Teens with Diabetes and Driving Event

Driving Cars in a Traffic Jam (Photo credit: epSos.de)

I had the pleasure of attending the JD No Limits event Check B4U Drive last week with my 14-year-old son.  The morning started out with the agony of getting my 14-year-old up early on a Saturday.   He is notoriously awful in the morning and this was no exception, he did come close to getting either cold water poured on him or by suggestions on Facebook some toothpaste in his face.  Lucky for him he finally got himself motivated to get into the car to nap until we arrived.

This event was provided by JD No Limits a non-profit organization whose mission is to provide motivation and support for individuals living with Type 1 Diabetes.  Part of their mission has been to provide for Teens with Diabetes a Safe Driver program.  This program is extremely important to the founding members. Many with connections to Type 1 Diabetes, racing and unfortunate experiences with driving while low.

Our day started by checking in and meting one of the driving instructors to do a safety check of our car.  Thankfully I had just had new tires placed on the car about a month ago.  We learned about tread depth and he taught Brandon how to check the tire pressure and open the hood of the car.  I think that this is the first time my son has ever done any of these tasks!

We moved into the classroom where we met the driving instructors, who were awesome with backgrounds in race car driving, training and military tactical driving.  Along with nerves of STEEL!

We also met Amy the Certified Diabetes Educator, who has an amazing ability to connect with teens with diabetes.  Teen driving is a privilege and having diabetes adds an additional layer of safety to consider.  Amy was able to share information about the importance of testing before you drive and got them talking. She gave them the time and the safe space for them to talk openly about being a teen with diabetes.  They shared their stories of how teachers and friends sometimes just don’t get it.

Then the fun stuff!  We went out side and the kids all piled into cars with an instructor.  They took turns driving, through obstacle courses, learning how to stop on a dime, breaking on slick surfaces and how to avoid an accident.  It was great to watch the kids speed down the enclosed course and stomp on the breaks, run over orange cones and get better with each pass.

This was an amazing day the kids learned valuable skills and how to stay safe while driving.  There was more to the day then this.  Being able to connect with other kids that understand the pressure they are under to perform in school or in sports and the pressure of managing a disease that other kids their age do not have to contend with was priceless.

There are moments when T1D feels isolating to kids and parents and events such as this are ways for us to connect and recharge and know we are not in this alone.  Thank you for a wonderful day!

To learn more about this program please visit http://www.jdnolimits.org 

 

Caregiver Blues

English: C Jazz Blues (Photo credit: Wikipedia)

I have been wanting to write about this feeling that I have had over the past few weeks.  However, part of me is very reluctant to share what I am feeling.  In part I am afraid that people will judge me and in part I am ashamed that I feel the way that I do.

So please bare with me as I search for the right words to use to adequately explain the emotions and feelings turning inside.

Lately it has been a struggle to keep my son on track with his diabetes care.  Don’t get me wrong we have made many strides in getting to a better place but it has been a struggle.  In my efforts to help him to be well I often get frustrated by his unwillingness to take care of himself.  I sometimes get down right pissed off that he gets upset with me when I bring the meter to him or prepare his insulin for him.

This is where I beat myself up.  I know that this has been an even more difficult transition for him.  Anger for getting a diagnosis that has no cure and will be with him for the rest of his life.  That even when I am not here for him that he will have to take care of this health on his own.  That sucks.  I know that he has days when he is tired of this disease and that he wants to hide from it.  I also know that I am the only parent he has to help him through this and I am the one person he can show his true emotions to.  I also know that he is a 14 year old boy.  Still a kid, that has not developed all the skills to take care of himself.

Having that knowledge sometimes does not help, because sometimes it makes me mad, and sometimes it pisses me off when he doesn’t care for himself and sometimes it hurts to see him hurt and sometimes it frustrates me that I am the only one taking on his care.

I would love to say that I am a picture perfect parent when it comes to helping him manage his diabetes and emotions.  I am not.  I try my best with what I have but it is a struggle as a single parent to make it all work. It is really tough to know how to help him and to know when to push him.

This is a dark time in my life and I know that others have been here before me but I am not sure that we openly talk about the feelings we have as a caregiver.  I know that I am hesitating to post this because I am afraid that I will be harshly judged.  The feelings that I have can’t be mine alone, but because they are not positive in relation to what I feel I am supposed to feel as a caregiver I do feel alone and not understood.

Research Study: What Do You Wish Health Care Professionals Knew?

[Hey guys.  This post was not written by me, but was instead copied and pasted.  I found this post on the six until me blog.  I felt that this is such important info that I wanted to share and decided that it was best to share by copy and paste.  I do think it is important for us to all be involved in opening the doors of communication.  SO please read on and consider being a part of this!  It’s more streamlined and professional, and I didn’t want to toss it out there without some kind of explanation or positioning.  Take a look, read through, and please do participate if you’re inclined.  Also, please share this post if you’d like to help highlight this effort.  It’s a very cool study aiming to take a look at how HCPs can learn from communities like the DOC, and I’m looking forward to seeing the results.)  

A researcher in a medical school in Quebec City, Canada (who is type 1 herself) is doing a study about how health care professionals might learn from online communities of people living with conditions like diabetes.

I have been collaborating with her on this study since November 2012. Other people in the DOC are involved, too. I encourage you to participate in the study and to spread the invitation to be a part of this.

This study is open to anyone who has personal experience with diabetes. You may have type 1, type 2, LADA, gestational diabetes, or another type. You might have diabetes yourself or you might be a family member or friend of someone with diabetes.

Tell us what you wish that health care professionals (doctors, nurses, dietitians, physiotherapists, counselors, you name it) understood better about diabetes.

If you want to participate, sometime in the next two weeks, put up a blog post or post a video, and then post a link to it here: click this link for the study.  Tell us what you wish health care professionals knew!

After the two weeks are over, we will ask you to vote to help us prioritize which ones we should show to health care professionals first.

If you have questions about the study, contact Dr. Holly Witteman, PhD, the lead researcher on the study, or Dr. Selma Chipenda-Dansokho, PhD, the research professional running the study.

 

Rasing Teens with Diabetes: A Survival Guide for Parents – A Book Review

A few weeks ago I wrote a post about watching Author Moira McCarthy on Tu-Diabetes during a video chat.  In this post I talked about how I cried while watching this video chat.  It was the first time in a year and a half that I felt at ease about caring for my son with Type 1 Diabetes.  I felt at ease and understood by a fellow mom who has been in the trenches before. 

This mom talking to me understood the anxiety that I felt when my son would lie to me about taking his blood glucose or even taking his insulin.  She also reassured me that this was normal!

I have been reading this book and if you were to see the book it is already dog eared and written in and pages wrinkled.  To me this is the sign of a really awesome book!  This means I have gotten a lot out of this book. 

Moira has written a book that is easy to read and very entertaining.  Moira shares in each chapter stories from her own life and trials with her family as they walked through Type 1 Diabetes with her daughter Lauren.  This book offers practical wisdom on how to communicate with your teenager with diabetes and also with your other children that do not have diabetes.  She even covers the topics that we tend to shy away from such as driving, drinking and…..Sex. 

The advice that Moira gives is given in a way that is light, funny and thoughtful.  Throughout the book you will find vignettes that feature thoughts by her daughter Lauren, other experts in the field and other parents and their experiences.  Even if you do not have the time to read a whole chapter these additions make it easy to find an answer you have been looking for.

Let me tell you that I feel strongly that this should be the “bible” for parents of teens with diabetes and it should be handed to you in a blue velvet covered box that says take this daily with insulin and blood checks!!! 

To learn more about Moira and her book tune in to Conversations In Care to hear her interview.

Moira McCarthy is an acclaimed writer, author and public speaker.  She was recently recognized as the JDRF International Volunteer of the Year.  Her books include the top-selling Everything Parents Guide to Juvenile Diabetes.

 

 

Diabetes Hope Conference

Yesterday, I joined the diabetes community by watching the Diabetes Hope Conference.  This virtual conference was at times difficult for me to watch.  Please let me explain.  As most of you know my son was diagnosed at the age of 12 a little over a year ago.  As a single mom, this past year and his new way of life has been one of survival.  Some day’s feeling like we barely survived.

I did not have time to think about the ever lurking complications that diabetes brings.  To be a little more honest I know that I have not let myself feel the scary feelings of what could happen to my son in the future.

The crew from TuDibaetes – Manny, Emily and Mike were very transparent and sincere with their comments, which led me to attempt to feel fully my emotions of what my son could possibly face in the future.  Their honesty was refreshing in that they truly explored the fear and anxiety that many face with this disease but worked without effort to share that they too don’t wish to think about complications.

This virtual conference gave me an understanding that hope in regard to Type 1 Diabetes is not in the belief that my son will be free of complications in his life, but hope being an understanding that he will be surrounded by a community that will support, encourage and uplift him in his journey.

Emily Coles of TuDiabetes shares her thoughts on this subject in this post.

 

Adventures in Traveling with Type 1 Diabetes

Adventures in Traveling with Type 1 Diabetes

In January I launched a radio program on Blog Talk Radio called Conversations In Care.  Once a month I feature stories and information about Type 1 Diabetes.  I decided to do this because being new to this disease I know how much we just don’t know or understand.  I also wanted to include a way for us as parents, and those with Type 1 Diabetes a place to connect.  To know and understand that you are not alone in this adventure.  

Yesterday, I had the pleasure of having Michelle Weisenburg, mom (CIO – Chief Insulin Officer) to Jordan who was 9 when he was diagnosed and is currently 15 and about to get his driving permit.  We had a wonderful conversation about being a parent, wishing we paid more attention in math class and tips on how to travel well with Type 1 Diabetes.

I had so much fun with her on the show that I want to have her as a regular.  There are so many things to talk about that I am sure I can convince her.  

Listen in and Enjoy!

Middle Finger

This has been a really tough year one that has tested not only my patience but my strength.  Brandon has struggled with accepting diabetes and he has spent many months angry.  Frankly, I have spent many months angry.  Diabetes stole from me this super funny kid that laughed and joked and left me with this kid that slammed doors, and cursed and broke plates.

During this time there were days that Brandon refused to test his blood sugar and take his insulin.  His therapist suggested some extreme forms of getting him to be compliant.  Things I was not ready to do and struggled with.  I wrestled with the ideas she gave me and the kid that I know.  A sweet boy that is uber funny.  When spoken to gently can be reasoned with.  One that I knew was trying in his own way to come to terms with what life just dealt him.

I on the other hand was dealing with increasing anxiety of making sure that my son would not die.  That he would not damage his body with the highs.  This anxiety took over.  This anxiety made me angry when he would not take his insulin because I was scared that he would die, that he would cause damage because of the highs.

It took time and patience, it still takes time and patience.  And by the expectations of his therapists he may not be making the progress that they would like him to make, but he is making progress.  What makes me believe that he is making progress other than the lowering of numbers?  Let me tell you.

About two weeks ago I went into his room to wake him up for school and take his blood sugar.  This is a task that I need to be throughly prepared for.  I learned quickly not to sit by his legs during this new morning ritual.  He rolled over and stuck his hand from underneath his blanket.  “Hey bub, what finger do you want me to prick.”  Remember he is still under the blanket except for his hand, facing the opposite direction.  He slowly pulled back four fingers to revel his middle finger.  There it was, his humor.  It’s back. Giving Diabetes the middle finger was absolutely priceless to me.

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Work, Anxiety and Ex’s

I remember being shuffled into the hospital room and the many doctors and nurses coming in and out of the room getting Brandon settled in to his new safe place for the next four days.  While this was happening and while I was trying to understand and process how our world was changing,  I remember thinking how am I going to do this?  I am barely making it.  With working all day and sometimes really long hours, how am I going to make sure that he gets what he needs and that he is getting the proper doses and wil he take his insulin while I am gone?

I thought to myself how am I going to make this work?  I have to work and I have to take care of my son.

My job and the needs of my son were consistently competing.  I always felt guilty, a constant gut wrenching anxiety over took me. I felt guilty because I had to work and during the summer Brandon’s A1C skyrocketed.  I felt bad that I had to call off of work or skip a networking event because of my son.  The tugging at my heart of making money to put food on the table and getting my son to all of his appointments and being there to monitor and make sure that he received the insulin he needed was making me sick.

As a single parent there is always that struggle to strike the right balance of being at home with your children and keeping your job.  I remember when the kids were younger that constant feeling of failure was with me every day.  When the kids got older and were able to do things on their own I felt a little more at ease.  However, the anxiety returned that day in the hospital when the staff was floating around us.  How am I going to do this?

I would like to say that my ex-husband is highly involved with his children and knows what is going on with Brandon’s care.  I would like to say that he is my support team as we wonder along this path of diabetes.  He did make a valiant attempt in February to say that he would be there when he was sick or needed to go to the doctor.  The really sad fact is that he has not been around.  He doesn’t even know all the changes Brandon has been through with his insulin or that he did a saline trial with an insulin pump and he determined that he didn’t like it.  He hasn’t even talked to his children since July.

When I look back at all that we have been through since February I look at my son and see how he has struggled and how he has triumphed.  I see the days when he is sad and frustrated and the days he feels like he is a champ.  Through all my anxiety and worry I am the one that holds his hand when he is scared and chokes back tears to show him how to be brave.  No matter how hard this journey is or how tired I become I know that I get to experience this with him and watch him grow every day into a super brave and confident young man.  This is what helps me to make it work (along with phone calls to my best friend and daily conversations with my higher power.)

Every ex-spouse has a reason that they divorced and often we have negative feelings toward our ex’s.  We often curse them under our breath.  I have felt and done all of those, but interesting enough the feeling I have for my ex husband is sadness.  I am sad that he does not get to see Brandon grow and develop in to the wonderful human being he is becoming.

 

 

What I am thankful for today!

What I am thankful for today. I am thankful for my 5th grade math teacher for staying after school to help me understand math. I am thankful for Debby Davidson for tutoring me endless hours to help me understand math! I hated it and cried over math nightly. I am thankful that they spent so much time helping me to understand math because if I did not understand math I would not be able to calculate insulin dosages for my son!

This was the post I posted on my Facebook page a couple of days ago.  Over the past 9 months I have used math more than I think have in a really long time.  Dividing and subtracting and calculating the doses of insulin for my son.  I read somewhere that Juvenile Diabetes is the disease of burnout.  Because the person with the disease and their caregivers never get a break from the disease.  I know for me as my sons caregiver, that the math is that part of the disease that wears me out!  I struggled with math my entire life and had teachers stay with me after school to make sure that I understood the basics.  My parents hired a neighbor who was going to college for education to spend time with me every night to help me get through all my math studies.  I do remember how torturous this felt to me at the time.  I remember the tears and the frustration.

I remember some of the initial thoughts that I had while in the hospital with my son the first day.  We were learning how to calculate how much insulin Brandon would need.  I remember our Diabetes Educator pulling out plastic food and telling us how many carbs each piece of food had and how to add up the carbs and how to divide them by the number that was indicated for Brandon on the sliding scale.  Then we talked abut the correction dose.  This needed to be calculated a different way.  WHAT!  It was too much for my right brained creative mind to handle!  That is when I began to understand why this is a disease of burnout.  For me it is the math.  I am always excited when it comes time for Brandon’s long acting insulin – no calculations just the dosage the nurse told us to take.

Needless to say today I wish I knew where Mr. Sheets lived so that I could personally thank him for not giving up on me and helping me through 5th grade math.  Somehow he knew that I would need math in my life.

 

2.1.2012

This is the day that we learned that my 12 year old son was diagnosed with Type 1 Diabetes.  The next 4 days were spent at Children’s Memorial Hospital in Chicago.  I am not sure that I remember much of what happened in those four days.  I do remember the amazing changes that happened when insulin entered my sons body.  He perked up.  There was color in his cheeks when there wasn’t any before and the circles under his eyes, poof they were gone.  

He was amazing, he listened as the dietitian taught us how to count carbs and how our diabetes educator taught us how to manage the disease and how to calculate his insulin.  Within that first day he was giving himself injections and had mastered the math.  He was adapting to his new life.   

The past 6 months have been challenging and life changing.  This is our journey.