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.

Friday, January 14, 2011

It takes a lot.

I've been to Boston and back.  The neurologist treated me like I was wasting his time.  And I was disappointed, to say the least.  I think that was the point where I became emotionally numb.  I've had no other choice.  At the rate I had been going, and with the holidays, I was going to emotionally burn myself out.
I have since been through a sleep study, been told my liver is starting to dysfunction, and had continued dental and inner ear problems on my left side.

No new answers. No new news.  I normally would be frustrated and depressed.  But, I have focused my energy in more productive ways.  I have too.  I have my son.

I am a volunteer on the art community-  That helps a lot.  I get to talk to people and help people out.  Something I am not capable of physically doing at home, or even with friends.  Some are just as 'drained' of my health problems, and I can understand that.  It is nice to take a 'break', and feel normal for just a little while.

Art in general, is great therapy for the physical and emotional pain.  I get to step away for a period of time, and work on something that either reflects my hopes and dreams, or lets me release my deepest thoughts and feelings.  It's a period of meditation.

I'm going to have to kick it back in to high gear again.  Not know why I hurt, the drain it is taking on my physical and emotional health, is having its affects on not only me, but the ones I love.
Eventually something will need to be done.