It's been a while

I guess I feel like I have to have something really interesting or heartfelt to say now that I know people are reading this. It was easier to write for writing's sake when this thing was unpublished/unread. I should be able to write and pretend that no one will ever read it, but I can't.

I've been keeping my head above water... mostly. This diagnosis has been a long time coming and the path has been so terrible that it's only in hindsight that I can see how everything has changed. From now on everything is going to be "before my mom got sick" and "after my mom got sick." My whole life will be divided into those two categories from now on and I'm heartbroken when I think of the future I've lost. I miss that future. I miss the assumption that I'd watch my mom grow old. I miss not thinking about all the years I will have to face without her.

It feels like my old life, the one where mom was healthy and invincible, was a dream. That reality is so far gone now that I have a hard time remembering what it was like. It's hard adjusting to being this person...this person who spends every waking hour seeking out distraction... this person who is watching her mom die.

This policy of distraction seems to work for me. It's allowed me to function and live my life without breaking down at inappropriate moments. It allows me to enjoy my time with mom and not constantly obsess over that someday when she won't be here anymore. It's almost like being normal again, it's just a more shitty normal.

In the news:

-Mom isn't eligible for participation in the NP-001 trial because she's been taking sterroids. She is off of them now, but she has to be off of them for 12 weeks to qualify

-Mom isn't eligible for the Creatine-Tomoxafin trial because she is on Coumadin for her clots.

-The Dexpramipexole trial is full and they yanked enrollment last Tuesday. I'm a little miffed that I've been trying to contact the woman about the trial since early July and she's gets back to me a week after enrollment is closed.

-No other trials are being held in our area. I will be on top of anything that comes up.

-We have reached 75% of our $5K on Operation Kay!

- Mom got a lift recliner for $100 on craigslist. Kathleen doesn't have to lift her out of the chaiz lounge anymore, this chair lifts her into a nearly standing position.