Agony

Just a really difficult day.

I met with Emily's VP at school today for a chat about how we can help Emily go forward. It's been decided that she needs to go onto home bound schooling. Keeping the routine of daily life is very important for RSD patients so I'm not thrilled that Emily will no longer get the stimulation of her wonderful school but I know it's by far the best thing for now. I feel that Emily puts pressure on herself and that unknowingly so do the teachers. Of course they do, it's their job and Emily's teachers are just concerned that she's falling behind. Being home schooled for a while will actually catch Emily up but without the stress. We checked Em's grades and she's actually doing great on the work she can get in.

Emily's pain level has been up at a 9 for the last week and she's reaching the end of the line. I've been watching the barometric pressure change and the temperature fall and this has triggered a flare. I can only imagine how she feels with a constant throbbing, burning pain in her legs day and night. Tonight she reached panic mode. I could tell it was coming. Back were the tell tail signs, the rocking, the fidgeting the rubbing of the leg constantly, the pale face and the look of sheer panic in her eyes all sign I dread seeing. At 8 o clock she finally came to me and asked me to admit her to Cooks. Knowing what I know about Emily's fear of hospitals I took this as a massive cry for help and took action. I had been trying various things thought the day but nothing worked.

It's almost 2 am and the last 4 hours have been spent trying to find a comfortable place for Emily to lay. A position that she can maybe catch a little sleep possibly with reduced pain. We've medicated, creamed her legs for hours because sometimes FIRM massage helps, we wrapped her legs in fleece then covered them with a heated blanket. I distracted with TV, singing, chatting, guided imagery, hand massage, reading, music and hair stroking until a highly medicated Emily fell into a drug induced sleep.

Do I take her to the ER only to have them keep us waiting and not know what to do. Would our Neurologist be on call because if not it'll be a waste of time. Should I watch her all night in case she reacts badly to the medication that she's been off for a while. Will she wake up screaming, will she wake up? Can anyone ever truly help us ...

Back to that sick in the pit of your stomach feeling, back to the desperation and despair and back to the worst feeling of helplessness that you'll ever know. Am I supposed to sleep now? How can I sleep knowing what I know? Instead I write here in the hope that typing my thoughts will empty my head enough for me to keep going.

Tomorrow I start making calls to try to get Emily into Dr Shelly's hospital in Pennsylvania. I know the waiting list is long and the expense is high but I think we need to go.