Monday, January 16, 2012

Excuse me while I rant

Having a child diagnosed with type 1 diabetes is heartbreaking and frustrating. Truthfully, I was ignorant to the disease.  I didn't realize there are two kinds of diabetes. When Addy got sick and doctors confirmed she had Type 1 Juvenile Diabetes, I became a overprotective mother that found herself getting angry at people who didn't understand the disease.  People would say things like:

 "she will grow out of it"
"all she does is have to take a pill right?" 
"I'm sorry you are going through this, but its really not that bad, its not like it is life threatening"
The best one was when a friend of Evelyn's asked her mother why Addy had to wear a pump. Her mother in return told her that "she ate too much bad food and that she can stop wearing the pump when she starts eating healthier". 

..............................(Let me pause while I calm down and wipe the tears)...................................... 

But really, how would I expect people to understand what Type 1 Diabetes was if I didn't know it existed until it was in our face smiling back up at us? Ok, maybe not smiling. More like crying, laying on the floor, barely speaking, pointing to her stomach in pain, going from the water in the refrigerator straight to the bathroom and not making it, all while staring through us with a a glossy-eyed blank face.

Type 1 is a disease in which your immune system attacks the cells that make insulin, a hormone needed to control blood sugar levels.  As a result, your body cannot make insulin.  Without insulin, too much sugar stays in your blood. There's no magic pill that can change it or a special diet that can reverse it. It is their new life.

The truth, is I get angry they even call it diabetes. It has such a stigma. A preconceived idea that just change her diet and it can be reversed.  Well, it can't.  This isn't Type 2 Diabetes.  There is NO cure. The ONLY thing is insulin.  It is her life saving med.  Even a dose of insulin cant give us controlled blood sugar.  There are too many other factors: how many carbs she ate, how active she is, how much water she drank, if she is fighting a cold or virus, if she is stressed (yes, believe it) if she is going through hormonal changes, stomach bugs...and the list goes on.

I wish they would change the name of the disease, maybe Pancreas Impairment or Pancreatic Disease. Or better yet, this: (I LOVE IT!!!!)

 CRAP stands for "Catastrophic Ruthless Attack on the Pancreas"

It's rumored that someone started a Google bombing campaign to replace Google's normal results for the word CRAP with the ADA page for Type 1 diabetes. This was done as a protest against the ongoing problem that the media has in distinguishing betweenType 1 and Type 2 diabetes. 

To quote a top ADA official (name withheld) "If this disease renaming continues we'll be forced to change current medical texts so they now refer to the two primary types of diabetes as CRAP and Type 2. And what happens if someone then decides to rename Type 2 to Number 2? Imagine the confusion."They fail to recognize that many people, including many media people, are already confused so much that they don't even realize there are two main forms of diabetes that are radically different to one another. Perhaps this renaming will clear things up - a bit.

Yes, I like that very much.

1 comment:

Chelle Race said...

Wow, Tracy - I didn't even know you had a Blog! I'm ashamed to admit I'm one of those people without much knowledge of type 1, though I've learned a LOT more by reading your fundraising page for the walk last year and now this Blog... Your "rants" are well deserved and serving an even higher purpose than just that - educating people! You've got me on board with wanting to see a difference. "Rant" away, girlfriend!