What can YOU do to support someone with T1?

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(NaBloPoMo Day 12) 
After posting a few things we DON'T like to hear from non-Diabetic people, I was asked what IS helpful to hear. (Thanks, Jill)

This was my response to her today...

"I think just more understanding is appreciated. Or genuinely wanting to learn and be educated. I always like hearing that people can see how strong we are to be able to handle all that we do. Or just an understanding that we never get sleep at all."


And her response back to me...(I added some boldness for emphasis)

"Thanks Tracy good to know. Sometimes when I hear about all you do I really do wonder if I could do it all and stay sane. I didn't feel like I stayed sane just having 2 kids and working at AZVA, so it really really does seem so amazing to me that you do all that you do, both you and your husband. I honestly did not know much at all about type 1 diabetes, but am slowly learning little by little through your posts. The reason I saw this post was because I clicked on your post about with the video about insulin not being a cure and it took me to your profile page. I still haven't watched that video yet because I can't get it to open on my phone (not at home right now), but just the short comment about insulin being like duct tape was educational in itself. I will watch the whole video later. Little by little you are getting the word out and educating people. I will be praying for you and your family for an abundance of grace and blessings to be upon you. You are fighting a good fight and running a good race, keep up the good work!"


And THIS is exactly what we need to hear for support. Thank you so much Jill. I appreciate your willingness to read and learn little by little. It means a great deal to me and to the other T1 families out there.

Diabetes Fact #12: It is important for families of Diabetic children or the people with Diabetes themselves to genuinely try to understand what we go through, to learn about Diabetes along with us, and to support us through encouraging comments.

Diabetes Fact #11: Diabetes is ALL consuming. It is NOT our life, but it is a HUGE part of it.

Diabetes Fact #10: Parents of children with Diabetes HATE when people say "I could NEVER do it!" when referring to the management of their kid's disease. In reality, YOU could, and WOULD do it if you HAD to. We probably had the same thoughts as you and now look at us, doing it 24/7.

Diabetes Fact #9: The term "Juvenile Diabetes" is outdated. We now call it "T1 Diabetes" or "Insulin Dependent Diabetes". People with this type of Diabetes will NEVER outgrow it. EVER. They will have this relentless disease until a CURE is found.

Diabetes Fact #8: A cure would be great, but a long life without complications is a close second for people with T1 Diabetes.

Diabetes Fact #7: Diabetes kills more people each year than cancer and AIDS combined. It is serious. We NEED a cure!

Diabetes Fact #6: While people with T1 Diabetes strive for blood glucose (BG) numbers from 80-120, it is NOT uncommon to see numbers MUCH lower or MUCH higher. There are SO many factors that go into each number and it is very challenging to see readings that are “in range” for EVERY reading.

Diabetes Fact #5: Type 1 Diabetes strikes 15,000 children every year in the US. That's 40 children per day. On July 10, 2008 The Superhero was one of the 40. Today, it could be YOUR child, or someone you know. This is why it is SO important to take the time to learn about the disease.

Diabetes Fact #4: Type 1 Diabetics may take insulin through syringes, insulin pens, or insulin pumps. What they use is a reflection of their choice and/or finances, NOT disease severity.

Diabetes Fact #3: People with Diabetes CAN eat anything they want as long as they match the carbohydrates with insulin.

Diabetes Fact #2: T1 Diabetes is NOT caused by eating too much sugar or being over weight. It IS an autoimmune disease and cannot be prevented.

Diabetes Fact #1: T1 Diabetes CANNOT be treated with medication. The only way to manage T1 Diabetes is with insulin. Without insulin, T1 Diabetics would die. Period.

*Disclaimer: I am a mom of a T1 Diabetic child. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*

Diabetes Blog Week - Day 3: My Biggest Supporters

Well, I am one of those lucky people who have multiple support people. I cannot pick just 1, so I will list my top 5. If you did not make this list, please don't be offended. If you are reading this, you are in some way a huge support to me. And even with the list of support people, there are times when I feel alone in all of this. When I feel that no one I know "gets it".

With that, here is my list...

1) My husband, The Daddy. He is amazing to say the least. Sure I do most of the adjusting and carb counting (most of the time), BUT he does almost ALL of the night checks. He figures I take the day shift so from the time The Superhero goes to bed until morning, The Daddy is on duty. Sometimes I will take the 2am check, but I usually end up making him get out of bed to check anyway. He checks the BG/Dexie and makes the decision on what needs to be done. Is The Superhero high? Low? Just right, needs monitoring?

The Daddy has also started taking over some/most of the site changes for the pump. I will admit I was getting a little lazy and as long as we were getting good numbers, I would not change the pump for 4, 5, even 6 days a few times. I knew this was not ok, I just could not make myself do it. I was in a Diabetes rut if you will. So now it is The Daddy’s job, unless one gets pulled out early (like yesterday).

He also is the one to stay in the hospital with The Superhero. He stayed with The Superhero when he was diagnosed and again when he was in the hospital in October and in February. I don’t know how I could do any of this without him. So, THANK YOU to my awesome hubby!

2) My younger brother, S.. When The Superhero was dx S. was at the hospital everyday. He learned how to check BG and even how to give a shot. Though he does not watch The Superhero much now, he is not afraid to give him insulin or check his BG. I would completely trust S. to take care of The Superhero.

And a side note…One night my mom and S. were watching the kids while I did a work event. The Superhero was in the middle of (we thought he was over) a stomach bug. He threw up while at my mom’s house and S. did not freak out. They dealt with it and moved on. I am very impressed with this!

3) My mom. Though she was very reluctant when The Superhero was first dx to do any of the D care, she has really turned around over the last 2 years (almost). Once we got Dexie she felt better about bolusing The Superhero with his pump meter because she was able to watch what was happening with his BG. She is a HUGE help when I need to take just The Princess somewhere or when I just need a BREAK from The Superhero.

My mom was also a HUGE help when The Superhero was diagnosed. I was pregnant with The Princess and NEEDED my sleep, but I also did not want to leave my baby in the PICU with just his Daddy (no offense to The Daddy). The Superhero wanted a “mommy” comfort (he liked the boobs for a pillow). So, my mom offered to stay those nights in the PICU with him. I would go home around 10pm and she would stay. I would come back at 6am or so and she would go home to sleep and then return in the late afternoon. I don’t know how we would have gotten through that week without her!

4) My Dad. Next to my husband, my dad is definitely the biggest support I could ask for. He was online on the Children with Diabetes site while we were still in the hospital and is still a poster on that site. He was at the hospital everyday with me. The Daddy and my mom would go home to sleep/shower/etc and my dad would stay with me. He took the crash course in Diabetes care right along with me. He has done everything he can to learn about Diabetes and how it affects The Superhero and the rest of us. He has learned how to care for The Superhero completely. He has gone to ALL (except one) Endo appointments with me. He was there for pump start. He was there for CGMS start. He can change a pump site when needed. I am sure he could figure out the CGMS if he needed to. He counts carbs, treats lows, gives insulin for highs, watches for extra activity, and does everything I would do if The Superhero were with me.

I feel SO comfortable leaving The Superhero with him. The Superhero has been able to spend the night with my parents many times since diagnosis and I don’t worry at all about his care. He gets up to do the night checks with no problem. When I have work meetings, my dad takes off work so he can watch The Superhero. (my mom could do it, but with both kids, they are CRAZY) I never have to worry about who is watching him. When he is in my parents’ care, I don’t even need to know what is going on. I know they can handle whatever Diabetes throws their way.

5) My D.O.C. friends…you know who you are. You all are THE BEST support I could ask for. Having so many other D- Moms (and dads) who really and truly “get it” is AMAZING. My life truly changed for the better when I “met” all of you. I love you all!

I have no idea how I would do any of this without all of these amazing people in my life. I hate diabetes, but I am so grateful for ALL of you!