Friday, May 13, 2011

Ch ch ch changes . . .

Well there is change, and then there is change.  In my last post, I ended saying it was time for a change.  Be careful what you wish for.  We really did, do, need a change, but the changes we experienced this week were not what I had in mind.

In a session with Doc D last week I expressed my desires for therapy and/or med changes to help Lily become more functional in the real world.  We agreed to pursue a more focused approach to dealing with her OCD issues, including an effort to modify her meds.  Lily wanted to try Abilify again, becuse she wants to get off the Zyprexa due to the appetite/weight gain issues.  My vote is for a moderate increase in the Lamictal, but we agreed to honor Lily's request and re-introduce Abilify.

On a Wednesday evening we added  5 mg of Abilify to her med regimen.  Over the next 4 days, Lily became increasingly more agitated, until the psychosis returned and blew us out of the water on Monday.  Lily fought with and was frightened of Invisible People all day.  She wanted to flee the house because the IP were pushing a nearby industrial building into out townhome and she was afraid we'd get crushed.  What can sound like a comedy sketch is so unfunny in real life.

After a phone conversation with Doc D, we agreed to discontinue the Abilify.  During the last few days, Lily's psychosis has lessened as the med has gradually left her system.  We've used more Ativan than usual, and resorted to Klonopin one day, but she is improving.  She is having some discomfort in her feet and hands, and we don't know if that's related to any of the events of the week.  It could just be one more somatic issue, but it is adding to a stressful week.

I'm having a hard time letting go of my illusions about normalcy.  I get so tired of hearing Lily's many complaints, and then I'm ashamed because I think about how horrible it all is for her.  We've made progress, Lily is better than she was last fall, but I want so much more, for all of us.  I want 30 minutes to take a walk in the sun, an afternoon at the beach, the freedom to go to a restaurant for dinner, with no drama.

I want to listen to a song without having Lily flip out because she doesn't like the beat, or she hears "ck" words.  I want to be able to be in the yard without Lily yelling every couple of minutes because she wants me inside with her.  I want, I want, I want . . .

I know that Lily wants too, different things than I do.  I'd wish her OCD stuff away.  Lily would like to have the anxiety inducing stimulus disappear.  No meat, no "ck" words, no typing sounds, no bees, no dirty hands on her younger brother, no sounds from her younger brother.

I know Lily would love to have peace, positive interactions with family and friends, physical comfort, more laughter.

I know it's my job to get her enough help to be able to participate more fully and comfortably in daily life.  It also happens to be my job to get in 20 hours a week at my job, provide healthy physical and emotional care for her younger brother, get the bills paid, and maintain relationships with my other wonderful children, who aren't children any longer.  But they're no less important.  Less needy, but not without need.  Even grown kids need mom, thank goodness.

So clearly, I'm not at peace about where we are in this process.  But I'm trying.  Just like Lily.

1 comment:

  1. Oh Honey, Lilly does sound (more and more) like Obug. I pray for each of you....