Spotlight: Type 1 Diabetes Community on Facebook
One of the goals of my (and many other diabetes bloggers) advocacy is to bring the community, comfort and guidance of the Diabetes Online Community into the real world - because not everyone is online but everyone should have the ability to find others who understand their lives with diabetes.
During the recording of episode #23 of my podcast I asked Jack's Mom and Dad about the guidance that was provided to them at the hospital during their son's type 1 diagnosis. I was thrilled to hear that insulin pumps and continuous glucose monitors were on the menu but I couldn't quite believe my ears when Beth told me that their doctors recommended a Facebook support group. My heart leapt and I instantly thought of Cherise Shockley the founder of DSMA... she is always talking about bringing the goodness of the online community into the real world. Looks like it's happening and wait until you hear how that advice has benefited the Tran family.
Below is some information on the Facebook group that Jack's parents are members of and an inline player that you can listen to their podcast episode with... you can also listen at iTunes, Stitcher or on your favorite podcast app.
A little history from the TOFN founder, Alison Zettle:
"TOFN- is for parents(grandparents) of school-aged children or younger with type one diabetes living in Texas. The parents wanted to keep the topics focused on kids issues and not adult issues. We have three networks TOFN-North Texas, TOFN-Central Texas and TOFN-South Texas which includes Houston.
How it started: Andrew was dx in March 2010. I was so overwhelmed and I felt so alone. I read and read and read and I kept coming across the statement made by adults with type one "I felt so alone and different as a child". That broke my heart and I knew that in today's day and age our kids did not have to live/feel like that. We have to be aware the mental strain of having type one as well as the physical one.
I knew there had to be other parents living near me that had a child with type one. I wanted to meet them and learn from them and have Andrew meet other kids living successfully with type one. But no one could give me the names of anyone living with type one near me due to HIPPA laws. So I decided to create a local network so that parents and children could meet each other , learn from each other and support each other.
TOFN works closely with JDRF and the local children's hospitals. It took a lot of work to get it going but Andrew and I wouldn't be were we are today without the support of all our fellow D mom's and dads. The reason TOFN is so successful is because the TOFN members themselves. Someone is always there day/night to give you a much needed virtual hug or a "way to go"! I hope TOFN has made a difference in many families lives as it has certainly made a difference in mine."
Social Media is Amazing (and so are you!)
Follow the Butterfly...
One June evening Arden walked into our living room and commandeered our TiVo remote. As she settled into our sofa she announced, "The softball World Series is on TV"... we all sat together and watched Alabama take on Florida.
Follow the Butterfly...
One June evening Arden walked into our living room and commandeered our TiVo remote. As she settled into our sofa she announced, "The softball World Series is on TV"... we all sat together and watched Alabama take on Florida.
The next day I received a Facebook message from an Arden's Day reader telling me that Alabama's catcher, Molly FIchtner, has type I diabetes.
That message prompted me to reached out to Molly on Twitter the next day, I asked her if she would be interested in doing an interview with me for Arden's Day and Huffington Post Sports.
A few days later Molly and I spoke on the phone where, for over an hour, I found Molly to be inspirational, clear-minded and in possession of a drive that one doesn't often come across. I immediately sat down to write her story and posted it on Arden's Day the very next morning, Huffington Post Sports followed a few days later.
Molly's story received thousands of Facebook shares and likes and hundreds of tweets were sent from people who wanted to spread the word about Molly. In the diabetes community, the JDRF tweeted, as did The Joslin Diabetes Center and countless people who live with diabetes. In kind, the softball community got the word out too. Players, colleges and travel teams alike all spread the word about Molly. The NCAA even sent a tweet that included a photo of Molly, complete with a quote that she gave me during our interview. - "Be determined to take your ability as far as it can go."
Molly
Then yesterday I received a new message on Facebook, one that delighted me and showed the power of community, positive influences and the power of sharing online. The message was from a mother who's child does not have diabetes, she told me that her daughter's softball coach recently emailed his entire team a link to an interview that he wanted them to read... My interview with Molly.
I'm proud to be a diabetes blogger, and I'm touched that you all take the time to read and share. I wanted you to know that your participation in our community does more than just help you and your family. You are part of something that is much larger, an interconnected process that is bringing hope, relief and guidance to families just like yours and mine - and beyond.
Have a wonderful weekend!
My best,
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
'Like' Arden's Day on Facebook
'Likeing' Arden's Day on Facebook is a great way to make sure that you never miss a blog post, picture or giveaway. If you love the blog, you'll 'Like' the blog on Facebook. See what I did there? Now, you don't want to miss out on more magical word play like that do you? ;)