The Importance of the Diabetes Community
This is the second in a series of five pieces that I wrote for Omnipod's Suite D blog. Part three is live on Suite D now and will arrive here next month.
It's a paid freelance gig, you can read my disclaimer about that on part one of the series (link below),
Part 2: Finding Support
My bedroom was pitch black and the house completely silent. It was well after three in the morning and I hadn’t been to sleep. My belief that my daughter Arden’s blood sugar would rise to a safe level was tenuous that evening so I was watching over her even more than usual.
When I fall asleep the likelihood of me waking up when I need to is slim. So on nights like this one I tend to just stay up. This night happened before we became continuous glucose monitor users and I would periodically walk from my room to hers to check her blood sugar. Each time I climbed back into bed, I became a little less certain that I could stay awake. Because my wife was sleeping I was trying to stay still, my eyes were sore from a long day that was getting longer. I had to stop watching television on my laptop, because it felt like there was sand in my eyes. I was exhausted, bleary-eyed and pretty sure that I was about to nod off – so I opened my Twitter app and, perhaps out of desperation to stay awake or maybe in an effort to not fall apart, I told who ever may be out there what was happening.
A few silent minutes later, I received a response from a woman whom I’d never met. She told me that she was also sitting up watching a blood sugar that she didn’t quite trust. That was it really. We didn’t talk much or offer one another solace. It was sort of a, “I’m here doing this thing and it’s getting the best of me.” And a reply that basically said, “Me too.”
I closed my laptop, the abyss of the night enveloped me and I began to sob tears of relief.
I was buoyed by the notion that there was another person in the world that was doing what I was and suddenly everything felt better. I learned that night that it isn’t the diabetes that made me feel alone and it wasn’t the darkness that caused me to want to reach out; I was being oppressed by the feeling that no one understood our life.
And just like that, with a tweet, I found sameness with someone that I couldn’t see, hear or touch. My diabetes community expanded. No longer would I have to wait for a JDRF walk to talk to a person who understood my life. Supportive glances, understanding words and the satiation that sameness brought, they were all I needed to feel recharged. Support came that night, but not in the form of mentorship or advice. This wasn’t a plan for counting carbs or talks of how to best prep a pump site. It was simple, beautiful and kind. A brief encounter with a person who had walked in my shoes and reassured me that I was not alone.
I’ve learned diabetes jargon, gathered information about insulin pumps, medications and ways of handling type 1 diabetes from the diabetes community. They’ve taught me with their openness to be comfortable with others being my rock when I can’t do it for myself. With the help of these wonderful new friends I began to see a light at the end of a tunnel, I was beginning to believe that it was possible for us to find our way back to feeling normal.
Read 'The Importance of the Diabetes Community Series
Part 1: How it Saved Our Family
Part 2: Currently Reading
Part 3: Coming in April
Part 4: Coming in May
Part 5: Coming in June
Feel what it’s like to wear the OmniPod – with no obligations. Click here to order a free Demo today.
The Importance of the Diabetes Community
For those of you who are new to Arden's Day...
I do a little freelance writing some times. Once a year I write a series for Insulet, the company that makes the Omnipod insulin pump. It is no secret that when I'm paid to contribute articles the company paying me is hoping that my blog readers will checkout their blog, site, products etc. Hopefully they also like my writing, but I digress.
When I negotiate my writing contracts I always push to be able to repost what I've written here on Arden's Day. There are two reasons for that. 1. I don't want you to feel pressure to visit another site and 2. I don't want to hand in less than my best work in an effort to keep the 'good stuff' for Arden's Day, and for you. This way it's all the 'good stuff' and you can read it where you'd like. Alllllllll that said, this is the first in my five part series on the Diabetes Community. It ran on Insulet's Suite D blog one month ago (I have to wait a month to post here). Part 2 is up now on their blog as well, you can read it on Suite D or wait until next month and I'll repost it on Arden's Day. One last word on this. While I am paid to write for Insulet, it's not nearly as much money as you may be imagining and besides, there is no amount of money that could make me pass information or sentiments to you that are anything less than my 100% real feelings and experiences. This blog, our community and the responsibility that I feel toward you all means too much to me for anything like that to every happen. I just love the Omnipod and am happy to tell people about it. And you know what? Good on Insulet for letting me repost here, they couldn't have been thrilled when I made that request.
Part 1: How it Saved Our Family
When my daughter Arden was diagnosed with type 1 diabetes in 2006, our family was violently thrown into a world that we didn’t understand. The days, weeks and months that followed were full of endless sadness, fear and moments that hindsight would later tell us we could have handled much better.
I’m choosing to share my largest diabetes misstep from that time in our lives, because it led me to what may be the most valuable discovery of my adult life. This is part one of my five-part series about community and how it will save, support, teach, improve and transform your life with diabetes.
I should have sought out other people who understood our struggles, I should have found community. Too many of the decisions I was making were informed by speculation that was fed by an often self-imposed and largely unnecessary fear.
What I needed was support and wisdom, but instead I hid from the world and, in doing so, created a vacuum that was not conducive to living well. Had I found other people living with diabetes sooner, they could have shown me what I now know, but took much too long to discover.
Arden and Kelly at our first JDRF walk, two months after diagnosis.
My first experience meeting other people from the diabetes community was at our local JDRF walk. The walk we attend goes through a park full of winding paths, steep hills and majestic scenery – countless thousands of people all moving forward in love and support of one another.
At some point during the morning Arden needed insulin. We had just stepped off the path so others could pass when I realized that pausing our life to give Arden insulin didn’t seem in any way noteworthy to the people passing by. And then it hit me.
Everyone here has or loves someone who has diabetes. They don’t look scared and their faces don’t reflect the sadness that I feel. We were suddenly and beautifully surrounded by people whose lives weren’t being defined by diabetes. It was right then that I began to believe that diabetes wasn’t always going to permeate every second of our lives.
To this day I believe that the most beneficial aspect of what the JDRF provides is the opportunity to find sameness. If those walks didn’t produce a dime for research, I would still be there each year just to spend a little time around people who understand. Each year when I walk, my greatest hope is that someone who is feeling as I once did will see our faces and think, “I’m not alone. Those people look happy – we can be happy too.”
Community can take many forms and often the support you need can’t wait for a moment that can be found in real life – you may need the community to come to you. Luckily, the diabetes community is one of the most well-represented patient communities online. There are so many different ways to find kind, helpful and present people who would love nothing more than to help you believe that living well with diabetes is a tangible goal. These people have walked the path that you are on – they know the shortcuts. They write blogs, take the time to lend an ear on forums and give their best advice on Facebook pages. You haven’t been hugged until you’ve been hugged virtually by a stranger whose only desire is for you to not feel alone. Now that’s support!
Read 'The Importance of the Diabetes Community' Series
Part 1: Currently Reading
Part 2: Finding Support
Part 3: Coming in April
Part 4: Coming in May
Part 5: Coming in June
Feel what it’s like to wear the OmniPod – with no obligations. Click here to order a free Demo today.
Video: Sierra Sandison on Dr. Oz #ShowMeYourPump
Sierra Sandison became Miss Idaho 2014, dreamt up the viral hashtag #ShowMeYourPump and is competing to be Miss America – all with her insulin pump clipped at her side.
Now she's on the Dr. Oz Show showing her pump to his audience and making every person with diabetes about as proud as can be.
I first met Sierra in July when I interviewed her about the events that led up to her #ShowMeYourPump tweet; which inspired people everywhere to share photos of themselves with their insulin pumps. During our conversation I learned about McCall Salinas and how a talk that she had with Sierra led to the Miss Idaho wearing her insulin pump on stage.
The Miss America Pageant is on ABC Sunday at 9 pm est. The top 15 contestant make it to the live stage and I'm hoping, as I imagine are all of you, that we see Sierra show her pump Sunday night on national television. Good luck Sierra, the entire diabetes community is behind you!
Arden's Day of Diabetes: #DayofDiabetes
Around a year ago the JDRF did this cool thing where people could sign up for text alerts that were meant to simulate having diabetes - so people could understand better the relentless nature of living with type I. I loved that idea, but how could I not? That's exactly how I started Arden's Day.
Six months ago some wonderful folks did it again on Twitter using the hashtag, #DayofDiabetes and I loved the idea even more (Twitter is perfect for this) and participated in the event. Those same people brought up doing it again today - I'm in.
I'll be tweeting, Facebooking and refreshing this blog post all day whenever diabetes requires interaction. I wonder what kind of day with diabetes this Day of Diabetes will be?
Midnight: My day with diabetes began around midnight when a late evening bolus just would stop. Managed temp basal rates to get Arden's BG to 110.
4 AM: Up again to set more decreased temp basals. Finally gave up around 5 AM and gave Arden some juice (1/4 of a box) . Ended up staying awake because the juice wasn't working. Of course, the juice I added at 6 AM ended up being too much - figures.
7 AM: Up for school and now blousing to stop the BG rise from the second juice sips. CGM now 160, arrow straight up. Juice sips worked too well!
7:50 AM: Replaced juice box in Arden's bag (Used it last night for a low during softball pitching practice), set a timer for 45 minutes on her phone. Going to try and eliminate high BG (190 CGM) before school snack at 9:30 am.
8:28 AM: Blogged about diabetes
9:07 AM: Just texted with Arden, need her to test her BG. She told me to "wait five minutes" apparently they are in the middle of a contest. #DayofDiabetes
9:30 AM: Arden and I texted for her school snack. BG was 190, stubborn this morning. We boluses for 30 carbs. I asked her to test, she wanted to bolus from CGM. She said, "Fine I will but if they match I will poop on you" - I hope she meant the emoticon. They matched BTW.
11:00 AM: Lunch time text.
1:48 PM: Post Gym #CGMnow is 97. Temp basal off for 30 min and a few carbs should hold it there. We’ll see. #DayofDiabetes
2:30 PM: Arden will be home soon. Time to pack a bag with supplies so we can go watch her brother play baseball for the school team. I don't remember what it feels like to run out the door with just my wallet and keys. #DayofDiabetes
3:16 PM: So the one day I try to outsmart an after school drop in BG... diabetes does the opposite. 185 and creeping up. Damn
5:07 PM: Some mini muffins will stop the bg fall. Only bolusing for half. #DayOfDiabetes
6:30 PM: Made a wild guess about dinner carbs on the way to a restaurant. Needed the pre-bolus time to work on a slightly elevated BG. I won't know hoe well I guessed for about 90 minutes.
Day Of Diabetes: World Diabetes Day Edition
Six years ago I began this blog with the intention of sharing every diabetes related moment that happen to us over a twenty-four hour period. I planned to share our day with diabetes with my friends and family but didn't have one idea about what I was going to do after that day ended. I had never read a blog, didn't know another family who lived with type I diabetes and only ever saw two message boards in the Internet. I had no idea what my sharing would introduce me to or what meeting all of you would one day mean to me. So many diabetes related events happened in the first few hours of August 16, 2007, that I had to stop before the day was over - but that was on my first day.
Today, I think I can make it for twenty-four straight hours... One full day of sharing to help bring awareness to the the world of type I diabetes. Every moment of our World Diabetes Day that is touched by type I diabetes, I will share as an update here on Arden's Day and other social media portals that lend themselves to the moment. Twitter, Facebook, Instagram, Tumblr
If you want to follow along or share the posts, I'll be hashtaging them with #DayOfDiabetes - Many other DOC members will be doing something similar today, please support them as much as you can. Here we go!
#DayOfDiabetes - Just 39 minutes in and diabetes is already making noise.
#NDAM #WorldDiabetesDay
3hrs 30min since snack time insulin. Going to wait up a little longer. Tonight may just go well. #dayofdiabetes
1:33 am. Arden's BG is drifting lower. Temp basal, off for 30 mins. I'll listen to some music and check again in 30 mins. Eyes starting to hurt.
BG is steady at 95. One last temp basal, off to sleep. now. getting up in 4hr 45min. #DayofDiabetes
I overslept. Sometimes staying up until after 2 am can do that to me. Was woken finally by Arden's DexCom. Not only did her BG slowly drift to 196 by 8am but it wanted me to know that the sensor needs to be replaced in four hours. Thing is, we use that sensor to get through the school day. Going to have to reset it and set timers for extra testing.
Arden couldn't take her chewable vitamin this morning because her BG was 200 and they are 6 carbs, would require .45 units of insulin and hinder the bolus that is working for the elevated BG - vitamins. #DayOfDiabetes
Currently trying to decide what caused morning rise.#dayofdiabetes
The popcorn Arden ate before bed resolved almost perfectly. I set a decreased temp basal at 1am that seemed to work (Happy enough with the 150 range). Guessing the AM rise was not due to temp basal at 1am. If I hadn't overslept I could have boluses it just as it began and I think the 8 am number would have been around 140ish.
Timer just sounded. Arden will be testing in class and sending me a number in a moment. #DayOfDiabetes
Working on high BG from AM & getting ready for snack.#dayofdiabetes
On the phone with DexCom to deal with transmitter battery message. #DayOfDiabetes 10:28am
Arden just texted, CGM is ready to calibrate. She is testing now. #DayofDiabetes
I’ll have a #Dblog up in 20 mins about the last 1/2 hour. edit: Here it is LINK
#DayofDiabetes
Arden is at lunch, CGM is back and new DexCom transmitter has been ordered. This looks like a safe time for me to take a shower. #DayofDiabetes
Post Gym CGM check 97. #DayofDiabetes
I just entered Arden’s post gym BGs in the #BigBlueTest #DayOfDiabetes
Arden is on her way to the bus port. Just sent her CGM, we made an adjustment/bolus and she will be home soon. #DayofDiabetes
CGMnow 90 mins after Chinese food, 84. Small snack going in. #DayOfDiabetes
Arden is in bed, had to bolus again for an elevated BG. I’ll check on her in a little bit. #DayodDiabetes