Happy D-Blog Day!
This year’s topic is: 6 things you want people to know about diabetes....
1. Just because my daughter is diabetic doesn't mean she can't have that cupcake or ice cream cone. She CAN eat sweets but she just has to give herself the insulin to cover the carbs in those sweets. PLEASE do NOT tell her she can't have those sweets and hurt her feelings. She does have feelings like any normal person does...and thats all she wants to be is...NORMAL!
2. Type 1 is NOT the same is Type 2 so unless you know the difference then I really don't want to hear about your Great Aunt So&So that got her toes amputated and your Great Grandaddy So&So that didn't watch his sugar and lost his eyesight. The long term complications run through my mind almost daily and I don't need to hear that you "know how it feels" because unless you're a Type 1 diabetic, parent of a Type 1 diabetic or in daily direct contact of a Type 1 diabetic then you don't know how it feels. The one thing that would make me happy is for you to learn the difference between Type 1 and Type 2.
3. Insulin is NOT a cure! I can't put it much plainer terms than that. My daughter is connected to an insulin pump 24/7 and has to count ever single carb that goes into her mouth and give herself the insulin for it. Insulin does not cure her diabetes...it keeps her ALIVE! Without insulin she would die within just a few days. Her blood sugar would go so high that she'd go into a diabetic coma and all her organs would shut down. The best thing you can do is donate to JDRF to help us continue to research for a cure. One day I hope to say...Kacey USED TO HAVE Type 1 diabetes.
4. Once you're the parent of a Type 1 diabetic, you NEVER rest! When you leave the hospital with your Type 1 diabetic, it's like leaving with a newborn all over again. Only this time, it's like they never get older. You constantly worry! You go into their rooms at night or first thing in the morning and you hold your breath and check to see if they are breathing. You prick their fingers and pray for good numbers. You never leave the house without a bag of some sort that is packed with meters, snacks, juice boxes, wipes, bandaids, glucagon, insulin, infusion set changes, needles, notepad, pen, glucose tabs along with anything else you can think of that you're going to need while you're out. It's like carrying around a permanent diaper bag! You lose countless hours of sleep...checking blood sugars...taking care of lows...worrying about highs. Your brain becomes a mangled mess of scrambled eggs as you are consumed with numbers. Your day as the parent of a Type 1 diabetic NEVER ends. You long for the days when you could sleep through the night without waking up out of a dead sleep in a panic because you forgot to set the alarm or because you reached over and shut it off in your sleep. All you want is an hour to get a nice hot bubble bath without someone knocking on the door and saying "Mom, I'm low!" or "Mom, my tummy hurts cuz my sugar is a 458 and I feel like I have to throw up." Yes my friends, this is true! A D-Mom NEVER rests....NEVER! Even when we're given the time to chill out and clear our heads...we are still never really resting!
5. Life with Type 1 diabetes does get easier. I know some of you probably think I'm nuts. Geesh she just finished telling us how she never rests and how hard life with diabetes is...but yes it gets easier. You seem to settle into a new normal. You life with diabetes adjusts and those every day worries just become something you normally do every single day. I remember how many "Mommy Meltdowns" that I used to have when Kacey was first diagnosed in July 2008. Here we are over 2 years later and I might have one or two a month now and they aren't nearly as tough as they used to be. I remember crying for days and hours on end. I don't have the tears as much as I do the anger for diabetes trying to control Kacey. For Kacey, it's just her way of life now. She doesn't remember life before diabetes anymore. I know, it's hard to think about it. She was only 8 when she was diagnosed and it's been over 2 years but she really doesn't remember life before her diagnosis. Is that good? Yes and no. I think it's better for her that she doesn't because this is all she knows now. This IS her way of life and she doesn't have to be sad about the days before diagnosed when she could grab a handful of goldfish and not have to check her sugar and give herself insulin for them....oh yeah, and don't forget to count them! It's just something she does now...her new normal. Some days I sit and watch her...she does so much of her care on her own now. She doesn't want us helping her but there are those days that I stop to watch. She sits down with her plate...checks her blood sugar...counts up the carbs by each thing on her plate...adds them all together with the cute little notepad she carries with her...plugs that into her pump....smiles as she puts Goober away...and begins to eat! All of that just so she can put food in her mouth. And you know what? She does it all with a smile! Even if her blood sugar is 300+ ...she grumbles a second over the number...and then goes on about her eating.
6. PUMP LIFE ROCKS!! If Kacey has to be a Type 1 diabetic and she has to give herself insulin every single time she eats...then why not choose the easiest way possible for her? In March 2009, our lives were changed completely when she got her insulin pump. Now, don't get me wrong...I understand that pumping isn't for everyone....but it was for us! It's exactly what Kacey needed to become her own little person. You see, before we got her pump, Kacey was up to 8-10 shots a day. EVERY single time she wanted something to eat...each meal...each snack...no matter how little or how big...she HAD to give herself insulin. Kacey was 8 when she was diagnosed and just 3 short months after being diagnosed, she started giving herself her own injections. Pretty dang good for an 8yr old. She was doing her finger sticks and figuring up her own dose and getting it right every time. She didn't want anyone giving the injections to her so she did them herself. Before pump life, we had to carry a notepad and calculator everywhere. This is where I can tell you...I hated Math in school...absolutely HATED it! Then when Kacey was diagnosed, I had to use Math to keep my child alive. How's that for some punishment? LOL! So, for instance, Kacey wanted to have lunch and you had added all the carbs up and it was 45 carbs. Her insulin to carb ratio was different for each meal. Breakfast is 1:8...Lunch is 1:10....Dinner is 1:12 and Snack is 1:10. OK...so this is Lunch... 1:10. She'd get one unit of insulin for every 10 carbs. So 45 divided by 10 is 4.5 units but Kacey was on the insulin pens so they only dose in whole units. BUT then you see her blood sugar is a 340. So now you have to give her a correction do (Blood Sugar) minus 150 divided by 50 = X units. So 340-150 divided by 50= 3.0 units. Then that has to be added to her food dose.... 4.5 + 3.0 = 7.5 units. Now, are you going to give her 7.0 or 8.0? It's hard because you have to know what the rest of her day is going to be like after lunch. Will she go lay down and watch a movie? Then give her 8.0 units since she won't have any activity. Will she go out for recess and run around? Then give her 7.0 units and hope she doesn't spike up. Yep, it was hard and yep she figured all of this out on her own at 8 years old! She used to amaze everyone around her and by the time she got to 4th grade and her teacher was teaching math equasions like these, she was already a pro and wow'd her teacher! BUT...it was hard! If you didn't have the calculator then you had to do it by hand on paper and pray you did it right! Now...her pump does all the figuring :) We have the freedom to go places without calculators and pens. She has the freedom to each what she wants, when she wants. She doesn't have to do that nasty dreaded dose of Lantus that would burn her bottom when we injected it. She could have her independance back. The freedom to be able to eat without someone seeing her give herself an injection. The freedom to count carbs and plug them into her pump. Those are the only numbers she had to be consumed with. She was able to be just "Kacey" again and not "Kacey with diabetes". She gained the freedom to tell or not tell those friends around her. I've watched her grow into a very responsible 10 year old and I can only hope and pray she continues to be like this.
So my friends, those are just 6 things I can tell you about diabetes. I could go on and on but I'm sure the rest of the D-Blog world is gonna cover almost every single base as they blog about their 6 things. You can read more blogs and their 6 things HERE. Thanks for letting me share!
Happy D-Blogging!
4 comments:
Hello Jill,
my name is Britta and I am a german D-Mum.
I´ve read your post and ...yes, this is my life too!!
In April 2007 my girl was diagnostic typ 1 (also 8 years old) and she wear an insulin pump since the second day of her "new" life.
It´s much easier with the pump, but every day is a new challenge.
Britta
So happy to see you blogging...I miss my regular doses of JILL.
Awesome list, my friend. You've come a long way baby!
Nice list Jill....I can relate TOTALLY to a lot of it!!!
Especially the never rest part!
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