G has been so strong. When I first started reading about CRPS everything, EVERYTHING, said the most important thing was to push through the pain and use the limb. The longer she went without using her foot the more severe the CRPS would become.
We told her that we knew it would be hard, but it was time to ditch the crutches. The pain was bad. She could barely hobble without them. She practiced over the weekend, and then I told her she needed to go to school without them. She said she would never make it to her classes on time so I emailed all her teachers letting them know what we were doing and asking them to not mark her tardy. When she got home from school she hurt. She was mad at me for making her do it. I felt terrible but I also knew it had to be done.
I continued my research and began connecting with parents of teens with CRPS. At one point I was put in touch with a young man named Sam who had been diagnosed 2 years ago. We began messaging one another and then he offered to call me. He was really straightforward and gave me great advice. He said G HAD to keep using her foot. He said she should only use her bed for sleeping (she had gotten in the habit of long naps and "rests" over the last 3 months), and that she needed to be up and in a chair or on her feet getting back into her life.
There are a few moms that have become my lifeline. Most of which have been through this and have come out the other side, one of them is still in the trenches with her sweet girl, but several months ahead of me.
The last couple weeks are a blur. I don’t eat, I don’t sleep and I barely breath. I cry, pray, and research CRPS. Wash, rinse, repeat. There is no protocol that works for everyone. Not even one that works for most people. There are a lot of things that work for some people. And by "work" I don't necessarily mean remission, but simply pain reduction. There is a lot of talk about "acceptance" and learning to live with the pain. Again, this is considered the most painful disease in existence. I am not after that. I am chasing anything and everything toward remission. And then I will pray they find a cure before she ever comes out of remission.
