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Saturday, June 29, 2013

chronic pain in children...

Here is a fantastic book my daughter's rheumotologist gave us. I was disheartened at first. Why was she handing me a book on chronic pain in children. I was still in seeking-mode...finding a solution as to what was causing my daughter so much pain. And then the fear in the back of my head came to the forefront.

What I feared was that this situation had turned into a chronic pain issue...which is a disease in and of itself. And as the doctor handed me this book she said..."Yes, you need to consider this a chronic pain condition..." SIGH

However, the book is wonderul. It provides explanations for why something becomes chronic pain...think of it like this.

Whenever you have a problem on your computer and you get that blue screen saying fatal error. It isn't a problem with your system's hardware or the computer itself. It is a problem with your computer's software. Liken that to the human body and since there isn't a diagonsis for my daughter's condition as of yet, there is nothing wrong with her body (the hardware) itself...or there is we just don't have the answer to that right now. But her software has become faulty. Her pain nerves (the software) have been switched on and will not switch off. There is no breaker right now to turn off that switch so she suffers unrelenting burning/stabbing pain which is the hallmark of chronic pain.

I believe there is something to this because her first bout of this pain was 8 months ago. This is her 4th bout and this time it never left. Her switch got turned on and stayed on. Until a diagnosis can be made I have pleaded with the doctors to help me manage her pain. There is a huge lack of any kind of research or understanding of pain in children. In fact just a little over 20 years ago it was believed that children and newborns didn't suffer pain the way adults do. Babies weren't given anesthesia when procedures were done because it was believed they felt no pain. Can't even wrap my brain around that one.

So rather than being disheartened I am now happy that I have been given my first tool in helping my daughter manage her chronic pain. Here it is:

Friday, June 28, 2013

climb out of the darkness...

Wanted to share this from Katherine Stone and her blog Postpartum Progress. Great fundraiser for a great nonprofit!