Sunday, May 1, 2011

An Apology-

I want you all to know that I have not deserted you.  I am still here.  My pain still very much alive.  I have had to turn my attention elsewhere. 

My son was diagnosed with Autism shortly after my last posting.  I have been pouring all of my focus and efforts into advocating for him, as I had been for myself.  People, strangers, pouring in and out of or home, day in, and day out.  Therapy for at least two hours a day. 
I had to forget my pain for the sake of my son.  I found what time I could to go to my pain doctor, and we worked on a plan to get me off of the percocet.  That was a week from hell.  We have been experimenting with other medications to see if they would help ease the pain- using Alzheimer medications and taking them at high doses for the off label use to help with nerve pain.  My neurologist and pain doctor think my pain is more of a Central Nervous pain disorder than RSD, but no doctor seems to really agree on any diagnoses. 
I have a file of all of my medical records, films, photographs documenting the progression of my condition.  I talk to the insurance company almost weekly now. 
I fell into a deep depression after my son was diagnosed, and it took all of the internal strength I could muster to get back up.  There were days I just slept through the pain.
Now it looks as if the current medication trial isn't working, and I will either try increasing my seizure medication to help the pain, or start taking an oral ketamin.  Both perspectives have me nervous.  I'd hate to tinker with my seizure medication, since my seizures are fairly well controlled.  As far as the ketamin, from what I understand, it is a very sedating medication, and I need to be as awake as possible.  My son has a lot of physical demands.  He needs me to take care of him.

I promise to update again.

1 comment:

  1. I am very sorry to read about your son's diagnosis and your extra struggles. Good on you for getting back up, I know that must be terribly hard to do. My pain progressed from regional to central, for some reason a lot of doctors still don't understand that this isn't an odd progression, in terms of how chronic pain effects the brain, it's really to be expected as often as not. I wish you much luck in finding the right sort of treatment and help for both you and your son. x