Type 1 Diabetes

Emotions Run High, Just like his blood sugar!

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Today is day 3 of the Diabetes Blog Week. If you would like to learn more go to: http://www.bittersweetdiabetes.com/ Today’s topic relates to how we cope as parents of a child with a chronic illness, for us it’s type 1 diabetes. It is an emotional journey for sure, starting with the diagnosis.

We diagnosed Joey at home, my daughter’s son Cooper has type 1, since age 22 months. Because I was going to be attending an event with her to keep an eye on my grandson, I thought I better practice testing blood sugar, since my grandson was a baby, we didn’t want to practice on him. When we asked Joey if I could test him, he said “NO WAY!”  So we did as any good parent would do, we bribed him.  Thank God he agreed to be tested, because his blood sugar was 466! (And we thank God often.)

Emotionally, that day was almost to much for me.  I’ve come to my breaking point a couple of times, that was one of them.  You see, my 8 year old son watched his 22 month old nephew go through the diagnosis of type 1 diabetes.  He curiously watched as my daughter would dose Cooper every time he ate. He had a pretty good idea of what type 1 was all about. In an 8 year old’s mind, it meant one thing: SHOTS!

My first emotion was Fear, fear that he would get sick like Cooper did, we almost lost him. This all happened on Mother’s Day, so it was a Sunday, right in the midst of the H1N1 flu epidemic of 2009.  Then came the Anxiety: I called my friend Bill, who is a pediatrician, to get his advice on what to do right then and there. Do we go to the hospital? Do we wait? How sick is he? Relief for a brief moment when he said to stay away from the flu infected hospital, could do more damage if we went there.

Ironically the very next day was Joey’s 8 year Dr. appointment.  Since my friend Bill was at the same Pediatric office as Joey’s doctor, he talked to her the very next morning to fill her in on what was happening.  So after his physical, she had the nurse come in and take a blood measurement. I took a deep breathe, probably the deepest breath I have ever taken, and held back the tears.  In that moment I felt despair.  How am I going to look him in the face and tell him that he has type 1 diabetes, like his nephew? Can I hold back the tears??

The Dr. came in, and Joey looked at her and said, Do I have diabetes?  So darn brave!  And she said “yes, yes you do.” I felt sick. She gave us instructions to report to Children’s Endocrine clinic that very next day to start classes, Classes!  I remember these classes, I sat through them when my grandson was diagnosed, and I was so confused then. Will I get it this time? A class, I need a class to learn how to take care of my son, can I do this? I felt doubtful, but determined.

That was 5 years ago.  I rarely get emotional about type 1 anymore. In the beginning I would cry a lot, in the privacy of my car. I didn’t want Joey to see me crying because how would that make him feel! But tonight for some reason when I checked him at 2:15 am, the sick feeling that I used to get came back. His blood sugar number was 457! Dangerously high! 

Turns out his pod reservoir was low on insulin. There wasn’t enough to even give him a correction for the high BS. So I had to wake him -fully – so he could change his pod. This also meant that his body wasn’t getting the insulin every hour that it should have been. Hence the high blood sugar number. As I sat next to him on his bed while he changed the pod, and then proceeded to give him a shot to get his blood sugar down, I had to hold back the tears, once again, I felt an overwhelming bit of sadness, I held off the tears, until I got to my bed! 

Sadness is the overall feeling that I get when I do get emotional. Sad when he is sitting at the top of the snow hill, because his blood sugar is to low to sled with this friends, sad when he is on the sidelines of one of his basketball or football games, Sad because he loves those sports, and hates being on the sidelines.  

I get scared when Joey gets sick. Scared that we’ll end up in the hospital with ketones.  I am scared at night, that if I don’t wake up at 2:00 to check him, his blood sugar will either be to high, or to low.  I am scared when I can’t see his face under his football helmet to tell if he is sweating like he does when his blood sugar is to low. 

Day to day I feel joy, when I look at Joey and the see the wonderful, healthy teenager he has become, it brings me joy. I love that he’s sassy, sweet, kind, and loving. So even though I go through the gambit of emotions regarding my son having a chronic illness, it’s all good. Do we long for a cure, of course, and one day it will happen!  We have to stay optimistic, to get through each day. And when that day comes when there is a cure: then we’ll be Happy!

 

 

 

 

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Type 1 Diabetes

World Diabetes Day – November 14th, 2103 – Joey at the Capitol

world diabetes day logo
As the American Diabetes Association’s SE Wisconsin Youth Ambassador, Joey knows it’s important for him to represent the youth with type 1 diabetes.  So, Joey and I will travel to Madison WI for World Diabetes Day on November 14th.  We’ll start our day with Representative Pat Strachota and other Wisconsin diabetes advocates.  It’s important to keep diabetes on the minds of our lawmakers, as we need to ask them to continue funding research and bills that relate to life with diabetes.  This is important so we can someday have a world without diabetes. Currently there are 26 Million Americans with type 2 diabetes, that’s more than 8% of our population.  Of that number, over 7.000 are not yet diagnosed.  If current trends continue, by the year 2050, the number of Americans living with diabetes will be 1 of 3 adults will have the chronic disease.  The time is now to learn more, become a diabetes advocate!  The event is from 8:00 – 9:00 am in the North Hearing room of the State Capitol.
A Bit of History Behind World Diabetes Day
November is National Diabetes Awareness Month, November 14th is designated as World Diabetes Day.  World Diabetes Day was introduced by the International Diabetes Federation (IDF) and the World Health Organization back in 1991 in response to the alarming rise of diabetes around the world.  Since 2007  Novo Nordisk has partnered with the IDF to unite people with diabetes, to call for a “change diabetes” on World Diabetes Day.
November 14th was selected because it is the birthday of Frederick Banting who, along with Charles Best, first thought of the idea which led to the discovery of insulin in 1922.  What better day to celebrate!  Each year Diabetes Awareness Month is centered around a theme, different each year.  Some of the themes have been: diabetes and obesity, diabetes and human rights, diabetes and adolescents.  From 2009-2013 the theme has been diabetes education and prevention, which when we talk of prevention, we are talking about type 2.
Novo Nordisk
 I mentioned  Novo Nordisk, they are a global company with over 90 years of leadership in diabetes care.  They make the insulin that Joey uses, called Novalog.  When Joey was diagnosed we started using Humalog insulin, but we changed to Novolog because we appreciate the support that they give to the diabetes community.   Anytime we went to an event this past year, they were there, most likely sponsoring  the event.  For instance the Moses E. Cheeks Slam Dunk Basketball Camp that Joey attended in July was possible because of Novo Nordisks’ sponsorship.  Without it, the basketball camp would not have been possible.  We appreciate them so much.
jen from novo
A Look at Our Day!
We were invited to be guests on WISC – TV’s Morning Show, at 6:00 AM.  Because we aren’t morning folk, we spent the night before at my brother and sister in-law’s house in Middleton.  Neither Joey or I slept very well, we were nervous about being on a TV show, thinking we had a 15 minute segment.  We had our topics we wanted to cover, Joey especially wanted to talk about how modern technology has eased the burden of type 1, even though he still has to prick his finger numerous times a day, at least he doesn’t have to figure out his insulin calculations or give himself a shot, his pump does everything for him.  All Joey had the chance to say was how hard it is to have type one.  Then she turned to me and the 2 minute interview was over.   Oh well, next time.
 joey at WISC
joey on tv
The Celebration at our WI State Capitol
state capitol
From TV show to the State Capitol for the WDD event.  When we walked into the North Meeting Room at the Capitol, we were taken up to the front row, that’s where the speakers sit of course.  Joey was immediately asked for an interview by Rob Hague, from the Wisconsin Radio Network. (WRN)  I was super proud of him, because after our slight disappointment from the Morning Show,  he bounced right back and did a great job with Rob.  Here is a link to the interview. http://www.wrn.com/2013/11/raising-diabetes-awareness/
World diabetes day group
The Proclamation 
After the radio interview it was time for the event to get started. Wisconsin State Representative Pat Strachota’s started by telling us the facts about diabetes
and the cost of the disease.  Besides serious health-related complications, diabetes is also economically costly in Wisconsin.  Medical care and lost productivity
related expenses cost Wisconsin an estimated total of $6.15 billion dollars a year.  WOW!   I know first hand that diabetes is expensive, we pay for Joey’s supplies,
and there are a lot of them, every 3 months.  We are thankful for our insurance, however our co-pays keep getting more and more expensive.
 We need the two of us working to keep up with raising medical costs. And we don’t have an option. No insulin, no Joey.
Novo Nordisk was instrumental in the Governor signing the Proclamation to make November 14th Officially Diabetes Day in Wisconsin.  It’s important because it means that our government realizes the significant impact that diabetes has on families in WI and are committed to addressing those challenges.
Thank you Novo Nordisk for all that you do.
Proclamtion
Joey’s Speech
Joey spoke after Representative Strachota.  He talked about his life with type 1, that he loves to play football and basketball, and that he is a good student.
He told everyone that he has to be diligent with checking his blood sugar when he plays sports, and that his Omnipod Wireless, tubeless Insulin Pump System helps him a lot. He mentioned a lot of the fun activities that he has been able to experience since he was named the 2013 Youth Ambassador for the ADA.  He also mentioned being inspired by people that he has had the opportunity to meet like  Jake Bryne, who has type 1, was a WI Badger, who now plays for the Houston Texans, Kendall Simmons, who has type 1 diabetes, yet played in 2 Super Bowl games, and has the Championship rings to prove it, Dominique Wilkins, one of  the best basketball legends of all times, who has type 2 diabetes and finally singer Bret Michaels, they have all taught Joey that no matter what his dreams are, if he stays focused, he can reach those dreams.
 His speech was awesome.  Here it is on YouTube, the room was big and there is an echo, so it’s hard to understand him.

Joey with Representative Strachota and proclamtion

We are so proud of Joey.  Attending the WDD celebration at the State Capitol was very inspiring for us.  Joey was on TV and on the radio all before 8:30 am.  He is an inspiration to our family.  What we are learning is that awareness is key to making a difference.   Making a difference is key to change.  Joey is inspired by those around him that have diabetes, yet go after and achieve their dreams.  Joey wants to inspire kids, as he said in the radio interview, he wants kids to know that they shouldn’t be embarrassed because they have type 1 diabetes, they didn’t ask for it,  they couldn’t have prevented it.  Awareness and Education, that’s what it’s all about.
Type 1 Diabetes

Support Comes in so Many Ways!

Hello,

We just want to say thank you for the continued support to help us find a cure for type 1 diabetes. You have been a blessing to our family. Over the past 5 years we have raised over $32,000 for type 1 diabetes research. We are so proud of that, but couldn’t have done it without friends like you. Maybe you didn’t donate money, but walked with us, or “liked” a post on facebook, so more people would see it. Regardless of how you’ve been there for us, we appreciate it.
Because you have been a supporter of Joey’s quest for a cure for type 1 from the beginning, we’d like to share a few of Joey’s accomplishments. We believe that it’s been your show of support that has given him the confidence to speak before hundreds of people, or in front of a TV camera, or in front of our State Senator’s and other law-makers. Here are a few of the amazing opportunities that Joey has had since becoming the American Diabetes Association’s 2013 Youth Ambassador:
1. Spoke at the ADA’s Family Link Event uniting first time kids that will be attending diabetes camp.
2. Was interviewed at our home by Tom Pipines for an upcoming Fox 6 Sports report on Joey, Jake Byrne (former WI Badgers TE, now vying to keep his spot on the Houston Texans) and how diabetes doesn’t hold them back. The segment airs on Sunday, July 21st, on Fox 6, at 9:30 pm.
3. Spoke at the Tour de Cure ride to stop diabetes, and rode in the event. Raised over $4,000 for research!!
4. Went to Camp Lakota (diabetes camp sponsored by the ADA and the WI Lions Camp) as the Ambassador, while there was contacted by local ABC affiliate who asked to interview Joey for a sports segment on their news, which was also picked up by WISN and shown last week. To see the entire sports story with video, go to: http://www.myfoxwausau.com/story/22788411/2013/07/08/wisconsin-boy-football-player-show-diabetes-cant-stop-them
5. August 10th: On behalf of the ADA, Joey will appear and speak at the Mallard’s baseball game in Madison, he will appear in the ESPN booth for an interview with retired baseball player who also has type 1 diabetes.
6. Participated in the Diabetes Day at the Capitol; he went before 4 different law-makers and spoke about type 1 diabetes: the cause, the cost and the fact that there isn’t a cure.
7. Wrote a blog entry for Omnipod (his pump company) that is part of a series with Jake Byrne, myself, and Jake’s mom Holly. Go here to read: It’s called Tackling Diabetes Series: http://suited.myomnipod.com/blogger-series/
8. Robocall for the American Diabetes Association where he recorded a message that was sent to thousands to promote the Step Out: Walk to Stop Diabetes walk in Milwaukee on October 19th. Please join us as Joey will kick off the event. http://main.diabetes.org/goto/Joeyspage
Why are we telling you all this? In addition to being VERY proud of Joey for making diabetes education his platform this year as the Ambassador, we want to show you that he is out there, advocating for Type 1 research, he isn’t just asking friends and family for their hard earned money, he is also working hard to make a difference.
He still has a lot of fun events ahead: The Walk to Stop Diabetes in October, and the Gala in November, he has a magazine article coming out in October, written by Professional football player Jake Byrne, about Joey. He has the event at the Mallard’s game in August. Joey realizes how important it is to be seen and heard, he loves to motivate others to follow their dreams. It’s like the football quote from Lou Holtz: “Ability is what you’re capable of doing. Motivation determines what you do. Attitude determines how well you do it.” ― Lou Holtz We are so proud of Joey’s attitude, and how well he is representing type 1 diabetes.
Joey wants to be a part of the team that finds a cure for type 1, and he is definitely working hard to make you proud of him, because you are a huge part of his team!
Thanks for letting us take this opportunity to show you how you are helping Joey grow as a confident, funny, happy go lucky kid, even with a disease that makes him prick his fingers up to 8 times a day, or count every carb that he eats and then cover it with insulin, and even as he endures Joe and I waking him up every night at midnight and 2:00 am to check his blood sugar! Thank you!
May your family receive as many blessings as we have.
Thank you,
The Balistrieri Family

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Type 1 Diabetes

FOR IMMEDIATE RELEASE MARCH 29, 2013 American Diabetes

Youth Ambassador's
Youth Ambassador’s

FOR IMMEDIATE RELEASE

MARCH 29, 2013

American Diabetes Association Names Youth Ambassadors For Southeast Wisconsin.

BROOKFIELD, Wis. – The American Diabetes Association has named Joey Balistrieri and Cooper Wintheiser as the 2013 Youth Ambassadors for Southeast Wisconsin.

“This year we are excited to have both Joey and his nephew Cooper as Youth Ambassadors,” said Jacalyn Gillis, ADA’s Tour de Cure manager. “Both boys, as well as their families, are very active in the fight to stop diabetes. They will be great role models for everyone involved.”

Joey, 11, was diagnosed with Type 1 diabetes at age 8. His nephew was diagnosed three years prior so his family knew exactly what to do when they discovered that Joey also had Type 1 diabetes.  He has been a great advocate towards finding a cure for diabetes.

“I find that most kids don’t know what we have to go through and they think you can get it from eating too much sugar and that I can’t have any foods made with sugar,” said Joey. “I would love the opportunity to educate more kids on what Type 1 diabetes really is.”

Cooper, 7, was diagnosed at only 23 months. Doctors thought that he just had a bad case of the flu. It wasn’t until a trip to the emergency room and a blood sugar level of 1000, which is considered a medical emergency, that doctors diagnosed him with Type 1 diabetes.

As the American Diabetes Association Youth Ambassadors, Joey and Cooper will represent children all over Wisconsin who live with diabetes. They will attend Step Out, Walk to Stop Diabetes, the American Diabetes Association Annual Gala where they will be able to share their stories and bring awareness to the disease and participating with their team in the Southeast Wisconsin Tour de Cure June 15 at Grafton High School.

“I stand strongly behind diabetes research and enjoy showing and telling people about my disease,” said Cooper. “I want people to know that there was nothing I did to cause this.”

Joey attends Holy Apostles school.  He swims, runs track, plays football, but most of all loves basketball. He has also begun writing a blog about his life with diabetes.

Cooper attends Elm Grove Lutheran School.  He loves to watch hockey and soccer and play video games. He has been pricking his finger to get the drop of blood to test his blood sugar level since he was in kindergarten.