Developments

Mercifully, the pain wasn't quite as bad yesterday, but it's pretty bad today.  At least I got some decent sleep last night.  Sometimes I can find a comfortable position on the couch for a little while, sometimes I can't.  It seems to be random.  Right now, I'm in quite a lot of pain.

Fortunately, my friend Emily was here while I was dealing with this new and exciting development.  She came in from Philly on Thursday for a job interview at Duke, and stayed with me until today (Sunday).  So she and Gus were able to help me formulate a plan of action.  She also made me some food.

Emily

Apple dumpling and ice cream

I got an appointment for Monday to see if I can get my wheelchair adjusted to be a little less painful.

We were able to get in touch with Dr. Dahners, the orthopedic surgeon regarding my new pain, and we were able to get a new appointment for this Thursday to talk about it.  In preparation for that appointment, I had to go get some blood tests and some x-rays.  Emily was able to take me to get those, and was able to come to the appointments with me to be my advocate.

It has come to my attention that I need an advocate when I go to doctor appointments.  I have a tendency to get overwhelmed and forget to ask important questions.  I also often forget what was said in the appointment.  It's difficult to pay close attention when you've got as much emotional investment as I do so it was invaluable to have Emily with me for the appointments this weekend.

The other good news is that my friend Ashley called me today, and was able to give me a lot of good information about my options for next steps.  She also called her uncle, Dr. Campion (Ed), who is now the head of orthopedics at UNC, and offered to come with me to my appointment on Thursday.  Ed is also going to try to attend.  So that should be very helpful.  Ed told Ashley they will probably refer me to a pain management center so that might be helpful.  I sure hope so, but I really don't want to go on narcotics.  I really don't enjoy being loopy.

Ashley also mentioned that I should be able to get a personal care assistant (PCA) paid for by insurance.  It could be either someone from an agency, or it could be somebody I already know who would just need a little training and could then be paid to help me out.  Ed recommended I talk to the financial counselor at his office when I come in on Thursday to investigate how I might get that paid for.

Anyway, I just wanted to give an update.  I'm still in a lot of pain, and it's still a huge problem, but at least I have some idea what to do next.