My dilemma

Having read the journal entry from Tony's daughter one thing jumps out at me. I've heard from many RSD sufferers that aggressive PT doesn't help. Here I am waiting to get Emily into a rehab center that could potentially irritate her condition.

One of the biggest issues I'm facing right now and what all RSD patients deal with is that we don't get given a clear path. No one around me has the answers that I want. Not one of Emily's doctors can tell me the best treatment, to me it seems to be just a shot in the dark. As Emily's Mum this just isn't good enough. What am I supposed to do to help my child? This is the worst form of torture that you can get. Stand by and watch your child go through hell and the whole time you can't do a thing to help. You can't hold them and tell them everything will be ok. You don't have the answers to the puzzle. Isn't it our job as parents to take away the pain?

My job has become slightly different. I do everything in my power everyday to show Emily the things she CAN do. The stuff I type on here about how I really feel is almost completely undetectable to the human eye unless you look closely at the shadows under my eyes which have been carefully deleted with make up. You would never know. Don't ask me how I feel in front of Emily. All of my friends by now know this. No negative talk in front of my child in fact keep your negative questions to yourself. I have withdrawn from many including family members because the support was either absent or harmful. My job has become one of damage limitations, I try to limit the damage to Emily mentally but training people around her to act the same as they once did. Emily's central nervous system is tricking her body into thinking that a major injury has occured therefore sending the pain sensation to that area even though there is no injury. This is RSD. I try to trick Emily's brain into thinking about something different and therefore diverting those pain messages. The pain is totally there, scalding pain like you've been dunked repeatedly into boiling water (Em's description) but we try all kinds of stuff to make it go away.

Emily has a white room in her head

Guided imagery has been a good tool. When the pain gets to the highest level, a 10 on the pain scale I remove her from wherever she is and take her to my room. I have her close her eyes and I talk softly to her. I take her to a white room in her head. A perfect circle with no windows or doors, In the center of the room is a white bed with crisp white sheets. I tell her that she's laying in this soft crisp bed and that she can feel the sheets softly brushing against her skin. The ceiling is open and she can see the beautiful blue sky, can hear birds or sheep on a distant hill, can smell the ocean or fresh cut grass depending where she wants to go. I can keep her going for hours, we can decorate the room, add whatever we want. We often go to the ocean and hear seaguls, smell the salty air, she can feel the breeze on her face. I do whatever I can to get her mind away from that horrible number 10. Whatever it takes ...