Parenting with Diabetes: I Taught My Two-Year-Old Daughter How to Be My Caretaker

This content originally appeared on diaTribe. Republished with permission.

By Cherise Shockley

diaTribe Community Manager, Cherise Shockley, shares the story of her diabetes diagnosis and how that diagnosis affected her family

I was diagnosed with latent autoimmune diabetes in adults (or LADA, a type of diabetes between type 1 and type 2) in July 2004, at the age of 23. I was a newlywed, my husband, Scott, was deployed, and I had just finished five-and-a-half years in the Army Reserve. I was placed on oral medication (glipizide), and I began to manage this form of diabetes with diet and exercise, knowing that someday I would require regular insulin for the rest of my life.

In March of 2005, Scott returned from deployment, and a month later we found out I was expecting our first child. Nine months into my diabetes diagnosis, I was carrying my first child; I was temporarily placed on Regular and NPH insulins, because I had to stop taking my oral diabetes medication during pregnancy. At the time, I did not have a continuous glucose monitor (CGM) – the first version of the Dexcom STS wasn’t invented until March 2006,  as my colleagues at diaTribe wrote about here.

My pregnancy was smooth-sailing aside from my diabetes, which took quite a toll on me, but I knew if I did what I could to manage the condition, my little girl would be okay.

Eight months after I gave birth to my daughter, Niya, we said our good-byes to our families and moved from Kansas City, Missouri, to our new duty station in Southern California.

From the time my daughter was one year old, until she was reached two, I was taking oral medication, and my hypoglycemic episodes were few and far between. When I did experience hypoglycemia, I was either at home or at work, and my husband or my coworkers could help me out.

After my daughter turned two, I noticed that my medication was no longer working. With the help of my nurse practitioner, I tried everything in my power to get oral medication to work for me, but it was time to see an endocrinologist.

A few days after my first visit, I met with a nurse practitioner. He told me, “Your beta cells are still present, but we do not want to burn out what little function you have, so I recommend you start taking insulin.” I paused. Although I knew this day was coming, it was like hearing “you have diabetes” all over again.

When we began talking about pump therapy, I asked for something easy to use, knowing that my two-year-old daughter would be my primary caretaker.  I wanted Niya to be able to help me if she needed to.  With my husband working late hours and traveling, we made a decision to teach my daughter how to manage my diabetes. We taught her how to call 9-1-1, how to treat my lows with apple juice, and eventually, how to shut my pump off. In the back of my mind, I wanted her to know how to manage diabetes just in case she received her own diagnosis later in life.

Parenting

Image source: diaTribe

Many parents of children with diabetes share stories of not being able to sleep because they are worried about waking their child up in the middle of the night to check their blood glucose levels. In my family, my daughter was the person I woke up in the middle of the night when I experienced low blood glucose. Before I had a CGM, Niya was the person helping me check my glucose levels and stuffing glucose tabs or candy into my mouth in the middle of the night when my husband was not home.

From the time she was two, my daughter was my primary or secondary caretaker. Scott retired two years ago, so now Niya only helps me out when it’s just the two of us together. If she hears the alarm from my CGM, she asks if I am okay.

I never asked Niya how she felt about her role in helping me manage diabetes; I was nervous to interview my 13-year-old daughter, but I wanted to know how she felt.

Me: How did it feel growing up with a mother with diabetes?

Niya: I was a normal kid. I can eat what I want. I was able to learn how to manage your diabetes and help you when you needed help. I know how to recognize when you are okay.

Me: How old were you when you realized I had diabetes?

Niya: I was four or five. You asked me to film a diabetes video for you.  The hook in the song, “Who has diabetes? Help us stop diabetes,” made me realize that diabetes was a bigger issue. Diabetes was my normal – but the video helped me see that diabetes was also serious.

Me: Was there ever a situation that scared you?

Niya: We recently went to Disney Springs together during Friends for Life. You went really low, and I was scared that you weren’t going to be okay. I didn’t want anything to happen to you when I was with you; I didn’t want to be responsible. Diabetes is a lot of responsibility for a kid, but in some ways, I’m used to it.

Me: That was a scary moment for me, as well. It was the first time in a long time that I was not able to get my blood glucose levels to go up (with glucose tabs or candy). It was important to me to let you shop with your friend while the team at Disney Springs sat with me.

Niya: Thank you for letting me be a kid and not forcing me to live as if I had diabetes. I love you.

Me: Is there anything you would like to say to other children who have parents with diabetes?

Niya: It is sometimes difficult having a parent with diabetes. I now have two parents with diabetes, since my dad has type 2. I want other kids to know that they can navigate it – they will feel extra pressure that other kids don’t feel, but hang in there. When your mother is as special as mine, it’s worth it; diabetes is a big part of my family.

Source: diabetesdaily.com

Este Haim on Burnout + Bolusing for Pizza

This content originally appeared on Beyond Type 1. Republished with permission.

By Todd Boudreaux

Este Haim is the bassist of the pop group Haim, which she formed with her sisters Alana and Danielle in 2007. Este has also been living with type 1 diabetes for nearly 20 years. Last week, Haim announced the release of their new track “Hallelujah,” stating the song is for “anyone struggling with chronic illness.” Beyond Type 1 caught up with Este to ask about the genesis of the track, her life on the road with T1D, and how she faces diabetes burnout with the help of her support system.

A Rough Transition

Freshman year of high school is perhaps the biggest transition in any teenager’s life. For Este Haim, that transition was made all the more difficult by her diagnosis with type 1 diabetes at age 14. Este recalls how difficult it was to fit in given all that she was going through.

“Yeah, it wasn’t a great way to start my first week of high school… I was basically a social pariah for a very long time. You know, I was just the diabetic kid in school that passes out and no one knows why and the diabetic girl that smelled like orange juice all the time.”

Although some of her classmates made life difficult in high school, there are two people Este has always been able to depend on — her sisters Alana and Danielle.

“Not only are they my sisters, I’m also in business with them, so we spend so much time together. We’re on the road together 24 hours a day for weeks on end. So they’ve seen every version of me. They’ve seen me in a good place with diabetes, and in a sh*tty place with diabetes,” Este says.

“I’m lucky that I have Danielle and Alana to be my support and when I am having a bad day, a bad week, a bad month, they’re always the first people to be like, ‘Dude we got you. Whatever you need. We’re going to get through this. Let’s get you a healthy meal. Let’s not have pizza after the show tonight. Let’s go get you something good so that you don’t wake up and your blood sugar is 350.”

Real Talk

“Pizza is such a blessing but it’s also such a curse” — Este’s description of pizza is all too real for anyone who has lived with diabetes.

“After a show, I get so hungry and the only thing that’s available to me is pizza. And we all know that pizza does weird sh*t to blood sugar. It’s this unexplained thing — bread I can bolus for, tomato sauce I can bolus for, cheese I can bolus for, but for some reason when they’re all together it’s this magical thing that I can never get right. It’s insane, what is that? It’s like my favorite food. And of course, it’s the one thing that I really can never get right. It’s hard being on the road and craving food and realizing the only things that are open late are either diners that don’t really have a lot of like salad-y options, or pizza.”

Este’s sisters fully grasp the exhaustion that comes with living with diabetes and have become an amazing support system for her. Their holistic view serves to remind Este that she is more than her diagnosis.

“My sisters have this incredible attitude of, ‘If you’re going to have a bad day, have a bad day, and just live your goddamn life. Tomorrow’s a new day, you get back on the wagon, get back on taking better care of yourself, let’s make some healthier choices. Let’s take a walk around the venue for a little bit, let’s get some exercise.’ And that also takes energy on their part. So I’m thankful that I have them on the road and it’s definitely an integral part of diabetes, is having that support. I’m really lucky.”

Life on the Road

Haim

Image source: Beyond Type 1

Keeping track of blood sugars on a consistent schedule is extremely difficult, and the ups and downs of life on the road can wreak havoc on the ability to maintain glycemic control, of which Este is all too aware.

“It’s being in a different time zone and not being able to sleep and then the stress of that and the cortisol in my blood making my blood sugar rise for no reason. Often, I won’t even know that I’m stressed out, and then I’ll see on my Dexcom that the arrow just goes straight up.”

Having a continuous glucose monitor (CGM) has been a game-changer for Este, not just because it allows her sisters to follow her glucose levels remotely, but also because of what it means to others living with T1D.

“I think awareness is so important and that’s why I wear my Dexcom on my arm now because I have a way of showing people that I am a type 1 diabetic… before I didn’t really have that.”

Diabetes Burnout

Este doesn’t mince words when it comes to the importance of mental health awareness for people living with type 1 diabetes. She is candid about the very real struggles that anyone living with a chronic illness endures over the course of their life.

“I think something that I struggled with, something a lot of people with diabetes struggle with, is perfection. We were taught to look at high blood sugars as a failure. I think that leads to diabetes burnout because you’re constantly trying to be perfect. Mentally, there’s only so much of that you can take without feeling like a failure… And I think that’s been the majority of the reason that I burn out. I’m just like ‘F*ck it, fine, whatever.’”

Haim recently released a new song titled ‘Hallelujah’ and Este posted that her verse in the song was inspired by her struggles living with T1D, specifically calling out the phenomenon of diabetes burnout in her post.

“It’s a lot easier sometimes to just ignore it and not deal with it, but we all know it always catches up with you… I feel like I’ve gone through diabetes burnout — for long periods of time — at least 10 different times in the past 20 years of being a diabetic, and like it’s tough, man. It’s tough to maintain that as a type 1 with chronic illness because there isn’t necessarily a promise that there’s a light at the end of the tunnel, and I said it in my post, it’s like a 24-hour job you can’t clock out of, that you don’t get paid for. Maintaining that mental toughness I think is exhausting for a lot of people.”

Haim

Image source: Beyond Type 1

Looking to the Future

At the end of the day, it all comes back to the support we receive from the people around us. As our discussion wrapped, Este told Beyond Type 1 how important it is to remind those that support us just how appreciated they are.

“The thing that I want to impart to people is to tell our loved ones that support us — that we do appreciate them — and to thank them for being supportive because I don’t know what I would do without my sisters, my parents, my best friends and my boyfriend for that matter… I think it’s really important to find the people that truly love and support you. I know it sounds trite and cliché, but all we can do is look to the future and try and live our best lives and have fun doing it. Enjoy every day as much as you possibly can, and don’t let diabetes get in the way of you doing and achieving everything that you want to do. Truly, that’s all we really can do.”

Source: diabetesdaily.com

Traveling with Type 1 Diabetes: Marrakech, Morocco

Dr. Jody Stanislaw has had type 1 diabetes (T1D) for 39 years and is on an inspiring adventure of living in a new country every month until Sept 2020! She is on a mission to inspire T1Ds everywhere that living a healthy and adventurous life with T1D is 100% possible. This week she is in Morocco. Check out this video of her wandering through this crazy market in Marrakech, with her Dexcom by her side.



Source: diabetesdaily.com

Time Flies! Don’t Wait to Use Your Year-End Insurance Benefits on a New Insulin Pump

Time for a new insulin pump? Regardless of the time of year, with the t:slim X2™ insulin pump, you won’t need to replace it when the next big features arrive. Stacey Simms shares how using your year-end insurance benefits can be your best option to pay less.
Source: diabetesdaily.com

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