Living Between the (Diabetes) Lines
Three questions that every person living with diabetes asks themselves...
How high is too high? How low is too low? How do I find the balance between long-term complications and having a seizure.
Each of us has been given a range to aspire to. When Arden was first diagnosed, the doctor told us that we should be trying to keep her blood glucose value between 110 and 200 - "let's try to keep her A1C under 8.5", they said.
And so that became my goal.
Then one day they told us that we should lower the high range value to 190, at our next visit we agreed to try 185. The low range number was never touched. I understood what was happening even though it was never articulated to me, our BG goals were adjusting based on the vibe that our Endo got from us at each visit. She was evaluating our ability to handle spikes, lows, meals and overnights. I was being lovingly manipulated.
Then one day we discovered CGM technology and that little screen gave me something that I never had before, a visual representation of our goal. Now there was a line that I was trying not to cross. In the past when our goal was 190, 210 didn't seem like a huge miss and on the low end... even though we were trying for 120, 100 seemed so perfect that we didn't mind being a little low; besides many people, who don't have diabetes, regularly have a BG of 85 - of course they don't have man-made insulin in their system that doesn't know when to stop removing sugar from their blood.
I was living between the lines but I think the lines were holding me back...
I say holding me back because Arden's BGs were, for the most part, existing between them. I'm not talking about unforeseen spikes or unexpected lows. Highs and lows happen, you correct and move on, but you don't let them impact your impression of the graph. A few blips don't discount the rest of the day. Look at how the BGs are when you are blousing correctly, counting carbs accurately, when your basal rate is properly set. In those hours I was content if the graph line was mostly stable and in between 180 and 120.
It took me quite some time to figure this fact out, but the comfort that I felt when we achieved BGs that were between those lines, was holding me back from trying to do better. I had been lulled into a state of acceptance.
The lines were also providing a false sense of security. Even though they were arbitrarily set by a person that I only see four times a year, I was treating them like gospel. Finally I wondered, "if I can successfully keep a BG under 180 why could't I keep it under 170? Hell, why couldn't I shoot for 140?".
So I moved the line and do you know what happened?
I kept her BG under 160. Then I got brave and moved her low threshold to 100. Today, Arden's low alert sounds at 85 and her high is set at 160, but this summer I'm going to move that to 150.
All of this doesn't work if you punish yourself for going outside of the lines. I am telling you, do not do this if you can't handle seeing the graph climb above, or below those lines - don't add stress to your already stressful day. Before you attempt to move the lines you must find peace with being on the other side of them, you have to come to grips with the idea that nothing in life is controllable to that degree. Here's how I found my peace with that truth.
I was happy if Arden's BG was 180 all day because someone told me that number was okay. Her BG still spiked, it still got low but for most hours of each day her BG was 180. Today, most hours of the day come with a BG of around 140. She still has spikes and still gets low but most hours are spent in our new range. It took me a while, but now I can see, there is no difference in how I manage or what I do; the only thing that has changed is my expectations and the way that I react to them.
When I expected 180, I got 180. When I expect 140, I get 140. I'm learning to except 90... one day I'll learn to expect it.
When you're ready, move those lines... the ones on your CGM or in your log book, and the ones in your mind and heart. Expect what you want, except what you achieve and never stop moving the lines that life sets. Define your own reality.
Don't forget to read my disclaimer, I am not a medical professional and I am not dispensing advice... just telling stories on the Internets, the WWW, the information highway - you get what I'm saying. Please also don't forget that high and low ranges are never one-size-fits all. While Arden feels fine when her BG is 85, you or your child may not.
Ganémosle la carrera a la diabetes (Lets Beat Diabetes Race)
I'll be speaking in Santo Domingo, D.N. this weekend at the Ganémosle la carrera a la diabetes.
One goal, inspire and support people living with diabetes! @DOCIRL
Sing For Nicole
The world lost a beautiful person when Nicole Wilson passed away from complications of her type I diabetes at the tender age of fifteen.
Nicole Wilson
Type I diabetes first appeared in the Wilson’s lives when Nicole was diagnosed at the age of two. The burden that type I brings to people and their loved ones is largely invisible to the outside world. It’s one of those things in life that defies explanation; you really can’t appreciate the unrelenting nature of acting as your own pancreas, twenty-four hours a day for the rest of your life, until you are forced to do it.
I learned about Nicole when a tweet that her sister Kelly sent went viral. Their parents, Chris and Deirdre, had the idea to contact Nicole’s favorite band, One Direction, to ask them if they would dedicate a song to Nicole at an upcoming concert held at the Dallas Cowboys stadium.
@OneDirection my sister was your biggest fan, she passed away the other night in her sleep due to complications of diabetes. For her bday we were supposed to attend the concert in Dallas. We had such amazing seats and she was so happy to see yall. Can you all do something special for her at the concert. Her fave song was Story of My Life, and that will be playing in her funeral video. #SingForNicole
I immediately found myself wanting to help the Wilson’s spread the word about Sing For Nicole, their story touched me greatly, as a parent, a diabetes advocate and the father of a little girl who was also diagnosed with type I diabetes at the age of two. I spoke with Kelly Wilson about her sister, type I, Camp Sweeney, #SingForNicole and the advocacy that is helping her family to cope with their loss.
Kelly told me that she wants to become a nurse; she found her passion for healthcare while attending diabetes camp with her sister. Camp Sweeney located in Whitesboro Texas, was Nicole’s home away from home for the last nine summers. A wonderful retreat where children living with type I can learn about their disease, experience the embrace of community and just be kids.
When Kelly first tweeted #SingForNicole she was just trying to help her parents by keeping Nicole’s beautiful energy in the world. Social media had different plans for her tweet. In no time #SingForNicole went viral nationwide and when it did, the Wilson’s goal began to grow.
They decided to try and raise three thousand dollars to send a child to Camp Sweeney as a way to help others and raise awareness. To date, they’ve raised over thirty-five thousand dollars, started a charity and are well on their way to creating a beautiful tribute to Nicole that will benefit children for years to come.
Kelly hopes that people will remember her sister’s smile, that she was the embodiment of boundless energy, a pure spirit who never let type I diabetes stop her from living her life to the fullest.
I hope that One Direction will take the stage later this summer at AT&T Stadium and Nicole’s favorite member; Niall Horan will step to the mic and dedicate her favorite song, ‘Story Of My Life’, to Nicole. I hope that the crowd chants “Sing for Nicole” and I’d love to see endless tweets adorned with the hashtag that was typed by her sister, as her family tried to imagine how to bring sense and meaning to the loss of their little girl.
Nicole wore this banana costume on Friday's at school while she made the morning announcements. 'Fruity Fridays' helped to promoted healthy snacks.
Please consider supporting the Wilson’s journey by helping them to send deserving children in need to Camp Sweeney. Be part of keeping the story of Nicole’s life trending, because when you do you’ll be supporting people everywhere who live each day with the uncertainty that type I diabetes brings.
Donate, tweet… sing for Nicole.
Sing For Nicole
Go Fund Me - Camp Sweeney
Camp Sweeney
Follow Kelly on Twitter - @KellyWilsonnn
#SingForNicole
One Direction on Twitter
Image from People.com
The Band - @OneDirection
Niall Horan - @NiallOfficial
Harry Styles - @Harry_Styles
Liam Payne - @Real_Liam_Payne
Louis Tomlinson - @ Louis_Tomlinson
Zayn Malik - @ZaynMalik
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
Happy D Mother's Day!
Happy Mother's Day to the most amazing group of moms that the world has to offer.
Celebrate yourself today!