Contest: Guess Arden's New Puppy's Name
Arden has been asking for a puppy forever and today she got her wish when her Christmas present arrived at the airport.
Arden spent the past weeks thinking of names for her new best friend, she took suggestions from family and friends, looked through baby name books, but in the end she decided on a name all on her own - and it's a diabetes centric name.
So the first person who can guess what Arden named her new puppy wins three pairs of blue circle shoe laces. The contest runs until someone gets the name correct. If more than one person guesses correctly I'll give three pairs to the first correct guess and one pair to each of the others but the contest will be shutdown twelve hours after the initial correct guess is made.
Puppy is three months old. He's a mix of French Bulldog and Boston Terrier. They call him a Faux French, he's such a cutie!
Okay, I'm exhausted from driving to the airport at four in the morning (he missed a connecting flight) so I'm going to take it easy while you try to figure out his name. Remember, it's diabetes related... good luck!
Only two rules: All guesses must be made in the comments of this post. Open to US and Canadian residents only for shipping cost reasons.
Arden named her new puppy Basal...
Don't Let Doctors Push a Pump on You
I've never told the story of the day that we chose Arden's insulin pump because it involves people that I love and who have done countless wonderful things for my family... f%&cing up.
But it's been a while and most of the people involved in the story have moved on to other places of employment... so what the hell.
Kelly, Arden and I stepped into the conference room at our children's hospital for a pump presentation. There was maybe a dozen families in attendance, each frightened, unsure and hoping for proper guidance. The people running the presentation spoke for a while, they taught us about pumping and then brought all of the different pumps out so that we could see them. Parents began to formulate questions, it was obvious to me by the trainers answers that they had their favorite pumps and were trying to lead people to certain devices.
Not wanting to be part of the folly, I went back to the demo pumps at the now abandoned display. This table was set up so specifically, like a display at a high-end retailer. Each pump was presented just so, documentation arranged off to their sides. It looked like the manufacturers sent a trainer, to train the pump trainers on how to make the pumps appealing.
Beyond the table was in a misshapen corner of the room where the trainers had abandoned the packing materials. The mess caught my eye and when it did, I noticed a little white box with green and blue printing that didn't look like it belonged with the garbage. I walked over to investigate and found an Omnipod starter kit that contained a PDM and sample pods.
"What's this", I asked a trainer.
"You don't want that", she replied.
Not being the kind of person that enjoys being told what I do or don't want, I responded with a bit of sarcasm, "Oh... why not?".
Then it happened, a person I was counting on to give me good advice, began just to say what ever they could think of to make me rejoin the group.
"Your daughter is small, you want a Ping" - "This one won't work on skinny kids" - "It doesn't have a small enough basal rate" - "You will be limited to sites" and my favorite, the scare tactic that they all love to pull out... "If you don't like it, you will be STUCK with it for four years because of (Cue scary music) your insurance... FOUR YEARS".
I didn't listen to her. I inspected the Omnipod and saw a lot that I liked. I saw different, innovative, the ability to change designs without having to repurchase and of course, I didn't see any tubing. We were sold and set off to show the pod to Arden so we could explain how it would work. In the time that we sat there talking to Arden, each trainer took a shot at scaring us into not choosing the Omnipod.
Fast-forward to two years later
Arden's Endo appointment ended and the NP asked if Arden could wait outside, she closed the door behind Arden and then said this.
"I wanted to take a moment to apologize to you..."
You see, two years prior at the pump training that I just told you about, the people in Arden's practice didn't have any experience with the Omnipod and they didn't want to be responsible for overseeing a device that they didn't understand. It wasn't the basal rate or a lack of sites that made each of them try to talk us out of what has become the foundation for how we keep our daughter happy and healthy. They weren't concerned medically and everything they said was one hundred percent horse shit. They were just covering their asses. Anyway, the NP goes on to tell me that because of the fantastic success that Arden is having with the Omnipod, the institution is going to start prescribing them to children.
There are a few professions that we are conditioned from birth to revere. Police officers, teachers and doctors are the big three. You listen to police, you respect your teachers and you assume that your doctor knows much better than you - and I would tell you that I believe those things are true a lot of the time, but not all of the time.
I tell you this story today because I recently heard about a family that was being forced away from a device that they wanted by their doctors. Medical professionals who defended their position with a lot "information" and "reasons". Doctors who took advantage of the patients desire to want to believe and listen to them – I deplore that. I've been around type I diabetes long enough to see this happen time and again and I wanted to offer you the moral support to trust yourself. I'm certainly not suggesting that all doctors are lying, or that every time you are prescribed something it's with deference to who the institution has business relationships with - but you know, it's worth considering.
You are the final word on what pump (or CGM) is right for your family. Do the research, ask the question and by all means take your medical teams advice seriously, but don't let anyone pressure you into a decision that you aren't comfortable with.
Stand firm the next time you feel pressured by your medical team to make a decision that you don't agree with but for all that is sacred, if a cop tells you to put your hands up.... please do it. ;)
If you're looking for a deeper conversation on this topic go to episode 124 of the Juicebox Podcast.
Korn Frontman Supporting JDRF with New Song
- This story is reposted in it's entirety with permission -
A huge thank you to the hard rock music news web site Blabbermouth.net for their generosity.
KORN's new song "So Unfair", which was inspired by frontman Jonathan Davis' youngest child, Zeppelin's battle with Type 1 diabetes, can be unlocked by going to this location and contributing to JDRF (formerly known as the Juvenile Diabetes Research Foundation), a major charitable 501(c)(3) organization dedicated to funding type 1 diabetes research.
Says Davis: "I want to support this wonderful organization that is fighting tooth and nail to help these little kids out. It's a horrible disease and I hate seeing kids in pain.
"Your gift will help JDRF to create a world without Type 1 Diabetes.
"Everyone who contributes to this campaign will receive our new song, 'So Unfair'. I'm also going to invite one lucky contributor and a friend to our private recording studio to create and record a song with me.
"Good luck and see you in the studio!"
Beyond the dietary changes and other lifestyle accommodations, Jonathan's son's struggle has prompted the singer and his wife Deven to become deeply involved in raising funds for research.
In a video message promoting the "So Unfair" campaign (see above), Jonathan said: "[My son's had Type 1 diabetes] for now a over a year. It's a battle for the parents, it's a battle for him, it's a battle for everybody. It's a horrible disease.
"I was out on the road. My wife was calling me, saying Zeppy was really tired and just being lethargic and laying around, and something was wrong. I got home from tour, and we took him to the hospital and told them what was going on. And they started running tests and doing all these things, and they decided to check his blood sugar, just to see. I think he was, at that time, 290. And so that set off a flag for Type 1 diabetes. His glucose was high. And when that happened, that changed my life forever. I found out my son had Type 1 diabetes."
He continued: "It's been very hard dealing with that, because there's a lot involved. I have to constantly monitor his glucose, I have to constantly hurt him and stick him with needles, and he doesn't understand.
"It's a horrible disease and I really wanna do whatever I can do to make a difference to help find a cure for this. 'Cause it just doesn't affect my son. I feel for everyone who has this disease. It's not fair at all. And so I started writing this song, 'So Unfair', about it. Because you're asking a child not to eat candy. I've gotta watch his carbs, I've gotta watch the sugar count, I've gotta watch everything. And how do you tell a child, 'You can't eat this. You can't do this. You can't do that.' So it's been a constant battle with me. I constantly worry about… At night, I've had him… his blood sugar drop really low where it'd scare where he won't look up. It's a very difficult thing to deal with. But there's one thing that keeps me going. I have a support group, which is my family, JDRF. They give me hope. They're searching for a cure constantly. I have hope that they're working on an artificial pancreas. I've been reading a lot about that."
Jonathan added: "Now [Zeppelin is] seven years old and he won't do the pump; he doesn't wanna use a pump. For me, it would be a lot better for him to use the pump, because he only has to get stuck one time every two days, but right now I'm sticking him about ten times a day, between finger checks and actual shots.
"He's a little boy, so when we got to sleep at night, he'll wake up in the middle of the night and try to sneak food and he'll wake up with high glucose in the morning.
"There's all kinds of challenges that I'm facing.
"Bottom line, I really wanna try and do something to help find a cure for this disease. And that's the bottom line. And I just wanted to express my frustration and my feelings in writing that song, 'So Unfair', and I wanted to put it out there and give all the proceeds to JDRF, so they can find a cure for this bullshit. And I'm just gonna say it, it's fucked up, and I want it to be gone. I don't want no one to suffer from this.
"If you can, buy the song, 'cause I want all the proceeds to go to this wonderful foundation that is fighting tooth and nail to help these little kids out.
"I hate seeing kids in pain; it just kills me. So buy the song. Let's find a cure for this bullshit, please."
"So Unfair" is available here for preview and download. www.rallysong.com/korn
You can read this story where it originated at http://www.blabbermouth.net/news/korn-singer-jonathan-davis-discusses-his-sons-battle-with-type-1-diabetes-video/
Whack a Nurse
It happens every time that we change Arden's CGM. Not some of the time or once in a while, not now and again - EVERY fu*$ing time.
"Arden we need to swap your Dexcom sensor"
A moment later Arden and I meet up, usually at the kitchen island, she hops up to bring her hip to my eye level, all is well – until I reach out to remove the sensor.
Arden instantly tenses up, becomes frightened and speaks the following words - EVERY time.
She always begins with an apology for being anxious, "I'm sorry - I'm just afraid that the wire will come out".
That's it, she worries that the wire will break free of the sensor and stay embedded in her skin, she further believes with all of her heart that this will lead her to a hospital visit where the wire will be surgically removed.
Do you know why she thinks this... let me tell you.
Because of one poorly thought out moment that happened in 2010 when a nurse told Arden this could perhaps happen and that she should be very careful. "I've heard that the wire can break off and you'll have to come to the hospital to have it removed" - The person who said that was an idiot, not for saying it, but for saying it in front of Arden.
By the way, the wire has never broken off. I actually believe that Arden has as much chance of seeing the Loch Ness Monster as she does of needing surgery to remove a CGM wire, but thanks to dopey the nurse... she just can't shake those five year old words. It's now fIve years and probably hundreds of CGM swaps later and Arden still has this reaction EVERY time. One poorly considered utterance to a six year old and nothing I have yet to say has helped Arden to relax enough to forget those words.
I've tried to reason with her - "Arden we do this all of the time, has the wire ever come out?"
I've tried joking, reassuring, hugging. I've tried everything that a reasonable parent could think of and nothing ever works. By the way, Arden doesn't think the CGM hurts, she loves wearing it and receiving the data. Never-the-less she experiences a moment of real terror each time that we swap her site. Breaks my heart, frustrates my mind and dings my soul...
Last night I tried something different in the hopes of alleviating her needless anguish. I cursed.
"I'm sorry - I'm just afraid that the wire will come out..."
"Arden, I wish the god damn nurse who told you that the wire could break was here right now. I would smack her in the head!", I began. Then I continued telling Arden how angry I was at the nurse for saying something like that in front of her when she was too young to understand the intricacy of her words.
Here's to hoping that the next swap is different and that some well-meaning, yet ultimately mis-guided person won't say something else that terrifies my kid.
I think that I really would whack her in the head if she was here.
A Trip For Slowey
Some of the authors that write for my publisher, Spry Publishing are sharing stories of what writing means to them - it sounded like fun so I thought that I would join in.
I wrote my first book in grade school for something called the Young Authors Conference. That book took first place in my class - remember when everyone didn’t win - and I recall being ushered to the front of the classroom where my teacher spoke a few words about my accomplishment and then handed me what she considered to be my prize, a blue ribbon.
But that ribbon wasn’t the prize.
The next day our school librarian collected all of the winning titles from throughout the building and put them on her book trolley. The trolley would visit each class and students were given a chance to read the winning books in their classrooms. This was my prize!
I loved to imagine that someone was curled up with my book, ‘A Trip for Slowey’. You see Slowly was a turtle from a small pond who dreamt of something better, but when he took off to find excitement and adventure… all he found was the striking lesson that there was no place like home. I wrote that when I was six years old, I had to dig it out of a closet just now to remember what it was about because my only memory of that book was the joy that I felt when I imagined it being read.
Many years later I began to write about my life as the father of a child who lives with type 1 diabetes. If I had to act as my own psychiatrist for a moment, I’d say that I probably began to write online about type 1 as an outlet for my emotional pain. Soon after the blog went live, I heard back from one of my first readers and their message was one that informs what I do to this day. My sharing was helping her. I wrote something that she identified with. The knowledge that she wasn’t as alone in the world as she felt, was physically and emotionally freeing. I finally found the joy from my childhood as an adult, and it’s a joy that only comes from sharing my thoughts in an intimate way with others. Writing allows that intimacy unlike any other form of communication. Written words follow an unspoken path that begins in the writer’s heart, and with some luck, ends in the reader’s.
Though I don’t want to give short-shrift to ‘A Trip for Slowey’ and other elementary school award winners like, ‘Star Wanted to be a Star and ‘Grammy and the Green Ford’, eventually the blog led to my first book.
As a child, my only goal for writing was to get my book on that trolley. Today, I just hope that something that’s floating around in my head can create a moment of sameness with another person. I’ve seen now first-hand what that connection looks like, I no longer need to imagine someone reading my words. There is no purer feeling then the return I experience when exposing my thoughts in writing, leads to a stranger find themselves in those words.
That energy takes away my fear and fills the void with a satisfaction and warmth that it impossible to replicate. It recharges me so that I can do it again. Writing is my own personal self-sustain engine that powers me so I that can try to empower you.
Spry Publishing is leading the way in diabetes resources: check out Spry’s diabetes titles at www.sprypub.com/diabetes/ . Hurry! If you order in November you’ll receive 50% off your book by using the code “Diabetes50”.
