The New Deal

When Katherine was 3 she wouldn't answer to anything but Annie.  She loved the movie, the Broadway show, and anything having to do with Annie. Jason dressed up as Daddy Warbucks and we decked the house out to resemble a mansion to celebrate her birthday.  It was quite the extravaganza.  Little Annie, along with the depression suffering Americans were all asking Herbert Hoover for a 'New Deal" for Christmas. 

I want a new deal.  I want a new plan, a new lease on life, a new chance at living without thinking about slurring, chewing, swallowing, walking, drying my hair, shaving my legs and breathing.  Note that shaving my legs came before breathing.  I am the queen of downplaying what is happening with the MG.  Today my good friend called and asked how I was.  I very slurringly and breathlessly said, "oh, I'm okay, how are you doing?"  She laughed.  We all laugh at me and my crazy, oh I'm fine. 

I know that I am not fine.  I know that without all the steroids, extra rest and copius amounts of wine that I would be hanging out in the ICU with a tube down my throat.  So the new plan?  The guru in Boston was all up in arms that we have been dealing with the symptoms as they come rather than trying to treat them before they hit.  Kind of hard to treat symptoms before they hit when all the treatments only last for a few hours.  And he acknowledged that he hasn't ever seen a myasthenic like me- one who responds to treatment within minutes only to have the drugs last for a few short hours. 

Looking over my history (you would be amazed by my flow charts) I was the best I have been in the past 6 years last years after big doses of Rituxan (chemotherapy).  After the Rituxan, I was able to last a full month between IV steroid infusions (solumedrol).  Just to give a bit of perspective, I am now lasting about 15 hours between infusions.  So the New Deal for me... every six months I will be getting 2 big doses of Rituxan which will hopefully reduce me to once a month solumedrol.  In the mean-time, I am being treated with lots and lots of steroids, which leads to crazy fun (NOT) times here at home. 

I have resigned myself to the side effects of the steroids until we get the chemo going.  This is going to work... this is going to be the long term drug induced remission that I have been praying for.  Regardless, my husband, kids and I are in for a wild ride.  You gotta love a crazy Mommy.