I realize that the majority of people who don't actually know me that read this blog read it because they're facing surgery for their Chiari.  I feel like every once in a while, I have an obligation to update my condition...because there's so little information out there.

I warn you, gentle reader, this story isn't really going to have a happy ending.

My physical condition continues to deteriorate.

Motor control loss.  Vertigo and equilibrium issues.  Mobility loss. Ever worsening pain.  Tinnitus so loud I have difficulty in conversations.  Of course, my conversations are made difficult by my increasingly obvious cognitive degeneration.  I'm slower, less sharp, less articulate.  I have difficulty holding focus and forget what the conversation was about in the first place.  I'm still having grand mals, and Imatrex seems to help, so my neurology team thinks they're actually migraine-related.  I need help bathing, walking, dressing, and sometimes eating.  Some days I only need some help, some days I need help with everything.

Some days I lie in bed and scream and cry from pain until the painkillers kick in.

Some days I shit myself.

Some days I'm really scared for what the next 45 years of my life will look like.

After a little more than a year since I had to stop working, I'm finally officially retired.  My disability pension should be kicking in soon.  That will be nice, because our expenses currently exceed our income and it had been getting pretty dire.  

People like to offer me all sorts of advice that they somehow think will be "helpful," like I haven't been living this disaster 24 hours a day for YEARS.  As though we're sitting around, helpless despite the abundance of service information, medical studies, assistance programs, and, of course, holistic/natural/eastern/woo-woo/hocus-pocus/fad diets.  

Whatever it is that you feel compelled (for whatever damn reason) to tell me I NEED to do, please keep in mind the following:

A.) Yes, I already know about it.

B.) Yes, I've already tried it.

C.) No, it did not work.

Worse that the actually practical things like acupuncture (stopped working after my brain surgery,) elimination diets (NOPE, no effect whatsoever,) applying for medicare/In Home Support Services (I qualify for NOTHING,) are the truly off-the wall suggestions that are outright insulting.  MULTIPLE people have suggested that my husband and I divorce and I forfeit my home to him so I can get government assistance.  ARE YOU FUCKING KIDDING ME?  Why, WHY would anyone ACTUALLY say that?  Seriously.  Think before you open your fool mouths, people.  

Anyway.  

I'm working on the "last big thing" I'll do before I can't really do anything anymore.

Every day above ground is a good one.

For now.