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
Keep it to yourself: A Diabetes Blog Week Day 2 Post by Kelly Griffin
I put out the word on episode 15 of my podcast... If anyone in the diabetes online community didn't have their own blog and wanted to participate in Diabetes Blog Week, I'd host their blog post here on Arden's Day. Almost immediately, Kelly Griffin emailed me to say that she wanted to contribute a post. Initially Kelly considered writing anonymously but late yesterday she decided to not just attribute her name, but also her face to her writing. Kelly may not have been completely "out of the shadows" when she wrote this blog post... but she certainly is now! Please help me welcome Kelly into the light... - Scott
Keep it to yourself...
Thank you, Scott Benner and Karen Graffeo, for giving me the opportunity to write about a topic that seems to define my life with type 1 diabetes. To give a brief history, I was diagnosed with type 1 diabetes about 13 years ago. It was a puzzle to my doctor at the time, who assumed because I was in my mid 20's, I must have type 2. It was actually the CDE (Certified Diabetes Educator) who determined that I was mostly likely a type 1 in a “honeymoon” phase. She turned out to be correct, and I quickly found an endocrinologist who helped me move to MDI.
That was a time of significant transition in my life. I had been a professional student since undergrad, and was about to move to New York City to pursue a performance based career. When I shared my diagnosis with some people in the industry, I was quickly told to keep it to myself. They cared about me, and worried I might be looked at differently, or miss opportunities because I would be perceived as ill or somehow incapable. I didn't question it. Be it right or wrong, that was the way it was, and I adhered to that. I worked very hard to make sure that no one knew about my type 1.
I spent my whole life studying and preparing for this career, and I couldn't let my diagnosis become an issue now.
Since diagnosis, I have been in pretty tight control of my diabetes, but at one visit I expressed frustration to my doctor about the amount of injections that I was giving each day, and that it was becoming harder to explain my trips to the restroom before every meal. For years, my endocrinologists have wanted me to be on a pump, but I refused because I couldn't image how in the world that would work in a quick costume change backstage. I could have several people helping me in and out of complicated clothing. Where would the pump go? How could I do this so that they wouldn't know?
Now that I think back on it, that was my first glimpse into the DOC (Diabetes Online Community). I found forums of people talking about this “tubeless” pump. I started looking into it, and thought that might just work. I could easily hide it under a camisole while in a stage production, and no one would ever know. So, I started pumping with the OmniPod about 8 years ago, and have been using it ever since.
Secrecy has its burdens.
Kelly Griffin
The longer I live with T1D, the more I feel the need to talk about it with someone. I need community. When you are diagnosed as an adult, you never have the experience of anyone else taking care of you. I know this is naïve, but I sometimes envy hearing about people diagnosed as children. I wish that my family knew what I deal with on a daily basis, and how hard it can be to stay in control. I have been the only one in my world who knows what I am going through.
It was 13 years before I met another person with type 1. I actually saw an article about this woman in a local publication, and semi-stalked her on Facebook until we were able to meet for coffee. It was the most amazing experience to sit down with someone who pulled out a pump that was “alarming” during our meeting. I am not the only one? So, I'm not the only one who sits with one arm digging into my abdomen for 3 hours in a live theater performance trying to muffle the sound of my pod beeping away? I'm not the only one who tries to discreetly light up my Dexcom screen in a movie theater to check my numbers? I'm not the only one who sits in fear of my Dexcom vibrating during church every Sunday?
That meeting was so incredibly freeing, and it left me wanting more connection. I quickly delved into the DOC at that point. I found Scott Benner, Diabetic Danica, Kerri Sparling, and Cherise Shockley, to name just a few. Most of these people have no idea who I am, but I feel like I have community through their efforts, and I cannot express my gratitude enough. I am amazed at the strength I see in the DOC. The women, men, and children, who proudly display their pumps with or without tubing, check their blood sugars in public places, and post online without reservation or worry about what their professional colleagues might think. Those of you living boldly and out loud, inspire me.
I am choosing to walk out of the secrecy a little bit at a time. I'm not completely out of the shadows yet, but I'm working my way there. I see that I have to be bold if we're ever going to find a cure. I have to find a way of being comfortable speaking up. This is my first step, and I thank you for the opportunity.
-Kelly Griffin
What a wonderfully honest and brave post from Kelly - bravo!
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
The Art of Dana Lechtenberg
The internet is a magical place for so many reasons, here's one of them...
I listen to a number of podcasts and one day I was drawn to purchase a t-shirt from one of them, a show called FEaB (Four Eyes and a Beard) starring Matt Mira from the Nerdist Podcast and Scott Mosier from Smodcast with director Kevin Smith.
Hold tight this gets interesting quickly.
So I buy this t-shirt and wear it at least once a week because I love the design. Months later on a Friday evening I see a tweet from Scott Mosier congratulating someone named Dana Lechtenberg for winning an award for his art, the accompanying image in the tweet reminds me of stuff I've seen elsewhere online.
I click...
It turns out that Dana's album design has won an American Advertising Award, and with that I fall a little bit further down the digital rabbit hole that is the art of Dana Lechtenberg. It isn't long before I realize that this might be the person who designed my beloved FEaB t-shirt. My interest is thoroughly peaked, and I begin to devour Dana's art on his website.
I soon find that aside from creating art for podcasts like FEab and Nerdist, Dana is an accomplished artist and advertising designer and I just can't get enough of what he does. Before I know it my family is in bed and I'm about to do something a bit crazy.
Somewhere between being enveloped by the warmth of his Fantastic Four piece and my instant love of his use of color, shading and dimension - it hits me why I'm so drawn to Dana's art...
It reminds me of my banner image on Arden's Day...
Arden is good sport about having her picture on the top of a website that a lot of people see but once in a while she makes a request for me to find a new image - seems that she doesn't like that she is so young in the picture. I've been promising her for months that I will find a way to replace the image but have asked her to understand that after eight years, it's become more of a symbol than that of a picture. She understands. If I'm being honest I've been in a small, but constant panic about how to replace the image, stuck between wanting to honor Arden's request and not knowing how to do that.
My love for Arden and desire to fulfill her desire led me to do something that I wouldn't normally do, I wrote to Dana and asked him if he would consider designing new images for Arden's Day and the Juicebox Podcast - here's where the Internet can be magical... he said yes!
Very soon the man behind all of the images that you see here and more that you could see on his website, will be creating original artwork for my type I parenting blog and podcast. I could not be more excited to see what he comes up with! I told Dana that I feel like my image of Arden is what one of his pieces would look like if it came to life. His use of color, warmth, perspective and the feeling of texture that his work evokes - well, I am just beyond grateful for his kindness and simply can not wait to rebrand Arden's Day and Juicebox with his work.
How can it be possible that my blog and podcast will soon be adorned with the art from the same artist who designs for some of the biggest podcasts in the world? Easy answer, sometimes the Internet can be used for good. But I don't need to tell that to a bunch of people who use it in the way that we do. People living with type 1 diabetes know all about supporting strangers in need.
A huge thank you to Dana for his good will, Scott Mosier for his tweet and Kevin Smith for always encouraging folks like me to start a podcast.
The next episode of the Juicebox Podcast goes up tomorrow (Ep4. Texting Diabetes) and then there will be a special episode going up later in the week (instead of the following Tuesday), my interview with Ryan Reed, the 21 year old NASCAR driver with type 1 diabetes who just won the Xfinity race in Daytona. To not miss a minute, go to JuiceboxPodcast.com and subscribe now.
2014 Year in Review
It's December 31st and I've been spending a lot of time recently thinking about how to make Arden's Day better for you. As we head into the eighth year of my little blog's life I'm looking at ways to make the blog more informative, social, easy to consume and worth coming back to. In the process I've been reading a lot of old post from 2014 and found a few that are worth revisiting before the ball drops. I hope you read to the end of this long post, I'd like to share something very personal to me before the calendar flips.
From January 2014
It baffles me, but one of the most popular things on the blog this year was a photo of me looking tired, How to Spot a D-Parent. It was even reposted on Diabetes Daily and become one of their most popular post of the year. Of all the things I wrote, shared and talked about this year, you liked seeing me looking ragged the best. Tells me we are all pretty damn tired.
From February 2014
Dexcom was approved for pediatric use, one of my non D storIes blew up on Huffington Post and Miss Manners was all the buzz but all you guys wanted to see was pictures of Kris Freeman's abs. Parents still read this post every day when they wonder if their child is too lean for pumps and a CGM. Kris's abs turned out to be quite the public service.
From March 2014
My blog titled, Pitstop Fail won Best of Betes Blogs for March - a huge thank you to the person who nominated it and voted!
From April 2014
A Forgotten Wallet Buys a BG of 25 and I got yelled at a little bit in the comments. BTW, Kris Freeman could have easily been mentioned here too, you guys sure love abs.
From May 2014
I changed my expectations for what 'in range' means and lowered Arden's a1c, Living Between the (Diabetes) Lines.
From June 2014
June brought the lowest A1c Arden has gotten to date, A1c Countdown: It's Endo Time.
From July 2014
This was the month of #ShowMeYourPump but Arden's Day readers were more interested (By just a few hits) in Arden's Sudden Needle Anxiety.
From August 2014
In August I tried with all my blogging might to get you to believe that Diabetes and Fear don't have to go together, Guts over Fear was written, the hashtag #DiabetesandFear was tweeted and my quest was underway.
From September 2014
I traveled to the Dominican Republic to deliver a speech to a group of D parents during the summer but wasn't able to share the video of my talk until September. My time in the D.R. led to a very popular post, my first invitation to give a keynote at a JDRF event (Info coming soon) and a whole lot of new understanding about the rest of the world.
From October 2014
Hello Dexcom SHARE you are the remote monitoring I've been waiting for.
From November 2014
Arden changed her first OmniPod without any help from me while she was at a sleepover, I'll Take Insulin Pump Change for the Win Alex.
From December 2014
I shared our experience with getting an insulin pump in the hopes that it would give you the freedom to speak your mind because, Don't Let Doctors Push a Pump on You, that's why.
I can't thank you enough for reading about Arden's day. I hope you have time to check out one more post from 2014, it's one I wrote today about what diabetes blogging means to me, you can find it here. Have a happy, healthy 2015... you are all in my thoughts. Best, Scott
Best of Betes Blogs From 2014
Best of Betes is from Sara Nicastro and it is wonderful!
from Best of Betes Blog: Best 2014
"It’s that time of year again – we’re wrapping up the Best of the ‘Betes Blogs of 2014. I’ve visited the posts for all of this year’s hosts and compiled their lists of the best posts for this year. It was really interesting to look back at all the posts that have been written over this past year and see all the changes we have experienced.
[If I told you it actually took me HOURS to look up all the posts and write the code for all the links in all the categories, would that make you more likely to vote? Please vote!]
From now until 12:59:59 PM PST on December 31, 2014 visit the links below (all links open in a new window so you won’t lose your place!) to select your favorite posts from 2014. Then after the first of the year, we can see the Best of the ‘Betes Blogs of 2014 as we begin sharing about our meet-ups, d-mistakes, vlogs, advocacy, humor, and all the other best moments of the diabetes community in 2015."
If you want to read some of the best diabetes blog posts from 2014, this is the link for you. While you're there you can even vote for one in each category and help to decide the winners for 2014. No prizes go with the distinction... just a bit of bragging rights.
Psst... I won way back in March for a post by a Type Awesome (That's a D parent) for my blog titled 'Pitstop Fail' -- just saying ;)
But seriously, there is a ton of great writing and advocacy at this link, you'll be happy that you took the time to check them out here
