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."
Guest Post from Teddy's Mum
In a recent Juicebox Podcast Scott Benner said he wanted his daughter to ‘be herself as much of the day as possible’. That really struck a chord with me.
I want you to be yourself...
I just want him to be normal. I thought this over and over again during the first few months after my son’s diagnosis. It is very hard to accept that your child has changed forever. I grieved the loss of his carefree childhood. I felt over-whelmed by the responsibility of keeping him alive. He was three and he was our angel.
EVERY MINUTE of EVERY DAY we try and keep our son’s blood glucose as close to normal as possible. Teddy is now seven and his HbA1c is low enough that most of the time I am able to brush away dark thoughts about his long-term health.
I just want him to be normal. I still do. I want him to be himself and FEEL himself. I look at Teddy’s BGs and each number makes me wonder how he feels inside.
A low number can make this sweet natured boy become bad-tempered and rude, clumsy and sad. He drops his finger-pricker when I ask him to test. How does Teddy feel? Is his reality skewed? He is not himself. He needs sugar.
With a high number I sometimes see Teddy staring into space. He doesn’t listen to me. Can’t concentrate. He can be unhappy. I imagine the sugar pumping through his veins making him feel sluggish and his senses less sharp. He is being poisoned. Water. Give him water, and insulin of course.
Teddy
Recently at school Teddy was told off for shouting out in class. He started to cry. He cried and cried and said he wanted to go home. His carer realised that his blood sugar was quite high. Maybe this caused him to shout out. It was out of character. They couldn’t stop him crying and all the time his blood sugar was rising because he was distressed and this was making him cry more. They felt really bad for him and took him for a walk outside and gave him computer time to cheer him up. At the end of the school day his eyes were still puffy and red. We all learnt a lesson from that day.
For the last 4 weeks things have been good with Teddy’s BGs. Lovely Dexcom graphs lower my stress levels. But I have noticed his mood swings and behaviour changing with lower highs and higher lows as if he has become more sensitive to being out of range. I work all the time at keeping him in range. I feel so responsible for changes in his character and behaviour that may be caused by lows or highs. When he is yo-yoing I can’t imagine how he feels in his mind and body. But my little boy is amazing as he always bounces back to being his gorgeous sweet happy little self.
Anna Hutton - Teddy's Mum
Anna was a recent guest on my podcast... You can listen here.
I Can: A Diabetes Blog Week Day 1 Post by Nicky Gil
Nicky Gil is thirteen year old Ainsleigh's mom... Nicky wanted to write for blog week and tell the story of the fear that she felt as she contemplated meal preparation during the first days of her daughter's diagnosis with type 1 diabetes. Her words really get to the heart of how a type 1 diagnosis can make a person feel.
I can make eggs 10 different ways...
I can make eggs 10 different ways. Just ask my daughter. That’s all she ate in the first few days after diagnosis when my refrigerator became this vast, cold box of completely forbidden and potentially deadly foods; but eggs, the “incredible, edible” were warm, filling and safe. We’d had nutrition training the first week of diagnosis. We’d met with the dietitian, the endocrinologist, multiple nurses – all sources of solid, reliable dietary guidance; this was not the issue – fear was. I would stand in my kitchen at mealtime, paralyzed that my wrong choice would cost her a leg, a kidney, her eyesight, her life. I wasn’t ready risk it for the sake of a piece of toast. Eggs! Eggs were safe.
hypoglycemia, hyperglycemia, bolus, basal, diabetic ketoacidosis,“carb to insulin” ratio
The eggs weren’t the only scrambled things those first few days. New vocabulary bounced around my brain in no particular order - hypoglycemia, hyperglycemia, bolus, basal, diabetic ketoacidosis,“carb to insulin” ratio - flashcards wouldn’t have been a bad idea. Meal creation was too daunting a task, I thought, given my limited knowledge of what was “safe.” Thankfully, our diagnosis occurred in the summer, when I had access to a carton of eggs and a stove all day long and mercifully didn’t have to contemplate meals beyond the house just yet. Perhaps, this would have nudged me to conquer my fear a couple days sooner and saved my family my unfortunate foray into poaching – perhaps.
My daughter took her reduced option menu in stride as, I’m sure, my confusion was nothing compared to hers. Overnight, her world had completely transformed. The pantry during the summers her first eight years was an open door – stocked (somewhat) nutritionally as the hours between a prepared breakfast and a prepared dinner were much more free flowing than during the school year. Our pantry might as well have had an armed guard standing next to it the first week of diagnosis; it was right up there with the refrigerator in terms of its standing as a weapon of mass destruction. In addition to her now (severely limited) food choices, we kept coming at her with small needles a few times a day and sticking them into her fingers and slighter bigger needles at mealtimes and sticking those into her stomach. And we were full of (misguided) directions those first few days – no soccer, no ice cream, no sleepovers, drink this, eat your eggs.
Nicky Gil
It took three days for my daughter to decide she’d had enough. As I approached with the needle, my shaking hand not very reassuring despite her telling me in exasperation multiple times, “It doesn’t hurt,” she took the insulin pen, looked me in the eye and said, “I’ll do it!” Three days. She’d had enough. She’d was growing weary of fear – mine and hers. I followed her lead, albeit a little more slowly. She seized control of her situation in three days. I branched out to toast with the eggs a few days after. She learned to prick her own finger and I began to mentally unlock the pantry and the refrigerator. As she learned to cope, I learned to manage my anxiety.
Four and half years in and I’ve just picked up a package of double stuffed Oreos at her request. Funny, this isn’t something I would have given her pre diagnosis but, now, I fund the rebellious cookies. She’ll carb count, she’ll program her pump, I’ll advise against more than one. Our meals now include a variety of foods, most healthy, some not so healthy. She ice skates daily, she goes to sleepovers (and texts me her numbers religiously if she wants to be allowed to go to the next one), she packs her lunch bag. We worked our way slowly out of our first protein packed, miserable days. We fought fear in our own way that first week, now we fight diabetes together, daily.
Ainsleigh still eats eggs...
Nicky Gil - Mom of Ainsleigh Gil, age 13
Richmond, VA
Remember, anyone that wants to write for blog week and doesn't have an outlet for their words only needs to email me - I am happy to give your writing a home. - Scott
Sometimes Your Blog Makes Me Feel Like a Failure
A long time ago on a blog far far away lived the father of a little girl who has type 1 diabetes...
Many years ago during a conversation with a fellow diabetes parent named Michelle I learned something about my blog that I was painfully unaware of... "Sometimes", Michelle told me, "Sometimes your blog makes me feel like a failure". This was of course, not my goal.
I was crushed because it wasn't Michelle who failed, it was me
Michelle and Mason
Michelle went on to share with me that while she enjoyed Arden's Day and found it to be refreshing and honest, it felt like my writing focused more on what went right with diabetes and in fact that the lack of relatable 'diabetes fail' conversations left her feeling as if everyone was 'succeeding' but her and that she was failing her son Mason.
I took her words to heart
I spent the next few days rereading my own blog and I could see what Michelle was talking about. I wasn't purposely just talking about the 'good stuff' but my attempt to be positive for the community was definitely coming off slanted in that direction. So I changed how I share online with Michelle's brave words as my guide. The adjustment was difficult in many ways but also incredibly rewarding. Anyway, that was a long time ago and today I pride myself on how honest and completely transparent this blog is - Not only is Arden's Day now a complete reflection of my life with type 1 diabetes but I've seen the power of sharing the good and the bad and how it has helped to buoy other families in their times of trouble.
I owe all of that, to Michelle Golladay and she is this weeks guest on the Juicebox podcast.
As you listen to Michelle and I talk about parenting and diabetes she'll spend a few moments telling me about a Parent Advisor Program that she has helped to set up at the Akron Children's Hospital - bringing the DOC IRL! I've included links here and in the show notes of the podcast, local Ohio residents and those interested in learning more should check them out.
You can listen to our conversation right here with the embedded player, on iTunes, Stitcher or your favorite podcast application.
Inspired by Conversation
I enjoyed having Kristina and Greg on my podcast so much that I asked them if they'd be interested in contributing a blog post to Arden's Day. It suffices to say that the topic Greg chose to write about warmed my heart! After you read his piece you can listen to their episode with the link below on iTunes, Stitcher or via the player that I've placed at the end of the blog post. Enjoy! - Scott
Time to Get More Aggressive!
Last week, my wife, Kristina, and I had the great pleasure of being featured on the 9th episode of the Juicebox podcast. It was a lot of fun and we both loved listening to it!
For parents of a child with type one diabetes, it’s fairly common for one parent to assume the majority of the diabetes management responsibilities. In our case, we pretty much split the duties (although, in full transparency, my wife does way more than I do!). We thought this would make for an interesting and entertaining discussion. When Kristina pitched the idea of an interview to Scott Benner at the Juicebox Podcast, it went like this….
“We'd love to be a part of one of your upcoming podcasts! Not sure if you've had any D-mom/D-dads reach out as a team to chat with you but we thought it might be fun. We have VERY different styles of managing Isabella's diabetes but it works.”
But, I’ll be honest; the podcast was completely Kristina’s idea and I really didn’t have much of a choice in the matter. My wife is extremely outgoing (understatement?) and jumps at the chance to speak in public forums. I, on the other hand, have always been a bit more reserved and would prefer to avoid being the center of attention, if possible.
So, for me, the thought of being interviewed is somewhat anxiety-inducing from the start and more so when my wife informs me that the interview very well may include some “newlywed style” questions to see how well we know each other. While I think know my wife very well (for years she has been preparing me for the off chance that we might someday appear on a famous live TV game show….I can’t count the number of times I’ve heard ”honey, remember this for when we’re on the game show!”), needless to say I started to get slightly nervous.
Kristina went first while I sat in the other room pretending as if I was completely calm, cool and collected and not at all anxious about the interview. All I could hear was Kristina’s muffled voice followed by her seemingly uncontrollable laughter, most likely telling one of her favorite “Greg stories.” Oh boy. Here we go…
It was finally my turn to join in on the fun. Scott immediately made me feel at ease; my nerves started to melt away and I actually started to enjoy myself. We spent quite a bit of time talking about the team-based approach that Kristina and I use for managing diabetes, which works very well for us.
While Kristina and I do act as a team, we have quite different approaches in the way we prefer to manage Isabella’s diabetes. Kristina tends to have a heavier hand with insulin (often generously “rounding up” carb counts), which helps to avoid highs. I, however, prefer to take a more conservative approach with insulin to avoid very low lows, especially overnight. The thought of what could happen to Isabella as a result of too much insulin absolutely terrifies me.
Scott seemed to be intrigued by the fact that we work as a team but with very different approaches. As a veteran type one diabetes parent, Scott shared some stories about his approach to managing diabetes. He talked about how technology, especially Arden’s Dexcom CGM, has enabled him to get comfortable with taking a very aggressive approach to insulin. This approach has led to very tight control (I still can’t believe Arden’s last A1C!).
This part of our talk really hit home.
While I’ve known that getting a bit more aggressive with insulin is likely to lead to better outcomes, I am completely terrified that I might kill my daughter with too much insulin. Our conversation helped me realize that I need to get over this fear. We have amazing technology at our disposal (including Isabella’s brand new Dexcom Share2, which is an amazing game-changer in my book!) that I can more fully leverage to help me get comfortable with becoming more aggressive with insulin, which will ultimately result in lower A1Cs, better overall control and a healthier little girl.
After finishing the interview, I believe one of the first things I said to Kristina was, “I’m gonna get more aggressive!”
It’s time to get over my fear. Thanks, Scott, for pushing me over the edge.
Greg Dooley
InspiredByIsabella.com