Wish, Hope and Pray for a CURE!
Thank you for being so honest.
Don’t know if you’ve ever had to deal with the initial pity party. You know, when you say, “I have diabetes,” and then the person says, “Oh, I’m so sorry!” When they proceed to ask the details that go as deep as “How long have you had it?” and you say, “Oh for about 21 years now,” they suddenly change their mind about you.
Look, I’ve been around it all my life, have had to deal with shots and not being able to eat certain things. I’ve had high blood sugars and low blood sugars, have cried because of low blood sugar, have drank like a camel because of high blood sugar and I’m just fine. I don’t need your pity party or the fact that you’re sorry for me.
I got a question, though, one time about coping. How did I cope? I don’t know if I ever fully…
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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
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.
2:00am seems to be some magical hour. Or it is the standard hour that all broken pancrei (not really sure that is a word – but a fellow DBlogger used it so I am sure that is in the dictionary, if not on Webster’s list to be added to the dictionary next year).
It is the hour in which I wake up to test my sons blood sugar. It is actually 2:00am right now, maybe not in your part of town, but here in North West Indiana it is. Like so many D Moms and Dads. I am not sure what a full 8 hours of sleep looks like any more. I was hopeful that tonight I might get about 3 maybe 4 hours straight. However, I do not think that is going to happen. I tested his blood sugar and he was at 80.
Now technically this is a very Awesome and wonderful number, but for my son this is a number that is as rare as a purple zebra. (He must have been in my dreams, otherwise why would I say Purple Zebra?) It is a number that neither myself or Bubba are comfortable with. I gave him one glucose tab just to bring him up a tad to hopefully nudge his numbers up a bit, turn them around.
Hold n a second….
Yep, it turned it around just enough. To give me a little comfort to go back to sleep for a couple of hours.
Sweet dreams…. Haha that is funny. I hope my dreams are laced with a cure for jump starting the pancreas.
[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.
Follow up blog post from yesterday’s #dblogcheck.
Christopher Snider of A Consequence of Hypoglycemia has made a move in the D community to ask all of us to check in when we have read a post.
I started writing this blog as a way for me to deal with our first year. My son was diagnosed last year with Type 1 Diabetes and as a single mom in a new area I was not able to find support. I started with my blog, then I added a segment to my radio program Conversations In Care so that I could learn more and as a way to find a support network.
To my delight I found a robust community of D Bloggers that share their heart and soul and provide much needed ways to connect to others and information.
My hope has always been to connect with others and share information and help to create a stronger Diabetes Online Community (DOC).
So when you are out there reading today no need for a long comment, just a quick Hi or Check will do.
Looking for some great blogs? Check out some of my favorites:
- A Consequence of Hypoglycemia
- Scott’s Diabetes
- Despite Diabetes
- D-Mom Blog
- Rolling In The D
- Diabetes Social Media Advocacy
- Tu Diabetes
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.