Bracing Ourselves

Halloween is just a few days away.  The official start of the holiday season – my favorite time of year (Remember? “Happy Hallowthanksmas”!!).  It’s going to be a difficult season and I’m trying to brace myself.  If Rudy’s absence could feel any more acute, it’ll be in the next couple of months.  This month has already felt empty without the thought and planning we typically put into Halloween and Rudy’s costume…especially in recent years.  I’m missing the fun and creativity Rudy inspired this time of year.  I am missing Rudy.

I don’t want to sit around and be depressed all season and if all we were trying to manage is the loss of Rudy, I’m pretty confident I’d be motivated to redirect on some levels and give back in creative ways in Rudy’s memory but we’re trying to manage so much more and my heart isn’t in any of it…yet.  I’m praying for holiday inspiration and joy.

Speaking of management, I had an appointment with my local neurologist on Wednesday (also the 3 month mensiversary of Rudy’s passing).  Like us, he is surprised by the long delay for my 2nd opinion and feels we shouldn’t wait any longer to begin disease management.  He is referring me to a pulmonologist for tests to gather baseline lung function data which will be helpful in the future.  He is also prescribing another drug (Radicava) that will take some time to get approved by insurance and wants to get the process started now.  It’s a drug that is administered intravenously (daily for two weeks, off  two weeks, etc).   Of course, if the diagnosis changes as a result of the 2nd opinion, we’ll cancel the plans in motion and redirect but I don’t think we’re going to see a change in my diagnosis…my symptoms are getting worse.  Rolf and I are beginning to explore local support resources specific to ALS and I’ve applied for a clinical stem cell study at UCIrvine (a long shot worth exploring).  Wednesday was hard.  I’m working on seizing today and not becoming overwhelmed by the heartbreak that blankets our holiday season this year or the heartbreak that seems to be blanketing everything right now.  I guess we’re bracing ourselves for more than just the holidays.

My appointment with UCLA is set for November 9th.  Had there been a cancellation allowing me to go sooner, it would have happened yesterday so November 9th it is!  Cedars got back to us with an appointment date on November 8th.  Since the timing of both appointments is essentially the same, we’ve decided not to go Cedars and just stick with UCLA.  It definitely feels like we’ve spent the past 5 weeks spinning our wheels but I’m still trusting in the timing of it all and eager to see where the next couple of weeks will lead.  Thank you for your continued prayers dear friends!