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/
Video: Sierra Sandison on Dr. Oz #ShowMeYourPump
Sierra Sandison became Miss Idaho 2014, dreamt up the viral hashtag #ShowMeYourPump and is competing to be Miss America – all with her insulin pump clipped at her side.
Now she's on the Dr. Oz Show showing her pump to his audience and making every person with diabetes about as proud as can be.
I first met Sierra in July when I interviewed her about the events that led up to her #ShowMeYourPump tweet; which inspired people everywhere to share photos of themselves with their insulin pumps. During our conversation I learned about McCall Salinas and how a talk that she had with Sierra led to the Miss Idaho wearing her insulin pump on stage.
The Miss America Pageant is on ABC Sunday at 9 pm est. The top 15 contestant make it to the live stage and I'm hoping, as I imagine are all of you, that we see Sierra show her pump Sunday night on national television. Good luck Sierra, the entire diabetes community is behind you!
Learning to Live with Diabetes
I didn't expect to be so deeply effected when I spoke to a group of D Parents.
Way back in January I received an email from a lovely woman named Carla who is a D Mom, an advocate and a volunteer for a charity called Learning to Live that helps children with diabetes. Thing is where Carla lives, they call the charity Aprendiendo a Vivir because it's in the Dominican Republic.
Carla's email asks if I would come and give a speech at an event they were having that concludes with a 10k. My short answer was, "I'd be honored, but don't speak a word of Spanish and I don't run".
Carla didn't care, she said they would find me a translator and I could walk the 10k. I found apprehensive about traveling to a place where I would mostly be mute, invited by a stranger who found me through my book and blog – but something told me that I should go, so that's just what I did.
I thought that I was prepared to meet children who have limited access to diabetes care and supplies. But when I arrived on the island and began to talk to the people who run the charity, I quickly realized that I didn't - though I thought that I did - have an appreciation for what having diabetes outside of America meant.
Dominicans who do not have private insurance or the means to provide for themselves rely on local hospitals for their supplies. It is not uncommon for a person to receive thirty test strips per month – one a day. That concept overtook me and I struggled to imagine how I would best utilize one test strip a day, keeping Arden healthy with only one strip seemed impossible.
I heard stories about children dying very young from completely ignored diabetes, families that weren't educated about the diseases but trying and others who were culturally predisposed to accept that life with diabetes meant that it would be greatly shortened. After seeing first-hand what having diabetes in the Dominican Republic was truly like and hearing about families, some who existed on the equivalent of one thousand dollars annually; I returned to my room on the first evening of my visit and threw away my speech. I'm still not sure if anything I said the next day was helpful, but I tried my best to relate our experiences in a way that would make sense to the parents listening.
Aprendiendo a Vivir was founded by a young man named José who happened to be studying in America when he diagnosed with type I, when he returned home and saw the difference between the education, tools and understanding that he was given in the U.S. and what was available to his fellow countryman; he sprung into action and created a network that supports children with diabetes in a way that left me awe inspired.
I was so concerned when I stepped onto the stage that what I was about to say wouldn't translate both in language and spirit but when I finished speaking a young mother brought her little girl to me so she could show me her insulin pump. She was very proud of her daughter's pump because their aren't many people living on D.R. that can afford one. I sat down on the edge of the stage and found a picture of Arden with her pump to share, when I showed the little girl Arden's picture she just smiled and hugged me.
A moment later as I walked through the crowd a mother stopped me to say thank you for mentioning that diabetes doesn't make you a broken person. She confided in me that her grown son's father is not accepting of his diabetes because he see's him as damaged. She added that it made her happy to see a father supporting his child with diabetes. I didn't quite know how to respond, so I hugged her just as the little girl had hugged me. We both cried.
As it turns out, it didn't matter that I don't speak any Spanish.
More images from the event can be found in my Image Gallery here.
*I misspoke during the address, Kris Freeman is a 4 time Olympian, not a 4 time gold medalist.
A1c Countdown: It's Endo Time
Endo time...
Only 24 hours before the American Diabetes Association announced their new A1c guidelines for children 19 years old and under, Arden was in her Endocrinologist office for her quarterly appointment. We missed her previously scheduled appointment in April because of an illness. At that time the Doc told us, "Arden's A1cs have been good for the last year and a half... let's just get back together in June".
Skipping a quarterly appointment made me feel strange but the three months seemed to fly by and before I could wonder what happened to the time, it was June and I was signing Arden out of school just like we have every three months for the past 8 years. It was Endo time. I found myself thinking about those numbers as I drove to the office.
"Diagnosed in August of 2006... first Endo appointment was in early September..."
Then I counted off the months. "October, November, December... December of 2006 was her second visit. Then four in 2007, 2008, 2009, 2010, 2011, 2012, 2013 - we just skipped April of 2014, so this is maybe, Arden's 32nd visit to her Endocrinologist.
This thought made my heart heavy until I remembered my recent trip to the Dominican Republic, and I was quickly reminded that there is an entire planet full of people living with diabetes and most of them can only wish that they were able to visit a doctor. I adjusted my thinking and instead of the number 32 feeling like an albatross, it started to feel like a life preserver.
I walked into Arden's 32nd Endo appointment with a fresh set of eyes. Arden however, was not in the same mindset - she was preoccupied, unusually nervous and she seemed just a bit unsettled. When I asked her why she said, "I think I get a blood draw today... I really don't want to do that". A few minutes after we got into the waiting room a nurse called our name and we were off. These visits have their own pattern. Height, weight, blood pressure and other vitals happen in a room thats no bigger than a walk in closet, then we head down the hall for a hemoglobin A1c test and blood draw when necessary. The nurse started with Arden's A1c, loaded the sample into the machine and then ushered us to an exam room, "No orders for a blood draw in the computer", she said. Arden was relieved but confused, "I always get a blood test in the summer", she told me as the nurse left the exam room. Then she smiled as if she had gotten away with something big. About a month ago Arden experienced serious and sudden needle anxiety while at a dentist appointment, this was new for her, and I never imagined that it would translate to her Endo appointments because while she doesn't enjoy the blood draws, she has never resisted them or been afraid.
After the nurse left the exam room we chatted about softball for a minute (Arden's 9 year old All Star team had just won their tournament the day before) and then I snuck back to the phlebotomists room to get an early peek at her A1c result.
Arden's A1c has been steadily improving for the past two years but this was our first experience with skipping a quarterly appointment and I was irrationally concerned that would mean an increase from Arden's last result of 6.7. When I arrived in the room, it was empty and there was about one minute left in the process... just enough time to get my phone out of my pocket.
Watch the ten second video before you read on - trust me.
My heart did a backflip when "6.2" appeared on the screen, a back flip. In July of 2009 Arden's A1c went from 8.5 to 8 when we switched from shots to the OmniPod insulin pump. In October of 2012 I blogged about the factors that I believed helped get us to her new best of 7.5. I remember just hoping for 7.4 in June of 2013 when Arden's A1c made a serious leap to 6.5. We stayed steady for some time around 6.7, and to be honest, staying steady felt like a bigger accomplishment than achieving a decrease. The decreases come as you make adjustments but who knows if they are anomalous... steady is, well, steady... it's balance, it's relief. I love steady!
That said, I'd be lying if I told you that 6.2 didn't make me wonder what a number that began with five would feel like...
Oh, and we did need to get blood drawn on this day, but that's a whole other story...
Arden does not experience significant or frequent lows. Achieving a desirable A1c under those conditions is not healthy nor an indication of health. Steady is much better than fluctuations that "trick" you into feeling good at A1c time. Please remember to read my discloser, it will remind you that I have no medical training and this site is not meant to replace your doctor because my words are not meant to be advice. Arden's Day is just a blog.
Why can't we use it?
Can you share this video? Help seniors ask Medicare to stop taking their CGMs away when they reach the age of sixty-five.
Very moving to hear these folks talk about living life with and without the device.
