up Arden and she drank juice as I instructed. I then waited up to make sure that the juice had the desired effect and when all was good about twenty minutes later, I went back to sleep confident that I would be alerted if something changed. In the twenty-four hour period that began at school and ended with that low, Arden's Bg was mostly stable, largely in range and only spiked to 200 twice. Two spikes and one low felt like a huge win to me.
Tomorrow night Arden goes to a sleepover at a friends house, no one in the home has the slightest idea about type 1. We will arrive ten minutes early to install the Dexcom Follow app on the mother's phone, I'll talk about how to handle emergencies and that'll be it.
Your Take Away...
Long run in centerfield. Cole saved a game while in Florida with this catch in the last inning of game 2.
I'm forever telling you that diabetes and fear do not have to go together and I wholeheartedly believe those words. Last week I put my money where my mouth is for two reasons. A. It was the right thing to do for my family and B. I wanted you to see that even in this completely odd and distant situation, things would work out.
I want to encourage you to take a chance too. Who knows, maybe you can move your life with diabetes a bit closer to where you want it to be.
I'll be talking more about this trip and other topics on next weeks episode (#34) of my podcast. If you haven't tried the Juicebox Podcast yet, it is available on this site, iTunes, Stitcher and everywhere else that podcasts are available. Subscribe today to be automatically notified when new episodes are online - It is 100% free.
I survived the deadliest day in Everest’s history, and I’m still surviving it
Listeners of my podcast may remember a two part conversation that I had with Elna Narula, mother of Svati Narula. Svati (a person who has type 1 diabetes) was tragically caught in an avalanche on Mount Everest and survived. Most recently Svati has published an article called, "I survived the deadliest day in Everest’s history, and I’m still surviving it" about her ordeal on Everest and I wanted to share with you.
You can read Svati's article here and listen to my conversation with her mother on the Juicebox Podcast - Part 1, Part 2.
All episodes of the podcast are at JuiceboxPodcast.com, on iTunes or your favorite podcast app.
Six Nights of Sleep
The insanity of youth sports may have just saved my life...
I've lost track of how long it's been since I've had a revelation about type 1 diabetes parenting that I felt should be shared. It has bothered me that I haven't written as much over the past year on this blog, professionally and for fun as I expected that I would, but I've rationalized the drop off by telling myself that I didn't have much to say.
Today I have something to say
Last week very early on Thursday morning I drug myself out of bed after only sleeping for a few hours because of a stubborn blood sugar and turned on the shower. It was just before five in the morning and I was about to drive to the airport with my son Cole. Cole is fifteen and his baseball team was about to compete in a week long tournament in Georgia. Cole and Arden have both played in tournaments in the past that have required a night or two in a hotel but this was my first experience spending a full week away from home where my wife and I had to split up to care for our kids.
I went to Georgia, Kelly stayed in New Jersey
Initially the trip caused us some angst. The cost of spending a week in Georgia is oppressive and felt ridiculous when considering that Cole is only 15. There was the specter of Arden's Omnipods and Dexcom CGMs needing to be switched during my absence, not to mention that Kelly had to use precious vacation time so she could stay with Arden. But I digress, let's get back to me in the shower.
Cole making a crazy catch in centerfield - Georgia
I was standing in that shower last Thursday morning completely sapped of physical and mental resilience. Next month Arden will have type 1 diabetes for nine years and I am so far past the day where I ignorantly believed that I was the one human being on the planet that didn't need a good night's sleep, that I now exist day-to-day in a zombie like manner dragging myself to the next handful of hours of sleep. Never-the-less I dutifully washed myself and woke my son, we drove to the airport and made our way to Atlanta where I met up with my son's team, each parent that accompanied had their own ideas about how to pass the time in Georgia - I was no different.
We all attended the games but there was so much downtime. One group of lone dads took the opportunity to relive their youth; some families traveled together and took day trips in between games... I slept because I had just enough focus left to recognize that if I didn't I wasn't going to make it much longer. The first two nights I slept for close to twelve hours respectively, on the third night I crammed in ten hours. On Sunday afternoon, my brain restarted. Some fathers were sitting around talking about the election and I was following what they were saying. The conversation moved back and forth, the topics were deep and flowing and I was keeping up and having thoughts of my own. I had not felt like this in a very long time. I then remembered a few months prior having a (semi) conscience thought that I was unfocused most of the day and that I was having trouble thinking. One night, not too long ago, I recall sitting up with a low blood sugar and feeling like my heart was going to burst. Yet after only three days of sleep here I was able to keep up in a fast-paced and thoughtful conversation.
I took some ribbing over the week for my early to bed late to rise game plan but I was undeterred and I tried to explain my exhaustion to a few of the other dads, they did not come close to being able understand, though I could tell that they thought they did. Yesterday Cole and I flew home after seven days of baseball in the unrelenting Georgia heat. I spent six glorious nights sleeping on a sketchy Marriott mattress that in any other situation, I'd have thrown out a window. Today I am a new person but that's not the end of my story.
While I was sleeping Kelly and Arden were at home living
Arden swapped two Omnipods by herself while I was gone and Kelly applied her first Dexcom sensor! I was super proud of both of them but not surprised in the least at the deftness at which they handled the tasks. It turns out that by removing me from day-to-day life, we removed a few misconceptions that have been solidified by time. You see up until five seconds after Kelly inserted Arden's Dexcom sensor, Arden was sure that only I could do such a thing. Now she knows that Kelly can as well and I'm betting that Arden is now on her way to believing that she can too. The girls also had fantastic control of Arden's BGs during a week were Arden played or practiced softball almost everyday and we all know that in itself, is no small feat.
The only thing left for me to do is to find a balance that keeps me from sliding back into the brain fog that allowed me to fall so far from feeling human without allowing Arden's care to suffer. It's too nice feeling like this again and I can't and won't ever go back. You have no idea how relieving it is to write this today... I thought I had lost my ability to write. I would have been heartbroken by that feeling, you know, if my brain wasn't numb. Instead my life was drifting away like a slow iceberg trudging along without me noticing the direction that it was taking.
If you are a long time diabetes parent please talk to your loved ones and find a way to get yourself significant quantities of rest and please don't stop sleeping until you feel like yourself again. You aren't the only person on the planet that doesn't need sleep and the fog that you are in right now is very likely clouding your reactions, thoughts and ability to live well.
If you are a new diabetes parent, heed this warning. You will not be the exception to the human need for sleep. I thought I was for years and had it not been for this baseball tournament, I may have died prematurely still believing that I was. No matter how badly I want Arden's blood glucose to stay in range, not sleeping to accomplish those numbers can't be the answer. A balance must exist and I'm going to find it.