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
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
Diabetes Blog Week Day 1: I Can...
I can...
Diabetes Blog Week begins on Monday, May 11 and runs until May 17. The day one writing prompt is, "I can...".
I realized last week while talking to the creator of Diabetes Blog Week, Karen Graffeo for the Juicebox Podcast that I can help people in the diabetes community that want to share their thoughts during blog week... but don't have a blog.
With that in mind - If you are a person who lives with diabetes, or you love someone that does and you don't have a blog... I'm excited to offer Arden's Day as a way for your words to find their way into the community.
If you are interested in publishing your diabetes blog week writing on Arden's Day contact me by email and we'll make arrangements for your post to be featured during blog week.
I can help the diabetes community to grow...
My conversation with Karen Graffeo is available now on the podcast. You can listen to the Juicebox Podcast here, on iTunes or with your favorite podcast app. Karen's episode started out as a conversation about Diabetes Blog Week but quickly grew into a discussion about what it was like to be a child with type 1 diabetes over thirty years ago. I think you'll love hearing Karen talk about growing up with type 1 diabetes, how she imagined blog week and much more.
Share your life with diabetes today. Your transparency will help others in ways that you can not imagine. You can find out more about blog week and add your name to the participant list here.
Rainy Days and Mondays have nothing on Diabetes
The topic for day three of Diabetes Blog Week is 'What Brings Me Down'...
Check out all of the entires for Diabetes Blog Week
My 'What brings me down' post is based on the last twenty-four hours...
It brings me down when diabetes causes the rest of my life to get put on hold...
It brings me down to have to call the parent of one of Arden's friends to explain diabetes...
It brings me down when they don't seem to understand...
It brings me down when I find myself speaking, about the things that person will need to do if Arden is to attend an event, in an apologetic tone...
It brings me down when I realize that the weight of my message wasn't felt...
These things bring me down because it is completely understandable that a diabetes novice wouldn't understand.
It brings me down that Arden's diabetes technology always seems to provide a let down in these situations...
It brings me down when a pump site fails at the most inopportune moment...
It brings me down that the time I was trying to spend with my son got cut short because of the site change...
It brings me down when I have to change a pump in a car...
It brings me down when I have to inject because the pump site failed...
It brings me down that it feels like every time a DexCom sensor fails to keep up with Arden's BG, it's during a moment like this...
It brings me down when I think I'm fighting with a stubborn 200 BG and it's really 430...
It brings me down when Arden doesn't feel well because of that 430...
It brings me down that in the middle of writing this I'm texting with Arden about a rising BG...
It brings me down when Arden feels sick from her BG while she is trying to play softball...
It brings me down when my wife texts me to say that she seems to be struggling because of it...
It brought me down that I wasn't there...
It brought me down when it took me too long to mentally get back to my son...
It brings me down when my wife called me as I was coming home to tell me about a bad BG incident that happened while I was cheering at a baseball game...
It brings me down when Arden is unsafe...
It brings me down when her BG drops so fast...
It brings me down when I look in my wife's eyes as see tells me about it later...
It brings me down to see my family sad...
It makes me happy to write about it here.
Because today is a new day.
Because everyone is fine.
and will be fine.
It's makes me happy to tell you that this was just a bad day, just an unlucky collection of coincidences...
Diabetes can bring you down sometimes but there is no rule about how long you have to stay down. In many ways living with diabetes is like the graph on your CGM screen. Steady mostly, with down and up moments. Some highs last longer than others, some lows hit you hard and some come and go. I guess that most everything in life could be described with those words.
#DBlogWeek