Wednesday, October 1, 2014

Blog - Repost - This is Type 1, This is why we walk.

On October 21, 2014 Justice will have had Type 1 for 6 years, 1/2 his life. On October 25, 2014, we will walk in our 6th walk to cure diabetes.

I won't lie, the donations are scarce. No one has asked if they can tag along, or when the walk is, or what they can do. Not like the years past. I think people think as time goes, on it gets, easier, and we don't need the same amount of support.

That could not be farther from the truth.

I wrote this post a few years back. It is still true.

Please read and share.

Why we walk, and why you need your support, has not changed. Until there is a cure, it will remain true.


THIS  IS TYPE 1:



Where do I begin? I really want to write a powerful post. One that explains everything my heart is feeling.One that compares slightly to the likes of Hallie, Heather, Reyna, Laura, Meri and Renata. One that not only gives you real understanding of what the last 6 days in my house have been like but one that explains that this IS our life.
This isn't just a fluke or a bad day.

This IS TYPE 1 DIABETES.

Just because Justice is running insane numbers some very low some very high,some with ketones, some dropping without a bolus, doesnt mean I am not doing everything I can or should. or that hes doing something wrong. or that hes got the bad kind.

THIS IS TYPE 1 DIABETES.


This is all of us Dmoms and D dads realities. This is all PWDs (Person with Diabetes)reality. I am tired of having to explain over and over again why he cant go to school. why he has to wait to eat or have candy at 7 in the morning. Or peoples reactions to hearing about the rollercoaster we are on. It is NOT our fault. You want to place blame? Hunt down the "germ" that turned their immune systemS against the beta cells which
left it insulinless`(my own word).

THIS IS TYPE 1 DIABETES.

I am tired. I am scared. My heart hurts. My eyes are puffy. My husband for once doesnt know what to say. Justice is upset. He has missed a whole week of school. He hasnt been able to play when he wants or eat breakfast in the morning right away.He feels dizzy, and nauseated. His head is aching and he says all these highs and lows are making him feel like a body made of skin and no bones.He sits and rocks in a corner
LookinG into the distance not aware of whats going on when hes low. He acts like he is having roid rage and will kill anyone that crosses his path when he is high.

THIS IS TYPE 1 DIABETES.

You see his pancreas; a major organ is NOT working. Not because of anything he ate, or we fed him. Not because hes overweight. But because to put it bluntly his immune system failed him. Do I really need to say more?
Do we as a community really need to endure more looks, ignorance and foolish remarks?

A friend George (Ninjabetic.com) said once (adlibbing here)..."Imagine your heart wasnt working. You had to take over the functions of it". IMAGINE THAT. Imagine your childs heart didnt beat correctly,
didnt pump blood correctly. You had to use medical devices to achieve this. But these devices dont work on their own. YOU must work them. You must tweak and adjust them all the time.Nothing stays the same. And one wrong move you could kill your child.

THIS IS TYPE 1 DIABETES.

No no I am not exaggerating. That in a simple nutshell is our lives. Everyday. No breaks. Not for birthdays. Or Christmas. Or New Years. Not for anything. Everyday we must try to balance blood sugars from being too low which could cause a siezure, coma or death right now, with sugars being too high and causing complications later in life such as organ damage,neuropathy, blindness, and again early death. All with machines and medicines that are not by any means perfect. They only work as well as we work them. And there is sadly no exact science.Its not take X amount of insulin a day. Its Ok sugar is 148. Justice is having chicken, rice, broccoli,and yogurt. I must weigh EVERYTHING he eats to calculate the amount of carbohydates in the meal. Wait not done. Then I must calculate per his "dosing calculation" (IC) how much insulin he needs for every X amount of carboydrates. You still with me? Also factoring in if he will be playing, laying down watching tv, or if he is sick. This must be done EVERYTIME he wants to eat or drink something.Yup. When Im tired. When Im sick. When Im paying bills. or cleaning the house. EVERYTIME. Somedays it works and others it doesnt. Some days things are so upside down I swear Im living in an alternate universe.



THIS IS TYPE 1 DIABETES.

We are not asking for your pity. We are asking for your support. Your unwavering and non judging support.we are asking for you to listen. Dont tell us about your friend who has type 2 and started taking pills and is better.or about Hallie Berry reversing her type 1 (thats all bullshit). We know best. We understand this disease better than the media. Better than oprah, Dr Oz and Ricki Lake! Yes I know we dont have talk shows but trust me we could teach this world a thing or ten.

We dont mind your questions. We love it. We encourage it. We are glad you care enough to want to know more. But understand that we are drained. We are tired. We are hurting. Our children are fragile. Yes they are strong but they are still kids. They are still 2, 4, 8 and 16. You know how upset you get when your kid has a bad cold that wont go away right? Well imagine that time 5000000. You want with every fiber of your being to make things better. But you cant.

Please dont say it will be ok. Hes a strong kid. Youre a strong mom. STOP. It adds fuel to the fire that is already burning deep inside of me. We are strong. We have to be. We have no other choice.

THIS IS TYPE 1 DiABETES.

I guess I could have just said EVERYDAY I FEAR LOSING MY CHILD TO A LOW.EVERYDAY I FEAR HE WILL COLLAPSE IN SCHOOL IN THE BATHROOM AND NO ONE WILL BE AROUND TO SEE HIM HAVING A SIEZURE.EVERYDAY I FEAR HE WONT
WAKE UP IN THE MORNING EVEN THOUGH I JUST CHECKED HIM 2 HOURS BEFORE. EVERYDAY I FEAR THESE HIGHS WILL CATCH UP WITH HIM AND TAKE AWAY HIS LEGS OR HIS EYESIGHT. EVERYDAY. EVERY MINUTE. I FEAR MEDICAID WILL BE
TAKEN AWAY AND I WONT HAVE THE MEANS TO KEEP HIM ALIVE.

You know that old saying its a matter of life and death? Well for us,it really is.

THIS IS TYPE 1 DIABETES.





Celebrate With Us!